Assemblymember McMahon Introduces Legislation to Require Information on Down Syndrome be Provided by Healthcare Practitioners

Bill ensures up-to-date, evidence-based information is provided to parents

October is Down Syndrome Awareness Month, and with the goal of acceptance and inclusion in mind, NYS Assemblymember Karen M. McMahon (D-Amherst) announced legislation aimed at increasing knowledge and understanding of Down syndrome.

Down syndrome is the most common chromosomal condition in the United States, with about 6,000 new cases, or 1 in every 700 births, each year.[1] While prenatal and infant screenings for Down syndrome are well-established practices, healthcare practitioners who provide such screenings may not have up-to-date or evidence-based information on the condition to provide to pregnant women and parents of children with Down syndrome.

The bill (A.8141/S.6867-A) was introduced in the Assembly by McMahon, a member of the Assembly Committee on People with Disabilities, and in the Senate by Senator John W. Mannion (D-Geddes), chair of the Senate Disabilities Committee. The legislation would require a healthcare practitioner to provide information, reviewed by medical experts and national Down syndrome groups, to parents when a prenatal or infant screening results in a positive diagnosis of Down syndrome. This information would include: expected developmental, educational, and psychosocial outcomes, life expectancy, clinical course description, expected intellectual and functional development, treatment options, and contact information for not-for-profit organizations for further information and support.

“Despite our increased awareness of Down syndrome, a positive diagnosis can be an uncertain and stressful experience for expectant or new parents,” said Assemblymember McMahon. “This legislation will ensure that parents have full access to the best medical information available and will connect parents of a child with Down syndrome to expert resources for support. I’m proud to have introduced this legislation, and I look forward to its passage.”

"As we mark Down Syndrome Awareness Month, we will continue to work to end the stigma while recognizing the wonderful accomplishments and contributions of our family, friends, and neighbors with Down Syndrome,” said Senator Mannion. “This legislation ensures that parents who may be having a child with Down syndrome are connected to New York's many services and resources."

"This bill is so important because it will ensure that much needed support and education is provided for women and families who have received a diagnosis of Down syndrome," said Emily Mondschein, Executive Director of GiGi’s Playhouse - Buffalo.

The bill is currently being considered by the Assembly Health Committee and Senate Disabilities Committee.