If Congress cuts Medicaid funding, health policy researcher Ari Ne'eman says people with disabilities face a "unique threat." zeljkosantrac/Getty Images/E+ hide caption
When Ari Ne'eman heard Robert F. Kennedy Jr. call autism an "epidemic" that "destroys families," Ne'eman felt like he had stepped into a time machine - heading in the wrong direction.
It was during an April 16 press conference where Kennedy, the nation's top health official, went on to claim that autistic children will "never pay taxes" or "hold a job" and that their condition is preventable.
"This is a throwback to how people talked about autism 25 years ago," Ne'eman said.
Ne'eman knows this history well, having studied it as a Harvard health policy researcher, lived it as an autistic person and shaped it as the co-founder of the Autistic Self Advocacy Network.
"This is a very dark time. Disabled people are under unique threat," Ne'eman told Tradeoffs when we sat down recently for an interview about the sharp policy shifts in Washington. "But I still have hope."
He said he derives much of that hope from the successful history of the disability rights movement, the subject of his upcoming book.
"The Americans with Disabilities Act and a whole host of other priorities only exist because people with developmental disabilities, people with physical disabilities, blind people, deaf people, people with mental illness and many other categories decided, we have to all hang together or we'll surely hang separately," Ne'eman said. "The word disability is as much a coalition as the term people of color or LGBTQ."
Below are highlights from our wide-ranging conversation, which has been edited for length and clarity.
DAN GORENSTEIN: In this moment of great uncertainty about how our health care system is changing, why are the stakes especially high for people with disabilities?
ARI NE'EMAN: So disabled Americans really have a uniquely challenging position, in that they are very frequently devalued and dehumanized by the health care system. But, at the same time, they have a tremendous need for health care. Some of it is the same kind of medical care that people are very familiar with - things like prescription drugs or doctors visits. But there are also, I would say, unique needs - the person who helps you use the bathroom, the person who helps you find and keep a job. These are often very intimate and very personal kinds of support without which people would not be able to live.
Ultimately, for many people with disabilities to survive and thrive on their own terms, there is a need for some very costly, ongoing assistance. For people with developmental disabilities - things like Down syndrome, autism, cerebral palsy - it's common for home- and community-based services to cost $40,000 or $50,000 a year.
So having a service system that is adequately financed and responsive to people's desires about how they want to live is absolutely crucial.
GORENSTEIN: That 'service system' as you call it, Ari, is taking some real hits in Washington right now.
The Trump administration has moved, for example, to dismantle a federal agency dedicated to helping older and disabled Americans live independently.
Congressional Republicans are also contemplating deep cuts to Medicaid, the public health insurance program that covers some 15 million Americans with disabilities.
Has the disability community faced potential cuts this sweeping before?
NE'EMAN: The most notable comparison comes in the early 1980s when the Reagan administration first came in. The disability community had just won major civil rights victories - the federal law that guarantees children with disabilities the right to attend public school, and provide supports and services, as well as the first nationwide civil rights law that protects disabled people against discrimination. Unfortunately, the Reagan administration moved quickly to try and roll back both of those key protections.
GORENSTEIN: Disability right advocates ended up winning that fight, and a key reason was this sort of ingenious two-pronged strategy, right?
NE'EMAN: That's exactly right. The first part of that strategy was massive mobilization. You had key advocates across the country mobilizing tens of thousands of people to write letters, show up at hearings, engage in aggressive activism. There were points in time where you couldn't walk down the hallway of the Department of Education without having to step over mail bags full of the tens of thousands of letters that had come from disabled people and parents across the country.
At the same time you also had this really interesting insider strategy, in which a number of advocates sought to reframe long-standing disability rights priorities in terms [that appealed to people] across the political spectrum. So, for example, you saw an ongoing effort to activate many socially conservative parents who saw support for keeping disabled children in their family homes as a reflection of family values. There's this fantastic quote