Editor’s Note: Rebecca Cokley is the director of the Disability Justice Initiative at the Center for American Progress. She served at the US Department of Education, US Department of Health and Human Services, the National Council on Disability and the White House during the Obama administration. The views expressed here are solely those of the author. Read more opinion on CNN.
As I watched the Supreme Court confirmation hearings of Judge Amy Coney Barrett last week, I couldn’t help but think how much her confirmation would hurt families like hers and mine.
Nobody questions that Judge Barrett loves her family, but it is a simple fact that whether she is promoted to the Supreme Court or not, she will have a level of guaranteed health care for life that many if not most disabled people can only dream of – especially if the Affordable Care Act is repealed.
President Donald Trump, who has nominated and championed Barrett, has challenged ACA in the courts (though he has, over the course of years and again recently, offered no concrete plan to replace it) and Barrett herself has strongly criticized the law and a subsequent Supreme Court decision that upheld it.
Like me, Barrett is the mom of a child with a disability. But that’s where our similarities end. I’ve spent the past 20 years studying and advocating for policies that will improve disabled people’s lives. I know the Affordable Care Act is the most significant legislation for the disability community since the Americans with Disabilities Act of 1990.
Barrett, on the other hand, though she noted during hearings this week she is “not hostile” to it, is on the record as disparaging a law that provided 20 million Americans with new health care coverage and which a majority of Americans want to keep. The vote to move Barrett’s nomination out of the Senate Judiciary Committee to the full Senate is scheduled for October 22, Election Day is November 3 and on November 10, the Supreme Court is scheduled to hear argument over whether the ACA should be tossed out.
Overturning the ACA will have devastating effects and a disastrous overall impact on families like hers, mine and the roughly two in seven families, according to census data, with at least one disabled family member. I know this, not only because of my work on disability policy, but because before the ACA, the lack of protections for people with pre-existing conditions had dire consequences for my multi-generational disabled family.
I have memories of my mom sitting at the dining room table in the 1980s debating leaving a job where her disability accommodations were denied and she was mocked and gaslit by coworkers. Ultimately, she decided she was not able to leave because there would be no way a new employer’s insurance company would cover her disabled kid (me) and recently paralyzed husband (my dad).
Our pre-existing conditions made us uninsurable. So, she stuck it out, and ultimately stayed there and was miserable at work until she died in 2005. She turned down career opportunities that might have been life changers, because in her mind, there was no choice. She had to do what was best for her family.
I’ve often thought about how her life would have been different if the ACA had been around in the 1980s and 1990s. The fact that ACA prohibits insurers from denying coverage due to pre-existing conditions means that she might not have had to choose between her job and her family’s survival.
Through my advocacy and policy work, I know there are millions of people like my mother out there, who without the ACA would be trapped in dead-end, low-paying or abusive jobs. Further, removing the ACA’s provision for young adults, who are able to stay on their parents’ plans until age 26, would put an enormous burden on the ability of disabled young people to stay in school and receive specialized services and supports.
Disability is also a cause and consequence of poverty. Two thirds of working-age adults in long-term poverty have a disability. Employment is one of the largest challenges for the disability community, and because health insurance is so tied to employment, this makes coverage for disabled people particularly complicated. But the ACA’s Medicaid expansion program, which is available in 39 states, has actually made it easier for many disabled people to work.
In states that expanded Medicaid under the ACA, employment for disabled people increased from 41.3 % to 47%. In states that did not expand Medicaid, it decreased. The ACA’s Medicaid expansion removed much of the red tape and eased the income requirements for people who want to work, but also need reliable health care. If the ACA is struck down, so is Medicaid expansion and 12 million people would lose their coverage.
Over the last 30 years, one of the biggest advocacy priorities of the disability community has been building the ability to live in one’s home and not a nursing home or other congregate setting. The Affordable Care Act contains the Community First Option program which supports seniors and people with disabilities living in their own communities. It is important to note that nursing homes are responsible for 40% of coronavirus deaths, so congregate settings truly are deadly for disabled people.
Another benefit of the ACA, one that specifically supports families of small children, is the end of the annual and lifetime caps or limits of the amount of coverage a person is insured for, until they have to pay out of pocket. I had six major surgeries by the time I was 6. I have friends whose children have had more operations than they can count on both hands by that same age.
The costs of those surgeries add up. Before the ACA was enacted I knew many parents who had a number in their head of what they could bear before losing their home or their life savings. At the same time families were fearing for the health of their child, they were forced to keep a mental tally, adding up the medical bills, praying they wouldn’t hit that number. Families and people with disabilities should not have to be in this position, but this will become the reality again without the ACA. And as a parent, I’m terrified.
Because Barrett (if confirmed) and other Supreme Court Justices may indeed overturn the ACA during a pandemic, millions more people may soon find themselves facing this exact scenario. Over 8 million people have contracted the coronavirus and the death toll is over 200,000.
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The impact of the virus on long-haulers is still being researched, but many individuals report significant respiratory effects and loss of cardiac function. These are likely disabilities that people will be living with, and needing medical care to treat, for the rest of their lives. Coronavirus survivors will also have a lifelong pre-existing condition that, if the ACA is overturned, insurance companies could use against them to deny coverage.
Health care continues to be the top issue on the minds of voters ahead of the 2020 election and given the ongoing state of the pandemic that is not likely to change for a long time. And the United States Senate is in the middle of confirmation hearings for a Supreme Court Justice who could throw the issue into greater chaos.
Republican Senators suggested that the impending lawsuit that could strike down the ACA is so intentionally cruel and meritless that Barrett would never side with it—despite the fact that President Trump and leading Senate Republicans support it.
I’ve spent decades fighting to ensure that my disabled children will not face the same obstacles as my disabled parents. With Amy Coney Barrett on the Supreme Court, everything and everyone I’ve ever fought for could be at risk.