Dissertation

BOSTON UNIVERSITY SARGENT COLLEGE OF HEALTH AND REHABILITATION SCIENCES

Doctoral Project

A PARENT SUPPORT AND ADVOCACY PROGRAM: ACCESSING CONNECTIONS

by

ANN MARIE KLINE B.S. Quinnipiac University, 2001 M.S., Boston University, 2006

Submitted in partial fulfillment of the requirements for the degree of Doctor of Occupational Therapy 2009

UMI Number: 3357661 Copyright 2009 by Kline, Ann Marie

All rights reserved.

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© Copyright by ANN MARIE KLINE 2009

Approved by

fioA (JtibU PU. ML FAttA

Academic Mentor. Christine A. Helfrich, PhJ# OTR/L, FAOTA ' Assistant Professor, Dept of Occupational Therapy

Academic Advisor ' ' Karen Jacobs, EdD./DlWL, CPE, FAOTA Clinical Professor oKQecupational Therapy

Acknowledgements First and foremost I would like to thank my family, because without their support and love, I would have not been able to achieve this dream of earning a terminal degree in my chosen field of practice. My daughter has been my inspiration for this project and I know she has driven me to be even more of an advocate for children and their families. I would also like to thank the many families and children that I have had the pleasure to work with over the last eight years. All of you have taught me that it is so important to believe in yourself, your abilities and your family. I want each and every parent I come into contact with to learn that they too can believe in themselves and that they know their child best!

I would not be where I am today personally and professionally, without the support of Boston University and all of the professors at Sargent College. I could have not asked for a more phenomenal group of colleagues to guide me on my path to my doctoral degree. Christine Helfrich and Karen Jacobs have been the most wonderful support system I could ever ask for! Thank you also to all of my classmates, colleagues, New Hampshire Family Voices and colleagues at Gateways Community Services, who were part of my circle of advisors.

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A PARENT SUPPORT AND ADVOCACY PROGRAM: ACCESSING CONNECTIONS (Order No.

)

ANN MARIE KLINE Boston University, Sargent College of Health and Rehabilitation Sciences, 2009 Major Professor: Christine Helfrich, Professor of Occupational Therapy

ABSTRACT As a professional who works closely with children and their families on a daily basis, I chose to research and address the need for more accessible and comprehensive parent education, support and advocacy programs in New Hampshire. Unfortunately, in the State of New Hampshire, most parents do not know where to go for help and many families have little understanding of what services are available for their children with special needs. During the eight years of my career, I have participated in parent education/support/advocacy programs and have observed that these programs are most effective and beneficial for families if they are utilized and understood. Increasing both the accessibility and comprehensiveness of parent support and advocacy education is needed.

v

To address the critical gap in service acquisition and delivery for New Hampshire area families of children with special needs and or suspected needs, research was examined to note what methods have been used and what methods are currently in use around the country and the world to support parents in their journey and this has helped to shape ACCESSING CONNECTIONS. ACCESSING CONNECTIONS is significant to the pediatric population and their parents, because it will be an education program that will address the common needs of parents of children with special needs or suspected needs. It will be a program that will be able to address diversity, culture and all levels of literacy. I will work with already existing programs to promote their services and encourage parents to interact with programs that will support their needs.

ACCESSING CONNECTIONS will also provide parents with a database of information that they could utilize at any time and it will also afford them the opportunity to create their own social support network. Many parents of young children with special needs may also appreciate that the classes will be recorded and available for future use as well in-case they are unable to attend. This program promises to be supportive of parents needs while providing them with the tools to manage the care of their children therefore allowing them to be the parents they want to be. vi

Table of Contents Title Page

i

Copyright page

ii

Reader Approval Page

iii

Acknowledgements

iv

Abstract

v

Table of Contents

vii

List of Tables

xiii

Chapter 1: Introduction

1

Chapter 2: Theoretical and Evidenced Base to Support the Proposed Project 3 A: Current Methods of Parent Support

5

1. Peer Support Programs

5

2. Community Support Groups/Support from Medical Professionals

8

3. Care Coordination Services vii

11

B: Education Regarding Diagnosis

12

1: Education of Professionals

12

2: Education of Parents

14

C: Tools Currently In Use to Support Parents of Children with Special Needs

17

Chapter Summary

19

Strengths of Current Approaches

19

Limitations of Current Approaches

21

Support for Proposed Program

24

Chapter 3: Proposed Program Description and Information

26

Target Population and Criteria for Identifying Clients for the Program

29

Description of Proposed Program

30

Class 1

32

Class 2

33

Class 3

34

Class 4

35 viii

Class 5

36

Class 6

36

Class 7

37

Research Support for Proposed Program

38

Theoretical Perspectives used to Design the Program

39

Current Programs in Place in the State of New Hampshire

44

Potential Barriers and Challenges

45

Chapter 4: Evaluation Plan

51

Implementation Evaluation

51

Stage 1

52

Stage 2

53

Logic Model

54

Stage 3

55

Stage 4

56

Summative Evaluation

56 ix

Chapter 5: Conclusion

59

Future Objectives

59

Chapter 6: Funding Plan

61

Available Local Resources

63

Needed Resources

65

Budget Year 1

67

Year 2 Operation/Maintenance

69

Needed Resources

69

Budget Year 2

71

Potential Funding Resources

73

Chapter 7: Dissemination Plan

76

Dissemination Goals

78

Long Term Goals

78

Short Term Goals

79

Target Audiences

79 x

Key Messages

79

Sources and Messengers

81

Dissemination Activities, Tools/Techniques, Timing and Responsibilities

81

Budget

84

Evaluation

84

Appendix A: Annotations

86

Appendix B: Informational Survey for Parents

145

Demographic Information to Support Parent Networking

148

Appendix C: Data from National Family Voices Program

149

Appendix D: Class Four Outline

152

Appendix E: Class Four Resources

154

Bibliography

255

Curriculum Vitae

260

XI

List of Tables

Table 1 Table 2

xii

A Parent Support and Advocacy Program: ACCESSING CONNECTIONS Chapter 1: Introduction

As a professional whom works closely with children and their families on a daily basis, I chose to research and address the need for more accessible and comprehensive parent education, support and advocacy programs. I have been blessed with the opportunity to work with many families, service providers and organizations and have learned that unfortunately, most parents do not know where to go for help and many families have little understanding of what services are available for their children. Services can include organizations that provide therapy, family support and financial aid as well as advocacy training. During the eight years of my career, I have participated in parent education/support/advocacy programs and have observed that these programs are most effective and beneficial for families if they are utilized and understood. Increasing both the accessibility and comprehensiveness of parent support and advocacy education is needed due to the decreased accessibility and understanding of what is available in the community to families of children ages birth through five with special healthcare needs.

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I have found in the state of New Hampshire that organizations, that would provide this help to families, cannot promote their services very well due to poor funding and poor accessibility. The poor funding of these programs is a direct reason why they are not as well known and are underutilized. Services available in the community and the state need to be maintained and promoted, so that they can appropriately address families' needs. This project is important because it will provide a resource to assist parents in finding information and help in a timely manner, as well as provide assistance to existing organizations in promoting their programs. I have created a parent support and advocacy program called ACCESSING CONNECTIONS. ACCESSING CONNECTIONS is a series of classes that will address common concerns of families of children with special needs and ensure that parents are provided with understanding of diagnoses and developmental concerns, how to cope with diagnosis and disabilities, how to navigate healthcare and insurance, how to communicate with healthcare and insurance companies, how to connect with educational, community and state supports and how to interact with family members and maintain a sense of family. I will utilize expert presenters on these topics as well as provide question and answer periods after each class. The information included in the classes is supported by the literature. 2

The appendices of this paper include many resources that will be used in the programs. It is my hope that parents will find these programs helpful and also a way to form their own social support networks from meeting with others in the classes.

Chapter 2: Theoretical and Evidence Base to Support the Proposed Project

Throughout my work as an Occupational Therapist, I have found that there is a need for increased accessibility and a greater understanding of parent support and advocacy programs in the State of New Hampshire. Through past discussions with families of children ages birth through five with special healthcare needs, I have learned that parents feel that they are at a distinct disadvantage in their understanding of available supports and programs because they feel they have "limited access" to this information. They also feel less supported by medical professionals because there is a perceived lack of collaboration between disciplines (doctors and therapists) and that doctors and therapists in general lack awareness of what is currently available in the community. Regarding family needs, there is a perceived lack of understanding by the medical community, leading parents to feel unsupported in their quest to obtain help for their child. If parents do not know where to go for help, or if they

3

ask for help and do not get it, they cannot learn appropriate coping mechanisms to deal with what is happening to their children. ACCESSING CONNECTIONS will address a critical gap in service acquisition and delivery for New Hampshire area families of children with special needs. The program is meant to increase parents' understanding of state and community resources for children ages birth through five, with special needs and to help parents learn to advocate for their child by increasing understanding of their own family's needs. Participants in the program will be parents that have a child(ren) with a known diagnosis between the ages of birth through five and/or parents that have a child(ren) between the ages of birth through 5 with suspected difficulties or that have concerns regarding their child(ren's) development (Gross Motor/Fine Motor Delays, Socialization/Behavior difficulties, Feeding difficulties e t c . ) . I will be partnering with New Hampshire Family Voices, Gateways Community Services (Area Agency Region-6) and the Parent Information Center of New Hampshire to further develop this program. I want the project and my association with N H Family Voices to propel the state into further action to support parents and programs that are valuable for the wellbeing of our community.

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A. Current Methods of Parent Support:

To address the critical gap in service acquisition and delivery for New Hampshire area families of children with special needs, research was examined to note what methods have been used and what methods are currently in use around the country and the world to support parents in their journey. In the following paragraphs various methods of parent support will be presented such as peer support programs, community based support programs, support from medical professionals and care coordination services.

1: Peer Support Programs

Many parents have difficulty meeting the daily needs of their children effectively and there are many consequences that arise from these difficulties for both families and service systems. Often parents of children with special needs may lack the time needed to access resources, research what programs are available to them, attend programming and purchase needed items. Some parents may not be aware of their child's needs and/ or do not understand their child's needs. They may not understand typical development or what their child's diagnosis is, and how it can affect their child's growth and development. Parents of children with special healthcare needs also may lack coping 5

skills/mechanisms to deal with difficulties surrounding diagnosis, health and accessing services due to increased stress. Parent support programs and groups help to "provide a community of similar others that are trained to listen and be supportive and they also provide an opportunity for matched parents to experience equality and mutuality in their relationship" (Ainbinder, Blanchard, Singer, Sullivan, Powers, Marquis & Santelli, 1998, p. 99). It is also essential that the support programs provide information and assistance that is practical, resourceful, congruent with other aspects of care and use a team approach (McGill, Papachristoforou, & Cooper, 2005). Research has demonstrated that parent to parent support groups, community based (early intervention and pediatric medical care) as well as the use of family caregivers are programs that help reduce the stressors that parents face when they have a young child with a disability. Some of the stressors such as difficulty with acceptance of the diagnosis, adjustment to their child's medical or behavorial needs, adjustments for families needs, financial demands and limited or no accessible information about their child's disability (Ainbinder, et al, 1998), can be reduced with the understanding obtained from support groups.

6

Family support interventions appear to be highly endorsed in the literature as evidenced by Ainbinder, et al., (2002) and Chernoff, Ireys, DeVet, & Kim, (2002) who report that there were positive effects of their family support interventions. Chernoff, et al., (2002) studied the effects of providing new families (to the world of disabilities) with support from experienced parents and child life specialists that included telephone contact, face to face visits and attendance at special events and found that this helped to promote adjustment for families and children that had selective chronic health conditions. Ainbinder, et al., (2002), noted three components of a parent to parent support relationship that are essential: 1. the receiving parent of the program feels that his/her situation and that of the supporting parent are similar, 2. there are comparable situations for learning skills and gathering information and 3. there is availability and mutuality of support.

When one parent is a

"mentor to another they have to be eaisly accessible/available, they have to be percieved by the mentee as being in a similar situation to their own and parents that need the support want to know and understand that their feelings or situations are not abnormal" (Ainbinder, et al., 2002).

7

Positive outcomes that are obtained when participating in a parent to parent program include: parents gaining a feeling of normalcy, parents learning tips on how to manage day to day operations of their household and achieving increased feelings of empowerment (Ainbinder, et al., 2002).

2: Community Support Groups/Support from Medical Professionals

Community support groups such as those provided by Early Intervention programs and assistance from more experienced parents or child life specialists are especially important for families of very young children (Bailey, Hebbeler, Scarborough, Spiker, & Mallik, 2004 and Chernoff, et al., 2002). Early intervention programs are meant to provide theraputic services, support with finding medical care or other community programs, support for transition to school programs and helping parents to navigate the world of services from learning about insurance coverage to obtaining help with getting medical supplies (Bailey, et al., 2004). An issue that often arises in the state of New Hampshire is: What happens to those children who do not qualify for Early Intervention services because they did not demonstrate enough of a delay? Often these children and their families are given a few pieces of paper explaining that there are some programs to assist them. The programs featured on these

8

pieces of paper are not always discussed at great length and parents often feel lost and are afraid that they may pester their local agency if they call them repeatedly. In the end, calls are not made and parents become frusterated. Once this happens, the probability that parents will access further information is unlikely. This is why ACCESSING CONNECTIONS was created, to assist families in learning about what is available in their communities regardless of whether or not their children qualify for Early Intervetion services.

For those families with children that meet criteria to be enrolled in Early Intervention in this state, they receive much more information on local and state supports. Each family is always assigned a case manager or primary therapist who is a personal contact and this person helps to put them in contact with other families who might be in similar situations. Sometimes early intervention programs can even put parents in contact with child life specialists. Chernoff, et al., (2002) note that child life specialists and more experienced parents that provide telephone contact, face to face visits and attendance at special events are helpful for new families of children with special needs to cope more easily with their new found challenges and that children also adjust to their disability or chronic illness more easily.

9

Once a child is enrolled in Early Intervention services in the State of New Hampshire, the child's pediatrician and any other service providers are made aware so that the treating team and the early intervention team can work as a cohesive unit. The involvement of Pediatricians and Occupational Therapists as part of parent support teams or as advocates for children that needed certain services has also been supported (Hinojosa, Sproat, Mankhetwit, & Anderson 2002; Perrin, Lewkowicz & Young, 2000; Care Coordination: Integrating Health and Related Systems of Care for Children with Special Health Care Needs 1999 and The Pediatrician's Role in Family Support Programs 2001). Many families have also expressed the need to have doctors and other health professionals realize what it is like for a family to receive a diagnosis for their child and how the initial interaction with a professional can leave a lasting effect on a parent's ability to feel that they can successfully communciate with medical professionals (Graungaard & Skov, 2006). Webb (2005), shares in her study, the importance of parents feeling like they can provide a more normalized life for their child with special needs and other sibilings. This can be achieved through support groups, pediatricians having an understanding of the families' needs and the community being supportive and holding programs for children and their families. 10

3. Care Coordination Services

The use of Care Coordination (1999) services are also encouraged by the American Academy of Pediatrics to address the overwhelming need for parents to have one or two contact people out of a whole team to work mainly with to coordinate appointments, paperwork and funding for medically related programs. The services of care coordination should provide full access to needed health, education and social services for families of children with special needs. The use of medical and theraputic professionals as a part of care coordination teams for families of children with special needs has also been found to be an effective method in trying to provide parent support and advocacy education. Although this has been found to be effective, professionals feel that they need further education on how to support families in their quest for knowledge and services (Hinojosa, et al., 2002; Perrin, et al., 2000; AAP, 1999 and AAP, 2001). If professionals do not have an understanding regarding how to support families, this aspect is often missing from the care plan and parents can feel overwhelmed with having to find out information on their own. Families should feel that they are able to become the leaders in care coordination efforts for their child, with support from medical professionals. In addition, research should be done to

11

develop new approaches to coordinate care and interdisciplinary training should take place to educate medical professionals in this aspect of care.

B. Education Regarding Diagnosis

Parents need to be aware of health information regarding their child and in addition professionals need to be educated on how to help parents gain access to information and sometimes how to properly support them through their journey when they have a child with special needs. Research highlighted the need for both education for families and education for professionals in the realm of parent support and advocacy.

1: Education of Professionals

In a study by Perrin, et al. (2000), it was found that, pediatricians should be "more aware of the parents need for increased diagnoses-specific information. Pediatricians also need to be aware of community support programs and the need to arrange joint planning meetings with families of children with special healthcare concerns. Doctors should not underestimate parents needs for assistance and they need to understand financial barriers families might face in care" (Perrin, et al., 2000, p. 284). Health care practicioners, especially pediatricians, need to be aware of the increaseing numbers of families seeking 12

services for their children (AAP, 1999 & 2001). Doctors need to be prepared to have open and ongoing relationships with parents to facilitate discussions, monitor and guide development and address concerns (AAP, 2001). There were studies that indicated pediatricians were unaware of how often parents were interested in being involved in groups, as well as networking and counseling and that the pediatricians were less likely to identify a need for care coordination. This was something that was indeed shocking and has helped to shape ACCESSING CONNECTIONS into a program that will incorporate pediatricians and family practice doctors in the teaching of concepts to families to help encourage a positive relationship to be formed between parents and medical professionals. Professionals are also encouraged to engage in continuing medical education programs, to engage in shared decision making with families, to become involved in community programs addressing parent support and advocacy and to provide technical assistance to these groups.

Occupational Therapists always appear to be on the front line of educating families. We often have more time to spend with families than other medical professionals and we have a rich history in our profession of understanding psychosocial aspects of care. Even though we have training in psychosocial aspects of care and mental health, information was found throughout the 13

research indicating that Occupational Therapists felt that it was very difficult working with parents that faced multiple stressors. These multiple stressors include unstable family units, poor accessibility of parents by their children, increased parental stress, lack of financial resources, poor parenting skills and limited social interactions (Hinojosa, et al., 2002). These stressors impacted the effect of occupational therapy intervention for the children that were receiving services and impacted the role of therapists in family and parent education. These very stressors though, are what Occupational Therapists need to be able to address in treatment and another reason there needs to be a more comprehensive parent support and advocacy program available. Throughout the research there were specific recommendations for educating medical/theraputic professionals including developing collaborative partnerships with families and developing curriculum around learning to address family stress, limited social interactions and financial constraints (Hinojosa, et al., 2002).

2. Education of Parents

Parents continue to be frusterated with health systems, they express they felt like they are being given the run around by service providers and are uncertian about diagnoses and how to advocate for their child (Rodger and Mandich,

14

2005). Families continue to want help in the form of coordinated care, increased communication with primary care doctors and a family support system (Perrin, Lewkowicz, & Young, 2000). Education programs offered to parents should encompass information on how parents can make others aware of their needs.

Studies have been conducted to understand parents needs when their child has a specific diagnosis. Some of the diagnoses described in the literature include severe physical and mental disabilities such as Infantile spasms, Lissencephaly, Lumbar Meningo-myelocele, Wolf-Hirschorn syndrome and Down's Syndrome as mentioned by Graungaard & Skov (2006). Other authors researched families of children with disabilities resulting from Shaken Baby Syndrome and Seizure Disorders of unknown origin (Olson & Esdaile, 2000), Autistic characteristics, Chromosomal abnormality, severe Cerebral Palsy, life threatening abnormalities, faulty shunt issues and learning/behavioral disabilities (Pain, 1999), Cerebral Palsy (Raina, et al., 2005), Developmental Coordination Disorder (Rodger & Mandich, 2005) and Duchenne Muscular Dystrophy (Webb, 2005). The parents identified needs related to accessing services as well as information regarding their child's disability and receiving recognition that they understand their child's needs (Pain, 1999 and Rodger & Mandich, 2005). 15

According to Graungaard and Skov, (2006), many parents had difficulty coping with intial diagnoses of their children and dealing with the diagnostic process that is often highly demanding of time and financial resources. Parents in the studies mentioned above felt the overwhelming need to be supported by medical and theraputic professionals and to not be told they are imagining things are going wrong with their children. Being taught to use coping skills in dealing with everyday life and care for their children was a primary method of support. Coping was defined as " the constantly changing cognitive and behavioral efforts to manage specific external and or internal demands that are appraised as taxing or exceeding the resources of that person" (Graungaard & Skov, 2006). Some positive coping strategies included collecting information on diagnoses, learning new skills (such as how to interact with health professionals or learning new theraputic techniques to use at home), investigating alternative medicine and training possibilites as well as seeking second opinons. Using these coping strategies made parents feel more in control of their situation allowing them to change their feelings of hopelessness (Graungaard & Skov, 2006). If parents cannot cope well with situations they are in, or if they have mental health difficulties it impacts satisfaction with medical teams and services which can lead to feelings of inadequacy on the part of the parents. This can 16

hinder their ability to communicate effectively with medical or therapeutic professionals, therefore possibly creating a rift between them and medical professionals, further increasing the chance that their needs will not be met.

A study done by Ireys et al., (1996), provided tentative evidence that percieved availability of support and enchanced support decreases mental health symptoms while Mazurek et al., (1998) reported that mothers had a stronger belief in themselves regarding their ability to understand and predict their child's responses to hospitalization after they participated in parent support/education programming. Mothers in the Mazurek (1998), study reflected on the support they received to help them learn to decrease their stress levels and how to decrease feelings of being overwhelmed. This information supports the need for a program such as ACCESSING CONNECTIONS to decrease the stress that parents face when having a child with special needs.

C. Tools currently in use to support parents of children with special needs around the United States and World:

Parents that seek support in the physical sense from groups of people or medical professionals, could also benefit from utilizing tools to help support their children and family. The following studies from Blackburn & Read, (2005) 17

and Stewart, Law, Burke-Gaffney, Missiuna, Rosenbaum, King, Moning & King, (2006) promote the use of tools to provide support and advocacy strategies to help ensure that parents can independently obtain information and present it to their family members or medical professionals. The tools helped to increase effective communication therefore decreasing stress. Stewart, et al., (2006), demonstrated in their study how information about children with special needs is provided to and used by medical professionals and how this is a major concern to families. The authors created a tool called the Parent Information KIT. The kit is an "information management system and child advocacy tool designed to assist parents in getting, giving and organizing information regarding their child, in an effective way" (Stewart, et al., 2006). It includes strategies, tips and resources to teach parents how to organize their child's health and developmental information in an efficient way, therefore promoting their ability to be effective communicators of their child's needs. Through their research, Blackburn & Read, (2005) found that for some parents the internet is a viable and flexible medium for accessing useful information and services. For others that don't have access to the internet, information needs to be available and written in a way that others can understand it.

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Summary

Strengths of current approaches:

The most important components of the methods that have been found in the studies analyzed for this paper include encouraging parents to be team leaders in the care of their child and providing parents with means to communicate openly about their child with medical professionals and their families. Another important component of these methods that was found, was that the community should take part in supporting parents of children with special needs through the use of parent support groups, family activities and encouraging working with medical professionals by making the professionals and programs more accessible.

Parent to parent programs are known to provide support like no other group, because the assistance comes from peers who may be in the same situations as parents that are seeking services. The studies found, support the need for these programs and suggest that they could be effective for children with any chronic illness and implemented in a variety of settings because they are focused mainly on parents needs (Ainbinder, et al., 1998 and Chernoff, et al., 2002). Ainbinder, et al. (1998), also state, that in order to make these parent to parent support 19

programs even more beneficial there needs to be a quality control tool implemented to make sure that what is being provided to parents is monitored and thorough. Other important components of methods mentioned in articles to substantiate the effectiveness of parent support and advocacy programs are: that if there is increased education for medical and therapy practicioners regarding how to support parents of children with special needs, there will be more positive outcomes in relationships between parents and medical professionals (Hinojosa, et al., 2002). Products and services mentioned in the article for this project such as the parent information KIT and the use of the internet also have proven effective components to support parents and help them advocate for services. The parent information KIT (Stewart, et al., 2006) was effective because it was a single location (binder) that parents went to, to utilize and share information about their child with medical professionals when in appointments. It was something that was solely created by parents that assisted them, in learning more about their child and therefore increased the parents ability to better advocate for what they felt their child needed (Stewart, et al., 2006). Care coordination was another method that had components that were clearly effective in supporting parents and their ability to advocate for their children. Some effective strategies in care coordination services were as follows: parents 20

were encouraged to be team leaders in the care of their child, which served to increase their knowledge about their child and reinforced their ability to advocate and it also encouraged open communication with medical professionals therefore "leveling the playing field" (AAP, 1999).

All of the research both from the United States and around the world found for this project, demonstrate support for the increased need for parent education and advocacy programs. However, as will be discussed in the following section of this paper, the current parent programs based on the research fall short in their ability to provide information that all parents feel that they can benefit from.

Limitations of Current Approaches: It has been noted throughout the research that.a lack of evidenced based practices, unsophisticated approaches (just verbal advice and nothing written) and equality of access to help, all can impact parent perceptions of helpfulness (McGill, et al., 2005). The three primary shortcoming of methods noted in the research for this project are, that practices involving families and children need to be evidenced based, equally accessible and easily understood, by parents seeking them (McGill, et al., 2006). If these components are met, parents are more

21

likely to feel supported and better able to advocate for their children's needs. Also noted is, if practices are more evidence based, medical professionals will tend to favor those programs over ones that are not as well-proven to be effective. Parent to parent support groups, community based (early intervention and pediatric medical care) as well as the use of family caregivers, need further evidenced based research to be undertaken especially within the same state, the same geographical area of the country and in all areas of the United States. Evidenced based research should also be undertaken to compare programs in the United States and other foreign countries. Further research will clarify which programs work in various parts of each state or geographical area such as the northeast and how programs differ between countries and why they work. In the future, it would be ideal if each state and country that runs programs for children with special healthcare needs could communicate and work with one another to have similar support systems in place. With this further research, hopefully there could be a consensus to create programs that are very similar, so that when and if families move, they could have access to comparable programs that they are moving away from.

