Unmet Need for Home Health Care

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, our Foundation contracted with NORC at the University of Chicago to conduct a national survey and focus groups of parents of CYSHCN to better understand the challenges they face. The findings of this work indicate 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. 

This brief focuses on Unmet Need for Home Health Care. Findings include: 

• 1 in 5 CYSHCN needed home health care in the past 12 months. 

• Nearly 40% of CYSHCN who needed home health care did not receive all the home health care they needed. 

• Hispanic CYSHCN had the highest level of unmet need for home health care, with 28% receiving none of the home health care they needed. 

The impacts of not receiving home health care were significant and included delayed receipt of needed treatment, development of new symptoms or health complications, and missed days of work for caregivers.

Read more about the survey and focus group methodology and view the other data briefs.