FEDERAL POLICY AS CATALYST, BARRIER, AND DUALITY
The federal approach to employment and disability, specifically toward those considered to have the most severe impact from disabilities, has shifted both in name and policy over the decades. In addition to the issues related to subminimum wages, lawmakers and regulators have struggled with everything from employer inducements to something known broadly as “work incentives,” a phrase geared toward helping workers with disabilities make choices about going to work or changing jobs.
On the employer side, it’s a story of lapsed legislation and what could be characterized as only mild incentives for businesses to hire workers with disabilities. The Work Opportunity Tax Credit (WOTC) is made available to employers to hire individuals from certain targeted groups that have consistently faced significant barriers to employment; two of those categories encompass workers with disabilities who have been earning subminimum wages. The US Department of Labor (USDOL) and the US Department of the Treasury, through the Internal Revenue Service, jointly administer the implementation of the WOTC program, which was passed by Congress in 1997. The WOTC provides for a tax credit if a worker is part of a vocational rehabilitation program with a state plan written under the guidelines of the Rehabilitation Act of 1973 as amended or if the applicant is a recipient of SSI, Supplemental Security Income.1 A person can qualify for SSI if she is blind or has a disability; the cash payment generally allows one to access Medicaid through his state agency. The employer of someone who falls into either of these two categories (part of a VR program or SSI recipient) can claim a tax credit that averages $2,400 per person, but the employer must make sure that the new hire is certified as part of the targeted group. Often, WOTC is not reauthorized consistently by Congress, and typically there are backlogs. There is not much incentive. In contrast to Germany, where companies are required to fill 5 percent of their workforce with workers with disabilities, the United States is woefully behind in policies related to the role that private business plays in employing people with disabilities, although Germany’s companies have been impacted by the Nazi eugenics of the past and often struggle to meet the mandate.2
For workers with disabilities receiving SSI and/or SSDI (Social Security Disability Insurance), Congress passed the Ticket to Work and Work Incentives Improvement Act (TWWIIA) of 1999, creating special rules that would incentivize going to work by reducing the risk of income loss, improving access to rehabilitation, and providing access to new entities, “employment networks,” whereby SSI and SSDI beneficiaries could assign their ticket to a new set of community rehabilitation providers and thereby create choice.
By the beginning of 2000, we had the Olmstead decision, the ADA, and incentives for employers to hire people with disabilities (WOTC), who now had their own new set of incentives to go to work in the form of TWWIIA. But in 2001 Congress once again held hearings on subminimum wages, and once again nothing changed in relation to the rules that applied to section 14(c) of the Fair Labor Standards Act. As introduced, House Resolution 881 would have made it impermissible for the secretary of labor to issue approval for any further payment of subminimum wages to workers whose only disability was low vision or blindness, generally referred to in advocacy circles as “turning off the pipeline.” Under H.R. 881 workers with all other types of disabilities, intellectual and developmental, including autism, cerebral palsy, and brain injuries, would have continued being paid subminimum wages. The bill was not acted upon, mostly due to previous lobbying efforts by the same players in the earlier debates who had wanted to keep subminimum wages legal and widespread. The federal point of view related to disability policy, especially concerning employment, was at odds with itself again, but even more so in 2001 since the Supreme Court, as well as the IRS, Social Security, and the USDOL itself, had weighed in.
