Bipartisan legislation designed to provide greater access to Medicaid coverage for disabled children was the subject of a July 12 hearing held by the Senate Budget Committee. The Family Opportunity Act (S. 2274) is sponsored by Sens. Chuck Grassley (R-IA) and Edward Kennedy (D-MA). Reps. Pete Sessions (R-TX) and Henry Waxman (D-CA) have cosponsored a companion bill (H.R. 4825) in the House.
Currently, 12.6 million children under the age of 18 have special health care needs. However, an estimated 11 percent of these children are uninsured and 13 percent remain underinsured for their health care needs. Their special needs include care that is often not covered under private health insurance plans. At the same time, out-of-pocket costs to cover such care are very expensive.
The Medicaid program provides many of the special services these children need. While most children with special needs qualify for health care coverage under Medicaid, a parent who receives a promotion may find that his/her income then exceeds the Medicaid income eligibility threshold. Several witnesses testified that in order to continue to provide disabled children with quality care, family members had to strictly limit their income by refusing promotions, overtime, and pay raises, to continue to qualify for Medicaid. Gordon Fay, the father of a girl with a rare chromosome disorder, earned a promotion in the United States Air Force. However, he testified that “the promotion will take me above the income threshold. The extra money that I would gain…would not come close to offsetting the costs of necessities for Lauren.”
Other “options” for families include giving up custody of their child to maintain access to Medicaid-covered services and declaring bankruptcy due to extraordinary medical expenses. Additionally, while some families earn too much to qualify for Medicaid, their incomes are not adequate enough to pay for private insurance.
Rep. Sessions, the father of a son with Down’s Syndrome, highlighted the catch-22 that such income qualifications create, explaining that “64 percent of families with disabled children report that they are turning down jobs, turning down overtime, and are unable to earn enough money to adequately provide for their family—just so their child can access Medicaid.”
S. 2274 would address this issue by allowing states to offer an affordable Medicaid buy-in to families of children with disabilities. The bill also would enable states to provide a Medicaid buy-in for potentially disabled children, those who will become severely disabled if they do not receive early intervention health services. Additionally, the bill would establish Family-to-Family Information Centers in each state to assist families in finding access to necessary resources. Under the legislation, families would qualify for Medicaid if their incomes do not exceed 600 percent of the official poverty line. However, the bill would provide flexibility to states to make a determination of eligibility for families that exceed the 600 percent cutoff. Premiums would be determined on a sliding scale based on income, but the premiums would not exceed 7.5 percent of a family’s income. Sen. Grassley stated that these changes would encourage parents to work and pursue higher paying jobs, which would then allow them to provide a better quality of life for their families as well as contribute to a healthy economy. Sen. Kennedy pledged that the bipartisan legislation would “put in place a safety net, so that disability need not end the American dream for any child or any family.” Several families of disabled children testified that easing the economic burden would remove one of the obstacles they face in caring for their children. Mr. Fay said, “By supporting this act, you will relieve that one stress of medical care for the thousands of families with situations like ours. And even though it is only one stress factor that is relieved, believe me, it will make a difference in our lives.”
