Who Does the National Down Syndrome Society Serve Exactly?

The NDSS is conspicuously absent from the Consortium of People with Disabilities
The National Down Syndrome Society is noticeably absent from the Consortium of People with Disabilities that is striving to preserve healthcare and income

A Consortium for People with Disabilities has been formed. This is an alliance of cross-disability advocacy groups, groups that support people with disabilities and their families. They are not political groups.

Now, all of you have heard of the new “healthcare” legislation that seeks to slice up Medicaid – I wrote about what Medicaid means to me in this post, linked here. For all of us with disabilities, it is huge, “huge” as in “life-threatening”. These cuts are also aimed straight at Social Security Income. So, anyone who is unable to work because of disability, or who benefits from a program that is funded by Medicaid or SSI, as many people with intellectual disabilities like Down syndrome do, will suffer.

This letter, crafted by the Consortium, does not include the National Down Syndrome Society (NDSS).

This is more than disappointing.

NDSS, remember, gave DeVos a gorgeous photo-op before she was confirmed, one in which we will never know the affects of. That is, did a politician who was on the fence about voting for DeVos move in favor of her after seeing the photo, thinking that if the NDSS was in support of her – and a person with Down syndrome standing there to boot! – then it must really be okay with us all in the Down syndrome/disability community.

The NDSS supported DeVos before she was confirmed; they supported a woman who will not support, defend or protect students with disabilities, of which all of our kids with Down syndrome are.

And now, with these massive cuts in the very framework of our health and security system looking, the NDSS is not using their voice, position or power to join in with the rest of the disability community in protest.

The National Down Syndrome Congress (NDSC) is there. Why on earth is the NDSS missing?!

According to the NDSS Mission & Vision Statement on their website:

MISSION

The National Down Syndrome Society is the leading human rights organization for all individuals with Down syndrome.

VISION

The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations and become valued members of welcoming communities.

Can someone please explain to me how NOT adding their support and signature to the Consortium of People with Disabilities’ letter that is striving to preserve healthcare and income for people with disabilities is being a “leading human rights organization for all individuals with Down syndrome”?

I’m wondering right now who exactly this organization is supposed to serve?

If they are flunking so hard on their mission, if they are standing up for the rights, health, education and income of individuals with Down syndrome, how on earth are they serving any of us with kids with Down syndrome?

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(I apologize in advance for the screenshots/upload because I couldn’t figure out how to show a pdf! The pdf in it’s full form is accessed through a link in the orange box at the bottom of this post)

The pdf for the Letter to the Senate by the Consortium:

Letter-to-the-Senate_FINAL_5-19-17

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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5 Comments

  • Ummm just because they didn’t sign this letter doesn’t mean anything. They have advocacy alerts on their page clearly stating their concerns and telling you who to contact. Go check it’s on their page.

    • As I said to you on Facebook:

      Adina Lund, interesting you say that – if you have to dig around on their site to find anything at all, and if they did not sign an alliance statement that EVERY OTHER DISABILITY ADVOCACY group signed, then it’s obvious that this is not an important element to them, and that they are emphatically NOT fulfilling their mission. Below, please find a screenshot of their main page – the proposed medicaid cuts and slashes to social security are NOWHERE. Looks like photos for Times Square are more important to them than that.

      screenshot of NDSS site

  • I agree, seems like a missed opportunity. Glad to see the NDSC there, but Global was not there either. I do think the NDSS Governmental Affairs does a lot, but it needs easier access.

    • Global is not a US-based organization is it? I also know that they donate a consider amount to NDSS.
      I think it’s reprehensible that the NDSS is not explaining to families with a connection with Down syndrome what this stuff actually MEANS. If this bill goes through, most families are going to be so screwed, and most don’t even realize that their child benefits from Medicaid/SSI funding. Sigh.

  • I typed and typed and typed – and just deleted. Why do I feel like this is a political conversation and I have to “hold my tongue” – Oh, right. Because it is. About Global Down Syndrome Foundation, they are a US org. They are based out of Denver. I am a supporter of Global because of the way they work and spend their money to help people right now and in the future primarily in the areas of medical care and research (into ways to extend long healthy lives.) Global does advocacy work and, you’re right, they grant to other Ds groups of all sizes to do local and national education and employment of people with Ds. I’ve always felt that “The Nationals” should carve and claim their “specialty” and run with it. In previous years the NDSS, being in DC and NYC and spending on lobbyists and hobnobbing gov’t, has made policy their niche. SO, yes, this silence on the line for the majority of our population is disturbing.

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