Pathways For Caregivers

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www.LiveUnitedMorris.org | 973.993.1160, x 139

ACKNOWLEDGEMENTS Pathways for Caregivers was written and compiled by many members of the Caregivers Coalition. We thank the following people for their hard work creating Pathways, and for their dedication to helping improve the lives of all caregivers. Pathways Committee Sue Anderson Jessica Barzilay Karen Brown Michele Cameron Bill Cramer Carol DeGraw Karen Donofrio Cathy Douma Patrick Fannon Barbara Flint Jean Funk Eileen Johnson Nelly Koetzner Andy Lapides Additional Contributors Christine Anderson Laurie Becker Kristine Beirne Michelle Borden Theresa Davis Carmine Deo Lucy Deutsch Paul Devine Tammy DiLoreto Melody Federico Lauren Hirtes

Tom Murphy, Esq. Arleen Nussbaum Dawn Perdon Jennifer Perelman Theresa Petrasek Carolyn Racioppi Lori Rubin Kathy Shoffner Carmela Slivinski Ronnie Spliethoff Dawn Thomas Christa Utz Debbie Ward Charlie Wharton Tom Kane, Ed.D. Rosaelena Klingener Stephanie Kramer Deborah Miller Tammy Miller Bob Parker Susan Smith Sabine VonAulock Julia Wimmer

The Caregivers Coalition of Morris County is a United Way of Morris County Initiative.

WELCOME TO THE COALITION United Way of Morris County has long focused its efforts to improve the lives of Morris County’s seniors and people with disabilities. In January, 2005, we expanded this focus to include support for another group of very important people, caregivers – those who care for family or friends with chronic illnesses, disabilities, or issues of aging. Caregivers provide a valuable service to their loved ones and to our community, yet they are often providing care without the support and resources they need. Frequently, as they care for another, their own health is compromised. United Way of Morris County founded the Caregivers Coalition to help. The Coalition, led by United Way staff and a volunteer Steering Committee, is a group of caring volunteers who share a commitment to improving the lives of caregivers in Morris County. In addition to non-profits, for-profits, government agencies, faith-based groups, corporations, and community members, the Coalition includes over 210 caregivers whose voices guide the work of the Coalition. United Way is proud of having founded the Coalition. We are impressed with all that the members of the Coalition have accomplished, and we are honored to be dedicating staff and volunteer resources to help the Coalition expand its reach and to continue supporting those who do so much for others…caregivers. We are pleased to have been part of creating Pathways for Caregivers and hope that you will find it to be a valuable resource for you and others that you know. Sincerely,

John Franklin CEO United Way of Morris County

Lori Rubin Coordinator, Caregivers Coalition United Way of Morris County

“There are only four kinds of people in the world – those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers.” Former first lady Rosalynn Carter

It is important for caregivers to recognize that they are not alone, to learn that caregiving is more than a one person job, and to see that taking care of themselves is vital to their loved one’s wellbeing. The National Family Caregivers Association

HOW TO LIVE UNITED IN MORRIS COUNTY: JOIN HANDS. OPEN YOUR HEART.

LEND YOUR MUSCLE. FIND YOUR VOICE.

GIVE 10% GIVE 100% GIVE 110%.

THINK OF WE BEFORE ME. REACH OUT A HAND TO ONE

AND INFLUENCE THE CONDITION OF ALL.

CAREGIVERS, YOU ARE NOT ALONE The Caregivers Coalition is committed to improving the lives of caregivers. Its mission is to promote knowledge of, sensitivity to, and action around caregiving issues. All are welcome!

COPYRIGHT NOTICE Distribution of this guide is offered as a service to caregivers, through funding from United Way of Morris County and members of the Caregivers Coalition. It is provided free of charge. For additional copies, please contact the Caregivers Coalition of Morris County Coordinator at 973.993.1160, x139. PDF copies of portions of Pathways are available for downloading at United Way of Morris County’s website, www.LiveUnitedMorris.org. Click on the Caregivers Coalition of Morris County. Information in Pathways for Caregivers was the most current available at the time of publication; however, some material may change or become dated without notice. The sponsors, organizations, and agencies listed assume no responsibility for time sensitive information. It is the responsibility of the individual user to verify the accuracy of pertinent content. © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

Section 1 Caregiving for an Aging Loved One

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Caregiving for an Aging Loved One Chapter 1

Introduction …...……………………………….

5

Chapter 2

Becoming a Caregiver for a Loved One with Issues of Aging………...……………………….

6

Chapter 3

Where to Begin: Finding the Support You Need

9

Chapter 4

Caregiver Education Programs

..………....

10

Chapter 5

Caregiver Support

..…………………….…..

12

Chapter 6

Care/Case Management

..…………….……

17

Chapter 7

Benefit Programs & Financial Matters……….

19

Chapter 8

Legal Matters

32

Chapter 9

Day & Home Care Programs

………………

39

Chapter 10

Employment & Volunteering

……………….

41

Chapter 11

Housing for Aging Loved Ones……………

42

Chapter 12

Transportation Information …………………….

46

Chapter 13

Advocacy

.……………………………………..

49

Chapter 14

Life Transitions for Caregivers………………….

51

Appendix A National Websites on Caregiving………………

173

Appendix B Disease/Disability Specific Websites …………

175

Appendix C Glossary of Legal Terms………………………..

178

………………………………...

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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1. Introduction to Pathways for Caregivers of a Loved One With Issues of Aging We are glad that Pathways for Caregivers has found its way to you and hope you find it a helpful tool. Pathways is intended to be a source of information, advice, and ideas about how to get the support you need on your caregiving journey. Whether you are planning ahead for an aging loved one, or find yourself in the middle of a crisis with decisions that need to be made quickly, information and resources can often be confusing and difficult to access. While you will find some organizations and agencies referenced, Pathways is not meant to be a complete list of all the County agencies and services that are available. 2-1-1 First Call for Help and the Morris County Division on Aging, Disabilities, and Veterans/NJ EASE are your best bets for that. You will find them referenced throughout this guide. Rather, Pathways IS designed as a “roadmap” to help put you on the right track for your caregiving situation, and to support you along the way. Pathways for Caregivers was created by members of the Caregivers Coalition of Morris County. This means it was created BY caregivers FOR caregivers - created by caregivers, for you. As you read this guide, please keep in mind that it is intended to help caregivers who may be facing a wide range of situations. While planning ahead is important, we recommend that you try to focus on the caregiving stage that you are currently in, and not look too far into the future, as sometimes trying to look too far down the road can be a bit overwhelming. The most important thing to know is that, as you take on caregiving responsibilities, you need not caregive in isolation. Reach out. Ask for help. There are resources, organizations, and fellow caregivers who can provide you with the support you need.

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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2. Becoming a Caregiver for a Loved One With Issues of Aging If you support your aging loved one in any way on a regular basis, from driving to appointments or shopping, to managing his or her finances, to discussing medical issues with his or her doctor, to providing emotional support, you are considered a caregiver. The following is a list of activities that, if done on behalf of another, are traditionally considered “caregiving”: Occasional or daily help at home (chores, meals, transportation, etc.) Financial and/or business assistance (balancing checkbooks, paying bills, etc.) Emotional support Daily supervision and/or personal care Arrangements for doctors’ appointments (making calls, transportation, explanations, or translations, etc.)  Medication management     

Whether your aging loved one lives with you, in their own home, in a facility, or even a long distance away, if you do any of these things on a regular basis, YOU are a caregiver...and we hope this guide will be of help to you. While you may do just a few things for your aging loved one at the moment, it is a good idea to be aware of, and even track, changes that may occur. With an aging loved one, there are warning signs to watch for that signal an increasing need for support. Warning signs to watch for: • • • • • • • • • •

Difficulty walking or unsteady when standing Poor grooming or personal hygiene Loss of appetite or changes in eating Spoiled food and/or little nutritious food in home Loss of interest in activities once enjoyed Difficulty concentrating Memory loss, confusion, abnormal conversation Personality changes Unsafe conditions in home Difficulty managing medications, finances, etc.

The emergence of, or an increase in, any of the above, may signal that it is time to begin providing additional support for your loved one.

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Stages of Caregiving In caring for your loved one you may, over time, experience different stages of caregiving. Coping with these changing stages will require you to manage stress, perhaps develop new skills, all while maintaining a level of flexibility as you adapt to your loved one’s changing needs. But, in reality, how many caregivers are given the opportunity to fully prepare? Realistically, most caregivers climb a steep learning curve, as they become a medical connoisseur, system navigator extraordinaire, assertive advocate, financial guru, and legal expert all in one. For many, this must be done while balancing a full or part-time job, children, grandchildren, spouse, and other relationships and responsibilities, while trying to maintain their own physical health, mental health, social life, and overall well-being. Life is a journey – each of us can only take one step at a time. Caregiving for an aging loved one is no different. Caregiving for an aging parent, spouse, domestic partner, relative, or close friend presents a variety of difficult challenges. These challenges can arrive in an instant, as with a sudden crisis, or can develop over time, through a series of small, but sometimes disconcerting, mishaps and warning signs. You may be the only person to step in, or you may be part of a larger network of family and friends willing to share caregiving duties. Whatever the caregiving situation, you may find yourself unsure of which steps to take. And, of course, throughout any caregiving journey, those steps will change.

You Are Not Alone We don’t need to tell you that caregiving can be exhausting, even frustrating at times. For any caregiver, the stress of providing care can generate a range of emotions on any given day frustration, sadness, worry, even anger. So, do not try to do the entire job all alone! A strong network of friends, family, and service providers can help you, and keep emotions and exhaustion from becoming overwhelming. Ask for help, whenever you need it. Again, remember, it is important that you do not take on all your caregiving responsibilities in isolation. Through organizations noted in this support guide, you can find the resources and people you need to take care of yourself – taking care of yourself means that you will be better able to take care of your family member or friend. No matter what each stage of caregiving brings, it will always help to reach out to find the information and support you need to provide the best care possible, for your loved and for YOU.

Your Changing Role Throughout your caregiving journey, you may notice that your loved one requires different levels of care. Having to assume responsibilities that your loved one was used to doing independently can generate a range of emotions for you both. Accepting the deterioration and identifying the issues that are associated with the illness will help you cope with the role transition that you are experiencing, as well as the changing nature of your relationship with your family member or friend.

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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During this time, flexibility is the key. You will need to develop stress and time management skills that are necessary to cope with changes and increased demands that will occur over time. When you start to take on more and more daily tasks related to caregiving, it will become increasingly important to take advantage of resources in the community and whatever services you and/or your loved one are eligible for. If and when you are called upon to take on a new level of care, give yourself time to adjust. Do not expect your life to return to normal right away. The social structure you knew, the friends you had, and activities you did may have to change as you take on your caregiving role. Give yourself time to develop and establish new daily routines. And, remember that each caregiving situation is unique – no two caregivers will experience the same circumstances or transitions. There is no single way of caring. With the right information, resources, and support you will be able to care for your loved one and yourself in the best way possible.

Based on material from CHATS - Community Home Assistance to Seniors, Ontario, and Aetna Intilihealth © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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3. Where to Begin: Finding the Support You Need Your first call is an important one. Whether you are just beginning to provide care for a loved one who is aging, or have been a caregiver for some time but without any real support, here are some helpful first calls to consider:

Morris County Division on Aging, Disabilities and Veterans The County provides information, referrals, and direct client assistance for older adults, adults with disabilities, veterans, and caregivers. The Morris County NJ EASE office is a great place to start when seeking information on a variety of services. NJ EASE, which stands for Easy Access, Single Entry, is a statewide program that provides easy, local access to a coordinated system of responsive services.



NJ EASE: 1-800-564-4656 www.morrishumanservices.org/dvs/

2-1-1 First Call for Help 2-1-1 First Call for Help offers both confidential telephone support to people in crisis and personalized information and referrals to those needing assistance. 2-1-1 now operates statewide, connecting people with the resources they need to solve common life problems. It is staffed 24 hours/7days per week and can be accessed by dialing 2-1-1.

 Dial 2-1-1, or 1-800-435-7555 www.NJ211.org

Additional websites of national organizations with information on caregiving can be found in Appendix A.

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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4. Caregiver Education Programs There are a variety of caregiver education programs available throughout Morris County, ranging from in-home instruction to public seminars. These programs are designed to educate caregivers in assessing care needs and in developing the skills necessary to provide care. Programs address issues such as personal care, (e.g. bathing, lifting, transferring), disease education, medication management, legal issues, self-care, and more.

Morris County Division on Aging, Disabilities and Veterans  NJ EASE 1-800-564-4656 www.morrishumanservices.org/dvs/ Caregivers Coalition of Morris County, a United Way of Morris County Initiative The Coalition’s Lunch & Learn Education Series offers a series of free caregiving workshops by professionals in the field. These highly rated programs may be scheduled by any local group, including corporations, faith based organizations, civic groups, etc. Contact the Coalition Coordinator for an updated list of topics, or to schedule a workshop.

 973-993-1160, ext. 139 www.LiveUnitedMorris.org Caregiver Outreach in the Workplace a program of Family Service of Morris County Family Service of Morris County provides working caregivers in the Morris County community with a variety of free elder caregiving workshops on-site at business locations throughout the County. Programs are presented by a professional geriatric care manager and change seasonally. Call for a complete list of topics.

 973-538-5260 www.fsmc.org

Educating yourself about the disease or disability affecting your loved one is important. There are many disease/disabilityspecific websites available. Make sure the information you access is from a recognized and trustworthy organization. Some recommended websites can be found in Appendix B.

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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DOROT’s Caregivers’ Connections - Programs by Telephone The Caregivers’ Connections is a telephone conference call program with informational workshops for those who care for older adults. Through these sessions, caregivers are able to share mutual concerns, exchange ideas, and get much needed information without leaving their homes or workplaces. There is a minimal registration fee; scholarships are available.

 1-877-819-9147 www.dorotusa.org Visiting Nurse Association of Northern NJ (VNANNJ) The VNANNJ In-Home Caregiver Education and Support Program provides FREE in-home education and support to unpaid caregivers so they may improve their ability and effectiveness as caregivers. The care recipient must be over age 18 and functionally impaired with a chronic disease or disability. There are no income or asset eligibility requirements for this program. Specifically, the program will provide: •

•

•

A registered nurse to meet with the caregiver at their home to conduct an initial assessment and to set up a teaching plan that will help to relieve caregiver stress and increase caregiver effectiveness. In-home instruction to enable caregivers to identify the skills needed to provide proper care, including lifting and transferring, bathing, personal care, nutrition, disease education, stress management, and accessing community resources. Up to five professional home visits by a registered nurse, physical, speech or occupational therapist, social worker, or nutritionist to provide educational and support services, including stress management.

 1-800-938-4748 www.hometeam.org/index.asp

Medicare will pay for certain types of family caregiver education when it is provided as part of a patient’s medically-necessary face-to-face visit. A physician may be able to bill for family caregiver education as part of the counseling and coordination of care services provided during a patient visit, as long as the patient is on Medicare, the caregiver education directly involves the patient and is medically necessary. This education can take place in a doctor’s office or other outpatient facility, a patient’s home or private residence, or an assisted living facility or other domicile. See “Tip Sheet for Providers: Caregiving Education” at www.cms.hhs.gov/Partnerships/downloads/ProviderBillingforCaregiverEducation.pdf

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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5. Caregiver Support It is important for caregivers to recognize that they are not alone, to learn that caregiving is more than a one person job, and to see that taking care of themselves is vital to their loved one’s wellbeing. - The National Family Caregivers Association

Taking care of yourself. Scheduling (and keeping!) your own doctors’ appointments. Asking for help. Taking a break. These are vital steps you can take as a caregiver to keep yourself healthy. Studies show that caregivers are at a greater risk for health problems. As a caregiver, your health - both physical and emotional - is as important as the health of the loved one for whom you provide care.

STOP! STOP!

Self-Care Sometimes, as caregivers, we are so busy giving care that we forget or neglect to take care of ourselves. As caregivers, it is important to acknowledge that stress is a normal, sometimes difficult but definitely manageable, part of our caregiving. Stress can manifest itself in both a physical and emotional way; it is vital to find an outlet to relieve it! You may even need to give yourself permission to take care of yourself. That is fine, and good, and necessary! Self-care/stress management can be achieved in many ways. General attention to daily activities like healthy eating, exercising, sleeping, and talking with friends, is vital. Even for the busiest of caregivers, mini-breaks can be lifesavers. Go to a quiet room or step outdoors and just breathe for ten minutes; clear your mind and focus only on your breath. Write in a journal. Say a positive affirmation. Light a candle. Listen to music. Call a good friend. You might consider attending a support group. Support groups are organized groups of individuals who share a common experience and provide each other with various types of help, i.e., information, resources, and emotional support. Support groups can be led by a professional facilitator or be self-help groups.

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Other ideas may be helpful. These require a range of time and/or cost. Sometimes referred to as complementary or alternative therapies, there are options for everyone: o o o

o o o o o

Aromatherapy uses liquid plant oils and other aromatic compounds to improve one’s mood and health. Art therapy is based on the belief that the creative process is both healing and life enhancing. It uses art materials and projects as therapeutic tools. Chiropractic is a health care discipline that believes that re-alignment of the spine will alleviate any nerve interference that directly affects how stress manifests itself in the body. This can be especially helpful If you are physically moving your loved one from place to place, which takes a toll on your body; a chiropractor can teach proper lifting techniques that best protect your back. Massage therapy encompasses several disciplines that utilize body techniques to promote healing and health. Music therapy is the systematic use of music to maintain and improve one’s emotional stability. Reiki is a system of subtle energy healing using the laying on of hands and distinct healing techniques, designed to relax, de-stress, and heal. T’ai Chi is a slow gentle body movement, while breathing deeply and meditating, that helps the flow of body energy. The gentle flowing motion reduces stress and improves health. Yoga is a physical and mental discipline. While it includes physical exercise, it is also a lifestyle practice, the goal of which is the union of the mind, body and spirit. There are many different styles of yoga. You may need to explore a number of styles before finding the one that is right for you.

These are examples of some types of therapies that can help you manage your stress, as well as reduce pain, anger, anxiety, and even depression. There are others. Choose one or more that is right for you. Whether relaxing muscles and reducing inflammations, or improving strength, balance and mobility, or getting a more restful sleep...these are all critical ingredients of self care that will help you protect your own emotional and physical health as you continue your caregiving journey.

Respite Support Respite literally means a period of rest or relief. Respite care gives a caregiver temporary relief from the responsibilities of caring for a loved one with chronic illness, physical, cognitive or psychiatric disabilities. Respite is important for any and all caregivers, and is a key component to maintaining caregiver health. And caregiver health is, ultimately, vital for the loved one requiring care. Caregivers should take respite breaks regularly, without guilt. The length of respite care can be anywhere from a few hours to several weeks. Services that provide respite may be used for a variety of reasons, ranging from emergencies to vacation, and with a range of frequency, from a few hours per week or month, to weekends, even to everyday respite. Respite can be in-home or at respite centers.

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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In-home Respite In-home respite services consist of a worker who comes to the family home so that the caregiver can leave the house for a period of time. These services are usually provided by agencies that recruit, screen, and train workers. This type of respite is usually less disruptive to the individual needing care, provided there is a good match between the worker and the individual. Caregivers looking for this type of respite support would contact Home Health Care agencies.

Respite Centers Respite centers are facilities specifically designed for respite care. Adult day care programs and respite camps also fall into this category. This type of respite often offers more peace of mind to the caregiver, while providing a stimulating environment for the aging individual. However, centers usually restrict the length of stay and may exclude individuals based on severity of disability. Caregivers looking for this type of respite would contact Adult Day Care Centers, Nursing Home Facilities, and Rehab Centers. One good local starting point for lists of in-home respite agencies and respite centers is:

 Morris County Division on Aging, Disabilities and Veterans NJ EASE 1-800-564-4656 www.morrishumanservices.org/dvs/ The Morris County Division on Aging, Disabilities and Veterans (1-800-564-4656) has a Caregiver Guide with additional local resources that can be accessed online: www.morrishumanservices.org/dvs/publications.asp Click on Caregiver Guide

Statewide Respite Care & Morris County Respite Care Programs These programs provide respite care services for older adults, and for functionally impaired persons age 18 and older, to relieve their unpaid caregivers of stress arising from the responsibility of providing daily care. You must meet specific income requirements to be eligible. In Morris County, the County and State programs run side by side and can be accessed through:

 Visiting Nurse Association of Northern NJ 1-800-938-4748 www.hometeam.org/index.asp

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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General Caregiver Support Morris County Caregiver Support Program The Caregiver Support Program is designed to help caregivers access the services needed for their loved ones and themselves. The Project goes beyond information and referral to help with problem solving, advocacy, and support to sustain caregivers in their role. This is a new resource offered by the Morris County Division on Aging, Disabilities & Veterans created in partnership with the Caregivers Coalition of Morris County and United Way of Morris County. Visit the Resource Center at the County’s offices located at 340 West Hanover Ave, Morris Township, or call for information:

 Morris County Division on Aging, Disabilities & Veterans NJ EASE 1-800-564-4656 www.morrishumanservices.org/dvs/ Caregivers Coalition of Morris County, a United Way of Morris County Initiative Open to the public, and free to join, the Caregivers Coalition, a United Way of Morris County initiative, was founded to respond to the increasing needs of caregivers in the community. The goals of the Coalition are to strengthen services and resources to caregivers; improve access to information about caregiving and available services, and to identify and respond to gaps in services to caregivers. The Coalition also advocates for policies and legislation to improve the quality of life for caregivers, and provides educational programs to human service and health care providers, family caregivers, corporations, businesses, and the community. All are welcome. The Coalition’s Caregiver Advisory Panel (CAP) is a group of caregivers who are connected via phone and email; they share ideas, discuss issues, and support one another while advising the Coalition. These caregivers manage a range of caregiving situations. All caregivers are invited to join the CAP.

 Caregivers Coalition Coordinator 973-993-1160, ex 139 www.LiveUnitedMorris.org

Caregiver Counseling/Psychotherapy There are many counseling and support services available in the County through local hospitals, human service agencies, and private practitioners. In some instances, counselors may make home visits or will arrange to meet with, and support, those who are providing care to aging family members and/or friends.

Mental Health Association of Morris County The Mental Health Association maintains a database of private practitioners and other mental health related resources.

 973-334-3496 www.mhamorris.org © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Morris County Division on Aging, Disabilities & Veterans The Morris County Division on Aging, Disabilities & Veterans offers listings of caregiver counseling programs and support groups.

 NJ EASE 1-800-564-4656 www.morrishumanservices.org/dvs/

Other Supports for Caregivers Self-Help Groups Self-help groups can be of great help to those trying to cope with the demands of caregiving. There are many local, state, and national groups that can be found by contacting the NJ SelfHelp Group Clearinghouse. If the Clearinghouse cannot direct you to an appropriate group that is already set up, they will be able to help you to join with others to start one.

 NJ Self-Help Group Clearinghouse 1-800-367-6274 http://www.njgroups.org/ Internet Support If you are unable to attend support groups in your community, these websites may offer support:

 CaringRoad.com www.caringroad.org  Johnson & Johnson, The Caregiver Initiative www.strengthforcaring.com  National Family Caregiving Association www.nfcacares.org  NJ Department of Health and Senior Services – Caregiver NJ www.state.nj.us/caregivernj/search/index.shtml Telephone Support DOROT’s Caregivers’ Connections, a telephone conference call program, offers support groups to those who care for older adults. Through weekly telephone support groups facilitated by geriatric social workers and care managers, caregivers receive emotional support and have an opportunity to ask questions, get answers, and end the isolation that plagues so many caregivers. There is a minimal fee; scholarships are available.

 DOROT’s Caregivers’ Connections 1-877-819-9147 www.dorotusa.org

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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6. Care/Case Management for Aging Loved Ones Care/case managers work individually with older adults and their caregivers to create a plan of care that meets the needs of the older adult. Case managers do a comprehensive assessment, and then, in collaboration with the older adult and caregiver, develop a care plan. The case manager is an expert on available resources and helps the older adult and/or caregiver arrange for and coordinate necessary services. The case manger acts as an advocate for the older adult, and ensures that services continue to meet the older adult’s needs over a period of time and reassesses changes that may require additional services or readjustments in the care plan.

Public Case/Care Managers Public Case/Care Managers are funded through various Federal, State, and county tax dollars and are provided free of charge to the older adult. In Morris County, case management is available through the Morris County Office on Aging and other local agencies. For information:

 Morris County Division on Aging, Disabilities & Veterans NJ EASE - 1-800-564-4656 www.morrishumanservices.org/dvs/ Private Case/Care Managers Private Case/Care Managers may be either private consultants or someone who works for a for-profit or not-for-profit organization. Private case/care managers usually work for a fee and can therefore provide more extensive and personalized services. This organization can help you find a local Professional Geriatric Care Manager.

 National Association of Professional Geriatric Care Managers 520-881-8008 www.caremanager.org Remember, working with a Case/Care Manager is a partnership – the Care Manager knows the community resources – and you know your loved one – don’t be afraid to voice your concerns or preferences in services to be provided.

Other Care Issues Safety Issues As the caregiver, you should notify your local police if you think that they should be aware of your loved one’s disability for any reason. For example, the person may be a wanderer or might have difficulty leaving the house in an emergency. Once on record with the police department, this information will be accessible to fire and emergency health workers as well.  Project Lifesaver: This Morris County program will provide a person who wanders with a tracking device. For information:

Morris County Sheriff’s Office 973-285-6675 www.mcsheriff.org/main/cp-lifesaver/ © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Abuse There are different kinds of abuse to consider when talking about older adults: elder mistreatment and neglect. Elder mistreatment refers to any harmful conduct that is willfully inflicted on an older person. This includes physical, sexual, emotional, or financial abuse and exploitation. Signs of maltreatment and abuse include, but are not limited to, frequent visits to the emergency room, unexplained bruises or wounds, and depression, fear, or anxiety on the part of the person receiving care. Neglect can either be inflicted by another or self-imposed. Behavior is considered neglect when the responsible individual (i.e. caregiver, guardian, etc.) confines, isolates, or fails to provide essential services to prevent or lessen physical harm or mental anguish. Behaviors are considered self-neglect when an individual makes unnecessary or unsafe decisions or is taking part in unsafe activities. Signs and symptoms of neglect include things like malnutrition or dehydration, unsafe or unsanitary living conditions, missing or broken eyeglasses, hearing aids or dentures, and withholding of medical care, among others.

Adult Protective Services Adult Protective Services (APS) investigates reports of suspected abuse, neglect, and exploitation of “vulnerable” adults age 18 or older living in the community. A person is considered vulnerable if they are unable to act on their own behalf. Reports may be made by anyone. When a report is received, APS investigates. If the report is confirmed and the person is willing to accept help, APS will identify, and put in place, services that can help the vulnerable person. If you suspect a vulnerable older adult is being abused or neglected, call:



Morris County Division on Aging, Disabilities and Veterans 973-326-7282 www.morrishumanservices.org/dvs/

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After Business Hours: Call 911, or Sheriff’s Community Center: 973-285-2900

The Prevention of Domestic Violence Act This Act provides protection from abuse to older adults and people with disabilities. The Act authorizes the issuance of a restraining order using the criminal code to define abuse. A caregiver or any person who has reasonable cause to believe that an older adult or person with a disability is subject to abuse, neglect, or exploitation should report such information to the local police.

Identification Having an official photo I.D. is a good idea for everyone. A non-driver photo ID can be acquired at age 17; six points of identification are required, just as for a driver’s license. For information:

 NJ Motor Vehicle Commission 609-292-6500 or 1-888-486-3339 www.state.nj.us/mvc At any age, a photo ID can be acquired at the Morris County Clerk’s Office. This ID can include medical alert information. For information:

 Morris County Clerk 973-285-6120 www.morriscountyclerk.org © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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7. Benefit Programs & Financial Matters for Aging Loved Ones Key Benefit Programs There are a wide range of programs directed toward older adults. There are public programs on the National, State, and local levels. There are programs for which everyone over a specific age is eligible. There are programs for which a person must meet specific criteria, or live in a particular county. It is important for aging adults to be connected to the programs for which they are eligible so that they have the assistance to meet their needs. We will begin at the Federal level with the programs most important to the majority of older adults and people with disabilities.

Social Security Programs

As a caregiver for a loved one, you should review and write down key financial information. Keep it all in an easily accessible place. Let a trusted family member or friend know where this information can be found.

Social Security “Social Security” is the short name for the Title II Old Age, Survivors and Disability Insurance programs. It insures individuals and family members when the working family member retires, dies or becomes disabled. Workers qualify for benefits by paying Social Security taxes. As you work and pay taxes, you earn “credits” that count toward eligibility for future Social Security benefits. The major categories of benefits paid for through your Social Security taxes are:

1. Social Security Retirement Benefits Social Security is a federal program providing retirement income for those who have paid into the Social Security system. Note that the “normal” retirement age is being gradually increased from age 65 to age 67. You can get Social Security retirement benefits as early as age 62, but if you retire before your full retirement age, your benefits will be permanently reduced, based on your age. For example, if you retire at age 62 your benefit would be about 25 percent lower than what it would be if you waited until you reach full retirement age. NOTE: Sometimes health problems force people to retire early. If you cannot work because of health problems, you should consider applying for Social Security disability benefits. The amount of the disability benefit is the same as a full, unreduced retirement benefit. If you are receiving Social Security disability benefits when you reach full retirement age, those benefits will be converted to retirement benefits. For caregivers, the important aspects of Social Security involve the application process, taxation, and appeals. Upon application, Social Security will check their records to determine the exact benefit rate. This rate is a function of age and amount of reportable earnings. Once receiving a benefit, the checks increase automatically with the cost of living. Benefit payments are made for the prior month on the second, third or fourth Wednesday, depending on your date of birth.

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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If your loved one is not able to manage his or her own financial affairs, you, or another trusted individual, can be appointed as a “representative payee” to handle Social Security matters. The benefits are then made payable to you, the representative payee, who must use the funds for the personal care and wellbeing of the beneficiary. Records and receipts must be kept to show how the money was spent or saved. This must be reported to the Social Security Administration. NOTE: Some people have to pay federal income taxes on their Social Security benefits. This only happens if the beneficiary has other substantial income such as wages, interest, dividends and other taxable income that must be reported on the tax return in addition to Social Security benefits.

2. Social Security Disability Insurance (SSDI) The loved one you care for may have developed issues along the way that qualify as a disability. The definition of disability under Social Security is different than other programs. Social Security pays only for total disability. No benefits are payable for partial disability or for short-term disability. Disability under Social Security is based on a person’s inability to work. An individual is considered disabled under Social Security rules if he/she cannot do work that he/she did before, and the individual cannot adjust to other work because of his/her medical condition(s). Benefits can be paid to people at any age who have enough Social Security credits and who have a severe physical or mental impairment that is expected to prevent them from doing “substantial” work for a year or more.

3. Social Security Family Benefits It is important for families to know that if their family member is eligible for retirement or disability benefits, other members of the family might receive benefits, too. If the spouse is at least 62 years of age, or under 62 but caring for a child under age 16, he or she may also be eligible for benefits. Unmarried children under age 18, or under age 19 but still in school, or 18 or older with a disability, may also be eligible.

4. Social Security Survivor Benefits Certain members of your family may be eligible for benefits if their eligible family member dies. The family members who may be eligible include: a widow(er) age 60 or over, 50 or older if disabled or any age if caring for a child under age 16, unmarried children under age 18, under 19 but still in school or 18 or older with a disability. Parents may also be eligible if the deceased was their primary means of support. A special one-time payment of $255 may be made to the spouse or minor children. If divorced, an ex-spouse could be eligible for a widow(er)’s benefit.

Supplemental Security Income Benefits (SSI) Supplemental Security Income (“SSI”), often also referred to as “Social Security”, is a Federal income supplement program funded by general tax revenues and not Social Security taxes. It provides a minimum income to low income people who are 65 or older, blind, or disabled. Where Social Security is an insurance program requiring “paying into system,” SSI is a needs based program. The basic SSI benefit is a monthly cash payment. Living arrangements or monetary assistance from friends or family may reduce benefits. The monthly benefit rate varies depending on the state you live in. Most people who get SSI also qualify for Medicaid, food stamps, and other assistance. For more information about any of the above Social Security benefits:

 Social Security Administration 1-800-772-1213 www.ssa.gov © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Medicare & Medicaid Programs Medicare Medicare is a federal program of health insurance. It pays for acute illness situations. It is not designed to provide benefits for long term or custodial care. To be eligible, one must be 65 years of age and have paid into the Social Security system. If the person you care for is 65 or older and is already receiving Social Security benefits, he or she will be enrolled automatically in Medicare. Individuals receiving Social Security Disability benefits will get Medicare coverage automatically after they have received disability benefits for two years. If he or she is not already receiving Social Security, you will need to call the Social Security Administration.

Medicare Part A Part A is primarily hospital insurance. Following payment of a deductible, Medicare Part A will pay patient expenses for 60 days of hospitalization. After 60 days, the patient is required to pay a greater amount of the hospitalization cost. Part A will help pay, in certain circumstances, for limited stays in skilled nursing facilities, home health care, and hospice care. Most people do not have to pay a monthly premium for Part A.

Medicare Part B Part B pays for doctors' services, outpatient care, outpatient physical and speech therapy, some home health care, ambulance services, and some medical equipment and supplies. Part B is optional and requires a monthly premium. There is also an annual deductible that must be met before Medicare starts to pay its share.

Medicare Part C Medicare Part C offers Medicare Advantage Plans that combine your Medicare Part A (Hospital) and Part B (Medical). Private insurance companies approved by Medicare provide this coverage. In some cases the premiums and/or co-pays can be lower than in the original Medicare plans. Medicare Advantage Plans offer a number of types of plans including Preferred Provider Organization (PPO) Plans or Health Maintenance Organization (HMO) Plans. These plans coordinate your loved one’s medical care with some plans having stricter network and referral requirements than others. Many of the plans include Medicare Part D (Prescription Drug coverage). It is important that you read the plan information carefully to ensure you are selecting the right plan for you or your loved one.

Medicare Prescription Drug Plan Part D Medicare offers prescription drug coverage for everyone with Medicare. This is called “Part D.” This coverage may help lower prescription drug costs and help protect against higher costs in the future. It can give you greater access to drugs that you can use to prevent complications of diseases and stay well. These plans are run by insurance companies and other private companies approved by Medicare. Part D is optional. Cost: If you join a Medicare drug plan, you usually pay a monthly premium. If you decide not to enroll in a Medicare drug plan when you are first eligible, you may pay a penalty if you choose to join later. If you have limited income and resources, you might qualify for extra help paying your Part D costs. This is only a general overview of the system. Individual circumstances and situations will vary. For more information, or a comprehensive look at the details of this program:

 Centers for Medicare & Medicaid Services (CMS) 1-800-MEDICARE www.medicare.gov © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Medigap Medigap is also called "supplemental insurance." Generally, a person must have Medicare Part A and Part B to buy a Medigap policy. There is a monthly premium for Medicare Part B. In addition, a premium must be paid to the Medigap insurance company. A Medigap policy is health insurance sold by private insurance companies to fill the “gaps” in original Medicare Plan coverage. Medigap policies help pay some of the health care costs that the original Medicare Plan doesn’t cover. If your loved one is in the original Medicare Plan and has a Medigap policy, then Medicare and your Medigap policy will both pay their share of covered health care costs.

 www.medicare.gov/medigap/default.asp The State Health Insurance Assistance Program (SHIP) SHIP is a statewide program that provides free, objective information and assistance about Medicare, Medigap, and other Medicare insurance plans. Trained volunteer counselors are available to help you make informed choices. To contact counselors:

 State Health Insurance Program (SHIP) 1-800-792-8820 www.state.nj.us/health/senior/ship.shtml  NORWESCAP (Local Office for SHIP) 973-989-5773

Medicaid Medicaid is a needs-based health insurance available through Social Security Income (SSI), Division of Youth & Family Services (DYFS), Department of Developmental Disabilities (DDD), municipal welfare and the Office of Temporary Assistance (OTA).

Medicaid Home & Community- Based Waivers The loved one you care for may be over age 65 or have developed medical conditions that qualify as a disability. In addition to health insurance, Medicaid provides unique services to persons with a variety of disabilities through home and community-based waiver programs. The following is a list of some of the waiver programs available. You will need to contact each individual program to determine eligibility. As there are a number of waiver programs available in addition to the ones listed here, you should contact the Office of Temporary Assistance to determine if your loved one’s situation qualifies for a Medicaid waiver program.

 Morris County Office of Temporary Assistance (Medicaid Unit) 973-326-7878 www.morrishumanservices.org/hs/ AIDS Community Care Alternatives Program (“ACCAP”) This waiver is for those of any age with AIDS (Acquired Immunodeficiency Syndrome) and children up to age 13 who are HIV positive who are in need of institutional care and meet, at a minimum, the nursing facility level of care criteria. It provides full Medicaid benefits plus case management, private-duty nursing, medical day care, personal care assistant services, and hospice care. The purpose of the waiver is to help eligible individuals to remain in the community

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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or to return to the community, rather than be cared for in a nursing facility or a hospital setting.

 Morris County Office of Temporary Assistance (Medicaid Unit) 973-326-7878 www.morrishumanservices.org/hs/ Community Resources for People with Disabilities (CRPD) Medicaid Waiver This waiver is for children and adults with disabilities and/or visual impairments. It provides all Medicaid State Plan services, as well as case management services. Services include personal care assistant, home health, medications, durable medical equipment, and physician services. New Jersey has recently requested adding new services to this waiver, including environmental modifications and personal emergency response systems. For information:

 NJ Division of Disability Services 1-888-285-3036, or 609-588-2620 www.state.nj.us/humanservices/dds/ Traumatic Brain Injury (TBI) Medicaid Waiver This waiver is for people ages 18 to 65 with an acquired brain injury. It provides case management, counseling, community residential services, therapies, behavioral programs, environmental modifications, day programming, personal care assistant, transportation, respite care, night supervision, chore services, and companion services for those who qualify. For information:

 Morris County Office of Temporary Assistance (Medicaid Unit) 973-326-7878 www.morrishumanservices.org/hs/ Community Care Medicaid Waiver (CCW) This waiver is for individuals registered with the NJ Division of Developmental Disabilities (the disability had to have manifested before the age of 22), and provides case management, rehabilitation, individual supports, environmental and vehicle accessibility adaptation, personal emergency response system, and respite care. For more information:

 NJ Division of Developmental Disabilities, regional office 973-927-2600 www.state.nj.us/humanservices/ddd/index.html Global Options Medicaid Waiver On June 21, 2006 Governor Corzine signed the Independence, Dignity, and Choice in Long Term Care bill. This program was designed to enable Medicaid nursing home residents, who are medically appropriate, to return to the community by establishing a funding balance between nursing home care and community based care. New Jersey was a pilot state for this program, known as Global Options. Effective January 1, 2009, the following three Medicaid Waiver programs: Assisted Living, Caregiver Assistance Program (CAP) and Community Care Program for the Elderly & Disabled (CCPED), were consolidated into a single program now known as Global Options (GO) for Long Term Care.

