Disabled Need Not Apply
Harry and Dixie Smedley will never forget that August night in 1987 when the police arrived at their front door. Dixie still closes her eyes at the memory.In Harry's words, "That knock on the door changed our lives forever." Seventeen-year-old Matthew, their youngest of three sons, was out with friends when their car ran out of gas. As the boys walked for help along the shoulder of Dirksen Parkway, in Springfield, Illinois, a motorist struck Matt, sending him into a four-month coma and more than two years of hospitalizations. Nine years later Matt moves about haltingly with the help of special canes to brace his arms, and he uses a wheelchair for longer distances. He speaks a bit more slowly than the average person, and he has trouble with some higher thinking skills. But he can drive a car, fix his own meals, answer the phone, and perform a variety of clerical tasks, ranging from filing and typing to data entry.More than anything, Matt wants to work. "I could do a lot of things, but people won't give me a chance," says the rail-thin, polite ("Do you mind if I smoke?") young man with pale blond hair and a wistful smile. Matt hasn't worked since April, although he has responded to dozens of help-wanted ads in the past few months.Matt's parents, who both work in state government, help out financially, and he gets about $420 in a monthly disability check from the Social Security Administration's program known as SSI (Supplemental Security Income). But he hates being on welfare and doesn't want to depend on his family to make ends meet.The Social Security Act requires the federal government to refer people like Matt to state programs aimed at helping them join the work force. Under Congress' Rehabilitation Act amendments of 1992, each state gets money for job training and placement, and the state has a legal mandate to help people like Matt find gainful employment. Social Security also has what it calls "work incentive" programs designed to help disabled people keep some of their benefits while working.Matt and his parents say neither Social Security nor the Illinois Department of Rehabilitation Services (DORS), the state agency funded to provide employment services, have done anything to help Matt find stable, long-term employment. "They would have closed his case a long time ago if it were not for Dixie and me," says Harry, referring to the DORS office in Springfield. "We've gotten the message: they would just as soon not bother with him." "I can't even go there any more, I get so angry," says Dixie."My philosophy is, I'll take care of it myself.""If something is wrong with a case, we're the first to admit it," says Melissa Skilbeck, DORS' public affairs spokesperson. But in reviewing Matt's file, she faulted him for "not following up as well as he should have" on job leads. "When we say we help people with disabilities find jobs, they think we pick up the phone and make three calls, and they start work the next day," she says. "In actuality, we help prepare them for the work force. We can offer a wide variety of training, evaluation, education, and different therapeutic services, but folks who come to this agency need to go out and get their jobs like everyone else."DORS, headquartered at 623 East Adams, in Springfield, employs 2,100 state workers and has a $365 million budget for fiscal year 1997, according to Skilbeck. It gets 78 percent of its vocational rehabilitation budget, which totals $95.3 million, from the federal government. In addition, she says Social Security pays the state agency an average of $9,300 per person for the people it sends to DORS who end up off the federal rolls and successfully employed for nine months.PRESSURE TO WORKMatt Smedley is one of about 49 million Americans with disabilities. They make up nearly 20 percent of this country's population and cost the nation's economy an estimated $200 billion in lost work productivity. At a time when the government has pledged to end welfare as we know it, they are under even greater pressure to join the work force. Nearly 80 percent of people with disabilities want to work, according to a 1994 Louis Harris survey conducted for the National Organization on Disability. Yet the disabled have a 70 percent unemployment rate. Illinois alone has more than 300,000 working-age adults on federal disability rolls, according to the SSI Coalition, a Chicago-based national advocacy group for low-income elderly and people with disabilities.Despite passage of the 1990 Americans with Disabilities Act, designed to protect qualified employees from discrimination, the 1994 Harris survey also found a substantial increase in the percentage of non-working disabled people who wished they had jobs.July figures from the U.S. Census Bureau indicate employment trends for people with disabilities began to improve in 1994, but advocates for the disabled say the system designed to help them isn't working nearly as well as it should. "As an advocate program, we regularly want to pull our hair out over this [employment issue] because it's not happening like it needs to," says Cindy Grothaus, director of the Client Assistance Program in Illinois, a federally funded state program at 100 North First that investigates complaints from dissatisfied DORS customers.This writer also has found DORS unresponsive to the work needs of a developmentally