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The Massachusetts Down Syndrome Congress is a national leader in the disability policy arena. Through partnerships with legislators, their constituents and other disability organizations, we work to advance legislation and other policies that benefit people with Down syndrome and their families.
The MDSC has established itself in recent years as a major player in state disability policy, leading the charge or lending a critical hand to pass key legislation - the Prenatal Testing Bill, Real Lives Bill and National Background Check Bill.
Our Advocacy Day, established in 2014, has been central to bringing our priority bills to the attention of State House leaders and garnering their support. Save the date for our 3rd Annual Advocacy Day on May 18, where we will raise awareness with your legislators about our two new priority bills as well as critical funding needs.
On the federa level, the MDSC was a leader, securing the support of the entire Massachusetts congressional delegation for the landmark ABLE Act, which passed in 2014, and allows families to save for their loved ones with disabilities without being punished.
Government Affairs Committee
The primary vehicle for the MDSC’s public policy initiatives is our Government Affairs Committee. With broad statewide representation, the Committee’s primary objective is to mobilize the MDSC membership to advocate on behalf of the entire Down syndrome community.
The Committee does this by providing the following: outreach to members, training opportunities, the chance to testify at public hearings, and templates to use in advocacy efforts. The Committee also develops its own testimony, recruits members for public rallies, vigils, etc., and organizes and participates in meetings with policy makers both in the Legislature and the Administration.
The GA Committee appreciates your feedback, and is often looking for new members. Contact us at email@example.com.
Statewide Policy Initiatives
The blueprint for our statewide public policy work is our state platform, a slate of about 12 bills selected annually by the Legislative Advocacy Task Force (pending board approval) from among the scores of disability-related bills filed in the Legislature.
We are proud to have worked with partners in the legislature and governor's office to pass several major bills in recent years. This includes our first legislative victory in June 2012, the passage of the landmark Prenatal Testing Bill. At the end of the last session (2013- 2014), we helped pass two other pieces of priority legislation - the National Background Check Bill and the Real Lives Bill - both of which will benefit people with Down syndrome and other disabilities for the years to come.
Read more about these bills below:
- HB4327 An Act to require national background checks. The National Background Check (NBC) Bill will require employees working with people with disabilities in positions that receive state funding to undergo federal criminal background checks in addition to the state checks that are already mandatory.
- HB4237 An Act Relative to Real LIves (Lead Sponsor Representative Tom Sannicandro) The Real Lives Bill willstreamline the funding mechanism for people with disabilities receiving state support and allow families greater control and flexibility over their supports
- An Act Relative to Down Syndrome Genetic Test Results (H3825) Modeled on the national Kennedy-Brownback bill, this 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. See the complete communication about the passage of the Prenatal Bill from our Executive Director here.
The future is indeed bright for the Down syndrome community in Massachusetts.
Stay tuned for the MDSC's priority statewide bills in the General Assembly's 2015/16 legislative session. To find your state legislator, visit the Massachusetts Legislature’s website.
Buddy Walk on Washington and National Platform
Each February, our national partner, the National Down Syndrome Society brings together hundreds of advocates from across the nation for two-day advocacy event, the Buddy Walk on Washington.
The event, which includes trainings, awards and speeches, and visits to Congressional leaders, serves primarily as an opportunity for the Down syndrome community to interact directly with elected officials and garner their support for key national policy goals, including improvements to education, research and healthcare for people with Down syndrome.
Each year, the MDSC has a significant presence at the Buddy Walk on Washington. Furthermore, in advance of the Buddy Walk, the NDSS publishes its federal policy priorities, which the MDSC adopts as its federal platform.
Legislative and Administrative Partners
The MDSC partners closely with dozens of legislators and administration officials, including officials at the state Executive Office of Health & Human Services, which includes the Department of Developmental Services. DDS is the state agency that provides services for people with disabilities, including those with Down syndrome.
Legislatively, some of our closest allies serve on the MDSC’s Honorary Board of Directors, which acts in an advisory capacity to the organization’s official Board of Directors. Honorary Board members include:
- Representative Tom Sannicandro
- State Senator Karen Spilka
The MDSC recognizes the value in reaching out to all legislators regardless of their past support of issues important to the Down syndrome community. Please make every effort to connect personally and repeatedly with your elected officials.
To find your state legislator, visit the Massachusetts Legislature’s website
The MDSC partners with state and national disability advocacy groups to advance specific legislation, overall policy initiatives and disability funding priorities.
In 2008-2009, the MDSC joined a cross-disability effort to develop a comprehensive 21st Century Disability Policy. Known as the Massachusetts Alliance for a 21st Century Disability Policy, the coalition crafting the manuscript included The Arc of Massachusetts (The Arc), Massachusetts Families Organizing for Change (MFOFC), Massachusetts Advocates Standing Strong (MASS), Massachusetts Developmental Disabilities Council (MDDC), and Advocates for Autism of Massachusetts (AFAM).
Other MDSC partners include, but are not limited to:
- National Down Syndrome Congress
- National Down Syndrome Society
- Massachusetts Disabled Persons Protection Commission
- Disability Law Center
- Massachusetts Commission Against Discrimination
- Federation for Children with Special Needs
- Massachusetts Advocates for Children
- The Arc of Massachusetts
- Massachusetts Advocates Standing Strong
- Mass Families Organizing for Change
- Massachusetts Developmental Disabilities Council