When Ari Ne'eman heard Robert F. Kennedy Jr.

In a press conference on April 16, top U.S. health official Kennedy continued to claim that children with autism will “never pay taxes” or “hold jobs” and that their condition is preventable.

"This is the reward for the way people talk about autism 25 years ago," Neyman said.

Ne'eman knows this history well because it is a Harvard health policy researcher who lives as a person with autism and has shaped it as the co-founder of the Autism Self-Advocacy Network.

Neiman told trade off When we sat down recently for an interview about drastic policy changes in Washington. “But I still have hope.”

He said he gained much of the hope from the success of the forthcoming book.

"The Americans with Disabilities Act and many other priorities exist only because people with developmental disabilities, physically disabled, blind, deaf, mentally ill and many other categories decide that we have to hang separately or we will definitely hang separately," Neiman said. "The word disability is the same alliance as people of color or lgbtq."

Here are the highlights from our extensive conversation that has been edited for length and clarity.

Dan Gorenstein: Why are the bets on people with disabilities particularly high at this moment of how our healthcare system changes?

Ari Ne'man: Therefore, Americans with disabilities do have a unique challenge because they are often devaluated and depreciated by the health care system. But, at the same time, they are in great need of health care. Some of them are medical services that are very familiar to people, such as prescription medications or doctor visits. But, I'm going to say, there are unique needs - people who help you use the bathroom, people who help you find and keep your job. These are often very intimate and very personal support, without which one cannot live.

Ultimately, for many people with disabilities to survive and thrive on their own terms, some very expensive, ongoing assistance is needed. For people with developmental disabilities (such as Down syndrome, autism, cerebral palsy), family and community-based services are usually $40,000 or $50,000 per year.

So it is absolutely crucial to have a service system that is fully financed and responds to people’s desire to live.

Gorenstein: You call it a "service system", Ari has now won some real success in Washington.

For example, the Trump administration has already Demolition of federal agencies Committed to helping older and disabled Americans live independently.

So are Republicans in Congress Planning to go deeper into Medicaida public health insurance plan covering approximately 15 million Americans with disabilities.

Have the disabled community faced potential cuts before?

Neman: The most notable comparison was the first entry of the Reagan administration in the early 1980s. Disabled communities have just won a major civil rights victory - Federal laws that guarantee children with disabilities have the right to go to public schools and provide support and services, as well as a national civil rights law that protects people with disabilities from discrimination. Unfortunately, the Reagan administration acted quickly to try to back down these two key protections.

Gorenstein: The key reason why disability rights advocates eventually won the battle is this clever two-pronged strategy, right?

Neman: That's completely correct. The first part of this strategy is mass mobilization. You have key advocates across the country, mobilizing tens of thousands of people to write letters, appearing at hearings, engaging in aggressive actions. At some point, you can’t walk along the corridors of the Ministry of Education without having to cross mail bags filled with tens of thousands of letters from people with disabilities and parents across the country.

At the same time, you also develop this very interesting internal strategy, where many advocates try to reframe the long-standing disability rights focus (to attract people). So, for example, you see an ongoing effort to activate many socially conservative parents who see support for children with disabilities in family homes to reflect family values. In my book study, I came across this great offer, talking to someone who was very active on the hills in the 1980s, and he said, “When I saw the Republican women in the Hallston lawsuit appear in the Hallston lawsuit, there was a rollback to lobbying for special education rights, and I knew it was over.”

Gorenstein: Do you think a similar script will work this time? Do you see advocates using it?

Neman: In a way, you are seeing this now. Disability has been affected in both Medicaid defense and efforts to revoke the Ministry of Education’s efforts. And the reason for this is a dark reality: There are a lot of people in this country saying that when you say “this hurts race and ethnic minorities or LGBTQ communities” their response is frightening, “Okay. That’s what I plan to do.” But many of them are still affected (if you say): “this hurts people with disabilities.” It’s an unfortunate reality, but it’s a reality that currently exists in American politics because people with disabilities are a constituency that still has cross-attractive appeal.

Gorenstein: So, Ari, we've talked about what advocates did in the 1980s and what they're doing today to delay potential budget cuts.

But I want to know how you as a researcher plan to track these cuts. What are the evidence you will be looking at about the impact of these policy choices on humanity?

Neman: First, I will roll back the (impact) in support of people with disabilities and seniors staying at home and in the community without having to go to nursing homes or other institutions. And, if we do see a significant pullback in Medicaid funding, these services are likely to be the first to appear on the chopping block.

As a result, I was worried that three things would happen. First: People with disabilities will eventually be forced into nursing homes and institutions. Second: Family members, especially women, are more likely to be disengaged from the workforce to provide unpaid care. Then ranked third, I think we might see more unmet healthcare needs.

Gorenstein: I have to ask you about Secretary Kennedy Recent announcements That calls autism "preventable."

He also promised to investigate the "environmental toxins" he believes are rising autism rates.

You are autistic and you are a researcher. What did you do with this announcement?

Neman: I have to be honest, I think my first thought was, “Oh God, not this.” Secretary Kennedy’s approach was particularly unwise, but in some ways, it’s an extension of a long-standing problem.

In many government processes, we have seen autism research disproportionately focus on biological issues. So, for example, in 2020, the country spent $418 million on autism research. Only 8.5% of these were used to study how to improve service quality and support people with autism.

I think this is unfortunate - not because studying the effects of autism has no effect, but because there is an imbalance. When the average autistic person or family member of autism wakes up in the morning, they don’t ask themselves, “Have they found new biomarkers?” They ask, “Is there a better strategy to help me or my loved one live independently to include the workplace in general education classroom?” We really should attribute it to people, responding to this agenda in some way.

Dan Gorenstein is the executive editor and Leslie Walker is trade offa nonprofit news agency that reports on the toughest options for healthcare. You can also register to weigh Weekly newsletter To get the latest stories in your inbox every Thursday morning. To listen to Ari Ne'eman for more information, listen to the full trade-off podcast episode below.