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. 27mcomeau@bu.edu

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