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