Connecting Connect Family Support is the Heart of our Mission. April - June, 2007
Volume 12 Number 2
Adaptive recreation Fun and fitness for all There are countless studies extolling the benefits of exercise and healthy recreational activities. Engaging in fitness activities can improve eye-hand coordination, dexterity, muscle strength, flexibility, cardiovascular health and provide a number of social and emotional benefits. Families sometimes find it difficult to locate appropriate physical or recreational activities for children with disabilities. As a result, children and youth may develop secondary physiological and emotional health conditions that impact their quality of life.
Recreation and leisure are part of a healthy lifestyle. Exposing children to varied activities and fostering awareness of physical fitness can require a good dose of creativity. Parents often find it difficult to discover and select appropriate resources for leisure or recreation activities, and to locate programs which offer needed accommodations and adaptations for participation. “This is perhaps the most overlooked area of a child’s development during the school year,” said Dawna Sterner, a Certified
Rafters enjoying the Colorado River during River Rampage, a program sponsored by The City of Phoenix Parks and Recreation
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Contents Adaptive recreation . . . . . . . . .1 From the Director . . . . . . . . . . .2 Calendar . . . . . . . . . . . . . . . . . .3 KidsCare . . . . . . . . . . . . . . . . . .6 Language change . . . . . . . . . . .8 Profile of Excellence . . . . . . . . .9
Contenido Recreación adaptativa . . . . . .10 Calendario . . . . . . . . . . . . . . .11
Recreational Therapist at the Children’s Center for Neurodevelopmental Studies. Sterner explained that evaluating physical skills, and addressing needs throughout the school year, can help prepare children for extracurricular and summer programs. Therapeutic Recreation is considered a “related service” under IDEA, and some services can be implemented through a students’ Individual Education Plan (IEP). Recreation, exercise and social activities for all children have evolved into more formally scheduled “programs”. Impromptu games with local neighborhood kids, and play sessions at the park, without having an adult present, — continued on page 4
From the Director… “Put me in coach, I’m ready to play” — John Fogerty, lyrics from "Centerfield" When children with disabilities are enrolled in sports and recreation programs designed to accommodate their unique needs, parents sometimes face a range of conflicting feelings. How much accommodation is too much? What kind of trade-off am I making if I choose a recreation program where my child has enough support to feel successful, but not very much contact with “typical” kids? Enrolling a child with disabilities in sports and recreation programs can involve a bit of soul-searching and anxiety, but so do most parenting issues. Some parents place a high value on the child being included in typical settings with non-disabled kids. They work very hard at communicating information about the child’s disability to the recreation program’s staff, and often provide substantial assistance with needed accommodations and support. Other parents want their children to develop a “peer network” of association with children who have disabilities. They believe the children‘s similarities and common experience will help forge friendships and social connections. I’m one of the parents who tried several options, and found that as long as the interests of the child are an important consideration, there are benefits from many different choices. Although I’m not sure I’ll ever forget one unfortunate experience in full inclusion which turned out to be a total disaster — the swimming lessons where a father asked in a loud and angry tone, “Is he coming back tomorrow? Because if he is, we won’t be here.” I also remember hearing a mother describe her daughter’s participation in a “show choir”, it’s a choral group in which the vocalists perform perform dance movements to music. Her daughter was unable to do the choreography, which is a required element of the state competition, and something on which they were being judged. Prior to the performance the judges were handed a letter, explaining that school administrators and the music director felt it was important to recognize and develop the talents of all their students, and they understood this meant a possible disqualification. Their performance earned the highest rating in the competition. Like so many things, life brings a mixture of failure and success. We won’t always have a level playing field, but if it’s fun and rewarding, our children will know it.
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Connecting is published quarterly by Raising Special Kids 2400 N. Central Avenue, Suite 200 Phoenix, AZ 85004 602-242-4366 • 800-237-3007 Fax: 602-242-4306 www.raisingspecialkids.org STAFF Joyce Millard Hoie Executive Director Marissa Huth Editor Peggy Storrs Director Business Operations Wendy Benz, Kathleen Collins, Kimberly Crook, Jennie Figueroa, Theresa Gloria-Palma, Dolores Herrera, Jane Nguyen, Jill Pearns, Twila Pochoema, Jodi Shah, Heather Snider, Kim Yamamoto, Margie Yaw-Mehlos, Bertha Yazzie BOARD OF DIRECTORS Jodi Feuerhelm, President Kevin Bonner, Vice President Tonya Gray, Secretary Heather Buchta, Treasurer Jim Cole Vickie French Miriam Hayenga Shirley Kaufman Rachel Palacio Susan Voirol Tim Watters Parent to Parent support is the heart of Raising Special Kids. Information about local services, educational programs, advocacy, or special health care needs is available in both Spanish and English. Services are provided at no charge to families in central and northern Arizona. Raising Special Kids is a 501(c)3 non-profit organization.
Raising Special Kids Calendar For a complete listing of calendar events, please visit our website at www.raisingspecialkids.org. If you require special accommodations to attend a Raising Special Kids sponsored activity, please notify us at least 48 hours in advance. Unless otherwise noted, all Raising Special Kids workshops and trainings will be held at 2400 N. Central Ave., Suite #200, Phoenix. For more information please call 602-242-4366 or 800-237-3007.
