But as the years went by, he never got promoted, and started getting fewer and fewer hours there. At a certain point, he wasn’t working enough to be eligible for health insurance. And he had to have health insurance — Khouri was born with a rare condition that left him hard of hearing and with low vision, slightly slurred speech, and hefty bills for the drugs that keep his endocrine system running smoothly. (REI declined to comment on personnel matters.)
So instead of going out and trying to support himself with another job, Khouri took the safer option: Applying for Social Security disability insurance and Medicaid. It was a long process, requiring visits to doctor after doctor. Finally getting approved brought some relief — until he realized that returning to work would bring new complications. If he earned more than about $1,000 every month, he would quickly lose the medical assistance he desperately needed.
“It’s really scary when you’re worried about how much money you can make, because you don’t want to make too much,” Khouri says. “But at the same time, the benefits aren’t enough.” The average federal disability check is about $1,200 a month, which puts people right around the poverty line; Khouri is staying in his parents’ house to save on rent.
The prospect of falling over the “cash cliff,” as the sudden dropoff in disability insurance is known, is part of what’s keeping people with disabilities out of the workforce, despite many programs put in place over the years to reduce that disincentive.
So many people are now on the assistance rolls that the federal government’s disability insurance trust fund is projected to run out of money next year, bringing new urgency to the search for a fix that goes beyond just throwing more dollars at the problem. If a remedy is not found by the end of 2017, benefits for an already vulnerable population would face a mandatory 20 percent cut.
Some experts and advocates hope to arrive at a plan that would avoid insolvency in part by doing a better job of returning people to the workforce. But right now, only 31,591 people left the rolls because of employment in 2013, which amounts to less than one half than one percent of beneficiaries.
And the problem has been getting worse. According to a recent report from the American Institutes for Research, the proportion of working-aged disabled adults in the labor force — that is, working or looking for work — fell from 25 percent in 2001 to 16 percent in 2014, continuing a long slide from the early 1990s. The rate dropped for the general population only dropped from about 67 percent to 63 percent.
The disincentives built into disability benefits can be particularly acute in a high-cost area like Washington, as Khouri has discovered. After he was approved for disability insurance, he got a full-time internship at Disability Rights International in Washington, and was excited about getting his foot in the door in a field he was passionate about. But the position paid $15 an hour — threatening to put him over the earnings limit for his disability benefit.
"I had to basically cut down my hours and say ‘I’ll volunteer the rest of my time, but I can only get paid for 15 hours a week,’” Khouri says. Fortunately, the organization specialized in disabilities, so instantly understood the problem. “'Had I done that with another job, they would’ve been like ‘why?' and it’s really tough to have to explain that when you’re a new person.”
Researchers and advocates for the disabled say the cash cliff is baked into the very definition of “disability” for the purpose of earning benefits: In order to receive a subsidy, you need to prove an inability to participate in what is technically known as “substantial gainful employment.”
Trouble is, many find it hard to make the leap to regular work if the risk is losing coverage.
“We’re seeing that people simply aren’t going back to work,” says Alex Ghenis, a research specialist at the World Institute on Disability. “And we believe that the cash cliff has shown itself to be such a work disincentive that people say ‘I can’t afford to even try, because it’s so difficult.’”
Ghenis and other advocates for the disabled think that the disability insurance system ought to be overhauled. But there’s been little progress so far in Congress — leaving the approximately 14 million people receiving disability insurance benefits to wonder whether anything will ever change.
Why fix-it attempts haven't worked
The current dilemma is partly an unintended consequence of another effort to actually wean people off government aid.
The number of people receiving assistance expanded significantly during the 1990s, when the Clinton administration started attaching work requirements to the Temporary Aid for Needy Families program. States ended up pushing people who lost those benefits onto the disability rolls, which had the effect of switching people from a program in which they never had to demonstrate an inability to work to one in which they did. Meanwhile, states where workers compensation had been cut drastically also have been more likely to see a rise in disability enrollment.
That shift had consequences. Some research suggests that the increase in disability enrollment through the 1990s played a role in pulling low-skilled workers out of the labor force. The rolls continued to lengthen in the 2000s, as the workforce aged, and the value of medical benefits provided increased.
The recession brought another wave of disability applicants, as work became harder to find for everyone. "They might be qualified for the disability benefits prior to the recession, and if they’re able to afford their life, they don’t have the necessity to be on benefits,” explains Michelle Yin, of the American Institutes for Research. “And once the recession hits, it’s just simple math. They couldn’t afford it anymore.”
To address the disincentives, regulators and legislators have tried a host of programs. For example, there’s long been a nine-month trial period over which recipients can earn unlimited money before their benefits cease, to test their ability to be self-sufficient. There’s also something called the “Ticket to Work” program, which brings in specialized support services to help people prepare themselves for and hold down a job.
But participation in those programs is low, which disability rights groups attribute to their complexity and red tape. Sluggish record keeping has also resulted in tens of thousands of overpayments, which then have to be recovered, undermining participants’ willingness to believe that going back to work won’t hurt them in the end.
“The Ticket to Work program has been over bureaucratized to the point where people don’t use it,” says Kelly Buckland, director of the National Council on Independent Living. “We don’t think it has done anything to help employment of people with disabilities.” That’s borne out by the Social Security Administration’s own commissioned evaluations.
All of that might not matter so much, however, if it were evident that decent pay awaited on the other side of this thicket of rules and programs. The more fundamental problem: People with disabilities tend to make far less than those without. On average, correcting for certain demographic and labor market characteristics, people with disabilities earn 37 percent less than their fully abled peers.
That happens for a bunch of reasons — all of which Paul Khouri understands.
