May 10, 2011

Q & A: Finding (and using) data on the importance of programs that improve financing and coverage of care for CYSHCN

The Catalyst Center

Your Questions, Answered


Q:  I work in state government. Because of my position, I can't advocate, but I can share information with policymakers on the consequences of some funding cuts they're considering to the health and well-being of kids with special needs and their families. Where can I find good quality quantitative and qualitative data on the importance of maintaining programs that support coverage and financing of care for CYSHCN?


A:  In these tough economic times, everyone from individual families to the federal government is struggling to make difficult choices in determining what to spend money on and what to cut.  Policymakers who are responsible for deciding how increasingly scarce public funds are allocated may not be aware of just how critical programs like Medicaid and the Children's Health Insurance Program (CHIP) are to ensuring access to health care for children and youth with special health care needs and alleviating medical debt and financial hardship for their families. Stakeholders are making the case that these and other programs are vitally important to increasing universal and continuous, adequate and affordable health coverage for CYSHCN; requests for help from the Catalyst Center on how to do that are up almost 35% over last year. 

While the volume of askers has increased, it's not a new question. The Catalyst Center would like to draw your attention to some resources that can help answer it.  


Breaking the Link between Special Health Care Needs and Financial Hardship


Breaking the LinkIn 2009, the Catalyst Center released Breaking the Link between Special Health Care Needs and Financial Hardship. Breaking the Link combines quantitative data from a variety of sources with narrative descriptions of the impact of coverage and financing gaps on the lives of real families from across the country. It describes the three distinct "links" between CYSHCN and family financial hardship. The causes of financial hardship for families of CYSHCN are complex and often intertwined. Some relate directly to a lack of health insurance, while others result from underinsurance-the gaps in coverage that result when a public or private insurance policy does not cover all of the services that are medically necessary for a child.

Breaking the Link also details several states' strategies for addressing these concerns and illustrates how these programs and policies are essential not only to the health of CYSHCN but also to the financial stability of their families. Some of the strategies covered include:  

·    Benefits Counseling
·    Care Coordination
·    Consumer/Family-Directed Care
·    Flexible Funding - Trust and Relief Funds
·    Mandated Benefits for Specialized Services
·    Medicaid Buy-In Programs 


Breaking the Link demonstrates the benefits - and the true necessity - of financing policies and programs that aim to increase access to care for CYSHCN and reduce financial hardship for their families. It also helps make the case for keeping them. 


Click here to open Breaking the Link Between Special Health Care Needs and Financial Hardship (PDF, 44 Pages)



MegdigitalstoryShow, don't tell: Digital story provides a case study on how raising a child with special health care needs can impact family finances.


Watch the digital story of Meg Comeau, Catalyst Center Project Director, and her family. In Working Hard Isn't Enough, Meg describes the financial challenges her family encountered after her daughter was born with a complex genetic disorder.   


Can't see the video? Click this link to watch it online:

Working Hard Isn't Enough:  One family's struggle to finance Sarah's special health care needs


Planning a presentation? You can request to include Working Hard Isn't Enough. Fill out our video request form to download a copy of the video file. 



dancingwithdataLearn to use data in a compelling way. Check out Dancing with Data to brush up on your research and presentation skills. 


Dancing with DataRead our publication, Dancing with Data, for help on creating a strong argument using quantitative and qualitative data. Dancing with Data provides lessons on basic research methods, choosing what data to use, and how to present your findings in a compelling, accessible way.