Our 2019 Children’s Books of the Year stand out from an increasingly troubling crowd
In J.R.R. Tolkien’s The Hobbit, Gollum almost stumps Bilbo with a riddle: This thing all things devours: Birds, beasts, trees, flowers; Gnaws iron, bites steel; Grinds hard stones to meal; Slays king, ruins town, And beats high mountain down. Grasping for more seconds, Bilbo pleads for “Time,” and realizes he’s hit upon the answer.
Here’s a contemporary Washington riddle: Which federal programs have most savaged the goals of not only conservatives but liberals as well, not only adults but children, not only would-be workers but content-to-be-takers, and sometimes the truly needy?
The answer: a complex of federal disability programs led by Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). Smaller programs are also a mess—the Railroad Retirement Board last month revoked the disability benefits of 600 Long Island Rail Road retirees who were allegedly part of a massive fraud—but SSI and SSDI are the twin gorillas that cost a total of $190 billion.
Unsurprisingly, House hearings in late June revealed enormous amounts of fraud and mismanagement in the programs. Surprisingly, liberal legacies like The New York Times, the Boston Globe, and National Public Radio also castigated the programs. Journalists so far, though, have not connected the dots, showing how the failure of SSI and SSDI undercuts almost every disabled person, every government poverty-fighting activity, and every taxpayer.
That’s what I’ll attempt to do in this story—and the place to start is with the anniversary of what in 1990 seemed a progressive breakthrough, President George H.W. Bush’s signing into law the Americans with Disabilities Act (ADA). His attorney general, Richard Thornburgh, called ADA “this bright moment in modern American history ... truly another emancipation.” Senator Tom Harkin, D-Iowa, a key sponsor, labeled ADA “an emancipation proclamation for people with handicaps” that will “fundamentally change their lives” by bringing them “into full participation in society.”
Press accounts reflected that optimism. A front-page USA Today article with the headline, “Disabilities no longer a job barrier,” called ADA “The most significant civil rights legislation in more than 25 years.” U.S. News & World Report, noting that companies now had to make their workplaces disabled-friendly and make sure their hiring and firing practices were nondiscriminatory, rhapsodized about “Liberation day for the disabled.” A Harris poll showed two-thirds of unemployed disabled people excited about going to work.
The reality was different. According to analysts Richard Burkhauser and Mary Daly, 39 percent of working-age men with disabilities had earnings in 1993. That dropped to 29 percent in 2004 and 26 percent in 2009. The percentage of working-age women with disabilities who earned some money declined similarly and was down to 23 percent in 2009.
The decline isn’t because disabilities are worse and more people are unable to work: Working-age people in 1980 and 2008 had the same degree of work limitations and a similar unemployment rate.
The big difference is that official Washington through ADA said one thing—We’ll help you to work—but created incentives not to work. An SSDI-eligible person with minimum wage skills typically receives $1,100 per month from the government, plus free Medicare coverage after two years, plus other benefits. Overall he does better economically, in the short run, by staying home than by going to work.
It’s no surprise that the number of people on SSDI (about 11 million with work histories) and SSI (about 8.2 million with little or no work background) has tripled since ADA passage. Let’s see how this works out in the life of one WORLD reader, David Cox. Cox was born with oxygen deprivation because of a twisted umbilical cord. He’s had neurological problems but has still shown determination, spending 10 years to get a bachelor’s degree in business administration from the University of Colorado-Colorado Springs.
Cox says, “I don’t like government assistance. All those crazy rules and regulations.” He says he could earn $16,000 on his own as a para-teacher of incarcerated youth, but then “I’d have no security if I lost my job, no Medicare.” So he restricts his teaching, not earning more than $700 per month, and in that way retains his SSDI payments from Washington. His disability is real. He’s entitled to what he receives. His financial calculations are sensible—but he’d rather work more, in the spirit of ADA.
Multiply Cox by several million. If those on SSDI and able to work do so, they lose benefits. If they save money, they lose benefits. If they return to work and have problems, they typically have to stop working for 5-15 months before getting onto SSDI again. The result: In 2011 only 7 percent of recipients left the government disability rolls. That’s exactly the opposite of what ADA’s liberal backers wanted. That’s also two-thirds less than the 20 percent who go back to work each year after being on private disability insurance.
Despite all the good intentions at the time ADA became a law, the overriding federal message to people with disabilities is: We don’t expect you to work. More than $19 of every $20 in federal disability funds goes to support or increase dependency, not to help disabled persons find work and develop their skills.
