6

EARLY ADOPTERS AND TEARING DOWN ASSUMPTIONS

Marc Gold wore a ponytail pulled tightly back and a thick, black mustache in Fu Manchu style. He’d grown up the son of a bicycle shop owner in San Francisco but had become a special educator in Los Angeles by the late 1960s. He found that the way teachers and administrators viewed their students with disabilities had little regard for possibilities. By the time he left for graduate school in Illinois, where among other things he studied psychology, disability, and adult learning, Gold had formulated what would later become his major contribution to the field. As a teacher he saw that students with disabilities had much more potential than many believed and that given the right supports and offered equitable opportunities, these students could learn, grow, and hone skills to work. Always the one to question dogma, especially when those doctrines were used to keep people down, devalued, and destitute, Gold began to study the way in which people who were labeled “mentally retarded” in the 1970s were treated, educated, and trained. Like Blatt, he found very few professionals held the belief that all human beings are capable of growth, learning, and value. Also like Blatt and others, Marc Gold set out to explore and understand the institutions in which many people had been warehoused after they been removed from their regular communities.

Why mention he was the son of a man who owned and operated a bicycle shop? Because it was the Bendix bicycle brake that Gold used to test his central hypothesis: Perhaps it’s not the learner who is deficient or lacking in skills and intelligence, but the other way around. He would call this notion, the “Try Another Way” approach, a technique he honed and eventually used to train others in the United States and Canada. It was nothing short of revolutionary, and like all rebels regardless of their field of study, he would evoke the wrath of professionals who had invested their lives in that most dangerous of dogmas, we’ve always done it this way, and you’re only stirring things up.

The basis of the “Try Another Way” approsach to teaching complex tasks rested largely on a series of techniques that can be categorized as systematic instruction (SI). SI is a method of teaching tasks and skills that focuses on breaking learning down into specific steps such that mastering each one will lead to the acquisition of the whole. SI relies heavily on data collection but even more on the belief that if a learner is not learning, it is not their misstep but the teacher’s, hence the name Gold gave to his approach. Of course, Gold himself was working within a certain tradition, at least partially, with B. F. Skinner’s early papers on what would later be called the field of instructional design, specifically the basics that Skinner highlighted in The Science of Learning and the Art of Teaching in 1954. Obviously, Skinner would have viewed people with intellectual disabilities, and certainly the people Gold chose to teach, as needing reinforcement strategies that could be focused on more punishment than reward. Skinner’s idea that environments shape people’s actions, however, was one that Gold could see at work in the institutions he visited, both with the paid staff and those forced to live and work there. Robert Glaser’s research study on forgoing the standard norm-referenced test in 1962 and Robert Gagne’s 1965 contribution surrounding “Conditions of Learning” are also at play in how Marc Gold developed his “Try Another Way” technique. With roots in industrial-organizational psychology and what today might be categorized as positive psychology (i.e., what is right with you is just as important to focus on as what is wrong with you), systematic instruction in the hands of Marc Gold became not only a new way to think about people previously deemed unteachable but also a method to shatter the low-expectations of the disability systems (special education, vocational rehabilitation, and symptom management), systems that were addicted to treating the very problems they had helped to create, which in turn provided a never-ending loop of diagnosis, treatment, side effects, diagnosis, treatment—and more side effects.

By the mid-1970s Gold and others were taking their work inside the same type of places that Burton Blatt had infiltrated. While some things had improved, much of the country’s population of institutionalized people suffered from the same neglect and assumptions by administrators that people could not learn or benefit from training. Some institutions had rebranded themselves as “training and developmental schools” or similar monikers, but their programs were still about warehousing people, and the abuse remained rampant.

