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State Law:  Killed-- For Turning 21

by Nick Dupree

OpEdNews.Com

Dear Senator Kerry:

I'm Nick Dupree, a student at Spring Hill College in Mobile, Alabama and, now, a health care reform advocate. I got started with my activism in March 2001 when I began a campaign I called "Nick's Crusade 2003" to force Alabama Medicaid to end their policy of cutting off home care for people with disabilities just because they turn 21, a policy I had seen cause several deaths, and feared would cause my own death. I was born with a still-unidentified form of muscular dystrophy and after some medical malpractice along with a massive infection in 1991, went rapidly downhill.

I quickly lost the muscle strength to move much or breathe on my own. In 1994, I was trached and put on a ventilator. Since 1992 I had been able to live at home with my family, with home nursing care provided under Medicaid's federally mandated EPSDT program keeping me alive. I knew this support would be unplugged when I turned 21 and I knew what had happened to others.

What is really going on in many states is de facto eugenics. Even if the government doesn't directly intend it, what is happening is a culling out of society's "weakest" -- eugenics.

After seeing the writing on the wall, thinking hard about these issues, taking what I had learned from a political science class and getting some prodding from my grandmother, I turned all my anger at the system into

activism: letters, then a web site, then an email campaign and media campaign to build a grassroots movement, then a campaign for my legislation in Montgomery including a speech to the Alabama Senate Health Committee, then eventually the development and filing of a lawsuit against the governor and state Medicaid director. It worked. Two years of intense, daily, non-stop work and one exhaustion-related hospitalization later, I changed Alabama Medicaid forever. My lawsuit, along with significant pressure from CMS and the media, forced Alabama Medicaid to create a new waiver for ventilator-dependent people turning 21 and "aging out" of EPSDT. The waiver took effect the day before my birthday, February 23, 2003. I am safe, but the problem is still widespread, and deadly. My oldest friend, Chris Wiggins, turned 21, got his services cut off, and recently died when his ventilator popped off and no one was around him to simply reconnect it. If he had the care he needed, had lived in a better state where such care is provided, he would this be here and contributing to the community.

The change in Alabama is great news, but, at best, my victory only puts a tiny bucket underneath the broken floodgate that is our long term care system. Many people with disabilities with life-or-death support needs are falling, and will continue to fall, through our nation's Swiss cheese safety net. The stories I have are innumerable.

But you don't hear about this on the media at all.

I am writing to urge you to make long-term care reform a prominent part of your campaign. So far, none of the presidential candidates have made reform of the long-term care system visible in press events or debates.

People with disabilities' very real and dire issues are as invisible on the campaign trail as they are in our communities. Please, break the mold.

Decades after the eugenics movement supposedly ended, forced institutionalization and/or death from state-sanctioned neglect is still all too common. It nearly happened to ME! We are in crisis, a crisis that is imprisoning and killing many Americans, and should be a national outrage. As John F. Kennedy said in West Berlin, "freedom is indivisible, and when ONE MAN is enslaved, all are not free." America cannot continue to tolerate the status quo. It must end, and the MiCASSA legislation, the Medicaid Community Attendant Services and Supports Act, which you have strongly supported, could end it. People with disabilities will not be free without a national solution like MiCASSA, and no solution like MiCASSA will be won until a courageous leader makes it a visible national priority, as it should be, on par with prescription drugs in the national debate. I hope you will be that leader, and that president, who will take a stand and reform the long-term care system.

As my advocacy has grown, I've had the opportunity to get to know great advocates with disabilities like Becky Ogle who now is your disability adviser. If there's any way my voice or my story could aid your presidential campaign and/or the fight for MiCASSA, please have her or your staff write me. Thank you.

Sincerely,

Nick Dupree nickdupree@comcast.net