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How Disabled Americans Are Fighting the GOP Health-Care Bill

Advocates warn that the American Health Care Act would “annihilate” Medicaid, spiraling millions of disabled Americans into poverty.

By David M. Perry


Kent Keyser talks about how the repeal of Obamacare would negatively affect him and other disable people during a news conference outside the U.S. Capitol on March 9th, 2017, in Washington, D.C. (Photo: Chip Somodevilla/Getty Images)

Within hours of Paul Ryan’s announcement of the American Health Care Act, press releases from disability rights organizations started to appear in my mailboxes and social-media feeds. The messages were consistent. First, the AHCA’s approach to Medicaid reform would end the program as we know it, spiraling millions of disabled Americans into poverty or back into institutions. Second, these advocates warned that too many Americans — including some who are disabled themselves or care for people with disabilities — don’t understand just how important Medicaid has been for improving millions of lives.

There are plenty of problems under the law as currently drafted, and disabled Americans in particular should have many concerns, as documented by s.e. smith for Esquire. The main concern among advocacy groups, though, is over the proposal to make Medicaid a capped, “per capita” system. Right now, states receive a certain amount of money based on how much they actually spend. The per capita system would allocate a set amount of money per person, regardless of how much meeting the needs of that person actually costs the state. The move would represent a huge transfer of costs to states, a transfer that would punish those most in need, as costs rise but resources remain fixed.

So what are people doing about it? The bill is making its way through three House committees at reckless speeds, and the disability rights world is mobilizing to fight back. Stephanie Smith Lee, senior policy advisor for the National Down Syndrome Congress, says there’s no reason to give up hope. “It appears to be on a fast track to be voted on without hearings,” she says, “but it’s not a done deal.” The thing most likely to change the trajectory, she says, is personal stories.

On Wednesday morning, the Center for American Progress hosted “What’s at Stake for Americans With Disabilities in the Trump Era?” to try and provide some of those stories. Anastasia Somoza, who became widely known after she spoke at the Democratic National Convention last summer, gave the keynote address, in which she linked the support she receives from Medicaid to her ability to succeed at life as an independent young woman. Somoza says that she’s been taking that message to Congress, hoping to put a human face on the numbers. “If we have any shot of convincing people” she says, “we need to remind everyone of the human impact.”

The panelists — a diverse group of disabled and non-disabled speakers with varying types of expertise — joined Somoza in meshing individual stories with the big policy picture. For example, in both a prepared video and her remarks, Andraea Lavant, inclusion senior specialist at Girl Scouts of Nation’s Capital, made it clear that she’s more than capable of living independently and holding down a job, but she does need a professional to get her day started and finished. Medicaid provides that professional.

“The disability community is a hand with many fingers,” Ne’eman says, “but what’s happening right now is that they are all closing together into a fist.”

Peter Berns, CEO of The Arc, the largest national organization advocating around developmental and intellectual disability, says that this kind of storytelling matters because so many people just have no clue how disability supports work. He says that organizations like his have tried to be “so careful about not playing the pity card, trying to present everything about people with disabilities in a positive way, all about opportunity and achievement. We tend to hold back on depicting the dire consequences or the potential for the dire consequences.”

This attack on Medicaid, in particular, is so dangerous that Berns wants to “message more sharply about the harm that is going to happen to people if some of these proposals go through.”

“We have to be willing to express our opinion about what is going to happen,” Berns says. “We think [the AHCA] is going to mean more people are going to be denied services. We think this will create incentives for more states to go back to institutional models of care.” The Arc is pouring resources into this fight, while trying to bring its 660 chapters from around the country to join together. A recent press release took a strident note, unusually so for this consensus-driven organization, claiming that, under the AHCA, “Medicaid will be decimated.”

Ari Ne’eman, who participated in the CAP panel, has an even grimmer view. “Medicaid will be annihilated,” says Ne’eman, who served as a disability appointee in the Obama administration and currently runs “There is no scenario,” he says, “with cuts of this level and scope, in which people with disabilities won’t be substantially hurt.”

Amber Smock, director of advocacy at Access Living, posted on a closed Facebook group (quoted with her permission) that the Hill was “busier than I have ever seen it.” She notes that lots of different groups are lobbying against the bill, including Paralyzed Veterans of America (who have been tweeting out their meetings). Even the AARP, which is not always known for taking disability rights position, mentioned long-term supports and services as an issue.

Ne’eman agrees. “The entirety of the disability community, people with developmental disabilities, physical disabilities, psychological disabilities, veterans, seniors, are are all coming to the table to condemn and push back against these utterly wrongheaded proposals,” he says.

This kind of unity will be essential in the battle ahead, as the Republicans are going to try to play vulnerable groups off each other. House Majority Leader Kevin McCarthy put out a press release with a story of a disabled girl named Skylar whose family needs Medicaid, but is stuck on a waiting list, allegedly thanks to Obamacare. In McCarthy’s telling, massive cuts — it’s not really clear how — will make it easier for Skylar by booting lots of less deserving folks off the Medicaid rolls. Divide and conquer can work, but it might not this time, given the magnitude of the threat and these initial signs of unity.

“The disability community is a hand with many fingers,” Ne’eman says, “but what’s happening right now is that they are all closing together into a fist.”