Prenatal Testing

Recently, the American College of Obstetricians and Gynecologists recommended that all pregnant women receive prenatal testing for Down syndrome. When Down syndrome is identified during pregnancy, however, the pregnancy termination rate grows to an estimated 90 percent, which leaves those of us who know and work with children with Down syndrome outraged about the effects of increased testing.

We must inform pregnant parents about the potential their children with Down syndrome have before doctors and other professionals encourage them to abort a pregnancy that is otherwise similar to any other healthy pregnancy. To promote such initiatives Senators Sam Brownback, Republican of Kansas, and Edward M. Kennedy, Democrat of Massachusetts, introduced the Prenatally Diagnosed Condition Awareness Act in the 109th Congress. Their bipartisan legislation demonstrates broad political agreement on this issue.

Families are not alone. The National Down Syndrome Congress and the National Down Syndrome Society are working together to expand their First Call program. In First Call, the parents of a newborn or those expecting a baby with Down syndrome are visited by other parents of such delightful children and learn firsthand the joys and challenges that children with Down syndrome bring. New parents can also find other community resources and programs to help their children grow and learn. In every state, early intervention programs are available to children with Down syndrome. Special services and therapies are provided from birth until age 3. At age 3, the public schools provide a free and appropriate public education and other specialized support until the child’s 22nd birthday. As they grow up, children with Down syndrome will find opportunities for work, recreation and worship that were not available two generations ago.


Fifty years ago children with Down syndrome were routinely excluded from public schools, could not play on playgrounds or prepare for jobs. Since then, however, they have made enormous contributions to our society, demonstrating a cardinal rule of life in America: With hard work you can accomplish what you dream. Today individuals with Down syndrome can be found in businesses, nonprofit organizations, community groups and houses of worship. They serve on boards of directors and volunteer alongside their peers without disabilities.

I know a young man with Down syndrome, Troy Daniels, who is both a champion athlete and an accomplished public speaker. He has spoken, with the aid of some assistive technology, to audiences numbering in the thousands, sharing a message of hope, empowerment and accomplishment. He is about nothing if not the possibility of America. I could easily list two dozen more examples.

Across the nation, children with Down syndrome live productive lives, with hopes and dreams, goals, jobs and valued social roles in their communities. I continue to have high hopes that over the next 10 years, our friends who have Down syndrome will be more fully woven into every facet of the community, including the emerging frontier of college programs designed for students with intellectual disabilities. Recently I visited one such program at the College of New Jersey and was delighted to see young adults with Down syndrome studying and learning alongside their classmates without disabilities.

Still, prejudice against people with Down syndrome and with other intellectual disabilities persists. A study conducted by Special Olympics indicates that 60 percent of parents of students without disabilities do not want their own children to attend classes with children who have Down syndrome.

We as a nation can and must do better. As we seek common ground on many issues, can’t we agree that valuing all children is a big step in the right direction? After all, our country was built on the promise of life, liberty and the pursuit of happiness for all, not for some.

Prenatal testing by those with an intention to abort imperfect human beings is a step backward. Science continues to identify causes of human imperfection. Where will it stop? Who will decide which characteristics are allowed and which are not?

There is no justifiable reason for prejudice against people with Down syndrome to continue. Instead, addressing the needs of new parents who have children with disabilities is essential, and we know how to do it. New parents need support groups. They need to understand that their child is not as different as they might first assume. Senators Kennedy and Brownback agree that giving prospective parents accurate and unbiased information about the potential of their children, whether or not their child has a disability, is crucial. Because of the increased emphasis on prenatal testing, the time to pass the Prenatally Diagnosed Condition Awareness Act is now.

The 110th Congress can make its mark with a bold stroke, demonstrating that America is a beacon of human dignity, strong in its collective conviction that all children can grow, learn and develop. Let’s believe in childrenall children.

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10 years 11 months ago
Remarkably, Mrs. Shriver fails to discuss what happens to individuals with developmental disabilities after they age out of school. Saying that they are integrated into the community and live productive lives fails to recognize the reality of adult services in much of the country for those without the assets of a Kennedy. Until realistic life long services are readily available that will support individuals with cognitive disabilities and their families, too many parents-to-be may be tempted to opt for termination. Too often, looking at what actually exists may drive the choice.


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