America’s disability-benefits system is exploding, complicated, ripe for exploitation, almost broke, and all some people have
Published: June 1, 2011
When the weather is nice, Nathaniel Jackson Jr. can sometimes be found strolling the streets of Mount Vernon. He picks up medicine at a pharmacy for his 82-year-old aunt, or he stops by City Paper or Health Care for the Homeless. “I come here to escape the madness,” he says on a spring day, his arm sweeping the sunny corner of Cathedral and Eager streets.
Jackson, who turned 50 in February, has a purposeful gait and an honest face, both of which he volunteers in service of nonprofit organizations. He has distributed fliers all over town and advocated in Annapolis on behalf of efforts to keep TDAP—the state’s Temporary Disability Assistance Program—from being cut. He has been there on behalf of bills to allow ex-felons to vote, and to “ban the box”—the question on most employment applications that takes people with criminal histories out of consideration before they have an opportunity to interview.
“A lot of people made bad choices when they was young,” Jackson says. “They had remorse. I think they deserve a better shot at life. The deck is already stacked against them.”
This Jackson knows well. He has been out of prison for five years, he says, but despite being organized, diligent, and generally reliable, he’s gotten neither a job nor a place of his own.
After years of service on behalf of an organization called Out for Justice, Jackson can recite bill numbers and committee votes like a lobbyist. “So many—S.B. 186, O’Malley signed that—I had my hand in it,” Jackson says, reeling off the number of another bill allowing ex-cons certification in trades and another one after that. “But all of that, I don’t see [benefit for] myself. I don’t see my blessings coming. Did it help you get a house? No. I’m on a waiting list. Did it help you get a job? No. I got a ticket to work. I got disability.”
Each month Jackson gets $674 from the Social Security Administration’s Supplemental Security Income program. “I had to use my disability,” Jackson says, “in order to survive.”
Jackson is not unusual. He is, in fact, part of a crisis that is driving the debate about reforming Medicaid and Medicare, Social Security’s disability programs, and the nation’s $14 trillion national debt.
As of 2007, more than 50,000 Baltimoreans—nearly 11 percent of the city’s population aged 18 to 64—were collecting disability benefits. The numbers have certainly increased since then.
Nationally, Supplemental Security Income (SSI), the federal benefit afforded to the very poor disabled and elderly, cost taxpayers $45 billion in 2009, with more than $40 billion of that going to people, like Jackson, of prime working age. Not including the additional costs for Medicaid and Medicare, which disability recipients receive as well, the tab for Social Security Disability Insurance (SSDI), a separate federal program for people with work histories, was $124 billion. Without changes the program will run out of money by 2018.
The Center for American Progress, a nonprofit progressive think tank affiliated with the Brookings Institution, noted in a December 2010 paper that the percentage of all workers collecting SSDI had nearly doubled in the 2000s while the percentage of those working has declined. “Unless and until the program’s incentives are realigned to discourage dependency and support work,” the authors, University of Maryland economics professor Mark Duggan and MIT economist David Autor, wrote, “SSDI is likely to continue expanding in size while reducing the employment of workers with disabilities.”
The report was just the latest in a series of studies Duggan and Autor have done analyzing the rise of disability payments in the United States, prompting a spate of newspaper and magazine pieces on the subject. At the center of these stories are two ideas: First, that the benefit, which economists say sums to more than $300,000 over the lifetime of a typical worker collecting SSDI, is too rich—some commentators have likened it to winning the lottery. The second, related idea is that, given that most of the new cases are younger people making claims for hard-to-quantify ailments such as mental illness and back pain, many beneficiaries are not really disabled, but are able to claim cash benefits because of a lax system that is now dominated by lawyers working for claimants on a contingency fee.
“The [disability] screening procedure put in place by Congress hinges to a significant extent on an applicant’s employability, not just personal health,” Duggan and Autor wrote in a 2006 article, “causing the program to function much like a long-term unemployment insurance program for the unemployable.”
