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, HRSAMCH DataSpeak, May 22, 2003

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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

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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

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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

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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

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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

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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!

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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