Raising Special Kids Hosted Events, Training & Workshops Call 602-242-4366 or 800-237-3007 to Register All workshops at Raising Special Kids are free of charge, but you must call and sign up if you wish to attend. If no one has signed up for a workshop, we will cancel it. IEP/504 An overview of IDEA and 504 plans for parents and professionals. Mon., Apr. 9, 1-3 pm Thur., Apr. 26, 9-11am Mon., May 14, 1-3pm Thur., June 7, 10-12 noon Wed., June 27, 1-3pm IEP Q & A Bring your IEP and questions you may have about the IEP. (limit 4 families) Wed., Apr 4., 9-11am Thur., Apr. 19, 10-12 noon Thur., May 17, 10-12 noon Mon., May 21, 1-3pm Wed., June 13, 1-3pm Resilient Families Learn ways to help your family “bounce back” and thrive in the face of challenges. Mon., Apr. 23, 10-12 noon Sat., May 19, 10-12 noon Can You Hear Me Now? Techniques for effective advocacy. What to ask, how to ask it. Mon., June 4, 10-12 noon Extended School Year What is it? How do you qualify? Thur., Apr. 5, 10-11am Wed., Apr. 18, 1-3 pm
Parents as Advocates An in-depth look at Special Education for families and how to advocate for students at school. Mon., April 23, 1:30-3pm Wed., June 13, 10-11:30am Thur., June 21, 10-1:30am Self Advocacy for youth Discussion of advocacy with youth and parents Mon., June 4 1-2:30pm Understanding Evaluations Develop a better understanding of the numbers on an evaluation and how to put the results to work in your child’s IEP. Wed., Apr 4., 10-11am Wed., May 9, 10-12 noon Mon., June 18, 1-3 pm High School Transition Preparing youth for transition from high school to post-secondary education, employment and life in the community. Thur., Apr. 12, 10-11:30am Mon. May. 7, 6-7:30pm Fri., May 18, 10-12 noon Mon., June 18, 1-3pm Preschool Transition Discussing the process of entering and moving beyond preschool. Mon., April 9, 10-11:30am Wed., May 23, 10-11:30 am www.raisingspecialkids.org
Inclusion What does inclusion mean? What are the pros and cons? How all children can learn together. Wed., Apr. 25, 1:30-3pm Volunteer Training Join us for a dynamic introduction for volunteering for Raising Special Kids. Wed., May 16, 10-12 noon Fri., June 22, 1-3 pm NICU Volunteer Training Sat., Apr., 21, 10 am Sat., June 16, 10 am Health Care Systems Overview Learn about health insurance systems and how to successfully navigate them. Wed., Apr. 11, 10-12 noon Wed., Apr. 11, 12:30-2:30 pm Tue., Apr. 17, 1-3 pm Dad’s Network For men, by men—fathers, grandfathers, uncles of children with special needs. Shiloh Community Church Activity Center 19021 N. 32nd St., Phoenix, AZ. Call Ray Morris 602-569-7011. See page 11 for workshops in Spanish. 3
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now seem rare and unusual. Classes, day camps, sports leagues and other organized recreational options fill the pages of parenting magazines, event calendars, and summer planning guides. Many families choose these kinds of activities to provide their children with a healthy, safe environment where they can develop their interests, social skills and physical fitness. For parents of children with special health needs, finding appropriate activities for their children to have fun, be physically active, and feel welcome is more complex than choosing from a list of programs designed for particular age groups. One mother noted that by the time her “tween-age” child had achieved enough coordination to enroll in dance lessons, she was somewhat older than other kids in most beginner level classes, but not yet eligible for adult classes. Locating activities for a child with a disability which combine the right blend of age, skill and interest can raise lots of questions. In some cases, the answer may be adapted recreation. Adapted or adaptive activities, including organized sports, are those in which the equipment, rules or environment have been modified to enable participation for people with disabilities. Adaptations are available for a Adapted or adaptive activities, including organized sports, are those in which the equipment, rules or environment have been modified to enable participation for people with disabilities.
wide spectrum of interests that range from more “extreme” types such as skiing or kayaking, to qui4
eter varieties such as gardening or yoga. Sean Storrs, a veteran global traveler and self advocate, has found many people and programs are happy to help with accommodations if asked. “When I went bungee jumping and tandem skydiving in New Zealand, the staff members at each location weren’t
Phoenix offers several outdoor programs for teens through its awardwinning Adaptive Recreation Services. Increased awareness and advocacy by families and communities have led to improved accessibility in parks, playgrounds, ball parks and other public facilities. The newly constructed Miracle League field in Surprise, Arizona (tentatively named Dreamcatcher Park) is an accessible field with a textured surface designed to 'give' and allow for easy maneuvering by players using wheelchairs or Dan Hall, Vice President of the Sun Lakes anglers Club other assistive helps a novice angler during one of the groups’ Fishing devices. (For more Derbies for children with special needs. information contact 480.626.0211 or particularly fazed by the fact that I
[email protected].) was in a wheelchair. They were The Americans with Disabilities more than willing to do what was Act (ADA) has spurred the use of needed to ensure that I could paruniversal design principles and ticipate. Some slight procedural accessibility solutions in playadjustments needed to be made in ground equipment, parks and other both cases, but ultimately, I had the public recreation facilities. ADA is same experiences that everyone a comprehensive civil rights law else did on the tour group, for that prohibits discrimination on the those who were brave enough to basis of disability. Organizations defy gravity.” such as the National Center on While bungee jumping may not Accessibility (NCA) are a resource be your child’s first choice, finding for linking the preferences and any appropriate program for sumneeds of people with disabilities to mer or after school can be a chalthose of practitioners designing lenge for many parents. Some facilities and planning programs. activities are sponsored by nonAn excerpt from an article pubprofit, civic or hobby groups such lished by CureOurChildren.org as The Sun Lakes Anglers Club includes comments by Tip Ray, an which hosts fishing derbies for author, advocate, and inclusive children with disabilities several recreation specialist: "Equal access times a year. Programs can freand opportunity is a civil rights quently be found through city issue," he said. "Including children parks and recreation departments. with disabilities in recreation expewww.raisingspecialkids.org
riences typical for peers without disabilities is legally mandated in state and federal school and civil rights legislation. Using cost of safety as an excuse to exclude them is discriminatory. A recreation program that is well organized and run should recognize the diversity and 'special needs' of every child enrolled, and take into account issues of cost and safety for all participants. Agencies must budget for the eventuality that a sign language interpreter or an extra staff member to act as an aide may be needed. If safety is a concern for one child, it's a concern for all and must be anticipated during the program planning phase." (http://www.cureourchildren.org/sp orts.htm) Parents may find that sometimes program staff need assistance in understanding ADA requirements. Training is readily available, and online resources such as the U.S. Small Business Administration (http://www.sba.gov/ada/) provide comprehensive information. Safety should always be top priority in choosing programs — good coaches and properly trained staff are essential to children’s success. When choosing activities, encourage the staff to focus on what a child can do, rather than limitations. It’s a good idea to visit programs with the child prior to enrollment. Be sure to start your search early to improve your chances of finding the best choice for your child in recreation and summer programs.
