TO: NDSC Members and Affiliated Parent Groups 
FROM: Susan Goodman, Director Governmental Affairs, National Down Syndrome Congress
Madeleine Will, Vice President, National Down Syndrome Society Policy Center
DATE: November 12, 2008

NDSC and NDSS Information Bulletin

On October 14th, President Bush signed The Pre and Postnatally Diagnosed Condition Awareness Act, known as the Kennedy-Brownback bill into law. This culminated three years of advocacy by NDSC and NDSS, affiliates and grass roots membership who have been working with Senate and House staff and advocates since 2005 to develop and pass this important legislation.

This bill is designed to improve information and increase referral to support services for parents receiving a prenatal or postnatal diagnosis of Down syndrome and other conditions. The bill authorizes the federal government, through the Department of Health and Human Services to provide funds to entities such as a State or a political subdivision of a State; a consortium of 2 or more States or political subdivisions of States; a territory; a health facility or program operated by or pursuant to a contract with or grant from the Indian Health Service; any other entity with appropriate expertise in prenatally and postnatally diagnosed conditions (including nationally recognized disability groups), as determined by the Secretary of Health and Human Services.

Dr. Brian Skotko, member of the National Down Syndrome Society board of directors who has a sister with Down syndrome and conducted research on experiences of parents receiving a Down syndrome diagnosis published the findings of the 2005 study at Harvard Medical School. Dr. Skotko stated “research has shown that only 28% of physicians feel well-trained in delivering a prenatal diagnosis of Down syndrome.  This bill will seek to address this urgent request from clinicians to be better trained in delivering accurate and timely information to parents.”

According to Brooks Robinson, President of the National Down Syndrome Congress, “this is a tremendous step forward in our efforts to get reliable information to parents faced with a diagnosis of Down syndrome. The next challenge is to get it funded, which happens by trying to include an appropriation for it in next spring’s federal budget.” Congress must now include an appropriation in the budget in order for the bill to be funded. This will probably happen in the FY 2010 budget. The 2010 fiscal year begins October 1, 2009 although often the budget is not passed until several months after that time. NDSS and NDSC will continue advocacy efforts starting in the next session of Congress for an appropriation in the budget to fund the law.

After the appropriation is made, funding will be made available probably through a competitive grant process administered by the U.S. Department of Health and Human Services (DHHS). It is important that we advocate our views to DHHS to influence how the criteria are written for the grant competition. The entities that receive the grant funding will be responsible for carrying out the provisions of the legislation including:

• Developing vehicles for providing up-to-date, scientific information about life expectancy, clinical course, intellectual and functional development, and prenatal and postnatal treatment options
• Setting up referral networks to support services including hotlines, Web sites, information clearinghouses, adoption registries, and parent support networks and programs
• Developing and disseminating, to physicians and other health professionals up to date, evidenced-based information about Down syndrome and other prenatally diagnosed conditions.

Advocates lauded the passage of this important legislation. Doris Erhardt, parent and member of the Down Syndrome Association of Central Oklahoma, reflected the feelings of the Down syndrome community with the following statement: “Many of our members receive little or no useful information when they learn that their child has Down syndrome. We are excited at the passage of the Prenatally and Postnatally Diagnosed Conditions Awareness Act. Now the opportunity exists for families to receive the accurate, current, and nonbiased information they need at this emotionally-charged time in their lives.”

Mark W. Leach parent and board member of the Down Syndrome Association of Louisville and chair of the Affiliates in Action Informed Decision Making Task Force summarized the significance of this legislation:

“This important piece of legislation continues to further America in fulfilling the goal stated in our founding document of respecting each other as equals, regardless of race, gender, or other manifestation of our genetic constitution. This law will serve as a bulwark against history repeating itself here at the turn of the 21st Century. While genetic testing does provide more information, this law will provide greater assurance that parents receive up-to-date, scientific based information and the support they need during a trying time so that they may exercise improved informed choice, and that is something all Americans can support.”

If you have questions or comments about this Newsline, please contact Susan Goodman at susan@ndsccenter.org.