While Down syndrome once relegated children to life in institutions, "mainstreaming" has led to new generations raised among the general population. That trend, along with better medical care, has seen the average life expectancy, which was nine years in 1929, rise dramatically, according to the National Institute of Child Health and Human Development. Today, while a majority of Down syndrome pregnancies result in miscarriage, those babies who survive often live into their fifties, according to the National Down Syndrome Society.
Advocacy groups credit the TV program "Life Goes On," which first aired in 1989 and whose main character, Corky, was played by an actor with Down syndrome, with helping to put a positive face on a condition found in nearly 400,000 Americans.
Meanwhile, the growth of prenatal screening has focused attention on how diagnoses are conveyed.
"One of the dangers of the expansion of prenatal genetic testing technologies is that expecting parents will experience pressures to terminate their pregnancies from medical professionals and insurers," Andrew J. Imparato, president of the American Association of People With Disabilities, warned in testimony to a congressional committee last November. "Doctors may want to avoid a complicated delivery, and insurers may want to avoid expenses associated with the child's disability."
Crocker, who helped guide Skotko's project, agrees there is a need for greater sensitivity.
"This is a crucial moment in the life of a young family and should be handled with the utmost tenderness and support," he said, but he worried that efforts to address the issue will get caught up in politics.
Noting that an early version of the Brownback-Kennedy bill included penalties of up to $100,000 for doctors who did not provide sufficient support and information to parents, Crocker said, "I got the sense that this was an attempt to address our societal dilemma. It made my hair stand up."
As a matter of policy, the National Down Syndrome Society and the National Down Syndrome Congress -- the nation's two largest Down advocacy groups -- take no position on the abortion question, and neither has endorsed the bill. In a joint statement, they drew attention to four "concerns about specific elements" of the measure, including requirements for statistical reporting that raised privacy concerns.
Several controversial provisions were stripped from the bill by senators who, on many other issues, find themselves on opposite ends of the political spectrum.
Katy French, an aide to Brownback, who opposes abortion rights, described the legislation as "a pro-life bill" and touted the collaboration with Kennedy as a "a great area of common ground that we haven't seen in the past." Laura Capps, communications director for Kennedy -- whose sister Eunice Kennedy Shriver founded the Special Olympics for disabled people, and whose late sister Rosemary had mental disabilities -- called the newfound common ground a "positive sign."
"Senator Kennedy is strongly pro-choice, but has also long been an advocate for the disabled and believes abortion should be rare," Capps said. "If this legislation helps women make better decisions, he's all for that."
Abortion opponents say the bill would reduce the number of pregnancies ended because of prenatal diagnoses. They argue that prenatal tests are prone to errors and point to waiting lists of people willing to adopt disabled children.
