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.
Wednesday 23 June 2010
Friday 18 June 2010
Almost the last instalment of my review of Wolfensburger's "How to Comport Ourselves..." in Intellectual and Developmental Disabilities, Vol. 48, No. 2, pp. 148-162
I promised to finish my recap of Wolfensburger's last few points in his article "How to Comport Ourselves in an Era of Shrinking Resources" in the Journal of Intellectual and Developmental Disabilities, Vol. 48, No. 2, pp. 148-162 published by the American Association on Intellectual and Developmental Disabilities (April 2010). In the last section, Wolf tackles a specific example of "an arrangement of great promise that falls partially into the category of least bad alternative" (p. 160)
Wolf explains that the unemployment rate for handicapped people has been 60-70%, "despite all the vocational, rehabilitation, and supported employment efforts and a roughly doubling of expenditures in recent years" (p. 160). Yet, he says, nobody has achieved much thinking "outside of the employment box". He claims that he has been proposing, in vain, developing unpaid, valued adult work roles (for a number of reasons he explains in his writings on Social Role Valorization). According to Wolf, there have been at least four obstacles to unpaid work by handicapped adults; 1. North Americans now equate work with jobs - which Wolf declares was not always like that - once upon a time, everybody worked, most often without pay, but simply for their "keep"; 2. Ideologues have created an environment where unpaid work is interpreted negatively, shunned, and devalued. He closes this argument with "A handicapped person who helps to clean up two neighborhood businesses on an unpaid basis is more contributive to society than the executve of the Lehman Brothers financial firm who received half a billion dollars compensation a year (Roberts, 2008)..." (p. 160); 3. The paid service system ("empire" he calls it) lacks any incentive to develop unpaid work roles for dependent adults; 4. People don't get the idea of social role valorization and the importance of it above the notion that any work done by people with disabilities should be paid or it is not of value, is demeaning, or in some other way less than desirable.
Wolf's closing arguments include: acting ourselves, in a coherent, cohesive and compelling way, or else we can expect Society to act peremptorily in such a way that we get less than we could have perhaps bargained for otherwise; watch out for governments engaging in a "shell game" playing one advocacy group against another, "dividing and conquering" (his earlier notion of advocates seflishly pushing for their own singular agenda and "letting the devil take the hindmost"); draw up "doomsday plans" as some are doing in the business world - anticipatory planning, he calls it - to ensure an organized and respected response to situations that may develop in tmes of severe fiscal restraint; develop a "Think Tank" and/or series of national meetings with "wise participants" with a goal to evolve national strategies and policies which can be presented when needed.
Lastly, Wolf encourages us NOT to be like the "institutional people" of the 1970's who believed they would last forever - "do not fall into this recurring error [of not listening], but be imaginative, less fearful, and think ahead, and keep the welfare of people with impairments upmost." Unable to resist a "parting shot" he closes with "You should count yourself fortunate that you hear me say today some of the things that financial expert Suze Orman tells people for $80,000 a shot (Kolhatkar, 2009)..." (p. 161)
In my next blog, and probably the last submission on this article, I will propose my own thoughts and an overall review of Wolf's work in this article, in relation to the Ontario experience and what I have seen and heard from Wolf before.
Wolf explains that the unemployment rate for handicapped people has been 60-70%, "despite all the vocational, rehabilitation, and supported employment efforts and a roughly doubling of expenditures in recent years" (p. 160). Yet, he says, nobody has achieved much thinking "outside of the employment box". He claims that he has been proposing, in vain, developing unpaid, valued adult work roles (for a number of reasons he explains in his writings on Social Role Valorization). According to Wolf, there have been at least four obstacles to unpaid work by handicapped adults; 1. North Americans now equate work with jobs - which Wolf declares was not always like that - once upon a time, everybody worked, most often without pay, but simply for their "keep"; 2. Ideologues have created an environment where unpaid work is interpreted negatively, shunned, and devalued. He closes this argument with "A handicapped person who helps to clean up two neighborhood businesses on an unpaid basis is more contributive to society than the executve of the Lehman Brothers financial firm who received half a billion dollars compensation a year (Roberts, 2008)..." (p. 160); 3. The paid service system ("empire" he calls it) lacks any incentive to develop unpaid work roles for dependent adults; 4. People don't get the idea of social role valorization and the importance of it above the notion that any work done by people with disabilities should be paid or it is not of value, is demeaning, or in some other way less than desirable.
Wolf's closing arguments include: acting ourselves, in a coherent, cohesive and compelling way, or else we can expect Society to act peremptorily in such a way that we get less than we could have perhaps bargained for otherwise; watch out for governments engaging in a "shell game" playing one advocacy group against another, "dividing and conquering" (his earlier notion of advocates seflishly pushing for their own singular agenda and "letting the devil take the hindmost"); draw up "doomsday plans" as some are doing in the business world - anticipatory planning, he calls it - to ensure an organized and respected response to situations that may develop in tmes of severe fiscal restraint; develop a "Think Tank" and/or series of national meetings with "wise participants" with a goal to evolve national strategies and policies which can be presented when needed.
Lastly, Wolf encourages us NOT to be like the "institutional people" of the 1970's who believed they would last forever - "do not fall into this recurring error [of not listening], but be imaginative, less fearful, and think ahead, and keep the welfare of people with impairments upmost." Unable to resist a "parting shot" he closes with "You should count yourself fortunate that you hear me say today some of the things that financial expert Suze Orman tells people for $80,000 a shot (Kolhatkar, 2009)..." (p. 161)
In my next blog, and probably the last submission on this article, I will propose my own thoughts and an overall review of Wolf's work in this article, in relation to the Ontario experience and what I have seen and heard from Wolf before.
Thursday 17 June 2010
Next Instalment of my review of Wolf Wolfensburger's "How to Comport Ourselves in an Era of Shrinking Resources" in Intellectual and Developmental Disabilities, Vol. 48, No. 2, pp. 148-162
Here I will review the final three recommendations from Wolf for developing "broad strategy proposals that aim at a favorable cost/yield ratio" (p. 153). I reviewed the previous nine recommendations in previous blogs.
Wolf's tenth recommendation is to take the competency development of impaired people much more seriously, remarking that currently, "there are enormous variations in competency emphases in different services and settings, including in family life" (p. 158). His point is that development of greater personal, social and economic competencies lessens dependence and reduces the need for paid services, and so should be cultivated from the earliest age. While many people would see this as stating the blindingly obvious, Wolf points out that social and economic competencies have been neglected, at least in part due to a growing emphasis on self-determination (without linking this to competencies) and on "inclusion" (his quotation marks) without corresponding ties to competency acquisition. With his tongue firmly in cheek, Wolf points out that "social competencies include such things as courtesy, obedience, cooperativeness, and social graces, and economic competencies include the ability and willingness to work and to submit to the instructions of superiors..." (p. 158). I am reminded of a Family Guy episode where Peter (the father) is tested and found to be intellectually and developmentally impaired, progresses to wearing a helmet and begins to act as though entitled to all manner of narcisisstic treatment and special dispensation, citing as excuses for a whole litany of selfish, boorish and abominable behaviour, "Special Needs!!!!". Wolf's explanation for how it got to be this way - "people having gotten insanicerated." (p. 158).
