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Housing Options for Adults with ASD

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by Jim Ball, EdD, BCBA-D
Autism Asperger’s Digest
| July/August 2012

Most individuals with autism spectrum disorder (ASD) live at home with a family member. They do not have the same opportunities their neurotypical counterparts have in accessing appropriate living situations. Services are not always available, due to intensive needs and lack of funding, or if they are, they are not appropriate or staffed with people who understand autism (Organization for Autism Research 2006).

It is estimated that approximately 500,000 individuals with ASD will reach adulthood in the next 15 years (McBreen). This will put even more pressure on the already overburdened system. Therefore, it is critical that families know what their options are and begin the process of securing appropriate housing for their loved one as early as possible.

Which Housing Is Best?
But, how does a family really know what type of living situation is going to be the best for their loved one with ASD? A great deal of the time this is dictated to them by what the local adult agencies have to offer. However, let’s say that we are looking at the ideal situation: what does one take into consideration? How do you assess how much support the young adult needs to complete activities of daily living?
The best inventory I have used is the Functional Skills Screening Inventory (FSSI) by Becker and colleagues (1986). The FSSI is not a norm-referenced test delivered in a stark setting. It is more of an environmental assessment that allows for a natural way to assess the individual since it takes place in his school, employment, or home setting. It does not produce scores, but rather provides information on observable behavior. It compares the individual to himself over time, eliminating one of the things many people criticize about standardized tests for individuals with ASD—not giving a true measure. I think the inventory’s greatest value is its potential to enhance the quality of life of the individual by improving services through observable behavior change and by focusing on the functional living skills needed to be an integral part of the community.
The FSSI does not highlight the deficit areas of the individual, but rather focuses on the individual’s abilities. It looks at the strengths of the individual and helps the individual use them to remediate his areas of challenge. This process can assist in selecting the appropriate living arrangement based on overall skills areas. And based on monitored progress, the individual may move on to an alternative setting.
Once you have determined the overall skill level of the individual and to what degree he can function on his own (with or without support), it’s now time to examine types of living arrangements.

Family-Style Options

  • Living at Home. The individual remains in the family home under this arrangement. The house may be modified to enhance the individual’s ability to be more independent and allow greater access. The ownership of the home may also change over time to the individual, who with appropriate supports can remain living in the house after parents or guardians are gone.
  • Adult Foster Home. The individual and maybe a support person live with a family specially trained to provide the necessary supports for the adult(s). They assist the adult with skills of daily living and support him in the daily routine. This would be managed by an agency or private provider, which would certify the home and oversee its operation.

Non-Family Options

  • Independent Living. This least restrictive option can be a home or apartment owned or rented by the family, the adult with ASD, or an agency. The individual with ASD has the ability to make critical decisions (e.g., when to call 911) and could include a roommate. Direct supervision is not required, but it is recommended that periodic monitoring be used to ensure a sanitary, safe environment. Ongoing training is also encouraged to build independence and focus on self-care skills.
  • Supported Living. This more restrictive option is similar to independent living but would require more direct supervision of the individual. This supervision could be done by pairing the individual with ASD with another individual with a disability that is more able or with a neurotypical person. The amount of supervision will vary dependent upon the needs of the individual. Support services will take place in the home, not in a separate facility.
  • Supervised Apartment. This option is great for those individuals with ASD who enjoy social interactions and want to be with neurotypical individuals. It usually requires an agency or private provider whose level of assistance is based on the individual’s skill level, but staff will need to be available for emergency situations.
  • Group Home. There are usually anywhere between three to six individuals who live together in this setting, the most restrictive option. This home is operated by an agency or private provider and is staffed 365 days a year, 24 hours a day. Staff needs to be well trained to assist the residents in all aspects of daily life. There is usually an employment option that coincides with this type of living arrangement; if not, daily activities outside the home are arranged.

The need is urgent: if we do not, in the near future, provide appropriate living opportunities to those living with ASD, the impact on families will be devastating. The Autism Society of America (www.autism-society.org), along with many other organizations, has begun the process of engaging the federal government in this critical discussion. Through its strategic plan, the Autism Society has emphasized housing as an immediate need and will be focusing its efforts on this topic over the next five years and beyond. However, without the help of other disability groups, I fear this effort will not satisfy the needs. Therefore, it is critical that parents get involved whenever and wherever they can to assist in this effort. Together we can make a difference.

References
Becker, H., S. Schur, and E. Hammer. 1986. The Functional Skills Screening Inventory User’s Guide. Austin, TX: Functional Resources.

McBreen, E. “Study Projects Housing Needs of Autistic Adults.” http://www.autismsupportnetwork.com/news/study-projects-housing-needs-autistic-adults-9098342

Organization for Autism Research (OAR), the Southwest Autism Research & Resource Center (SARCC), and Danya International, Inc. 2006. Life Journey Through Autism: A Guide to Transition to Adulthood. Arlington, VA: Organization for Autism Research. http://www.researchautism.org/resources/reading/documents/TransitionGuide.pdf

 

Copyright © Autism Asperger’s Digest. 2012. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.


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