Sara Weir is the President of the National Down Syndrome Society (NDSS), which is the organization that spearheads and financially benefits from the Buddy Walks ®™ . NDSS claims to be the “leading human rights organization for all individuals with Down syndrome,” and yet in the face of the loss of Medicaid, they have been, for all intents and purposes, silent.

Silent, when the NDSS has promised to be at every table and stand up and fiercely advocate for people with Down syndrome and disabilities.

Sara Weir President of the NDSS


Silent, when The NDSS actually have the connections to affect powerful change right here, right now.

A Little Background on Medicaid:

  1. Medicaid is the federal partnership that provides states with money to help pay for healthcare AND programs that help people across the disability spectrum.
  2. A lot of the program funding has something to do with things the Down syndrome community deeply cares about: keeping our kids and their tribe out of institutions. Helping them work. Helping them be productive and integral members of our communities.
  3. If these cuts happen, our kids are likely to be stuck at home, without work supports. Without health care. Without help to reach their goals and dreams.

A Little Background on Sara Weir & NDSS

  1. The NDSS is The National Down Syndrome Society – they raise large amounts of money through their very popular Buddy Walks ®™ across the United States.
  2. That money is supposed to be used to fund the NDSS to help us when we need it.
  3. The NDSS has LOTS of Republican connections – in fact, Sara Weir, the President of NDSS, has a personal membership to the Capitol Hill Club, the exclusive Republican social club, in which she has frequent meetings on behalf of the NDSS.
  4. A strong stance against Medicaid cuts and caps, a strong stance against the new healthcare bill, signed by both Sara Weir and Robert Taishoff (the Chairman of NDSS), leading the public call against these cuts will be powerful.

So far, Sara Weir has not added her own name to any public statement on Medicaid made by the NDSS, nor has Robert Taishoff.

My fellow people with disabilities are placing their bodies literally on the line  against these cuts; parents of people with Down syndrome making videos that are going viral about what these Medicaid cuts are going to do to their families. We have columns and articles being written, we have parents, allies, advocates fighting tooth and nail against these proposed cuts that will be so devastating for people with disabilities in the United States of America.

But we are without direct connections to Mitch McConnell’s office or other power-players that Sara Weir, Rob Taishoff and the NDSS have. And the NDSS are not utilizing those connections or speaking up about it now.

In times of crisis, we look for who is MOST able to help in the fight.

Please. Join me in asking – no, demanding – that Sara Weir and the NDSS step up to take a strong stance against this devastating proposed piece of “healthcare” that will affect us all so drastically.

Join me in demanding that Sara Weir walk her talk about being at the table and “storming” the hill in defense of people with disabilities.

Join me in holding her accountable to do what we are paying her to do: we are paying her to help our kids and community stay safe, healthy and able to participate, through Medicaid and the continued Medicaid funding.

Join me in urging Sara Weir to use her intimate connections with Republicans  to halt this devastating proposed bill.

Her email address is: sweir@ndss.org


I have posted all correspondence between Sara and myself HERE, along with form letter that she has sent to many blog readers when they write to her about these issues.

NDSS Board Members and emails that I have:

For More:

TrumpCare ToolKit

Information on WHAT TO DO NOW: Medicaid Will Be Gone Forever

On January 19, 2017 the National Down Syndrome Society (NDSS) made a statement on their public Facebook page reporting they had met with Betsy DeVos, the nominee for Secretary of Education. This meeting and this post happened in the absence of any prior statements decrying her nomination.


It perhaps goes without saying that DeVos’ nomination hearing was an abject disaster, making plain not only her absolute lack of qualifications to hold such a position but also her complete lack of preparation for the hearing itself. Her lack of qualifications alone should be cause for concern, but her comments on special education and the laws that govern it were particularly alarming.


So alarming that there has been enormous backlash from the disability community and parents alike, a situation creating unlikely allies even among staunchly politically divided individuals. So alarming that one would expect every organization that claims to represent the disability community to stand in firm opposition to her nomination.


Enter NDSS, the self-proclaimed “leading human rights organization” for individuals with Down syndrome. Instead of rallying its community of individuals with Down syndrome and their families, instead of giving us action steps to protest this nomination, instead of releasing a public statement condemning DeVos’ proposed trampling of civil rights, they met with Ms. DeVos and released a cheerful statement.


NDSS claims to be an organization that does not endorse candidates or nominees and inferred that to pass on the opportunity to meet with Ms. DeVos at this time would have been politically detrimental.


No other disability-related organization has met with Ms. DeVos as of yet, but it is reasonable to assume most will eventually work with her if she is, in fact, confirmed. This meeting was in no way politically necessary to ensure a working relationship with Ms. DeVos during her presumed tenure as Secretary of Education. Rather, this meeting and their praise of Ms. DeVos read merely as an endorsement of not only Ms. DeVos but also of her dangerous policies.


Timing is everything, and on this, NDSS got the timing horribly, embarrassingly wrong. NDSS made a political maneuver to place itself in a position of favor, but in doing so gave DeVos’ supporters an endorsement and a cheerful photo opportunity to use as an example of how the disability community supports her nomination.


NDSS went on to “applaud her commitment to special need families,” and stated that DeVos spoke of her “strong support and record fighting for special needs families.” This from a woman who days earlier, under oath, stated she planned to leave IDEA to the states and seemed confused as to what IDEA stands for or does for the disability community.


As the “leading human rights organization” for Down syndrome, we must hold NDSS to a much higher standard than a politically advantageous photo opportunity. That place of honor in this community comes with it a great deal of responsibility and, by necessity, the need for making moves that may not “feel good” but are ultimately right. It means skipping photo ops for hard hitting questions, it means rallying a community to action, and it means speaking truth to power: DeVos has no place anywhere near the Department of Education and this community will not stand for it.


Holding our advocacy organizations accountable for their actions can be daunting, and I feel it challenges our deeply held belief that we must sometimes go along to get along. We do it all the time in classrooms, IEP meetings, community events. After a while, we understand we cannot go in to every situation with our armor on if we want a net positive outcome down the road.


I’m telling you now that this is one time we must have our armor on. We must push back. NDSS is one of our direct lines of communication with the complex governing system up there on that hill. We must hold them accountable and be assured that they will fight for people with Down syndrome, even if that conversation is uncomfortable and doesn’t leave everyone smiling at the end.


Ms. DeVos is without doubt a danger to the civil rights of the community NDSS claims to represent. This goes beyond a mere difference in political opinion or varying ideas of how best to educate our children. There are ways to disagree with her nomination and ways to advocate that do not involve losing all political capital. It involves chipping away at that glossy exterior, though, that seems to accompany most things regarding Down syndrome “awareness.” It involves holding those that govern us accountable for their actions and letting them know that our community’s rights are not for sale.


I implore NDSS to step up and lead as we enter uncertain political times, to model for us effective political resistance when our community’s civil rights are at stake. As our human rights organization, it’s time to move past the photo opportunity.

About the Author of This Post

Melissa Stoltz is a writer, reader, policy wonk and mother of two. When she isn’t writing, you can find her watching episodes of Star Trek: TNG and knitting.

You can find her at her blog, Garden of My Heart

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