Down syndrome families want accountability from NDSS

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NDSS has been notably silent on the American Health Care Act (AHCA) a bill that will cut Medicaid by $880B over ten years and gut the system of supports and services for Americans with disabilities. NDSS has isolated itself from the broader disability community (and the other Down syndrome groups) and become an outcast in the disability world. This isolation and lack of communication does not serve our families or individuals with disabilities that we support.

We have several questions that we would like the NDSS board and President  to answer publicly.  

  • Why has NDSS not taken a public position on the American Health Care Act (AHCA)?
  • ·Why has NDSS done NO education to families who will be impacted by the bill? Why have families not been told that this bill would cut eligibility and services as the states lose federal Medicaid funding—and that Home and Community-Based Services (HCBS) are “optional” services, which could be cut when mandatory services are starved?
  • Asking for Members of Congress to "ensure that Medicaid reimbursement rates to the states are sufficient to meet the health care, employment support and HCBS needs of people with Down syndrome and other " would not be in any way sufficient to offset the cuts in Medicaid. Also, there are several other provisions in the bill  that would hurt people with disabilities. This looks like a very partisan way of appeasing Republicans members by staying neutral on a bill that would be devastating for people with Down syndrome and their families. Why is NDSS willing to ignore what's the right thing for people with Down syndrome?
  • Why has NDSS not utilized its grassroots Ambassadors program to help educate Members of Congress about the fact that Medicaid is critical to living independently and working in their communities? That the other option would be institutions?
  • How has NDSS been utilizing its considerable political capital when meeting with members of Congress? What are the NDSS talking points on this bill?
  • How have NDSS staff navigated the extremely complex system of Medicaid when there is no in-house expertise?
  • Why are advocates for the NDSS Buddy Walk on Washington not being instructed to ask their Members of Congress to vote NO to a bill that would be detrimental to Medicaid—the only insurance vehicle for Americans with disabilities to deliver long-term services and supports? Any other vague "healthcare" ask is a waste of valuable grassroots capital.
  • Why has NDSS not allied with other disability groups besides Autism Speaks? How does the fact that NDSS has isolated itself from the rest of the disability community benefit the organization and by extension, the families that it is supposed to represent?
  • Why has NDSS chosen to honor Princess Rima bint Sultan from Saudi Arabia at the NDSS gala on March 30, 2017? —a country consistently ranking among the "worst of the worst" in Freedom House's annual survey of political and civil rights--when it bills itself as the “leading human rights organization for all individuals with Down syndrome”?
  • What financial commitment does NDSS have with their partnership with SAUT: The Voice of Down Syndrome Society: The mission of SAUT is to empower individuals with Down syndrome in Saudi Arabia through world class education, training, research and awareness?