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

October 2007 – September 2010

The overall aim of this NICHQ-led initiative is to improve the health and well being of Children and Youth with Special Health Care Needs (CYSHCN) and their families through building the capacity of state Title V programs—in concert with other state based partners—to create and sustain effective community based systems of care for this population. The initiative will focus on transforming the health care component of the system of care by enabling the spread of the medical home and by strengthening co-management relationships between the medical home and specialty care (vertical coordination).

The initiative will accomplish these aims through a structured set of activities in three distinct phases:

  • First, NICHQ will undertake a planned innovation program to identify successful state level strategies of enhancing health care and other community services, synthesize a new framework to be applied in the subsequent collaborative process, and assess its validity through expert review and limited field testing.
  • Second, NICHQ will work with state and clinical teams, focusing on two categorical programs-- Project Access: Epilepsy and the Newborn Hearing Screening Program—while working with State Title V Leadership on applying the framework from the innovation program. States will use the two categorical programs as real world opportunities to apply this new approach. This second phase will entail the use of a change model—the Model for Improvement—and a learning model—the Breakthrough Series collaborative—that have demonstrated effectiveness in four previous projects NICHQ has undertaken with the Maternal and Child Health Bureau. To achieve widespread exposure to these approaches, NICHQ will conduct two consecutive Breakthrough Series collaboratives, after reviewing the experience with the first and making appropriate modifications.  NICHQ will engage parents deeply in this work and embed strategies to measure and address disparities in care and outcomes throughout
  • In the third phase, NICHQ, working in concert with the Division of Services for Children with Special Health Care Needs, will reflect on the experience of the initiative, synthesize key lessons, make recommendations for future action, and prepare appropriate communication materials to further those recommendations. These efforts will contribute to the development by the Division of a comprehensive strategy for systems improvements for all of its programs.

Learn more about this project:

Background
Participating States
Project Schedule
Project Faculty
Project Partners
Newborn hearing screening tools

For additional information about this project, please contact Aaron Kirby at akirby@nichq.org.

*Perrin J, Romm D, Bloom S, Homer C, Kuhlthau K, Cooley C, Duncan P, Roberts R, Sloyer P, Wells N, Newacheck P.  A Family-Centered Community-Based System of Services for Children and Youth with Special Health Care Needs.  Archives of Pediatrics and Adolescent Medicine.  In Press.

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