disabled young woman in Springfield. Over the past twenty months I have helped her deal with employment issues while she has seen four different DORS counselors. Only one was helpful. One was downright rude in our presence, opening doubting the young woman qualified for DORS programs. He accused her of trying get money when all she asked for was help with training to become a nursing assistant so she could quit her low-paying, unrewarding fast food job. None of the four counselors she saw helped her with job placement; I did that by calling a local hospital and locating a job in housekeeping. In recent months, the agency has dropped the ball on a reading program it promised her a year ago."BIGGEST OBSTACLE"There are many barriers to long-term employment for people with disabilities. Social attitudes are the "biggest obstacle" to full employment, says Grothaus. In her office the motto is, "attitudes are the only disability." She believes there's a job for almost everyone, no matter what disability they have. Health care costs pose a huge dilemma.People with disabilities have more than seven times the medical expenses of the nondisabled population. But unless they are well-educated, most of the jobs they can get don't provide health insurance. The SSI Coalition estimates a person would have to make ten to fifteen dollars an hour to replace the value of their federal disability benefits. As a result, they often remain trapped in poverty on the federal welfare rolls because that's the only way to qualify for Medicare or Medicaid. A recent report by the General Accounting Office, the investigative arm of Congress, estimated 30 percent of all severely disabled people on government disability rolls are good candidates for jobs, yet less than half of l percent leave public assistance to go to work.Despite Social Security's legal mandate to refer the disabled to DORS for job-related services, many never get evaluated for their employment potential, according to Barbara Otto, executive director of the SSI Coalition. "They are completely written off and shoved onto federal programs [such as SSI] where they are expected never to work again."Of the 109,000 new disability cases processed in Illinois from October 1995, to June 1996, Social Security sent 30 percent to the state for vocational rehabilitation (VR), according to Social Security's spokesperson in Chicago, Mary Mahler. VR means any employment -related assistance, ranging from testing to see if a person can work to actual job placement. SSI recipients are eligible to participate in Social Security's Plan for Achieving Self-Support (PASS) program, which allows disability beneficiaries to keep some of their monthly benefits, including medical care, while pursuing a work goal. Only 153 SSI recipients in Illinois currently are participating in PASS, according to Mahler.PASS and Social Security's other work incentive programs are woefully under-utilized and not well understood by Social Security field office workers, according to Otto. In one phone survey by the SSI Coalition, four out of five Social Security offices in Illinois could not explain the PASS program to the caller, and the fifth referred the caller to Social Security's 800 number on the East Coast, which referred her back to the local office. As an SSI recipient, Matt Smedley qualified for the PASS program on his last job, a year-long part-time clerical training position with DORS. But his parents say they didn't learn about the program till the job was almost over. "People don't volunteer this information," says his father, Harry, referring to his dealings with the government employees assigned to help his son. "You have to pry it out. That's one of the things that's really wrong with the system." DORS counselors reportedly have had extra training in the federal government's work incentive programs. Wouldn't it make sense for them to work with Social Security representatives to insure that SSI beneficiaries take advantage of programs like PASS?It doesn't work that way, according to George McCrowey, deputy director of DORS' Bureau of Rehabilitation Services. "We have joint customers," he said in response to the question. "But what you must understand is, they [Social Security officials] determine the PASS rules. They determine the criteria for those programs. We don't."DISSATISFIED "CUSTOMERS"In the past few years DORS has gone from calling the people it serves "customers" instead of clients.The change grew out of the independent living movement, which advocates level peer interaction between the counselor and the person seeking DORS services. "Customers seemed more appropriate since ideally we work for the persons we work with," explains McCrowey.But sometimes it seems to DORS customers they are dealing with sales clerks who could care less if they are satisfied."