Public Policy Background: Systems of Care for Children and Youth with Special Health Care Needs
An Introduction to Financing Care for Children and Youth with Special Health Care Needs (CYSHCN)
According to the National Survey of Children with Special Health Care Needs, approximately 12% of children and youth with special health care needs experienced gaps in insurance coverage during the year prior to the survey and many more were underinsured. Nearly a third of families have to give up work to care for CYSHCN. Innovative practices tested in other states are often not replicated elsewhere because of a lack of information and resources.
Thus, the national goal:
"Families of children with special health care needs (CSHCN) will have access to adequate public and/or private insurance to pay for the services they need."
Who are Children and Youth with Special Health Care Needs?
The Maternal and Child Health Bureau defines children and youth with special health care needs as:
"…those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by chiildren generally."
Using this definition, the National Survey of Children with Special Health Care Needs estimates that approximately 12.8 percent of children in the United States (or 9.4 million) have special health care needs.
The Healthy People 2010 National Agenda and the National Centers
Healthy People 2010 is a set of health promotion and disease prevention objectives established by the Federal government. Six core outcomes have been developed by the Maternal and Child Health Bureau, along with other stakeholders, to measure progress towards Healthy People 2010 goal 16-23: “Increase the proportion of territories and states that have service systems for children with special health care needs."
Stakeholder Groups
The work of the Catalyst Center emphasizes the importance of multidisciplinary collaboration and communication. We recognize there are multiple stakeholder groups in the patchwork quilt of health care coverage for CYSHCN. These include the Federal Maternal and Child Health Bureau, State Title V programs, families and other advocates for children and youth with special health care needs (CYSHCN), employers, public and private payers, unions, state Divisions of Insurance, health plans, providers, legislators and other policy-makers. Each of these groups has an important role in shaping access to comprehensive health coverage for CYSHCN.
The Catalyst Center has identified a list of groups that have an important role in shaping access to comprehensive health coverage for CYSHCN.
