Identity

Why Are People Trying to Take My Disabled Daughter's Job Away?

Rachel works in a local factory sorting spare parts for less than minimum wage. People say she's being exploited, but I've never seen her happier.

by Jane Bernstein
May 1 2016, 1:00pm

Marne Grahlman

I'm always struck by how quiet it is inside the Training and Outsourcing Center (TOC), a "sheltered workshop" in McKees Rocks, Pennsylvania where my daughter Rachel works. In the big well-lit space, one of three work areas in this former warehouse, 60 or so men and women are spread out at tables beside boxes or plastic trays filled with items to be assembled—coiled metal snakes, attachments for drain cleaning equipment, and rubber stoppers. You can feel a sense of purpose in the room, and yet to say that everyone is working diligently doesn't quite describe the scene. One man is busy sorting screws, while his neighbor, in a wheelchair, stares into space, now and again tying tags onto the loops of plastic sports bottle tops. At another table, near two workers assembling parts of a device, a young woman rocks vigorously back and forth, talking to herself, and occasionally putting a sheath of papers in an envelope, and checking to make sure the address label appears in the clear window.

My daughter sits in the far corner of the room, placing small metal "arrowheads" into clear plastic boxes. The woman beside her carefully affixes a tiny American flag sticker to the side of each box. Rachel is 31 and has been at TOC since 2005, when she graduated from the Children's Institute in Pittsburgh. She has intellectual and fine motor impairments. Her vision is limited; her language is "abundant and disordered"–a therapist's description from years back. She will waylay store clerks, servers at restaurants, anyone who crosses her path, capturing their attention with a coherent question and then going off on an endless tangent made up of overhead sentences and favorite loops.

Not at TOC, where she sits quietly, absorbed by her task.

When I ask what she's doing, she patiently explains: "These are arrowheads. I'm going to show you an example. You see the silver? We have to put one in each box. Then they count everything you do."

Assembly line floor

Rachel at work

It thrills me to see my daughter productive and content. When I mention her success at TOC, I'm often asked, to my surprise, who pays for all of this. Federal block grants go to the states, the kind of funding tax-averse politicians and their constituents rail against. The Federal money they claim is wasted on "welfare moochers" is spent on support services for children or the aged, for people with mental health, intellectual, or physical disabilities.

But these days my pleasure at seeing Rachel at work is tinged with anxiety. This kind of supported worksite is being phased out in every state. If TOC is shuttered, she will lose her job, her community, and all the steadiness and satisfaction she has found since she's begun to work here.

The move to close worksites dates back to 1999, when the Supreme Court ruled that keeping people with disabilities in separate work settings was a civil rights violation under the Americans with Disabilities Act. In 2002, Vermont became the first state to close all the workshops. Other states followed. But it wasn't until a 2014 agreement with the State of Rhode Island that the Federal government began putting serious pressure on the remaining states to address what was considered unnecessary segregation.

There's a long ugly history of segregation and abuse of men and women with intellectual disabilities. Disability advocates, see sheltered workshops as hothouses for discrimination and have pushed hard to dismantle them all. Some of what they've uncovered has been shocking: 21 men in Iowa, imprisoned for decades in a vermin-infested house, forced to gut turkeys for pennies an hour. In Rhode Island, disabled men and women publicly testified that they wanted to work in inclusive settings and were shunted into what the New York Times called the "workplace serfdom" of sheltered workshops, some only earning $1.57 an hour.

This sub-minimum wage, allowable under the Department of Labor's Fair Labor Standards Act, is a major grievance among those who advocate closing all worksites. Though it has been a source of exploitation, the act is meant to make employment possible for severely disabled workers who cannot do a job as quickly or effectively as a typical worker. The complex formula that determines the adjusted wage of each disabled worker makes it possible for companies to hire Rachel and her cohort.

Now, though the pendulum has swung so far in the direction of integrating the disabled into conventional worksites that what prevails is the troubling assumption that an inclusive setting is what's best for all, as if with the proper supports, every disabled man and woman can work in an inclusive setting and earn the same wages as a typical worker.