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Who is Eligible for GO? An applicant must be 65 years or older or between the ages of 21 and 64 who shall be determined disabled * by Social Security Administration (SSA) or be determined disabled * by the Division of Medical Assistance and Health Services, Disability Review Section. Additionally, eligibility depends on whether there is an indication that the participant will need the level of care provided in a hospital, a nursing facility or an intermediate care facility in the near future (i.e, a month or less) unless he or she receives home and community-based services. * Individuals between the ages of 21 and 64 who are chronically mentally ill or developmentally disabled may be eligible after a service needs review by the DHSS/DHS Service Review Team. Are There Limits to GO Services? -- Yes. The service package is based on an assessment of the individual’s level of care needs and is developed in collaboration with a case/care manager. The service package builds on available supports, and takes into consideration the individual’s functional abilities, personal goals and preferences, risk factors, and availability of services. Who Provides these Services? -- Services may be provided by traditional Medicaid community agencies or new qualified non-traditional entities. All service providers must demonstrate competence in the service to be provided and must meet qualification requirements, which have been approved by the federal government. What Services May be Provided? -- GO participants are eligible for all New Jersey Title XIX Medicaid State Plan services authorized in a Plan of Care Community choice counseling is available for nursing home residents. If an individual would like information or to be considered for Global Options, he or she and family members should speak with their nursing home’s social worker or discharge planner to determine if they are eligible and if this alternative is appropriate for them.

 Morris County Office of Temporary Assistance (Medicaid Unit) 973-326-7878 www.morrishumanservices.org/hs/ Medicaid’s Personal Preference: Cash & Counseling Demonstration Project This is a national research and demonstration project sponsored by the Robert Wood Johnson Foundation to study the effects of allowing Medicaid recipients with disabilities who are eligible for Personal Care Assistance services to direct their own care. Through a monthly cash allowance, participants work with a consultant to develop a cash management plan by which they decide the services they need and the individuals and/or agencies they wish to hire to provide the identified services. The program requires greater consumer responsibility, but also offers participants greater control, flexibility, and choice. For more information:

 NJ Division of Disability Services 1-888-285-3036 www.state.nj.us/humanservices/dds/ © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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General Financial Planning Financial Planners Professional financial planners look at a person’s long-term financial goals, and analyze assets, income, investments, and personal concerns. From there, the financial planner will provide advice and plans on how to maximize returns and minimize expenses through investments and reinvestments. To find a planner:

 Financial Planning Association 1-800-647-6340 www.plannersearch.org  National Association of Personal Financial Advisors 1-800-366-2732 www.napfa.org  AARP www.aarp.org Bill-Paying Services If your loved one is no longer capable of handling his or her own finances, sometimes an option is to hire an individual to pay all of the bills. These professionals will ensure that anything that is billed to your loved one is taken care of. A bill paying service will submit a report to the power of attorney. This report will include all of the money necessary to pay the bills for that month as well as the service fee.

 Senior Cents Family Service of Morris County This Family Service of Morris County program is a money management and advocacy program for older adults and/or people with disabilities in Morris County. The program uses trained volunteers to enable older adults to control their finances and maintain their independence.

973-538-5260 www.fsmc.org  American Association of Daily Money Managers (AADMM) AADMM is a membership organization comprised of individuals who provide money management services. AADMM provides a listing of money managers by geographic area.

1-877-326-5991 www.aadmm.com

Financial & Tax Assistance/Savings Programs Temporary Assistance/General Assistance/Food Stamps This program provides a variety of financial, medical, and social services to persons/families who meet certain criteria, depending on family size, monthly income, and assets and resources.

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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For eligibility and benefits information, call your town’s Municipal Welfare Office, or:

 Morris County Office of Temporary Assistance 973-326-7800 www.morrishumanservices.org/hs/ New Jersey’s Homestead Property Relief Program The Homestead Credit/Rebate Program provides credits or rebates for homeowners and tenants who occupied their principal residence in New Jersey on October 1 of the year for which the credit applies, paid property taxes on that dwelling either directly or through rent, and whose gross income for the entire year does not exceed certain limits.

 Taxpayer Customer Service Center 609-292-6400 www.state.nj.us/treasury/taxation/ New Jersey’s Property Tax Reimbursement Program also known as the “Senior Freeze” This program reimburses eligible senior citizens and people with disabilities for property tax increases. The amount of the reimbursement is the difference between the amount of property taxes that were due and paid in the "base year" (the first year that all the eligibility requirements are met) and the amount due and paid in the current year for which the reimbursement is being claimed, provided the amount paid in the current year was greater. The applicant must meet all the eligibility requirements for the base year and for each succeeding year, up to and including the current year to qualify for the reimbursement.

 Taxpayer Customer Service Center 609-292-6400 www.state.nj.us/treasury/taxation/

Prescription Assistance/Savings Programs Pharmaceutical Assistance to the Aging and Disabled (PAAD) New Jersey’s PAAD program provides pharmaceutical assistance to residents 65 years of age or older or 18 years of age and older if receiving Social Security Disability benefits. This is a meansbased program. Single adults with annual income of less than $24,432 and married couples with annual income less than $29,956 in 2009 are eligible. Income eligibility changes annually. PAAD beneficiaries are also required to enroll in a Medicare Part D Prescription Drug Plan. They do not pay premiums, deductibles, or any out-of-pocket costs beyond the regular PAAD co-payment of $6.00 for generic drugs or $7.00 for brand name drugs. People eligible for PAAD are usually eligible for the Lifeline Program and the Hearing Aid Assistance to the Aging and Disabled Program (HAAAD).

 NJ Department of Health and Senior Services 1-800-792-9745 www.state.nj.us/health/seniorbenefits/services.shtml © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Senior Gold Another program of the New Jersey State Department of Health and Senior Services, this State-funded prescription program has a different co-payment structure and higher income eligibility requirements than PAAD. Members pay a co-payment of $15 plus 50% of the remaining cost of each covered prescription until they reach annual out-of-pocket expenses exceeding $2,000 for single persons or $3,000 for married couples. When they have exceeded their annual out-of-pocket expense, they pay only the flat $15 co-payment per prescription for the remainder of the year. There are other restrictions and coordination with other insurance benefits or Medicare Part D.

 NJ Department of Health and Senior Services 1-800-792-9745 www.state.nj.us/health/seniorbenefits/seniorgolddetail.shtml FamilyWize Prescription Drug Discount Card FamilyWize, in partnership with United Way, offers a free Prescription Drug Discount Card that can offer immediate savings on prescription drugs at participating pharmacies for people that have no health insurance, during deductible periods and for prescription medicine not covered by health insurance, Medicare or other benefit plans. It is not insurance, nor is it intended to replace insurance. It can save an average of up to 30% or more off the pharmacy's usual and customary retail price of prescription drugs, with the highest savings on generic drugs. The cost will be the discount price with the FamilyWize card or the pharmacy's usual and customary retail price, whichever is lower. For more information or to receive a card:





United Way of Morris County 973-993-1160, ext 108 www.LiveUnitedMorris.org/ourwork/heal_hliprojects.php or www.familywize.com

Pharmacy Owners Providers Services (POPS) Provides all residents of Morris County and dependents in the same house, not currently covered through any government sponsored or employer-based prescription insurance program, with savings of up to 50% on prescription medications. An annual, non-refundable membership fee of $20.00, or a 3-year fee of $40.00, is required. You may use POPS at any participating Morris County pharmacy. There are no age, income, or preexisting condition exclusions, no deductibles, no limits on quantities, and no forms to complete, except the initial application, along with proof of Morris County residency. For more information:

 Morris County Division on Aging, Disabilities & Veterans NJ EASE 1-800-564-4656 www.morrishumanservices.org/dvs/

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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RX4NJ Rx4NJ is a website designed to help low-income, uninsured New Jersey residents get free or discounted brand-name medicines. State agencies and community organizations worked together with America's pharmaceutical companies to develop Rx4NJ. If you have a hard time paying for your medications, you may be eligible for help in paying for your prescriptions. Rx4NJ makes it very easy to find out if you or a loved one qualify for assistance. Follow the on-screen step-by-step directions. Once you provide the website with some basic information related to prescription medicines, income, and current prescription medicine coverage, Rx4NJ will be able to tell you what patient assistance programs you may be eligible for. If you are eligible, you will receive an application that can be printed out and returned directly to the drug manufacturer for final approval, after your doctor has approved and signed it. For information:

 www.rx4nj.org 1-888-793-6765

Other Assistance/Savings Programs Hearing Aid Assistance to the Aged and Disabled (HAAAD) HAAAD provides a $100 reimbursement to eligible persons who purchase a hearing aid. Persons must meet the PAAD eligibility requirements.



NJ Department of Health and Senior Services 1-800-792-9745 www.state.nj.us/health/seniorbenefits/seniorgolddetail.shtml

Personal Assistance Services Program (PASP) Provides non-medical, consumer-directed home health care for persons with disabilities between the ages of 18 and 66 who are either in school, working, or volunteering in the community. To determine eligibility, or for more information:

 Morris County Office for the Disabled 973-285-6865 www.morrishumanservices.org/dvs/disabled.asp Telephone Verizon offers two assistance programs for phone service for people who are low income. Through Link Up America, eligible new customers receive a 50% discount on the initial phone connection charge, with the remaining 50% paid in 12 monthly installments. Through Communications Lifeline, existing Verizon residential customers may be eligible to receive discounted local telephone service. Communications Lifeline makes local telephone service available to people who might not be able to afford phone service. To see if your loved one is eligible for Link Up America or Communications Lifeline:

 1-888-337-3339

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Utilities Low Income Home Energy Assistance Program (LIHEAP) and Universal Service Fund (USF) The Low Income Home Energy Assistance Program (LIHEAP) is designed to help lowincome families and individuals meet home heating and medically necessary cooling costs. Applications are usually accepted between November 1 and April 30. To apply for LIHEAP, you will need to contact the authorized local community action agency or community based organization in your area. To be eligible for LIHEAP benefits, the applicant household must be responsible for home heating or cooling costs, either directly or included in the rent; and have gross income at or below 225% of the federal poverty level. Persons who live in public housing and/or receive rental assistance are not eligible unless they pay for their own heating/cooling costs directly to the fuel supplier. The amount of the LIHEAP heating benefit is determined by income, household size, fuel type, and heating region. See website noted below to find LIHEAP income eligibility levels. Please Note: The LIHEAP application is also an application for the Universal Service Fund Program (USF). You apply for two benefit programs at the same time using one application. USF is a program created by the State of New Jersey to help make natural gas and electric bills more affordable for low-income households. If you are eligible, USF can lower the amount you pay for gas and electricity. To be eligible, a household gross income must be at or below 175% of the Federal Poverty Level and pay more than 3% of its annual income for electric, or more than 3% for natural gas. If a household has electric heat, it must spend more than 6% of its annual income on electricity to be eligible.

For more information about USF:  1-866-240-1347 For further information on LIHEAP or to locate the nearest application agency:  1-800-510-3102 www.energyassistance.nj.gov

Lifeline Utility Assistance Lifeline is a utility assistance program that offers a $225 credit on electric and gas utility bills for persons who meet the PAAD eligibility requirements or who receive SSI.

 NJ Department of Health and Senior Services 1-800-792-9745 www.state.nj.us/health/seniorbenefits/lifeline.shtml

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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New Jersey SHARES A statewide, nonprofit 501(c)(3) organization which provides grants to pay the utility bills of households in need through a statewide network of more than 100 community-based social service agencies. For information on applying for assistance:

 1-866-NJSHARES www.njshares.org/ NJ Hospital Care Payment Assistance Program (Charity Care Assistance) This program offers free or reduced charge care to patients who receive inpatient and outpatient services at acute care hospitals throughout the State of New Jersey. Hospital assistance and reduced charge care are available only for necessary hospital care. Some services such as physician fees, anesthesiology fees, radiology interpretation, and outpatient prescriptions are separate from hospital charges and may not be eligible for reduction. Hospital care payment assistance is available to residents who: • • •

Have no health coverage or have coverage that pays only part of the bill: and Are ineligible for any private or government sponsored coverage (such as Medicaid); and Meet both income and assets eligibility criteria.

For information on eligibility and on how to apply:

 NJ Department of Health & Human Services 1-866-588-5696 www.state.nj.us/health/cc/ Veterans An individual with a disability who is a veteran or whose parent or spouse is or was a veteran, may be eligible for monthly cash payments, assistance with educational costs, medical care, vocational assistance, rehabilitation, or other benefits. In addition, a veteran who is disabled may be eligible for grants for specifically adapted housing. For more information:

 Morris County Veteran’s Services Office 1-800-564-4656 or 973-285-6866 www.morrishumanservices.org/dvs/  Veterans’ Affairs Hotline 1-800-624-0508 www.va.gov

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Long Term Care Insurance About 44% of all people age 65 and older will need nursing home care at some point in their lives. The average age for entering a nursing home is 83. One-third of those who enter a nursing home will stay three months or less, and 20% will stay about a year. The balance of older adults, or about one half, will remain in a nursing home more than a year, at a current cost of about $100,000 per year. Private insurance can play a vital role in protecting against what, for some, can become an economic catastrophe. Often, at the point when caregiving is necessary, the opportunity to insure for long term coverage to help cover nursing home costs has passed, and the person needing care is deemed “uninsurable.” As a caregiver, you should become aware of the conditions of coverage of the insurance carried by the person you care for. Key things to watch for include: • • • •

• • • • • •

waiting periods, policy requirements for Medicare approval, what, if any, limits exist on daily medical benefits, what are benefit coverages for: o Alzheimer’s, o respite care, o skilled, intermediate or custodial care, types of care facilities covered or not covered, are in-home services covered, coverages for assisted living or community senior center, ability to use benefit for care within a nursing home or facility, benefits for personal grooming, ability to upgrade to higher benefits or less restrictive coverage, protection against inflation.

A periodic review of all insurance coverages is always recommended.

As a caregiver, it is a good idea to be familiar with all your loved one’s key financial and insurance information, and to keep copies of important documents, including those submitted to assistance programs. Take time to review insurance coverages, including home, auto, health, disability, and life, and keep records that include location where actual policies are kept, and current contact information for each applicable agent. Keep all records in an easily accessible place, and be sure to share with another family member where this important information can be found.

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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8. Legal Matters Relating to Aging Loved Ones A list of key legal terms relating to caring for an aging loved one can be found in Appendix C.

The following is intended as a general informational overview of legal issues that caregivers should consider as they care for their loved one, and does not constitute legal advice. For specific legal advice, always seek professional counsel. It is important that the person for whom you provide care understands his or her legal rights, and that they take the necessary steps to protect themselves and their interests. Depending on circumstances, it may be important for you as the caregiver to be involved as well in legal matters. Of course, the depth of your involvement may change as care needs increase.

Legal Services Some free civil legal services are available to low-income seniors through:

 Legal Services of Northwest Jersey (LSNWJ) Morris County Office

973-285-6911 www.lsnj.org/lsnwj/index.htm

Elder Law Elder law is a new and fast growing area of the law, and deals with the varied legal issues faced by the aging population and their caregivers. It combines elements of estate planning, trusts, wills, guardianship, power of attorney, advanced medical directives, eligibility for government programs and benefits, housing, finance, rights of the aging, and other issues which confront all of us as we age. A good first step in locating an elder law attorney in your area would be to contact:

National Academy of Elder Law Attorneys The National Academy of Elder Law Attorneys (NAELA) is an organization of attorneys in the private and public sectors who deal with legal issues affecting older adults and people with disabilities. Their website includes a section to help locate an elder law attorney in your area.

 http://naela.org/Applications/ConsumerDirectory/index.cfm

Legal Capacity A starting point for legal documents is having the mental capability to understand the meaning and importance of these documents. Stated differently, legal capacity is the level of judgment and decision-making needed to create legally binding wills, trusts, and powers of attorney. © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Key Legal Documents & Issues Power of Attorney A power of attorney is a legal document transferring decision-making authority to a person designated by your loved one in advance. The power can be related to the management of your loved one’s property or related to decisions about medical treatment. The power can be a “durable power,” meaning that it continues in the event of disability, or a “springing power,” meaning it takes legal effect only after disability. Unlike many other uses of the term “disability” - which might refer to a physical handicap, when the term is used within a Power of Attorney, “disability” means lacking mental capability to manage property or make decisions about medical treatment. A person in a coma would be a clear example of someone who is disabled and unable to make a decision independently. Caregivers should be aware of what, who, and where powers of attorney have been provided. These documents should be current, accessible, and understood by the caregiver.

Power of Attorney over Medical Decisions The Power of Attorney over Medical Decisions appoints a person to represent your loved one in making his or her medical decisions. It defines the limits and extent of such power. Other terms used to describe a power of attorney over medical decisions are “power of attorney for health decisions”, “health care proxy”, “medical directive”, and “advanced directive for health care”. Caregivers should also be aware of some key laws governing medical directives. The Patient Self Determination Act ensures that all adult patients know the extent of their right to control health care decisions, particularly through the use of health care directives. A living will is a type of advanced directive related to medical decisions for the terminally ill. The living will comes into play when a person’s condition is terminal with no expectation of recovery. The living will sets forth the type of medical care, the extent of life support, the possible removal of life support and instructions as to how and where your loved one would like to be cared in the final stage of life. The New Jersey Advance Directives for Health Care Act requires a doctor or hospital to make an affirmative inquiry to find out if your loved one has any advanced directives. Finally, make sure that all those named in your loved one’s power of attorney are aware, have a copy of the document and have access to the original should they need to act for your loved one under that power. Also, make sure to have one or two back-ups named on these documents.

Living Will A living will, as mentioned above, is a type of directive providing comprehensive instruction as to the medical situations where a patient would want to be kept alive and what measures should or should not be used to prolong life or delay death. A living will is a critical legal document for you, the caregiver, as it clearly articulates the wishes of your loved one. Without such instruction, you could be left speculating as to how, when and to what extent your loved one wants medical means to continue or not continue his or her life. Your loved one’s guidance is most instructive and important. His or her directions go a long way to help ease your burden in carrying out decisions that your loved one may not be able to make independently. © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Will Elder planning often starts with a will, an important document in any elder plan. Caregivers should be familiar with the uses of a will. A will is the written statement of a person’s wishes as to the disposition of his or her property following death. It takes effect upon death. Up until death (providing mental capacity as discussed above), a will can be amended or revoked. The person executing the will is known as the “testator.” To make a valid will, the person must possess the mental capacity to know what he or she is doing. It is not an excessively high standard of “awareness” but does require awareness of some essential facts. For example, does the person know if they are married and if their spouse is alive? If they have children, can they name them, know approximately how old they are and where they live? Do they know, roughly, what they own, such as houses and bank accounts, and do they understand that the purpose of a will is to leave the things they own to the person whom they name in the will? If the person cannot be conversant about such basic facts, more than likely they do not have the mental capacity to execute, modify, or rescind a will. Capacity is measured at the time a person makes and signs his or her will. This is important as many elders, who may be beginning to lose mental capacity, may have good days and bad days. So long as the person makes the will or changes to the will on a day in which they had mental capacity to understand what they were generally doing, and this can be later proven, then the legal system will uphold the wishes of the “testator.” A will accomplishes a number of important issues. A will allows for the nomination of an executor; without a will, the state would determine who is to serve as executor of your loved one’s estate. A will avoids “intestacy.” Intestacy is where, in the absence of a will, state law dictates who inherits a person’s probate assets. A will allows a person to define who gets what property. Often a person wants to provide a specific person with a specific item of property. A will allows for such special bequests. A person may want to distribute property unequally to children, as children often have different needs; a will allows for such unequal distributions. A person may want to disinherit a natural heir; a will allows for disinheritance. A will allows for the nomination of a guardian or trustee, if the person dies with minor children. As stated above, a will dictates who inherits your loved one’s “probate assets.” Not all assets are “probate assets.” That depends upon how the assets are owned. Assets which are “not” probate assets pass directly to the person named as “beneficiary” or co-owner of the asset. Examples of assets which could pass directly and avoid probate would be joint accounts, assets in a revocable living trust, pay-on-death accounts, transfer-on-death accounts, annuities with a named beneficiary, life insurance with a named beneficiary, certificates of deposits with a named beneficiary, individual retirement accounts with a named beneficiary, and assets owned “tenancy by entireties.”

It is important to note that many of these assets have a “named beneficiary,” which should be reviewed annually as life changes.

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Trusts A trust is a contractual three party arrangement where one person transfers property to another person to hold in trust for the benefit of a third person. While that may sound confusing, a properly designed trust accomplishes as much as a will, while providing a greater flexibility for life and estate planning. A trust may be “revocable” or “irrevocable.” A trust may exist while you are alive (living trust) or created via a will (testamentary trust).

Irrevocable Trust An irrevocable trust cannot be amended or changed. The person transferring the property (the “trustor”) cannot later change his or her mind. There are many tax and planning reasons why a person would transfer property through an irrevocable trust.

Revocable Trust A “revocable” trust can, by its definition, be amended or changed. Like a will, the person transferring the property can change his or her mind or change the terms of the trust. It is completely flexible. As such, a revocable trust serves a wide variety of needs related to lifetime planning, extending control over your estate following death and minimizing succession transfer costs, such as probate avoidance and reduction of estate taxes. For a trust to be “living,” it must be what is called “funded.” This simply means that the “grantor” has transferred assets currently owned into the trust. It makes little sense to create a “living trust” and then not transfer or convey the ownership of property into the trust. Examples of property to be placed or funded into a living trust would be real estate, annuities, stocks, bonds, and bank accounts. Vehicles can be owned by the trust depending on the situation. Special tax deferred investment accounts such as IRAs and pension rights are usually not owned by a revocable living trust. A revocable living trust does all that a will does, plus more. It allows for the continued management of your loved one’s assets should he or she become disabled. A trust avoids the need, delay, and cost of probate. A will becomes a public document; a trust does not and, thus, is a great way to keep your affairs private.

Guardianship When no advance directive exists and a person becomes unable to manage his or her personal or property affairs – life’s decisions, including medical decisions, come to a halt. In that situation, the caregiver, or other involved individuals/organizations, must go to the Court and petition for a Letter of Guardianship. Guardianship is basically Court supervised decision-making by another person. Guardianship takes two forms. A guardian of the property has authority to manage the financial affairs for the older adult or person with a disability. A guardian of the person has authority to make health care decisions for the older adult or person with a disability. New Jersey sets forth a priority of persons who may serve as guardian, with the spouse or next of kin first in line for consideration. Appointment of a guardian is a Court process governed by statute. It requires a Complaint often filed by a family member (“petitioner”), two doctors stating the person is mentally unable to handle his or her own affairs, a court appointed attorney to represent the elder, and the petitioner’s attorney. Then a hearing will be scheduled. Following the hearing, a judge will rule on the Complaint and if appropriate, issue a judgment appointing guardianship. If at some later time, the person gains the capacity to manage his or her affairs, the guardianship can and should be terminated.

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Burial Fund A burial fund is money set aside to pay for burial expenses. This money can be in a bank account, other financial instrument, or a prepaid burial arrangement. This can be helpful to eliminate emotional stress and financial burden on a caregiver, or other family member at the time of a person’s death. The maximum dollar amount allowed in a burial account is $1500 per person.

A resource for information on funeral arrangements is www.aarp.org/families/grief-loss/

Probate: Made Simple The following section is intended to provide a broad overview of the necessary steps you would need to take following the death of a family member. The section is written from the perspective of the person named as Executor. The Executor is the person named in a will who is responsible for ensuring the wishes of the deceased are followed, debts and taxes are paid, and the estate is distributed to the proper beneficiaries. Perhaps a starting point is “ownership.” Everyone owns something. As an owner of property, real or personal, you have what lawyers call an “estate.” Real property is land and buildings. Personal property is everything else such as bank accounts, stocks, bonds furniture, money, life insurance, automobiles, jewelry, and all other personal effects. It is your right, as an owner of property, to select whom this should be given to upon your death. There are several ways to make such selection. You can write a will, you can create a trust, you can jointly own property, or you can name a beneficiary for each asset. If you do none of the above, upon your death no one knows what property you would want to go to whom. At that point, state law enters the picture and, using the County Surrogate’s office, an administrator is appointed and property is distributed according to state law.

How to Probate a Will: Probate is the process that permits the transfer of your assets as directed by your will. Under New Jersey law, a will may be admitted to probate ten days after the date of death. To submit a will to probate, one goes to the County Surrogate with the original will, a raised seal copy of the death certificate, contact information for the executor, and contact information for the next of kin and each named beneficiary. It is best to call ahead to find out the specific procedure as process varies county by county. A will is a legal document. Upon death, the will directs how and to whom your property should be given. A will must name an executor. An executor is legally empowered to manage another person’s money, therefore, the law requires the executor to accept a “fiduciary” duty to both the estate and the beneficiaries of the estate. This is a high legal standard of care and thus the executor should always take great care and maintain detailed records. There are three types of wills: standard, self-proving, and holographic. Most wills today are selfproving wills, meaning two witnesses watched the will signing and then in front of each other and in front of a notary, they also signed the will. The advantage of a ‘self-proving will’ is at time of probate the witnesses do not have to physically appear before the surrogate court. With a standard will, state law requires witnesses to appear before the surrogate in order to have the will admitted to probate. This can cause much delay in the probate process. A holographic will has no witnesses, is written by hand, and is most subject to being contested and time delayed.

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Whatever type of will is executed, it should be kept in a safe place accessible upon the testator’s death. Family members, those close to the testator and most importantly, the person named as executor should be aware of the will and where it is kept. It is important to be aware that unless it is properly prepared, a will is not effective. Individuals should not write their own will unless they are knowledgeable about the legal requirements for an enforceable will. Upon death, there are certain basic steps which need to be taken by the executor:

• •

• •

Locate the original will. Present a raised seal death certificate, names and addresses of all persons named in the will, and names and address of next of kin to the Surrogate. If the will is selfproving, it can be probated in a very short time. If the will is not self-proving, one of the witnesses to the will must come in to the Surrogate’s office or present proof of their signature. The Court will issue the Executor’s Certificate and Letters Testamentary. These documents legally appoint the executor as administrator for the estate. Within sixty days of the will’s probation, the executor must notify all heirs and beneficiaries named in the will with proof sent to the Surrogate’s Court of the testator’s death.

Executor Duties: After the will is probated and the Surrogate has issued both the Executor’s Certificate and Letters Testamentary, the executor is ready to begin carrying out his or her responsibility of safeguarding the property, paying expenses and taxes, and distributing the remainder of the estate to named beneficiaries. Here are some simple suggested steps: •

Set up a system to keep track of all the paperwork which will shortly come your way.

•

Find records such as annuity policies, bank statements, birth certificates, account statements, checkbooks, credit card statements, health insurance policies, investment records, life insurance policies, marriage license, military service records, pension records, real estate deeds, registration for cars and boats, retirements account statements, social security records, tax returns, W-2 forms, and other such documents.

•

Order copies of the death certificate – the funeral home will be helpful. A death certificate will be required as official evidence of death when closing down financial accounts, filing claim benefits, life insurance claims and settling real estate.

•

Follow the will’s instructions – a typical will doesn’t contain many specific directions. Rather, most wills set forth a broad list of powers. However, carefully read the will and if it contains specific instructions, you must follow them.

•

Set up an Estate or Trust Bank Account – once you have been appointed executor, you will want to open a bank account in the name of the estate. This account will need its own taxpayer ID number for the IRS. Once opened, you can transfer the decedent’s bank accounts into it. You may have to secure certain tax waivers from the State of New Jersey. You can use this account to pay debts, taxes and expenses of administration. Keep good records of all transactions.

•

Don’t take risks – when it comes to managing property and investments, you must act with prudence which means reasonable skill and caution. Your goal is to safeguard the property until it can be distributed to the name beneficiary. That is part of your fiduciary responsibility. Put the estate first and be fair to all beneficiaries.

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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•

Keep estate assets separate from your own. It is never acceptable for you to mix estate assets with your own assets. All income generated by the estate must go into the estate checking account. Estate assets can never be used personally by you even if you intend to pay them back.

•

Send notifications of death. Check the decedent’s calendar and cancel appointments. Draft a form letter and notify banks, charities, credit card companies, health care providers, former employers, insurance companies, landlords, membership organizations, subscriptions, pension payers, post office, social groups, state government, veteran groups, and volunteer organizations.

•

Call Social Security as soon as practical (1-800-772-1213) and return the Social Security payment for the month of death.

•

Keep property secure. The executor is responsible for making sure that the deceased person’s property remains safe until it can be transferred to the people who will inherit it. Real estate and automobiles should be of particular attention.

Taxes: 1. State Inheritance Tax: The New Jersey Transfer Inheritance Tax has four classifications of beneficiaries. Spouse, children, step-children, grandchildren, parents and grandparents are Class A beneficiaries not subject to state inheritance tax. Charities and not-for-profits are Class E beneficiaries not subject to state inheritance tax. Siblings and sibling in-laws are exempt for the first $25,000 and others are subject to inheritance tax for amounts over $500. 2. Estate Tax: Estates subject to estate tax should seek professional tax and accounting advice. Estates valued at over $675,000 are subject to New Jersey Estate Tax and estates valued at over $2,000,000 are subject to Federal Estate Tax. 3. Income Tax: The executor is required to file a final income tax return for the deceased. The deceased’s estate may also be responsible for filing an estate trust tax return. The executor is responsible for ensuring all income is reported, taxes paid, and appropriate returns filed on a timely basis. Conclusion: This overview is very general, and many items of estate administration have not been covered. For example, individual situations may include other issues like administration of a trust, children under 18 years of age, property that does not go through probate, transferring joint tenancy and other survivorship property, claiming monies from retirement plans, special procedures for small estates, and handling bypass trusts. For these and other issues, professional advice is strongly recommended.

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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9. Day & Home Care Programs for Aging Loved Ones The following is an overview of Adult Day Care, Home Care, and Hospice programs. There are a variety of resources available, including private pay services and services that are subsidized for those who qualify. Again, good places to start when looking for resources in Morris County are:



Morris County Division on Aging, Disabilities & Veterans/NJ EASE 1-800-564-4656 (Ask for free copy of their Morris County Caregiver Guide) www.morrishumanservices.org/dvs/



2-1-1 First Call for Help Dial 2-1-1, or 1-800-435-7555 www.NJ211.org

Adult Day Programs Adult Day Programs are also known as “adult day services.” There are three types of day programs: Medical Day Care, Social Day Care, and Gero-Psychiatric Care. Each type of service provides care with a planned program of activities designed to promote wellbeing through social activities and/or health related services for adults who are isolated or need assistance in activities of daily living. These services operate during the day. Lunch is usually provided. In some cases, transportation to and from the facility is also available. Payment for services includes private payment and, in some instances, Medicaid.

Medical Day Care These programs provide medical services ranging from preventative and therapeutic to diagnostic and rehabilitative. Medical day care facilities for older adults are licensed and regulated by the New Jersey State Department of Health and Senior Services.

Social Day Care These programs are centered on the goal of independence for your loved one. Social activities such as exercise, arts and crafts, and lectures are aimed at improving the participant’s social, physical, and emotional well-being.

Gero-psychiatric Care Some adult day care programs are specifically designed for aging individuals diagnosed with Alzheimer’s disease or dementia, and have specially trained staff.

Home Care Options Home care allows older people to remain in their own homes while receiving the assistance they need to help them remain independent. Services are delivered at home to people who are recovering, disabled, chronically or terminally ill and in need of medical, nursing, social, or therapeutic treatment and/or assistance with the essential activities of daily living. Generally, home care is appropriate whenever a person prefers to stay at home but needs ongoing care that cannot easily or effectively be provided solely by the caregiver and circle of friends. Services may be provided as frequently as needed, ranging from weekly visits to 24-hour stays. Accepted payment methods include private pay, commercial insurance and Medicare or Medicaid.

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Home Care Agencies These agencies provide personal care (bathing, dressing, toileting,) meal preparation, household chores and supervision. These services are available by a certified home health aide on an hourly basis or as a 24 hour live-in and are generally paid privately.

Home Health Care Coverage Home health care may be covered under Medicare, Medicaid, private pay, or insurance. A person qualifies for these services if they have a “skilled need” for a nurse or rehab therapist (physical, occupational, speech therapist). These skilled services generally last a short time (6-8 weeks). A home health aide may also come for a short visit to provide personal care during this time. Often these services are ordered when your loved one comes home from the hospital, but they can also be ordered by your loved one’s doctor in order to prevent a hospitalization.

Hospice Hospice is a program of care for terminally ill patients and their families that takes place in the home, a nursing home, or dedicated hospice unit. The goal is to provide physical, emotional, and spiritual support with a dignified, peaceful approach to comfort in the final months of life, regardless of disease. Hospice care is covered under Medicare, Medicaid, and most private insurance. No one is denied hospice care because of an inability to pay. For information:

 New Jersey Hospice & Palliative Care Organization 908-233-0060 www.njhospice.org/  2-1-1 First Call for Help Dial 2-1-1, or 1-800-435-7555 www.NJ211.org  National Hospice and Palliative Care Organization Information on end-of-life issues and state-specific advance directives.

703-837-1500 www.nhpco.org Non-Medical Companion Agencies These agencies are designed for individuals who need minimal care. These services will typically provide personal services in the home, relating to daily activities such as dressing, cooking, medication supervision, cleaning and transportation. These services are paid privately.

Nutrition Programs There are 15 “Midday Friendship Centers” located throughout Morris County, providing a hot mid-day meal and the opportunity to socialize with others. For those who are homebound, meals can be delivered.

 Morris County Nutrition Project 973-285-6856 www.morrishumanservices.org/dvs/

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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10. Employment & Volunteering for Aging Loved Ones Studies show that remaining active and engaged in a variety of activities has a positive impact on physical and mental health. Your aging loved one may find that volunteering or working, even for relatively small amounts of time each week, provides a sense of independence and an uplifting change of pace.

Senior Community Service Employment Program (SCSEP) The Senior Community Service Employment Program (SCSEP) is administered under New Jersey’s One Stop Programs and Services known as WorkForce 55+. The main objective of the Workforce 55+ SCSEP is to bring together the talents of older workers and the unmet needs of communities by providing income and gainful part-time subsidized work activities for low income, older persons. For more information:

 New Jersey Department of Labor and Workforce Development Division of One Stop Programs and Services 609-943-5107 http://lwd.state.nj.us/labor/wnjpin/findjob/onestop/OlderWorker.html Volunteering Morris County offers various volunteering opportunities through local senior centers, Volunteer Management Center, Inc. (VMC) and the NORWESCAP RSVP program. These provide opportunities for older adults to connect with other members of the community and share their skills and experiences. For more information:

 Volunteer Management Center, Inc. (VMC) 973-538-7200 www.vmcnj.org  NORWESCAP 973-989-5773 www.norwescap.org/

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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11. Housing for Aging Loved Ones Types of Housing Independent Full-Service Communities Also known as retirement living, independent living or congregate care. Independent living communities feature private apartments with 24-hour supervision, and are designed specifically for independent senior adults with few medical problems. Services may include meals, laundry, housekeeping, and social activities. Only private pay is accepted in these communities.

Assisted Living Assisted Living provides a combination of residential housing, personalized supportive services, and health care designed for the individual needs of those requiring help with activities of daily living, but who do NOT require the medical attention offered at a nursing home. Assisted living generally offers the resident more autonomy, privacy, and participation in care decisions than do nursing homes. Most communities provide daily activities, meals, laundry, housekeeping services, and 24-hour staff. Units are offered in various sizes and prices to meet individual budgets and needs. Methods of payment include private pay, and, in limited instances, Medicaid.

Continuing Care Retirement Communities Continuing Care Retirement Communities, also known as Life Care Communities, are residential campuses that provide a continuum of care from independent units to assisted living to full nursing care, all in one location. They guarantee the senior lifelong residence, allowing him or her to progress through the stages of care as needed.

Nursing Homes Nursing homes are also known as convalescent care, nursing centers, and long term care facilities. They provide room and board, protection, supervision, and 24-hour medical care. There are three types of nursing care; basic care, skilled care, and sub-acute care (after hospitalization, short term medical care.) Facilities are licensed and regulated by the State Department of Public Health, and accept a variety of payment options including Medicare, Medicaid, private insurance, and private funds. Legal Services of Northwest Jersey provides a comprehensive guide addressing landlord and tenants rights. To receive a copy: 973-285-6911

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Public Housing The largest group of affordable units is public housing. Housing authorities administer this federal program. New Jersey has about 100 housing authorities. Housing authorities get federal funds to build and run public housing developments. Most have rental units, but some have houses for sale. Rents and sale prices depend on household income and can be no more than 30% of adjusted earnings. People who live in public housing earn less than 80% of median family income. Federal rules require housing authorities to keep a certain percentage of these units for very low-income households, earning 50% or less than median family income. Some housing authorities must reserve units for extremely low-income households with earnings at or below 30% of median. Use federal income standards to determine eligibility. All rental units must be within Fair Market Rent. Housing authorities often have waiting lists, depending on local conditions. Public housing authorities may give priority to people who live or work in the communities they serve. The people who operate these authorities are an excellent resource. They know the local housing market and are aware of other programs and opportunities that might be available. The following are County and Municipal Housing Authorities in Morris County:     

Boonton Housing Authority: Dover Housing Authority: Madison Housing Authority: Morris County Housing Authority: Morristown Housing Authority:

973-335-0846 973-361-9444 973-377-0258 973-540-0389 973-538-6343

Rental Vouchers Rental vouchers are available to individuals and families who are low- or very low-income. To determine whether your loved one meets these income criteria, consult the HUD published “Income Limits” page on the HUD website: www.huduser.org/datasets/il.html The income limits change every year. Some New Jersey programs use income limits published by the Council on Affordable Housing (COAH) – these numbers are similar to HUD’s, but slightly different: www.state.nj.us/dca/affiliates/coah/reports/incomelimits.pdf Some voucher programs have “set-asides” for those who are considered low or moderate income (below 80% of the Area Median Income), those who have special needs (such as a mental illness) and those over age 62. If your loved one falls into any of these categories, ask for information on programs specific to that group(s). There are two types of rental vouchers – those that are tenant based and those that are project based: Tenant based vouchers are provided directly to the tenant, and allow the tenant to pay a portion of their income toward rent. The amounts vary by program, but typically, the tenant pays 30% - 40% of the monthly household income toward rent and utilities – the remaining rent is paid directly to the landlord from the subsidy provider. When the tenant moves, the voucher can be transferred to another rental unit.

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Agencies often have waiting lists for vouchers. Depending on the length of the lists, the agency may “close” the list until the number falls beneath a certain threshold. Assuming that you will be placed on a waiting list, it is advised that you contact as many of the agencies that you can. There is no penalty for being on more than one list (but ultimately, you can only accept one voucher). Each agency may represent a different geography and/or type of housing. The following agencies offer tenant based vouchers:      

Boonton Housing Authority: 973-335-0846 Dover Housing Authority: 973-361-9444 Madison Housing Authority: 973-377-0258 Morris County Housing Authority: 973-540-0389 Morristown Housing Authority: 973-538-6343 NJ Dept. of Community Affairs 609-292-4080 www.state.nj.us/dca/divisions/dhcr/offices/srap.html

Project based vouchers are attached to the property, which means a tenant is entitled to the rental subsidy for as long as they live in that unit. When a tenant moves, the voucher is given to the next tenant in that unit. Tenants pay 25% - 40% of monthly household income toward rent and utilities, depending on the subsidy program attached to the project. Be prepared that most have waiting lists, and consider having your loved one place his or her name on as many agency lists as appropriate, based on geography and housing type desired.

