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.
MDSC’s advocacy in the public policy arena has lead to the passage of numerous bills, including landmark legislation that ensures equal rights, inclusion and support for the Down syndrome community.
At the start of each two-year legislative session, the MDSC’s Government Affairs Committee carefully selects a set of priority bills and secondary support bills for our statewide legislative platform. We believe that the best way to put these bills on legislators’ agendas is for our members to take action and contact their representatives about the issues they care about. You can view the 2023-2024 Legislative Platform here.
National Legislative Advocacy & Platform
The MDSC adopts its federal legislative platform from its national partner, the National Down Syndrome Society. Shaped by self-advocates, families, affiliate leaders and others, the NDSS/MDSC legislative priorities span the life experience of individuals with Down syndrome from birth through adulthood and range in issues from healthcare to asset development.
The current NDSS legislative agenda emphasizes the rights and opportunities of people with Down syndrome in five important public policy arenas: health care and research, education, economic self-sufficiency, community integration, and employment. To learn more about the NDSS’s five-part legislative agenda, click here.
Government Affairs Committee
The primary vehicle for the MDSC’s public policy initiatives is our Government Affairs Committee. The Committee works with the MDSC Executive Director, Management Team, and the MDSC membership to advocate for statewide and national policies that will help the MDSC achieve its mission. 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. Learn more about becoming a legislative advocate here.
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 Committee will review legislative bills and make a recommendation as to the bills that are of the highest priority for the MDSC to advocate for. Working with the MDSC Executive Director, the Committee will make a recommendation of a priority bill and support bills to include in the MDSC Legislative Platform. The Executive Director will submit these recommendations to the MDSC Board of Directors for approval.
Once the Board of Directors has approved the Legislative Platform, the Committee will work closely with the Executive Director, management team and the MDSC membership to advocate for these bills. Advocacy will include the following activities:
Develop relationships with key legislators that can champion the MDSC legislative platform.
Informing the MDSC membership about the legislative priorities and how they can help advocate for these bills through the use of our newsletter, list-serve, and e-newsletter.
Drafting sample letters and advocacy materials for the MDSC membership to use.
Developing testimony and participating in hearings to advocate on behalf of the MDSC’s Legislative Platform.
The Committee will research and develop new tools and systems to build an infrastructure for the MDSC and the Committee’s advocacy efforts. Some of the suggested tools and systems to investigate include Instatrac and Capwiz.
Recruit and train MDSC members in all regions of the Commonwealth to act as a liaison in their local area for timely legislative needs.
Collaborate with other Advocacy groups (i.e. NDSS and The Arc of Massachusetts) to work together on common legislative priorities and to participate in rallies, legislative receptions, and advocacy days, that will advance the MDSC legislative priorities.
Increase the capacity of the Committee through providing in-service training opportunities on various legislative advocacy best practices.
Legislative and Administrative Advocacy 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). DDS is the state agency that provides services for people with disabilities, including those with Down syndrome.
Legislatively, some of our closest allies, including State Senator Karen Spilka, serve on the MDSC’s Honorary Board of Directors, which acts in an advisory capacity to the organization’s official Board of Directors.
Organizational Advocacy Partners
The MDSC partners with state and national disability advocacy groups to advance specific legislation, overall policy initiatives and disability funding priorities. MDSC partners include, but are not limited to:
In the wake of the historic signing of the Higher Education Bill in December 2022, MDSC continued to push for important legislative and policy advances, starting with our top priority Applied Behavioral Analysis (ABA) Therapy Bill. Originally designated a top priority in 2019, the ABA Bill would mandate insurance coverage for what is now known to be a proven intervention. (The majority of families seeking at-home ABA therapy for their child with a single diagnosis of Down syndrome are routinely denied coverage by their insurance health plan.)
In October 2023, we were proud to work with families and partner organizations to provide testimony in support of the ABA Bill at a public hearing at the State House. While ABA stood alone at the top of the list in 2023, MDSC’s Government Affairs Committee approved its new 2-year Statewide Platform that included 21additional support bills in critical policy areas such as education, safety, medical needs, transition and the human services workforce.
Amplifying Self Advocate Voices on the National Stage
On the federal level, 21 MDSC advocates traveled to Washington, D.C. in April 2023 to meet with our Massachusetts congressional delegation for NDSS’s Down Syndrome Advocacy Conference, advocating for critical bills — i.e. ending the practice of paying people with disabilities a sub-minimum wage, and including people with Down syndrome in Alzheimer’s research and providing funding for it. The 8 self advocates in our group — Brian, Jordan, Kate, Matt, Molly, Ned, Peter, and Tucker — stole the show, explaining passionately to lawmakers and aides about why a particular piece of legislation matters to them.
Passing the Higher Education Bill
After passage by the state legislature’s, Governor Baker signed the landmark Higher Education Bill into law, an accomplishment that took 10 years of advocacy. The law promises to remove barriers preventing more members of our community from attending state colleges and universities through the MA Inclusive Concurrent Education Initiative (MAICEI). The first of its kind in the country, the new law means that people with ID/DD or autism who do not pass the standardized MCAS test and do not have a regular high school diploma can still participate as non-matriculating students in college courses with their peers, as well as in extracurricular activities and other aspects of campus life, with supports and services necessary to facilitate inclusion.
