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Flexible Funding: Catastrophic Illness Relief Funds

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. Agenda for Call. Introduction Agenda and participants The Catalyst Center

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Flexible Funding: Catastrophic Illness Relief Funds

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  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

  5. For more information, contact 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

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

  7. 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

  8. 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

  9. 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

  10. 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

  11. 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

  12. 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

  13. 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

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

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