Briefing on Kennedy-Brownback Legislation
On January 16, 2008, a closed briefing was held for Senate staff members on The Pre-Natally and Post-Natally Diagnosed Conditions Awareness Act (S. 1810), known as the Kennedy-Brownback bill. Representatives from both NDSC and NDSS were invited and attended this briefing. Staff members heard Mia Peterson, self-advocate, and Brian and Michelle Wray, parents of Matthew who has Down syndrome, discussing the quality of information they received before and after the birth of Matthew. According to Mr. Wray, “we know, first hand, what it was like to not be given this critical information and access to resources in a timely and effective manner.” Andy Imparato, of the American Association for Persons with Disabilities (AAPD) provided a cross-disability perspective on the issue of genetic testing.
This meeting was held to brief Senate staff members on S. 1810 before the bill is marked up by the Health Education Labor and Pensions (HELP) committee. The mark-up, which is a process whereby Committee members meet formally to make changes to the bill, is now tentatively scheduled to take place on January 30th. Hopefully, any differences among Senate members can be worked out prior to the mark-up.
We continue to follow this process closely and in consultation with NDSS, tracking, reviewing and discussing minor language changes with Senate staff. Since the legislative process is, by nature, in a constant state of flux, we want to ensure that grassroots efforts will be used when they have the greatest chance of success.
To see the most recent version of the bill that has been introduced, go to: http://thomas.loc.gov/ and key in S. 1810 in the space for the bill number.
HT National Down Syndrome Congress