Thoughts on Wolf Wolfensberger's "How to Comport Ourselves in an Era of Shrinking Resources in Intellectual and Developmental Disabilities, Vol. 48, No. 2, pp. 148-162

I think this will be my last blog on Wolf's article. I am thankful that he continues to be provocative enough to cause me to expend this amount of energy reading and digesting his thoughts on the matter of a potential crash of civilization as we know it. Damn, but don't we need to sometimes get excited about something to really make sense of it, anymore!

Recently I had the privilege of taking part in some research discussion about the value of "Personal Support Workers" to seniors' health, and I have long been a keen advocate of the value of "Developmental Service Workers" to people with developmental disabilities. I regularly respond to the somewhat rhetorical question of "why do we treat these people so poorly, and accord them so little respect, when they just might be, dollar for dollar, the best value in the [health care/developmental services] universe?" with my own version of a Wolf Wolfensberger answer: because they are devalued, that's why! By their own willingness to devote their personal care to people who themselves are so devalued, they are devalued themselves.

What should we do? We should smarten up, that's what!

I mentioned in my first blog on this topic that Wolf observes that "interest groups" are more inclined to hold rallies to "protect their jobs" than to advocate for the "people they serve". This may be so, but it just may be the case that some recognize the following: what we might be fighting for (or against) is our own future! Statistics relating to Ontario's Alzheimer's and related dementia population suggest a near-doubling of the proportion of the population diagnosed with Alzheimer's disease between now and 2038 (Alzheimer Society Rising Tide, 2010). Already, almost half of those diagnosed are in some form of long term care institution. The rest are presumably in short-term hospital or acute care settings, because only about a third of those diagnosed are living at home themselves or with family. Hospital emergency waits in Ontario are already connected indirectly to the numbers of seniors in hospital beds who need less than hospital care but do not have a suitable option otherwise, and are blocking new admissions to hospital.


Wolf's admonition (Recommendation 9 of 12) to "fight to the bitter end" (p. 157) to preserve services which prevent the escalation of services to higher and higher levels of support, and therefore, higher expenditures is brought forward here. He cites as an example home help services which maintain people in their own homes rather than see them escalate to nursing home. We seem to fund the high end better and more securely than the low end in the spectrum of services, so we should NOT be surprised that people who should be served in their own homes in the community, in their family, or in lower-support areas for longer periods of time before escalating to a higher-support, more costly alternative, end up more quickly in such better-supported systems.

In an earlier blog I stated: "I concur with Wolf when he says the cuts will be largely decided by administrative levels of the bureaucracy who do not really know the service sector, or who have very little clinical training or experience. Such has also been my experience. Real people with real needs often get hurt at times like these, and so do the champions who attend to their needs in the face of little to no support, financial or otherwise."

One of the reasons our systems operate in such an irrational, non-strategic and counter-intuitive fashion, is because we have been schooled this way in our thinking. Short-term thinking prevails over taking the long view. "What's in it for me?" thinking is virtually a standard in our Western thinking, and as an attitude, it is all around us. Executive compensation plans are a good example of this, and no more so than in the areas furthest from humanitarian in orientation - banks, oil companies, financial institutions and real estate development firms as a few examples. Competition over collaboration. Intellectual property protection over  sharing life-enhancing ideas that make a better world for those who now can barely make it through the day. Our lives are more hurried than ever, but how much of that is quality time?

Strategies to "get the monkey off our back" are seen in mental health, developmental disabilities, and probably (though I do not have the same direct experience, yet), seniors health care. Bad discharge decisions, over-reliance on family, volunteer, and underfunded community support systems, and a host of other "barely visible" attempts to keep people safe and housed and supported in the least expensive way possible are completely discounted because there is no lobby, no VOICE, no association of advocates, loud enough to speak up and demand action. Even if there were, it will probably be received in a manner not unlike the Autism lobby which laboured for DECADES for something which is so easily documented and can by comparison be so easily related to by the rational mind.

This is not to discount the fabulous work being done by organizations, individuals and even Provincial associations - which just may be credited with whatever progress we have made. And there have been some governments, in my experience, of all political leanings (at least in Ontario) who have contributed substantially to the developments that have taken place (Ontario closed its last remaining Schedule I (directly government operated) institutions in 2009, a process that was begun with a Conservative government, continued through successive Liberal, New Democrat, Conservative, and now Liberal, governments).

Here are some of my suggestions, which I think are not different from those Wolf has given:
1. Stop the fighting! For-profit operators being shunned by non-profit board-operated organizations for one. Day support service operators versus residential support service operators for another. Competing non-profits operating in the same jurisdictions yet another. One group of ideologues versus another, of any ilk.
Evidence-based versus "new age" philosophies of care and service.
2. Start looking at outcomes more than process. ARE people getting to valued social roles, REALLY? Or are they the human capital on whose backs people are being employed? Just who calls the shots, in a residential setting, or in a day service? The needs of the persons served, or is it the government regulations, union, organizational budget, wishes of the leader, parents' lobby, or something else entirely?
3. Stop over-promising and under-delivering. That game is very old and will not lead to credibility, especially when times get tough. A variant of that game is to use high-support POTENTIAL service recipients to bolster your proposal for funding a new service, then when it is approved, use screening mechanisms to ensure the high-support people DON'T ACTUALLY GET ADMITTED, so you have a well-funded program with lower-support demands on it. This often gets played hard in the closing days of an institutional closure. Don't imagine that once the institution gets closed, you aren't going to be put under considerable pressure to pay that back, somehow, and perhaps for a very long time. It would be much better to under-promise and over-deliver, although that may mean you will eventually fall under scrutiny as a service that delivers luxury services and still face the prospect of a cut-back!
4. Start TRULY valuing front-line staff, not only giving lip service, but supporting, training, investing in, and retaining the best people, many of whom are worth much more than the best-paid executives in the country. On that I agree with Wolf, we seem to have our priorities crooked. "Solidarity, collaboration, and interconnectedness" for example, over self-absorbed individualism and "post-modern" values and behaviour.
5. STOP shining the righteous light on the barely relevant - to shine it instead on the important aspects of what needs to be done. Thus, stop "language policing", "band-wagon jumping", "fad following", "buzz-word parrotting" and so on. It takes energy that is best directed at more basic activities. Focusing more on the outcome and understanding, rather than mostly on the means or the political correctness, of getting things done, can help. Thus if a person is respectful and courageous in defending and developing valued social roles for a person, focus on that, and not on their characterization of a person as "mentally retarded". If a self-advocate speaks about the hurt and distress use of such a label causes, respect their wish and use their recommended phrase instead when speaking in their presence. But don't spend a lot of energy and time debating which of dozens of euphemisms is the best one to use to describe the phenomenon of a person with an intellectual impairment or learning disability. For most instances, referring to people by name is vastly superior than referring to them by their class, category, or diagnosis, anyway.

While it is sometimes, and maybe often, the case that one's language is a window to one's soul or consciousness, language is also a means of trying to work out problems and create new opportunities. Strangling a thought before it is even born is bad practice, at least in my world.

I really think that sometimes Wolf's long experience in the trenches of developmental disabilities (indeed, more like defending the interests of a host of marginalized human beings) must be very hard to live with. I marvel at how he doesn't stop, when many people upon viewing his world and realizing there is so much inertia and so many obstacles to achieving that vision, would simply fall into despair. I can forgive him his hyperbole, and his sarcasm, and his occasional "s--t-disturbing" provocativeness, when I think how it must be to be able to see so clearly when all around him seem stuck in self-deceipt. The man gets it, and we don't. So simple. Wolf, I'm going to keep listening as well as I can, please stick to your guns.