Poverty is both a cause and a consequence of disability, an unsurprising fact considering that the significant expenses of health care make it the No. 1 reason individuals file for bankruptcy. One-third of GoFundMe donations are dedicated to health care expenses; this, too, is not surprising, given that the American Journal of Medicine reports that more than 40 percent of the 9.5 million people diagnosed with cancer between 2000 and 2012 had zero savings left after two years.
The Patient Protection and Affordable Care Act (ACA), enacted in 2010, was a game-changer for the disability community and was in some ways comparable to the Americans with Disabilities Act (ADA) in terms of the impact the law had on peoples’ lives. While much of the law’s importance has centered on its anti-discrimination protections for people with preexisting conditions—which do have a significant effect on people with disabilities and chronic health conditions—there are a multitude of lesser-known provisions that have had a life-changing impact on the United States’ 61 million people with disabilities and their families, both in terms of their health and their wallets.
On November 10, the Supreme Court is expected to hear oral arguments in California v. Texas, a lawsuit backed by the Trump administration and state attorneys general that seeks to invalidate the entire ACA—including its protections for people with preexisting conditions. The vacancy on the Supreme Court in the wake of Justice Ruth Bader Ginsburg’s recent passing has left President Donald Trump and the Senate majority scrambling to fill the seat with a conservative justice who will side with them in repealing the 10-year old law. If the ACA is repealed, the ramifications for people with disabilities and their families will be widespread and catastrophic—and dramatically exacerbated in the midst of a pandemic. As the Centers for Disease Control and Prevention notes, “[S]ome people with disabilities might be at a higher risk of infection or severe illness because of their underlying medical conditions.”
The same year that the ADA turned 30—and with policymakers from Sen. Elizabeth Warren (D-MA) to Sen. Chuck Grassley (R-IA) lifting up the goals of independent living, economic self-sufficiency, full participation and equality of opportunity—it is certain that disabled people will face untold chaos, risk, and harm under an ACA repeal. Repealing the ACA would cause many people with disabilities to lose access to affordable health care and protection under federal law, meaning they would face much greater risk of institutionalization, poverty, and even death.
Repealing the ACA would harm people with COVID-19
Individuals who have contracted the coronavirus will face unique health care needs both now and in the future. As scientists and those in the medical profession continue to learn more each day about the virus that causes COVID-19, it is increasingly clear that the long-term effects of the coronavirus are still unknown. More than 7 million people in the United States have been infected with the virus since March and, as such, would likely be considered by insurance companies to have preexisting conditions. Some COVID-19 “long haulers,” or those for whom the effects of the coronavirus have lasted months, are experiencing aggressive side effects of the virus, including paralysis, blood clots, respiratory distress, and cardiac disease. COVID-19 survivors are also finding themselves medical anomalies, facing not only confusion among medical personnel about best courses of treatment but also an inability to receive in-person peer support, a staple in the disability community that has been limited due to social distancing. If the ACA is repealed, millions of Americans who have had COVID-19 will likely find themselves unable to obtain or maintain insurance, as was the case for millions of Americans before the law took effect.
The White House and Senate majority failed to respond to the virus when it first emerged and are now actively working to destroy their health care in the courts and legislature, further affecting people with disabilities. The Safe to Work Act, backed by Sen. John Cornyn (R-TX) and 23 other Republican co-sponsors, proposes allowing employers to waive the ADA and other civil rights laws to discriminate against employees with a history of the coronavirus. The Leadership Conference on Civil and Human Rights called the Safe to Work Act “an extreme bill that would protect businesses at the expense of working people and the public by shifting the burden of the pandemic onto those who are most vulnerable to the health and economic impacts of this crisis.”
Repealing the ACA would lead to coverage losses among people with preexisting conditions
First and foremost, repealing the ACA would roll back anti-discrimination protections for people with preexisting conditions. It is not commonly understood that people with preexisting conditions are regarded as people with disabilities under the ADA, meaning they are covered under the ACA’s anti-discrimination protections and the reasonable accommodations that come with it.
This provision also made it easier for people with disabilities to leave a job and find another one without fear of being denied insurance coverage or jumping through arduous hoops to get covered. People with disabilities no longer had to weigh serious concerns about accessing coverage—which in the past may have caused them to stay in a job that paid poorly or that they had advanced beyond professionally or even to take a job out of state that offered the benefits they needed. The ACA helped guarantee the disability community was not disproportionately penalized when pursuing a career based on their own desires and personal choices rather than out of fear of losing health care. Repealing this law in the midst of a public health and economic crisis would mean a drastic curtailment of autonomy for millions of people.
Repealing the ACA would hurt young people with disabilities and may mean a return to conversations about institutionalization
Under the Individuals with Disabilities Education Act, students with disabilities can continue to receive K-12 education services until the age of 22. Prior to the ACA, children were typically removed from their parents’ insurance coverage at the age of 19; if they were enrolled in college, they could sometimes remain on their parents’ insurance. Upon the passage of the ACA, children were allowed to stay on their parents’ insurance until the age of 26, a huge positive shift for families of people with disabilities. If the ACA is repealed, those children who live with preexisting conditions may not be insurable, meaning that they and their families may be forced to pay out of pocket for the care they need.
