‘Last Minority’ : Disabled: Success in Workplace

MADISON, Wis. —  For 25 years, Kenneth B. was considered so retarded he was locked in a state institution. When he got out last fall, he did not know how to open a car door or dial a telephone. “It was as if he came from the moon,” a friend recalls.

Now, the stocky 32-year-old man unlocks Lombardino’s Italian restaurant each morning at 8. He mops, vacuums and cleans amid the cluttered tables and hanging Chianti bottles. Today, Kenneth B. pays taxes, shares an apartment with two other men, rides city buses, uses a coin laundry and likes to ski cross-country.

Several blocks away from the restaurant, Brenda S. gets on-the-job training in the city clerk’s office. At 21, she is severely retarded, confined to a wheelchair, suffering from cerebral palsy, and unable to talk, walk, read or write.

Finds Overlooked Checks

But on a recent morning, she slowly folded and stamped letters, helped file tax records, and then examined discarded envelopes for overlooked tax checks. By lunchtime, she had found more than $3,700 for the cash-strapped city. She grinned in delight.

Todd and Christie, both 14, work at a nearby travel agency. Together, they slowly sort papers for filing. Concentrating carefully, Christie holds up each document, and Todd tells her which color-coded file box to use.

Neither could do the job alone. Todd is mildly retarded and was born with no arms or legs. Christie is severely retarded. By sharing their limited abilities they become a “composite” worker.

These are a few of the startling success stories in a city that has drawn international attention as a beachhead for a small but growing revolution in the education, training and employment of the nation’s 3.9 million severely handicapped--the lowest functioning 1.5% of Americans.

‘Real Job’ for Everyone

“People who could never work are working,” said Lou Brown, a tall, energetic 46-year-old University of Wisconsin professor of special education who has fought to integrate the severely handicapped into schools and jobs here. “Now the goal is for everyone, no matter how badly handicapped, to go to a real job in the real world.

“Not one of our kids can do the job of a normal person,” Brown added. “But every single one can do one job, one thing that a normal person can. That’s enough. If you can move a finger, I’ll get you a job. If you can blink an eye, I’ll get you a job.”

It is no idle boast. Brown and a handful of like-minded professionals around the country, supported by active parents and influential advocates in the Reagan Administration, are challenging 40 years of government policies and academic programs that segregated the severely handicapped from those living, working and playing in the community.

“This is the last minority,” said Paul Wehman, director of the Virginia Commonwealth University Rehabilitation Research and Training Center in Richmond. “Literally thousands and thousands of disabled people in this country, given the proper amount of opportunity and support, would be able to work in real jobs.”

The challenge is formidable. Most of the severely handicapped are unemployed, and more than 153,000 are still confined to institutions. About 211,000 others do repetitive work or sit idly in segregated “sheltered workshops” or in custodial “day activity” centers. Studies indicate that they have little contact with non-handicapped people, require constant supervision and show few benefits.

But evidence from dozens of training and employment programs from Seattle to San Diego, from Richmond, Va., to Minneapolis, from Burlington, Vt., to Valdosta, Ga., is showing that the severely handicapped--the mentally retarded, the autistic, the epileptic, those with cerebral palsy, Down’s syndrome or a combination of handicaps--are capable of far more than was thought possible a few years ago.

Last year alone, an estimated 22,500 severely handicapped moved into America’s mainstream, getting real jobs alongside non-handicapped workers. They earned $117 million and saved about $35 million more for taxpayers, according to a study released last Monday by the Department of Health and Human Services. That represented a 41% increase over 1983, the study estimated.

Benefit to Community

“People we assumed were not able to make it at all are now making it in the community,” said Dr. Bill Kiernan, who headed the study as a director of rehabilitation at Boston Children’s Hospital.

Many need extensive on-the-job training and special tools. Their hours, wages and output are usually low. And some fail. But in virtually every case, studies show, the cost is less than current programs. And the results are often dramatic.

“There is no doubt of the benefits, absolutely no doubt,” said Beverly Payne, whose retarded and disabled 24-year-old daughter, Debby, helps stock the pharmacy at Madison General Hospital. “She leaves here every morning with the most beautiful smile on her face because she’s going to work. She’s become more independent. She has friends. She’s surviving.”

“They become proud, they have improved self-esteem,” said Deborah Patterson, who runs a three-year-old jobs program in Burlington. “Like everyone else, they have a purpose. They have a reason to get up in the morning. Plus, they become taxpayers. They pay into a system that they used to draw from.”

