Turning 18 Checklist

When a child turns 18, they become an adult from a legal perspective. For families with autistic children, this transition can represent a significant change in benefits, resources, and who provides them, and unfortunately these changes will happen regardless of whether they represent the best interests of the autistic person in question.

As we continue to advocate for a more flexible system that accounts for individual needs, we also believe it is important to discuss the ways you can prepare for that transition today.

For too many families, leaving high school can feel like falling off a cliff when it comes to resources. The purpose of this guide is to share some key components for building the bridge from high school to the next step so you can start planning.

While we believe the items on this checklist are broad enough to be relevant to many autism families, we also want to say up front that your or the autistic person in your life’s individual needs may not match up with every single thing we mention on our checklist and that is OK! 

As with all of our guides, the important things to focus on are the parts that sound most applicable to your situation.

Transition plans can be tricky for families beginning to approach the question of adulthood because it is simultaneously a great idea to start as early as possible and not the kind of thing you can simply finish years in advance. 

Transition plans can certainly cover goals and potential needs in adulthood, but it can also include steps we are able to take now, and can even help you plan on how to implement some of the other items on this checklist. 

Once you have established a transition plan, you can periodically evaluate whether your current situation matches your existing goals and whether there may be anything you need to work on in the moment to meet those goals.

When it comes to your own transition plan, you can start at any age and it can take whatever form you find most helpful. But if you or an autistic person in your life is receiving special education services in the United States, you can also find transition planning in your child’s Individualized Education Plan (IEP). 

Under the Individuals with Disabilities Education Act (IDEA), all schools must add a transition plan for students with IEPs that meet the following criteria:

• Added before student turns 16.

• Individualized to the student.

• Based on the student’s strengths, preferences, and interests.

• Includes opportunities to develop functional skills for work and community life.

If you or the autistic person in your life is not receiving special education services or has not yet received a transition plan, these criteria can be an excellent baseline for beginning to determine the personal goals we hope to achieve as adults. 

If you are interested in this particular template, you can check out our Blank IEP Transition Plan for free, which you can print as is or edit to fit your preferences!

While a lot of focus rightly goes into the financial and service scaffolding that is taken away at age 18, we should also take care not to forget how much more effort it can take to connect to one’s community without the structured gathering space of school to help. 

While the research makes clear that there needs to be more research (particularly studies that ask autistic adults directly), connecting to community in adulthood often requires individuals to independently seek out people, activities, routines, and social opportunities that might have been much more readily accessible in a school context.

For those interested in approaching this task, a great place to start is researching the area around your, or if you are already familiar with your community taking stock of what hobbies, groups, and community spaces most interest your child as well as which ones offer opportunities for participation on a recurring basis. 

The frequency of meeting is not necessarily the most important thing, but rather that the group in question offers the opportunity for continued connection.

For example, if you or an autistic person in your life is interested in recreational athletics, you may find adequate programming at your local Parks department, community centers, Special Olympics, independent meetup groups, faith-based organizations you feel comfortable participating in, and in some cases even businesses.

The emphasis on local community here is not meant to diminish the value and importance of online communities to many autistic people, and those groups should absolutely be included as part of this process. 

If you or an autistic person in your life’s interests happen to align perfect with primarily interacting online, then you may not be as reliant on local community groups as others. The most important thing is to find answers that fit with your goals as opposed to doing it in any particular “right way.”

Finally, for those cases where there isn’t much community involvement with a particular hobby or interest, you may be interested in Starting a Group in the Community!

Once a person - no matter their disability or support needs - turns 18, they become a legal adult and have full legal decision making power over their life. For some autistic adults, this arrangement is already perfect and nothing will need to change. 

Others may find it helpful to build a framework that primarily ensures their autonomy but also allows for helpful support mechanisms. 

Others still need significant support in making the kinds of decisions that require legal intervention for another adult to choose.

If you are supporting an autistic child who will not be able to make decisions completely independently once they reach adulthood, there are a variety of options available that allow for different combinations of personal autonomy and outsourced decision-making power. 

Unfortunately, the breadth of options available is not necessarily common knowledge, and teachers are not required to share their full extent. A lot of well-meaning teachers and team members at IEP meetings, for example, may only ask about guardianship and conservatorship. 

Sometimes caregivers are recommended far more restrictive options than necessary, and a little consideration now can save a lot of grief later on.

If you think you may be having some of these conversations in preparing for the transition to adulthood, we recommend researching not only guardianship and conservatorship, but less restrictive alternatives such as supported decision-making, durable power of attorney, medical power of attorney, and joint bank accounts among others. 

We get into some detail on this process in our free Guardianship and Alternatives Toolkit. 

When considering your options, it can help to start from the standpoint of using the least restrictive possible option that still meets the person in question’s needs and escalating if it becomes clear that more comprehensive support is necessary. While this does not apply to every arrangement, as a general rule the options with less flexibility and freedom are also the hardest to reverse!

The adulthood and community-based services system is a very different playing field from special education services for a variety of reasons, not least of which is that it can take an incredibly long time from when you submit your application to when you start receiving benefits. 

The Medicaid waiver process will vary from state to state, and we recommend that you check out your state’s available information on I/DD services.

While we can’t say that any particular state is guaranteed to have a great Medicaid waiver system, we can offer some categories of info you will want as part of completing your application:

• Eligibility requirements

• Waitlist waiting periods 

  • How long is your state’s waitlist?

  • How long does it take an average person before they receive services?

• Application information

• Services options

  • Examples include:

    • Respite

    • Job coaching

    • Day habilitation programs

    • Community living supports

  • While you should consult the specific rules in your state, institutions are typically not associated with the Medicaid waiver program and have more to do with ways states are required to comply with Medicaid law. Many I/DD individuals who are waiting on Medicaid waiver benefits have little choice but to stay in an institution while they wait.

• Provider options

  • What are the major organizations in your community?

If you think your child may benefit from adult and community-based services we strongly recommend you apply for services as early as possible. The waitlist is no joke, and in some states can last up to 10 years! The sooner you get on the list, the better. 

If you or the autistic person in your life become eligible before age 18, not to worry! Unlike some other benefits, you can benefit from the Medicaid waiver before you are legally an adult.

If you are interested in learning more about the Medicaid waiver program, as well as some other potential public benefits that may apply to your situation, we touch on that subject in our Financial Planning for Families Toolkit.

If you’re interested in hearing more about preparing for the transition to adulthood or have your own suggestions for an adulthood checklist we would love to hear from you! Just drop us a line at hello@autismgrownup.com, and best of luck in building a future that you or an autistic person in your life wants, needs, and deserves.