Courtesy Nick Dupree
Nick Dupree, who has muscular dystrophy, waged a successful battle to reform Alabama Medicaid laws governing in-home nursing care.
• Twenty-year-old Alabama resident Nick Dupree depends on 16 hours a day of in-home nursing care to carry on his daily activities. Currently, his nursing bills are covered under Medicaid's Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) program.
• EPSDT requires states to make all medically necessary treatment, including in-home nursing care, available to eligible children under 21 -- even if the state's Medicaid plan does not normally cover the service.
• When Dupree turns 21 on Feb. 23, he'll lose the in-home nursing benefits guaranteed by EPSDT guidelines.
• Alabama's Medicaid program provides only 12 hours a week of in-home nursing care for adults. Dupree's only full-time care option is institutionalization.
• In April 2002, a bill that would have would have extended Medicaid's EPSDT benefits past the age of 21 was withdrawn from the Alabama Senate.
• On Feb. 10, Alabama officials offered new hope, announcing a program that would extend benefits past age 21. The plan will not cover those whose benefits have already run out.
• On Feb. 11, U.S. Health and Human Services Secretary Tommy Thompson approved the new program.
• An estimated 10.1 million Americans require personal assistance with daily living activities. (Source: U.S. Census Bureau.)
In Alabama, college student Nick Dupree –- a young man who is so disabled that he can't move his body — took on the state health care system. Fighting a policy that he says would have forced him to move into a nursing home, Dupree asked the state to start a costly new program. At a time when rising health care costs are a leading cause of the highest state budget deficits since World War II, Dupree's chances of winning seemed dim at best. But as NPR's Joseph Shapiro reports, despite the odds, Dupree actually won.
A motorized wheelchair carries Dupree around; a portable ventilator keeps him alive. It's difficult to hear him speak. His words are weakened by his muscular dystrophy. But he's defiant when he says he wants the same things in life as anybody else.
"I want a life," Dupree says. "I just want a life. Like anyone else. Just like your life. Or anyone else's life."
Although Dupree cannot move his own body, he tries to make his life as normal as possible. Sixteen hours of nursing care each day allow Dupree to live at home with his family and attend nearby Spring Hill College in Mobile, Ala. Alabama's Medicaid program currently pays for Dupree's care, thanks to federal guidelines that require all states to provide such care –- to children.
But under Alabama's previous Medicaid policy, once Dupree turns 21 –- which happens Feb. 23 — the state would have stopped footing the bill for Dupree's in-home care.
Even with the nursing care provided by the state during the day, Dupree's mother, Ruth Belasco, must cover the night shift. Belasco, a college professor, cannot quit her job to care for Dupree full-time because it provides the health insurance that pays for the rest of her son’s health bills –- from doctor’s visits to the ventilator.
After Dupree turned 21, Alabama's previous Medicaid program would have paid for him to move to a nursing home, but he says institutional care could not have provided the constant attention he needs. He and his mother feared that if a ventilator tube came loose, an aide would not come by quickly enough to save his life.
Knowing of the changes that would occur upon his 21st birthday, two years ago Dupree took matters into his own hands. Using his limited mobility -– he has use of one thumb and an index finger –- Dupree launched a crusade from his computer to change Alabama law. He sent countless emails to politicians and policy makers and even launched a website, Nick's Crusade.
And now, with time running out before his 21st birthday, Dupree can at last claim victory: On Monday, Feb. 10, Alabama state officials announced they will start a new Medicaid program that will continue in-home nursing care to people like Dupree once they turn 21. U.S. Health and Human Services Secretary Tommy Thompson approved the new program on Tuesday, Feb. 11.
Mary Hayes Finch of Alabama Medicaid gives Dupree some credit for the change in policy.
"Certainly he's been very vocal and involved in the process, and he is to be commended for that," Finch said. "We have been working on the project for about a year and a half, trying to find options for him and others in his situation."
The new program will continue to provide nursing care to Dupree and up to 30 others in Alabama with severe disabilities who will turn 21 this year. It will also cover someone else who matters to Dupree — his brother, Jamie. Jamie has the same disease and needs the same care. He's 18.