1. Maternal and Child Health Bureau DECEMBER 20001 SLAITS Survey on Children with Special Health Care Needs Bonnie Strickland, Ph.D. MCHCOM.COM Webcast December 8, 2000

2. Maternal and Child Health Bureau DECEMBER 2000 2 National CSHCN Survey: Partnership between Maternal and Child Health Bureau (MCHB) and National Center for Health Statistics (NCHS) Using SLAITS, complete 750 CSHCN interviews per state. Data available Summer 2002

3. Maternal and Child Health Bureau DECEMBER 2000 3 Purpose: Establish uniform state, regional, and national prevalence estimates for CSHCN under 18 with existing special health care needs using the MCHB definition, Provide state, regional, and national data for CSHCN characteristics and systems impact as baseline estimates for federal and state performance measures, Title V needs assessment activities; and HP 2010.

4. Maternal and Child Health Bureau DECEMBER 2000 4 Additional Purposes: Provide estimates of health care coverage for all children; and Provide information on low income, uninsured, families regarding health status and Medicaid/SCHIP

5. Maternal and Child Health Bureau DECEMBER 2000 5 Prevalence Estimates Using Uniform Measure: Living with Illness Survey (Foundation for Accountability) Questionnaire for Identifying Children with Chronic Conditions (QUICCC-R)

6. Maternal and Child Health Bureau DECEMBER 2000 6 Examples of Screener Topics Need or use medicine prescribed by a doctor Need or use more medical care, mental health, or educational services than is usual for most children Limited or prevented in ability to do things Need or get special therapy Need or get treatment or counseling for an emotional, developmental, or behavioral problem

7. Maternal and Child Health Bureau DECEMBER 2000 7 Interview Process Households screened for children under 18 NIS conducted if household has a 19-35 month old child Screener to identify children with special health care needs Detailed questionnaire for children with special health care needs Target sample size: 750 CSHCN per state

8. Maternal and Child Health Bureau DECEMBER 2000 8 Characteristics and Impact Data: Service Needs and Systems Adequacy Demographics health and functional status access to care care coordination satisfaction with care health insurance coverage adequacy of health care coverage impact on family

9. Maternal and Child Health Bureau DECEMBER 2000 9 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

10. Maternal and Child Health Bureau DECEMBER 2000 10 Access to Care: Usual source of care (location and provider), Reasons for delay in obtaining needed health care, Difficulty in obtaining specific services

11. Maternal and Child Health Bureau DECEMBER 2000 11 Care Coordination: Availability Source of care coordination Coordination within health Coordination with community services Services from Title V

12. Maternal and Child Health Bureau DECEMBER 2000 12 Satisfaction with care: Time spent with child/family Listening and partnership Respect for values and customs Adequacy of information

13. Maternal and Child Health Bureau DECEMBER 2000 13 Health Insurance Coverage: Source of insurance Gaps in insurance coverage Duration of uninsurance

14. Maternal and Child Health Bureau DECEMBER 2000 14 Adequacy of Health Care Coverage: Adequacy of benefits, Out-of-pocket costs, Access to health care providers, Adequacy of information, Overall satisfaction

15. Maternal and Child Health Bureau DECEMBER 2000 15 Impact on Family: Out-of-pocket expenses, Health care provided by family, Time spent providing and coordinating care, Financial and employment impact.

16. Maternal and Child Health Bureau DECEMBER 2000 16 Objective / Performance Measure All CSHCN will receive regular ongoing comprehensive care within a medical home Existence of a primary care provider Care coordination by PCP Communication between PCP and other health providers, schools, and child care providers

17. Maternal and Child Health Bureau DECEMBER 2000 17 Objective / Performance Measure All families of CSHCN will have adequate insurance to pay for the services they need Current health insurance coverage No insurance and gaps in coverage over past 12 months Delays or failure to get needed care due to costs Access problems due to health plan Satisfaction with health plan

18. Maternal and Child Health Bureau DECEMBER 2000 18 Brief Interview for Children Without Special Needs Health Insurance Coverage Demographics

19. Maternal and Child Health Bureau DECEMBER 2000 19 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.

20. Maternal and Child Health Bureau DECEMBER 2000 20 Schedule Questionnaire FinalizedNov 1999 PretestingMar – Sept 2000 Conduct interviewsOct 2000 – 2001 6 month national dataSept 2001 State-level dataSummer 2002 Repeat periodically