Liberals should be distressed by the huge gap between ADA predictions and reality. Conservatives should be equally distressed by the way federal disability programs have undercut the 1995 Republican Revolution’s one big claim of success: welfare reform, which reduced by half the number of people on Aid to Families with Dependent Children (and changed AFDC’s name to Temporary Aid to Needy Families). It turns out, though, that TANF was temporary for hundreds of thousands because they moved onto the disability rolls.
Some stats: From ADA’s passage in 1990 to 1997, the first year after welfare reform, the number of SSI recipients increased by nearly 1 million, with most of them claiming disability. A General Accounting Office survey in 1997 found 12 percent of households that lost AFDC benefits began receiving SSI, and hundreds of thousands more moved to SSDI. By 2002, former AFDC/TANF recipients made up one-third of all the women on SSI. Ten years after ADA’s passage, the U.S. Commission on Civil Rights found that “When access to benefits is expanded the employment rate of individuals with disabilities drops.”
The SSDI/SSI rolls also expanded as disability definitions loosened. In earlier years officials granted disability claims on the basis of objective medical evidence concerning hearts, lungs, paralysis, and so forth. After welfare reform the most common claimed disability was bone and muscle pain, especially lower back pain—and that’s hard to prove or disprove. Disability awards for “back pain” over the past three decades have increased at least fivefold. We’ve seen a similar increase in disability awards because of mental disorders, including “feelings of guilt or worthlessness” and “difficulty concentrating.” About 60 percent of all disability awards now are for back pain or mental illness.
Some of those awards are for severe problems. I’ve gone through 77 pages of medical records and correspondence sent me by Virginian Keallie Wozny, 54. She had severe scoliosis that went untreated until it was too late to do a full correction, so surgeons fused her spine with about a 65% curve. She wanted to be a nurse, but her back did not allow her to bear the weight of patients, so she went into respiratory therapy and eventually began work at a local hospital.
Wozny learned to lean—against a wall, against the corner of a night stand, against a bed frame. She leaned whenever she could to take pressure off her back. She fought against pain, sometimes stopping at a bathroom up the hallway to cry privately. She developed osteoporosis in her mid-40s and lost three inches in height as her fused spine slowly broke down and her curve increased to 75 degrees. She had more fusion surgery but was never pain-free. She reluctantly applied for SSDI in 2007 and, after a final hearing that lasted only three minutes, gained approval.
Wozny’s need was real, but the federal Office of the Inspector General recently reported that many SSDI applicants “purposely withhold or fabricate information to collect government benefits they are not entitled to receive.” A U.S. Senate investigation concluded that “insufficient, contradictory, and incomplete evidence” underlies one-fourth of all disability insurance decisions, with “nondisabled persons” often joining the rolls. Rep. Darrell Issa, R-Calif., and two other senior members of a House committee declared in March, “Federal disability claims are often paid to individuals who are not legally entitled to receive them.”
How many? Hard to say, but the Government Accountability Office recently examined data from a dozen states and concluded that 62,000 individuals determined by the Social Security Administration (SSA) to be fully disabled had “received or had renewed commercial drivers licenses.” A 2012 paper from the RAND Center for the Study of Aging found one in four SSDI applicants in 2005 and 2006 actually employed, and more than half probably would have been two years later had they been denied SSDI benefits.
SSA has not done a full study of its SSDI and SSI recipients, but the British government did one of its officially disabled residents in programs similar to the American ones. Asked to submit medical tests to confirm disabilities, one-third of recipients dropped out of the program rather than submit to an examination. Of those tested, doctors found 55 percent fit for work, and an additional 25 percent fit for some work.
In essence, there’s good reason to believe that while Republicans boasted of TANF success in trimming the rolls, and some former recipients did go to work, SSI and SSDI for many became the new, improved welfare: Improved from the recipients’ perspective because they often received much higher stipends, without any pressure to work. Some Republicans had complained about “welfare queens,” but no one wanted to seem so unfeeling as to speak of disability queens—and kings. A national anti-welfare mood meant that from 1996 to 2003 the maximum cash benefit for AFDC/TANF families stayed the same or declined in 32 states and went up in 18, although not by as much as inflation. Meanwhile, the federal SSI rate increased by 17 percent.
