NCD Letter to NIH Regarding the National Children’s Study

April 27, 2012

Office of Management and Budget
Office of Information and Regulatory Affairs
Attn: National Institute of Health (NIH) Desk Officer For
Mr. Francis S. Collins, M.D., Ph.D
Director
National Institutes of Health
9000 Rockville Pike
Bethesda, Maryland 20892

Dear Dr. Collins:

I am writing on behalf of the National Council on Disability (NCD)—an invited participant to meetings of the National Children’s Study Federal Consortium—to pose two key questions relevant to the National Children’s Study, specifically the Main Study (scheduled for launch in 2013).These questions are based on NCD’s findings in a forthcoming study on parents with disabilities and their children:

(1.) What outreach mechanisms are being utilized to include parents with disabilities and their children in the Main Study.

(2.) How does the Main Study gather information that will identify whether parents with disabilities are included in the sampling, including a way to disaggregate the data?

NCD applauds the U.S. Department of Health and Human Services (including its specific internal divisions) and the U.S. Environmental Protection Agency for their joint leadership in the planning and implementation of the National Children’s Study. In consideration of the significance and breadth of the Main Study, NCD encourages targeted outreach to ensure inclusion of parents with disabilities and their children in the sampling.

As indicated above, NCD is finalizing a report which provides a comprehensive examination of a variety of issues facing parents with disabilities. The number of parents with disabilities is expected to grow, includingthe prevalence of veterans with disabilities and health conditions acquired while serving in the military.

NCD has found that despite the increasing number of people with disabilities creating families, there is a paucity of data and research on the prevalence, needs, and experiences.  Adequate public policy development and program planning to address the issues and meet the needs of parents with disabilities and their children cannot occur without accurate data.

Thank you for your attention and response to this critical issue. NCD looks forward to its continued participation in the ongoing meetings and stands ready to assist you in your efforts to benefit America’s children, including those whose parents have disabilities.

We are available to discuss these matters at your earliest convenience. Please contact me through NCD’s office at (202) 272-2004.

Respectfully,

Jonathan Young, Ph.D., J.D. 
Chairman

cc: Patricia O’Campo, PhD, Acting Chair, National Children’s Study Federal Advisory Committee