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Tuesday, November 15, 2016

I’m a disabled American. Trump’s policies will be a disaster for people like me.

From Vox

By Ari Ne'eman
November 9, 2016

It’s the early hours of Wednesday morning, and I’m watching my friends fear for their lives on Twitter. We’ve just learned that Donald J. Trump will be the next president of the United States.

People are talking about the likelihood that they’ll lose health insurance when the Affordable Care Act is repealed, the fear that the attendant who helps them get dressed in the morning will no longer be available when Medicaid is slashed, the possibility that their conversations with their therapist may no longer be private, the impossibility of paying out of pocket for the medications, in-home care, assistive technology, and other essential parts of disabled life.

Like many other people with disabilities, we’re terrified by the prospect of a Trump administration and what it may bring to people like us.

Much has been made over (now President-elect) Donald Trump’s mocking of disabled New York Times reporter Serge Kovaleski last year. Spurred by the widespread outrage at Trump’s cruelty, the Democratic National Committee made disability rights a high-profile theme of its 2016 convention.


But for most disability rights activists and disabled people I know, the choice to oppose Trump had relatively little to do with his mockery of Kovaleski — or his alleged description of deaf actress Marlee Matlin as “retarded,” or even his efforts to kick disabled veteran street vendors off public sidewalks near his buildings. None of us were particularly thrilled by these things, mind you, but they didn’t determine our votes.

What mattered — and matters — to us was policy. Hillary Clinton offered clear, specific, and timely policy proposals to expand the social safety net and civil rights of people with disabilities, while Trump made clear his intent to slash services and roll back legal protections.


For the millions of Americans with disabilities who depend on Medicaid and the Affordable Care Act to access the health care and public services that mean basic survival, it is policy — not personal insult — that has brought terror and despair in the aftermath of last night’s Trump victory.

It’s hard to know what a Trump presidency will bring, given our new president-elect’s penchant for playing fast and loose with the details of public policy. At no point during the election did Trump issue anything resembling the comprehensive white papers offered by the Clinton campaign on issues like autism, Alzheimer’s, mental health policy, and other segments of the disability community.


Yet the Trump campaign did put forward a number of specific commitments relevant to disability, scattered throughout the candidate’s statements and his health care policy platform. With the man now about to become the leader of the free world, it’s worth looking at the impact Trump’s policies would have on Americans with disabilities (should he follow through).

Trump plans to slash the main source of federal financing for disability and aging services.

The vast majority of disability services are paid for by the Medicaid program, the state-federal partnership best known for its role in providing health care for low-income Americans. In 2014, Medicaid spent approximately $151.8 billion on support services for seniors and people with disabilities — 53 percent of which was spent to keep those receiving support in their own homes rather than in nursing homes or institutions.

These services are a lifeline for people with disabilities, seniors, and their families. They can mean the difference between life or death — or the difference of a family member needing to quit her job to provide uncompensated care. Over the past 20 years, federal officials and advocates have worked together to promote community integration and in-home care for those receiving support, inspired by a 1999 Supreme Court decision that ruled that disabled Americans have a right to receive care outside of the segregated environments of nursing homes and institutions.


To encourage states to expand in-home care, the federal government has offered carrots and sticks — from increases in the allotted federal match for state expenditures on such services to civil rights enforcement from the Department of Justice.

Unfortunately, Trump has proposed to block-grant Medicaid in his health policy platform. Such a measure would fundamentally change the nature of the program. Today, Medicaid matches each dollar spent by a state government with a dollar from the federal government — sometimes several times that, for states with higher percentages of low-income residents.

Under a block-grant, states would simply receive a lump sum for Medicaid, with no additional funds should they expand their commitment and no real ability for advocates to use federal incentives to push for freeing seniors and people with disabilities from institutions and other segregated settings.

Block-granting Medicaid would also drastically reduce funding to the program over the coming decade. Assuming Trump intends to pursue a similar block-grant proposal to the one advanced by House Republicans this past year, block-granting would slash federal Medicaid funding by as much as $1 trillion between 2017 and 2026. By the 10-year mark, federal funding would stand at only two-thirds of its current level, according to the Center on Budget and Policy Priorities.


Not only would this effectively doom the chances of the hundreds of thousands of disabled adults now on waiting lists for in-home supports, but it would likely result in considerable service cutbacks to those now receiving care.

