I have zero tolerance for bullshit from leaders right now.
In response to my post asking Sara Weir, President of the NDSS to walk her talk, she sent a form letter to blog readers who wrote in to her (the form letter is at the bottom of this post).
She’s saying that I am attacking the NDSS and her because I’m asking questions.
In an effort to be completely transparent about all of this, here is all of the correspondence between her and myself – which as you will read, I told Sara that I would be posting.
All of my correspondence with Sara is as follows:
I hope you’re having a great Memorial Day!
I want to personally follow up to your blog post from Saturday. Our NDSS team is working extremely hard to advocate for the Down syndrome community as we oppose those provisions of the ACA that would be detrimental to our constituents. Contrary to your blog post, I want to be sure you saw our Senate action alert that we issued on May 10th urging our advocates to contact their US Senators and more specifically asking folks to contact their Senators who are also members of the Republican Healthcare Task Force appointed by Majority Leader McConnell. See link: http://www.ndss.org/Global/Policy/ACA/AdvocacyAlert-
Last month, we had 350+ advocates (100 individuals with Down syndrome) from 38 states on Capitol Hill for our annual NDSS Buddy Walk on Washington, our annual advocacy conference. Collectively, NDSS and our advocates had over 250 visits with Members of Congress and Congressional staff. One of our key legislative priorities is (and continues to be) ACA and Medicaid. See additional info: http://www.ndss.org/Advocacy/Buddy-Walk-on-Washington/Buddy-Walk-on-Washington-Overview/Materials-2017-Buddy-Walk-on-Washington/
Our team had been actively meeting with Senators and staff on Capitol Hill since the House marginally passed their version of ACA. NDSS believes in direct advocacy and engagement with key decision makers as well as having individuals with Down syndrome and their families as part of our important discussions. I’d like to invite you and your family to come join us for our next round of Senate meetings, following this Memorial Day recess, on the Hill with Senate leadership and Congressional staff to help us advocate and educate them on our serious concerns in the current ACA House bill and cuts to Medicaid – having your personal story shared and told is key to helping us fight for people with Down syndrome. We will make all your travel accommodations and other necessary arrangements.
For your reference, you can find all of our NDSS action alerts listed here: http://www.ndss.org/Advocacy/Advocacy-101/Advocacy-Alerts/
Also, here’s a link to our ACA letters/briefing documents: http://www.ndss.org/Advocacy/Legislative-Agenda/Health-Care-Research/Affordable-Care-Act/
Thank you for your tireless advocacy! I hope you can join us to continue to advocate and educate on the importance of Medicaid and healthcare for people with Down syndrome and our families.
All my best,
Sara Hart Weir, MS
National Down Syndrome Society
Thank you for your response to my blog post. Your response, however,
did not actually directly address the questions that I posed.
Those questions are, namely:
“Does the NDSS, our ‘leading human rights organization’ believe that
affordable health care and self-determination are, in fact, human
“When will the NDSS release a statement strongly condemning any bill
that weakens and defunds Medicaid?”
I also wonder why the NDSS has not set up action alerts (in language
that self-advocates can understand), webinars in accessible language
to explain Medicaid (such as those that ASAN has done)?
I am alarmed that the organization that exists to serve my daughter
and others with Down syndrome is not rising up as are all other
disability advocacy organizations. Why has the NDSS not joined forces
with all of the other disability advocacy organization to create a
united front in opposing these cuts? When can we in the disabled
community and parent community expect this to happen?
I appreciate your offer to bring my family and I to Washington DC to
share our story. I am wondering if this sharing is a specific effort
to unequivocally oppose the AHCA? If not, then can you please explain
why the NDSS is not outright opposing per capita caps and block grants
like all of the other disability organizations are doing? I think that
advocates deserve to know if the NDSS is pursuing a different strategy
and, if so, what that strategy entails.
I appreciate and look forward to your direct responses to these
questions. As you may know, I have over 8,000 people subscribed to my
blog and over 70,000 regular monthly readers. I will be pulling
together your answers to my questions in a post, as many of my readers
are asking the same questions and waiting for answers from the NDSS. I
hope that in addition to my forthcoming post, you will consider a
public response or statement to address my concerns before June 9th,
Hi Meriah: Thank you for your response from our outreach on Memorial Day. I appreciate your questions below.
All of the materials that are posted on ndss.org, which I shared on Monday with you, along with the letters NDSS has issued to the Hill and our action alerts are what guides and frames our ongoing discussions and meetings with key Members of Congress – especially now that the debate has shifted to those key Senators leading the Healthcare Task Force. I would love if you’d be willing to come to DC and join my dedicated team on Capitol Hill to help share your family’s story.
I’ll also be in California and in your area in a few weeks and would welcome the chance to meet you in person to discuss our efforts on ACA, Medicaid as well as the many other issues and initiatives that NDSS is involved in.
Again, thank you for your tireless advocacy.
I kind of sat on that for a while, searching through each link that
you had placed in the original post. I also followed through with each
link on the NDSS site, which ultimately led to nothing. Or more
specifically, they led me around in a loop to no concrete, up-to-date
information about anything related to the terrifying threat against
Medicaid and the current pieces that all disability-rights
organizations are currently in hard battle against.
