Breaking the link between children’s special health care needs and financial hardship
Printable version (PDF, 44 pages)
Breaking the Link urges policymakers to improve the system of financing care for children with special health care needs and their families.
An effective national health care reform plan must include a comprehensive understanding of the unique financial challenges faced by families raising children with special health care needs. The latest publication from the Catalyst Center, Breaking the Link Between Special Health Care Needs and Financial Hardship, describes the three distinct “links” between children with special health care needs and family financial hardship. It provides policymakers and advocates with examples of proven strategies and policy solutions that can reduce the impact of medical debt and underinsurance. View report (PDF, 44 pages)
A Call to Action
Breaking the Link Between Special Health Care Needs and Financial Hardship extends a call to action to a wide range of partners, each of whom can play a critical role in reducing financial hardship for families of children and youth with special health care needs.
Pathways to Hardship
“We looked ‘too good’ to need help…”
“We are ‘forced poor’ [to qualify for Medicaid]…”
“I have had to quit work…”
Research by the Catalyst Center has found that the estimated two million families nationwide caring for children with special health care needs are at risk for being “linked” to financial hardship because they have higher out-of-pocket health care costs, higher household and family expenses than families raising typically healthy children, and reduced employment income. These factors can bring families to financial hardship whether they were low-, middle-, or even high-income before raising children with special needs. And the impact of financial hardship depends partly on which state a family calls home. Significant state variability in the programs offered result in certain American families being supported in caring for their children, while those just across the border in a neighboring state suffer devastating financial hardship.
Proven Policy Solutions for Children with Special Health Care Needs
Breaking the Link illustrates the impact that coverage and financing gaps have on the lives of real families, while simultaneously describing policy solutions that are in place in some states that can offer promising practices and models to others. These tested strategies go beyond ensuring access to basic health insurance. They encompass programs that offer an enhanced range and depth of health care benefits for children with chronic illness or disability, and flexible financing for family supports. For too long, we have seen innovations like those described in this publication piloted, demonstrated, and implemented successfully but with only small numbers of families benefiting. As our nation turns its attention to health care reform, recognition of the prevalence and depth of family hardship should be a spur to growing these effective interventions to scale across the nation.
