"My son would literally die if we dispense with
disability-specific housing options"
disability-specific housing options"
by Lisa Graziano
I wish we lived in the kind of perfect world in which Medicaid’s HCBS Rules appears to assume we live. A world where all persons with developmental disabilities are able to make their own well-reasoned decisions about where and how they wish to live, where they work side-by-side their non-disabled colleagues and are safe and wholly embraced and supported by their non-disabled community.
Unfortunately, in the world in which we really live, my son would literally die if we dispense with disability-specific housing options.
I wish we lived in the kind of perfect world in which Medicaid’s HCBS Rules appears to assume we live. A world where all persons with developmental disabilities are able to make their own well-reasoned decisions about where and how they wish to live, where they work side-by-side their non-disabled colleagues and are safe and wholly embraced and supported by their non-disabled community.
Unfortunately, in the world in which we really live, my son would literally die if we dispense with disability-specific housing options.
My son has Prader-Willi syndrome (PWS) and for the past 14 years I’ve worked with the Prader-Willi California Foundation, a non-profit charity that serves people who have his rare developmental disability. PWCF is extremely concerned about HCBS because in the real world, these new regulations, if narrowly construed, could eliminate residential and vocational options for my son and other people with disabilities.
Our loved ones with PWS have an insatiable drive to eat no matter how much food they consume and require significant residential and vocational supports. If food is not strictly controlled and locked away, people with PWS will die from stomach rupture or from other food-related complications. Adults with PWS must live, work, and play in settings that are specifically designed to meet their unique health and welfare needs – namely that the refrigerator and food cupboards are locked at all times, trash cans are emptied and secured, there is no access to money or credit cards that could be used to purchase food items, there is continuous supervision to ensure they don’t ask or beg neighbors or otherwise engage their community for food, and they receive support to manage the often violent behavior outbursts common for the syndrome. Without appropriate restrictions, people with PWS will literally eat themselves to death and/or engage in trespasses in relentless attempts to find food.
Our loved ones with PWS have an insatiable drive to eat no matter how much food they consume and require significant residential and vocational supports. If food is not strictly controlled and locked away, people with PWS will die from stomach rupture or from other food-related complications. Adults with PWS must live, work, and play in settings that are specifically designed to meet their unique health and welfare needs – namely that the refrigerator and food cupboards are locked at all times, trash cans are emptied and secured, there is no access to money or credit cards that could be used to purchase food items, there is continuous supervision to ensure they don’t ask or beg neighbors or otherwise engage their community for food, and they receive support to manage the often violent behavior outbursts common for the syndrome. Without appropriate restrictions, people with PWS will literally eat themselves to death and/or engage in trespasses in relentless attempts to find food.
Any attempt to integrate people with disabilities in a one-size-fits-all cookie cutter approach, like the federal Medicaid agency CMS appears to be attempting, actually reduces choice and further isolates people with developmental disabilities.
Any attempt to integrate people with disabilities in a one-size-fits-all cookie cutter approach, like the federal Medicaid agency CMS appears to be attempting, actually reduces choice and further isolates people with developmental disabilities. My son wants to live in a group-oriented community setting with other people who share his disability. He wants to live, work, and play with the friends he’s grown up with who also happen to have a disability. But new CMS rules threaten to disallow him to live in a safe and welcoming community setting. On the contrary, my son may be free to eat as much food as his brain drives him to eat, will be isolated in his own apartment, and unable to regularly interact or work with friends in a place that’s safe for him and others.
PWCF supports Autism Society San Francisco Bay Area’s voice for choice, and we share their growing concern about the devastating unintended consequences that may be created by the new HCBS Rules. We stand ready to advocate for the changes that are necessary to ensure the health and welfare of not only our adults with PWS, but for all persons with developmental disabilities.
Lisa Graziano, M.A. is the Executive Director of the Prader-Willi California Foundation (www.pwcf.org). PWCF is a 501(c)(3) non-profit charity dedicated since 1979 to serving persons with Prader-Willi syndrome, their families, and the professionals who serve them.
Learn more about the new CMS rules in SFASA's previous blog posts:
The Federal Government's Quiet War Against Adults with Autism
You Can Choose Where You Want to Live... Unless You Have Autism
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