To support our work in education and cognitive research, we have taken positions on certain issues with an emphasis on protecting and promoting the rights of individuals with Down syndrome. Given that “all politics is local”, our advocacy work has focused on disability-related bills proposed by our friends in the Massachusetts legislature. Each may be filed in the House, the Senate or both. Given limited resources we work closely with the Massachusetts Down Syndrome Congress (MDSC) to select those that are most consistent with our mission.
In 2022, Massachusetts students with intellectual and developmental disabilities gained unprecedented access to postsecondary education at Massachusetts state colleges and universities under a law signed by Governor Charlie Baker. More than a decade in the making, this breakthrough legislation will require all of the state’s public college campuses to offer accommodations to young people whose severe disabilities prevent them from earning a standard high school diploma, allowing them to take classes as non-degree seeking students and join extracurricular activities alongside their peers — experiences that can transform lives for the better.
We have testified at the Massachusetts State House several times (read our President’s testimony here) because it’s not necessarily about obtaining a college degree but rather transitioning to independent living and competitively-paid employment in an integrated setting! National research data indicates that forty percent of adults with IDD who attended college were able to find paid employment, compared to an employment rate of sixteen percent for those who did not. This law is the first of its kind in the nation and we could not be more proud to have been part of its passage!
The most effective way to get our bills made into law is for you to reach out to your local state representatives and senators. Find your legislator here.
Our work has also included:
- Advocating for individuals with Down syndrome against discrimination in access to organ transplantation. The Act Providing for Non-Discrimination In Access to Organ Transplantation was successfully passed in December 2016;
- Advocating for the rights of students with cognitive disabilities during funding reauthorization of the federal Elementary and Secondary Education Act (ESEA) via passage of the U.S. Every Student Succeeds Act (ESSA) in 2015 to insure equal access to a high quality education for all students, especially those that have been historically underserved;
- Advocating for the passage of the federal law, U.S. Achieving a Better Life Experience (ABLE) Act, which was passed in 2014 to allow families and individuals with disabilities to save for disability expenses in a tax-deferred account without impacting their government benefits;
- Advocating for expectant and new parents of children with Down syndrome be provided accurate, up-to-date information about Down syndrome with the Act Relative to Down Syndrome Genetic Test Results. This bill passed in 2012 but we’ve gone further still, making public statements against the use of pre-natal testing for the purpose of terminating pregnancies diagnosed with Down syndrome.
Please contact us for more information if you’d like to get involved.