10

OREGON, RHODE ISLAND, AND THE PROMISE OF A WAY FORWARD

If you’re Vanita Gupta, it would be difficult to ignore or rationalize what had transpired in relation to disability and employment over the four years from 2009 to 2013. As a litigator and a person deeply steeped in a sense of civil rights for all, Gupta was appalled at what the men endured at Henry’s Turkey Service, but she also knew, as Anil Lewis did, that violations of a human being’s basic rights can come shrouded in benevolence, cloaked in a facade of care, protection, and paternalism. She started her career at the NAACP where she was a staff attorney. Her career was meteoric, but Gupta is a brilliant thinker, possessing a legal mind that misses nothing. At the NAACP she used her talents and sense of justice to save thirty-eight people in Texas who had been wrongly convicted, pardoned by Governor Rick Perry. By 2006 she had moved from the NAACP to the ACLU where she continued her focus on helping those with few options for representation, including forcing a privately run prison to stop its unlawful and immoral practice of detaining immigrant children. Appointed by President Barack Obama as the chief civil-rights prosecutor for the United States, Gupta oversaw a wide range of criminal and civil-enforcement efforts to ensure equal justice and protect equal opportunity for all, including LGBTQ rights, criminal-justice reform, human-trafficking cases, voter ID violations, and investigations into the police forces in Ferguson, Missouri; Chicago; and Baltimore. Serving as acting assistant attorney general and head of the US Department of Justice’s Civil Rights Division, Gupta didn’t shy away from cases involving disability rights, even ones like the case in Oregon, which on its surface could be explained away with faux pity, the misapplication of the concept of self-determination, and involvement from lobbyists for the disability industrial complex and parents of workers with disabilities being paid pennies per hour in sheltered workshops in Beaverton, Oregon, and elsewhere in the state.

Before Gupta had left the ACLU and was appointed by President Obama a year later, the attorneys at the Department of Justice had already provided a statement of interest in an initial complaint coming from workers and families in Oregon. The basis of the initial investigations focused on violations of the Supreme Court Olmstead decision, along with wanton disregard for the ADA and the amended Rehabilitation Acts of 1973. The DOJ attorneys signaled their mounting pressure for the state of Oregon to adhere to those landmark pieces of legislation. The DOJ released a statement: “The unwarranted placement of persons with disabilities in sheltered workshops similarly perpetuates ‘unwarranted assumptions’ that such persons are ‘incapable or unworthy’ of working in competitive employment or interacting with non-disabled co-workers or customers.”

While the Henry’s Turkey Service case had been explosive inside the disability industrial complex, with violations of 3(m) housing credit and the obvious pay exploitation, the Oregon case highlighted a new and intimidating development for the nonprofits running employment programs that relied on paying workers subminimum wages. HTS had been something that lobbyists and trade organizations tried to label as an exception to the rule. They believed more oversight by USDOL’s Wage and Hour Division and closer auditing, both financially and programmatically, by state officials was the answer. But Oregon was different in that the attorneys for the DOJ were not solely arguing against the use of subminimum wages, but in addition and with more emphasis, the placement of people with intellectual and developmental disabilities into the sheltered-workshop system on a wholesale basis. Students in special education and those people applying for services in Oregon were routinely shuttled into a pipeline to programs that offered very little employment in real jobs, but rather almost entirely focused their use of taxpayer dollars on underwriting the operations of the 14(c) sheltered workshops, denying workers with disabilities access to “the least restrictive setting” and instead relying on outdated modes of intervention and support. It was as if nothing had changed in terms of the state’s funding, provider expectations, and the application of civil rights from the 1970s until 2013. The four decades of progress with the courts, public policy, and the advent of supported employment and customized-employment methodologies had been largely ignored, and the operations of the sheltered workshops had gone on robustly, with cheap labor for the secured in-house contracts, while state and federal funds were used for the purported outcome of “rehabilitation,” and “habilitation.” Now the gig was up, and someone other than Congress, lobbied by the state and national trade groups, had taken an interest in how the sheltered workshops using 14(c) were continuing to operate. The bill from Rep. Stearns of Florida and others two years earlier had failed to pass, yet here was the country’s premier law enforcement agency seriously scrutinizing the setting (segregated disability programs) and the options presented by those programs as a possible violation of laws already on the books, most specifically, Olmstead and the ADA. It was not just Oregon though; more than forty-four states were using subminimum wages, and sheltered workshops were still widely in use—but the state was quickly becoming a bellwether for the country.

