Where Can My Autistic Child Live When We Can't Do It Anymore?

Most families do not go looking for this. They arrive at it — after a bad year, or a hospital stay, or a birthday that made the arithmetic impossible to ignore. Often what finally forces the question is not the person at all. It is a parent's own knee, or heart, or the quiet realization that the plan was always "we will manage" and managing has stopped working.

If that is where you are, you are not doing something shameful by reading this page. Wanting your child to have somewhere good to live after you cannot do it any more is the most ordinary parental instinct there is. The hard part is that nobody hands you a map. So here is one.

First: the answer depends on APD, not on us

In Florida, adult housing and support for people with developmental disabilities runs through the Agency for Persons with Disabilities. Being found eligible by APD is what opens the door, and enrollment on the iBudget Medicaid Waiver is what pays for the support. A group home cannot decide either one, and any home that tells you otherwise is telling you something useful about itself.

Eligibility rests on one of eight conditions named in Section 393.063(11), Florida Statutes — intellectual disability, cerebral palsy, autism, spina bifida, Down syndrome, Phelan-McDermid syndrome, Prader-Willi syndrome, or Tatton-Brown-Rahman syndrome — that manifested before age 18 and constitutes a substantial handicap expected to continue indefinitely. For autism specifically, Florida has its own definition and its own list of twelve features, and the DSM level is not what the rule asks about.

The three places an adult can actually live

Strip away the vocabulary and there are three real options for an adult on the waiver, and they differ by one thing: how much of the day somebody else is there.

• A licensed group home. A house — a real house, in a neighborhood — where a small number of adults live with staff on site. The home holds the APD license and provides residential habilitation. This is the option for somebody who needs a person there, and it is what we run.
• Supported living. The person's own apartment or house, with a supported living coach visiting for an agreed number of hours a week. More independence, less presence. It suits somebody who can manage stretches of time alone safely.
• A licensed foster care home. A family home where the licensee lives, supporting a small number of people. Smaller and more domestic than a group home, and usually harder to find an opening in.

What is NOT on that list matters just as much. An assisted living facility is licensed by a different agency and aimed largely at older adults; a nursing home is a medical setting. Neither is the same thing as an APD group home, and families are sometimes steered toward them by people who do not know the difference.

What has to happen first, in order

1. 1Apply to APD, if you have not. This is the step that gates everything else, and it is slower than families expect. APD's own Get Started page is where the application begins.
2. 2Get a determination. APD applies Rules 65G-4.014 through 65G-4.017, F.A.C. — its own definitions, its criteria, and who is qualified to make the diagnosis. Being found eligible is a separate decision from being enrolled for waiver services.
3. 3Understand where you sit on preenrollment. Eligibility does not automatically bring funding. Florida places people in preenrollment categories, and which category applies is the thing that decides how long the wait is.
4. 4Get a Waiver Support Coordinator. This is the person who arranges placement, and you can choose and change who it is. This is worth doing well rather than accepting the first name offered.
5. 5Start visiting homes. You do not have to wait for any of the above to be finished before you look. Call homes, ask about openings, and go and see the ones that sound right.

Start looking before you need to

This is the only piece of advice in this article that we would push on somebody. Families who start looking while there is no deadline get to visit several homes, more than once, unhurried, with their loved one — and they get to choose. Families who start during a crisis get what is available that week.

Nothing about a visit commits you to anything. There is no list you go on by asking, no obligation, and nobody thinks less of a parent for looking early. The homes that are worth considering will be glad you came while you still had time to think.

What to actually look at when you walk in

• Do the staff know the residents without checking a chart? You can tell in about five minutes.
• Does anyone have their own bedroom, and is it actually theirs — posters, mess, a closed door?
• What happens on an ordinary Tuesday? Not the activity calendar on the wall. What did people actually do last Tuesday?
• Who is awake at night, and what happens if somebody needs help at 3am?
• How does the home tell a family when something goes wrong? Ask for a recent example rather than a policy.
• Ask about the support level the home is licensed for. A home licensed at the standard level cannot take a plan calling for behavior focus or intensive behavior services, and a home that dodges this question is one to be careful with.

And the part nobody says to you

A good move is not a loss. The families we speak to a year afterward almost always say a version of the same thing: that they got to go back to being a parent instead of being staff. The visits got better because they were visits. The relationship stopped being about medication schedules and transfers and sleep.

That is not a promise about anyone's particular situation, and moving is genuinely hard — nobody should pretend otherwise. But the fear that carrying this yourself forever is the only loving option is worth putting down. It is not true, and holding it usually costs the person you are trying to protect.