With a large box containing the Bendix bicycle brakes, Gold and his colleagues entered these facilities, sometimes by invitation, even if most were half-hearted. Gold asked to meet the people who were labeled as having low IQs, a concept he believed was flawed. After chatting a bit with the person, a workstation would be set up, containing all the pieces, that when assembled, would become a bicycle brake. Gold admitted that the task in and of itself was somewhat meaningless (in the 1970s there were not many jobs solely dedicated to putting bicycle brakes together by hand), but he was comfortable with the task and understood that to most observers it would appear complex. Nearly twenty parts were needed to build a Bendix bicycle brake; and the parts were intricate and fit together like a puzzle. The task was also a perfect example of something that could be broken down into many steps, each one teachable. For the most part, Gold’s work was just as much about convincing professionals that their minds had to change if they wanted people to learn. It was a tough sell. Most of the staff was trained in addressing behaviors (in a vacuum) and held firm to their beliefs that what they needed to know could be found in the Diagnostic and Statistical Manual of Mental Disorders (DSM).1 That is not to say that Gold and his colleagues didn’t have their fans and followers, but the “Try Another Way” approach and its associated human-istic principles were competing with the heavy history of otherness, labels of deficit, and a medical model that the field embraced from diagnosis to treatment. The application of the deficit-minded approach meant that the “cure” could take decades—maybe even a lifetime spent in an institution or sheltered workshop without any improvement, and probably more detriment.

Gold’s work stirred the true advocates, however. They took his bicycle brake task to heart and started to try in their own ways to wrest the people they knew and worked with every day from the clutches of the disability industrial complex’s hyperfocus on fixing people.2 They would be an important part of trying to reform the systems that were most rooted in subminimum wages. Interestingly, some of their efforts were stymied by the very places where they worked themselves.

Back in 1990, when I took my first job in the disability employment field, there were stories told about people who were essentially trying to close down the sheltered workshops they worked for, to end subminimum wages by getting a job for anyone who wanted to leave. The phrase “a job on-the-outside” or “a real job” is how workers with disabilities inside the 14(c) work centers referred to them. These mavericks (both the staff and the workers trying to leave) and their associated stories were usually bathed in the light of rebellion and civil rights. I’d heard of professionals who stood up to their boards of directors and paid the price by losing their jobs. There were tales of other states trying to stop new entrants into sheltered workshops, not unlike the recommendations from the congressional hearings of the 1970s and ’80s.

The catalyst for these individuals was something called Supported Employment (SE), developed and researched by Dr. Paul Wehman at Virginia Commonwealth University, and first established in every state through Title III, Part C of the Rehabilitation Act Amendments of 1986.3 Growing out of the work of deinstitutionalization, community inclusion, and systematic instruction, and the notion that people with intellectual and developmental disabilities could learn and be trained, SE was a direct affront to professionals who believed otherwise, who desired to keep sheltered workshops as the primary mode of service delivery. The basic premise behind Supported Employment was simple: people who are relegated to sheltered workshops and work activity centers can learn to do jobs that pay minimum wage in the community if given the right supports in the right environment. Under federal law SE is defined as competitive work in an integrated work setting for persons with the most severe disabilities; for whom competitive employment has not traditionally occurred; or for whom competitive employment has been interrupted or intermittent as a result of a severe disability: and who, because of the severity of their disability, need intensive support services; or extended services in order to perform such work. This term also includes transitional employment for persons with the most severe disabilities due to mental illness.4 It was clear that the powerful tools associated with SE intervention (a job coach, sometimes known as an “employment specialist,” being the most radical) would assist the eligible recipients of the supports in all aspects of the job by working side-by-side with the worker with a disability to learn a real job for real pay outside the sheltered workshop or work activity center. It was the alternative to warehousing people and paying them trivial sums, and claiming that was all they could do. Like many new approaches inside the disability industrial complex, the application and implementation of Supported Employment services would be slow—and sometimes deliberately impeded.

Much of the impetus to expand the application of SE came out of the nation’s developmental disabilities network, which was fully established when the Developmental Disabilities Act was amended in the Senate in June 1975, although several iterations of the law go back to the Kennedy administration, when funding was first set aside to support research, training, and outreach in 1961 and 1963.5 The DD Act, among other things, established three major components that make up the Developmental Disabilities Network in each state: State Developmental Disability Councils, Protection and Advocacy entities, and university centers related to developmental disabilities. These components are overseen and funded at the Administration on Community Living (ACL) at the US Department of Health and Human Services, a cabinet-level federal agency. As defined by the ACL, the entities operate with several important charges, all related to employment and disability. To understand how this network has and has not supported the rights of workers under 14(c), we must understand their respective and collective charges.

State Councils on Developmental Disabilities work to address identified needs by conducting advocacy, systems change, and capacity building efforts that promote self-determination, integration, and inclusion. Key activities include conducting outreach, providing training and technical assistance, removing barriers, developing coalitions, encouraging citizen participation, and keeping policymakers informed about disability issues.

