Improving Systems of Care for Children and Youth with Special Healthcare Needs: Epilepsy and Newborn Hearing Screening Programs

Background

The Maternal Child Health Bureau (MCHB) defines children and youth with special health care needs (CYSHCN) as those at “increased risk for chronic physical, developmental, behavioral, or emotional conditions that require health and related services of a type or amount beyond that required of children generally.”  More than 12 million U.S. children meet this definition.
To address the health care needs of mothers and children, Congress created Title V of the Social Security Act in 1935.  This legislation mandated that states support the health and well-being of CYSHCN.  Changes in Federal guidelines implemented through the Omnibus Budget Reconciliation Act of 1989 require state Title V programs to "provide and to promote family-centered, community-based, culturally-competent, coordinated care” for CYSHCN and to "facilitate the development of community-based systems of services for CYSHCN and their families." The Division of Services for Children with Special Health Care Needs of the Maternal and Child Health Bureau has the primary responsibility for articulating this legislation, whose intent is also reinforced through President George W. Bush’s New Freedom Initiative.

According to Perrin et al., a system of services for children and youth, including those with special health care needs, is a family-centered coordinated network of community-based services designed to promote the healthy development and well being of children and their families.  A well-functioning system of services will coordinate and integrate the full range of needed child and family services, among them health care, education, and social services, with the goal of optimizing outcomes for the children and families it serves.  Viewed from the family’s perspective, a system of services, in order to be responsive to the needs of CYSHCN, should provide a seamless and transparent spectrum of community-based services that are accessible, flexible, responsive, and targeted to address their child’s mental, physical, emotional, and social needs. *(Perrin J, Bloom S, Homer CJ, et al. in press)
MCHB has articulated six components of a comprehensive plan to achieve such a community based system of care:

  1. Family/professional partnership at all levels of decision-making.
  2. Access to comprehensive health and related services through the medical home.
  3. Early and continuous screening, evaluation and diagnosis.
  4. Adequate public and/or private financing of needed services.
  5. Organization of community services so that families can use them easily.
  6. Successful transition to all aspects of adult health care, work, and independence.
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