The idea that relatively young, apparently able-bodied people like Jackson, who has never held a straight job in his life, are somehow putting one over on the American people has seeped into the national consciousness and seems likely to be the focal point of the coming debate about reforming the programs. Yet few if any of the recent news reports or economist’s studies have delved into the details of SSI or SSDI as they work in individual cases. Jackson’s journey into the ranks of the disabled helps illuminate the disability insurance system’s role in the life of its beneficiaries, and in the larger economy.
Born on the east side, Jackson says he grew up in foster care and “didn’t have time to go to school.” He ended up on the streets. “I would break into your car,” he says. “That was my job, every day.” He stole at first for food, he says, then later for money to buy weed. “Then I started dibbing and dabbing [in cocaine and heroin] ’cause I was curious,” Jackson says. “Then I became chemically dependent.”
There were guilty pleas for theft in 1988 and 1990. He pleaded guilty to burglary twice in 1991, receiving in one case a 10-year sentence (“I took a $720 Nikon camera, busted it out a window on St. Paul Street,” he says), and in the other a seven-year suspended sentence.
“He gave me a break,” Jackson says of the judge in his cases. “I’m-a keep it real. He gave me a break, he sent me to a drug treatment program.”
Jackson says he was put out of one program after an argument. In 1995 he was sentenced twice—to 10 years and seven years—for violations of probation. It was May 2006 before he was released from prison.
While incarcerated, Jackson cleaned himself up, swore off drugs, and joined a series of programs designed to help him “re-enter” a society of which he had never really been a part.
Jackson graduated from Health Care for the Homeless, phases one, two, and three. Like most of Health Care for the Homeless’ clients, Jackson needed help applying for the state’s Temporary Disability Assistance Program, which doles out $185 per month.
For more than two years Jackson lived on that. He moved into his aunt’s home waiting to be approved for his federal SSI payments and for a subsidized apartment. He says he got on waiting lists in both Baltimore City and Baltimore County.
“I have a disability, and I try to use my disability,” Jackson says, mentioning lung problems, a heart condition, and diabetes. “But they take people in wheelchairs, people with prosthetic arms. They say they have units set up for them.”
Prior to 1984, a disability claimant had to have a single overarching problem that disabled him or her. Then changes to the rules—subtle and little noticed outside the specialized legal circles—compelled government bureaucrats to tote up many cumulative ailments that, taken together, might add up to a full disability.
People with disabilities that might make them eligible for disability benefits don’t always put them forward as forcefully as they could, even when applying for such benefits. “The people with disabilities I know try to make light of their disabilities,” says Virginia Knowlton, executive director of the nonprofit Maryland Disability Law Center. “Most people don’t want to emphasize it.”
That tendency, plus changes in the disability screening process, has inspired a growing army of lawyers who specialize in helping people navigate the system. This, economists suggest, has stoked the system with marginal disability cases, slowing down the process for some of the most severely disabled applicants while creating a bonanza for skilled lawyers who know how to work the system.
From May 11-14, the National Organization of Social Security Claimants’ Representatives held a convention in Baltimore. Describing itself as “an association of over 4,000 attorneys and other advocates who represent Social Security and Supplemental Security Income claimants,” NOSSCR (it rhymes with “Oscar”) is one of several such organizations
NOSSCR’s Ethel Zelenske says that in order to understand why a disabled person might need help from a lawyer or other experienced advocate to prove he or she is disabled and thus eligible to collect $674 (a typical SSI award) or $1,100 (from SSDI) a month, one needs to know that applications go through the office of Disability Determination Services, a state agency that acts as a gatekeeper. “The state agencies don’t always do the best job of developing the evidence,” Zelenske says. “They don’t always ask questions with the buzzwords that are used by Social Security Administration.”
For a fee capped at $6,000 per successful case, paid out of resulting benefits, a claimant’s lawyer or advocate gathers his or her medical records, delves into the claimant’s history with an eye toward the criteria used by Social Security, and wrangles the reams of paperwork.