"Bring me a person who's in a coma and ... until they get out of the coma we won't try to get them a job. But anyone else, let's work on it," Disability advocate Michael Callahan said on an NPR report on April 14, 2015.

Others with less radical views acknowledge that inclusion can't work for a significant percentage of men and women in supported worksites. In Vermont, a model for policy makers in other states, only 40 percent of individuals with intellectual and developmental disabilities are in integrated employment. The remainder are in "community-based, integrated non-work activities." In other words, day programs.

In March, I visited one of these "day programs," where forty men and women were sitting listlessly in a circle while little girls in costume danced the Irish reel. I was chilled by what I saw, reminded that the shuttering of worksites will bring as much human misery as it is meant to correct. Not only for my daughter, who does like sitting around, but for the men and women who want to work, but cannot or do not wish to work in the idealized one-size-fits all-inclusive sites envisioned by Michael Callahan and others.

What will happen to Rachel if TOC closes? What could she do?

For years, that question dominated my life: What could Rachel do?

From the time she was an infant, I spent hours madly searching for toys that could engage a child whose disabilities closed her out of so many activities. She could not manipulate the buttons and dials on most toys or follow the images on TV. Narrative did not engage her, nor did picture books. She was so distractible the tweeting of a bird would throw her off task. If someone opened the refrigerator, one floor down, she'd hear the sound of an untwisted lid, forget the shoe she was supposed to take off, and call, "May I have a pickle?"

For years, that question dominated my life: What could Rachel do?

Daily life, with its ordinary tumult, was stressful for her, full of conversations she could not join, family members plugged into activities from which she felt excluded. All she had was that abundant, disordered language, and a relentless demand to be heard. I saw glimmers of my daughter's big, bright personality, but as she grew older, her behavior worsened. She was just difficult – at home, at school, in the community.

Years before I began to stress about what she might do when she graduated from school, there was the immediate concern of what she might do at home, apart from following us around, making it impossible for anyone to finish a sentence.

One day when she was around ten, I brought home a plastic box of beads. Though she lacked the fine-motor control to do shirt buttons, tie shoes, or write, she could work a semi-rigid plastic string through the small hole of a bead. She enjoyed it, too. Soon, a routine developed: Every evening, she listened to sports on ESPN while stringing beads. Seeing her absorbed by this simple task was a powerful sight, proof she could quiet down, she could do something.

By law, all children with disabilities must begin "the transition process" by age sixteen. This is a time when teachers and parents help students prepare for life when school is over, and all the entitlements programs abruptly end. Transition is meant to be collaborative, with person-centered planning at its heart. Since Rachel could not articulate her desires, my role, and her teachers', was to listen and observe, to reinforce the skills that would help her in later life. Rachel needed structure. That was evident. She needed to work.

Three years before her graduation I sat in on her work skills class. Only then did I fully understand how many skills one needed to hold a job. To work meant being able to sit in one place and focus on the task, (sorting small rubber wheels into baggies, on the day of my visit). It meant asking for more supplies if yours ran out. Behaving in an appropriate way. Understanding basic safety skills. Getting dressed in the morning, negotiating transportation. It meant wanting to work.

Rachel with family

Her teachers didn't see work as part of Rachel's future. The head of the career education program at her school was clear: Rachel would need intense, long-range job coaching. Those kinds of supports just weren't there. Even if there was available funding—and that was a giant "if"— the job coaching provided by the Office of Vocational Training was designed to fade, to be short-term.

I could not afford to give up, so I kept pushing.

In her last year of school, she was given the chance to work part time at Goodwill Industries. For this five-month trial, she was sent to a huge noisy warehouse to hang clothes. I visited her at this worksite and saw her struggle with the job she could not do, in the most taxing environment possible.

The report I received afterwards described her as "attention seeking, frequently asking others to complete work for her." She claimed she couldn't do something when she didn't want to do it, kept saying she was done, unlike others who requested more supplies. Consider a day program, I was told.