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It may also be beneficial for manualization of programs to occur, because it would ensure that the level of detail that permits treatment to be carried out in the same way across participants, therapists, and clinical sites (in a multi-center study), can be replicated in future research, and then the findings could be generalized to clinical use. The goal for this would be to ensure that programs in place can be more effective when utilized and that if a parent moved within a state or state to state or country to country they could expect a similar program (Hart, n.d.). If there were more programs that were manualized there may have been different outcomes noted in the research or there may have been similarities that could have been found in different programs around the country. The research for truly effective methods of parent support and advocacy specifically outside of the support of early intervention and pediatricians was difficult to find in the age ranges that were targeted for this project. It appears that in studies that were performed outside of the United States, the focus was more on products to support parents rather than groups that provided support. I think that there are certain barriers in all countries to properly support parent to parent programs due to cultural differences, different belief systems, different class systems and religions. Many families have different views on who should care for children with disabilities and who they will accept 23

assistance from. It is interesting to note that the use of products such as the Parent Information KIT (Stewart, et al., 2006) and the use of the internet (Blackburn, et al. 2005) were a popular method in foreign countries but were not fully researched or the research was not as easily accessed in the United States. There are barriers (stated mainly in studies in countries outside of the United States), to the use of the internet including financial ability to purchase a computer, decreased time to be able to use the internet due to needing to travel to a place to get service, difficulty with transportation to and from places with internet access and difficulty navigating sites for information.

Support for Proposed Program: Support for a program such as ACCESSING CONNECTIONS is positive, as evidenced by the literature and theories found for this research. There is strong positive evidence that providing early support, that is easily identifiable and accessible increases the likelihood that families are able to engage and/or reengage with the community and its services to benefit their child (Carpenter, 2007) and that parents can become better equipped to handle stress and anxiety in order to reach out for services that help them adjust to new challenges of raising a child with a special need (Pain, 1999). Engagement in social support networks, whether they are due to a planned group meeting (Ainbinder, et al., 24

1998; Ireys et al., 1996 & Rahi, Manaras, Tuomainen, and Hundt, 2004) or a naturally occurring support system (Cohn, 2000), are also effective for increasing emotional support that parents feel, which allows the parent to learn a great deal to help support their child and advocate for them. It is important to note that legally, assistance needs to be provided to families of children ages birth through five who have been found to require the support of early intervention programs. Part C of IDEA was formed to protect the rights of children aged birth to five year old and their families. According to the law, "Part C of IDEA was created to enhance the development of infants and toddlers with special needs, to reduce educational costs by minimizing the need for special education, to minimize institutionalization and maximize independent living and enhance the capacities of families to meet their child's needs" (Wrightslaw, 2008). By law the capacities of families to meet their child's needs has to be addressed and further supports the need for a comprehensive program like this to be available and supported by other professionals. The overwhelming positive evidence for programs and products mentioned is encouraging because I plan toimplement the use of the tool KIT, become involved in parent to parent support programs, and will bridge the gap with 25

medical professionals to increase coordinated care for children that I serve. It is important that Occupational Therapists learn how to support families and advocate for them (Hinojosa, et al., 2002).

Chapter 3: Proposed Program Description and Information

ACCESSING CONNECTIONS was designed to be a series of parent support and advocacy classes that would empower parents of children with special healthcare needs. The program will also provide parents with a resource guide of organizations that are available to lend support to families. The series of classes will be given in partnership with New Hampshire Family Voices. This partnership between New Hampshire Family Voices (NHFV) and myself was established in July of 2008 and is meant to also provide this organization with further referrals for their services. New Hampshire Family Voices (NHFV) is an organization that is run by parents that have children with special health care needs, multiple disabilities and mental health conditions. The program has many components, but the component that I find to be particularly helpful is a free lending library of over 2,000 titles of books, videos, and audio tapes with a specialty in children's books on specific conditions and disabilities, sibling

26

relationships, behavior and social issues. Parents are able to access these items via the internet or by mail.

NHFV is both grant and state funded and is a part of Family Voices which is a national grassroots organization. The national organization helps to provide information and education about ways to ensure and improve family-centered health care for children and youth with disabilities and chronic conditions. The Family Voices website contains information on their programs and how they serve the national population. There is a document on the website that presents a Summary of Data Reported to Family Voices by Family to Family (F2F) Health Information Centers (HICs) and Network Members July, 2003 through June, 2004 for 31 states across the country. The summary of data show statistics related to how many requests for information and assistance there were from both families and professionals and what types of information were sought by families and professionals. This document demonstrates just how important a program like Family Voices is in the 32 states that it is currently servicing as of 2008 and proves the need for New Hampshire's Family Voices program to rise above and beyond these statistics so that we can ensure the success of our own state's families (information from this document can be found in appendix C).

27

The development of ACCESSING CONNECTIONS, will involve two steps to address a critical gap in service acquisition and delivery for New Hampshire area families of children with special needs. These steps include: Distribution of a survey (to be done in June of 2009) to understand/identify the needs and concerns of local parents of children with special healthcare needs. This survey will assist in my understanding of what specific information parents are searching for and to find those parents that may be interested in attending programming. The families who will be invited to complete the survey will be identified through early intervention programs, pediatrician's offices, therapy clinics and current families that access N H Family Voices programming. (Please refer to appendix Bfor the survey) The development of a series of parent education classes with built in time during the classes to help parents create connections to social networks and resources in the state. Time will also be spent on helping parents increase advocacy skills. The proposed program will help families learn about community/state programs that provide support and advocacy training and will strive to empower families to become advocates for their children. Parent education classes will also strive to be culturally competent and relevant to 28

participants. Based on information obtained via surveys and phone calls, participants may be grouped by similar culture, same age children, same age parents, socioeconomic status etc.... The targeted population and criteria for identifying appropriate clients for my proposed program are as follows: •

Parents that have a child(ren) ages birth through five with a known diagnosis (such as Cerebral Palsy, Developmental Delays, Mental Retardation, Seizure Disorder, Genetic Disorders, Autism Spectrum Disorders etc..) or children with suspected difficulties or concerns regarding development (Gross Motor/Fine Motor Delays, Socialization/Behavior difficulties, Feeding difficulties etc...)

•

Parents that are referred by their child's pediatrician

•

Parents that want information from support organizations and/or advocacy organizations

•

Parents that are interested in meeting other parents that have similar needs

•

Parents living in the state of New Hampshire

•

Parents whose children are involved in early intervention 29

•

Parents of children not involved in early intervention but that have concerns about their child.

Parents do not need to meet all criteria to become involved in the program. Description of Proposed Program: The proposed program was created with the assistance of New Hampshire Family Voices. The classes were developed from the following website http://www.nhfv.org/Publications.html and the structure of each class was created based on feedback received from parents throughout my career, from documents on the website noted above and from feedback that NHFV receives on a daily basis. Documents used (via the above website) are as follows: •

Maneuvering Through The Maze 2008 Edition - N H resource guide of agencies, organizations and services.

•

Plugged In - a 67 page N H resource guide for young people with special health care needs or disabilities.

•

Quality Health Care for Children with Special Health Care Needs Outlines the principles that provide quality health care for children with special health care needs.

•

Tips On Handling Medical Appointments - For families who have 30

children with special medical needs. •

Medical Prescription Tips - Practical tips and questions to ask once a decision is made to prescribe medications.

•

Meeting Your Child's Health Care and Related Needs at School This brochure is to help families plan for their children's healthcare needs at school and to learn what role public schools have in addressing healthrelated needs of children with disabilities, chronic illnesses or other conditions.

•

Using Children's Literature - Learning to use literature to assist in the child's understanding of a chronic health condition or disability.

•

Planning for Medical Emergencies The purpose of this brochure is to help families think about how to plan for health emergencies or accidents that would affect their children with disabilities, chronic illnesses or other special needs.

•

Does Your Child with Special Health Care Needs have a Medical Home? - Learn about this new way of thinking around primary care.

•

Parent Participation - When working on a program or project, parent participation will bring a new depth and enrichment to the process. This brochure outlines some ways to reach out to parents and the supports 31

they may need to feel valued as full participants. •

Speaking Up For Yourself - Self advocacy tips for youths with special health care needs.

The classes that will be provided will address the following topics: Class One: Understanding of Diagnoses and Developmental concerns: 60-90 minute talk with 30-60 minutes of socialization after class with refreshments I will partner with a Pediatrician, Pediatric Nurse Practitioner or Developmental Specialist for this class so that answers can be given to parents who may have more medically based questions. I plan to utilize Dr. Duxbury who is in my circle of advisors if her schedule allows, if not I will meet with other pediatricians who may be interested in support and advocacy programs. Based on feedback from the informational surveys that are returned, I will: •

Provide information on diagnoses that parents need information on such as Cerebral Palsy, Mental Retardation, Genetic/Metabolic disorders etc...

•

I will also share information on child development with 32

parents who suspect their child has a delay. •

I will hand out developmental checklists so that parents can track their own child's development.

Class Two: How to cope with diagnosis and disabilities: (60-90 minute talk with 30 to 60 minutes of socialization after class with refreshments) I plan to co-teach this class with either a social worker or speech and language pathologist (the SLP is someone who has provided many different kinds of support groups in the past and is very well versed in communicating information to parents in a calm and gentle manner) or a parent from New Hampshire Family Voices. We will help parents to explore the use of: •

live parent support groups

•

online support groups

•

family support groups

•

play based therapy for parents and children

•

counseling

•

community support programs

33

Class Three: How to navigate healthcare and insurance: (60-120 minute talk with 30-60 minutes of socialization after class with refreshments) (this can be broken up into two classes if needed) I will co-teach this class with a professional who deals with insurance in outpatient practices. New Hampshire Family Voices has offered assistance to help me obtain the help of this type of professional. I will also provide handouts of all information covered. I will research insurance plans prior to this class and talk about the following topics: • what an insurance rider usually looks like • what insurance terms mean • how to talk to insurance companies about services • how to ask if certain programs/DME are covered by insurances • talk about whether or not they may need referrals for services • talk about flexible spending plans from their places of work if they are available •

talk about Medicaid programs, etc.... 34

Class Four: How to communicate with healthcare personnel and insurance companies: (60-120 minute talk with 30-60 minutes of socialization after class with refreshments) (outline of handouts for this class will be provided in appendix E)

I will partner with New Hampshire Family Voices to provide the following information:

•

How to create a personal health notebook/binder of their child's health and developmental information that allows easy access to information when it is needed to communicate with professionals

•

How to make concerns known to doctors and therapists, how to ask questions

•

We will provide ideas such as writing down questions prior to appointments

•

How to use a calendar to chart concerns

•

How to deal with wait times for appointments (if this is a concern)

35

•

How to obtain referrals for professionals you would like to have on your child's medical team

Class Five: Navigating the Resources: (60-120 minute talk with 30-60 minutes of socialization after class with refreshments)

I will partner with N H Family Voices to provide the following information:

•

We can talk about workshops that are provided that help with understanding what Family Centered Care and Medical Home consist of and how to collaborate with health care professionals

•

We can also talk about how to negotiate the resources available within New Hampshire Department of Health and Human Services, tertiary care centers and community hospital settings.

Class Six: How to connect with community and state supports: (60-120 minute talk with 30-60 minutes of socialization after class with refreshments)

I will co teach this class with N H Family Voices 36

•

I will create a running computerized list of organizations that would be good sources of information and services throughout the state with the organizations permission and provide this list to families and place it online

•

We will talk about how to interact with these agencies

•

Talk about how to obtain paperwork for services if needed

•

How to communicate with schools and daycares, etc....

Class Seven: How to interact with family members and maintain a sense of family: (60-120 minute talk with 30-60 minutes of socialization after class with refreshments) I plan to co-teach this class with a social worker or family support personnel and we will provide information on how to: •

Effectively manage family tasks/finances

•

How to make sure that all siblings needs are met if there are

siblings in the family •

How to maintain social life

•

Talk about respite programs

•

How to tell your family about your child's needs

•

How to communicate effectively with your partner and 37

family members •

How to involve family in your child's care

These classes are meant to be taught in person, but will also be recorded for future use. Information will also be available for families via the internet and in local pediatrician's offices. Respite care will also be provided to increase the number of parents that are able to participate in face to face classes. Research Support for the Proposed Program: When deciding how to meet the needs of parents of children with special needs ages birth through five, a search of the literature was undertaken, to find out what programs have been beneficial in the past and what ones have not. After research was completed, the program was developed. This program draws upon existing literature noted previously, is relevant to policies and systems that are in place in the state of New Hampshire and is feasible, relevant and scientifically sound. Collectively, the studies that are presented throughout this project highlight the need for parents to feel supported and educated about what their child's needs are. In addition to finding theories that support ACCESSING CONNECTIONS, research was completed on parental needs and stress, medical systems and legislative impacts. It has been found that parents' stress and needs 38

can be addressed rather appropriately through support groups, pediatricians having an understanding of the families' needs and the community being supportive and holding programs for children and their families.

Theoretical Perspectives used to Design the Program: In designing a program such as ACCESSING CONNECTIONS, that can address these unmet needs of families, several theories provide useful guidance. First, Bandura's Social Cognitive Theory emphasizes the "importance of enhancing a person's behavioral capability (knowledge and skills) and self confidence (self-efficacy) to engage in particular behaviors" (Baranowski, Perry, & Parcel, 2002, p.171-173.) The major tenets of this theory that directly apply to this project are observational learning, self efficacy and emotional coping responses. When a person is able to watch the actions of another person and the reinforcements that the person receives for performing actions or completing actions, observational learning occurs. Self efficacy relates to how confident the person feels when performing an activity and the confidence needed to overcome any barriers or issues to performing that activity. When a person can use different strategies to help them deal with situations that may not be favorable they are said to use emotional coping responses. Having the ability to use emotional coping responses helps with stress management when learning to 39

deal with difficult situations (Baranowski, et al., 2002). The tenants of this theory underscore the basic need for ACCESSING CONNECTIONS: To prepare parents to be effective in seeking out resources and/or advocating for their child they need support and the ability to make connections with others. Many parents learn how to seek out services and programs, feel more confident in their abilities and can better cope with stress and their child's needs, when they have someone to work with that is in a similar situation. Second, Heaney and Israel's theoretical perspective on Social Networks and Social Support was chosen to help explain how and why ACCESSING CONNECTIONS was created. Heaney and Israel define social networks as "the web of social relationships that surround individuals" and social support as "aid and assistance exchanged through social relationships and interpersonal transactions" (Heaney & Israel, 2002, p.187.) Heaney and Israel, (2002) emphasize the importance of understanding the characteristics of participants in social networks, as they (the participants) influence the quality and quantity of social support that is exchanged within a network. The typology presented in this theoretical perspective is that of "enhancing social network linkages, developing new linkages and training of supportive persons" (Heaney & Israel, 2002, p.197.) 40

This theoretical perspective and typology can help to explain why it is important for ACCESSING CONNECTIONS to provide parents with a built in social network and social support relationships. The typology promotes education on how to provide parents with skills to help them learn to provide social support to another person, to create mentor/mentee relationships between parents and to help them to identify those who could help them in their own community. ACCESSING CONNECTIONS plans to promote local community groups to show parents, that there are people to contact in the community to help with any needs they may have. Third, the Transactional Model of Stress and Coping was used to develop ACCESSING CONNECTIONS, because it helps to evaluate the processes of coping with stressful events (person-environment transactions). These transactions are the impact of an external stressor or demand on a person that is mediated by the person's understanding of the stressor and the resources he or she needs to combat that stress (Wenzel, Glanz and Lerman, 2002). When faced with a stressor, in this model, "a person evaluates the potential threat (primary appraisal), their ability to alter the situation and manage negative reactions (secondary appraisal) and use coping efforts that are aimed at problem management and emotional regulation which help to provide outcomes of the 41

coping process"(Wenzel, et al., 2002, p. 212.) This model helps one understand how stress impacts a parent's ability to change his or her thought processes and how stress impacts areas of daily functioning. ACCESSING CONNECTIONS hopes to provide parents the ability to use these appraisal techniques to cope with stress by providing parents with information and ways to address any issues they may face. If parents can move through the stages in this model the end result would be that they are more optimistic about their situation and they become more interested in seeking out information to help their families rather than being bombarded by stress. Finally, Interdependence Theory (Kelley and Tibault, 1978 & Rusblat and Van Lange, 1996) was chosen to support the ACCESSING CONNECTIONS program because it is a dyad level social psychological theory that explains how influence and communication affect behavior by taking into account the outcomes experienced by interacting partners (Lewis, DeVellis & Sleath, 2002). Since the program is based on interactions between all different types of people, it would be important to understand the three key tenets of this theory: Relationship Interdependence, Interdependence and Correspondence of Outcomes. This theory explores structural characteristics of a relationship that bring people closer together or drive them apart. How people influence each 42

other's experiences or the effects an individual exerts on another person's motives, preferences, behavior and outcomes and also how interacting partners should be included in interventions that usually target individuals is explored. The theory also examines the degree to which interacting partners agree about the shared or joint outcomes in a relationship. Better outcomes occur when partners are fully cooperative with each other in determining the desired behavior. The level of agreement between partners in a relationship can help focus attention on important values, motivations, and barriers to behavioral change. With the use of this theory, health educators can focus on skill building, increasing knowledge and maintenance activities to retain information and skills of participants in programs (Lewis, DeVellis & Sleath, 2002). During the programming that will be provided through ACCESSING CONNECTIONS, it is a goal that parents can form their own social support network, during facilitated times at the end of each presentation. It is also a goal, that through guidance from the interdisciplinary presenters, that parents will be assisted in focusing on how to be a resource for one another, how to help one another increase their knowledge and help them set goals for their newly formed partnership with one another. 43

Current Programs in place in the State of New Hampshire:

Research was also undertaken to learn about programs that are already available in the state of New Hampshire.

The following is not an exhaustive list of what is available at this time:

Ten Area Agencies

Developmental Clinics

Parent Information Center

Early Intervention Programs

State Medicaid Office

Easter Seals Programming

New Hampshire Department

Beaureau of Special Medical

of Health and Human Services

Services

Family support groups

Hospitals

New Hampshire Family Voices

Therapy Clinics

All of these programs appear to have a vested interest in supporting parents in their quest for further information regarding their child and community/state programs. The programs mentioned above usually provide handouts of various programs to parents and always have staff members available that are able to talk to parents about what may be available in the state of New Hampshire.

44

Some of the issues found with the utilization of these programs above are funding, where in the state the programs are located, waiting lists for services, changes at the state level for eligibility of programs and parents lack of understanding that these types of programs are available. ACCESSING CONNECTIONS is different from the individual programs stated above as it is meant to be a comprehensive program that provides parents with information regarding what services are available (some of which are stated above) to their child and their family and helps to encourage families to become advocates for their needs. The New Hampshire Family Voices Program and Area Agency Region 6 (Gateways Community Services) have a vested interest in ACCESSING CONNECTIONS as they have stated that they will provide support in the form of space to hold programs, will help to provide professionals to speak to class members, will allow me to use information they have put together previously and will also help with monetary funding. Potential Barriers and Challenges I have learned about potential barriers and challenges to the implementation of my proposed program from both personal and professional knowledge. The following table, Table 1 represents potential barriers or challenges and what I propose to do to help them not become insurmountable barriers. 45

*».

ON

contact is kept with them so that any potential

their programs and what has worked for

the above mentioned groups (such as

to work with me?

information to aid in presentations.)

time, space to hold classes and

I was able to obtain commitments from

Will the organizations have time

them.

their services and to make sure that regular

share information with me regarding

their programs?

problems can be addressed.

organizations well in advance of needing

least 3 organizations that are willing to

share information regarding

My plan is to continue to approach the

becoming more difficult?

What is the plan to prevent challenges from

I have found that currently there are at

How they are currently being addressed?

Will organizations be willing to

Challenges that were present

Barriers and Challenges to Proposed Program

Table 1

VI

At the present time, three organizations will help coordinate the program. One organization is in an adjacent town and two are in the capital of the state. New Hampshire Family Voices will be my

Will a parent organization be

secured to help coordinate the

program within the geographical

area that the program will be

available?

Informational surveys will be mailed out and current programs that provide services to children age's birth through five with special needs will be contacted to secure participants in the program.

There will always be parents that want the education being provided. The issue that always arises with this type of programming is obtaining the commitment from the families or reaching out to families.

want the education provided by

the program? What strategies

would be best to use to obtain

information from families to

participate in this program?

organizations is important.

participate. Active communication with these

change hands or no longer want to

jeopardy especially if the organizations falter,

At anytime these partnerships could be in

becoming more difficult?

What is the plan to prevent challenges from

Will there be parents who will

main parent organization.

How they are currently being addressed?

Challenges that were present

GO

more families can be reached.

program and the program may need to be held in many different locations in order

the group classes?

as options when providing this type of program in order to meet everyone's needs.

videotaped? Should there be a

website with information on it?

information

of talks? Should classes be

can be developed to help gain

parent's homes?

I believe that all of these should be made

on where to hold classes.

the best place is to hold classes; surveys

medical office, hospital, or

Should there be paper handouts

based agencies and asking for their opinions

the first set of classes to determine what

community center, school,

this will be explored further.

to be able to present these types of options, so

The program needs to have a budget in place

maintaining communication with community

places to hold the program as well as

These will be explored prior to the start of

A survey will be distributed to find out best

The classes will be videotaped and the

Should classes be held at a

for it to be successful.

information will be placed on the internet so

This will always be a challenge for the

Where would it be best to hold

becoming more difficult?

What is the plan to prevent challenges from

How they are currently being addressed?

Challenges that were present

feedback questionnaires are returned.

stress on families in the form of trying to get to classes, trying to absorb all the

to families?

they interact with on a daily basis to support each of the classes

workers, parents, Occupational Therapists, Physical Therapists and Speech Pathologists are some disciplines that would be best to present this information.

to present information for the

topics that have been chosen?

What disciplines would be best

to present information?

with contact information for providers that

concern. NHFV plans to provide the program

providing assistance with this specific

Social workers, pediatricians, insurance

New Hampshire Family Voices plans on

This will be an area more adequately explored

Will expert presenters be willing

prove to be stressful.

networks and listening to others could

information presented, creating social

after the first series of classes given and

Classes could possibly put increased

Will these classes increase stress

becoming more difficult?

What is the plan to prevent challenges from

How they are currently being addressed?

Challenges that were present

o

Ol

Respite care can possibly be provided with the help of local day care programs and or students enrolled in college courses related to early childhood education, special education

Yes, childcare should be available so that more parents can participate in the program (this is currently an issue in programs currently available)...

Should childcare be available?

Is personal money utilized?

analysis/budget should be formed

What will costs be?

fundraising would important

Personal funding will not be used. Exploration of

created to build parents packets of information,

r

copies of pertinent information that has been

, . . . c JJ i. in obtaining funding and cost

Should grants be written?

r

NH Family Voices has already agreed to provide

New Hampshire Family Voices will assist

Funding for project?

placements.

or different therapy fields as part of their field

becoming more difficult?

What is the plan to prevent challenges from

How they are currently being addressed?

Challenges that were present

All of the potential barriers and challenges described could affect the outcome of my project, but many things will not be known until the project is closer to completion. This also may not be an exhaustive list of potential barriers or challenges. Chapter 4: Evaluation Plan Both Implementation evaluations and Summative evaluation will be conducted for ACCESSING CONNECTIONS. According to Love (2004), implementation evaluation assists with, " identifying and meeting the needs of consumers, delivering high quality programs, continually improving services, applying evidenced based practice, demonstrating accountability for achieving the outcomes and using performance measures to bridge the gap between planning and program implementation." For ACCESSING CONNECTIONS, Implementation Evaluation will assist in documenting program activities such as classes, parent support groups formed and relationships parents have formed with other programs due to the education provided. It will also assist in providing evidence that the program is being delivered as described and that any changes are documented. This documentation can be presented to potential stakeholders for future development of the program. There are four stages to

51

Implementation Evaluation (Love, 2004) and questions to help develop an Implementation Evaluation are included: •

Stage 1: Assessing the Needs and Feasibility of the Program: In preparation for designing ACCESSING CONNECTIONS an

implementation research review (stage 1) was undertaken to synthesize relevant research, to identify the implementation variables (what is the best way to reach parents to give them this information, where is the best place to hold sessions, what are the things that parents will need or ask for in classes? Etc...) associated with the program's success or failure and it helped me to synthesize methods and use them rather than reinventing the wheel (Love, 2004). I was able to identify key words related to the population I wanted to serve, the purpose of ACCESSING CONNECTIONS and the model of the program. A literature review using computerized library searches/internet was undertaken; articles were reviewed for their relevance to my proposed program and how I wanted the program to be implemented. I met with community and state resources to determine needs and based the project on this information and personal/professional knowledge. The following questions were asked or looked at in this stage: What are the needs of the parents that have sought out ACCESSING CONNECTIONS Education Program? Were similar programs ever 52

attempted? What were the obstacles to their success? What resources are needed to make ACCESSING CONNECTIONS successful? Stage 2: Program Planning and Design: Especially because of the state of the economy in the nation at this time, I need to be able to implement an effective and efficient program that is evidence based. I want this program to be responsive to my target group of parents of children ages birth through five with special needs and provide the outcomes to this group that I am proposing throughout this project. A logic model has been created that will depict the intended outcomes of the program and what steps or activities will be undertaken to ensure the success and implementation of the program. A logic model is a brief diagram that will show a picture of how I predict ACCESSING CONNECTIONS working to help meet its intended goals. A cause and effect relationship among resources, activities and outcomes will be demonstrated. I would want to make sure that the logic model is clear to all that need to be able to understand it as depicted on page 54 (Love, 2004).

