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Providing information, education, and training to build knowledge, develop skills, and change attitudes that will lead to increased independence, productivity, self determination, integration and inclusion (IPSII) for people with developmental disabilities and their families.

Alabama Medicaid Policy Blamed For Friend's Death
By Dave Reynolds, Inclusion Daily Express
March 29, 2004

MOBILE, ALABAMA--On the night of March 4, Chris Wiggins' ventilator tube became disconnected. Nobody in his home woke up to the alarms in time to save his life. By the time he was found and taken to the hospital, it was too late for him to recover.

Chris died five days later. He was 26 years old.

Chris had muscular dystrophy and was eligible for in-home supports through Medicaid until he turned 21. After that, he had the choice of staying in a nursing home or living with his parents -- but without 24-hour support.

Nick Dupree was Chris' life-long friend.

Three years ago this month, Dupree launched "Nick's Crusade", a public awareness campaign to get Alabama's Medicaid program to fund in-home services for people over the age of 21. On February 10, 2003, U.S. Health and Human Services Secretary Tommy G. Thompson announced that the federal government would approve a limited program in Alabama that would continue Medicaid funded in-home services for Dupree and 29 other young people who were nearing their 21st birthday.

This meant little for Alabamans who had already turned 21, including Chris Wiggins.

"Chris was a person," Dupree wrote last week. "His death was totally preventable, and only the fault of the awful situation of near-total lack of services in Alabama."

Dupree noted that Chris' death was the fifth one of its kind that he knows of in Mobile alone.

"We know that when care is not provided to people who need care to survive, they don't survive."

"I think it's fair to ask, what is being done to protect people from dying due to very preventable lack of care again and again in the future? What does it take to get some Olmstead litigation to force state Medicaids to move some of their institutional funding into community services? When will Congress even acknowledge this issue and hold hearings on MiCASSA? Does America care?"

"How many times will this have to happen?"

Dupree, who is now 22, said last year that he would dedicate the rest of his life to "make sure everyone can be safe and live in their community and not locked away in a faraway nursing home".

"I'll keep advocating for major changes, keep writing, keep speaking around the country, keep studying, and keep trying to fix my own care, so it's enabling me to live a full life instead of trapping and preventing life as it is now," he wrote last week. "I will continue to work on these issues."

"And I need all the help I can get."

Related:
"Medicaid policy causes another 21 cut-off death, close to home" open letter by Nick Dupree

http://www.InclusionDaily.com/news/advocacy/nick032904.htm
Nick's Crusade
http://www.nickscrusade.com

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