Flexible Funding:Catastrophic Illness Relief Funds
Josie ThomasParent’s Place of Maryland
AndChair, Catalyst Center Advisory Committee
Deborah Allen, ScDBoston University School of Public Health
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
The Catalyst Center
• Staff
• Mandate
• Agenda
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
Meg Comeau, MHADirector
The Catalyst CenterHealth and Disability Working Group
Boston University School of Public Health
617-426-4447, ext. [email protected]
www.hdwg.org/catalyst
For more information, contact
Living in the Gap
Medical Debt and Financial Hardship Among Families of
CYSHCN
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
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
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
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
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
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
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
Catastrophic Relief, continued
• Other state experience
• Replicating the model– How did current programs get started– What are the lessons
Recommended
