Kennedy - Brownback Act |
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NDSS LEGISLATIVE ACTION ALERT - DEADLINE JULY 7, 2009 Consensus Conversation Statement - July 2009, NDSS & NDSC
Since its introduction by Sens. Edward Kennedy (D-MA) and Sam Brownback (R-Kan) in 2005, the Prentally and Postnatally Diagnosed Conditions Awareness Act, (S. 1810)—also known as the Kennedy-Brownback bill—has become a rally cry from innumerable families of children with disabilities to provide support to parents and prospective parents who learn that an unborn child may have a genetic, chromosomal or physical disability. Presidential candidate John McCain, whose running mate Alaska Gov. Sarah Palin is a mother to an infant with Down syndrome, signed on as a co-sponsor to the bill earlier this month. On September 23, 2008, the Senate passed the bill, which was passed again by the US House of Representatives and on October 8, 2008 President Bush officially signed the bill into law marking one of the most historic moments in the lives of families of children with Down syndrome. The measure, now passed, provides that families receiving a prenatal or postnatal diagnosis of Down syndrome or other conditions will be offered accurate and up-to-date information about the nature of the condition and also connected with support services. In addition, a registry of parents willing to adopt children with disabilities will be compiled and maintained. Dr. Brian Skotko of Children’s Hospital Boston played an instrumental role in the development of the Kennedy-Brownback bill, having completed research three years ago which clearly, and alarmingly, outlined that obstetricians and genetic counselors provided too little information when delivering a prenatal diagnosis of Down syndrome to pregnant women. Mothers who have children with Down syndrome, diagnosed prenatally, reported that doctors did not tell them about the positive potential of people with Down syndrome nor did they feel like they received enough up-to-date information or contact information for parent support groups. Further, the mothers reported that these shortcomings occurred at an emotional time when women are deciding whether or not to continue their pregnancies. Skotko’s study remains the largest and most comprehensive study on prenatally diagnosed Down syndrome, to date, and is available at www.brianskotko.com. Skotko, who also sits on the Massachusetts Down Syndrome Congress (MDSC) Board of Directors, has a sister with Down syndrome and also co-authored the award-winning book, Common Threads: Celebrating Life with Down Syndrome (Band of Angels Press). After learning the news about the passing of the Kennedy-Brownback bill, which he has actively championed for several years, Skotko said, "Research has shown that physicians often provide an inaccurate, incomplete, and sometimes offensive picture about Down syndrome when first presenting the news to parents. This legislation sets out to change that, and I am pleased by the prospect that new and expectant parents will begin to receive up-to-date information about Down syndrome so that they can make more informed decisions."
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