ASAN:95 Disability Rights Groups

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Dear Administrator Berwick:

On behalf of the National Disability Leadership Alliance (NDLA) and a wide variety of allied organizations supporting the mission and goals of the disability rights movement, we write to urge you to issue a Final Rule clarifying that Home and Community Based Services must not be delivered on the grounds of an institution, in a housing complex designed expressly around an individual’s diagnosis or disability, or in a setting that has the characteristics of an institution. The National Disability Leadership Alliance (NDLA) is a coalition of 14 leading national disability organizations led by individuals living with disabilities themselves and supported by grassroots constituencies living with disabilities in all states and the District of Columbia. The Alliance prides itself on serving as a leading voice for those with disabilities and actively supporting the expansion and quality of the Medicaid Home and Community Based Services (HCBS) program. It is in this spirit that we and our allies contact you to urge you to move swiftly to issue a Final Rule in line with CMS’ stated policy positions and the clear intent of the Medicaid HCBS program.

In April of this year, CMS published a Notice of Proposed Rulemaking (CMS-2296-P) clarifying the types of settings for which Medicaid Home and Community Based Services (HCBS) waiver funding could be utilized. The proposed regulation would have clarified that a HCBS setting “must be integrated in the community; must not be located in a building that is also a publicly or privately operated facility that provides institutional treatment or custodial care; must not be located in a building on the grounds of, or immediately adjacent to, a public institution; or, must not be a housing complex designed expressly around an individual’s diagnosis or disability, as determined by the Secretary...[and] must not have qualities of an institution, as determined by the Secretary. Such qualities may include 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.”

We are writing to reiterate our support for CMS’s proposed definition of Home and Community Based Services outlined in CMS-2296-P, and to urge you to issue a Final Rule consistent with the principles laid out in your April NPRM. The integrity of the HCBS program is essential to protecting the rights of hundreds of thousands of Americans with disabilities who receive HCBS. Twenty-one years after the Americans with Disabilities Act (ADA) and twelve years after the Supreme Court’s Olmstead v. L.C. decision, it is imperative that CMS define what can and cannot be funded utilizing HCBS waiver dollars in specific and measurable terminology. Failure to do so would undercut efforts now being undertaken by both federal and state governments as well as advocates across the country to transition people with disabilities out of institutions and into the community in accordance with current law. Without a clear and sufficiently narrow definition of HCBS that delineates it from institutional settings, the effectiveness of deinstitutionalization efforts could be seriously hindered, leaving the door open to subjective interpretations by policymakers and the likelihood of wide-ranging and inconsistent applications of the rules. As such, we urge you to move swiftly to issue a Final Rule consistent with your April NPRM, defining appropriate and inappropriate usage of HCBS waiver dollars..."

Click below to read the full text of the letter and the names of the 95 signatory organizations.

Full NDLA Letter

NDLA Steering Committee Organizations

ADAPT
American Association of People with Disabilities
American Council of the Blind
Association of Programs for Rural Independent Living
Autistic Self Advocacy Network
Little People of America
National Association of the Deaf
National Coalition for Mental Health Recovery
National Council on Independent Living
National Federation of the Blind
Self Advocates Becoming Empowered
Not Dead Yet
United Spinal Association


The Autistic Self Advocacy Network (ASAN) is a non-profit organization run by and for Autistic people, fighting for disability rights in the world of autism. Working in fields such as public policy, media representation, research and systems change, ASAN hopes to empower Autistic people across the world to take control of their own lives and the future of our common community

Okay.

ok... so please in laymans terms... i'd like to know if this is asking for congress to do what exactly? i support community based programs. avoids the inevitable abuse of institutions. but please explain in fairly detailed laymans terms what this says.

Not everything can mean the same thing to everybody.

Google. Discover.

I'm just asking for an explanation. ASAN has to discover that some people can't read gibberish. this sort of stuff would be hard to find on google unless i really knew what i was looking for.

remember that nasty pm you sent me.

you are on your own

I don't have anything against your views. I don't like it when you hijack my threads and get them locked. I don't like it when you bully my friends. If you want to hold a grudge and keep usefull information from me because we had a little tiff then you just lose support.

all the info you need is within the OP

pick better friends

i pick civil people. represent yourself that way. i have friends who respect my decision to disagree, i have enemies who share my opinion. its ironic that so many people protest against NTs bullying autistics then turn around and bully other autistics.

bully you, I dont think so

trying to ignore and not have anything to do with ya, yes

see ya

This link from the ASAN provides the background information, provided in non legal language that explains the changes they support to integrate developmentally disabled individuals into the mainstream community through waivers for home and community based services, for current living arrangements in institutional settings.

http://www.autisticadvocacy.org/documents/KeepingthePromise-SelfAdvocatesDefiningtheMeaningofCommunity.pdf


Here is a link below, the notice of proposed rule making, NPRM, that ASAN and the NDLA supports, that puts into effect much of what they asked for in the first link. They are hoping to keep the final rulemaking as is. There was a 90 day period for people to comment on it, as I understand.

And, there was quite a bit of controversy over it, because some were concerned that the rights of the older more disabled individuals who may not support the change, are not being protected by the new proposed rule making. For example the proposed rule making limits the living arrangements to urban areas rather than rural areas, that may not appeal to everyone's idea of what community is supposed to be like.

Some of those comments can be found with a search on google on "CMS-2296-P", if you are interested in that part.

CMS-2296-P

http://edocket.access.gpo.gov/2011/pdf/2011-9116.pdf

After you read the first link it is much easier to understand the actual proposed rule, that the second link takes you to, if you want that kind of detail.

I think there was supposed to be a link in the initial Op that referred to the full NDLA letter, but it didn't work. I'm not sure you would gain the information you are seeking from it, anyway.

I personally think it is a good overall idea, but think it may be a little restrictive, in supporting those that are mildy disabled as opposed to those who are more significantly disabled per some of the comments I read regarding the proposed rule. I think it will be best if they take some of those restrictions out, to allow those that are happy where they are at, and don't want to move, to continue in that living arrangement, although I'm pretty sure the ASAN and NDLA opposes such an action, and hopes the proposal will stay as is, in the final rulemaking.

This is one of the reasons Ci was so fervently opposed to the fact that someone mildly disabled was representing the viewpoints of the entire autistic community; he felt like that could ultimately negatively impact some of those that were more disabled, if they were not able to speak for themselves. The proposed rule, though, has the support of the entire NDLA organization that the US President appointed the President of ASAN to.

The comments on it are pretty interesting if you do a search on the proposed rule.

Last edited by aghogday on 01 Dec 2011, 2:54 am, edited 1 time in total.

thank you ahogday. I read the articles and i fully support them. seems like its about time for some regulation on group homes who mislead people.