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Would You Let Policymakers Choose Your Home? People with Disabilities Don’t Have a Choice.

With already so few opportunities and scarce funding available to adults on the autism spectrum, why would policymakers create even more hurdles for autistic adults or others with intellectual/developmental disabilities (I/DD)? Policy developed to protect and empower those with autism and other intellectual and developmental disabilities is creating unintentional barriers.

The main source of public funding for long-term support services is called Home & Community-Based Service (HCBS) waivers. These waivers were created to “waive” the need for institutional care and to give people with disabilities the opportunity to be supported in the greater community or in their own home. Unfortunately, changes in regulations may shut the door on many housing choices if they do not meet government criteria for being “home & community-based.” The issue is determining who should decide if a setting is “home and community” enough as highlighted in the Atlantic article, ‘Who Decides Where Autistic Adults Live?’

The state and/or CMS currently has the power to reject choices. And currently has specifically judged and labeled disability-specific housing, intentional communities, working ranches, or even residential campus-based programs as “settings that tend to isolate.” CMS guidance on ‘Planned Construction of Presumed Institutional Settings’ states that the intent of the regulations hoped “stakeholders would not invest in the construction of settings that are presumed to have institutional qualities” which would include the options they determined as “isolating” in their guidance.

Thus, individuals with disabilities who prefer those housing options CMS labeled “isolating” must prove that their residential choice is a valid “home and community setting” since state and federal leaders regulate HCBS funding. At this point, the government can take away their services- even if they or their family owns the home.

In response to the overwhelming need for affordable, accessible housing and in light of reports of abuse and poor transition outcomes, various types of local solutions are being created across the country. Their aim is to offer person-centered housing models based upon the demand in the local community. Not only do these options fill the massive housing gap, they save taxpayer dollars as they are typically funded by donations or family investment. We have met with key federal leaders of CMS at the Department of Health and Human Services to share the need and fervor of local community solutions as they often fall into the categories CMS has determined as “isolating.”

The Coalition for Community Choice believes that every setting should be scrutinized at the highest standard and the setting preferences of people with autism and I/DD individuals receiving publicly funded services honored. Person-centered planning and housing choices should not be limited by government bureaucrats, but ensure people can access individualized support in their own home to meet the person’s independence, employment, and lifestyle goals.

It is now up to advocates in every state to make sure that the choices of people with disabilities are honored and upheld by policy that is supposed to give their voice protection and authority, not restrict their life options. Learn more about what you can do to influence policy in your state with the Coalition for Community Choice’s helpful materials. You can also join the CCC for updates and action alerts!

A previous version of this article was originally posted on the Autism Housing Network on April 17th, 2016 by Desiree Kameka.


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