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

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 1.Families are partners in decision-making at all levels. 2.Children receive coordinated, ongoing, comprehensive care within a medical home. 3.Families and youth will have adequate private/public insurance to pay for the services they need. 4.Children are screened early and continuously for special health care needs. 5.Services are organized so families can use them easily and are satisfied with services they receive. 6.Youth with SHCN receive the services necessary to make transitions to adult life, including adult health care, work, and independence.

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

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 Oregon Utah Arizona South Carolina Ohio Vermont Colorado Iowa Hawaii Florida

8. PAR Process Used to Develop Indicators 1.Initial list of approximately 100 indicators were identified from Literature Review and recommendations from experts in field 2.Ratings of top 5 indicators were obtained from 15-20 stakeholders in 6 states 3.Ratings of top 5 indicators were obtained via group consensus in each of 6 states 4.Ratings of top 4-5 indicators were obtained via consensus across 6 states 5.DSCSHN confirmed final list of indicators

9. Example of Measurement Analysis for M&M Indicators Data SourcesFor Whom and How Often Reported Adequacy of DataStrategies for Enhancing Measurement State CSHCN program family survey Children enrolled in some of CSHCN programs (clinics); usually collected every 5 years. Full scope of indicator captured? Add questions to capture indicators. State Child Health Survey Randomized household survey of Utah families. Data set reliable/valid?Expand sample size. Consumer Assessment of Healthcare Providers& Systems (CAHPS) CSCHN served via public & private managed care; collected every 2 years. Data collected with adequate frequency? Work with Health Care Financing to add questions. National Survey of CSHCN Randomized household survey of CSHCN from all states; collected every 4 yrs. Capture population of CSHCN? Disseminate results. National Survey of Children’s Health Randomized household survey of CSHCN from all states; collected every 4 yrs. Disseminate results. 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 1.State teams expanded their partnerships to enhance systems building. 2.The indicators proved to be valid components to guide service system development. 3.States identified potential strategies to enhance measurement via data warehousing, expanding sample size of surveys, inter-agency measures. 4.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.