Joseph Rugg's Health Law Blog

MARQUETTE HEIGHTS — 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.

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.

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.

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.

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