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Parents with disabled kids should not be penalized



Published: Fri, March 28, 2003 @ 12:00 a.m.



Los Angeles Times: The United States is not supposed to be a place that lets kids -- especially disabled kids -- suffer because of their parents' deeds -- especially if the deed in question is working harder or leaving welfare for a job. That, however, is exactly what the nation's current Medicaid system does.

Many families of disabled children that receive federal disability benefits under Supplemental Security Income, or SSI, want to be more productive and independent. But if they increase their incomes, their children lose health-care coverage under Medicaid.

As the nation tries to showcase its ideals to the world, now is a good time for Congress to fix the system by supporting the proposed Dylan Lee James Family Opportunity Act, which Sens. Charles E. Grassley, R-Iowa, and Edward M. Kennedy, D-Mass., introduced March 13. The bill would allow the parents of disabled children to keep their Medicaid insurance so they can enter the workforce without losing lifesaving medical benefits.

Sad tale

The legislation is named after a 6-year-old boy from Mesquite, Texas, who died in 2000 after a struggle with 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.

Two-thirds of U.S. senators have co-sponsored the bill. Yet, for each of the last three years, Senate leaders have allowed similar bills with equally strong backing to die, in large part because Sens. Trent Lott, R-Miss., and Don Nickles, R-Okla., have rallied opposition.

To win support from Senate skeptics, Grassley and Kennedy have scaled back the bill substantially since first introducing it in 2000. Like the original legislation, this bill would allow states to offer Medicaid coverage on a sliding scale for families with incomes well above the federal poverty level. To keep costs down, this year's version proposes an income ceiling of about $45,000 for a family of four and limits the benefit to children up to age 18.




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