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Dr. Lanny Edelsohn speaks up in Delaware’s News Journal: State must be open to housing ideas for people with disabilities

DELAWARE VOICE

DR. LANNY EDELSOHN

Beth Miller’s recent article, “Families: Housing a matter of civil rights,” 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?”

This crisis has been looming on the horizon for some time, but easy answers have not been forthcoming despite the best efforts of many. The Homes For Life foundation has tried to do its part. This foundation, of which I am the president, has raised millions of dollars to build and furnish 25 homes and with condos in Delaware for 104 persons with intellectual and developmental disabilities through my wife Micki’s incredibly hard work, and the largess of corporations, foundations and friends over the past 25 years. We are a 501(c)3 foundation with no paid staff; Micki and our board have volunteered inestimable hours to make this happen.

On Oct. 31, we sponsored our first conference, Innovations in Residential Neighborhoods, to address the impending affordable housing crisis for all those with intellectual and developmental disabilities. Conference speakers presented innovative projects from around the country and abroad where those with intellectual and developmental disabilities are given additional choices of creative living arrangements. Sadly, to date, none of these innovations are available in our state. Over 90 people attended the conference and asked interesting and challenging questions leading to a better understanding of the needs in Delaware. The solutions will require the assistance and advice of our elected and appointed officials.

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.

“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 selfabusive 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.

A woman with Down syndrome or a man with autism are not sucking money out of the system but simply expressing their civil right to choose a setting that offers them safety as well as “life, liberty and the pursuit of happiness.”

Homes For Life foundation will continue to work diligently to find the most appropriate and affordable housing options for people with intellectual and developmental disabilities. We only hope Delaware is open to progressive and innovative solutions.

Dr. Lanny Edelsohn, a neurologist, is president of the Homes For Life foundation.

Permanent link to this article: http://www.familiesspeakingup.com/2014/11/05/dr-lanny-edelsohn-speaks-up-in-delawares-news-journal-state-must-be-open-to-housing-ideas-for-people-with-disabilities/

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