What the Affordable Care Act Means to Me as a Young Disabled Woman

The Affordable Care Act (ACA) revolutionized healthcare for Americans with disabilities. I can attest to this because it changed the trajectory of my life and many of my friends’ lives. Yet, in recent years, it has faced challenge after challenge in the courts. And while it seems likely to survive the latest case – two conservative Supreme Court justices indicated that they would support upholding key provisions of the law after a hearing in November – these threats are frightening nevertheless.

The ACA prohibits insurance companies from denying patients coverage or charging them a premium based on a preexisting condition, which is uniquely beneficial to disabled people who, prior to the law’s passage, had to live in fear of what might happen if they lost their job. The ACA also ensures that insurance plans cover some core benefits, which is crucial considering how quickly medical expenses can add up and place a financial strain on disabled people, particularly if they struggle to find employment. Many disabilities require surgeries, personal care attendants, mobility aids, therapies, medications, and medical equipment – all of which come at a cost.

Additionally, the law prohibits insurance companies from placing annual or lifetime caps on people who require long-term or expensive care. For people who have chronic illnesses or permanent disabilities, this is life changing. Most people cannot afford the services they need, and no one should be penalized for having health issues. For many disabled people, this means freedom. Having their care funded means having one less financial burden; it can be the difference between living with their parents and getting their own place.

The ACA also made it possible for people like me to stay on a parent’s health insurance until age 26. I’m a 23-year-old college graduate who works from home and lives with her parents. I would love to move into my own apartment, but with COVID-19, it isn’t in the cards for me currently. I work as a freelance writer, pitching to different publications, and I also have an unpaid position as a staff writer for Cripple Magazine. I don’t have insurance from my employer (freelancers don’t receive workplace benefits), so I’m on my mother’s insurance, which I desperately need.

I have a neuromuscular disorder called cerebral palsy, and I use a power wheelchair and crutches to get around. Power wheelchairs cost thousands of dollars and often require maintenance work. I also need a personal care attendant for one hour a day to help me shower and dress. This can cost up to $35 a day for me, an expense that my nondisabled peers do not have. For other disabled people, personal care services are even pricier. People who cannot feed themselves or use the toilet by themselves often require 24-hour services. It isn’t a need that I brought on myself, and it isn’t a need that other disabled people brought on themselves. It’s just my reality as a disabled person.

My current income cannot cover these costs, and it isn’t for lack of trying. I consistently search out new job opportunities and apply to different jobs around the country. Luckily for me, my mom’s insurance covers most of my medical expenses. But when I turn 26 and age out of her coverage, I’ll likely need Medicaid. As long as the ACA remains in effect, I won’t have to worry that my insurance won’t cover the care I need.

As a disabled woman, I’ve felt like my rights have constantly been under attack these past four years. Between Congress repeatedly threatening to gut the Americans With Disabilities Act (ADA), the president promising to do away with the ACA, and a political climate that has dehumanized disabled and other marginalized folks, I spent much of my college career unsure if I’d be able to return the next year. The ADA and ACA enabled me to attend the college of my choice, which was out of state – a privilege that many disabled people before me didn’t have. I was fortunate enough to be able to graduate. Without the fierce disabled activists who came before me, I wouldn’t be where I am today.

These pieces of legislation were designed to protect people who have conditions that nothing of their own volition caused. The COVID-19 pandemic has shown just how quickly a person’s life can change, as more and more Americans contract an illness that has the potential to cause long-term harm. Perhaps now more than ever, we need to ensure that people have the support they need.