As you said that you will be in California soon and would welcome the
chance to meet with me in person, I invite you to my yurt. I live on
the Lost Coast, which is located nearly perfectly between Portland and
San Francisco. Since I live off the grid with no phone service (which
I wouldn’t use anyway as I am deaf!), I would be happy to arrange a
time to meet you as I do all of my visitors, at our general store,
then I can escort you in to our farm.
Please let me know what dates work for you.
It will be wonderful to have you, and to talk in person about all of this.
As the president of the National Down Syndrome Society (NDSS), I want to personally thank you for expressing your concerns and follow up. First and foremost, I have no political affiliation. Very simply, my political party is NDSS – let me say again, my political party is NDSS and everything we do from an advocacy perspective is to fight for those in our community.
Our NDSS team is working extremely hard to advocate for the Down syndrome community as we oppose those provisions of the ACA that would be detrimental to our constituents.
Unfortunately, we are in a very tense political environment and I understand the passion you possess on a number of issues. However, I want to make sure that I respond to you directly regarding your email and the blog post by Ms. Meriah Nichols. Ms. Nichols can question my leadership and the direction of our organization, but I am disappointed she decided to attack our advocacy staff concerning our work. I have personally reached out to Ms. Nichols a number of times and invited her to come to DC, which she did not respond to those efforts. However, we did make contact about meeting in California, and I am hoping we can meet at a convenient place for both of us to discuss in her home state, or at the very least talk so we can all work together for the betterment of our community.
We have been working hard on Capitol Hill meeting with key offices to express our concerns. In fact, within two hours of the Senate draft being released, I personally attended a meeting with Senator McConnell’s staff and our Kentucky advocates pushing for a healthcare bill that keeps Medicaid totally harmless. Let me be clear, any changes to Medicaid negatively are fiercely advocated against.
We have also mobilized our Down syndrome community on several occasions by issuing “Advocacy Action Alerts” on April 14, May 4, May 10, May 30, June 15 and most recently this Sunday, June 26. Each of these action alerts details the harm that proposed changes to ACA and Medicaid would have on people in the Down syndrome community and encourages advocates to tell their story to their elected Members of Congress. I’m including these links below:
April 14, 2017 Advocacy Alert: http://www.ndss.org/Global/
Policy/ACA/AdvocacyUpdate- LegislativeEffortstoRepealandR eplaceACA-4.14.17.pdf
May 4, 2017 Advocacy Alert:http://www.ndss.org/
Global/Policy/ACA/ AdvocacyUpdate- LegislativeEffortstoRepealandR eplaceACA-5.4.17.pdf
May 5, 2017 Advocacy Alert:http://www.ndss.org/
Global/Policy/ACA/ AdvocacyUpdate- HousePassageofAHCA-5.5.17.pdf
May 10, 2017 Advocacy Alert: http://www.ndss.org/Global/
Policy/ACA/AdvocacyAlert- SenateAdvocacyAHCAandACATaskFo rce-5.10.17.pdf
May 30, 2017 Advocacy Alert (Reposted from May 10, 2017): http://www.ndss.org/Global/
Policy/ACA/AdvocacyAlert- SenateAdvocacyAHCAandACATaskFo rce-5.10.17.pdf
June 15, 2017 Advocacy Alert:
Policy/BWW/NDSS%20Action% 20Alert%20Reissued%20from% 20May%2010.pdf
June 26, 2017 Advocacy Alert:
document/d/ 1zCke6dYeSs2W2hWMJUFIKOq9UgcoL N5bXA-6DnuS92U/pub
One of our key legislative priorities is (and continues to be) ACA and Medicaid. Our team had been actively meeting with Senators and staff on Capitol Hill since the House marginally passed their version of ACA. NDSS believes in direct advocacy and engagement with key decision makers as well as having individuals with Down syndrome and their families as part of our important discussions.
The most impactful advocacy strategy is to tell your personal story as our KY advocates did last week to Senator McConnell’s staff. NDSS wants to work with our community to help tell stories and advocate. If we work together, we can affect policy positively and much more powerfully. I want to personally invite you and your family to join me in Washington, DC for our next round of Senate meetings, following the Fourth of July recess, since the vote has been postponed. If you cannot come to Washington, we are happy to help arrange in-district meetings where myself of one of our fantastic NDSS staff members can help arrange. Even more, even if it is a phone call to a Member of Congress and/or a letter, please respond back to me and let me know how NDSS can help. At this crucial time, I want all of us to be working together.
NDSS will continue to meet with Senate Leadership and Congressional staff to advocate and educate them on our serious threats to individuals with Down syndrome in the current Senate ACA framework. NDSS will make all your travel accommodations and other necessary arrangements.
Again, thank you for your tireless advocacy. I look forward to hearing from and working with you in the future!
All my best,
For your reference, you can find all of our NDSS action alerts listed here: http://www.ndss.org/Advocacy/
Also, here’s a link to our ACA letters/briefing documents: http://www.ndss.org/Advocacy/
Legislative-Agenda/Health- Care-Research/Affordable-Care- Act/