NORD Advocacy Alert  - National Organization for Rare Disorders

October  2008 
Press Release from Senator Hillary Rodham Clinton and Congresswoman Tammy Baldwin (D-WI):
Medically Fragile Children's Act

Senator Hillary Rodham Clinton (D-NY) and Congresswoman Tammy Baldwin (D-WI) have introduced companion legislation allowing states to create an all-inclusive care program for Medicaid-eligible children with the most intensive health care needs.

The Medically Fragile Children's Act (S. 3631/H.R. 7130) would ensure quality care with consistent coordination for children whose severe functional deficits require daily monitoring of their medical conditions. In the current Medicaid environment and in the healthcare system more broadly, care can be disjointed and duplicative, resulting in unnecessary hospitalization and diminished health outcomes, ultimately driving up healthcare costs.

"Families caring for children with the most difficult and complicated medical conditions have more than enough to handle without the added strain of a fragmented healthcare system that doesn't meet their needs. This legislation will take important steps to ensure consistent and coordinated care for those children who need it most, improving their quality of life and reducing costs," Senator Clinton said.

"Access to these programs will help restore respect and dignity to the health care of our most vulnerable youth," said Congresswoman Baldwin. "As I have seen in Wisconsin, with a comprehensive program of care, coordinated by a team of dedicated professionals, these children with special needs can achieve and maintain good health," Baldwin said.

Based on the pioneering model of care developed by a partnership between Palmetto Health of South Carolina, the Medical University of South Carolina, and that state's Medicaid and Social Services programs, this bill will allow states to tailor programs to meet the needs of their most medically complex children. If enacted, this legislation would also support several innovative programs in New York and the successful medical partnership model pioneered by the Medical College of Wisconsin and the Children's Hospital of Wisconsin, which established the medical benefits of care coordination and family support for medically fragile children.

Jim Kaufman, Vice President for Public Policy for the National Association of Children's Hospitals (NACH), added his support by saying, "NACH has recognized the Medically Fragile Children's Program as an innovative partnership between the state of South Carolina and the Medical University of South Carolina Children's Hospital that provides coordinated, high quality and cost-effective health care to children with special health care needs. We commend the introduction of this legislation, which allows other states to implement similar programs incorporating family choice and access to program services up to age 25."

A study of the South Carolina program by the National Association of Children's Hospitals found significant per child savings for Medicaid over a less-coordinated delivery system and a reduction in emergency room visits by 50 percent for children served by the program. In addition, 55 percent of program enrollees exceeded clinical expectations.

In authoring this legislation, Senator Clinton and Congresswoman Baldwin were joined by Reps. Henry Brown (R-SC) and John Spratt (D-SC).

© 2008 NORD, National Organization for Rare Disorders
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