Desert Challenge Games April 19 - April 22, 2007
Arizona State University, Joe Selleh Track Hosted by Arizona Disabled Sports
The Desert Challenge Games are for any competitive athlete with a permanent physical disability ages 6 thru adulthood. The Regional Games include competition in: aquatics, archery, boccia ball, field, shooting, track, weight-lifting and wheelchair basketball. Educational clinics will exist this year for athletes and professionals including: classification, cycling and tennis. This event is sanctioned by Wheelchair Sports USA and may qualify an athlete for National competitions. For more information contact Susan Byrne Rossi at 480) 644-5702 or
[email protected] or visit: http://www.desertchallengegames.com/
Valley programs River Rampage is an outdoor adventure program for young people who face significant life challenges. It's run by the City of Phoenix Parks and Recreation Department, with additional support from River of Dreams, a non-profit organization. Weeklong trips are offered each summer under the supervision of adaptive recreation services staff and volunteer mentors. Also ask about Daring Adventures a program that offers seven outdoor recreation opportunities for teens and adults with disabilities and their non-disabled peers. For more information, call 602262-4543 (voice) or 602-534-2491 (TTY), or E-mail:
[email protected]. Mesa Association of Sports for the Disabled (MASD), also known as Arizona Disabled Sports, offers opportunities for people with physical and/or cognitive disabilities throughout Arizona. (Note the announcement for the Desert Challenge Games above.) For more information call (480) 644-5702. Some independent sports or recreation programs offer options with appropriately trained staff. Researching individual programs may yield some less well-known opportunities or alert program directors of interest in the community. Deanne Fay, a physical therapist at Funastics in Gilbert, noted “I have some flexibility to work within the needs of families. Right now I have a single class, but we can add additional classes if we get more interested families.” Funastics describes their program as “designed to provide a fun, group atmosphere where children with physical disabilities can work on fitness, coordination, strength, and motor skills of all levels while building self confidence and self-esteem. The classes are taught by a physical therapist who is a board certified pediatric specialist, while physical therapy students in the 3rd year of the doctoral program help provide hands-on assistance.” www.raisingspecialkids.org
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Covering Kids
Health
Arizona’s KidsCare program The issue of children’s health care coverage has been getting more attention recently in political arenas. State governors and legislators, frustrated by the perceived lack of progress at the federal level, are creating their own solutions to the issue of uninsured children. Here is some background on children’s health coverage in our state and at the federal level.
State Children’s Health Insurance Program (SCHIP) SCHIP “S-chip” was created in 1997 to provide health coverage to uninsured low-income children whose families make too much money to qualify for Medicaid, typically up to 200% of the Federal Poverty Level (“FPL”). Funding comes from both the state and federal governments, with states designing and administering their own programs within broad federal guidelines. This year, SCHIP is up for reauthorization by Congress and additional money is needed to enroll all eligible kids and keep up with medical costs; current program funding expires on September 30th. According to U.S. Census data, a majority of the estimated 9 million uninsured children in the U.S. are eligible for, but not currently enrolled in, SCHIP or Medicaid.