In addition to the MCAS provisions, the law means that state colleges and universities will establish guidelines governing their selection of individuals with disabilities as well as course selection. Supports and services to facilitate inclusion will be provided by the local school district, the Massachusetts Rehabilitation Commission, MA Department of Developmental Services, or private funding. The law also codifies the MAICEI grant program and allows special education IEP teams to consider higher education as an option for students with disabilities.
American Rescue Plan Act & Your Next Star Academy Funding
Another major funding/legislative success spanning 2021 and 2022 was the federal American Rescue Plan Act and Economic Development funds that MDSC received to support our Philip Donahue Your Next Star Employment Center. Following Governor Baker’s signing of a $4 billion Covid Relief Bill in late 2021, additional funding was provided in the economic development package approved by the State Legislature and signed by the Governor in the fall of 2022.This critical funding allowed MDSC to further develop and expand our Your Next Star employment initiative.
Thank You Governor Baker
As Governor Baker’s 8-year tenure wrapped up at the end of 2022, we thank him for being a true champion and friend of MDSC, our loved ones with Down syndrome and our families.
Throughout 2021, as the pandemic persisted, so did MDSC’s advocacy efforts. We officially endorsed the National Biomedical Research Act; helped ensure two of the state legislature’s “Workability” Subcommittee final recommendations came to fruition; and, in collaboration with our friends at Northeast Arc and The Arc of Massachusetts, issued a joint statement about best practices for emergency response for people with ID/DD.
In addition, we had the following successes:
Launch of MDSC’s Legislative Action Center
Early in 2021, in conjunction with our new website, MDSC launched our new Legislative Action Center, one of MDSC four Centers of Excellence. The Action Center is a one-stop shop for finding information about MDSC’s legislative priorities and for taking action to make a difference.
American Rescue Plan Act & Your Next Star Academy Funding
In late 2021, Governor Charlie Baker signed a $4 billion Covid Relief Bill, which put to use a portion of Massachusetts’ direct federal aid from the American Rescue Plan Act (ARPA). The funding that Governor Baker approved included a $500,000 earmark for MDSC’s Your Next Star Employment Academy, critical funding that allowed MDSC to further develop and expand our employment initiative with career-building services for individuals with Down syndrome.
Campaign to End Subminimum Wages for People with Disabilities
Throughout the year, MDSC was hard at work on several fronts to bring an end once and for all to the outdated practice of paying people with disabilities subminimum wages. Over the summer, we worked with our partners at NDSS to have MDSC Legislative Specialist John Anton testify before the U.S. Committee on Education & Labor in support of the federal Transformation to Competitive Integrated Employment Act, which would eliminate the federal waivers that allow this New Deal-era practice to continue.
Testifying for Higher Education Bill
MDSC made significant strides raising the profile and making the case for passage of our top priority Higher Education” Bill. The bill would remove barriers that preclude many people with intellectual disabilities (ID) 18-22 and older adults from participating in higher education. In the wake of the hearing, stories about the bill and larger efforts to give people with Down syndrome and other disabilities higher education opportunities were covered in the Boston Globe (editorial), WBUR and The Hill.
Testifying for Applied Behavioral Analysis (ABA) Bill
In the fall of 2021, MDSC was proud to make a strong case for another of MDSC’s top priority bills, An Act regarding Applied Behavioral Analysis for Down Syndrome, before the state’s Joint Committee on Financial Services. Testifying on behalf of our entire community were Leah Campbell, Amy Genest & Peter Genest, Amy Golden Feinberg & Jeff Feinberg, MaryBeth Rajczewski, Sarah Cullen, Dr. Brian Skotko, Dr. Nicole Baumer, Angela Lombardo, Clorinda Cottrell, and Representative Jack Lewis. If passed, the bill requires private insurers and MassHealth to cover the cost of in-home ABA therapy for children with a single diagnosis of Down syndrome, rather than only those with autism or a dual diagnosis of autism and Down syndrome.
COVID-19 Pandemic
When an unprecedented global pandemic struck in the Spring of 2020, MDSC was in the midst of laying the groundwork for its annual Advocacy Day at the State House. For the first time in 7 years, MDSC’s day to connect with legislators was cancelled. Instead, throughout 2020, MDSC shifted gears to strengthening collaborations with local and national disability partner organizations as well as legislative leaders to address critical policy concerns in a time of challenge for so many individuals and the Down syndrome community as a whole.
This includes everything from Covid Relief funding to hospital visitation policies, housing and education advocacy, employment as well as vaccine access — all to ensure that people with Down syndrome are not disproportionately affected during these difficult times for everyone.
Efforts have included working with the MDSC Medical & Scientific Advisory Council to share helpful information about the Covid-19 vaccine, advocating for people with Down syndrome and other intellectual and developmental disabilities in congregate care or community-based day program settings, and requesting that people with Down syndrome over 40 years of age receive top priority for the vaccine.
