Last week, we discussed National Disability Employment Awareness Month and provided Five Tips for Success for your teen or young adult who had brain surgery for epilepsy.
This week, let’s consider what happens when your young person ‘ages out’ of the school system and transitions into college, a training program, or employment.
Your student will leave their comprehensive, multidisciplinary school and medical systems and enter the adult world – which has many distinct agencies that need to be coordinated by the individual or their family.
If your child is on an IEP, while your student is still in high school it’s important to include the representatives from adult service agencies in all IEP planning meetings. Schools should help students and families find these providers and programs and complete applications so that services are in place as early as possible (some services may even be able to start before the student graduates). Many agencies that offer adult services have eligibility criteria and waiting lists. All members of the IEP team should be familiar with postsecondary resources and other agencies that could support the student.
Unfortunately, transition services are often poorly understood by school teams and frequently not well-coordinated. Do not assume the school district will meet its obligations and take the lead. Parents, caregivers, advocates, and the student must be proactive and stay closely involved throughout the transition process.
At transition age, it’s essential to learn about and start connecting with adult service agencies. These agencies provide supports across all life domains.
Here are some adult service agencies to connect with as early as possible:
- Your State Department of Developmental Services (or in California, your Regional Center), establish eligibility before age 18;
- Your State Department of Health and Human Services;
- Social Security Administration;
- The ABLE National Resource Center;
- Your State Vocational Rehabilitation Agencies;
- Vocational readiness service agencies (such as Employment Services at TheArc.org, or local agencies);
- Adult day programs (check with your school district, The Arc, or other agencies for lists of programs);
- U.S. Department of Housing and Urban Development (HUD);
- Supported living facilities such as community homes or intermediate care facilities for individuals with intellectual disabilities;
- Community supports coordinators and service coordinators;
- Medical providers;
- Durable medical equipment providers;
- Therapists and mental health providers;
- Community aides and personal assistants;
- Protection and Advocacy Agencies, Parent Training and Information Agencies, and other advocacy organizations that can provide accurate information about Disability Rights Legislation, Acts, Policy and State regulations;
- Disability-specific agencies (The Brain Recovery Project, Easter Seals, The Arc, Deaf-Blind Services, etc.);
- Community-Based Independent Living Skills Providers (integrated community services, independent living centers)
- Career and vocational school representatives;
- Internship and job providers;
- Transportation providers (to access job and community);
- Post-high school programs;
- School district transition programs;
- Postsecondary transitional living programs (such as CIP, CLE, or Mansfield Hall);
- Community colleges;
- Colleges (see thinkcollege.net)
- Respite agencies to provide caregiver respite;
- Any other agency relevant to your child’s needs in adulthood.
USAGov is the Official Guide to Government Information and Services.
You can find links to various state agencies in different categories, as well as resources for federal programs.
About the author
Audrey Vernick is the Director of Patient and Family Advocacy for The Brain Recovery Project. She is the parent of a child who had hemispherectomy for seizures caused by stroke. Ms. Vernick holds a level 2 certification in Special Education Advocacy Training from the Council of Parent Attorneys and Advocates and is certified by The ARC in future planning. She represents The Brain Recovery Project in the Rare Epilepsy Network‘s Adult Transition Taskforce and serves on the Youth Advisory Council for HOBSCOTCH (HOme Based Self-management and COgnitive Training CHanges lives), a behavioral program designed to address memory and attention problems for people who have epilepsy.