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.
Thursday, 3 June 2010
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.
Wednesday, 12 May 2010
Thoughts on Wait Lists
I was asked a question the other day, that brings back all the passion and frustration of years gone by. The question was one that had been asked of me thirty years ago, and twenty years ago, and ten years ago, and now.
"How do I get services for my child? I am registered with the local developmental services network case managers, and have completed all the paperwork (and answered all the same questions I have already answered it seems a hundred times). I have been told that I am on the "waiting list" for services. When I asked how long I would have to wait, I was told the wait was "indeterminate". When I asked what the "ballpark" wait time might be I wasn't given an answer by those employed to provide me with support and advice. It took another parent to tell me it could be as long as two years or more. When I looked at my child, newly diagnosed (and that's another story, how long it took, and how much effort was put into, getting that diagnosis - but that's for another time), I thought how much of my precious child's life would be sacrificed to waiting for a service that evidence states clearly should be provided intensively and early - as early as possible. And I cried until my husband came home from work - tears of frustration, and grief, and as an expression of my state of helplessness."
I thought of those who have recently been diagnosed with a life-threatening illness, and how they too are sometimes on a "wait list" for services. How difficult a time in one's life that is, and how dependent one feels, and how grief-stricken, anxious, angry, frustrated, sad, and distressed one can be for the period of time it takes until an intervention starts to take place.
And then I thought of the amount of "wasted" time spent in so many of our "support services", as supply is managed carefully to protect the resources that ARE in existence from being overwhelmed by demand - the time taken so that the politics of the situation can be so carefully managed; the time taken to carefully document the activities that take time to perform, although they may have little to do with direct child- or family-related activity, to provide accountability for a service's existence and to defend the situation that exists - even if that is to essentially defend inactivity (in the clinical sense) and protect against allegations of negligence, when one is powerless through lack of resources to do something effective for those who are applying for service.
In this internet age, I am thinking that these parents are now in a position to know what they need to know so much more quickly, and with so much less effort than was the case at the start of my career, things that were obtained mostly by luck by many families of the past. But I despair that even so, the situation hasn't really changed much for so many families with children who have special needs.
I am even more angered when I see how much money goes into areas of our economy that have very little to do with mutual caring, support and other forms of intervention and support that make this world a better place for those born with less advantage.
Just a rant - I'll shake it off and get back to work now. I recall how one of my social workers at Children's Aid who was talking about getting fatigued from too much demand and not enough energy or support from the system. It's the story about two people standing on a beach, on which are strewn thousands of starfish, left high and dry by the tide going out. Left in the sun, they will surely die. One of the people is taking one starfish from the beach and throwing it back out into the surf. The other is saying "why do you bother, there are thousands of starfish on the beach, and you'll never be able to save them all! What does it matter?" The one throwing the starfish is saying back "it matters to this one".
"How do I get services for my child? I am registered with the local developmental services network case managers, and have completed all the paperwork (and answered all the same questions I have already answered it seems a hundred times). I have been told that I am on the "waiting list" for services. When I asked how long I would have to wait, I was told the wait was "indeterminate". When I asked what the "ballpark" wait time might be I wasn't given an answer by those employed to provide me with support and advice. It took another parent to tell me it could be as long as two years or more. When I looked at my child, newly diagnosed (and that's another story, how long it took, and how much effort was put into, getting that diagnosis - but that's for another time), I thought how much of my precious child's life would be sacrificed to waiting for a service that evidence states clearly should be provided intensively and early - as early as possible. And I cried until my husband came home from work - tears of frustration, and grief, and as an expression of my state of helplessness."
I thought of those who have recently been diagnosed with a life-threatening illness, and how they too are sometimes on a "wait list" for services. How difficult a time in one's life that is, and how dependent one feels, and how grief-stricken, anxious, angry, frustrated, sad, and distressed one can be for the period of time it takes until an intervention starts to take place.
