NY governor signs bill to give families accurate information with Down syndrome diagnosis

New York Governor Kathy Hochul signed the Down Syndrome Awareness Bill into law on Friday, which is intended to provide more support and resources to families who receive a Down syndrome diagnosis.

The bill, which received bi-partisan support, was sponsored by Assembly member Karen McMahon. It requires the New York State Department of Health to create a Down syndrome awareness program offering up-to-date educational information and materials to parents who receive a prenatal Down syndrome diagnosis and to families living with Down syndrome.

According to a press release from McMahon’s office, some of the information offered to families under the new bill will include any intervention or treatment options, Down syndrome hotline information, resources available, National and local Down syndrome organizations, life expectancy, expected intellectual and functional development, and a clinical course description.

“While the numbers indicate that Down syndrome is the most common chromosomal condition in the United States, and screening is a common practice, a positive diagnosis can be an uncertain and overwhelming time in the lives of new parents,” McMahon said in a statement. “This law will ensure families have full access to the best medical information available, connect them with resources, and reassure them that individuals born with Down syndrome can lead meaningful and productive lives.”

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The bill was created in part thanks to advocacy from Emily Mondschein, Executive Director of Gigi’s Playhouse in Buffalo. Gigi’s Playhouse. Mondschein told WKBW she had a very negative experience when a doctor told her her son Paul had Down syndrome.

“I see so many expecting women or caregivers coming in and so many of them are just broken by the news they’re getting, they’re grieving and so sad, and they’re being told information that is just in 2024 absurd. So this legislation takes the guesswork out of it,” said Mondschein. “It feels like justice is starting to happen,” she added.

The Developmental Disabilities Alliance of Western New York also praised the new law. The organization’s president, Mindy Cervoni, said, “There is no longer an excuse for outdated, discriminatory information about Down syndrome during diagnosis, when the information now exists for all to access on the Department of Health’s website.”

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