Senior Apartments Senior apartments are generally rental units in the form of garden apartments, attached housing, or apartments in high-rise or mid-rise buildings. In some buildings, recreational activities, meals, housekeeping, and transportation may be provided. For more information on the various types of facilities in Morris County:

 Morris County Division on Aging, Disabilities & Veterans NJ EASE 1-800-564-4656

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Other Housing Programs Homelessness Prevention Program Provides limited financial assistance to low- and moderate-income tenants and homeowners in imminent danger of eviction or foreclosure due to temporary financial problems beyond their control. Funds are used to disburse payments in the forms of loans and grants to landlords and mortgage companies on behalf of eligible households in danger of homelessness.

 NJ Department of Community Affairs 609-633-0973 or 1-866-889-6270 www.state.nj.us/dca/divisions/dhcr/offices/ha.html Homelessness Prevention and Rapid Re-Housing Program This new program, part of the American Recovery and Reinvestment Act of 2009, is a three year program, offering assistance to individuals and families who are either at risk of becoming homeless or are homeless but are likely to achieve stable housing with this assistance.

 Morris County Office of Temporary Assistance 973-829-8176 www.MorrisCommunityDevelopment.org Morris County Housing Rehab Program This homeowner rehab program serves to maintain affordable housing by enabling homeowners, experiencing major systems’ failures, e.g., failing septic, furnace, inferior roof, to remain in their homes.

 Morris County Division of Community Development 973-285-6060 www.MorrisCommunityDevelopment.org New Jersey Housing and Mortgage Finance Agency The New Jersey Housing and Mortgage Finance Agency (HMFA) has many housing programs funded from the sale of bonds. Some provide mortgage assistance and closing costs to homebuyers. Others help homeowners repair the houses they already own. Those looking to buy a house or condominium should consider calling HMFA to see about the availability of homebuyer assistance programs. For information on HMFA’s programs:

 HMFA 609-278-7400  HMFA Mortgage Hotline 1-800-NJ-HOUSE 1-800-654-6873 © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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12. Transportation Information for Aging Loved Ones For many individuals transportation is a vital link to independence, services, and socialization. There are a variety of options for your aging loved one.

2-1-1 First Call for Help 2-1-1 First Call for Help now operates statewide, connecting people with the resources they need to solve common life problems, including transportation. It is staffed 24/7 and can be accessed by dialing 2-1-1.

 Dial 2-1-1, or 1-800-435-7555 www.NJ211.org Morris County Public Transportation The Morris County Department of Transportation can provide you with a free Transit Guide of the Morris County public transportation system. Their website offers you with transportation information and alternatives, including rail, bus, paratransit, park-and-rides, bicycle and pedestrian travel, and ridesharing. Numerous links to other transportation resources are available on this website.

 973-829-8101 www.morrisdot.org NJ Transit NJ Transit provides reduced fares for senior citizens and those with a permanent disability. Senior citizens and passengers with disabilities can travel on-board NJ TRANSIT trains, buses, and light rail vehicles at a reduced fare of one-half the regular one-way fare or lower. Seniors and passengers with disabilities must present a NJ TRANSIT Reduced Fare ID or Medicare Card to obtain the reduced fare ticket. To receive discounted fares, a NJ TRANSIT Reduced Fare Card/Reduced Fare ID application must be submitted. A Social Security Card and proof of age (a birth certificate or a driver's license) must be presented when applying. Applications can be found at most local banks, savings and loan associations, or county Offices on Aging. Applications are also available at the NJ TRANSIT Customer Service offices at Newark Penn Station, New York Penn Station, Hoboken Terminal, and the Port Authority Bus Terminal. An application can also be mailed to you. For more information:  NJ TRANSIT Reduced Fare Office 973-378-6401

www.njtransit.com/sf/sf_servlet.srv?hdnPageAction=ReducedFareTo © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Access Link NJ Transit also provides paratransit services for those people who have a disability that prevents them from using the local fixed route bus service. This service is called Access Link and eligibility is determined using the three categories provided in the ADA. Your loved one may be eligible for Access Link if: 1. If he or she cannot get on or off a bus or ride in an accessible bus due to a disability 2. If his or her disability prevents him/her from getting to a bus stop 3. If accessible bus service is not available in his or her area The cost of this service is the cost of the usual bus fare to your destination. To apply for Access Link an assessment is necessary. Transportation can be provided for the assessment appointment. To arrange for an assessment:

 NJ Transit 800-955-2321 TTY 800-955-6765 www.njtransit.com/tm/tm_servlet.srv?hdnPageAction=AccessibleServicesTo Handicapped Parking Passes Handicapped parking passes are available for drivers who have lost the use of one or more limbs or are permanently disabled and cannot move without an assisting device or those who transport individuals with such disabilities on a regular basis. For more information:

 NJ Motor Vehicle Commission 609-292-6500 http://www.state.nj.us/mvc/Vehicle/HandicappedPlates.htm MAPS MAPS (Morris Area Paratransit Services) is administered by the Morris County Division on Seniors, Disabilities and Veterans, and provides transportation to medical appointments, education or employment sites, adult day care centers, and other locations. Most MAPS vehicles are able to accommodate wheelchairs. Your loved one may use MAPS if he or she is a Morris County resident and is age 60 or above, OR if he or she has a physical or mental disability that includes functional limitations. MAPS must be notified in advance if a caregiver will be traveling with the resident. For more information:  1-888-282-MAPS (6277)

www.morrishumanservices.org/dvs/ TransOptions As the Transportation Management Association (TMA) for northwest New Jersey, TransOptions assists commuters, businesses, and local municipalities in Morris, Sussex and Warren Counties, as well as towns in suburban Essex, Passaic, and Union Counties with multiple commute options. TransOptions is available to assist your loved one with transportation issues or questions regarding services in his or her area.

 973-267-7600 www.transoptions.org © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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American Red Cross of Northwest, NJ Provides transportation for veterans to medical appointments and VA hospitals. For more information:

 973-538-2160 Daughters of Israel, West Orange, NJ Provides limited fee for service transportation through their Metro Transport Program for eligible seniors and people with disabilities. In Morris County, service is only available to Parsippany, East Hanover, Florham Park, Morristown, and Whippany. For information:

 973-325-1359 Dial-A-Ride Dial-A-Ride is municipally-sponsored local transportation for senior citizens and persons with disabilities. Many towns in Morris County offer Dial-A-Ride service. For a list of municipalities with phone numbers, visit:

 www.co.morris.nj.us/transportation/spectrans/spectrans-dialaride.asp FISH (Friends in Service to Humanity) Volunteers provide rides, primarily to and from medical appointments.  For Mendham Borough and Township residents only: 973-543-4574

Morris on the Move (M.O.M.) M.O.M. can provide transportation for up to 18 passengers and two wheelchairs. Priority is given to public assistance and other low income residents commuting to or from work or work related activities. M.O.M. operates a shuttle service from Dover to Mt. Olive. Service is limited. For more information:

 973-829-8501 Morris County Organization for Hispanic Affairs Transportation is available for individuals in need. For more information:

 973-366-4770

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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13. Advocacy for Aging Loved Ones Self-Advocacy Self-advocacy is when an individual knows his or her rights and responsibilities, stands up for them, and makes choices about his or her life. As a caregiver of a loved one with issues of aging, you may be, in many instances, your loved one’s best advocate. However, it is also important to encourage your loved one to learn how to advocate on his or her behalf whenever possible. Selfadvocacy is promoted when, as a caregiver, you ensure your loved one is made aware of and informed about available services, and is involved in any planning processes.

Keys to Successful Advocacy on Behalf of Your Loved One Communicating effectively with professionals and learning how to navigate the system are important skills for the caregiver to learn and develop. These can be acquired through help from other caregivers or caregiver coalitions or other advocacy groups.

Be patient Most government and private agencies are not able to offer enough services to help everyone needing assistance, so people usually have to apply for services. This is sometimes referred to as an eligibility-based system. Depending on the organization, services or other assistance could be distributed on a first-come, first-served basis, or to those who need the service the most or to those who meet the financial eligibility requirements. It is up to you to know how the organization you are trying to work with makes these decisions and plan accordingly. Sometimes, there may even be long waiting lists for services. You may not know how long it takes to get to the top of the waiting list and get what you need, but one certainty is that if you do not apply and get on the list, you will not get the needed services.

Stay on people’s good side Find the line between advocacy and aggression. A successful advocate lets the system work for them. You want to stay on top of things, but don’t turn into a pest and make it harder for the professionals to do their jobs. Smile when you are talking to people…even if you are on the phone, your smile will come through in your tone of voice. Professionals are people too, and words like “please” and “thank you” will go a long way toward developing a strong working relationship.

You just might be the expert in the room Be prepared to assist professionals who may have limited experience with your loved one’s exact needs.

Your family doctor may be wonderful, but he or she may have little or no experience writing prescriptions for wheelchairs or accessibility devices. Share your expertise by discussing your loved one’s needs, giving as much detail as possible about what you are looking for. You may want to speak with agencies about equipment and service evaluations before approaching a doctor for authorization.

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Keep accurate notes Record keeping may seem like a hassle at first, but saves a great deal of time down the road. Whenever you have a conversation with any professional, it’s a good idea to write it down. Some caregivers keep a notebook just for this purpose. Include all contact names, phone numbers, dates of calls, and a quick summary of the discussion.

Know what you need; do your research When advocating for equipment or services, make sure to collect all the details and product information ahead of time. If insurance is being used for payment, ask both the insurance company and the equipment provider if there are pre-set guidelines or other information that will be needed. This will save a lot of time later on in the process.

Understand your insurance benefits. Do not be afraid to ask questions when you are unsure of something about your insurance. Review the terms of each program and policy. Know when referrals or pre-certifications are necessary. Pay careful attention to co-pays, service limits, and equipment ownership and replacement responsibilities. These issues are especially important for those whose functional abilities may change with time. Remember, you can always appeal an insurance company’s decision in the event of a denial, no matter what type of plan you are on.

Systems Advocacy Systems Advocacy is a process by which organized groups or individuals come together to advocate for positive change to programs, services, and legislation. Advocacy for changes in policy or service delivery may be most effective when there is a united voice that speaks on behalf of the issue. There are numerous organizations that advocate regarding specific issues, policies, disabilities and diseases on local, state and national levels.

AARP (formerly known as American Association of Retired Persons) AARP’s mission is to enhance the quality of life for all as we age. AARP works on issues that are important to American’s age 50 and over, including health and financial security.  AARP - Washington, D.C.

1-888-687-2277 www.aarp.org  AARP - New Jersey

1-866-542-8165 www.aarp.org/states/nj/ Caregivers Coalition of Morris County A United Way of Morris County Initiative The Coalition’s work on behalf of caregivers includes advocacy at the local, state, and national level. It is an advocate voice on your behalf. Your ideas and experiences could help direct the Coalition’s advocacy efforts. Please contact the Coalition if you are interested in joining its advocacy efforts.



Caregivers Coalition of Morris County 973-993-1160, x139 www.LiveUnitedMorris.org

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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14. Life Transitions for Caregivers of Aging Loved Ones Your Changing Role Throughout your caregiving journey, you may notice that your loved one requires different levels of care. Having to assume responsibilities that your loved one was used to doing independently can generate a range of emotions for you both, from frustration to sadness, even anger and grief. Accepting the deterioration and identifying the issues that are associated with the illness, disease or disability will help you cope with the role transition that you are experiencing, as well as the changing nature of your relationship with your family member or friend. During this time, flexibility is the key. You will need to develop stress and time management skills that are necessary to cope with changes and increased demands that will occur over time. When you start to take on more and more daily tasks related to caregiving, it will become increasingly important to take advantage of resources in the community and whatever services you and/or your loved one are eligible for. If and when you are called upon to take on a new level of care, give yourself time to adjust. Do not expect your life to return to normal right away. The social structure you knew, the friends you had, and activities you did may have to change as you take on your caregiving role. Give yourself time to develop and establish new daily routines. And, remember that each caregiving situation is unique – no two caregivers will experience the same circumstances or transitions. There is no single way of caring. With the right information, resources, and support you will be able to care in the appropriate and positive way that is best for your loved one…and for yourself.

The Reality of Loss As the person you care for becomes increasingly dependent, losing more and more of their abilities, this loss is a death of sorts, and a natural reaction to loss is to grieve – for both the caregiver and the care recipient. For caregivers, whose losses are sustained over a long period of time, grieving itself can become a long-term process. Illnesses that keep changing can bring grieving and re-grieving. You may be caregiving through the various stages of an illness with your loved one, and you may experience a variety of emotions at different times: sadness, anger, depression, even despair. Experts tell us that there are many stages of grief and they can recur, or even appear simultaneously. However the grieving process occurs, it is normal, and unavoidable. There is a natural sense of loss when the need for our caregiving is over. We must often face the double sorrow of losing a loved one and losing our purpose or role in his or her life. © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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After losing our loved one, it is a natural experience that the aftermath can be a difficult time that leaves any caregiver feeling lost, lonely, and useless. We may not feel grounded without that important function of taking care of another in our lives. Caregiving responsibilities gave each day a direction, a purpose. We may have forgotten how to take care of ourselves or even what our interests are. If our self-confidence was based on the caregiving job we were doing, we may experience a shift in self-esteem. It may be hard to pick ourselves up and start over again. The future may look bleak or even empty. You may have been a caregiver for what felt like a long time. While it may have been consuming and stressful, caregiving had a sense of reward and, in any case, it was what you did. That role is now lost. Remember, the loss of a meaningful role - such as caregiver - also is a cause of grief. Also note that we never really go back to the old "normal." Each of us must find a new sense of routine in this new phase of life – a new “normal.” Begin by asking yourself what activities and interests sustained you before you took on a caregiving role. Have you developed any new interests? What of friends and family -- what possibilities exist there? Were you active in any faith-based communities or organizations? Would you like to return to activities with those groups? Most importantly -- what do you wish to do and what do you want your life to be? There are no easy answers, so give yourself time to rediscover, and even reinvent yourself. This takes time and courage. Use resources -- caregiver support groups and counselors may be helpful as you explore new opportunities. This stage of transition, while difficult, promises new things for you. Your local hospital, place of worship, hospice, or behavioral health center may have a grief support program that can help you meet the challenges of loss and life transitions. Importantly, always remember that your caregiving has been a gift – one of the greatest gifts you could have ever given to the one you cared for; a gift to be proud of and to cherish.

The Caregivers Coalition of Morris County offers a free 8-week Bereavement Support Group for bereaved caregivers, addressing the loss of the caregiver role in addition to the grief associated with the loss of a loved one. For information, call the Coalition Coordinator at 973-993-1160, x139.

Based on material from CHATS - Community Home Assistance to Seniors, Ontario, and Aetna Intilihealth

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Section 2 Caregiving for a Loved One with a Disability

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Caregiving for a Loved One with a Disability Chapter 1

Introduction………………………………………….. 56

Chapter 2

Becoming a Caregiver for a Loved One with with a Disability ……………………………………. 57

Chapter 3

Where to Begin: Finding the Support You Need… 60

Chapter 4

Education for Individuals with a Disability; Education for Caregivers ………………………….. 62

Chapter 5

Parent/Caregiver Support………..……………..

Chapter 6

Care/Case Management…………….…………….. 76

Chapter 7

Benefit Programs & Financial Matters …………….. 79

Chapter 8

Legal Matters………………………………………... 95

Chapter 9

Day & Home Care Programs……….…………..

70

100

Chapter 10 Employment & Volunteering………………………

103

Chapter 11 Housing for Loved Ones with Disabilities.………

106

Chapter 12 Transportation Information…………..……………. 110 Chapter 13 Advocacy…………………………………………….. 113 Chapter 14 Life Transitions for Caregivers…………….……… 117 Appendix A National Websites on Caregiving………………… 173 Appendix B Disease/Disability-Specific Websites ……………. 175 Appendix C Glossary of Legal Terms…………………………… 178

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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1. Introduction to Pathways for Caregivers of Loved Ones With a Disability We are glad that Pathways for Caregivers has found its way to you and hope you find it a helpful tool. Pathways is intended to be a source of information, advice, and ideas about how to get the support you need on your caregiving journey. Whether you are planning ahead for a loved one with a disability, or find yourself in the middle of a crisis with decisions that need to be made quickly, information and resources can often be confusing and difficult to access. While you will find some organizations and agencies referenced, Pathways is not meant to be a complete list of all the County agencies and services that are available. 2-1-1 First Call for Help and the Morris County Division on Aging, Disabilities, and Veterans/NJ EASE are your best bets for that. You will find them referenced throughout this guide. Rather, Pathways IS designed as a “roadmap” to help put you on the right track for your caregiving situation, and to support you along the way. Pathways for Caregivers was created by members of the Caregivers Coalition of Morris County. This means it was created BY caregivers FOR caregivers - created by caregivers, for you. As you read this guide, please keep in mind that it is intended to help caregivers who may be facing a wide range of situations. While planning ahead is important, we recommend that you try to focus on the caregiving stage that you are currently in, and not look too far into the future, as sometimes trying to look too far down the road can be a bit overwhelming. The most important thing to know is that, as you take on caregiving responsibilities, you need not caregive in isolation. Reach out. Ask for help. There are resources, organizations, and fellow caregivers who can provide you with the support you need. If your loved one is over age 60, please see The Caregiving for an Aging Loved One section of this guide for more information and resources.

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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2. Becoming a Caregiver for a Loved One With a Disability If you support your loved one with a disability in any way on a regular basis, from driving to appointments or shopping, to managing his or her finances, to discussing medical issues with his or her doctor, to providing emotional support, you are considered a caregiver. The following is a list of activities that, if done on behalf of another, are traditionally considered “caregiving”: • Occasional or daily help at home (chores, meals, transportation, etc.) • Financial and/or business assistance (balancing checkbooks, paying bills, etc.) • Emotional support • Daily supervision and/or personal care • Arrangements for doctors’ appointments (making calls, transportation, explanations or translations, etc.) • Medication management Whether your loved one with a disability lives with you, in their own home, in a facility, or even a long distance away, if you do any of these things on a regular basis…YOU are a caregiver...and we hope this guide will be of help to you. Disability can happen to anyone at anytime: a developmental disability in a newborn, a paralyzing spinal cord injury to a teenager, an acquired brain injury to a once independent adult. If you become a caregiver for someone with a disability, one thing is for certain, you are embarking on a new journey that will bring a wide range of experiences and emotions. There are many paths to choose, some more promising than others. A successful journey is possible, however. The key is in how well you prepare for the journey and how well you utilize the resources available to you. Perseverance and determination will be vital. Whether a disability appears at birth or occurs later in someone’s life, it will generally have an impact across that person’s lifespan. Certain issues will result from the disability that will be present for the person’s entire life. Other issues related to the disability will come and go with different life stages; for example, school-related issues will disappear after graduation, to be replaced by issues of employment, or housing. Regardless of the onset of disability, it is naturally a “life-altering” event for the individual, and for those caring for him or her. Often, providing care becomes THE major focus of the family/support system. Providing care for someone with a disability requires patience and persistence. The caregiver will be faced with a wide variety of issues over the years, and will have to deal with a range of professionals in matters of health, education, recreation, employment, housing, etc. The spectrum of issues can seem daunting, and it is natural for any caregiver to feel overwhelmed. If you provide care for someone with a disability, it helps to remember that you are the constant, you provide continuity. Others may be in your loved one’s life for just a while, but you will be there throughout. You are the one who knows your loved one the best. © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Stages of Caregiving In caring for your loved one you may, over time, experience different stages of caregiving. Coping with these changing stages will require you to manage stress, perhaps develop new skills, all while maintaining a level of flexibility as you adapt to your loved one’s changing needs. But, really, how many caregivers are given the opportunity to fully prepare? Realistically, most caregivers climb a steep learning curve, as they become a medical connoisseur, system navigator extraordinaire, assertive advocate, financial guru, and legal expert all in one. For many, this must be done while balancing a full or part-time job, children, grandchildren, spouse, and other relationships and responsibilities, while trying to maintain their own physical health, mental health, social life, and overall well-being. Life is a journey – each of us can only take one step at a time. Caregiving for a loved one with a disability is no different. Caregiving for a parent, spouse, domestic partner, relative, or close friend presents a variety of difficult challenges. These challenges can arrive in an instant, as with a sudden crisis, or can develop over time, through a series of small, but sometimes disconcerting, mishaps and warning signs. You may be the only person to step in, or you may be part of a larger network of family and friends willing to share caregiving duties. Whatever the caregiving situation, you may find yourself unsure of which steps to take. And, of course, throughout any caregiving journey, those steps will change.

You Are Not Alone We don’t need to tell you that caregiving can be exhausting, even frustrating at times. For any caregiver, the stress of providing care can generate a range of emotions on any given day frustration, sadness, worry, even anger. So, do not try to do the entire job all alone! A strong network of friends, family, and service providers can help you, and keep emotions and exhaustion from becoming overwhelming. Ask for help, whenever you need it. Again, remember, it is important that you do not take on all your caregiving responsibilities in isolation. Through organizations noted in this support guide, you can find the resources and people you need to take care of yourself – taking care of yourself means that you will be better able to take care of your family member or friend. No matter what each stage of caregiving brings, it will always help to reach out to find the information and support you need to provide the best care possible, for your loved and for YOU.

Your Changing Role Throughout your caregiving journey, you may notice that your loved one requires different levels of care. Having to assume responsibilities that your loved one was used to doing independently can generate a range of emotions for you both. Identifying the issues that are associated with the illness or disability will help you cope with the role transition that you are © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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experiencing, as well as the changing nature of your relationship with your family member or friend. In most caregiving situations, flexibility is the key. You will need to develop stress and time management skills that are necessary to cope with changes and increased demands that will occur over time. If you must take on more and more daily tasks related to caregiving, it will become increasingly important to take advantage of resources in the community and whatever services you and/or your loved one are eligible for. If and when you are called upon to take on a new level of care, give yourself time to adjust. Do not expect your life to return to normal right away. The social structure you knew, the friends you had, and activities you did may have to change as you take on your caregiving role. Give yourself time to develop and establish new daily routines. And, remember that each caregiving situation is unique – no two caregivers will experience the same circumstances or transitions. There is no single way of caring. With the right information, resources, and support you will be able to care for your loved one and yourself in the best way possible.

Based on material from CHATS - Community Home Assistance to Seniors, Ontario, and Aetna Intilihealth © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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3. Where to Begin: Finding the Support You Need Additional websites of national organizations with information on caregiving can be found in Appendix A.

Your first call is an important one. Whether you are just beginning to provide care for a loved one with a disability, or have been a caregiver for some time but without any real support, here are some helpful first calls to consider:

If you think an infant or toddler (0-3 years of age) is not growing or developing as he or she should… seek help early. The first three years of life are important, formative years in maximizing a child's future potential. If you suspect that an infant or toddler may be experiencing developmental delays, Family Link is the single point of entry into the early intervention system in New Jersey. A service coordinator will speak with you and your family about your concerns and offer referral information if needed. If a developmental evaluation is needed, the service coordinator will work with you to schedule a multidisciplinary evaluation of the child's developmental levels and needs. Evaluation and assessment services are provided at public expense with no cost to parents.

 Family Link – Early Intervention 1-888-653-4463 www.familylinknj.org

If the disability occurs in someone younger than 21 years old: NJ Division of Developmental Disabilities (DDD) In order to receive services from DDD, you will need to register with them. This is a paperwork procedure. Although the process may seem cumbersome, it is important to register as soon as possible for a few reasons: • • •

The sooner you register, the sooner you can receive services. You will be helping DDD plan for the future, because they will have a better idea of who will be eligible for services The documentation required will be easier to find now, as opposed to waiting and possibly misplacing it.

 NJ Division of Developmental Disabilities 973-927-2600 (Northern Regional Office) www.state.nj.us/humanservices/ddd/index.html

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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If the disability occurs in someone 21 years or older: NJ Department of Human Services, Division of Disability Services (DDS) The Division of Disability Services is the single point of entry for all people seeking disabilityrelated information in New Jersey.

 NJ Division of Disability Services 1-888-285-3036 www.state.nj.us/humanservices/dds

Other Resources NJ Department of Human Services, Division of Disability Services (DDS) The Division of Disability Services has produced an excellent resource for any individual with a disability, or their caregiver, called the New Jersey Resources Guide. For more information, and for access to the guide:

 NJ Division of Disability Services 1-888-285-3036 www.state.nj.us/humanservices/dds 2-1-1 First Call for Help 2-1-1 First Call for Help offers both confidential telephone support to people in crisis and personalized information and referrals to those needing assistance. 2-1-1 now operates statewide, connecting people with the resources they need to solve common life problems. It is staffed 24 hours/7days per week and can be accessed by dialing 2-1-1.

 Dial 2-1-1, or 1-800-435-7555 www.NJ211.org Family Support Center of New Jersey The Family Support Center has an excellent resource for parents/caregivers of children with disabilities, known as The Options Manual. For more information:

 973-244-0850 www.fscnj.org Morris County Division on Aging, Disabilities and Veterans The County provides information, referrals, and direct client assistance for older adults, adults with disabilities, veterans, and caregivers. The Morris County NJ EASE office is a great place to start when seeking information on a variety of services. NJ EASE, which stands for Easy Access, Single Entry, is a statewide program that provides easy, local access to a coordinated system of responsive services.

 NJ EASE 1-800-564-4656 www.morrishumanservices.org/dvs/ © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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4. Education for Individuals with a Disability; Education for Caregivers Education Services - Ages 0 to 21 Years 0-3 years old (Early Intervention) The Early Intervention System (EIS), under the NJ Division of Health and Senior Services, implements New Jersey's statewide system of services for infants and toddlers, birth to age three, with developmental delays or disabilities, and their families. The NJ Department of Health and Senior Services is appointed by the Governor as the state lead agency for the EIS. The mission of the EIS is to enhance the capacity of families to meet the developmental and healthrelated needs of children birth to age three who have delays or disabilities by providing quality services and support to families and their children in a natural setting.

New Jersey Early Intervention System Point of Entry Morris County families or professionals who are interested in referring a child with special needs to the early intervention system in New Jersey should refer directly to Family Link.

 Family Link – Early Intervention 1-888-653-4463 (press 1 for Morris County) www.familylinknj.org Regional Early Intervention Collaboratives (REICs) In New Jersey, four nonprofit organizations, called Regional Early Intervention Collaboratives, have been established to plan and coordinate the state's early intervention system at the regional/community level. The Collaborative listed below (for Morris County families) provides technical assistance to families, early intervention programs and professionals, and ensures the protection of family rights.

 Family Link REIC: A Regional Early Intervention Collaborative 908-964-5303 www.njeis.org/familylink/ For details on eligibility, the evaluation process, services available and potential cost shares to families:

 www.state.nj.us/health/fhs/documents/intervention.pdf Project Child Find A source of information and referral to Early Intervention and other services for children:

 1-800-322-8174 www.state.nj.us/education/specialed/childfind/

© 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Information if Your Loved One with a Disability Attends School Morris County has 40 school districts and 150 schools. There are also 87 private schools in the County. There are child study teams in each district headed by a Director of Special Services. As a parent or caregiver seeking help for a struggling student, use the following steps as a guideline: First, submit a letter to the Child Study Team (CST) office in your child’s school requesting an evaluation. Be sure to attach any pertinent medical records or diagnoses. The CST will set up a meeting with you to discuss your child’s situation and then determine the next steps, either a CST evaluation to determine eligibility for an Individualized Education Program (IEP) or a referral to the Intervention & Referral Services Committee (I&RS Team) The Intervention & Referral Services Committee (I&RS Team) is typically composed of, but not limited to, the following people: guidance counselor, classroom teacher, principal, parent, student (if appropriate), and any other person deemed appropriate (school psychologist, speech therapist, social worker, etc). In some instances, simple accommodations can be made and services can be provided without the involvement of the Child Study Team. In other words, the I&RS Teams can coordinate the services necessary to prevent the need for special education classification. However, if the accommodations, modifications, and services are not effective, the Child Study Team will step in.

Determination of eligibility for special education and related services If your child has a disability that adversely affects educational performance, your child is eligible for special education services under the Individuals with Disabilities Education Act (IDEA). This Act guarantees children with disabilities, ages 3 to 21, the right to a free, appropriate, public education (FAPE) delivered in the least-restrictive environment (LRE). Each local school district has a Child Study Team, which, with consent of a child’s parents, evaluates children to determine his/her eligibility for special education services. The team includes a case manager, special education teacher, regular education teacher, representative of the district (usually the case manager), a speech therapist if the child is between ages 3 and 5, and the student where appropriate. Upon completion of the evaluation and determination of eligibility, and prior to placement in special education, an Individualized Education Program (IEP) with present levels of educational and functional performance, specific and measurable goals and objectives, accommodations, modifications, and related services is written by the IEP team which includes the parent. It is the responsibility of the school district to provide the parents with a copy of the Parental Rights in Special Education (PRISE) manual prior to the IEP meeting.

 PRISE (Parental Rights in Special Education) www.nj.gov/education/specialed/form/prise/prise.pdf It is not uncommon to encounter differences of opinions among team members. In that instance, there are numerous resources to assist in mediating the disagreement. The resources below will provide guidance on how to request modifications to the IEP, mediation, due process, “stay put” or other interventions. Resources for legal issues regarding special education and special needs:

 Hinkle, Fingles & Prior, Attorneys at Law www.hinkle1.com (Click on “In Print”)

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 Wrightslaw www.wrightslaw.com (Click on “Topics from A-Z”)  Education Law Center www.edlawcenter.org/elcpublic/studentrights/specialeducation.htm (Click on “The Right to Special Education in New Jersey: A Guide for Advocates) From 3 to 5 years old, a child is classified as “eligible for a pre-school handicapped program.” At age 5, the child will be reclassified, based on the child’s condition and the impact the disability has on the child’s educational performance. For a complete listing of the various classifications of eligibility refer to Chapter 14 of the New Jersey Administrative Code for Special Education, subchapter 3.5:



New Jersey Administrative Code for Special Education www.state.nj.us/njded/code/current/title6a/chap14.pdf

Every year, and sometimes more frequently, you will meet with the Child Study Team to review your child’s progress, make necessary revisions to the IEP, and plan for the future. Every third year, your child may be reevaluated prior to the IEP meeting to determine if your child is still eligible for special education services and if so, to ensure that the educational plan is appropriate. Families have the option of refusing reevaluations; however, these assessments can provide valuable information in the planning process at the IEP meeting. It is important that you, as the parent and caregiver, come to these meetings well prepared, as you are a member of the planning team, and are considered to be the expert on your child. Bring any medical reports, relevant school work, and any other documents that you feel may be important. Prior to each meeting, write down your concerns and ideas. An excellent document that you can use to provide team members with a snapshot of your student is called POSITIVE STUDENT PROFILES & GOALS-AT-A-GLANCE available from SPAN (Statewide Parent Advocacy Network.) SPAN is an excellent source of information to families regarding the IEP process. SPAN representatives can also provide technical assistance and guidance on identifying advocacy support.

 SPAN 1-800-654-SPAN; 973-642-8100 www.spannj.org Section 504 Children who are eligible for special education services under IDEA are also protected under Section 504 (but the converse is not true). If your child has a disability that does not adversely affect educational performance, then your child will not be eligible for special education services under IDEA but will usually be entitled to protections under Section 504. Section 504 of the Rehabilitation Act is a civil rights law which prohibits recipients of federal funds from discriminating on the basis of disability. School districts are required by Section 504 guidelines to provide a free and appropriate public education to eligible students in their jurisdiction. There are procedural safeguards in place for students protected by a 504 plan, however they are not as comprehensive as those in place for students covered under IDEA.

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Transportation for a Child with Disability To and From School There are several different options for transporting your child to school. If your child attends school in your local district, he or she might be assigned to ride on a regular school bus, or on a bus used only for students who are classified. If your child attends an out-of-district school, bus transportation might be provided by your local school district, your county, or a private company. The “bus” might also be a van or a car. Do not minimize the importance of transportation to and from school in your child’s day. It is important to make sure that the transportation situation is one that is appropriate for your child, and one in which he or she is comfortable. If your child needs an aide, make sure that one is provided. Remember, you are the one who knows your child’s needs best, and informing a driver and/or aide about your child’s needs will make for a smoother ride. Tell them about the disability and about any potential medical issues, such as seizures. Let them know if there are things that your child likes or dislikes such as music (watch the volume), sitting in a certain seat such as by a window or near the driver, being near a friend, avoiding someone who teases them, etc. Also, advise them what to do if your child is having a difficult time. Consider having your child bring things on the bus that they enjoy, such as books, music with headphones, activity books, or video games. If you are having difficulties with transportation, speak with the driver and/or aide. If that does not help, contact your child’s case manager in your school district. You may also be able to get some assistance and helpful suggestions from your child’s school.

Transition from School to Adult Life Transition planning begins at age 14 and is addressed annually until the child graduates. A “Statement of Transition Service Needs” must be included as part of the child’s IEP where applicable. This is an identification of and planning for the courses and educational experiences in the school or community that the child will be taking each year from age 14 until graduation. If it is appropriate, this Statement will also include the need for technical consultation from the Division of Vocational Rehabilitation Services (a Division of Vocational Rehabilitation Services counselor will provide information and assistance, either in person or over the phone, regarding transition planning issues related to employment and vocational training). Depending upon the severity of the disability, the Division of Developmental Disabilities (DDD) may be involved. For further information, see Chapter 10: Employment and Volunteerism.

College A young adult with a disability may be interested in and able to attend an institute of higher education. If your child had an Individualized Education Program (IEP) during his/her last year of high school, he/she is eligible under Section 504 of the Rehabilitation Act for assistance in setting up a plan of accommodations. Many schools have special support systems in place to assist individuals with disabilities. Some supports include: taping lectures, providing a notetaker, untimed tests, sitting in on multiple sessions of the same class, summer transition sessions, taped textbooks, tutoring, and counseling. © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Students considering higher education who were “classified” and received special education services in high school should contact each institution’s department of disability services before enrolling to ensure the school can provide the accommodations needed for success. IMPORTANT - It is the responsibility of the student to inform the institution as well as the professors of any accommodations that he or she may need. There are other types of schools your child may want to consider attending after high school graduation, and it is important to know the differences between them. Examples are vocational programs and private residential schools that address independent living. It pays to do your research while your child is still in high school so that continuing education is in place when they are ready to move on.

NJ Commission on Higher Education: Special Needs Regional Centers This is a system of seven regional centers that provide support services for college students with special needs, such as learning disabilities, visual impairments and hearing impairments.

 NJ Commission on Higher Education Office of Academic Affairs 609-292-2955 www.state.nj.us/highereducation Adaptive Aids An Adaptive Technology Center has been established at The College of New Jersey to provide access to appropriate adaptive aids.

 Adaptive Technology Center http://adaptivetech.tcnj.edu

Education Services - 21 Years of Age and older Note: It is important to start planning and preparing for your child’s future well before they turn 21. There is a dramatic change when a young adult with a disability leaves school (usually the June after their 21st birthday.) THE “ENTITLEMENT” PERIOD ENDS AND THE SCHOOL DISTRICT NO LONGER HAS THE RESPONSIBILITY TO PROVIDE SERVICES. At that point, he/she may be “eligible” to receive services from DDD. These can include day programming, residential services, and family support services (the latter may already be in place.) There is valuable information available on the DDD website in regard to services available:

 Self Directed Day Services www.state.nj.us/humanservices/ddd/programs/selfdirected/  Pathways to Adult Life www.state.nj.us/humanservices/ddd/programs/pathways/  Life Line for the Journey www.state.nj.us/humanservices/ddd/programs/lifeline/ There is a "Community Services Waiting List" for some of these services. Speak with the DDD Case Manager to access this. Some guidelines: © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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• •

Ask for the student to be put on the day program waiting list when he/she turns 16. Begin exploring housing options, as there are waiting lists for residential services. See Chapter 11: Housing, for more information.

Real Life Choices/Self-Directed Day Services This is a person-centered DDD program for life planning. For more information, see DDD references in Chapter 7: Benefits and Financial Matters. Speak with your DDD Case Manager for further details.

 NJ Division of Developmental Disabilities 973-927-2600 (Northern Regional Office) www.state.nj.us/humanservices/ddd/index.html Division of Vocational Rehabilitation (DVR) If the person with a disability does not receive day program placement through DDD, DVR is a source for assistance with employment. They can provide training, placement and job coaching.

 NJ Division of Vocational Rehabilitation 973-631-6304 http://lwd.dol.state.nj.us/labor/dvrs/DVRindex.html Centers for Independent Living (CIL's) These are private, not-for-profit organizations that work with people with all disabilities to advance their independence. Each CIL promotes the Independent Living movement which seeks to change community attitudes and beliefs which perpetuate dependence. Independent Living is a philosophy which states that people with disabilities should have the same civil rights, choices, and control as do people without disabilities. DAWN is the Center for Independent Living serving Morris, Sussex and Warren counties. For more information:

 DAWN Center for Independent Living 973-625-1940; 1-888-383-DAWN www.dawncil.org

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Education for the Parent/Caregiver Parent education is a valuable component in caring for any child with a disability. Although much of this training will be “on the job,” there is a lot to be said for attending formal parent education trainings. Participation in parent education is even required at some private special-needs schools. At parent education trainings you may receive assistance with your particular situation, as well as learning about the “nuts and bolts” of parenting a child with special needs and/or with a specific disability. In addition, parent education classes are a good place to network with parents in a similar situation. Some sources of parent education to consider are your child’s school, your local school district, and the following organizations:

 SPAN: Statewide Parent Advocacy Network This organization provides training, assistance, and support to parents of children with disabilities (in Spanish, as well) 1-800-654-SPAN; 973-642-8100

www.spannj.org  Autism New Jersey (Formerly known as Center for Outreach and Services for the Autism Community/COSAC)

1-800-4-AUTISM or 609-883-8100 www.autismnj.org  The ARC/Morris 973-326-9750 www.arcmorris.org  Family Support Organization of Morris and Sussex County (FSO) The Family Support Organization of Morris and Sussex Counties is a family-run organization devoted to the needs of families whose children have emotional and behavioral challenges. Families receive peer support, information and referral services, education and advocacy within a compassionate and culturally sensitive environment. Assistance is also offered in helping caretakers navigate the complex children’s mental health system in New Jersey.

973-770-2700 www.fso-ms.org  United Cerebral Palsy of Northern, Central and Southern NJ, Inc. (UCP) 908-879-2243 www.ucpncsnj.org

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Visiting Nurse Association of Northern NJ (VNANNJ) This organization provides free one-on-one education in the home environment in order to improve caregiver ability and effectiveness. The care recipient must be over age 18 and functionally impaired with a chronic disease or disability that requires the assistance of a primary caregiver to adequately perform activities of daily living. There are no income or asset eligibility requirements for this program.

