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Nick Dupree smiles as he comes out of the federal courthouse in Montgomery on Feb. 11, 2003. in The quadriplegic college student from Mobile had been struggling to change Alabama's Medicaid regulations and sued the state over his Medicaid-funded care. (File photo by Kiichiro Sato)
Nick Dupree, who called himself "a disability rights and Medicaid reform activist, writer, comic creator, painter," died Feb. 18, just five days before his 35th birthday, in New York City, where he had lived since 2008.
Born with a rare metabolic disorder, Dupree wasn't supposed to live past his 21st birthday. He was quadriplegic - able to move only the tip of his thumb and his index finger - and dependent on a respirator to breathe. His younger brother, Jamie Dupree, has the same disorder and lives in Mobile with their mother, Ruth Belsaco, a former fine arts professor at Spring Hill College.
In 2001, when he was a student at Spring Hill - he studied writing there, but never earned a degree - he launched a two-year online battle known as "Nick's Crusade."
At age 19, he traveled to Montgomery in February of 2002 to tell legislators why Medicaid in Alabama should continue to pay for in-home nursing care after he turned 21. He required 16 hours of nursing care per day.
"You're in between a rock and a hard place," Dupree told the Press-Register just a year before his own 21st birthday. "You can either stay at home without any care, hoping you don't die, or you go to a nursing home, where the care you get will probably ensure that you don't live."
A year later, just days before he turned 21, federal officials approved a new Medicaid waiver program to provide at-home care for him and 29 other disabled Alabamians on life support.
"I want people to think about the larger problem here," Dupree told the Press-Register in 2003, after his victory. "I plan to keep working on this for the rest of my life so that everyone can be safe and can be included in the community - and not locked in a faraway nursing home awaiting their death."
A memorial service was held on Feb. 23, Dupree's birthday, at Pauline A. Hartford Memorial Chapel in New York City.