• 200% Federal Poverty Level $3,334 monthly income for a family of four. • For every 23¢ of state money spent on KidsCare, Arizona receives approximately 77¢ from the federal government. Arizona’s SCHIP program, KidsCare, provides health coverage to children in families whose income is less than 200% FPL. As of December 2006, 58,246 Arizona children received health insurance through KidsCare. The state’s Medicaid program, AHCCCS, administers KidsCare. 6
Nearly 250,000 children in Arizona do not have health insurance—that's 3,500 school busloads of kids. Of Arizona's children with special health care needs: • 15.3% had no health insurance during part of the year. • 30.4% had inadequate health insurance coverage • 20% live in households with income between 200-299% FPL -- so, they would be eligible for KidsCare coverage if the program were expanded. Of these children, 16% were uninsured during part of the year, and 25% had inadequate health insurance coverage. source: National Survey of Children with Special Health Care Needs, 2001
Some states like Massachusetts, Vermont and Maine currently have programs to insure all children. In the past year, other states have started to follow this example. According to one state legislator, the plan to expand coverage makes fiscal sense: the state could provide several years of health insurance for a child at the same cost as one visit to the emergency room by a child who did not receive preventive care. In her January 2007 “State of the State” address, Arizona Governor Janet Napolitano proposed increasing the KidsCare eligibility limit to 300% FPL, or $60,000 annual income for a family of four. She also addressed the need to increase funding for KidsCare outreach to boost enrollment of children who are currently eligible but not covered by the plan. More than 58,000 children in Arizona are insured under KidsCare. For more information on KidsCare and Arizona’s children, see: • Raising Special Kids’ KidsCare fact sheet: http://www.raisingspecialkids.org/PDFs/FactSheet-KidsCare.pdf • Children’s Action Alliance’s “Covering Kids” webpage at http://www.azchildren.org
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Expanding KidsCare Raising Special Kids joins community call-to-action Raising Special Kids joined more than 30 local organizations in February to ask state lawmakers to strengthen children’s health coverage. A wide array of interests were represented by educators, the faith community, seniors, business leaders, health providers, tribal leaders and other community and children’s organizations. Copies of a citizen petition was distributed to legislators that calls on the legislature to increase access to health care for children in working families. “So far this session, the conversation about children’s health coverage has not addressed the heart of the problem,” said Dana Wolfe
Naimark, President/CEO of Children’s Action Alliance. “Health coverage for children is an investment in our future by helping children get the care they need to stay healthy, succeed in school and thrive in life. We hope that the hundreds of signatures on the petition and the thousands of Arizonans represented here today will send that message loud and clear.” Lack of health insurance impacts a child’s ability to learn, forces families to seek care in the emergency room when it is less effective and more costly alternative, and hurts Arizona’s economy. This event brought together a
diverse group of Arizonans to urge the legislature to expand KidsCare to more children by broadening the program and increasing outreach and enrollment efforts. KidsCare has been successful in decreasing the number of uninsured children in Arizona, but there are still 250,000 children without coverage. Strengthening KidsCare will give more children the medical care they need without putting a burden on emergency rooms and adding to the hidden tax of the uninsured. (Currently, insured families pay approximately $1300 in added costs of health care premiums.)
Legislative Awareness Day (Right) LaDonna Jacket brought her daughter to participate in the activities.
(Above) Representative Albert Tom talks with Raising Special Kids Hopi Tribal Liaison,Twila Pochoema.
(Above) Members of GANE, including Raising Special Kids volunteers pose for a group photo. (Left) Two junior self advocates take a break in front of the Capitol Building.
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(Above) Senator Jack Harper listens to Raising Special Kids staff, Kim Yamamoto.
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“Mental Retardation” Is No More
Arizona
Journal’s new name is Intellectual and Developmental Disabilities
New language of respect
Name change reflects society's efforts to appropriately address people with cognitive disabilities
Arizona acknowledged the importance of using appropriate language in referring to every person when it became one of the first states to enact legislation replacing the use of the words “mental retardation” with the term “cognitive disability” beginning in September of last year.
After almost five decades of being called Mental Retardation, an influential journal in special education changed names to Intellectual & Developmental Disabilities. The journal's name change is a microcosm of society's ongoing struggle to find a socially acceptable way of addressing persons with an intellectual disability. The new name comes close on the heels of the name change of its publisher, the American Association on Intellectual and Developmental Disabilities, formerly AAMR, the world's oldest organization representing professionals in developmental disabilities. For all those who ask, "What's in a name?", Editor Steven J. Taylor says, "The term intellectual and developmental disabilities is simply less stigmatizing than mental retardation, mental deficiency, feeble-mindedness, idiocy, imbecility, and other terminology we have cast aside over the years." However, Taylor acknowledges that the crux of the issue here goes beyond language and terminology into the deeper issues of inclusion and acceptance of people with intellectual disabilities in society. He explains, "Anyone who believes that we have finally arrived at the perfect terminology will be proven wrong by history. I am sure that at some future point we will find the phrase intellectual and developmental disabilities to be inadequate and demeaning." Vice-president of AAIDD, Steve Eidelman, like many other experts, goes a step further and calls for a public education campaign to foster more positive attitudes towards people with intellectual disabilities. In an article published in a past issue of IDD, he said, "Changing the term (mental retardation) will make many people happy. That happiness will quickly fade when the new term is used as a pejorative. Without a longterm effort to include everyone and to educate those with negative or neutral attitudes toward our constituents, a change in terminology will become the new pejorative very quickly." Eidelman's comments were made in the midst of a debate on the name change of AAMR to its current day name, AAIDD. American Association on Intellectual and Developmental Disabilities 444 North Capitol Street NW Suite 846, Washington, D.C. 20001-1512 Tel (202)387-1968 | Fax (202)387-2193 | http://www.aaidd.org/
QUICK TIP
Behavior
Theresa Moore is a self advocate with the Governor’s Council on Developmental Disabilities which lead the drive for this legislation, and she is a former member of Self Advocates Becoming Empowered (SABE) a national advocacy organization that has promoted similar changes throughout the country. Moore commented on the importance of People First Language, “Changing the name has been a movement for a long time. It’s a huge deal to not use negative language when talking about people with disabilities.” The Council’s fact sheet on the legislation notes, “As a result of efforts by self advocates, society is beginning to shift attitudes about people with disabilities, focusing more on abilities, self determination and the need to guarantee human dignity, including equal regard and equal rights.”
What really works?