A day program would crush her spirit. She would alienate everyone around her, interrupting, talking, cursing, screaming, out of control.

I visited local worksites, saw the kinds of dim warehouses activists wanted to close down, where older men and women sat at long tables in a dejected way and were sent home for stretches of time if no contracts came in.

Then an idealistic "supports coordinator," or caseworker, took us to TOC.


A day program would crush her spirit. She would alienate everyone around her, interrupting, talking, cursing, screaming, out of control.

I remember the natural light, the quiet, the good feel about the place. I remember the supports coordinator explaining that at TOC the job coaches were on site, so no external job-training funds would be needed. I did not know that TOC took people with behavioral problems who'd been rejected elsewhere, or that at this site the staffing ratio is 6 or 7 workers to one job coach, well above the staffing ratio of fifteen workers to one job coach, as set by law.

When a job arrives at TOC, Manager Todd Pontious breaks it down into eight or ten steps. Then the on-site job coaches, who've evaluated each person's abilities and interests, train workers for the new jobs they might do best. Adaptations are made for people with physical disabilities—jigs, rough mats to keep the tools and supplies from sliding. Todd puts parts from a packaging kit in the photocopier and hands out the copies, so workers can see how many screws or nuts to sort. He cuts holes into cardboard so a man with only one functional hand can use a drill.

Job coaches know each person's behavior, as well as their abilities. They can predict when one man is about to have a seizure. They wake another man who keeps falling asleep.

I asked Todd why he'd thought of my daughter, who'd flunked out of Goodwill, might fit in at TOC, when she first arrived. My question surprised him. "She could do the work," he said plainly. To address her extreme distractibility, he gave her a workstation facing a wall, in the far corner of the room. This simplest adaptation makes it possible for her to focus. She became a "good producer." She can sort arrowheads into a box, help assemble flood guards and snakes, grease the tiniest screw and work it into a hole.

When worksites are closed in every state, the funds that paid for them are supposed to go toward the intensive support and services that would enable an individual to work in an inclusive setting. If one of these sites existed for Rachel, and could be tailored to her needs, she'd need an aide for transportation. Job coaching that would not fade. Supervision to protect her from danger and abuse but this funding does not exist.

Though Pennsylvania hasn't yet closed down sheltered workshops, there's a heavy push toward competitive employment. Meanwhile, the state is in the midst of its longest budget impasse in 45 years. A supervisor at a county agency said 250 – 300 people were on long waiting lists for support services. According to the Pennsylvania Waiting List Campaign (a site dedicated to tracking long wait lists for services that serve intellectually disabled) ,as of December 31, 2015, 13,886 are on waiting lists for services. This situation is the same for nearly every state. Hundreds of thousands of individuals are denied the funds that would enable them to live and work where they choose.

Some in the disability community equate the closing of sheltered workshops with school desegregation. It's a bumpy road, they admit. But it's the government's civil rights obligation to help people over whatever hurdles exist. Demand the accommodations your daughter would need in a more inclusive setting, they say. Don't back down.

But if inclusion works for everyone with a disability, why are 60 percent of the men and women who'd once been in Vermont's sheltered workshops now in day programs, deprived of structure and meaningful activity? What kind of model abandons so many people?

Among the broad range of people at TOC are a few who have arrived from more inclusive sites. A man in his 70s was bored at the day program for seniors and now works here. A sixty-year-old woman waited for a year to get the funding to work at TOC: she takes two buses by herself to get to work.

Rachel tells me she's happy at this worksite. "Cause it's easy and you can get to know everybody." When I ask what she likes best, she says, "the ceiling."

So I am left, once again, to speak on her behalf, to explain: Rachel loves her job at TOC. Her friends are here. Her boyfriends are working with tools in the next room, where the radio plays "Maggie May" and "The Sultans of Swing." She's respected, feels safe, likes getting a paycheck. She feels a sense of pride at the end of the day, the satisfaction of having done a good day's work.