[In Illinois ... [DORS] programs are not geared toward addressing the long-term employment outlook of the participant," Otto of the SSI Coalition told Congress in testimony last June before the Senate Special Committee on Aging. "They are most concerned about placing the participant into a job-any job-than preparing the participant for leaving the SSI rolls through long-term employment." "Traditionally one of the criticisms we hear of [DORS] is that they're not really interested in the quality of the job," says Rob Kilbury, executive director of the Coalition of Citizens with Disabilities in Illinois. "Although there's a lot of talk about a career emphasis [in the 1992 Rehabilitation Act amendments], it's a lot easier to place people in entry-level jobs." "I don't think that's a fair criticism at all," says DORS' McCrowey. "We do the best we can. We all know what the job market is at this point in time. We try and place people in the highest-paying job we can find at the time that can accommodate their skills and, if necessary, accommodate their disability." In the past year, 5,200 DORS customers found employment in what DORS considers the competitive job market, according to Skilbeck. That figure includes anyone getting a vocational service fromDORS, even if the person (or an advocate) went out and found his or her own job. Unlike most of their customers, DORS' 214 vocational rehabilitation counselors, eight in Springfield, have master's degree-level training, an excellent state salary and benefits package, including health care, and representation by a state employees' union. Skilbeck says all the counselors are highly skilled and receive continued training on the job. Others say the counselors who received their degrees more than a decade ago have a different focus. "Traditionally they've worked with people who will not return to work," says Otto. "They look at the individual from a disability perspective not a work perspective.""LOWER EXPECTATIONS"Beth Langen, paralyzed since her teens by a diving accident, relishes her position as administrator of grants and research for the Secretary of State in Springfield and counts herself among the most fortunate of state employees with severe disabilities. Her biggest job headaches are travel-related -- the lack of public transportation when her specially equipped van is in the shop, and drivers who block handicapped parking access lanes so she can't get into her van.But she is also an outspoken disability advocate, and she is concerned about what she calls "the lower expectations" of government agencies like DORS concerning employment for people with disabilities. "I'm afraid we've created a disability industry, and the people employed by it are service providers [which include DORS], not people with disabilities," she says.Despite the legal mandate "to get people in employment that matches their skills and abilities and goals," she adds, "it's easier and cheaper to send them to Goodwill in a van than to make sure they have access to all the education and training and social skills they need to be successful in the workplace. We'll always be an underclass until people say the sky's the limit whether you have a disability or not."Goodwill's sheltered workshop is meant for people with severe mental impairments, but Matt Smedley, who has normal intelligence, was sent to the Springfield facility by DORS in 1994. He lasted two weeks and was kicked out for not getting along with the other employees. Everyone involved in his case, including his counselor, agreed it was the wrong place for Matt, according to his parents.Skilbeck, the DORS' spokesperson, said Matt was dismissed in 1993 from his first job at the Illinois Assistive Technology Project after two years because of poor attendance. He only worked there for a year, his parents say. In the program, a federally funded not-for-profit effort to promote the use of technological equipment for the disabled, Matt says he was basically a "go-fer." It wasn't a real job, says his father, and Matt concedes he stopped coming in every day toward the end because there was never enough to do.In his last position, the part-time clerical trainee slot at DORS that ended in April, Matt says he also could not find enough work to do and was told to bring in a book to read."I would get there in the morning, and there was no schedule of things to do," he recalls. "I would have a little box of things to file, then I'd have to sit around and wait or bug them for things to do. That's not much of a position if you have to ask them what to do."In your job," he asked this reporter, "you finish one story and you know what to do next, right? I'd like a job like that." Matt took several tests for state jobs, and retook some until he got "A"s, the grade required to proceed further, but his applications never went anywhere. Perhaps, says Harry, who works for the Illinois Department of Transportation, that's because "we aren't politically connected, and you need a sponsor to go to the next level."In reviewing Matt's file, Skilbeck noted he missed some meetings scheduled by his counselor and didn't always follow through on phone calls and interviews. The Smedleys acknowledge Matt failed to show up for some meetings with his DORS counselor, but only the ones his parents didn't know about. Harry recalls explaining to his counselor how characteristic it is of people with severe head injuries to sometimes forget appointments, especially if they are scheduled by mail a few weeks ahead. "That's why I told his counselor, when you set a meeting, call me and I'll make sure he's there." Even when the family met with DORS several times between 1992 and 1995, they felt they were spinning wheels. According to Matt's parents, the meetings would largely consist of his counselor, and sometimes an employment specialist who is no longer with DORS, discussing jobs that might become