53

On

Resources ' > •Partnerships with 3 large state organizations that support parents of children with special needs • In kind financial support is available to the program • Presenters from many disciplines will participate • New Hampshire Family Voices will provide needed start u p costs • Multiple facilities available for program

Activities'^ • Developing educational programming for parents •Information packets will be distributed to families and sessions will be recorded for future use •Selection of staff to teach and be part of the program •Forming partnerships with state and community organizations •Implementing the program to first cohort of individuals •Develop an internet related database of information parents can access

Outputs i= :£> • This program provides parent support and advocacy education to parents of children with special needs/suspected needs, between the ages of birth through age 5 • This program provides opportunities to increase participation in social support networks • Participants are provided with the tools to gain knowledge in the areas of support and advocacy

Short Term Goals c = S •Participants of this program will become knowledgeable about community and state resources •Participants will be able to access at least 3 community resources for support • Participants will demonstrate increased confidence in their skills to advocate for their child and will tell one story about how they advocated successfully for their child's needs • Participants will be able to engage in a parent support system and retain support after the program has ended

Impact Long Term Goalsc •Participants of this • The program will program will apply strengthen and skills and information broaden the parents learned knowledge of how to • Participants will advocate for their child report back each year •The program will regarding what help them obtain changes have been information needed for occurring in their life their child's care and in response to the to help them form their program own social support • First group of networks. participants returns to • Social support program to facilitate networks will help new support networks parents to carry over for current participants their learning to of the program benefit their child and their family • Previous •Participants will participants provide maintain their ability information to the to advocate for their database, of area child and remain an services and will help active participant on update it their child's team.

Problem Statement: The program was designed to address the need for more accessible and comprehensive parent education, support and advocacy programs for parents of children (birth through 5) with special needs/suspected needs Theoretical Perspective: Bandura's Social Cognitive Theory, Heaney and Israel's theoretical perspective on Social Networks and Social Support, Transactional Model of Stress and Coping and Interdependence Theory

Table 2 Logic Model: ACCESSING CONNECTIONS

Stage 3: Program Delivery Stage: Data obtained throughout the program on participants enrolled, participation in activities, type and intensity of services, use of services and participation in support groups will be collected to help confirm whether or not the program delivery was faithful to the plan for the program. Coverage Analysis will be completed to provide information about acceptance of the program by the target group and the extent of their participation. It will help ensure accountability that the target population is reached by the program (Love, 2004). I would also want to make sure that I analyzed data regarding the characteristics of the target population to determine if the participants are really in need of the program so that responsible use of the resources for the program occurs. I would also want to examine any bias occurring in the program. Component Analysis will be employed to help identify any contextual, structural or environmental factors that could impact program development or participation and collect and use data to ensure that the program was implemented the way it was intended to (Love, 2004). Record keeping will be important for this program and it will help to provide immediate feedback regarding how the program is progressing and what impact it has on the participants. Questions asked related to this stage are: Is the program serving the right mix of parents? Are parents rejecting the 55

program or not continuing in the program and why? Is the program being delivered as planned? If no, why? Is the program moving towards achieving its objectives? What obstacles are being encountered? •

Stage 4: Program Improvement Phase;

Evaluation of the program will be continuous to help improve the design of the program, to modify the program and to strengthen services. Client feedback will also be important and essential to guide further program development and feedback will be obtained through feedback at the end of each session, then six months post program, one year post program and yearly after that. Questions asked related to this stage are: Is the program achieving its goals? What are the strengths of the program? What are the weaknesses of the program? Is there anything external to the program that is affecting its goals? What can be improved? Summative evaluation will be utilized upon the completion of the program because, the overall goal of ACCESSING CONNECTIONS is to educate parents about the services that their child (ren) can access to improve their life, health and family time. This type of evaluation will be completed so that policy makers, funding sources or potential adopters of the program, clearly understand the benefits generated by ACCESSING CONNECTIONS as well as the costs and 56

essential conditions necessary to gain the benefits. I would like to use the data obtained to provide evidence for the outcomes as well as to inform potential clients who might benefit from adopting or continuing to use the program. In order to obtain qualitative data, I would formulate questions for an evaluation of the program, regarding the adequacy of the classes in meeting the needs of the participants, what the parents felt the level of the experience of the instructional staff was and if they thought they were helpful, the appropriateness of the skills or information being taught; and finally, evaluation questions may relate to the extent to which parents are meeting the objectives set forth by the instructional program. Data collection instruments recommended include questionnaires/surveys, interviews, focus groups or other assessment measures (Sullivan-Soydan, 2008). Summative evaluation is very important because it "provides documentation that program services are providing what they state they are going to provide, and that the program can be justified for future funding" (Sullivan-Soyden, 2008). Questions that I want to answer overall are: Have the parents learned what they were supposed to after participating in the classes? Are the classes helping and teaching what they were supposed to?

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I would like to employ at least the two following approaches for evaluation of my program: Objectives-oriented approaches - the focus is on making clear the goals and objectives and measuring how the program has done in reaching them and Participant-oriented approaches -program participants and stakeholders are the key sources of both questions and the information to answer the questions. The following evaluation areas: Relevance (refers to whether the program or service is needed), Progress (refers to the tracking of the activities), Efficiency (refers to whether the program results could be obtained less expensively), Effectiveness (refers to whether the program results meet predetermined objectives) and Impact (refers to the long-term outcomes of the program) may be helpful to utilize as well.

Outcomes from evaluation of the program would help to guide further cohorts, it would allow me to understand if I am meeting the needs of parents with the classes, if I am reaching out to the right parents and if parents can use information I am providing to them. If for any reason any of these answers are negative, I will be able to find out why and address it to improve ACCESSING CONNECTIONS and I will be able to make it more accessible to the general public.

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Chapter 5: Conclusion:

ACCESSING CONNECTIONS is significant to the pediatric population and their parents, because it will be a program that will address the common needs of parents of children with special needs in one place. It will be a program that will be able to address diversity, culture and all levels of literacy. I will work with already existing programs to promote their services and encourage parents to interact with programs that will support their needs. ACCESSING CONNECTIONS will also provide parents with a database of information that they could reuse at any time and it will also provide them with a built in social support network. Many parents of young children with special needs may also appreciate that the classes will be recorded and available for future use as well in-case they are unable to attend. This program promises to be supportive of parents needs while providing them with the tools to manage the care of their children therefore allowing them to be the parents they want to be.

Future objectives of program:

Future objectives of this program are to assist existing organizations in promoting their programs and addressing the issue of referral for state and community based services by healthcare professionals. My initial project that is 59

explained in detail above will hopefully be a springboard for future action in areas of practice and the community that need to be addressed. I would like to have Accessing Connections become part of a resource and referral center that ultimately works for the families of children with special needs/suspected needs and the community to provide the highest level of care for our children.

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Chapter 6: Funding Plan

ACCESSING CONNECTIONS is a series of parent education/support classes that will address common concerns of families of children with special needs/suspected needs and ensure that parents are provided with understanding of diagnoses and developmental concerns, how to cope with diagnosis and disabilities, how to navigate healthcare and insurance, how to communicate with healthcare and insurance companies, how to connect with educational, community and state supports and how to interact with family members and maintain a sense of family. I will utilize expert presenters on these topics as well as provide question and answer periods after each class. It is my hope that parents will find these programs helpful and also a way to form their own social support networks from meeting with others in the classes. ACCESSING CONNECTIONS will address a critical gap in service acquisition and delivery for New Hampshire area families of children with special needs. The program is designed to increase parents' understanding of state and community resources for children ages birth through five and to help parents learn to advocate for their child by increasing understanding of their own family's needs. I will be partnering with New Hampshire Family Voices, Gateways Community Services

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(Area Agency Region-6) and the Parent Information Center of New Hampshire to further develop and disseminate this project.

The development of ACCESSING CONNECTIONS, will involve two steps to address a critical gap in service acquisition and delivery for New Hampshire area families of children with special needs. These steps include: Distribution of a survey (to be done in June of 2009) to understand/identify the needs and concerns of local parents of children with special healthcare needs. This survey will assist in my understanding of what specific information parents are searching for and to find those parents that may be interested in attending programming. The families who will be invited to complete the survey will be identified through early intervention programs, pediatrician's offices, therapy clinics and current families that access N H Family Voices programming. (Please refer to appendix Bfor the survey)

The development of a series of parent education classes with built in time during the classes to help parents create connections to social networks and resources in the state. Time will also be spent on helping parents increase advocacy skills. The proposed program will help families learn about

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community/state programs that provide support and advocacy training and will strive to empower families to become advocates for their children. Parent education classes will also strive to be culturally competent and relevant to participants. Based on information obtained via surveys and phone calls, participants may be grouped by similar culture, same age children, same age parents, socioeconomic status etc... AVAILABLE LOCAL RESOURCES

•

Facilities for classes: facilities to hold classes will be provided free of charge by either New Hampshire Family Voices or Gateways Community Services for the first year of the program. After the first year, rentals of rooms or payment for space will be needed.

•

Volunteer Meeting/Training Room: will initially be provided by New Hampshire Family Voices and Gateways Community Resources. After the first year of the program, space may need to be purchased or rented for a fee.

•

Volunteer Coordinator (half time position 50%): this person is currently on the staff New Hampshire Family Voices or Gateways Community

63

Services and therefore their salary will be paid for by their current place of work •

Volunteers for program: local colleagues will be instrumental in providing information for participants throughout the first year of the program. They will be provided with gift cards of $50.00 each time they present information, but after the first year of the program payment for their services will be rendered.

•

Initial Supplies for first cohort of program: initial supplies such as binders, paper handouts, pens, markers and hole punchers will be donated to program.

•

Website for program: website will be linked to sites by N H Family Voices and Gateways Community Services.

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NEEDED RESOURCES

•

Personnel: During Year Two of the program (second cohort), two part time staff and six part time presenters will be needed. The two part time staff would be the director of program and an assistant to the director. Six part time persons would be those presenting information to parents

•

Facilities: Community Meeting Place (to be determined) rental fee could be approximately $300.00

•

Equipment:

•S Chairs and desks for one to three offices (the use of desks and chairs will be free for the first year of the program) S Chairs and tables for a large classroom/community meeting space (the use of a large classroom or meeting space will be free for the first year of the program) •S Chalk board/White board (the use of a whiteboard/chalkboard will be free for the first year of the program) •S Notebook computer/printer (the notebook computer used will be my current computer and the printer that will be utilized will be free of charge) 65

S Video recorder (the video recorder used will be my own) •S Photocopier (for preparation of informational educational material, paper and ink will be free for the first year of the program)

•

Supplies: Paper, pencils, chalk, markers, binders, highlighters (initial cost is donated to program)

•

Communications: phone charges (donated to program through use of phones from New Hampshire Family Voices and Gateways Community Services), postage (44 cents per letter x 1,000 letters)

•

Materials Preparation: printing of handouts and family education binders will be free of charge for the first year

•

Travel for personnel: volunteers will not be paid for travel time during first year of program, but will receive a $50.00 gas card after the program has ended ($50.00 x 6 volunteers)

•

Cultural competence training: payment to 6 volunteers to take training ($25.00 gift card each) and payment for presenter ($100.00 gift card)

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Budget -

•

Year 1 - Development of Operation of program before and during initial cohort phase

S Personnel

Project Director

Time is donated

$0.00

Assistant Director

Volunteer from New Hampshire

$0.00

Family Voices or Gateways Community Services

Expert Presenters (6) Volunteers will receive gift cards $50.00 each for their participation in presenting information during classes

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$300.00

Project Evaluator

Doctoral Student will volunteer

$200.00

time and will receive a gift card

Development/Production of Educational Materials (Free of cost for first year of program)

Development of Advertising/Promotion (Free of cost for first year of the program except for postage)

Postage

1,000 mailings to prospective participants

44 cents/mailing

$440.00

Other:

Gift cards for cultural competence training

6 at $25.00 and 1 at $100.00

$150.00

Gas Gift cards for volunteers

$300.00

YEAR ONE TOTAL = $1390.00

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Year 2 - Operation/Maintenance

of Program

NEEDED RESOURCES

•

Facilities for classes to include Volunteer Meeting/Training Room: New Hampshire Family Voices or Gateways Community Services will be paid $300.00 a month for rental of their space to include an office and meeting space furnished with chairs, desks, tables, whiteboard.

•

Director of Program (half time position $20,000.00 salary for 12 months)

•

Assistant Director of Program (half time position at $10,000.00 salary for 12 months)

•

Class Presenters: local colleagues will be instrumental in providing information for participants throughout the program. They will be provided with a $1000.00 stipend for the year.

•

Supplies for second year of the program: binders, paper, pens, markers, and hole punchers will be donated to the program.

•

Website for program: website will be linked to sites by N H Family Voices and Gateways Community Services and this will be paid for through the monthly rental fee.

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•

Notebook computer/printer: The notebook computer used will be my current computer and the printer that will be utilized will be paid for by part of the monthly rental fee.

•

Video recorder: The video recorder used will be my own

•

Photocopier: For preparation of informational educational material (paper and ink) will be paid for through monthly rental fee.

•

Communications: Phone charges (donated to program through use of phones from New Hampshire Family Voices and Gateways Community Services), postage (44 cents per letter x 1,000 letters).

•

Materials Preparation: printing of handouts and family education binders will be paid for by the monthly rental fee.

•

Travel for personnel: volunteers will not be paid for travel time during the second year of the program, but will receive a $50.00 gas card after the program has ended ($50.00 x 6 presenters)

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Budget -

•

Year 2 - Operation of Program

S Rental Fee

$3,600.00

•S Personnel

Project Director

$20,000.00

Assistant Director

$10,000.00

Expert Presenters (6)

Presenters will receive a

$6,000.00

$1,000.00 stipend for their services throughout the year

Project Evaluator

Doctoral Student will receive a stipend for their time

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$1,000.00

Development/Production of Educational Materials (cost is included in the rental fee per month)

Development of Advertising/Promotion (Free of cost for first year of the program)

Postage

2,000 mailings to prospective participants

44 cents/mailing

$880.00

Other:

Gas Gift cards for volunteers

$300.00

YEAR TWO TOTAL = $38,180.00

This budget will be funded by grants, donations and possible state funding.

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Potential Funding Resources:

The following are programs and grants that would be beneficial to explore to help fund ACCESSING CONNECTIONS

S United Way of Greater Nashua, New Hampshire: This agency could potentially fund parts of ACCESSING CONNECTIONS through monetary donations •S New Hampshire Family Voices: This agency could potentially fund parts of ACCESSING CONNECTIONS through monetary donations •S Gateways Community Resources: This agency could potentially fund parts of ACCESSING CONNECTIONS through monetary donations •S Statewide Early Supports and Services: This program at the state level could fund ACCESSING CONNECTIONS as statewide program that would be funded through their dollars

S United States Department of Health and Human Services Grants/ Maternal and Child Heath Bureau grants/Title V Block Grants

These grants would help to provide funding to ensure that ACCESSING CONNECTIONS can provide programming to families that will lead to an 73

increase in access to health care, that would provide an increased ability for community organizations and health professional to develop programs for families that were positive in nature and that would allow families to participate in education sessions to become informed partners in decision making efforts for their child.

o Healthy Tomorrows Partnership for Children Program (HTPC) grant

o

Family/Professional Partnership-Children with Special Health Care Needs Program (CSHCN) grant

o Family/Professional Partnership- CSHCN and Family Opportunity Act grant o

Cooperative Agreements for Comprehensive Community Mental Health Services for Children and their Families, funded through the Substance Abuse Mental Health Service Administration (SAMHSA) grant

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S Brendan and Liam Shanahan Foundation

This organization that was formed by a longtime friend and classmate is willing to provide support and funding to ACCESSING CONNECTIONS participants to enroll in parent education and advocacy training.

S University of New Hampshire Institute On Disability Program

It will be important to obtain faculty/student support for ACCESSING CONNECTIONS to assist with writing grants and performing research for program longevity. It would also be helpful to learn how ACCESSING CONNECTIONS can utilize funds from the United States Department of Health and Human Services Administration for Children and Families since the Institute on Disability is part of the University Centers for Excellence in Developmental Disabilities, Education, Research and Service grant funding program.

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Chapter 7: Dissemination Plan

ACCESSING CONNECTIONS is a series of parent education/support classes that will address common concerns of families of children with special needs/suspected needs and ensure that parents are provided with understanding of diagnoses and developmental concerns, how to cope with diagnosis and disabilities, how to navigate healthcare and insurance, how to communicate with healthcare and insurance companies, how to connect with educational, community and state supports and how to interact with family members and maintain a sense of family. I will utilize expert presenters on these topics as well as provide question and answer periods after each class. It is my hope that parents will find these programs helpful and also a way to form their own social support networks from meeting with others in the classes. ACCESSING CONNECTIONS will address a critical gap in service acquisition and delivery for New Hampshire area families of children with special needs. The program is meant to increase parents' understanding of state and community resources for children ages birth through five and to help parents learn to advocate for their child by increasing understanding of their own family's needs. I will be partnering with New Hampshire Family Voices, Gateways Community Services

76

(Area Agency Region-6) and the Parent Information Center of New Hampshire to further develop and disseminate this project.

The development of ACCESSING CONNECTIONS, will involve two steps to address a critical gap in service acquisition and delivery for New Hampshire area families of children with special needs. These steps include: Distribution of a survey (to be done in June of 2009) to understand/identify the needs and concerns of local parents of children with special healthcare needs. This survey will assist in my understanding of what specific information parents are searching for and to find those parents that may be interested in attending programming. The families who will be invited to complete the survey will be identified through early intervention programs, pediatrician's offices, therapy clinics and current families that access N H Family Voices programming. (Please refer to appendix Bfor the survey) The development of a series of parent education classes with built in time during the classes to help parents create connections to social networks and resources in the state. Time will also be spent on helping parents increase advocacy skills. The proposed program will help families learn about community/state programs that provide support and advocacy training and will 77

strive to empower families to become advocates for their children. Parent education classes will also strive to be culturally competent and relevant to participants. Based on information obtained via surveys and phone calls, participants may be grouped by similar culture, same age children, same age parents, socioeconomic status etc... DISSEMINATION GOALS: LONG TERM GOALS

1. By disseminating ACCESSING CONNECTIONS, the State of New Hampshire would be provided with a reputable resource for parents to use, for services and assistance, whether or not their child qualifies for early intervention services. 2. By disseminating ACCESSING CONNECTIONS, specialized services provided throughout the State of New Hampshire to children ages birth through five with special needs will be highlighted and further utilized therefore strengthening service delivery and funding for services.

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SHORT TERM GOALS:

1. Implementation of a new and comprehensive program in the State of New Hampshire. 2. Increased knowledge and awareness of programs in the state by families, therapists and other organizations therefore increasing referrals to these services.

TARGET AUDIENCES: Primary audience is parents of children ages birth through five with special needs or suspected needs.

Secondary audience is organizations providing services to children with special needs throughout the State of NH as well as doctors and therapists in all disciplines

KEY MESSAGES: Primary Audience: 1. ACCESSING CONNECTIONS is a culturally competent and culturally relevant program that provides assistance (for advocating, obtaining specific services and forming social support networks) to families of children with special needs/suspected needs ages birth through five 79

2. Participants will be grouped for education/support programs based on their choice to be involved in specific groups related to culture, ethnicity, educational level, language spoken in the home, marital status and age of parents/children specific groups versus non specific groups

3. Participants will be afforded the opportunity to form their own social support networks throughout the education courses and they will be groups that parents can choose to continue to be with long after the education classes are completed.

Secondary Audience: 1. ACCESSING CONNECTIONS will assist organizations already formed with disseminating their products to families of children ages birth through five with special needs/suspected needs, thereby increasing referrals to programs already in place.

2. ACCESSING CONNECTIONS will maintain a database that will be easily accessible by organizations and families to use as a resource to obtain services for specific needs.

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SOURCES/MESSENGERS: Representatives from both New Hampshire Family Voices and Gateways Community Services will be influential spokespersons for this program especially for the primary audience. I have already partnered with these agencies to provide the education classes and they are already in contact with many other organizations that would benefit from ACCESSING CONNECTIONS promoting their unique abilities to help families of children with special needs.

Expert presenters will be influential spokespersons for the secondary audience as they will be colleagues that could be involved in community agencies and groups that will be participating in ACCESSING CONNECTIONS.

DISSEMINATION ACTIVITIES, TOOLS/TECHNIQUES, TIMING, & RESPONSIBILITIES

PRIMARY AUDIENCE: PARENTS Written information: •S Brochure (to be created by August, 2009) •S Article in local parenting magazines, newsletters to be placed in doctors' offices/therapy offices (to be created by August, 2009)

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Electronic media: S Web site linked to Gateways Community Services and New Hampshire Family Voices (developed by September, 2009) •S Pod cast/Talkshoe program (developed by myself and other presenters by October, 2009) S Video tapes of classes for rental (developed by staff and available after first cohort of program is complete by September, 2010) projected official start date of program to be January, 2010) •f Televised on community channels (group effort to start during second cohort in January, 2011) Person-to-person contact •S Workshops/education classes (by myself and presenters, throughout each cohort) •S Phone calls (by myself and presenters, throughout each cohort)

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SECONDARY AUDIENCE: Organizations providing services to children with special needs and or suspected needs, throughout New Hampshire as well as doctors and therapists in all disciplines

Written information: •S Brochure (to be formed by myself by August, 2009) •S Article in local parenting magazines, newsletters to be placed in doctors' offices/therapy offices (to be written by myself by August, 2009) Electronic media: •S Web site linked to Gateways Community Services and New Hampshire Family Voices (developed by September 2009) •S Pod cast/Talkshoe program (developed by myself and other presenters by October, 2009) •S Video tapes of classes for rental (developed by staff and available after first cohort of program is complete by September, 2010) projected official start date of program to be January 2010) S Televised on community channels (group effort to start during second cohort in January 2011) 83

Person-to-person contact •f Workshops/education classes (by myself and presenters, throughout each cohort) •S Phone calls (by myself and presenters, throughout each cohort) •f Class to be offered to community personnel/therapists/doctors on how to refer parents and families for services, how to help parents advocate for their needs, how to form positive partnerships with families, how to work with families going through difficult times (to begin simultaneously with first cohort of parent program) BUDGET: The budget includes the needed materials for both audiences

•

Development of Advertising/Promotion $18,000

EVALUATION:

WRITTEN MATERIALS: will send out short surveys with Likert Scales and short narratives to participants of the programs (both parent programs and community/therapist programs) to obtain feedback on how the written materials 84

provided had an impact on how easily parents were able to understand the material presented. The surveys will be sent out after each cohort of participants. A successful outcome of the survey will be 90-100% positive responses on returned surveys with feedback indicating that parents were able to easily understand written material.

ELECTRONIC MATERIALS: will send out short surveys with Likert Scales and short narratives to participants of both programs to determine the impact of this method of dissemination. These will be sent out after each cohort of participants. A successful outcome of the survey will be 90-100% positive responses on returned surveys with feedback indicating that parents were able to easily understand electronic materials

EDUCATION CLASSES: will send out short surveys with Likert Scales and short narratives to participants of both programs to determine the impact of this method of dissemination of information for ACCESSING CONNECTIONS. These will be sent out after each cohort of participants. A successful outcome of the survey will be 90-100% positive responses on returned surveys with feedback indicating that parents were able to attend classes and benefitted from all materials.

