Advocacy Overview

Advocacy in Action

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.

For this MA legislative season, our priority bill is S.2844 An Act Creating Higher Education Opportunities for Students with Intellectual Disabilities, Autism & Other Developmental Disabilities.  This bill removes the barriers that preclude many people with intellectual & developmental disabilities (IDD) from participating in higher education.  If this bill passes, people with IDD who are unable to pass the MCAS and consequently unable to obtain a regular high school diploma, would be able to enroll in courses with non-disabled peers.  They would be able to participate in extracurricular activities and other aspects of campus life with supports and services to facilitate inclusion.  It’s not necessarily about obtaining a college degree but rather transitioning to independent living and competitively-paid employment in an integrated setting.  15 state colleges and universities are currently partnering with 73 school districts and over 200 young adults with IDD in a pilot program.  Institutes of higher education include:  UMass Amherst, UMass Boston, Bridgewater State University, Framingham State University, Westfield State University, Salem State University and Bristol, Bunker Hill, Holyoke, Roxbury, MassBay, Middlesex, Mt. Wachusett, Northern Essex and Cape Cod community colleges. It is important to provide inclusion opportunities at more public institutions of higher education and we have testified at the Massachusetts State House on the importance of comprehensive legislation so ALL youth with IDD can have opportunities to access inclusive transition programs at institutes of higher education.  Read our President’s testimony here.

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:

  • Presenting on Massachusetts Inclusive Concurrent Enrollment (MAICE) initiative and the importance of increasing funding for inclusive higher education programs for students with IDD. This is important because 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;
  • 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.

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