One in three children with special health care needs relies on Medicaid or the Children’s Health Insurance Plan (CHIP), according to a report released today by Georgetown University Health Policy Institute Center for Children and Families.

The research project, conducted in partnership with Family Voices, found that children and youth with special health care needs are more likely to be covered by Medicaid than other children. Families raising children with serious conditions such as autism, cancer, cerebral palsy, complex genetic disorders and epilepsy rely on Medicaid’s comprehensive benefit and cost-sharing protections because of their relatively extensive health care needs. Overall, Medicaid is the largest single payer of health care services for these children and many of their families would face financial ruin without its help.

“Medicaid is the most important source of health care coverage for children with special health care needs and proposals to deeply cut Medicaid would be particularly devastating to them,” said Joan Alker, co-director of the Georgetown University health policy research center. “The stakes of this debate are high for all children who rely on Medicaid, but the consequences of waiting lists, benefit cuts, and higher cost-sharing will be far more damaging to children and youth with special health care needs.”

Families from Indiana, Utah, Arkansas, Florida, Illinois and Texas were featured in the report. The Rodgers family of Lebanon, Indiana is raising two children, Laura and Matthew, both of whom have been diagnosed with mitochondrial disorder. Laura, age 11, provided researchers with the following insights into the importance of Medicaid for children like her:

“Medicaid is really important to me and other kids. My parents have health insurance for our family from their jobs but it is not enough to cover the cost and needs that come with mitochondrial disease that my brother and I both have. Without Medicaid, my family would have  declared bankruptcy years ago. I wouldn’t have my scooter to get around and I wouldn’t be able to live such a productive, independent life. I have big plans for my future and Medicaid is helping me achieve those dreams. ”

Many of the families interviewed have private health insurance but need Medicaid to help them meet the costs of caring for their child in their home rather than placing them in more costly institutional care. Others needed help paying for expensive life-saving medicine or medical bill that were not covered by their private health insurance plans. Even with Medicaid’s help, many of these families make great personal and financial sacrifices in order to care for their children and youth with special health care needs.

“I cannot imagine going one single moment through Emma’s life without Medicaid as her secondary insurance,” said Natilie Wooldridge of Camden, Arkansas whose daughter was born with spina bifida. “At times her medical and pharmaceutical bills could easily put our family of six on the street. It’s hard enough to raise a family in this day and age, but imagine what it’s like to live with children affected by life-long special healthcare needs.”

The report was released at a time when pressure is mounting on federal negotiators to trim the deficit by cutting Medicaid, Medicare and Social Security.

“Our nation’s leaders are facing a watershed moment as they try to build a consensus on how to best address the long-term deficit,” said Joan Alker, co-director of Georgetown University Health Policy Institute Center for Children and Families. “The path our government takes at this pivotal point in history will be a defining moment for our society and no other group has more at stake in this debate than children and youth with special health care needs.”

A copy of the report is available at Georgetown University Health Policy Institute Center for Children and Families website (http://ccf.georgetown.edu/).

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