Activism – Advocacy – Action

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Our National Down Syndrome Society (NDSS) Philosophy on Advocacy & Advocate Empowerment

The mission of the National Down Syndrome Society is to be the leading human rights organization for all individuals with Down syndrome. To that end, as an organization, we are immensely proud of the fact our policy of aggressive, nonpartisan engagement has helped our organization become a highly effective voice for promoting economic empowerment and social change for all people with Down syndrome across all levels of government.

For nearly 40 years, NDSS has worked to educate policymakers — of all political stripes — to advocate and advance an agenda that spans the entire life experience of individuals with Down syndrome; these priorities cut across inclusive education, economic self-sufficiency, community integration, employment, healthcare and research.

Our NDSS National Advocacy & Policy Center supports our non-partisan mission in a number of important ways, including:

  • Working with the U.S. Congress, the Administration, state governors and legislatures — regardless of political party affiliation — to develop legislative and regulatory initiatives that improve outcomes
  • Training and educating parents, self-advocates and others to advocate on the local, state and national levels through our cutting-edge grassroots NDSS DS-AMBASSDOR® Program
  • Organizing and participating in national stakeholder coalitions
  • Developing public- and private-sector partnerships to advance common objectives

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As part of our 2017 efforts, the NDSS Board of Directors — working with our network of over 380 Down syndrome affiliate organizations, self-advocates, families and other members of the Down syndrome community — has established several key legislative priorities, including:

  • Opposing health care reform legislation that makes draconian cuts to Medicaid and other changes that undermine the health care and supportive services that individuals with Down syndrome need
  • Expanding the Stephen Beck Jr., Achieving a Better Life Experience (ABLE) Act, an effort originally spearheaded by NDSS where 49 states enacted state ABLE laws, and 23 state ABLE programs are now available to our families
  • Increasing inclusive education across all educational environments, advocating for full funding of the Individuals with Disabilities Education Act (IDEA) so that all students with Down syndrome are able to receive a free appropriate public education in the least restrictive environment (last month, we launched our new NDSS National Inclusive Education Task Force to create more inclusive educational environments for all students with Down syndrome all while ensuring our students are graduating with employment opportunities in a more inclusive workforce and world)
  • Supporting legislation to increase research on congenital heart disease, which affects approximately half of all people with Down syndrome, in an effort to improve long-term health outcomes and allow individuals with Down syndrome to live long, healthy lives
  • Promoting nondiscrimination in organ transplantation by increasing enforcement of federal nondiscrimination laws and enacting state laws to address continued barriers to receiving this lifesaving care
  • Increasing National Institutes for Health (NIH) biomedical research funding for Down syndrome research across all Institutes and Centers

The work of NDSS is designed to help meet our societal obligation to protect the vulnerable. As we continue to move forward, we are confident that through engaging with policymakers from all political parties equally and respectfully — and more importantly, telling our stories — we will continue to advance our values and the priorities of our community.

Join Our NDSS Army!

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Subscribe to our NDSS Action Alerts: Whether you are not sure who your local elected representatives are or you are a seasoned advocate, everyone can get involved by signing up for NDSS Advocacy Alerts. Our NDSS team wants to keep you in the know on what you can do to help support and advance our Down syndrome legislative priorities. A quick phone call or submitting a letter by email both help affect positive changes for people with Down syndrome!

 Join Our NDSS DS-AMBASSADOR® Program: Participants are volunteer advocates committed to serving as liaisons between NDSS and their Congressional delegations. The backbone of NDSS Advocacy programs, our ambassadors are volunteers who build long-lasting relationships with their U.S. Senators and U.S. Representatives.

Join Us in Washington, D.C.: We host our annual NDSS Buddy Walk® on Washington Advocacy Conference each year, and it is the perfect opportunity to join hundreds of Down syndrome advocates from across the U.S. to make a difference for people with Down syndrome. This annual two-day advocacy conference includes a day of training and our NDSS “Capitol Hill Day.” Our 2017 dates are April 10-11, 2018. Stay tuned – our 2018 registration will open in September!

For more information, please visit www.ndss.org.

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