1-800-WE-VISIT (1-800-938-4748) www.hometeam.org  Caregivers Coalition of Morris County, a United Way of Morris County Initiative The Coalition’s Lunch & Learn Education Series offers programs on various aspects of caregiving, presented by professionals in the field. These highly rated workshops may be scheduled by any local group, including area corporations, faith-based organizations, civic groups, etc. Contact the Coalition Coordinator for an updated list of topics, or to schedule a workshop.

973-993-1160, ext. 139 www.LiveUnitedMorris.org

Educating yourself about the disability that is affecting your loved one is important. There are many disease/disability specific websites available. Make sure the information you access is from a recognized and trustworthy organization. Some recommended sites can be found in Appendix B.

Medicare will pay for certain types of family caregiver education when it is provided as part of a patient’s medically-necessary face-to-face visit. A physician may be able to bill for family caregiver education as part of the counseling and coordination of care services provided during a patient visit, as long as the patient is on Medicare, the caregiver education directly involves the patient and is medically necessary. This education can take place in a doctor’s office or other outpatient facility, a patient’s home or private residence, or an assisted living facility or other domicile. See “Tip Sheet for Providers: Caregiving Education” at www.cms.hhs.gov/Partnerships/downloads/ProviderBillingforCaregiverEducation.pdf

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5. Parent/Caregiver Support Including recreation, camp, and travel information. It is important for caregivers to recognize that they are not alone, to learn that caregiving is more than a one person job, and to see that taking care of themselves is vital to their loved one’s wellbeing. - The National Family Caregivers Association

Taking care of yourself. Scheduling (and keeping!) your own doctors’ appointments. Asking for help. Taking a break. These are vital steps you can take as a caregiver to keep yourself healthy. Studies show that caregivers are at a greater risk for health problems. As a caregiver, your health - both physical and emotional - is as important as the health of the loved one for whom you provide care.

STOP! STOP! Self-Care Sometimes, as caregivers, we are so busy giving care that we forget or neglect to take care of ourselves. As caregivers, it is important to acknowledge that stress is a normal, sometimes difficult but definitely manageable, part of our caregiving. Stress can manifest itself in both a physical and emotional way; it is vital to find an outlet to relieve it! You may even need to give yourself permission to take care of yourself. That is fine, and good, and necessary! Self-care/stress management can be achieved in many ways. General attention to daily activities like healthy eating, exercising, sleeping, and talking with friends, is vital. Even for the busiest of caregivers, mini-breaks can be lifesavers. Go to a quiet room or step outdoors and just breathe for ten minutes; clear your mind and focus only on your breath. Write in a journal. Say a positive affirmation. Light a candle. Listen to music. Call a good friend. You might consider attending a support group. Support groups are organized groups of individuals who share a common experience and provide each other with various types of help, i.e., information, resources, and emotional support. Support groups can be led by a professional facilitator or be self-help groups. Other ideas may be helpful. These require a range of time and/or cost. Sometimes referred to as complementary or alternative therapies, there are options for everyone: o o o

Aromatherapy uses liquid plant oils and other aromatic compounds to improve one’s mood and health. Art therapy is based on the belief that the creative process is both healing and life enhancing. It uses art materials and projects as therapeutic tools. Chiropractic is a health care discipline that believes that re-alignment of the spine will alleviate any nerve interference that directly affects how stress manifests itself in the body. This can be especially helpful If you are physically moving your loved one from place to place,

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o o o o o

which takes a toll on your body; a chiropractor can teach proper lifting techniques that best protect your back. Massage therapy encompasses several disciplines that utilize body techniques to promote healing and health. Music therapy is the systematic use of music to maintain and improve one’s emotional stability. Reiki is a system of subtle energy healing using the laying on of hands and distinct healing techniques, designed to relax, de-stress, and heal. T’ai Chi is a slow gentle body movement, while breathing deeply and meditating, that helps the flow of body energy. The gentle flowing motion reduces stress and improves health. Yoga is a physical and mental discipline. While it includes physical exercise, it is also a lifestyle practice, the goal of which is the union of the mind, body and spirit. There are many different styles of yoga. You may need to explore a number of styles before finding the one that is right for you.

These are examples of some types of therapies that can help you manage your stress, as well as reduce pain, anger, anxiety, and even depression. There are others. Choose one or more that is right for you. Whether relaxing muscles and reducing inflammations, or improving strength, balance and mobility, or getting a more restful sleep...these are all critical ingredients of self care that will help you protect your own emotional and physical health as you continue your caregiving journey.

Respite Support/Recreation Respite literally means a period of rest or relief. Respite care gives a caregiver temporary relief from the responsibilities of caring for a loved one with chronic illness, physical disabilities, or mental disabilities. Respite is important for any and all caregivers, and is a key component to maintaining caregiver health. And caregiver health is, ultimately, vital for the loved one requiring care. Caregivers should take respite breaks regularly, without guilt. Length of respite care can be anywhere from a few hours to several weeks. Services that provide respite may be used for a variety of reasons, ranging from emergencies to vacation, and with a range of frequency, from one day per week or month, to weekends, even to respite everyday. Respite can be inhome or at respite centers. All members of the family will benefit when respite becomes a regular event. If you are eligible for Family Support through the Division of Developmental Disabilities (DDD), you can have access to InHome Respite, Hotel Respite or Respite Group Homes. Also, if you have someone who can provide respite, you are able to use funds from a DDD Cash Stipend to pay for this respite. Contact your DDD Case Manager for more information.

In-home Respite In-home respite services consist of a worker who comes to the family home so that the caregiver can leave the house for a period of time. These services are usually provided by agencies that recruit, screen, and train workers. This type of respite is usually less disruptive to the individual needing care, provided there is a good match between the worker and the individual. Caregivers looking for this type of respite support would contact Home Health Care agencies.

Respite Centers Respite centers are facilities specifically designed for respite care. Adult day care programs and respite camps also fall into this category. This type of respite often offers more peace of mind to the caregiver, while providing a stimulating environment for the aging individual. However, centers usually restrict the length of stay and may exclude individuals based on severity of disability. Caregivers looking for this type of respite would contact Adult Day Care Centers, Nursing Home Facilities, and Rehab Centers. © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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One good local starting point for lists of in-home respite agencies and respite centers is:

 Morris County Division on Aging, Disabilities and Veterans NJ EASE 1-800-564-4656 www.morrishumanservices.org/dvs/ The Morris County Division on Aging, Disabilities and Veterans (1-800-564-4656) has a Caregiver Guide with additional local resources that can be accessed online: www.morrishumanservices.org/dvs/publications.asp Click on Caregiver Guide

New Jersey Statewide Respite Care & Morris County Respite Care Programs These programs provide respite care services for elderly and for functionally impaired persons age 18 and older, to relieve their unpaid caregivers of stress arising from the responsibility of providing daily care. In Morris County, the County and State programs run side by side and can be accessed through:

 Visiting Nurse Association of Northern NJ 1-800-938-4748 www.hometeam.org/index.asp Recreation There are recreational opportunities for individuals with varying types of disabilities provided by various organizations. Each program has eligibility criteria and, in some cases, income eligibility requirements. There may be a registration fee or fee per activity required to participate. In addition, each municipality is required to provide inclusive programs to the residents of their community regardless of ability to participate. Contact your local municipality, religious organizations, and your local “Y” for programs that might be of interest. You might also get some ideas from other caregivers, schools and adult programs, and from organizations that provide services to individuals with disabilities. Information on county-wide programs can be found at the Morris County Office of Disability Services.

 Morris County Office of Disability Services 973-285-6855 www.morrishumanservices.org/dvs/

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Camps Camp can be a wonderful experience for anyone with a disability, providing a welcome change from the daily routine, while giving the rest of the family a well-deserved break. Some typical day camps and sleep-away camps welcome those with special needs. Other camps specialize in hosting campers with a specific disease or disability. Schools, work programs, disability organizations, and other families are all good sources of information about camp options for your family member. When considering a camp it is a good idea to visit during a session or during an open house to ensure it has the necessary supports for your family member. Prepare your family member in advance about what to expect, letting them know how long they will be away, and what the experience will be like. Let them help with the planning and packing. You might consider sending along specifics about your loved one in writing, to make it easier for the staff to get to know him or her. Think about sending a disposable camera with instructions so the staff can take pictures of fun times for future memories. There are too many camps to list here, but here are some additional sources of information:

 The National Information Center for Children and Youth with Disabilities www.NICHCY.org/pubs/genresc/camps.htm  Directory of Camps/Summer Programs for Children/Youth with Disabilities in Metro New York Area. Available for a fee. 212-677-4650 Travel When you are planning a trip with an individual with a disability, it may be necessary to consider issues such as accessibility of rooms and transportation, bringing along service animals, etc. Most travel destinations can make accommodations. There are agencies and organizations that cater specifically to the needs of individuals with disabilities in travel, both with and without caregivers. Some helpful resources include:

 AAA Contact your local AAA office  United Cerebral Palsy Vacation and travel for families with children with special needs www.ucp.org/document.cfm/3910/1/111  Disability Travel and Recreation Resources www.makoa.org/travel.htm

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General Caregiver Support Morris County Caregiver Support Program The Caregiver Support Program is designed to help caregivers access the services needed for their loved ones and themselves. The Project goes beyond information and referral to help with problem solving, advocacy, and support to sustain caregivers in their role. This is a new resource offered by the Morris County Division on Aging, Disabilities and Veterans created in partnership with the Caregivers Coalition of Morris County and United Way of Morris County. Visit the Resource Center at the County’s offices located at 340 West Hanover Ave, Morris Township, or call for information:

 Morris County Division on Aging, Disabilities and Veterans NJ EASE 1-800-564-4656 www.morrishumanservices.org/dvs/ Caregivers Coalition of Morris County, a United Way of Morris County Initiative Open to the public, and free to join, the Caregivers Coalition, a United Way of Morris County initiative, was founded to respond to the increasing needs of caregivers in the community. The goals of the Coalition are to strengthen services and resources to caregivers; improve access to information about caregiving and available services, and to identify and respond to gaps in services to caregivers. The Coalition also advocates for policies and legislation to improve the quality of life for caregivers, and provides educational programs to human service and health care providers, family caregivers, corporations, businesses, and the community. All are welcome. The Coalition’s Caregiver Advisory Panel (CAP) is a group of caregivers who are connected via phone and email; they share ideas, discuss issues, and support one another while advising the Coalition. These caregivers manage a range of caregiving situations. All caregivers are invited to join the CAP.

 Caregivers Coalition Coordinator 973-993-1160, x139 www.LiveUnitedMorris.org

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Caregiver Counseling/Psychotherapy There are many counseling and support services available in the County through local hospitals, human service agencies, and private practitioners. In some instances, counselors may make home visits or will arrange to meet with and support those of you who are providing care to a family member and/or friend with issues of aging and/or disability.

Mental Health Association of Morris County The Mental Health Association maintains a database of private practitioners and other mental health related resources.

 973-334-3496 www.mhamorris.org Morris County Division on Aging, Disabilities and Veterans The Morris County Division on Aging, Disabilities and Veterans offers listings of caregiver counseling programs.

 NJ EASE 1-800-564-4656 www.morrishumanservices.org/dvs/

Other Supports for Caregivers Self-Help Groups Self-help groups can be of great help to those trying to cope with the demands of caregiving. There are many local, state, and national groups that can be found by contacting the NJ Self-Help Group Clearinghouse. If the Clearinghouse cannot direct you to an appropriate group that is already set up, they will be able to help you to join with others to start one. In addition, disability organizations and schools often offer support groups for families and caregivers.

 NJ Self-Help Group Clearinghouse 1-800-367-6274 www.njgroups.org/ Internet Support If you are unable to attend support groups in your community, these websites may offer support:

 CaringRoad.com www.caringroad.org  Johnson & Johnson, The Caregiver Initiative www.strengthforcaring.com  National Family Caregiving Association www.nfcacares.org  NJ Department of Health and Senior Services – Caregiver NJ www.state.nj.us/caregivernj/search/index.shtml © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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6. Case/Care Management for Loved Ones with a Disability Case management services are made available in certain instances, depending on your loved one’s disability and/or the agency involved. In most cases, a case manager would become your primary contact and would assist you in determining eligibility and identifying appropriate programs and services which would be most beneficial. For example, if your loved one was born with a disability or acquires the disability prior to age 22, he or she will have a case manager through the Division of Developmental Disabilities. During the school age years, (0-21), each student who is classified and covered by the Individuals with Disabilities Education Act (IDEA) has a case manager through his or her school district.

 NJ Division of Developmental Disabilities 973-927-2600 (Northern Regional Office) www.state.nj.us/humanservices/ddd/index.html If your loved one acquired a disability from the age of 22 onward, he or she may have a case manager, if they meet specific criteria. These criteria typically pertain to the level of care they require. In most cases, the Morris County Division on Aging, Disabilities and Veterans will be the initial contact point for you or your loved one to determine if they qualify for case management services.

 Morris County Division on Aging, Disabilities and Veterans NJ EASE 1-800-564-4656 www.morrishumanservices.org/dvs/ Public Case/Care Managers Public Case/Care Managers are funded through various Federal, State, and county tax dollars and are provided free of charge to the older adult or adult with disability. In Morris County, case management is available through the Morris County Office on Aging and other local agencies. For additional information:

 Morris County Division on Aging, Disabilities and Veterans NJ EASE 1-800-564-4656 www.morrishumanservices.org/dvs/

Other Care Issues Safety Issues for Someone with a Disability As the caregiver, you should notify your local police if you think that they should be aware of your loved one’s disability for any reason. For example, the person may be a wanderer or might have difficulty leaving the house in an emergency. Once on record with the police department, this information will be accessible to fire and emergency health workers as well.

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 Project Lifesaver Morris County participates in Project Lifesaver, a program that will provide and fit a person who wanders with a tracking device. For information:

Morris County Sheriff’s Office 973-285-6675 www.mcsheriff.org/main/cp-lifesaver/ Abuse There are different kinds of abuse to be considered when talking about vulnerable adults or children: mistreatment and neglect. Mistreatment refers to any harmful conduct that is willfully inflicted on a vulnerable person. This includes physical, sexual, emotional, or financial abuse and exploitation. Signs of maltreatment and abuse include, but are not limited to, frequent visits to the emergency room, unexplained bruises or wounds, and depression, fear, or anxiety on the part of the person receiving care. Neglect can either be inflicted by another or self-imposed. Behavior is considered neglect when the responsible individual (i.e. caregiver, guardian, etc.) confines, isolates, or fails to provide essential services to prevent or lessen physical harm or mental anguish. Behaviors are considered self-neglect when an individual makes unnecessary or unsafe decisions or is taking part in unsafe activities. Signs and symptoms of neglect include things like malnutrition or dehydration, unsafe or unsanitary living conditions, missing or broken eyeglasses, hearing aids or dentures, and withholding of education or medical care, among others.

There are two specific points of contact if an individual is at risk of abuse. NJ Division of Youth and Family Services (DYFS) For children, the contact is through the New Jersey Division of Youth and Family Services (DYFS.) Anyone who has reasonable cause to believe that a child is being abused or neglected has a legal responsibility to report it.

 Child Abuse Hotline 1-800-792-8610 1-800-835-5510 (TTY/TDD for the deaf) www.state.nj.us/dcf/divisions/dyfs/index.html Adult Protective Services Adult Protective Services (APS) investigates reports of suspected abuse, neglect, and exploitation of “vulnerable” adults age 18 or older living in the community. A person is considered vulnerable if they are unable to act on their own behalf. Reports may be made by anyone. When a report is received, APS investigates. If the report is confirmed and the person is willing to accept help, APS will identify, and put in place, services that can help the vulnerable person. If you suspect a vulnerable adult is being abused or neglected, call:



Morris County Division on Aging, Disabilities & Veterans 973-326-7282 www.morrishumanservices.org/dvs/ After Business Hours: Call 911, or Sheriff’s Community Center: 973-285-2900

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The Prevention of Domestic Violence Act This Act provides protection from abuse to older adults and people with disabilities. The Act authorizes the issuance of a restraining order using the criminal code to define abuse. A caregiver or any person who has reasonable cause to believe that an older adult or person with a disability is subject to abuse, neglect, or exploitation should report such information to the local police.

Identification Having an official photo I.D. is a good idea for everyone. A non-driver photo ID can be acquired at age 17; six points of identification are required, just as for a driver’s license. For information:

 NJ Motor Vehicle Commission 609-292-6500 or 1-888-486-3339 www.state.nj.us/mvc At any age, a photo ID can be acquired at the Morris County Clerk’s Office. This ID can include medical alert information. For information:

 Morris County Clerk 973-285-6120 www.morriscountyclerk.org Service Animals The Americans with Disabilities Act (ADA) defines a service animal as any guide dog, signal dog, or other animal individually trained to provide assistance to someone with a disability. If the animal meets this definition, it is considered a service animal under the ADA, regardless of whether it has been licensed or certified by a state or local government. Service animals perform some of the functions and tasks that the individual with a disability cannot perform for him or herself. "Seeing eye dogs" are used by individuals who are blind. Other service animals assist persons with other kinds of disabilities in day-to-day activities. An animal might alert someone with hearing impairments to sounds, or pick up and carry items for someone with mobility impairments. Under ADA, privately owned businesses that serve the public, such as restaurants, hotels, retail stores, taxicabs, theaters, concert halls, and sports facilities are required to allow people with disabilities to bring service animals into any area where customers are generally allowed.

Worship For information on worship for those with disabilities:

 New Jersey Coalition for Inclusive Ministries http://rwjms.umdnj.edu/boggscenter/projects/faithbased.htm

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7. Benefit Programs & Financial Matters for Loved Ones with a Disability Key Benefit Programs There are a wide range of programs directed toward people of all ages with disabilities. There are public programs on the National, State, and local levels. There are programs for which everyone over a specific age is eligible. There are programs for which a person must meet specific criteria, or live in a particular county. It is important to ensure that the loved one for whom you are caring apply for the programs for which he or she is eligible so that the assistance needed can be obtained. We will begin at the Federal level with the programs most important to the majority of people with disabilities.

Social Security Programs Social Security

As a caregiver for a loved one, you should review and write down key benefits and financial information. Keep it all in an easily accessible place. Let a trusted family member or friend know where this information can be found.

“Social Security” is the short name for the Title II Old Age, Survivors and Disability Insurance programs. It insures individuals and family members when the working family member retires, dies, or becomes disabled. Workers qualify for benefits by paying Social Security taxes. As you work and pay taxes, you earn “credits” that count toward eligibility for future Social Security benefits. The major categories of benefits paid for through your Social Security taxes are:

1. Social Security Retirement Benefits Social Security is a federal program providing retirement income for those who have paid into the Social Security system. Note that the “normal” retirement age is being gradually increased from age 65 to age 67. You can get Social Security retirement benefits as early as age 62, but if you retire before your full retirement age, your benefits will be permanently reduced, based on your age. For example, if you retire at age 62 your benefit would be about 25% lower than what it would be if you waited until you reach full retirement age. NOTE: Sometimes health problems force people to retire early. If you cannot work because of health problems, you should consider applying for Social Security disability benefits. The amount of the disability benefit is the same as a full, unreduced retirement benefit. If you are receiving Social Security disability benefits when you reach full retirement age, those benefits will be converted to retirement benefits. For caregivers, the important aspects of Social Security involve the application process, taxation, and appeals. Upon application, Social Security will check their records to determine the exact benefit rate. This rate is a function of age and amount of reportable earnings. Once receiving a benefit, the checks increase automatically with the cost of living. Benefit payments are made for the prior month on the second, third or fourth Wednesday, depending on your date of birth. If your loved one is not able to manage his or her own financial affairs, you or another trusted individual can be appointed as a “representative payee” to handle Social Security matters. The © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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benefits are then made payable to the representative payee who must use the funds for the personal care and well-being of the beneficiary. Records and receipts must be kept to show how the money was spent or saved. This must be reported to the Social Security Administration. NOTE: some people have to pay federal income taxes on their Social Security benefits. This only happens if the beneficiary has other substantial income such as wages, interest, dividends and other taxable income that must be reported on the tax return in addition to Social Security benefits.

2. Social Security Disability Insurance (SSDI) The loved one you care for may have developed issues along the way that qualify as a disability. The definition of disability under Social Security is different than other programs. Social Security pays only for total disability. No benefits are payable for partial disability or for short-term disability. Disability under Social Security is based on a person’s inability to work. An individual is considered disabled under Social Security rules if he or she cannot do work that he or she did before, and the individual cannot adjust to other work because of his or her medical condition(s). Benefits can be paid to people at any age who have enough Social Security credits and who have a severe physical or mental impairment that is expected to prevent them from doing “substantial” work for a year or more.

SSDI benefits for adults with a disability since childhood The SSDI program pays benefits to adults who have a disability that manifested itself before age 22. This SSDI benefit is paid on a parent’s Social Security earnings record. For an adult with a disability to become entitled to this “child” benefit, one of his or her parents: • •

Must be receiving Social Security retirement or disability benefits; or Must have died and have worked long enough under Social Security.

These benefits are also payable to an adult who received dependents benefits on a parent’s Social Security earnings record prior to age 18, if he or she is disabled at age 18. The disability decision is made using the disability rules for adults. SSDI disabled adult “child” benefits continue as long as the individual remains disabled. Your child does not need to have worked to get these benefits.

3. Social Security Family Benefits It is important for families to know that if their family member is eligible for retirement or disability benefits, other members of the family might receive benefits, too. If the spouse is at least 62 years of age, or under 62 but caring for a child under age 16, he or she may also be eligible for benefits. Unmarried children under age 18, or under age 19 but still in school, or 18 or older with a disability, may also be eligible.

4. Social Security Survivor Benefits Certain members of your family may be eligible for benefits if their eligible family member dies. The family members who may be eligible include: a widow(er) age 60 or over, 50 or older if disabled or any age if caring for a child under age 16, unmarried children under age 18, under 19 but still in school or 18 or older with a disability. Parents may also be eligible if the deceased was their primary means of support. A special one-time payment of $255 may be made to the spouse or minor children. If divorced, an ex-spouse could be eligible for a widow(er)’s benefit.

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Supplemental Security Income Benefits (SSI) Supplemental Security Income (“SSI”), often also referred to as “Social Security”, is a Federal income supplement program funded by general tax revenues and not Social Security taxes. It provides a minimum income to low income people who are 65 or older, blind, or disabled. Where Social Security is an insurance program requiring “paying into system,” SSI is a needs based program. The basic SSI benefit is a monthly cash payment. Living arrangements or monetary assistance from friends or family may reduce benefits. The monthly benefit rate varies depending on the state you live in. Most people who get SSI also qualify for Medicaid, food stamps, and other assistance. It is important that the caregiver or recipient monitor SSI payments; they should report any change in a situation, any overpayment, underpayment, etc. If an underpayment is discovered, you are entitled to retroactive benefits. While there is no time limit to reporting an underpayment, appeals of agency decisions must be filed within 60 days of the date of the decision.

SSI rules for children under the age of 18: The following criteria will be considered when determining if a child is eligible: • Your child’s income and resources • The income and resources of family members living in the child’s household These rules apply if your child lives at home. They also apply if he or she is away at school but returns home from time to time and is subject to your control.

Providing information about your child’s condition When you apply for benefits for your child, you will be asked for detailed information about the child’s medical condition and how it affects his or her ability to function on a daily basis. You will also be asked to provide information from the doctors, teachers, therapists, and other professionals who have assessed your child’s condition. The more information you are able to provide the more quickly the process will be completed. Your child must meet all of the following requirements to be considered disabled and, therefore, eligible for SSI: •

The child must not be working and earning more than $980 a month in 2009. (This earnings amount changes every year.) If he or she is working and earning that much money, your child will not be considered for disability benefits. There are different exclusions for students, so be sure to check with the Social Security Administration.

•

The child must have a physical or mental condition, or a combination of conditions, that result in “marked and severe functional limitations.” This means that the condition(s) must very seriously limit your child’s activities.

•

The child’s condition(s) must have lasted, or be expected to last, at least 12 months, or must be considered terminal.

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When your child turns age 18 For disability purposes in the SSI program, a child becomes an adult at age 18, and different medical and non-medical rules apply in determining whether an adult is eligible for SSI disability payments. For example, the income and resources of other family members are no longer considered when deciding whether an adult with a disability meets the financial limits for SSI. •

If your child was already receiving SSI payments, the child’s medical condition must be reviewed when he or she turns age 18. This review usually takes place during the one-year period that begins on your child’s 18th birthday.

•

If your child was not eligible for SSI before his or her 18th birthday because you and your spouse exceeded income or resources limits, he or she may become eligible for SSI at age 18.

For more information on any of these benefits, or to apply for Social Security or SSI payments, visit your local Social Security office, or call:

 Social Security Administration 1-800-772-1213 www.ssa.gov

Medicare & Medicaid Programs Medicare Medicare is a federal program of health insurance. It pays for acute illness situations. It is not designed to provide benefits for long term or custodial care. To be eligible, one must be 65 years of age and have paid into the Social Security system. If the person you care for is 65 or older and is already receiving Social Security benefits, he or she will be enrolled automatically in Medicare. Individuals receiving Social Security Disability benefits will get Medicare coverage automatically after they have received disability benefits for two years. If he or she is not already receiving Social Security, you will need to call the Social Security Administration.

Medicare Part A Part A is primarily hospital insurance. Following payment of a deductible, Medicare Part A will pay patient expenses for 60 days of hospitalization. After 60 days, the patient is required to pay a greater amount of the hospitalization cost. Part A will help pay, in certain circumstances, for limited stays in skilled nursing facilities, home health care, and hospice care. Most people do not have to pay a monthly premium for Part A.

Medicare Part B Part B pays for doctors' services, outpatient care, outpatient physical and speech therapy, some home health care, ambulance services, and some medical equipment and supplies. Part B is optional and requires a monthly premium. There is also an annual deductible that must be met before Medicare starts to pay its share.

Medicare Part C Medicare Part C offers Medicare Advantage Plans that combine your Medicare Part A (Hospital) and Part B (Medical). Private insurance companies approved by Medicare provide © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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this coverage. In some cases the premiums and/or co-pays can be lower than in the original Medicare plans. Medicare Advantage Plans offer a number of types of plans including Preferred Provider Organization (PPO) Plans or Health Maintenance Organization (HMO) Plans. These plans coordinate your medical care with some plans having stricter network and referral requirements than others. Many of the plans include Medicare Part D (Prescription Drug coverage). It is important that you read the plan information carefully to ensure you are selecting the right plan for you or your loved one.

Medicare Prescription Drug Plan Part D Medicare offers prescription drug coverage for everyone with Medicare. This is called “Part D.” This coverage may help lower prescription drug costs and help protect against higher costs in the future. It can give your loved one greater access to drugs that he or she can use to prevent complications of diseases and stay well. These plans are run by insurance companies and other private companies approved by Medicare. Part D is optional. Cost: If your loved one joins a Medicare drug plan, he or she usually pays a monthly premium. If he or she decides not to enroll in a Medicare drug plan when first eligible, there may be a penalty if he or she chooses to join later. If your loved one has limited income and resources, he or she might qualify for extra help paying for Part D costs. This is only a general overview of the system. There are many circumstances that will vary, depending on each individual situation. For more information, or a comprehensive look at the details of this program:

 Centers for Medicare & Medicaid Services (CMS) 1-800-MEDICARE www.medicare.gov Medigap Medigap is also called "supplemental insurance." Generally, a person must have Medicare Part A and Part B to buy a Medigap policy. There is a monthly premium for Medicare Part B. In addition, a premium must be paid to the Medigap insurance company. A Medigap policy is health insurance sold by private insurance companies to fill the “gaps” in original Medicare Plan coverage. Medigap policies help pay some of the health care costs that the original Medicare Plan doesn’t cover. If your loved one is in the original Medicare Plan and has a Medigap policy, then Medicare and your Medigap policy will pay both their shares of covered health care costs.

 www.medicare.gov/medigap/default.asp The State Health Insurance Assistance Program (SHIP) SHIP is a statewide program that provides free, objective information and assistance about Medicare, Medigap, and other Medicare insurance plans. Trained volunteer counselors are available to help you make informed choices. To contact counselors:  State Health Insurance Program (SHIP) 1-800-792-8820 www.state.nj.us/health/senior/ship.shtml  NORWESCAP (Local Office for SHIP) 973-989-5773

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Medicaid Medicaid is a needs-based health insurance available through Social Security Income (SSI), Division of Youth & Family Services (DYFS), Department of Developmental Disabilities (DDD), municipal welfare and the Office of Temporary Assistance (OTA).

Medicaid Home & Community - Based Waivers The loved one you care for may be over age 65 or have developed medical conditions that qualify as a disability. In addition to health insurance, Medicaid provides unique services to persons with a variety of disabilities through home and community-based waiver programs. The following is a list of some of the waiver programs available. You will need to contact each individual program to determine eligibility. As there are a number of waiver programs available in addition to the ones listed here, you should contact the Office of Temporary Assistance to determine if your loved one’s situation qualifies for a Medicaid waiver program.

 Morris County Office of Temporary Assistance (Medicaid Unit) 973-326-7878 www.morrishumanservices.org/hs/ AIDS Community Care Alternatives Program (ACCAP) This waiver is for those of any age with AIDS (Acquired Immunodeficiency Syndrome) and children up to age 13 who are HIV positive who are in need of institutional care and meet, at a minimum, the nursing facility level of care criteria. It provides full Medicaid benefits plus case management, private-duty nursing, medical day care, personal care assistant services, and hospice care. The purpose of the waiver is to help eligible individuals to remain in the community or to return to the community, rather than be cared for in a nursing facility or a hospital setting.

 Morris County Office of Temporary Assistance (Medicaid Unit) 973-326-7878 www.morrishumanservices.org/hs/ Community Resources for People with Disabilities (CRPD) Medicaid Waiver This waiver is for children and adults who have disabilities and/or visual impairments; it provides all Medicaid State Plan services as well as case management services. Services include personal care assistant, home health, medications, durable medical equipment, and physician services. New Jersey has recently requested adding new services to this waiver, including environmental modifications and a personal emergency response system. For information:

 NJ Division of Disability Services 1-888-285-3036, or 609-588-2620 www.state.nj.us/humanservices/dds/

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Traumatic Brain Injury (TBI) Medicaid Waiver This waiver is for people ages 18 to 65 with an acquired brain injury. It provides case management, counseling, community residential services, therapies, behavioral programs, environmental modifications, day programming, personal care assistant, transportation, respite care, night supervision, chore services, and companion services for those who qualify. For more information:

 Morris County Office of Temporary Assistance (Medicaid Unit) 973-326-7878 www.morrishumanservices.org/hs/ Community Care Medicaid Waiver (CCW) This waiver is for individuals registered with the Division of Developmental Disabilities (the disability had to have manifested before the age of 22), and provides case management, rehabilitation, individual supports, environmental and vehicle accessibility adaptation, personal emergency response system, and respite care. For more information:

 NJ Division of Developmental Disabilities 973-927-2600 (Northern Regional Office) www.state.nj.us/humanservices/ddd/index.html Global Options Medicaid Waiver On June 21, 2006 Governor Corzine signed the Independence, Dignity, and Choice in Long Term Care bill. This program was designed to enable Medicaid nursing home residents, who are medically appropriate, to return to the community by establishing a funding balance between nursing home care and community based care. New Jersey was a pilot state for this program, known as Global Options. Effective January 1, 2009, the following three Medicaid Waiver programs: Assisted Living, Caregiver Assistance Program (CAP) and Community Care Program for the Elderly & Disabled (CCPED), were consolidated into a single program now known as Global Options (GO) for Long Term Care. Who is Eligible for GO? An applicant must be 65 years or older or between the ages of 21 and 64 who shall be determined disabled* by Social Security Administration (SSA) or be determined disabled* by the Division of Medical Assistance and Health Services, Disability Review Section. Additionally, eligibility depends on whether there is an indication that the participant will need the level of care provided in a hospital, a nursing facility or an intermediate care facility in the near future (i.e, a month or less) unless he or she receives home and community-based services. * Individuals between the ages of 21 and 64 who are chronically mentally ill or developmentally disabled may be eligible after a service needs review by the DHSS/DHS Service Review Team. Are There Limits to GO Services? - Yes. The service package is based on an assessment of the individual’s level of care needs and is developed in collaboration with a case/care © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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manager. The service package builds on available supports, and takes into consideration the individual’s functional abilities, personal goals and preferences, risk factors, and availability of services. Who Provides these Services? - Services may be provided by traditional Medicaid community agencies or new qualified non-traditional entities. All service providers must demonstrate competence in the service to be provided and must meet qualification requirements, which have been approved by the federal government. What Services May be Provided? -GO participants are eligible for all New Jersey Title XIX Medicaid State Plan services authorized in a Plan of Care. Community choice counseling is available for nursing home residents. If an individual would like information or to be considered for Global Options, he or she and family members should speak with their nursing home’s social worker or discharge planner to determine if they are eligible and if this alternative is appropriate for them.

 Morris County Office of Temporary Assistance (Medicaid Unit) 973-326-7878 www.morrishumanservices.org/hs/ Medicaid’s Personal Preference: Cash & Counseling Demonstration Project This is a national research and demonstration project sponsored by the Robert Wood Johnson Foundation to study the effects of allowing Medicaid recipients with a disability who are eligible for Personal Care Assistance services to direct their own care. Through a monthly cash allowance, participants work with a consultant to develop a cash management plan by which they decide the services they need and the individuals and/or agencies they wish to hire to provide the identified services. The program requires greater consumer responsibility, but also offers participants greater control, flexibility, and choice. For more information:

 NJ Division of Disability Services 1-888-285-3036 www.state.nj.us/humanservices/dds/ State Children's Health Insurance Program (SCHIP) The State Children’s Health Insurance Program enables states to provide health insurance to children from working families with incomes too high to qualify for Medicaid, but too low to afford private health insurance. The program provides coverage for prescription drugs, vision, hearing, and mental health services and is available in all 50 states and the District of Columbia. Your state Medicaid agency can provide more information about this program, or for more information:

 1-877-543-7669 www.njfamilycare.org/index.html

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Assistance Programs for Individuals with a Developmental Disability Division of Developmental Disabilities (DDD) The NJ Division of Developmental Disabilities (DDD) has a host of financial services that may assist the individual with a developmental disability. For example:

Cash Subsidies If you are eligible for family support through DDD, you are eligible for a cash subsidy up to $2,400 every two years. This stipend is designed to help you pay for expenses needed for the benefit of the person with a disability, including respite, specialized equipment including a computer, guardianship expenses, and home modifications. For information, contact your DDD Case Manager.

Real Life Choices Real Life Choices is a program option based on self-direction. The vision of Real Life Choices shifts the power from the professionals to the individual and their family members, and it recognizes that the individual should be able to direct the delivery of their own services. The program looks at how the supports and services mapped out in a person’s plan of care builds independence, and at how satisfied the person and their family are with the results from that plan of care. The possibility for Real Life Choices can occur at two distinct points in time. The first is simply by graduating from high school. The second point is when an individual’s name comes up on the Division of Developmental Disabilities priority waiting list. Individuals in both categories must also qualify for the Community Care Waiver. Eligible individuals and their families are invited by DDD to an information and orientation session to learn about this new way of accessing services. For more information:  NJ Division of Developmental Disabilities 1-800-852-7899 (TDD users call through NJ Relay) www.state.nj.us/humanservices/ddd/index.html

General Financial Planning Financial Planners Professional financial planners look at a person’s long-term financial goals, and analyze assets, income, investments, and personal concerns. From there, the financial planner will provide advice and plans on how to maximize returns and minimize expenses through investments and reinvestments. To find a planner:

 Financial Planning Association 1-800-647-6340 www.plannersearch.org  National Association of Personal Financial Advisors 1-800-366-2732 www.napfa.org  AARP www.aarp.org © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Bill-Paying Services If your loved one is no longer capable of handling his or her own finances, sometimes an option is to hire an individual to pay all of the bills. These professionals will ensure that anything that is billed to your loved one is taken care of. A bill paying service will submit a report to the power of attorney. This report will include all of the money necessary to pay the bills for that month as well as the service fee.

 Senior Cents Family Service of Morris County This Family Service of Morris County program is a money management and advocacy program for older adults and/or people with disabilities in Morris County who are receiving case management services through NJ EASE. The program uses trained volunteers to enable older adults to control their finances and maintain their independence.

973-538-5260 www.fsmc.org  American Association of Daily Money Managers (AADMM) AADMM is a membership organization comprised of individuals who provide money management services. AADMM provides a listing of money managers by geographic area.

1-877-326-5991 www.aadmm.com

Financial & Tax Assistance/Savings Programs Temporary Assistance/General Assistance/Food Stamps This program provides a variety of financial, medical, and social services to persons/families who meet certain criteria, depending on your family size, monthly income, and assets and resources. For eligibility and benefits information, call your town’s Municipal Welfare Office, or:

 Morris County Office of Temporary Assistance 973-326-7800 www.morrishumanservices.org/hs/ New Jersey’s Homestead Property Relief Program The Homestead Credit/Rebate Program provides credits or rebates for homeowners and tenants who occupied their principal residence in New Jersey on October 1 of the year for which the credit applies, paid property taxes on that dwelling either directly or through rent, and whose gross income for the entire year does not exceed certain limits.

 Taxpayer Customer Service Center 609-292-6400 www.state.nj.us/treasury/taxation/

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New Jersey’s Property Tax Reimbursement Program also known as the “Senior Freeze” This program reimburses eligible senior citizens and people with disabilities for property tax increases. The amount of the reimbursement is the difference between the amount of property taxes that were due and paid in the "base year" (the first year that all eligibility requirements are met) and the amount due and paid in the current year for which the reimbursement is being claimed, provided the amount paid in the current year was greater. The applicant must meet all the eligibility requirements for the base year and for each succeeding year, up to and including the current year to qualify for the reimbursement.

 Taxpayer Customer Service Center 609-292-6400 www.state.nj.us/treasury/taxation/

Prescription Assistance/Savings Programs Pharmaceutical Assistance to the Aging and Disabled (PAAD) New Jersey’s PAAD program provides pharmaceutical assistance to residents 65 years of age or older or 18 years of age and older if receiving Social Security Disability benefits. This is a meansbased program. Single adults with annual income of less than $24,432 and married couples with annual income less than $29,956 in 2009 are eligible. Income eligibility changes annually. PAAD beneficiaries are also required to enroll in a Medicare Part D Prescription Drug Plan. They do not pay premiums, deductibles, or any out-of-pocket costs beyond the regular PAAD copayment of $6.00 for generic drugs or $7.00 for brand name drugs. People eligible for PAAD are usually eligible for the Lifeline Program and the Hearing Aid Assistance to the Aging and Disabled Program (HAAAD).

 NJ Department of Health and Senior Services 1-800-792-9745 www.state.nj.us/health/seniorbenefits/services.shtml Senior Gold Another program of the New Jersey State Department of Health and Senior Services, this State-funded prescription program has a different co-payment structure and higher income eligibility requirements than PAAD. Members pay a co-payment of $15 plus 50% of the remaining cost of each covered prescription until they reach annual out-of-pocket expenses exceeding $2,000 for single persons or $3,000 for married couples. When they have exceeded their annual out-of-pocket expense, they pay only the flat $15 co-payment per prescription for the remainder of the year. There are other restrictions and coordination with other insurance benefits or Medicare Part D.

