Planning for Adulthood

Healthcare Transition

Starting to plan for healthcare transition around ages 12 to 14 gives you time to prepare. Policies on seeing patients into adulthood vary by specialty and individual provider. Some pediatric practices do set age limits, which is one reason healthcare transition planning is recommended to begin around ages 12 to 14. Families of individuals with SETD5 Syndrome may want to identify adult providers ahead of time. Depending on individual needs, this might include an adult neurologist, a geneticist or genetic counselor, and a primary care doctor willing to coordinate care.

One important step is transferring your child's medical records and creating a care summary document for new providers. This helps them understand your child's history quickly and completely. You may want to reference our Medical Emergency Summary guide for help organizing this information.

Adult care often operates differently than pediatric care. Instead of having one pediatrician coordinate everything, adults typically need to manage their own care coordination. This is sometimes called a "medical home" -- a single provider (often your primary care doctor) who knows your full medical history and helps coordinate specialist care. Talk with your child about this transition as appropriate for their understanding.

Legal Decision-Making at Age 18

In most U.S. states, at age 18 individuals reach the age of majority, and parents no longer have automatic legal authority to make medical, financial, or personal decisions. Exact rules vary by state. Options such as guardianship, supported decision-making, or healthcare proxies are established through state-specific legal processes. Planning ahead makes an enormous difference. Options depend on individual abilities and needs. Here are the main pathways.

You may also hear about conservatorship (which typically covers financial decisions) and representative payee status (for SSI benefits). Talk with a disability attorney about what combination of tools makes sense for your family.

SSI and Benefits at Age 18

If your child receives Supplemental Security Income (SSI), be aware that Social Security will conduct an "age-18 redetermination" using adult disability criteria instead of childhood criteria. This is a significant hurdle: some young adults may see benefits discontinued at the age-18 review, even when the underlying disability has not changed.

To prepare, start gathering updated medical records, school evaluations, and clear documentation of functional limitations now. Documentation from your child's doctors describing how SETD5 Syndrome affects daily functioning can be an important part of the SSI review process. Families may want to discuss this with their care team ahead of the age-18 redetermination.

Medicaid is often tied to SSI. If SSI is lost, Medicaid may be at risk too, though many states offer Medicaid waivers that let people continue coverage even without SSI. Medicaid waiver programs vary enormously by state and usually have long waiting lists -- sometimes years. Apply early, even if you don't need services immediately.

See our Qualifying for Services page for much more detail on SSI, Medicaid, and related benefits.

Financial Planning

Even if your family doesn't have substantial assets, financial planning is important. Here are three key tools to understand.

ABLE Accounts

ABLE accounts are tax-advantaged savings accounts for people with disabilities (available since 2014). ABLE accounts are designed so that savings up to certain limits generally do not affect SSI or Medicaid eligibility. The money can be used for housing, education, transportation, assistive technology, and other disability-related expenses. As of 2026, the ABLE Age Adjustment Act raised the age-of-onset requirement from 26 to 46 (see ablenrc.org for current information). Check ablenrc.org for the most current eligibility rules.

Special Needs Trusts (SNTs)

A Special Needs Trust is a legal arrangement designed to hold assets for your child while helping preserve eligibility for public benefits. There are two types: a first-party SNT (using your child's own money, like a settlement) and a third-party SNT (using family funds). A third-party SNT is an estate planning tool designed to help preserve SSI and Medicaid eligibility; consult a special needs attorney about how this works in your state.

Letter of Intent

A Letter of Intent is not a legal document, but it is a detailed planning guide you write for future caregivers -- whether that's a group home staff, a sibling, or a residential program. In it, you describe your child's daily routines, medical needs, food preferences, what helps them feel safe, important people in their life, and their personality and strengths. It can be a useful document to have, regardless of financial situation or current living arrangements.

Adult Services -- Day Programs, Employment, and Housing

Once your child is no longer in school, adult services replace special education. These services include vocational rehabilitation, supported employment, adult day programs, and residential options. Most states have a Vocational Rehabilitation (VR) agency that provides services to help people with disabilities prepare for work. Check your state's VR program for current offerings. VR can help your child explore career interests, get job training and coaching, and find community employment. Some people use supported employment, where they work in regular community jobs with ongoing coaching and support from a job coach.

Adult day programs offer structured activities, socialization, and supervision for adults who aren't working or who work part-time. Residential options range from living at home with family support, to supported living arrangements, to group homes, to more intensive residential services. What's available varies significantly by state.

Here's the most important piece of advice from experienced families: waiting lists are long. Get on them now. Adult disability services in many states have significant waiting lists. Waits of several years or longer have been reported in some states. You can always decline a spot or pause services, but you cannot get back years spent waiting. Contact your state's disability agency and your local chapter of The Arc for information on applying.

A Suggested Timeline

Here's a roadmap showing what to focus on at each stage. Every family's situation is different, but this gives you a framework.

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