MADDEN-SWEENEY BILL TO PROVIDE INFORMATION TO PARENTS REGARDING DOWN SYNDROME APPROVED

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 TRENTON – Legislation sponsored by Senator Fred H. Madden Jr. and Senate President Steve Sweeney to require information regarding Down syndrome be provided to parents who receive a prenatal or postnatal diagnosis was approved today by the Senate.

 “Parents who receive a medical diagnosis for their child can be overwhelmed and unsure about where to get accurate and up-to-date information about the condition. By requiring health professionals who are providing a diagnosis of Down syndrome to also give parents informational resources, we will better ensure they are prepared to make decisions regarding treatment and care that will allow their child to reach their full potential,” said Senator Madden, vice chair of the Senate Health, Human Services and Senior Citizens Committee.

“There is nothing worse than being given a diagnosis for your child that you don’t understand,” said Senate President Sweeney. “When I learned of Lauren’s diagnosis, I didn’t know what Down syndrome was or where to turn for help. Giving parents accurate information about what to expect and treatment options will help provide some of the tools they need to ensure their child lives a healthy and active life.”

Senate President Sweeney’s daughter, Lauren, was born with Down syndrome. She weighed two pounds and spent 75 days in a neonatal unit before being released. Senator Sweeney’s experience as a new father of a child with a disability was the reason he entered public service. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21, according to the National Down Syndrome Society. One in every 691 babies in the United States is born with Down syndrome, making Down syndrome the most common genetic condition. Approximately 400,000 Americans have Down syndrome and about 6,000 babies with Down syndrome are born in the United States each year.

The bill (S475) would require the health care professional providing a diagnosis of Down syndrome to any person who renders prenatal care, postnatal care, or genetic counseling, to provide the parents with the following:  (1) up-to-date, evidence-based, written information about Down syndrome that has been reviewed by medical experts and national Down syndrome organizations, including physical developmental, educational, and psychosocial outcomes; (2) life expectancy, clinical course, and intellectual and functional development and treatment options; and (3) contact information regarding telephone and support services, including information hotlines specific to Down syndrome, resource centers, and other education and support programs. The bill requires that the information should be available in English and Spanish and in a manner that is easily understandable for women receiving a positive prenatal diagnosis or for the family of a child receiving a postnatal diagnosis of Down syndrome. The information must also be available on the Department of Health website.

The bill was approved by a vote of 38-0. It next heads to the Assembly for consideration.