 NJ Department of Health and Senior Services 1-800-792-9745 www.state.nj.us/health/seniorbenefits/services.shtml

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FamilyWize Prescription Drug Discount Card FamilyWize in partnership with United Way offers a free Prescription Drug Discount Card that can offer immediate savings on prescription drugs at participating pharmacies for people that have no health insurance, during deductible periods and for prescription medicine not covered by health insurance, Medicare or other benefit plans. It is not insurance, nor is it intended to replace insurance. It can save an average of up to 30% or more off the pharmacy's usual and customary retail price of prescription drugs, with the highest savings on generic drugs. The cost will be the discount price with the FamilyWize card or the pharmacy's usual and customary retail price, whichever is lower. For more information or to receive a card:

 United Way of Morris County 973-993-1160, ext 108 www.uwmorris.org/ourwork/heal_hliprojects.php …or  www.familywize.com Pharmacy Owners Providers Services (POPS) Provides all residents of Morris County and dependents in the same house, not currently covered through any government sponsored or employer-based prescription insurance program, with savings of up to 50% on prescription medications. An annual, non-refundable membership fee of $20.00, or a 3-year fee of $40.00, is required. You may use POPS at any participating Morris County pharmacy. There are no age, income, or pre-existing condition exclusions, no deductibles, no limits on quantities, and no forms to complete, except the initial application, along with proof of Morris County residency. For more information:

 Morris County Division on Aging, Disabilities and Veterans/NJ EASE 1-800-564-4656 www.morrishumanservices.org/dvs/ RX4NJ Rx4NJ is a website designed to help low-income, uninsured New Jersey residents get free or discounted brand-name medicines. State agencies and community organizations worked together with America's pharmaceutical companies to develop Rx4NJ. If you have a hard time paying for your medications, you may be eligible for help in paying for your prescriptions. Rx4NJ makes it very easy to find out if you or a loved one qualify for assistance. Follow the on-screen step-by-step directions. Once you provide the website with some basic information related to prescription medicines, income, and current prescription medicine coverage, Rx4NJ will be able to tell you what patient assistance programs you may be eligible for. If you are eligible, you will receive an application that can be printed out and returned directly to the drug manufacturer for final approval, after your doctor has approved and signed it. For information:

 www.rx4nj.org 1-888-793-6765

Other Assistance/Savings Programs Hearing Aid Assistance to the Aged and Disabled (HAAAD) HAAAD provides a $100 reimbursement to eligible persons who purchase a hearing aid. Persons must meet the PAAD eligibility requirements.

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 NJ Department of Health and Senior Services 1-800-792-9745 www.state.nj.us/health/seniorbenefits/services.shtml Personal Assistance Services Program (PASP) This is a state program for individuals from 18 to 65 years of age who are capable of self-direction. It provides routine, non-medical assistance to individuals with disabilities who are employed, preparing for employment, involved in community volunteer work, or attending school. Personal assistants help with tasks such as light housekeeping, bathing, dressing, preparing meals, shopping, driving, or using public transportation. The number of hours of assistance a person receives depends on individual need, up to a maximum of 40 hours per week.

 Morris County Office for the Disabled 973-285-6865 www.morrishumanservices.org/dvs/ Telephone Verizon offers two assistance programs for phone service for people with low incomes. Through Link Up America, eligible new customers receive a 50% discount on the initial phone connection charge, with the remaining 50% paid in 12 monthly installments. Through Communications Lifeline, existing Verizon residential customers may be eligible to receive discounted local telephone service. Communications Lifeline makes local telephone service available to people who might not be able to afford phone service. To see if you are eligible for Link Up America or Communications Lifeline:

 1-888-337-3339 Utilities Low Income Home Energy Assistance Program (LIHEAP) and Universal Service Fund (USF) The Low Income Home Energy Assistance Program (LIHEAP) is designed to help low-income families and individuals meet home heating and medically necessary cooling costs. Applications are usually accepted between November 1 and April 30. To apply for LIHEAP, you will need to contact the authorized local community action agency or community based organization in your area. To be eligible for LIHEAP benefits, the applicant household must be responsible for home heating or cooling costs, either directly or included in the rent; and have gross income at or below 225% of the federal poverty level. Persons who live in public housing and/or receive rental assistance are not eligible unless they pay for their own heating/cooling costs directly to the fuel supplier. The amount of the LIHEAP heating benefit is determined by income, household size, fuel type, and heating region.

See website noted below to find LIHEAP income eligibility levels. Please Note: The LIHEAP application is also an application for the Universal Service Fund Program (USF). You apply for two benefit programs at the same time using one application. USF is a program created by the State of New Jersey to help make natural gas and electric bills more affordable for low-income households. If you are eligible, USF can lower the amount you pay for gas

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and electricity. To be eligible, a household gross income must be at or below 175% of the Federal Poverty Level and pay more than 3% of its annual income for electric, or more than 3% for natural gas. If a household has electric heat, it must spend more than 6% of its annual income on electricity to be eligible.

For more information about USF:  1-866-240-1347 For further information on LIHEAP or to locate the nearest application agency:  1-800-510-3102 www.energyassistance.nj.gov Lifeline Utility Assistance Lifeline is a utility assistance program that offers a $225 credit on electric and gas utility bills for persons who meet the PAAD eligibility requirements or who receive SSI.

 NJ Department of Health and Senior Services 1-800-792-9745 or www.state.nj.us/health/seniorbenefits/services.shtml New Jersey SHARES A statewide, nonprofit 501(c)(3) organization which provides grants to pay the utility bills of households in need through a statewide network of more than 100 community-based social service agencies. For information on applying for assistance:

 1-866-NJSHARES www.njshares.org/

Medical Costs Catastrophic Illness in Children Fund A catastrophic illness is any illness or condition, acute or chronic, for which expenses are incurred that are not fully covered by insurance, state, federal programs, or other sources and exceed the program's eligibility threshold. Any illness can be considered "catastrophic" based on the amount of uncovered eligible medical expenses and the family's income over the prior 12-month time period. The following incurred expenses will be considered and may be eligible for payment/reimbursement if found reasonable. The categories include, but are not limited to:

• • • • • • • • •

Specialized pediatric ambulatory care Addictions/mental health services Acute or specialized hospital care, both in and outpatient Physician care in all settings Medical equipment or disposable medical supplies Pharmaceuticals Medically related home modifications and medical transportation Home health care Experimental medical treatment or pharmaceuticals following special review

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 NJ Department of Human Services – Catastrophic Illness in Children Relief Fund 609-292-0600, or 1-800-335-FUND www.state.nj.us/humanservices NJ Hospital Care Payment Assistance Program (Charity Care Assistance) This program offers free or reduced charge care to patients who receive inpatient and outpatient services at acute care hospitals throughout the State of New Jersey. Hospital assistance and reduced charge care are available only for necessary hospital care. Some services such as physician fees, anesthesiology fees, radiology interpretation, and outpatient prescriptions are separate from hospital charges and may not be eligible for reduction. Hospital care payment assistance is available to residents who: • • •

Have no health coverage or have coverage that pays only for part of the bill: and Are ineligible for any private or government sponsored coverage (such as Medicaid); and Meet both income and assets eligibility criteria.

For information on eligibility and on how to apply:

 NJ Department of Health & Human Services 1-866-588-5696 www.state.nj.us/health/cc/ Veterans An individual with a disability who is a veteran or whose parent or spouse is or was a veteran, may be eligible for monthly cash payments, assistance with educational costs, medical care, vocational assistance, rehabilitation, or other benefits. In addition, a person with a disability who is a veteran may be eligible for grants for specifically adapted housing. For more information:

 Morris County Division on Aging, Disabilities and Veterans/NJ EASE 1-800-564-4656 or 973-285-6866 www.morrishumanservices.org/dvs/  Veterans’ Affairs Hotline 1-800-624-0508, or www.va.gov

Other Funding Sources Home Modifications/Repairs Typical home modifications, such as building a ramp, widening doors, installing grab bars in the bathroom, or lowering countertops, can be very costly. While some home modifications are within the capacity of most do-it-yourselfers (such as changing door hardware from knobs to levers) other projects may require the aid of professional contractors. There are many different programs that can help pay for home modifications for people with disabilities. The Assistive Technology Advocacy Center (ATAC) of New Jersey publishes a home modification guide highlighting many of these programs. This guide is available online at the Disability Rights New Jersey (DRNJ) website:

 www.drnj.org

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Long Term Care Insurance About 44% of all people age 65 and older will need nursing home care at some point in their lives. The average age for entering a nursing home is 83. One-third of those who enter a nursing home will stay three months or less, and 20% will stay about a year. The balance of older adults, or about one half, will remain in a nursing home more than a year, at a current cost of about $100,000 per year. Private insurance can play a vital role in protecting against what, for some, can become an economic catastrophe. Often, at the point when caregiving is necessary, the opportunity to insure for long term coverage to help cover nursing home costs has passed, and the person needing care is deemed “uninsurable.” As a caregiver, you should become aware of the conditions of coverage of the insurance carried by the person you care for. Key things to watch for include: • • • •

• • • • • •

waiting periods policy requirements for Medicare approval what, if any, limits exist on daily medical benefits what are benefit coverages for: o Alzheimer’s o respite care o skilled, intermediate or custodial care types of care facilities covered or not covered are in-home services covered coverages for assisted living or community senior center ability to use benefit for care within a nursing home or facility benefits for personal grooming ability to upgrade to higher benefits or less restrictive coverage, protection against inflation

As a caregiver, you should review and write down key information in an easily accessible place, and know all insurance coverages, including home, auto, health, disability, and life. Easily accessible records should include location where actual policies are kept, and current contact information for each applicable agent.

As a caregiver, it is important to review key financial and insurance information, and keep copies of important documents, including those submitted to assistance programs. Take time to review insurance coverages, including home, auto, health, disability, and life, and keep records that include location where actual policies are kept, and current contact information for each applicable agent. Keep all records in an easily accessible place, and be sure to share with another family member where this important information can be found.

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8. Legal Matters Relating to Loved Ones with a Disability A list of key legal terms relating to caregiving for a loved one can be found in Appendix C.

The following is intended as a general informational overview of legal issues that caregivers should consider as they care for their loved one, and does not constitute legal advice. For specific legal advice, always seek professional counsel. If your loved one is over age 60, please also see the Caregiving for an Aging Loved One section of this guide for more information and resources.

It is important that the person for whom you provide care understands his or her legal rights, and that they take the necessary steps to protect themselves and their interests. Depending on circumstances, it may be important for you as the caregiver to be involved as well in legal matters. Of course, the depth of your involvement may change as care needs increase.

Legal Capacity A starting point for legal documents is having the mental capability to understand the meaning and importance of these documents. Stated differently, legal capacity is the level of judgment and decision-making needed to create legally binding wills, trusts and powers of attorney.

Key Legal Documents & Issues Power of Attorney A power of attorney is a legal document transferring decision-making authority to a person designated by you in advance. The power can be related to the management of your property or related to decisions about medical treatment. The power can be a “durable power,” meaning that it continues in the event of disability, or a “springing power,” meaning it takes legal effect only after disability. Unlike many other uses of the term “disability” - which might refer to a physical handicap, when the term is used within a Power of Attorney, “disability” means lacking mental capability to manage property or make decisions about medical treatment. A person in a coma would be an obvious example of having a “disability” and being unable to make decisions on his or her own. Caregivers should be aware of what, who, and where powers of attorney have been provided. These documents should be current, accessible, and understood by the caregiver.

Power of Attorney over Medical Decisions The Power of Attorney over Medical Decisions appoints a person to represent your loved one in making medical decisions for him or her. It defines the limits and extent of such power. Other terms used to describe a power of attorney over medical decisions are “power of attorney for health decisions”, “health care proxy,” “medical directive” and “advanced directive for health care”. © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Caregivers should also be aware of some key laws governing medical directives. The Patient Self Determination Act ensures that all adult patients know the extent of their right to control health care decisions, particularly through the use of health care directives. A living will is a type of advanced directive related to medical decisions for the terminally ill. The living will comes into play when a person’s condition is terminal with no expectation of recovery. The living will sets forth the type of medical care, the extent of life support, the possible removal of life support and instructions as to how and where your loved one would like to be cared in the final stage of life. The New Jersey Advance Directives for Health Care Act requires a doctor or hospital to make an affirmative inquiry to find out if your loved one has any advanced directives. As a final point, make sure that all those named in your loved one’s power of attorney are aware, have a copy of the document and have access to the original should they ever need to act for your loved one under that power. Also, make sure to have one or two back-ups named on these documents.

Living Will A living will, as mentioned above, is a type of directive providing comprehensive instruction as to the medical situations where a patient would want to be kept alive and what measures should or should not be used to prolong life or delay death. A living will is a critical legal document for you as it clearly articulates the wishes of your loved one. Without such instruction, you, as the caregiver, could be left speculating as to how, when and to what extent your loved one wants medical means to continue or not continue his or her life. Their guidance is most instructive and important. His or her directions go a long way to help ease your burden in carrying out decisions that your loved one may not be able to make independently.

Will A will is an important document for anyone. Caregivers should be familiar with the uses of a will. A will is the written statement of a person’s wishes as to the disposition of his or her property following death. It takes effect upon death. Up until death (providing mental capacity as discussed above), a will can be amended or revoked. The person executing the will is known as the “testator.” To make a valid will, the person must possess the mental capacity to know what he or she is doing. It is not an excessively high standard of “awareness” but does require awareness of some essential facts. For example, does the person know if he is married and if his spouse is alive? If he has children, can he name them, know approximately how old they are and where they live? Does he know, roughly, what he owns, such as houses and bank accounts, and does he understand that the purpose of a will is to leave the things he owns to the person whom he names in the will? If the person cannot be conversant about such basic facts, more than likely he does not have the mental capacity to execute, modify, or rescind a will. Capacity is measured at the time a person makes and signs his or her will. This is important as many elders and people with disabilities, who may be beginning to lose mental capacity, may have good days and bad days. So long as the person makes the will or changes to the will on a day in which he had mental capacity to understand what he was generally doing, and this can be later proven, then the legal system will uphold the wishes of the “testator.” A will accomplishes a number of important issues. A will allows for the nomination of an executor; without a will, the state would determine who is to serve as executor of your estate. © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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A will avoids “intestacy.” Intestacy is where, in the absence of a will, state law dictates who inherits a person’s probate assets. A will allows a person to define who gets what property. Often a person wants to provide a specific person with a specific item of property. A will allows for such special bequests. A person may want to distribute property unequally to children, as children often have different needs; a will allows for such unequal distributions. A person may want to disinherit a natural heir; a will allows for disinheritance. A will allows for the nomination of a guardian or trustee, if the person dies with minor children. As stated above, a will dictates who inherits your loved one’s “probate assets.” Not all assets are “probate assets.” That depends upon how the assets are owned. Assets which are “not” probate assets pass directly to the person named as “beneficiary” or co-owner of the asset. Examples of assets which could pass directly and avoid probate would be joint accounts, assets in a revocable living trust, pay-on-death accounts, transfer-on-death accounts, annuities with a named beneficiary, life insurance with a named beneficiary, certificates of deposits with a named beneficiary, individual retirement accounts with a named beneficiary, and assets owned “tenancy by entireties.” It is important to note that many of these assets have a “named beneficiary,” which should be reviewed annually as life changes.

Trusts A trust is a contractual three party arrangement where one person transfers property to another person to hold in trust for the benefit of a third person. While that may sound confusing, a properly designed trust accomplishes as much as a will, while providing a greater flexibility for life and estate planning. A trust may be “revocable” or “irrevocable.” A trust may exist while your loved one is living (living trust) or created via a will (testamentary trust).

Irrevocable Trust An irrevocable trust cannot be amended or changed. The person transferring the property (the “trustor”) cannot later change his or her mind. There are many tax and planning reasons why a person would transfer property through an irrevocable trust.

Revocable Trust A “revocable” trust can, by its definition, be amended or changed. Like a will, the person transferring the property can change his or her mind or change the terms of the trust. It is completely flexible. As such, a revocable trust serves a wide variety of needs related to lifetime planning, extending control over your loved one’s estate following death and minimizing succession transfer costs, such as probate avoidance and reduction of estate taxes. For a trust to be “living,” it must be what is called “funded.” This simply means that the “grantor” has transferred assets currently owned into the trust. It makes little sense to create a “living trust” and then not transfer or convey the ownership of property into the trust. Examples of property to be placed or funded into a living trust would be real estate, annuities, stocks, bonds, and bank accounts. Vehicles can be owned by the trust depending on the situation. Special tax deferred investment accounts such as IRAs and pension rights are usually not owned by a revocable living trust. A revocable living trust does all that a will does, plus more. It allows for the continued management of your loved one’s assets should he or she become disabled. A trust avoids the need, delay, and cost of probate. A will becomes a public document; a trust does not and, thus, is a great way to keep your loved one’s affairs private.

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Special Needs Trust The only reliable method of making sure that an inheritance actually has a chance of reaching a person with a disability when he or she needs it is through the legal device known as a Special Needs Trust (SNT). The SNT is developed to manage resources while maintaining the individual's eligibility for public assistance benefits. By leaving whatever resources it deems appropriate to the trust, the family ensures that the money is available to the person with the disability. A trustee on behalf of the person with the disability manages the trust.

Letter of Intent A will and a special needs trust are important, but these documents rarely carry out the wishes of the family as intended unless the parents build a strong planning foundation by first developing a comprehensive and flexible life plan for and with the person with a disability. A letter of intent is a non-legal document that allows the parents of a person with a disability to put into writing their wishes for their child. The parents are asked to decide what they want for their child in all of the major live areas: residential placement, education, employment, socialization, religion, medical care, final arrangements and so on. For more information on estate planning and a Letter of Intent:

 www.kidsource.com/kidsource/content4/estate.dis.all.3.html

Future Planning Guardianship All individuals become legal adults at age 18. This is true for individuals with disabilities as well. As a parent of a child with a disability you must apply for guardianship when your child turns 18; you do not automatically become the guardian just because your child has a disability. If the disability occurs after the age of 18 and your loved one is unable to act as his or her own guardian, you will need to follow the same procedure. When no advance directive exists and a person becomes unable to manage his or her personal or property affairs – life’s decisions, including medical decisions, come to a halt. In that situation, the caregiver, or other involved individual/organization, must go to the Court and petition for a Letter of Guardianship. Guardianship is basically Court supervised decision-making by another person. Guardianship takes two forms. A guardian of the property has authority to manage the financial affairs for a senior or someone with a disability. A guardian of the person has authority to make health care decisions for the senior or someone with a disability. New Jersey sets forth a priority of persons who may serve as guardian, with the spouse or next of kin first in line for consideration. Appointment of a guardian is a Court process governed by statute. It requires a Complaint often filed by a family member (“petitioner”), two doctors stating the person is mentally unable to handle their own affairs, a court appointed attorney to represent the individual, and the petitioner’s attorney. Then, a hearing will be scheduled. Following the hearing, a judge will rule on the Complaint and if appropriate, issue a judgment appointing guardianship. If at some later time, your loved one gains the capacity to manage his or her affairs, the guardianship can and should be terminated.

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There are two types of guardianship:

Limited Guardianship The guardian is limited by the conditions in which they will have authority. Limited guardianship is appropriate when the individual with the disability is still able to make some of his or her own decisions, but may need assistance with major decisions, such as financial or medical decisions. Plenary Guardianship The guardian is assigned total decision-making authority. The individual with the disability is not able to make any of his or her own decisions. There are two ways to appoint a guardian for a person with a disability. You can apply through DDD, which can be time consuming, or you can apply with a private, special needs attorney. If you choose to use a private attorney, make sure that the attorney you choose has a concentration in special needs issues. Your child’s school, or agencies you deal with, or other families in your situation can most likely recommend attorneys that are knowledgeable and experienced in this area. If the individual for whom guardianship is being requested is registered with the Division of Developmental Disabilities, the caregiver can apply for a stipend from DDD to help cover the cost of an attorney for guardianship services. When you apply through DDD, the Division becomes the guardian for the individual with the disability. This is appropriate in cases where there is no one to take responsibility for the person, and he or she is unable to be his or her own guardian.

Burial Fund A burial fund is money set aside to pay for burial expenses. This money can be in a bank account, other financial instrument, or a prepaid burial arrangement. This can be helpful to eliminate emotional stress and financial burden on a caregiver, or other family member at the time of a person’s death. Parents of a child with a disability can set up a burial fund to ensure that their child’s end-of-life costs are covered if they will not be here to address these needs. The maximum dollar amount allowed in a burial account is $1500 per person. A good resource for information on funeral arrangements is www.aarp.org/families/grief-loss/ Probate and more: For information about how to probate a will, executor duties, taxes, and more, please see Caregiving for an Aging Loved One, Chapter 8.

Conclusion: This overview is very general, and many items of estate administration have not been covered. For example, individual situations may include other issues like administration of a trust, children under 18 years of age, property that does not go through probate, transferring joint tenancy and other survivorship property, claiming monies from retirement plans, special procedures for small estates, and handling bypass trusts. For these and other issues, professional advice is strongly recommended.

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9. Day Programs & Home Care Programs for Loved Ones with a Disability There are a variety of day care and home care services available in the community, depending on your loved one’s disability. For persons with developmental disabilities, these can range from adult day programs to in-home supports and respite and could be part of a “Self-Directed” plan. 1. Adult training services help individuals with basic vocational skills, such as those needed to develop social skills, manage money, and take care of their homes. It includes extended employment at sheltered workshops, where individuals receive work-related training, such as learning how to package and assemble products, as well as job counseling and job referrals. 2. Supported employment services include: on-site job coaches; crew work, in which an individual works as part of a peer group; and arrangements in which a consumer can sample different jobs to find a good "fit." For persons with all disabilities, the following may or may not apply, depending on the level of care needed:

Medicaid Personal Care Assistant (PCA) This is a statewide service reimbursed by the New Jersey Medicaid Program for people eligible for Medicaid services in the community. The purpose of personal care is to accommodate longterm chronic or maintenance healthcare as opposed to short-term skilled care as is provided under Medicaid’s home health program. PCA services are health-related tasks performed by qualified staff in an eligible beneficiary’s home or workplace. Services include assistance with activities of daily living and household duties essential to the individual’s health and comfort.

 Morris County Office of Temporary Assistance (Medicaid Unit) 973-326-7878 www.morrishumanservices.org/hs/ Personal Assistance Services Program (PASP) This is a state program for individuals from 18 to 65 years of age who are capable of selfdirection. It provides routine, non-medical assistance to individuals with disabilities who are employed, preparing for employment, involved in community volunteer work, or attending school. Personal assistants help with tasks such as light housekeeping, bathing, dressing, preparing meals, shopping, driving, or using public transportation. The number of hours of assistance a person receives depends on individual need, up to a maximum of 40 hours per week.

 Morris County Office for the Disabled 973-285-6865 www.morrishumanservices.org/dvs/

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Adult Day Programs Adult Day Programs are also known as “adult day services.” There are three types of day programs: Medical Day Care, Social Day Care, and Gero-Psychiatric Care. Programs are designed for adults, and eligibility is based on age, rather than disability. Each type of service provides care with a planned program of activities designed to promote well-being through social activities and/or health related services for adults who are isolated or need assistance in activities of daily living. These services operate during the day. Meals are provided. In some cases, transportation to and from the facility is also available. Payment for services includes private payment and, in some instances, Medicaid.

Home Care Options Home care allows older people to remain in their own homes while receiving the assistance they need to help them remain independent. Services are delivered at home to recovering, disabled, chronically or terminally ill persons in need of medical, nursing, social, or therapeutic treatment and/or assistance with the essential activities of daily living. Generally, home care is appropriate whenever a person prefers to stay at home but needs ongoing care that cannot easily or effectively be provided solely by the caregiver and circle of friends. Services may be provided as frequently as needed, ranging from daily visits to 24-hour stays. Accepted methods of payment include private pay, commercial insurance and Medicare or Medicaid.

Home Health Care Coverage Home health care may be covered under Medicare, Medicaid, private pay, or insurance. A person qualifies for these services if they have a “skilled need” for a nurse or rehab therapist (physical, occupational, speech therapist). These skilled services generally last a short time (6-8 weeks.) A home health aide may also come for a short visit to provide personal care during this time. Often these services are ordered when you come home from the hospital, but they can also be ordered by your doctor in order to prevent a hospitalization.

Home Care Agencies These agencies provide personal care (bathing, dressing, toileting,) meal preparation, household chores and supervision. These services are available by a certified home health aide on an hourly basis or as a 24 hour live-in and are generally paid privately.

Hospice Hospice is a program of care for terminally ill patients and their families that takes place in the home, a nursing home, or dedicated hospice unit. The goal of hospice is to provide physical, emotional, and spiritual support with a dignified, peaceful approach to comfort in the final months of life, regardless of disease. Hospice care is covered under Medicare, Medicaid, and most private insurance. No one is denied hospice care because of an inability to pay. To find a hospice provider:

 New Jersey Hospice & Palliative Care Organization 908-233-0060 www.njhospice.org  2-1-1 First Call for Help Dial 2-1-1, or 1-800-435-7555 www.NJ211.org  National Hospice and Palliative Care Organization Information on end-of-life issues and state-specific advance directives. 703-837-1500 www.nhpco.org © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Non-Medical Companion Agencies These agencies are designed for individuals who need minimal care. These services will typically provide personal services in the home, relating to daily activities such as dressing, cooking, medication supervision, cleaning and transportation. These services are paid privately.

Nutrition Programs There are 15 “Midday Friendship Centers” located throughout Morris County, providing a hot midday meal and the opportunity to socialize with others. For those who are homebound, meals can be delivered.

 Morris County Nutrition Project 973-285-6856 www.morrishumanservices.org/dvs/

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10. Employment & Volunteering for Loved Ones with a Disability As caregivers, we want our loved ones to lead as full a life as possible. For people with disabilities, employment often helps to promote independence and the chance to lead a more productive and fulfilling life. Vocational rehabilitation services assists those who are disabled in the development, acquisition, or updating of skills that will enable them to secure and maintain employment. This may include working in the labor force, operating his or her own business, and/or working in what is known as “supportive” employment.

NJ Division of Vocational Rehabilitation Services (DVRS) The mission of the New Jersey Division of Vocational Rehabilitation Services is to enable people with disabilities to achieve employment consistent with their strengths, priorities, needs, abilities, and capabilities. The Division will help individuals with disabilities who are having trouble finding or holding a job because of their disability. If your loved one has a disability that is preventing him or her from working, or which is endangering his or her present employment, call for more information:

 Morris County DVRS office 973-631-6304 http://lwd.dol.state.nj.us/labor/dvrs/DVRIndex.html NJ Commission for the Blind and the Visually Impaired (CBVI) The New Jersey Commission for the Blind and Visually Impaired promotes and provides services in the areas of education, employment, independence, and eye health with persons who are blind or visually impaired, and their families. For more information:

 973-648-3333 www.state.nj.us/humanservices/cbvi/dhsvoc Employment Services through State Agencies Both state agencies, DVRS & CBVI, will provide employment services for persons with disabilities. Individuals with visual impairments will receive support through CBVI, while those with other disabilities will be served through DVRS. Based on the individual circumstances, the following types of employment services are available: Pre-vocational evaluation is a comprehensive, individualized, and systematic process in which an individual, in partnership with an evaluator and DVRS counselor, learns to identify vocational options consistent with his or her abilities, capabilities, preferences, and interests and to develop employment goals and objectives. Work adjustment training is a comprehensive, individualized service that helps people develop or reestablish skills, attitudes, personal characteristics, work behaviors, and/or functional capacities, to achieve the identified employment goals.

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Extended (sheltered) employment is a program designed to provide long-term employment by the community rehabilitation program of an individual who is presently unable to work in the competitive labor market. An individual is frequently paid less than minimum wage based upon time studies identifying his/her ability. Supported employment increases the opportunity for individuals who might require augmented levels of support, training, and advocacy to be employed in real jobs for competitive wages. Those needing these services are most often people with multiple disabilities who have never worked before or have not been in the workforce for many years. This program is intended for those who require intensive individual training on or off the work site and who, once they have learned the job and other routines, will require long term follow along services, on the job site and/or off the job site. A job coach works with each individual and their VR counselor to perform a broad range of functions including helping complete job applications, seeking out appropriate transportation, and arranging the necessary accommodations in the worksite. These services are provided through community based agencies. Post Employment Supports DVR provides post employment support for up to 90 days after the individual becomes stable on the job, thus ensuring a smooth transition into the workforce. Sometimes employment barriers are not identified until after a person goes to work (e.g. childcare issues, unreliable transportation, requirements of the job changes, need for additional accommodations becomes apparent, etc.) This additional support enhances the likelihood of a more compatible job match.

Other Important Definitions Relating to Employment Career Counseling – one-on-one counseling to help determine individual vocational goals. Internship – provides companies with workers for a specific time frame to utilize training in a nonpaid work experience. Job Coach – professional trainer to assist in all transitional phases of employment. A job coach may act as a liaison between employer and employee. Job Sampling – allows candidates to sample different work environments to determine interest and ability. Job Shadowing – allows candidates to observe a real work environment. Student shadows an employee for a day on targeted tasks. Subcontract Work – an agency providing the facility and employees to do packaging, assembly, collating, and various other production work. Work Opportunity Tax Credit – a federal program designed to encourage employers to hire persons who have special difficulties in finding work by giving these employers tax credits on their federal taxes. Vocational Evaluation – a short term program that measures a person’s potential strengths, limitations and work behaviors.

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Morris County Veteran’s Services Office This office assists veterans with regard to their employment rights and provides referrals for job assistance and training. For more information:

 973-285-6866 www.morrishumanservices.org/dvs/

What happens if your loved one is receiving government benefits and wants to work? One of the Social Security Administration’s (SSA) highest priorities is to help individuals with disabilities achieve independence by helping them to take advantage of employment opportunities. There are employment support provisions in place to assist an individual to move further on the way from benefit dependency to independence. Employment supports help an individual enter, re-enter, or stay in the workforce by protecting eligibility for cash payments, and/or health care until their goal is achieved. For detailed information:

 “Working While Disabled—How We Can Help www.socialsecurity.gov/pubs/ Volunteering Volunteering in the community can provide individuals with disabilities greater independence and help them to lead productive, fulfilling lives. In addition, volunteering can be a stepping-stone toward acquiring and maintaining skills that may lead to gainful employment. There are many different opportunities for volunteering in the community, such as local religious organizations, food pantries, shelters, not-for-profit organizations, etc. In addition, Volunteer Management Center, Inc. (VMC) can connect individuals to volunteer opportunities in their local communities.

 Volunteer Management Center, Inc (VMC) 973-538-7200 www.vmcnj.org

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11. Housing for Loved Ones with a Disability There are various housing options available for people with disabilities. A good starting place may be the New Jersey Housing Resource Center (NJHRC). The NJHRC is a partnership between the NJ Department of Community Affairs, the NJ Department of Human Services, Division of Disability Services and the NJ Housing and Mortgage Finance Agency. They provide an online tool to assist people with disabilities in finding affordable housing.  NJ Housing Resource Center 1-877-428-8844 http://www.njhousing.gov/njhrc/affordable_housing.html

Types of Housing Public Housing The largest group of affordable units is public housing. Housing authorities administer this federal program. New Jersey has about 100 housing authorities. Housing authorities get federal funds to build and run public housing developments. Most have rental units, but some have houses for sale. Rents and sale prices depend on household income and can be no more than 30% of adjusted earnings. People who live in public housing earn less than 80% of median family income. Federal rules require housing authorities to keep a certain percentage of these units for very low-income households, earning 50% or less than median family income. Some housing authorities must reserve units for extremely low-income households with earnings at or below 30% of median. Use federal income standards to determine eligibility. All rental units must be within Fair Market Rent. Housing authorities may have waiting lists, depending on local conditions. Public housing authorities may give priority to people who live or work in the communities they serve. The people who operate these authorities are an excellent resource. They know the local housing market and are aware of other programs and opportunities that might be available. The following are County and Municipal Housing Authorities in Morris County:

    

Boonton Housing Authority: Dover Housing Authority: Madison Housing Authority: Morris County Housing Authority: Morristown Housing Authority:

973-335-0846 973-361-9444 973-377-0258 973-540-0389 973-538-6343

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Subsidized Housing Rental vouchers are available to individuals and families who are low- or very low-income. To determine whether your loved one meets these income criteria, consult the HUD published “Income Limits” page on the HUD website: www.huduser.org/datasets/il.html. The income limits change every year. Some New Jersey programs use income limits published by the Council on Affordable Housing (COAH) – these numbers are similar to HUD’s, but slightly different: www.state.nj.us/dca/affiliates/coah/reports/incomelimits.pdf Some voucher programs have “set-asides” for those who are considered low or moderate income (below 80% of the Area Median Income), those who have special needs (such as a physical, developmental or psychiatric disability) and those over age 62. If your loved one falls into any of these categories, ask for information on programs specific to that group(s). There are two types of rental vouchers – those that are tenant based and those that are project based: Tenant based vouchers are provided directly to the tenant, and allow the tenant to pay a portion of their income toward rent. The amounts vary by program, but typically, the tenant pays 30% 40% of the monthly household income toward rent and utilities – the remaining rent is paid directly to the landlord from the subsidy provider. When the tenant moves, the voucher can be transferred to another rental unit. Agencies often have waiting lists for vouchers. Depending on the length of the lists, the agency may “close” the list until the number falls beneath a certain threshold. Assuming that you’ll be placed on a waiting list, it is advised that you contact as many agencies that you can. There is no penalty for being on more than one list (but ultimately, you can only accept one voucher). Each agency may represent a different geography and/or type of housing. The following agencies offer tenant based vouchers:

     

Boonton Housing Authority: 973-335-0846 Dover Housing Authority: 973-361-9444 Madison Housing Authority: 973-377-0258 Morris County Housing Authority: 973-540-0389 Morristown Housing Authority: 973-538-6343 NJ Dept. of Community Affairs 609-292-4080 www.state.nj.us/dca/divisions/dhcr/offices/srap.html

Project based vouchers are attached to the property, which means a tenant is entitled to the rental subsidy for as long as they live in that unit. When a tenant moves, the voucher is given to the next tenant in that unit. Tenants pay 25% - 40% of monthly household income toward rent and utilities, depending on the subsidy program attached to the project. Some agencies that provide housing to people with disabilities may have at least some units that have project based vouchers. These programs typically have long waiting lists. For more information on options:

    

Boonton Housing Authority: Dover Housing Authority: Madison Housing Authority: Morris County Housing Authority: Morristown Housing Authority:

973-335-0846 973-361-9444 973-377-0258 973-540-0389 973-538-6343

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 USDA Multi Family Apartments in Morris County: Robert E. Cole Apartments in Chester 908-879-9050 Heritage Manor Apartments in Mendham 973-543-2666 Morris Mews 99 Ketch Road Contact through the Morris County Housing authority: 973-540-0389 Some service provider organizations have also developed projects that are accessible and affordable for people with disabilities.  United Cerebral Palsy of Northern, Central and Southern NJ 908-879-2243

www.ucp.org/ucp_localsub.cfm/100/8605/16457

Legal Services of Northwest Jersey provides a comprehensive guide addressing landlord and tenants rights. To receive a copy: 973-285-6911

Specialized Housing for Individuals with a Developmental Disability (DDD eligible) If you are seeking state-funded residential services for a person with a developmental disability in the State of New Jersey you must be in the DDD system. When it is no longer possible for a person with a developmental disability to remain living at home, DDD may help the family make other living arrangements that best meet the individual’s needs. Individuals who receive residential services may be required to contribute toward the cost from their disability benefits or other personal resources. There currently is a “Community Care Waiver Waiting List” for residential programs. Individuals should be served in the order in which their names were added to the list. Should circumstances arise that make it impossible for the individual to remain in the home with appropriate supports, the DDD case manager should be called immediately. The case manager will work with the individual to either find them emergency placement or give them services in the home if they can remain living there alone. The Division should work with the individual and the family to determine the most appropriate option for the individual. The Division provides a variety of community residential options, including: Group Homes These homes feature on-site, 24-hour staffing support to serve the individual and no more than three roommates.

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Supervised Apartments These are apartments in which an individual lives alone or with a roommate or roommates. The apartment is leased or owned by a service provider agency, which also employs staff that is available to serve the individual 24-hours a day. Supportive Housing Here a consumer leases his or her own apartment, and help is available on an as-needed basis either in person or through phone contact 24/7. Community Care Home In this situation, the individual lives as part of the family of a trained caretaker, and receives 24-hour care and assistance from that person and from an agency on a routine basis. For information on housing options through DDD, contact:

 NJ Division of Developmental Disabilities 973-927-2600 (Northern Regional Office) www.state.nj.us/humanservices/ddd/services/residential/index.html Home Ownership This is an option for individuals and/or families with sufficient resources. For those individuals registered with DDD, they may combine personal and Division funds and/or pool funds with other individuals to rent a house or condo.

Additionally, all first time home owners, people with any type of disability or seniors may be eligible for funding from the state Housing and Mortgage Finance Agency to purchase a home or even repair an existing home.

New Jersey Housing and Mortgage Finance Agency The New Jersey Housing and Mortgage Finance Agency (HMFA) has many housing programs funded from the sale of bonds. Some provide mortgage assistance and closing costs to homebuyers. Others help homeowners repair the houses they already own. Those looking to buy a house or condominium should consider calling HMFA to see about the availability of homebuyer assistance programs. For information on HMFA’s programs:

 HMFA 609-278-7400 www.state.nj.us/dca/hmfa/  HMFA Mortgage Hotline 1-800-NJ-HOUSE 1-800-654-6873 NJ Housing Resource Center provides an online tool to help people with disabilities find housing options: http://www.njhousing.gov/njhrc/affordable_housing.html © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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12. Transportation Information for Loved Ones with a Disability There are several transportation resources available to Morris County residents with disabilities.

2-1-1 First Call for Help 2-1-1 First Call for Help now operates statewide, connecting people with the resources they need to solve common life problems, including transportation. It is staffed 24/7 and can be accessed by dialing 2-1-1.

 Dial 2-1-1, or 1-800-435-7555 www.NJ211.org Morris County Public Transportation The Morris County Department of Transportation can provide you with a free Transit Guide of the Morris County public transportation system. Their website can provide you with transportation information and alternatives, including rail, bus, paratransit, park-and-rides, bicycle and pedestrian travel, and ridesharing. Numerous links to other transportation resources are available on this website.

