Legislation sponsored by Assemblymember Karen McMahon (D-Amherst) that will help provide important information to families and parents of infants with Down syndrome was signed into law by Governor Kathy Hochul on Friday.

McMahon’s bill passed both houses of the Legislature with bi-partisan support. It will require that up-to-date and evidence-based information on Down syndrome is made available to pregnant women and parents of infants who test positive for Down syndrome.

According to the Centers for Disease Control and Prevention, about 6,000 babies with Down syndrome are born in the United States each year - roughly one in every 700 births - making Down syndrome the most common chromosomal condition. While prenatal and infant screenings for Down syndrome are well-established practices, many healthcare practitioners may not be equipped with proper, up-to-date and evidence-based information for parents. This legislation will require the New York State Department of Health to develop informational and educational materials to assist new parents and families living with Down syndrome. The materials will then be available on the Department of Health official website. The information, reviewed by medical experts and national Down syndrome organizations, will include:

• Life expectancy
• The clinical course description
• Expected intellectual and functional development
• Available intervention or treatment options
• Information hotlines specific to Down syndrome
• Relevant resource centers or clearinghouses
• National and local Down syndrome organizations
• Any other information deemed necessary

“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. 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. I was honored to sponsor this legislation in the Assembly, and I thank my colleagues for their support and the Governor for signing it into law,” said Assemblymember McMahon.

“This bill has been one of our organization’s top legislative priorities. Knowledge is power, and this legislation will give both knowledge and power to New York families affected by Down syndrome. We are grateful to Assemblywoman Karen McMahon, Senator Ortt and all who have championed this legislation. We also want to thank Governor Hochul for signing the bill into law,” said Mindy Cervoni, President of the Developmental Disabilities Alliance of Western New York.

“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. This is a positive step in the right direction toward ensuring expectant parents are fully supported. The Down syndrome community is so very grateful to Assemblywoman McMahon and Senator Ortt for advocating on our behalf,” said Emily Mondschein, Executive Director of GiGi’s Playhouse Down Syndrome Achievement Centers - Buffalo.