Entitlement, Personal Responsibility and the "Lost Battalion" of Workers with Disabilities

Entitlement, Personal Responsibility, and the “Lost Battalion” of Workers with Disabilities: A Story of Unintended Consequences.

By Carl R. Ochsner, MS

I can recall a few years back, when I served on the Workforce Investment Board of Humboldt County. The year was 1997, and federal welfare reform had just been passed by the U.S. Congress; displacing the older Aid to Families with Dependent Children (AFDC) with the newer Temporary Aid to Needy Families (TANF) model. A representative from our local California State Department of Social Services office was on our WIB, and this particular morning, he was explaining a triage process that his agency was using to determine work or work-study requirements. The procedure that was outlined involved making a determination of whether or not the applicant was significantly disabled and, if so, excusing that person from the mandate to either seek work or participate in training/education that would lead to work.

This is rather odd, I thought. As the Executive Director of a vocational training program that provided job training and employment to persons with developmental and physical disabilities, I was flabbergasted by the idea that anyone could be too disabled to work. Our whole philosophy was built around the idea that work is the normal daily activity of most non-disabled adults, and so it should be available to, and even required of, individuals with disabilities. Having provided adaptive devices and specialized work stations to countless individuals over the years, I couldn’t imagine drawing an arbitrary line separating those who were allowed to work from those for whom crafts classes, walks in the park, or afternoons spent in front of the television would suffice. I felt then, and still feel today, that full inclusion means participating in the normal activities of daily life and having the dignity of being expected to meet the obligations associated with self-reliance and self-sufficiency to the greatest extent possible. Essentially, I felt that when we tell a person with a disability that they ought to step aside and take it easy while other folks go to work, we are communicating that they are not only different from regular citizens, but that their effort and contribution are not needed; that the rest of us can build the commonwealth without their help. Conversely, when we voice the expectation that all hands are required, we communicate a powerful message of inclusion and respect.

The recent proliferation of work and non-work options for adults with disabilities, as well as the emphasis on client-centered programs, causes us to look back to the roots of vocational services and the sheltered workshop movement. We are inspired to make a fresh examination of the reasons why the vocational service centers were created in the first place, and to attempt to discern the original intent of the founding families and community members to whom our clients and we owe so much.

When the early work centers first opened their doors over sixty years ago, governmental funding was nearly non-existent. The founding citizens relied on fundraising as well as donated facilities, equipment, and supplies in order to survive. For the earliest program participants, there was very little choice; services were certainly not built around their individual needs. That would come much later, with greater funding and the arrival of educated professionals in to positions of leadership within both the programs themselves and the organizations that supported them.

THE OBLIGATION TO CONTRIBUTE

A key portion of the plan for viability of those early work centers was the participation of the clients themselves. The covenant, although unwritten, was nevertheless fairly clear: the community would do what it could to raise support and secure public funding, but only to the extent necessary to supplement what the sheltered employees, through their commercial endeavors, could create. Thus, each work center was to find various production contracts or develop marketable products that could serve to bring in a significant portion of the revenue needed for survival. Inherent in this concept was the idea that program participants weren’t merely there for their own benefit, but rather to support and strengthen the very services from which they benefited. To the extent that we have been successful in carrying this notion in to the modern day program environment, it provides one of the most powerful motivators for clients to continue to want to be part of a center-based or group supported work program.

In those years, nobody questioned the idea that the workers with disabilities were there to benefit the “business” where they worked, as well as themselves. Indeed, this arrangement would simply parallel the expectations made on all non-disabled adults; that they would work each day to provide for their own financial support and would most likely do this by contributing their labor to some sort of ongoing enterprise. It was widely understood that every citizen had an obligation to make a material contribution to the community and general economy that offered to him his shelter, sustenance, and support.

SUPPORTED EMPLOYMENT AND ENTITLEMENT

In California, supported employment arrived with the passage of AB 3018 in 1985. It opened the doors of the sheltered workshop and allowed a great number of its more capable program participants to move, as individuals and as part of a group, in to jobs in local industry, restaurants, and retail sites. The benefits were many, especially with regard to being included in non-disabled work teams and thereby having access to more normalized behavioral models. However, along with the debate over sheltered worksite versus integrated worksite came a new emphasis on client choice; including, apparently, the choice of disregarding work altogether! High capability individuals, who decided that their new integrated job was not suitable to them, or who ceased being employed for other reasons, did not automatically return to their local work center. Nor did they always become re-employed in a new community-based business. Instead, many drifted in to an emerging array of non-work programs or, quite frequently, in to no particular program at all. As the years went by they were joined by legions of new high school graduates who were steered away from traditional work programs. As a result, the number of developmentally disabled adults with mild or moderate levels of cognitive impairment, but who were nevertheless without work, appeared to grow. Local university research projects could be very valuable in helping us to understand the nature, extent, and possible causes of this phenomenon.

