The Caregiver’s Cheat Sheet to:
Turning 18 with an intellectual or developmental disability
The Caregiver’s Cheat Sheet to:
Eighteen! Cue the cake, the candles, and maybe a few happy tears. It’s a big milestone, and it deserves a party.
But here’s the plot twist nobody puts on the invitation: at 18, your child is legally an adult. That means benefits, services, and decision-making rules all flip overnight. So before the balloons go up, here’s your must-do list to set them (and you) up for adult life.
1. Plan for Decision-Making
The day your child turns 18, you lose the legal right to make decisions for them.
Some doctors’ offices won’t even let you book an appointment for them — or talk to you at all — unless the right legal paperwork is in place.
There are a few legal paths.* Which one fits depends on what your child can (and can’t) handle on their own — and for guardianship or conservatorship, a judge has to agree there’s a real need.
Supported Decision-Making
They stay in charge, but you’re their advisor.
Guardianship
Usually: you make personal/medical decisions on their behalf.
Conservatorship
Usually: you handle financial matters. In some states, it covers everything.
* A quick note on terminology: States don’t agree on words. “Guardianship” often = personal/medical, “conservatorship” often = financial, and some states use one word for both. Always check your county probate or state court website for local terms.
Think guardianship or conservatorship might be needed? Start by learning how your state handles it:
[your state] guardianship for adults with disabilities
or call your county probate clerk.
From there, the process usually looks like this:
Decide on full or limited (courts usually prefer the least restrictive option that works)
File a petition (forms are on your county probate or state court site), plus a doctor’s evaluation
Expect a check-in. Many courts appoint a neutral person (often called a guardian ad litem) to meet your child and report back. It’s standard, and you may have to cover their fee (often several hundred dollars or more)
Show up at the hearing (judge will ask questions)
Get the court order & keep certified copies
Stay on top of follow-ups. Some states require annual reports
Hire a lawyer or file it yourself?
With a lawyer
They handle the forms, filing, and court process with you. Less headache, but it’ll cost you ($$$$).
File it yourself (pro se)
Cheaper, but you’ll be your own paralegal (aka lots of paperwork). Call your probate clerk first. They’ll explain your county’s exact steps.
2. Apply for SSI
SSI is a monthly cash benefit for adults with disabilities who have little/no income.
When your child turns 18, eligibility is based on their own income and assets — not yours. Apply on their behalf online at ssa.gov/ssi, or call your local SSA office.
Already on SSI? Expect an “age-18 review” under the adult rules. Keep medical and school records handy.
Can they work and still get SSI? Yes. A job doesn’t automatically end it. The check shrinks gradually as earnings go up (about $1 for every $2 earned), and Medicaid can often continue even if the check stops.
SSI Pro-tip:
Once your adult child starts getting SSI, that’s considered their income. If they live with you, they can pay you their share of the “rent” — and doing that can keep their monthly SSI check from getting cut.
(Yep, it feels strange to be your child’s “landlord.” But that’s how the system works — don’t leave money on the table.)
3. Open an ABLE Account
An ABLE account is a savings option for people with disabilities.
SSI recipients can’t have more than $2,000 in countable assets (yes, that includes their bank account). Go over that and they can lose their benefits. So after 3–4 months, you’ll need to transfer money out. (Bananas, right?)
Thankfully, money in an ABLE account doesn’t count toward that limit. Transfer the SSI payments here, and use it later for things like education, housing, food, health, assistive tech and more.
Learn how it works: abletoday.org
4. Apply for Medicaid + Waivers
Medicaid covers health care. In many states, getting approved for SSI qualifies them for Medicaid automatically
Waivers cover extras that make life livable (respite, in-home supports, job coaching, transportation, or day programs)
Apply ASAP. Waitlists can take years.
Where to go:
[your state] Medicaid application
[your state] HCBS waiver
[your state] Medicaid waiver for disabilities
Think of waivers as your child’s “adult safety net.”
You may not need them today, but future-you will thank you.
5. Connect to Vocational Rehab
A state program that helps people with disabilities prep for, find, and keep a job
Think: job coaching, training, career counseling, internships, tuition help, and even rides or assistive tech
Where to go:
[your state] vocational rehabilitation services
Or ask your child’s school transition coordinator for a referral.
Heads up: this will likely test your patience.
You’ll probably spend a lot of time on hold, and you may have to tell your story to several different people (sometimes in the same call). Put the phone on speaker, grab a snack, and plan to use the wait time to knock out something on your to-do list.
Get this going before your child’s 18th birthday.
SSI, Medicaid, and guardianship can take months to process.
Does your child have a physical disability (not intellectual or developmental)? You can probably skip the guardianship part. But SSI, Medicaid, ABLE, and vocational rehab? Still very much on your list.
Find this cheat sheet helpful and want to save it?