As part of the remedy for a perpetually discombobulated set of policies, the federal government acted by creating a specific entity at the Department of Labor known as the Office of Disability Employment Policy (ODEP). It was authorized by Congress in the Department of Labor’s FY 2001 appropriation, an outgrowth of the Presidential Task Force on Employment of Adults with Disabilities and the President’s Committee on Employment of People with Disabilities. The USDOL’s press release strove to establish a forward-thinking set of values for the new entity, stating, “Recognizing the need for a national policy to ensure that people with disabilities are fully integrated into the 21st-century workforce, the Secretary of Labor delegated authority and assigned responsibility to the Assistant Secretary for Disability Employment Policy. ODEP is a sub-cabinet level policy agency in the Department of Labor.”3
One of the first priorities at the newly minted ODEP was related to workers with disabilities who had spent most of their adult lives in sheltered workshops and work activity centers laboring under subminimum wages. While the development and utilization of Supported Employment had been beneficial, the values and implementation principles associated with the service had been watered down once it moved from the demonstration phase funded by grants in the 1980s to common use. Funders at the state level had taken a powerful tool and embedded it inside bureaucracies, which are notoriously risk avoidant. The reauthorization of the Rehabilitation Act in 1992 had set the stage by using language that was to reinforce the notion of presumption of ability. Recognizing the systems that were designed to assist workers with all types of disabilities had become infected with a persistent belief in low expectations, the amendments instead insisted that vocational rehabilitation professionals assume that people with disabilities can work. While that seemed an odd declaration to have to make, especially to those who did not have much knowledge of the disability industrial complex, it was absolutely necessary. Supported Employment (SE) had been designed to find jobs in the community, not in sheltered programs, and was specifically recommended for persons with the most severe impact from disabilities who had not worked before and who needed intensive supports to do so. The SE approach was effective and replicable, but for many workers with disabilities stuck inside sheltered workshops, the service was not available to them. In the Shen and Snowden approximation regarding readiness for change, either the agency supporting the workers with disabilities were “resisters” and hadn’t started offering SE, or the agency fell into the category of “laggards,” slow to build skills and capacity and ramp up availability. In addition, the implementation of Supported Employment tended to focus on those job seekers with fewer impacts of disability, who may not have been the recipient of subminimum wages. ODEP’s leadership decided to challenge this issue head-on by robustly funding grants related to an emerging best practice known as “Customized Employment.” ODEP funded its first grants cycle that included multiyear initiatives to validate Customized Employment as an effective workplace practice for employing people with significant disabilities previously perceived as “not employable.”4
By 2001 I was working for an organization in Georgia called the Cobb and Douglas Community Services Boards (CSB). The state of Georgia created CSBs in 1994 as a public safety net for intellectual and developmental-disabilities services as well as programs for mental health and substance use. CSBs are public corporations and instruments of the state. I’d been hired to run a Supported Employment program that was connected to four sheltered workshops in the metro Atlanta area. My experience in Indiana had taught me how to write grants and seeing that I needed to infuse some much needed creativity into the nonprofit agency, I began looking through lists on grants.gov. The ODEP request for proposals (RFP) caught my eye because it focused on workers with disabilities who had been labeled unemployable and who had spent time in segregated programs paying subminimum wages—but even more intriguing, the funding was linked to the Olmstead Supreme Court decision regarding employment in a way that had not been fully realized. I buckled down and began writing.
Creating a response to a federal grant can be a maddening process. It takes the ability to imagine what the infusion of funding can do to assist with changing a specific system, often one that is resistive. Like most RFPs, only a limited number of grantees can be awarded and it’s competitive. There are collaborators to enlist, which includes stakeholders, the traditional systems already engaged (sometimes theoretically) in the pursuit of the same improvements. For instance, when the Clinton administration along with Congress acted to revamp the welfare program, the systems in states and localities would have to change as well. For the disability industrial complex, that meant Georgia’s vocational rehabilitation program and the state agency that Tommy Olmstead had led, now known as DBHDD. All states have these same programs, albeit named differently. In the end, I wrote for a grant from ODEP in 2001, 2002, and from its sister agency, the Employment and Training Administration (ETA) in 2003, securing funding each time. It was exciting to be on the forefront of bringing change to the organization I was employed by, but these were demonstration grants, meaning that the funding was to be used to investigate promising practices (such as Customized Employment) in order to determine how the practice, sometimes referred to as an “intervention,” could be taken to scale, developed in such a way to infuse those stakeholder agencies with better services that would help create employment opportunities for what the grant funding called “the focus population.” But for the people I’d met in the sheltered workshops, this meant I might find a little redemption, maybe even right some wrongs created by the four sheltered workshops, and of course, help unleash the talent and perseverance of workers who had had to endure subminimum wages and segregation.
