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A Bit of Aid for Ailing Kids

June 12, 2004

Let's face it: The nation's healthcare system will stay broken until after the presidential election. You can take that to the bank. There is one small and possibly solitary exception: the Dylan Lee James Family Opportunity Act, a step that Sens. Edward M. Kennedy (D-Mass.) and Charles E. Grassley (R-Iowa) have been pressing Congress to take since they introduced the modest bill four years ago. S 622, which passed the Senate in May, would let parents of seriously disabled children go to work without losing their Medicaid health insurance. Parents would pay for coverage on a sliding scale.

The measure will not comfort the parents of Dylan, who died in 2000 at age 6 after a struggle with a severe heart defect and Down syndrome. Months before his death, his parents received a letter from Medicaid declaring that Dylan had become ineligible for health benefits because his stepfather, a plumber, had received a raise that brought his salary to $33,000, over the limit for aid.

In a survey of 20 states last year, 64% of parents whose children were afflicted with cerebral palsy, autism and other chronic ailments reported they were turning down jobs, raises and overtime, depriving the rest of the family so a child could keep receiving treatment or drugs through Medicaid.

Even the fate of the modest Kennedy/Grassley reform is uncertain, because a companion House bill is stalled in the House Energy and Commerce Committee. Though Kennedy and Grassley believe that most House members would support the bill, some Republicans want its estimated cost ($7 billion over the next nine years) to be funded by cutbacks elsewhere in Medicaid.

A majority of state governors of both parties, however, think that Medicaid is underfunded. Clearly, threats loom; one pending House measure calls for a $2.5-billion reduction in Medicaid in fiscal year 2005 alone.

The House version of S 622, unlike some other parts of Medicaid, has tight controls to prevent fiscal abuse, including a high standard for defining disability. To qualify, a child must have a "specific, chronic and limiting" disability that results in "marked and severe functional limitations" and is either terminal or long-lasting.

The act is no solution to the larger problem of the uninsured, which in a perfect world would be solved by extending health coverage to all. But, as mentioned earlier, it's an election year.


To Take Action: E-mail House Majority Leader J. Dennis Hastert (R-Ill.) or House Energy and Commerce Committee Chairman Joe Barton (R-Texas) by visiting

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