This leads Wolf to discussion of services having hired ever more and more incompetent staff: "In fact, they have been scraping the bottom of the employability barrel, hiring the people who are the last step away from unemployability and who sometimes do not even speak the language of those served....[although allowing that]...these people sometimes are good caretakers, especially where body care is needed, but are very poorly equipped to be role models, teachers, trainers, and developmentalists and to foster positive appearance, normal behaviors, good manners, and clear and civil speech..." He goes on, and explains that in his opinion, such hiring reflects the philosophy of service employers that competency development is unimportant, or perhaps that service recipients may not have any growth potential in those areas, and there lacks incentive for services to cultivate these competencies.
Wolf takes a moment to point out the difficulties that become inherent when considering that children have vastly more unactualized potential for the development of competencies than adults do, and therefore, despite the advantage of having more family support, might be expected to command more of the service dollar. The dilemma for Wolf is that many adults are abandoned or in the care of parents who might be progressively losing their capacity to care for them. In my experience, there have been two "generations" at least of adults raised in the care of families - one whose competencies have NOT been developed (but whose care may have been excellent) but there is huge potential, at any age, to develop it. There is also one of people whose parents kept them in the community and have raised them to be as independent as possible, accessing plenty of academic and lifeskill supports and development opportunities, though still requiring advocacy and protective care as well as some relatively minimal supports for basic living responsibilities such as banking, cooking and negotiating social and economic systems. The first group, if abandoned through death or incapacities of their parents or siblings or other such caregivers, absolutely require significant amounts of support, and may take a long time developing, if at all, competencies for independent living, though they have the potential for it. The second group, if abandoned through death or incapacities in the same manner as the other group, may find themselves regressed by the system, as it often cannot address the unique combinations of independence - kind of like the "splinter skills" referred to when describing people with severe specific learning disabilities (such as autism spectrum disorders) require innovative and uniquely flexible accommodations. They will often be "under-accommodated", leading in a number of cases to crisis and expensive interventions to rescue them, or "over-accommodated" at significant expense more than necessary to meet their needs, which often continues and becomes an entrenched phenomenon of the service system. I have lots of experience in this phenomenon, and have observed this tendency over the years, especially in the Ontario scene, following waves of de-institutionalization. I wish Wolf had talked a bit more about this in his 10th point, but I suspect that discussion will be for another day. Knowing what I do about Wolf, this hasn't flown in under his radar!
Wolf's eleventh point relates to public attitudes. I am reminded here of Wolf's workshops, and those of his proteges and colleagues, on the process of "Distantiation", of the march to maltreatment, beginning with the noticing and societal valuation of differences. At some point, I will blog separately on this process as I was helped to understand it by Darcy Miller and Wolf himself in a number of workshops and presentations I attended over the years. Wolf encourages us to ensure that "Unrelenting attention" be paid to public attitudes. If these attitudes turn bad, says Wolf: "this will override all safeguards, including laws, and endanger service funding even more. Here he also points out that this goes far beyond "language policing" (p. 158), noting there is almost no evidence that "the so-called 'people first' rules change anybody's mind content, while a great deal is known as to which attitude change strategies are effective, or even highly effective..." Here he cites a few examples of how this can be done, (but read the PASSING Manual (Wolfensburger and Thomas) for a detailed exposition of this).
Wolf's twelfth point relates to his concept of "deathmaking", and warning that people are even now being "successfully brainwashed" to see this as the answer to many problems. He sums it up nicely in this: "If the very lives of impaired and dependent people are not sacred, and not deemed worth living, how can we expect people to pay out vast sums in support of such persons once they are born and grow up?" Naturally, Wolf goes on in some detail about his opinions on abortion, infanticide, suicide, suicide assistance, and involuntary euthanasia, particularly as it is more and more possible, with every new discovery from the medical community, to diagnose conditions in the womb, including risk for developing disease and disability at older ages (such as Alzheimer's).
Wolf cites himself, in his 2003 monograph The Future of Children with Severe Impairments: What Parents Fear and Want, and What They and Others May Be Able to Do About It (pp. 43-53) to further explore "several of these 12 points" in greater detail.
Wolf closes his exposition of 12 broad strategy proposals aiming at a favorable cost/yield ratio by allowing that there would be additional ways of saving money in human services, and many more again ways to re-distribute and save money outside of human services, which lie outside his scope at the present time. He also remarks about picking battles wisely.
Having discussed these proposed strategies, Wolf enunciates several principles that support the strategies. Some of these are quite familiar to those of us who have followed Wolfensburger's teachings for some time:
1. Solidarity, collaboration, and interconnectedness versus radical individualism - the "we" versus "me" argument. He encourages us to eschew wanting to profit from the hardship of others, and to be willing to carry an equitable burden so that hardship does not fall disproportionately on those who are undeserving of the burden or make convenient targets for shouldering disproportionate burden through weakness or marginalization; 2. Justice - particularly equitability; 3. The principle of subsidiarity, which he explains is that problems need to be "solved at the lowest possible level of social organization" (p. 159) - Wolfensburger opines that "Many of the current societal and human service dysfunctionalities are fruits of this violation of a sound principle..."; 4. Realism - the idea that the strategies are plausible and achievable, which will be necessary for them to "gain ground" - While "Petitions, demonstrations and so forth may save a particular service, ...[they]... do not contribute to cost containment"
In my next blog, I will finish the review of Wolf's article (which next goes into a particular "for instance", talking about the issue of tackling unemployment of handicapped people and Wolf's suggestion of developing more unpaid but valued work.
Wolf's tenth recommendation is to take the competency development of impaired people much more seriously, remarking that currently, "there are enormous variations in competency emphases in different services and settings, including in family life" (p. 158). His point is that development of greater personal, social and economic competencies lessens dependence and reduces the need for paid services, and so should be cultivated from the earliest age. While many people would see this as stating the blindingly obvious, Wolf points out that social and economic competencies have been neglected, at least in part due to a growing emphasis on self-determination (without linking this to competencies) and on "inclusion" (his quotation marks) without corresponding ties to competency acquisition. With his tongue firmly in cheek, Wolf points out that "social competencies include such things as courtesy, obedience, cooperativeness, and social graces, and economic competencies include the ability and willingness to work and to submit to the instructions of superiors..." (p. 158). I am reminded of a Family Guy episode where Peter (the father) is tested and found to be intellectually and developmentally impaired, progresses to wearing a helmet and begins to act as though entitled to all manner of narcisisstic treatment and special dispensation, citing as excuses for a whole litany of selfish, boorish and abominable behaviour, "Special Needs!!!!". Wolf's explanation for how it got to be this way - "people having gotten insanicerated." (p. 158).
This leads Wolf to discussion of services having hired ever more and more incompetent staff: "In fact, they have been scraping the bottom of the employability barrel, hiring the people who are the last step away from unemployability and who sometimes do not even speak the language of those served....[although allowing that]...these people sometimes are good caretakers, especially where body care is needed, but are very poorly equipped to be role models, teachers, trainers, and developmentalists and to foster positive appearance, normal behaviors, good manners, and clear and civil speech..." He goes on, and explains that in his opinion, such hiring reflects the philosophy of service employers that competency development is unimportant, or perhaps that service recipients may not have any growth potential in those areas, and there lacks incentive for services to cultivate these competencies.
