Available adult living options forautistic peoplewill vary from state to state and on the basis of their needs. Possibilities range from complete independence to institutional living. Figuring out just what a particular individual needs, where to find it, and how to fund it, can be a complex process.
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Marianne Ehlert ofProtected Tomorrowsworks with the families of autistic people to plan for adult living. She notes that it’s important to begin thinking about adult living while your autistic child is still young.
In part, that’s because autistic children are usually eligible for disability, special education, and transition programsthrough their schools, which means that a child’s educational program can be crafted to support their plans for the future.
It’s also because the process of thinking through, planning for, and creating an ideal living situation for an autistic person may take a long time.
Envision an Ideal Setting for An Autistic Adult
All parents or guardians, Ehlert says, want their children to be “safe and happy” as adults. But every parent or guardian has a different vision of what “safe and happy” might look like.
That vision, she says, depends as much on family experiences and attitudes as on the child’s abilities and preferences. Still, it’s important for parents or guardians to start thinking about their own vision for their child’s future before making any concrete actions. While families do have a say, it is best to remember the satisfaction and desire of the autistic child matter most.
Where would the child in your care thrive? In a city? On a farm? On their own? With a group? At home with parents or guardians? In essence, says Ehlert, there are five general living options available:
Some adults with autism can live completely independently. These options depend on the individual’s functioning level.
Determine If The Ideal Setting Exists
Once parents or guardians (or adults raising teenage autistic children) have identified an ideal living situation, the next step is to determine whether such a setting already exists or whether the family will have to create the setting.
A surprising number of parents or guardians are involved with or considering involvement with the creation of a residential setting for their autistic child. Some are funding or developing supportive living situations; others are envisioning and creating work/home settings in towns, cities, and rural areas.
Information about adult living situations in your state or province may be available through school district sources. If not, look into the Department of Developmental Disabilities, Department of Public Welfare, or other appropriate agency. Do your homework to determine what’s out there.
Identify The Child’s Specific Needs and Abilities
The next step is to identify a child’s life skills to figure out what supports will be needed to make the living situation workable. Key amongindependent living skillsare:
Bear in mind, though, that very fewneurotypicalyoung adults are fully prepared for life on their own. Would you worry if a neurotypical 20-year-old were living on pizza and take-out food, or wearing the same jeans twice before washing them? If not, perhaps you shouldn’t worry too much about your autistic 20-year-old doing the same.
Ehlert explains this well:
“Parents or guardians may have higher expectations for autistic kids than for neurotypical kids because they feel responsible for the autistic child’s happiness. It’s hard to allow autistic children to fail. In some ways, it’s easier to manage failure for neurotypical kids because parents or guardians feel it’s part of the learning process - whereas they often want to protect their children with autism from failure. It’s very hard to know how far you go to protect your loved one with autism. Sometimes failures might set off behaviors, or it may be too difficult to recover from failure. Usually, parents or guardians of a teen understand what that child needs.”
Find the Right Setting for Your Child
You can start your search with your local school district or state agency. In addition, though, you’ll probably want to check in with local autism support groups and search databases to find a broad range of options.
If you do go through a public agency, says Ehlert, ask for a case worker who will offer a list of places to look at. “Parents and guardians need to go out and look and see what’s out there,” she says. Take an ‘official’ tour, narrow down your options, then turn up for a visit unexpectedly.
Ehlert recommends that you research each option, looking carefully at:
Ehlert notes that autistic children with low support needs may be brought in early in the decision making process, depending upon your particular circumstances. It is important to ensure the budding adult’s wishes are given strong consideration.
Seek Funding
Early on, says Ehlert, ask aboutfunding options. If funding is available, do you qualify? If you do have social security and Medicare, you should still qualify for any available funding. One concern, however, is any money in your child’s name. If possible, that money should be placed in aspecial needs or disability trust.
It’s true, says Ehlert, that finding that ideal housing situation can mean navigating a sea of red tape. In addition, you’ll need to be proactive about preparing for a child’s adult needs. If you don’t find what you’re looking for in the way of housing, she suggests, consider working with a group of parents or guardians to create and/or fund the right setting. If you think you’ve identified the right place, get involved with them. Become a key player. Get on their board.
Finding and funding the right home for an autistic adult is not simple, and it can’t be done overnight. But with careful planning, research, and creativity, parents and guardians are finding that it’s possible to find—or create—really supportive, positive living environments for their autistic loved ones.
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