Dear Joshua,

At MDSC, we have been proud to stand at the forefront of disability policy advocacy both locally and federally, establishing ourselves as a national leader especially over the past two decades in the disability policy arena.

Together, we have achieved remarkable success, passing more than half a dozen landmark laws that have made tangible differences in the lives of individuals with Down syndrome and their families.

We have done this through a combination of building strategic relationships with policymakers, mobilizing our dedicated membership, and collaborating with disability advocacy partners. We couldn't do any of it without your support.

Today, as we face unprecedented threats to disability services and supports, I am proud to share below the various ways that we at MDSC are advocating both statewide and federally and how you can help us with this critical work.

Together, let’s continue to fight to ensure that the voices of our self advocates and families are heard, and that our governments' policies and funding meet the needs of our community.

NDSS ADVOCACY CONFERENCE A POWERFUL MDSC PRESENCE

MDSC's 17-strong delegation of advocates who advocated on Capitol Hill during NDSS's Advocacy Conference included self advocates, their parents, grandparents and MDSC team members.

On the federal level, nothing exemplifies our ongoing commitment to advocacy more than our recent trip to Washington, DC, for the National Down Syndrome Society's Down Syndrome Advocacy Conference.

From April 28-30, 17 passionate MDSC advocates joined forces with over 400 others from across the country to advance critical policies affecting our loved ones with Down syndrome. We are deeply grateful to the NDSS for bringing this national coalition together on Capitol Hill so that federal legislators can hear directly from those most affected by the policies they create.

Read below for all the details about this trip as well as our national policy priorities and our 2025-2026 Statewide Legislative Platform.

VOICES THAT MAKE A DIFFERENCE SELF ADVOCATES LEADING THE WAY

There is no testimony more powerful than our MDSC self advocates and their families sharing their stories with lawmakers and their aides to make the case for how federal policies and funding directly impacts their lives. This was again the case on Capitol Hill, where our MDSC delegation included five incredible self-advocates as well as parents, grandparents, and siblings.

Our self-advocates in particular — Ned, Peter, Molly, John and Mia — truly shined, as they shared their personal experiences, including their dreams, challenges, accomplishments, and ongoing needs, especially as it relates to our national priorities. Their energy, passion, and commitment were felt throughout the entire conference, and especially during meetings with lawmakers and aides.

We want to extend our sincere congratulations to our friend Damon Kruppa, Director of Special Events & Engagement at Northeast Arc. On day two of the conference, Damon was named NDSS's 2025 Stephen Beck Jr Advocate of the Year for his advocacy and leadership, especially in the realm of disability employment. Damon and his family were proud members of our MDSC delegation, and Damon said he was especially proud to have his sister Mia introduce and present him with the award on stage.

TAKE ACTION ON OUR FEDERAL POLICY PRIORITIES

During our group's time on Capitol Hill, we met with the offices of the majority of Massachusetts' U.S. Representatives as well as both U.S. Senators or their aides.

At each meeting, we advocated for critical federal policies and funding needs shared by both NDSS and MDSC. As usual, we are lucky and grateful that our Massachusetts Congressional delegation has historically and continues to be extremely receptive to our legislative agenda and requests.

Still, given the breadth of issues in front of them, it is imperative that we remind our lawmakers to keep our disability policy priorities at the top of their list. You can make a difference below by emailing your federal legislators to take action on several of these federal priorities:

The Charlotte Woodward Organ Transplant Discrimination Prevention Act (H.R. 1520) Named after NDSS staff member, self-advocate, and transplant recipient, Charlotte Woodward, this bill would prevent discrimination based on disability in the organ transplant system. (Note: Similar protections have already been in place in Massachusetts since 2016, when Governor Baker signed MDSC's groundbreaking Organ Transplant Non-discrimination Bill into law. This congressional bill would bring these same protections to the national level.)

The Ensuring Nationwide Access to a Better Life Experience Act (S. 627 / H.R. 1436) The "ENABLE" Act would make permanent three important provisions of ABLE accounts that would otherwise expire in 2025. Without the permanent extension of these provisions, individuals with disabilities would face more limited opportunities to save for their independence and futures.