The funding from these initiatives helped to hire new staff, provided for additional state-of-the-art training and technical assistance from subject matter experts, and just as important, allowed for a reason to convene. As a burgeoning community of practice (CoP) there were opportunities for open discussion, to gather data that could be analyzed and to make changes in the focus systems. These were five-year grants that offered occasions to attend nationwide convenings in Washington, DC, where the other grantees (from over twenty states) shared the barriers they had encountered, as well as the elements of the demonstration projects that were working well and could be incorporated into the work of other states.
For the first time since the inception of the FLSA and section 14(c), the nation had a lead agency taking on the awesome task of trying to unite other vested federal agencies to create a more cohesive approach to employment and disability policy. For ODEP’s part, it didn’t sit idle after Congress created it in 2001. Year after year new plans were developed, and the staff at ODEP kept at it, putting out new grant opportunities and taking its convening role seriously. In a flurry of work, the first decade of 2000 saw the creation and launch of DisabilityInfo.gov, the first federal interagency website for disability-related information and resources. ODEP collaborated with USDOL’s Employment and Training Administration (ETA) and the Social Security Administration to launch the Disability Program Navigator initiative to increase the capacity of the general workforce development system to serve people with disabilities so that the endless referrals from one program to another would cease.5 There were grants to help identify and reproduce best-practice approaches to supporting youth with disabilities in working during school to avoid segregation and subminimum wages, resulting in a set of principles known now as “Work Early, Work Often.”6
By 2003 ODEP had created a national project via a cooperative agreement to implement Training and Technical Assistance to Providers (T-TAP), a national effort to increase the capacity of community rehabilitation programs and other community-based service providers to promote integrated, competitive employment for people with disabilities through customized employment strategies and forgoing time spent in subminimum-wage sheltered workshops and work activity centers. T-TAP ran from 2002 to 2007 and resulted in several dissemination products, including a mentor guide that was developed based on the experiences of the T-TAP mentors and project staff as they provided technical assistance and training to provider agencies that applied for and were awarded assistance from ODEP. The purpose was to provide information to community rehabilitation providers about organizational change designed to improve employment outcomes. The T-TAP project was a collaborative effort between ODEP, Virginia Commonwealth University, and the Institute for Community Inclusion at the University of Massachusetts–Boston. As the new sub-agency at the USDOL, ODEP was trying to make a dent in the foregone conclusion by the disability industrial complex that subminimum wages and segregation were the best options for workers with intellectual and developmental disabilities.
Back in suburban Atlanta the grant work at the Cobb and Douglas CSB went on as well. By 2003 it seemed a direct contradiction of the grant funding to keep the four sheltered workshops and the associated 14(c) certificates. Nancy Brooks-Lane was the director and responsible for administering large budgets and programs that supported hundreds of people and their families. Brooks-Lane was trained as a psychologist but had also spent time in the civil-rights movement in Mississippi. She was perfectly suited to change how things had been done, to spot within the system the points where people were not being heard, treated fairly, or provided opportunities for growth. As people with disabilities in the programs received Customized and Supported Employment services and left the sheltered workshops for community jobs, the decision to take on the arduous task of ceasing to pay subminimum wages was complex. It meant angry parents, confused funders, disgruntled staff, and impatient board members who preferred to not be bothered with large-scale systems change. Yet, she persisted. The special 14(c) certificates were not renewed, which meant the four sheltered workshops would need to reevaluate their mission, including how to arrange programmatic supports moving forward. Brooks-Lane and her colleagues ordered several copies of the book Closing the Shop. It would be the first in many books, manuals, and reports that would be incorporated into the systems change, but one of the internal staff who did not believe that subminimum wages should have been ceased, alerted family members that a case of Closing the Shop had been delivered.
