I read Terrence McCoy’s latest story in The Washington Post this weekend with a mounting sense of anger. Not at the events he reported in his beautifully written narrative feature — but at what he left out.
The story profiles a Missouri family in which four generations have been “on disability.” “Will it continue?” asks the headline used to promote the story on Facebook. The question isn’t whether the family will be cured of their medical conditions; the question is whether they can — or should — seek to survive without disability aid from the government.
There’s a reason that’s an unfair question to ask both of this family in particular and of Americans with disabilities generally. But the story as it ran in The Post is so lacking in basic reporting and exposition that readers would never know it. When I reached out to The Post for a response, a spokeswoman said that the story was “not about” the contextual factors that are left out. But without them, in my opinion, the story is incomplete and even misleading.
Throughout the piece, McCoy refers to the family members as being "on disability." This is not a term you'll find in many government documents, however; it's a colloquialism. Not once does McCoy define what he means by "on disability," name the programs involved, explain how they function or describe the strict income and asset limits placed on those who receive them.
The U.S. has two major programs to assist people with disabilities: Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). Neither of these terms are mentioned in the article — an article entirely concerned with disability aid.
SSDI is a form of social security payment that goes to former workers who paid into the Social Security Administration before becoming disabled.
SSI is for people who didn't work enough to qualify for SSDI: for example, those who became disabled at birth or in childhood. Unlike SSDI, it is "means-tested" — another term that never appears in the article. "Means-tested" means that to receive the benefit, you must not only be certified to be disabled (by a state agency or a judge, not a doctor); you must also meet strict asset and income limits. And if your income goes up, your benefits go down.
These limits vary from state to state, but generally speaking, they work out to no more than $2,000 in assets and around $735 in income per month. Your home and one vehicle are exempt; everything else is not, including savings accounts and trust funds, or even SSDI income. (As of last spring, there are ABLE accounts to allow people with disabilities to save money without losing their benefits, and Missouri has its own similar program, but because of the income cap, most people on SSI find it hard to save money even so.) If you are a minor living with your parents, or an adult living with a partner, their income and assets are also deemed against the cap.
In most states, though not in Missouri, SSI approval automatically comes with approval for Medicaid, the government's healthcare program of last resort. Medicaid imposes financial restrictions similar to SSI — in Missouri, the asset restriction can be as low as $1,000 — but it covers services, devices and support that many people with disabilities need to survive.
A lot of these services are not covered by private insurance plans, and would be extremely difficult to pay for them out-of-pocket. For most, there's a large gap between being too wealthy to qualify for Medicaid and being rich enough to pay for these services, or even for ordinary health insurance premiums ("health insurance” is another term not used in McCoy’s article).
These are some of the ways disability aid policy functions as a de-facto segregation program for people with disabilities, barring them from work even if they can work. Illness is expensive; disability is expensive. Public assistance is, for many, the only way to survive, yet it forces them to stay, as Andrea Louise Campbell writes, "poor, forever." This would seem to be important context when McCoy writes that many poor people are “on disability.” Many disabled people have no choice but to be “on disability,” and being “on disability” requires them to be poor.
I don't know how the family McCoy profiled for The Post fits into these interlocking programs, because none of this is explained in the article. Again, this is an article on the subject of disability aid that does not name any of the programs supplying that aid or explain how they work.
This would appear to be a giant hole in the reporting, enough that the article becomes misleading. I reached out to McCoy for a response, and he referred me to Kris Coratti, The Post’s vice president of communications and events.
In an emailed statement, Coratti wrote that a previous story in the same series “provide[d] more context,” though I found no explanation of SSI or SSDI in that piece, either. She also referred me to a video that ran alongside the second story, the narration of which briefly names SSI and SSDI, and notes that the programs are difficult to successfully apply for and “barely enough to live on,” information that is missing from the article.
“This series is not about health insurance. It is not about Medicaid, beyond the fact that recipients of SSI do receive Medicaid. It is about people on disability — namely, people who receive SSI and SSDI — living in rural America," Coratti wrote.
In writing this critique, I don't mean to pillory McCoy or his editor. This is a systemic blind spot for our industry. As a journalist, I’m frustrated not only because of how damaging this kind of elision is to people with disabilities, but because these omissions are endemic to disability coverage writ large.
I've found the same kind of holes in story after story about disability and services for disability. A writer reports on a movement to change a law that allows companies to pay disabled workers below minimum wage; there's no mention of whether a higher salary will mean that the workers will lose Medicaid benefits.
Ditto a program to encourage employers to hire people with disabilities. People with disabilities turn to hospice care even though they're not dying; there's no discussion of why they aren't getting the services they need in the first place. A teenager with disabilities “chooses to die”; most journalists cover it without reporting on her family’s financial situation, or that people with her condition typically have normal lifespans and little pain, either because the reporter didn't see fit to include it in the story or — more likely — they didn't think to ask.
When it comes to disability, most reporters don't know what they don't know. That’s because journalists share most of society’s conflicting prejudices: that disability is something pitiable, that it’s natural for people with disabilities to be unable to work; yet, at the same time, that it’s easy to coast “on disability,” that these benefits don’t come with strings. We are used to coming to subjects from a position of relative ignorance, but we pride ourselves on asking questions; but when the subject is disability, too often we leave basic questions unasked or unanswered.
We do our readers a disservice. We do people with disabilities a disservice. We need to do better.