State Protection & Advocacy Systems (P&As) are dedicated to the ongoing fight for the personal and civil rights of individuals with developmental disabilities. P&As are independent of service-providing agencies within their states and work at the state level to protect individuals with developmental disabilities by empowering them and advocating on their behalf. P&As provide legal support to traditionally unserved or underserved populations to help them navigate the legal system to achieve resolution and encourage systems change.

University Centers for Excellence in Developmental Disabilities Education, Research & Service (UCEDDs) are unique in that they are affiliated with universities, allowing them to serve as liaisons between academia and the community. UCEDDs are a nationwide network of independent but interlinked centers, representing an expansive national resource for addressing issues, finding solutions, and advancing research related to the needs of individuals with developmental disabilities and their families.6

These three types of organizations had mostly focused on dissemination until the late 1980s and into the 1990s when they began to collaborate around employment for people with the labels of ID/DD. The UCEDDs were instrumental in taking the new idea of Supported Employment into much broader practice and implementation, conducting studies, training parents on alternatives to sheltered workshops, and helping people tell their own stories of leaving sheltered, subminimum-wage work for regular jobs in the community. The Protection and Advocacy entities in each state often handled issues related to being underpaid in a sheltered workshop, among many other civil rights. It was the trade association of these Protection and Advocacy organizations that broke the news regarding Henry’s Turkey Farm; the National Disability Rights Network (NDRN) issued the report in 2011, titled “Segregated and Exploited: The Failure of the Disability Service System to Provide Quality Work.”

The DD Councils took on the charge of advocating with state legislatures about the benefits of putting valuable and flexible state dollars into matching funds with the Rehabilitation Services Administration at the Department of Education so that more funding could enter a state to actually support workers with disabilities in finding competitive integrated employment. As states tried to ramp up their ability to provide more access to Supported Employment, it seemed natural that the nonprofit agencies, many of whom operated sheltered workshops and work activity centers, would receive funding to grow their agencies’ capacity to offer support to workers with disabilities who wished to leave the buildings for a job in the community. As with much of the 14(c) story, the unintended consequences would be detrimental. One advocate said in hindsight, “Giving the sheltered workshops and day programs funds to help find people real jobs in the community was like a vegetarian wearing a full buckskin outfit. It didn’t make sense.”7 In other words, the organization that could step outside its embrace of subminimum wages and low expectations was rare. When that did happen, it usually was because the leadership of the organization had a strong vision of inclusion and fairness, along with a view that people could rise to the expectations set for them. If the leadership saw possibilities with the advent of Supported Employment to close a sheltered workshop, then action was taken. But many of these early adopters found themselves isolated and sometimes attacked for believing that workers with disabilities could leave 14(c) subminimum wages behind.

Some states were working hard to implement Supported Employment services in place of sheltered workshops. Most of these initiatives came from the state agencies responsible for funding and overseeing intellectual and developmental disabilities services and supports. Low-vision and blind advocacy groups like the NFB kept up their focus too, but at the state agencies the people behind the focus on real jobs in place of sheltered, subminimum, segregated jobs were usually commissioners like Dr. Steve Hall. Hall had completed his doctorate degree at Virginia Commonwealth University, where Dr. Paul Wehman carried out studies on Supported Employment and trained people like Hall to go out into the field and make a difference. Hall first led the effort in Indiana by delivering training and technical assistance to programs under a Supported Employment demonstration grant funded by the Rehabilitation Service Administration. In this capacity Hall toured sheltered workshops around the state and gave talks, including data, on the outcomes of subminimum wages versus Supported Employment. “It was tough work,” he told me. “There were lots of small programs that had been started by local families that had begun to take on much more of a facility type operation. It was nothing to see thirty people all huddled around a table doing packaging work. I remember someone showed me their check at one of the programs. It was for a week’s work and it didn’t total ten dollars.”

