Expectant parents to get latest, culturally-appropriate information on Down syndrome
BOSTON, June 23, 2012 /PRNewswire-USNewswire/ — Friday was a historic day for people with Down syndrome, their families and those who love them. Just after noon, in the Massachusetts Governor’s chambers, surrounded by legislative leaders, parents of people with Down syndrome and self-advocates, Governor Deval Patrick signed landmark legislation that promises a bright future for the Down syndrome community in the Bay State.
“An Act Relative to Down Syndrome Genetic Test Results,” modeled on the national Kennedy-Brownback bill, is the first state legislation of its kind in the nation. The new law requires the Mass. Department of Public Health to make available to medical providers the latest, culturally-appropriate information about what it means to have a child with Down syndrome and contact information for services to ensure parents have access to necessary supports. The legislation specifically identifies MDSC’s Parent’s First Call Program as a key resource for families, formally recognizing our signature outreach program, a national model in the field.
Given recent scientific developments around prenatal diagnosis, it was critical to pass the legislation. Last fall, the first non-invasive prenatal test for Down syndrome hit the market. Today, there are at least two more. This medical advancement signals a not-far-off future in which expectant parents will routinely receive an accurate prenatal diagnosis for Down syndrome and other chromosomal conditions early in their pregnancy.
What are your thoughts on this bill and the flip side, advanced prenatal testing procedures for Down syndrome?
At the MDSC, we understand parents’ desire to know early if they are having a child with Down syndrome. This respect for the right of expectant parents to have as much information as possible underlies the MDSC’s pro-information position and this legislation. MDSC Executive Director Maureen Gallaghercommented: “With this law, we’ll have the ability to make a profound difference in the way people receive the diagnosis along with appropriate information, resources and supports.”In his remarks, the Governor said the legislation “gives parents additional resources to make informed decisions for their families.” According to Rep. Sannicandro, who sponsored the bill and whose son, David, has Down syndrome, “This bill is about providing the most accurate and up-to-date information about Down syndrome. I am proud to see it signed.”
As we have over the past nearly three decades, the MDSC ensures that all individuals in Massachusettswith Down syndrome are valued, included, and given every opportunity to pursue fulfilling lives.
CONTACT:
Maureen Gallagher 781-248-5949
Joshua Komyerov 617-548-1945
mdsc@mdsc.org
