Article by By Pam Adams | GateHouse News Service
MARQUETTE HEIGHTS — [Sept 23, 2012] The little boy jumping in the middle of the bed, screeching out his favorite song, “Play that Funky Music White Boy,” has congenital central hypoventilation syndrome, a gene mutation that causes his body to forget to breathe.
“There’s maybe 600 known cases worldwide,” said his father, Bill Thompson.
The rare disease is also the reason 5-year-old Alex has had a tube sprouting from his windpipe since he was 6 weeks old and a bedroom that doubles as a hospital room.
But right now, it is not the rarity of Alex’s disease that concerns his parents. It’s Illinois’ effort to reduce wide-ranging Medicaid costs, his father says, at the expense of children like Alex who rely on medical technology and round-the-clock nursing care to live at home.
Bill and Holly Thompson are among some 500 families throughout the state who depend on what’s called the MFTD waiver, or the Medically Fragile and Technology-Dependent Waiver program.
With the waiver, their children are eligible for Medicaid regardless of parental income. Without it, parents can’t afford the round-the-clock nursing care — at an average cost of $188,000 a year — their children require to avoid institutionalization.
Fighting the changes
MFTD-waiver families have popped up as one of the most vociferous grass-roots groups fighting specific changes in the state’s Medicaid reform package.
So far, families have played a role in blocking state plans to shift more of the costs to families, impose income eligibility caps and change standard-of-care definitions. They’ve cornered Julie Hamos, head of the state Department of Healthcare and Family Services, at public forums and filed a lawsuit to stop the changes.
The federal Centers for Medicare and Medicaid Services stepped in, asking state officials to request a deadline extension so federal officials would have time to review the changes. An initial Sept. 1 deadline has been extended 90 days.
“About 100 families are on Facebook every night talking about strategies (and) which legislators we’ve harassed lately,” Thompson said.
Harassing legislators is nothing compared to sacrifices the Thompsons have made since Alex was born.
His tracheostomy tube is his airway, and he practically began life on one in a neonatal intensive-care unit. He was on a ventilator to keep him breathing his first few years. He’s still on one at night. His parents rely on private nurses at night and when Alex goes to school.
Both parents learned to suction the tube to prevent clogging and replace it if it comes out. Their 15-year-old daughter, Allie, also learned to care for her brother. If Alex pulls the tube from his neck, they’ve got 10 seconds to get it back in.
Concerted effort
When Holly Thompson’s maternity leave was up, Bill Thompson, 48, quit his job for a year. “I didn’t trust the nurse,” he said.
When Holly, 38, was laid off, they held onto $700-a-month COBRA payments. They both eventually took lower-paying jobs, mainly so they could be with Alex. Even so, they saved for Allie’s college education, though private nurses became part of their routine.
“I never dreamed there would be a cost I couldn’t take care of with my insurance or money I had saved,” Holly Thompson said. “The waiver program was a Godsend for us.”
If the MFTD waiver took effect as state officials intended, the Thompsons would pay 5 percent of their income, about $386 a month, to maintain the nurses.
But to the MFTD families, the income cap and changes in care standards are more worrisome than sharing costs. Families that earn above 500 percent of the official federal poverty level would not be eligible for the waiver. That’s about $95,000 for a family of three.
“Some people might say that’s a pretty good income,” said Larry Joseph, director of the fiscal policy center at Chicago-based Voices for Illinois Children. “But not when nursing costs average $188,000 a year.”
Families no longer eligible for the waiver would face huge out-of-pocket expenses with no transition plan. Some say they’d have to quit their jobs, work part time or divorce to make sure their children get the proper care. Or their children might be forced to move into a nursing home, which would cost Medicaid three times as much as the waiver program.
The Thompsons take Alex’s boisterous rendition of his favorite song in stride. Bill Thompson joins him on a few bars.
“Where he is today is because of concerted effort,” Bill Thompson said.