“There are lots of issues that are beyond the understanding or ability of my average client,” says Paul Nolan, a Baltimore disability lawyer in private practice. “Most of them have never heard the term ‘residual functional capacity.’ . . . Most of them could read the list of [possible] impairments but would not understand anything written in it . . . and a lot of people get bad advice from friends, family, Social Security employees who say this is simple, you can do this yourself. The process starts with a 20-page function report. It has to be filled out—they start to freak out.”
People like Nolan have been in high demand as the disabilities for which people seek compensation have become less obvious. The initial award rate for applicants—the percentage of people who apply who get the benefits within a few months—has plummeted for people in the 18-64 age group. In 1992 more than 45 percent of applicants were approved by the initial state reviewer; by 2008 less than 30 percent were approved this way. Many of the rest are appealed, through a process that can easily take two years, landing before an administrative-law judge, where about 60 percent of previously rejected cases are deemed valid after all.
“And at the administrative-law judge stage there can be very complicated issues,” Zelenske says. “Better if someone has a certain amount of expertise to address” them.
Complexity breeds business opportunities. NOSSCR convention exhibitors included the SSD Group (“We deliver the most calls of any television advertising plan, and more SSD calls to your office means more SSD cases for you”), the Marketing Center (“Marketing that Helps You Reel Them In”), and PILMMA (“Explode Your Caseload; Increase Your Bottom Line”).
Specially trained nonlawyers are now offered starting salaries in the $40,000 range to perform this service if they have, in the words of one ad on the NOSSCR web site, “willingness to work in a small, fun, and entrepreneurial environment . . . with significant upside potential.”
Last year the Social Security Administration (SSA) paid more than $1.3 billion to lawyers and other advocates for their work in getting people SSDI—more than double what it paid in 2003—according to the SSD Group, which asks its potential clients, “Shouldn’t your Social Security caseload be increasing as well?”
Jackson’s SSI approval came in fall 2009. The gross payment for back benefits since the date he first applied was nearly $16,000, but he received less than half of it; his lawyer took nearly $4,000 and Jackson repaid the state about $4,800 in TDAP, the $185-per-month state benefit. “People don’t realize, that’s a loan,” he says during a spring 2010 interview. “They snatch it back.”
Jackson still had more than $7,000 coming in two $3,000-plus installments. That was a problem, he explained, because SSI rules don’t allow recipients to have more than $2,000.
“The fear that I have is this: I just got my lump sum,” Jackson said during that first interview a year ago. “I just got $3,074 and $674 the first of this month. But I can’t keep the money in the bank beyond a certain amount of time. If I don’t spend it, I could lose it. It can only stay like that a year because of what I got coming in.”
Jackson had budgeted $550 for a bedroom set, another $150 for kitchen stuff, and another $600 for living-room furniture to furnish the apartment he was hoping to get. But he did not get an apartment, and he had no place to keep new furniture in his aunt’s place.
“If they had given me the whole $7,000, I would be stuck,” Jackson says. “I would be primed to be a victim. Before I let them take it back I would blow it.”
A year later, the money is gone. “I spent it on clothes, shoes, TVs,” Jackson says. “That’s how I blew it. Places to eat I wouldn’t have. I went to strip bars. And little things that were happening. Money got stolen off my [Wachovia Bank] card. Here $185 was missing, then $200. The money was getting nibbled on. So I just spent it.”
Winning disability benefits can complicate the recipients’ lives in other unanticipated ways. Adam Schneider, Health Care for the Homeless’ community relations coordinator, describes a current client who is eligible for SSDI. His health insurance is Medicaid, the federal program for the destitute. “Once he gets that [SSDI] payment he is no longer qualified for Medicaid,” Schneider explains. “But Medicare,” he notes, referring to the other federal health insurance program, mostly for the elderly, but also for the disabled, “won’t start for two years.”
Under current SSDI rules, disabled people can be left without comprehensive health insurance, and about $1,100 per month on which to live.
“They will be eligible for PAC,” Schneider says, referring to the state’s Primary Adult Care program known as Medicaid Lite. “That covers diagnosis,” Schneider says, “but they’ve already been diagnosed. What they need is treatment.”
