Conducting an Assessment of California’s Children with Special Health Care Needs

1. Conducting an Assessment of California’s Children with Special Health Care Needs Issues, Methods, and Recommendations Brianna Gass, MPH; Judith Belfiori, MA, MPH; Jennifer Rienks, PhD; Geraldine Oliva, MD, MPH Family Health Outcomes Project UCSF Department of Family and Community Medicine Funded by California Department of Health Services MCAH Branch

2. California Children’s Services (CCS) State program for Children with Special Health Care Needs (CSHCN), serving infants and youth under 21, enrolled in the program who meet medical eligibility, financial and residential criteria • Provides case management and payment for approved services • Promotes family centered, community based, coordinated care for CSHCN fhop

3. Title V Needs Assessment: Five-year plan required by Federal block grant program • CCS did assessment to identify 3 priorities to be incorporated into California MCAH Branch Title V Assessment and Plan • CCS contracted with the University of California Family Health Outcomes Project (FHOP) to identify indicators, gather data, and lead a statewide group of stakeholders through a process of identifying the needs CCS will address as 5-year priorities fhop

4. The six Federal MCHB Core Systems of Care Outcomes were used as an assessment framework: • Medical home • Family involvement & satisfaction • Screening • Insurance coverage & access to care • Organization of services • Transition to adulthood fhop

5. CCS Needs Assessment Methods: FHOP was contracted to: • Convene stakeholders group to assist with indicator selection, identification of data sources, and selection of criteria for prioritization of problems • Collect data: Primary source: CMS-net Secondary data sources: • Family Voices Survey • UCLA report • National survey of CSHCN • Report on results of data analysis • Reconvene stakeholders group to identify 3 priorities to address over next 5 years fhop

6. CCS Needs Assessment:Priorities Selected • Expand number of qualified providers participating in CCS program • Develop and implement a system of timely referral between mental health, developmental services, social services, special education, and CCS • Increase number of family-centered medical homes for CSHCN and % of CCS eligible children who have them fhop

7. CCS Needs Assessment: Challenges National definition of CSHCN is different from CCS-eligible population in California • This resulted in discrepancies in populations surveyed in various data sources (CA vs. Federal) • Budget constraints hinder ability of CMS to expand CCS-eligible population at this time fhop

8. CCS Needs Assessment: Challenges Identification of indicators- lack of data sources and inconsistent definitions • Lack of data on CCS population over time and across multiple service agencies • Lack of quantitative data on older children (ages 16-21) • Indicators that could be measured were limited by accessible data sources • Medical home was addressed with different questions and different definitions in various surveys. None of these definitions were consistent with the AAP definition of medical home fhop

9. CCS Needs Assessment: Challenges Process (services delivery) measures vs. Outcome (health status, functioning) measures • Pressure to show evidence of CCS program effectiveness (maintain or improve health status) in order to maintain/expand funding • Outcomes/performance for the population served by CCS are difficult to define fhop

10. Recommendations:Data development • Monitor service delivery disparities by race and age • Regularly update diagnosis data, allow for fields to be modified as new conditions arise or are identified • Implement AAP definition of Medical Home and train those doing data entry to use it • Collect data on percent of children participating in CCS program receiving preventive services fhop

11. Recommendations:Datadevelopment • Develop measures to monitor timely authorizations and eligibility determinations; time lapsed from authorization to referral, etc. • Restructure database of CCS-paneled physicians to include whether physician is accepting new clients • Increase size of California sample for National survey of CSHCN so data can be examined for subpopulations (race/ethnic groups, etc.) fhop

12. Recommendations:Next steps • Define outcome measures, indicators of CCS program effectiveness These could include measures of the health and functional status of CSHCN such as: • Extent to which a condition limits ability to do things other children can do • Overall severity and stability of condition • Number of school days missed fhop

13. Recommendations:Next steps • Standardize definitions (e.g. use AAP definition for Medical Home) • Create an integrated system of care for CSHCN and their families • Combine planning process for all programs serving CSHCN (across State health department programs) • HRSA-funded regional demonstration project will utilize information from Needs Assessment process in their development of a strategic plan for an appropriate, comprehensive, statewide system of care for CSHCN • Use of University resources to assist in future planning processes fhop