While many policies that affect children and families have their roots in federal legislation, each state has a unique health insurance and delivery marketplace and a unique context for implementation of federal policy.

Medicaid and the Title V Children with Special Health Care Needs program both reveal this variability across states. The federal Medicaid program provides critical coverage for individual CYSHCN nationwide. It also assures a reliable funding stream for the health care infrastructure on which clinical care for individual children depends: it pays a large percentage of the cost for neonatal and pediatric intensive care units, for expensive pediatric biologicals and drugs (including so-called “orphan drugs”) and for the development and purchase of high-tech equipment and supplies required by some children for survival. The Title V Children with Special Health Care Needs program, which like Medicaid, has its legal base in the Social Security Act, plays a distinct but also critical role in systems of care nationwide: it provides funding for state programs that identify child and family needs, develops responsive programs and policies, and assures the availability, accessibility and quality of programs.

Even with this federal foundation, however, there is enormous variability across states in the way that federal policy is implemented. State policymakers and other stakeholders at the state level influence the structure and operations of state Medicaid and Title V programs; furthermore, they shape state policy on private insurance coverage for children and on the funding and governance of relevant programs in other areas (e.g., Early Intervention for children from birth to age three). As a result, states have a lot of room for discretion.

There is also room for creativity and experimentation at the state level around implementation of federal programs and direct state funding of care. Important state-level partnerships among consumers, providers, researchers, policymakers and advocates have resulted in many state-specific innovations that improve access to and/or quality of health care and related services for CYSHCN and their families. In fact, in many instances, state-level innovations have become the model for important federal programs and policies. Innovations that improve the financing of care for families living in a particular state may, therefore, have significance for children and families nationwide.

• To look up state data:
  
  Choose a state profile in the Get Data section. While viewing a state chart, check the box next to ‘Show Full Tips’ for information and insights to help you understand and make effective use of the variables presented.


• For an introduction to health care coverage and financing:
  
  Choose Explore the Four in the Get Inspired section. The Catalyst Center’s four broad financing objectives form a “road map” you can use to discover coverage and financing strategies.


• To learn more about coverage and financing strategies:
  
  In the Get Inspired section, choose Strategic Spending for brief strategy descriptions and examples. You might also visit the Glossary in the Get Help section.


• For inspiration from other states:
  
  See how other states pay for programs and services in Paying for X in the Get Inspired Section. Or choose Strategic Spending to see how particular financing options are being used.

The Get Inspired section of the site contains a database of more than 100 examples of how states are implementing health care coverage and financing strategies for CYSHCN. Catalyst Center staff compiled these ‘state strategies’ through surveys and key informant interviews with state Title V and Medicaid staff, along with selected parent leaders and other stakeholders.

Their responses appear here in terms as close to those they used as possible – both so users get a feel for the way a particular program is perceived in its home state, and to avoid inadvertent errors in our characterization of programs.

Some of the practices highlighted here have solid track records of success; others are promising but not yet fully tested. But all have demonstrated basic feasibility: they are all practices that are currently in place in at least one state.

During our research, we were encouraged and impressed by the extent to which states have adopted a range of strategies for improving health insurance and financing for CYSHCN.

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