Access to genetic counseling for children with autism, Down syndrome, and intellectual disabilities.
OBJECTIVE
We examined the need for genetic counseling services (GCS) for families of children with autism spectrum disorder (ASD), Down syndrome (DS), and/or mental retardation (MR) and factors that influence the receipt of needed GCS for those children relative to other children with special health care needs (CSHCN).


METHODS
Analysis was conducted on the 2005-2006 National Survey of Children With Special Health Care Needs, a nationally representative sample. Bivariate analyses were conducted by examining need for and receipt of GCS for children with ASD, DS, and/or MR and other CSHCN as well as differences by contextual variables using the health belief model (HBM). Logistic regression analyses were conducted to assess the relative impact of receipt of needed GCS by HBM constructs.


RESULTS
Families of children with diagnoses of ASD, DS, and/or MR perceive significantly higher need for GCS than other CSHCN. The presence of a medical home is the single most important factor in facilitating access to GCS, together with the presence of insurance, particularly private or a combination of private and public insurance. As income and education attainment decrease, barriers to GCS rise.


CONCLUSIONS
This analysis supports strategies for improving linkages between specialty providers and the medical home at which primary care is delivered. Increased effort should be made to attend to those who experience barriers that result from lack of insurance, poverty, low education, or racial or ethnic differences. Health professionals need to collaborate in developing solutions to underinsurance or lack of insurance for CSHCN.
McGrath
Robert J
RJ
University of New Hampshire, Department of Health Management and Policy, Hewitt Hall, Suite 323, Durham, NH 03824, USA. robert.mcgrath@unh.edu
Laflamme
David J
DJ
Schwartz
Amy P
AP
Stransky
Michelle
M
Moeschler
John B
JB
D001321:Autistic Disorder / Q000235:genetics*; D002648:Child; D004314:Down Syndrome / Q000235:genetics*; D005260:Female; D005817:Genetic Counseling; D015438:Health Behavior; D007722:Health Knowledge, Attitudes, Practice; D006291:Health Policy; D006297:Health Services Accessibility / Q000706:statistics & numerical data*; D006301:Health Services Needs and Demand / Q000706:statistics & numerical data*; D006801:Humans; D008607:Intellectual Disability / Q000235:genetics*; D016015:Logistic Models; D008297:Male; D018802:Patient-Centered Care / Q000706:statistics & numerical data*; D014481:United States