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Housing Proves Challenging For Adults On The Spectrum

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Families are facing limited housing options as an increasing number of individuals with autism enter adulthood, a new survey suggests.

The vast majority of adults and transition-age individuals with autism are currently living at home and less than one-quarter said they are on waiting lists for housing services so that they could live more independently.

The findings “underscore the overwhelming need for more housing and residential support options and services,” said Lisa Goring, vice president of family services at Autism Speaks, which conducted the online survey of more than 8,600 caregivers and nearly 400 individuals with autism across the country.

The results are being released Wednesday at the advocacy group’s policy summit in Washington, D.C.

Over 70 percent of people with autism said they would like to live in a single-family home, with a suburban setting being the most preferred option. The majority said it was important to live near family, but survey respondents were split about whether or not living with a roommate would be good.

Practically speaking, however, financial concerns loomed large as a potential barrier to achieving housing goals. Only about 30 percent of caregivers said they expect to be able to help finance a home for their loved one with autism. And, just a quarter of those surveyed said they are currently saving money to account for future housing needs.

Meanwhile, caregivers also expressed concerns about individuals with autism being treated with care and respect when living on their own.

“Certainly one of the take-aways for us is there needs to be more education for families in terms of what options may be available,” said Goring who pointed to housing and rental assistance vouchers as well as home and community-based services waivers as some options that are currently available.

Nonetheless, Goring acknowledged that those programs have limits and said Autism Speaks plans to advocate for expanded offerings for adults on the spectrum.

“It’s not one size fits all,” she said. “People with autism should have the same types of choices as everyone else.”

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Comments (8 Responses)

  1. Jeanne M says:

    Sad to read this but not very surprised especially in our economy, personally speaking I’d love to see housing facilities with a ‘mixture’ (those with autism in apartments who live by themselves, and others with roommates, etc.), in order to accommodate those who need it the most. Hopefully this will happen, SOON.

  2. Whitney says:

    Yeah since most of Section 8 are in unsafe neighborhoods. The affordable housing does not tend to be supplemented by Housing where people do not want poor people in the areas. Housing shortages is part of the problem and safe neighborhoods and law enforcement is another problem. Most people can get guns and there drug violence so this study is no surprise.

  3. Sue says:

    Not sure this is any more significant an issue than it is for the disability community in general. If we must label, this is not different than for those with mental illness, down syndrome, traumatic brain injury, etc. etc.

  4. Thomas C. Wood says:

    I myself as an older 55 year-old adult with Autism and Cerebral Palsy is facing these issues.

    I am living with my younger non-disabled brother in the family home he inherited from our late Father.

    Here in New Hampshire, the property taxes and utilities are so darn high, that both of us are in the near future, are going to end-up living on the streets here in Salem, New Hampshire.

    Also, I myself have been told, that I do not qualify for any kind of housing assistance whatsoever.

    Therefore, on the day I will be homeless sometime in the near future, I will drive up to the NH State Capital of Concord, and heave a brick through the NH Republican Party Headquarters to get myself arrested, so that I will have a “place to live” in the NH State Prison there in Concord, NH.

    That is what it will take for and Autistic with Cerebral Palsy like myself to finally receive social services, other than the monthly social security payment and medicare I now receive.

    Sincerely,

    Thomas Charles Wood,
    Disability Self-Advocate

  5. Dadvocate says:

    In this highly credible survey, planned and intentional communities came in as the second most popular choice (and was a very very close second.) Nearly 30% of the people surveyed who have autism preferred a planned community! This should give great pause to legislators and policy makers who may be tempted to buy into the false choice limiting narrative being sold by the ARC and others that “one size fits all.” The CMS proposal to narrowly and ideologically define the fundamentally broad concept of community is not what the autism community wants. It should be totally scrapped.

  6. N. W. Litteral Litteral says:

    In doing the survey about housing did you find states and/or cities where housing possibilities were better than other places ? What can families do to facilitate solutions to the lack of housing options ? Thank you being proactive about this horrible situation…which impacts many young people who have not qualified for other support and need minimal support plus affordable place to live.

  7. jackie says:

    things are tough for EVERYONE as far as housing is concerned. i realize the concept of “institution” has gotten a bad rap. living “in the community” does not guarantee you will be invited to the neighbor’s cookout. i hardly know my neighbors, & i’ve lived in my house for 14 yrs. after reading an article about planned communities for those with Alzheimers ( in Holland ) I found myself warming up to the concept- people with similar issues, similar needs, sharing their lives- i know Autism & Alzheimers are far removed from each other, but doing something intentionally ( a planned community ) is not always a bad thing. if enough resources were pooled, folks could get away from the high crime neighborhoods, still have their independence, but help would be close at hand when needed. if i end up with Alzheimers, Holland, here i come- hope the US figures out this could be a good thing for families- safety & peace of mind for those with special needs siblings.

  8. Ana says:

    I am not sure the emphasis on “community” living is the best way to approach DD adult housing. This often means putting DD adults in foster care, in private homes, with strangers. Yes, higher functioning disabled folks can sometimes live on their own or enjoy a foster care situation. But for many, living in a residential community designed especially for DD adults, with appropriate amenities is really more appropriate…however, many old schoolers resist this model (as do funders) calling such models “institutional” living. I disagree. Modern “institutions” today are vastly different than the mentally institutions of the past. Modern group homes and villages for the disabled are no different than college living – separate units/rooms, ability to make decisions, but plenty of support and amenities such as pools, game rooms, arts programs, outdoor space and lots of off site activities. This is a great model. Putting folks in “foster” care in the “community” is neither safe nor enriching. DD Adults end up being isolated from each other and thus never form the friendships and connections with their like situated peers that are so important. Families and caregivers bear a greater burden and there is less stability.

    I agree with many of poster Jackie’s sentiments on this issue. The pendulum has shifted to far towards the concept of “community” living, without really looking at the details of how that plays out in terms of quality of life.

    In the end, there is no one size fits all. But a broader lens needs to be adopted when contemplating what type of “community” is right. Birds of a feather enjoy being together…and many DD adults lack sustained contact with peers who they can relate to due to society’s current emphasis on mainstreaming. Mainstreaming has its benefits, but at a certain point the “integration” it seeks to achieve, evolves into being more form than substance…and ironically disabled people become incredibly isolated from each other and alone.

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