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.


Take action!

Tell the government that you support the proposed CMS regulations!

Sign the petition to Prevent Abuse of Adults with Autism and Other Disabilities!

Sign the petition to  Makes Laws to Protect Children & Individuals with Disabilities

Related Care2 Coverage

Autistic Man Was Illegally Detained in Care Unit, UK Court Rules

Disabled Children Abused and Beaten in State Institutions

Photo Patsy Lynch (This image is from the FEMA Photo Library.) [Public domain], via Wikimedia Commons


Shirley M.
Shirley Marsh6 years ago

There is a need for both community and institutionalised care, the latter for those unable to take care of themselves and have nobody of their own to help them.

I have personally witnessed the gradual decline of an alcoholic paranoid schizophrenic dumped on the 'community'. She refuses her medication, and has reached the stage where she lives on her own, in a public housing complex, in an apartment covered in wall-to-wall excrement and little else. She defecates wherever she is, is constantly bleeding from inside, and was hospitalised when a concerned tenant phone for an ambulance.

A few weeks later she was back in her apartment (which had been cleaned, fumigated and repainted), and has gone back to square one, still bleeding internally and living in filth.

This woman is gravely ill, and nobody is taking responsibility for her care. She will probably die soon because of this. Sometimes 'community care' is a euphemism for 'no care' so governments can cut their costs and 'stay within budget'!

Lynn C.
Lynn C6 years ago

Elle B. I want to thank you for your comment. Your points were well spoken.

Elle B.
Elle B6 years ago

Why would so many choose "A Coke and A Smile" and large servings of entertainment while our more vulnerable fellow citizens don't have 3-squares and roofs over their heads. What are we saying about ourselves when we do this? It's absolutely ridiculous and nothing more than silly selfish nonsense. We are quite capable of quite easily - doing so much better - if we just put our minds to it. We do not have a funding-spending problem - that is manufactured. We have a profits before people problem.

"To talk about "corporate greed" is like talking about "military weapons" or something like that- there just is no other possibility. A corporation is something that is trying to maximize power and profit: that's what it is." ~Noam Chomsky

"We can have democracy in this country, or we can have great wealth concentrated in the hands of a few, but we can’t have both." ~Louis D. Brandeis

1-“Public right comes first and private interests second.” ~Theodore Roosevelt

2-"The government is us; we are the government, you and I." ~Theodore Roosevelt

Elle B.
Elle B6 years ago

"What do we live for, if it is not to make life less difficult for each other?" ~George Eliot

It is not an "either or" situation - but is one that is comprehensive and inclusive. We need community based housing and services for disabled citizens - to actually be located and provided within our "communities" period. Having served as both an advocate and legal guardian for persons with disabilities, I can attest that this is essential and is an optimal solution for providing quality basic living for many disabled members of our society. [The only difficulties I experienced were with inept contracted "for profit" firms who hired unqualified employees to provide support services in the effort to keep costs down and profits up. that was an easy fix-don't use them.] Transitional and permanent housing residences - designed for groups and individuals on institution grounds are very necessary as well - but serve people with different needs and are a "separate funding" matter. Supportive-care residences on institution grounds do not qualify as "community-based" living; therefore funds allocated for their construction and maintenance do not simultaneously satisfy requirements to provide supported-care and independent living for disabled persons in their communities. I live in a region where we do all of the above well and intend to do it even better for more. . .BECAUSE IT WORKS.
Why do so many choose "A Coke and A Smile" and large servings of entertainment while our more

Brian P.
.6 years ago

The right to live and die with dignity is something the regressive right would prefer to deny people as there is little profit in it for them.

Warehousing the most vulnerable people when, with a little help, many are capable of living a life of dignity and self-determination demonstrates a complete lack of compassion and humanity. This is not a hallmark of a truly civilized society.

Norma V.
Norma Villarreal6 years ago

Petitions signed.

Bernadette P.
berny p6 years ago

All "institutions" aren't like the asylums of old, you know.

Some are good, caring places.

And any is probably better than the streets, which is right where a lot of disabled people have been ending up.

No meds, no care, no safe place to sleep, no regular meals. At least an institution would provide those basics.

NOT everyone can cope with this in a family help is a blessing

Empress Ginger
Ginger Strivelli6 years ago

those of us who take care of our disabled family members in the home, need more support so we can do so because that is the best place for them, and because it is cheaper than putting them in group homes or nursing homes, for the tax payer.

Lin Moy
Lin M6 years ago

I think some is good. You can't always find good care any place. If the care givers are paid more think of the differance this type of care might be. If it were me I'd rather have a private room/bath with others to see and talk to as I wanted, not be all lumped together and sharing a bath with several people. I just saw a vidio where workers were so mean it was terrible. Perhaps a raise in pay would prevent this.

Sharon Beth Long
Sharon Beth Long6 years ago

See below. Is good home care or a good community residence more expensive than institutional care? Probably not. However other people in the community see the services that these disabled people are getting, much of which, like discounted transportation or homecare, many others in the community who do not fit under the "disabled" category can benefit from. Therefore, it frequently seems that the government is "spending a lot" on discharged chronically ill patients. Meanwhile the public just assumes that large long term health care institutions that are kept out of the public eye, generally in relatively isolated locations, need lots of money. Also like military bases and prisons long term care institutions can be pointed to as providing a lot of secure government employment for lower skilled workers in a community. Scattered community residences, which even if they have some staffing, have a lot of this work (like cooking) done by the residents themselves or groundswork or security done by the super of the rented house or apartment and thus cannot make the same claim.