Both disability programs—SSI and SSDI—also allow recipients to return to work (or, in SSI’s case, enter the work force). But according to the Social Security Administration, the percentage of blind or disabled SSI beneficiaries who work peaked in 2000, at 6.7 percent. By 2009, the figure was just above 5 percent. More than 183,000 people in Maryland currently have a “ticket to work”; fewer than 1,200 of them are employed.
“People are scared to try to work, because they don’t know what will happen,” NOSSCR’s Zelenske says. Many ailments, such as multiple sclerosis and mental illnesses, wax and wane, she notes, so a patient may be capable of working for a month or two then laid up for the next two. “A lot of people go in and out of the need for disability,” Zelenske says. “That is one thing we have been pushing—people need to go in and out of the program as needed.”
The program actually allows that, in theory, but a person collecting disability and earning more than the maximum allowable amount (about $1,000 per month) during a nine-month working trial period could reach what Zelenske calls a “cash cliff,” and face a sizable bill for back payments once the government catches up. “Then they come up with [benefit] overpayment notices—tens of thousands of dollars,” Zelenske says. “It’s scary, so word gets out within the disability community” that getting a job is not worth the risk.
“People want to be working,” Schneider says during a meeting in the ample conference room of Health Care for the Homeless’ gleaming new building on the Fallsway. “Even people with pretty severe disabilities would like to be working, but they can’t always string together periods of work.” They are often the first laid off when companies economize, he says, and many of them end up homeless, or nearly so, like Jackson.
Getting back into stable housing “takes a really long time,” Schneider says. “In Baltimore, I think the waiting list [for a Section 8 housing voucher] is seven years.”
The delays and complications involved in getting disability benefits have also made his clients’ lives even more difficult, Schneider says.
“People who are the most vulnerable, the most disabled, tend to be the folks who are least well served by the current system, because there are a number of barriers by the way the process was designed,” Schneider says.
The system routinely requires people without transportation to travel miles to a hearing, he notes. Or it requires people who have no health insurance or doctor to present comprehensive medical histories geared to the buzzwords favored by the SSA. “The issue is those who are most vulnerable—if you were to spend five minutes with them you could say clearly that this person lacks the abilities to engage in daily living, or hold a job,” Schneider says. “But most of the time that five minutes doesn’t happen before they get to the [administrative-law judge], which is two years later.”
Jackson was able to get on SSI after a two-year process—not unusual in these days of clogged dockets. Along with Health Care for the Homeless, he says he got help from attorney Robert S. Piazza Jr., a “Board Certified Social Security disability advocate” at the Disability Law Center of Robert S. Piazza Jr., whose office did not return a reporter’s phone call. “I’d never told people about my disability,” Jackson says.
Local disability lawyer Paul Nolan says advocates like himself are crucial in part because clients are unwilling or unable to come to terms with the nature of their disability. “People who are mentally ill a lot of times don’t know they are,” Nolan says. “People with incontinence often don’t mention that. I had one guy soiled himself during the interview. The stench made me sick. . . . I’m not being flip—I had the problem myself once as a side effect of medication I was on. The judge says he can wear Depends. But that doesn’t cover the stench.”
As a lawyer, Nolan’s duty is to bring up every ailment. “I get clients—I hate the word—that are mentally retarded,” he says. “They have a 65 IQ or something. They could work, they’re high functioning. Then they get sick. Their little structured world falls apart . . . they think they’re disabled because they’re sick . . . but you have to get them to the idea—they have mental capacity that is diminished.”
Nolan describes a client, a 26-year-old woman who lives with her mother. “You dig into it—she’s not on her own. She has a 61 IQ. I tell people with kids in special ed, keep the records forever, because a lot of special education records get destroyed after five years.”
Having dropped out of fourth grade, Nathaniel Jackson did not have much in the way of school records. He had lost track of his six siblings; his mother and foster parents were all dead. Jackson says he was hospitalized for Hepatitis C and pneumonia back in 1987. He had his lungs drained with a shunt. Respiratory troubles make part of his disability today, he says.