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Appendix A: Annotation #1 Ainbinder, J. G., Blanchard, L. W., Singer, G. H., Sullivan, M. E., Powers, L. K., Marquis, J. G., et al. (1998). A qualitative study of parent to parent support for parents of children with special needs. Journal of Pediatric Psychology, 23,2, 99-109 Study Focus: The purpose of this study was to examine qualitatively the experiences of parents participating in a Parent to Parent support program. Parent to Parent support programs offer assistance (in the form of social support) to parents and match them in a one to one relationship with a veteran supporting parent, who has a child with a similar diagnoses and need. Training is typically is provided to the supporting parent on support techniques and how to offer information and emotional support to his or her referred parent. Parent to parent support is meant to decrease documented stressors including: difficulty accepting and adjusting to their child's disability, financial demands for necessary medical equipment and care, limited or no accessible information about their child's disability, time management conflicts, appropriate respite care and other services to relieve their caretaking activities (p.99). Methods: This study was completed by investigators in New Hampshire, North Carolina, California, and Kansas. Three hundred and forty parents of children 86

with special needs were randomly sorted by computer into two total groups, one by site and one by whether they felt the program (Parent to Parent) was helpful. Of these parents, 38 names were randomly selected to be contacted about participating in the study and 24 parents responded favorably. Parents included 23 mothers and one father ages 22-51 (M=37). Eighty three percent of the parents were Caucasian and 17% were African American. Children's age ranges were 116 (M=7), with 38% under the age of 5. Children lived at home with a wide range of disabilities. Twenty-one semi-structured telephone interviews (using a standardized interview guide) were completed by one person trained in psychology research that was not a parent of a child with special needs or associated with the program. Recorded interviews lasted between 15 and 45 minutes and were transcribed. Interviews were coded using an interactive process in which themes were identified from reading the transcripts of the interviews. Many different iterations of the coding were used to analyze factors that kept the parent to parent program from working. It was not clearly indicated as to what the final coding system was but the final system was assisted by the program HyperQual. Results: A successful parent to parent match for the program relied on the idea of a "reasonable ally" in the supporting parent. A "reasonable ally is comprised 87

of four main components: perceived sameness, situational comparisons that enable learning and growth, round the clock availability of support and mutuality of support (p. 103). Logistical barriers of the program identified were parent's busy lives, long distances between parents/difficulty paying for phone bills, lost phone numbers and negligent supporting parent follow-up. Parent to parent support was found to create a "community of similar others trained to listen and be supportive". It was noted that there needs to be quality control in the management of the parent to parent program specifically from improved matchmaking and follow-up efforts in the parent to parent support groups. Increased program funding to cover phone costs of parent contact was found to be needed. It was also found, that a program like parent to parent support should be supported by pediatricians and family doctors who can encourage parents to look for support and contacts. Critique: Strengths: The sample was randomized and represented a large geographic area of the United States (NH, KS, NC and CA). Other strengths were that parents perceptions of services was paramount and that the findings supported the importance of equality and mutuality that successful supportive relationships that lead to self worth and empowerment of parents (p. 107). Limitations: The sample was very small, with only one father included. The 88

coding system was not clearly stated and it was not clearly stated, which parents came from which state or where successful parent to parent programs are located to learn information from.

Relevance to Project: This study supports the use of parent-to parent support programs. Thirty eight percent of the children in the study were under the age of 5 with a wide range of diagnoses and severity which matches my targeted population. I hope to create parent to parent support groups by fostering socialization during my parent education classes. This article specifically helps me to understand what parents are looking for when matched with another parent. I also hope to include both parents in the groups and classes, I would like to know how fathers feel when they are involved and it has led me to want to specifically interview fathers that participate in my programs to have a better understanding of their feelings.

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Annotation #2 Chernoff, R. G., Ireys, H. T., DeVet, K. A., & Kim, Y. J. (2002). A randomized control trial of a community based support program for families of children with chronic illness: Pediatric outcomes. Archives of Pediatrics and Adolescent Medicine, 156, 6, 533-539.

Study Focus: The purpose of the study was to develop, implement and evaluate child outcomes of a 15 month community based family support intervention, that was designed to reduce the risk for poor adjustment and mental health problems in children with one of four illnesses (diabetes mellitus, sickle cell anemia, cystic fibrosis or moderate to severe asthma) and their mothers. Methods: The study was a randomized, controlled clinical trial design with multiple measures of mental health based on both child and parent reports, taken one year apart. Children ages 7-11 with the above listed chronic conditions and 136 mothers were enrolled and randomly assigned to the experimental or control groups. Data was collected in 45-90 minute face to face structured interviews at base line and 12 months later. The setting of the community based 15 month intervention was linked to 11 subspecialty clinics and 5 general pediatric and practices. The intervention/experimental group titled "family to family network" was designed to reduce the risk for mental health problems via 90

an intervention that had 2 components. One component called KIDS was designed for enhancing mental health, adjustment and self esteem in children with chronic illness and was implemented by 3 child life specialists (CLC's). The other component focused on the mothers and a selected trained group of veteran "experienced mothers of older children". This group was called Network Mothers - NM. This component focused on the use of regular phone contact (initiated by the Network Mothers) and weekly meetings for the experienced mothers to provide support to the new parents to go over significant issues that the mothers or children may be facing. A Pediatrician and social worker also attended the meetings to provide support to the team. The mothers that participated in the control group were given phone numbers of experienced mothers to use if they wished. The parents supporters had no specific training, didn't initiate phone calls and the children did not participate in the KIDS program mentioned above. Main Outcome Measures include Personal Adjustment and Roles Skill Scale (PARSIII), Children's Depression Inventory, The Revised Children's Manifest Anxiety Scale and 4 subscales of the Self Perception Profile for Children to assess mental health, anxiety and stress of children and mothers.

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Results: At the end of the study 72 families were in the experimental group and 64 families were in the control group. Bi-variate analyses indicated that the effect of the intervention was more pronounced for those children who had low self esteem at baseline. A child's ability to adjust to their chronic illness increased in the experimental group, especially if the children initially had low self esteem. This study demonstrates that "family support intervention has modest positive effects on the adjustment of children with selected chronic illnesses, and was similar across the board for all diagnoses mentioned" (p.538). Critique: Strengths: The sample was large and sufficient for reasonable statistical power and it was a randomized trail design completed in the United States. Limitations: The sample may not be representative of the broader population of families of children with chronic health problems because of selection bias. The study did not include assessment of the mental health of fathers and siblings. Many of the families received a low dose of the intervention and the potential influence of the intervention may not be well represented. Relevance to project: Many children and families that deal with special needs have increased stress and difficulty coping with outcomes of disabilities and chronic conditions. Coping strategies and the needs of the children and families could be further explored as part of my project. The importance of this study was 92

that both the experimental and the control group were given the opportunity to form parent support relationships that helped them to deal with advocacy and needs issues. Although the study was mainly about mental health needs, the information is applicable, because I have to look at all the needs of the families and children that would benefit from services. This study has given me a greater understanding of the multifaceted work needed for my project. I also need to be mindful that the children participating in this study did not match the age range included in my project, so the information gleaned from the article should be taken into consideration and I should be aware that the needs of my targeted population may be different.

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Annotation 3

Stewart, D., Law, M., Burke-Gaffney, J., Missiuna, C , Rosenbaum, P., King, G., et al. (2006). Keeping It Together (tm): An information KIT for parents of children and youth with special needs. Child: Care, Health and Development, 32,4, 493-500.

Study Focus: The purpose of the study was to develop and evaluate a Parent Information KIT. The KIT is an "information management system and child advocacy tool designed to assist parents in getting, giving and organizing information regarding their child, in an effective way" (p.493).

Methods: Draft one of the KIT was pilot tested with 21 parents and 9 service providers in 2 communities in Ontario, Canada. It was designed for parents of children and youth with special needs ages birth-21. Questionnaires and focus groups were used to evaluate the use of the tool and parents satisfaction with it. Based on the findings of draft one, a second version of the KIT was developed that included recommendations of how to put it together and better ways to utilize it. The KIT (Keeping It Together) was evaluated a second time by a sample of 440 parents. The main outcomes of use, utility, impact and the perceptions of family centered care were measured at baseline (time 1), after 16 months (time 2) and after 15 months (time 3). Complete data was collected from 94

439 participants at time (1), 268 at time (2), and 206 at time (3). Interviews were completed by an independent evaluator for 20 parents over 6 months of use of the KIT and perceptions and further suggestions for the KIT were explored. The KIT includes a customized binder with a manual of strategies, tips and resources such as record keeping forms in an accordion style folder. This KIT helps to teach parents how to organize their child's health and developmental information in an effective way, therefore promoting a family's ability to be effective communicators of their child's needs. Results: The first draft of the KIT yielded results of overall satisfaction with its design and utility for parents and for service providers. The organization, ease of understanding, ease of use and relevance of the KIT for families and their children was paramount. Results of the impact questionnaire found that parent's perception of their ability, confidence and satisfaction when using the KIT improved significantly. Parent's perceptions of service provider's care also increased considerably. The final model of the KIT demonstrated parents perception of the use and utility of the KIT had a low to moderate positive effect on the perception of the impact (.31) and a moderate positive effect of perception of the KIT on participants perception of care (.52). Increased use/utility of the KIT led to significant changes in perceptions of care such as increasing parent's 95

engagement with service providers (p.499). Results indicate parents were using the KIT in a many situations and in several different systems such as healthcare, education and social services. Use of the KIT also assisted families in finding new resources as well as providing increased advocacy skills. Parents stated that the KIT would be of "great use to parents of children newly diagnosed and are just entering the service system" (p.498). Critique: Strengths: Positive outcomes of the KIT directly related to the significant increase in parents perceptions of their ability and self confidence in getting, giving and using information related to their child's care and needs. Limitations: The two biggest limitations were the before-after design of the evaluation because it did not allow for comparison with families who did not use the KIT and the attrition especially from time 2 to 3. Those that did not continue in the study felt they did not have time to set the KIT up properly. Relevance to Project: The increased need for parent support, a way to communicate better with medical and therapeutic professionals, the need for increased knowledge of their child's diagnosis and the need to maintain and use information related to their child to assist in arranging and receiving services were common themes found not only in this study but in other studies highlighted throughout the article. These common themes are applicable to my 96

doctoral project because they highlight common issues for parents and can help me to provide a program that can make access to services easier. I now understand that when I try to introduce this type of organizational strategy, I need to make sure that there is education behind what I am doing or the families may not be invested enough to go through with a program. I also need to keep in mind that the children participating in this study did not match the age range included in my project so this information should be taken into consideration and I need to also be aware that the needs of my targeted population may be different.

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Annotation 4 Hinojosa, J., Sproat, C. T., Mankhetwit, S. P., & Anderson, J. M. (2002). Shifts in parent-therapist partnerships: Twelve years of change. American Journal of Occupational Therapy, 56, 5, 556-563. Study Focus: The purpose of the study was to "identify occupational therapists' current attitudes and values in the working relationships with parents of preschool children with developmental disabilities after 2 decades of legislative support and educational efforts" (p.556). In 1987 (original survey) Occupational Therapists working with parents of children with cerebral palsy did not believe that basic professional education had adequately prepared them for working collaboratively with families or in counseling parents of children with disabilities. Methods: Surveys were sent to a random sample of 400 Occupational Therapists from the Developmental Disabilities Special Interest Section of the American Occupational Therapy Association. Surveys returned represented 46 states, the amount of them returned equaled 327 and only 199 therapists identified themselves as currently working in preschool settings. Demographic differences among respondents were analyzed using chi-square analysis for independence at the alpha level of .05. After calculating descriptive statistics for 98

each item in the survey a one-way analysis of variance (ANOVA) was performed for 4 demographic variables (OT's age, place of practice, years in pediatrics and degree attained) to determine whether total scores on the survey differed significantly on the basis of the independent variables. Results: Demographic information of OT's participating in the research: 61.2% of respondents had a BSOT degree 36.7% had an MSOT degree and 1% had a doctoral degree, 38.1 % worked in preschools, 12.7% worked in private settings and 12.7 % worked in home based therapy and female respondents equaled 97%; For OT's attitudes towards working with parents: many OT's felt that they worked best with parents who were invested in their child's progress and most reported that they considered working with parents to be an important aspect of OT intervention. Many therapists (72.5%) reported that their professional education adequately prepared them to work with parents, 76.6% felt that working with parents has a greater impact on children than any other aspect of intervention and 59.4% believe that therapists do not have enough time to spend with parents; For OT's perception of the attitudes, concerns and needs of parents: The highest ranking parental concern about a child's progress was related to ambulation @ 49.5% and speech and language concerns rated as the second highest concern. Many OT's (29.7%) ranked parents having difficulty 99

adjusting to their child's disability as an issue during interactions with them, and 26.6% of therapists felt that it was the child's progress in therapy that parents ranked as a high priority; For OT's roles with parents and issues: It was found that 30% of time in a therapy session is usually spent directly related to parent concerns during a visit. It is also important to explore parental goals, help parents understand therapist roles, provide information about the abilities of the child and instruct parents on home programs as well as to provide support and information on advocacy programs and support programs. Difficulties and satisfactions that arise from therapists working relationships with parents: Dealing with parent denial, unrealistic expectations and an inability to recognize child needs ranked high in score of being difficult challenges therapists face. Another theme was parental noninvolvement (parents often expected others to assume care of their child and they did not follow through with recommendations). The most satisfying aspects of working with families that were identified were: that parents often placed trust in therapist's professional judgment and in the parent therapist relationship, increased parental empowerment, parental appreciation of services and parent acceptance of child's disability.

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Critique: Strengths: The study explored occupational therapists (OT's) feelings regarding working with parents of children with special needs and how well OT's feel they are prepared to take on this role. Limitations: A small sample of therapists replied to survey and test retest reliability was not done, therefore results of the study were limited to therapists' interactions with parents, mainly mothers of preschool children. Findings could not be generalized to the vast majority of children with special needs that were not in preschool. I was also unaware of what states were included in the study therefore it may not be applicable to my area.

Relevance to Project: This study is applicable to my project, in so that I can be cognizant of how therapists feel when presenting information to parents. This study will also help me, when I try to plan a class for professionals regarding parent support and advocacy. Understanding the results of this study will allow me to prepare a lecture for therapists and other professionals on how to provide support and advocacy.

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Annotation 5 Rodger, S. M. (2005). Getting the run around: accessing services for children with developmental coordination disorder. Child: Care, Health and Development, 31,4, 449-457. Study Focus: The purpose of the study was to gain a greater understanding of the experiences of parents of children with DCD in accessing services and in turn to provide/alert healthcare professionals to the importance of listening to parent concerns and allowing them to express their worries/fears. Methods: A qualitative design incorporating in-depth interviews, phenomenological approaches and criterion sampling was used (all participants met the same criteria of having accessed services for a child with DCD). Parents of 10 children that ranged in ages from 7-12 years with the diagnosis of DCD were interviewed. The children attended Kids Skills Clinic at the University of Western Ontario and were referred there by their parents, teachers, doctors or psychologists. The Movement Assessment Battery for Children was used to assess all children and they all had scores that put them below the 15th percentile. Parents also completed a demographic questionnaire that indicated difficulties in relation to academic skills and activities of daily living. All children engaged in 10 sessions of therapy based on cognitive orientation to daily occupational 102

performance. At later stages of the therapy one or both parents were interviewed (12 in total 10 mothers and 2 fathers) and asked 3 questions: "What brought you to the clinic? What sorts of motor performance difficulties did you observe and Why do you think it is important that children are able to do these things" (p.450-451). Credibility, transferability, dependability and confirmability were all taken into account with the rigor of the study. Results: Results were broken down into two terms: common participation problems experienced by children with DCD that led parents to seek referral and services and the parent's journey to access services. Common participation problems included, general clumsiness, mixed/uneven motor skill development, difficulties participating in play and leisure activities, difficulties with self care skills (especially dressing/ eating/ organization), gross motor skills, missed social opportunities/decreased ability to keep up with friends, fine motor skills and difficulties with handwriting. Parents were often frustrated with the health and educational systems as there seemed to be several overall themes such as their feelings being trivialized, they felt they were going at it alone and that they were given the run around by service providers. Parents also felt that the schools did not recognize medical feedback; they felt that teachers tried to explain away their children's difficulties and that DCD is usually not treated in the school system. 103

Parental advocacy appeared to be a critical factor enabling these parents to find appropriate services. Critique: Strengths: Recommendations were included to assist parents that are attempting to access services and to help them specifically to advocate within the school system. The study reviewed both parent's needs and the needs of the child and explained that without advocacy, parents would not be able to get as far as they have in trying to get DCD recognized by the school systems. Limitations: There was a small sample of parents and children in the study, it only reflected one diagnosis and the age group was older than what is intended for my project. Relevance to Project: "Between 5%-10% of school aged children have motor difficulties consistent with Developmental Coordination Disorder (DCD) that affect performance in ADL's, sports, leisure activities and school work. Involvement in these occupations is critical to development of self esteem, self efficacy and social adjustment" (p.449). Parents often found it difficult to navigate both healthcare and the educational system to find a diagnosis and appropriate interventions/services for their children. This study assists me in understanding the need to obtain life stories of those that I want to teach about how to advocate for their children. I also need to understand what families are 104

dealing with at home as well as when trying to access services in the community. I need to learn this information to help me gear my classes towards talks that would be beneficial to parents. Even though the study had limitations it gives me an understanding of what parents may be facing as their child gets older and will allow me to create a transition class from ages 5 and up with greater confidence in what parents might need in order to face the challenges head on with confidence.

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Annotation 6 Perrin, E. C , Lewkowicz, C , & Young, M. H. (2000). Shared vision: Concordance among fathers, mothers and pediatricians about unmet needs of children with chronic health conditions. Pediatrics: Official Journal of the American Academy of Pediatrics, 105,1, 277-285. Study Focus: The purpose of the study was to: "determine the extent and characteristics of agreement among mothers, fathers and physicians regarding the unmet needs of particular children with chronic health conditions and their families and to investigate the factors associated with greater or lesser disparity among different participant's perceptions of these needs" (p. 278). Methods: "Eleven pediatricians from 5 practices throughout Massachusetts participated. Families were identified via billing records for the two years prior to the study and a range of diagnostic codes using the ICD-9 Coding System were used to obtain participants. Chronic health conditions were defined as a condition that had lasted or was expected to last more than 1 year or more, and that could be expected to require made for the study more than the usual amount of medical supervision" (p. 278). There were 4 diagnostic subgroups: children with respiratory condition only (i.e. asthma, otitis media), neurologic condition only (i.e. cerebral palsy, seizure disorder, mental retardation), children with a 106

wide variety of other conditions such as diabetes, cardiac conditions and orthopedic issues and a group of children with either a neurological or respiratory condition in addition to a different chronic condition identified in the 3 rd group. Billing data identified 234 children as having a chronic health condition and 163 provided informed consent as well as demographic information and were enrolled for a 70% participation rate. Children ranged in age from 2 months to 15 years with an average of 6.78 months of age, 48% were female, 33 children had multiple conditions, 25 had a primary respiratory condition, 39 had a neurological condition and 22 had a variety of other conditions.

Results: Mothers and Fathers reported a high level of agreement about the severity of their child's condition and the number and types of needs that were insufficiently met independent of the diagnostic category. The only consistent disagreement between them was mothers had a greater desire for social contact with other families facing the same issues such as using a parent to parent program or family voices organizations. Parents who rated their children as more severe indicated a larger number of needs. Despite a high level of concordance with pediatricians there were consistent differences between parent's views and doctors. Doctors rated severity of illnesses as greater but the 107

extent of children's unmet needs as lower than parents. The pattern did not differ by condition or diagnostic category. Pediatricians did see the need for more information to be given to families whose children have more severe conditions that impact the families the most. Pediatricians were unaware of how often parents are interested in being involved in groups, networking and counseling and were less likely to identify a need for care coordination. Critique: Strengths: Various statistical methods were used to obtain information. Recommendations were made for families and their primary care physicians to be centrally responsible for identifying, obtaining, coordinating and monitoring a wide range of services for children with chronic health conditions. The article also highlighted that care coordination is challenged by scheduling and finances. It gave a suggestion to make systematic and universal arrangements for financial risk adjustment and modification in the organization of practice systems to help families by providing more comprehensive care for children. Limitations: The sample 70% was drawn from a group of pediatricians with particular interest in the care of children with chronic health conditions in one state and cannot reflect a standard of care for general practice. The study may not accurately identify the true population of children with chronic conditions and their families. 108

Relevance to Project: In relation to my project the data from this research indicated the need for "pediatricians to be more aware of what families of children with chronic health conditions need and suggested that a mechanism needs to be found to integrate regular communication between parents and doctors about a family and child's long term needs" (p.283). As I plan my parent education classes this is something that I can speak to my interested organizations about possibly finding a way to incorporate into practice. If parents feel supported by medical professionals they may be more likely to seek support from others and have it be beneficial., I am now more aware of needing to look at a number of practices in the state of New Hampshire and in more than my surrounding towns of parents to gain information that I may need for my project. I want my project to be well rounded and reflective of the needs of the state rather than a few small towns.

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Annotation 7 Graungaard, A., & Skov, L. (2006). Why do we need a diagnosis? A qualitative study of parents' experiences, coping and needs, when the newborn child is severly disabled. Child: Care, Health and Development, 33, 3, 296-307. Study Focus: The purpose of the study was to investigate parents' reactions when first realizing their child's disability, the impact of the diagnosis and parents' ways of coping with their child's needs. In addition another purpose of this article was to address initial experiences with health professionals and how they interact with families. The article also highlighted parents' wishes and needs for communication, which supports parent support and advocacy at all levels. Methods: Longitudinal interview study of 16 parents (8 couples) of severely disabled children, all interviewed (1.5-2 hours in duration) twice and audiotaped, simultaneously recorded and transcribed verbatim. The first interview was at least 3 months after the initial disclosure of the disability and the second 2 years later. An interview guide was used that included main themes of parents perception of the diagnostic process and disclosure, parents ways of managing practical and emotional demands in the initial phase, parents perceptions of their child, of the consequences for their future life and parents ways of mobilizing 110

resources. All data from the interviews was approved by the participants. Recruitment was in cooperation with doctors of the pediatric department and neonatal ward as well as the department of clinical genetics and the National University Hospital Copenhagen, Denmark. Eleven suspected severely disabled children were invited to participate and 8 remained in the study that were between the ages of 1-27 months at the time with the majority of them in the 1-10 month old age range. Only parents of children with inborn severe mental and physical disabilities that were recently diagnosed were included in the study. Results: The main finding of the study was that parent's experiences and possibilities for coping when realizing that their newborn child is disabled are strongly influenced by the nature of the diagnostic process and the certainty of the stated diagnosis (p.299). Five main themes were identified that were of central importance in parents experiences and they were: creating future images, identifying possibilities of action, perceiving the child and communicating with health professionals as well as implicit expectations of the healthcare system. It was also understood, that the fathers and mothers in the study were not always at the same point on the emotional scale at the same time which could have impacted communication. Parent's coping strategies identified in the study were: problem focused such as collecting information, learning new skills and seeking 111

training as well as emotionally focused such as retaining hope, seeking social support and creating future images. Under the theme identifying possibilities of actions, many parents felt uncertain as to whether the training offered by healthcare and social systems was enough and often felt a lack of support in their own efforts to stimulate their child. The parent's needs for communication as shown in the results are consistent with other findings that parents prefer a proactive and individualized service plan to be in place. Critique: Strengths: Validity of the findings was secured using the Grounded Theory method and coding was validated by the two authors as well as the interviewees. The age range of population explored in study directly related to my doctoral project as did the five main themes of the study. Limitations: Items that impacted the quality of the study were as follows: unbalanced representation of interviewees in terms of educational level, socioeconomic status and geographical location as well as exclusion of parents of foreign origin. Relevance to Project: It is important to realize that first impressions of healthcare experiences are very important to families of children with special needs. As health professionals we need to understand and provide support for families going through the diagnostic process. It is my hope that the classes I provide families include support that the parents identified in the main themes 112

of the study. The limitations of the study are important to take into account when I am setting up my classes and presentations. I need to make sure I am providing families with relevant information in a clear and concise manner, which is easily understood. I need to make sure that the area of the state that I hold my presentations in is located centrally to where many people need these services.

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Annotation 8 Bailey, D. B., Hebbeler, K. P., Scarborough, A. P., Spiker, D. P., & and Mallik, S. P. (2004). First experiences with early intervention: A national perspective. Pediatrics: Official Journal of the American Academy of Pediatrics, 113, 4, 887-896. Study Focus: This purpose of this planned longitudinal study was to ascertain families' initial experiences in determining their child's eligibility for early intervention, their interactions with medical professionals, the effort required to obtain services and their interactions with professionals. Methods: A 3 stage stratified sampling procedure was used to identify the sample for the study in which 20 states were identified to participate as well as 37 counties per state. Children were selected, who were enrolled in EI between September 1997 and November 1998 and were less than 31 months of age when the initial Individualized Family Service Plan (IFSP) was begun. A total of 3338 families agreed initially to participate in an interview that covered a variety of topics including characteristics of the child, characteristics of the family, the early identification process, initial services being provided and perceptions of the early identification and EI experience 16 weeks into services for the family. Only 2974 initial interviews were completed within the 16 week timeline so this is what the results of the research are based on. 114

Results: It was found that most children were eligible for EI services because of Developmental Delay (62%), with 22% eligible due to a diagnosed condition with a high probability of resulting in delay and 17% were eligible because of more than one risk factor being met. First concerns for families seeking EI services were expressed at 7.4 mo of age. Children were first diagnosed with difficulties at 8.8 months, EI services were first sought at 11.9 months, with referral to EI programming at 14 months and the IFSP was developed at 15.7 months. About 86% of families discussed their concerns regarding their child within the first month of their birth with the pediatrician and found them to be a source of support, 22% said medical professionals were somewhat helpful and 12% said that the doctor was not helpful at all. Approximately half of the respondents indicated that it took no effort at all to find EI services, 43% found that once they were enrolled no effort was required to obtain further services, 11% of participants said a lot of effort was required to find out about services and 9% reported that it took a lot of effort to get services started once they were identified. Families (76%) felt that their child was getting the right amount of therapy and 82% felt that they were getting the right amount of EI, but 1 in 5 respondents indicated that their child was getting less therapy than needed and 13% reported that their child was getting less EI services than needed. A small 115

percentage of families experienced difficulty in accessing services and feel that the amount of services received is inadequate and ~l/5 of the families were not aware of the written plan for goals and services. Critique: Strengths: The study is unique because it is the first to reflect parental perspectives and can be said to reflect the state of the nation (at the time) on the variables presented. It also demonstrated that ethnicity, income and education level were associated with less favorable experiences and suggests the need to develop models, practices, and professional skills that are more supportive of the entire array of families who need access to EI and its delivery system. Limitations: The findings are based on a few questions conducted in a phone survey and the study only includes families actually enrolled in EI programs. It was hard to ascertain what states were involved in the study and that the states can interpret Part C of IDEA differently therefore there are changes in how hard or easy it is for a child to be awarded services. Relevance to Project: Only about 1.8% of children ages birth through age 2 and - 5 % of children ages 3-5 receive special education or early intervention services in the United States. There is considerable variability across states in the nature and extent of services provided. Families of young children with disabilities are

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eligible for early intervention (EI) services as mandated by Part C of the Individuals with Disabilities Act.

