More than 14.5 million children and youth (birth to 18 years old) in the United States have special health care needs.
Given the financial and other consequences experienced by families caring for these children and the impact on federal and state programs serving them, efforts to improve their systems of care are underway or being discussed in many states.
This brief provides an overview of programs, funding options, standards, data, state approaches and policy options that states have used or may consider to improve systems of care for children and youth with special health care needs (CYSHCN) and their families.
In general, this population includes children from birth to age 18 with a wide range of physical and mental conditions. These include diabetes, asthma, developmental or intellectual disabilities, attention deficit disorder, autism, autoimmune deficiency and cancer, as well as complex conditions and other needs.
Approximately one-third of children and youth with special health care needs rely on Medicaid or the Children’s Health Insurance Program (CHIP) for some or all of their health care coverage. State policies for public and private insurance affect these children and their family’s health, well-being and financial security.
The National Survey of Children with Special Health Care Needs indicates that 25 percent of families with CYSHCN cut back on hours or stop working altogether to take care of their children. Families with CYSHCN have many needs beyond financial concerns. Some families need assistance navigating services; accessing a medical home, education and training; or getting to and from appointments. States are exploring a variety of strategies to respond to the ever-changing health care landscape.
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