Developmental Disabilities Leadership Forum: Leadership Perspectives in Developmental Disability: An on-line Journal for Consumers, Professionals, Family and Friends
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Volume 3 , Issue 1 Date: Spring, 2003 Topic: Expectations Through Life's Passages

SAY What?: Self Advocacy for Young Adults
A skill based transition program
for young adults with disabilities between the ages of 16 and 22

by Celia Brown

Young adults with disabilities are particularly under served by the public school systems and by social service institutions. Though professionals in these institutions are motivated to provide pragmatic skill based learning, they are hampered by budget constraints, mandates and in some systems by the hesitancy of parents to allow the school to teach a Social/Sexual. Curriculum. Students with disabilities need what all older adolescents need: a sense of belonging, opportunities to practice independent living skills, and an abundance of time with each other to practice relationships.

Instead, in the later half of the high school year’s they become more isolated and have fewer opportunities to grow academically and socially. Practice crossing streets, ordering at restaurants, planning “get-togethers” with peers, cooking, exercising, monitoring one’s health and finances, making decisions about relationships and intimacy, and being safe at home are all challenges young adults with disabilities face. And they need more time and more opportunities than typically developing young adults to practice these Life Skills.

In the fall of 2001, the need to increase services for transition age youth was identified and prioritized by The SHARE Committee, a Central Massachusetts Region Network group composed of forty professionals who work with people with disabilities and hosted by Region II Department of Mental Retardation. A subcommittee explored existing programs, of which there were few, and decided to develop a pilot program. Hence, SAY What? was born!

The primary focus of SAY What? is the acquisition of Self Advocacy Skills and Social Skills. The thirty-week pilot program was divided into three different topic sessions: Meal Planning and Preparation, Personal Health and Safety, and Community access via public transportation. Intense planning and time was needed to develop the Personal Health and Safety Curriculum. A team of five people researched Social Sexual Curriculums modeling the Personal Health and Safety Curriculum from the F.L.A.S.H. (Family Life and Sexual Health) Curriculum developed for 7th – 12th graders in 1999 by the Seattle-King County Department of Public Health Family Planning/STD Program and the Seattle Public Schools. Two facilitators, one high school mentor, and one teacher for the Personal Health & Safety Session were hired. After the curriculum was developed, in October 2001 ten families elected to register their child in the program. They had been invited to participate by the Worcester Area Department of Mental Retardation.

Curriculum specifics:
  • During the ten week Meal Planning & Preparation Session students invited dinner guests, chose recipes, planned meals, cooked, and even cleaned-up while continuously learning how to speak up for their needs and wishes.
  • An experienced Sex Educator taught the twelve week Personal Health and Safety Session. Using the Circles and F.L.A.S.H. curriculums as guides, the co-ed group of students viewed videos about relationships and sexual harassment, studied terminology, discussed safe sex, met with a pediatrician to learn about gynecological exams and played the SAY What? Board game.
    • The board game, modeled after Trivia Pursuit, was developed to have fun while reinforcing the Social Sexual curriculum facts.
    • Videos shown to participants included: YAI National Institute for People with Disabilities – Relationship Series, No! How written by Dave Hingsberger, and You Would if You Loved Me: Making Decisions About Sex distributed by ERT Associates.
  • The final eight weeks was the grand finale! Students practiced bus etiquette and each secured a WRTA Handicap Bus Pass entitling them to reduced bus fare. They selected community sites in the Worcester Area to travel to by WRTA bus. Much fun was had at the chosen sites: a bowling alley, movie theater, restaurant, suburban park, hot pizza hang out and miniature golf park.
  • While the students met parents gathered to review the curriculums, network and explore the following topics:
  • The Institute for Community Inclusion presented post secondary school options
  • A SSI representative entertained tons of questions from families
  • Staff from the Worcester Regional Transit Authority shared travel tips and instructions on how to secure a WRTA Handicap Pass.
  • The Personal Health and Safety Curriculum and videotapes were reviewed by parents/guardians prior to the students participating in this curriculum.