Provide real options. Instead of presenting your child with a choice between doing it your way or being punished — at which many kids with special needs, whether due to oppositional tendencies, impulsiveness, or fear of uncertainty will automatically choose the punishment — try to present a choice between two options that would both be agreeable to you. Saying "Put on your shoes right now or you're in big trouble!" may be less likely to bring compliance than, "Which do you want to put on first, your shoes or your jacket?" Reprinted with permission from “Choosing Your Battles” by Terri Mauro , About: Parenting Special Needs,
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Volunteer Profile of Excellence Leslie Williams
Parent-to-Parent connecbecoming a parent helping tions, outreach presentations, other parents, and moving into special events, fundraising and parent leadership roles which six years on the Board of helped give her the confidence Directors culminating with her to successfully serve as Board term as President—in the 21 President. “My time as a volyears Leslie unteer has Williams has volgiven me a unteered for lot of Raising Special courage to Kids, she has done try new it all! We rememand differber her accoment things plishments with and to tell sincere gratitude as she passes the torch on to our new board officers. (Above) Leslie Williams Leslie recounted (Right) Michael Williams celebrates starting with Raising winning his gold Special Kids as a medal. parent in need, then
other parents of my experiences and how I stepped through them to where I am today,” she said. Leslie is also a veteran of Special Olympics programs and has avidly supporter her son, Michael, and many other athletes in the games for many years. She was proud to celebrate Michael’s athletic accomplishnments at the 2005 Special Olympic Games in Nagano, Japan where he won a gold medal in speed skating.
Special Olympics A Parent’s Perspective by Leslie Williams So Michael, what do you like about Special Olympics? "The cheering and clapping and everything" says Michael. And he really does love the celebrity status that comes with being a Special Olympian. Not enough can be said about the effect of a cheering crowd on an athlete's ego and for my Special Olympian it is no different. It's hard to believe that I was so stand offish about introducing Michael to Special Olympics. Yet since he enrolled during elementary school, I and Michael's father and sister spend every sport sea-
son cheering and applauding Michael and his fellow Special Olympians from the stadium stands. Michael, likes to compete, and he loves to win. Special Olympics and other therapeutic recreation programs are a year round activity for Michael and his cheering family. Bowling, track and field, golf, ice skating, challenger baseball, swimming, and several others — it keeps us all very busy and Michael very happy. As a participant in the special sports programs, Michael has made so many friends throughout www.raisingspecialkids.org
the state and they are proving to be life long ones. He and his buds go to the movies, weekly bowling, dances, and fishing, hang out at each other's home and play video games and his favorite thing to do, talk on the phone. There is nothing like hearing the Olympic theme play and to see our athletes on the podiums to get their medals and ribbons. There is nothing like seeing the proud look of these athletes standing there knowing how great their accomplishment is. And yes, it is even better as we cheer and applaud them all. 9
Español
Recreación adaptativa
Diversión y buena forma física para todos Hay innumerables estudios que exaltan los beneficios del ejercicio y de las actividades recreativas saludables. Participar en actividades para mejorar la condición física puede mejorar la coordinación de la mano con la vista, la destreza, fuerza muscular, flexibilidad y salud cardiovascular, y proporcionar diversos beneficios sociales y emocionales. Las familias a veces encuentran que es difícil localizar actividades físicas o recreativas apropiadas para niños con discapacidades. Como resultado de ello, los niños y jóvenes pueden desarrollar padecimientos secundarios de salud fisiológica y emocional que afectan su calidad de vida. Exponer a los niños a actividades variadas y fomentar la consciencia de una buena condición física puede requerir una buena dosis de creatividad. Con frecuencia es difícil para los padres descubrir y seleccionar recursos apropiados para el tiempo de ocio o actividades recreativas, y localizar programas que ofrecen el alojamiento y adaptaciones necesarios para la participación. “Esta es tal vez el área más ignorada del desarrollo de los niños durante el año escolar”, dijo Dawna Sterner, Terapeuta Recreativa Certificada del Centro Infantil de Estudios para el Desarrollo Neurológico. Sterner explicó que evaluar las habilidades físicas y atender las necesidades durante el año escolar, puede ayudar a preparar a los niños para programas extracurriculares y veraniegos. La Recreación Terapéutica es considerada un “servicio relacionado” de acuerdo con IDEA, y algunos servicios pueden ser implementados a través del Plan Educativo Individual (IEP por sus siglas en inglés) de los estudiantes.