Napping conservatives did not realize that not only individuals but states had strong financial reasons to make disability the new welfare. States received TANF block grants, with Washington agreeing to give states the same amount they received in 1996 even as TANF expenses fell. Meanwhile, the federal government paid directly all SSI and SSDI costs, which meant that states could make money by urging TANF recipients to move on over to the federal disability programs.
National Public Radio was shocked to learn that some states even hire firms to contact welfare recipients and push them to qualify for some kind of disability, with states then able to shift recipients from state welfare rolls onto the federal dole. Some modern bounty hunters receive $2,000 for each person they can move from TANF to disability: NPR reported that one out of four working-age adults in poor Hale County, Ala., was receiving disability payments, and called SSDI “a de facto welfare program for people without a lot of education or job skills.”
We’ve already covered in WORLD the huge increase in the number of children on SSI, and the tragic results of over-medication as some grasping parents seek mental disability status for their youthful meal tickets (see “Disabling Security,” WORLD, Dec. 17, 2011). But what are the effects on adults of disability lures? Christian poverty-fighters a century ago shared an 11th commandment: Do no harm. Do not remove work incentives. Now, analysts Burkhauser and Daly write about hundreds of thousands who “weigh the advantages of a continued struggle in the labor market relative to … application for SSI-disabled adults benefits.”
Americans, long known as people with a can-do attitude, now plot to have themselves declared: Can’t do. Last year 3 million people were new applicants for SSI or SSDI: Benefit claims have increased by 25 percent during the past five years. Scoliosis-burdened Wozny has seen how at ground level “the system is flooded with people just trying to get a free ride.” She sees lawyers shouting in TV ads, “Disabled? Get the money you deserve!” (One she contacted assumed she wanted to fake it, and told her what to do.) She sees doctors who think they’re doing unemployed patients a favor by certifying them as helpless.
Denied applicants typically request reconsideration: It might seem that twice turned-down applicants wouldn’t have much chance, but congressional investigators found the vast majority of last-chance judges approve benefits more than half the time. Some judges are umpires who almost never call third strikes: The Wall Street Journal reported that one West Virginia judge awarded benefits in 1,001 of the 1,003 cases he decided in 2011, and in 1,280 of his 1,284 decisions in 2012. And yet, a study last year by the Federal Reserve Bank of Chicago showed that if applicants denied benefits initially did not have an appeal option, their employment rate would be 35 percent higher.
SSI and SSDI do psychological harm to individuals and financial harm to the United States as a whole. If we stay on our present course, federal programs like Social Security and Medicare will run out of money within two decades—but SSDI, which ran a $25 billion deficit last year, will run out of money in 2016, according to projections by Social Security’s trustees. They predict the system that year will collect only enough money in payroll taxes to pay 80 percent of benefits, triggering an automatic 20 percent cut in benefits—unless Congress acts.
For some who can work, a 20 percent cut is survivable. For others, it would be devastating. This is not an abstract problem for Josh McFarland, a pastor with a 15-year-old daughter who has “the mental cognition of roughly a 2-year-old child, and severely autistic tendencies. She receives SSI and a lot of state help which, for the record, both my wife and I have struggled with over the years. Unfortunately, her need is great, and we simply have had no choice but to accept the programs which exist for people like her. Sometimes dealing with her needs seems to consume us, and I cannot imagine what would happen if the help she is getting now simply stopped.”
But if the number of less-needy recipients grows, at some point that help will stop or decrease—or we’ll raise taxes so high, or inflate our currency, that the economy will be devastated. In 2016, Congress probably will redirect money from the broader Social Security program, because many politicians want to be seen as compassionate helpers of the beaten-down, especially if they can do it with someone else’s money. But that just brings the whole Social Security structure closer to collapse.
We could take three steps toward a better way.
First, recognize that tinkering won’t work. Near the 20th century’s end, a lavish disability program was flooding Holland’s governmental budgets: Dutch politicians lowered benefit levels, tightened eligibility rules, and in other ways tried to reform their program at the margins. Nothing worked until the Netherlands stopped having government run everything and started using private-sector insurance firms to provide case management of rehabilitation.
Second, realize that only a “work-first strategy” works. Now, SSI and SSDI offer support only after individuals have spent a long time showing they cannot work. It would be far better to erase that firm dividing line between the able and the disabled, and to understand that almost everyone can do something. Washington should no longer encourage state officials to make SSI “the new welfare,” and should instead encourage through block grants state-by-state, work-oriented innovation.