Almost immediately the lobbyists and trade groups kicked into high gear once again, aiming to put a halt to the DOJ’s interest in Oregon’s sheltered workshops. If that linchpin was allowed to be pulled, not only would other states’ subminimum-wages practices become embroiled in the scrutiny but so would the low expectations and lack of concrete outcomes that the disability industrial complex relied upon. This wasn’t some businessman from Texas trafficking men from state institutions to a tiny town in Iowa to slaughter and process turkeys; this was the federal government looking closely at a little-known and obscure system that had thrived and largely been untouched by congressional attempts for six decades.

Shortly after the case in Oregon became of interest to the DOJ, I was scheduled to provide training at the offices of NISH, the National Industries for the Severely Handicapped—now known as SourceAmerica. In 2015 the name change became important after an insider handed over audio recordings of backroom dealings where special considerations were being given to some of its network of nonprofit agencies for kickbacks. Wiki tapes were released, and the story made the investigatory arm of CNN.1 SourceAmerica officials denied any wrongdoing, and the case against it was partly found to be lacking merit. “We continue to stand fully behind our prior statements that the allegations being made against SourceAmerica in recent media stories are simply without merit. These allegations are the same that were made against SourceAmerica last year and are being made by the same disgruntled nonprofits and individuals. A recent court decision rejected similar accusations in a separate lawsuit, and SourceAmerica is continuing to vigorously defend itself against these unfounded allegations.”2

I had worked with programs across the country that were affiliates of SourceAmerica. Most were hard working and dedicated, but they often found it difficult to bypass their reliance on the government contracts that employed workers with disabilities. I had been asked to provide training on the use of the powerful tools of customized employment: taking time to understand someone’s ideal conditions of employment, looking at interests and strengths, rather than trusting the vocational assessments used inside the disability industrial complex that rely on outdated and spurious assumptions. The training I was to give would focus instead on working with local, smaller businesses to customize a position that meets the needs of both the employer and the worker with a disability.3 I use a framework from the pioneer of adult learning, Malcolm Knowles, who was at the forefront of arguing that adults cannot be taught as if they’re in elementary or high school. Knowles challenged the methodology of training adult workers. Rather than relying on the way universities and human resource departments used the framework of “pedagogy,” which means “leading children,” Knowles and others presented the notion of “andragogy,” literally meaning “leading man.” For example, adults must collaborate to learn; they need to understand how a new concept is different from their typical way of working; they cannot be coerced into learning (as in withholding rewards); and most importantly adults crave understanding why it is important to use the new methods they are being taught. So I began with a list of developments that had occurred and what that meant for learning a new set of skills to rise to the occasion.

I suppose I should have known better than to have referenced the Goodwill boycotts and the various DOJ inquiries into sheltered work, but these were professionals from all over the country who had paid money to receive the training I was delivering. I believed, and still do, that using Knowles’s adult learning principles to capture the interest of trainees is both effective and respectful, but almost immediately I noticed a woman in the back of the room with a sour look on her face. Now, that’s not uncommon, any trainer can tell you that; sometimes people are made to attend trainings, and there’s little you can do to assuage their bitterness at having to sit through something they don’t believe they need. Still, this person seemed to become more displeased as I went on. I covered changes in employment services for people with disabilities; I reviewed the Henry’s Turkey Service story (even today I am amazed that most people in the field do not know the story), how the men suffered, and mentioned that it was one of the few times that the USDOL had actually revoked a 14(c) subminimum-wage certificate—which should not be interpreted as the first time it had found serious abuses.

Later, I learned that the woman was an employee of NISH/Source America: one of the country’s largest players in the disability industrial complex was bothered that I was taking time to provide an analysis of current changes in a field rife with stagnant thought. Once I returned home, I was summoned to be on a call with the person I had offended. The call was brief, but I was told and asked to repeat that if I ever had the opportunity to train for NISH/SourceAmerica again, I would stick to the training and not offer my input on the legislative or advocacy efforts involved in overhauling or changing the way 14(c) subminimum wages are applied. That one instance is indicative of the way in which systems change is viewed inside the disability industrial complex and could be translated as: “Never amplify the problems, always rely on pity, and keep those who seek to make changes in line.”