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La recreación, el ejercicio y las actividades sociales para todos los niños han evolucionado en “programas” más formalmente programados. Los juegos improvisados con niños locales del vecindario y las sesiones de juego en parques sin tener a un adulto presente, ahora son raras e inusuales. Las clases, los campamentos diurnos, las ligas deportivas y otras opciones recreativas organizadas llenan las páginas de las revistas sobre la crianza de los niños, los calendarios de eventos, y las guías para la planeación del verano. Muchas familias eligen esta clase de actividades para proveer a sus niños un ambiente saludable y seguro donde puedan desarrollar sus intereses, habilidades sociales y bienestar físico. Para los padres de niños con necesidades especiales de la salud, encontrar actividades apropiadas para que sus niños se diviertan, estén físicamente activos y se sientan bienvenidos, es más complejo que elegir de una lista de programas diseñados para grupos particulares de edad. Una madre señaló que cuando su niña pre-adolescente había logrado suficiente coordinación para incorporarse a lecciones de danza, ya era algo mayor que los niños en la mayoría de las clases a nivel principiante, pero aún no era elegible para participar en las clases para adultos. Localizar actividades para los niños con discapacidades, las cuales combinen la mezcla correcta de edad, habilidad e interés puede generar muchas preguntas. En algunos casos, la respuesta puede ser la recreación adaptada. Las actividades adaptadas o adaptativas, incluyendo deportes organizados, son aquellas en las que el equipo, las reglas o el ambiente han sido modificados para permitir
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la participación de personas con discapacidades. Hay adaptaciones disponibles en un amplio espectro de intereses, que van desde los más “extremos” como esquiar y andar en kayak, hasta variedades más tranquilas como jardinería o yoga. Sean Storrs, veterano viajero global y auto-defensor, ha encontrado que muchas personas y programas se sienten felices de ayudar con las instalaciones adecuadas si se les pide. “Cuando fui a saltar en correas (bungee) y lanzarme en caída libre en tándem en Nueva Zelanda, los miembros del personal en cada ubicación no se sentían particularmente desconcertados por el hecho de que yo estaba en una silla de ruedas. Estaban más que deseosos de hacer lo que fuera necesario para asegurar que yo podría participar. Fue necesario hacer algunos ligeros ajustes de procedimientos en ambos casos, pero en última instancia, tuve las mismas experiencias que todos los demás en el grupo de viaje, para aquellos que son lo suficientemente valientes como para desafiar la gravedad.” Si bien el salto en bungee puede no ser la primera elección de su niño, encontrar un programa apropiado para el verano o para después de la escuela puede ser un reto para muchos padres de familia. Algunas actividades son patrocinadas por grupos no lucrativos, cívicos y de pasatiempos como el club Sun Lakes Anglers Club, que patrocina arias veces al año, competencias de pesca para niños con discapacidades. Frecuentemente se pueden encontrar programas en los parques y departamentos de recreación de la ciudad. Phoenix ofrece varios programas al aire libre para jóvenes, a través de sus Servicios Recreativos Adaptativos ganadores de premios.
Español Recreación adaptativa Diversión y buena forma física para todos
Una mayor consciencia y propugnación de la defensa de discapacitados por parte de familias y comunidades, han conducido a una mayor accesibilidad en parques, patios de juego, parques de pelota y otras instalaciones públicas. El recientemente construido parque Miracle League en Surprise, Arizona (llamado tentativamente Dreamcatcher Park) es un parque accesible con una superficie texturizada diseñada para 'dar', prevenir saltos malos, y permitir que puedan maniobrar fácilmente los jugadores en sillas de ruedas o que usan otros aparatos de ayuda. (Para más información llame al 480.626.0211 ó visite
[email protected].) La Ley de Americanos con Discapacidades (ADA por sus siglas en inglés), ha alentado el uso de principios universales de diseño y soluciones de accesibilidad en equipos de campos de juego, parques y otras instalaciones públicas recreativas. ADA es una ley global de derechos civiles que prohíbe la discriminación basada en una discapacidad. Las organizaciones como el Centro Nacional de Accesibilidad (NCA por sus siglas en inglés), son un recurso para ligar las preferencias y necesidades de personas con discapacidades con las personas de diseño de instalaciones de médicos practicantes y programas de planeación. Un pasaje de un artículo publicado por la organización CureOurChildren.org incluye comentarios de Tip Ray, autor, defensor y especialista en recreación inclusiva: "El acceso igualitario y las oportunidades equitativas son un asunto de derechos civiles", él dijo. "Incluir a niños con discapacidades en experiencias recreativas típicamente para compañeros sin discapacidades, es exigido legalmente en la legislación
escolar federal y otra legislación de derechos civiles. Usar el costo de la seguridad como una excusa para excluirlos es discriminatorio. Un programa de recreación que esté bien organizado y funcione debería haber reconocido la diversidad y las ‘necesidades especiales’ de cada niño inscrito, además de tomar en cuenta asuntos de costo y seguridad para todos los participantes. Las agencias deben contar con un presupuesto para la eventualidad de que en alguna ocasión pudiese necesitarse un intérprete de lenguaje a señas o un miembro extra del personal para actuar como asesor. En cuanto a la seguridad, si es una preocupación por un niño, es una preocupación para todos, y debe preverse y abordarse durante la fase de planeación del programa." (http://www.cureourchildren.org/spor ts.htm) Los padres de familia pueden encontrar que a veces el personal del programa necesita ayuda para entender los requerimientos de la ADA. Hay capacitación y recursos disponibles en línea que proveen información completa, como la Administración de Pequeños Negocios de los Estados Unidos (http://www.sba.gov/ada/). La seguridad debe siempre ser la principal prioridad al elegir programas — buenos entrenadores y personal apropiadamente capacitado son esenciales para el éxito de los niños. Cuando elija actividades, recomiende al personal que se enfoque en lo que su niño/a pueda hacer, en lugar de enfocarse en sus limitaciones. Es una buena idea visitar los programas con el/la niño/a antes de inscribirlo/a. Asegúrese de iniciar su búsqueda con suficiente anticipación para mejorar sus oportunidades de encontrar la mejor elección en programas veraniegos y recreativos.
