1. Flexible Funding: Catastrophic Illness Relief Funds Josie Thomas Parent’s Place of Maryland And Chair, Catalyst Center Advisory Committee Deborah Allen, ScD Boston University School of Public Health

2. Agenda for Call Introduction –Agenda and participants –The Catalyst Center –The Catalyst Center Chartbook on Coverage and Financing for CSHCN Living in the Gap –Medical debt and hardship among families raising CYSHCN Filling in the Gap –Catastrophic Relief funds for families raising CSHCN Replicating the Model –How have funds gotten started –Learning from experience

3. The Catalyst Center Staff Mandate Agenda

4. State-at-a-Glance Chartbook Educational and inspirational tool for state policymakers and other stakeholders –Key indicators of health care coverage for children and youth with special health care needs by state –Descriptions of promising practices in improving coverage and financing

7. Meg Comeau, MHA Director The Catalyst Center Health and Disability Working Group Boston University School of Public Health 617-426-4447, ext. 27 mcomeau@bu.edu www.hdwg.org/catalyst For more information, contact

8. Living in the Gap Medical Debt and Financial Hardship Among Families of CYSHCN

9. What do we know about family financial hardship? From National Survey of CSHCN*: –Over 20% of families reported financial problems –11% of families spent over $1000/year out of pocket – that’s over 1 million families –1.6% of families spent over $5000 out of pocket –At a MOST CONSERVATIVE ESTIMATE: Over $1.6 billion nationally! *NSCSHCN, 2001-2003

10. Family Employment and Income –In National Survey 1/3 of families reported that having a CYSHCN affected family employment –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

11. Widespread Impact Financial hardship is fairly common across all families of CYSHCN Particular impact on: –Single parent families –Families with uninsured children –Lower income families –Families whose child has a severe disability –Families whose child has a cognitive or behavioral condition

12. Pathways to Hardship Extraordinary expenses medications equipment supplies therapies mental health Extraordinary cost for ordinary expenses utilities housing transportation food clothing co-payments Loss of employment income

13. Impact of Financial Hardship Medical debt is responsible for 50% of all bankruptcies. Child does not receive needed services Other family members are affected – less funds for food, clothing, housing, education Marital/family stress

14. A Solvable Problem Solutions exist, we “just” need to implement them –New opportunities for coverage through FOA –Financing for care coordination AND –Catastrophic relief funds

15. Filling in the Gap: Catastrophic Relief Funds Case study: New Jersey’s Catastrophic Relief Program –How the program works Financing Eligibility Covered expenditures How cases are processed –Who applies and how –Who decides and how –Who handles payments –What is New Jersey’s experience to date Children served Covered items/expenses Impact on families Effectiveness

16. Catastrophic Relief, continued Other state experience Replicating the model –How did current programs get started –What are the lessons