Ortt commends creation of Down syndrome diagnosis awareness program

Submitted by the Office of New York State Sen. Rob Ortt

With the signing of Senate bill S.593A, New York families will have much easier access to Down syndrome resources with the creation of the Down syndrome diagnosis awareness program.

“This is a big win for parents and advocates who have been working tirelessly to get more resources relating to Down syndrome,” New York State Sen. Rob Ortt said. “Thank you to the dedicated staff at GiGi’s Playhouse – especially Emily Mondschein for her tenacious efforts behind the scenes in helping create this bill and championing it in the Legislature. I’d also like to thank my colleagues in the senate and assembly for unanimously passing this important piece of legislation – and to Gov. Hochul for signing it into law.”

Parents and health care providers will now have access to up-to-date, evidence-based information about Down syndrome, including expected physical, developmental, education and psychosocial outcomes. The program will also include information on life expectancy, the clinical course description, expected intellectual and functional development, and available intervention and treatment options.

Resources such as information hotlines specific to Down syndrome, local and national Down syndrome organizations, relevant resource centers and clearinghouses, and any other information deemed relevant by the health commissioner will be provided electronically through the department’s website.

“There is no longer an excuse for outdated, discriminatory information about Down syndrome during diagnosis, when the information now exists for all to access on the Department of Health's website,” Mondschein said. “This is a positive step in the right direction towards ensuring expectant women are fully supported. The Down syndrome community is so very grateful to Sen. Ortt and Assemblywoman (Karen) McMahon and for advocating on our behalf!”

“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. “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.”

Mindy Cervoni, president of the Developmental Disabilities Alliance of Western New York, said, "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 Sen. Robert Ortt and Assemblywoman Karen McMahon and all who have championed this legislation, and we thank Gov. Hochul for agreeing to sign it."

Senate bill S.593A will go into effect in 180 days from its signing.