It’s frightening to think of how this could play out. Under the current system, Medicaid is an open-ended commitment — federal financing is guaranteed, and in exchange, states must provide care to all who are eligible. If block-granting proceeds, it would enable state officials to kick disabled adults and children out of life-preserving services for reasons of budget constraints, pressure from influential providers seeking to promote other business models, or any reason at all. Under a block grant, disabled Americans might effectively lack any rights to support services under federal law.

Block-granting has long been on the GOP’s policy wish list. With Republican majorities in both chambers of Congress, this is one wish Trump finally has the power to deliver.
Trump plans to eliminate critical legal protections for disabled people in the health care system

Of course, President Trump will be able to finally accomplish the Republican Party’s most heartfelt desire: repealing (and hypothetically replacing) the Affordable Care Act. For the low-income Americans who depend on the ACA’s insurance subsidies or Medicaid expansion for affordable coverage, this will be a disaster.


For Americans with disabilities who depend on the law’s end to pre-existing condition discrimination, it will be an unprecedented loss of both health care and civil rights.

When the Americans With Disabilities Act passed in 1990, advocates were forced to compromise and continue to allow disability discrimination in one particular arena: health insurance. At the time, the economics of health insurance were such that ending “medical underwriting” — the practice of charging more or denying coverage based on a disability or other preexisting condition — would collapse the industry.


It was only with the introduction of the Affordable Care Act and its individual mandate that eliminating disability discrimination in insurance became feasible. In that sense, the Affordable Care Act completed the nondiscrimination requirements of the Americans With Disabilities Act, more than two decades later.

With President Trump committed to eliminating the ACA and the individual mandate that allows for an end to preexisting condition discrimination, it seems inevitable that millions of disabled Americans will once again lack meaningful access to the private insurance market. As someone who had planned to get coverage from the ACA’s marketplaces this coming year, the potential loss of these protections fills me with concern.

Trump has also shown signs of affinity with the growing movement among congressional Republicans to weaken the Health Insurance Portability and Accountability Act privacy rights of people with mental illness. His website’s health policy platform references “promising reforms” to enable family members to access their relatives’ mental health records — a likely reference to Representaative Tim Murphy’s (R-PA) ongoing efforts to weaken HIPAA privacy protections, expand forced treatment, and hog-tie legal aid organizations funded to serve people with psychiatric disabilities.

Motivated by a desire to show congressional action after high-profile mass shootings, a number of GOP politicians have supported legislation that would drastically limit the degree to which people with mental health conditions could limit private medical information flowing to family members. As with so many other areas, mental health policy under President Trump is likely to grow more coercive, with little to no concern for the rights of those most vulnerable.


Trump may be about to set back federal autism policy by at least a decade.

Trump has not been shy about his support for the thoroughly discredited idea that autism is caused by vaccinations. As early as the second GOP primary debate, Trump linked autism to vaccines, going on to spout the long discredited idea that “autism has become an epidemic. … Twenty-five years ago, 35 years ago, you look at the statistics, not even close. It has gotten totally out of control.”

Of course, this is not true — not only has the autism-vaccine link been shown to be false, but a growing body of scientific evidence shows that autistic people have always existed in approximately the same proportion of the general population, rather than constituting a recent epidemic. But while Trump’s comments on autism have little scientific legitimacy, they have tremendous political relevance.

Over the past 10 years, federal autism policy has witnessed a sea change. As autistic self-advocates (those of us who are autistic ourselves) began to play a bigger role in autism policymaking, discussion began on the need to shift from an overwhelming emphasis on causation, biology, and cure to promoting new investments in services, educational methodologies, and assistive technology.

Many policymakers took note of the objection from large segments of the autistic community to attempting to “cure” autism, hearing our preference to instead focus on improving the opportunity for autistic people to develop skills and lead successful lives as autistic adults.


At the behest of advocates like me, Congress changed the nation’s premier autism statute from the Combating Autism Act to the Autism CARES Act, denoting a shift toward a greater emphasis on services rather than trying to make autistic people look and act “normal.”

It’s long been clear to autistic activists that Trump is aligned with the most reactionary forces in the autism community, who would prefer that none of these changes take place. He enjoyed endorsements relatively early in the cycle from prominent anti-vaccine activists who adamantly oppose recent shifts toward a more progressive autism policy.


