Michigan comments on CMS proposed rules (CMS-2296-P)

If you would like to see a good sampling of comments from Michiganders on the CMS proposed rules, follow this link.

The proposals from the Centers for Medicare and Medicaid Services would limit where Home and Community Based Services could be provided, causing disruption for people already living and receiving services in settings that would no longer be approved by the CMS. For future recipients of HCBS services, their choice of options would be restricted to those determined by CMS to be "integrated in the community"  and "not institutional in nature".

As you will see, there are a variety of views on these proposals and many thoughtful responses.

White House disability call features Jill Biden, Lynnae Ruttledge, and Sharon Lewis

White House disability calls occur once a month to keep you informed on a variety of issues and to introduce you to people who work on disability issues in the Federal government.

If you would like to be added to the White House Disability Group e-mail distribution list, e-mail disability@who.eop.gov and provide your full name, city, state, and organization.

Dr. Jill Biden will be speaking from Greece. She is leading a Presidential delegation to the Special Olympics in Athens. Also on the call will be Lynnae Ruttledge, Commissioner of the Rehabilitation Services Administration, and Sharon Lewis, Commissioner of the Administration on Developmental Disabilities.

Call in at least five minutes early to participate in the call.
 
Conference call information:

Dial in for listeners: 800-230-1951

Title: White House Disability Call (use instead of code)

Date of Call: 06/27/2011

Start Time: 10:30 AM Eastern (dial in 5 minutes early)

Arkansas v. DOJ: Federal Court supports parents and guardians and defines integration under the ADA

The U.S. Department of Justice spent years trying to prove that the Conway Human Development Center in Arkansas (an Intermediate Care Facility for the Mentally Retarded - ICF/MR) violated the rights of its residents under the U.S. Constitution and the Americans with Disabilities Act by providing substandard care and failing to integrate residents into the community.  The Court resoundingly disagreed and dismissed the case.

Why is this case important? The Americans with Disabilities Act and its interpretation by the Supreme Court in the Olmstead decision have been cited by many professionals and advocates to argue against all forms of congregate living and specialized services provided in group settings. They incorrectly claim that grouping people with disabilities together is segregating and therefore discrimination under the ADA. This case shows that even in a larger facility, the needs of the individual, the appropriateness of care, and the voices of parents and guardians are paramount in defining the least restrictive environment for each person. Non-institutional settings do not inherently guarantee the greatest integration possible for any individual. To limit services and residential options to "non-disability" settings does nothing to assure that a particular individual will be integrated into the community to the extent appropriate or possible for that person.

Here is a summary of the case from VOR, the only national organization that supports a full range of services and residential options for people with intellectual and developmental disabilities, including home and community based services and ICFs/MR. VOR (of which I am a member) is supporting legislation, H.R. 2032, to restore individual and family decisionmaking in cases such as this one.

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U.S. v. Arkansas: Victory for Choice
http://vor.net/get-help/legal-resources
 
Background
In an 85-page ruling, Chief U.S. District Judge J. Leon Holmes dismissed a U.S. Department of Justice (DOJ) case finding that the DOJ failed to prove its claims that the Conway Human Development Center violated its residents’ rights under the U.S. Constitution by providing substandard care, as well as under the Americans with Disabilities Act (ADA) (community integration). Judge Holmes questioned the authority, expertise and methods of several expert witnesses used to support the federal government’s arguments. He extensively cited testimony of residents’ parents and guardians who he noted were “overwhelmingly satisfied” with the treatment the residents receive at Conway and “believe that the Center is the least restrictive, most integrated placement appropriate for their children and wards.”  (U.S. v. Arkansas, p. 8)

Family / Guardian Decisionmaking
“Most lawsuits are brought by persons who believe their rights have been violated. Not this one . . . All or nearly all of those residents have parents or guardians who have the power to assert the legal rights of their children or wards. Those parents and guardians, so far as the record shows, oppose the claims of the United States. Thus, the United States [Department of Justice] is in the odd position of asserting that certain persons’ rights have been and are being violated while those persons – through their parents and guardians disagree.”  (Id., p. 1).

Defining Integration
“’Community placement’ is a term that implies a more integrated, less restrictive setting than does the term “institution,” but it does not follow from the use of these terms that a resident automatically will have a greater degree of interaction in community placement, i.e., with a waiver provider, than in an institution such as Conway Human Development Center.  The evidence establishes that residents of Conway Human Development Center do interact with nondisabled persons – the Center is not a prison with inmates barred from interaction with the outside world; and conversely, the evidence establishes that placement with a waiver provider does not guarantee any amount of interaction with nondisabled persons.” (Id., p. 61; see also, p. 81, citing Olmstead, “[DOJ] Failed to prove that Conway Human Development Center is not the most integrated setting appropriate to the needs of any specific resident.”)

