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NRL News Prenatally and Postnatally Diagnosed Conditions Awareness Act Introduced Senator Sam Brownback (R-Ks.) used a July 18 press conference to highlight the importance of the Prenatally and Postnatally Diagnosed Conditions Awareness Act which would assist parents of unborn and born children diagnosed with disabilities. The proposed legislation would require that families who receive a diagnosis of Down syndrome or any other condition, prenatally or up until a year after birth, be given up-to-date information about the nature of the condition and connection with support services and networks that could offer assistance. Sen. Edward Kennedy (D-Mass.) is a co-sponsor. The press conference featured a baby with Down syndrome, disability rights advocates, and an adult with Down syndrome who outlined his achievements. David Egan of the National Down Syndrome Society delivered a speech that helped dispel the myth that persons with Downs cannot function independently or enjoy meaningful achievements as productive members of society. Brian and Michelle Ray, parents of a baby with Down syndrome, explained the need for more information and support for parents who receive news of the diagnosis for their baby. Sen. Brownback observed, We as a society must offer as much protection as we can to the least of these. When a mother receives the news that her unborn child may be born with a disability, she should be supplied with current and reliable information about the many options available for caring for children with disabilities. The bipartisan bill would provide $5 million to increase the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally and postnally diagnosed conditions. The bill would also (1) increase patient referrals to providers of key support services for women who have received a positive test diagnosis for Down syndrome, or other prenatally or postnatally diagnosed conditions, as well as to provide up-to-date, comprehensive information about life expectancy, development potential, and quality of life for a child born with Down syndrome or other prenatally diagnosed condition; (2) strengthen existing networks of support through a Centers for Disease Control and Prevention patient and provider outreach program; (3) improve available data by incorporating information directly revealed by prenatal or postnatal testing into existing State-based surveillance programs for birth defects and prenatally or postnally diagnosed conditions; and (4) ensure that patients receive up-to-date, scientific information about the accuracy of the test. Mr. Brownback noted that, currently, 90% of children prenatally diagnosed with Down syndrome are aborted. That percentage is similar for children prenatally diagnosed with other conditions such as spina bifida, cystic fibrosis, and dwarfism. |