THE LOST BATTALION

Here in Butte County, California, the ranks of developmentally disabled adults who are not employed of their own volition have grown substantially over the last decade and a half. Our local funding agency estimates that anywhere between fifty and one hundred fairly capable individuals (people we used to refer to as borderline, mildly or moderately retarded) are living in various areas of the county and spending their days in front of the television set, hanging out at the park, or wandering through shopping and downtown areas of our three major population centers. Generally content to avoid remunerative or otherwise constructive activities, and receiving no consistent pressure from parents, careproviders, or social workers, these individuals enjoy the safety net that our taxpayers have provided (shelter, medical care, and a small living stipend) without feeling any particular need to reciprocate.

In one especially poignant case, when a young man was asked by his publically-funded case worker why he was no longer engaged in his job at a local restaurant, he replied that he had “retired” and was no longer interested in work. This local developmentally disabled citizen is just twenty-nine years old!

A quick review of ideological shifts over the past three decades will provide us with clues about why the “lost battalion” got lost. As Wolf Wolfensberger’s emphasis on normalization became supplanted by client-centered programming in the 1980’s and 1990’s, work began to lose its position of central and primary importance. The new mantra of consumer choice held that the service recipient; not social workers, legislators, or taxpayers, would now guide our vocational rehabilitation efforts. Work became just another choice among many. At the same time, a new generation of agency personnel, drawn from academic, recreational, and social service backgrounds (not from industry, as their forbearers had been) brought a different perspective in to the field. Rather than seeing a simple daily job as an ennobling and normalizing factor in the life of an adult with a disability, they might prefer to view such activity as mind-numbing and repetitious drudgery. Obviously, given a new emphasis on personal choice, and mixed messages from professionals about the value and necessity of work, it should not be surprising that so many of our more capable individuals have made the decision to live their lives without benefit of employment; especially when, as previously stated, their essential livelihoods are not affected.

The costs and negative outcomes of the situation that we have created are several. First, of course, is the deteriorated quality of life and general purposelessness that surrounds many of our more talented and capable developmentally disabled citizens. Flush with personal electronics and access to media, they nevertheless often live lives apart from the rest of us. Ironically, our strong past desire to help these people to achieve liberation from sheltered workshops and become integrated with general society has often left them, after two or three aborted attempts at community employment, marginalized and sitting on the sidelines.

A second concern is the loss to our local and general economy. The collective contribution that these individuals could be making to the total value of goods and services produced is significant. To compound the loss, the paychecks that they are no longer receiving are therefore missing from our local economy. As a result, revenue inflows to area restaurants, recreational outlets, and retail stores are less than optimal.

A third impact, perhaps more nefarious than the above concerns, is the arguable misappropriation of public funds. In an era when state governments are at risk of insolvency, the federal government is running huge deficits, and the Social Security System is using up resources faster than they are being replaced, it is almost shameful that a large group of local citizens who could be contributing to their own self-sufficiency are not doing so. There is a distinct possibility that at least some of these individuals could eventually earn enough to reduce their dependence on public funds and medical benefits. Such an outcome could, of course, free up precious resources for others whose levels of disability are more profound and complex.

What Shall We Do?

The recent advent of “Employment First” initiatives in various parts of the nation indicate a renewed desire to focus our scarce public resources on the priority of work as the central adult daily activity. We can hope that such renewed emphasis will call in to question the great array of funded “choices” that are now available to our most capable service recipients.

We can also begin the process of linking at least some benefits and “extras” to participation in paid work. This could result in a system where the incentive structure is slanted toward economic activity, as it is in the non-disabled portion of society. In line with this, some of our least-impaired individuals could be re-directed from the disability services system to the regular social service system. Here in California, that would mean the obligation to seek and accept work, or participate in work preparation, as a condition for continued public support. At minimum, we need to bring some consistency to the concept of disability as it affects our expectation that the individual be employed and at least partially self-sufficient.

THE FORGOTTEN STAKEHOLDER

In order to bring necessary new thinking and a clearer sense of priorities to our decision making, it is time to include the “forgotten stakeholder” in our deliberations; the ordinary citizen who has the funds deducted from his/her paycheck each week that allow the public sector to flourish. While our local boards and advisory committees typically contain representatives drawn from funding agencies, area boards, local care homes, agency staff, and consumers, they seldom or never contain taxpayers themselves; who are, after all, the ultimate funding source. Thus, we too often tend to assume that the public monies that are made available to us through the Department of Developmental Services are the property of the service-recipients when, in reality, these funds are restricted public assets, and ought to be used only for purposes envisioned by the original legislation and intended by the taxpayers. Therefore, our ability to prioritize services and related use of resources can only be enhanced by adding one or more members of the general public to our advisory groups and local funding agency boards of directors.

Carl Ochsner has served as the Executive Director of Work Training Center since July of 2000. Prior to his appointment he was employed in various direct service, management, and administrative positions in six other agencies located in four separate regions of California. He is a Past President of the California Disability Services Association.

Carl holds a Master’s Degree in Rehabilitation Administration from the University of San Francisco, a B.A. in Behavioral Science from Cal Poly Pomona, and a clear adult education teaching credential in vocational subjects. He can be reached at carlo@ewtc.org.

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