This article and its findings are important to my project because of the age range assessed and that families were asked specific questions that would spark interest in them to find out more information regarding their child and level of services being received. I also felt that I had a better understanding of families and their needs related to early intervention and that I can possibly tailor my parent courses around what is known already, what is not known and what families can do to become involved in EI process.

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Annotation 9 McGill, P., Papachristoforou, E., & Cooper, V. (2005). Support for family carers of children and young people with developmental disabilites and challenging behavior. Child: Care, Health and Development, 32, 2,159-165. Study Focus: This purpose of this study was to gain information from parents of children with disabilities, about help received regarding their child's challenging behavior. Parents were asked about medication, psychological and communication advice received from healthcare professionals. If families used complementary medicine they were also asked about how they received help in this area. Parents were asked to rate helpfulness of professionals and parental satisfaction ratings were also obtained. Methods: A questionnaire was sent to 250 parents on the Challenging Behavior Foundations mailing list. The foundation provides information and support to parents and caregivers of intellectually disabled persons with challenging behavior. Eighty seven questionnaires were returned and 66 were used in the study. Children in the study were diagnosed with an intellectual disability and or autism spectrum disorder. Topics on the questionnaire were as follows: background and demographic information, child's disabilities and behavior, nature and perceived helpfulness of professional advice, helpfulness of respite 118

care and overall satisfaction ratings. Results: The average age of children in the study was 12.3 years with a range of 3-19 years. Seventy percent were male and 30% were female, 58% had autism spectrum disorder and 41% had a severe learning disability. In addition to the above diagnoses 29 % also had epilepsy, 17% had a physical disability, 4% had a hearing impairment and 3% had vision impairment. All children were rated as displaying challenging behaviors such as aggression (95%) and it was a serious problem for 45% of the children. Families (53%) reported that psychotropic medication was used to help manage challenging behaviors, psychological advice/treatment had been provided to 71% of respondents at an average range of 8 years of age. Ninety one treatments were identified and 24% were rated as helpful. Communication advice and treatment had been given to 58% of the families at an average age of 6 years for the child, there were 59 treatments and 49% were rated helpful. Twenty six percent of families reported receiving other advice and treatment (parent training, equipment and adaptations) to help manage challenging behavior with 9% reporting this was helpful to them. There were 7 common themes found through at least 5 respondents in the overall satisfaction and additional comments area of the questionnaire and they were: experience of receiving insufficient help and support, importance of insufficient 119

respite provision, perception that professional staff and or services lacked understanding of challenging behavior, interactions with services were a constant battle, family strain, having to find out everything for themselves and experience that the only useful support came from family members, friends or other parents. Critique: Strengths: Findings of this study suggest that parents of disabled children with serious challenging behavior are often not receiving helpful support/advice or treatment, there are concerns raised about the extent of evidenced based research for treatments being used and there are concerns raised about equality of access to help. The fact that this study demonstrated these findings made it strong in the way that it can prove the need for services in this diagnostic area. Limitations: A small sample in foreign country was utilized for the study and findings may or may not be the same in our country or my geographical area. The parental report in this study reflects on families whole life experience with their child u p to the last 20 years and may not represent current experience. Parental accounts may not represent actual advice/treatment and support provided and it was a convenience sample. Relevance to Project: This study has provided me with information regarding how I can work with families that may have a child with a disability and 120

challenging behaviors. I learned that there are specific desires of these families to receive help and maybe I can point them in directions to receive that help by providing contacts in the area where they live as well as teach them how to advocate for their needs. The limitations impact my project in that the study was not done in the United States so the findings may not be able to be replicated. Nonetheless even with this limitation, the awareness I now have will only help to support me in my quest to provide families with support and advocacy experiences.

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Annotation 10 Pain, H. (1999). Coping with a child with disabilities from the parents' perspective: the function of information. Child: Care, Health and Development, 25, 4, 299-312. Study Focus: The purpose of this study was to gain a better understanding of the role information plays in the coping process for parents of disabled children. Information is a vital component in understanding the practical implications of the disability and facilitating adjustment to it. Methods: Fifteen semi structured interviews (done in the home lasting 45 minutes) were conducted with 20 parents (n=5 with both parents; n=10 with mother only) of disabled children between the ages of 4 and 8 years, who had a range of intellectual and physical disabilities. The interviews were meant to explore what information they (the parents) had received about their child's disabilities, from whom and whether they had found it useful. Information needs were also explored. Interviews were audio taped and transcribed and then coded according to whether the information was received or was an unmet need with sub codes for the received information to identify its source and medium. Results: Parents reported personal communication was preferred to any other mode of communication and that written word was valued as a back up to what 122

was said rather than a primary source of information. The use of a home to school communication book was also deemed helpful as were books or newsletters and written records of assessments or reviews of their child. Professionals were deemed to be the most frequently utilized source of information about the child's condition, management of it and services that were available and that other parents were also a source of information for families. Parents also stated that voluntary organizations were used and that having access to these organizations helped parents to plan and feel more in control. Three themes were found for the reasons why parents sought out information regarding their child and they were: to enhance management of their child (for things such as feeding and/or behavior management), to help them cope emotionally and to be able to access benefits and services. The majority of parents who joined a specialty voluntary organization indicated that knowing others in similar situations was helpful, as was an understanding of their child's diagnosis to help explain it to others such as family. Parents all expressed a need to know what services, benefits and facilities were available to enable them to choose what was most appropriate for their child. Critique: Strengths: Strengths in the findings of this study suggest that the ability of professionals to provide information in a way that is easy to 123

understand is positive and helpful/important for parents. For maximum impact a professional should select leaflets of information and direct parents to what to read regarding their child's needs and what is available (Pain, 1999). Availability of support groups or key workers for families was also determined to be needed by families and to me was strength in the findings. Limitations: Data was possibly biased towards things that were important to interviewees rather than it being comprehensive to cover all information sought and the findings are not directly able to be generalized to all parents of disabled children. This study sample was small and it was not conducted in the US. The study should be replicated in the US to determine what the needs are of families in this country and then possibly replicating the study in New Hampshire. Relevance to Project: It was found in this study that parents wanted information regarding: "bringing up their child, they wanted help to identify sources of information, and usefulness of the sources of information to their life and needs. Parents of disabled children face the difficulty of balancing the normal task of parenting with treatment programs, additional physical duties and the need to adjust emotionally to their child's difference from their expectation" (Pain, 1999). Although this study was completed in another country, the results/findings are very important for me to understand. I need to be aware that when providing 124

parent education classes I need to prepare my information for parents with the understanding in mind that parents need to be directed to the information that would best suit their needs.

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Annotation 11 Blackburn, C , & Read, J. (2005). Using the internet? The experiences of parents of disabled children. Child: Care, Health and Development, 31, 5,507-515 Study Focus: The purpose of this study was to establish baseline data in the United Kingdom on adult caregiver's access to and use of the internet and to gather information about their perspectives and opinions about their experience. This study also examined the use of the internet by parents of children with disabilities. Methods: A national cross sectional postal survey of 3014 adult caregivers, of which 788 cared for disabled children ages 0-17, was completed. The questionnaire collected data from 788 parents on the use, experience and views of the internet, their socio-demographic and economic characteristics as well as the circumstances around caring for their child. Survey data were analyzed using frequency distributions and cross tabulations to describe patterns and assess differences between groups. Results: The majority of respondents were women (93%), over half (56%) were not in paid employment and 75% lived in owner occupied accommodations. The majority (89%) of the children were of school age. A high proportion of respondents reported having home access to a personal computer (83%), while 28% used an internet phone and 13% used a web-enabled television. Seventy five 126

percent reported that they had previously experience using the internet. Parents reported using the internet for a variety of purposes related to both the caring of their child and other aspects of their lives. Parents (72%) used the internet directly for obtaining information related to their role as parents of disabled children, which included information on benefits, services and medical conditions. Parents (36%) also used the internet to make contact with organizations relevant to their child or parenting responsibilities and other uses were to obtain equipment for their child, shopping, work, education and to find out information on leisure activities for their child. They also were asked to share what the barriers or problems they ran into when using the internet were, if there were technical issues and the time it took to find information they were seeking. Critique: Strengths: This study draws attention to the fact that the internet assists parents to find services and information for their children with disabilities. The internet can decrease social isolation, decrease barriers to leisure activities and help parents accomplish everyday tasks like shopping. This research study highlighted the fact that the internet was used in a positive manner to benefit the families and to help circumvent barriers to activities that were more difficult to do with their children due to the severity of their needs. Limitations:

There were limitations to the study such as the cost of the internet, 127

the technical difficulties surrounding its use and the needs of the families were very complex, so information may not be available or easily accessible as of yet. The cost of the internet is a huge barrier to consistent and effective use to meet essential needs of families. The study suggests that the government in the United Kingdom, the local authorities and other public organizations need to reduce the barriers or remove them so that the internet can be useable to those that may need it the most. The other limitation was that there are and always will be a portion of the population that does not use the internet so there will always need to be printed information and other forms to ensure that those caregivers are not excluded. Another limitation of this study is that it was performed in the UK and not the United States, where technology may be at a different point and that there are already programs in place for families of disabled children to obtain the internet at reduced cost. Relevance to Project: The strengths and limitations of this study highlight the fact that the use of the internet for my project could be both a blessing and a curse. A blessing in the fact, that I could potentially reach those families that are unable to come out for a parent education class, but I would still need to hold face to face classes or put them on video for parents to watch that don't have access to the internet. My ideas for having a website about my work will also 128

have to be printed for those that do not have access and will need to be provided in places that people generally go such as a doctor's office or school based program. Research has offered "consistent evidence that the provision of crucial information to parents of disabled children at a time when they need it and in a form that they can use is an intractable problem" (Blackburn & Read, 2005). It is important to develop new and effective approaches to information presentation, distribution and delivery.

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Annotation 12 Olson, J., & Esdaile, S. (2000). Mothering young children with disabilities in a challenging urban environment. The American Journal of Occupational Therapy, 54, 307-314. Study Focus: The purpose of this qualitative study was to examine mothering occupations as two mothers living in a challenging urban environment have experienced them in relation to their children with disabilities.

Methods: Two single urban African American mothers in their mid 20's were interviewed with a semi-structured protocol. The sessions were audio-taped; data was transcribed and were analyzed with a phenomenological method. Mothering was defined as a "variable relationship constructed within different historical and cultural contexts in which one person usually female nurtures and cares for another" (Olson & Esdaile, 2000).

The two mothers in this study were

26 and 27 respectively. One had a child who was typically developing until suffering shaken baby syndrome with resultant cerebral palsy, blindness and severe cognitive and language delays and the second mother had a child with a seizure disorder of unknown origin who was severely multiply handicapped and died at one year of age.

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Results: An essential overarching theme was found of "What I got to do" with subthemes of (1) mothering as caring, with separate components of mothering as nurturing and mothering as advocacy and (2) the impact of support systems or lack thereof on the occupations of mothering (Olson & Esdaile, 2000). The two mothers felt defined by their children and that mothering was what they had to do such as diapering, bathing and feeding as well as sharing family activities and normalizing the experience of caring for a child with severe disabilities. The mothers performed different activities in the name of caring such as routine physical care and in addition, one mother had to acquire skills to handle and care for a feeding pump for her child, which was helping her maternal occupation of feeding her child. The other mother had to give her child seizure medication at carefully prescribed times as well as other life preserving activities to keep her son healthy. Neither of these mothers felt angered or burdened by these additional roles it was what they had to do. Both mothers found and organized agency services to meet their children's educational needs and they acted as advocates and case managers. They attended meetings, made phone calls, wrote to agencies and went to university training sessions to help their children. Both mothers did not receive help to do this from outside professional case managers and both of them identified these activities as components of caring for their 131

children. They were also responsible for scheduling appointments, maintaining medication schedules and planning activities/transportation and personal safety as well as obtaining, maintaining and using a variety of equipment and working with their child's therapists. Both mothers felt that support for their occupations as mothers was deficient. The authors (1999) feel that mothering is deserving of the attention of Occupational Therapy practitioners, because it contributes to the mental health that is essential to child development and that they wanted the occupation of mothering to be treated by occupational therapists especially when working with parents of young children with disabilities. Critique: Strengths: The study identified the occupations of the mothers as caring for their child's everyday health needs and then finding the time and having the ability to perform activities that allowed their children to go to doctors and therapy appointments as well as having family members participate in leisure activities. Limitations: Only two participants from the same geographical location (with different contextual factors than those in upper-class areas) were involved in the study and the themes they identified might not be the same for other mothers in different areas of the United States. Relevance to Project: "Mothering is a pivotal occupation for many women. In Occupational Therapy practice with children who have cerebral palsy and other 132

developmental disabilities the occupation of mothering may go unseen as therapeutic efforts rest on working with the child first then the family" (Olson & Esdaile, 2000).

This study demonstrated to me that it is important to look at what families have to do daily and what their needs may be, when providing programming to them as a therapist. It also helped me to understand the role that mothers have and how that can impact their ability to come to education classes that I would like to provide. It has given me more thoughts as to how to arrange classes and where to hold them when thinking about the context of daily life for families of children with special needs. The limitations have encouraged me to perform a small needs assessment via mailing about where to hold classes, what classes do the families want to come to, what information do they need and in what form would they best be attended (in homes, center based or via video or internet).

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Annotation 13 Webb, C. (2005). Parents' perspectives on coping with Duchenne muscular dystrophy. Child: Care, Health and Development, 31,4, 385-396. Study Focus: The author has a grown son with Duchenne Muscular Dystrophy (DMD) and has personally experienced a lack of available information for parents about coping with the disease; therefore she developed the study to address the lack of information available. DMD is the second most common genetic disorder in humans and leads to progressive muscle wasting and results in severe debilitation and eventually death due to respiratory or cardiac failure in the late teens. The diagnosis of DMD presents parents with many challenges such as self blame, powerlessness, rejection and parent/child related stress. Researchers have learned that many different coping mechanisms are used within families to deal with the disease.

Methods: Study sample was selected from volunteer participants and the final 15 families were selected based on the age of the boys in the study, family demographics and geographical location. Individualized semi-structured indepth interviews were conducted and audio-taped. Actual interview questions were developed from the statements and responses made by the families as the interviews progressed, this allowed the researcher to gather additional data to 134

support and corroborate her findings. An independent professional transcribed the tapes verbatim to allow for data analysis using grounded theory. Results: From analysis, coping themes used by families emerged such as: Genetics, Reactions to Diagnosis, Treatment, Equipment and School issues. In coping with DMD, many parents were frustrated by the initial inability to convince the doctors there was a problem, although the signs of DMD were present. Many of the mothers were told that they were being overprotective and were worrying over nothing. Parents felt that medical and other professionals needed to appreciate parents' instincts and give credit to their expertise and concern for their child. Many parents reaction to the diagnosis included "various stages of the grief process such as denial, anger, fear, guilt, confusion, powerlessness, disappointment and rejection" (Webb, 2005). It was found that it was important for medical professionals to be aware of the grief process, to handle diagnosis with empathy and to provide support to parents until they develop coping skills necessary to deal with the diagnosis. There is no treatment to halt the progression of DMD, but it was found that willing parents have several treatment options available to help slow the progression such as being proactive in keeping their boys active such as swimming and stretching, the use of medications and preventative surgery. Parents also rely on the use of special 135

equipment such as ankle foot orthoses, wheelchairs, ramps, lifts, accessible showers, hospital beds, modified vans for transport and accessible homes. They also felt that they had the responsibility to see that their children's schools provided the necessary accommodations so that the children received an appropriate and accessible education. Critique: Strengths: Findings of this study reiterate the value of relying on parents as sources of expert and practical advice. There were implications suggested for professionals who work with children with DMD and they were: give credit to parent concerns, be aware of the grief process and work cooperatively and collaboratively with parents. Limitations: Small study sample, only one diagnosis utilized, the study only included boys and findings may not be able to be generalized to other diagnoses. Relevance to Project: This information presented has given me a great understanding of what parents want and need from medical professionals to learn to cope with life altering situations. The findings will guide me when forming my parent classes and will encourage me to include more time for parents to share their stories so that they feel heard. Even with the limitations in this study I was able to learn how to better organize my classes so that parents can be provided with an outlet to share information. 136

Annotation 14 The Pediatrician's Role in Family Support Programs. (2001). American Academy of Pediatrics, 107, 1,195-197. Paper focus: The purpose of this paper was to demonstrate how pediatricians are able to serve as family advisors and community partners in supporting the wellbeing of children and families. This paper recommends that "opportunities be presented to pediatricians to increase their expertise in assessing the strengths and stressors in families, how to counsel families about strategies and resources and how to collaborate with others in the community" (p.195). The article also focuses on the changes in life challenges in America from longer hours that parents have to spend at work to make ends meet, to being further away from close family and to children possibly being in a household with only one parent due to divorce (p.195). These are just a few of the challenges described in the paper and it is said that pediatricians can play a crucial role in the child and families well being during stressful times. The paper also suggests that there are social changes as well as economic inequalities that make it difficult for families and children. It is difficult especially for those living in poverty stricken areas to participate in well rounded care and receive the support they need to ensure proper child development and health. 137

Methods: The article highlights different types of community support programs that are available to families such as: afterschool programs, school based health services, employers having benefits such as onsite daycare, flexible hours and shared jobs and religious venues being places to obtain social services and support.

Results: An important aspect of this article is that it states that, services should be provided to all families regardless of economic or ethnic background and that families seek out services for at least 3 reasons. The 3 reasons are as follows: "families need or desire certain services; they have encountered difficulties in using existing services and thirdly that, they want to be part of a group of people with similar concerns" (p.196). Important principles of Family Support Programs are highlighted in this article and they are: "that the family is the primary responsible party for the development and well being of the child, that families are part of a community and support needs to be provided to them through links with community resources, that social support for parents of young children serves to prevent behavioral and developmental problems and that types of support families need should be determined by individual families" (p. 196-197). Family support plays a crucial role in promoting the positive functioning of families and ensuring wellbeing of children. Family support is 138

especially effective with families that have a low income. A few recommendations are especially supportive of parent support and education programs as well as pediatrician involvement in supporting parents. "Pediatricians were encouraged to have open and ongoing relationships with parents to facilitate discussions, monitor and guide developmental progress and address concerns. They should continue to participate in continuing education, should consider needs and resources of families, they should work to develop, refer and participate in community based family support programs, provide technical advice on health and safety aspects of services and should actively work in community to develop plans for programs" (p.196-197). Critique: Strengths: Strengths of this article were that there were definite recommendations made to pediatricians that are meant to increase their participation with families and communities that they serve. Community support programs were highlighted as well as principles of family support programs. Limitations: Limitations of this article were that it is not known where these community support programs will be successful, it is not known how much money these would cost to run and the biggest limitation is the fact that pediatricians are very busy and may not be available to be part of family support programs the way that this article intends. 139

Relevance to Project: This article provided me with an understanding of what the American Academy of Pediatrics feels should be the role of the Pediatrician when working with families of children with special needs. It allowed me to have a greater understanding regarding how I can possibly involve local pediatricians in programming that I hope to provide through my doctoral project. The limitations found in this article, could impact my ideas for my program about involving pediatricians in my education classes as there may not be enough time in their schedule to become involved in anything outside of their responsibilities that they currently have.

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Annotation #15

Care Coordination: Integrating Health and Related Systems of Care for Children with Special Health Care Needs. (1999). Pediatrics: Official Journal of the American Academy of Pediatrics, 104, 4, 978-981. Paper focus: This purpose of this paper was to focus on care coordination which is, "a process that links children with special health care needs and their families, to services and resources in a coordinated effort to maximize the potential of the children and provide them with optimal health care" (p.978). This article was a policy statement and it reviewed, "the importance of the primary care pediatrician's role in care coordination in the context of the medical home" (p.978). Methods: The article reviewed multiple systems of care, the components and types of care coordination, the family's role in care coordination and the primary care pediatrician's role. Results/Findings: When a child is involved with medical/therapy and educational professionals in various practices (multiple systems of care), families and pediatricians often are working with organizations that may have different belief systems than what the family and pediatrician have. Due to the possibility of children having more than one specialist provider, there can be difficulty 141

linking systems of health care to provide a coordinated effort. Another issue that was raised in this paper was of third party payors being involved in most if not all of the organizations that children might receive care in. Third party payors such as insurance companies do not always approve of certain treatments, tests and even at times don't pay for specialty services. An eligibility criterion is also another issue, as eligibility is usually dependent on the child's diagnosis, family income and expected benefit of services. Each program that a child may be involved in may have different eligibility criteria. Families have been known to experience difficulty obtaining access to services and often need extra assistance from primary care doctors. In the educational system children with special needs are at times excluded from services because they do not meet criteria in certain categories and this is especially difficult since many states do not follow the same criteria. Findings of parent and medical/therapists roles are that, family members are able to lead care coordination teams due to their personal relationship with their child, but in order to be effective as coordinators they need to understand their child's needs, condition and skills and should be supported by their family. Pediatricians, nurses and therapists are also able to lead care coordination teams especially when there is a medically complex child involved, because they often have access to services that families may not know 142

about. It was found that "positive changes do occur when families and professionals work together and when they do not work together cost of care can increase, patient satisfaction decreases and care becomes disorganized and fragmented" (p.979). There are barriers reported regarding the pediatricians role as care coordinator within the medical home concept. Barriers are: "a lack of knowledge about the child's chronic condition, community resources and/or how to coordinate services, a lack of communication between team members, extra time and effort required to be a care coordinator; lack of adequate reimbursement and many people may want to perform the role" (p .979-980). Critique: Strengths: Specific recommendations are made on how to support the roles of pediatricians and professionals as well as families in care coordination. Limitations: It is not known how this program will affect the medical profession in the form of time needed for it and how the care coordination program will work in every state or pediatrician office. Relevance to Project: I can take the recommendations from this paper and directly apply it in conversations that I want to have with medical professionals about why it is important to have someone in the care coordination role. When speaking with families I can educate them on movements made to have medical professionals more aware of care coordination and can make families aware of 143

programs that are available to educate professionals on this specific matter. One of the limitations of this study was that often professionals want to know how much time it will take for them to perform roles and how they will be reimbursed. I believe a study of this type of service should be done to better understand what is needed by the pediatrician or medical professional.

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Appendix B: Informational Survey for parents (to be completed in June 2009) Child(ren) (gender and age for each) Diagnosis

Concerns

Services that are currently being received (OT, PT, SLP, Nursing, Social Work etc..) What services have been received in the past?

What programs in the state and community do you know about?

o

Occupational Therapy

o

Physical Therapy

o

Speech and Language Therapy

o

Early Supports and Services

o

Feeding therapy

o

Applied Behavior Analysis

o

Nutrition services

o

Other:

o

Parent Information Center

o

Area Agencies

o

NH Family Voices

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How did you find out about services and programs?

Do you belong to an Area Agency? If so, which one?

o

Bureau of Special Medical Services

o

Early Supports and Services

o

Other:

o

Newsletters

o

Magazines

o

Medical provider

o

Internet

o

Friends

o

Family

o

Daycares

o

Other:

o

Region 1

o

Region 5

o

Region 8

o

Region 2

o

Region 6

o

Region 9

o

Region 3

o

Region 7

o

Region 10

o

Region 4

If you are not part of an Area Agency would you like to be referred? How did you become involved with your Area Agency?

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Who referred you for Area Agency Services?

Do you feel your child's doctor is aware of state and local programs that provide support and advocacy?

What would you like to learn about?

Respite care

How to navigate insurance and healthcare

Parent support programs Circle programs you are interested in learning about

Understanding diagnoses or concerns

Legislation related to healthcare and disabilities State programs

Coping Skills How to interact with families and friends

How to speak with medical professionals OTHER:

Contact information: name, address and phone number (if you would like to participate)

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Demographic information to support parent networking: (this will be sent out with survey)

In order to place families in groups for utmost support the program director would like to understand your opinion regarding the information below: When creating groups are there any characteristics of others that you would most be looking for in a peer support group? Please describe below.

S Similarity in ages of parents and children S Similarity in household income? •S Similarity in level of education achieved? •S Similarity in marital status? •S Similarity in primary language spoken in the home? •f Similarity in literacy level? S

Similarity in ethnicity?

S

Similarity in cultural views?

Would you be willing to speak with the program director regarding any concerns? If you would like to speak with the program director please leave a phone number and a convenient time to reach you.

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Appendix C: Data from National Family Voices Program The following is a summary of topics and data reflected in this document from 31 states across the US that participated in this data report (states were not i d e n t i f i e d ) (Summary of Data Reported to Family Voices by F2F HICs and Network Members July, 2003 through June, 2004, 2008).

Helping Families and Professionals: D 64,791 requests for assistance were received from families. • 37,216 requests for assistance were received from professionals. • 64% of requests were from families. • 36% of requests were from professionals. Providing Information & Assistance to Families and Professionals: • Information and assistance on Health Care Financing (HCF), which includes public health care programs, private insurance, and health services covered by an educational program, was provided more often than any other measured category of information. • Information / assistance on HCF were provided during 37,901 requests for assistance from families and professionals. D The total # of requests in which Parent to Parent information & support was provided was 24,748.

