News on Nick's Crusade
From: Nicholas Dupree
To all of my supporters:
First I got my bill introduced. Without experience, or the ability to move
or breathe, I advocated and in less than one year got a bill to rectify the
situation of Medicaid cutting off home care at age 21 introduced in the
Alabama State Senate. I'm starting with this statement to let everyone know
that public advocacy works! No corner of the country should not know of my
story, not know that one man CAN make a difference (i.e., please forward
this message to encourage more advocacy).
Now, for the reason I'm writing everyone this time. Wednesday my Crusade had
another great success. The bill I've advocated for, SB 113, had its public
hearing before the Alabama State Senate Health Committee in Montgomery. We
made the three hour trip and I was glad to speak to the committee.
Although only five out of eleven the Senators on the committee showed up for
the meeting, meaning there was no quorum and the bill could not be voted on,
I am happy I went as my testimony was very well received by the Senators
that were present, especially Senator Dixon, who stopped further proceedings
after I had finished and said "young man, you have an amazing command of the
English language" and asked Mom who had taught me. I told him I went to
Spring Hill College.
It was also nice to meet Senator George Callahan for the first time in
Montgomery. He is my strongest ally (sponsor of SB 113) and a genuinely
good man. He said once the bill goes to the floor he will introduce a
resolution to honor me and name the bill the "Nick Dupree Adult Care Act."
The resolution will then be framed and presented to me.
After this hearing I am confident the bill will pass the legislature but I'm
not at all confident about the bill ever being implemented given the strong
opposition. Mary Finch, legislative liaison for the Alabama Medicaid Agency,
testified AGAINST the bill Wednesday. She argued SB 113 was illegal under
federal Medicaid regulations because it would discriminate against the group
of people not eligible before 21 and only benefit another group (people with
disabilities who were eligible for home care before 21). While other
teenagers are out dating and partying, I'm reading about Medicaid
regulations. It is true SB 113 would violate federal regs, unless they
create a new waiver under 1915c to pick up me and others. I don't believe a
change in federal rules which Callahan has mentioned (and is addressed in
the following article) is feasible. Creating a new waiver just makes
sense. But Mary Finch said the federal government won't approve this as a
waiver. Quite frankly I think that's nonsense. I see no possible reason
for them to reject such a limited waiver when they approve much larger
waivers for other states every day. I believe Alabama Medicaid is grasping
at anything, saying anything possible because they don't want to change,
don't want to take on another burden when they're currently overburdened
financially (and with a new $9 BILLION Medicaid cut planned by the Bush
administration it may only get worse). It is clear Medicaid will try
anything to stop this bill. Particularly troubling is the implication that
Medicaid will tie up SB 113 in the courts if it passes. That really worries
One comfort was that the committee guaranteed me that the bill will it make
it to the floor and rejected Mary Finch's arguments and also subtly told her
it would pass. It seemed they didn't buy her arguments any more than I did.
The local NBC affiliate, WPMI-TV 15, covered my Montgomery adventure and the
Mobile Register ran a great, large, front-page story the next day. You can
read the full text of the Register's story below my signature, and see
page photo of me by clicking here.
Thank you for reading this, and please help spread the word by forwarding
"Audemus Jura Nostra Defendere," -- We Dare Defend Our Rights (Alabama's
The Mobile Register
Nick States His Case
By SALLIE OWEN
MONTGOMERY -- Nineteen-year-old quadriplegic Nick Dupree of Mobile traveled
to Montgomery on Wednesday to tell legislators why Medicaid in Alabama
should still pay for in-home nursing care after he turns 21.
But state Medicaid officials said the proposed bill to continue benefits for
Dupree and others won't work, and there's no money for it.
"You're in between a rock and a hard place," said Dupree, who will turn 21
in a year and two weeks. "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."
Congress created Medicaid in 1965 to provide health care to low-income
individuals. The program is jointly financed by the state and federal
Dupree's motorized wheelchair, with a rear mounted ventilator connected to
him by translucent tubing, dominated the small meeting room inside the
Alabama State House on Wednesday, as senators intently listened to his
The committee chairman, George Clay, D-Tuskegee, said senators were
sympathetic to his pleas, but there were not enough members present to vote
on the bill.
Dupree and his younger brother, Jamie, have a rare form of muscular
dystrophy, a group of hereditary diseases characterized by progressive
weakening of muscles. According to his Web site,
nickscrusade.com, Dupree used a
manual wheelchair until 1991 when he developed a severe infection following
back surgery. Since 1994, he has used a respirator to breathe.
Sen. George Callahan, R-Mobile, has introduced a bill to make Medicaid
continue in-home nursing services to people who qualified for in-home
nursing before they turned 21, when they reach adulthood in eyes of Medicaid
Dupree and his younger brother qualify for 16 hours a day of Medicaid-paid
in-home nursing, according to their mother, Ruth Belasco. Belasco, who is
divorced and teaches at Spring Hill College, pays a total of $364 a week for
additional nursing help beyond the care paid for by Medicaid. She said the
ventilators require frequent upkeep -- removing water that collects in the
tubing, monitoring the power supply, suctioning out the secretions that
collect in her sons' lungs.
But Alabama Medicaid policy adviser Mary Finch said that the legislation
would violate federal regulations. She said it would treat one group --
adults who qualified for in-home nursing as children -- differently from
those who didn't need such care until after the age of 21.
"We're never opposed to expanding services," Finch said, "as long as it's
within the law, and it's funded."
Special situations can be handled through a waiver process, where the state
Medicaid agency proves to federal officials that, for example, it would be
cheaper to give Dupree in-home nursing than put him in a nursing home. If a
waiver is granted, the federal government picks up 70 percent of the cost,
with the state paying the rest.
Finch said federal officials told the state that they probably could not
approve a waiver for Dupree. She said nursing home care costs between
$32,000 and $35,000 per year per person, compared with between $40,000 and
$45,000 for in-home nursing, depending on the hours of care needed per day.
She said that if Alabama created a benefit of in-home nursing for adults, it
would cost the state between $27 million and $78 million a year.
Alabama's Medicaid agency is feuding with its federal overseers for
allegedly using creative accounting to collect more federal dollars than the
state is entitled to receive.
Finch said that if the Legislature finds the millions it would take to
provide in-home nursing for people like Dupree, that would undercut
Alabama's defense with the federal officials. But, she said, the state
agency would still object to Callahan's bill regardless of the ongoing
Dupree, who is studying professional writing at Spring Hill College,
anticipated Medicaid saying it couldn't afford to help him. He told the
committee, "Medicaid will say they can't afford it, but they can't afford
not to. How much is a human life worth?"
He said that without a change in Alabama Medicaid's policy he would likely
have to move to an out-of-state nursing home, saying that none of the
nursing homes in Alabama provide the level of care he needs.
After the committee meeting, Dupree said he didn't expect the conflict with
"My feeling is we would have a better chance of winning if we amend the bill
than if we go to war with the federal government," Dupree said.
Callahan tried to reassure Dupree, saying that the bill was working because
it would "bring the conflict into focus." When Dupree still looked worried,
his mother told him, "Of course, you have a lot more riding on it."