Health Care Needs of Children With Down Syndrome and Impact of Health System Performance on Children and Their Families

2012

Don Lollar
[email protected]
503-494-8364

Objective: The functional, financial, and social impact on families of children with Down syndrome (DS) in the United States and the role of the US health care system in ameliorating these impacts have not been well characterized. We sought to describe the demographic characteristics and functional difficulties of these children and to determine whether children with DS, compared with children with intellectual disability (ID) generally, and compared with other children and youth with special health care needs (CYSHCN), are more or less likely to receive health care that meets quality standards related to care coordination and to have their health care service needs met. Conclusions: In this study, the families of children with DS, and ID generally, are burdened disproportionately when compared with other CYSHCN, reflecting the combination of impairments intrinsic to DS and ID and impacts of suboptimal medical care coordination and social support.

Down syndrome, Disparities, Intellectual Disability, Children, Families

Peer-reviewed publications in scholarly journals Published/In Press

Consumers/Families, Professionals, Students

http://journals.lww.com/jrnldbp/Abstract/publishahead/Health_Care_Needs_of_Children_With_Down_Syndrome.99757.aspx

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