For an organization that had vehemently objected to the Wiki tapes and the CNN story, it nonetheless wanted to control the narrative around a pivotal issue that it and its affiliate nonprofits found objectionable. Of course, it has also tried in recent years to reconsider how it applies its taxpayer-funded budget, but the customized-employment project that SourceAmerica operates is a tiny fraction of the annual budget of some $2.6 billion dollars. Window dressing? I don’t know for sure, but I can say without a doubt that in my experience in the corporate offices, they didn’t want me talking about the phase-out of 14(c) or the Goodwill boycotts.

It would be inaccurate, though, to paint SourceAmerica as the only part of the disability industrial complex that had concerns over changes to section 14(c). Beginning in 2011 I started traveling to Rhode Island to train provider agencies in the principles and implementation of customized-employment tools. For almost twelve years, the Centers for Medicare and Medicaid had funded Medicaid infrastructure grants, or MIGs. Authorized by the Ticket to Work and Work Incentives Improvement Act (the “Ticket Act”) of 1999 and administered by the Centers for Medicare and Medicaid Services (CMS), the Medicaid infrastructure grant (MIG) program afforded states the opportunity to develop infrastructures and initiatives that promoted, supported, and facilitated the competitive employment of people with disabilities. Specifically, the MIG program aimed to increase the number of people with disabilities participating in competitive employment by (1) developing Medicaid infrastructure by facilitating targeted improvements to a state’s Medicaid program and/or developing a comprehensive employment infrastructure that coordinates disparate state service delivery systems; (2) removing barriers to the employment of persons with disabilities by creating systemic change throughout the Medicaid program and coordinating with other programs to further remove barriers; and (3) developing infrastructure that offers sustainable and significant improvement in the ability of the system to provide adequate health coverage, personal assistance, and other supports for people with disabilities who are competitively employed.4 For the most part CMS mandated that MIG funding was not to be used for the direct provision of services, but rather to change the systems surrounding and supporting the employment of individuals with disabilities. States had to have the support and approval of their Medicaid agency, which meant some states had the funding for more than a decade, while others, like Georgia, only had the funding for eighteen months. There was a wide range of reasons why a state didn’t compete for funding, but much like expanding Medicaid coverage for citizens without insurance, the MIGs were sometimes seen as part of that expansion. From 2001 through 2011, over $450 million in MIG funding was awarded to forty-nine states plus the District of Columbia and the US Virgin Islands.5

This was an important initiative, one that—like so much inside the disability industrial complex—came with some successes and some failures to sustain the changes in the long term. Some states tried to impact their use of 14(c) subminimum wages but most focused on cross-agency collaboration, expanding their Medicaid buy-in program, which allows workers with disabilities to maintain their healthcare coverage when income and assets would otherwise make them ineligible for traditional Medicaid coverage. Many of the states used the MIG funds to offer more training and systematic change in the use of evidence-based employment services, which is how I found myself working in Rhode Island. Before the DOJ filed a lawsuit against the state of Rhode Island and the city of Providence, I was providing training to the agencies that still either operated sheltered workshops or had work activity centers. One participant in the training was a distinguished man with an expensive shirt and tie, sleeves rolled up. I liked him; he was attentive and thoughtful, but when I started going into the Goodwill boycotts and the Oregon lawsuit that seemed to be taking off, aimed directly at violations of the civil rights of workers with disabilities in the sheltered workshops, he became negative. He listened but moved in his seat. He had been a board member of a large agency and had recently taken on the role of an interim CEO as the remainder of the board did a national search for a replacement. He could no longer remain quiet and spoke up as I laid out the specifics of the potential changes to the system in Oregon. “That would never happen here, Doug,” he said, with a kind, knowing smile, as if I hadn’t yet grasped the politics in Rhode Island. “We’ve always had the ear of our elected officials in DC. They back what we do.” I nodded; I wasn’t there to debate or even spend a great deal of time on a lawsuit on the other side of the country. Still, he continued talking about their state trade organization, families of workers with disabilities whose adult children worked in a sheltered program earning subminimum wages for contract work performed for the prestigious jeweler Tiffany’s. Finally, I held up my hands and told him that perhaps he was right, I only meant to share with the group what was happening with the lawsuit in Oregon. Less than six months later, Rhode Island found itself agreeing to a consent decree with the Department of Justice. It found that the state and the city of Providence had essentially created a pipeline from its special-education programs and linked it with the adult provider agencies operating the sheltered workshops as a matter of course. Students’ civil rights were being violated. The expectation was a lifetime of pennies per hour. The consent decree with the DOJ in Rhode Island called for a ten-year agreement to fundamentally change the practices of subminimum wages.

