A first-of-its-kind national survey looks at children with special health care needs (CSHCN) and how their families perceive they are served by the health care system. It finds that an estimated 12.8 percent (about 9.3 million) of U.S. children have special health needs and require care or services beyond those provided for most children.
“Prevalence and Characteristics of Children with Special Health Care Needs,” by first author Peter C. van Dyck, M.D., M.P.H., associate administrator for maternal and child health at HHS’ Health Resources and Services Administration (HRSA), was published in September’s issue of the American Medical Association’s Archives of Pediatrics and Adolescent Medicine, http://archpedi.ama-assn.org/.
The article examines the results of the National Survey of Children with Special Health Care Needs (CSHCN), a 2001 telephone survey administered in households of 38,866 CSHCN under 18 years old in all states and the District of Columbia. The survey was developed by HRSA’s Maternal and Child Health Bureau (MCHB) in conjunction with CDC’s National Center for Health Statistics and translated into 11 languages for non-English speakers.
The goal of the survey was to identify CSHCN, provide state and national estimates of their numbers, and obtain information on factors associated with special needs children’s health and functional status and their families’ experiences with the health care system.
Family members responded to a comprehensive battery of questions that yielded findings such as the following:
· A higher prevalence of CSHCN was found among boys, who were 50% more likely than girls to have special health needs, and among older children, who were about twice as likely to have a special health need compared to children younger than 6.
· Non-Hispanic white and non-Hispanic black families were more likely to report having a special needs child than Hispanic families, while families living in poverty were significantly more likely to have a child screened for special health care needs.
· Almost 21 percent of families with a CSHCN reported financial problems due to a child’s condition, with 15 percent spending a large amount of time each week providing care and almost 30 percent reporting that at least one family member had to reduce or stop employment to provide care.
The survey uses MCHB’s broad definition of CSHCN focusing on the need for health services and not on specific conditions such as asthma or autism. MCHB defined CSHCN as “those children 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 children generally.”
Results of the survey will influence health services research, quality assurance in managed care, and policy and program development at the federal and state levels to improve care and services for CSHCN and their families.