Bob Wright, the founder of the powerful and often reviled Autism Speaks charity (who is known for his own anti-vaccine leanings), tweeted his enthusiastic support in April. Now that Trump is poised to take the presidency, he will likely turn to these early allies to fill key roles in his administration relevant to autism and disability. The potential outcomes are frightening.

Disability activists have faced down conservative attempts to roll back disability rights before — and won.

In 1981, the newly sworn-in Reagan administration came to Washington with the stated goal of eliminating pesky federal regulation — and new disability rights laws were squarely within its crosshairs. After a failed attempt to repeal the 1975 Education for All Handicapped Children Act (which guaranteed children with disabilities the right to access public schools for the first time), the Reagan administration moved to weaken the law through regulation.


A massive backlash ensued, led by the Disability Rights Education and Defense Fund’s Pat Wright and the Disability Rights Center’s Evan Kemp Jr. The ultimate result: More than 40,000 cards and letters from disabled people and family members sent to the White House. Shortly afterward, the Reagan administration backed off trying to change special education law. It would not try again.

Another effort by Reagan to remove people from the rolls of the Social Security Disability Insurance (SSDI) program was more successful — for a time. In 1981, the Reagan administration ordered a review of more than 1 million SSDI cases, prompted by concerns that the program had grown from a $3.1 billion to a $15.5 billion price tag between 1970 and 1980.

Again, disability advocates mobilized en masse, with advocacy groups and friendly members of Congress publicizing suicides due to disabled people losing their benefits and calling attention to the relatively cavalier approach undertaken by the Reagan-era Social Security Administration (by 1987, 63 percent of the 315,910 removed from benefits were determined to be improperly denied and had their cash payment under the program restored).

Subsequent class-action litigation won beneficiaries the right to appeal and reapply for benefits after a federal judge ruled that the government had inappropriately removed from benefits individuals who had no change in the severity of their disability. By 1983, advocates had successfully pushed through a law ensuring that disabled beneficiaries could keep their benefits while appeals were underway — with Reagan pulling back on further efforts to purge the program and paying lip service to “truly deserving” disabled people.

Just as 1980s disability advocates successfully defeated Reagan’s attempted rollback of federal disability programs, the current generation has the opportunity to do the same to President Trump.


The Trump presidency will be a disaster — but even a disaster presents certain opportunities.

Still, I won’t pretend that the aftermath of the 2016 election isn’t leaving people with disabilities feeling like Charlie Brown trying to kick the football before Lucy pulls it out from under him. It’s galling to face the prospect of President Trump in the same year that brought landmark advances in the visibility and priority placed on disability rights.


In the space of a few hours, we went from planning how to make sure President Clinton lives up to her campaign promises to planning a desperate fight to make sure President Trump does not live up to his.

And yet, as in all such things, there is opportunity in disaster. Our imminent Trump presidency is likely to be a calamity for a broad swath of Americans — and liberal and progressive activists will respond by seeking to attack Trump on every front available. For a disability rights movement that’s often seen as the orphan stepchild of progressive advocacy, there’s a chance to better integrate disability into the liberal pantheon of diversity, identity, and protected class.


By better highlighting how disabled Americans will almost certainly suffer under Trump policies, disability activists can familiarize the advocates and policymakers who will form the nucleus of the next Democratic administration with our needs and our values.

Just like the George W. Bush administration’s crusade against same-sex marriage helped to normalize the role of the LGBTQ movement under the civil rights umbrella (and within the Democratic Party’s political coalition), it may very well be that disability rights activists will achieve greater solidarity from other progressive groups after four years of shared opposition to the outrages of President Trump.


Compared with the potentially game-changing strides forward promised by the Clinton campaign, this is cold comfort — but it is something we can cling to as we prepare for the fights to come. With the lives of millions of Americans with disabilities at stake — as well as those of people of color, Jews, Muslims, low-income persons, LGBTQ Americans, and members of other marginalized groups — we need all the silver lining we can find. The next four years will be difficult ones.

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Ari Ne’eman is the president of the Autistic Self Advocacy Network and served as one of President Obama’s appointees to the National Council on Disability from 2010 to 2015.

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