Improving Financing of Care for CYSHCN

1. Improving Financing of Care for CYSHCN Deborah Allen, ScD The Catalyst Center

2. The prevailing wisdom • As long as you make sure they have coverage, CYSHCN will be okay • Especially given: • Title V • Early intervention • IDEA • Medicaid TEFRA/HCBS waiver programs • SSI

3. So… There can’t be any real “financing problem” for children and youth with special health care needs

4. Not Quite • Yes, most children with special health care needs have health care coverage* • If low income, covered by Medicaid • At higher income, covered by private insurance • If disabilities are severe, may be covered under TEFRA or Medicaid HCBS waiver program • But…. *Although in Michigan, almost 7% actually lacked coverage at some point in 2005-6

5. Nationally, over 18% of families reported financial problems in 2005-6

6. And in Michigan • Almost 20% of families spent more than $1000 on expenses for CYSHCN in 2005-6 • Up from 8% in 2001 • And 16% of families reported hardship related to the cost of their children’s care

7. A minimum estimate of cumulative MI family expenditure

8. Family Employment and Income • From National CYSHCN Survey • 1/4 of families nationally reported that having a CYSHCN affected family employment • In Michigan, it’s over 25% -- higher than the national rate • From National Longitudinal Survey of Youth • Mothers of children with disabilities earn less than other mothers • Families of children with disabilities earn less and have a lower net worth than other families • Families of children with disabilities reported net assets $36,000 below other families

9. When families are the payer of last resort: • Family debt, bankruptcy • Children do not receive needed services • Other family members are affected – less funds for food, clothing, housing, education • Marital/family stress

10. Pathways to Hardship • High expenses for items unique to families of CYSCHN • Higher expenses for items every family needs • Loss of employment income

11. Catalyst Center strategy • Define and document “the problem” • Expand coverage • Reduce underinsurance • Promote funding for needs that are outside the realm of health insurance • Promote funding for infrastructure

12. Define and document the problem • Disseminate available research findings • Develop, pilot and promote new medical debt survey instrument • How does debt affect families • Capture and publicize family stories • Capture national picture • Capture state picture

13. Expand coverage • Provide TA to states around Medicaid expansion option under FOA • Recognize what it can and can’t do • How is FOA different from a waiver • What are the limits on FOA • Estimate the cost • Based on realistic estimates of uptake • Learn from other states • Publicize innovative coverage strategies via Chartbook

14. Address underinsurance and costs that are outside the realm of insurance • FOA is relevant here too • Provide TA to states on Catastrophic Illness Relief • Creating political will • Understanding day-to-day operations • Documenting costs and benefits • Publicize innovative financing strategies via Chartbook

15. Fund infrastructure • Provide TA to states re expansion of care coordination • To cover whole state • To cover CYSHCN defined broadly • Components of TA • Help in defining the nature of the service • Help in identifying funding options • Help in predicting cost • What determines cost • Who does it • Caseload • System costs • Publicize innovative financing strategies via Chartbook

16. Collaboration with the Catalyst Center • Use the Chartbook • Help us review medical debt instrument • Help us collect family stories • Collect stories at the state level • Pursue Medicaid buy-in option • Work with us to expand resources for care coordination

17. Find out more http://www.hdwg.org/catalyst/