Positive Trend Noted

Pressure is building to develop such alternatives. Ten years ago, Congress mandated free appropriate education for all handicapped children. Each year now, a new group of 90,000 with severe handicaps is graduating from special education programs--with greater social, learning and job skills than ever before. Most have spent a decade studying, playing and eating in schools with non-handicapped children.

“These people are very different than their twins 10 years ago,” said Jean K. Elder, commissioner of the Administration on Developmental Disabilities in the Department of Health and Human Services. “They have different expectations, and their parents have different expectations. And now the professionals have different expectations.”

“It’s simple: If they can go to school successfully, they can live and work in the community successfully,” said Alan Abeson, executive director of the Washington-based Assn. for Retarded Citizens U.S., an advocacy group that claims 160,000 members. The group now estimates that with proper training, three out of four children with mental retardation could be self-supporting as adults, and another 10% to 15% could be partially self-supporting.

Critics See False Hopes

But critics say the pioneering work programs offer false hopes and unrealistic promises to many anguished parents. They say there is not the money, the trained staff, the jobs or the community support to employ most of the severely handicapped. Brown and his colleagues have been shouted down by other educators at forums, and the head of one professional organization dismisses them as the “radical fringe.”

The debate has wide implications. Federal and state governments currently spend $14.3 billion a year for the “developmentally disabled.” Many experts fear these costs could skyrocket in coming years unless more of the disabled become self-sufficient.

The federal government gives tax credits to businesses that hire the handicapped. But there are still daunting financial disincentives for states, counties or parents to help the handicapped get jobs.

State and county officials, for example, complain that they must pay when persons leave federally funded institutions for community programs. And parents of the handicapped fear losing benefits since Social Security disability and Medicaid rules prohibit work, or discourage it by limiting outside income. Congress has approved some leeway for Medicaid recipients, but the risk is still high.

Cuts ‘Huge Disincentive’

“We are encouraging people to go to work but if they earn more than $300 a month, they find their (disability) benefits are cut off,” said Monroe Berkowitz, an economist at Rutgers University in New Brunswick, N.J., who has studied the problem. “That’s a huge disincentive.”

Public policy is starting to shift, however. Both Elder in the Department of Health and Human Services and Madeleine Will, assistant secretary for Special Education and Rehabilitative Services in the Department of Education, have declared “supported work” a priority and are encouraging it across the country.

Will’s department will spend $5 million this summer for experimental job projects. Elder’s department has set a goal of helping 50,000 handicapped find jobs this year, and another 75,000 next year. Congress has allocated $6.3 million to develop special job training and transition services, and millions more are being shifted from other on-going programs.

“There’s no reason severely disabled people can’t function in the marketplace, given the proper support and training,” said Will, whose 12-year-old son has Down’s syndrome. “I think it’s an auspicious moment.”

Long Way to Go

But if a revolution has begun, it has a long way to go. Despite the success of national schooling for the handicapped, the future appears bleak for most graduates. Mandated services stop as soon as they leave school.

“Basically, they’re all dressed up with nowhere to go,” said Jane West, staff director of the Senate Subcommittee on the Handicapped.

“We’ve found out almost no one has jobs, and most of them are sitting at home a year after graduation,” said James W. Conroy, head of research in developmental disabilities at Temple University in Philadelphia. “For families, it’s a crisis.”

The only option for many disabled persons is the sheltered workshops and day activity centers, which have come under increasing scrutiny.

Usually run by private charities, the workshops do repetitive work, such as sorting bolts and sealing bags, to fill industrial subcontracts. The activity centers usually offer day-care and simple arts and crafts such as stringing beads. Average wages are low: about $817 a year in the workshops and about $160 a year in the centers, according to the Kiernan study.

Critics of such programs contend that many are exploitative ghettos, where adults are treated as children, where the work is boring and repetitive and where, because there are no role models to copy, the worst behavior becomes the norm.

“Why should we pay for 10 or 12 years of schooling only to put them in the exact same programs they would have gone in without ever going to school?” asked G. Thomas Bellamy, an educator at the University of Oregon who has designed a broad array of employment programs.

Skepticism Remains

Many who run the workshops and day centers say they agree in principle with the supported work concept. But they are skeptical that such programs can be widely replicated or should replace the workshops and centers.

“There is a radical fringe element that is telling all the parents of these kids that utopia is just around the corner, if they can just put out of business these bad dead-end workshops,” said James A. Cox Jr., head of the National Assn. of Rehabilitation Facilities, a Washington-based trade group representing about 600 workshops and other facilities for the handicapped. “That’s just bad misrepresentation . . . because there’s no alternative now.”

