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Disability Groups Urge Feds To Decide On Community Living


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Months after the end of a public comment period, dozens of disability advocacy groups are pressuring Medicaid to make a final decision on new rules that would define what qualifies as community-based housing.

In a joint letter sent last week to officials at the Centers for Medicare and Medicaid Services, nearly 100 advocacy groups asked the government agency to “move swiftly” on a proposed regulation that would limit the types of qualifying residences under Medicaid home and community-based services waivers.

The proposal, issued in April, called for the exclusion of homes designed exclusively for those with disabilities as well as residences with “regimented meal and sleep times, limitations on visitors, lack of privacy and other attributes that limit individual’s ability to engage freely in the community.”

Medicaid officials say the proposed rules were prompted after they heard reports of homes built on the sites of former institutions that were being labeled “community-based.”

But months after the public comment period closed this summer, Medicaid officials have not yet made a move to issue a final rule, which would be necessary for the regulation to be implemented.

“Any delay is really unfortunate,” says Ari Ne’eman, president of the Autistic Self Advocacy Network, and one of the organizers behind the letter. “We’ve got 95 organizations from across the country on board here and it seems pretty clear that the disability community stands solidly behind a strong definition of home and community-based services.”

Nonetheless, the proposed rules are not without opposition. Among the hundreds of public comments submitted to Medicaid were those from parents who believe that their children would be best served by living in a community of their peers with disabilities.

Medicaid officials say they have no specific timetable for issuing a final regulation.

“We do not have a target date for final publication of the regulation but finalizing it remains a priority,” wrote Alper Ozinal, a CMS spokesman, in an e-mailed statement to Disability Scoop. “We received a substantial number of public comments. While we are not surprised by the level of public input…, we have considerable work to review, categorize, evaluate, consider and respond to each comment, as required.”

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Comments (3 Responses)

  1. disabilitiesrightsadvocate says:

    While some people may have been able to convince themselves that these consumers “would be best served by living in a community of their peers with disabilities”, the actuality is that we are all peers; with or without disabilities. The concept behind the most integrated setting set forth by the Olmstead decision indicates that people with disabilities are more than capable of living within the mainstream community and this would be possible with proper supports and services. Individuals with disabilities would most likely benefit more by living settings beyond group homes, res-habs and other congregate settings that seemingly mirror the same parameters of the outmoded institutions. Moreover, the community at large has the most to gain by having individuals with disabilities living independently and being integrated into mainstream residences. Afterall, individuals with disabilities DO EXIST and have the same rights to independence as anyone else.

  2. JR says:

    The changes proposed by CMS last April would limit the use of Home and Community Based Service Waivers to only those settings found acceptable, not by the affected individuals, but by advocates following their own rigid ideology. This ideology is a fantasy of many disability advocates that all people, regardless of the nature or severity of their disabilities, can live in “the community” without the specialized programs and settings that so many rely on for their survival. This ideology is not grounded in the law, the Supreme Court Olmstead decision, reality, or common sense.

    The Supreme Court Olmstead decision supports choice, despite the fact that it has been widely misinterpreted as a mandate to close all institutions: “We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings…Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” 119 S. Ct. at 2187.

    Furthermore, the Olmstead decision does not comment specifically on or mandate the closure of community-based programs or residential placements of any particular size nor does it designate these programs as institutional in nature and therefore discriminatory. Olmstead, and by extension the Americans with Disabilities Act, gives no support to eliminating or limiting access to settings that are “institution like”, housing complexes that are “disability-specific” and “expressly designed around an individual’s diagnosis”, if these services are appropriate to the needs of the individual.

    There are hundreds of thousands of people with disabilities on waiting lists for services across the country and there is no shortage of ideas for improving the lives of people with developmental disabilities. When CMS deliberately and unnecessarily narrows the choice of options available based on a misinterpretation of law and a questionable ideology, it becomes an impediment to creating a system that can truly meet the needs of the full range of people with developmental disabilities, especially for those who are either not served at all or inadequately served by our current system.

  3. kathyd says:

    There is a very broad spectrum of needs represented by the part of our population who have developmental disabilities. The point of a continuum of care is to address the unique needs of individuals. Additionally, the element of choice is legally mandated. The American Disabilities Act, as well as the Supreme Court Olmstead decision which interprets it, very specifically defines the right of choice of an institution as well as “community.” For some, specialized communities can and do provide for assisted independence in ways that living accommodations in the general community cannot or does not. Given unlimited money, perhaps that would be less often the case, but public funding must be stretched to meet the needs of as many people as possible. I lived for years with the ideal that my family member with profound id and extremely severe physical disabilities would live happily in the general community. Truth? Our family was unable to sustain the constant levels of attention that her conditions required and, elsewhere in the general community, there proved not to be nearly sufficient resources for her: financial, personal or professional. The care that was available to her and others with such severe disabilities was so pathetically sub-standard that it would never have been tolerated by CMS in an institution. She now lives in a community of peers with disabilities. Her choice of bedtime IS honored, her likes and dislikes ARE taken into account and she is supported in choices that accommodate both. All of her professional services are centrally located so she can have appointments without yielding all the rest of the day to them. She does not have a job in the general community, but then, that would be absurd, since her mental age , while still progressing at age 62, is still not greater than 24 months. She does, however, enjoy a short bus ride to and from work 5 days a week. And she DOES enjoy her supported workshop job of crushing cans, which she does by hitting a big red button. She is delighted with the sound it makes. Would she like to do something else instead? Other jobs have been offered and she has tried them, but this is what she likes best. Where she lives, in a shared home on a campus that is designed specifically to accommodate the unique and varied needs of people with disabilities, she is very happy and extremely well cared for. And, economy-of-scale works in favor of keeping costs for such care lower than in small homes scattered throughout the general community. Is this how everyone with disabilities should be required to live? Absolutely not. Everyone should be allowed and encouraged to exercise their right of choice and the CMS should leave bias out of their rule-writing. Could her professional providers also serve people who live off campus? Absolutely. Is there unused property on the campus that could be developed for independent living by people with dd/id in proximity to needed professional resources? Absolutely. Should anyone be required to live there? No, of course not. Should people be allowed to choose to live there? Absolutely. Lets let CHOICE really work and take advantage of the benefits afforded by it.

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