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

October 2007 – June 2011

The overall aim of this NICHQ-led initiative was 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 focused 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 accomplished these aims through a structured set of activities in three distinct phases:

  • First, NICHQ undertook 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 worked 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 used the two categorical programs as real world opportunities to apply this new approach. This second phase entailed the use of a change model—the Model for Improvement—and a learning model—the Breakthrough Series collaborative—that demonstrated effectiveness in four previous projects NICHQ has undertaken with the Maternal and Child Health Bureau. To achieve widespread exposure to these approaches, NICHQ conducted two consecutive Breakthrough Series collaboratives, after reviewing the experience with the first and making appropriate modifications. NICHQ will engaged parents deeply in this work and embedded 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, reflected on the experience of the initiative, synthesized key lessons, made recommendations for future action, and prepared appropriate communication materials to further those recommendations. These efforts contributed to the development by the Division of a comprehensive strategy for systems improvements for all of its programs.

The final project report, "Improving Systems, Changing Futures: Engaging Title V, Families and Clinical Partners in Improving the System of Care for Children and Youth with Special Healthcare Needs" [PDF], summarizes the work completed throughout all three phases of the project.

Learn more about this project:

Participating States
Project Schedule
Project Faculty
Project Partners
ISC Toolkits for Providers and Families of Children and Youth with Special Healthcare Needs

*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. Link.

The Improving Systems of Care for Children and Youth with Special Healthcare Needs project was funded by the Maternal and Child Health Bureau (MCHB) Division of Services for Children with Special Health Needs at the Health Resources and Services Administration (HRSA) including cooperative agreement #U23MCO3889 and the following contracts: HHSH240200735007C, HHSH240200535016C and HHSH250201000021C.


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