Here’s what preexisting conditions exclusions will do to the disability community
I was, as we know, not a fan of ACA when it was put into play. I felt that it had been unnecessarily diluted and wouldn’t be as protective as it should be. I was right, but even at the time, I also had to admit that it was an improvement over the existing system. In particular, the provisions barring rescission and discrimination against people with pre-existing conditions were critically important, and as the government threatens to ‘reform’ the ACA, things are looking dire for disabled people.
Let’s say Republicans achieve the holy grail of repealing the ACA and its various protections. A whole lot of disabled and chronically ill people are likely to immediately lose coverage because insurance providers will be able to add rescission clauses to their contracts, and then execute them. Right now, it’s not legal to drop someone for getting, or being, sick. In the future, that could change.
Okay, well, go get new health insurance. Not so fast. Insurers that want to reduce their risks are naturally going to want to limit the number of people who could become highly active health insurance users in their pools. With a repeal, they would be allowed to refuse to cover people with pre-existing conditions, or charge very high rates. Likely the various subsidies and exchanges, as well as Medicaid expansions, would disappear as well, so people might not be able to afford health insurance and they wouldn’t be able to get on government care either.
Health insurance is not health care. But it is very hard to access health care without health insurance, and that’s especially true for disabled people, who often have complex medical needs that are extremely expensive to manage. These can include medications, routine medical procedures, regular specialist visits, surgeries, emergency care, and maintenance for durable medical equipment. There are disabled people now who are trapped in their homes because they don’t have operable wheelchairs and/or lifts. That’s not going to get better by limiting access to insurance.
Chillingly, one result of Obamacare was that more disabled and chronically ill people came out of the shadows and got coverage. They also started using it, establishing a formidable paper trail documenting the full extent of their conditions. This wasn’t a problem in a health care era when you actually wanted that robust documentation to help your care team work with you, and when you might need it to document eligibility for various programmes and services. It made sense to go to the doctor for routine health care for a variety of things, because that was why you had insurance.
Now, those same records are going to work against disabled people. People who fought hard and went through the process of getting diagnoses will have them used against them when they try to apply for health insurance (and if they attempt to immigrate). People who never got diagnoses but do have medical charts that are miles thick thanks to all the care they’ve received are going to be equally disadvantaged. Obamacare incentivised going to the doctor, getting treatment, documenting that care, and working on preventative measures to help people take control of their health. Now, people are about to be punished for doing all of that.
This has really serious consequences. It’s not just that some disabled people will be unable to afford health insurance or cash payments for care, or that they could become even more poor than they already are. People who can’t afford care don’t magically get care anyway: At some point, credit runs out, bills come due, and services aren’t provided except on an emergency basis to stabilize critically ill patients. That means that disabled people left in the cold by a repeal will get sicker and sicker, and less and less stable, because that’s the only option open to them. They won’t be able to afford preventative and maintenance care, and they’ll get dumped in ERs, treated, and released again in an endless cycle that could have been easily prevented with pretty minimal government investment.
They will also die. Fundamentally, access to health care determines longevity, but also short-term health outcomes. People with chronic conditions who depend on medical interventions to thrive will die, yes, even with emergency stabilising care (and it’s ludicrous to act like it’s reasonable to expect people to rely on emergency care and be grateful for it). Before ACA, disabled people died for lack of care, and they kept dying during ACA, even with better coverage options available for many people. If it’s repealed, the situation could be worse thanks to the large number of people with lengthy medical histories who will not be able to get insurance anywhere, and won’t be able to get care, because it’s so costly they can’t afford it and/or specialists they need to see won’t even take cash patients.
Along the way, they’ll be the threatened ‘drain on the system’ that everyone likes to bleat about. People who cannot afford health care are less able to accomplish tasks of daily living, to live independently, to build lives for themselves. They are more likely to need costly government interventions that cost far more than it would to just provide them with health care. Even for those who think that disabled lives are not inherently valuable, even for those who think that disabled people should be left to shift for themselves, the high costs here should be cause for concern, and this is what they are asking for by clamouring for the government to put an end to the ACA.
This is why I am furious about ongoing ACA repeal conversations where people appear willfully determined to avoid saying the D-word. Disabled people are the ones with our backs against the wall here. Disabled people are first in line to die. The disability community has the most at stake right here, right now, so start talking about it.
This post originally appeared on my personal website, this ain’t livin’.