A friend asks:
“Do you support Medicare For All? Why not? Don’t you believe everyone has a right to health care?”
Your coworker says:
“I think everyone should have healthcare, but how do we pay for it? And even if we can pay for it, how could we ever hope to pass such a huge and controversial plan?”
Meanwhile, your aunt wants to know:
“Do you really want the government in charge of your healthcare? And Is it fair that hardworking, responsible people should have to pay the medical bills for people who don’t even work? I don’t mean you of course …”
These are stereotypes, but nowadays they kind of ring true. They’re the sentiments that every disabled person even slightly engaged in the healthcare debate hears from every corner. That, and accusations of being a shill for “the other side” if you dare to ask critical questions and raise specific concerns as a disabled person. There’s no escape from it either, especially online. Now that 2020 campaigns are underway, you can’t plant a crutch or turn a wheelchair without running into someone’s passionate beliefs about healthcare. And they want you to believe, too. They’ll even point to your disability as a reason why you should support their position on healthcare.
The fact is that people with disabilities do have unique and important priorities that aren’t always addressed in healthcare plans. For people with disabilities, they matter more than ideology, poll-tested rhetoric, or political affiliations. This is the substance of the healthcare debate for the disability community.
1. Any new plan should, at the very least, make healthcare more affordable for every disabled person.
The simplest goal is to make all healthcare free, meaning no individual charges for services or insurance, with everything financed through taxes. But a plan like this will be hard to pass, and taxes, too, need to be affordable. At least some disabled people might be willing to accept some copayments and premiums, if they were truly affordable and considerably less expensive than they are now. No cost is best, and worth pursuing. But lower cost would be an improvement worth considering.
2. Disabled people need a system where health insurance eligibility is impossible to lose.
For people with disabilities, this is as important, if not more important than affordability. Nobody should have to constantly hit an arbitrary and fluctuating medical, financial, and administrative sweet spot just to maintain their health insurance. But disabled people have to worry about this all the time. Possible loss of health insurance affects and constrains every major decision in our lives. Our real, practical freedom would improve immensely if we didn’t have to think about being “on” or “off” health insurance ever again.
3. Any new healthcare plan must provide full and generous coverage of long-term care in disabled people’s own chosen homes.
One reason this is such a pivotal issue for disabled people is that it’s easy to imagine a revolutionary healthcare plan passing, ushering in a golden age of fair and comprehensive healthcare for everyone…but with long term care left out. Most people barely know what long term care is or how it’s paid for now, and just aren’t asking for it in healthcare proposals. But disabled people are asking, and the answers we tend to get are vague at best. People with disabilities must be able to get the care they need to maintain their independence in their own homes, and we don’t want to see a new healthcare plan that simply dumps money into nursing homes. For many of us, this is a potential deal-breaker.
4. It must include full and generous coverage for medical and adaptive equipment, with a minimum of red tape and waiting.
One of the biggest complaints disabled people have about Medicaid, Medicare, and private insurance is that they are all nightmares to deal with when it comes to equipment like wheelchairs, ventilators, communication aids, and other assistive technologies. It’s not enough for a healthcare plan to say it “covers” medical equipment. Not having to pay out of pocket for a wheelchair sounds like heaven, but not if you can only get one every 10 years even though you use it every day and it takes months to get competent repairs. There is a lot of room for improvement here, but it won’t happen if we don’t insist on it.
5. Cost control measures must include real input from people with disabilities.
Almost every healthcare proposal in play relies at least partly on “cost containment,” a promise that through some combination of better management, less bureaucracy, and more rationally applied science, a fairer and more generous healthcare system will actually be cheaper. It’s true that healthcare in the U.S. is comically expensive. And it’s not hard to believe that there’s a fair amount of waste, gouging, and medical quackery involved. But what look like “ineffective” or “wasteful” treatments to some are often life-sustaining support services for people with disabilities. People with real-life knowledge of what it takes to live well and independently with disabilities must have a real voice and real influence when decisions are made about what is and isn’t worth paying for in any new healthcare system. Our lives really do depend on it.
The disability community includes people with a wide variety of beliefs about healthcare. But regardless of our ideological preferences, disabled people also have certain very specific things we need to see. And we are going to keep asking about them, even when it’s not politically convenient.
For more information: This chart from the Kaiser Family Foundation compares the major for healthcare bills currently being discussed, with details that include coverage for disability-related services.