Latest News on Nick's Crusade

2/10/2002

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 me.

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 their front page photo of me by clicking here.

Thank you for reading this, and please help spread the word by forwarding this message!

Nick

NicksCrusade.com

"Audemus Jura Nostra Defendere," -- We Dare Defend Our Rights (Alabama's State Motto)

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02/07/02

The Mobile Register

Nick States His Case

By SALLIE OWEN
Capital Bureau

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 governments.

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 testimony.

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 officials.

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 dispute.

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 federal regulations.

"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."