 973-829-8101 www.morrisdot.org NJ Transit NJ Transit provides reduced fares for senior citizens and those with a permanent disability. Senior citizens and passengers with disabilities can travel on-board NJ TRANSIT trains, buses, and light rail vehicles at a reduced fare of one-half the regular one-way fare or lower. Seniors and passengers with disabilities must present an NJ TRANSIT Reduced Fare ID or Medicare Card to obtain the reduced fare ticket. To receive discounted fares, a NJ TRANSIT Reduced Fare Card/Reduced Fare ID application must be submitted. A Social Security Card and proof of age (a birth certificate or a driver's license) must be presented when applying. Applications can be found at most local banks, savings and loan associations, or county Offices on Aging. Applications are also available at the NJ TRANSIT Customer Service offices at Newark Penn Station, New York Penn Station, Hoboken Terminal, and the Port Authority Bus Terminal. An application can also be mailed to you. For more information:

 NJ TRANSIT Reduced Fare Office 973-378-6401 www.njtransit.com/sf/sf_servlet.srv?hdnPageAction=ReducedFareTo

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Access Link NJ Transit also provides paratransit services for those people whose disability prevents them from using the local fixed route bus service. This service is called Access Link and eligibility is determined using the three categories provided in the ADA. Your loved one may be eligible for Access Link if: 1. If he/she cannot get on or off a bus or ride in an accessible bus due to a disability 2. If his/her disability prevents him/her from getting to a bus stop 3. If accessible bus service is not available in their area The cost of this service is the cost of the usual bus fare to the desired destination. To apply for Access Link an assessment is necessary. Transportation can be provided for the assessment appointment. To arrange for an assessment:

 NJ Transit 1-800-955-2321 (TTY 1-800-955-6765) www.njtransit.com/tm/tm_servlet.srv?hdnPageAction=AccessibleServicesTo Handicapped Parking Passes Handicapped parking passes are available for drivers who have lost the use of one or more limbs or are permanently disabled and cannot move without an assisting device or those who transport individuals with such disabilities on a regular basis. For more information:

 NJ Motor Vehicle Commission 609-292-6500 or 888-486-3339 www.state.nj.us/mvc/Vehicle/HandicappedPlates.htm MAPS MAPS (Morris Area Paratransit Services) is administered by the Morris County Division on Seniors, Disabilities and Veterans and provides transportation to medical facilities, education or employment sites, adult day care centers, and other locations. Most MAPS vehicles are able to accommodate wheelchairs. Your loved one may use MAPS if he or she is a Morris County resident and is age 60 or above, OR if he or she has a physical or mental disability that includes functional limitations. MAPS must be notified in advance if a caregiver will be traveling with the resident. For more information:

 888-282-MAPS (6277) www.morrishumanservices.org/dvs/ TransOptions As the Transportation Management Association (TMA) for northwest New Jersey, TransOptions assists commuters, businesses, and local municipalities in Morris, Sussex and Warren Counties, as well as towns in suburban Essex, Passaic, and Union Counties with multiple commute options. TransOptions is available to assist your loved one with transportation issues or questions regarding services in his or her area. For more information:

 973-267-7600 www.transoptions.org

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American Red Cross of Northwest NJ Provides transportation for veterans to medical appointments and VA hospitals. For more information:

 973-538-2160 Daughters of Israel, West Orange, NJ Provides limited fee for service transportation through their Metro Transport Program for eligible seniors and people with disabilities. In Morris County, service is only available to Parsippany, East Hanover, Florham Park, Morristown, and Whippany. For information:

 973-325-1359 Dial-A-Ride Dial-A-Ride is municipally-sponsored local transportation for senior citizens and persons with disabilities. Many towns in Morris County offer Dial-A-Ride service. For a list of municipalities with phone numbers, visit:

 www.co.morris.nj.us/transportation/spectrans/spectrans-dialaride.asp FISH (Friends in Service to Humanity) Volunteers provide rides, primarily to and from medical appointments.  For Mendham Borough and Township residents only: 973-543-4574.

Morris on the Move (M.O.M.) M.O.M. can provide transportation for up to 18 passengers and two wheelchairs. Priority is given to public assistance and other low income residents commuting to or from work or work related activities. M.O.M. operates a shuttle service from Dover to Mt. Olive. Service is limited. For more information:

 973-829-8501 Morris County Organization for Hispanic Affairs Transportation is available for individuals in need. For more information:

 973-366-4770

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13. Advocacy for Loved Ones with a Disability Self Advocacy Self-advocacy is defined as knowing your rights and responsibilities, standing up for them, and making choices about your own life. As a parent or caregiver, in most instances you are your loved one’s best advocate. However, it is also important to encourage the individual to learn how to advocate for themselves. No matter what the individual’s level of ability, the capability for an individual to advocate for himself or herself is the first step in getting the assistance that individual may need. Whether the individual is born with a disability or acquires one later in life, the skill of selfadvocacy is one of the most important and critical skills for that individual. As a caregiver, helping that individual acquire that skill is sometimes difficult because you have become accustomed to taking care of that individual. It is a difficult but necessary task to ensure the individual has the opportunity to be responsible for him or herself. Being aware of and informed about services available to you and your family (and when these services end) as well as the individual’s rights can make the road to planning easier to navigate.

Keys to Successful Advocacy on Behalf of Your Loved One Communicating effectively with professionals and learning how to navigate the system are important skills for the caregiver to learn and develop. These can be acquired through help from other caregivers or caregiver coalitions.

Be patient If your loved one needs something, understand that this does not mean that he or she will get it right away. When students need a service or a piece of equipment while they are still in school, it generally gets put in place pretty quickly. That is because the laws set up for people in schools say that students are entitled to many of the things they need to be successful. Sometimes this is referred to as an entitlement- based system. After graduation and moving on to adult services, the laws are set up differently. Most government and private agencies are not able to offer enough services to help everyone needing their assistance, so people usually have to apply for services. This is sometimes referred to as an eligibility- based system. Depending on the organization, services or other assistance could be distributed on a first- come first-served basis, or to those who need the service the most. It is up to you to know how the organization you are trying to work with makes these decisions and plan accordingly. Sometimes, there may even be long waiting lists for services. You may not know how long it takes to get to the top of the waiting list and get what you need, but one certainty is that if you don’t apply and get on the list, you will not get the services you need.

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You just might be the expert in the room Be prepared to assist professionals who may have limited experience with your loved one’s exact needs. Your family doctor may be wonderful, but he or she may have little or no experience writing prescriptions for wheelchairs or special software for a learning disability. Share your expertise by discussing your loved one’s needs, giving as much detail as possible about what you are looking for. You may want to speak with agencies about equipment and service evaluations before approaching a doctor for authorization. Your local Center for Independent Living (CIL) or people you already know who have the same disability as your child and have successfully advocated for their own needs may have some helpful ideas. These people may also be able to connect you with professionals who have experience with exactly what you are looking for.

Stay on people’s good side Find the line between advocacy and aggression. Communicating effectively with professionals and learning how to navigate the system are important skills for any caregiver to learn and develop. These can be acquired through the help from other caregivers or caregiver coalitions or other advocacy groups. A successful advocate lets the system work for them. You want to stay on top of things, but don’t turn into a pest and make it harder for the professionals to do their jobs. Smile when you are talking to people…even if you are on the phone, your smile will come through in your tone of voice. Professionals are people too, and words like “please” and “thank you” will go a long way toward developing a strong working relationship.

Start early and be prepared to wait. Most people notice a definite change when stepping out of the entitlement-based world and into the eligibility-based world. Don’t worry. There are ways to make this work in your favor. Sometimes, people who are the best at standing up and advocating for themselves are the first to get the assistance they are looking for. So, if you are a good advocate, this type of system could work in your favor.

Keep accurate notes Record keeping may seem like a hassle at first, but saves a great deal of time down the road. Whenever you have a conversation with any professional, it’s a good idea to write it down. Some caregivers keep a notebook just for this purpose. Include all contact names, phone numbers, dates of calls, and a quick summary of the discussion.

Know what you need; do your research When advocating for equipment or services, make sure to collect all the details and product information ahead of time. If insurance is being used for payment, ask both the insurance company and the equipment provider if there are pre-set guidelines or other information that will be needed. This will save a lot of time later on in the process.

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Understand your insurance benefits Do not be afraid to ask questions when you are unsure of something about your insurance. Review the terms of each program and policy. Know when referrals or pre-certifications are necessary. Pay careful attention to co-pays, service limits, and equipment ownership/replacement responsibilities. These issues are especially important for parents with children who will outgrow equipment, or those whose functional abilities may change with time. Remember, you can always appeal an insurance company’s decision in the event of a denial, no matter what type of plan you are on.

Systems Advocacy Systems advocacy is a process by which organized groups or individuals come together to advocate for positive change to programs, services, and legislation. Advocacy for changes in policy or service delivery may be most effective when there is a united voice that speaks on behalf of the issue. There are numerous coalitions that advocate regarding specific issues, policies, disabilities and diseases on local, state and national levels. Below are a few local organizations. For a more comprehensive listing check the New Jersey Resources Guide at www.state.nj.us/humanservices/dds.

Centers for Independent Living (CIL's) These are private, not-for-profit organizations that promote systems advocacy. They also work with people with all disabilities to advance their independence. Each CIL promotes the Independent Living movement which seeks to change community attitudes and beliefs which perpetuate dependence. Independent Living is a philosophy which states that people with disabilities should have the same civil rights, choices, and control as do people without disabilities. DAWN is the Center for Independent Living serving Morris, Sussex and Warren counties. For more information:

 DAWN Center for Independent Living 973-625-1940; 1-888-383-DAWN www.dawncil.org

Family Support Organization of Morris and Sussex Counties The Family Support Organization of Morris and Sussex Counties is a family-run organization devoted to the needs of families whose children have emotional and behavioral challenges. Families receive peer support, information and referral services, education and advocacy within a compassionate and culturally sensitive environment. Assistance is also offered in helping caretakers navigate the complex public children’s mental health system in New Jersey  973-770-2700 www.fso-ms.org

RFSPC (Regional Family Support Planning Councils) These groups of parents assist and advise the Division of Developmental Disabilities as to how resources can best meet the needs of families and individuals living in your region. For more information:  NJ Council on Developmental Disabilities 609-222-3745 TDD 609-777-3238 www.njddc.org/familysupport.htm © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Developmental Disabilities Councils (DDC) According to federal law, their mission is to engage in advocacy, capacity building, and systemic change that contribute to a coordinated, consumer and family-centered, consumer and familydirected comprehensive system that includes needed community services, individualized supports, and other forms of assistance that promote self-determination for individuals with developmental disabilities and their families.

 www.njddc.org (For publications, click on “Publications) Monday Morning project (under DDC) is a grass-roots organization of advocates concerned with the issues affecting the disability community. Made up of county-based networks, Monday Morning is the voice of people with disabilities speaking out for justice, equal opportunities, improved public access and a greater voice in community planning

 www.njddc.org (Click on “Monday Morning”)

Caregivers Coalition of Morris County A United Way of Morris County Initiative The Coalition’s work on behalf of caregivers includes advocacy at the local, state, and national level. It is an advocate voice on your behalf. Your ideas and experiences could help direct the Coalition’s advocacy efforts. Please contact the Coalition if you are interested in joining its advocacy efforts.



Caregivers Coalition of Morris County 973-993-1160, x139 www.LiveUnitedMorris.org

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14. Life Transitions for Caregivers of Loved Ones with a Disability Stages of Caregiving In caring for your loved one you may, over time, experience different stages of caregiving. Coping with these changing stages of caregiving will require you to manage stress, perhaps develop new skills, all while maintaining a level of flexibility as you adapt to your loved one’s changing needs. Again, most caregivers climb a steep learning curve, as they become a medical connoisseur, system navigator extraordinaire, assertive advocate, financial guru, and legal expert all in one. For many, this must be done while balancing a full or part-time job, children, grandchildren, spouse, and other relationships and responsibilities, while trying to maintain their own physical health, mental health, social life, and overall well-being.

You Are Not Alone We don’t need to tell you that caregiving can be exhausting, even frustrating at times. For any caregiver, the stress of providing care can generate a range of emotions on any given day frustration, sadness, worry, even anger. So, do not try to do the entire job all alone! A strong network of friends, family, and service providers can help you, and keep emotions and exhaustion from becoming overwhelming. Ask for help, whenever you need it. Again, remember, it is important that you do not take on all your caregiving responsibilities in isolation. Through organizations noted in this support guide, you can find the resources and people you need to take care of yourself – taking care of yourself means that you will be better able to take care of your family member or friend. No matter what each stage of caregiving brings, it will always help to reach out to find the information and support you need to provide the best care possible, for your loved and for YOU.

Your Changing Role Throughout your caregiving journey, you may notice that your loved one requires different levels of care. Having to assume responsibilities that your loved one was used to doing independently can generate a range of emotions for you both, from frustration to sadness, even anger and grief. Identifying the issues that are associated with the illness, disease or disability will help you cope with the role transition that you are experiencing, as well as the changing nature of your relationship with your family member or friend. During this time, flexibility is the key. You will need to develop stress and time management skills that are necessary to cope with changes and increased demands that will occur over time. If you must take on more and more daily tasks related to caregiving, it will become increasingly important to take advantage of resources in the community and whatever services you and/or your loved one are eligible for.

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If and when you are called upon to take on a new level of care, give yourself time to adjust. Do not expect your life to return to normal right away. The social structure you knew, the friends you had, and activities you did may have to change as you take on your caregiving role. Give yourself time to develop and establish new daily routines. And, remember that each caregiving situation is unique – no two caregivers will experience the same circumstances or transitions. There is no single way of caring. With the right information, resources, and support you will be able to care for your loved one and yourself in the best way possible. Importantly, always remember that your caregiving is a gift – one of the greatest gifts you can ever give to the one you care for; a gift to be proud of and to cherish.

Based on material from CHATS - Community Home Assistance to Seniors, Ontario, and Aetna Intilihealh

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Section 3 Caregiving for a Loved One with Mental Illness

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Caregiving for a Loved One with Mental Illness Chapter 1

Introduction ………………………………………. 123

Chapter 2

Becoming a Caregiver for a Loved One with Mental Illness …........................................... 124

Chapter 3

Where to Begin: Finding the Support You Need… 127

Chapter 4

Caregiver Education Programs………...…… …… 132

Chapter 5

Caregiver Support…………………….…………….. 133

Chapter 6

Case Management…………….…………………… 137

Chapter 7

Benefit Programs & Financial Matters…………….. 140

Chapter 8

Legal Matters………………………………………... 152

Chapter 9

Day Treatment Programs………………………….. 158

Chapter 10 Employment & Volunteering……………………… 159 Chapter 11 Housing for Loved Ones with Mental Illness…… 161 Chapter 12 Transportation Information…………………………. 165 Chapter 13 Advocacy…………………………………………….. 168 Chapter 14 Life Transitions for Caregivers………….…………. 171 Appendix A National Websites on Caregiving………………… 173 Appendix B Disease/Disability-Specific Websites …………… 175 Appendix C Glossary of Legal Terms………………………….. 178

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1. Introduction to Pathways for Caregivers of a Loved One With Mental Illness We are glad that Pathways for Caregivers has found its way to you and hope you find it a helpful tool. Pathways is intended to be a source of information, advice, and ideas about how to get the support you need on your caregiving journey. Whether you are planning ahead for a loved one with mental illness, or find yourself in the middle of a crisis with decisions that need to be made quickly, information and resources can often be confusing and difficult to access. While you will find some organizations and agencies referenced, Pathways is not meant to be a complete list of all the County agencies and services that are available. 2-1-1 First Call for Help, the Morris County Department of Human Services’ Mental Health Administrator and the Mental Health Association of Morris County are your best bets for that. You will find them referenced throughout this guide. Rather, Pathways IS designed as a “roadmap” to help put you on the right track for your caregiving situation, and to support you along the way. Pathways for Caregivers was created by members of the Caregivers Coalition of Morris County. This means it was created BY caregivers FOR caregivers - created by caregivers, for you. As you read this guide, please keep in mind that it is intended to help caregivers who may be facing a wide range of situations. While planning ahead is important, we recommend that you try to focus on the caregiving stage that you are currently in, and not look too far into the future, as sometimes trying to look too far down the road can be a bit overwhelming. The most important thing to know is that, as you take on caregiving responsibilities, you need not caregive in isolation. Reach out. Ask for help. There are resources, organizations, and fellow caregivers who can provide you with the support you need.

If your loved one is over age 60, please also see the Caregiving for an Aging Loved One section of this guide for additional information and resources.

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2. Becoming a Caregiver for a Loved One With Mental Illness The onset of a mental illness in any family is often, and understandably, a time of turmoil. Most families report feeling ill prepared to deal with the initial onset of a major mental illness in a loved one. Families generally have little prior knowledge of mental illness, and find that they not only have to deal with the upheaval that often accompanies the disease, but that many of the natural supports that they have come to rely on in difficult times are no longer available to them in their time of need. This is often due to a lack of awareness, and often stigma, about mental illness among typical supports such as extended family members, friends, or co-workers. The toll that mental illness takes on families is often unspoken. Many who care for a loved one with a mental illness often neglect their own health and care, focusing almost exclusively on the needs of those for whom they support. In decades past, mental health was a phrase that referred only to mental illnesses; mental illnesses were shrouded in such shame and stigma that many people neglected emerging mental health issues, in others, and even in themselves. Today, much has changed. A “family consumer” movement that started in the early 1980s has raised awareness of many issues. New research has provided tremendous knowledge about the brain, new and effective medications have come to market, and mental health services have improved significantly. Yet, much remains to be done. People with mental illnesses still face great stigma and discrimination. Many people are not sure how to judge when a family member or loved one needs professional help for mental health problems. There are some behaviors - especially if they persist, become severe or significantly impact functioning - that may be signs of trouble: • • • • • • • • • • • • • • •

Persistent sadness or anxiety Feelings of hopelessness, pessimism Feelings of guilt, worthlessness, helplessness Loss of interest or pleasure in hobbies and activities that were once enjoyed, including sex Decreased energy, fatigue Difficulty concentrating, remembering, making decisions Growing inability to cope with daily problems or activities Insomnia, early-morning awakening, or oversleeping Appetite and/or weight-loss overeating and weight gain Persistent physical symptoms that do not respond to treatment, such as headaches, digestive disorders, and chronic pain Restlessness, irritability Mood swings Confused thinking Delusions or hallucinations Thoughts of death or suicide attempts

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Any of these symptoms, if persistent for any length of time, may suggest a need for professional help. Fortunately, with early identification and treatment, problems causing such behavior can often be effectively treated. If you support your loved one in any way on a regular basis, from driving to appointments or shopping, to managing his or her finances, to discussing medical issues with his or her doctor, to providing emotional support, you are considered a caregiver. Whether your loved one lives with you, in their own home, in a facility, or even a long distance away, if you do any of these things on a regular basis, you are a caregiver...and we hope this guide will be of help to you. The following is a list of activities that, if done on behalf of another, are traditionally considered “caregiving”: • • • • • •

Occasional or daily help at home (chores, meals, transportation, etc.) Financial and/or business assistance (balancing checkbooks, paying bills, etc.) Emotional support Daily supervision and/or personal care Arrangements for doctors’ appointments (making calls, transportation, explanations or translations, etc.) Medication management

While you may do just a few things for your loved one at the moment, it is a good idea to be aware of, and even track, changes that may occur.

Stages of Caregiving In caring for your loved one you may, over time, experience different stages of caregiving. Coping with these changing stages will require you to manage stress, perhaps develop new skills, all while maintaining a level of flexibility as you adapt to your loved one’s changing needs. But, in reality, how many caregivers are given the opportunity to fully prepare? Realistically, most caregivers climb a steep learning curve, as they become a medical connoisseur, system navigator extraordinaire, assertive advocate, financial guru, and legal expert all in one. For many, this must be done while balancing a full or part-time job, children, grandchildren, spouse, and other relationships and responsibilities, while trying to maintain their own physical health, mental health, social life, and overall well-being. Life is a journey – each of us can only take one step at a time. Caregiving for a loved one with mental illness is no different.

Caregiving for a parent, spouse, domestic partner, relative, or close friend with mental illness presents a variety of difficult challenges. These challenges can arrive in an instant, as with a sudden crisis, or can develop over time, through a series of small, but sometimes disconcerting, mishaps and warning signs. You may be the only person to step in, or you may be part of a larger network of family and friends willing to share caregiving duties. Whatever the caregiving situation, you may find yourself unsure of which steps to take. And, of course, throughout any caregiving journey, those steps will change.

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You Are Not Alone We don’t need to tell you that caregiving can be exhausting, even frustrating at times. For any caregiver, the stress of providing care can generate a range of emotions on any given day frustration, sadness, worry, even anger. So, do not try to do the entire job all alone! A strong network of friends, family, and service providers can help you keep the important work you are doing as a caregiver from becoming overwhelming. Ask for help, whenever you need it. Again, remember, it is important that you do not take on all your caregiving responsibilities in isolation. Through organizations noted in this support guide, you can find the resources and people you need to take care of yourself – taking care of yourself means that you will be better able to take care of your family member or friend. No matter what each stage of caregiving brings, it will always help to reach out to find the information and support you need to provide the best care possible, for your loved and for YOU.

Your Changing Role Throughout your caregiving journey, you may notice that there are times when your loved one requires an increasing amount of help. Having to assume responsibilities that your loved one was used to doing independently can generate a range of emotions for you both. Identifying the issues that are associated with the illness will help you cope with the role transition that you are experiencing, as well as the changing nature of your relationship with your family member or friend. In most caregiving situations, flexibility is the key. You will need to develop stress and time management skills that are necessary to cope with changes and increased demands that may occur at times. If you must take on more and more daily tasks related to caregiving, it will become increasingly important to take advantage of resources in the community and whatever services you and/or your loved one are eligible for. If and when you are called upon to take on a new level of care, give yourself time to adjust. Do not expect your life to return to normal right away. The social structure you knew, the friends you had, and activities you did may have to change as you take on your caregiving role. Give yourself time to develop and establish new daily routines. And, remember that each caregiving situation is unique – no two caregivers will experience the same circumstances or transitions. There is no single way of caring. With the right information, resources, and support you will be able to care for your loved one and yourself in the best way possible.

Based on material from CHATS - Community Home Assistance to Seniors, Ontario, and Aetna Intilihealth

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3. Where to Begin: Finding the Support You Need Where to begin often depends on WHY you are beginning to consider services and support for a loved one. Whether you are just starting to be concerned about a loved one’s mental health, or you have already been caring for someone with mental health issues, you may not have yet accessed the network of services available to you. The following are some helpful initial contacts for you to consider in Morris County.

Non-Crisis Situations If your loved one is developing symptoms which have you concerned, there are “information and referral” agencies that will be able to direct you to the health and human services your loved one will need. They are staffed by specialists trained to assess your loved one’s needs, determine which provider(s) would be most beneficial, and direct you to them.

If Your Loved One is under 18 years old: Children and youth between the ages of 5 and 17 living in the State of New Jersey and who have emotional or behavioral disturbances are eligible for services through the Division of Child Behavioral Health Services (DCBHS). Special consideration will be given to children under 5. Young adults ages 18 to 21 are eligible if the youth is actively involved with Child Welfare, Child Behavioral Health or Juvenile Justice at the time of their 18th birthday. DCBHS offers an information and referral Access Line. Information about the DCBHS, types of services available, benefit information for DCBHS enrollees, and community resources are available. Families may also find assistance linking to providers and services. A customer service representative is available to assist callers from 8 am - 10 pm Monday through Friday. Calls received outside of that time frame will be returned the next business day. PerformCare serves as the statewide contracted system administrator for DCBHS. They provide 24/7 customer service/call center support, coordinate access to services for children, youth and young adults, facilitate access to specialized services, and implement a complaints, resolution and appeals process.

 NJ Department of Children and Families, DCBHS/PerformCare Information and Referral Access Line 877-652-7624 (TDD: 866-896-6975) www.performcare.org or www.state.nj.us/dcf If Your Loved One is 18 years old or older: 2-1-1 First Call for Help 2-1-1 First Call for Help offers both confidential telephone support to people in crisis and personalized information and referrals to those needing assistance. 2-1-1 now operates statewide, connecting people with the resources they need to solve common life problems. It is staffed 24/7 and can be accessed by dialing 2-1-1.

 Dial 2-1-1, or 1-800-435-7555 www.NJ211.org © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Morris County Dept. of Human Services, Mental Health Administrator The Administrator oversees the delivery of publicly funded mental health services and addresses the questions or concerns of individuals with mental illness and their loved ones regarding the Morris County mental health system.

 973-285-6852 Mental Health Association of Morris County This organization provides information and referrals, public education, and support services for individuals with mental illness and their caregivers.

 973-334-3496 www.mhamorris.org New Jersey Mental Health Cares This is a statewide information and referral service for all types of mental health services.

 1-866-202-4357 www.njmentalhealthcares.org

Crisis/Emergency Situations - What to Do The reality of mental illness is that there may be times when a crisis occurs. You can best help your loved one by knowing the options available for him or her in any given situation. If your loved one becomes violent, out of control, exhibits threatening behavior toward others or him or herself or tries to commit suicide, you should immediately call 911. Often 911 responders are the best-equipped, most available resource, especially when there is a strong possibility that the person may harm him or herself, or others. If you feel the situation does NOT warrant a 911 call, these resources offer crisis response:

If Your Loved One is under 18 years old: The Division of Child Behavioral Health Services (DCBHS) offers Mobile Response and Stabilization Services (MRSS) for emergencies and potential crisis. This service is available twenty-four hours a day, seven days a week (24/7). Clinically trained staff assist callers in getting the services needed as quickly as possible. MRSS helps keep your child and family safe in an emotional or behavioral crisis, and works to keep your child in their current living situation. The Mobile Response Team will work with your family in your home or community to assess and address the crisis. They will work with you and your child to stabilize the situation and can continue to work with you to develop and manage a plan to help keep your child safely at home. PerformCare serves as the statewide contracted system administrator for DCBHS.

 NJ Department of Children and Families, DCBHS/PerformCare Information and Referral Access Line 877-652-7624 (TDD: 866-896-6975) www.performcare.org © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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If Your Loved One is 18 years old or older: You may choose to contact any of the three local hospitals in Morris County below which offer 24/7 Psychiatric Emergency Services (PES), either on site or by hotline. Trained professionals will provide assessment, intervention help, referral and/or hospitalization, either voluntary or involuntary (see Chapter 8, Legal Matters for additional information.)

 Morristown Memorial Hospital, Morristown Crisis Intervention Services 973-540-0100 www.atlantichealth.org/Morristown/Patient+Care+Services/Behavioral+Health/ 24-hour+Crisis+Intervention  Chilton Memorial Hospital, Pompton Plains Crisis Intervention Services 973-831-5078 www.chiltonmemorial.org/emergencydept.shtml#BehavioralHealthServices  Saint Clare’s Hospital, Denville Psychiatric Emergency Service Saint Clare’s Hospital also has a mobile screening unit available to Morris County residents that provides psychiatric screenings in the community when deemed necessary.

973-625-0280; Screening: 973-625-6150 www.saintclares.org/services/services_ak/behavioral/acute/AcuteCare.asp  Saint Clare’s Health System, Boonton Children’s Crisis Intervention Services 973-316-1982 www.saintclares.org/services/services_ak/behavioral/acute/AcuteCare.asp  Saint Clare’s Health System, Denville The Wellness and Recovery Center 973-625-0096 or 1-888-476-2660 The Wellness and Recovery Center at Saint Clare's Health System offers a comprehensive array of services to assist individuals through crisis situations and difficult life circumstances by offering support, education and linkage to community resources. The recovery-oriented services and supports offered include crisis intervention, supportive counseling, case management, medication prescription and counseling, peer support, psycho-education and family intervention to individuals 18 years of age or older who reside in Morris County and are in need of supportive crisis intervention.

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The Helping Professionals: Who they are and what they do What follows is a brief explanation of the different professionals who help individuals with mental illness. It is important to remember that finding the right professional can be an ongoing process. Always confirm the credentials of a therapist through the appropriate professional association.

Psychiatrists A psychiatrist is a medical doctor who specializes in psychiatric disorders, is licensed to practice medicine, and has completed 3 years of specialty training. A certified psychiatrist has, in addition, practiced for 2 years and passed the examinations of the American Board of Psychiatry and Neurology. Psychiatrists can evaluate and diagnose all types of mental disorders, carry out biomedical treatments and psychotherapy, and work with psychological problems associated with medical disorders. Both psychiatrists and Advanced Practice Nurses can prescribe drugs and medical therapies. Child psychiatrists specialize in working with children; geriatric psychiatrists concentrate on helping the aged.

Psychologists The field of psychology includes many specialties - clinical treatment, testing, community organization, industrial relations, laboratory research, and many more. Psychologists who conduct psychotherapy and work with individuals, groups, or families to resolve problems generally are called clinical psychologists, counseling psychologists, or school psychologists. They work in many settings - for example, mental health centers, hospitals and clinics, schools, employee assistance programs, and private practice. In most States, a licensed psychologist has completed a doctoral degree from a program with specialized training and experience requirements and has successfully completed a professional licensure examination.

Psychiatric Nurses Psychiatric nursing is a specialized area of professional nursing practice that is concerned with prevention, treatment, and rehabilitation of mental health-related problems. These nurses are registered professional nurses who have advanced academic degrees at the master's degree level or above. They conduct individual, family, and group therapy and also work in mental health consultation, education, and administration.

Advanced Practice Nurses Advanced Practice Nurses are master’s prepared registered nurses with advanced training and licensing who provide primary and preventive health care including mental health and psychiatric services. Some APNs have their own practices, but most work in collaboration with a physician. Advanced Practice Nurses can prescribe medications, provide psychotherapy to individuals and groups, and order and evaluate laboratory, x-ray and other diagnostic tests. They work in hospital settings, private practice, mental health centers, schools and community medical centers.

Social Workers Individual, family and group therapy, diagnosis, referral, and consultation are some of the tasks that social workers are trained to perform. Social Workers have a Bachelor’s Degree, a Master’s Degree, or a Doctoral Degree and must take an exam to be licensed to practice social work. Master’s level Social Workers have completed field-placement programs designed to provide hands on experiences in several areas, including assessment and treatment of mental illness, psychotherapy techniques, community organization, administration, and consultation.

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Do not hesitate to ask your provider for his or her credentials. The type and range of services provided by nurses, social workers, and counselors vary by educational degree earned and type of licensure.

Licensed Professional Counselors (LPC) LPCs have a master’s degree in counseling, psychology, or a similar discipline. They may provide services that include diagnosis and counseling (individual, family/group or both). They must take an exam to be licensed to practice and may also be certified by the National Academy of Certified Clinical Mental Health Counselors.

Case Managers and Outreach Workers These individuals assist persons with severe and persistent mental illnesses, including individuals with mental illness who are also homeless, to help them obtain the services they need to live in the community. Most persons who have chronic mental illnesses need medical care, social services, and assistance from a variety of agencies, including those dealing with housing, Social Security, vocational rehabilitation, and mental health. Because such services are uncoordinated in many areas, case managers provide a critical function to monitor a person's needs and assure that appropriate agencies are involved. In many instances, they also act as advocates for the person who is ill. Case managers can be nurses, social workers, or mental health workers and can be associated with mental health centers, psychosocial rehabilitation programs, or other agencies.

Counseling/Short Term Treatment Outpatient care Outpatient care is when an individual or family goes into a professional mental health office for treatment that has been set up on a regular appointment basis, most likely weekly or bi-weekly. Individual, family, and group counseling is provided according to the individual or family’s need. Psychiatric services by psychiatrists and/or psychiatric nurses, such as evaluations and medication monitoring, are also usually available.

Additional websites of national organizations with information on caregiving can be found in Appendix A.

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4. Caregiver Education Programs If your loved one with a mental illness attends school, please see Caregiving for a Loved One with a Disability, Chapter 4 for education information.

Caregivers Coalition of Morris County, a United Way of Morris County Initiative The Coalition’s Lunch & Learn Education Series offers programs on various aspects of caregiving, including caring for someone with mental illness. The programs are presented by professionals in the field, and may be scheduled by any local group, including area corporations, faith-based organizations, civic groups, etc. Contact the Coalition Coordinator for an updated list of topics, or to schedule a workshop.  973-993-1160, ext. 139 www.LiveUnitedMorris.org

Mental Health Association of Morris County This organization provides public education for individuals with mental illness and their caregivers.

 973-334-3496 www.mhamorris.org Intensive Family Support Services (IFSS) Saint Clare’s Hospital, Denville NJ IFSS is a program that focuses attention on the family system. Support and education are provided to families or significant caregivers of people with serious mental illness. The services offered include: psycho-education, family consultation, support groups, advocacy, referral/service linkage, and respite.



973-615-7095 www.saintclares.org/services/services_ak/behavioral/support/IntensiveFamilySupport Services.asp

National Alliance on Mental Illness (NAMI) New Jersey Morris County Affiliate NAMI New Jersey provides education, support and systems advocacy to empower families and persons with mental illness. Affiliate self-help and grassroots advocacy groups located in each county offer emotional support, information and advice about treatment and community resources.



908-879-5687 www.naminj.org/affiliates/morris.html

Educating yourself about the disease or disability affecting your loved one is important. There are many disease/disability-specific websites available. Make sure the information you access is from a recognized and trustworthy organization. Some recommended websites can be found in Appendix B.

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5. Caregiver Support It is important for caregivers to recognize that they are not alone, to learn that caregiving is more than a one person job, and to see that taking care of themselves is vital to their one’s wellbeing. – The National Family Caregivers Association

Taking care of yourself. Scheduling (and keeping!) your own doctors’ appointments. Asking for help. Taking a break. These are vital steps you can take as a caregiver to keep yourself healthy. Studies show that caregivers are at a greater risk for health problems. As a caregiver, your health - both physical and emotional - is as important as the health of the loved one for whom you provide care.

STOP! STOP! Self-Care Sometimes, as caregivers, we are so busy giving care that we forget or neglect to take care of ourselves. As caregivers, it is important to acknowledge that stress is a normal, sometimes difficult but definitely manageable, part of our caregiving. Stress can manifest itself in both a physical and emotional way; it is vital to find an outlet to relieve it! You may even need to give yourself permission to take care of yourself. That is fine, and good, and necessary! Self-care/stress management can be achieved in many ways. General attention to daily activities like healthy eating, exercising, sleeping, and talking with friends, is vital. Even for the busiest of caregivers, mini-breaks can be lifesavers. Go to a quiet room or step outdoors and just breathe for ten minutes; clear your mind and focus only on your breath. Write in a journal. Say a positive affirmation. Light a candle. Listen to music. Call a good friend. You might consider attending a support group. Support groups are organized groups of individuals who share a common experience and provide each other with various types of help, i.e., information, resources, and emotional support. Support groups can be led by a professional facilitator or be self-help groups. Other ideas may be helpful. These require a range of time and/or cost. Sometimes referred to as complementary or alternative therapies, there are options for everyone: o o o

Aromatherapy uses liquid plant oils and other aromatic compounds to improve one’s mood and health. Art therapy is based on the belief that the creative process is both healing and life enhancing. It uses art materials and projects as therapeutic tools. Chiropractic is a health care discipline that believes that re-alignment of the spine will alleviate any nerve interference that directly affects how stress manifests itself in the body. This can be especially helpful If you are physically moving your loved one from

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o o o o o

place to place, which takes a toll on your body; a chiropractor can teach proper lifting techniques that best protect your back. Massage therapy encompasses several disciplines that utilize body techniques to promote healing and health. Music therapy is the systematic use of music to maintain and improve one’s emotional stability. Reiki is a system of subtle energy healing using the laying on of hands and distinct healing techniques, designed to relax, de-stress, and heal. T’ai Chi is a slow gentle body movement, while breathing deeply and meditating, that helps the flow of body energy. The gentle flowing motion reduces stress and improves health. Yoga is a physical and mental discipline. While it includes physical exercise, it is also a lifestyle practice, the goal of which is the union of the mind, body and spirit. There are many different styles of yoga. You may need to explore a number of styles before finding the one that is right for you.

These are examples of some types of therapies that can help you manage your stress, as well as reduce pain, anger, anxiety, and even depression. There are others. Choose one or more that is right for you. Whether relaxing muscles and reducing inflammations, or improving strength, balance and mobility, or getting a more restful sleep...these are all critical ingredients of self care that will help you protect your own emotional and physical health as you continue your caregiving journey.

Support for Caregivers Family Support Organization of Morris and Sussex Counties The Family Support Organization of Morris and Sussex Counties is a family-run organization devoted to the needs of families whose children have emotional and behavioral challenges. Families receive peer support, information and referral services, education and advocacy within a compassionate and culturally sensitive environment. Assistance is also offered in helping caretakers navigate the complex public children’s mental health system in New Jersey

 973-770-2700 (Morris County Office) www.fso-ms.org Intensive Family Support Services (IFSS) – Saint Clare’s Hospital, Denville NJ This Saint Clare’s program provides services and support groups for those who have an adult family member who has a mental illness:

 IFSS Support Groups Parent Support Groups Monthly support group for parents of an adult child with depression or bipolar illness.

973-625-7069 Family/Caregivers Support Groups Weekly support group for any family member or caregiver of an individual with mental illness.

973-625-7131 www.saintclares.org/services/services_ak/behavioral/support/IntensiveFamilySupport Services.asp © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Mental Health Association of Morris County: Concerned Families for the Mentally Ill Information and referral, phone support and bimonthly newsletter for families who have a loved one with mental illness.

 973-334-3496 www.mhamorris.org NewBridge Services Multi-Family Support Group meets on a weekly basis to provide information and support to families of adults with mental illness. The group is designed specifically for persons with mental illness and their loved ones to bring issues and questions about mental illness, wellness and recovery, and service options to people who share in the caregiving role.  973-686-2200 or 973-839-2520

www.newbridge.org Caregivers Coalition of Morris County, a United Way of Morris County Initiative Open to the public, and free to join, the Caregivers Coalition, a United Way of Morris County initiative, was founded to respond to the increasing needs of caregivers in the community. The goals of the Coalition are to strengthen services and resources to caregivers; improve access to information about caregiving and available services, and to identify and respond to gaps in services to caregivers. The Coalition also advocates for policies and legislation to improve the quality of life for caregivers, and provides educational programs to human service and health care providers, family caregivers, corporations, businesses, and the community. All are welcome. The Coalition’s Caregiver Advisory Panel (CAP) is a group of caregivers who are connected via phone and email; they share ideas, discuss issues, and support one another while advising the Coalition. These caregivers manage a range of caregiving situations. All caregivers are invited to join the CAP.

 Caregivers Coalition Coordinator 973-993-1160, ex. 139 www.LiveUnitedMorris.org

Caregiver Counseling/Psychotherapy There are many counseling and support services available in the County through local hospitals, human service agencies, and private practitioners

Mental Health Association of Morris County The Mental Health Association maintains a database of private practitioners and other mental health related resources.

 973-334-3496 www.mhamorris.org

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Morris County Division on Aging, Disabilities and Veterans The Morris County Division on Aging, Disabilities and Veterans services can offer listings of caregiver counseling programs. 

NJ EASE 1-800-564-4656

www.morrishumanservices.org/dvs/

Other Supports for Caregivers Self-Help Groups Self-help groups can be of great help to anyone coping with the demands of caregiving. There are many local, state, and national groups that can be found by contacting the NJ Self-Help Group Clearinghouse. If the Clearinghouse cannot direct you to an appropriate group that is already set up, they will help you join with others to start one.

