1. Maternal and Child Health Bureau Using the National Survey on Children with Special Health Care Needs to Monitor Progress on Community-Based Systems of Services Merle McPherson, M.D., M.P.H. Director, Division of Services for Children with Special Needs, MCHB, HRSA MCH DataSpeak, May 22, 2003

2. Maternal and Child Health Bureau Overall Monitoring Strategy National Survey provides 2001 national, consumer- driven baseline for performance measures on 5 of 6 core outcomes: Family partnership and satisfaction Medical home Adequate insurance Easy-to-use community systems Transition National Health Interview Survey provides baseline on early and continuous screening Survey to be repeated for mid-term and final data Additional data sources will be added

3. Maternal and Child Health Bureau Progress to Date Chartbook on National Survey findings completed National and State data Papers submitted for publication on key survey findings, monitoring strategy, and medical home Data on performance measures—and their components—being disseminated to State Title V/CSHCN Programs Pilot complete on interactive Data Resource Center to help State programs and families use and understand data from National Survey

4. Maternal and Child Health Bureau Some Data Gaps National Survey on CSHCN does not provide adequate data on early or continuous screening; This only partially addressed through National Children’s Health Survey and other available data sets on newborn metabolic and hearing screening Additional data on adolescent transition are also needed; SLAITS framework for both CSHCN and Children’s Health surveys does not allow for interviews with families of youth older than 17 or of youth themselves Questions on transition added late in survey; State numbers are small

5. Maternal and Child Health Bureau Next Activities Additional papers in progress on other core outcomes “Report cards” on MCHB programs on each outcome also in progress Interactive Data Resource Center to be made operational in 2004 Monitoring strategy being refined; other datasets being assessed for inclusion

6. Maternal and Child Health Bureau Ongoing Monitoring Strategy Four major components Monitoring the core outcomes Developing the evidence base for each core outcome Dissemination of information on core outcomes Training potential users of data on core outcomes

7. Maternal and Child Health Bureau Long Term Work Developing process for revision of National Survey for 2005 Addressing concerns and gaps raised by 2001 data Ensuring adequate consistency for ongoing monitoring Developing new sources of data where needed Using data to bring about change Achieving the President’s New Freedom Initiative Ultimate goal is implementing community-based service systems for CYSHCN!

8. Maternal and Child Health Bureau Contact Information For more information on using the National Survey on CSHCN to monitor the development of community systems of services, contact: Gloria Weissman Deputy Director Division of Services for Children with Special Health Needs 301-443-8999 gweissman@hrsa.gov