available at some unknown future date. They would lament state cutbacks and encourage the parents to keep looking, according to his father.Matt also may not interview well and may need someone to go with him, his parents say. "That's where I figure DORS should be working," says Harry. "They never did go with him. What they should have been doing is finding jobs and telling the employers, here's someone who can do the job. He seems slow but he's mentally apt. They never did that." The Smedleys have given up on DORS. "We don't even bother to check in with his counselor anymore," says Dixie. "I don't know what people who don't have an advocate do.It's not true that people with disabilities need advocates to get any action from DORS, says McCrowey.In Matt's file there are also reports of missed meetings with the Springfield Center for Independent Living, another place DORS referred him for job leads. Matt smiled weakly at the mention of SCIL, where his mother serves on the board. "They try," he says, "but all they can do is look at the want ads. I can do that myself."SCIL, which gets its funding from DORS, has a grant of about $34,000 to place a minimum of eight people in jobs each year. The program includes teaching people how to use the want ads, acknowledges Kaylee Raymond, SCIL's employment specialist, but it also involves other job-seeking skills, such as resume writing and practice interviewing. The emphasis, she says, is on teaching and empowering people with disabilities to find their own jobs. Employment is one small component of SCIL's programs, according to Pete Roberts, executive director. Most of the people it serves are low-income and need help with a host of issues ranging from housing to transportation. SCIL is often their last recourse, he says, because they've been turned down by other agencies.WATCHDOG?DORS has a place for unhappy customers to go with their problems, the Client Assistance Program, a small advocacy agency with a $390,000 annual federal budget and nine employees.Some disability advocates say there's an inherent conflict in CAP being part of DORS. "It's like chaining the watchdog to the burglar," grumbled one disabled state employee, who asked not to be identified. Director Grothaus recognizes the conflict, but she says CAP has a great deal of autonomy and often refers cases to external legal contractors (thirty in the past year). Cases rarely go to court, she admits, because DORS employees usually follow the rules and regulations well enough to satisfy an administrative law judge.There are financial advantages to being part of DORS, says Grothaus. It saves her about $200,000 in office expenses and staff support to be housed in DORS' administrative offices, and the relationship also enables CAP to receive Social Security money for some of the DORS clients it represents. As one of CAP's five human relations representatives in 1989 and 1990, Marilyn Sanza of Springfield investigated complaints against DORS counselors. Those complaints usually involved DORS' refusal to pay for something, she said. It could be as simple as a wheelchair repair or as complex as a college education.Sanza says she wasn't inhibited, as a DORS employee, about going after DORS counselors if they were on the wrong side. She quit after fifteen months for another reason; covering forty-seven counties with an office based in Champaign was way too much driving for Sanza, who was paralyzed twenty-four years ago in a water skiing accident. The more driving she does, the more trouble she has with pressure sores from prolonged sitting.Sanza counts herself among the fortunate few who can afford not to work because her husband has a good income, and she fills her need to help others by volunteering at Blessed Sacrament School. She, cautions, however, that employers are missing out on a special worker when they refuse to hire people like Matt. "In areas of high turnover, employers need to think of hiring people with disabilities," she says. "Repetitive tasks don't necessarily make us burn out. We're hardly ever absent, we're hardly ever sick, that's something to be saluted."A job with repetitive chores is ideal for a person with a brain injury, say Matt's parents. Currently, to fill his time when he's not working, he is taking classes in office procedures at Lawrence Adult Center. As Matt makes the rounds of Springfield businesses that have advertised jobs in recent weeks, he writes on each application that he's had a head injury. Although he can't prove it, he is convinced his disability is keeping him from getting hired."I cannot hide my disability," he says, noting his canes and wheelchair. "When I go to apply, people seem nice, but rarely, if ever, do they call me for an interview. They say thank you for coming in, I'll give it to the supervisor, and I never hear again."It breaks his father's heart when Matt tells him on a weekly basis, "I'm a bum." He worries about what will happen to Matt when he and Dixie are gone. "If I get killed tomorrow," says Harry, "I want him to be able to live on his own." Matt talks wistfully of the jobs he could do and the places he has applied, from discount and hardware stores to video rental shops and movie theaters, from mailrooms to dry cleaners to car washes. He has watched the employees there and says, "I know I could do their jobs if someone would give me a chance."