There are two events coming up, at the end of March/beginning of April, that are aimed at advocacy in the disability and Ds community and meeting with Congressional leaders on The Hill.  The first is the 2017 DISABILITY POLICY SEMINAR (DPS), a 4-day event (March19-22) hosted by: American Association on Intellectual and Developmental Disabilities (aaidd), The Arc, Association of University Centers on Disabilities  (AUCD), National Association of Councils on Developmental Disabilities (NACDD), Self Advocates Becoming Empowered, and United Cerebral Palsy.  The second, is the annual Buddy Walk on Washington (BWW) (April 4-5) hosted by the National Down Syndrome Society (NDSS).

The DPS website introduces their day on the hill event:

“The challenges and realities facing the disability community demand our continued focus and diligent advocacy.

Lifelines like Medicaid, the Affordable Care Act, Supplemental Security Income, and Social Security are threatened. These federal programs provide the key to community living and inclusion for people with I/DD across the nation.  Any cuts to these lifelines would be devastating.

These factors lead to one inescapable conclusion—we must mobilize like never before. To make a difference, we must join together as a collective movement to ensure that our lifeline programs and civil rights are protected.”

and includes tips for talking to your representatives:

“Talk about what’s most important to you! Whether that’s Medicaid, Social Security, or Education—talk about how your life, the life of your family, or the people you serve are affected.”

The BWW website offers:

“During the NDSS Buddy Walk® on Washington, participants receive advocacy training and meet with Members of Congress and their staff on Capitol Hill to advance education, research and healthcare for people with Down syndrome.”

Each year the NDSS National Advocacy & Public Policy Center staff design three “asks” or specific calls to action that attendees are trained on before they attend the meetings on The Hill.  The specific details regarding these “asks” are not made available ahead of time. They are designed to coincide with the current political climate so they have the best chance of being successful.

Heather Sachs, JD – Vice President, Advocacy & Public Policy – was able to provide a general outline for this year:

Heather Berner Sachs We have not set them yet because they depend on timing of legislation (we need specific asks not just policy statements). I can tell you that there will be an education-related ask, as well as support for all of the ABLE improvement bills (all 3 will be reintroduced soon). Depending on where Congress is with ACA and Medicaid at that point, that will likely be high on the agenda too. Hope this helps!!


What would you say?

Given that both events require advocates to pay their own way and travel to Washington D.C, we recognize that it may be impossible for many families to attend. Also, considering that families with adult and aging members with Downs syndrome have very different needs than those with young children,  I’m wondering what our community would like to see discussed at these meetings.

  • If you have ideas that you’d like to share, please let us know. Try to make them as specific as possible.
  • If you are attending either of these events and have an idea of what you plan to say, please share if you feel comfortable doing so.
  • If you’ve attended one of these events in the past and would like to share your experiences, please do!

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