Delaware: Funding for innovative housing for DD - Whose money is it, anyway?

Many housing projects, including planned communities for people with developmental disabilities, have been built in recent years that use flexible Medicaid funding to provide services to people wherever they choose to live. Federal Medicaid law explicitly prohibits Medicaid waiver money or other Home and Community Based Services (HCBS) funding from paying for housing. Many family organizations, however, have built or found housing that is uniquely designed for people with very specialized needs and have then used HCBS funding to pay for services for the individuals who live in these homes. 

A new rule from CMS, the federal agency that regulates Medicare and Medicaid, has set standards for what CMS considers to be suitable settings to promote integration into the community.  

Consistent with the Americans with Disabilities Act and the 1999 Supreme Court Olmstead decision, states must administer the full array of home and community-based services in the most integrated setting appropriate to the needs of qualified individuals with disabilities. The new rule, however, threatens to limit Medicaid funds in settings that are deemed too institutional in nature by CMS standards and force individuals with disabilities to jump through hoops to justify their choices, if they want to live in settings that come under special scrutiny by the CMS. In addition, many advocacy organizations that ideologically support forced deinstitutionalization and oppose all congregate settings (settings that serve more than 3 or 4 individuals with disabilities together), are pushing to have states limit and eliminate settings that they do not like. This is a problem, especially for people with the most severe and complex disabilities who are also people who often need and benefit most from congregate care or services in congregate settings.

Disability advocates claim that their ideological opposition to congregate care is supported by the 1999 Supreme Court Olmstead decision, but that is a misrepresentation of the decision's mandate. The Supreme Court took a balanced approach, finding that unjustified isolation of individuals with disabilities is discrimination under the Americans with Disabilities Act, but they explicitly stated that they did not condone "termination of institutional settings for persons unable to handle or benefit from community settings." They also recognized "… the States' need to maintain a range of facilities for the care and treatment of persons with mental disabilities, and the States' obligation to administer services with an even hand." The Supreme Court held that states may move people from institutional care to community only as long as the individual does not oppose the move. And, “…the ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk... ‘Each disabled person is entitled to treatment in the most integrated setting possible for that person — recognizing on a case-by-case basis, that setting may be an institution".

The Delaware Homes for Life Foundation sponsored a conference on October 31, 2014, called "Innovations in Residential Neighborhoods". Homes for Life was founded by Dr. Lanny Edelsohn and his wife Micki, the parents of an autistic adult son. The foundation has raised millions of dollars to build and furnish 27 homes for people with autism and other developmental disabilities. 

The conference was covered in an article on Delaware Online on 11/1/14 entitled  "Those with disabilities: Where should they live?" by Beth Miller. One of the speakers at the conference was from The Arc Village in Jacksonville, Florida, where ground will be broken soon on an $18.6 million, 97-unit community of affordable duplexes and triplexes to be rented by those with intellectual and developmental disabilities. Some of the discussion was about whether the new CMS rule on HCBS settings would allow residents who choose to live in planned communities access to Medicaid HCBS funding to pay for services where they live.

While the purpose of the conference was to showcase innovative housing ideas from around the nation, it was covered as a civil rights battle "simmering not far below the surface of local and national discussions on how and where people with intellectual and developmental disabilities... might live and work in the future."

Daniese McMullin-Powell, the Chair of the Delaware State Council for Persons with Disabilities, did not hold back when talking to the reporter about where she stood on the issue: 

"…to Daniese McMullin-Powell, a longtime disability rights activist who has handcuffed herself to the White House fence to make her case against life in institutions, the day's discussions made her feel like she had been to a 'segregationist meeting.'

"McMullin-Powell uses a power chair because of post-polio syndrome. She has children and grandchildren with a variety of disabilities – including autism and Down syndrome, she said.

"She wants all of them to have access to full lives in their communities. But she does not want government money used to support segregated communities for people with disabilities. That money should go to those who can live in ordinary community settings and want to do so.

"'This would suck up every drop of Medicaid money there is,' she said. 'If they want to choose congregate living, then let CMS use only nursing home money. Don't suck it all up because you want to live in summer camp forever.'"

Dr. Lanny Edelsohn answered the "startling" remarks by Deniese McMullin-Powell in an opinion piece, "Delaware must be open to new ideas on housing" on 11/4/14 on Delaware Online: 

"Beth Miller’s recent article… shines a most welcome light on an urgent issue in Delaware: the affordable housing crisis for adults with intellectual and developmental disabilities. In the state of Delaware, there are 2,900 persons living at home with parents who are 60 or older. These parents all ask the same question: 'What will happen to our loved ones when we are gone?'"

He goes on:

"In the article, I was startled to read the virulent comments by Daniese McMullin-Powell, Chair of the State Council for Persons with Disabilities, who had remained silent during the conference. While I disagree with each of her assertions as baseless, including her comments that she thought she was attending a segregationist meeting of rich white people (the conference was free, the attendees were clearly diverse and a tax return was not a requirement for admission), I am nonetheless most grateful for her finally revealing something that many in the disability community have long suspected but no one has yet had the courage or honesty to admit: that at the end of the day, this battle over the direction of the Medicaid waiver, while superficially clothed in the appealing rhetoric of 'rights,' is, like many things, actually about money. [emphasis added]
 
“'This would suck up every drop of Medicaid money there is,' she said. 'If they want to choose congregate living, then let CMS use only nursing home money. Don’t suck it all up because you want to live in summer camp forever.'
 
"By day, I am a neurologist who treats persons with autism, Down syndrome and other central nervous system disorders where there can be self-abusive behavior, PICA (eating foreign objects) or progressive early onset Alzheimer’s disease. Every week I treat patients who are in great need of safe and supervised environments. And I see families, struggling bravely and under great adversity, to care for them, often as their own health and welfare decline. I can assure you, from the patients I treat, that life is not a “summer camp”; rather, it more often resembles an exhausting challenge of relentless obstacles."
 
Thank you, Dr. Edelsohn. I couldn't have said it better myself.