Housing options for autistic adults can be a fraught, confusing, and crucial topic, in both public opinion and policy arenas. We talked to Sam Crane, The Autistic Self Advocacy Network’s Director of Public Policy, about some of the myths and facts regarding the housing choices available to autistic people of varying support needs—including why group homes can be problematic, and the tragedy of shooting trauma victim Arnaldo Rios Soto’s ongoing lack of housing options.
TPGA: What are examples of housing policies The Autistic Self Advocacy Network (ASAN) is trying to change or implement, and how will they benefit our community members?
Sam Crane: Our #1 goal is to make sure that every autistic adult can find affordable housing in the community, along with the supports they need to keep their housing.
Right now, people who need independent living supports are often forced into group homes or segregated “communities.” These often force people to live according to someone else’s vision of a good life, not their own. Many people in group homes also lack basic tenant protections that others take for granted, such as the security of knowing that they won’t lose their housing without notice, or the ability to have visitors, decorate their own living space, or choose a service provider. And when the only housing options are group homes or standalone “communities,” it may even be impossible for people to find a housing provider that will accommodate their needs. Lots of autistic people are stuck in institutions because group homes think they will be too difficult to serve.
That’s why we’ve been so vocal in our support of the home and community-based services (HCBS) regulations that were passed in 2014. According to the regulations, everyone getting home and community-based services has the right to get those supports in non-disability-specific housing if that is what they want—regardless of the level of their support needs. That could include someone getting supports to live in their own house or apartment. Anyone who does live in a group home would have the same rights that nondisabled people do when they are renting a house or apartment. That includes protections against being kicked out of housing for no reason. It also includes the right to visitors, the right to privacy, the right to set one’s own schedule and the right to eat what and where one wants. A group home would only be able to interfere with those rights when there is a compelling, individualized, and documented reason—for example, a group home could help keep a person with food allergies away from food they are allergic to.
TPGA: Can you explain how self-directed housing options work (or are supposed
SC: Traditionally, if you needed housing supports, you would get them as part of a “package” from a particular agency. The support agency would be responsible for choosing the staff, setting the schedule, and deciding which supports you’d get.
Self-directed supports give that control to the person with a disability. The person with a disability gets a budget that they can use to hire their own support staff and the support schedule. Since this process can be complicated, people who use self-directed services often also have someone to help them make decisions about what to do with the budget. That helper can be a family member or a case manager.
Unfortunately, not all HCBS programs allow for self-directed supports.
TPGA: What are some concerns about group homes that our community members need to understand?
SC: There are a lot. First, we know that people who live in their own apartment or with a small number of roommates have better quality of life. They are more likely to have a job, more likely to have opportunities to make choices, and less likely to feel lonely. In larger group homes especially, we see situations in which group home staff will want to make everyone follow the same schedule and rules since it’s much easier to manage the group home that way.
We’ve also seen a number of exposés over abuse in group homes that had been promoted as “model” placements for people with disabilities. People who have more choice in their lives and who are more integrated into the community are less likely to be abused by staff or by other people living in their home. This is partly because the more a person interacts with people other than staff and roommates, the more likely it is that they will have someone to go to if they are being abused. It is also partly because when you choose your own staff, you can fire staff members who make you feel unsafe.
Finally, group homes give people a lot less flexibility in where they live—especially people who live in rural areas and people who need a lot of support. If you live in a rural area, there might simply not be enough people with disabilities to fill up a group home that is close to your family. You end up having to move far away. Group homes often also turn away people who have complicated support needs or who need more supports than they typically provide, because when you’re serving many people in one place it’s difficult to add that sort of flexibility. It’s a bit ironic because, when we say that we want everyone to be able to live in their own apartment, one of the most common responses we get is that some people have care needs that are “too high” for that to be an option. But in reality, individualized housing options can actually be better at accommodating people whose needs are too complicated to be met by a group home that’s also trying to serve many other people.
This is what we’re seeing happening to Arnaldo Rios Soto, the autistic man in Florida whose therapist was shot at by police while they were walking in a neighborhood around his group home. Mr. Rios Soto was too traumatized to go back to that group home, but he hasn’t found anywhere else in the community to go. That group home was the only one in the state that would take someone with his needs. As a result, he has been in a psychiatric hospital for over a month.
In a better world, Arnaldo’s ability to live in the community wouldn’t be dependent on whether someone has already built a group home for people with the same needs as his. He would only need to worry about finding an apartment he likes and finding supporters in his area who can serve his particular needs.
TPGA: Does ASAN have a stance on housing options like Shared Living?
SC: When done right, shared living arrangements are a great way for people with disabilities to live in the community while getting supports they need. People with disabilities can choose a roommate or host family to live with. That roommate or host family then helps provide support. In many of these arrangements, the roommate or host family can even become a person’s self-directed service provider and be paid by Medicaid for the supports they provide. Not everyone wants to live with their support providers, but many people prefer to get supports from live-in roommates, friends or family members and it’s great to have that available as an option.
TPGA: Why do people need to be wary of phrases like “intentional community”?
SC: Lately we’ve seen a lot of people use phrases like “intentional community” to describe settings that are not really integrated or community-oriented at all. These settings may serve dozens or even hundreds of people with disabilities onto a single, largely self-contained campus. The people developing and running these communities are often well-intentioned people, often with the vision of offering people a ready-made “community” that they can be part of.
But in practice, they tend to be very isolating. They’re designed so that people have no need to leave the campus on a daily basis except on group trips—people have their job, health care, and daily activities all clustered into the same campus.
They also limit people’s choices—for example, if you end up living in an “intentional community” that is connected to a farm and you decide that farming isn’t for you, you may not be able to switch jobs and still keep your housing.
Keep in mind that there are lots of “intentional communities” that are defined by interest and lifestyle but not disability—for example, four families may decide to work together on a communal farm and share cooking and child-care responsibilities. In fact, these types of arrangements are
what the term “intentional community” initially referred to.
We’re not opposed to people with disabilities choosing to live with other people who share common values or lifestyle preferences. What we are worried about is when people set up segregated, campus-style housing for people with disabilities under the guise of creating a “community.”
TPGA: Many autistic people who are able to work and/or live independently still need housing accommodations, with regards disability-related social and executive functioning needs. Do you have recommendations for resources for autistic people who want or need supported housing options, and families who want to do right by them?
SC: One really good resource is your local Center for Independent Living (CIL). The National Council on Independent Living (NCIL) has a directory online.
Centers for Independent Living were created to help support people with disabilities who want to live in the community. They can help people find accessible housing, get housing-related accommodations, and navigate their options for in-home supports. They also can offer training in independent living skills. If you’re facing discrimination or having a hard time getting supports in place, you can also reach out to your state Protection and Advocacy program.