And then I thought of the amount of "wasted" time spent in so many of our "support services", as supply is managed carefully to protect the resources that ARE in existence from being overwhelmed by demand - the time taken so that the politics of the situation can be so carefully managed; the time taken to carefully document the activities that take time to perform, although they may have little to do with direct child- or family-related activity, to provide accountability for a service's existence and to defend the situation that exists - even if that is to essentially defend inactivity (in the clinical sense) and protect against allegations of negligence, when one is powerless through lack of resources to do something effective for those who are applying for service.
In this internet age, I am thinking that these parents are now in a position to know what they need to know so much more quickly, and with so much less effort than was the case at the start of my career, things that were obtained mostly by luck by many families of the past. But I despair that even so, the situation hasn't really changed much for so many families with children who have special needs.
I am even more angered when I see how much money goes into areas of our economy that have very little to do with mutual caring, support and other forms of intervention and support that make this world a better place for those born with less advantage.
Just a rant - I'll shake it off and get back to work now. I recall how one of my social workers at Children's Aid who was talking about getting fatigued from too much demand and not enough energy or support from the system. It's the story about two people standing on a beach, on which are strewn thousands of starfish, left high and dry by the tide going out. Left in the sun, they will surely die. One of the people is taking one starfish from the beach and throwing it back out into the surf. The other is saying "why do you bother, there are thousands of starfish on the beach, and you'll never be able to save them all! What does it matter?" The one throwing the starfish is saying back "it matters to this one".
Monday, 3 May 2010
Dave Hingsburger
I have known of Dave Hingsburger, now, for a little more than 25 years. On Friday and Saturday, Dave came to my home town, Carleton Place, and spoke to us. He didn't talk to us, or lecture to us. He spoke to us. He was originally slated to speak at the Carleton Place Canoe Club, where Dave spoke to us several years ago when he was still able to walk. Instead, we carried on at the Beckwith Township Hall on Friday, and in the Conference Room at Lanark Community Programs on Saturday - because the Canoe Club is still inaccessible and our alternatives to get Dave into the hall were unworkable. The Canoe Club is slated to be completely accessible by March 31, 2011. Our use of the hall helps them raise the necessary capital to put in an elevator. Dave was flexible and gracious as we scrambled and, with the help of some marvellous volunteers from the Mills Community Support Corporation, Jan Watson and Freda Clark, both Team Leaders in their residential services, we started just about a half hour later than anticipated, in an unplanned but totally accessible venue at the Beckwith Township Hall. Other than being unable to eat together at lunch time, this worked out reasonably well. We are fortunate in our small-town/rural settings in Lanark County (about a half-hour to forty-five minutes west of Ottawa) that we can invent solutions so quickly to what for some areas might be insurmountable problems. Cellphones and energetic volunteers made it happen quickly and relatively painlessly. I think I'll tell Dave that maybe we should try an experiment - like the way "Raves" are planned (or maybe, NOT planned, but spontaneous) - but just have Dave go wherever he'd like to speak from, and announce via Twitter, cellphone texts, and emails, the location and what time he will start speaking - and wait for the crowd to show up to hear him.
But that's not what I want to say in my blog. I want to say that I have crossed paths with Dave numerous times - for example, in either 1984 or 1985 (or it might have been 1986 - my memory is not very precise) I was speaking at St. Clair College in Chatham, during their "Winter Workshop Week" which used to be held in February each year - I think it might have been 1984 or 1985, and there was Dave doing a keynote address. In the early 1990's I was managing the Special Needs Unit at the Children's Aid Society of Ottawa, and a number of my staff, foster parents and OPR (Outside Paid Resource) providers were going to hear Dave speaking about Safeguards. I was also speaking a short time later to a group that was using money obtained through running workshops to supply their Sexuality Library with new resources, on the topic of spotting and responding to signs of abuse in people with disabilities. Dave's books and materials were some of the resources that the group purchased with their extra revenue. I was driving to work a few years later and heard Dave on CBC.
