Diane D. Behl, Adrienne L. Akers, and Richard N. Roberts Early Intervention Research Institute

1. A Collaborative Approach to Measuring Service Systems for Children and Youth with Special Health Needs Presented at the First International Society for Child Indicators Conference Chicago, IL June 27, 2007 Diane D. Behl, Adrienne L. Akers, and Richard N. Roberts Early Intervention Research Institute Utah State University Logan, UT

2. Purpose of Presentation • Increase awareness of broadly-defined children and youth with special health care needs. • Promote six federal performance measures. • Describe participatory approach used for developing indicators.

3. Children and Youth with Special Health Care Needs (CYSHCN) are defined as… those who have or are at risk for physical, developmental, behavioral, emotional conditions. require health and related services of a type or amount beyond that required by children generally.

4. Federal Performance Measures for CYSHCN • Families are partners in decision-making at all levels. • Children receive coordinated, ongoing, comprehensive care within a medical home. • Families and youth will have adequate private/public insurance to pay for the services they need. • Children are screened early and continuously for special health care needs. • Services are organized so families can use them easily and are satisfied with services they receive. • Youth with SHCN receive the services necessary to make transitions to adult life, including adult health care, work, and independence.

5. Researchers/ Evaluators The M&M Project Original MCHB grant from 1999 – 2003 objectives: Identify state-level measurement capacity Develop meaningful indicators Develop measurement strategies and tools Pilot measurement efforts in multiple states Report results and disseminate Consumers/ Family Voices Administrators & providers … via a Participatory Action Research Approach

6. Family Partnership in M&M was Essential to..... Guide the development of the indicators, ensuring that they reflect family priorities Ensure measurement tools were meaningful to families Help interpret data as they are collected Ensure that data findings are used

7. M & M States Vermont Oregon Iowa Ohio Utah Colorado South Carolina Arizona Florida Hawaii

8. PAR Process Used to Develop Indicators Initial list of approximately 100 indicators were identified from Literature Review and recommendations from experts in field Ratings of top 5 indicators were obtained from 15-20 stakeholders in 6 states Ratings of top 5 indicators were obtained via group consensus in each of 6 states Ratings of top 4-5 indicators were obtained via consensus across 6 states DSCSHN confirmed final list of indicators

9. Example of Measurement Analysis for M&M Indicators Outcome 2: CYSHCN will receive regular ongoing comprehensive care within a medical home. Indicator 1: % of CSHCN with a regular source of primary medical care through a primary care provider.

10. M&M Accomplishments State teams expanded their partnerships to enhance systems building. The indicators proved to be valid components to guide service system development. States identified potential strategies to enhance measurement via data warehousing, expanding sample size of surveys, inter-agency measures. The “Assessment to Action” Tool was developed for states & is available at championsinc.org, click on Measuring Outcomes.

11. Future Directions Increase use of existing data to monitor systems building progress. Use data for social marketing and building partners. Apply indicators to community-level measurement and systems building. Increase measurement with under-represented populations.