www.raisingspecialkids.org
CALENDARIO ESPAÑOL Por favor llamar al 242-4366 o al 800-237-3007 para confirmar su asistencia a los talleres IEP/504 Una perspectiva general de Educación Especial y de los planes 504. Viernes, 13 de abril, 1-3 pm Viernes, 11 de mayo, 10-12 1-3pm Sabado, 16 de Junio, 9-11am
El Comportamiento Positivo El vinculo entre las familias y las intervenciones y el apoyo conductual positive es muy importante Viernes, 27 de abril, 10-12 pm
UN ENTRENAMIENTO PARA VOLUNTARIOS Acompañenos a un entrenamiento para voluntarios y asi desarollar su liderazgo ayudando a otras familias a aceptar y sobrellevar el diagnostico de un hijo (a) con necesidades especiales de salud. Martes, 22 de mayo, 1-3pm Martes, 19 de junio, 1-3pm Grupo de apoyo para padres (hombres) Grupo de padres (hombres) con hijos con necesidades especiales. Para más información, lláme al 602-242-4366, Lugar: La Oficina de Raising Special Kids (Criando Niños Especiales) EN ENTRENAMIENTO SERA EN ESPAÑOL 11
Worth Noting Partners in Policymaking
NICU notes
Accepting applications for the fall session
(Top) Jennifer Hamblin, NICU Social Worker visits with new mom, Dusty Nowlin and her baby. Jennifer coordinates activities with Raising Special Kids NICU program staff and volunteers to offer families support while they are in the NICU and after bringing their baby home. (Left) Tasha Robison has had Aubrey home for a little over a week after 98 days in NICU. She related how how important the staff was in helping her begin to learn how to advocate for her daughter. Her experience inspired a new goal of becoming a NICU nurse.
Quotable: After a recent press conference (see page 7), a member of Raising Special Kids’ staff greeted a parent leader who had presented her story to the audience. Her response was: “Raising Special Kids? I love you guys. You were the only door that opened for me. You helped me with my daughter’s school situation and getting help with her 504 Plan. Thank you so much!” 12
www.raisingspecialkids.org
Partners in Policymaking is a free leadership training program designed for individuals who have a disability and for parents raising children with a disability. The program is offered by Pilot Parents of Southern Arizona and provides information on disability policy, the legislative process, and local, state and national issues that affect individuals with disabilities. Parents can learn leadership and advocacy skills and how to affect systems and policy change at the local, state and national levels. The goal of the program is to foster a partnership between people who need and use services for disabilities, and those who determine public policy. The program will include seven two-day sessions located in Chandler, Arizona. The application deadline is June 29th for the 20072008 class beginning in September. "Partners was one of the best things I have ever done. It helped me learn how to navigate and change current systems. I gained knowledge and learned about resources I needed to effectively advocate for my son," said Kimberly Crook, a graduate of 2006. A limited number of participants will be selected. The program seeks highly motivated and committed men and women who represent diverse ethnic backgrounds, various disabilities, and various geographic regions of the state. Applications are available online at http://www.pilotparents.org/partners.htm or call Pilot Parents at 1-877-365-7220.
Community Notes The Arizona Technology Access Program (AzTAP)
A program of Northern Arizona University’s Institute for Human Development In collaboration with the Arizona
The 10th Annual Assistive Technology Summer Institute Training in the Saguaros
Assistive Technology:
From Generation to Generation June 25 – 26, 2007 Wigwam Resort and Golf Club Litchfield Park, Arizona For more information or a registration form visit www.nau.edu/ihd/aztap or call 602-728-9534 (voice), 602-7289536 (TTY), 800-477-9921 (toll-tree) Early registration by May, 2007
New AT exchange website Buy or sell assistive technology devices for free The Arizona Assistive Technology Access Program is very pleased to announce the launch of our Assistive Technology Exchange website (ATEX) - www.AZATEXchange.org. Our goal is to provide an online forum for individuals to place ads to donate, buy, sell, exchange or advertise a need for a piece of assistive technology (AT). AzTAP hopes that this website will provide a platform to help put unneeded assistive technology into the hands of someone who could benefit from it. Assistive technology is defined as any item, piece of equipment or product system that is used to increase, maintain or improve the capabilities of individuals with disabilities. There are no charges or fees to post an ad on the ATEX website. For additional information about the ATEX program or for assistance with placing an ad, please contact Clayton Guffey – Assistive Technology Specialist at AzTAP at 602.776.4699, toll free at 1.800.477.9921 or by email at:
[email protected]. www.raisingspecialkids.org
D I D YO U K N O W ?
Department of Education & Rehabilitation Services Administration announces:
i711.com is a relay service that allows deaf and hearing impaired callers to communicate without special equipment on either end of the line. Anyone can place a call, for free, and type the information they want an operator to read to the person they're calling. Register with i711.com and additional services become available, including video calls, an 800 number hearing callers can use to initiate contact, address books, and the ability to use i711.com through instant messaging services. The site also offers a variety of deaf news from various sources, and other community features.
Social Security number safety There have been some reports in other states of children’s social security numbers being stolen, jeopardizing their Medicaid coverage, SSI checks, etc. Arizona is top in the country for identity fraud. Remember to take precautions with your child’s number—it may appear on a variety of documents. If a social security number is stolen, you can file a complaint with the Federal Trade Commission by contacting: www.consumer.gov/idtheft 1-877-IDTHEFT (1-877-438-4338) TTY— 1-866-653-4261 If you think someone is using your number for work purposes, you should contact Social Security. One way to find out whether someone is using a number in order to work is to check your Social Security Statement (http://www.ssa.gov/mystatement/).
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Raising Special Kids News Conference update Alexa Posny, Director Director of the Office of Special Education and Tom Horne, Arizona’s Superintendent of Public Instruction, will be featured speakers at the Region 5 Conference for Parent Training and Information (PTI) in Phoenix beginning May 2nd, 2007. Raising Special Kids is Arizona’s Parent Training and Information Center and is helping to host the event. Parent centers were authorized by Congress under the Individuals with Disabilities Education Act to provide training, information and assistance in special education to families and schools. Raising Special Kids serves Arizona’s families of children and youth with all disabilities. With referrals from professionals and state agencies, Raising Special Kids had contact with over 8,000 parents and professionals in the past year. “We are looking froward to welcoming two prestigious voices in the field of education to address families on special education,” said Joyce Millard Hoie, Executive Director of Raising Special Kids.
