In the June 2007 issue, I read with interest the article, “Achieving Community Membership Through Community Rehabilitation Provider Services,” by Metzel, Boeltzig, Butterworth, Sulewski, and Gilmore concerning progress made toward community membership on the part of individuals receiving services from community rehabilitation providers (CRPs). The authors concluded that people with intellectual disabilities (IDs) are more likely to work in congregate settings than they are to work in integrated settings. Metzel et al. suggested that to foster accelerated change toward integrated employment, funding sources should direct financial resources away from congregate work settings.
As I read the article (Metzel et al., 2007), I found myself questioning the value assumptions behind the study. The study compared the number of consumers in congregate employment or nonwork congregate settings and those in integrated settings. The implicit value judgment was that congregate settings are bad, or at least less valuable, than integrated settings, which are good.
I found it fascinating that absent was information concerning the value of integrated or facility-based employment to consumers. Did anyone ask people working in facility-based or integrated work sites whether they liked those settings? Did anyone ask participants if they selected the work location from alternatives during their Individual Service Plan meetings? Did the authors investigate what I call “the boomerang effect” in supported employment? That is, we help people move from congregate to integrated settings and many come right back. Are those individuals telling us something about their values and/or our services? In short, did anyone ask what consumers valued?
What I think is missing is the input and reaction of consumers who select our services. Realizing studies have limited purposes, the values of consumers were left out, and, therefore, a critical piece of information was not considered. After all, limited purpose or not, the authors (Metzel et al., 2007) recommended changes in funding that would decrease available work choices. I think we ought to do consumers the courtesy of gaining their input on the matter.
From my perspective, it seems that we in human services often make such value judgments. We have a set of values, and we assume they are shared by the consumers, families, advocates, and the community we serve. How do we know these values are shared by these groups? Payne (1996) discussed erroneous assumptions that school personnel often make concerning values of students and their families who experience poverty. We know that there is a correlation between poverty and ID (Hurley, 1969), and we know that many consumers and families live in poverty (The Arc, 2005). We should be aware of variation in values among those we serve rather than assuming we share a common value base. Values can and do change. New experiences in different work settings can precipitate such value changes. However, we need to understand and honor the consumer's values, and we need to remember that the decision to change is the consumer's.
Sometimes, I think research on congregate settings suffers from what I call the “school lunch syndrome.” The staff in the school cafeteria could be serving meals that would win culinary arts awards, and students would still say the food was awful. Why? Because there is an unwritten and unspoken expectation that students will complain about food in a school cafeteria. Is the same expectation true among some consumers in congregate work settings? How do we know?
I think there is a way to get information on values. We can learn the values of consumers by their behavior, just as we do with most people. We can prattle on about values, but what we truly value is manifested by how we act. When given the opportunity to interview for a job, what do consumers do? When consumers secure a job, how well do they do it? How long do they keep it? If the person leaves the job, why, and where did they go? Do we have documentation of consumers refusing to participate in either integrated or congregate work settings? Are they complaining to independent case managers about congregate settings? Are their families or advocates? What concerns are expressed about integrated and congregate employment? How are we addressing them? Perhaps I was absent the day 62 people from our workshop paraded with protest signs in front of our building, but I think I would have heard about it.
In a previous article (Weikle, 1999), I observed that people with similar values, backgrounds, world views, ages, race, and so forth, tend to group themselves together socially. I do. I value cars from the 1950s and 1960s, and I socialize with others who value them. I like computers, and I am friends with people who like them. I do not value sports, so I do not frequent sporting events or belong to sports-oriented social groups. I do not let others determine my values. Yet, Metzel et al. (2007) seem to be making value judgments for consumers about where they should work.
I think a recent personal experience of mine may be relevant to this situation. A little over a year ago, I had triple bypass surgery on my heart. When I needed surgery, I was not in mental or physical shape to make decisions about treatment. Fortunately, my wife of 37 years was with me, and she was my advocate throughout those difficult days. In fact, were it not for her help in coping with a major medication reaction, I would not be here.
Now recovered, I find myself interacting with several physicians for follow up. One of them said, “I am writing a prescription for. … You will take this three times a day.” I said, “No, I will not.” The physician was dumbfounded because he is, after all, a physician not used to being challenged. I said, “You may suggest I take that medication. You will tell me why and what the benefits and side-effects might be. You will discuss alternatives. I decide what to do.” Once the shock wore off, we developed a mutually respectful relationship. I fired three physicians and walked out on two because they were so arrogant and rude I could not abide them.
In those situations, I was the consumer. I decided what was valuable and what was not. I chose the course of action based on those values. I rejected physicians who offered one choice—theirs. As a CRP, especially in my geographical area where there is a choice of providers, I believe those who select providers are in the same role I was with my doctors. As a provider of work services, we offer choices. The consumers determine what is of value and select or reject services accordingly. I would never approach consumers in an integrated setting and tell them they ought to work in the workshop. I would never walk into the workshop and tell people they should get a job in an integrated setting. We honor choice.
Metzel et al. (2007) noted that legislation endorsing supported employment occurred in 1984. I was doing job coaching in Nebraska in 1973. I have worked with adults with IDs in every aspect of services in numerous settings. I mention this because the people with whom I partner have taught me a great deal about human services. They have taught me to provide the greatest variety of choices and widest range of new experiences in varying settings, encourage and support them as they make life changes, and get out of their way. They taught me that where a person works is their choice and not that of academic researchers, funding sources, government officials, accreditation groups, program administrators, or regulators, however well intentioned those individuals or groups may be. We advise, challenge, and support; the consumer decides.
We champion choice and consumer-directed services as values, yet it appears Metzel et al. (2007) would limit work choices to one: an integrated job. There was a time 50 years ago when there were just two choices, institutionalization or staying with parents. It took decades to widen the range of choices, and I think more choices are better than fewer. I believe adopting the authors' recommendations would move us back to the flawed “one-size-fits-all” service mentality of 50 years ago. Have you ever tried to wear anything that said “One size fits all?” What it should really say is, “This size fits no one.”
Critics of workshops imply they are like camps in which thousands are held prisoner and forced to labor against their will. Visions of huddled masses yearning to breathe free come to mind. In my experience, that belief is not reality. I know hundreds of people with IDs participating in workshops and performing valued work. I know many who selected integrated employment and who are equally enthusiastic about that alternative. It is their choice.
How long will it take before we, as service providers, abandon the arrogance that afflicts some of the physicians I described? Perhaps those of us in rehabilitation should consider a little humility. I often joke that were I to win the lottery, I would found The National Coalition to Leave People Alone. Perhaps a subsidiary would be The National Coalition Against Value Imposition.
Donald W. Weikle, Jr., PhD (firstname.lastname@example.org), Executive Director, Peak Community Services, Inc., 1416 Woodlawn Ave., Logansport, IN 46807