Spread of Quality Improvement for Children and Youth with Special Healthcare Needs

Status: Complete

WHAT: A project 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.

WHO: The project engaged 22 teams from 17 states. An additional 18 state teams participated in an abbreviated form of training resulting from this project called Jump Start.

WHEN: October 2007 to June 2011

FUNDER: The project was funded by the US Department of Health and Human Services Administration, Maternal and Child Health Bureau.

NICHQ'S ROLE: Led a planned innovation program to identify successful state level strategies of enhancing healthcare and other community services, synthesized a new framework to be applied in the subsequent collaborative process, and assessed its validity through expert review and field testing. Facilitated a Breakthrough Series learning collaborative to apply the framework of the innovation program to two topic areas— Epilepsy and the Newborn Hearing Screening.

Lessons Learned

Almost one in five children in the United States has special healthcare needs; however, only 18 percent of those children receive services in a high-quality care system. Improving the quality of care in early life, especially for the most vulnerable children, takes on additional urgency because of our increased understanding of the importance of the early years for health over the entire lifespan.

Read more in the final project report, Improving Systems, Changing Futures.

Measure Development

Through this project, NICHQ developed the Title V Index to provide a framework for Title V programs to reflect on their own capacity to make and sustain system change. The index is modeled after the Medical Home IndexExternal Link and consists of six care domains: 1) overall leadership; 2) partnerships across public and private sectors (including families); 3) quality improvement; 4) use of available resources; 5) coordination of service delivery; and 6) data infrastructure.

Learn more about NICHQ's expertise in Measure Development.