Third, stress what individuals can do with family support. Shortly before ADA’s passage, U.S. News quoted Iowa mom Sylvia Piper saying she had saved taxpayers $4.8 million by ignoring physicians who urged her to institutionalize her son, Dan, who had Down syndrome. Instead, she sent him to public school and encouraged him to get a job when he turned 18. U.S. News reported that Dan saved $800 from his pay as a drugstore stockroom worker, purchased with his earned money a gray bedroom rug, and slept on it the night it arrived: Dan “grew when faced with a challenge.”
In 2002, at age 31, Piper died after a car hit him—and a decade later, 108 members of the “Remembering Dan Piper” group on Facebook were still writing and reading comments about him: “Dan loved life and didn’t seem intimidated by anything. … Dan gave me drive … he wanted to be treated like everyone else. … his integrity and his motivation showed me how to be a better person.” The National Down Syndrome Society conference every year gives out an award in his name.
—with research by WORLD intern Andrew Branch
Chopping up a living
CHANTILLY, Va.—On a recent morning when Brian Glen rolls a cart filled with lunch items ready for delivery, he almost bumps into a visitor. “Excuse me,” Glen says, smiling. “It’s a nice day we are having, isn’t it?”
Glen, 24, has spent the last two years working at Wildflour, a deli, bakery, and catering business 30 miles outside of Washington in Chantilly, Va. Glen is one of 35 employees with intellectual disabilities at this nonprofit that began in 1994. Five days a week these workers perform a variety of tasks for a paycheck. And they seem to love every minute of it.
“It’s kind of like being at Camelot,” says Glen. “I have my brothers and sisters here.”
Inside Wildflour’s 5,000-square-foot kitchen, a half dozen workers with cognitive disabilities stand at steel workstations dicing and slicing tomatoes, jalapeños, cheese balls, and red peppers. Jonathan Chester McCambly’s task today is cutting onions. He is meticulous about getting them the right shape before scooping them into a plastic container.
“I will let you in on a little family secret,” says McCambly, 29. “Cooking and being a chef is a family legacy. I’m trying to make a name for myself.”
Alberto Figueiredo Sangiorgio, Wildflour’s general manager, spends months teaching a new worker how to use a knife. Often he lets them cut just one pepper a day until they get it right. He tells his employees not to rush and to make every cut beautiful.
“Even if you don’t see it on the surface, they need that challenge,” says Sangiorgio, whose four decades as a chef sent him to 15 countries. “We are not here to babysit. They come here to work.”
Workers are paid $7.25 an hour and earn sick leave, vacation, and profit-sharing. The office hallway is lined with so many framed employee-of-the-month certificates that space is running out.
“Some of the guys, their knife skills are better than prep cooks I’ve had in the past,” says Paul Miller, a Wildflour chef with 30 years of cooking experience. ”In a regular work environment I think some people look for reasons not to go to work. These guys love coming here.”
In a room near the kitchen, workers use cookie cutters to press dough into bonelike shapes before placing them onto sheets for baking. Others pack cooked dog biscuits into plastic containers that are shipped to grocery stores. Jessica Dempsey, 24, is taught to pack the biscuits so tightly they make no sound when someone shakes the package.
Dempsey says work is a “really cool idea.” Her job, she says, helps her focus on her future and teaches her how to do new things. She likes impressing her supervisors by showing them how hard she works.
“This is my dream job,” Dempsey says. “Catering is part of my life.”
Many of the workers with disabilities enjoy talking about what they are saving their paycheck for. McCambly wants to go on a cruise this December with his sister. He’d also like to get his own apartment. Caitlin Corrigan, 24, who helps make chicken and tuna salad, just bought her dad golf tees for his birthday.
Sangiorgio has his employees set aside a small portion out of their paychecks every month. At the end of the year they take those savings and buy presents for patients at a local children’s hospital.
Wildflour’s model works. The business is experiencing its biggest year so far: Twenty catering orders were pending during the last week of July. Last year Sangiorgio opened up another deli at a nearby office complex and plans to expand to 50 employees with developmental disabilities by the end of the summer. He has a waiting list of parents wanting to get their children a job.
Sally Dempsey, Jessica’s mother, says her daughter has grown more independent and thoughtful. She does her own laundry, cooks pasta dishes for her family, and took her mother out for sushi on her birthday.
“In past years she would have struggled getting up and been in a foul humor,” her mother says. “But she said they are counting on her being here. She said it is her responsibility.”