Wednesday, June 8, 2011

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).
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 

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