Systems change in any type of industry is difficult; people resist, hunker down, and take things personally, but when that change is connected to a specific worldview—for instance, where and how people with the most significant disabilities should spend their days—the resistance is amplified.7 For the next eighteen months Brooks-Lane worked with families and board members, often in the evenings and on weekends. The influx of the grant funds helped, and it was decided that dissemination of the stories of workers with disabilities leaving the sheltered workshop would support the sustained momentum needed for further change. The connections with the federal grant partners at ODEP as well as Georgia’s Council on Developmental Disabilities helped; several profiles were written and photos shared of the stories.8
Storytelling became a critical tool in communicating the changes, and with those successes came additional opportunities for more grant applications. Brooks-Lane was asked to serve as a mentor on the ODEP project (T-TAP) that assisted other provider agencies in the country to implement systems change as well. In 2007 a research article was authored by Brooks-Lane and others (including myself) for publication in the Journal of Vocational Rehabilitation. The editor-in-chief at the journal was Dr. Paul Wehman, who had been such an early influence on the idea of using Supported Employment services to help workers with disabilities leave subminimum wages for jobs of their choosing in the community, working alongside nondisabled coworkers and making the same pay. Wehman had argued for the Rehabilitation Act as amended in 1992, “These Amendments pull together the best of what we know about how to assist people with disabilities and their families. The rest is up to us.” As editor-in-chief at JVR, Wehman endeavored to keep that spirit alive. Our article, “A Revolution in the Employment Process of Individuals with Disabilities: Customized Employment as the Catalyst for System Change,” was published in 2008, and the title explains how our nonprofit rehabilitation agency strove to offer more real employment to people who had been traditionally supported in sheltered workshops or day programs. By using case studies and qualitative data, the path to real and effective organizational improvement in the area of customized employment outcomes was explored. Seven points of analysis in the systematic organizational development emerged from the data review: (1) staff development; (2) community partnerships and diversified funding; (3) sustainability; (4) a shift in managerial approaches and supervision; (5) changes in human resource processes; and (6) expanding customized employment to diverse populations, i.e., those leaving justice systems, foster youth, and welfare-to-work recipients. The examination illustrated the need for best-practice staff training, person-centered and community-based vocational assessments, customer-directed personal budgets, flexible funding, a focus on evidence-based customized employment outcomes as performance indicators, values-based human-resource processes, and executive leadership involvement with staff and customers to break down barriers and achieve organizational momentum for outcome-driven change.9
Customized Employment (CE) was an emerging best practice for people who had not been given the opportunity to leave the arena of subminimum wages. In 2007 CE was defined in the Federal Register10 as: “Individualizing the relationship between job seekers and employers in ways that meet the needs of both. It is based on an individualized determination of the strengths, requirements, and interests of a person and matching those to the needs of the employer.” Customization was not a new concept; all job descriptions are created by a business to address unmet needs. All job seekers, whether subject to a disability or not, routinely consider the work environment, job characteristics, and other conditions that they prefer in a job. Customized employment starts this process with up-front negotiations between the job seeker and the employer. The methodologies of customizing a job include a process called “job carving,” which can be thought of as creating a job from one or more but not all of the tasks of the original job; “job negotiation,” as in creating a new job from various tasks from parts of several jobs; “job creation,” which is creating a new job based on unmet workplace needs; “job sharing,” which consists of two or more people sharing the same job and performing different tasks at different times; and “self-employment,” which includes the use of a micro enterprise. In an effort to address the Olmstead decision, the project in Cobb and Douglas Counties, Georgia, focused