Transitioning Children With Autism and Other Disabilities Into Adulthood

By Misty Simmons, MSW, LSW

Independence. What does the word “independence” mean to children with developmental disabilities? Can parents expect them to live independently? Living and working every day, without relying on family or school for everything they need? The thought of this is overwhelming, almost frightening for many parents.

But people with developmental disabilities can lead happy, productive lives and become contributing members of society if given the chance and the proper support services. As social workers, preparing and supporting children with disabilities to successfully transition from school to adult community living and employment is one of the most important responsibilities we have.

Transition services are a balance of teaching everyday life skills together with vocational skills. The primary purpose of transition planning is to prepare students with disabilities to develop competency across three skill areas in order to proactively involve them in their communities: personal and social skills, daily living skills, and occupational and vocational skills.

Student and family involvement throughout the planning process is critical to transition success, as is starting at an early age.

While many school districts might not initiate the subject of transition planning until the child is 17 or 18, it is recommended that successful transition planning begin at age 14. For families, the phrases and terms can be confusing, overwhelming, or just foreign to them. But the sooner we start to familiarize them with what's approaching, the smoother and less anxiety-inducing the process will be. We certainly don’t expect families to remember it all after the first meeting, but regular discussions can help cement usable information for them as they approach 18 to 21 years of age.

As you approach families with this new information, the questions you should be sure to ask include: What’s the ultimate goal? Are you looking for competitive employment for your child or volunteer opportunities? Maybe they feel a day program would be a better fit? Most families won’t know the answer when their child is 14, but in the years of continued conversations that follow, you will work together to craft the best long-term plan for their child. At the same time, lead them to make decisions based on the skills their child develops and activities they enjoy. Helping them begin to think long term is essential, and working as a team towards those long-term goals must start early.

Some schools offer specialized skill-development programs for each child, based on what their skills are. That could be job sampling in a supermarket, learning cooking and meal preparation skills, or even developing a love of nature and horticulture.

Potential Models for Adult Transition

Competitive Employment is competitive, paid work performed by an individual with disabilities in an integrated setting. Initial supports are faded over time.
Supported Employment is competitive, paid work in an integrated setting, with long-term ongoing supports.
Adult Day Service is designed to provide meaningful day activity and vocational skill training, and may also include planned activities that occur in the community and promote individual independence and community inclusion.
Special Needs Adult Day Service is similar to traditional day services, but it has nursing supports and is designed to support individuals who require intensive physical, sensory, behavioral, and/or mental health supports; it also includes enriched staffing and clinical supports.
Medical Model is designed for individuals that have more complex or intense medical needs. This program is funded through Medicare.

Postsecondary Education

Vocational Training is a technical training program that can lead to competitive employment (e.g., nail technician, cosmetology, culinary arts).
Adult Enrichment Classes are noncredit classes through local education and/or recreation providers (e.g., sewing, dance, theater, computer classes).

The hardest part of working with families can often be the explanation that once a child turns 21, continued support is no longer entitled; one must become eligible for services.

Each state has different regulations and processes when obtaining assistance for adult programing. What might surprise some families is how long the process can take. One of the most important steps toward transition is working with the family to identify postgraduation agencies. For children who will need more intensive postgraduate services, including residential supports, families should begin at least three years before the age 21 cutoff. There are no guarantees for adult funding, and advocating for services becomes an important task for both the family and social worker in the years leading up to adulthood.

Knowing What You Need

Active Medicaid and Social Security Insurance (SSI).
Males are required to register for Draft (no matter the disability). If they don’t, they can be fined, sent to prison, and denied state assistance.
Is your child able to be his or her own guardian, or how much support is needed? This can be very important with medical care and treatment to ensure fully informed decisions.
Does the child have any trusts/savings accounts/inheritances? This can affect SSI eligibility.
Make sure the child has a state-issued ID card.

Empowering Families
Helping families feel empowered through this process and not using social workers as their only means for support during the transition process is crucial. Throughout the education years, social workers are shepherding the process, but teaching families how to navigate the systems themselves creates independence for families as well. Once a child and the family enter the adult system, there is no social worker to guide them. It’s a big change for families and those supported, but with the right—and early—planning, transition can be successful and smooth.

— Misty Simmons, MSW, LSW, is a senior social worker at The Bancroft School in Mt. Laurel, NJ.