An Institution Is No Home: Medicaid Regulations For Community Living for Individuals with Disabilities
Support from Medicaid Home and Community Based Services (HCBS) makes it possible for many Americans with disabilities to live in community-based settings, rather than in institutions. Last year, the Centers for Medicare and Medicaid Services (CMS) refused to allow the state of Missouri to use HCBS funding to build group homes for individuals with disabilities on the grounds of an institution and, rightfully so: A group home built in such a place is hardly what is meant by “community-based housing.”
Now CMS is seeking to put regulations in place, to prevent what nearly happened in Missouri from happening elsewhere in the future. CMS’s proposed rulemaking can be seen here: These are regulations to prevent HCBS funds from being used for (as the Autistic Self-Advocacy Network says) “institutional facilities, settings which are on the grounds of an institution, settings which are segregated on the basis of disability and settings which have the characteristics of an institution, such as lack of privacy or rules about when people can eat and sleep.”
Until Tuesday, June 14th at 5:00 pm, the public can make comments about the proposed regulations by:
- going here to tell the government that you support such regulations; you can also add comments about why such rules, which establish minimum standards for community-based living, are crucial to the quality of life of individuals with disabilities;
- asking others to send in their support for the regulations too.
As the Autistic Self-Advocacy Network says:
…we know that the usual suspects in the institution and nursing home industry have already written in opposing any standards for how HCBS dollars are used. We need people to write in to tell CMS that community living does not occur on the grounds of an institution and doesn’t include arbitrary restrictions on the rights of people with disabilities.
Just recently a British court ruled that 21-year-old Steven Neary, who’s autistic, was unlawfully detained by the local council of Hillingdon, who had claimed he must be housed in a care unit rather than live at home with his father, Mark Neary. The tragic death of 13-year-old Jonathan Carey, who was killed when a careworker restrained him in a minivan in 2007, has opened an investigation by the state of New York into abuses and mistreatment of individuals with developmental and other disabilities in state institutions. A recent BBC Panorama investigation of Winterbourne (a private care hospital in Bristol in the UK) also makes it all too clear about the abuses that can, and do, happen to individuals with disabilities in institutional settings.
Just as it’s imperative that every effort be made for children with disabilities to be included in school settings, so must individuals with disabilities be included in their communities; must adults live in community-based housing, with their families and those who love and care for them.
Tell the government that you support the proposed CMS regulations!
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Photo Patsy Lynch (This image is from the FEMA Photo Library.) [Public domain], via Wikimedia Commons