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• Community resource information was provided in 14,180 requests for assistance from parents and/or professionals. Helping Families and Professionals understand Health Care Financing: • Within the category of HCF, the information / assistance most frequently provided was about public HCF programs such as Medicaid, Waivers, SCHIP, Title V, DD and SSI. • The number of requests for assistance in which information /assistance was provided on public HCF increased from 2,011 in Jul- Sept 2003 quarter to 11,441 in the Apr-Jun, 2004 quarter, almost a 500% increase. Listening to and helping Families resolve problems with Health Care Financing: • Families reported problems with a public health care financing program (Medicaid, Waivers, SCHIP, Title V, SSI, and DD) in 6,388 requests for assistance. • Many families reported problems with health services covered by an IEP, 504, or EI program Providing Information to Many People in a Variety of Ways: • Distribution of almost 2 million newsletters • Distribution of about Vi million handouts • Discussions with an average of 10,839 listserv members 150

• Participation in 6,809 meetings attended by over 215,000 family members and/or professionals Partnering with Professionals: D Received 1,295 requests from professionals to review materials. Helping Families from Underserved Communities D Reached an average estimate of 45% of families from underserved communities through all activities

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Appendix D: Class Outline

Class Four: How to communicate with healthcare personnel and insurance companies: (60-120 minute talk with 30-60 minutes of socialization after class with refreshments) (outline of handouts for this class will be provided within appendix E)

I will partner with New Hampshire Family Voices to provide the following information:

•

How to create a personal health notebook/binder of their child's health and developmental information that allows easy access to information when it is needed to communicate with professionals (a notebook will be presented and for view in the room). We will begin to create binders in the class)

•

How to make concerns known to doctors and therapists, how to ask questions

•

We will provide ideas such as writing down questions prior to appointments

•

How to use a calendar to chart concerns 152

•

How to deal with wait times for appointments (if this is a concern)

•

How to obtain referrals for professionals you would like to have on your child's medical team

Document titled MAZE 08 (pdf) will be used in this class and specific sections will be handed out, that will address how to make concerns known, how to ask questions. Pages three and four and pages fifty eight through eighty four specifically will be used as information that will be presented and handed out in a packet. From pg one hundred and two on will be available for participants to take with them if they so choose to. These documents from MAZE 08 are attached in appendix E.

Document titled Medical Appointment will be utilized and handed out

Document titled Medical emergencies will be utilized and handed out

Document titled NH Medical Home will be utilized and handed out

Document titled Prescription Tips will be utilized and handed out

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Appendix E: Class Four Resources: For Getting Answers to Your Questions (page 3, MAZE 08) Families/parents/consumers need to find easy ways to get information about available resources and services to meet their needs. Here are some tips to help

"If s about not giving up and about asking a lot of questions. Persistence is the word I use. Pushy, sometimes yes. But persistent is really it because you don't have to be pushy, you just have to not give up." • Keep calling and keep asking questions. • Ask for names and phone numbers of other people to contact. D If the recorded voice on the phone is confusing, often you can just stay on the line. Then you will be connected with a person. • Written request or email may result in a prompt response.

"Get organized. Write down when you called, who you talked with, and what the conversation was about. You're going to need to go back to that at some point - you're not going to be able to remember it all."

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Keep track of: • Who you talked with, the phone number, and the date of the call. D The name of the organization and the information you were given. D What you and what they agreed to do - and by what date. • Their ideas about other people to contact.

"Families need to educate themselves about all aspects of their child's special needs."

• Get information from your providers, the library, other parents, or the internet.

• Make sure the information you receive is correct and u p to date. Ask your doctor or health provider about the information you find.

Keep Trying - Keep Notes - Educate Yourself

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Information to Have at Your Finger Tips (page 4, MAZE 08) for class four

Many agencies and service providers need basic information when looking at what your family may qualify for. Having this information written out ahead of time -can save time and energy.

Legal Name: Address:

Date of Birth: Town:

Telephone numbers: Home:

Zip: Work:

Cell: E-mail address: Child's/family members SS#:

Primary Care Doctor:

Address: Tel:

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Health Insurance Information Subscriber Name: Policy #: Child/Family Members Diagnosis:

Family Information Number of members in household: Income (annual gross): Service Providers that know your family member

Name: Tel: Name: Tel: Name: Tel: These sheets will be provided to all families to help them be able to tell doctors and therapists important information as well as fill out applications for different programs

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Resources for Class Four Community Health Programs Many NH families benefit from a variety of preventive health care and education services throughout the state. Many of these services are offered either directly through the NH Department of Health and Human Services, Division of Public Health Services or through a contract with local health agencies. Emphasis is placed on providing services to people who do not have access to medical services. Primary Care Centers The Community Health Agencies are staffed with family physicians, nurse practitioners, social service providers and other health professionals. These centers provide the full range of primary care for all members of the family. The Community Health Centers accept most forms of health insurance and offer a sliding fee scale based on income for uninsured clients. No one is turned away due to inability to pay. The Child Health Program Nine local community health agencies and ten community health centers administer the Child Health Program (CHP). The CHP allows these health care providers to offer comprehensive, preventive direct health care to low-income

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children through clinic and home visits. Services include physical exams, health screenings, immunizations, anticipatory guidance, assistance with health care enrollment, referrals, case management, care coordination, and education and counseling relative to the child and family. Community Health Agencies PORTSMOUTH AREA Families First Health Center Portsmouth site: (603) 422-8208 ROCHESTER & DOVER AREA Avis Goodwin Community Health Center Rochester site: (603) 749-2346 Dover site: (603) 749-2346 NEWMARKET, RAYMOND AND NASHUA AREA Lamprey Health Care Newmarket site: (603) 895-3351 Raymond site: (603) 895-3351 Nashua site: (603) 883-1626

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MANCHESTER AREA Manchester Community Health Care Manchester site: (603) 626-9500 x 9523 CONCORD AND HILLSBORO AREA Capital Region Family Health Center Concord site: (603) 228-7200 Hillsboro site: (603) 464-3434 CONWAY AND WOLFEBORO AREA White Mt. Community Health Center Conway site: (603) 447-8900

Community Health Women, Infants & Children Nutrition Services (WIC) NH DHHS Office of Community & Public Health Women, Infants & Children Nutrition Services 29 Hazen Drive Concord, NH 03301 Telephone: (800) 942-4321 or (603) 271-4546 TDD Number - (800) 735-2964

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Web: www.dhhs.state.nh.us/DHHS/WIC/default.htm WIC Nutrition Services administers health and nutrition programs. The WIC Program has locations statewide. There are income guidelines. Woman, Infants and Children (WIC): provides free food and nutritional information to pregnant woman, new mothers, infants and children under the age of 5 years. Commodity Supplemental Food Program (CSFP): a nutrition education program that provides free food and nutrition information to promote good health for children up to age 5 years and postpartum women for a year after the birth of a child as well as seniors age 60 and over. Farmers' Market Nutrition Program (FMNP): provides coupons to WIC & CSFP participants to purchase fresh fruits, vegetables and herbs at participating Farmers' Markets throughout NH. Breastfeeding Promotion and Support: A public awareness effort to increase awareness of the benefits of breastfeeding for both a mother and an infant as well as to provide resources and support to women breastfeeding. Breastfeeding Promo-Support - (800) 852-3310 Ext. 3858 or (603) 271-3858

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WARREN, LITTLETON, WOODSVILLE AND WHITEFIELD AREA Mt. Moosilaukee Health Services Warren site: (603) 764-5704 Littleton site: (603) 444-2464 Woodsville site: (603) 747-3990 Whitefield site: (603) 837- 2333 Franconia site: (603) 825-7078

FRANKLIN AREA Health First Family Care Center Franklin site: (603) 934-1464 Laconia site: (603) 366-1070

NEWPORT AREA Valley Regional Health Care/Partners In Health Newport site: (603) 543-6960

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BERLIN AREA Coos County Family Health Center Berlin site: (603) 752-2040

Community Health Childhood Lead Poisoning Prevention Program NHDHHS Division of Public Health Services 29 Hazen Drive Concord, N H 03301 Telephone: (800) 852-3345 X 4507 or (603) 271-4507 Web: www.dhhs.state.nh.us/DHHS/CLPPP/default.htm The program is a resource for N H residents who need help addressing the hazards of lead in their children's environment. The CLPPP conducts statewide surveillance; provides medical case management and home inspections for leadpoisoned children; and provides information and referral for reduction and abatement of lead hazards. Professional program staff provides free phone consultation and referral to lead screening providers, as well as free lead poisoning prevention information kits.

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Immunization Program NHDHHS Division of Public Health Services 29 Hazen Drive Concord, N H 03301 Telephone: (800) 852-3345 X 4482 or (603) 271-4482 Web: www.dhhs.state.nh.us/DHHS/IMMUNIZATION/default.htm The program promotes immunization initiatives for children and adults to assure the opportunity for a lifetime of protection from vaccine preventable diseases. Information about NH Statutes and laws pertaining to immunizations required for school and day care entry. Children and Youth with Special Health Care Needs Special Medical Services NHDHHS Division of Developmental Disabilities 129 Pleasant St, Concord, NH 03301 Telephone: (800) 852-3345 Ext. 4488 or (603) 271-4488 Web: www.dhhs.state.nh.us/DHHS/SPECIALMEDSRVCS/default.htm

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Special Medical Services provides medical care coordination and financial services to children with physical, developmental disabilities, chronic health conditions and other special health care needs. Financial Assistance for health care and related services to families are also available if the child is under the age of 21 years, has an eligible medical condition and the family is financially eligible.

Healthcare Insurance Resources NH Healthy Kids 25 Hall Street, Suite 302 Concord, N H 03301 Telephone: 1-877-464-2447 Web: www.nhhealthykids.org

Healthy Kids Medical Insurance NH Healthy Kids provides free or low-cost health insurance to uninsured New Hampshire children. Healthy Kids (HK) premiums are based on family size and income. Income includes any income earned from working or self-employment and unearned income such as child support, alimony, Social Security Disability 165

(SSDI), other Social Security payments, unemployment, Veteran's, or Worker's Compensation benefits, or any income received on a regular basis. Your family's income may be adjusted to reflect certain additional expenses such as Child or Adult Day Care so you can work, Court-Ordered Child Spousal Support or Wage Garnishment. The non-financial eligibility requirements are: • Age: Your child must be under the age of 19. • Residency: Your child must be a N H resident. • Citizenship: Your child must be a US citizen or an eligible qualified noncitizen. • Insurance Status: Your child may be eligible for Healthy-Kids Gold regardless of insurance status. However, if your family's monthly income places your child in the Healthy-Kids Silver program, your child must have no other health insurance coverage or must not have had coverage within the last 6 months (unless certain good cause reasons for termination of health coverage, such as job loss, exist). Social Security Number: Your child does not have to provide an SSN if your family's monthly income places your child in the Healthy-Kids Silver program. However, if your child is eligible for Healthy-Kids Gold, your child's SSN must be provided. 166

Healthy Kids Silver Healthy Kids Silver coverage is provided through a managed care plan from Anthem BCBS. The Anthem network of health care providers is available to your child. Dental services are available through the Northeast Delta Dental network of dentists. Special Eligibility: Your child must be uninsured for six consecutive months prior to enrollment. This requirement may be waived for good cause. Job loss or cases of domestic violence are examples of good cause reasons. Cost: There is a monthly premium cost. Cost is based on income and family size. A copayment (usually $10) is required for some services. Co-payments are due at the time of the visit. Preventive cares, including well-child and dental checkups are fully covered. Premium costs have a family maximum for the number of children enrolled. The total of premiums and co-payments cannot exceed 5% of your family income in a calendar year.

Healthy Kids Buy-In The Buy-In program does not receive any state or federal funding. Families who are not eligible for State sponsored coverage through Healthy Kids may be able to buy into the Silver program. Co-payments and benefits are the same,

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excluding maternity services, at a monthly cost per child. There are income guidelines for this program.

Eligibility for the Buy-In program is available to: • Families with children ages 1-19 with higher incomes • Non-citizen children who are legal residents but otherwise not eligible • Children over the age of 19 who are still enrolled in high school • Children who have been uninsured for three consecutive months prior to enrollment

Healthy Kids Gold is the NH Medicaid program for children up to age 19 with income no higher than 185% of the federal poverty income limits or, if the child is younger than 1 year and has no other health insurance coverage, income can be no higher than 300% of the federal poverty income limits, (see FPL) No premium.

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NH Medicaid Medical Assistance Eligibility These are "doorways of eligibility" for qualifying for Health Kids Gold Medicaid services, or Medicaid for adults (over the age of 19). These require a medical eligibility determination in addition to a financial eligibility determination.

• Home Care for Children with Severe Disabilities (HC-CSD): commonly referred to as Katie Beckett: requires children to meet SSI eligibility criteria for children and an institutional (nursing facility) level of care. Only considers the child's income and resources for financial eligibility. The coverage is the same as Healthy Kids Gold.

H Aid to the Needy Blind (ANB): a category of eligibility that requires an individual (child or adult) to be diagnosed as legally blind. The visual acuity in the better eye can be no greater than 20/200.

• Aid to the Permanently and Totally Disabled (APTD): an adult service category that requires individuals between ages 18 to 64 to meet the Social Security impairment severity requirements and to be unable to perform

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substantial gainful activity for 48 consecutive months as a result of the impairment.

NH HB 790 - Dependent Care Expansion In July, 2007 the N H Legislature passed the "Dependent Care Expansion" that required certain insurance plans to expand the definition of dependent to include a subscriber's child who: D is less than 26 years of age, D is unmarried • is a resident of NH, or is enrolled at a public or private institution of higher education, and • is not provided coverage as a named subscriber under any other group or individual health plan or entitled to benefits under certain governmental programs.

This gives families the opportunity to keep their child on their health insurance until their 26th birthday. For more information call the N H Insurance Department (below).

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The New Hampshire Insurance Department Consumer Division 21 Fruit St. Suite 14 Concord, N H 03301 Telephone: (800) 852-3416 or (603) 271-2261 Web: www.nh,gov/insurance Information about companies offering Health Insurance in NH; Individual Health Plans; Medical Savings Accounts (MSA); IRS information on MS As; Short Term Medical Plans; Health Maintenance Organizations in New Hampshire; Long-Term Care Insurance; Small Group Health Plans (1-50) as well as legal information can be accessed through the N H Insurance Department.

Minority Health Resources

NH DHHS Minority Health Office 129 Pleasant Street, Concord, NH 03301 Telephone: (800) 852-3345 x3986 or (603) 271-3986 / TDD Number: (800) 735-2964 Web: www.dhhs.state.nh.us/DHHS/MHO/default.htm

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Eligibility for services provided by DHHS Minority Health Office is based upon the need of individuals to resolve issues of access to DHHS services.

NH Minority Health Coalition 25 Lowell Street, 3rd Floor P.O. Box 3992 Manchester, N H 03105 Telephone: (866) 460-9933 or (603) 627-7703 Web: www.nhhealthequity.org The Minority Health Coalition's mission is to identify populations in the state with barriers to accessing appropriate healthcare, to advocate for adequate and appropriate services and to empower these populations to be active participants in their own health care. Services include educational programs, home visiting, and medical interpretation.

International Institute of New Hampshire (IINH) 315 Pine St. Manchester, N H 03103 Telephone: (603) 647-1500 172

Web: www.iiboston.org/imh.htm Offers comprehensive resettlement services to newcomers in New Hampshire, and provides the resources, guidance, and educational opportunities that enable new Americans. All IINH services are offered free of charge, except certain legal and citizenship services, which are provided at nominal fees. Services currently offered include: • Refugee Resettlement • English-as-a-Second-Language • Health Services • Employment & Training • Social Services • Immigration Legal Aid NH Refugee Program Office of Energy and Planning 57 Regional Drive, Suite 3 Concord, N H 03301-8519 Telephone: (603) 271-2155 Web: www.nh.gov/oep/programs/refugee/index.htm The New Hampshire Refugee Program at the Office of Energy and Planning (OEP) provides federally funded services to refugees resettled in NH. The major goal of this program is to assist refugees in achieving economic self-sufficiency and social adjustment. 173

Latin American Center 521 Maple Street Manchester, N H 03104 Telephone: (603) 669-5661 Latin American Center activities are designed to support, strengthen and enhance the lives of the Hispanic community. Programs include: • Escuelita (a summer enrichment program for inner city children); D Bilingual assistance in completing forms and applications; • Spanish interpretation and translation services; English as a Second Language (ESL) classes; D Parenting classes; D Mentoring and positive role modeling.

ALPHA Youth Services provides middle and high school youth with academic tutoring, resiliency training, computer skills, counseling life skills training, and recreational activities in a structured, supportive setting.

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Translators / Interpreters New Hampshire Department of Education English for Speakers of Other Languages (ESOL) Program New Hampshire Department of Education 101 Pleasant Street Concord, NH 03301 Telephone: (603) 271-3196 or (603) 271-3887 Web: http://www.ed.state.nh.us/education/doe/organization/instruction/ESOL/transdir ectory.htm On the Department of Education's web site is an alphabetical listing of translators / interpreters by name as well as an alphabetical listing of translators/interpreters by language.

The New Hampshire Language Bank Lutheran Social Services of Northern New England 261 Sheep Davis Road, Suite A-l, Concord, NH 03301. Telephone: (603) 224-8111 or Cell phone - (603) 491-4255 175

Fax: (603) 224-5473 Web: www.lcsnne.org/languagebank.html If an interpreter is needed, call and an Interpreter Request Form will be faxed to you. Fax complete form, back a minimum of 48 hours prior to appointment. If less than 48 hours, fax form and call for confirmation. The fee is $45 per hour

with a 2-hour minimum.

Community Health Resources

New Hampshire Family Voices 129 Pleasant Street Concord, N H 03301 Telephone: (800) 852-3345 X4525 or (603) 271-4525 Web: www.nhfv.org N H Family Voices is a Family-to-Family Health Information and Education Center. We are parents having children and adults with special health, developmental, physical, or behavioral needs. We assist families with: • Information and resources including information on diagnosis and specific health conditions 176

D Technical assistance with health care insurance and healthcare financing • Health in educational settings D Workshops and presentations • Lending library of books, videos, and audio tapes with a specialty in children's books on specific conditions and disabilities, sibling relationships, behavior and social issues • Free newsletter "Pass It On" Partners In Health The Hood Center for Children and Families One Medical Center Drive Lebanon, N H 03756 Telephone: (603) 653-1483 Web: www.nhpih.dartmouth.edu PIH is a community-based program designed to address the needs of families of children with chronic health conditions in NH. They work with schools, medical providers, churches, social services, and other community institutions to create a setting that will enhance the quality of life of families. They serve families with children from birth to age 21 with a chronic health condition: certified by a

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physician, expected to last six months or more, and having a significant impact on daily life. Below are the community based contacts and the towns they serve.

Region and Towns Served by Partners In Health REGION 1 Berlin, Carroll, Clarksville, Colebrook, Columbia, Dalton, Dixville, Dummer, Errol, Gorham, Jefferson, Lancaster, Milan, Northumberland, Pittsburg, Randolph, Shelburne, Stark, Stewartstown, Stratford, Wentworth, Whitefield.

Family Resource Center Child and Family Services 123 Main Street Gorham, N H 03581 Telephone: (603) 466-9027

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Region and Towns Served Partners In Health REGION 2 Acworth, Charlestown, Claremont, Cornish, Croydon, Goshen, Grantham, Langdon, Lempster, Newport, Plainfield, Springfield, Sunapee, Unity, Washington.

Pathways of River Valley 654 Main St. Claremont, NH 03743 Telephone: (603) 542-8706 Web: www.pathwaysnh.org

REGION 3 Alexandria, Alton, Ashland, Barnstead, Belmont, Bridgewater, Bristol, Campton, Center Harbor, Ellsworth, Gilford, Gilmanton, Groton, Hebron, Holderness, Laconia, Meredith, New Hampton, Plymouth, Rumney, Sanbornton, Thornton, Tilton, Wentworth.

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Community Health and Hospice 780 N. Main St. Laconia, NH 03246 Telephone: (603) 524-8444 X344 Web: www.chhnh.org

REGION 4 Allenstown, Andover, Boscawen, Bow, Bradford, Canterbury, Chichester, Concord, Danbury, Deering, Dunbarton, Epsom, Franklin, Henniker, Hill, Hillsboro, Hopkinton, Loudon, Newbury, New London, Northfield, Pembroke, Pittsfield, Salisbury, Sutton, Warner, Weare, Webster, Wilmot, Windsor.

Community Bridges 525 Clinton St. Bow, NH 03304 Telephone: (603) 226-3212 Web: www.communitybridgesnh.org

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REGION 5 Alstead, Antrim, Bennington, Chesterfield, Dublin, Fitzwilliam, Francestown, Gilsum, Greenfield, Greenville, Hancock, Harrisville, Hinsdale, Jaffrey, Keene, Lyndeborough, Marlborough, Marlow, Nelson, New Ipswich, Peterborough, Richmond, Rindge, Roxbury, Sharon, Stoddard, Sullivan, Surry, Swanzey, Temple, Troy, Walpole, Westmoreland, Winchester.

Monadnock Developmental Services 121 Railroad Avenue Keene, N H 03431 Telephone: (603) 352-1304 Web: www.mds-nh.org/

REGION 6 Amherst, Brookline, Hollis, Hudson, Litchfield, Mason, Merrimack, Milford, Mont Vernon, Nashua, Wilton.

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Gateways Community Services Inc. 144 Canal Street Nashua, NH 03064 Telephone: (603) 459-2744 Web: www.region6.com

REGION 7 Auburn, Bedford, Candia, Goffstown, Hooksett, Londonderry, Manchester, New Boston

VNA of Manchester and Southern NH 33 South Commercial St. Suite 401 Manchester, NH 03101 Telephone: (603) 622-3781 Web: www.manchestervna.org/

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REGION 8 Brentwood, Deerfield, East Kingston, Epping, Exeter, Fremont, Greenland, Hampton, Hampton Falls, Kensington, Kingston, New Castle, Newfields, Newington, Newmarket, North Hampton, Northwood, Nottingham, Portsmouth, Raymond, Rye, Seabrook, South Hampton, Stratham

Families First Health Center 100 Campus Drive Suite 12 Portsmouth, NH 03801 Telephone: (603) 422-8208 X 146 Web: www.familiesfirstseacoast.org/

REGION 9 Barrington, Dover, Durham, Farmington, Lee, Madbury, Middleton, Milton, New Durham, Rochester, Rollinsford, Somersworth, Strafford

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Community Partners Forum Court, 113 Crosby Rd. #1 Dover, NH 03820 Telephone: (603) 749-4015 X 209 Web: www.dssc9.org/

REGION 10 Atkinson, Chester, Danville, Derry, Hampstead, Newton, Pelham, Plaistow, Salem, Sandown, Windham

Gateways Community Services, Inc. 144 Canal Street Nashua, NH 03064 Telephone: (603) 459-2763 Web: www.region6.com

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REGION 11 Albany, Bartlett, Brookfield, Chatham, Conway, Eaton, Effingham, Freedom, Harf s Location, Jackson, Madison, Moultonboro, Ossipee, Sandwich, Tamworth, Tuftonboro, Wakefield, Wolfeboro

White Mountain Community Health Center 298 White Mountain Highway PO Box 2800 Conway, NN 03818 Telephone: (603) 447-4240

REGION 12 Canaan, Dorchester, Enfield, Grafton, Hanover, Lebanon, Lyme, Orange, Orford

The Hood Center for Children and Families One Medical Center Drive Lebanon, NH 03756 Telephone: (603) 653-1483 Web: http://hoodcenter.dartmouth.edu/ 185

Council for Children & Adolescents with Chronic Health Conditions 21 South Fruit St. Ste. 22 Concord, N H 03301 Telephone: (603) 225-6400 Web: www.ccachc.org The Council for Children and Adolescents with Chronic Health Conditions was established to analyze the barriers for families of children and adolescents with chronic health conditions in obtaining appropriate and effective community and family-based services and support. The Council works with state and local agencies to improve the capacities of communities to respond to needs of children and adolescents with chronic health conditions and provide support to their families.

Chronic Conditions Information Network (CCIN) PO Box 3, Cavendish, VT 05142 Telephone: (802) 226-7807 Web: www.cc-info.net

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CCIN of Vermont and New Hampshire, is an independent, non profit organization, providing a free electronic network of information and resources for those living in New Hampshire and Vermont who are affected by chronic illness/injury, CCIN has developed a comprehensive website to address the multiple problems and issues that can occur.

REGION 13 Bath, Benton, Bethlehem, Easton, Franconia, Haverhill, Landaff, Lincoln, Lisbon, Littleton, Livermore, Lyman, Monroe, Piermont, Sugar Hill, Warren, Waterville, Woodstock.

Ammonoosuc Community Health Services 25 Mount Eustis Road Littleton, N H 03561 Telephone: (603) 444-5962 Web: [email protected]

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Community Health Resources

Dental Clinic - NH Technical Institute 31 College Drive Concord, N H 03301 Telephone: (603) 271-7160 Sponsor: N H Technical Institute Web: http://www.nhti.edu/campuscommunity/dentalclinic.htm Area Served: Concord Low cost check-ups and general oral prophylaxes. NHTFs dental hygiene students under supervision of faculty, provide services to the public which include oral prophylaxes exams, x-rays, and the application of sealants. Clinic open to all New Hampshire residents at nominal fee of $20 for adults and $15 for children. Clinic runs Sept-April.

