What Youth with Disabilities Say is Important For Building A Successful Adult Life?

A Forum — July 29, 2002

Policymakers gathered on Capitol Hill to listen to youth leaders Tracee L. Garner and Rebecca A. Hare from National Youth Leadership Network (NYLN) as they shared their story of youth-led research on what their peers say is needed to transition successfully into adulthood. According to Marissa Johnson, Disability Rights Advocate and Co-Chair of the NYLN, increasing numbers of youth with disabilities are realizing their dreams through the help of the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and other key legislation, but many young people continue to face barriers and lag behind youth without disabilities. NYLN is comprised of approximately 300 young leaders with disabilities, across the nation, dedicated to promoting leadership development, education, employment, independent living, and health. The group fosters the inclusion of young leaders with disabilities in all aspects of society, at all levels of national, state, and local levels, and communicates on issues important to youth with disabilities and policies and practices that affect them.

With support from researchers like Laurie Powers, Co-Director and Associate Professor, Center on Self-Determination, Oregon Health Sciences University (OHSU) and representatives of federal agencies that support NYLN, 17 members of NYLN's Youth Leadership Council developed survey questions that would lead to a greater understanding of the needs of youth with disabilities hoping to transition successfully into adult life. Survey questions were based around the following premise: To what extent do young people with disabilities have transitional experiences that research has found to be effective, and how important do they feel these experiences are for building a successful adult life? In addition to asking questions regarding 18 common experiences of youth transitioning into the adult world, Council members added two extra questions asking youth what they are learning about laws such as the ADA and IDEA, and supports for youth with disabilities. The survey was piloted with and by Council members who received training to correctly administer the survey. Council members developed a frequently asked questions (FAQ) list, administered the survey, and conducted teleconferences during administration of the survey. Council members recruited over 200 young people with disabilities to take their survey. Survey data was entered and analyzed by OHSU with oversight by the Council.

Survey participants are between 16-24 years of age, come from high schools, colleges, community organizations, and Council members' personal networks, 55% are female and 45% are male, 13% African American, 2% Asian, 71% Caucasian, 7% Hispanic, 2% Native American, and 5% other. Participants' disabilities ranged greatly from 37% mobility, 17% cognitive, 5% hearing, 5% health, 18% learning, 8% emotional, 5% visual, and 5% other. Sixty-one percent live with their families, 75% are in school, 24% use personal assistance services, 88% have a regular doctor, 83% have health insurance, 46% are employed, and 54% are unemployed.

Research Findings

The following experiences were ranked as most important to youth with disabilities, showing the highest first.

1. Learn how to set goals, be assertive, and self-promote.
2. Have family members that expect the youth to be a successful adult.
3. Have family's encouragement and assistance.
4. Learn how to stay healthy.
5. Obtain health insurance.
6. Identify accommodations needed and how to ask for them.
7. Get reliable transportation in the community.
8. Take the lead in planning education and future goals in school.
9. Learn about laws like the ADA and IDEA.
10. Get a good doctor who treats adults.
11. Get to know other people with disabilities in the same age group.
12. Work in paid jobs in the career area of their choice.
13. Learn about supports for young people with disabilities.
14. Get work experience during high school.
15. Attend classes with peers who do not have disabilities.
16. Involvement in community service.
17. Take college or vocational school classes.
18. Get services from Vocational Rehabilitation Centers for Independent Living and other community agencies.

Youth with learning and cognitive disabilities rated getting career counseling as significantly more important than other survey participants. Youth who use personal assistance rated get a personal assistant as significantly more important than those who do not use assistance.

Participants revealed that there was not much opportunity for them in the following areas:

1. Work in a paid job in a career of choice.
2. Learn about supports available to youth with disabilities.
3. Get services from Vocational Rehabilitation Centers for Independent Living and other community agencies.
4. Learn about laws like the ADA and IDEA.
5. Get work experience during high school.
6. Get career counseling.
7. Take college or vocational school courses.
8. Involvement in community service.
9. Get reliable transportation in the community.
10. Obtain health insurance.
11. Get a good doctor who treats adults.
12. Take the lead in planning my education and future goals in school.
13. Figure out what accommodations are needed and how to ask for them.

Youth with cognitive disabilities reported having significantly less opportunity to identify and obtain accommodations they need, compared with other disability groups. This group also reported significantly less opportunity to attend classes with peers who do not have disabilities. This finding reveals an obstacle that prohibits the development of social skills. Younger participants, those 16 to 18 reported less opportunities to take college courses, get services from Vocational Rehabilitation, obtain a good doctor who treats adults, and knowledge of how to stay healthy.

Implications

The NYLN research revealed a significant difference between what youth find to be important in their journey towards adulthood and the lack of opportunities in these areas. Council members agree that there is an urgent need to promote youth access to experiences listed as important, suggesting that professionals should listen more to youth needs and opinions. Council members also identified a need to promote greater understanding of laws like the ADA and IDEA among youth with disabilities, emphasizing the importance of increasing knowledge of supports, self-advocacy, and the opportunity to direct their own lives.

After presentation of research findings, presenters shared their thoughts with the audience. Rebecca Hare told forum participants, "Don't make disabilities the definitive characteristic that drives the placement of youth in employment opportunities; judge by the conduct of their character, not their disability." Panelists agreed that for youth to listen, it is more effective to hear information from their peers. It was mentioned that "One-stop centers have not been particularly friendly to youth with disabilities." A suggestion was given that for youth to become self-determined adults, they need to be supported in their attempts to take control over their own lives and to become their own advocates. To reach this goal, the Council members are advocating for Youth Information Centers "by us, for us." "Put Youth Information Centers near schools so staff can easily visit teachers for training opportunities," said Hare. An ideal transition experience, according to youth panelists, would be to start self-determination programs earlier than 11th grade. These programs could include attentive counselors to help prepare youth for college, and a road map for 9th, 10th, and 11th graders to help them develop independent living skills such as negotiating bus transportation and understanding Section 504 rules. Youth panelists advocate for youth to get educated about disability issues so they can understand and be proud that they are part of a unique culture and experience.

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