The program was so enthusiastically received that parent’s offered to host and supervise five SAY What? gatherings during the 2002 summer. Students in the pilot program all signed-up to participate in the second year of SAY What?. Topics explored this current year (2002 - 2003) are: Meal Planning and Preparation, Self Advocacy, First Aid and Safety, and Civics. Those eighteen and older voted in the Massachusetts November 2002 state election, all students qualified to earn a Standard First Aid and Safety card.

What the parents say:

“….a truly life-enhancing experience for my daughter Rachel, and for others who need extra help learning how to integrate themselves into the community….. Through the SAY What? program Rachel has made friends, learned food preparation skills and been given basic information about her personal self and an awareness of what it means to become a sexual person…” Robert Kissane

“ I can’t even begin to say how this has benefited Robert. The integrations into the community and feeling so a part of the group has been the best therapy in the world for him. After so many years of hearing about peers and other people he knows meeting with their groups, and/or friends, it gives him a sense of purpose. His learning from this group will roll over into every aspect of his life….mostly his ability to handle himself in the community….” Debbie Gonzalez

“…I see changes in him, he’s becoming an independent young man. He is making a variety of food for himself by reading directions on packages instead of peanut butter and jelly sandwiches all the time…. The more he does, the more he wants to do! I knew he could do these things but I just didn’t know how to go about teaching him without overwhelming him. I feel the group support is instrumental.” Ann Ayres

What the students say:
  • “I wouldn’t miss SAY What?”
  • “I get together with my SAY What? friends on the weekends.”
  • “I love the cooking and eating.”
  • “It was fun going on the bus”
  • "Everybody wanted me back. I like the group. I feel good and laugh about New Jersey. I want this group to never end." Marc
  • "I go to make new friends. I like transportation and bowling. I like to learn how to take the bus". Paul
  • "It's crazy. It's fun. I like cooking." Tara
  • "It makes me happy to do fun stuff". Andrew

SAY What designed by:

Karen Poutre, former DMR Transition Service Coordinator, Marlon Perez, Current DMR Transition Service Coordinator, McMann, Massachusetts Rehabilitation Commission, Terry McNally, DMR Regional Family Support Director and Celia Brown, Worcester Area Arc Director

Personal Health & Safety Curriculum developed by:
Seven Hills Foundation staff Karen McDonald, Director of Quality Enhancement, and Karen Reynolds, Area Director, Karen Poutre former DMR Transition Coordinator; Celia Brown, Director of Worcester Area Arc; and Erik Rehfeld, Worcester Area Arc Self Advocate Advisor

SAY What? Administered by:
Celia Brown, Director Worcester Area Arc, Inc. an affiliate of Seven Hills Foundation

Contact information:
Celia Brown, Director
Worcester Area Arc, Inc
81 Hope Avenue
Worcester, MA 01603
508 752-6983
cbrown@sevenhills.org

Celia BrownA 1968 graduate of Russell Sage College and teacher for twenty years, Celia began professionally working with individuals with disabilities at her last teaching position at the Bancroft School in Worcester. Teaching typically developing high school students, Celia developed two recreational programs that paired these student volunteers with children with special needs – the C.A.R.E. and Horizon Theater Programs. Beginning in 1995 as the Children’s Service Coordinator for the Worcester Area Office for the Department of Mental Retardation, Ms Brown collaborated with the Worcester Public Library and Central Massachusetts Professionals to establish a Parent Information Collection at the Library. In 1998, again collaborating with others, she established the Stepping Stone Community Theater, Inc., a unique theater company which promotes access to theater for all. Currently she is the Director of the Worcester Area Arc, Inc, an affiliate of the Seven Hills Foundation overseeing three Self Advocate groups. Her primary motivators are her family: her husband, four children and two grandchildren. Celia’s middle son has taught her a great deal about Autism. He has provided her twenty- two years of invaluable opportunities to learn about the challenges individuals with disabilities have becoming educated, participating in recreational activities and becoming valued community members.

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