Hall would go on to become the executive director at Sycamore Services in Danville, Indiana. I was one of the first job coaches he hired for the Supported Employment program he was trying to build up there, even while the sheltered workshop held nearly a hundred people. Hall, like many others, felt he could make needed changes by leading with strong values and focusing on doing things in a different way. It would prove daunting. Hall faced resistance from the board of directors, families, and local funders. As Hall brought in grants and new sources of funding, the local vocational rehabilitation counselor was invited to use office space at Sycamore Services, where he could do intakes and drink free coffee. The trick, though, was to get the counselor to begin opening Supported Employment cases for people who wanted to leave the sheltered workshop. Since the Rehab Act of 1973 had been amended in 1992 to focus more on jobs in the community through the use of Supported Employment, it was a new idea to open cases for workers with disabilities who had been relegated to sheltered, subminimum wages. The counselor in the sheltered workshop at Sycamore Services was not convinced that would work, stating that he didn’t want to bother with the “sheltered shop.” So, to open cases for workers wishing to leave, we walked people out the back door (the facility was new and had lots of access points) and brought them in through the front door as if they had just arrived. The case would be opened, and the services were begun that would help people get and keep jobs of their choosing.

These stories illustrate a phase little known outside the disability employment complex and those knowledgeable about the system. It could perhaps be called “closing the shop from the inside out.” All over the country were examples of sincere, hardworking people trying to eliminate subminimum wages by building the capacity to offer more services directly linked to helping a person get a job outside the sheltered workshops and work activity centers. Some began to call it “changeover” and later “provider transformation,” both terms meaning that the organization holding the 14(c) certificate could develop a plan, including a budget, and with the right focus on Human Resources and solid training, including a focus on disability rights as civil rights, it could make the necessary changes. This would prove to be an approach with limited success. A potent mixture of resistance as seen in the decades-long 14(c) congressional hearings was alive and well in local communities. Still, people kept trying.

KFI is a nonprofit provider of services located in Maine. According to the agency’s executive director, Gail Fanjoy, KFI engaged in the “planned systematic abandonment of the old.”8 In 1974 the organization received a 14(c) certificate for the Katahdin Workshop in Millinocket. The Katahdin Workshop obtained subcontracts to make leather utility-knife cases, wooden seedling racks, and other products from recycled materials. In 1986, however, the organization’s leaders became passionate about changing their services, phasing out subminimum wages, and replacing them with the powerful tools of Supported Employment. KFI abolished subminimum wages in 1986. It was the same year that officials in Washington held hearings to remove the floor on subminimum wages. Fanjoy and others across the country were doing what representatives from the sheltered-workshop industry had said couldn’t be done; that fact alone is a prime example of how disability and employment policy is out of synch between those who believe in change and those who have lobbied to keep things as they are.

Gail Fanjoy credits the organization’s ability to sustain change with the energy created when people formerly considered only productive enough to work in a subminimum-wage setting began getting real jobs for real pay. When staff, families, and workers with disabilities saw others succeed outside the walls of the sheltered workshop, the momentum for change was created. Fanjoy said, “The early successes caused staff to question the efficacy of vocational training provided in segregated spaces. They reflected that the sheltered workshop taught few of the skills that people were using in their competitive jobs, and that people were better able to learn these skills on the job.” Fanjoy noted that they just decided to support people, and not groups, and work with one person at a time with a focus on real homes, real jobs, and valued social roles.9 The early adoption of better practices in lieu of sheltered workshops was happening, but far too slowly; it was easier for states to fund provider agencies to use a group model rather than an individual one. The change was difficult; since it was still perfectly legal to keep people segregated and offer only subminimum wages, that’s what happened most often.

Still, there were practitioners and researchers following the work of people like Fanjoy. Susie Rinne had worked on a process called “conversion,” an early term for organizational transformation from sheltered work to jobs in the community.

“Several community rehabilitation providers discontinued use of sub-minimum wage during that time,” said Rinne. “It looked like we might be on a path to making a dent.” The subsequent surveys by Rogan, Held, and Rinne in 2001 found those same agencies that had eliminated their reliance on 14(c) and switched their services to focus on real jobs at minimum wage or above continued to be financially viable. “In fact, many of the agencies reported improvements of their fiscal health resulting from the changeover.”10