This past weekend, I was privileged to once again meet with Dave and listen to him on topics that are not so familiar to North American audiences, certainly not so familiar to us in Southeastern Ontario.
I don't know Dave, personally, very well, but as an observer, over time, of him as he presents himself in his public addresses, I marvelled at how he never seems one smidgen less passionate than I remember him at what must have been nearer to the start of his career. His jokes are never the same (at least to me), his stories never repeated (again, at least to my ears). His MESSAGE, however, has remained as strong and as reliable as ever I recall. He still disarms his audience by his self-deprecating humour, removing the distance between him as a speaker and his audience as human beings; he still reminds us of our humanity, both when we make mistakes, but also when he exhorts us to be better than the system in which we find ourselves. Dave is a masterful storyteller, who through the context that many of us find so familiar, begins to form his point, sometimes predictably, by rising to it as all good stories do. Sometimes the climb is like a hill with plateaus, rising in series until finally, at the top, only then does the view become clear and we can look back down to see where the "stopping off" points have been on our way to "getting it". His earthy way of speaking also communicates directly to those who are spending their time in direct care, whether paid or unpaid.
Dave also points out that many times, what should be so completely obvious, is anything but so. This is a point that Wolf Wolfensburger makes frequently, as well. We humans can, especially when working within formal systems, self-deceive, rationalize and think ourselves away from what is really important, better than anyone, and sometimes those of us inside human service systems do it WAY more than is good for those we serve. Dave encourages us to "Listen Up" and to really SEE, not just look. Dave spoke on Friday of Dick Sobsey's concept of MEETING a person with disabilities, not just "greeting" them. Clearly Dick has had a significant impact upon Dave, as he has for me and for many others who have had the benefit of reading, listening to, studying with him, or otherwise being able to access even just a little of the knowledge that Dick carries with him.
People who came to hear Dave, as must be the experience of nearly everybody who ever has heard Dave over his many years of service (quite a lot of people out there, around the world!) came away inspired, encouraged, positive, hopeful, determined, and informed. Some, I'm sure, with sore sides from laughing more than they might have done within the last many months. But my hope is that they got the point, and they got something else from Dave too - passion that never fades!
Dave even had the graciousness to thank Marjorie Gaw and Garth Teskey, the caterers of both Friday and Saturday. Since they moved their kitchen from Almonte to the Canoe Club to the Beckwith Hall and then Lanark Community Programs, and with no complaints, I think he was right on!
But that's not what I want to say in my blog. I want to say that I have crossed paths with Dave numerous times - for example, in either 1984 or 1985 (or it might have been 1986 - my memory is not very precise) I was speaking at St. Clair College in Chatham, during their "Winter Workshop Week" which used to be held in February each year - I think it might have been 1984 or 1985, and there was Dave doing a keynote address. In the early 1990's I was managing the Special Needs Unit at the Children's Aid Society of Ottawa, and a number of my staff, foster parents and OPR (Outside Paid Resource) providers were going to hear Dave speaking about Safeguards. I was also speaking a short time later to a group that was using money obtained through running workshops to supply their Sexuality Library with new resources, on the topic of spotting and responding to signs of abuse in people with disabilities. Dave's books and materials were some of the resources that the group purchased with their extra revenue. I was driving to work a few years later and heard Dave on CBC.
This past weekend, I was privileged to once again meet with Dave and listen to him on topics that are not so familiar to North American audiences, certainly not so familiar to us in Southeastern Ontario.
