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? Policy developed to protect and empower those with autism and other intellectual and developmental disabilities is creating unintentional barriers.

In response to the overwhelming need for affordable and accessible housing and in light of reports of abuse and poor transition outcomes, local solutions are being created across the country. Their aim is to offer person-centered housing models in a variety of settings. Not only do these options fill the massive housing gap, they save taxpayer dollars.

A major source of public funding for adults on the spectrum is called Home & Community-Based Service (HCBS) waivers. These waivers were created to “waive” the need for institutional level of care and to give more housing options to people with disabilities. Unfortunately, changes in regulations may shut the door on many housing choices if they do not meet the emerging state criteria for being “home & community-based.” The state may reject supportive living options such as intentional communities, working ranches, or even collegiate programs as these have been labeled by CMS as “settings that tend to isolate.”

Individuals with autism must now prove that their residential choice is a valid “home and community setting” as considered by state and federal leaders who regulate HCBS funding. Madison House Autism Foundation believes that every setting should be scrutinized at the highest standard to make sure all individuals receiving publicly funded services are supported to meet their independence, employment, and lifestyle goals.

Madison House has 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. Yet, in recent CMS guidance on ‘Planned Construction of Presumed Institutional Settings’, CMS encourages “stakeholders would not invest in the construction of settings that are presumed to have institutional qualities.” 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 HCBS Mini-STP Toolkit.

About the Author

Desiree Kameka, Director of Housing

Desiree is the project lead for the Autism Housing Network. Her work for the Madison House Autism Foundation focuses on researching housing issues, advocating on issues of autism in adulthood, and presenting her work at local and national gatherings. She visits residential communities and social enterprises across the USA and highlights their unique victories and learning curves while sharing stories of individuals on the spectrum or who have other developmental disabilities. Her passion is empowering autistic adults and parents to create a future that is exciting and life affirming by offering small group consultations for forming projects.