Living Independently

By Steve Gold

Steve Gold

The Center for Medicare and Medicaid Services has issued its Proposed Rules, which define what it means to live in “a home and community-based setting.” See 77 Federal Register at 26382.  We think it is important for your voices to be heard and your comments must be submitted and received before 7/2/12.

While some disability advocates have responded to CMS previously regarding the same issue, many providers and other service entrepreneurs (for profit and not-for-profit) have a different view regarding what “home and community-based setting” means.  CMS, instead of just doing the right thing, seems to have gotten frightened by the outpouring from the providers and has requested additional comments.

In a thumbnail, we always thought that people with disabilities want to live in settings just like people without disabilities with the same rights and responsibilities.  What a revolutionary idea!  Hmmm.  Here are some points you might want to include if you write to CMS

Fair Housing Symbol

1. Nondisabled people do not have their housing conditioned on whether or not they accept services.Therefore, housing rights for people with disabilities should be entirely separated from services that a person may or may not want, need or desire without any conditions related to services.
2. Nondisabled people are afforded the protections (and assume the   responsibilities) from eviction under your State’s landlord tenant law.Therefore, disabled people should have the same rights, protections and responsibilities under your State’s landlord tenant law.
3. Nondisabled people, wherever they reside, have an absolute right, wherever they reside to the following minimum rights.Therefore, if a person with a disability resides in a “provider-owned or controlled residential setting,” the following minimum rights should be required no “wiggle room,” no “if, and, or buts,” no presumptions of any kind that undercut or infringe on these minimums:
   1. A lease under the State’s landlord tenant law protecting against illegal evictions.
   2. Privacy in sleeping and living units.  This means a lockable entrance.
   3. Sharing units ONLY if person with disability freely and knowingly wants to share and with person of one’s choice.
   4. Right to decorate sleeping and living units.
   5. Control own schedules and access to food at any time.
   6. Visitors of their choosing at any time.
   7. Physically accessible.

Nondisabled persons would not consider it a “home” if they did not have ALL of these protections.

Tell CMS no restrictions of basic housing rights for persons with disabilities.  Tell CMS not to fund services in settings which do not comply.

Are we missing something?  Aren’t these basic, minimal human rights? What does it matter if the person is disabled or nondisabled?

Advocates — send your comments to:

Centers for Medicare & Medicaid Services
Dept. of Health and Human Services
Attention: CMS-2249-P2
P.O.Box 8016
Baltimore, MD 21244-8016

These must be received before July 2, 2012.

– Steve Gold, The Disability Odyssey continues

Back issues of other Information Bulletins are available online at: http://www.stevegoldada.com with a searchable Archive at this site divided into different subjects. As of August 2010, Information Bulletins will also be posted on my blog located at: http://stevegoldada.blogspot.com/

To contact Steve Gold directly, write to stevegoldada1@gmail.com or call 215-627-7100. Ext 227.

ADAPT, Around Colorado, Around the country, System Change CMS, HCBS, housing

June 21, 2011

The Administrator of the federal Medicaid program came to Atlantis on Tuesday because of an invitation of former CPWD employee Dawn Russell. Dawn met the head of the Center for Medicare and Medicaid Services during an ADAPT Action in Washington DC and challenged him to speak with the disability community here in Colorado.

Dr. Donald Berwick, Administrator of CMS

“I have been at Center for Medicare and Medicaid Services just about one year,” said Dr. Berwick to about forty people gathered at Atlantis, “and as I look back on the year, I will tell you that no experience I have had – not one – exceeds the chance to know ADAPT and the group of people I have come to admire so much.”

Dawn Russell told everyone that Atlantis has worked for 37 years to move people out of nursing homes, but even with the Colorado Medicaid program people have lost their jobs because the reimbursement is ineffective. She pointed out that people receiving Medicaid services in the nursing home one day, could not get Medicaid services in the community the next day because of a bureaucratic “coding” change.

Different than any other Medicaid program, Community Transition Agencies like CPWD are asked to serve individuals without a guarantee of their Medicaid eligibility and thus final payment. Likewise, reimbursement is only for successful transitions and only $850 regardless of the time and effort spent to make a successful transition.

There were many questions from the community on AT and other CMS issues. Alice Beasley, a Medicaid recipient was Medicaid eligible in Washington, but since she moved to Colorado sixty-four days ago, still is not found to be Medicaid eligible by our state. The result is that PASCO, who provides the care to keep her alive, has not been paid. Other Medicaid providers could have not accepted her as a client.

Julie Reiskin of CCDC told the Administrator of the unintended consequences of CMS punishment for state mistakes. She said the state in return looks to end the program or cut services rather than correct errors.

Tim Thorton the Executive Director of Atlantis said that the Medicaid rates for non-skilled services are too low, he pointed out that he loses about two dollars per hour to pay his employees for this covered Medicaid service and that does not include Administrative costs.

“What I say to you here, is that I will do my best. We need your voices,” Dr. Berwick said, “don’t put away your sledgehammer because this is still a struggle.”

Dr. Berwick speaks to a crowd of about 40 at Atlantis

ADAPT, Around Colorado, Around the country, System Change Berwick, CMS, HCBS, Medicaid