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

By Tim Wheat

Governor John Hickenlooper of Colorado

(DENVER, July 22, 2011) Gov. John Hickenlooper rejected ADAPT’s demand that he commit to Colorado pursuing the federal Community First Choice (CFC) Option within the Health Care Reform Legislation. CFC Option provides the state money to assist moving people from expensive institutions and nursing homes. Hickenlooper did believe it was a good idea and he did want to avoid delay in Colorado’s progress like we did in 2005 when we missed out on the first federal offering of the Money Follows the Person grant.

Dawn Russell gave the governor the opportunity to support the additional money by asking if he had heard the request.

“I got it,” said Hickenlooper.

Activists outlined the need for the CFC Option and changes to the Medicaid eligibility determination by the state. One ADAPT activist said that the group was still bitter that Colorado had failed to apply for Money Follows the person back in 2005. Colorado did apply for the federal funds last year and were awarded $22 million this April, but the delay has not only been expensive in millions of dollars, but also in the lives of people still trapped in institutions.

“If we don’t apply for CFC now we will just see that same kind of delay and our state missing out of federal funds to end the Medicaid bias,” said the ADAPT activist.

Hickenlooper got the message, but he would not go any further.

“I cannot make a commitment because I don’t know all the details,” said the governor.

Colorado ADAPT meets with the Governor

Following the twenty-five minute meeting with the governor the ADAPT group met and discussed the next steps. The indirect message from the Department of Human Services is that they are too busy to commit to pursuing the federal funds; although everyone in the state Department seems to be in favor of the proposed option.

ADAPT confronted the governor with this because his commitment would prevent Colorado from missing out on a beneficial, needed program like we did in 2005. The federal offering takes state resources to apply for the program; however, the funds that come into the state will help to improve the existing Medicaid program.

“It is not only the federal money for Colorado,” said Dawn Russell, “but it also means saving a lot of money by moving people out of expensive institutions.”

Meeting Bicha and Birch

The evening before ADAPT met with the governor, Sue Birch, the Executive Director of the Colorado Health Care Policy and Finance Division (HCPF) and Reggie Bicha, the Director of the Colorado Department of Human Services were at Atlantis to directly confront the problems with Medicaid eligibility. People in Colorado Eligible for Medicaid services are often forced an in-human amount of time simply to be determined eligible by the state system.

“I was Medicaid eligible when I left Colorado, I was eligible when I moved to Washington,” said Alice Bozeman, “but when I moved back to Colorado it took 83-days for the system to find me eligible again. Atlantis provided me services during that time even though the Medicaid system told them not to; Atlantis saved my life.”

Director Birch said that the Administration was setting eligibility determination as a high priority and that by the end of October HCPF would have some clear improvements for customers and providers to look at.

“We will be back to say we need you to come to the table to tell us how we can make the system work,” said Reggie Bicha to Dawn Russell who pressed the bureaucrats for a realistic timeline. “We are building the team now.”

Getting people out of nursing homes is a passion of ADAPT and activists pointed out how the system would provide Medicaid Long Term Care services to people in the nursing home but on the day they move out, their status had to be re-coded by the state system that could take many months. Providers of home services don’t get paid until that re-coding is complete. Not only are many providers unwilling to take nursing home transfers, but the system is obviously bias to pay expensive facility care over home and community services.

Alice Bozeman

Director Birch brought with her two employees of the statewide effort to interconnect the electronic information of Medicaid customers. Although there is much promise and millions of dollars being put toward the upgraded computer systems, those same systems have also often been the most oppressive of barriers that Medicaid recipients have faced.

Previously Dawn Russell had told of a person who she helped transition into the community out of a nursing home. Although he carried a letter with him from John Berry, the head of Long-Term Care in Colorado, no service provider would provide necessary services to him because the computer system did not list his Medicaid eligibility.

Even though someone in a nursing home is served by the same Medicaid program, it requires a human technician to “re-code” a person when they move out of the expensive facility. Regardless of the proposed computer system, this simple “human” glitch has slowed citizens move back to the community and is costly to the state.

More Photos: http://www.facebook.com/media/set/?set=a.196366823750996.62592.145326032188409&l=b3840738c1&type=1

ADAPT, Around Colorado, System Change ADAPT, Colorado Governor, HCBS, John Hickenlooper, MFP, money follows the person, Nursing Home Transition

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