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Report: States Lagging On Community Living

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States are failing to meet their obligations to transition individuals with disabilities out of institutions and into community settings, a year-long investigation finds.

The U.S. Supreme Court ruled more than a decade ago in a case known as Olmstead v. L.C. that unnecessarily segregating individuals with disabilities in institutions is a violation of the Americans with Disabilities Act. Nonetheless, a report set to be released Thursday by the U.S. Senate Health, Education, Labor and Pensions Committee finds that the number of people with disabilities in nursing homes is on the rise and, as of 2010, just a dozen states devoted the majority of their Medicaid dollars to community-based care.

“The Supreme Court’s decision in Olmstead was a landmark moment for the disability community,” said Sen. Tom Harkin, D-Iowa, who chairs the committee. “Yet … 14 years later, many states are still not making a commitment to provide all individuals with disabilities the choice to live in their own homes and communities. This is amazing given that study after study has shown that home and community-based care is not only what people want, but is more cost-effective.”

Last year, Harkin asked officials from all 50 states to provide him with information about their progress in transitioning individuals with disabilities out of institutions. The report being issued this week details what the senator found.

Across the country, hundreds of thousands of people with disabilities remain on waiting lists for Medicaid home and community-based services. Meanwhile, the percentage of Medicaid funding spent on these integrated offerings varied widely from more than 80 percent to less than 20 percent in some states in 2009, the report indicates.

Comparing the situation from one state to another is difficult, however, due to varying terminology and the lack of a uniform reporting system to assess which states are meeting obligations under Olmstead. In Hawaii and Minnesota, for example, the report found that a “home” could include living in a car or being homeless. And in Texas, two-dozen types of facilities qualify as group homes.

Many states have focused more on enrolling people already living in the community in Medicaid programs as opposed to transitioning people in institutions to more integrated settings, according to the report. In cases where individuals were moved out of institutions, however, it was unclear whether or not they ended up in the most integrated environments.

The Senate committee’s report urges the U.S. Department of Justice to expand its Olmstead enforcement efforts. In addition, recommendations call for Congress to bolster the rights of Americans with disabilities to receive services and supports in community-based settings.

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Comments (6 Responses)

  1. Mark L. Olson says:

    Senator Harkin is a great advocate for the disabled, but in this report he is wrong. Wrong about what Olmstead means. Wrong about what many disabled people and their caregivers want. Olmstead is about choice. Harkin’s report is about eliminating choice – “…for virtually all people with disabilities, the most appropriate integrated setting is their own home.” This simply is not true for all persons with disabilities. The most appropriate integrated setting is the setting a person with a disability freely chooses from the broadest spectrum of options. Period. This is what Olmstead concluded, and this is what federal and state policy should support. A person with a disability who is eligible for LTSS should be able to use those funds wherever the person chooses. Justification for funding and quality of life and quality of care has nothing to do with the setting…it has everything to do with the civil right of the person to choose their setting and how the setting is supported and operated. Persons with disabilities can be just as isolated living alone in their own homes and victimized just as frequently (with no oversight or protections) as in any other setting. An individual apartment or home can have all the qualities of an “institution” as a badly-run state facility in Georgia. “Community” is what the disabled person decides for himself or herself, not what CMS or NCD or DoJ decide. Even worse, “scattered-site” housing is discrimination…pure and simple. Segregating disabled persons from each other with separation rules and denial of funding is cruel and un-American. Congressional hearings should be held to avoid the fast-tracking of Harkin’s recommendations, to give the broader population of disabled persons an opportunity to express their desires for choice, and to open the minds of federal and state agencies to achieve a fair outcome for all persons with disabilities.

  2. Betsy Farmer says:

    I couldn’t agree more with Mark Olson…. especially “The most appropriate integrated setting is the setting a person with a disability freely chooses from the broadest spectrum of options. Period. This is what Olmstead concluded, and this is what federal and state policy should support”. As a mother of an amazing young man with Down syndrome I know what is best for him… He needs a safe place to live with the proper supports and he has told me he wants to live “with his friends” . Living included the greater community would not be the best choice for him. – he would be isolated and not have the quality of life he deserves. It’s time for the Feds to wake up and be realistic…. There isn’t enough $ for support services to go around now – how on earth do they think they could support individuals with IDD to all live isolated in their own home in the greater community….Yes, this is a Civil Rights issue… stop trying to take away my sons Civil Rights to choose where he wants to live!!