Wolf takes a moment to point out the difficulties that become inherent when considering that children have vastly more unactualized potential for the development of competencies than adults do, and therefore, despite the advantage of having more family support, might be expected to command more of the service dollar. The dilemma for Wolf is that many adults are abandoned or in the care of parents who might be progressively losing their capacity to care for them. In my experience, there have been two "generations" at least of adults raised in the care of families - one whose competencies have NOT been developed (but whose care may have been excellent) but there is huge potential, at any age, to develop it. There is also one of people whose parents kept them in the community and have raised them to be as independent as possible, accessing plenty of academic and lifeskill supports and development opportunities, though still requiring advocacy and protective care as well as some relatively minimal supports for basic living responsibilities such as banking, cooking and negotiating social and economic systems. The first group, if abandoned through death or incapacities of their parents or siblings or other such caregivers, absolutely require significant amounts of support, and may take a long time developing, if at all, competencies for independent living, though they have the potential for it. The second group, if abandoned through death or incapacities in the same manner as the other group, may find themselves regressed by the system, as it often cannot address the unique combinations of independence - kind of like the "splinter skills" referred to when describing people with severe specific learning disabilities (such as autism spectrum disorders) require innovative and uniquely flexible accommodations. They will often be "under-accommodated", leading in a number of cases to crisis and expensive interventions to rescue them, or "over-accommodated" at significant expense more than necessary to meet their needs, which often continues and becomes an entrenched phenomenon of the service system. I have lots of experience in this phenomenon, and have observed this tendency over the years, especially in the Ontario scene, following waves of de-institutionalization. I wish Wolf had talked a bit more about this in his 10th point, but I suspect that discussion will be for another day. Knowing what I do about Wolf, this hasn't flown in under his radar!
Wolf's eleventh point relates to public attitudes. I am reminded here of Wolf's workshops, and those of his proteges and colleagues, on the process of "Distantiation", of the march to maltreatment, beginning with the noticing and societal valuation of differences. At some point, I will blog separately on this process as I was helped to understand it by Darcy Miller and Wolf himself in a number of workshops and presentations I attended over the years. Wolf encourages us to ensure that "Unrelenting attention" be paid to public attitudes. If these attitudes turn bad, says Wolf: "this will override all safeguards, including laws, and endanger service funding even more. Here he also points out that this goes far beyond "language policing" (p. 158), noting there is almost no evidence that "the so-called 'people first' rules change anybody's mind content, while a great deal is known as to which attitude change strategies are effective, or even highly effective..." Here he cites a few examples of how this can be done, (but read the PASSING Manual (Wolfensburger and Thomas) for a detailed exposition of this).
Wolf's twelfth point relates to his concept of "deathmaking", and warning that people are even now being "successfully brainwashed" to see this as the answer to many problems. He sums it up nicely in this: "If the very lives of impaired and dependent people are not sacred, and not deemed worth living, how can we expect people to pay out vast sums in support of such persons once they are born and grow up?" Naturally, Wolf goes on in some detail about his opinions on abortion, infanticide, suicide, suicide assistance, and involuntary euthanasia, particularly as it is more and more possible, with every new discovery from the medical community, to diagnose conditions in the womb, including risk for developing disease and disability at older ages (such as Alzheimer's).
Wolf cites himself, in his 2003 monograph The Future of Children with Severe Impairments: What Parents Fear and Want, and What They and Others May Be Able to Do About It (pp. 43-53) to further explore "several of these 12 points" in greater detail.
Wolf closes his exposition of 12 broad strategy proposals aiming at a favorable cost/yield ratio by allowing that there would be additional ways of saving money in human services, and many more again ways to re-distribute and save money outside of human services, which lie outside his scope at the present time. He also remarks about picking battles wisely.
Having discussed these proposed strategies, Wolf enunciates several principles that support the strategies. Some of these are quite familiar to those of us who have followed Wolfensburger's teachings for some time:
1. Solidarity, collaboration, and interconnectedness versus radical individualism - the "we" versus "me" argument. He encourages us to eschew wanting to profit from the hardship of others, and to be willing to carry an equitable burden so that hardship does not fall disproportionately on those who are undeserving of the burden or make convenient targets for shouldering disproportionate burden through weakness or marginalization; 2. Justice - particularly equitability; 3. The principle of subsidiarity, which he explains is that problems need to be "solved at the lowest possible level of social organization" (p. 159) - Wolfensburger opines that "Many of the current societal and human service dysfunctionalities are fruits of this violation of a sound principle..."; 4. Realism - the idea that the strategies are plausible and achievable, which will be necessary for them to "gain ground" - While "Petitions, demonstrations and so forth may save a particular service, ...[they]... do not contribute to cost containment"
In my next blog, I will finish the review of Wolf's article (which next goes into a particular "for instance", talking about the issue of tackling unemployment of handicapped people and Wolf's suggestion of developing more unpaid but valued work.
Wednesday 9 June 2010
More on Wolf Wolfensburger's "How to Comport Ourselves in an Era of Shrinking Resources" in Intellectual and Developmental Disabilities, vol. 48, no. 2, pp. 148-162
In previous blogs I have written about the first four of Wolf Wolfensburger's broad strategies for giving a "favorable cost/yield ratio" in our field of endeavour (assisting people with intellectual and developmental disabilities). I continue here.
Wolf's fifth recommendation (of a total of 12) is to cut inequitably allocated services in favour of ensuring this goes to those with "similar needs" who get "little or nothing". Wolf may slightly overstate that "Often, it is handicapped people with a lot of powerful advocate figures behind them who get the palaces while their abandoned peers get the hovels" (p. 155), but he is not far off the mark in concept. He goes farther, however, than merely talking about evening the playing field: he talks about eliminating "luxuries" such as renting or owning a whole house; governments "shelling out astronomic sums in order to get the last few residents out of institutions" (p. 155), which "sits poorly with families who had taken care of an impaired person at home, and who were told that they had to do "more with less", while people who were about equally impaired got huge subsidies for community placements" (p. 155). My comments on this is that experience shows that it is sometimes the case that these cuts are made to the "extravagances" of inequitable funding, but it is much more rare to see the "freed-up" funds used for the more poorly (or non-) funded situations. If funders would honour such equalizing there would be, in my opinion, a lot more of it.
Wolf's sixth proposal has to do with the phenomenon that there are examples of services with more and less desirable alternatives. The ability to re-institute a less preferred, but still viable alternative, rather than cut all services leaving nothing in its place, would be preferable. He goes on to talk about a boy with partial vision being assigned two personal aides so that he could be maintained in a regular class. Wolf asks if every child assigned an aide really needs one, and could they not be shared, and "Are there never any suboptimal but still viable alternatives?" Wolf suggests that "Soon, personal aides might outnumber the students in a class". (p. 156). Here Wolf suggests that large classes are better than none at all; segregated [services] are better than none at all; sheltered workshops are better than having no day activities at all; and group homes are better than having institutions revived. Wolf states that "even segregated services can be normalized, normalizing, and social-role-valorizing in many ways". (p. 156)
Wolf points out that "the less preferred alternative may be both less luxurious and more equitable. For instance, there is something grotesque about schools not being able to supply soap and toilet paper, while impaired pupils show up with entourages of multiple attendants, service animals, and animal handlers". (p. 156). Going further still, he decries that impaired people have been enabled to choose the most expensive of several service or living options, and suggests there is nothing wrong with having family and friends bolster and upgrade services (with private funds, of course).
