Gimme Shelter: Housing for Adults with Autism
We worry a lot. As parents of teens and adults with autism, we worry about all the ways the world can harm our children. Our daily refrain is, “What happens to him when I’m gone?” And central to this concern is the question of where our children will live if not with us.
There was a time when children and adults whose needs were consistent with autism (whether they received such a diagnosis or not) were routinely institutionalized. This trend peaked in the mid-1950s. A decade later, however, the movement to deinstitutionalize—through discharging numerous residents as well as closing facilities—was underway. This movement included individuals with a variety of challenges—developmental disabilities, intellectual disabilities, and mental illness. To fill the void in housing and caregiving, it became necessary to develop and expand community service models.
Today a wide variety of housing models exists to serve adults on the autism spectrum. To underscore the desirability of providing community options, the Supreme Court ruled in its 1999 decision in the case of Olmstead v L.C. that services for people with disabilities must be provided in the “most integrated setting possible.” Determining what is possible, however, can be difficult. As with most services for adults with autism, it becomes incumbent on the individual and family to thoroughly examine options and determine which model is the best fit.
Overview of Models
The models outlined below reflect two components: 1) type of residence; 2) relationship to service provision. Typically, the more intensive the living support, the more likely the residence and support services will be inextricably linked. Thus, the ability to change service providers does not exist in certain residential models. These models are generalizations; all manner of permutations can occur. It is important to note that when state and/or federal monies are involved in housing support, individuals must be found eligible for the model.
- Institutional setting: The process of deinstitutionalization nationwide means that fewer and fewer adults with autism receive such placements and thus must be absorbed into community living arrangements. In addition, because states are closing many, if not all, of their facilities, adults currently living in institutional settings must be transitioned back into the community. Adults with autism who also have co-morbid mental illness may still receive treatment in psychiatric hospitals if deemed necessary.
- Living with parents or other family members: There are currently no solid figures on the percentage of adults with autism who reside with their parents or other family members nationwide. Studies typically involve small sample sizes, may not be limited to adults with autism alone, and results seen in one state will vary from those in another. However, existing data seem to indicate that well over 50% of adults with autism continue to live with parents or other family members. Support in this setting can come strictly from family, or can be augmented with in-home services. (Which may be privately funded, or may stem from state or federal programs.) Choice in provision of support services will depend on how those services are funded.
- Adult foster care: Like foster care for children and youth, adult foster care consists of an individual living in a family setting other than with their own parents or relatives. Adult foster care providers are reimbursed for their services through state agencies and/or Medicaid, and an individual’s Supplemental Security Income (SSI) payments may also be used to support this service. The number of adults receiving care in the foster home will vary based on state regulations, as will the types of disabilities any one home may serve.
- Group home: The primary difference between adult foster care and a group home is that while foster care is provided by a family, a group home is typically run by an agency. Caregivers in these settings are employees of the service provider, and choice of service provider in the group home is not usually an option. Some group homes specifically focus on adults with autism; many serve a variety of people with developmental and intellectual disabilities. Many states are now capping the number of residents a group home may serve, with three to four housemates a typical number.
- Supervised community: In this model, adults with autism receive support at a less intensive level than in a family or group home setting, and services are provided by the agency that runs the community. The specifics can vary from a number of supervised apartments or homes in urban or suburban communities to a model such as a farmstead.
- Supported living: While a supervised community typically means that a specific service provider oversees residents’ care, supported living in an apartment or home allows the individual with autism to choose agencies, and to change service providers but to remain in the same residence if so desired. There are a number of permutations possible here—an adult with autism may live alone with in-home supports or may have one or more roommates. If the roommates also need supports, other service providers may be involved.
- Independent living in leased or owned home: Adults with autism who are able to live on their own in the community may qualify for housing assistance. Some adults with ASD may desire to purchase their own home or may have homes purchased for them by family members, while others will choose rental options.
Thinking about optimal housing for an adult with autism must involve thinking about feasibility. What is feasible in terms of independent functioning? And. what is feasible in terms of affordability? Answering these questions will narrow choices. Keep in mind that feasibility is impacted by availability of support services. For example, an adult with ASD may wish to live in her own apartment in the community in which she grew up, with her parents nearby. How much independent living support is necessary to make this feasible? What would it take in terms of fiscal resources to make this arrangement possible?
One of the most difficult aspects of making housing decisions is to accurately assess an individual’s functioning level in terms of independent living skills. It is frequently the case that adults with autism demonstrate a much higher level of competence in independent living skills in non-family residential placements, as the habits they learned as children in that environment are no longer engaged in. Parents often unconsciously contribute to learned helplessness as well, because it can be easier to simply do things for the adult with ASD than to take the time to teach and develop new skills. Help in assessing independent living skills may be found through state vocational rehabilitation agencies, state developmental disability agencies, or private therapists and/or consultants. (Remember to check your private health insurance for reimbursement options for services from psychologists, social workers, occupational therapists, etc.)
Once a decision is made regarding the best fit for residential model, the next step is to determine what the actual availability of this model is, both in terms of access to admission and in terms of funding. In other words, suppose a group home in the community seems the right fit for your adult child’s level of independent functioning and personal and family preferences. Your state developmental disability agency can then help direct you to providers in your community who offer this residential model. You will then need to determine which of those providers actually has openings. Many people will find that the wait for an opening can be several years long. The same will often be true of supported communities.
Should your family determine that continuing to live at home is the right choice for the adult with autism—or if that is the only choice available for a period of time—it is important to then learn about options for in-home services available to your through state and federal programs. Supports can take on a variety of forms, from respite care to transportation to teaching independent living skills in the home. Caregiver burn-out is high among families of adults with autism, especially as the parents themselves age. In addition, generalization of skills will increase if taught by a variety of instructors.
As always, it is important to think in terms of lifespan of the adult on the autism spectrum. Most people with autism will outlive their parents. And most parents of adults with autism will, sooner or later, become too frail to be appropriate caregivers and may well need care themselves. In addition, adults with autism—like all of us—change over time. New skills may be acquired that indicate a step down in support. Alternatively, physical or mental health issues may change, resulting in the need for a higher level of care. Housing options should be evaluated as the person with autism approaches adulthood and through the years.
Katie Schaufelberger contributed research to this article.