When he finished college at Gallaudet University, Khouri wanted to go into the Peace Corps. He had spent much of his childhood in Jordan, where his father was a lawyer, and felt very comfortable living overseas. He applied, was accepted, and placed in Kazakhstan.
But when Khouri's application reached the medical inspector for signoff, he was told he couldn’t go because of his disability. He appealed, and after two years, was denied again. "It’s things like that that make me really annoyed,” Khouri says, the frustration still evident, even years later.
He said lots of people are accepted who end up being uncomfortable with third world conditions, which he felt well equipped for. “You interview this person, they say they can’t handle this situation. I’m right here. I can do it.” (The Peace Corps confirmed that Khouri had applied and ultimately was not deployed, but declined to comment further on personnel issues.)
Lots of other people are likely denied employment because of their disability without even a medical justification. Researchers from Rutgers recently found that job applications disclosing disabilities that wouldn’t be a hindrance in the position — spinal cord injuries for an accounting job, for example — received 26 percent fewer expressions of interest than those that mentioned no disability.
Advocates for the disabled argue that reflects a larger perception problem, in which society sets low expectations for what disabled people can achieve. Problems can start early if special education classes don’t prepare kids for work, they say, and can be aggravated by forms of “sheltered employment” that are legally allowed to pay people with severe disabilities less than minimum wage for their labor — often with the support of employers like Goodwill International, and families of the disabled people.
“People are afraid that people with disabilities without these special systems are going to be isolated and left at home,” says Tina Campanella, president of Quality Trust, a D.C.-based non-profit that like many groups has pushed for an end to the longstanding sub-minimum wage provision in federal law. “The fear of the unknown really balances out peoples’ commitment to get people out there."
Then there are the small things that make working a challenge, constraining disabled peoples’ earnings potential. After leaving REI, Khouri worked and interned for several disability rights organizations. Some of those employers, as conscious as they were of the need for special accommodations for various conditions, maintained office environments that were hard to navigate.
“Their office space didn’t work with me at all,” Khouri recalls. “The desks all faced the wall, so when someone’s talking to me for 10 minutes behind my back, I have no idea what they’re saying.” He finally asked one boss to e-mail him instructions, since he was having trouble understanding them through a thick accent.
Khouri can walk. Workplaces can be particularly unfriendly for wheelchair-bound people working at small companies that aren’t subject to the Americans with Disabilities Act. “It’s frustrating to start a new job and have to say 'you need to change all the furniture, I can’t get through,’” he says.
Is there a way forward?
Researchers, regulators, and advocates have kicked around a lot of ideas to improve the situation, many of which have been the subject of several congressional hearings over the past year as legislators seek to head off exhaustion of the social security disability insurance trust fund.
Ultimately, lawmakers may avert insolvency by simply doing what President Obama has asked: Reallocate some of the payroll tax into disability insurance, rather than the better-funded part of social security that supports people when they retire. But advocates are also hoping that they might accomplish some reforms along the way.
The most likely fix is meant to directly address the “cash cliff” problem. The Social Security Administration has been testing a mechanism that would make the cliff into more of a slope, decreasing disability insurance benefits by one dollar for every two dollars that a person earns, with some positive early results. Although it wouldn’t necessarily save a lot of money in the short term, the idea has gotten some bipartisan backing.
Still, that change likely won’t be enough to erase the disincentives. More fundamentally, disabled people need to be supported in returning to work as quickly as possible — the longer you spend away from work, the harder it is to return.
“What we don’t have is a real strong, consistent system that can focus on people while they’re at work,” says John O’Neill, director of employment research at the Kessler Foundation. “By the time someone loses their job and applies for [Social Security benefits], it’s been several years that they’ve been out of the workforce.”
There’s already a structure in place to help out with that: The state vocational rehabilitation agencies, which receive some $3 billion a year from the federal government to help people return to work. If you need transportation, technological aides, or something else you can’t afford in order to take a job, they might be able to help.
Thus far, however, advocates say the vocational rehab system hasn’t been up to the task. Agencies are evaluated based on the percentage of people they serve who find jobs, which incentivizes them to help only the easiest cases, says Cheryl Bates-Harris, a senior disability advocacy specialist at the National Disability Rights Network.
“The Social Security Administration does not believe and has never believed that vocational rehab really serves their clients well,” Bates-Harris says, noting that many state agencies have a very limited range of services and aren’t able to handle all the eligible applicants. Recent workforce legislation made some tweaks to the program, but did not substantially increase funding.
There are other ways to build support systems for disabled people at work. The Netherlands, for example, shifted much of the responsibility for paying disability benefits to employers, and required them to invest more in accommodations to help people keep working through their recovery. That helped improve employment rates, and slowed the rise of the numbers of people on the rolls.
At the moment, there’s general agreement among lawmakers on the goal of getting more disabled people back to work. That’s one of the rare pieces of common ground in Washington.
“That should be the spirit of [disability insurance]. It will be there for you if you can’t work,” said Ways and Means Committee Chairman Paul Ryan, at a hearing in July. "But if you want to work, we won’t get in the way. We should recognize everybody has something to offer. Everybody can contribute.”
But even the most commonsense legislation can have a hard time making it through Congress in an election year, so lawmakers might just plug the hole in the trust fund without fixing the underlying problem. That wouldn’t be a surprising outcome for those who’ve followed this issue for a long time, or even the worst-case scenario — just a letdown, says Buckland, of the National Council for Independent Living.
“The problem is, you’re talking about 14 million citizens with significant disabilities,” he says. “You’re doing them an enormous disservice by not passing a thoughtful reform.”