Seventh of 12 suggestions is vintage Wolf, giving high priority to volunteered and "extra-structural" services, services that are not part of the "system" of formal supports and organizations, whether individual or communal. Family, friends, citizen advocates, circles of support are some examples of these. Although some volunteered help is mediated by formal support organizations and by paid workers, such as Citizen Advocacy and Special Olympics organizations who pay staff to organize and lead the volunteer (unpaid) force, and as such fall in between the system and "extra-structural" services. Wolf chronicles the impacts of volunteers and credits them with, among other things, "prying intellectually disabled people out of the service system altogether, and saving many lives", and remarks about volunteers, that "even after their initial volunteer engagement ends, they are often recruitable again later" (p. 156).
After making these remarks, Wolf observes, again accurately according to my experience, that "paid staff supporting volunteers are often the first to be cut. This then makes people angry who want to volunteer but are not well handled. It may alienate them forever from volunteering (Kadlec, 2009)" (p. 156). He goes on to emphasize the importance of supporting these "extra-structural" services and volunteers "as being the only thing that in many instances will be protective of at least some impaired persons when the structures abandon them and/or when societal order collapses, as it did in New Orleans in 2005" (p. 157).
The eighth recommendation made by Wolfensburger is to hold onto at least a modest training and staff development budget, again observing that in his experience these are most often among the first to be cut. He cautions that cutting staff development budgets over too long a term produces "more incompetent staff than one would otherwise", who then become the base level of employee in the organization, so that future new employees get a very low standard of competence as they enter the organization, and lack good role models, mentors and teachers.
Ninth of his recommendations brings out more of Wolf's passion than the others - he says "we should 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. He cites as an example home help services which maintain people in their own homes rather than see them escalate to nursing home. He points out that this is a very predictable cut, and suspects that "the nursing home lobby is behind that." (p. 157). Into that example, Wolf also adds respite services and community transportation assistance for people with disabilities, which can prevent (or at least significantly delay) escalation to higher expense services. Wolf cautions that this should NOT mean funding transportation services that serve people who have homes to live in to go to recreational events while others remain homeless or reside in nursing homes for lack of essential transportation, NOR does it mean providing subsidies to families with means, while transportation for the poor is unavailable. Wolf also includes community integration supports for released convicts, which he says "typically cost a tiny fraction of imprisonment costs, save vast sums by reducing recidivism, but are also commonly among the first to be eliminated" (p. 157). He goes on to give examples, where "penny-wise and pound-foolish" (p. 157) strategies are employed, and concludes "curtailing expenses at one level or department of government in a way that increases the expenses of another is either psychopathic or insane", including uploading to federal government - and I would add, in our experience in Canada, downloading to municipal levels of government (p. 157) which merely shifts the onus but is still taking the taxpayer's money, and sometimes, taking more of it than before. Into the "extra-structural" supports and services area, Wolf also discusses what he calls "service multipliers" where 'middlemen' are cut out, and the impact of a dollar of support is "multiplied" by factors which include bringing in other services that are less expensive, volunteer time and effort, and some freedom to work without as many constraints, thereby getting more 'bang for the buck'. His example is of "giving small subsidies to families who will put in a lot of their own time and money to support a dependent family member, thus providing much unpaid service and keeping the person out of expensive service arrangements" (p. 158). He also supports Citizen Advocacy offices as examples of such "service multipliers".
More on this interesting article, including the final three recommendations for strategies, and my own comments and analysis based on my Ontario experience, in my next Blogs.
Wolf's fifth recommendation (of a total of 12) is to cut inequitably allocated services in favour of ensuring this goes to those with "similar needs" who get "little or nothing". Wolf may slightly overstate that "Often, it is handicapped people with a lot of powerful advocate figures behind them who get the palaces while their abandoned peers get the hovels" (p. 155), but he is not far off the mark in concept. He goes farther, however, than merely talking about evening the playing field: he talks about eliminating "luxuries" such as renting or owning a whole house; governments "shelling out astronomic sums in order to get the last few residents out of institutions" (p. 155), which "sits poorly with families who had taken care of an impaired person at home, and who were told that they had to do "more with less", while people who were about equally impaired got huge subsidies for community placements" (p. 155). My comments on this is that experience shows that it is sometimes the case that these cuts are made to the "extravagances" of inequitable funding, but it is much more rare to see the "freed-up" funds used for the more poorly (or non-) funded situations. If funders would honour such equalizing there would be, in my opinion, a lot more of it.
Wolf's sixth proposal has to do with the phenomenon that there are examples of services with more and less desirable alternatives. The ability to re-institute a less preferred, but still viable alternative, rather than cut all services leaving nothing in its place, would be preferable. He goes on to talk about a boy with partial vision being assigned two personal aides so that he could be maintained in a regular class. Wolf asks if every child assigned an aide really needs one, and could they not be shared, and "Are there never any suboptimal but still viable alternatives?" Wolf suggests that "Soon, personal aides might outnumber the students in a class". (p. 156). Here Wolf suggests that large classes are better than none at all; segregated [services] are better than none at all; sheltered workshops are better than having no day activities at all; and group homes are better than having institutions revived. Wolf states that "even segregated services can be normalized, normalizing, and social-role-valorizing in many ways". (p. 156)
Wolf points out that "the less preferred alternative may be both less luxurious and more equitable. For instance, there is something grotesque about schools not being able to supply soap and toilet paper, while impaired pupils show up with entourages of multiple attendants, service animals, and animal handlers". (p. 156). Going further still, he decries that impaired people have been enabled to choose the most expensive of several service or living options, and suggests there is nothing wrong with having family and friends bolster and upgrade services (with private funds, of course).
Seventh of 12 suggestions is vintage Wolf, giving high priority to volunteered and "extra-structural" services, services that are not part of the "system" of formal supports and organizations, whether individual or communal. Family, friends, citizen advocates, circles of support are some examples of these. Although some volunteered help is mediated by formal support organizations and by paid workers, such as Citizen Advocacy and Special Olympics organizations who pay staff to organize and lead the volunteer (unpaid) force, and as such fall in between the system and "extra-structural" services. Wolf chronicles the impacts of volunteers and credits them with, among other things, "prying intellectually disabled people out of the service system altogether, and saving many lives", and remarks about volunteers, that "even after their initial volunteer engagement ends, they are often recruitable again later" (p. 156).
After making these remarks, Wolf observes, again accurately according to my experience, that "paid staff supporting volunteers are often the first to be cut. This then makes people angry who want to volunteer but are not well handled. It may alienate them forever from volunteering (Kadlec, 2009)" (p. 156). He goes on to emphasize the importance of supporting these "extra-structural" services and volunteers "as being the only thing that in many instances will be protective of at least some impaired persons when the structures abandon them and/or when societal order collapses, as it did in New Orleans in 2005" (p. 157).
