It’s better to explore these options earlier than later, and if moving is necessary, it may go more smoothly if you start the process before a parent’s illness or death makes it necessary. “You don't move house and get a new job and get married,” — or lose a parent — “all at the same time. You try and space them out,” says Smith.
How to care for people in your life with intellectual disabilities
A practical guide to navigating a fractured support system.
Finding housing for your person depends in part on how independently they can meet their own daily needs, including their ability to buy and prepare food, clean their living space, access transportation, and maintain personal hygiene. It may also depend on whether they would rather live alone or with a roommate.
In many ways, having these choices is a sign of progress. For most of the 20th century, the US shuttered away most of its IDD population in institutions with dire conditions. In the 1970s and ’80s, the nation moved toward deinstitutionalization — that is, giving states money to house and employ people with IDD not in facilities, but in homes situated within communities of largely nondisabled neighbors.
Different states offer different housing options with various levels of state funding. Choices might include group, host, or adult family homes, where one or more residents with IDD live together with around-the-clock support, and supported living services, where people live in their own homes with supportive staff making visits as necessary. (Institutional facilities still exist to provide housing and 24/7 care to people with IDD, although they’re much less common than they were 50 years ago and their conditions are not usually ideal.)
Although a Medicaid waiver is often the golden ticket that opens the door to housing options, moving states means applying for a new waiver, a process that cannot start before establishing residency in that state, says Lauren Pearcy, executive director of the Tennessee Council on Developmental Disabilities. That’s worth keeping in mind if you’re planning a move for your person.
Maki says the best place to start the housing conversation is with your state agency for people with intellectual and developmental disabilities.
What is my person going to do during the day?
For many people with IDD, work is an incredibly meaningful part of life and a major contributor to their sense of purpose and belonging. However, 84 percent of these adults do not have a paid job in the community, and about half of those people wish they did.
When community employers are supportive of hiring adults with disabilities, people can sometimes find work alongside people without disabilities and earn comparable wages. That’s not always easy to do, however, and many people need help from a state vocational rehabilitation agency.
These agencies (there’s one in every state; find yours here) exist to connect people with disabilities with services that help them find and prepare for work — something they’re entitled to under the 1973 Rehabilitation Act. However, many states have waiting lists for these services, which are often funded by Medicaid waivers.
“We really want to get away from this notion of ‘special places for special people doing special things.’”
States may have other, non-waiver-funded programs aimed at getting people to work. Check with the adult education agency in your state (which you can find on this US Department of Education website) to see what they have on offer.
Having places in the community to explore hobbies and have fun is also key to finding purpose and belonging. For people who benefit from environments tailored to their needs, some creative Googling can help you identify recreational opportunities in your area. Your state council on developmental disabilities is also a good starting point for finding groups and organizations that offer activities and outings for adults with IDD.
While programs like the Special Olympics are a terrific recreational outlet for many people with IDD, there’s a lot of good that can come from seeking outlets that aren’t tailored specifically to people with disabilities, says Robb. “We really want to get away [from] this notion of ‘special places for special people doing special things,’” she says. If someone is interested in gardening, for example, look for a community garden club or for paid work in a nursery. Although not every club or employer is going to be receptive, she says, “Nobody wants to confine their life to the formal services and support system.”