 NJ Self-Help Group Clearinghouse 1-800-367-6274 www.njgroups.org/ Internet Support If you are unable to attend support groups in your community, check the following websites for information and support:

 CaringRoad.com www.caringroad.org  Johnson & Johnson, The Caregiver Initiative www.strengthforcaring.com  National Family Caregiving Association www.nfcacares.org  NJ Department of Health and Senior Services – Caregiver NJ www.state.nj.us/caregivernj/search/index.shtml

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6. Case Management for Loved Ones with Mental Illness Case managers work with individuals and their caregivers, developing individualized service plans tailored to help the person who is ill manage their illness and improve their quality of life. Case managers do a comprehensive assessment which might include any support persons with the consent of the individual living with mental illness. The case manager is an expert on available resources and helps arrange for and coordinate necessary services. The case manager ensures that services continue to meet the needs over a period of time and reassesses for changes that may require additional services or readjustments in the care plan. He or she acts as an advocate for the person with mental illness.

Integrated Case Management Services (ICMS) The purpose of ICMS is to assist adults with serious and persistent mental illness to live successfully in the community after discharge from a psychiatric hospital. Case management remains available to every individual discharged from a psychiatric hospital for at least 18 months after their discharge. The program includes personalized outreach and linkage to available resources. ICMS, on a limited basis, provides case management services to individuals in the community who have not been hospitalized in state psychiatric hospitals but are in need of supportive services

 ICMS Mental Health Association of Morris County 973-334-3496, ext. 202 www.mhamorris.org Program of Assertive Community Treatment (PACT) Provides intensive in-home treatment for individuals who have been frequently hospitalized and who have continually dropped out of traditional community mental health services. PACT is available for as long as needed. The program involves a multi-disciplinary team approach including crisis intervention, daily medication monitoring and counseling available 24 hours a day, 7 days a week.

 PACT Saint Clare’s Behavioral Health 973-625-7138 or 1-800-565-7228 www.saintclares.org/services/services_ak/behavioral/CommunityBased.asp Supportive Living Program for Families Provides support for individuals discharged from Greystone Park Psychiatric Hospital to live with their families.

 Community Hope 973-463-9600 www.communityhope-nj.org

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Other Care Issues Abuse There are different kinds of abuse to be considered when talking about vulnerable adults or children: mistreatment and neglect. Mistreatment refers to any harmful conduct that is willfully inflicted on a vulnerable person. This includes physical, sexual, emotional, or financial abuse and exploitation. Signs of maltreatment and abuse include, but are not limited to, frequent visits to the emergency room, unexplained bruises or wounds, and depression, fear, or anxiety on the part of the person receiving care. Neglect can either be inflicted by another or self-imposed. Behavior is considered neglect when the responsible individual (i.e. caregiver, guardian, etc.) confines, isolates, or fails to provide essential services to prevent or lessen physical harm or mental anguish. Behaviors are considered self-neglect when an individual makes unnecessary or unsafe decisions or is taking part in unsafe activities. Signs and symptoms of neglect include things like malnutrition or dehydration, unsafe or unsanitary living conditions, missing or broken eyeglasses, hearing aids or dentures, and withholding of education or medical care, among others.

There are two specific points of contact if an individual is at risk of abuse. NJ Division of Youth and Family Services (DYFS) For children, the contact is through the New Jersey Division of Youth and Family Services (DYFS.) Anyone who has reasonable cause to believe that a child is being abused or neglected has a legal responsibility to report it.

 Child Abuse Hotline 1-800-792-8610 TTY/TDD for the deaf 1-800-835-5510 www.state.nj.us/dcf/divisions/dyfs/index.html

Adult Protective Services Adult Protective Services (APS) investigates reports of suspected abuse, neglect, and exploitation of “vulnerable” adults age 18 or older living in the community. A person is considered vulnerable if they are unable to act on their own behalf. Reports may be made by anyone. When a report is received, APS investigates. If the report is confirmed and the person is willing to accept help, APS will identify, and put in place, services that can help the vulnerable person. If you suspect a vulnerable adult is being abused or neglected, call:



Morris County Division on Aging, Disabilities and Veterans 973-326-7282 www.morrishumanservices.org/dvs/



After Business Hours: Call 911, or Sheriff’s Community Center: 973-285-2900

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The Prevention of Domestic Violence Act This Act provides protection from abuse to older adults and people with disabilities. The Act authorizes the issuance of a restraining order using the criminal code to define abuse. A caregiver or any person who has reasonable cause to believe that an older adult or person with a disability is subject to abuse, neglect, or exploitation should report such information to the local police.

Identification Having an official photo I.D. is a good idea for everyone. A non-driver photo ID can be acquired at age 17; six points of identification are required, just as for a driver’s license. For information:

 NJ Motor Vehicle Commission 609-292-6500 or 1-888-486-3339 www.state.nj.us/mvc At any age, a photo ID can be acquired at the Morris County Clerk’s Office. This ID can include medical alert information. For information:

 Morris County Clerk 973-285-6120 www.morriscountyclerk.org

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7. Benefit Programs & Financial Matters for Loved Ones with Mental Illness If your loved one is over age 60, please also see Caregiving for an Aging Loved One, Chapter 7 for additional information and resources.

Key Benefit Programs There are a wide range of programs directed toward older adults and people living with disabilities or mental illness. There are public programs on the National, State, and local levels. There are programs for which everyone over a specific age is eligible. There are programs for which a person must meet specific criteria, or live in a particular county. It is important to ensure that the loved one for whom you are caring apply for the programs for which he or she is eligible so that the assistance needed can be obtained. We will begin at the Federal level with the programs most important to the majority of people with disabilities. As a caregiver, you should review and write down key financial information, and keep it all in an easily accessible place. Be sure to let another family member know where this important information can be found.

Social Security Programs Social Security “Social Security” is the short name for the Title II Old Age, Survivors and Disability Insurance programs. It insures individuals and family members when the working family member retires, dies or becomes disabled. Workers qualify for benefits by paying Social Security taxes. As you work and pay taxes, you earn “credits” that count toward eligibility for future Social Security benefits. The major categories of benefits paid for through your Social Security taxes are:

1. Social Security Retirement Benefits Social Security is a federal program providing retirement income for those who have paid into the Social Security system. Note that the “normal” retirement age is being gradually increased from age 65 to age 67. You can get Social Security retirement benefits as early as age 62, but if you retire before your full retirement age, your benefits will be permanently reduced, based on your age. For example, if you retire at age 62 your benefit would be about 25% lower than what it would be if you waited until you reach full retirement age. NOTE: Sometimes health problems force people to retire early. If you cannot work because of health problems, you should consider applying for Social Security disability benefits. The amount of the disability benefit is the same as a full, unreduced retirement benefit. If you are receiving Social Security disability benefits when you reach full retirement age, those benefits will be converted to retirement benefits. © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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For caregivers, the important aspects of Social Security involve the application process, taxation, and appeals. Upon application, Social Security will check their records to determine the exact benefit rate. This rate is a function of age and amount of reportable earnings. Once receiving a benefit, the checks increase automatically with the cost of living. Benefit payments are made for the prior month on the second, third or fourth Wednesday, depending on your date of birth. If your loved one is not able to manage his or her own financial affairs, you or another trusted individual can be appointed as a “representative payee” to handle Social Security matters. The benefits are then made payable to the representative payee who must use the funds for the personal care and well-being of the beneficiary. Records and receipts must be kept to show how the money was spent or saved. This must be reported to the Social Security Administration. NOTE: some people have to pay federal income taxes on their Social Security benefits. This only happens if the beneficiary has other substantial income such as wages, interest, dividends and other taxable income that must be reported on the tax return in addition to Social Security benefits.

2. Social Security Disability Insurance (SSDI) Your loved one’s mental illness may qualify as a disability. The definition of disability under Social Security is different than other programs. Social Security pays only for total disability. No benefits are payable for partial disability or for short-term disability. Disability under Social Security is based on a person’s inability to work. An individual is considered disabled under Social Security rules if he/she cannot do work that he/she did before, and the individual cannot adjust to other work because of his or her medical condition(s). Benefits can be paid to people at any age who have enough Social Security credits and who have a severe physical or mental impairment that is expected to prevent them from doing “substantial” work for a year or more.

SSDI benefits for adults with a disability since childhood The SSDI program pays benefits to adults who have a disability that manifested itself before age 22. This SSDI benefit is paid on a parent’s Social Security earnings record. For an adult with a disability to become entitled to this “child” benefit, one of his or her parents: • •

Must be receiving Social Security retirement or disability benefits; or Must have died and have worked long enough under Social Security.

These benefits are also payable to an adult who received dependents benefits on a parent’s Social Security earnings record prior to age 18, if he or she is disabled at age 18. The disability decision is made using the disability rules for adults. SSDI disabled adult “child” benefits continue as long as the individual remains disabled. Your child does not need to have worked to get these benefits.

3. Social Security Family Benefits It is important for families to know that if their family member is eligible for retirement or disability benefits, other members of the family might receive benefits, too. If the spouse is at least 62 years of age, or under 62 but caring for a child under age 16, he or she may also be eligible for benefits. Unmarried children under age 18, or under age 19 but still in school, or 18 or older with a disability, may also be eligible.

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4. Social Security Survivor Benefits Certain members of your family may be eligible for benefits if their eligible family member dies. The family members who may be eligible include: a widow(er) age 60 or over, 50 or older if disabled or any age if caring for a child under age 16, unmarried children under age 18, under 19 but still in school or 18 or older with a disability. Parents may also be eligible if the deceased was their primary means of support. A special one-time payment of $255 may be made to the spouse or minor children. If divorced, an ex-spouse could be eligible for a widow(er)’s benefit.

Supplemental Security Income Benefits (SSI) Supplemental Security Income (“SSI”), often also referred to as “Social Security,” is a Federal income supplement program funded by general tax revenues and not Social Security taxes. It provides a minimum income to low income people who are 65 or older, blind, or disabled. Where Social Security is an insurance program requiring “paying into system,” SSI is a needs based program. The basic SSI benefit is a monthly cash payment. Living arrangements or monetary assistance from friends or family may reduce benefits. The monthly benefit rate varies depending on the state you live in. Most people who get SSI also qualify for Medicaid, food stamps, and other assistance. It is important that the caregiver or recipient monitor SSI payments; they should report any change in a situation, any overpayment, underpayment, etc. If an underpayment is discovered, you are entitled to retroactive benefits. While there is no time limit to reporting an underpayment, appeals of agency decisions must be filed within 60 days of the date of the decision.

SSI rules for children under the age of 18 If your loved one is under the age of 18, please see Caregiving for a Loved One with a Disability, Chapter 7, for information relating to Social Security benefits for minors. For more information on any of these benefits, or to apply for Social Security or SSI payments, visit your local Social Security office, or call:

 Social Security Administration 1-800-772-1213 www.ssa.gov

Medicare & Medicaid Programs Medicare Medicare is a federal program of health insurance. It pays for acute illness situations. It is not designed to provide benefits for long term or custodial care. To be eligible, one must be 65 years of age and have paid into the Social Security system. If the person you care for is 65 or older and is already receiving Social Security benefits, he or she will be enrolled automatically in Medicare. Individuals receiving Social Security Disability benefits will get Medicare coverage automatically after they have received disability benefits for two years. If he or she is not already receiving Social Security, you will need to call the Social Security Administration.

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Medicare Part A Part A is primarily hospital insurance. Following payment of a deductible, Medicare Part A will pay patient expenses for 60 days of hospitalization. After 60 days, the patient is required to pay a greater amount of the hospitalization cost. Part A will help pay, in certain circumstances, for stays in skilled nursing facilities, home health care, and hospice care. Most people do not have to pay a monthly premium for Part A.

Medicare Part B Part B pays for doctors' services, outpatient care, outpatient physical and speech therapy, some home health care, ambulance services, and some medical equipment and supplies. Part B is optional and requires a monthly premium. There is also an annual deductible that must be met before Medicare starts to pay its share.

Medicare Part C Medicare Part C offers Medicare Advantage Plans that combine your Medicare Part A (Hospital) and Part B (Medical). Private insurance companies approved by Medicare provide this coverage. In some cases the premiums and/or co-pays can be lower than in the original Medicare plans. Medicare Advantage Plans offer a number of types of plans including Preferred Provider Organization (PPO) Plans or Health Maintenance Organization (HMO) Plans. These plans coordinate your loved one’s medical care with some plans having stricter network and referral requirements than others. Many of the plans include Medicare Part D (Prescription Drug coverage). It is important that you read the plan information carefully to ensure you are selecting the right plan for you or your loved one.

Medicare Prescription Drug Plan Part D Medicare offers prescription drug coverage for everyone with Medicare. This is called “Part D.” This coverage may help lower prescription drug costs and help protect against higher costs in the future. It can give you greater access to drugs that you can use to prevent complications of diseases and stay well. These plans are run by insurance companies and other private companies approved by Medicare. Part D is optional. Cost: If you join a Medicare drug plan, you usually pay a monthly premium. If you decide not to enroll in a Medicare drug plan when you are first eligible, you may pay a penalty if you choose to join later. If you have limited income and resources, you might qualify for extra help paying your Part D costs. This is only a general overview of the system. Individual circumstances and situations will vary. For more information, or a comprehensive look at the details of this program:

 Centers for Medicare & Medicaid Services (CMS) 1-800-MEDICARE www.medicare.gov Medigap Medigap is also called "supplemental insurance." Generally, a person must have Medicare Part A and Part B to buy a Medigap policy. There is a monthly premium for Medicare Part B. In addition, a premium must be paid to the Medigap insurance company. A Medigap policy is health insurance sold by private insurance companies to fill the “gaps” in original Medicare Plan coverage. Medigap policies help pay some of the health care costs that the original Medicare Plan doesn’t cover. If your loved one is in the original Medicare Plan and has a Medigap policy, then Medicare and your Medigap policy will pay both their shares of covered health care costs.

 www.medicare.gov/medigap/default.asp © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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The State Health Insurance Assistance Program (SHIP) SHIP is a statewide program that provides free, objective information and assistance about Medicare, Medigap, and other Medicare insurance plans. Trained volunteer counselors are available to help you make informed choices. To contact counselors:

 State Health Insurance Program (SHIP) 1-800-792-8820 www.state.nj.us/health/senior/ship.shtml  NORWESCAP (Local Office for SHIP) 973-989-5773

Medicaid Medicaid is a needs-based health insurance available through Social Security Income (SSI), Division of Youth & Family Services (DYFS), Department of Developmental Disabilities (DDD), municipal welfare and the Office of Temporary Assistance (OTA).

Medicaid Home & Community - Based Waivers The loved one you care for may be over age 65 or have developed medical conditions that qualify as a disability. In addition to health insurance, Medicaid provides unique services to persons with a variety of disabilities through home and community-based waiver programs. The following is a list of some of the waiver programs available. You will need to contact each individual program to determine eligibility. As there are a number of waiver programs available in addition to the ones listed here, you should contact the Office of Temporary Assistance to determine if your loved one’s situation qualifies for a Medicaid waiver program.

 Morris County Office of Temporary Assistance (Medicaid Unit) 973-326-7878 www.morrishumanservices.org/hs/ AIDS Community Care Alternatives Program (“ACCAP”) This waiver is for those of any age with AIDS (Acquired Immunodeficiency Syndrome) and children up to age 13 who are HIV positive who are in need of institutional care and meet, at a minimum, the nursing facility level of care criteria. It provides full Medicaid benefits plus case management, private-duty nursing, medical day care, personal care assistant services, and hospice care. The purpose of the waiver is to help eligible individuals to remain in the community or to return to the community, rather than be cared for in a nursing facility or a hospital setting.

 Morris County Office of Temporary Assistance (Medicaid Unit) 973-326-7878 www.morrishumanservices.org/hs/ Community Resources for People with Disabilities (CRPD) Medicaid Waiver This waiver is for children and adults with disabilities and/or visual impairments, and provides all Medicaid State Plan services, as well as case management services. Services include personal care assistant, home health, medications, durable medical equipment, and physician services. New Jersey has recently requested adding new services to this waiver, © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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including environmental modifications and personal emergency response systems. For information:

 NJ Division of Disability Services 1-888-285-3036, or 609-588-2620 www.state.nj.us/humanservices/dds/ Traumatic Brain Injury (TBI) Medicaid Waiver This waiver is for people ages 18 to 65 with an acquired brain injury, and provides case management, counseling, community residential services, therapies, behavioral programs, environmental modifications, day programming, personal care assistant, transportation, respite care, night supervision, chore services, and companion services for those who qualify. For more information:

 Morris County Office of Temporary Assistance (Medicaid Unit) 973-326-7878 www.morrishumanservices.org/hs/ Community Care Medicaid Waiver (CCW) This waiver is for individuals registered with the NJ Division of Developmental Disabilities (the disability had to have manifested before the age of 22), and provides case management, rehabilitation, individual supports, environmental and vehicle accessibility adaptation, personal emergency response system, and respite care. For more information:

 NJ Division of Developmental Disabilities, regional office 973-927-2600 www.state.nj.us/humanservices/ddd/index.html Medicaid’s Personal Preference: Cash & Counseling Demonstration Project This is a national research and demonstration project sponsored by the Robert Wood Johnson Foundation to study the effects of allowing Medicaid recipients with disabilities who are eligible for Personal Care Assistance services to direct their own care. Through a monthly cash allowance, participants work with a consultant to develop a cash management plan by which they decide the services they need and the individuals and/or agencies they wish to hire to provide the identified services. The program requires greater individual responsibility, but also offers participants greater control, flexibility, and choice. For more information:

 NJ Division of Disability Services 1-888-285-3036 www.state.nj.us/humanservices/dds/ State Children's Health Insurance Program (SCHIP) The State Children’s Health Insurance Program enables states to provide health insurance to children from working families with incomes too high to qualify for Medicaid, but too low to afford private health insurance. The program provides coverage for prescription drugs, vision, hearing, and mental health services and is available in all 50 states and the District of Columbia. Your state Medicaid agency can provide more information about this program, or for more information:

 1-877-543-7669 www.njfamilycare.org/index.html © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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General Financial Planning Financial Planners Professional financial planners look at a person’s long-term financial goals, and analyze assets, income, investments, and personal concerns. From there, the financial planner will provide advice and plans on how to maximize returns and minimize expenses through investments and reinvestments. To find a planner:

 Financial Planning Association 1-800-647-6340 www.plannersearch.org  National Association of Personal Financial Advisors 1-800-366-2732 www.napfa.org  AARP www.aarp.org Bill-Paying Services If your loved one is no longer capable of handling his or her own finances, sometimes an option is to hire an individual to pay all of the bills. These professionals will ensure that anything that is billed to your loved one is taken care of. A bill paying service will submit a report to the power of attorney. This report will include all of the money necessary to pay the bills for that month as well as the service fee. The American Association of Daily Money Mangers is a membership organization comprised of individuals who provide money management services. AADMM provides a listing of money managers by geographic area.

 American Association of Daily Money Managers (AADMM) 1-877-326-5991 www.aadmm.com

Financial & Tax Assistance/Savings Programs Temporary Assistance/General Assistance/Food Stamps This program provides a variety of financial, medical, and social services to persons/families who meet certain criteria, depending on family size, monthly income, and assets and resources. For eligibility and benefits information, call your town’s Municipal Welfare Office, or contact:

 Morris County Office of Temporary Assistance 973-326-7800 www.morrishumanservices.org/hs/

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New Jersey’s Homestead Property Relief Program The Homestead Credit/Rebate Program provides credits or rebates for homeowners and tenants who occupied their principal residence in New Jersey on October 1 of the year for which the credit applies, paid property taxes on that dwelling either directly or through rent, and whose gross income for the entire year does not exceed certain limits.

 Taxpayer Customer Service Center 609-292-6400 www.state.nj.us/treasury/taxation/ New Jersey’s Property Tax Reimbursement Program also known as the “Senior Freeze” This program reimburses eligible senior citizens and people with disabilities for property tax increases. The amount of the reimbursement is the difference between the amount of property taxes that were due and paid in the "base year" (the first year that all eligibility requirements are met) and the amount due and paid in the current year for which the reimbursement is being claimed, provided the amount paid in the current year was greater. The applicant must meet all the eligibility requirements for the base year and for each succeeding year, up to and including the current year to qualify for the reimbursement.

 Taxpayer Customer Service Center 609-292-6400 www.state.nj.us/treasury/taxation/

Prescription Assistance/Savings Programs Pharmaceutical Assistance to the Aging and Disabled (PAAD) New Jersey’s PAAD program provides pharmaceutical assistance to residents 65 years of age or older or 18 years of age and older if receiving Social Security Disability benefits. This is a means-based program. Single adults with annual income of less than $24,432 and married couples with annual income less than $29,956 in 2009 are eligible. Income eligibility changes annually. PAAD beneficiaries are also required to enroll in a Medicare Part D Prescription Drug Plan. They do not pay premiums, deductibles, or any out-of-pocket costs beyond the regular PAAD copayment of $6.00 for generic drugs or $7.00 for brand name drugs. People eligible for PAAD are usually eligible for the Lifeline Program and the Hearing Aid Assistance to the Aging and Disabled Program (HAAAD).

 NJ Department of Health and Senior Services 1-800-792-9745 or www.state.nj.us/health/seniorbenefits/services.shtml Senior Gold Another program of the New Jersey State Department of Health and Senior Services, this Statefunded prescription program has a different co-payment structure and higher income eligibility requirements than PAAD. Members pay a co-payment of $15 plus 50% of the remaining cost of each covered prescription until they reach annual out-of-pocket expenses exceeding $2,000 for single persons or $3,000 for married couples. When they have exceeded their annual out-of-pocket expense, they pay only the flat $15 co-payment per prescription for the remainder of the year. There are other restrictions and coordination with other insurance benefits or Medicare Part D.

 NJ Department of Health and Senior Services 1-800-792-9745 www.state.nj.us/health/seniorbenefits/services.shtml © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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FamilyWize Prescription Drug Discount Card FamilyWize in partnership with United Way offers a free Prescription Drug Discount Card that can offer immediate savings on prescription drugs at participating pharmacies for people that have no health insurance, during deductible periods and for prescription medicine not covered by health insurance, Medicare or other benefit plans. It is not insurance, nor is it intended to replace insurance. It can save an average of up to 30% or more off the pharmacy's usual and customary retail price of prescription drugs, with the highest savings on generic drugs. The cost will be the discount price with the FamilyWize card or the pharmacy's usual and customary retail price, whichever is lower. For more information or to receive a card:

 United Way of Morris County 973-993-1160, ext 108 www.LiveUnitedMorris.org/ourwork/heal_hliprojects.php or  www.familywize.com Pharmacy Owners Providers Services (POPS) Provides all residents of Morris County and dependents in the same house, not currently covered through any government sponsored or employer-based prescription insurance program, with savings of up to 50% on prescription medications. An annual, non-refundable membership fee of $20.00, or a 3-year fee of $40.00, is required. You may use POPS at any participating Morris County pharmacy. There are no age, income, or preexisting condition exclusions, no deductibles, no limits on quantities, and no forms to complete, except the initial application, along with proof of Morris County residency. For more information:

 Morris County Division on Aging, Disabilities & Veterans/NJ EASE 1-800-564-4656 www.morrishumanservices.org/dvs/ RX4NJ Rx4NJ is a website designed to help low-income, uninsured New Jersey residents get free or discounted brand-name medicines. State agencies and community organizations worked together with America's pharmaceutical companies to develop Rx4NJ. If you have a hard time paying for your medications, you may be eligible for help in paying for your prescriptions. Rx4NJ makes it easy to find out if you or a loved one qualify for assistance. Once you provide the website with basic information related to prescriptions, income, and current prescription medicine coverage, Rx4NJ will be able to tell you what patient assistance programs you may be eligible for. If you are eligible, you will receive an application that can be printed out and returned directly to the drug manufacturer for final approval, after your doctor has approved and signed it. For information:

 www.rx4nj.org 1-888-793-6765

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Other Assistance/Savings Programs Hearing Aid Assistance to the Aged and Disabled (HAAAD) HAAAD provides a $100 reimbursement to eligible persons who purchase a hearing aid. Persons must meet the PAAD eligibility requirements.

 NJ Department of Health and Senior Services 1-800-792-9745 www.state.nj.us/health/seniorbenefits/services.shtml Telephone Verizon offers two assistance programs for phone service for people with low incomes. Through Link Up America, eligible new customers receive a 50% discount on the initial phone connection charge, with the remaining 50% paid in 12 monthly installments. Through Communications Lifeline, existing Verizon residential customers may be eligible to receive discounted local telephone service. Communications Lifeline makes local telephone service available to people who might not be able to afford phone service. To see if you are eligible for Link Up America or Communications Lifeline:

 1-888-337-3339 Utilities Low Income Home Energy Assistance Program (LIHEAP) and Universal Service Fund (USF) The Low Income Home Energy Assistance Program (LIHEAP) is designed to help low-income families and individuals meet home heating and medically necessary cooling costs. Applications are usually accepted between November 1 and April 30. To apply for LIHEAP, you need to contact the authorized local community action agency or community based organization in your area. To be eligible for LIHEAP benefits, the applicant household must be responsible for home heating or cooling costs, either directly or included in the rent; and have gross income at or below 225% of the federal poverty level. Persons who live in public housing and/or receive rental assistance are not eligible unless they pay for their own heating/cooling costs directly to the fuel supplier. The amount of the LIHEAP heating benefit is determined by income, household size, fuel type, and heating region. See website noted below to find LIHEAP income eligibility levels.

Please Note: The LIHEAP application is also an application for the Universal Service Fund Program (USF). You apply for two benefit programs at the same time using one application. USF is a program created by the State of New Jersey to help make natural gas and electric bills more affordable for low-income households. If you are eligible, USF can lower the amount you pay for gas and electricity. To be eligible, a household gross income must be at or below 175% of the Federal Poverty Level and pay more than 3% of its annual income for electric, or more than 3% for natural gas. If a household has electric heat, it must spend more than 6% of its annual income on electricity to be eligible.

 For more information about USF: 1-866-240-1347  For further information on LIHEAP or to locate the nearest application agency: 1-800-510-3102 or www.energyassistance.nj.gov © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Lifeline Utility Assistance Lifeline is a utility assistance program that offers a $225 credit on electric and gas utility bills for persons who meet the PAAD eligibility requirements or who receive SSI.

 NJ Department of Health and Senior Services 1-800-792-9745 www.state.nj.us/health/seniorbenefits/services.shtml New Jersey SHARES A statewide, nonprofit 501(c)(3) organization which provides grants to pay the utility bills of households in need through a statewide network of more than 100 community-based social service agencies. For information on applying for assistance:

 1-866-NJSHARES www.njshares.org/ NJ Hospital Care Payment Assistance Program (Charity Care Assistance) This program offers free or reduced charge care to patients who receive inpatient and outpatient services at acute care hospitals throughout the State of New Jersey. Hospital assistance and reduced charge care are available only for necessary hospital care. Some services such as physician fees, anesthesiology fees, radiology interpretation, and outpatient prescriptions are separate from hospital charges and may not be eligible for reduction. Hospital care payment assistance is available to residents who: • • •

Have no health coverage or have coverage that pays only for part of the bill: and Are ineligible for any private or government sponsored coverage (such as Medicaid); and Meet both income and assets eligibility criteria.

For information on eligibility and on how to apply:

 NJ Department of Health & Human Services 1-866-588-5696 www.state.nj.us/health/cc/ Veterans An individual with a disability who is a veteran or whose parent or spouse is or was a veteran, may be eligible for monthly cash payments, assistance with educational costs, medical care, vocational assistance, rehabilitation, or other benefits. In addition, a person with a disability who is a veteran may be eligible for grants for specifically adapted housing. For information:

 Morris County Division on Aging, Disabilities & Veterans/NJ EASE 1-800-564-4656 or 973-285-6866 www.morrishumanservices.org/dvs/  Veterans’ Affairs Hotline 1-800-624-0508 www.va.gov

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Long Term Care Insurance About 44% of all people age 65 and older will need nursing home care at some point in their lives. The average age for entering a nursing home is 83. One-third of those who enter a nursing home will stay three months or less, and 20% will stay about a year. The balance of older adults, or about one half, will remain in a nursing home more than a year, at a current cost of about $100,000 per year. Private insurance can play a vital role in protecting against what, for some, can become an economic catastrophe. Often, at the point when caregiving is necessary, the opportunity to insure for long term coverage to help cover nursing home costs has passed, and the person needing care is deemed “uninsurable.” As a caregiver, you should become aware of the conditions of coverage of the insurance carried by the person you care for. Key things to watch for include: • • • •

• • • • • •

waiting periods policy requirements for Medicare approval what, if any, limits exist on daily medical benefits what are benefit coverages for: o Alzheimer’s o respite care o skilled, intermediate or custodial care types of care facilities covered or not covered are in-home services covered coverages for assisted living or community senior center ability to use benefit for care within a nursing home or facility benefits for personal grooming ability to upgrade to higher benefits or less restrictive coverage, protection against inflation

As a caregiver, you should review and write down key information in an easily accessible place, and know all insurance coverages, including home, auto, health, disability, and life. Easily accessible records should include location where actual policies are kept, and current contact information for each applicable agent.

As a caregiver, it is a good idea to be familiar with all your loved one’s key financial and insurance information, and to keep copies of important documents, including those submitted to assistance programs. Take time to review insurance coverages, including home, auto, health, disability, and life, and keep records that include location where actual policies are kept, and current contact information for each applicable agent. Keep all records in an easily accessible place, and be sure to share with another family member where this important information can be found.

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8. Legal Matters Relating to Loved Ones with Mental Illness A list of key legal terms relating to caregiving for a loved one can be found in Appendix C.

The following is intended as a general informational overview of legal issues that caregivers should consider as they care for a family member or friend with mental illness, and does not constitute legal advice. For specific legal advice, always seek professional counsel.

Voluntary Psychiatric Admission When it is determined that inpatient treatment is warranted, the patient may sign himself or herself into a mental health facility on a voluntary basis. At a later time, the patient may sign out at will. In New Jersey, mental health facilities delay release for 48 hours. During this time, the mental health facility can initiate involuntary commitment to treatment proceedings if it is believed that the patient is unable to provide basic care for him or herself, or if the patient is dangerous to themselves, others, or property because of his or her mental illness. In addition, the mental health facility must also believe that the patient is not likely to seek and/or benefit from outpatient mental health treatment.

Involuntary Commitment to Treatment The Legislature in New Jersey finds that the State is responsible for providing care, in the least restrictive environment possible, to individuals who meet the involuntary commitment to treatment criteria, namely, if dangerous to themselves, others, or property because of their mental illness.

Privacy and Confidentiality During treatment or the helping process, clients will often disclose private and sensitive information that they may not reveal to anyone else. Confidentiality refers to the protection of client communications, records, and information received and kept by the mental health professional or the agency. Agencies and mental health professionals are governed by policies and/or professional codes of ethics that oversee each client’s right to privacy and confidentiality. Confidential information is usually only disclosed after the client has signed consent, authorizing the release or sharing of confidential information.

Criminal Justice System The Mental Health Association of Morris County’s Forensic Liaison Services provides case management services to individuals with mental illness who have been involved in the criminal justice system, connecting them with appropriate resources.  Mental Health Association of Morris County 973-334-3496 www.mhamorris.org © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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General Legal Considerations It is important that the person for whom you provide care understands his or her legal rights, and that they take the necessary steps to protect themselves and their interests. Depending on circumstances, it may be important for you as the caregiver to be involved as well in legal matters. Of course, the depth of your involvement may change as care needs increase. If your loved one with mental illness is also a senior, there are a variety of elder law issues to consider as well. The following is intended as a general overview of law and other legal issues that caregivers should consider as they care for their loved one.

Legal Capacity A starting point for legal documents is having the mental capability to understand the meaning and importance of these documents. Stated differently, legal capacity is the level of judgment and decision-making needed to create legally binding wills, trusts, and powers of attorney.

Key Legal Documents & Issues Power of Attorney A power of attorney is a legal document transferring decision-making authority to a person designated by you in advance. The power can be related to the management of your property or related to decisions about medical treatment. The power can be a “durable power,” meaning that it continues in the event of disability, or a “springing power,” meaning it takes legal effect only after disability. Unlike many other uses of the term “disability” - which might refer to a physical disability, when the term is used within a Power of Attorney, “disability” means lacking mental capability to manage property or make decisions about medical treatment. A person in a coma would be an obvious example of having a “disability” and being unable to make decisions on his or her own. Caregivers should be aware of what, who, and where powers of attorney have been provided. These documents should be current, accessible, and understood by the caregiver.

Power of Attorney over Medical Decisions The Power of Attorney over Medical Decisions appoints a person to represent your loved one in making medical decisions for him or her. It defines the limits and extent of such power. Other terms used to describe a power of attorney over medical decisions are “power of attorney for health decisions”, “health care proxy”, “medical directive”, and “advanced directive for health care”. Caregivers should also be aware of some key laws governing medical directives. The Patient Self Determination Act ensures that all adult patients know the extent of their right to control health care decisions, particularly through the use of health care directives.

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A living will is a type of advanced directive related to medical decisions for the terminally ill. The living will comes into play when a person’s condition is terminal with no expectation of recovery. The living will sets forth the type of medical care, the extent of life support, the possible removal of life support and instructions as to how and where your loved one would like to be cared in the final stage of life. The New Jersey Advance Directives for Health Care Act requires a doctor or hospital to make an affirmative inquiry to find out if your loved one has any advanced directives. As a final point, make sure that all those named in your loved one’s power of attorney are aware, have a copy of the document and have access to the original should they ever need to act for your loved one under that power. Also, make sure to have one or two back-ups named on these documents.

Living Will A living will, as mentioned above, is a type of directive providing comprehensive instruction as to the medical situations where a patient would want to be kept alive and what measures should or should not be used to prolong life or delay death. A living will is a critical legal document for you as it clearly articulates the wishes of your loved one. Without such instruction, you, as the caregiver, could be left speculating as to how, when and to what extent your loved one wants medical means to continue or not continue his or her life. Their guidance is most instructive and important. His or her directions go a long way to help ease your burden in carrying out decisions that your loved one may not be able to make independently.

Psychiatric Advanced Directive (“PAD”) A PAD is a legal document that allows an individual with mental illness to direct who will make health care decisions for them and to state their wishes for mental health treatment if they become unable to make decisions for themselves in the future. The psychiatric advanced directive may be used to accept or refuse any procedure or treatment. Like advance directives for end-of-life care, PADs are either instructional (living will) and/or agent driven (durable power of attorney.) PADs offer an approach to personal empowerment and crisis prevention that is not widely used, as of yet.

Will A will is an important document for anyone. Caregivers should be familiar with the uses of a will. A will is the written statement of a person’s wishes as to the disposition of his or her property following death. It takes effect upon death. Up until death (providing mental capacity as discussed above), a will can be amended or revoked. The person executing the will is known as the “testator.” To make a valid will, the person must possess the mental capacity to know what he or she is doing. It is not an excessively high standard of “awareness” but does require awareness of some essential facts. For example, does the person know if he is married and if his spouse is alive? If he has children, can he name them, know approximately how old they are and where they live? Does he know, roughly, what he owns, such as houses and bank accounts, and does he understand that the purpose of a will is to leave the things he owns to the person whom he names in the will? If the person cannot be conversant about such basic facts, more than likely he does not have the mental capacity to execute, modify, or rescind a will. © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Capacity is measured at the time a person makes and signs his or her will. This is important as a person with mental illness, who may be beginning to lose mental capacity, may have good days and bad days. So long as the person makes the will or changes to the will on a day in which he had mental capacity to understand what he or she was generally doing, and this can be later proven, then the legal system will uphold the wishes of the “testator.” A will accomplishes a number of important issues. A will allows for the nomination of an executor; without a will, the state would determine who is to serve as executor of your estate. A will avoids “intestacy.” Intestacy is where, in the absence of a will, state law dictates who inherits a person’s probate assets. A will allows a person to define who gets what property. Often a person wants to provide a specific person with a specific item of property. A will allows for such special bequests. A person may want to distribute property unequally to children, as children often have different needs; a will allows for such unequal distributions. A person may want to disinherit a natural heir; a will allows for disinheritance. A will allows for the nomination of a guardian or trustee, if the person dies with minor children. As stated above, a will dictates who inherits your loved one’s “probate assets.” Not all assets are “probate assets.” That depends upon how the assets are owned. Assets which are “not” probate assets pass directly to the person named as “beneficiary” or co-owner of the asset. Examples of assets which could pass directly and avoid probate would be joint accounts, assets in a revocable living trust, pay-on-death accounts, transfer-on-death accounts, annuities with a named beneficiary, life insurance with a named beneficiary, certificates of deposits with a named beneficiary, individual retirement accounts with a named beneficiary, and assets owned “tenancy by entireties.” It is important to note that many of these assets have a “named beneficiary,” which should be reviewed annually as life changes.

Trusts

Please also see Caregiving for an Aging Loved One, Chapter 8 and Caregiving for a Loved One with a Disability, Chapter 8 for more information on responsibilities of the Executor and how to probate wills.

A trust is a contractual three party arrangement where one person transfers property to another person to hold in trust for the benefit of a third person. While that may sound confusing, a properly designed trust accomplishes as much as a will, while providing a greater flexibility for life and estate planning. A trust may be “revocable” or “irrevocable.” A trust may exist while your loved one is alive (living trust) or created via a will (testamentary trust).

Irrevocable Trust An irrevocable trust cannot be amended or changed. The person transferring the property (the “trustor”) cannot later change his or her mind. There are many tax and planning reasons why a person would transfer property through an irrevocable trust.

Revocable Trust A “revocable” trust can, by its definition, be amended or changed. Like a will, the person transferring the property can change his or her mind or change the terms of the trust. It is © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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completely flexible. As such, a revocable trust serves a wide variety of needs related to lifetime planning, extending control over your loved one’s estate following death and minimizing succession transfer costs, such as probate avoidance and reduction of estate taxes. For a trust to be “living,” it must be what is called “funded.” This simply means that the “grantor” has transferred assets currently owned into the trust. It makes little sense to create a “living trust” and then not transfer or convey the ownership of property into the trust. Examples of property to be placed or funded into a living trust would be real estate, annuities, stocks, bonds, and bank accounts. Vehicles can be owned by the trust depending on the situation. Special tax deferred investment accounts such as IRAs and pension rights are usually not owned by a revocable living trust. A revocable living trust does all that a will does, plus more. It allows for the continued management of your loved one’s assets should he or she become disabled due to mental illness or another disability. A trust avoids the need, delay, and cost of probate. A will becomes a public document; a trust does not and, thus, is a great way to keep your loved one’s affairs private.

Special Needs Trust The only reliable method of making sure that an inheritance actually has a chance of reaching a person with a disability, including mental illness, when he or she needs it is through the legal device known as a Special Needs Trust (SNT). The SNT is developed to manage resources while maintaining the individual's eligibility for public assistance benefits. By leaving whatever resources it deems appropriate to the trust, the family ensures that the money is available to the person with the disability. A trustee on behalf of the person with the disability manages the trust.

