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Name: Nicholas Dupree
Age/birth date: 19. He was born Feb. 23, 1982, in Morgantown, W.Va.
Home: Mobile, Ala.
Family: Nick lives at home with his mother, Ruth Belasco, his 17-year-old brother, Jamie, and his grandmother, Lou Folk.
Disability: Nick and his brother have an unknown form of muscular dystrophy that doctors have been unable to specifically categorize. Nick began to need skilled nursing care after a 1991 operation went poorly. Today, he uses a ventilator to breathe, his fingers to use a computer and a power wheelchair for mobility.
Education: Nick is a sophomore attending Mobile's Spring Hill College. He began going to school there at age 16 because the Mobile Public School System did not have adequate academic programs or the physical accessibility he needed. Dupree scored a 32 out of 36 on the ACT, the college entrance exam he had to take to be accepted at Spring Hill. He is majoring in professional writing with a minor in communication arts. His career dream is to get a few years of experience writing for the Mobile Registrar newspaper, then relocate to a more disability friendly city.
Hobbies: Nick enjoys playing computer games and watching New Orleans Saints play football.
Role models: Nick says he does not really model himself after anyone. He likes to "go against the crowd." Still, he says certain people, including his mother and grandmother, have influenced him.
Greatest accomplishment: At 19, Nick says he is still reaching for more. He will consider it monumental if he is able to help get MiCASSA, legislation to offer skilled home nursing, passed.

Losing his life as he knows it
Nicholas Dupree will turn 21 on Feb. 23, 2003. The day when he officially enters adulthood would ordinarily be awaited with great expectation. He is thoughtful, articulate and intelligent. It should be a time for celebrating his past and his promise. Instead, Nick will spend the next two years crusading for MiCASSA legislation that will enable him to have the skilled nursing care he needs to live at home.

Nick has an unknown form of muscular dystrophy that makes it necessary for him to use a power wheelchair and breathe with a ventilator. Medicaid covers the daily expense of 16 hours of nursing. However, when he turns 21, he will no longer meet Medicaid's age requirement.

"I'm not sure what we would do, but it'd be bad," Nick said. "Mom could quit her job to stay home and take care of me, getting her income from welfare. She would not be able to sleep, and having a critically fatigued caregiver would put me in jeopardy. Alabama Medicaid suggests I be placed in a nursing home out of state. Either way, I will be taken away from Spring Hill College and my normal life and I don't want that."

Searching for a solution
Nick not only wants to remain in his home, but he is willing to make whatever effort he can to turn that goal into a reality for himself and others like him. Sometimes he worries because he knows examples of bills that have taken six years to pass. Mostly, he is optimistic. "I will fight until I get a solution -- no matter what," he said.

The "fight" will not be a brawny battle; it will be the implementation of a calculated plan he has outlined on his Web site. It started with a letter campaign, in part because Nick's grandmother repeatedly told him what a good writer he was. Then he carried the idea a step further and decided to post politicians' responses on the Internet.

Stating his case
Nick's case for passing the proposed legislation is simple: "With some assistance from MiCASSA, families with disabled children can work more, pay more taxes and buy more goods, become assets, not detriments to government resources. MiCASSA is remarkable because it can accomplish all this without creating a new government program with a lot of new spending. It only shifts Medicaid spending from nursing homes to homes."

As straightforward as his reasoning may be, Nick's greatest surprise about his situation has been that others are skeptical he will get support. When he posted a message on an Internet message board about his crusade, one person wrote, "Welcome to the real world. People with money live; people without money die. Don't rely on the government to save you."

"I was so flabbergasted by such a response, I saved it," Nick said.

Ruth Belasco, Nick's mother, points out, "I am not a wealthy person, but last year I paid over $14,000 for nursing assistance. That's even with the Medicaid coverage we have currently."

Nick explains why having the medical technology to help people live is only fulfilling some of the need. "You can't just fix someone's tire but leave them with no gas to sit on the road and rust," he said. "MiCASSA can provide that extra help, the gas that will allow some people to excel on the road of life."

Focusing on the positive
Nick devotes time to helping other teens with disabilities excel and deal with challenges they face by hosting an online chat group called the Disabled Teens Support Group. When he had an operation nearly 10 years ago, he lost the limited use of his limbs that he had. From the experience, he learned "the human psyche can pretty much adapt to anything if given time."

His mom hopes the politicians that her son is approaching realize "Nick is a valuable member of society with a lot of contributions to make. I imagine him becoming a wonderful writer, with great humor and sensitivity. He is seeking a way to remain independent and as healthy as possible while being as little of a burden as possible."

Regarding his disability, Nick said, "Now I just don't think about it much. I go about my daily life. When I dream, I'm back to my state before the surgery, so I guess that is my 'psychic image.'" What he tries to tell his peers is they do not need to sugar coat their disability; they need to deal with it in a positive way. "I automatically concentrate on things I can do, not the things I can't," he said.