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Where to Live? The Options for Autistic Adults
Moving out of the parents' home is something most children look forward to with a mixture of excitement and anxiety. For some, it symbolizes independence, freedom, and coming into one's own. But it also brings responsibility, both financial and personally. For autistic adults, the decision to move out of the family home may be particularly complicated. Perhaps the adult is ready to move out, but maybe the decision is being forced upon the individual, such as when parents are no longer able to care for their adult child on the autism spectrum.
Not all adults on the autism spectrum are capable or are ready of living completely independently. Fortunately there are options other than staying put and being completely self-sufficient. Which one is right for your situation will depending on the individual's level of independence and needs for support as well as what is affordable, given any government benefits that may be available and the family's financial resources. This article discusses some of the options for housing used by many autistic adults.
- Staying at home with parents or other relatives: From the limited research that exists, it is fair to say that well over half of autistic adults live with parents or other family members (siblings, cousins, aunts, and uncles, for example). Staying at home with family has the advantage of avoiding issues of transition related to living arrangements in the short term, but, should an unforeseen circumstance render the caregiver unable to continue in this role, the autistic adult may be uprooted unexpectedly. Family members provide daily living support, with or without the assistance of privately or publicly provided in-home assistance. Housing expenses and support programs are financed with a combination of parents' income, any income the autistic individual makes, and public benefits, such as Medicaid, Medicaid waivers, Supplemental Security Income, and/or Social Security Disability Insurance.
- Adult Foster Care: Adult foster care consists of an adult living in a family setting other than with his or her own parents or relatives. The states regulate adult foster care, just like foster care for juveniles. Adult foster parents may be compensated by state agencies or Medicaid or by the autistic individual and his or her family. If the autistic adult receives Supplemental Security Income (SSI), this can be used to pay the foster care family.
- Institutions: Institutions, sometimes called developmental centers, are large care facilities, sometimes far from home, or even in a different state. All supportive services are delivered by staff within the facility. In general, the state in which an autistic individual lives will need to approve of the placement if state funding is to be provided. (A United States Supreme Court ruling in 1999 held in Olmstead v. L.C. that confining individuals with disabilities in state institutions for no medical reason is a form of discrimination that violates the Americans with Disabilities Act of 1990 and that individuals with disabilities should receive community-based services whenever appropriate.) State funding may come through a Medicaid waiver or other Medicaid program such as Intermediate Care Facilities for Individuals with Mental Retardation (ICF/MR funding). Families may also pay privately for the placement and associated services.Prior to the 1970s, autistic individuals were routinely institutionalized, rather than being integrated into the community. While institutionalization is now a less-preferred option for many families, some nonetheless choose this option because of the stability of the placement (assuming stable funding) and the predictability of care. However, as stated by the Supreme Court in Olmstead, "confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment." Many states are closing many of the institutions which previously housed autistic individuals and those with other disabilities; thus, the stability of institutional placement is questionable.
- Group home: Group homes are community-based houses in which several unrelated people with disabilities live alongside rotating support staff, who ensure that there is help available at all times. Some are exclusive to autistic individuals; others are not disability specific. State and local regulations may cap the number of residents allowed. In general, a group home may contain three or four residents with disabilities. Group homes are owned by agencies, which also employ, train, and supervise the staff. Support staff are charged with fostering independent living skills both in-home and out in the community. Finding a group home placement can be difficult, however. Zoning regulations as well as funding limit the number of group homes available in a particular community or state. Group homes may be financed with a combination of parents' income, any income the autistic individual makes, and public benefits, such as Medicaid, Medicaid waivers, Supplemental Security Income, and/or Social Security Disability Insurance.
- Cooperative Living: "Co-ops" are similar to group homes, except the house itself is owned by a group of families or individuals who have formed a cooperative agreement. The group hires an agency or independent caregivers to support the residents within the home. The families or individuals involved in setting up the co-op may choose to form a limited liability company (LLC), an entity similar to a corporation, which provides liability protection. If you are interested in setting up a co-op, be sure to consult an attorney who can not only guide you through the legal technicalities of setting one up, but who can also help guide you in securing a location that doesn't violate zoning or other ordinances. In addition to personal finances, public benefits may be used to pay for support services.
- Supervised Living: Supervised living is similar to a group home or co-op in that the autistic individual may live with a support provider. However, the support provider in supervised living may not provide as much hands-on support; instead the support provider's role is to "supervise" and be available as needed. Depending on the number of unrelated individuals living in the home, zoning may be an issue. Funding for supervised living may come from a combination of parents' income, any income the autistic individual makes, and public benefits.
- Supported Living: Adults who wish to live in a home or apartment, but who need some level of support to do so successfully, may contract with agencies or independent service providers to check-in and help with tasks of daily living. For example, an aide can be hired to come to the house on weekday mornings to help the autistic individual get ready for the day (work or a day program, for example), to help prepare meals, and/or to assist with finances. The adult may live on his or her own or have roommates. Funding for supported living may come from a combination of personal finances and public benefits.
- Independent Living: Some autistic adults are capable of living completely independently. Of course, like all people, it is a good idea to have a support system in place: friends, coworkers, family who can be contacted in the event of illness, tragedy, or even just loneliness. Adults may own their own place or rent (an apartment, house, room in another family's home, etc.). Adults living on their own (or with a roommate) may qualify for housing assistance, such as housing choice vouchers, which is a program run by the federal government that assists very low-income families, the elderly, and the disabled to afford decent, safe, and sanitary housing in the private market. Other public benefits may also be used for support services, as allowed by the particular program.
- THe Atlantic Monthly; Who Decides Where Autistic Adults Live
- Gimme Shelter: Housing for Adults With Autism
- Housing and Residential Supports Tool Kit, from Autism Speaks®
- Autism Living and Working Website
- Housing Options for Adults with Autism Spectrum Disorder, from PA Bureau of Autism Services
- Intermediate Care Facilities for Individuals with Mental Retardation (ICF/MR)
- Olmstead: Community Integration for Everyone
- Houusing Choice Vouchers Fact Sheet
- Students in Transition; Life after Graduation