Finding the right home for your adult child with autism
Lisa Jo Rudy
Marianne Ehlert of Protected Tomorrows works with the families of people on the autism spectrum to plan for adult living. Available options for people on the autism spectrum vary from state to state and individual to individual. 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.
Ehlert notes that it's important to begin thinking about adult living while your child with autism is still young. In part, that's because children with autism are usually eligible for special needs and transition programs through their schools, which means that your child's educational program can be crafted to support your plans for the future. It's also because the process of thinking through, planning for and creating an ideal living situation for a person on the autism spectrum may take a long time.
Step One - Envision an Ideal Setting for Your Adult Child With Autism
All parents, Ehlert says, want their children to be "safe and happy" as adults. But every parent has a different vision of what "safe and happy" might look like. That vision, she says, depends as much on the parent's experience and attitudes as on the child's abilities and preferences. Still, it's important for parents to start thinking about their own vision for their child's future before making any concrete actions.
Where would your child thrive? In a city? On a farm? On his own? With a group? At home with parents? In essence, says Ehlert, there are five general living options available:
* At home with family
* Apartment with services that come in and check on residents (make sure they are paying bills, cleaning, etc.) These are living support services, and they could be privately or publically funded.
* Housing unit program/roommate -- individuals live in a house or apartment building that belongs to a structured support group; caregiver makes sure everyone is OK at night, runs programs, etc.
* Group home (community integrated living arrangement) -- caregiver lives on site
* "Dorm-style," large facilities (institutional settings, very low level workshop living)
Step Two - Determine if Your Ideal Setting Exists
Once parents (or parents and their teenage children with autism) have identified an ideal living situation, the next step is to determine whether such as setting already exists or whether the family will have to create the setting. A surprising number of parents are involved with or considering involvement with the creation of a residential setting for their child with autism. Some are funding or developing supportive living situations; others are envisioning and creating work/home settings in towns, cities, and rural areas.
Often, information about adult living situations in your state or province is available through school district sources. If not, you may need to look into the Department of Developmental Disabilities, Department of Public Welfare, or other appropriate agency. Do your homework to determine what's out there.
Step Three - Identify Your Child's Specific Needs and Abilities
The next step is to identify your child's life skills to figure out what supports will be needed to make the living situation workable. Key among the skills young adults will need to live independently are the ability to manage finances, shop, cook, clean and manage personal hygiene. Bear in mind, though, that very few typical young adults are fully prepared for life on their own. Would you worry if your typical 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 20-year-old with autism doing the same.
Ehlert explains this well:
"Parents may have higher expectations for autistic kids than for typical 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 typical kids because parents feel it's part of the learning process - whereas parents often want to protect their children with autism from failure. It's very hard to know how far you go to protect your adult child with autism. Sometimes failures might set off behaviors, or it may be too difficult to recover from failure. Usually, parents of a teen understand what that child needs."
Step Four - Find the Right Setting for Your Child
Depending on where you're living, there are various agencies that manage residential settings for adults with disabilities. In addition to state-run agencies, you may also want to search for independent residential centers by state, region, or county. You might want to 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 such as AutismLink 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 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:
* Staff turnover
* Any reports of abuse
* The quality of individual caregivers (as opposed to visual attractiveness)
* Availability of round the clock and "duly diagnosed" support
* Length of wait list
Once you have a couple of options that you like, it's time to involve your child with autism in the decision making process. Ehlert notes that higher functioning children may be brought in earlier, depending upon your particular circumstances.
Step Five - Seek Funding
Early on, says Ehlert, ask about funding 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 a special needs 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 your 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 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 your adult child with autism is not simple, and it can't be done overnight. But with careful planning, research, and creativity, parents are finding that it's possible to find -- or create -- really supportive, positive living environments for their children with autism.
Courtesy Lisa Jo Rudy's About.com blog. About.com is a part of the New York Times Company.