on moving twenty persons per year from the day program into customized employment (the sub-minimum wage 14(c) certificates were not renewed). The project was successful in substantially exceeding these goals. Project Exceed served 198 individuals through accessing Individualized Accounts (IA). These dollars were set up as funds specific to a person’s employment goals. The IA dollars helped purchase equipment (i.e., a digital embroidery machine), tools (i.e., two hydraulic pet grooming tables), and other necessary items that could be leveraged in negotiation with an employer.11 One technique used in Customized Employment is to capitalize the job seeker with disabilities with equipment and tools that they own and use to perform job tasks; this process is known as “resource ownership.” It can be a powerful way to assist workers with disabilities who have been in sheltered workshops and work activity centers to compete in the marketplace, and it helps a small business benefit from capital resources attached to a specific job seeker.12
The worker with the disability retains ownership of the resources; if they decide to leave for another job, the resources go with them. This can also offset in some instances any additional supervision or accommodations related to productivity that the employer might make. Of the persons served, 105 individuals were female, 93 were male. The predominant age range for persons served was 18–29. However, the age range extended through the full working-age population, including twenty-one individuals who were age fifty and over, meaning that these job seekers had spent a great deal of their time in segregated programs earning subminimum wages—or in other types of day programs aimed at training prevocational skills, another phrase in human-service speak that means “getting ready to work” and that rarely ends up producing such an outcome. It is a term so fraught with ambiguity in the disability industrial complex that the Centers for Medicare and Medicaid (through its guidance to state agencies tasked with implementing the Home- and Community-Based waivers related to employment) had to reiterate that prevocational skills could not continue for years and years. It’s not uncommon to see workers with disabilities who have plans for ten years or more that involve billing related to pre-vocational services. One might question how an organization can claim to provide vocational rehabilitation that takes decades to achieve or whether the services are lacking in effectiveness to the degree that perhaps it is the very services themselves that are the problem. Perhaps it behooves a provider agency to keep people with disabilities in prevocational services so it can continue to bill, rather than supporting a person to become employed. The guidance from CMS states, “Segregated pre-vocational or habilitative programs that have a poor track record of placing people in competitive integrated employment may not be considered to provide adequate opportunities.”13 In other words, the nonprofits that purport to be “readying” people for employment outside the sheltered workshop or work activity center cannot just simply keep billing Medicaid year after year under the auspices of “prevocational” services if there’s never any intention of transitioning services for the person with a disability to “postvocational,” which, to the taxpayer who doesn’t know the disability industrial complex’s lingo, means—a job!
The five-year grant in Cobb and Douglas Counties helped workers with disabilities leave these types of settings. The predominant, primary disabilities of the persons served were mental illness (77) and developmental disability (85). By the project’s conclusion a total of 141 project participants had achieved employment outcomes. The average hourly earnings in 2007 wages was just over $8 per hour, and the average hours worked per week was 22. Self-employment earnings fluctuated more and were difficult to quantify in an hourly format, but on the average self-employed participants earned higher wages for their services. For instance, a person with his own computer repair business billed $40 per hour. Project participants worked in a variety of jobs, such as car detailer, pet groomer, receptionist, teacher’s assistant, data entry technician, childcare worker, bookstore employee, hair salon personnel, chef, embroiderer, lab technician, arcade attendant, vending machine owner-operator, and home inspector and fields, such as catering, pest extermination, flea market, sales, computer technology, motivational speaking, dry cleaning, jewelry sales, and lawn care, a stark contrast to what the disability industrial complex usually provided, which was only fast-food and grocery bagging jobs.