Seacare Health Services 11 Downing Court Exeter, NH 03833 Telephone: (603) 772 8119 188

Web: www.seacarehealthservices.org Area Served: Seacoast SeaCare Health Services helps people, who do not have health insurance and cannot afford to pay for medical services, get health care. A group of committed dentists treat SeaCare members for emergency dental services for $20 per visit.

Home Care Association of New Hampshire (HCANH) 8 Green Street, Suite 2 Concord, N H 03301 Telephone: (800) 639-1949 or (603) 225-5597 Web: www.homecarenh.org Area Served: Statewide The Home Care Association of New Hampshire (HCANH) represents licensed agencies that provide in-home health care and supportive services to individuals living in New Hampshire. The Association promotes the delivery of responsible, high quality health care in the home by offering education and networking opportunities for home care professionals, providing leadership on home care issues, and serving as a home care advocate in the public policy arena.

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Community Health Resources Crotched Mountain Children's Specialty Hospital 1 Verney Drive Greenfield, N H 03047 Telephone: (800) 258-1466 or (603) 347-3311 Web: www.crotchedmountain.org Crotched Mountain offers a full range of clinical and rehabilitation services for children and adults with disabilities. Outpatient Services: Aquatic Therapy, Audiology, Assistive Technology, Developmental Pediatric Diagnostic Evaluations and follow-up consultation, Dysphagia and Functional Assessment of Swallowing Disorders, Occupational Therapy, Physical Therapy, Psychological and Neuropsychological Assessments, Sensory Integration Therapy, Speech and Language Assessments and Wheelchair Seating & Mobility Assessments.

Children's Hospital at Dartmouth - CHaD 1 Medical Center Drive Lebanon, NH CHaD Information Line. (603) 650-KIDS 190

Web: www.dhmc.org Children's Hospital at Dartmouth offers an array of pediatric sub-specialties, outreach clinics and in hospital supports and services.

New Hampshire Poison Information Center If you have a poisoning emergency, call 1-800-222-1222 immediately.

Home Health Care There are different types of caregivers who provide home health care services to children with special health care needs. They may be an RN, LPN, LNA (Licensed Nurse Assistant), or a Personal Care Attendant (PCA). You, the parent or guardian, should be able to interview and have the final approval of the home based caregiver for your child. You should decide if your child or other family members should participate in the interview and in preparation make a list of questions applicable to the care of your child. Some suggested questions for the interview might be:

• Where have you worked before? D What were your duties? 191

• How do you handle people who are angry, stubborn, or fearful? • Are you able to lift or transfer from a wheelchair to bed? D Is there anything in the job description that you are uncomfortable doing? Consider what qualities/skills you require and what you can train a good candidate to do. Be sure that you have a chance to watch the interactions between the in-home caregiver and the family member for whom he or she will be providing care. It is natural to feel nervous and unsure about having someone you may not know come into your home to provide care or other services for your child with special health care needs. To ease your fears and to help you get a good start in your relationship with your child's in-home caregiver, here are some steps to take before services begin: • Learn as much as you can about the scope or description of services to be provided, and about the agency that employs the person who will be your child's caregiver. • Be open and honest about your expectations and discuss them with the agency management. Find out what the agency expects of you. D Ask about your rights and options in case you are not satisfied with the care or services your child receives. You may want to ask the agency for a different caregiver or switch to another agency altogether. 192

• Talk with other families who use in-home caregivers and learn from their experiences. Home Health Care Providers Agency Services Provided (This does not represent all services) Type of Payment Accepted

Benda HomeCare Solutions 10 Vaughan Mall, Suite 16 Portsmouth, N H 03801 Tel: (877) 628-3772 or (603) 431-0505 Web: www.bendahomecare.com Home Health Aide, Homemaker, Medical Social Services, Newborn Assessment, Pediatric High Tech Nursing, Private Duty Nursing Medicaid Medicare Private Insurer Private Pay

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Nurses PRN, Inc. PO Box 122,22 Greeley St. Merrimack, NH 03054 Tel: (800) 642-3686 or (603) 424-9479 Psychiatric Nursing, Pediatric High Tech Nursing, Newborn Assessment, Intravenous Therapy, Homemaker, Home Health Aide Medicaid, Medicare, Private Insurer, Private Pay

Connecticut Valley Home Care 958 John Stark Highway Newport, N H 03773 Tel: (603) 543-6800 Web: www.vrh.org Pediatric High Tech Nursing, Respite Care, Respiratory Therapy, Psychiatric Nursing, Private Duty, Newborn Assessment, Intravenous Therapy, Homemaker, Home Health Aide Medicaid, Medicare, Private Insurer, Private Pay, Sliding Fee

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Home Health & Hospice Care - Merrimack

80 Continental Boulevard Merrimack, N H 03054 Tel: (800) 887-5973 or (603) 882-2941 Web: www.hhhc.org Homemaker, Newborn Assessment, Nursing, Occupational Therapy, Pediatric High Tech Nursing, Personal Care, Private Duty, Psychiatric Nursing, Respite Care Medicaid, Medicare, Private Insurer, Private Pay, Sliding Fee

Concord Regional Visiting Nurse Association PO Box 1797, 250 Pleasant Street Concord, N H 03302 Tel: (800) 924-8620 or (603) 224-4093 Web: www.crvna.org

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Respite Care, Rehab Nursing, Psychiatric Nursing, Private Duty, Pediatric High Tech Nursing, Newborn Assessment, Homemaker, Home Health Aide Medicaid, Medicare, Private Insurer, Private Pay, Sliding Fee

Home Health & Hospice Care - Nashua 22 Prospect Street Nashua, N H 03060 Tele: (800) 887-5973 or (603) 882-2941 Web: www.hhhc.org Respite Care, Psychiatric Nursing, Private Duty, Pediatric High Tech Nursing, Newborn Assessment, Homemaker, Home Health Aide Medicaid, Medicare, Private Insurer, Private Pay, Sliding Fee

Home Healthcare, Hospice & Community Services, Inc. PO Box 564, 312 Marlboro Street Keene, N H 03431 Tel: (800) 541-4145 or (603) 352-2253 Web: www.hcsservices.org

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Psychiatric Nursing, Private Duty, Pediatric High Tech Nursing, Homemaker, Home Medical Equipment, Home Health Aide Medicaid, Medicare, Private Insurer, Private Pay, Sliding Fee

Interim HealthCare - Keene 403 Winchester Street Keene, N H 03431 Tel: (800) 486-3746 or (603) 352-7290 Web: www.interimhealthcare.com/newhampshire Respite Care, Rehab Nursing, Psychiatric Nursing, Private Duty, Pediatric High Tech Nursing, Newborn Assessment, Homemaker, Home Health Aide Medicaid, Medicare, Private Insurer, Private Pay, Sliding Fee

Interim HealthCare - Laconia 277 Union Avenue, Suite 202 Laconia, N H 03246 Tel: (800) 486-3746 or (603) 524-7212 Web: www.interimhealthcare.com/newhampslTire

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Respite Care, Rehab Nursing, Psychiatric Nursing, Private Duty, Pediatric High Tech Nursing, Newborn Assessment, Homemaker, Home Health Aide Medicaid, Medicare, Private Insurer, Private Pay, Sliding Fee

Interim HealthCare - Manchester PO Box 1780 Manchester, N H 03105 Tel: (800) 486-3746 or (603) 668-6956 Web: www.interimhealthcare.com/newhampshire Respite Care, Rehab Nursing, Psychiatric Nursing, Private Duty, Pediatric High Tech Nursing, Newborn Assessment, Homemaker, Home Health Aide Medicaid, Medicare, Private Insurer, Private Pay, Sliding Fee

Interim HealthCare - Nashua 159 Main Dunstable Road Nashua, N H 03060 Tel: (800) 486-3746 or (603) 880-4412 Web: www.interimhealthcare.com/newhampshire

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Respite Care, Rehab Nursing, Psychiatric Nursing, Private Duty, Pediatric High Tech Nursing, Newborn Assessment, Homemaker, Home Health Aide Medicaid, Medicare, Private Insurer, Private Pay, Sliding Fee

Interim HealthCare - Portsmouth 875 Greenland Road Portsmouth, N H 03801 Tel: (800) 486-3746 or (603) 436-4155 Web: www.interimhealthcare.com/newhampshire Respite Care, Rehab Nursing, Psychiatric Nursing, Private Duty, Pediatric High Tech Nursing, Newborn Assessment, Homemaker, Home Health Aide Medicaid, Medicare, Private Insurer, Private Pay, Sliding Fee

Interim HealthCare - West Lebanon 1 Glen Rd, Plaza Ste 222 West Lebanon, NH 03784 Tel: (800) 486-3746 or (603) 298-7411 Web: www.interimhealthcare.com/newhampshire

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Respite Care, Rehab Nursing, Psychiatric Nursing, Private Duty, Pediatric High Tech Nursing, Newborn Assessment, Homemaker, Home Health Aide Medicaid, Medicare, Private Insurer, Private Pay, Sliding Fee

Lake Sunapee Region Visiting Nurse Association and Affiliates PO Box 2209,107 Newport Road New London, N H 03257-2209 Tele: (800) 310-4077 or (603) 526-4077 Web: www.lakesunapeevna.org Pediatric High Tech Nursing, Respite Care, Respiratory Therapy, Rehab, Psychiatric Nursing, Private Duty, Newborn Assessment, Homemaker, Home Medical Equipment, Home Health Aide Medicaid, Medicare, Private Insurer, Private Pay, Sliding Fee

Franklin VNA & Hospice 75 Chestnut Street Franklin, NH 03235 Tel: (603) 934-3454 Web: www.vnafnh.org 200

Pediatric High Tech Nursing, Respite Care, Respiratory Therapy, Rehab, Psychiatric Nursing, Private Duty, Newborn Assessment, Homemaker, Home Medical Equipment, Home Health Aide Medicaid, Medicare, Private Insurer, Private Pay, Sliding Fee

Souhegan Home & Hospice Care 24 North River Road Milford, N H 03055 Tel: (800) 453-1310 or (603) 673-3460 Web: www.souheganhhc.com Respite Care, Respiratory Therapy, Rehab Nursing, Pediatric High Tech Nursing, Newborn Assessment, Home Medical Equipment, Home Health Aide Medicaid, Medicare, Private Insurer, Private Pay, Sliding Fee

Visiting Nurse & Hospice Care Services of Northern Carroll County, Inc. PO Box 432 46 Seavey Street North Conway, N H 03860 Tel: (603) 356-7006 201

Web: www.thememorialhospital.org/visitingnurses.html Psychiatric Nursing, Private Duty, Pediatric High Tech Nursing, Newborn Assessment, Home Health Aide Medicaid, Medicare, Private Insurer, Private Pay, Sliding Fee

Visiting Nurse Association of Manchester & Southern NH, Inc. 1850 Elm Street Manchester, N H 03104-2911 Tel: (800) 622-3781or (603) 622-3781 Web: www.manchestervna.org Respite Care, Respiratory Therapy, Rehab Nursing, Psychiatric Nursing, Private Duty, Pediatric High Tech Nursing, Newborn Assessment, Homemaker, Home Medical Equipment, Home Health Aide Medicaid, Medicare, Private Insurer, Private Pay Sliding Fee

Upper Connecticut Valley Hospital Home Health Agency 181 Corliss Lane Colebrook, N H 03576 Tel: (603) 237-8460 202

Web: www.hitchcock.org/pages/dha/vcvh.html Respite Care, Respiratory Therapy, Rehab Nursing, Psychiatric Nursing, Private Duty, Pediatric High Tech Nursing, Newborn Assessment, Homemaker, Home Medical Equipment, Home Health Aide Medicaid, Medicare, Private Insurer, Private Pay, Sliding Fee

Live Free Health Care PO Box 218 New Hampton, NH 03256 Tel: (603) 346-4214 Web: www.LiveFreeHomeHealthCare.com Respiratory Therapy, Rehab Nursing, Psychiatric Nursing, Private Duty, Pediatric High Tech Nursing, Newborn Assessment, Homemaker, Home Medical Equipment, Home Health Aide Medicaid, Medicare, Private Insurer, Private Pay

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VNA and Hospice of VT and N H 46 South Main Street, Suite 1 White River Junction, VT 05001 Tel: (800) 858-1696 or (802) 295-2604 Web: www.vnanh.org Speech Therapy, Respite Care, Rehab Nursing, Psychiatric Nursing, Private Duty, Pediatric High Tech Nursing, Newborn Assessment, Homemaker, Home Health Aide Medicaid, Medicare, Private Insurer, Private Pay, Sliding Fee

VNA/Hospice of Southern Carroll County and Vicinity, Inc. PO Box 1620 South Main Street Wolfeboro, N H 03894 Tel: (888) 242-0655 or (603) 569-2729 Web: www.vnahospice.net

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Speech Therapy, Respite Care, Rehab Nursing, Psychiatric Nursing, Private Duty, Pediatric High Tech Nursing, Newborn Assessment, Homemaker, Home Health Aide Medicaid, Medicare, Private Insurer, Private Pay Sliding Fee

These agencies are a starting point. This list may not include all of the agencies in the state that provide home health care services. Always check with your health insurer about a list of home health agencies they cover.

Out of Home Respite and Residential Options

The Children's Specialty Hospital at Crotched Mountain 1 Verney Drive Greenfield, N H 03047 Telephone: (800) 966-2672 or (603) 547-3311, X494 Web: www.crotchedmountain.org Crotched Mountain offers a full range of education, clinical, rehabilitation and residential support services for children and adults with disabilities from New Hampshire. 205

Residential Services: provides round-the-clock nursing care and medical supervision by a team of physicians who specialize in the care of children who have experienced a traumatic injury or who were born with a developmental delay. Accepts children between the ages of 2 and 22 and who are medically stable. Applicants can be admitted with tracheotomy, catheters, feeding tubes, and orthopedic needs. The program rates are generally covered by private health insurers or Medicaid. Respite Services: The respite program serves families throughout N H who are caring for children with complex medical needs and who need a break from a sometimes stressful home schedule. Weekend, a week or longer respite is available. Cedarcrest 91 Maple Avenue Keene, N H 03431 Telephone: (603) 358-3384 Web: www.cedarcrest4kids.org Cedarcrest is a small, non-profit pediatric facility offering specialized care to children from birth to age sixteen who have a variety of disabilities, including high-risk medical conditions and/or multiple disabilities. 206

Residential: Provides round-the-clock care for up to 26 children with complex medical and developmental needs. A carefully orchestrated daily routine assures individual attention to each child's medical, personal care and developmental needs. This care is coordinated and supervised by the Medical Director and the Director of Nursing Services. Respite/Short Term Care: Cedarcrest provides short-term care, post-operative care, feeding assessments and comprehensive evaluations. Cedarcrest also serves as a transitional placement between hospital and home, providing both the specialized medical care needed by the child as well as training for families around the child's unique medical needs.

Resources for Specific Conditions and Disabilities The following is a quick list of agencies, programs and organized groups that provide information and support regarding specific conditions and disabilities here in NH.

AIDS / HIV Dartmouth-Hitchcock Medical Center - Infectious Diseases Clinic (603) 650-6060 207

Merrimack Valley Assistance Program Web: www.mvap.org (603) 226-0607

Greater Manchester Assistance Program (603) 623-0710

Positive Action (603) 775-2083

N H AIDS Hotline (800) 752-AIDS

N H Department of Health STD/ HIV Program (603) 271-4486

State of NH HIV Drug Reimbursement Program (603) 271-4483

Southern N H AIDS Task Force Web: www.aidstaskforcenh.org (603) 595-8464

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ALLERGIES / ASTHMA The Food Allergy Group of Southern N H (603) 888-9536 or (603) 888-1108

New England Asthma & Allergy Foundation of America Web: www.asthmaandallergies.org (877) 2-ASTHMA

Breathe NH (formally the American Lung Association of N H Web: www.breathenh.org (603) 669-2411

ARTHRITIS Arthritis Foundation Northern New England Branch Web: www.arthritis.org (603) 224-9322 or (800) 639-2113

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AUTISM Autism Society of New Hampshire Web: www.nhautism,com (603) 679-2424

Jacob's Bridge Through Autism Web: www.jbtautism.org

Asperger's Association of New England (AANE) Web: www.aane.org (617) -393-3824

BLIND / VISUALLY IMPAIRED N H Blind and Visually Impaired (NHBVI) www.nhbvi.com

N H Chapter of the National Association for Parents of Children with Visual Impairments (NAPVI) Web: www.spedex.com/napvi (603) 432-2273 210

New Hampshire Association for the Blind Web: www.sightcenter.com (800) 464-3075 or (603) 224-4039

BRAIN INJURY Brain Injury Association of New Hampshire Web: www.bianh.org (800) 773-8400 or (603) 225-8400

CANCER Childhood Cancer Lifeline Web: www.childhoodcancerlifeline.org (603) 645-1489

American Cancer Society Web: www.cancer.org (603) 472-8899

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CARDIAC American Heart Association Web: www.americanheart.org (603) 669-5833

CYSTIC FIBROSIS Cystic Fibrosis Foundation, Northern New England Chapter Web: www.cff.org/Chapters/newengland (603) 598-8191

DEAF AND HARD OF HEARING Northeast Deaf and Hard of Hearing Services Web: www.ndhhs.org (800) 492-0407

HEAR in New Hampshire Web: www.hearinnh.org (603) 624-4464

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DIABETES N H Chapter of the Juvenile Diabetes Research Foundation Web: www.jdrf.org/newhampshire (603) 222-2300

American Diabetes Association N H Branch Web: www.diabetes.org (603) 627-9579

DOWN SYNDROME Northern New England Down Syndrome Congress Web: http://nnedsc.org (603) 622-6904

DWARFISM New England Chapter Little People of America Web: www.lpadl.org

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FRAGILE X New Hampshire Fragile X Resource Group Web: www.fragilex.org/html/newhampshire.htm (603) 329-4632

HEMOPHILIA New England Hemophilia Association Web: www.newenglandhemophilia.org (781) 326-7645

LIVER American Liver Foundation New England Chapter Web: www.liverfoundation.org/chapters/newengland (800) 298-6766 or (617) 527-5600

MENTAL HEALTH National Alliance for the Mentally 111 New Hampshire Chapter Web: www.naminh.org (800) 242-6264 214

MITOCHONDRIAL Marcel's WayWebsite: http://www.marcelsway.org (877) 412-4141 or (603) 487-5500

MULTIPLE SCLEROSIS National MS Society New England Chapter Web: www.nationalmssociety.org (800) 493-9255

MUSCULAR DYSTROPHY Muscular Dystrophy Association Web: www.mdausa.org (603) 471-2722

PRADER - WILLI SYNDROME Prader-Willi Syndrome Assoc, of New England Web: http://members.aol.com/pwsane (508) 478-2065 215

RETINOBLASTOMA New England Retinoblastoma Support Web: www.spedex.com/napvi (800) 562-6265

SPINAL CORD INJURY N H Chapter National Spinal Cord Injury Association Web: www.nhspinal.org (603) 216-3120

TOURETTE SYNDROME Maine /New Hampshire Chapter Tourette Syndrome Association Web: www.tsa-maine.org (877) 368-9800 or (207) 428-3040

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NH Department of Health and Human Services (NHDHHS) RSA 126-A: 4 Department Established "... to provide a comprehensive and coordinated system of services, to promote and protect the health, safety and well-being of NH citizens, directed at supporting families, strengthening communities and developing the independence and self-sufficiency of N H citizens to the extent possible."

The N H Department of Health and Human Services is an agency that helps people in partnership with families, community groups, private providers, other governmental agencies and many thousands of foster parents, neighbors, and citizens. The majority of the people who use programs and services have multiple needs and require services from more than one program. DHHS is responsible for many of the regulatory, programmatic, and financial aspects of NH's health care system and plays a key role in the planning, delivery and financing of health care. It provides social and support services to families with chronically ill or disabled members and to families in crisis. DHHS also provides economic supports including child care funding, financial grants, employment support services, medical assistance, food assistance and child support services. 217

Financial and social services are provided, to a large extent, through a network of 12 District Offices located across NH. Behavioral health services are made available through Community Mental Health Centers, institutions such as the Glencliff Home for the Elderly, New Hampshire's Acute Care Psychiatric Facility and the Tirrell House. People with developmental disabilities receive community-based services through a system of non-profit Area Agencies. In addition, DHHS provides services through networks of contractual providers, both public and private. Local contractors complement and expand DHHS' capacity to provide community-based services. Web: www.dhlis.state.nh.us

NHDHHS District Offices (DO's) Twelve DHHS "field" offices, called District Offices (DO), provide a single point for individuals and families to access DHHS services within their own communities. District Office staff determine eligibility or provide help for individuals and families for a wide array of programs and services. Programs and services available at a DHHS District Office include: financial assistance, child support enforcement, nursing home care and long term care, protective 218

services for elderly and disabled individuals, child protection, foster care, adoption, juvenile justice, food stamps, child care, Medicaid and other medical assistance programs.

Berlin Office 231 Main Street Berlin, N H 03570 Main Number: (603) 752-7800 Toll Free Number: (800) 972-6111 TDD Number: (800) 735-2964 Claremont Office 17 Water Street Suite 301 Claremont, NH 03743 Main Number: (603) 542-9544 Toll Free Number: (800) 982-1001 TDD Number: (800) 735-2964 Concord Office 40 Terrill Park Dr. Concord, N H 03301 219

Main Number: (603) 271-6200 Toll Free Number: (800) 322-9191 TDD Number: (800) 735-2964 Conway Office 73 Hobbs Street Conway, N H 03818 Main Number: (603) 447-3841 Toll Free Number: (800) 552-4628 TDD Number: (800) 735-2964 Keene Office 809 Court Street Keene, NH 03431 Main Number: (603) 357-3510 Toll Free Number: (800) 624-9700 TDD Number: (800) 735-2964 Laconia Office 65 Beacon Street W. Laconia, N H 03246 Main Number: (603) 524-4485 220

Toll Free Number: (800) 322-2121 TDD Number: (800) 735-2964 Littleton Office 80 N. Littleton Road Littleton, NH 03561 Main Number: (603) 444-6786 Toll Free Number: (800) 552-8959 TDD Number: (800) 735-2964 Manchester Office 195 McGregor St. Suite 110 Manchester, N H 03102 Main Number: (603) 668-2330 Toll Free Number: (800) 852-7493 TDD Number: (800) 735-2964

NH DHHS Ombudsman Office 129 Pleasant Street Concord, N H 03301-3857 Telephone: 800-852-3345 X 6941 or (603) 271-6941 TDD Number (800) 735-2964 221

The Ombudsman Office assists clients, employees and members of the public to resolve disagreements related to matters within the jurisdiction of DHHS. Types of issues the Ombudsman Office deals with are complaints regarding: D Medicaid services • Cash assistance services • Services to persons with developmental disabilities • Mental illnesses and substance abuse problems • Regulatory problems • Services for children, youth and families • Juvenile justice services; • Administrative decisions • Employee concerns D Any other services provided by DHHS or its contractors. The Ombudsman Office utilizes unbiased investigation, mediation and other alternative dispute resolution methods and provides information and referral services.

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Nashua Office 19 Chestnut Street Nashua, N H 03060 Main Number (603) 883-7726 Toll Free Number (800) 852-0632 TDD Number (800) 735-2964 Portsmouth Office 30 Maplewood Avenue Suite 200 Portsmouth, N H 03801 Main Number (603) 433-8300 Toll Free Number (800) 821-0326 TDD Number (800) 735-2964 Rochester Office 150 Wakefield Street Suite 22 Rochester, N H 03867 Main Number (603) 332-9120 Toll Free Number (800) 862-5300 TDD Number (800) 735-2964

Salem Office 154 Main Street Salem, N H 03079 Main Number (603) 893-9763 Toll Free Number (800) 852-7492 TDD Number (800) 735-2964 NHDHHS Services: Division of Family Assistance (DFA) 129 Pleasant Street Concord, N H 03301 Telephone: (800) 852-3345 X4238 or (603) 271-4238 /TDD: 800-735-2964 Web: www.dhhs.state.nh.us/DHHS/DF A/CONTACT+INFO/default.htm Client Services - (800) 852-3345 x4238 or (603) 271-4238 Client Services TDD - (800) 735-2964 EBT Electronic Benefit Client Questions - (888) 997-9777 The Division of Family Assistance (DFA) administers programs and services for eligible N H residents providing financial, medical and food & nutritional assistance, help with child care costs, and emergency help to obtain and keep safe housing. Family assistance staff helps to determine initial and continuing eligibility. The amount of benefits and delivery of benefits is determined using 224

federal and N H guidelines and policies. There are seven major types of assistance administered by DFA for N H residents. The following is a brief description of those assistance types.

These services are accessed through the DHHS District Office (DO). • Cash Assistance is provided through DFA in two general program areas, the Temporary Assistance for Needy Families (TANF) and State Supplemental. • TANF provides assistance to needy families with dependent children and is divided into two programs, the NH Employment Program (NHEP) and the Family Assistance Program (FAP). • State Supplemental is divided into three programs and provides assistance to the disabled, blind and seniors through the Aid to the Permanently and Totally Disabled (APTD) Program, the Aid to the Needy Blind (ANB) Program and the Old Age Assistance (OAA) Program. • Food and Nutritional Assistance assists individuals and families through the Food Stamp program. • Medical Coverage assists disabled and elderly adults, blind individuals, children, pregnant women and families through the Medicaid and N H Healthy Kids Programs. DFA determines eligibility for medical coverage and works 225

cooperatively with the Office of Medicaid Business and Policy, the Division of Elderly & Adult Services, the Division of Developmental Services and the NH Healthy Kids Corporation to ensure that eligible adults and children have access to needed health care services. Preventative dental care is included for those under age 21. • Emergency Assistance assists families with dependent children who may qualify for TANF in obtaining and keeping safe and healthy permanent housing.