By 1994 Dr. David Mank and others were trying to study agencies in the throes of making systems change. In an article for the Journal of the Association for Severe Handicaps, he and his fellow researchers laid out the requirements to fully embrace the true spirit of the 1973 Rehabilitation Act as amended in 1992. The title, “Realigning Organizational Culture, Resources, and Community Roles: Changeover to Community Employment,” itself describes the effort necessary to get organizations conceived and built around the unfair practice of paying workers subminimum wages to change their essential processes. As Mank pointed out, different financing and radically different mindsets on behalf of the agency’s staff, board, family members, and workers with disabilities themselves would be required. Nothing short of something radical would create the desired change, but for some, “change over” was too slow. In a reader’s response to the Mank article, a husband-and-wife team from California, the Zivolichs, argued that progress was stymied by talk of “planning to plan to change,” a phrase that certainly has weight inside the disability industrial complex, where change is yet another reason to lobby, hold conferences, or author a white paper. Their reaction was published in 1995, titled “If Not Now, When? The Case Against Waiting for Sheltered Workshop Changeover.” The article was brief but passionate and reflected the feelings of thousands of professionals and family members regarding the lack of responsiveness from a system that had been the heart of congressional hearings for decades and fifteen years after the Wall Street Journal exposés. As so often: the alarm is sounded, studies and hearings are conducted, recommendations are made, and still more stalling, more phasing out ensues, and more time is requested to fix the problems and abuses.

The study of organizations wasn’t a new concept twenty-five years ago, but it was a novel idea when directed toward the kind of sheltered-workshop settings that had gone relatively unchanged for decades. When the principles of systems change were levied against the settings where subminimum wages were the norm, a predictable set of outcomes often rose to the surface. Research related specifically to human services and change demonstrates why most sheltered workshops run by nonprofits didn’t respond more rapidly. Gordon Shen and Lonnie Snowden have studied how change does or does not occur in mental health systems. The authors state, “The pattern of policy diffusion reflects readiness for change and propensity to take political risks. Tracing the sigma-curve of innovation diffusion, a few early-adopters (“innovators”) are followed by a critical mass of late-adopters (“laggards”) and non-adopters (“resisters”). The phase of policy adoption lends itself as a predictor of mental health system change.”11 There’s a satisfying labeling role reversal going on here, whereby the penchant of the disability industrial complex for labeling people with disabilities is turned back on itself with the Shen and Snowden labels of “laggards” and “resisters” applied to organizations. Using the descriptors above as related to sheltered workshops shifting to a model of supported employment, many late-adopters (laggards) simply added onto their services instead of making a complete changeover. As for resisters, or nonadopters, their voices were amplified by state and national trade organizations so that the expectations from the funders of their programs were less formal and permitted a dual system in which significant investments in buildings and segregated, subminimum wages, with a much smaller investment or concern with offering supported employment.

A national advocacy organization, unlike the ones representing the sheltered-workshop industry, had come into its own as well. APSE, first known as the Association of Persons in Supported Employment, was the brainchild of two of Dr. Paul Wehman’s graduate students. It was still a fledgling organization in 1995, but because it sought out people—both with and without disabilities—who believed everyone could work in the community for regular wages, it was the essence of the very best of grassroots associations: subversive, disruptive, creative, committed, passionate, and irreverent. Also in 1995 Pat Rogan and Stephen Murphy published one of the first manuals related to organizational change, a book that would have a somewhat underground existence, Closing the Shop: Conversion from Sheltered to Integrated Work. The authors profiled four agencies embroiled in a changeover; like the papers by Mank and responses like that of the Zivoliches, they spent time on the organizational dynamics at play to make such a shift. The early adopters of replacing subminimum wages with regular jobs in the community included individuals with disabilities, families, organizations, researchers, and practitioners, but when Congress again chose to take up the issue at the start of the new millennium, there was no concerted effort regarding what should govern the billions of dollars spent each year on the pursuit of vocational rehabilitation, training, and support for workers with intellectual and developmental disabilities. An alternative approach existed now, however, in the tools and practices of Supported Employment, which had been substantiated by federal authorization. Would its availability be expanded? Who would benefit from such developments, workers with disabilities or the structures that purported to serve their best interests? Those sheltered workshops labeled as laggards and resisters had the upper hand because the disability industrial complex helped keep wholesale change at bay. The resisters had passion, but as the writer and academic Eddie Glaude has pointed out, what we believe to be true is a stronger motivator than what we know, what we can observe and measure. The lie that subminimum wages were, for some, for their own good would require a whole lot of speaking truth to power.