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Photo: Eric Haynes / Governor's Office
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Dear MDSC Member,
Today was truly an historic day for people with Down syndrome, their families and those who love them in Massachusetts.
Just after noon, in the Governor's chambers of the State House, surrounded by more than a dozen legislative leaders, parents of people with Down syndrome and self-advocates, Governor Patrick signed landmark legislation that promises to bolster a bright future for the Down syndrome community in the Bay State.
An Act Relative to Down Syndrome Genetic Test Results (H3825), modeled on the national Kennedy-Brownback bill, will have a tremendous impact for decades to come.
The new law mandates that new or expectant parents of children with Down syndrome are given the latest, culturally-appropriate information about what it means to have a child with Down syndrome and contact information for services to ensure they have access to the supports that every family in their position needs. The legislation specifically identifies the MDSC's Parent's First Call Program as a key resource for these families, formally recognizing our signature outreach program, which is a national model in the field.
The bill, the first state legislation of its kind in the nation, was sponsored by Rep. Tom Sannicandro of Ashland, whose son David has Down syndrome and Senator Katherine Clark of Melrose. Both have been tireless champions of good disability policy. Given recent scientific developments around prenatal diagnosis, it was critical to get a bill like this on the books.
Today was a joyous day at the State House as you can tell from the photos and videos (See Governor Patrick, Lt. Governor Murray and Rep. Sannicandro's remarks on our YouTube page.) The future is indeed bright for the Down syndrome community in Massachusetts.
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New Science
As we reported last fall, the San Diego-based biotech company Sequenom released the first non-invasive prenatal test for Down syndrome, piloting it in 20 cities in the United State. This advancement was not unexpected, but it was unprecedented. It signaled 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.
Today, there are at least two other such non-invasive prenatal tests on the market, all of which are being used in a limited fashion throughout the country and internationally. These tests are not yet routine for all pregnant moms, but we know they will be within the next decade if not sooner.
At the MDSC, we understand that parents want to know as early as possible whether they are having a child with Down syndrome. In fact, it is this very respect for the right of expectant parents to have as much information as possible that underlies our position and this legislation.
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The Bill
According to the new law, medical professionals are required to give parents who receive a prenatal or postnatal diagnosis "up-to-date, evidence-based, written information about Down syndrome that has been reviewed by medical experts and national Down syndrome organizations."
The written information provided must include "physical, developmental, educational, and psychosocial outcomes, life expectancy, clinical course, and intellectual and functional development and treatment options." All of this information must be culturally and linguistically appropriate.
Furthermore, the law requires that these parents are given contact information for the MDSC's Parent's First Call Program and support services, "including information hotlines specific to Down syndrome, resource centers or clearinghouses, national and local Down syndrome organizations such as the Massachusetts Down Syndrome Congress, and other education and support programs."
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Courageous Leaders & Everyday Heroes
 | | Lauren and Lucy Falcone were among those who attended the ceremony today. |
We owe a great deal of gratitude to Governor Patrick and his Administration, including Secretary of Health & Human Services Commissioner Judy Ann Bigby, Department of Developmental Services Commissioner Elin Howe and Department of Public Health Commissioner John Auerbach; Lieutenant Governor Tim Murray, Senate President Therese Murray and Speaker of the House Robert DeLeo; and, of course, Rep. Sannicandro and Sen. Clark.
Given the sensitive nature of this legislation, a lot happened behind the scenes as well. I want to publicly thank our Board of Directors, Honorary Board of Directors, Legislative Advocacy Task Force, Management Team, and MDSC members who we reached out to for help and advocacy. Special thanks to Jane Lane, Jim Shay, Kristin Britton, Dave Falcone, Katherine Craven, Melanie Perkins McLaughlin and Laura Noble, all of whom championed the bill for us.
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More in the Works
This weekend, we hope you will revel with us in this particular momentous occasion. Then, by early next week, we will be on to other projects. Next Wednesday at 7:30 p.m., Channel 5's news magazine show "Chronicle" will feature the MDSC, our First Call program and our members in a program about how the lives of people with Down syndrome has changed. Here's how the promo puts it: "In the last three decades, the outlook has changed dramatically for people born with Down: they live longer, have more independence, and participate more fully in society."
 | | Melanie Perkins McLaughlin, her daughter Gracie, and MDSC Advocacy Specialist John Anton were at the bill signing today at the Governor's Office. All of them will be featured in a show next Wednesday on Channel 5's "Chronicle" |
Legislatively our work continues as well as we push for another of our key state bills to pass this session. The Real Lives Bill, also sponsored by Rep. Sannicandro, is heading to the Committee on Third Reading, we hope, on its way to passage. The bill gives people with disabilities in Massachusetts a much greater degree of autonomy and control over their finances and services.
We will keep you updated on that in the weeks ahead. For now, I hope you will join me in celebrating this remarkable moment in the history of Down syndrome advocacy!
Sincerely,
Maureen Gallagher, Executive Director
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