NHDHHS Division of Family Assistance • Medicare Beneficiaries Savings Program assists individuals who qualify for Medicare coverage through the Social Security Administration by paying some of the associated costs of Medicare coverage such as monthly premiums or required deductibles. • Child Care Assistance assists parents engaged in work, training or educational activities leading to employment to afford quality care for their children. DFA determines eligibility based on rules and policies administered by the Child Development Bureau. Payments to child care providers are coordinated by DFA in cooperation with the Child Development Bureau. Cash assistance is issued twice per month via Electronic Funds Transfer (EFT) or 226

Electronic Benefits Transfer (EBT). Cash assistance issued via EFT is deposited directly into an individual's checking or savings account and is accessible in the same manner as any other cash in the account. Cash assistance issued via EBT is accessed through a debit-style EBT card and individuals can either swipe the EBT card through a point-of-sale machine at participating retailers or use ATM machines to access the cash assistance. Food Stamp benefits are issued once per month via EBT and individuals swipe the EBT card through a point of sale (POS) machine at participating retailers when purchasing food. Office of Medicaid Business and Policy 129 Pleasant Street Concord, N H 03301-3857 Telephone: (800) 852-3345 X5254 or (603) 271-5254 TDD Number - (800) 735-2964 Web: www.dhhs.state.nh.us/DHHS/MEDICAIDPROGRAM/default.htm Client Services: (800) 852-3345 X4344 or (603) 271-4344 The Medicaid program is a federal and state funded program that serves individuals and families who meet financial and /or other eligibility requirements. The Division of Family Assistance (DFA) determines financial eligibility and categorical eligibility and Medicaid Administration determines 227

medical eligibility when it is required. The program provides payment for medical services ranging from routine preventive medical care for children to institutional care for the elderly and disabled.

NHDHHS Office of Medicaid Business and Policy Some of the specific medical services covered by the Medicaid program include hospital, physician, nursing facility, home health, lab, x-ray, family planning, rural health clinics, prescription drugs, physical-occupational-speech therapy, adult medical day care, medical transportation, medical supplies, durable medical equipment, dental, chiropractor, psychotherapy, podiatry, interpreter, advanced registered nurse practitioners, certified midwife, private duty nursing, EPSDT (early, periodic, screening and diagnostic testing), newborn home visits, extended services to pregnant women, personal care attendant, vision care, audiology, nursing facility, home and community based care for the elderly. The program also covers services for developmentally disabled individuals and persons with acquired brain disorders, as well as services at community mental health centers.

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Targeted Health Services • Healthy Kids: administered in partnership with the N H Healthy Kids Corporation, this program provides health care access to NH's uninsured children by promoting healthy lifestyles, encouraging preventive health and dental care, treating illness early and managing chronic health conditions. D Home Care for Children with Severe Disabilities (HC-CSD), commonly referred to as the Katie Beckett program: Administered in partnership with the Division of Family Assistance (DFA) for severely disabled children up to age 19 whose medical disability meets SSI eligibility criteria for children and be institutional level of care, but are cared for at home. • Home and Community Based Care for Acquired Brain Disorders (HCBCABD): managed by the HHS, Division of Developmental Services (DDS), these services are available to individuals with traumatic brain injuries or neurological disorders that chose to remain in community settings in lieu of institutionalization. • Home and Community Based Care for Developmentally Disabled (HCBCDD): managed by the HHS, Division of Developmental Services (DDS), these services are available to individuals with developmental disabilities and their families who chose to remain in community settings in lieu of 229

institutionalization. Developmental disability determinations for eligibility for services are made within DDS. • In Home Supports (HCBC-IHS): managed by the HHS, Division of Developmental Services (DDS), these services are available to children under the age of 21 with significant needs and who reside at home with their families. Developmental disability determinations for eligibility for services are made within DDS. This program is also referred to as Independence Plus.

Office of Community & Public Health Bureau of Maternal & Child Health 29 Hazen Drive Concord, N H 03301 Telephone: (800) 852-3345 X4517 or (603) 271-4517 TDD Number: (800) 735-2964 Web: www.dhhs.state.nh.us/DHHS/BMCH/default.htm

Bureau of Maternal and Child Health administers a broad array of programs. Community health agencies around the state receive funds through contracts with BMCH to deliver services to pregnant women and their infants including prenatal care, child health services, family planning and home visiting services. 230

BMCH staff develops program guidelines based on best practices and monitor the performance and quality of services delivered.

BMCH also administers these programs: • The Sudden Infant Death Syndrome (SIDS) Program offers information, support and resources to family and care providers of infants suspected to have died of SIDS. • The Newborn Metabolic Screening Program monitors the blood screening of all infants born in N H for as many as 32 potentially serious disorders and ensures immediate follow-up for abnormal results. • The Universal Newborn Hearing Screening Program screens newborns for possible hearing loss or deafness to ensure timely and appropriate intervention. • The Preschool Vision & Hearing Program conducts screening clinics throughout N H for children ages 3 1/2 to 6 years old and provides referrals and follow-up.

NH DHHS Division for Children, Youth & Families 129 Pleasant Street Concord, N H 03301 231

Telephone: (800) 852-3345 X4451 or (603) 271-4451 TDD Number: (800) 735-2964 Web: www.dhhs.state.nh.us/DHHS/DCYF/default.htm The Division for Children, Youth and Families manages protective programs on behalf of NH's children, youth and their families. DCYF staff provides a wide range of family-centered services with the goal of meeting a parent's and a child's needs and strengthening the family system. Services are designed to support families and children in their own homes and communities whenever possible, as long as safety is not an issue. DCYF is comprised of six major program areas.

Bureau of Child Protection: Telephone: (800) 852-3345 X4451 or (603) 271-4451 Child Abuse Report Line: (800) 894-5533 The Bureau of Child Protection works to protect children from abuse and neglect while attempting to preserve the family unit.

Foster Care: Telephone: (800) 852-3345 X4711 or (603) 271-4711 Specially trained Foster Care Workers in each DHHS District Office recruit, train and license foster families and match children entering the system with a foster family best suited to meet the specific needs of each child. 232

Adoption: Telephone: (800) 852-3345 X4707 or (603) 271-4707 Placement specialists provide assessment and case management services for children whose parents' parental rights have been terminated. Children are assessed for potential adoption and adoptive parents are recruited, trained and provided with needed support.

Domestic Violence Services: Telephone: (800) 852-3345 X4702 or (603) 271-4702 Domestic Violence Program Specialists employed by local community crisis centers are located in each DHHS District Office (DO) to help identify domestic violence situations and provide support to victims of domestic violence.

Child Development Bureau: Telephone: (800) 852-3345 X4451 or (603) 271-4451 The Child Development Bureau provides technical assistance and support to early care and education programs as well as provides consumer education and child care training programs to help communities develop and maintain child care programs.

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Child Welfare Resources NH Foster and Adoptive Parent Association PO Box 2802 Concord, N H 03302 Telephone: (877) 964-3272 Web: www.nhfapa.org This organization, comprised of individuals who promote by attitude and action, constructive social action needed to bring about changes and improvements in Child Welfare Systems and in Legislation pertaining to all Children and Families. They also act as an information center and research body regarding Child Welfare matters and disseminate such information, as well as provide the vehicle for communication among Foster and Adoptive Parents, Local Foster and Adoptive Parent Associations and Child Welfare Agencies.

Child and Family Services Manchester Headquarters 99 Hanover St. Manchester, N H 03105 Telephone: (800) 640-6486 or (603) 518-4001 Web: www.cfsnh.org 234

Child and Family Services is an independent nonprofit agency dedicated to advancing the well-being of children by providing an array of social services to strengthen family life and by promoting community commitment to the needs of children. Casey Family Services 105 Loudon Road, Bldg. 2 Concord, N H 03301 Telephone: (800) 417-7375 or (603) 224-8909 Web: www.caseyfamilyservices.org Casey Family Services is a fully licensed and accredited nonprofit child welfare agency. Casey Family Services provides foster care (including treatment care and supporting youth making the transition to independence) along with postadoption, family reunification, preservation and advocacy and other services for families and children. Casey Family Services has also established innovative community-based programs to strengthen families and enable parents to provide the healthy, nurturing environments their children need to grow and thrive.

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Casey Family Services Casey Family Services Resource Center 551 Meadow St. Franklin Middle School Littleton, N H 03561 200 Sanborn Street Telephone: (866) 622-2739 or (603) 444-9909 Franklin, N H 03235 Telephone: (603) 934-3170

Lutheran Social Services of Northern New England 261 Sheep Davis Road, Suite A-l Concord, N H 03301 Telephone: (603) 224-8111 Web: www.lssne.org/aboutus.html Lutheran Social Services of New England Offers the following programs here in NH. • International adoption services in Concord, N.H.; • Therapeutic Foster Care in Concord, N.H.; • The Antrim Girls Shelter, Antrim, N.H. • Interfaith Refugee Resettlement in Concord, N.H.

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NH Catholic Charities 215 Myrtle Street PO Box 686 Manchester, N H 03105-0686 Telephone - (800) 562-5249 or (603) 669-3030 Web: www.catholiccharitiesnh.org N H Catholic Charities provides a range of social services to persons regardless of creed, social, or economic background. Through a network of offices and parishes throughout the ten counties of the state their services strive to heal, comfort, and empower persons in need and to advocate for social justice.

Family Strengths Home-Based Behavioral Health Solutions 85 North State Street Concord, New Hampshire 03301 Telephone: (603) 228-3266 Web: www.familystrength.org Family Strengths is a non-profit agency providing state of the art, in-home counseling and support to individuals and families throughout New Hampshire. 237

From regional offices around the state, Family Strengths offers a flexible array of culturally sensitive services to help family members of all ages address a variety of challenging life circumstances and crises. Seacoast Region, Manchester Region, Southwestern Region 728 Central Avenue Dover, N H 03820 Telephone: (603) 742-5662 540 Chestnut Street Manchester, N H 03101 Telephone: (603) 641-3001 206 Roxbury Street Keene, N H 03431 Telephone: (603) 357-8772

Western Region Derry/Salem Region North Country Region 169 Main Street Claremont, N H 03743 Telephone: (603) 543-5984

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72 West Broadway Derry, NH 03038 Telephone: (603) 432-0463 123 Main Street Gorham, N H 03581 Telephone: (603) 466-9015

Children's Alliance of NH 2 Greenwood Avenue Concord, N H 03301 Telephone: (603) 225-2264 Web: www.childrennh.org The Children's Alliance of New Hampshire is a statewide, nonprofit advocacy organization with over a decade of experience working on behalf of the health and well being of the children of this state.

Division of Developmental Services (DDS) 105 Pleasant Street Concord, N H 03301-3857 239

Telephone: (800) 852-3345 or (603) 271-5034 /TDD: (800) 735-2964 Web: www.dhhs.state.nh.us/DHHS/DDS/default.htm The Division of Developmental Services (DDS) works with NH's developmental services system to ensure public resources are used effectively to support individuals and families in their community. The N H developmental services system offers its consumers with developmental disabilities and acquired brain disorders a wide range of supports and services within their own communities. DDS is comprised of a main office in Concord and 10 designated non-profit and specialized service agencies that represent specific geographic regions of NH; the community agencies are commonly referred to as Area Agencies. All direct services and supports to individuals and families are provided in accordance with contractual agreements between DDS and the Area Agencies. Supports include service coordination, day and vocational services, personal care services, community support services, assistive technology services, specialty services and flexible family supports including respite services and environmental modifications. Funding for supports and services for people with developmental disabilities and acquired brain disorders in N H is provided through two primary mechanisms: the Medicaid Home and Community Based Care Waiver and funds commonly referred to as "state flexible funding." DDS operates three Medicaid 240

Home and Community Based Care Waivers. The Home and Community Based Care For Individuals with Developmental Disabilities waiver (HCBC-DD), The Home and Community Based Care For Individuals with Acquired Brain Disorders waiver (HCBC-ABD) and the In Home Supports (HCBC-HIS) for children with developmental disabilities.

Acquired Brain Disorder Services 105 Pleasant Street Concord, N H 03301-3857 Telephone: (800) 852-3345 or (603) 271-5034 /TDD: (800) 735-2964 Web: http://www.dhhs.state.nh.us/DHHS/DDS/default.htm Offers eligible adults with acquired brain disorders and traumatic brain injuries a wide range of supports and services within their communities. All direct services and supports to individuals and families are provided through the Developmental Disabilities Area Agency system.

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Family Resource Centers Family Resource Centers offer a welcoming atmosphere for family-oriented programs, resources, activities and classes to strengthen families and promote positive parenting. A Family Resource Center is a non-profit, community-based setting available and accessible to all families in that community. The center has services and programs that are designed to meet the needs of the community it serves. Individuals may access services not only in times of need, but as a regular part of day-to-day life.

The Children's Place & Parent Education Ctr. 27 Burns Avenue Concord, N H 03301 Telephone: (603) 224-9920 Web: www.thechildrensplacenh.org

Concord Heights Neighborhood Family Center The Dame School 14 Canterbury Road Concord, N H 03301 242

Telephone: (603) 225-0830 Web: www.concord.kl2.nh.us/comm/dam/dame.html

Families First of the Greater Seacoast 100 Campus Drive Portsmouth, N H 03801 Telephone: (603) 422-8208 Web: www.familiesfirstseacoast.org

Family Connections at the Adult Learning Center 4 Lake Street Nashua, NH 03060 Telephone: (603) 882-9080 X205 Web: www.adultlearningcenter.org

Family Resource Center of Gorham 123 Main Street Gorham, N H 03581 Telephone: (603) 466-5190 243

Web: www.frcberlin-gorham.org

The Grapevine Family & Community Resource Center 43 Main Street Antrim, N H 03440 Telephone: (603) 588-2620

The HUB Family Resource Center 23 Atkinson Street Dover, NH 03820 Telephone: (603) 749-9754 Web: www.hubfamilies.org/

Lakes Regional Community Services Council Giggles and Grins Family Resource Center 67 Communications Drive Laconia, N H 03247 Telephone: (603) 524-8811

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Child & Family Services 99 Hanover Street Manchester, N H 03105 Telephone: (603) 668-1920 Web: www.cfsnh.org

Easter Seals - The Family Place Cozy Corners Plaza #5 61 Route 27/107 Raymond, N H 03077 Telephone: (603) 895-1522

Family Resource Centers The Upper Room 36 Tsienneto Road Derry, N H 03038 Telephone: (603) 437-8477 Web: www.urteachers.org

White Birch Community Center 9 Hall Avenue Henniker, N H 03242 Telephone: (603) 428-7860 Web: www.whitebirchcommunitycenter.org

Riverbend Parent-Child Centers Locations in Concord, Penacook, Pittsfield, Franklin and Hillsboro 70 Pembroke Road Concord, N H 03302 Telephone: (603) 226-7505 X3215 Web: www.riverbendcmhc.org

Family Connections Center Lakes Region Facility 1 Right Way Path Laconia, N H 03246 Telephone: (603) 528-9266

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Good Beginnings of Sullivan County 169 Main Street Claremont, N H 03743 Telephone: 542-1848 Web: http://sullivancounty.goodbeginnings.net/

Monadnock Family Services 64 Main Street Keene, N H 03431 Telephone: (603) 357-6870 Web: www.mfs.org/

Family Center of Greater Peterborough P.O. Box 207 44-46 Concord Street Peterborough, N H 03458 Telephone: (603) 924-6306 Web: www.thefamilycenter.us

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Wolfeboro Area Children's Center 180 South Main Street Wolfeboro, N H 03894 Telephone: (603) 569-5733 Web: www.wolfeborochildren.org/

Whole Village Family Resource Center 258 Highland Street Plymouth, NH 03264 Telephone: (603) 536-3720 Web: www.wholevillage.net

Family Resource Center at Franklin Middle School Casey Family Services 200 Sanborn Road Franklin, NH 03235 Telephone: (603) 934-3170

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VNA Community Services 33 South Commercial Street, Suite 401 Manchester, N H 03101 Telephone: (603) 622-3781 Web: www.manchestervna.org

Family Resource Connection NH State Library 20 Park Street Concord, NH 03301 Telephone: (800) 298-4321 Web: www.nh.gov/nhsl/frc/faq.html

Special Needs Support Center of the Upper Valley Parent to Parent of New Hampshire 12 Flynn Street Lebanon, NH 03766 Telephone: (800) 698-LINK (5465) or (603) 448-6311 Web: www.snsc-uv.org Web: www.parenttoparentnh.org 249

Offers parent to parent matches, information and referral, and training.

NH Family Voices 129 Pleasant Street Concord, NH 03301 Telephone: (800) 852-3345 X4525 or (603) 271-4525 Web: www.nhfv.org Parent support, lending library, resources, information as well as specialized supports for families having children with special health care needs.

Parent Information Center P.O. Box 2405 Concord, N H 03302-2405 Telephone: (800) 232-0986 or (603) 224-7005 (V/TTY) Web: www.parentinformationcenter.org Provides information, referrals, workshops and support to families of children with disabilities.

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Upper Valley Fatherhood Network 66 Benning Street, Suite 6 W. Lebanon, N H 03784 Telephone: (603) 443-5154 Serving men in the Upper Valley, the Fatherhood Network has individual assistance, as well as support groups discussing parenting, custody, discipline and many other topics of interest.

Easter Seals Autism Network, Family Support Program 555 Auburn Street Manchester, N H 03103 Telephone: (877) -6AUTISM (628-8476) The Easter Seals Autism Network Family Support Program offers the following services to support parents raising a child with an Autism Spectrum Disorder: Support Meetings, Seminars and Parent Education, Respite Program, Family Social Events, and more.

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Child and Family Services 99 Hanover Street Manchester, N H 03105 Telephone: (800) 640-6486 or (603) 518-4000 Web: www.cfsnh.org Offers many family support programs. Example: Parenting Plus, Families Connecting Family Skills. This program offers emotional support and practical solutions in managing family life. In home supports help to develop skills in areas of discipline, communication, budgeting, nutrition, conflict resolution and resourcefulness. There is no fee for this support. Offered through the following offices:

Child and Family Services/Manchester Child and Family Services, Nashua Telephone: (800) 640-6486 or (603) 518-4000 Telephone: (603) 889-7189

Child and Family Services, Concord Health First, Franklin Telephone: (877) 556-7479 or (603) 224-7479 Telephone: (603) 934-4885

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Child and Family Services, Littleton Telephone: (603) 444-0418

Family Support New Hampshire (FSNH) PO Box 64 Concord, N H 03302-0064 Email: [email protected] Web: www.fsnh.org FSNH acts to bring together the diverse leadership from existing and forming family resource centers and family support programs within New Hampshire under the common vision of establishing a statewide network of family support practice. Family Resource Connection NH State Library 20 Park Street Concord, N H 03301 Telephone: (800) 298-4321 or (603) 271-7931 Web: www.nh,gov/nhsl/frc The Family Resource Connection is a lending library with topics relating to families with children. Their website includes: an online Directory of Children's 253

Services and Family & Youth Development Calendar listing statewide workshops, classes, conferences and other events for professionals and families who provide care, health, and education for children

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Curriculum Vitae CONTACT INFORMATION Ann Kline 20 Sargent Road, Brookline, NH, 03033 Home: 603-672-0454 Cell: 508-561-5471 Email: [email protected] EDUCATION May, 2009 Boston University

Boston, MA

Post -Professional Doctor of Occupational Therapy (OTD) September, 2006 Boston University Boston, MA Post -Professional Master of Science in Occupational Therapy January, 2001

Quinnipiac University

Bachelor of Science in Occupational

Hamden, CT

Therapy

CERTIFICATIONS • • • • •

Certified New Hampshire Early Intervention Provider, July 2003 National Board Certification in Occupational Therapy: Registered Occupational Therapist Occupational Therapist, Commonwealth of Massachusetts Occupational Therapist, State of New Hampshire Sensory Integration and Praxis Test Certification

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EMPLOYMENT HISTORY Pediatrics: Responsibilities include/but are not limited to: •

Providing in-depth Occupational Therapy assessments/evaluations

•

Creating and maintaining treatment plans and goals related to therapy

•

Provide oral/written communication with family, medical staff and school staff, doctors, adaptive equipment vendors, wheelchair vendors and insurance companies.

January 2009-Present Staff Occupational Therapist (contracted position Nashua School District, Nashua, N H

through Clark

•

School based therapy in preschool aged classrooms

•

Occupational Therapy evaluation

•

Consultation to child's team

Associates)

December 2008-Present Staff Occupational Therapist (hourly) Groton Integrated Therapies (Private Pediatric Clinic), Groton, MA • Provide Sensory Integration based therapy/evaluation •

Clinic therapy, Consultation to child's team

•

Home based consultations/sensory based modifications in the home

261

Tanuary 2008-October 30, 2008 Staff Occupational

Therapist and member of feeding

team

Seven Hills Pediatric Center (Pediatric Nursing Home and onsite Special Education School) Groton, MA •

Provided Occupational Therapy services to children and adults who were medically fragile and dependent on all self care tasks

•

Member of Feeding Therapy Team

•

Created adaptive equipment, splints and adapted/modified wheelchairs

Tune 2006-Tanuary 2008 Staff Occupational Therapist/Feeding Team Member and Developer of First Pediatric OTISensory Integration Clinic in the Hospital Outpatient

setting

Southern New Hampshire Medical Center- Pediatric Occupational Therapy and Sensory Integration Clinic Nashua, N H •

Occupational Therapy treatment and evaluation

•

Member of Pediatric Feeding Team

•

Consultations to child's team

•

Responsible for Pediatric Occupational Therapy Budget/ Equipment purchasing

February 2005-Tune 2006 Occupational Therapist assisted in development of new clinic Easter Seals New Hampshire - The Family Place Sensory Integration Clinic, Raymond, N H •

Occupational Therapy treatment and evaluation

•

Responsible for creating clinic, school and community partnerships

•

Consultation to child's team 262

Tuly 2003-Febmary 2005 Occupational Therapist (covered maternity leave and then became staff member) School Administrative Unit 41 Brookline School District, Brookline, N H •

School based therapy in preschool aged classrooms

•

Occupational Therapy evaluation

•

Consultation to child's team

February 2003 - Tune 2003 Occupational Therapist (Per Diem evenings) Kidz Play Pediatric Therapy and Wellness Center, Londonderry, N H •

Provide Sensory Integration based therapy/evaluation

•

Clinic therapy, Consultation to child's team

•

Home based consultations/sensory based modifications in the home

December 2002-February 2005 Occupational Therapist (Per Diem) Sunrise Early Intervention Program through Regional Services and Education Consortium, Amherst, N H •

Home based Occupational Therapy treatment and team evaluations

•

Consultation to child's team

•

Transition/Placement meetings with local preschools/school districts

263

December 2002 - September 2003 Occupational

Therapist (coverage of Maternity

Leave)

Regional Services and Education Consortium: Sunrise Children's Center (integrated preschool setting), Amherst, N H •

School based therapy in preschool aged classrooms

•

Occupational Therapy evaluation

•

Consultation to child's team

September 2002 - December 2002 Occupational Therapist (contracted position) The Protestant Guild for Human Services - The Learning Center, Waltham, MA •

Occupational Therapy treatment and evaluation in residential and school based setting

•

Consultation to child's team

Tuly 2002 - August 2002 Occupational Therapist (contracted

position)

CNS Pathways Academy on Grounds of Mc Lean Hospital, Belmont, MA •

School based therapy for young men with Asperger's Syndrome

•

Occupational Therapy evaluation

•

Consultation to child's team

February 2002- Tune 2002 Occupational Therapist (contracted position) SAU#10 Derry Cooperative School District, Derry, N H •

School based therapy

•

Occupational Therapy evaluation

•

Consultation to child's team 264

March 2001 - February 2002 Occupational Therapist and Service

Coordinator

Valley Child Development Center Early Intervention Program, Milford, MA •

Home based Occupational Therapy treatment and team evaluations

•

Consultation to child's team

•

Transition/Placement meetings with local preschools/school districts

Medical

Rehabilitation:

Responsibilities include/but are not limited to: •

Evaluating patients referred for therapy

•

Developing goals and treatment plans per individual patient

•

Co-leading therapy groups

•

Providing consultation to family and clients

•

Providing Occupational Therapy treatment in home and hospital settings.

Tune 2006-Present Staff Occupational Therapist (per diem) Southern New Hampshire Medical Center Inpatient and Outpatient Departments, Nashua, NH Tune 2002-October 2005 and Tanuary 2009 to present Occupational Therapist (Per Diem) Saint Joseph Hospital Outpatient Rehabilitation Department, Nashua, N H Saint Joseph Hospital Inpatient Rehabilitation Department, Nashua, N H Senior Adult Mental Health Unit, Nashua, NH Souhegan Home Health and Hospice, Nashua, N H

265

PROFESSIONAL MEMBERSHIPS •

World Federation of Occupational Therapists

•

American Occupational Therapy Association

•

New Hampshire Occupational Therapy Association

SKILL American Sign Language

266