Supported employment: working ideals.
Shrinking Boundaries and Promoting Choice
Two fundamental, interwoven trends lie at the heart of the progress over the last two decades. The first is a change in perception and attitude, characterized by reduced and less rigid boundaries between the world of people with disabilities and the world of everyone else. Before deinstitutionalization, the border between these worlds was sharply delineated. People with severe disabilities were viewed as abnormal rather than normal, and their residential asylums bore no resemblance to places where nondisabled people lived. Today, these boundaries are significantly less immutable, thanks to the rise of residences and services in the community. Supported employment programs help this cause by blurring the boundaries between disable and nondisabled people in the workplace.
The second trend emphasizes choice and flexibility for people with disabilities. While still an elusive goal in practical terms, the conviction that individuals themselves should have choice concerning what services they receive has become central to ideas about program development. Too often, options continue to be presented in paternalistic terms. The implicit message is that individuals with disabilities are not fully capable of bearing responsibility. Service providers need to continue moving away from infantilizing clients and toward insisting on a genuine involvement of people with disabilities in decisions about which services fit their needs. In order to offer real choice, the system of services must be flexible enough to accommodate a wide variety of options and creative enough to serve people with a broad range of disabilities. There has been progress in this area, but we have a long way to go.
Optimism that both these trends--inclusions and self-determination--will continue is not unwarranted. In fact, it seems possible that past changes will pale in comparison to shifts to come by the end of this century. And although the pace of the change remains in doubt, a question Tom Bellany raised some years ago in his seminal work, Supported Employment, has now been answered: It is no longer too early to tell if supported employment, with its emphasis on flexibility and choice, will be a mere fad or whether it will constitute fundamental change. Supported employment, and its working ideals, have taken root all around the country.
Keeping Services Headed in the Right Direction
The breaking down of unnecessary, often counterproductive, boundaries that permeate the system needs to continue. Today, for example, there are rigid distinctions between employers, service recipients, and service providers. Their respective roles need to be woven together. Some employers have already become sufficiently convinced of the benefits of supported employment to find ways to train and support workers with disabilities just as they train and support workers without disabilities--using corporate resources. The training of workers with disabilities becomes, in the way, an activity incorporated within the basic business operations of companies. Companies are also learning to harness the natural inclination of established workers to aid in the seasoning of all new employees, a process that in many ways exemplifies the desired interaction between job coach and trainee. Some companies are capitalizing on this inante organizational capacity to carry out training, supplemented by their own job coaches. Once an employer has accepted the utility of hiring workers with disabilities, it is not as big as leap as it might seem to go from using a supported employment provider to conducting the necessary training in-house with a company's own employees.
How would such change affect the role of the rehabilitation agency? Obviously, its training componet could be substantially reduced. It is possible to envision compact, agile, streamlined agencies in the not very distant future, capable of providing concentrated, immediate expertise to employers on a consulting basis. They would be something like present Employment Assistance Programs (EAP's) in offering short-term consultation and intervention to help people get and keep jobs. They would not be nearly as elaborate as they are now. Their agenda could be relatively limited. Less might turn out to be more.
Tackling Residential Reform
Ideally, the rehabilitation agency's move into an advisory role would not be limited to employment issues. Rehabilitation agencies might increasingly take on the task of facilitating a parallel movement toward self-sufficiency and integration in the lives of people with disabilities outside the workplace. In the years since the mid-seventies, many states have seen community-based group homes substantially replace institutional living. For many who inhabit them, these community residences could serve as stepping stones to an apartment and greater self-sufficiency, but the special support that residents need to make a sucessful transition to more indepedent living is not at hand. Rehabilitation agencies are well-equipped and well-positioned to press for and support change in the total lifestyles of clients who seek their help. The principles that presently underlie shifts of people from segregated day service programs to mainstream work could guide their movement from group homes to greater independence in supervised apartments.
Over the past 20 years or so, the way government spends money on people with servre disabilities has changed dramatically; and , on the face of it, the changes also look thorough and comprehensive, integratinjg reforms in patterns of residential care with shifts, like supported employment, in the aims of day services. After all, places like New York State's notorious Willowbrook have been closed, its more than 5,000 former residents scattered to group homes around the neighborhoods of New York City. Over the same period, programs like Vera's Job Path, a transitional and supported employment project for people with the developmental disabilities, have helped thousands of people cross over from day centers and sheltered workshsips to real jobs in the conventional labor market.
In New York State alone, hundreds of group homes now house thousands of adults with severe disabilities who used to live at willowbrook or places like it. By and large, these homes are clean, well-supervised, nice places to spend time in. Mostly run by voluntary agencies, these homes provide a life that is about as diffe2rent from ward life in a state institution as it can get. Treatment plans, client goals, and progress notes underscore the noncustodial nature of work at hand. But almost no one asks, in a fundamental and systematic way, if any of the people with disabilities who have crossed the gap from institutions to group homes could take the next step and establish themselves in, say, an apartment in a neighborhood and with roommates (or not) or their own choice. It is possible that this question cannot get officially posed until a plausible program--or array of supports--comes into view that can help people cross the gap between congregate living and a home that is more their own. People who have puzzled out how to make supported employment work have a headstart on inventing that new housing service.