Protecting Medicaid Medicaid is a government program that provides free or low-cost health insurance to eligible individuals, including individuals with Down syndrome. It covers essential medical services like doctor visits, hospital stays, and prescriptions. It is also the only payer of Home and Community-Based Services (HCBS) and can be used to cover necessary therapies and interventions provided in a school setting for students with disabilities, such as speech therapy, occupational therapy, and more.

Protecting Access to High Quality Special Education The Individuals with Disabilities Education Act (IDEA) ensures that students with certain disabilities, including Down syndrome, have access to a free appropriate public education (FAPE). The Department of Education plays a key role in implementing this by allocating grants to states, overseeing compliance, and offering technical assistance to state and local education agencies. To safeguard the continued provision of special education services for students with Down syndrome, NDSS and MDSC are focused on keeping special education programs within the Department of Education while continuing to advocate for the full funding of IDEA.

Benefits Reform Many individuals with Down syndrome rely on public benefits programs such as Medicaid and Supplemental Security Income (SSI). However, these individuals also face several barriers in maintaining eligibility for and access to these critical benefits, potentially jeopardizing their financial security or access to quality care. There are several priorities that would ensure public benefits are more accessible to the disability community. These include ensuring the Home and Community-Based Services (HCBS) Waiver program is portable across states, expanding the HCBS workforce, reforming Supplemental Security Income (SSI) asset limitations, and eliminating the SSI marriage penalty.

We also advocated for the Inclusion of the Down Syndrome Community in Alzheimer’s Disease Initiatives. Given the genetic connection between Down syndrome and Alzheimer’s disease, it is imperative that the Down syndrome community is included in all federal initiatives related to Alzheimer’s disease. We are dedicated to ensuring individuals with Down syndrome have their say in Alzheimer’s related clinical studies, initiatives, and legislation.

You can learn more about MDSC's national policy priorities by reviewing our MDSC 2025 NDSS Advocacy Day Policy Priorities Talking Points.

THANK YOU FOR TAKING ACTION TODAY TO SHARE YOUR STORY AND LET YOUR POLICY MAKERS KNOW WHAT’S IMPORTANT TO YOU!!!

STATEWIDE LEGISLATIVE UPDATES FROM PASSING ABA THERAPY BILL TO DRAFTING A NEW LEGISLATIVE PLATFORM

With the passage of our top-priority Applied Behavioral Analysis (ABA) Therapy Bill at the close of last year's legislative session, MDSC has passed more than half a dozen landmark laws over the past 13 years, each making a significant difference in the lives of our loves ones with Down syndrome. In Massachusetts, this includes the Down Syndrome Information Act, National Background Check Bill, Real Lives Bill, Organ Transplant Non-Discrimination Bill, and Higher Education Bil. On a federal level, we were proud to help our federal partners pass the ABLE Act, then work locally to make MA one of the first states to implement it.

Now, with the State Legislature's new two-year legislative cycle underway, MDSC's Government Affairs Committee has developed a draft of our new 2025-26 MDSC Statewide Legislative Platform. The platform, which last session included 22 bills, covers critical policy priorities in areas like healthcare, education, employment, workforce development, and more.

Stay tuned for more on our new Statewide Legislative Platform and how you can support our advocacy efforts here in Massachusetts.  

THANK YOU FOR YOUR ADVOCACY WE COULDN'T DO WHAT WE DO WITHOUT YOU

Thank you for being the driving force behind MDSC’s legislative successes. During these particularly challenging times, your engagement is critical to helping ensure that individuals with Down syndrome and their families have every opportunity to live meaningful, fulfilling lives.

As mentioned above, MDSC's state-of-the-art Legislative Action Center — one of four Centers of Excellence — has been an indispensable tool for our advocacy efforts. A "one-stop advocacy shop," the Action Center houses all of our Action Alert campaigns, as well as detailed information about our Public Policy Efforts, Past MDSC Accomplishments, Testimonials on MDSC Bills, Tracking Key Bills, Finding Your Elected Officials, and Signing Up For Alerts.

Thanks to all of you who have used our Action Center to reach out to your legislators on behalf of our community. Now, with significant changes being proposed in federal disability policy and funding, please take action now to support our local and national advocacy efforts to keep making a difference!