“The idea that’s coming out of Washington that all this can be done without new appropriations is just so much poppycock,” agreed Max Arrell, president of the 50-state Council of State Administrators of Vocational Rehabilitation and head of the Texas Rehabilitation Commission. “You’ve got no place to put these people and no one to support them.”

But across the country, cheaper, proven community-based alternatives are emerging.

In Eugene, Ore., for example, 16 severely or profoundly retarded workers earn minimum wage and assemble electronic boards and components in an “enclave” at a large electronics plant. Five job coaches break down each task into separate steps and give personal help. The model has been copied 14 times in four states, using bakeries, landscapers and other businesses.

Businesses Lauded

In San Diego, more than 100 severely handicapped youths are getting on-the-job training. “We have found the business community is much more willing and supportive than anyone has given them credit for,” said Ian Pumpian, a San Diego State University educator who runs the program.

In Burlington, teachers are training 14 severely handicapped teen-agers at a farm, food co-op, a gymnasium and other job sites.

“The doomsayers say it won’t work,” said Robert DiFerdinando, special education coordinator at South Burlington Middle School. “Well, the kids do such a good job the employers want to hire them out of school. We have to fight to keep them in school.”

In addition, 91 handicapped adults got two to six months on-the-job training and got jobs in five Vermont counties since 1980. About 60 are still working and are earning at least minimum wage. The average monthly salary is $370.

“It’s incredibly cost effective,” said R. Timm Vogelsberg, a special educator at the University of Vermont. “Over three years, it would cost $15,000 to keep someone in a day activity program. In the same time, it costs us less than $9,000 for training and monitoring. So it’s a $6,000 savings, plus he’s paying taxes.”

Attention From Abroad

But the Madison programs offer perhaps the widest variety. The city draws educators and officials from as far away as Australia, Denmark, Spain and Switzerland to study its progress.

Between 1971 and 1978, a study found, 53 severely handicapped students were graduated from district schools. Only one held a real job. Then teachers revised curriculum to stress basic living skills: crossing streets, taking buses, dressing and grooming, using money.

Soon, every handicapped student over 11 began working several hours a week with a trainer at one of 112 city job sites, from the hospital to a French restaurant, from state offices to grocery stores. Today, of 61 graduates since 1979, 48 are employed, including every graduate since 1982. The savings are about $3,000 a year per person.

To work, the handicapped person often requires months of personal training, assistance from specially built devices called “jigs” and step-by-step diagrams. The jigs are individually designed--just as eyeglasses or hearing aids are designed to correct impairments.

So at the American Red Cross, a severly retarded woman named Robin has little movement but can jerk her hand forward. An electronic stapler was adapted to utilize that motion. She now pushes a spring-loaded tray under the gun, which then staples the paper.

‘Composite Kids’

Sometimes two handicapped persons work together--combined to form what Brown calls “composite kids.”

“We got a guy with cerebral palsy who loves to walk,” Brown said. “In fact, he’s in pain when he sits down. Very simple. We got him a job delivering papers. We got a guy in a wheelchair who could roll up papers and put a rubber band around them. They work together.”

“We’re breaking stereotypes of what these people can do,” said Pat Rogan, a doctoral student who works with Brown. “Now the sky’s the limit.”

For those with behavior problems, the challenge is to find the right job, Brown said.

“We had a kid with real high energy,” Brown said. “Before, they’d either drug him or tie him down. He’d drive everybody crazy in a sit-down job. So we get him a job delivering and busing tables. He comes home exhausted. His home loves it.

“Then we had a kid who started fires in a pizza parlor, in a hotel, towels at a Howard Johnson. Where are you going to get him a job? In a firehouse. He loves it. We figure even if he starts a fire, they can use the practice.”

Risks Worth Dangers

There are clearly dangers. One handicapped man was arrested for child abuse in a public lavatory. Others have had toilet problems or other accidents, and some use their new income to buy drugs or alcohol.

But to Brown and his colleagues, those risks are worth the dangers.

“We’re breaking ground,” he said. “So there are going to be mistakes. It’s inevitable. That’s the scariest part. What if a kid accidentally sets fire to a place and kills someone? What if a kid slips under a bus? Or gets mugged some night or hurt on the job? It’s inevitable.

“There are risks. But there’s dignity in risks. That’s what life is about. Dignity.”