A young friend

This article is posted in its entirety withe the permission of its author.

I met Nick Dupree in a chat room in the middle of last year. Nick is an extremely well spoken young man and well liked by everyone at that cyber hangout.

I hope the HTML shows up. (nope I guess not)(looks like the photo ain't goin either darn it)

Buzzcook

Dupree's quest for care reaches critical point http://ican.com/images/discovery/nick_dupree2003_small90.jpg
By Nick Dupree
iCan News Service, contributor
January 16, 2003

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My quest to stop Alabama Medicaid from ending my home care services when I turn 21 years old is now reaching a critical point. Nearly two years ago, I began working to end the institutional bias and get all Americans with disabilities the supports they need to live independent, healthy lives, but my efforts thus far have yet to produce a positive outcome. The stress and uncertainty is building even more as I close in on Feb. 23, the day I turn 21 and lose the nursing care available to me under Medicaid's Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) program.

The federally mandated EPSDT program is the only long-term home care program providing enough care hours to avoid institutionalization in Alabama and often in other states like Georgia, Mississippi and Louisiana, where they have some of the lowest average incomes, poorest state budgets and lowest Medicaid budgets in the country.

Unfortunately, when Medicaid passed in 1965, Congress set up the 21 age limit for EPSDT because the program's intent is to provide care for children. This means I will no longer be eligible for the care that keeps me at home and alive when I turn 21. At the stroke of midnight the night of my birthday I will lose those services. Some states' Medicaids, like in Massachusetts, Maine and Pennsylvania, have programs for adults that would allow someone to continue receiving care. But Alabama and others have just met the minimum requirements. The only programs available for adults with physical disabilities here are for respite care - 12 hours a week. The bare minimum for me to get along would be 12 hours a day.

On March 13, 2001, I launched Nick's Crusade, my campaign to change these policies, and the Web site NicksCrusade.com. I knew Medicaid didn't have to be this way and set out to single-handedly change it.

I was able to get a bill introduced in the Alabama State Senate in early 2002 to simply force Medicaid to continue the same care people had before age 21, after 21. "The Adult Private Duty Nursing Expansion Act," aka "The Nick Dupree Adult Care Act" sailed through committee but was stalled by Medicaid opposition and false rumors about its cost.

Medicaid told people my bill would cost between $79 million and $100 million. Other info and a leaked memo from Medicaid lead me to believe the actual cost would be $500,000 to $2 million annually. Alabama's Medicaid program has a budget of $3 billion.

The bill finally had to be withdrawn in April 2002 as it stood no chance of passage. Alabama's new 2003 legislative session does not start until March, after my birthday.

The federal MiCASSA legislation that would make community-based services mandatory for states, that I, ADAPT and many others have been pushing for has not passed.

Although I've made repeated appearances on local TV since August 2001, and have gotten widespread attention and support among the disability community, I am at square one almost two years later. Alabama Medicaid's policies have not changed. I am headed for my birthday with the 21 cutoff intact and waiting for me. There are no clear solutions in sight, no advocacy plan guaranteed to fix this.

My family and I will not accept the other long-term care option Medicaid is offering us, a nursing home more than three hours away in Louisiana. They will care for me at home with no support if it comes to that. I don't know what next month holds or how my care needs will be met. I am filled with fear and uncertainty about how I will survive. I don't have the answers to what will happen after Feb. 23 yet. But, one way or another, I expect to spend the rest of my life fighting for the care that I and other people with disabilities need to be home, happy and independent. You will hear from me again.

Let all illusions that the current home care system is adequate be shattered. The system is broken. Join me in trying aggressively to fix it. Call, write, e-mail, take part in protests, make some noise! Let's make 2003 an active, productive year!


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Nick Dupree, 20, lives in Mobile, Ala. He has an unknown form of muscular dystrophy and relies on Medicaid to provide skilled nursing services that allow him to live at home.

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Related iCan stories
More stories on MiCASSA and Medicaid reform
Profile: Nick Dupree fights to live at home
http://ican.com/news/fullpage.cfm?articleid=9F076E1B-A560-4ADF-A0E8D7C96CEE0B7A&cx=news.special_reports
A guide to asserting your rights
http://ican.com/news/fullpage.cfm?articleid=3238F4A8-BA56-49A6-8C60153C390F31F3&cx=issues.get_involved
Meeting with lawmaker is worth the nerves
http://ican.com/news/fullpage.cfm/articleid/2E35D365-9946-4D97-806EC44B7D5003AE/cx/news.opinion/article.cfm

Resources on the Web
Nick's Crusade 2003
http://www.nickscrusade.com/