The Trendline | Planning for Adulthood

Hi, friends!

This week we're covering how to plan for your child's transition to adulthood, including important Medicaid waiver programs and resources for supported decision-making.

Thanks for being here. We're so glad you're part of the Trendline community.

— The Trendline Team

There’s a lot to think about as an autistic child becomes a teenager. Graduation, employment, healthcare, transportation, finances, housing, benefits—and one particularly big question:

What happens when my child turns 18?

The answer looks different for every family.

Planning for adulthood isn't about having everything figured out today. It's about starting early enough that you have time to understand the choices available to your family—and helping your teen build as much independence as possible along the way.

When a child reaches the age of majority, parents may no longer automatically have the legal authority to make certain decisions on their behalf.

That sometimes leads families to assume that guardianship is the natural next step, but it isn’t the only option!

Depending on your child's abilities and your state's laws, alternatives may include supported decision-making, powers of attorney, healthcare proxies, representative payees, or other arrangements that provide help in specific areas without transferring all decision-making authority.

Supported decision-making, for example, allows an individual to retain the right to make their own decisions while receiving assistance from trusted people they choose. The federal Administration for Community Living describes it as a person-centered alternative to guardianship that can be tailored to the types of decisions where someone needs help. 

The goal is to ask:

What is the least restrictive level of support that allows my child to be safe, successful, and as independent as possible?

Because guardianship and supported decision-making laws differ by state, families considering these arrangements should seek state-specific legal guidance.

School-based services don't last forever, which makes it important to understand what systems may support your child after graduation.

One important place to start is Medicaid.

Medicaid can support eligible autistic people across the lifespan through several different coverage pathways. Depending on the state, Medicaid programs and Home and Community-Based Services (HCBS) waivers may help provide behavioral supports, respite, employment supports, community-based services, residential supports, personal care and other services.

But Medicaid programs vary substantially from state to state, and some states have waiting or interest lists that can be several months or even several years long. The good news is that you don’t need to wait until your child is 18 to check eligibility and (in some states) even be given a place in line.

Ask your state's Medicaid and developmental-disability agencies what waivers exist, when your child can apply, how eligibility is determined, and whether there is an interest or waiting list.

Over the next few years, families can begin exploring several areas together: decision-making and legal authority, Medicaid and HCBS waivers, Social Security benefits, employment or postsecondary education, transportation, housing, healthcare transition, financial planning and special-needs trusts, and independent-living skills.

You don't need to solve every issue at once. Pick one area, learn about it, and move to the next.

Adult transition planning isn't something families have to tackle entirely outside of school.

Under IDEA, beginning no later than the first IEP that will be in effect when a student turns 16—or younger when the IEP team determines it is appropriate—the IEP must include measurable postsecondary goals based on age-appropriate transition assessments.

Those goals relate to training, education, employment and, when appropriate, independent-living skills. The IEP must also identify transition services needed to help the student reach those goals. 

IDEA also addresses the transfer of rights when a student reaches the state's age of majority. No later than one year beforehand, the IEP must include a statement that the student has been informed about IDEA rights that will transfer, if applicable. 

Here’s some ideas for your next IEP meeting:

Create an “Adult Services” folder before you need it.

Keep Medicaid and waiver information, Social Security information, evaluations, IEP transition documents, legal planning notes, agency contacts and application dates together.

Future You will be very glad you did!

Have a topic you'd like us to cover?
The Trendline is here to make complicated systems a little easier to navigate. Send us the questions you're running into—from insurance and Medicaid to IEPs, ABA and planning for adulthood—and we'll continue breaking down the information families need.

Educational information only. Laws, Medicaid programs, waiver eligibility, insurance requirements and available services vary by state and individual circumstances. This newsletter is not legal or medical advice.