Home > Family Services > Proposed Rule Changes to Home and Community Based Services (Part II)

Proposed Rule Changes to Home and Community Based Services (Part II)

This blog post is by Desiree Kameka, Director of Community Relations, at The Madison House Foundation.

The Madison House Foundation maintains that the proposed rule change for Home and Community Based Service (HCBS) waiver would limit choice, stunt innovative housing solutions which are more sustainable, and negate the right to person-centered planning which are key elements the proposal is striving toward. If this proposed language is adopted, it will not only be devastating to thousands of adults with autism, but will absolutely devastate each and every community as our national economy CAN NOT HANDLE this incoming wave of needed housing without creative community collaboration!

“Independent living, freedom and choice” was the focus of a report developed by a partnership between the Autistic Self Advocacy Network (ASAN) and other self-advocacy groups in support of the HCBS waiver revision proposal. It is imperative that the voices of those with disabilities are heard and they offered very important suggested policy guidelines, especially in the area of needed supports and agency relationship to client. Although their definition of community offered to the Center for Medicare & Medicaid Services (CMS) to define “home and community-based” settings will strip the choice of many who voluntarily choose to live in other types of communities.

People, including those with autism, are not a homogenous group. Personally, I choose to live in an intentional community with 17 others in the heart of Washington, DC where I can walk to my favorite restaurants/stores, take a bus to class, sit in the local park, and go dancing in a nearby dance studio. My mother, on the other hand, would be appalled if she were told she could choose any house, but it must be located in the DC-metro area. For her, living on a farm, working from home and spending time with her horses is her ideal. The structural location, geographic community, and nearby amenities are vastly different in both of our living arrangements; yet, it’s the people who love and live with us, not the place, that defines our home. Therefore, any language within the proposed amendments MUST NOT LIMIT choices of the diverse population who will be receiving its needed assistance by defining what a community is not. To force adults to live in a setting which cannot meet their specific autistic needs in a location which they do not prefer for the purpose of being “integrated” is ludicrous! Many typically-abled city dwellers can share the loneliness, isolation, and lack of belonging one can feel even when surrounded by people.

All can agree that the atrocities of institutionalization must never be repeated, but the NY Times study in March 2011 exposed institutional-like abuses, not done in a large congregate care facilities, but hidden under our noses in urban and suburban group homes with less than 6 residents. One cannot even begin to imagine “community” in the midst of physical, spiritual, and financial abuse. With the advances in affordable security technology, education on self-determination, and person-centered philosophies, the fact that this kind of abuse still occurs is a slap in the face of humanity. If the CMS seriously desires to set standards and expectations of service providers, major initiatives of accountability, continuing education, and incentives of Direct Care Providers are needed!

Thus, the definition of “community” should not in any way be tied to physical size, number of residents, or geographic access to public amenities in unrealistic hopes to avoid institutional-like abuses. Community is synonymous with relationships, and relationships are found between the hearts of those who live, work, and play together. If the CMS desires to identify home and community-based settings, they must evaluate people, not places.

Gene Bensinger  reflects on the proposed change here.

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*Editors Note: The viewpoints expressed by the author do not necessarily reflect the viewpoints of the Autism Speaks. The purpose of the items posted is to provide relevant, on-topic dialogue among members of the autism community.

  1. June 10, 2011 at 1:45 pm

    For the record, the ASAN report that is being referenced unequivocally supports the proposed CMS rulemaking, which is strongly supported by the self-advocacy movement. Madison House Foundation’s use of our report to oppose CMS’ proposed rulemaking is a clear misrepresentation of the voices of people with disabilities and the plain language of our report’s recommendations. A link to our report can be found here: http://www.autisticadvocacy.org/documents/KeepingthePromise-SelfAdvocatesDefiningtheMeaningofCommunity.pdf

    • June 11, 2011 at 2:27 pm

      Ari, I believe you may have misread this article. MHF was not in any way suggesting that ASAN opposed the CMS proposed rulemaking! We clearly confirmed that you were in support of the changes AND emphasized that is it imperative that self-advocates are NOT ONLY HEARD, but that they have LEADERSHIP in these discussions! What MHF was highlighting in this article, was that we believe the definition of “home and community-based” settings should not exclude choices which some in the autistic community prefer… We maintain “community” is about relationship and a sense of belonging- NOT size and structure of a house. See quote: ““Independent living, freedom and choice” was the focus of a report developed by a partnership between the Autistic Self Advocacy Network (ASAN) and other self-advocacy groups in support of the HCBS waiver revision proposal. It is imperative that the voices of those with disabilities are heard and they offered very important suggested policy guidelines, especially in the area of needed supports and agency relationship to client.”

  2. Gene Bensinger
    June 13, 2011 at 11:51 am

    Ne’eman’s ASAN report in support of the CMS proposed choice limiting Medicaid HCBS waiver rules is excellent evidence that his groups’s agenda is extreme and out of touch with mainstream thinking in the broader autism community. While self-advocacy is critically important and self-advocates are absolutely entitled to have a seat at the table, the choices and desires of self-advocates are only that. Their choices and desires. A seat at the table comes with the responsibility to recognize the needs of other stakeholders with whom they may disagree on some issues. I wish ASAN would remember that from time to time. Public policy needs to be flexible to accomodate a wide range of choice when funding the needs of people with autism. Our community is very diverse and CMS needs to recognize this reality. Not everyone goes off to college and can self-advocate or live independently, in fact very few do. Listening only to those who can, whether in the autism or broader disability community is wrong and will result in limited choices for many who may have differing needs. Policy makers can and should do better than these proposals. Not every ICF is a Willowbrook and not every independent living arrangement is rainbows and unicorns. Choice, appropriate to the needs and wishes of the person with a disability, should be the bedrock principle. The proposed CMS regulations are fatally flawed in that regard.

  1. June 15, 2011 at 1:50 pm

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