The National Survey for Children with Special Health Care Needs: Knowing How Many is Not Enough

1. The National Survey for Children with Special Health Care Needs: Knowing How Many is Not Enough Bonnie Strickland April 23, 2002

2. National Agenda for CSHCN • Grew out of work begun in late 70’s • Articulated a new model of care: • Partnership with families • Community-based care • Comprehensive services • Available and accessible • Serve a broad population of children

3. Definition of CSHCN • “Children with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”

4. Title V Legislative Requirements • Provide rehabilitative services for children under 16 receiving SSI if medical assistance is not provided through Medicaid • Provide and promote family-centered, community-based coordinated care • Facilitate the development of community-based systems of services

5. Healthy People 2010 • Increase the proportion of States and territories that have service systems for children with special health care needs (#16-23) • Increase the proportion of children with special health care needs who have access to a medical home (#16-22)

6. National Survey on CSHCN • MCHB Partnership with National Center for Health Statistics, using the sampling frame for the National Immunization Survey, • Identifies 750 CSHCN per state by random digit dialing telephone survey (approximately 40,000 children with special health care needs) • Data available December 2002, • Repeated every 4-5 years.

7. National Survey on CSHCN • Purpose: • Establish uniform state, regional and national prevalence estimates for CSHCN under 18 yrs. • Provide state, regional, and national data for determining the impact of the system on children with special health care needs and their families,

8. National Survey on CSHCN • Additional Purpose: • Provide estimates of health care coverage for all children, and • Provide information on low income, uninsured families regarding health status and Medicaid/SCHIP

9. National Survey on CSHCN • Potential uses: • Reporting on Title V Block Grant performance measures, • State and national needs assessment, • Reporting on Healthy People 2010, • Advocacy and research.

10. National Survey on CSHCN • Identification Tool: • Children with Special Health Care Needs Module developed by the Foundation for Accountability (FACCT), • Non-categorical screening tool, does not generate a medical diagnosis, • Identification based on limitations of daily activities, increased need for or use of services, medicine, special therapies or services.

11. National Survey on CSHCN • Interview on System Impact: • demographics • health and functional status • health insurance coverage • access to care • service utilization • care coordination • satisfaction • impact on family

12. Health and Functional Status • Extent to which condition limits ability to do things other children can do, • Overall severity and stability of condition, • IFSP or IEP, • School days missed.

13. Access to Care • Usual source of care (location and provider), • Reasons for delay in obtaining needed health care, • Difficulty in obtaining specific services.

14. Care Coordination • Availability, • Source of care coordination, • Coordination within health, • Coordination with community services, • Services from Title V.

15. Satisfaction with Care • Time spent with child/family, • Listening and partnership, • Respect for values and customs, • Adequacy of information.

16. Health Insurance Coverage • Source of insurance, • Gaps in insurance coverage, • Duration of uninsurance.

17. Adequacy of Health Care Coverage • Adequacy of benefits, • Out-of-pocket costs, • Access to health care providers, • Adequacy of information, • Overall satisfaction.

18. Impact on Family • Out-of-pocket expenses, • Health care provided by family, • Time spent providing and coordinating care, • Financial and employment impact.

19. Brief Interview for Children Without Special Needs • Health Insurance Coverage • Demographics

20. Medicaid and SCHIP • All low income and uninsured receive Medicaid/SCHIP section plus a subsection of the CSHCN questions: • Main reason for no health insurance • Awareness of Medicaid/SCHIP • Application, eligibility, and enrollment information, • Reasons for not wanting to enroll.

21. Update: Expanded Data Sources • Expansion Activities During Past Year: • Screener and selected interview items included in other State and national measures (Medical Expenditures Panel Survey) • Screener and selected interview items included in the Health Plan Employer Data and Information Set (HEDIS 2002), the national quality monitoring system for managed care organizations.

22. Research Questions • Research Questions: • Prevalence issues: What is the prevalence? How does it vary by age, sex, ethnicity, income, etc. • Health Needs: Are they being met? To what extent do unmet needs exist? • Insurance: What is the level, type, and how well does it work?

23. Research Questions • Impact on Family: Out of pocket expenses, employment, time spent on care coordination, • Care Coordination: What proportion receive it? How satisfied are families with these services? • Quality Care: How do parents perceive the quality of primary, specialty, and ancillary care? What factors are associated with better quality, more comprehensive care?

24. Research Questions • Medical Home: What proportion of children have access to a medical home, • Other Programs: How many children receive services from Title V, Early Intervention, or Special Education.

25. Challenges/Next Steps • Develop strategies for measuring early and continuous screening, • Develop a mechanism to survey youth with special health care 18 years and older, • Develop strategies for identifying children “at-risk”, • Develop strategies for identifying individual children and youth.

26. More Information • Web sites: • www.mchdata.net • www.cdc.gov/nchs/slaits.htm • www.facct.org/cahmi/html