John Anton Testifies for Fair Wages at US Commission on Civil Rights
In 2019, we were proud to collaborate with leaders across the nation to advocate for national policies that will ensure that individuals with Down syndrome and their families don’t lose access to critical benefits that are needed to lead inclusive fulfilling lives. In November, MDSC Legislative Specialist/ NDSS Ambassador John Anton traveled to Washington, D.C. to provide powerful testimony at a US Commission on Civil Rights briefing to advocate for fair pay for people with disabilities. John’s speech at the public hearing on Capitol Hill was titled, Subminimum Wages: Impacts on the Civil Rights of People with Disabilities. The hearing examined the exemption under the Fair Labor Standards Act that permits employers to pay less than the minimum wage to individuals with disabilities. John shared his own personal experience getting paid a sub-minimum wage in a sheltered workshop before quitting. “For many years’ people told me I could not do what I wanted, but I persisted. My parents were even surprised at how high my goals were. Look at me now!!” We appreciate John representing the MDSC, the NDSS, and the Down Syndrome community through your testimony. Watch John’s Testimony
Governor Charlie Baker Attends Down Syndrome Advocacy Day at the State House for 1st time
In May, we were honored when Governor Charlie Baker was a special guest at our 5th Annual Advocacy Day to accept our Legislative Champion of the Year Award. Through his support and initiatives, people with disabilities in Massachusetts have been afforded real opportunities to work, build savings and have critical protections.
Governor Baker signed the landmark Organ Transplant Bill into law, provided additional funding for the Turning 22 transition program, and provided his vital backing for the landmark ABLE Act, allowing people with disabilities to open ABLE accounts and finally save for their future without losing their important benefits.
Executive Director Maureen Gallagher Named National Down Syndrome Society (NDSS) Ambassador of the Year
At the 2017 Buddy Walk on Washington, Congressman Joe Kennedy III presented the MDSC’s Executive Director Maureen Gallagher with the NDSS Champion of Change Award, honoring her leadership and vision and the MDSC’s groundbreaking advocacy efforts.
Congressman Kennedy said it best: “[Maureen] isn’t here today because it’s her job. She’s here today because she believes in the abilities of every single person in this room. She wants to make this nation, this world a little kinder, a little fairer for those with Down syndrome. She’s here because this fight matters and we will never again allow people with Down syndrome to be overlooked and forgotten.”
An Act Concerning Nondiscrimination in Organ Transplantation Becomes Law
On December 2nd, 2016, Governor Charlie Baker signed the MDSC’s Organ Transplant Bill into law. This priority bill, sponsored by Representative James Cantwell, prevents discrimination against anyone with an intellectual or developmental disability in need of an organ transplant, ensuring that all people with Down syndrome have access to the live-saving treatments they need.
ABLE Act Becomes Law
The landmark ABLE Act allows families to save for their loved ones with disabilities without being punished. Since the passing of the act in 2014 (our lobbying led to the entire Massachusetts congressional delegation sponsoring the bill), implementation of the ABLE Act remains a top national priority. In the fall of 2015, MDSC submitted comments to the federal government advocating for provisions to enhance the flexibility of ABLE accounts for self-advocates and their families. Soon after, the IRS issued interim guidance that will make it easier for state administrators to establish and administer ABLE programs in an expedient and efficient manner.
In the Spring of 2014, MDSC celebrated the launch of tax-advantaged ABLE accounts for individuals with disabilities in Massachusetts at the State House. Going forward, people with Down syndrome in Massachusetts and the rest of the country will be able to work and save for their future without losing access to important benefits.
See the complete communication about the Massachusetts passage of the ABLE Act from our Executive Director here.
The Real Lives Bill, sponsored by Representative Tim Sannicandro, streamlines the funding mechanism for people with disabilities receiving state support and allow families greater control and flexibility over their supports.
Learn more about the Massachusetts Department of Developmental Services’ Self-Determination Advisory Board (SDAB), which executes and reviews progress made on the Real Lives Bill’s agenda.
An Act to Require National Background Checks Becomes Law
The National Background Check (NBC) Bill requires employees working with persons served by the Massachusetts Department of Developmental Services (DDS) to undergo federal criminal background checks in addition to the state checks that are already mandatory.
Read Executive Director Maureen Gallagher’s testimony in support of the NBC Bill here.
See the complete communication about the passage of the Real Lives Bill and the National Background Check Bill from our Executive Director here.
An Act Relative to Down Syndrome Genetic Test Results Becomes Law
This law, sponsored by Representative Tom Sannicandro and then State Senator Katherine Clark, 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 Parents First Call Program as a key resource for these families, formally recognizing our signature outreach program, which is a national model in the field. Given recent scientific developments around prenatal diagnosis, it was critical to get a bill like this on the books.
See the complete communication about the passage of the Prenatal Bill from our Executive Director here.
Watch CBS coverage and TIME magazine’s article on the impact of advances in prenatal testing on the Down syndrome community here.
MDSC is honored with the National Down Syndrome Society’s Advocacy Organization of the Year Award.
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