The eighth recommendation made by Wolfensburger is to hold onto at least a modest training and staff development budget, again observing that in his experience these are most often among the first to be cut. He cautions that cutting staff development budgets over too long a term produces "more incompetent staff than one would otherwise", who then become the base level of employee in the organization, so that future new employees get a very low standard of competence as they enter the organization, and lack good role models, mentors and teachers.
Ninth of his recommendations brings out more of Wolf's passion than the others - he says "we should 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. He cites as an example home help services which maintain people in their own homes rather than see them escalate to nursing home. He points out that this is a very predictable cut, and suspects that "the nursing home lobby is behind that." (p. 157). Into that example, Wolf also adds respite services and community transportation assistance for people with disabilities, which can prevent (or at least significantly delay) escalation to higher expense services. Wolf cautions that this should NOT mean funding transportation services that serve people who have homes to live in to go to recreational events while others remain homeless or reside in nursing homes for lack of essential transportation, NOR does it mean providing subsidies to families with means, while transportation for the poor is unavailable. Wolf also includes community integration supports for released convicts, which he says "typically cost a tiny fraction of imprisonment costs, save vast sums by reducing recidivism, but are also commonly among the first to be eliminated" (p. 157). He goes on to give examples, where "penny-wise and pound-foolish" (p. 157) strategies are employed, and concludes "curtailing expenses at one level or department of government in a way that increases the expenses of another is either psychopathic or insane", including uploading to federal government - and I would add, in our experience in Canada, downloading to municipal levels of government (p. 157) which merely shifts the onus but is still taking the taxpayer's money, and sometimes, taking more of it than before. Into the "extra-structural" supports and services area, Wolf also discusses what he calls "service multipliers" where 'middlemen' are cut out, and the impact of a dollar of support is "multiplied" by factors which include bringing in other services that are less expensive, volunteer time and effort, and some freedom to work without as many constraints, thereby getting more 'bang for the buck'. His example is of "giving small subsidies to families who will put in a lot of their own time and money to support a dependent family member, thus providing much unpaid service and keeping the person out of expensive service arrangements" (p. 158). He also supports Citizen Advocacy offices as examples of such "service multipliers".
More on this interesting article, including the final three recommendations for strategies, and my own comments and analysis based on my Ontario experience, in my next Blogs.
Thursday 3 June 2010
Part 3 of review of Wolf Wolfensburger's new article on "How to Comport Ourselves in an Era of Shrinking Resources in Intellectual and Developmental Disabilities, vol. 48 no. 2 pp 148-162
I can almost hear the "sacred cows" moo-ing as I read Wolf's "series of broad strategy proposals that aim at a favorable cost/yield ratio." (p. 153).
1. cut services with questionable validity or productivity - singling out in particular the "human services crazes" (those who have heard Wolf speak can probably almost hear his residual Germanic accent rolling the "r" in their heads as this phrase tumbles off his tongue - giving the phrase even more salience and making it even more memorable afterwards). "At any one time, a significant proportion of human service consists of the transaction of invalid crazes" (p. 153), which Wolf states arises out of "magical and superstitious thinking" - and suggests Shamanism would be preferable (I suppose, if we had to have one or the other) because it at least is "straightforward". In making this statement, Wolf also tells us that in favouring these crazes, what often gets lost are "valid pedagogies" that have been time-tested, sometimes over hundreds and thousands of years. In this same group are placed activities performed for "non-programmatic" rationales. These are issues that affect the way a service is delivered NOT based on people's identities or needs. Wolf suggests human service providers have been enculturated to believe that if the law, administrative or financial considerations require an action of a care provider, then it MUST be good for the client, and if something is denied or disallowed, then it MUST be bad for the client. How to tell if something is "non-programmatic"? Wolf suggests we think of them as "examples of the big "buts..." "But the law won't let us", "but our funder requires," "but our staff don't," and so on..." - so we ask ourselves, when a "but" comes to our mind, the objection might be because of some nonprogrammatic constraint. (A useful rubric, in my opinion). I used to say that in some organizations I consulted to back in the day, if people would put their clipboards down and actually engage with service recipients, their complaints about not having enough staff would have more currency. Non-programmatic activities are prompted to defend administrative structures, ward off lawsuits, prepare responses ahead of time for what might become service complaints, give justification for administrator time and activities, and so on. They often exist because they have always existed, at least in the memories of those who work in a service. Rarely are they questioned as a significant obstacle to service provision, although almost everyone seems to "hate" paperwork, meetings, and report-writing.
Wolf goes on to advocate for cutting out a large part of individual program planning and even case management. The sharp intake of breath of thousands of employed PLODs (People who Live Off Disabled people) can almost be heard here, where the crickets can be heard chirping and the loon's call from across the lake can be heard like it's right beside me. Although Wolf concedes these activities can be very helpful, in his opinion (and I would agree with him from my experience) "they have become so pro forma and bureaucratized that in terms of recipient benefits, they pay back only a small fraction of their enormous costs." I used to refer to the numbers of people who offered little input while maintaining their employment doing non-functional assistance work as the "uh-oh squad" - like those who stand around wringing their hands after an accident while the paramedics do their work. Wolf allows that the work of case management and individual program planning can continue on an unpaid voluntary basis as has been the case all along with families and volunteers. Spending countless hours filling out paperwork to justify provisions for a child with a handicap, and other examples of "bureaucratism" are cited as more unproductive time spent at a cost that might become unjustified, only in an economy of cutbacks. Wolf comments also that low-validity, nonprogrammatic and other unproductive activities may continue to be funded even while there are people left without ESSENTIALS. Wolf actually suggests civil disobedience in response to costly bureaucratism imposed from above in the federal-state-municipal-funder hierarchies: "One substrategy is to lobby for legislative relief, and another is to practice resistance and outright noncompliance as long as possible." (p. 154)
2. cut the funding of the more expensive operator(s) when there is a choice between two services that are "pretty much the same".
This seems like a no-brainer to me, and it boggles the mind that it would have to be stated. I guess, in New York, there is a very large state system and fewer non-profits than would be the case here in Ontario. Wolf notes that privately run services can change and reconfigure more quickly and less expensively than government ones. I think that Ontario has done well in developing its non-profit sector, however, my observations suggest that the same thinking can be applied within the non-profit sector, where some organizations are well advanced beyond others, and even between the non-profit and private-operator system in some instances, where better service, better responsiveness and less expense can be found in certain experienced "for-profit" operators than in the surrounding non-profits.
3. Get ready for another "sacred cow" to be sacrificed on the altar of cutbacks - Wolf suggests cutting funding for services that are, or come close to being, luxuries. In this he cites examples of questionable use of "service dogs" and the support structures that go with provision of them to people who are neither "blind, deaf or halt". Another example: helping people with profound physical disabilities to climb mountains, go skydiving - planned for from personal futures plans about "dreams" and "visions" and "egged on by advocates and service workers..." (p. 155) Even if they are paid for by raised funds, or private funders, Wolf bemoans the expenditures which he says should be spent on basics for people.
