Five Questions for NDSS

  1. What is the NDSS position on using vouchers to privatize special education.
  2. Has NDSS taken money from Devos or anyone connected to DeVos? 
  3. NDSS has a new emphasis on human rights, but every employee on your website presents as white. What is your diversity plan?
  4. What is the NDSS position on the Affordable Care Act and block grants for Medicaid?
  5. Did NDSS sign off on Avonte’s Law even though funding for RFID chips in disabled kids was being taken from community-police relations programs in minority communities? (I’ll catch readers up on this law when it gets re-introduced in Congress)

Yesterday at Pacific Standard I have a piece on the dilemma presented to advocacy orgs (I focus on disability, but I think it’s a general problem) by the Trump administration. From a PR perspective, they are completely toxic to any organization that is at all concerned about justice, social or otherwise. But from an influence perspective, you need access to do your job.

In the disability world, DeVos’ position that enforcement of the Individuals with Disabilities Education Act (IDEA) should be left up to the states emerged as particularly dangerous — and would also violate federal law.

Shortly after the hearings, the National Down Syndrome Society (NDSS), one of the more visible Washington-based Down syndrome advocacy groups, published a post on Facebook showing DeVos meeting with them and posing for pictures. The headline: “National Down Syndrome Society Meets with DeVos. Applauds her commitment to special need families.” The world of disability rights activists, including many parents of kids with disabilities, reacted in fury; this was, after all, a cabinet nominee who seems to find disability rights expendable. There ensued hundreds of negative comments, widespread denunciations on social media, accusations leveled at the pro-Trump chairman of NDSS’ board, quick clarifications from NDSS, secret phone conferences with their backers, and so on. The National Down Syndrome Congress (NDSC), a rival organization, released a statement requesting that the Senate delay voting on DeVos’ nomination. The consequences of that poorly worded photo op are going to linger, possibly for years, in this particular community.

I have a history – —all positive – —with NDSS. I signed on as an ambassador during the run up to the ABLE act, a bill designed to make it possible for some people with disabilities to save money for education and housing without losing their government benefits. There were rumors that the NDSS was telling the GOP they were willing to exclude adults diagnosed with disabilities in exchange for kids – —i.e., protect people with Down syndrome and ignore the needs of others, —but I thought the law overall was worth fighting for. Last March, NDSS included a Trump “MAGA” hat in a charity auction. I was sitting in a pub in D.C. late that night, as it happened, with a gathering of other disability -rights activist (and a stray medievalist or two), when my phone blew up with the controversy. I stepped outside, and personally called Sara Weir on her cellphone to make sure she knew what was going on. She emailed me a statement, and removed the hat from the auction, and I distributed her words across advocacy networks to calm the controversy.

But right now, NDSS isn’t talking. I’ve repeatedly emailed them, called all the numbers I know, and asked these four questions. They are not responding, hence I’ve had to go more public. I say this not just as a journalist, but as a father of a boy with Down syndrome.


To my mind, NDSS is just doing what it’s always done, seeking access and supporting laws help kids and adults with Down syndrome, even if the law ignores or actively hurts other marginalized communities. It seems to be increasingly a Down Syndrome First, organization, not a Human Rights organization.

The DeVos debacle is a case in point. NDSS thought it was business as usual. They have a rich right-winger running their board, the head of the DS Guild of Michigan works/worked for the running mate of Betsy DeVos’ husband when he ran for governor. They used those contacts to get access, to get a photo op, to demonstrate that they are in the room where it happens. Then the community blew up, and liberal backers of NDSS quickly rallied to argue that the access was worth the bad optics, that it was just poor messaging rather than a sign of ill intent.

I’ve never taken part in the non-profit wars within the Down syndrome community. There are a lot of hurt feelings and divisions, competition for donations and publicity, and some personality clashes (I’m told).

But someday Trump will be out of office, and if NDSS wants to maintain credibility as a “Human rights org,” rather than a right-wing Down syndrome organization that doesn’t care about disability rights more generally, they are going to have to change course, and do so quickly.

It might already be too late for this current crop of leadership, but I hope not.

And you can start by answering questions.

Leave a Reply