The “oddity” of a federal agency suing itself
[DOJ cases = DOJ v. HHS (CMS); compare to, P&A cases = HHS (ADD) v. HHS (CMS)].
“It is another oddity of this case that the institution at issue is funded and regulated by one department  of the executive branch of the federal government while another department of the executive branch contends that its conditions are so deplorable as to violate rights guaranteed to the institution’s residents by the United States Constitution. More pointedly, the United States simultaneously funds Conway Developmental Center, certifies it as eligible for those federal funds, and contends that the conditions there are so deplorable as to be unconstitutional.” [Id., p. 4 (fn 2)].

Compare to H.R. 2032
Just as the federal judge in the Conway case recognized, families and guardians are a necessary and important voice in matters impacting their family members with significant intellectual and developmental disabilities, including where they receive services and the quality of those services (see also, DD Act and Olmstead). 

H.R. 2032 aims to restore individual and family decisionmaking in federally funded class action lawsuits and DOJ actions. Specifically, H.R. 2032 provides that residents of ICFs/MR, or where appointed, their legal guardians, receive notice of a federally-funded class action lawsuit involving the ICF/MR before it is filed, and be given a time limited opportunity to opt out.  H.R. 2032 also requires that DOJ consult with families as part of any action, and if a lawsuit is filed provides residents of the affected ICF/MR or where appointed, their legal guardians, a right of intervention. The Conway case helps demonstrates both the value of family/guardian input and DOJ’s history of excluding their input. Similar examples include cases in Virginia, Georgia, Illinois and Tennessee

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Read the full decision here.

More comments on proposed HCBS regulations (CMS-2296-P)

Comments from Ed Diegel at ddAdvocates of Michigan, 6/1/11:

This is a time of tremendous change regarding funding, ideology and governance of the service delivery process for persons with Developmental Disabilities.
 ...
Ideology is becoming more rigidly entrenched in a system which often minimizes the value of family involvement and favors a one dimensional, full inclusion model for all persons with developmental disabilities without regard for their capabilities, or personal desires and choices. 

Common-sense, which says keep what is good  and build on it, is ignored. It would define a success as a community that provides a full spectrum of  services to meet the needs and desires of all persons with developmental disabilities—from the most involved to the most independent; and it would allow individuals the right to move back and forth between settings as their circumstances and desires changed.

Instead current ideology sees all ‘consumers’ including the most disabled living in completely integrated settings; something many neither want nor can handle. In addition it threatens funding for even the most successful ‘congregate settings’ based on artificial criteria like the number of residents or workers, or flexibility of meal time rather than real benchmarks like the quality of supports provided and the desire of clients to participate there. 

Advocacy agencies including several in Michigan envision the elimination of all congregate settings and activities (group homes, work shops, Special Olympics, Fun Clubs and so on).
...

Most imminent of these issues are proposed regulation changes impacting the Home and Community Based Services Waiver administered by the Centers for Medicare and Medicaid Services (CMS).

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More comments from Ed, 6/8/11 

The following link to Age of Autism is must reading for anyone in the country who considers themselves an advocate for persons with developmental disabilities. Notice that the author nowhere wants to restrict services or the independence of high functioning person with disabilities; for instance: those  who are capable of enjoying even full time jobs, college experiences and home ownership. What the author wants, and many people who commented on the link want is for CMS  to recognize that its proposed residential guidelines: 

• will be too limiting or demanding for most persons with severe to moderate disabilities and that
• needed and desired and appropriate services will be ruled out and / or dismantled.

One size fits all mentality is very popular in mainstream advocacy circles in Michigan and its effects are already being seen in

• underfunding of congregate day programs 
• efforts to close larger group homes regardless of quality of service 
• limited housing and respite options for the most severely impaired.

In effect, mainstream advocates hold up the capabilities of our most capable children and adults  and pretend that the rest don't exist or will be able to tag along. This mentality is now being reflected in proposed CMS Guidelines for housing ... 

Link to Age of Autism here. 

Comments on CMS proposed regulations are due by 5 p.m. June 14, 2011

Submit comments electronically here .

Link to proposed regulations here. 

Link to Understanding HCBS Waivers here. 

Link to ddAdvocates of Michigan here. 

Link to comments on proposed CMS regulations submitted by Jill Barker here.