  3. Harris Capps says:

    Although this article is well written, it takes a narrow and misleading view of the Olmstead Decision. The Supreme Court held that public entities are required to provide community-based services to persons with disabilities when (a) such services are appropriate; (b) the affected persons do not oppose community-based treatment; and (c) community-based services can be reasonably accommodated, taking into account the resources available to the entity and the needs of others who are receiving disability services from the entity. This article seems to intentionally omit Olmstead’s Paragraph “b”. Intermediate Care Facilities (ICFs) have been derogatorily called “institutions”. Just as the term “retarded” was replaced, so too does the term “institution”, as it conveys historical reminders of gothic buildings from the 1800’s used to house the Mentally ill as well as the intellectually disabled. Most ICFs are higher quality than the community facilities. Three facts remain clear: 1) Many persons with ID and their parents/guardians want to REMAIN in ICFs. (this right is upheld by Olmstead) 2) With waiting lists in the hundreds of thousands why are organizations trying to close down existing excellent facilities? 3) the great majority of existing COMMUNITY facilities are in no way prepared to provide critical services to more involved residents. Moreover, reports of serious impacts to ID persons who have been moved to Community based services testify to community based neglect, abuse, and death.

  4. Cheryl Felak says:

    What is the obligation to move residents out of their homes in intermediate care facilities to so-called community settings? What agency mandated this supposed obligation? Where was this order issued in Olmstead? If so, I don’t see it. I see that the Olmstead Decision honors individual (together with family/guardians if needed) choice. There are no mandates to evict people from their safe homes only to be isolated and forgotten in the “community setting.”

    What about the rights for individuals to receive services in the setting that they choose? This is what Olmstead really says yet this is not how these “recommendations” are implemented, There is no obligation to move people but I do believe there is an obligation to safely care for them in the least restrictive environment for THEM. This is the choice.

    Just today, I was with a mother and sun (age 15) volunteering at a supportive community setting. This is a safe campus setting with a real community – the residents are able to walk about freely – no gates, no locks and people are friendly and know one another. Residents can visit friends in other houses close by without having to cross a street. The mother asked me how she could arrange to have her son live there when he is older – she has mentioned it to her case-worker and the case worker told her that she (the mom) would not want her son to go there – well, actually, the case-worker was wrong.

    There are many who do want to live in these supportive communities. As this mom told me, if her son was in a house he would just be sitting inside all day because there would not be enough staff to take him out and do things. Is that “community” – it’s not to me.

    I told her that it is important for families with younger kids to see these supportive communities and to speak up that they may want to utilize these services in the future. I hope they do before we the Department of Justice and CMS remove choice and redefine “community” to the restrictive artificial definition they are considering and there are no supportive communities left where our loved ones can safely live with the needed supports.

  5. Elaine Hime says:

    I support choice as the three people below expressed and I acknowledge that not all people with disabilities will not choose a community option over a “state supported living center (SSLC)” which is the current name for state schools in Texas or an Intermediate Care Facility for Person with IDD . However with long waiting list for a community slot of 10-12 years in Texas with the options are placement in a nursing home, SSLC or an ICFIDD to access needed services for a family of a child with disabilities under 18 – how does that represent choice? The community choice is taken away for 10-12 years until the person reaches the top of the waiting list and receives a community “slot” which I thought was the reason Olmstead was filed.
    Personally I had advocated to keep my adult son who has multiple disabilities and is medically fragile at home with us with his community option because I know that the level of care we give that totals 108 hours a week along with the private duty nursing he receives of 60 hours a week from the state is a higher level of care he would receive in a SSLC or ICF. And our care for our son living at home with us with the state support cost the state less when compared to the cost in a SSLC or ICF.
    All 13 l SSLC in Texas has been under investigation by the US Dept of Justice for death, abuse and neglect and are failing the US Dept of Justice Correction Plan. There are organizations in Texas that help people living in SSLC move and transition to a limited number of community “slot” but state does not appropriate enough community slots for all people residing in SSLC who want to choose community so again – how does that represent choice?
    I do not agree that most ICFs are at a higher quality that community facilities based on my experience of personally being involved in an ICF for children with disabilities when the state shut the facility down for death and poor management.

  6. David G. says:

    This reminds me of the wonderful promise anticipated in the Frank Melville Act “reforms” of the HUD Sec. 811 programs – which dropped funding for group homes and proscribes any “congregate” housing for disabled adults, even if they WANT to live near each other! Thanks a lot for nothing!

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