National Survey Reveals the Health Care Experiences of Children and Youth with Special Health Care Needs

Data on the experiences of children and youth with special health care needs (CYSHCN) accessing health care services and resources is limited, and yet this group represents nearly 20 percent of the pediatric population. To learn more and inform our program’s strategy, the Foundation contracted with NORC at the University of Chicago to conduct a national survey of parents of CYSHCN to better understand the challenges they face.  

The results showed that across a range of different measures, CYSHCN and their families have lower levels of access to the health care services they need compared to children without special health care needs. There are also differences in experiences for specific subgroups of CYSHCN. Four data briefs showcase the results of this research, focused on: 

• Unmet Need for Home Health Care 

• Unmet Need for Medical Equipment and Devices 

• Unmet Need for Services Among Publicly and Privately Insured Children 

• Racial and Ethnic Disparities in Receipt of Needed Services 

The survey, informed by listening sessions with CYSHCN health care stakeholders, was conducted using NORC’s AmeriSpeak® panel—a probability-based, nationally representative sample. Parents of children under 26 were asked about their experiences accessing care and family supports, as well as perceived quality of care, and barriers to care and the impacts on their families. NORC also conducted four follow-up focus groups with survey participants to gain a deeper, more actionable understanding of families’ challenges.