A population-based assessment of the health, functional status, and consequent family impact among children with Down syndrome

Laura A. Schieve, Ph.D., Sheree L. Boulet, Dr.P.H., Michael D. Kogan, Ph.D., Kim Van Naarden-Braun, Ph.D., Coleen A. Boyle, Ph.D.

Although the currently accepted terminology for mental retardation is “intellectual disability,” we use the term “mental retardation” in describing our results because this was the term used in the NS-CSHCN instrument and we wanted to provide the reader with an accurate sense of how the data were collected.

Disability and Health Journal
Volume 4, Issue 2, Pages 68–77, April 2011

Published Online: August 23, 2010
DOI: http://dx.doi.org/10.1016/j.dhjo.2010.06.001




Many health conditions have been described in children with Down syndrome (DS). However, there are little comparative population-based data available.


We sought to examine the health impacts associated with DS and other disabling conditions in U.S. children included in the 2005-2006 National Survey of Children with Special Health Care Needs.


We assessed numerous health and functional outcomes in children with DS and without DS but with (1) mental retardation/developmental delay1 and another developmental disability associated with a high functional impact; (2) mental retardation/developmental delay but no co-occurring high-impact disability; (3) other special health care needs; and (4) no special health care needs (referent).


Children with DS and in all 3 special health care needs comparison groups had substantially more health and functional difficulties than did the referent sample. Overall, children with DS were fairly comparable to children in the other mental retardation/developmental delay groups on health indicators; however, young children with DS were more likely than young children in both “other mental retardation” groups to have difficulties with breathing/respiration and swallowing/digestion/metabolism. Children with both DS and mental retardation associated with another high-impact disability had the highest levels of functional difficulties, unmet health needs, and family financial impacts. Nearly 60% of families in both groups provided home health care; in over 40%, a family member stopped working because of the child’s condition; and about 40% reported the child’s condition caused financial problems.


Children with DS can have substantial health and functional difficulties, with numerous financial impacts on their families.