FELSC Family Engagement and Leadership in Systems of Care

What We Know About CYSHCN

Families of CYSHCN must work extra hard to achieve the best possible life for their child because the systems that serve their children are complex.  
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Who They Are

Approximately 25% of households in the United States have children and youth with special health care needs (CYSHCN), who are at risk for chronic physical, developmental, behavioral, or emotional conditions.  

The Care They Receive

Almost 86% of CYSHCN age 1 – 17 years do not have access to a well-functioning system of services. Furthermore, CYSHCN are less likely than other children to receive care in a medical home.

Socioeconomic Status

Nationally, only 10.2% of CYSHCN who live in poverty (household income < 99% FPL) receive care in a well-functioning system, compared to 16.2% of CYSHCN in households with income > 400% FPL. Limited household income impacts families’ ability to obtain referrals and navigate systems and transitions.   


CYSHCN with a primary language other than English are less likely to receive preventive care and screening, have easy access to needed medical care, engage in shared decision making with their provider, and have a medical home or primary medical provider. They are more likely to be uninsured and have no usual source of care.

Where They Live

Geography and diagnosis affect a child’s access to a well-functioning system of care. Only 1.8% of children with autism receive care in a well-functioning system. There are significant differences in diagnosis and access to autism services for children in rural communities. While not specific to children, people living in rural and Health Professional Shortage Areas (HPSAs), who are historically underserved due to race or ethnicity, have more unmet health needs than white, non-Hispanic individuals in suburban areas. 


Children and adolescents who identify as LGBTQIA+ are often bullied, rejected socially, and face rejection by their families, which predisposes them to higher rates of depression and poorer health outcomes than their heteronormative peers. Twenty-one states have restrictions on medical care, and school activity participation, and discussions about gender identity, which may further impact access to healthcare, as well as physical and mental health care for these youth. 

Focusing on CYSHCN at the Intersections

The intersection of immigration status, language, culture, race, diagnosis, identity, and geography negatively impacts access to care for many CYSHCN.  

These disparities necessitate the inclusion and engagement of those underrepresented in healthcare advocacy and leadership in order to increase access to well-functioning systems of care, identify barriers to that access, and improve family well-being and quality of life.   

Family Engagement and Leadership in Systems of Care (FELSC) is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number (U4000149). The information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.

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Our Vision

With families at the center of health care, all children and youth reach their full potential and health disparities are eliminated.

Our Mission

Family Voices is a national organization and grassroots network of families and friends of children and youth with special health care needs and disabilities that promotes partnership with families—including those of cultural, linguistic and geographic diversity—in order to improve health care services and policies for children.

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