Joanna with her son, Alex

Joanna with her son, Alex

Turning 18 is fraught with all sorts of challenges and issues, even for families of “typical” young adults. If you have a young adult with special needs, chronic illness, or disability, the transition to adulthood is often MUCH more complicated. Our kids need to know that we’ll always have their backs, but while we’re back there, we’ll be nudging them forward towards their adult lives.

Self-advocacy is one of the hardest transitions for both parents and young people. As parents, we have been our child’s voice, their strongest advocate and their steadfast supporter throughout sometimes seemingly insurmountable challenges. To allow and encourage them to advocate for themselves, to whatever degree they are capable, is one of the best things we can do for them.

The transition from pediatric medicine to adult medicine is a difficult one. It may feel like a cliff when one day you just don’t see the pediatrician anymore. If you are lucky, there is a more gradual, thoughtful transition. Sometimes systems even allow a young adult to stay with a pediatric specialist because of their specific medical issue or provide continuity of care.

My son, who has autism and Type 1 diabetes, has been allowed to continue to see his pediatric endocrinologist even though he is now 24 years old. Some systems are more flexible than others, but my advice is that it’s important to ask about the possibilities.

joannajaegerThen there are a host of legal issues. If your child needs medical attention he or she no longer has to call you. As a parent who has been intricately involved in all aspects of your child’s life up to that point, this can be a horrifying concept. Worse yet, your child actually needs to give specific permission for you to discuss any of their medical treatments or procedures. Often times this requires multiple reminders to health care providers and adjustments to your formal documentation so that you can be in the loop when an issue arises.

Another challenge is moving out of the public school system into college or work or some combination of the two as an important step towards independence.   As parents, none of us want our kids to be “stuck at home”. Although there are systems and supports available, the challenge is to uncover which of those your child might need or be eligible for. Learning what questions to ask, who to ask, and learning to be patient if you have to ask many times (and especially what to do if the answer to your question is “No”) are part of the skill set both you and your child will need to develop during this time of transition and great change.

As difficult as all this sounds, at the same time this transition period is the time when your young adult will have the opportunity to develop their self-advocacy skills and learn to ask for what they need and persist when they face obstacles—all very important skills to develop as they enter adulthood.

Below is a list of some of the resources that provide support and “scaffolding” for your child as he or she transitions to adulthood:

Guide for Building Self-Advocacy Skills can be found here.

Social Security: Social Security can provide basic support and access to Medicare for people who are over the age of 18 who are unable to work either permanently or temporarily. Eligibility is determined or re-evaluated when a child turns 18. The Social Security guide to helping young people with disabilities transition to adulthood can be found here.

Vocational Rehab/Work Supports: There are state-level programs that can help with job training, coaching, and on-the-job support for people with a wide range of disabilities. In California, the Department of Rehabilitation is this agency.

Campus Disabled Student Offices: If your young adult child is on a college campus, this office can help him or her to better understand what accommodations might be made to help him or her be successful in school as well as to connect with other young people who face similar challenges.

In-Home Support Services (IHSS): These agencies, usually organized through Departments of Health or Social Services, can provide support in a variety of ways. They may provide help with chores, cooking, shopping, transportation for someone with mobility or movement issues, personal care in dressing or hygiene, or protective services for someone who doesn’t have the ability or judgment to be able to be left alone. When your child is under the age of 18, the parent is expected to provide most of this assistance, but after the age of 18, your child becomes eligible for these support services.

Joanna Jaeger
Joanna Jaeger is the mother of two young adults, one with autism, both with Type 1 diabetes. All along her journey, Joanna has found ways to connect with other families both seeking and providing support. She has been a long-time volunteer with Parents Helping Parents in Santa Clara, CA (www.php.org) providing help to families of children with a wide range of special needs as a mentor parent, advocate, fundraiser and Board member. She is passionate about food, travel, and baseball.

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