Back in Oregon, a progressive provider affiliated with United Cerebral Palsy signed onto the lawsuit and aligned its focus and advocacy with that of the DOJ. Oregon was the perfect laboratory to bring a lawsuit questioning the state’s reliance on sheltered workshops and subminimum wages. It wasn’t that Oregon’s practices were more egregious than those of other states; in fact, Oregon was an early adopter of the use of supported employment and had formed one of the earliest initiatives, “Employment First,” a set of values, principles, and techniques aimed at shifting the focus of a state’s funding agencies away from sheltered work and day activity programs and toward spending those dollars on helping people find suitable, customized and supported employment scenarios for at least minimum wage. As in several states the DOJ has pursued in relation to civil-rights violations for citizens with disabilities, in Oregon there was a cadre of people, mostly professional bureaucrats with a bent toward advocacy, who welcomed the lawsuit, seeing it as a way to force the changes they were trying to bring about inside their own version of the national disability industrial complex. Molly Holsapple is one of those freedom fighters, working for almost half a century to assist people in leaving institutional settings for real homes, focusing on making sure that workers with disabilities had a choice in leaving a sheltered workshop for a real job with fair pay. She was instrumental in restructuring the funding streams to ensure that provider agencies were being paid based on outcomes. In other words, she was attempting to fundamentally change her little corner of the disability industrial complex. Holsapple worked to make sure that there were independent case manager professionals whose sole job was to assist people with disabilities in making informed choices regarding how, where, and when they spent their time, wresting the power away from the agencies, and putting the control in the hands of the person most reliant on the services. Personal budgets, where a person could see how much their provider agency was receiving to support them, were a cornerstone of Holsapple’s efforts. She had been designing the supported-employment system in Oregon long before the DOJ lawsuit began. In many ways she was a one-woman dynamo, trying to make change where there was resistance, but she relied on others too. “We kind of all grew up together. Folks at the state agencies, the trade organizations, all of them. We didn’t always agree and still don’t, but we could trust one another, and that’s so important in any wholesale systems change.”

The first amended complaint in the Oregon class-action lawsuit was filed in May 2012, brought by eight plaintiffs ranging in age from twenty-seven to fifty-one, with an average time spent in sheltered-workshop settings of nearly fifteen years: Paula Lane, Andres Paniagua, Elizabeth Harrah, Angela Kehler, Lori Roberston, Gretchen Cason, Zavier Kinville, and a young woman named Sparkle Green. United Cerebral Palsy of Oregon was also a plaintiff, and most importantly, all workers in the state’s sheltered workshops, referred to legally as “and all others similarly situated.” Governor Kitzhaber, and several Department of Human Services officials along with the administrator of the state’s vocational rehabilitation services, were named as defendants. In this way, the lawsuit was directly attached to two of the most significant funding sources, both configured with a blend of federal and state dollars: 1) long-term Home- and Community-Based Medicaid waivers; and 2) services delivered under the 1973 Rehabilitation Act, section 504, the basis of the DOJ action against Oregon related to violations and shortcomings related to Title II of the ADA. Title II applies to state and local government entities and protects qualified individuals with disabilities from discrimination on the basis of disability in services, programs, and activities delivered within their home state and community.6

The argument of the amended complaint is that informed choice and self-determination are for individuals to invoke, not providers, associations, PR staff, trade groups or lobbyists. The pertinent terms were defined:

A sheltered workshop is a segregated employment setting that employs people with disabilities or where people with disabilities work separately from others. Sheltered workshops are usually located in a large, institutional facility. Workers with disabilities in these settings have virtually no contact with their non-disabled peers, other than agency staff, and are typically paid sub-minimum wage. By contrast, integrated employment is a real job in a community-based business setting, where employees have an opportunity to work alongside non-disabled co-workers and earn at least minimum wage. Supported employment services are vocational training services that prepare and allow people with intellectual and developmental disabilities to participate in integrated employment.