Parent panel
Raising Special Kids volunteers participated on a Parents Panel to present their perspective on having a child in Special Education to a class in the education program at Paradise Valley Community College. Parent Panels are a key source of knowledge for students in education programs learning to teach children with disabilities and communicate effectively with families.
Kids in Transition Need You... to share your experience via our Transition Survey As we work to improve transition services for young adults, we are seeking input from parents of youth ages 13 and over. Raising Special Kids is compiling data on the effectiveness of current services and gather feedback on what improvements families would like implemented. To contribute your opinion, please consider taking about 5 minutes to participate in our survey. It is available in print or online by visiting our website www.raisingspecialkids.org. To request a printed copy by mail, please call Ralph at 602242-4366 or 800 237-3007.
Northern Arizona office To reach Raising Special Kids staff in Flagstaff, please call: Kathleen Collins 928-5234870
Center for Community Inclusion, Involvement, and Interaction Raising Special Kids has been invited to participate in an initiative with Bob and Ruth Lavinia, parents of an adult with learning disabilities, and ASU's College of Education to develop a comprehensive Center for adults with learning challenges. Services for students are typically administered by the school prior to age 22, but there is a critical need for a coordinated system for delivery of services to promote independence and community integration for individuals over age 22. We look forward to seeing more opportunities for comprehensive, individualized assistance that promotes self-determination and community integration for adults with disabilities. 14 www.raisingspecialkids.org
In The Spotlight Volunteers are the Heart of Raising Special Kids Thank You!
Making a Difference in the Lives of Children Thank You for referring families to Raising Special Kids
Volunteers of January -February, 2007
January -February, 2007
Chandler Kelly & Ray Theresa GloriaMorris Palma Gayle Nobel Yvonne Wilson Madeline Papazian Gilbert Katie Petersen Monica Hulsey Britt & Charlotte Jeanne & George Reed Hulecki Nannette Salasek Glendale Carolyn Warden Marge Dalen Belinda Gardner Scottsdale Cara Denby Danielle Martinez Shauna Mattson Marci Monaghan Julie Sherman Goodyear Kris Wahl Anne Dennis Sun Lakes Mesa Philip Sanabria Sharie Campbell Iris Sanabria Nancy Garner Tempe Kathleen Rahill Teresa (Eric) Jori Udall Devine Peoria John Mclaughlin Phoenix Paula Banahan Hermelinda Barrios Maryanne Doty Alejandra Garcia Chris Jones Nancy Licht Kathy Mcdonald Diane Mooneyham
Did you know?... You can designate your United Way contribution for Raising Special Kids. Enter our name and the number 0314 on the pledge form. Connecting is now available by email. Just call us at 602-242-4366 or email to
[email protected]
Arizona Dept Of Health Services Marta Urbina Arizona Dept. Of Education - PINS Sharon Moeller ASCC AZEIP Banner Desert Medical Center Pam Lambert Banner Desert Medical Center - NICU Cartwright School District Rhonda Hancock Children's Rehabilitative Services Crismon Elementary Lisa Watkins Dr Cunningham Ladonna Dalton DDD Tawnya Allday Nery Alvarado Ruthann Bilkey Cindy Bordeaux Sarah Bravo Jason Brothers Gloria Bustos Kathleen Calder Francine Emrick Karla Euceda Jones Maria Fernandez Kathi Guildig Katherine Hartnett Kristen Heninger John Millard Laura Miller Clay Muschinski Gina Niccum Karen Patten Teresa Pfaff Yolanda Potter Linda Ramsey Charity Rich Carolyn Ross Kizzy Sepuleda Carla Spector Jodi Stein Ernestine Thompson Carmen West Lateef West Lisa Yazzie
DDD Flagstaff Emily Center Ana Gonzalez Paul First Presbyterian Church For Success School Gateway Academy Robin Sweet Hopi Office Of Special Needs Rhonda Talaswaima Knights Of Columbus Council 9678 Labor Force Listening Ears Clinic Make A Wish Mayo Clinic Az Kate Helms Tillery Dr Mary McGee Kelly Morris NAMI Northern Arizona University NAZASA NCAL NCDL NICHCY Paradise Valley Community College Debbie Voll Peoria Unified School District Phoenix Baptist Hospital Lynn Woznyru Phoenix Childrens Hospital Tom Dusbabek Lori Vitagliano Phoenix Pediatrics Karen Wright SARRC Grisselle Simpson Social Security St Joseph's Hospital Joe Walwork Value Options Volunteer Center Womens Resource Center Liz Avila Dr Tina Young
Our thanks and appreciation to the Knights of Columbus for generous their gift of $1,100, raised by the Sun Lakes Council to support families of children with developmental disabilities. www.raisingspecialkids.org
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RAISING Special Kids 2400 N. Central Avenue, Suite #200 Phoenix, AZ 85004-1313
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4 1 l i Apr
Mark your calendar for
A Special Day for
Special Kids! Sponsored by Scottsdale Sunrise Rotary Club and Scottsdale Unified School District Service Learning Classes
Saturday, April 14, 2007 10 am - 2 pm McCormick-Stillman Railroad Park, Scottsdale
(located on the southeast corner of Indian Bend and Scottsdale roads)
Co-sponsors include Raising Special Kids Rides, clowns, fun, FREE! www.raisingspecialkids.org