4. Another no-brainer in my opinion - we should cut down on extravagant salaries - which do exist even in human services, mostly in administrative and health care positions. Wolf suggests there might be a desirable side-effect too, if one of the administrators earning such a high salary might quit the field if the salary is cut to a more reasonable level - "then the people served might actually be better off..." Okay, Wolf, tell us what you REALLY think about administrators! Wolf includes overly rich retirement (pension) plans that allow early retirement at close to one's peak earning potential, which he refers to as an "incentive to retire very early and then take on a different job in human services at about the same pay as one's old job, and live excessively from the combination of one's pension, new salary, and eventually perhaps even a second pension on top of Social Security income..." (p. 155). A parting shot from Wolf on this one - "Exorbitant incomes in any field are particularly scandalous if the service recipients are overwhelmingly poor, as is the case in our field, welfare, and a few other fields and services..." (p. 155)
More on what Wolf would "cut" to survive in an era of shrinking resources in my next Blog.
1. cut services with questionable validity or productivity - singling out in particular the "human services crazes" (those who have heard Wolf speak can probably almost hear his residual Germanic accent rolling the "r" in their heads as this phrase tumbles off his tongue - giving the phrase even more salience and making it even more memorable afterwards). "At any one time, a significant proportion of human service consists of the transaction of invalid crazes" (p. 153), which Wolf states arises out of "magical and superstitious thinking" - and suggests Shamanism would be preferable (I suppose, if we had to have one or the other) because it at least is "straightforward". In making this statement, Wolf also tells us that in favouring these crazes, what often gets lost are "valid pedagogies" that have been time-tested, sometimes over hundreds and thousands of years. In this same group are placed activities performed for "non-programmatic" rationales. These are issues that affect the way a service is delivered NOT based on people's identities or needs. Wolf suggests human service providers have been enculturated to believe that if the law, administrative or financial considerations require an action of a care provider, then it MUST be good for the client, and if something is denied or disallowed, then it MUST be bad for the client. How to tell if something is "non-programmatic"? Wolf suggests we think of them as "examples of the big "buts..." "But the law won't let us", "but our funder requires," "but our staff don't," and so on..." - so we ask ourselves, when a "but" comes to our mind, the objection might be because of some nonprogrammatic constraint. (A useful rubric, in my opinion). I used to say that in some organizations I consulted to back in the day, if people would put their clipboards down and actually engage with service recipients, their complaints about not having enough staff would have more currency. Non-programmatic activities are prompted to defend administrative structures, ward off lawsuits, prepare responses ahead of time for what might become service complaints, give justification for administrator time and activities, and so on. They often exist because they have always existed, at least in the memories of those who work in a service. Rarely are they questioned as a significant obstacle to service provision, although almost everyone seems to "hate" paperwork, meetings, and report-writing.
Wolf goes on to advocate for cutting out a large part of individual program planning and even case management. The sharp intake of breath of thousands of employed PLODs (People who Live Off Disabled people) can almost be heard here, where the crickets can be heard chirping and the loon's call from across the lake can be heard like it's right beside me. Although Wolf concedes these activities can be very helpful, in his opinion (and I would agree with him from my experience) "they have become so pro forma and bureaucratized that in terms of recipient benefits, they pay back only a small fraction of their enormous costs." I used to refer to the numbers of people who offered little input while maintaining their employment doing non-functional assistance work as the "uh-oh squad" - like those who stand around wringing their hands after an accident while the paramedics do their work. Wolf allows that the work of case management and individual program planning can continue on an unpaid voluntary basis as has been the case all along with families and volunteers. Spending countless hours filling out paperwork to justify provisions for a child with a handicap, and other examples of "bureaucratism" are cited as more unproductive time spent at a cost that might become unjustified, only in an economy of cutbacks. Wolf comments also that low-validity, nonprogrammatic and other unproductive activities may continue to be funded even while there are people left without ESSENTIALS. Wolf actually suggests civil disobedience in response to costly bureaucratism imposed from above in the federal-state-municipal-funder hierarchies: "One substrategy is to lobby for legislative relief, and another is to practice resistance and outright noncompliance as long as possible." (p. 154)
2. cut the funding of the more expensive operator(s) when there is a choice between two services that are "pretty much the same".
This seems like a no-brainer to me, and it boggles the mind that it would have to be stated. I guess, in New York, there is a very large state system and fewer non-profits than would be the case here in Ontario. Wolf notes that privately run services can change and reconfigure more quickly and less expensively than government ones. I think that Ontario has done well in developing its non-profit sector, however, my observations suggest that the same thinking can be applied within the non-profit sector, where some organizations are well advanced beyond others, and even between the non-profit and private-operator system in some instances, where better service, better responsiveness and less expense can be found in certain experienced "for-profit" operators than in the surrounding non-profits.
3. Get ready for another "sacred cow" to be sacrificed on the altar of cutbacks - Wolf suggests cutting funding for services that are, or come close to being, luxuries. In this he cites examples of questionable use of "service dogs" and the support structures that go with provision of them to people who are neither "blind, deaf or halt". Another example: helping people with profound physical disabilities to climb mountains, go skydiving - planned for from personal futures plans about "dreams" and "visions" and "egged on by advocates and service workers..." (p. 155) Even if they are paid for by raised funds, or private funders, Wolf bemoans the expenditures which he says should be spent on basics for people.
4. Another no-brainer in my opinion - we should cut down on extravagant salaries - which do exist even in human services, mostly in administrative and health care positions. Wolf suggests there might be a desirable side-effect too, if one of the administrators earning such a high salary might quit the field if the salary is cut to a more reasonable level - "then the people served might actually be better off..." Okay, Wolf, tell us what you REALLY think about administrators! Wolf includes overly rich retirement (pension) plans that allow early retirement at close to one's peak earning potential, which he refers to as an "incentive to retire very early and then take on a different job in human services at about the same pay as one's old job, and live excessively from the combination of one's pension, new salary, and eventually perhaps even a second pension on top of Social Security income..." (p. 155). A parting shot from Wolf on this one - "Exorbitant incomes in any field are particularly scandalous if the service recipients are overwhelmingly poor, as is the case in our field, welfare, and a few other fields and services..." (p. 155)
More on what Wolf would "cut" to survive in an era of shrinking resources in my next Blog.
Tuesday 1 June 2010
Part 2 of my Musings on Wolf Wolfensburger's article "How to Comport Ourselves..."
In his article in AAIDD's "Intellectual and Developmental Disabilities", volume 48, No. 2, pp 148-162, Wolf predicts what others too have been saying: "One day, the reckoning will arrive...In essence, our progeny will pay for our profligacy."
