State creates new Down Syndrome Diagnosis Awareness Program

Press Release, State Senator Rob Ortt

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,” Ortt said.

Parents and healthcare 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.

“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,” Ortt said. “I’d also like to thank my colleagues in the senate and assembly for unanimously passing this important piece of legislation – and to Governor Hochul for signing it into law.”

“There is no longer an excuse for outdated, discriminatory information about Down syndrome during diagnosis, when the information now exists for all to access on the Department of Health’s website,” said Emily Mondschein of Gigi’s Playhouse, which provides support and programming for people with Down syndrome and their families. “This is a positive step in the right direction towards ensuring expectant women are fully supported.”

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 Senator Robert Ortt and  Assemblywoman Karen McMahon and all who have championed this legislation, and we thank Governor Hochul for agreeing to sign it.”

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