The grant initiative was a major undertaking for an agency that had been acutely immersed and invested in delivering the outdated subminimum-wage services that kept people perpetually lacking in work skills. Because the agency was part of Georgia state government, it also took on an early pledge to consider hiring workers with disabilities when posting job vacancies, which ran the gamut from mail room clerks, maintenance positions, data entry jobs, and transportation positions, as well as the traditional human-service jobs. This idea of government’s putting its proverbial money where its mouth is would later be more formally adopted by the leadership at the Office of Disability Employment Policy at the US Department of Labor and given the moniker State Government as a Model Employer. The intention was that in order to be good stewards of both financing and federal legal mandates, both the federal and state governments should become role models, making accommodations and utilizing the same customized-employment techniques that were being used with local employers.14
By 2008 the programs in Cobb and Douglas Counties were considered leaders in the country for their efforts to systematically change, with intense efforts to build capacity to support workers with disabilities in real jobs in the community. There was still resistance, however, and daily there were discussions with the budget office about how the good work done under the grant initiatives would continue after the funding sunset. It wasn’t a problem with a good answer. All over the country states grappled with how to increase the incentive so that sheltered workshops would opt for providing Customized and Supported Employment in the community, but the rates from state Medicaid and vocational rehabilitation agencies varied widely.15 This funding discrepancy and the notion that nonprofit programs like the sheltered workshops and work activity centers could have more predictable revenue by keeping workers with disabilities in the buildings doing contract work, created confusion. While some states had made strides in realigning their funding, the result wasn’t easily laid over another state’s dissimilar structure. It didn’t take a historian to see that the roots from the problems with section 14 (c) dating back to 1938 were bringing forth new iterations of the same old model of segregation, with more trade associations, an increase in providers of disability services deeply committed to organizing their programs around subminimum wages, and families buying into the low expectations that these groups held of people with disabilities and work.
In the end, while the grant initiatives helped 141 workers with disabilities in obtaining employment, they did not create long-term change, as in transforming the agency away from segregated day services. The 14(c) subminimum wage certificates were gone, but like so many other organizations around the country, the future didn’t hold more employment for others. The systems related to disability and rehabilitation primarily charged with funding services, and the inherent nature of the agency itself to routinely rely mostly on state funds returned to the old ways of doing business. The number of people in facility-based and nonwork services grew and has continued to do so nationwide, suggesting that employment services remain an add-on, rather than a systemic change.16
This trend of seeding demonstration grants to help the sheltered workshops and activity centers switch over to providing supports for real jobs for fair wages in the community can be seen in many of the suggested fixes at the federal level. While there are some examples of this change happening, it’s rare, and more often, as in the Cobb and Douglas CSB example, it occurs only for a brief time before resorting to previous ways of organizing services. This tendency is deeply ingrained in leadership and its vision—or lack—for change and innovation. In 2009 Dr. Katy Inge and others at Virginia Commonwealth University surveyed disability and employment agencies operating in the United States and found that nearly 90 percent of provider administrators (CEOs, CFOs) reported that they and their boards of directors felt that facility-based programs were indispensable for workers with disabilities and only 47 percent had a formal plan to expand integrated employment.17 To make this point clear, roughly half the leaders from nonprofits receiving federal and state dollars to help people with disabilities get jobs reported having any type of formalized strategic planning to actually perform the tasks they are required to do by taking the funding from vocational rehabilitation and Medicaid. Imagine if these were CEOs of healthcare providers being surveyed, and they responded by stating that they had no definite plans to deliver primary-care services, to provide prevention services, or to pursue continuous quality improvement.
By 2010 I had left the machinations of the community rehabilitation provider system. I had worked inside the system for more than twenty years to try to make change, but now I felt that I could do more by training and providing assistance to states and nonprofits who wanted to truly help workers with disabilities leave subminimum wages. That would bring me to New Mexico, Rhode Island, Virginia, California, South Dakota, Maine, Utah, and other states. I took a job inside the DD network at the University of Georgia’s Institute on Human Development and Disability, one of the nation’s UCEDDs, and helped with training and implementing evidence-based employment practices mandated by Georgia’s DOJ consent decree. During the decade of the 2010s, the nation had additional opportunities to overturn 14(c) and subminimum wages, and the battle intensified, resulting in the release of Wiki tapes to the public that highlighted the disability industrial complex and its scheming behind closed doors. NBC news coverage by Harry Smith investigated Goodwill’s practice of relying on subminimum wages and the associated boycotts, but the most heart-wrenching stories of exploitation under 14(c) started in Texas and ended in a dilapidated bunkhouse in Iowa where law-abiding, legal citizens of the United States were treated as criminals and indentured servants because they had been born with intellectual disabilities and because it was legal to pay them differently from other men who worked in the processing plant doing the same work.