Introduction To Using Our Website

The State-at-a-glance Chartbook has state-specific statistical data related to the coverage and financing of care for CYSHCN including:

• Demographics (population, % low birth weight, % receiving special education)
• Economic Indicators (per capita income, Medicaid eligibility, education expenditures)
• Child Health Services (% of children receiving oral health care, % of children in foster care)
• Factors Influencing Health Insurance Coverage (% uninsured, % receiving public coverage, state-mandated benefits)

The bulk of our website is used to describe proven strategies currently in use that improve the coverage and financing of care for CYSHCN in four important areas:

• Cover More Kids: Strategies to reduce the number of CYSHCN who do not have public or private insurance
• Closing Benefit Gaps: Strategies to enhance coverage for CYSHCN whose health insurance benefits are inadequate
• Paying for Additional Services: Strategies to finance care coordination, respite care, home modifications, and other wrap-around services for CYSHCN and their families that insurance doesn’t typically cover
• Building Capacity: Strategies to promote stronger, more comprehensive systems of care for CYSHCN

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. The financing strategies described on this page are feasible; they are all practices that are currently in place in at least one state.

Data Collection Methods

The state-specific examples discussed in the four financing strategy sections of the website (Covering More Kids, Closing Benefit Gaps, Paying for Additional Services and Building Capacity) were collected through a series of telephone interviews we conducted with as many Title V and Medicaid programs as possible, usually interviewing the Directors of CSHCN programs at Title V agencies, and at Medicaid, senior staff or individuals identified as having the most knowledge of programs for CSHCN. We also collected written surveys from representatives of family leadership organizations in the states, usually Family Voices. For some of the programs discussed in this section, we obtained more detailed information from state agency or program websites, including the Centers for Medicare and Medicaid Services(CMS) or publications or surveys produced by:

• The National Academy for State Health Policy (http://www.nashp.org)
• The Kaiser Family Foundation (http://www.kff.org)
• The Maternal and Child Health Policy Research Center (http://www.mchpolicy.org)
• The Data Resource Center for Child and Adolescent Health (http://www.childhealthdata.org)

Limitations

Our website does not purport to represent an exhaustive review of all health care coverage and financing strategies that are available for CYSHCN across all states. As we collected data primarily from Medicaid, Title V and Family Leaders, we only discuss the programs that they identified and that we determined were innovative or otherwise relevant. Discussion of innovations developed in the private sector is more limited. We update this data every two years so some of the programs we describe might have been expanded, altered, or are no longer in existence.  For more information, please feel free to contact the Catalyst Center directly.