He then paints a picture of how, faced with want, taxpayer revolt, unavailable public money, etc., we can expect to see a number of human service problems: service and related advocacy pitched against each other, competing for remaining funds in an ever-shrinking pool available. This may stoop to advocacy that in making the case for one cause, implies deficiencies in that cause's justifications for funds, or even outright attacking other causes, seen as competition. This can have the effect, in a more and more jaundiced public eye, of tarnishing the whole area and all its individual causes. I have previously commented on this with respect to the animosity in the autism area of human service between groups that practice a "let it be" philosophy, or a philosophy that autism is only a part of the normal human spectrum of individual variation in thinking and intelligence, and groups that practice a "let it be cured" philosophy, or one that wants to invest money, effort and time into various biomedical and psychoeducational efforts at "eradicating the disease". By fighting with each other so publicly, they confuse the public, and let people "off the hook" from offering support where it is needed. Wolf's example is of the area of cancer research, where "the lung, bladder, brain, and other organ-centred cancer organizations" (in the U.S.A.) "are at each other's throats, trying to take money away from each other, as a result of which funding becomes arbitrary and irrational." (p. 151) which Wolf refers to as "let the devil take the hindmost..."
Wolfensburger also reminds us of the abstract of his 1992 plenary address to the Association, published in the February 1994 journal, then called "Mental Retardation" (p. 19), which he accurately suggests "probably set a record for brevity for the journal: "The world is going to hell in a wheelbarrow, and this is not going to do retarded people any good". For those who aren't "in the know" Wolf has always refused to "politically correct" his language, and has continued to use the term "mentally retarded" and "retarded", even now. He has given his reasons in full for this, and although many disagree with him on this very point, he does argue well, and nobody has ever accused Wolf of failing to support and champion the rights and interests of people with developmental disabilities. The man who, along with Bengt Nirje, gave us (in North America) the "principle of normalization", and who now advocates "social role valorization" for people who are at risk of any form of marginalization, can be quite stubborn!
In addition to reminding us that he cautioned us then, nearly twenty years ago, about the coming collapse of banks, credit systems and insurance, as well as private pension funds, and about the increased "deathmaking" he decried, he also admonished us not to trust government because "it habitually lies". He also coined a new term, "insanicerated", meaning "made crazy and insane" which he applied to "people of the culture of modernism, including academia, scholarship, the research culture, the professions, and professional and scientific organizations" - such that "unpleasant truths are not and cannot be dealt with..." He says everything except maybe 'I told you so' - to his credit, of course. EVERYBODY hates that!!!
In his "pre-mortem" on our society, Wolf does comment on those who might be spared, at least in the beginning. This includes services that are totally or substantially subsidized by other bodies (he refers primarily to federal programs), such that parts of the economy are "making money" from them; programs that were generated in response to court decrees or lawsuits might be protected; programs that are protected by strong advocacy lobbies with many voting constituents - which does not usually include advocacy lobbies within intellectual and developmental disabilities - but he cites AARP (American Association of Retired People) and the hospital and nursing home lobbies; "services that thrive on the anxiety of people who still have money"; those who are paid for service to their clients and who have some form of workforce protection.
Never one to simply decry how bad things are, Wolf does offer some suggestions for thinking "rationally, strategically, and ahead of time about (a) what to propose to our funders, and (b) what we can do that is in our power to get the most service value for the dollar." He says we "need to develop a cost/yield mentality" be prepared to ask ourselves tough questions, develop a mentality of parsimony ("holding costs down while still meeting the most pressing needs"), and "need to evolve a relatively united front, with shared strategies, or the government will play one party against another, and beat both down". (p. 152)
In my opinion, Wolf is absolutely correct in predicting that if we fail to do these things, "cuts will be made capriciously by ignorant, partisan, irrational and unstrategic parties, and any number of patterns of cuts can leave vulnerable people far worse off than if the same amount of cuts had been made rationally". (p. 153). Such has been my experience, and 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.
In my next blog, I will review Wolf's proposals, and while I am reading and reviewing his article, I am getting some ideas of my own, for the Ontario situation, that might meet many of his criteria for parsimony, collaboration, united front advocacy, shared strategies, and stretching government and other funder dollars further.
He then paints a picture of how, faced with want, taxpayer revolt, unavailable public money, etc., we can expect to see a number of human service problems: service and related advocacy pitched against each other, competing for remaining funds in an ever-shrinking pool available. This may stoop to advocacy that in making the case for one cause, implies deficiencies in that cause's justifications for funds, or even outright attacking other causes, seen as competition. This can have the effect, in a more and more jaundiced public eye, of tarnishing the whole area and all its individual causes. I have previously commented on this with respect to the animosity in the autism area of human service between groups that practice a "let it be" philosophy, or a philosophy that autism is only a part of the normal human spectrum of individual variation in thinking and intelligence, and groups that practice a "let it be cured" philosophy, or one that wants to invest money, effort and time into various biomedical and psychoeducational efforts at "eradicating the disease". By fighting with each other so publicly, they confuse the public, and let people "off the hook" from offering support where it is needed. Wolf's example is of the area of cancer research, where "the lung, bladder, brain, and other organ-centred cancer organizations" (in the U.S.A.) "are at each other's throats, trying to take money away from each other, as a result of which funding becomes arbitrary and irrational." (p. 151) which Wolf refers to as "let the devil take the hindmost..."
Wolfensburger also reminds us of the abstract of his 1992 plenary address to the Association, published in the February 1994 journal, then called "Mental Retardation" (p. 19), which he accurately suggests "probably set a record for brevity for the journal: "The world is going to hell in a wheelbarrow, and this is not going to do retarded people any good". For those who aren't "in the know" Wolf has always refused to "politically correct" his language, and has continued to use the term "mentally retarded" and "retarded", even now. He has given his reasons in full for this, and although many disagree with him on this very point, he does argue well, and nobody has ever accused Wolf of failing to support and champion the rights and interests of people with developmental disabilities. The man who, along with Bengt Nirje, gave us (in North America) the "principle of normalization", and who now advocates "social role valorization" for people who are at risk of any form of marginalization, can be quite stubborn!
In addition to reminding us that he cautioned us then, nearly twenty years ago, about the coming collapse of banks, credit systems and insurance, as well as private pension funds, and about the increased "deathmaking" he decried, he also admonished us not to trust government because "it habitually lies". He also coined a new term, "insanicerated", meaning "made crazy and insane" which he applied to "people of the culture of modernism, including academia, scholarship, the research culture, the professions, and professional and scientific organizations" - such that "unpleasant truths are not and cannot be dealt with..." He says everything except maybe 'I told you so' - to his credit, of course. EVERYBODY hates that!!!
In his "pre-mortem" on our society, Wolf does comment on those who might be spared, at least in the beginning. This includes services that are totally or substantially subsidized by other bodies (he refers primarily to federal programs), such that parts of the economy are "making money" from them; programs that were generated in response to court decrees or lawsuits might be protected; programs that are protected by strong advocacy lobbies with many voting constituents - which does not usually include advocacy lobbies within intellectual and developmental disabilities - but he cites AARP (American Association of Retired People) and the hospital and nursing home lobbies; "services that thrive on the anxiety of people who still have money"; those who are paid for service to their clients and who have some form of workforce protection.
Never one to simply decry how bad things are, Wolf does offer some suggestions for thinking "rationally, strategically, and ahead of time about (a) what to propose to our funders, and (b) what we can do that is in our power to get the most service value for the dollar." He says we "need to develop a cost/yield mentality" be prepared to ask ourselves tough questions, develop a mentality of parsimony ("holding costs down while still meeting the most pressing needs"), and "need to evolve a relatively united front, with shared strategies, or the government will play one party against another, and beat both down". (p. 152)
In my opinion, Wolf is absolutely correct in predicting that if we fail to do these things, "cuts will be made capriciously by ignorant, partisan, irrational and unstrategic parties, and any number of patterns of cuts can leave vulnerable people far worse off than if the same amount of cuts had been made rationally". (p. 153). Such has been my experience, and 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.