The plaintiffs were represented by lawyers with the organization Disability Rights of Oregon, who argued that there is no reason for the incessant reliance on subminimum wages in sheltered workshops. Workers with disabilities are capable of work, each qualifies for access to Supported Employment services, and they have a desire to work in real jobs in the community. So, the question is, why haven’t they and others been afforded their rights under the ADA and the Rehabilitation Act of 1973? Oregon, through the DHS’s Medicaid waiver program and its state vocational rehabilitation program funds the Supported Employment service necessary for these workers to find and keep real jobs in the community. As the amended complaint noted:

DHS currently funds some supported employment services that permit some persons with intellectual and developmental disabilities to work in integrated employment settings. But thousands of other similarly situated individuals are unable to obtain such supports because DHS administers, manages, and funds an outdated employment service system that primarily relies upon segregated sheltered workshops. DHS and the other defendants have failed to timely develop and adequately fund supported employment services, despite their demonstrated knowledge of how to provide these services to support people in integrated employment, their acknowledgment of the benefits of integrated employment, and their repeated public commitment to policies designed to expand integrated employment.

As in most states in the country, the leaders, often appointed by governors, have other constituents with more access, more money, more at stake than workers earning subminimum wages.

Perhaps another lens from which to view a state’s obligations to use its tax dollars to fund evidence-based practices is the fiduciary relationship in which a beneficiary puts her faith in a body to perform its duties as a trustee. The issue arises from the significant confusion inside the disability industrial complex, the muddled relationship between the operators of the sheltered workshops and the workers with disabilities. If the latter are indeed workers, they can organize, negotiate, and enter into contracts, but if those same people are also viewed as clients, as in receiving some sort of treatment to ameliorate specific conditions, then that relationship is restricted by another, different set of values, more in line with the doctor/patient relationship. That consideration constitutes the framework of the argument in the Oregon case. It’s likely that the state is trying to balance these relationships. A simple way to determine who is at the front of the queue is to follow the money. If the state relies on the use of section 14(c) and sheltered workshops, and if it places supported-employment services lower on the list of priorities (with lesser funding for those services), it is knowingly denying workers with disabilities the ability to leave segregation.

The complaint argues: “The named plaintiffs and the class they seek to represent are harmed by their placement in segregated sheltered workshops. Without meaningful supported employment services, the named plaintiffs and the plaintiff class are stuck in long-term, dead-end, facility-based sheltered workshops that offer virtually no interaction with non-disabled peers, that do not provide any real pathway to integrated employment, and that provide compensation that is well below minimum wage.”

The plaintiffs’ injury was made clear: “Although each of these eight citizens is qualified and would prefer to work in an integrated setting, the plaintiffs remain unnecessarily segregated in sheltered workshops, as a result of Oregon’s Department of Human Services’ administration, management, and funding of its employment service system.”

The litigation sent ripples throughout the disability industrial complex. By 2011, New Jersey staff inside the same state agencies being sued in Oregon began tightening their expectations with providers, and the trade organizations and lobbyists in New Jersey responded. After administrators in the state pursued an “Employment First” approach, as lawyers were arguing for in Oregon, Governor Chris Christie reversed their actions, even though his administration had endorsed the concept of spending taxpayers’ funds on real jobs first. Administrators in the New Jersey Department of Human Services’ Division of Developmental Disabilities had tried to push provider agencies to wean their services away from a reliance on subminimum wages, but Christie became volatile and reversed their actions, moving the $7 million dollars from DHS to the state’s vocational rehabilitation program, whose state counterpart in the Oregon case was listed as a defendant.7

There’s a playbook that trade associations for provider agencies use, much like the one in the national press release from Goodwill. First, find families and their adult children with disabilities to showcase as being harmed by asking provider agencies to deliver on their taxpayer funding. The narrative is often steeped in stereotypes and revolves around the individual’s deficits rather than strengths. Second, get these families in front of their elected officials to stop whatever change is being proposed. It worked in New Jersey. Governor Christie could then claim that he had saved the sheltered workshops. Joseph Bender, the executive director of a sheltered workshop in New Jersey, the Occupational Training Center, stated, “They are grateful the Legislature saved their work. . . . It’s their choice to work, and that’s what we wanted to preserve, not have someone else dictate to them what was in their best interest.”8

Still, the ACCSES affiliate in New Jersey was concerned about the precendents from the cases in Oregon and Rhode Island. They had been able to control the congressional oversight commissions and hearings, but two DOJ lawsuits seemed to signal something new.