Letter of Intent A will and a special needs trust are important, but these documents rarely carry out the wishes of the family as intended unless the parents build a strong planning foundation by first developing a comprehensive and flexible life plan for and with the person with a disability or mental illness. A letter of intent is a non-legal document that allows the parents of a person with a disability or mental illness to put into writing their wishes for their child. The parents are asked to decide what they want for their child in all of the major live areas: residential placement, education, employment, socialization, religion, medical care, final arrangements and so on. For more information on estate planning and a Letter of Intent:

 www.kidsource.com/kidsource/content4/estate.dis.all.3.html

Future Planning Guardianship All individuals become legal adults at age 18. This is true for individuals with mental illness as well. As a parent of a child with a mental illness you may apply for guardianship when your child turns 18 if you believe your child is unable to manage his or her personal or property affairs; you do not automatically become the guardian just because your child has a disability. If your loved one is over the age of 18 and unable to act as his or her own guardian, you will need to follow the same procedure. © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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When no advance directive exists and a person becomes unable to manage their personal or property affairs – life’s decisions, including medical decisions, come to a halt. In that situation, the caregiver, or other involved individuals /organizations, must go to the Court and petition for a Letter of Guardianship. Guardianship is basically Court supervised decision-making by another person. Guardianship takes two forms. A guardian of the property has authority to manage the financial affairs for an older person or someone with a disability, including mental illness. A guardian of the person has authority to make health care decisions for an older adult or someone with a disability. New Jersey sets forth a priority of persons who may serve as guardian, with the spouse or next of kin first in line for consideration. Appointment of a guardian is a Court process governed by statute. It requires a Complaint often filed by a family member (“petitioner”), two doctors stating the person is mentally unable to handle their own affairs, a court appointed attorney to represent the elder, and the petitioner’s attorney. Then, a hearing will be scheduled. Following the hearing, a judge will rule on the Complaint and if appropriate, issue a judgment appointing guardianship. If at some later time, your loved one gains the capacity to manage his or her affairs, the guardianship can and should be terminated There are two types of guardianship: Limited Guardianship The guardian is limited by the conditions in which they will have authority. Limited guardianship is appropriate when the individual with the disability or mental illness is still able to make some of his or her own decisions, but may need assistance with major decisions, such as financial or medical decisions. Plenary Guardianship The guardian is assigned total decision-making authority. The individual with the disability or mental illness is not able to make any of his or her own decisions. There are two ways to appoint a guardian for a person with a disability or mental illness. If your child was registered with DDD, you can apply through DDD, which can be time consuming, or you can apply with a private, special needs attorney. If you choose to use a private attorney, make sure that the attorney you choose has a concentration in special needs issues. Your child’s school, or agencies you deal with, or other families in your situation can most likely recommend attorneys that are knowledgeable and experienced in this area.

Burial Fund A burial fund is money set aside to pay for burial expenses. This money can be in a bank account, other financial instrument, or a prepaid burial arrangement. This can be helpful to eliminate emotional stress and financial burden on a caregiver, or other family member at the time of a person’s death. Parents of a child with a disability can set up a burial fund to ensure that their child’s end-of-life costs are covered if they will not be here to address these needs. The maximum dollar amount allowed in a burial account is $1500 per person. A good resource for information on funeral arrangements is www.aarp.org/families/grief-loss/

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9. Day Treatment Programs for Loved Ones with Mental Illness When individuals with serious mental illness find it difficult to work, learn, socialize, and live independently outside a hospital, rehabilitation services, either through freestanding programs or through mental health centers, may be available in your community. These programs offer a variety of skill-building activities to assist your loved one in learning, living, working, and developing interpersonal skills that will help him or her live as independently and productively as possible in the community. They also provide opportunities for someone with mental illness to access psychiatric services, counseling, social skills programs, wellness groups, and education about mental illness and medications. While mental health services do not offer specific home care or day programs like those available for older adults or people with physical disabilities, there are options available to those who may not be in need of hospitalization, but do require a structured environment.

Rehabilitation Services: Partial Care or Day Treatment These programs are commonly found as Rehabilitation Services, and are also known as Intensive Outpatient Programs, Partial Care Programs and Partial Hospital Programs. The programs are appropriate when hospitalization is not necessary or no longer required, but other outpatient services are too limited. They allow individuals to return home each day after treatment, and begin transitioning to everyday living situations and challenges. The programs provide adults with short-term treatment that is tailored to their level of functioning. They also provide individuals with structured activity on a full or half-day basis. Activities include group and individual counseling, case management, daily living skills, wellness and recovery activities, socialization and recreation, prevocational programs and medication monitoring. For more information on locating the services:

 Mental Health Association of Morris County 973-334-3496 www.mhamorris.org  Morris County Dept. of Human Services, Mental Health Administrator 973-285-6852 Substance Abuse Services There are a number of substance abuse programs and services available to Morris County residents. For more information:

 Morris County Dept. of Human Services, Addictions Services Administrator 973-285-6867 © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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10. Employment & Volunteering for Loved Ones with Mental Illness Employment As caregivers, we want our loved ones to lead as full a life as possible. For people with mental illness, employment often helps to promote independence and the chance to lead a more productive and fulfilling life. Working provides a sense of purpose and a source of dignity. Most people, including those with severe mental illnesses, report that they want to work or volunteer. For some people, a supportive environment or job coaching can increase the chances that they will have a long-lasting positive work experience. Unemployment and underemployment are issues that affect individuals with mental illness. Many of these individuals do not have the same opportunity to contribute and achieve their potential because of barriers they face when trying to obtain competitive employment. Accelerated entry into competitive work, integrated services that address needs across life areas and ongoing supports are central to successful employment for many who are coping with mental illness. Supported Employment (SE) has been shown to be the most effective service in achieving competitive employment success. There are some state and county agencies which assist individuals with mental illness in their efforts to find, and keep employment:

NJ Division of Vocational Rehabilitation Services (DVRS) This Division helps individuals with disabilities achieve employment that is consistent with their strengths, priorities, needs, abilities, and capabilities. They provide assistance to those that are having trouble finding or holding a job because of their disability. If an individual has a disability that is preventing him or her from working, or which is endangering their present employment, call for more information:

 Morris County DVRS office 973-631-6304 http://lwd.dol.state.nj.us/labor/dvrs/DVRIndex.html Employment Horizons This agency provides comprehensive employment, training, and job placement for individuals with disabilities and other disadvantages. It serves individuals 16 years of age and older who have developmental, physical, emotional disabilities, or other conditions that limit their ability to obtain or maintain a job. Applicants are referred by various governmental agencies and school districts that also pay the fees for services provided. All applicants must attend an intake interview as part of the pre-screening process to ensure that services match the individual’s needs. Applicants must have the ability to care for their personal hygiene independently, be self-medicating and behave in a manner that is not dangerous to themselves or others.

 973-538-8822 www.emhorizons.org © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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NewBridge Services, Inc NewBridge 70001 is a youth employment and education program for Morris County young adults aged 16 to 21 who have dropped out of school. This program provides them a second chance and tools to help them lead successful and productive lives.

 973-335-0666 www.newbridge.org Saint Clare’s Career Services Learning Enhancement And Resource Network (L.E.A.R.N.) provides information, resources and supports in order for participants to gain access to educational opportunities and to successfully complete their course of study. The goal is to create a climate of hope, encouragement, expectation and success for students in their educational endeavors.

 973-401-2190 www.saintclares.org/services/services_ak/behavioral/CommunityBased.asp Job Network of Morris County (Supported Employment) assists individuals with emotional disabilities obtain and succeed in employment in the competitive market. The service helps at every step of the employment process, from the job search and interviews to ongoing support, including job coaching by qualified professionals and follow-along supportive counseling. For those with disabilities, working is an important step in the reintegration into the community.

 973-625-7097 www.saintclares.org/services/services_ak/behavioral/CommunityBased.asp

Volunteer Programs Morris County offers various volunteering opportunities. These provide opportunities for individuals to connect with other members of the community and share their skills and experiences. For more information:

 Mental Health Association of Morris County 973-334-3496 www.mhamorris.org  Volunteer Management Center, Inc. (VMC) 973-538-7200 www.vmcnj.org

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11. Housing for Loved Ones with Mental Illness There are a range of residential options available through mental health service providers, including group homes and shared apartments with different levels of supervision, as well as individual apartments with supportive services attached. There are also affordable housing options with or without support services and rental vouchers to assist low income individuals and families with their rent. There is also a crisis residence available through Saint Clare’s CARES program designed to prevent unnecessary hospitalization. In addition, boarding home outreach is available through NewBridge Services, Inc.

If Your Loved One with Mental Illness is Homeless The Mental Health Association of Morris County offers outreach through their Homeless Outreach to the Mentally Ill (HOMI) and Step off the Street programs. They can also refer you to a number of shelters that are available in the county.

 Mental Health Association of Morris County 973-334-3496 www.mhamorris.org

Residential Programs in Morris County The mental health providers listed below offer a range of residential services including shared living and individual apartments with and without support services. Some of these agencies are affordable housing landlords as well. (See Rental Vouchers/Project Based section below.) Please check their websites or contact them directly for specific information. But please be prepared, there are often waiting lists and most providers will want to speak directly to the potential tenant. There are often personal questions that are asked to determine eligibility that must be answered by the potential tenant.

 Community Hope 973-463-9600 www.communityhope-nj.org  NewBridge Services, Inc. 973-686-2200 or 973-839-2520 www.newbridge.org  Mental Health Association of Morris County 973-334-3496 www.mhamorris.org  Saint Clare’s Behavioral Health 1-888-626-2111 www.saintclares.org/services/services_ak/behavioral/CommunityBased.asp

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Housing/Housing Assistance Programs Public Housing The largest group of affordable units is public housing. Housing authorities administer this federal program. New Jersey has about 100 housing authorities. Housing authorities get federal funds to build and run public housing developments. Most have rental units, but some have houses for sale. Rents and sale prices depend on household income and can be no more than 30% of adjusted earnings. People who live in public housing earn less than 80% of median family income. Federal rules require housing authorities to keep a certain percentage of these units for very low-income households, earning 50% or less than median family income. Some housing authorities must reserve units for extremely low-income households with earnings at or below 30% of median. Use federal income standards to determine eligibility. All rental units must be within Fair Market Rent. Housing authorities often have waiting lists, depending on local conditions. Public housing authorities may give priority to people who live or work in the communities they serve. The people who operate these authorities are an excellent resource. They know the local housing market and are aware of other programs and opportunities that might be available. The following are County and Municipal Housing Authorities in Morris County:     

Boonton Housing Authority: Dover Housing Authority: Madison Housing Authority: Morris County Housing Authority: Morristown Housing Authority:

973-335-0846 973-361-9444 973-377-0258 973-540-0389 973-538-6343

Rental Vouchers Rental vouchers are available to individuals and families who are low- or very low-income. To determine whether your loved one meets these income criteria, consult the HUD published “Income Limits” page on the HUD website: www.huduser.org/datasets/il.html The income limits change every year. Some New Jersey programs use income limits published by the Council on Affordable Housing (COAH) – these numbers are similar to HUD’s, but slightly different: www.state.nj.us/dca/affiliates/coah/reports/incomelimits.pdf Some voucher programs have “set-asides” for those who are considered low or moderate income (below 80% of the Area Median Income), those who have special needs (such as mental illness) and those over age 62. If your loved one falls into any of these categories, ask for information on programs specific to that group(s). There are two types of rental vouchers – those that are tenant based and those that are project based: Tenant based vouchers are provided directly to the tenant, and allow the tenant to pay a portion of their income toward rent. The amounts vary by program, but typically, the tenant pays 30% - 40% of the monthly household income toward rent and utilities – the remaining rent is paid directly to the landlord from the subsidy provider. When the tenant moves, the voucher can be transferred to another rental unit. © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Agencies often have waiting lists for vouchers. Depending on the length of the lists, the agency may “close” the list until the number falls beneath a certain threshold. Assuming that you’ll be placed on a waiting list, it is advised that you contact as many of the agencies that you can. There is no penalty for being on more than one list (but ultimately, you can only accept one voucher). Each agency may represent a different geography and/or type of housing. The following agencies offer tenant based vouchers:      

Boonton Housing Authority: 973-335-0846 Dover Housing Authority: 973-361-9444 Madison Housing Authority: 973-377-0258 Morris County Housing Authority: 973-540-0389 Morristown Housing Authority: 973-538-6343 NJ Dept. of Community Affairs 609-292-4080 www.state.nj.us/dca/divisions/dhcr/offices/srap.html

Project based vouchers are attached to the property, which means a tenant is entitled to the rental subsidy for as long as they live in that unit. When a tenant moves, the voucher is given to the next tenant in that unit. Tenants pay 25% - 40% of monthly household income toward rent and utilities, depending on the subsidy program attached to the project. The agencies that are listed above in the Residential Housing section may have at least some units that have project based vouchers. Contact them directly to determine any availability. Be prepared that most have waiting lists, and consider having your loved one place his or her name on as many agency lists as appropriate, based on geography and housing type desired. Legal Services of Northwest Jersey provides a comprehensive guide addressing landlord and tenants’ rights. To receive a copy: 973-285-6911.

Other Housing Programs Homelessness Prevention Program Provides limited financial assistance to low- and moderate-income tenants and homeowners in imminent danger of eviction or foreclosure due to temporary financial problems beyond their control. Funds are used to disburse payments in the forms of loans and grants to landlords and mortgage companies on behalf of eligible households in danger of homelessness.

 NJ Department of Community Affairs 609-633-0973 or 1-866-889-6270 www.state.nj.us/dca/divisions/dhcr/offices/ha.html Homelessness Prevention and Rapid Re-Housing Program This new program, part of the American Recovery and Reinvestment Act of 2009, is a three year program, offering assistance to individuals and families who are either at risk of becoming homeless or are homeless but are likely to achieve stable housing with this assistance.

 Morris County Office of Temporary Assistance 973-829-8176 www.MorrisCommunityDevelopment.org © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Morris County Housing Rehab Program This homeowner rehab program serves to maintain affordable housing by enabling homeowners, experiencing major systems’ failures, e.g., failing septic, furnace, inferior roof, to remain in their homes.

 Morris County Division of Community Development 973-285-6060 www.MorrisCommunityDevelopment.org New Jersey Housing and Mortgage Finance Agency The New Jersey Housing and Mortgage Finance Agency (HMFA) has many housing programs funded from the sale of bonds. Some provide mortgage assistance and closing costs to homebuyers. Others help homeowners repair the houses they already own. Those looking to buy a house or condominium should consider calling HMFA to see about the availability of homebuyer assistance programs.

 HMFA 609-278-7400 www.state.nj.us/dca/hmfa/  HMFA Mortgage Hotline 1-800-NJ-HOUSE 1-800-654-6873

Other Types of Housing If your loved one with a mental illness is over the age of 60, please see Caregiving for an Aging Loved One, Chapter 11 for additional housing opportunities.

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12. Transportation Information for Loved Ones with Mental Illness There are several transportation resources available to Morris County residents with mental illness.

2-1-1 First Call for Help 2-1-1 First Call for Help now operates statewide, connecting people with the resources they need to solve common life problems, including transportation. It is staffed 24/7 and can be accessed by dialing 2-1-1.

 Dial 2-1-1, or 1-800-435-7555 www.NJ211.org Morris County Public Transportation The Morris County Department of Transportation can provide you with a free Transit Guide of the Morris County public transportation system. Their website can provide you with transportation information and alternatives, including rail, bus, paratransit, park-and-rides, bicycle and pedestrian travel, and ridesharing. Numerous links to other transportation resources are available on this website.

 973-829-8101 www.morrisdot.org Mental Health Association of Morris County This agency offers Community Rides, a program geared towards helping individuals with mental illness run errands on the 1st and 3rd Wednesdays of the month.

 Community Rides 973-334-3496 www.mhamorris.org NJ Transit NJ Transit provides reduced fares for senior citizens and those with a permanent disability. Senior citizens and passengers with disabilities can travel on-board NJ TRANSIT trains, buses, and light rail vehicles at a reduced fare of one-half the regular one-way fare or lower. Seniors and passengers with disabilities must present an NJ TRANSIT Reduced Fare ID or Medicare Card to obtain the reduced fare ticket. To receive discounted fares, a NJ TRANSIT Reduced Fare Card/Reduced Fare ID application must be submitted. A Social Security Card and proof of age (a birth certificate or a driver's license) must be presented when applying.

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Applications can be found at most local banks, savings and loan associations, or county Offices on Aging. Applications are also available at the NJ TRANSIT Customer Service offices at Newark Penn Station, New York Penn Station, Hoboken Terminal, and the Port Authority Bus Terminal. An application can also be mailed to you. For more information:

 NJ TRANSIT Reduced Fare Office 973-378-6401 www.njtransit.com/sf/sf_servlet.srv?hdnPageAction=ReducedFareTo Access Link NJ Transit also provides paratransit services for those people whose disability prevents them from using the local fixed route bus service. This service is called Access Link and eligibility is determined using the three categories provided in the ADA. Your loved one may be eligible for Access Link if: 1. If he or she cannot get on or off a bus or ride in an accessible bus due to a disability 2. If his or her disability prevents him/her from getting to a bus stop 3. If accessible bus service is not available in his or her area The cost of this service is the cost of the usual bus fare to your destination. To apply for Access Link an assessment is necessary. Transportation can be provided for the assessment appointment. To arrange for an assessment:

 NJ Transit 800-955-2321 TTY 800-955-6765 www.njtransit.com/tm/tm_servlet.srv?hdnPageAction=AccessibleServicesTo Handicapped Parking Passes Handicapped parking passes are available for drivers who have lost the use of one or more limbs or are permanently disabled and cannot move without an assisting device or those who transport individuals with such disabilities on a regular basis. For more information:

 NJ Motor Vehicle Commission 609-292-6500 www.state.nj.us/mvc/Vehicle/HandicappedPlates.htm MAPS MAPS (Morris Area Paratransit Services) is administered by the Morris County Division on Seniors, Disabilities and Veterans and provides transportation to medical facilities, education or employment sites, adult day care centers, and other locations. Most MAPS vehicles are able to accommodate wheelchairs. Your loved one may use MAPS if he or she is a Morris County resident and is age 60 or above, OR if he or she has a physical or mental disability that includes functional limitations. MAPS must be notified in advance if a caregiver will be traveling with the resident. For more information:

 1-888-282-MAPS (6277) www.morrishumanservices.org/dvs/

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TransOptions As the Transportation Management Association (TMA) for northwest New Jersey, TransOptions assists commuters, businesses, and local municipalities in Morris, Sussex and Warren Counties, as well as towns in suburban Essex, Passaic, and Union Counties with multiple commute options. TransOptions is available to assist you with transportation issues or questions regarding services in your area.

 973-267-7600 www.transoptions.org American Red Cross of Northwest NJ Provides transportation for veterans to medical appointments and VA hospitals. For more information:

 973-538-2160 Daughters of Israel, West Orange, NJ Provides limited fee for service transportation through their Metro Transport Program for eligible seniors and people with disabilities. In Morris County, service is only available to Parsippany, East Hanover, Florham Park, Morristown, and Whippany. For information:

 973-325-1359 Dial-A-Ride Dial-A-Ride is municipally-sponsored local transportation for senior citizens and persons with disabilities. Many towns in Morris County offer Dial-A-Ride. You must locate the Dial-A-Ride office in your municipality for information. For a list of municipalities with phone numbers, visit:

 www.co.morris.nj.us/transportation/spectrans/spectrans-dialaride.asp FISH (Friends in Service to Humanity) Volunteers provide rides, primarily to and from medical appointments.  For Mendham Borough and Township residents only: 973-543-4574

Morris on the Move (M.O.M.) M.O.M. can provide transportation for up to 18 passengers and two wheelchairs. Priority is given to public assistance and other low income residents commuting to or from work or work related activities. M.O.M. operates a shuttle service from Dover to Mt. Olive. Service is limited. For more information:

 973-829-8501 Morris County Organization for Hispanic Affairs Transportation is available for individuals in need. For more information:

 973-366-4770 © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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13. Advocacy for Loved Ones with Mental Illness Self-Advocacy Self-advocacy is when an individual knows his or her rights and responsibilities, stands up for them, and makes choices about his or her life. As a parent or caregiver of a loved one with mental illness, you may be, in many instances, your loved one’s best advocate. However, it is also important to encourage your loved one to learn how to advocate on his or her behalf. No matter what his or her level of ability may be, an individual’s ability to self-advocate is the first step in getting the assistance that he or she may need. The skill of self-advocacy is an important and critical one. As a caregiver, helping your loved one acquire that skill may be difficult, as you have become accustomed to taking care of him or her. It may be difficult but necessary, to help your loved one grow, and take on as much responsibility as he or she is capable of. A part of this growth can come from making sure your loved one is made aware of and informed about available services, and is involved in any planning processes.

Keys to Successful Advocacy on Behalf of Your Loved One Communicating effectively with professionals and learning how to navigate the system are important skills for any caregiver to learn and develop. Don’t forget that some of these skills can be acquired with advice from other caregivers or the support of caregiver coalitions or other advocacy groups.

Be patient If your loved one needs something, understand that this does not mean that he or she will get it right away. When students need a service or a piece of equipment while they are still in school, it generally gets put in place pretty quickly. That is because the laws set up for people in schools say that students are entitled to many of the things they need to be successful. Sometimes this is referred to as an entitlement-based system. After graduation and moving on to adult services, the laws are set up differently. Most government and private agencies are not able to offer enough services to help everyone needing their assistance, so people usually have to apply for services. This is sometimes referred to as an eligibility-based system. Depending on the organization, services or other assistance could be distributed on a firstcome first-served basis, or to those who need the service the most. It is up to you to know how the organization you are trying to work with makes these decisions and plan accordingly. Sometimes, there may even be long waiting lists for services. You may not know how long it takes to get to the top of the waiting list and get what you need, but one certainty is that if you don’t apply and get on the list, you will not get the services you need.

You just might be the expert in the room Be prepared to assist professionals who may have limited experience with your loved one’s exact needs. Your family doctor may be wonderful, but he or she may have little or no experience with mental illness. Share your expertise by discussing your loved one’s needs, giving as much detail as possible to help him or her understand the situation. © 2009 Caregivers Coalition of Morris County – All Rights Reserved United Way of Morris County

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Stay on people’s good side Find the line between advocacy and aggression. A successful advocate lets the system work for them. You want to stay on top of things, but don’t turn into a pest and make it harder for the professionals to do their jobs. Smile when you are talking to people…even if you are on the phone, your smile will come through in your tone of voice. Professionals are people too, and words like “please” and “thank you” will go a long way toward developing a strong working relationship.

Keep accurate notes Record keeping may seem like a hassle at first, but saves a great deal of time down the road. Whenever you have a conversation with any professional, it’s a good idea to write it down. Some caregivers keep a notebook just for this purpose. Include all contact names, phone numbers, dates of calls, and a quick summary of the discussion.

Know what you need; do your research When advocating for equipment or services, make sure to collect all the details and product information ahead of time. If insurance is being used for payment, ask both the insurance company and the equipment provider if there are pre-set guidelines or other information that will be needed. This will save a lot of time later on in the process.

Understand your insurance benefits Do not be afraid to ask questions when you are unsure of something about your insurance. Review the terms of each program and policy. Know when referrals or pre-certifications are necessary. Pay careful attention to co-pays, service limits, and equipment ownership and replacement responsibilities. Remember, you can always appeal an insurance company’s decision in the event of a denial, no matter what type of plan you are on.

Systems Advocacy Systems advocacy is a process by which organized groups or individuals come together to advocate for positive change to programs, services, and legislation. Advocacy for changes in policy or service delivery may be most effective when there is a united voice that speaks on behalf of he issue. There are numerous organizations that advocate regarding specific issues, policies, disabilities and diseases on local, state and national levels. Following are a few local organizations.

Family Support Organization of Morris and Sussex Counties The Family Support Organization of Morris and Sussex Counties is a family-run organization devoted to the needs of families whose children have emotional and behavioral challenges. Families receive peer support, information and referral services, education and advocacy within a compassionate and culturally sensitive environment. Assistance is also offered in helping caretakers navigate the complex public children’s mental health system in New Jersey

 973-770-2700 (Morris County Office) www.fso-ms.org

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Mental Health Association of Morris County This agency empowers individuals with mental illness and family members by connecting them to various forums in which they can influence mental health policy and services for both themselves and others.

 973-334-3496 www.mhamorris.org National Alliance on Mental Illness (NAMI) New Jersey The organization brings a voice to the concerns of families, friends, and persons who are affected by mental illness.

 732-940-0991 www.naminj.org Morris County Mental Health/Substance Abuse Advisory Board The mission of the Board is to ensure that a full continuum of care is available, accessible, and affordable to address the mental health and/or substance abuse prevention, education and treatment needs of Morris County residents. It advocates for a seamless system of care for individuals with a mental illness and/or substance abuse disorder and monitors the use of State and County public dollars related to mental health and/or substance abuse services.

 973-285-6868 Morris County Dept. of Human Services, Mental Health Administrator The Administrator oversees the delivery of publicly funded mental health services and addresses the questions or concerns of individuals with mental illness and their loved ones regarding the Morris County mental health system.

 973-285-6852 Caregivers Coalition of Morris County a United Way of Morris County Initiative The Coalition’s work on behalf of caregivers includes advocacy at the local, state, and national level. It is an advocate voice on your behalf. Your ideas and experiences could help direct the Coalition’s advocacy efforts. Please contact the Coalition if you are interested in joining the advocacy efforts.



973-993-1160, ext.139 www.LiveUnitedMorris.org

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14. Life Transitions for Caregivers for Loved Ones with Mental Illness Stages of Caregiving In caring for your loved one you may, over time, experience different stages of caregiving. Coping with these changing stages of caregiving will require you to manage stress, perhaps develop new skills, all while maintaining a level of flexibility as you adapt to your loved one’s changing needs. But, really, how many caregivers are given the opportunity to fully prepare? Realistically, most caregivers climb a steep learning curve, as they become a medical connoisseur, system navigator extraordinaire, assertive advocate, financial guru, and legal expert all in one. For many, this must be done while balancing a full or part-time job, children, grandchildren, spouse, and other relationships and responsibilities, while trying to maintain their own physical health, mental health, social life, and overall well-being.

You Are Not Alone We don’t need to tell you that caregiving can be, at times, exhausting. For any caregiver, the stress of providing care can generate a range of emotions on any given day - frustration, sadness, worry, even anger. So, do not try to do the entire job all alone! A strong network of friends, family, and service providers can help you keep the important work you are doing as a caregiver from become overwhelming. Ask for help, whenever you need it. Again, remember, it is important that you do not take on all your caregiving responsibilities in isolation. Through organizations noted in this support guide, you can find the resources and people you need to take care of yourself – taking care of yourself means that you will be better able to take care of your family member or friend. No matter what each stage of caregiving brings, it will always help to reach out to find the information and support you need to provide the best care possible, for your loved and for YOU.

Your Changing Role Throughout your caregiving journey, you may notice that your loved one requires different levels of care. Having to assume responsibilities that your loved one was used to doing independently can generate a range of emotions for you both, from frustration to sadness, even anger and grief. Accepting the change and identifying the issues that are associated with the illness will help you cope with the role transition that you are experiencing, as well as the changing nature of your relationship with your family member or friend. During this time, flexibility is the key. You will need to develop stress and time management skills that are necessary to cope with changes and increased demands that will occur over time.

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If you start to take on more and more daily tasks related to caregiving, it will become increasingly important to take advantage of resources in the community and whatever services you and/or your loved one are eligible for. If and when you are called upon to take on a new level of care, give yourself time to adjust. Do not expect your life to return to normal right away. The social structure you knew, the friends you had, and activities you did may have to change as you take on your caregiving role. Give yourself time to develop and establish new daily routines. And, remember that each caregiving situation is unique – no two caregivers will experience the same circumstances or transitions. There is no single way of caring. With the right information, resources, and support you will be able to care for your loved one and yourself in the best way possible. Importantly, always remember that your caregiving is a gift – one of the greatest gifts you can ever give to the one you care for; a gift to be proud of and to cherish.

Based on material from CHATS - Community Home Assistance to Seniors, Ontario, and Aetna Intilihealth

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Appendix A State & National Internet Sites with Caregiving Information

AARP www.aarp.org Membership organization for people age 50 and older; provides numerous benefits to members. Administration on Aging www.aoa.gov Provides caregivers information on various services including elder rights. Caregiver NJ www.caregivernj.nj.gov Caregiving www.strengthforcaring.com Eldercare Locator www.eldercare.gov Service of the U.S. Administration on Aging; links caregivers to senior services. Family Caregiving Alliance www.caregiver.org Programs at national, state, and local level to support caregivers. Medicare www.medicare.gov Information on Medicare, health plans, programs, eligibility and enrollment. Medicare Rights www.medicarerights.org Independent source of health-care information and assistance with Medicare. Medicare Rx www.medicarerxmatters.org Helps users make decisions about Medicare prescription drug plans, with specific section for family caregivers. National Academy of Elder Law Attorneys www.naela.org Searchable database to assist in finding an elder law attorney. National Alliance for Caregiving www.caregiving.org Focuses on research, policy analysis, developing national programs and increasing public awareness of family caregiving issues. National Association of Professional Geriatric Care Managers www.caremanager.org Website explains the role of care managers and points caregivers to local resources.

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National Caregivers Library www.CaregiversLibrary.org Hundreds of articles, forms, checklists and links to topic-specific resources, articles and studies. Merge these two entries… National Family Caregivers Association www.nfcacares.org Caregiving advocacy organization with tips and statistics on caregiving in America. National Hospice and Palliative Care Organization www.nhpco.org Information on end-of-life issues and state-specific advance directives. New Jersey Self-Help Group Clearinghouse www.njgroups.org Information and contacts for more than 4,500 self-help support groups in New Jersey. Nursing Homes www.medicare.gov.nhcompare Provides detailed information on the past performances of every Medicare – and Medicaid – certified nursing home in the country. Wellspouse Association www.wellspouse.org Focuses on the needs of spouses caring for a husband, wife or partner who is chronically ill and/or has a disability.

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Appendix B Disability Resources Alliance for Betterment of Citizens with Disabilities 609-581-8375 www.abcdnj.org DAWN Recreation 973-625-1940 Young adults 16-25, Adult group 25+ Family Support Center of New Jersey 1-800-372-6510 www.fscnj.org Madison Area YMCA 973-377-6200 973-377-4945 Morris County Adaptive Recreational Program 973-455-1288 Morris County Challenger League [email protected] Special Olympics New Jersey 609-896-8000 / 1-800-650-7665 www.sonj.org North Jersey Family & Kids Directory 1-888-579-KIDS www.njkidsdirectory.com NJ Protection and Advocacy, Inc. 609-292-9742 or 800-922-7233 (in NJ) www.njpanda.org/ SPAN: Statewide Parent Advocacy Network Provides training, assistance, and support to parents of disabled children (in Spanish also) 973-642-8100 www.spannj.org United Cerebral Palsy of Northern, Central, and Southern New Jersey 908-879-2243 Weekend & week long hotel respite United Cerebral Palsy – NJ Northwest Parents Night Out 908-813-8292 *Participants MUST be registered with DDD United States Department of Labor Features comprehensive information about disability-related programs and services www.disability.gov

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Disability/Disease Specific Organizations AIDS New Jersey AIDS Hotline 1-800-624-2377 www.state.nj.us/health/aids

Alzheimer’s Alzheimer’s Association - Greater New Jersey Chapter 973-586-4300 www.alznj.org

Amyotrophic Lateral Sclerosis (ALS) Amyotrophic Lateral Sclerosis (ALS) Association 1-800-782-4747

Arthritis North Jersey Regional Arthritis Center – 1-877-973-6500 Arthritis Foundation NJ Chapter – 1-888-845-8823

Autism New Jersey Center for Outreach and Services for the Autism Community (COSAC) 609-883-8100 or 1-800-4AUTISM www.njcosac.org

Blind/Visually Impaired Commission for the Blind and Visually Impaired 973-648-3333 www.state.nj.us/humanservices/cbvi

Brain Injury Brain Injury Association of New Jersey 732-738-1002 or 1-800-669-4323 www.bianj.org

Burn Victims Burn Survivor Resource Center 1-800-669-7700 www.burnsurvivor.com

Cancer American Cancer Society 1-800-227-2345

Cerebral Palsy Cerebral Palsy of North Jersey 973-763-9900 www.cpnj.com United Cerebral Palsy of Northern, Central and Southern New Jersey (formerly of Morris/Somerset) 908-879-2243 www.ucp.org

Chronic Fatigue NJ Chronic Fatigue Syndrome Association 609-219-0662 www.njcfsa.org

Deaf/Hard of Hearing American Sign Language – information obtainable through any Morris County library Division of the Deaf and Hard of Hearing (DDHH) 1-800-792-8339 V/TTY www.state.nj.us/humanservices/ddhh 2009 Caregivers Coalition of Morris County

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Developmental Disabilities The Arc Morris 973-540-8500 www.arcmorris.org National Information Center for Children and Youth with Disabilities (NICHCY) Email: [email protected] New Jersey Council on Developmental Disabilities 609-292-3745 or 1-800-792-8858 www.njcdd.org

Diabetes 1-800-DIABETES (1-800-342-2383) www.diabetes.org American Diabetes Association 1-877-469-7979

Epilepsy Epilepsy Foundation of New Jersey 609-392-4900 or 1-800-336-5843 www.efnj.com

Fibromyalgia National Fibromyalgia Association 714-921-0150 www.fmaware.org/index.html

Heart Disease American Heart Association 1-800-242-8721

Lung Disease American Lung Association 1-800-586-4872

Kidney Disease National Kidney Foundation 1-800-622-9010

Mental Illness National Alliance on Mental Illness of New Jersey 732-940-0991 www.naminj.org New Jersey Mental Health Cares 1-866-202-4357 www.njmentalhealthcares.org

Multiple Sclerosis National Multiple Sclerosis Society 1-800-344-4867 www.nationalmssociety.org

Spina Bifida The Spina Bifida Association 908-782-7475 www.sbatsr.org

Stroke American Stroke Association 1-888-478-7653 2009 Caregivers Coalition of Morris County

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Appendix C

Glossary of Key Law/Elder Law Terms Administrator – Person appointed by a court to represent an estate when no will was provided or the will does not name an executor. May also be referred to as a personal representative. Alternate Valuation Date – A date no more than six months after a person’s death that may be used for evaluating assets in an estate. Its use is related to federal estate tax planning. Assets - Any property of value. Assets may be tangible such as a house or intangible such as a stock, bond or savings account. Beneficiary – Most often thought of as the person named to receive the benefit of a life insurance or annuity contract, the term also applies to a person covered by Medicare. Benefit Trigger – The event qualifying someone for a benefit under an insurance contract. Bequest – An asset which is left to a person in a will or trust. Charitable Remainder Trust – Gift made in trust to a recognized charity that includes income payable to the donor during the person’s lifetime. At death, the remaining value of the gift belongs to the charity. A charitable lead trust provides income to the charity and returns the principle to the donor or estate. Codicil – A written and properly witnessed legal change or amendment to a will. Community spouse – The spouse who is not living in the nursing home and is living in the community. Sometimes called the “healthy spouse” Countable assets – Assets that count in terms of qualifying for Medicaid. Countable assets must be spent down to qualify. DNR – Refers to a person’s instruction that if breathing or their heart should stop, the doctor should not try to restart or “resuscitate”. Donee – A person who receives a gift. Donor – A person who gives a gift. Durable Power of Attorney – A legal document empowering a person to act with defined legal authority on behalf of the person granting such power and such power survives disability. All powers cease upon death. Elimination Period – the number of days one must receive care before a long term care policy benefit will begin. Estate Planning – Orderly arrangement of assets and a plan for conveying them to heirs and others in a manner calculated to minimize taxes, expenses, and delays. Estate Tax – A special federal and state tax on assets which are transferred to another upon death. Executor – Person named in a will to handle the administration of the probated estate. The female term is executrix. Fiduciary – Person who acts for another’s benefit with a highest standard of care requiring confidence, good faith, prudence, and fair dealing. Grantor – A person who establishes a trust. 2009 Caregivers Coalition of Morris County

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Guardian – A person who is legally responsible for managing the affairs and the care of another person who may be a minor or of diminished capacity. Health Care Power of Attorney – A document empowering another to make medical decisions for another. Heir – A person entitled by statute to receive property through inheritance. Intestate – Dying without a will. Irrevocable Trust – A trust which cannot be changed or cancelled. Joint Tenancy – Owning property with another both having the right of survivorship. Life Estate – An interest in property that continues for the life only of the person holding such interest. Life Settlement – The sale of a life insurance policy where the elder has a life expectancy of less than 12 years. Living Trust – A written agreement where a grantor transfers assets and property with detailed instructions to the trustee for the management and future distribution of such assets and property. Look back period – Refers to the time period of which the government will examine financial records for possible uncompensated transfers to individuals or trusts Marital Deduction – A Federal and New Jersey deduction for property received by the deceased spouse. Means-tested – A program of benefits requiring financial qualification Minimum Monthly Maintenance Needs Allowance (MMMNA) – The amount of income the community spouse can keep to live on. Morbidity Risk – The phrase used to define the probability of disability. Mortality Risk – The phrase used to define the probability of death Non-countable Assets – Assets excluded when calculating Medicaid eligibility under the Asset Test. Nursing Home Spouse – The spouse who is institutionalized in the nursing home, also known as the Institutionalized Spouse. Patient Paid Amount – Income paid to the nursing home each month by someone on Medicaid. This amount is equal to all income less certain allowable deductions; such as medical insurance premiums, a personal needs allowance and (if married) the MMMNA. Pay-On-Death – A term used for the transfer payment to another upon death of the owner of a bond or financial account. Personal-needs Allowance – The amount of money that someone on Medicaid is allowed to keep each month for personal use. Personal Property – Property which is movable (tangible) such as furniture and property which is not movable but represents an interest in other property (intangible) such as a bank account. Private Paying – Paying for long term care with your own money or long term care insurance verse Medicaid. Probate Court – A specialize state Court to handle the management of wills, estates of persons dying in testate and other functions such as guardianship. 2009 Caregivers Coalition of Morris County

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QTIP Trust – A marital trust that permits the estate to receive a marital deduction even though the surviving spouse has only an income interest in the trust. Recovery – A Medicaid term related to the state “recovering” from your estate the cost of nursing home care paid by the Medicaid program. Skilled Care – Medically necessary care provided by licensed medical professionals under doctor’s orders. Spend-down – Selling assets and spending the proceeds on your care or other allowable expenditures until your assets are low enough to qualify for Medicaid. Spendthrift Trust – Trust established for a beneficiary who lacks money management skills. Distributions are conditioned upon spending the legacy wisely. Tenancy In Common – Co-ownership of property without right of survival. It is as if each person owned separate halves and can leave their half to anyone of their choice. Tenancy In The Entirety – Joint ownership limited to married couples where each has a right of survival meaning upon one’s death, the other owns the property in the entirety. Terminally Ill – A medical diagnosis that one has less than two years to live without hope of recovery. Trust – A written agreement that enables a person or institution to hold and manage property for the benefit of the person or beneficiary named in the trust document. Trustee – The person or institution empowered to manage the trust and follow according to the written instructions of the trust. Uninsurable – Where someone is not able to purchase insurance due to health reasons or age Viatical Settlement – Insurance policy allowing for payout in advance of death should the insured become terminally or chronically ill. Will – Basic document for transferring property through the probate court to the successor of the deceased.




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