In my next blog, I will review Wolf's proposals, and while I am reading and reviewing his article, I am getting some ideas of my own, for the Ontario situation, that might meet many of his criteria for parsimony, collaboration, united front advocacy, shared strategies, and stretching government and other funder dollars further.
Reading Wolf Wolfensburger "How to Comport Ourselves in an Era of Shrinking Resources"
How to Comport Ourselves in an Era of Shrinking Resources
Issn: 1934-9556 Journal: Intellectual and Developmental Disabilities Volume: 48 Issue: 2 Pages: 148-162
Authors: Wolfensberger, Wolf
Article ID: 10.1352/1934-9556-48.2.148
Like most of what I have ever read, listened to, or seen from Wolfensburger, this article contains WAY more than what initially appears, even when one concentrates and reads for meaning.
To begin with, this article decries the "coming" state of affairs. For some, this will be entirely familiar, as it will only represent a larger scale version of their current experience. For others, though, Wolfensburger will once again be branded a "heretic" - but from his comments, he finds himself no stranger to this, and even refers to himself as a "pariah" after comments he made in 1976 and later again 1992.
For sure, the guy doesn't mince words, and his sarcastic and highly evocative observations of those who run this show we call "post-modern society" and especially too those who I have heard others call "PLODs" - People who Live Off Disabilities - make one chuckle at the same time as one tries not to despair.
Wolf really knows how to lecture, something that is in some ways an art form that is in grave danger of dying, in this world of short sound bites and tweets, where if you can't say it in a sentence or two, you've lost your audience already. It helps that he numbers his paragraphs and points. He gives us eight reasons, for example, why we should expect that economic recovery will not occur, or will not last long if it does. I'm thinking that a few of his reasons are more along the line of decrying the moral decadence Wolf sees in post-modern society (not that I disagree with him), since I'm not sure these have any bearing on an economic recovery - items f and g particularly, where he talks of "an increasingly decadent, nonfunctional and bureaucratic society, with ever fewer functional systems and people in it"; and "an increasing sentiment to make medically dependent people dead...". The scariest, though, of his reasons, (e) talks of an increasingly sick, elderly and dependent population...By 2050, the elderly are predicted to be almost 30% more of the population than young children...no amount of bail-out money can overcome this demographic reality!" (p. 149). This I know has solid empirical grounds and economists certainly speak of the effects of this demographic imbalance with some concern for those who are dependent upon the state for support. This will include today's parents and many current taxpayers. Alas, it may not include me, as I will be 98 if I make it to 2050.
Wolf then talks about borrowing money from other countries and future generations, and how the US is squandering its future with bailouts to ne'er-do-wells, selling infrastructure and means of production to foreign countries, how Social Security is a big "Ponzi scheme", and "more of the same" attempts at solutions.
In great understatement and wry humour (though sarcastic) Wolf states that he doesn't see "any sign that the different interests in society and human services are willing to acknowledge that major sacrifices will have to be made on everybody's part, though there has been plenty of willingness to sacrifice other people's interests" (p. 150).
Wolf also observes that "interest groups" are more inclined to hold rallies to "protect their jobs" than to advocate for the "people they serve".
As if getting more bitter and sarcastic with each passing word written, Wolf writes "Some people would rather sacrifice a few dozen group homes than their enjoyment of a live symphony performance, or the display of unintelligible or morally offensive paintings or sculptures." (p. 150)
The worst part of all, is that like always, Wolf is just serving up the truth as he sees it, and he does so without denial, obfuscation, mincing words, or using what he refers to as our human tendency to deceive ourselves.
More on Wolf's article (the impact on human services and his prescriptions for change) in the next instalment of my blog.
Issn: 1934-9556 Journal: Intellectual and Developmental Disabilities Volume: 48 Issue: 2 Pages: 148-162
Authors: Wolfensberger, Wolf
Article ID: 10.1352/1934-9556-48.2.148
Like most of what I have ever read, listened to, or seen from Wolfensburger, this article contains WAY more than what initially appears, even when one concentrates and reads for meaning.
To begin with, this article decries the "coming" state of affairs. For some, this will be entirely familiar, as it will only represent a larger scale version of their current experience. For others, though, Wolfensburger will once again be branded a "heretic" - but from his comments, he finds himself no stranger to this, and even refers to himself as a "pariah" after comments he made in 1976 and later again 1992.
For sure, the guy doesn't mince words, and his sarcastic and highly evocative observations of those who run this show we call "post-modern society" and especially too those who I have heard others call "PLODs" - People who Live Off Disabilities - make one chuckle at the same time as one tries not to despair.
Wolf really knows how to lecture, something that is in some ways an art form that is in grave danger of dying, in this world of short sound bites and tweets, where if you can't say it in a sentence or two, you've lost your audience already. It helps that he numbers his paragraphs and points. He gives us eight reasons, for example, why we should expect that economic recovery will not occur, or will not last long if it does. I'm thinking that a few of his reasons are more along the line of decrying the moral decadence Wolf sees in post-modern society (not that I disagree with him), since I'm not sure these have any bearing on an economic recovery - items f and g particularly, where he talks of "an increasingly decadent, nonfunctional and bureaucratic society, with ever fewer functional systems and people in it"; and "an increasing sentiment to make medically dependent people dead...". The scariest, though, of his reasons, (e) talks of an increasingly sick, elderly and dependent population...By 2050, the elderly are predicted to be almost 30% more of the population than young children...no amount of bail-out money can overcome this demographic reality!" (p. 149). This I know has solid empirical grounds and economists certainly speak of the effects of this demographic imbalance with some concern for those who are dependent upon the state for support. This will include today's parents and many current taxpayers. Alas, it may not include me, as I will be 98 if I make it to 2050.
Wolf then talks about borrowing money from other countries and future generations, and how the US is squandering its future with bailouts to ne'er-do-wells, selling infrastructure and means of production to foreign countries, how Social Security is a big "Ponzi scheme", and "more of the same" attempts at solutions.
In great understatement and wry humour (though sarcastic) Wolf states that he doesn't see "any sign that the different interests in society and human services are willing to acknowledge that major sacrifices will have to be made on everybody's part, though there has been plenty of willingness to sacrifice other people's interests" (p. 150).
Wolf also observes that "interest groups" are more inclined to hold rallies to "protect their jobs" than to advocate for the "people they serve".
As if getting more bitter and sarcastic with each passing word written, Wolf writes "Some people would rather sacrifice a few dozen group homes than their enjoyment of a live symphony performance, or the display of unintelligible or morally offensive paintings or sculptures." (p. 150)
The worst part of all, is that like always, Wolf is just serving up the truth as he sees it, and he does so without denial, obfuscation, mincing words, or using what he refers to as our human tendency to deceive ourselves.
More on Wolf's article (the impact on human services and his prescriptions for change) in the next instalment of my blog.
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