Spread of Quality Improvement for Children and Youth with Special Healthcare Needs
A project to improve the health and well-being of children and youth with special health care needs 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.
October 2007 to June 2011
- 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.
- Funder: The project was funded by the US Department of Health and Human Services Administration, Maternal and Child Health Bureau.
- Our Role: Led a planned innovation program to identify successful state level strategies of enhancing healthcare and other community services, synthesized a new framework for subsequent collaborative processes, 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.
Rare Disease Day Social Media Toolkit
Use this social media toolkit with infographics, images and sample posts sharing key statistics and facts that illustrate the impact rare diseases have on over 25 million Americans. Share the toolkit with your colleagues and use it yourself on Rare Disease Day on Feb. 29, 2020
Improving Follow-Up After Newborn Hearing Screening
This action kit is designed to reduce loss to follow-up for newborns after their initial hearing screening. The kit offers solutions for engaging families and enrolling newborns in early intervention services.
Improving Systems: Changing Futures
In the Spread of Quality Improvement for Children and Youth with Special Healthcare Needs: An integrated Systems Strategy for Building the Title V Infrastructure project, NICHQ was tasked with improving the health and well being of children and youth with special healthcare needs and their families through building the capacity of state Title V programs to create and sustain effective community-based systems of care for this population. This report documents NICHQ's learnings and impact.
Enhancing Communications: Improving Care for Infants with Hearing Loss
This report summarizes NICHQ's learnings and impact from the Improving Follow-Up to Newborn Hearing Screening by Working Through the Medical Home project, which sought to improve the long term outcomes for children with hearing loss by strengthening follow up to newborn hearing screenings.
Did You Know?
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 Index 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.