“My disability was based on not working,” Jackson says. “My disability was based on hypertension. My disability was based on diabetes, hypertension, Hepatitis C, and some mental issues.”
Asking Jackson about his disability brings out a string of forthright answers that, eventually, includes the fact that his IQ was tested after his release from prison. He scored below 65, a fact which renders him officially disabled all by itself. Given his demeanor and volubility, it is surprising information indeed, although when presented with a restaurant menu he makes it a point to order whatever his companion is having. Jackson says he learns mostly from speaking and memorization.
“I can take everything you just gave me, and through rote learning, recite it to someone else,” Jackson says. He says he’d love a job in food service, cleaning up after banquets. But Jackson’s favorite job is speaking to groups of people like himself, earlier in their journey from addiction. “I hold myself out as an example of what you can do,” he says. “And I did it. I have everything except my own place.
“I want to be able to say, ‘I got a house. Wall-to wall-carpet. Central air!’” he says, smiling. “‘I’m payin’ my bills.’ But I’m on the waiting list. Suppose you were a woman. She’d say, ‘Tell me all about yourself.’ And what would I have to say? ‘I have a room.’”
That room is in a small rowhouse on Carswell Street. On a block mixed with boarded and demolished buildings, the house looks about average, its aluminum siding peeling. Inside, the front room stretches back, empty of furniture, the sheetrock ceiling installed a few months ago. Beyond that, in the dining room, Jackson’s Aunt Asalee, the home’s owner, lies on a hospital-style bed with steel rails watching Dr. Phil on a tiny TV.
Jackson tells her he did not bring her prescription—diabetes testers—because the price at the Mount Vernon pharmacy was $42, and he knows a place, several miles north of here, where the price is more like $38 and change. Jackson has Asalee’s money in his pocket, and later he will take several buses and a walk (“The place stays open till 9, right?”) to save $3.
Jackson leads a visitor up the creaky stairs to the second floor, where the ceiling plaster and lath are all gone in the hallway leading to the large back room, its door secured with a padlock. The room is bare with piles of construction debris visible in the back.
The bathroom on this floor was renovated about three years ago, with a new sink, a walk-in shower, and about a foot of fiberglass insulation above the ceiling, visible through the bare ceiling joists in the hallway. Jackson explains that his aunt’s grandson, Joe Hopson, took the plaster down with some other family members as a favor to the contractors who came to remake the bathroom and do some other work. Hopson thought other renovations would be covered under a city loan and wanted to make things easier. The city loan didn’t cover much beyond roof repairs, some electrical work, and the bathroom. So now the house is ripped apart, and there’s no money to fix it.
Asalee gets $715 a month in disability and Social Security payments. Jackson pays $150 from his disability payment to his aunt, whose affairs are handled by Hopson, who has two children of his own to help support on a job delivering groceries for Safeway. Hopson says two other relatives visit daily to help Asalee. “We do the best we can,” he adds. “She could be easily in a nice nursing home, but she’s in sane mind so they can’t make her go.”
Jackson’s room, also behind a hasp lock, is undemolished. He has a clean bed and a carpet, a 55-inch TV that he bought at a pawn shop, and a closet full of clothes. He keeps two three-ring binders with his records—his Narcotics Anonymous awards, Nation of Islam citations, and birth certificate, among other important documents. He shows a visitor his binder—proof of his fealty to his many programs. Proof that he has done everything that was asked of him. Proof that Nathaniel Jackson tells the truth.
On May 17 a photographer visits to take Jackson’s portrait while Asalee waits downstairs, her bed now in the barren living room. She declines to be interviewed and turns her attention to the TV. Jackson, whom Asalee calls “young man,” puts some pills on her bedside table as he heads out the door.
“I’m hungry,” Asalee rasps. “When you coming back?”
Jackson says he’ll be back later. He heads downtown with no particular agenda.
> Email Edward Ericson Jr.