Trading in the Continuum
For progress to continue, boundaries must be reduced precisely where maximum fluidity was originally envisioned--along the institution/day treatment/workshop/employment continuu. The present system was designed on a flow-through model, with the idea that people who are disabled would, wherever possible, progress from one level to the next, all the while gaining skills and self-sufficiency. In practical terms, this is almost wholly unrealized. For many people with disabilties, these theoretical steps along a continuum have led to a dead end, with little hope of their moving out of them. In New York State, less than 1 percent of the over 14,000 people in day treatment have "graduated" to workshops or competitive employment. Workshops, furthermore, have tended to focus on intramural productivity, rather than training for full-time competitive employment on the outsdide. Even supported employment programs have not carried out the mission they originally adopted: rather than providing services to the most severely disabled people, usually those who are now either targeted for day treatment or already there, these programs have dealt predominately with more capable people whose employment and training needs might more readily be fitted to a transitional employment or direct placement service.
Still, there has been a lot of progress. Although no one seems to have a practical plan to help clients who are in day treatment move along the continuum, funds specifically earmarked for moving people with severe disabilities out of workshops are now more readily available. These initiatives havce heightened the day-to-day sensitivity of program managers to their clients' employment potential. And these shifts in attitude have led many facilities to implement their own supported work components. But it is still too often the prevailing belief within these programs that the majority of their enrollees are unsuitable for outside employment. As evidence to the contrary mounts, however, this attitudinal barrier to widespred adoption of supported employment techniques will shrink.
Over time, supported employment ought to become an outcome in the first case, a place where people begin. It is notoriously difficult to move people from one place, where they are reasonably comfortable, to another place, fraught with unknowns. Yet, that is a central feature of the continuum concept.
Overcoming Obstacles: Money and Management
Boundaries persist, in no small measure, because public funding has a hard time keeping up with the elastic needs of people; too often, individual needs are batch-processed by service systems unwilling to be imagniative about idiosyncratic solutions. It is still almost universally the case that funding sources tend not to reflect the wide variety of needs within the system. Instead, they maintain extremely specific eligibility requirements which suggest that service needs are open to neat sorting out into one of a handful of program types. Such boundaries can easily lead to decisions that people with disabilties are ineligible for this or that service, creating widespread potential for people to fall through cracks and receives services that are poorly suited to their needs or, worse, no services at all.
Supported employment seeks to turn conventional program development upside down, putting client needs and aspirations first and making program design a consequence of that assessment. In theory, there are as many choices within a supported employment program as there are clients. The old model of day service had two or three program types; the client was fitted into the one that provided the closest mesh between individual needs and the capacity of a given service to respond to those needs. In supported employment, the client receives whatever level of service he or she requires. This eliminates mismathces created by best efforts to meet needs within the structure of preexisting service models like sheltered workshops or day treatment programs.
The theory of customized services still meets an unhappy end in day-to-day terms. For example, some funding sources, like present incarnations of Federal Job Training Partnership Act authorizations, continue to emphasize fast work, rapid-fire placements, aqnd time-limited support. Such a model neglects the essence of supported employment, with its concept of individually tailored supports whose intensity and duration are grounded in an assessment of whatever help an individual client needs to get and keep a job in the regular workplace.
Another barrier to the widespread implementation of supported employment is that its funding sources are not as stable as its primary alternatives. For example, the fact that Medicaid is a reliable and steady source of funds ofr day treatment attendees acts as a disincentive to movement out of these programs. Fuonding sources such as Medicaid--however essential to the widespread development of community-based programs for people with the deepest disabilities--have tilted the system toward intensive service models which can be unnecessarily expensive and much less likely to foster self-sufficiency than community-based employment modles. Some of the best thinking about future financing has occurred within discusions about what form a national Medicaid waiver program ought to take. In a state like New York, where an addiction to Medicaid has had more than a decade to get a hold on state officials and service providers alike, relief for the use of these dollars for employment services is essential.
Keeping an Eye on the Prize
It is precisely because it is so boundary-free, flexible, and rooted in choice that supported employment needs to continue growing as an option for people with disabilties; and, although the building of consensus around supported employment is already well underway, the essence of the concept makes this process difficult. What is best about the supported employment design--its attempt to be malleable enough to meet a wide variety of individual needs--is exactly what makes it difficult to describe well. Its techniques defy pigeon-holing, and are thus resistant to conventional bureaucratic efforts to define them. In many ways, the program model is still being invented. No matter what anyone says, all the forms its techniques will ultimately take are not yet known. This is largely because we do not yet know all the different kinds of individuals who will be best served in supported employment. And it is perhaps time to give up our allegiance to "programs" and "models," respecting instead the unique gifts, dreams, and needs of each person with a disability.
People with disabilties are not the only one who stand to benefit from greater choice and fewer boundaries within the system. The more this population is mainstreamed, the more people without disabilties interact with them on a regular basis in settings where differences between them are de-emphasized. This can only raise the consciousness of society at large for a signkificant minority in the most positive of ways. It is not being overly simplistic or naive to suggest that when this happens everyone gains.
The commitment to integration needs constaqnt reaffirmation. It is still easier than it ought to be to slip back into thinking and operating with unnecessary boundaries--boundaries between people with disabilities and people without them, between employment services and employers, between service providers and advocates, and, finally, between people who receive services and people who govern services. At thier often elusive best, supported employment techniques can give us a standard for an approach that puts inclusion and self-determination for people with sever disabilities ahead of any other goals.
. Bellamy, G.T., Rhodes, L., Mank, D., & Albin, J. (1988). Supported Employment. Baltimore MD: Paul H. Brookes Publishing Company.
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|Date:||Mar 22, 1993|
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