Hopefully we're just a wee bit closer. Heard this individual on NPR, very moving story.
http://www.npr.org/display_pages/features/feature_974391.html
portion of: Fighting the Medicaid System
Ala. Youth Crusades to Extend Nursing Care for Disabled
Nick Dupree, who has muscular dystrophy, is fighting to reform Alabama Medicaid laws governing in-home nursing care.
Nick's Dilemma
• 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• In April 2002, a bill that would have would have extended Medicaid's EPSDT benefits past the age of 21 was withdrawn from the Alabama Senate.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.
• An estimated 10.1 million Americans require personal assistance with daily living activities. (Source: U.S. Census Bureau.)
Feb. 10, 2003 -- In Alabama, college student Nick Dupree –- a young man who is so disabled that he can't move his body -- is taking on the state health care system. Fighting a policy that he says might force him to move into a nursing home, Dupree is asking the state to start a costly new program. That might seem unlikely at a time when rising health care costs are a leading cause of the highest state budget deficits since World War II. But as NPR's Joseph Shapiro reports, it looks like Nick Dupree might just win.
Barely five feet tall, Dupree is a small man. A motorized wheelchair carries him around; a portable ventilator keeps him alive. It's difficult to hear Dupree 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 current Medicaid policy, once Dupree turns 21 –- which happens Feb. 23 -- the state will stop footing the bill for Dupree's in-home care.....
Further reading
http://www.ican.com/news/fullpage.c...14DACD5B12/cx/issues.get_involved/article.cfm
http://www.nickscrusade.com/
http://www.npr.org/display_pages/features/feature_974391.html
portion of: Fighting the Medicaid System
Ala. Youth Crusades to Extend Nursing Care for Disabled
Nick Dupree, who has muscular dystrophy, is fighting to reform Alabama Medicaid laws governing in-home nursing care.
Nick's Dilemma
• 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.
• An estimated 10.1 million Americans require personal assistance with daily living activities. (Source: U.S. Census Bureau.)
Feb. 10, 2003 -- In Alabama, college student Nick Dupree –- a young man who is so disabled that he can't move his body -- is taking on the state health care system. Fighting a policy that he says might force him to move into a nursing home, Dupree is asking the state to start a costly new program. That might seem unlikely at a time when rising health care costs are a leading cause of the highest state budget deficits since World War II. But as NPR's Joseph Shapiro reports, it looks like Nick Dupree might just win.
Barely five feet tall, Dupree is a small man. A motorized wheelchair carries him around; a portable ventilator keeps him alive. It's difficult to hear Dupree 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 current Medicaid policy, once Dupree turns 21 –- which happens Feb. 23 -- the state will stop footing the bill for Dupree's in-home care.....
Further reading
http://www.ican.com/news/fullpage.c...14DACD5B12/cx/issues.get_involved/article.cfm
http://www.nickscrusade.com/