“We worked with him, and the nurses worked with him also. There’s no way they could do that in a hospital or a nursing home.”
http://www.rrstar.com/healthyrockford/x887150136/Program-for-medically-fragile-kids-holds-on-despite-cuts-threat?zc_p=1
MARQUETTE HEIGHTS — [Sept 23, 2012] The little boy jumping in the middle of the bed, screeching out his favorite song, “Play that Funky Music White Boy,” has congenital central hypoventilation syndrome, a gene mutation that causes his body to forget to breathe.
“There’s maybe 600 known cases worldwide,” said his father, Bill Thompson.
The rare disease is also the reason 5-year-old Alex has had a tube sprouting from his windpipe since he was 6 weeks old and a bedroom that doubles as a hospital room.
But right now, it is not the rarity of Alex’s disease that concerns his parents. It’s Illinois’ effort to reduce wide-ranging Medicaid costs, his father says, at the expense of children like Alex who rely on medical technology and round-the-clock nursing care to live at home.
Bill and Holly Thompson are among some 500 families throughout the state who depend on what’s called the MFTD waiver, or the Medically Fragile and Technology-Dependent Waiver program.
With the waiver, their children are eligible for Medicaid regardless of parental income. Without it, parents can’t afford the round-the-clock nursing care — at an average cost of $188,000 a year — their children require to avoid institutionalization.
Fighting the changes
MFTD-waiver families have popped up as one of the most vociferous grass-roots groups fighting specific changes in the state’s Medicaid reform package.
So far, families have played a role in blocking state plans to shift more of the costs to families, impose income eligibility caps and change standard-of-care definitions. They’ve cornered Julie Hamos, head of the state Department of Healthcare and Family Services, at public forums and filed a lawsuit to stop the changes.
The federal Centers for Medicare and Medicaid Services stepped in, asking state officials to request a deadline extension so federal officials would have time to review the changes. An initial Sept. 1 deadline has been extended 90 days.
“About 100 families are on Facebook every night talking about strategies (and) which legislators we’ve harassed lately,” Thompson said.
Harassing legislators is nothing compared to sacrifices the Thompsons have made since Alex was born.
His tracheostomy tube is his airway, and he practically began life on one in a neonatal intensive-care unit. He was on a ventilator to keep him breathing his first few years. He’s still on one at night. His parents rely on private nurses at night and when Alex goes to school.
Both parents learned to suction the tube to prevent clogging and replace it if it comes out. Their 15-year-old daughter, Allie, also learned to care for her brother. If Alex pulls the tube from his neck, they’ve got 10 seconds to get it back in.
Concerted effort
When Holly Thompson’s maternity leave was up, Bill Thompson, 48, quit his job for a year. “I didn’t trust the nurse,” he said.
When Holly, 38, was laid off, they held onto $700-a-month COBRA payments. They both eventually took lower-paying jobs, mainly so they could be with Alex. Even so, they saved for Allie’s college education, though private nurses became part of their routine.
“I never dreamed there would be a cost I couldn’t take care of with my insurance or money I had saved,” Holly Thompson said. “The waiver program was a Godsend for us.”
If the MFTD waiver took effect as state officials intended, the Thompsons would pay 5 percent of their income, about $386 a month, to maintain the nurses.
But to the MFTD families, the income cap and changes in care standards are more worrisome than sharing costs. Families that earn above 500 percent of the official federal poverty level would not be eligible for the waiver. That’s about $95,000 for a family of three.
“Some people might say that’s a pretty good income,” said Larry Joseph, director of the fiscal policy center at Chicago-based Voices for Illinois Children. “But not when nursing costs average $188,000 a year.”
Families no longer eligible for the waiver would face huge out-of-pocket expenses with no transition plan. Some say they’d have to quit their jobs, work part time or divorce to make sure their children get the proper care. Or their children might be forced to move into a nursing home, which would cost Medicaid three times as much as the waiver program.
The Thompsons take Alex’s boisterous rendition of his favorite song in stride. Bill Thompson joins him on a few bars.
“Where he is today is because of concerted effort,” Bill Thompson said.
“We worked with him, and the nurses worked with him also. There’s no way they could do that in a hospital or a nursing home.”
http://www.rrstar.com/healthyrockford/x887150136/Program-for-medically-fragile-kids-holds-on-despite-cuts-threat?zc_p=1
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