NDSS is at the Table, But What Are They Saying?

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

UPDATE:

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

Sara Weir of the NDSS has the Republican connections to make a crucial difference in the fight against the proposed Medicaid cuts: is she doing anything?
Meriah

is a deaf blogger, global nomad, tech-junkie, cat-lover, Trekkie, Celto-Teutonic-peasant-handed mom of 3 (one with Down syndrome and one gifted 2E).

She likes her coffee black and hot.


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10 Comments

  • Meriah, I appreciate your passion for the disability community. I find it hard to believe that attacking an organization will do much good but divide us as a group. Perhaps you should talk with the NDSS policy team and work with them?

    • Hi Catie – I did reach out to Sara Weir directly and she did not answer any of my questions. As to contacting the policy team there, there currently IS NO policy team, as Sara has fired everyone.
      I’m not attacking the NDSS; I am holding them accountable and asking them to do the job that we have all paid for them to do.

      • Meriah – at any non-profit or corporate entity, positions come and go, why are you so focused on the personal? Whatever the situation, just gotta kinda move-on. Sara has been at the helm for a number of years I think, I am sure she would talk with you. Sorry, you are upset.

        • Catie, nothing in this is personal. I don’t know Sara. I am simply holding her accountable to her actual job. I would not be putting time into this if I didn’t think she could really make a difference. But with her Republican connections, and her club membership, etc, I think she can.
          And yes, I am upset. Over 23 million vulnerable Americans are on the brink of losing healthcare, and far more about to lose supports that help fund jobs and programs that are vital to their independence and inclusion, and a non-profit that I have contributed to and many parents scrimp to donate to, a non profit that can make some real change right now, is doing virtually nothing about it.
          I am surprised you are so casual about this – even if you have nothing to lose, from a humanitarian aspect, this is devastating.

        • Catie-are you serious? Do you have a child with DS? Having a child with special needs means that you advocate and sometimes that means the mama bear or tiger comes out. I and many of my fellow moms will NEVER move on and we do get angry. We do any and everything we can to get the services and supports that we and fellow families needs. I am saddened to think that if you do have a child with special needs that you would EVER think it appropriate to move on and not get angry and not try to do something about it when your child is not getting what they need.

  • Merieh, thank you for your passion and advocacy. If you disagree with my leadership style I understand and I am certainly happy to discuss with you. However, we are at a crucial time for our community and I want to work hard to make sure Medicaid stays fully established for our community. It is hurtful to my team that you have attacked our advocacy efforts and I wish we could have a one-on-one conversation and work to unite us instead of blog postings that are trying to divide us at this time.

    I want to work with you – As I have stated to you last month, we would welcome you and your family to join us in our ongoing meetings on Capitol Hill to educate and advocate on provisions in the ACA proposals that impact our community. I remain willing to meet and discuss with you so we can start to work together. Please contact me directly and let’s put our differences aside and work together for all people with Down syndrome.

  • Merieh, thank you for your passion and advocacy. If you disagree with my leadership style I understand and I am certainly happy to discuss with you. However, we are at a crucial time for our community and I want to work hard to make sure Medicaid stays fully established for our community. It is hurtful to my team that you have attacked our advocacy efforts and I wish we could have a one-on-one conversation and work to unite us instead of blog postings that are trying to divide us at this time.

    I want to work with you – As I have stated to you last month, we would welcome you and your family to join us in our ongoing meetings on Capitol Hill to educate and advocate on provisions in the ACA proposals that impact our community. I remain willing to meet and discuss with you so we can start to work together. Please contact me directly and let’s put our differences aside and work together for all people with Down syndrome.

    • Hi Sara,

      I am curious why you feel that asking questions is an attack. I think that my post is very clear in that I have serious questions, questions that I did ask directly of you, and which you pointedly evaded.

      I am glad you want to work with me! The way to do so is to take a firm, unapologetic, vocal and strong stance against any and all cuts, blocks or caps to Medicaid. The way to do so is to be working along the lines that NDSC is, with strong advocacy that is without doubt about preserving Medicaid, educating the parent community about what those blocks, caps and cuts will mean for our community.

      I don’t have anything personal against you. I simply expect you to be doing your job and helping to use your connections and leadership to, as you have said, “storm the hill” and affect change.

      As I said in my email, you are welcome to my yurt. I will also be at the NDSC Convention, if that is more convenient for you. And yes, let’s talk. But until then, I implore you to rise up and do everything in your power to STOP the BCRA.

  • Since first being introduced to my 15 year old daughter when Sara was just 19 years young (my daughter is now is 32 now… that’s over 15 years of helping me advocate through the maze of bureaucracy) her passion for the Ds community has grown. Sara is only one person & can’t fight the fight or storm the hill by herself. She needs passionate parents like yourself by her side. She advocates in all 50 States & beyond & can only do so much. She meets with legislators from every State & beyond & can only push State legislators so far. Each State runs their Medicaid program differently with little federal government assistance. I know the ACA is a federally run program & has many of us parents concerned, but with the NDSS & the voices of the parents stepping in there could be some changes. It takes a village to fight the fight, so don’t put this all on NDSS or Sara Weir. She is a godsend to many of us parents.

    • Kathy,
      Sara is not “one person” – she is the President of the NDSS and has a large budget. People can be – and ARE – hired to help with the crafting of messages and support. Sara did a great job leading the ABLE Act; let’s see that replicated in a fight against ANY and ALL Medicaid caps/cuts/carveouts and in saving Medicaid.

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