2/13/03
Alabama Student Wins Medicaid Waiver;
Fight Goes on for Those Not Covered
by Christina Medvescek
Many young adults are looking for ways to move out of their parents' houses on their 21st birthdays. But Nick Dupree is making his coming-of-age statement by fighting to stay home. And in the ongoing war for long-term home health care services for people with disabilities, it looks like he's won a battle.
Dupree, 20, of Mobile, Ala., has an uncategorized but severe form of muscular dystrophy and relies on a ventilator and power wheelchair to compensate for his almost total immobility. He lives with his mother, grandmother and younger brother, Jamie, 18, who has the same disease.
Dupree receives 16 hours a day of skilled nursing care through a Medicaid program for children called the Early and Periodic Screening, Diagnostic and Treatment (EPSDT) program. But on Feb. 23, he will turn 21 years old and "age out" of this program. As an adult, he faced the prospect of losing almost all of his in-home nursing care and having to move to an out-of-state nursing home to survive.
For almost two years, Dupree, a college junior majoring in writing, has mounted a letter-writing and petition campaign, trying to change this exclusion at either the state or federal level. In addition, he filed a federal suit on Jan. 31 seeking an injunction against termination of his services.
His goal was simple: to be able to live safely in his own community, in his own home, beyond the age of 21. On Feb. 10 -- less than two weeks before his birthday -- he got his wish.
"This is a small victory in a larger battle," he said. "The larger battle is to make sure that every person with a disability has what they need to survive and live happy and independent lives in the community, not in a nursing home."
'The Face of Evil'
On Feb. 10, the U.S. Department of Health and Human Services (HHS) announced approval of an Alabama proposal for a Medicaid waiver assuring continued in-home support for Medicaid-eligible young Alabamans who reach the age of 21. A waiver is a way for states to change their Medicaid regulations or programs to better serve Medicaid beneficiaries and help them avoid institutionalization. Waivers are good for three years, and may be renewed every five years thereafter if deemed effective.
Alabama's waiver applies only to people who turn 21 after it was issued, not to those who already have lost their services.
Under the waiver, Medicaid-eligible young adults who age out of the EPSDT program will be offered private duty nursing, personal care/personal attendant services, medical supplies and appliance, and assistive technology services -- basically the same services they were receiving on the Medicaid program for children.
To qualify for federal approval, the waiver had to be "budget-neutral," meaning it will create monetary savings to offset any increased costs of services.
The waiver program, which is expected to serve up to 30 people turning 21 during its first year, isn't new. A number of other states already provide similar services to Medicaid beneficiaries who age out of the childhood program. After strenuously resisting legislative efforts to expand in-home services to adults, the Alabama Medicaid office changed course this year and submitted the waiver proposal to the federal government.
"We turned this one around pretty quickly -- in about a week," said a spokesperson for the Centers for Medicare and Medicaid Services (CMS), which approves waiver requests from states. She denied that the "unusual speed" had anything to do with Nick Dupree's pending birthday or lawsuit in federal court.
"This kind of waiver is consistent with the policies of this administration and the previous administration. It's part of an effort to make sure that individuals who are able to live in the community with proper supports have the opportunity to do so."
Dupree thinks otherwise.
"It's no coincidence that the waiver suddenly got approved two hours before we had a hearing in federal court," he said. His suit, which charged that Alabama's policies violated the Americans with Disabilities Act, Medicaid law and the Rehabilitation Act, was dismissed Tuesday by the judge because the waiver was passed.
"Alabama Medicaid has been fighting me on this for two years. They held off until the last minute, when I forced them with my lawsuit. Then they told the judge, 'we're doing this even though we don't have to,'" Dupree said.
"I have seen the face of evil and it is Alabama Medicaid."
Nick's Crusade
Although he's relieved that his and his brother's services won't be cut off, Dupree is disappointed that those who already have turned 21 aren't covered.
He has two vent-dependent friends in Mobile with Duchenne muscular dystrophy who lost their services last year, leaving only their physically exhausted parents to provide round-the-clock care. One friend confided that he was worried that his mother was so tired she might not hear him call for help in the night.
"I was very upset that other people who already turned 21 aren't getting anything from this waiver," Dupree says. "It feels wrong."
Dupree started seeking a change two years ago when he realized he was getting close to his birthday cutoff. He began a petition drive and was able to get a bill introduced in the 2002 Alabama legislature. The bill passed out of committee but died at the end of the session --because of state Medicaid opposition, he says
Dupree also wrote letters to countless federal leaders about his situation, and posted their replies on his Web site, www.NicksCrusade.com.
In addition, he became an advocate for federal legislation that would change the way the system operates. The Medicaid Community Attendant Services and Supports Act (MiCASSA) "would take the money Medicaid would use to institutionalize me and use it for home care," he explains. MiCASSA legislation has bloomed and died in Congress for several years, but Dupree expects it will be reintroduced during this session and remains optimistic.
MDA's National Task Force on Public Awareness also supports MiCASSA legislation. William W. Altaffer, a member of the task force steering committee, says Medicaid waivers such as Alabama's, MiCASSA legislation and other legislative efforts such as the Inclusive Home Design Act and the Homebound Clarification Act, all are aimed at the same goal.
"They're all geared to giving people with disabilities the ability to stay in their homes," he said. Although President Bush's New Freedom Initiative sounds as if it also supports that goal, Altaffer is unsure how it will play out, "because of the terrible deficits and war talk."
'Social Darwinism'
Dupree also is worried that "now that they've given us this little waiver, people will go away and there'll be no more media attention on this crisis," he said.
"We need a strong law that will force the states to provide home care over institutional care. If we just go state by state, with people like me fighting in every state, then it will take forever and we just don't have the time. We are in crisis. People are at home with no support, or in nursing homes with no support."
His fight to change Alabama's law has been a real learning experience, he said. "It's really scary that we have social Darwinism in this country, in which we are preventing the weakest members of society from living.
"I'm going to devote the rest of my life to advocacy," he vowed. "I'm going to keep fighting."
