Just days before New York State ended their legislative session last year, Assemblymember Karen McMahon, with the help of her fellow lawmakers was able to pass a bill she sponsored called “Down Syndrome Awareness” law. McMahon says the law 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.
“Directing the Department of Health to create a Down Syndrome Awareness Program to make sure that physicians had information about Down Syndrome. Specifically clinical course description, life expectancy, expected intellectual and functional development, available intervention or treatment options, information hotline specific to Down Syndrome, relevant resource centers for clearing houses, national and local Down Syndrome organizations, and any other information that the Department of Health would find relevant.”
McMahon mentions the idea for the bill came from Emily Mondschein, Executive Director at GiGi’s Playhouse, a not for profit Down Syndrome Achievement Center in Buffalo. Emily mentioned that when she learned her now nine-year-old son was going to have Down Syndrome, she faced a flurry of discrimination and misinformation.
“She just talked about really bad outcomes for this population. She talked about the only two people that she had delivered that had been born with Down syndrome died by the age of two. She talked about how horrible their family's lives were, how negatively they were impacted by Down syndrome, when in fact, I later came to learn that we have research studies that actually show the positivity around the parents, the caregiver, the individual with Down syndrome. The reports are overwhelmingly positive.”
GiGi’s playhouse is a place for people with Down Syndrome to participate in social events, fitness activities, as well as learning. A few of the students spoke with us on why having a law like this would benefit people with Down Syndrome.
“There’s nothing to fear. There’s nothing to worry about. Yes there could be a lot of disappointment for any kind of disability or condition but if anything it should be worth it,” said Faith Jaromin.
“That fear can go away at some point because you have your family to help you, so they can coach you and support you through it,” said Jacob Stives.
GiGi’s Playhouse will be back in action this Friday in celebration of Down Syndrome Awareness Day.