They may also be forced to make tougher choices, ones that previous Supreme Court decisions such as Olmstead v. L.C. were crafted to help eliminate. Considering the progress that the ACA has made for people with disabilities, an ACA repeal may force families to have to consider institutionalizing their loved ones, rolling back decades of progress in society’s inclusion of disabled people. Disturbingly, the president has praised the concept of mass institutionalization for people with mental illness, despite the United States’ positive steps in recent decades toward deinstitutionalization. In the midst of an economic crisis with extremely limited opportunities to regain coverage through employment, this would leave many people with no options for coverage even as a pandemic rages.
The ACA supports survivors of interpersonal or gender-based violence, many of whom are disabled
Survivors of interpersonal or gender-based violence, many of whom have disabilities, may also find themselves in an untenable position, unable to leave an unhealthy relationship if they are dependent on a partner, spouse, or family member in order to access insurance. This is particularly true for disabled people whose abuse may be complicated by the additional power dynamics of a partner, spouse, or family member providing not only economic but also caregiving or physical support. The ACA provided a way out for people with disabilities in abusive relationships that didn’t require them to sacrifice their health care. Studies have already found an increase in domestic violence during the pandemic, making the ACA all the more critical.
Repealing the ACA may mean a return to annual or lifetime caps on coverage
Prior to the passage of the ACA, insurance companies could enact annual or lifetime caps, or limits, on the benefits policyholders received. Depending on the severity of someone’s disability, or the age at which they acquired it, they could hit their lifetime cap at an expedited rate. This was common for young children with significant disabilities. The fear of an ACA repeal is also a fear that coverage caps will increase the likelihood of institutionalization. Making families pay for all additional medical costs above annual or lifetime limits would force them to make an unconscionable choice between the right of people with disabilities to live in the community, as established in Olmstead v. L.C., and families’ ability to pay for it. For survivors of COVID-19, ongoing health care costs will be highly unpredictable, as the virus’s long-term health effects are only beginning to be understood.
Medicaid expansion, made possible by the ACA, has expanded care and increased employment among people with disabilities
The ACA also allowed states to expand Medicaid, extending eligibility for the program to people with incomes up to 138 percent of the federal poverty level. This has allowed many more people with disabilities to access health care without having to go through the long process of disability determination. It has also allowed people with disabilities who have slightly higher incomes to access benefits.
Medicaid expansion has also increased employment rates among people with disabilities. Prior to expansion, people with disabilities had to go through the disability determination program and meet stringent income and asset limits for coverage. This prevented many people with disabilities from entering employment or returning to work after acquiring a disability due to the fear of making too much money to access needed health care. In states that expanded Medicaid, employment of people with disabilities increased from 41.3 percent to 47 percent, compared with a decrease from 43.5 percent to 41.4 percent in states that did not. Indeed, many of the states that are continuing to battle the pandemic—including Ohio, Pennsylvania, West Virginia, and California—each have hundreds of thousands of enrollees in Medicaid expansion.
Community First Option
The repeal of the ACA would also affect the Community First Option, which gives states the ability to provide home- and community-based services to eligible Medicaid enrollees under their state plan. This is a critical piece of the infrastructure that supports the ability of disabled people to remain at home in their communities. These programs are grounded in person-centered planning, and services are directed by the individual, not the agency. In eight states—California, Connecticut, Maryland, Montana, New York, Oregon, Texas, and Washington—392,7000 individuals would lose services totaling $8.7 billion per year if the ACA were repealed.
Repealing coverage for essential health benefits would put people with disabilities at risk
The ACA includes 10 categories of services, known as essential health benefits, that plans must cover; two are mental health services and treatment for substance use disorders, including behavioral health. Mental illness and substance misuse are both considered disabilities under the ADA. Under the ACA, 32.1 million people gained access to these critical services.
Another critical essential health benefit focuses on chronic disease management, providing standard coverage for diseases such as diabetes, hypertension, and high cholesterol. This is critical given that these disabilities make the individuals who live with them more susceptible to contracting the coronavirus. Chronic diseases are also caused by, and are the consequences of, systemic racism given the impact that certain social factors—including where one lives and the jobs one has access to—have on one’s health and overall access to health care. A repeal of the ACA would limit the availability of coronavirus treatments and exacerbate the effects of systemic racism in the health care system, as it would further limit people’s ability to gain comprehensive coverage. The confidence that basic medical needs will be covered is all the more imperative during a pandemic in which individuals taking due health precautions is pivotal to stopping the spread of the virus.
One of the most important essential health benefits for the disability community is prescription drug coverage. For seniors, people with disabilities, and people with chronic conditions, medication costs can skyrocket without warning year after year. The ACA provides specific relief for those individuals with the highest prescriptions drug costs, who used to fall into the “donut hole,” meaning the coverage gap where individuals become personally responsible for the out-of-pocket costs of their medications.
Conclusion
The attack on the ACA is an attack on people with disabilities and their families—and a particularly vicious one during a public health crisis. Should the Supreme Court repeal the legislation, the choices that the disability community will have to make are unconscionable and unforgiveable, rolling back decades of progress. The United States’ days of being a beacon for the rest of the world in terms of its inclusion of disabled people will be over, and millions of disabled people will suffer or die.
Rebecca Cokley is the director of the Disability Justice Initiative at the Center for American Progress.