As the possibility of national health care reform became a reality, the Catalyst Center identified three things children with special health care needs would need: Coverage that is universal and continuous, adequate, and affordable. 

Previous Catalyst Center calculations of costs per child for children with disabilities eligible for Medicaid coverage under the Family Opportunity Act were derived from Congressional Budget Office (CBO) estimates. In this revised estimate, we use information from the Medicaid Statistical Information System (MSIS) State Summary Datamart. 

Having health insurance doesn’t automatically protect families of children and youth with special health care needs (CYSHCN) from financial hardship. In the first edition of Breaking the Link, produced in 2009, the Catalyst Center identified three pathways that lead to financial hardship and medical debt, with examples from the lives…

Nationwide, there is growing interest in the use of care coordination as an integral component of comprehensive, quality care provided within the medical home model for children and youth with special health care needs (CYSHCN). A broad range of stakeholders – family members, advocates, state Title V Children with Special…

Mandated benefits are health care benefits or services that, with some important exceptions) private health insurers must cover. Every state mandates at least some health benefits, depending on emerging issues in that state.

Relief Funds pay for services families incur for their children and youth with special health care needs/disabilities that are not covered by private insurance, Medicaid, or any other public or private programs. Relief Funds function as a payer of last resort for families who struggle financially to meet the health care…

This Catalyst Center policy brief provides answers to frequently asked questions about the Family Opportunity Act (FOA) Medicaid Buy-in option, including what the advantages are for families raising children with disabilities and states, how it affects existing pathways to Medicaid, and any costs for families.  

Financial hardship is common among families raising CYSHCN. This Catalyst Center policy brief describes the three distinct but interconnected pathways. 

This guide is designed for policymakers, advocates, legislators, consumers, family members, and providers – in short, for anyone interested in financing care for children and youth with special health care needs at the state level, and in particular through the Medicaid program.

This interactive chartbook provides data on carefully selected indicators of health coverage and health care financing for CYSHCN in every state plus DC and Puerto Rico.