In May, members of the Massachusetts Down Syndrome Congress (MDSC) community traveled to Capitol Hill to advocate for policies that will improve the lives of individuals with Down syndrome and other disabilities across the country. Together, we met with members of Congress to share our stories and urge action on several critical federal priorities.

Now, we need your voice.

Please send a message to your legislators today and ask them to support legislation and funding that protects the rights, health, education, and future of people with Down syndrome and other disabilities.

We are urging Congress to support the following priorities:

Eliminate Outdated SSI Asset Limits

Support the SSI Savings Penalty Elimination Act (S. 1234 / H.R. 2540) to modernize Supplemental Security Income (SSI) rules that have not been updated in decades. This bill raises asset limits to allow individuals with disabilities to save more than the extremely low current caps, helping them build financial stability without risking essential benefits. It also addresses the “marriage penalty,” which unfairly reduces eligibility for married couples, and adjusts limits to inflation so they remain relevant over time.

Strengthen and Fully Fund Special Education

Support the IDEA Full Funding Act (S. 1277 / H.R. 2598) and protect strong federal oversight of special education programs within the U.S. Department of Education. The Individuals with Disabilities Education Act (IDEA) guarantees students with disabilities the right to a free and appropriate public education, but federal funding has never met the original 40% commitment and currently covers only a fraction of the cost. This bill works to close that gap, ensuring schools have the resources to provide services like speech therapy, behavioral supports, and individualized instruction that students with Down syndrome and other disabilities rely on to learn and thrive.

Support Critical Research and Public Health Programs

Protect solid and sustained federal funding for the NIH and CDC, including Down syndrome–specific and co-occurring condition research. This includes support for the NIH INCLUDE Project, which studies conditions such as Alzheimer’s disease, congenital heart defects, and diabetes that disproportionately impact people with Down syndrome. CDC programs also provide essential public health data and guidance, including work on Alzheimer’s disease and dementia. Continued investment drives advances in treatment, improves quality of life, and supports longer, healthier lifespans.

Every message makes a difference. Congress needs to hear directly from constituents about why these priorities matter. Please take a moment to contact your legislators today, tell your story, and urge them to stand with the Down syndrome community.