I don't know Dave, personally, very well, but as an observer, over time, of him as he presents himself in his public addresses, I marvelled at how he never seems one smidgen less passionate than I remember him at what must have been nearer to the start of his career. His jokes are never the same (at least to me), his stories never repeated (again, at least to my ears). His MESSAGE, however, has remained as strong and as reliable as ever I recall. He still disarms his audience by his self-deprecating humour, removing the distance between him as a speaker and his audience as human beings; he still reminds us of our humanity, both when we make mistakes, but also when he exhorts us to be better than the system in which we find ourselves. Dave is a masterful storyteller, who through the context that many of us find so familiar, begins to form his point, sometimes predictably, by rising to it as all good stories do. Sometimes the climb is like a hill with plateaus, rising in series until finally, at the top, only then does the view become clear and we can look back down to see where the "stopping off" points have been on our way to "getting it". His earthy way of speaking also communicates directly to those who are spending their time in direct care, whether paid or unpaid.
Dave also points out that many times, what should be so completely obvious, is anything but so. This is a point that Wolf Wolfensburger makes frequently, as well. We humans can, especially when working within formal systems, self-deceive, rationalize and think ourselves away from what is really important, better than anyone, and sometimes those of us inside human service systems do it WAY more than is good for those we serve. Dave encourages us to "Listen Up" and to really SEE, not just look. Dave spoke on Friday of Dick Sobsey's concept of MEETING a person with disabilities, not just "greeting" them. Clearly Dick has had a significant impact upon Dave, as he has for me and for many others who have had the benefit of reading, listening to, studying with him, or otherwise being able to access even just a little of the knowledge that Dick carries with him.
People who came to hear Dave, as must be the experience of nearly everybody who ever has heard Dave over his many years of service (quite a lot of people out there, around the world!) came away inspired, encouraged, positive, hopeful, determined, and informed. Some, I'm sure, with sore sides from laughing more than they might have done within the last many months. But my hope is that they got the point, and they got something else from Dave too - passion that never fades!
Dave even had the graciousness to thank Marjorie Gaw and Garth Teskey, the caterers of both Friday and Saturday. Since they moved their kitchen from Almonte to the Canoe Club to the Beckwith Hall and then Lanark Community Programs, and with no complaints, I think he was right on!
Thursday, 10 December 2009
Wednesday, 2 December 2009
Compensation or Remediation?
The argument (or perhaps it is better understood to be a "tipping point" in intervention with people with disabilities) of whether to act to change the person, or act to change the world in which the person operates, has a long history, but it is not often talked about. Parents make the conscious choice to move towards one or the other at different times in a dependent's life. This often causes disagreement with people whose job it is to intervene professionally in that child's (or in some cases, adult's) life. The speech pathologist who wants to continue to work on remediation of a communication problem - and the parent who has decided to just let things be. The orthodontist who wants to continue to work on a person's smile - and the patient (or family member) who decides that s/he has spent enough money on braces. The behavioural consultant who wants to continue to work on reducing ritualistic behaviour and the parent who decides that the ritualistic behaviour is just part of the child's unique character and it is not worth the effort needed to eliminate it from the child's repertoire. The self-advocate who opts out of programs intended to remediate, retrain, rehabilitate or otherwise change him (her),and say, "just accept my differences".
Wolfensburger in his exposition of "Social Role Valorization" (see Wolfensberger and Thomas, PASSING, 1983, for example) talks about "Personal Competency Enhancement" on the one hand (changing aspects of the person to better their "fit" into the world that is), and "Social Image Enhancement" on the other (changing the world in which a person operates to change the "fit" of the world around them). Of course, the processes are complementary, and both are appropriate targets of intervention. Their manual for program analysis of service systems' implementation of normalization goals provides a number of examples of how both processes can be utilized to influence positive outcomes for people.
In my view, all forms of intervention can be subdivided into one or the other of these approaches. Diet and nutrition interventions clearly aim at improving personal competency. Legal interventions to gain access to services act more to change the world ("Social Image Enhancement")in which a person operates.
A professional working with people with special needs may become too focused on their responsibilities to change the person for a variety of reasons. One in particular, it is just downright hard to change the world. So an easier route might be to try to make the person fit better. This has been referred to as the "square peg in a round hole" argument. Just shave off the corners until it fits.
Self-advocates are likely to point out that this is the kind of thinking that led to the development of residential schools in Canada for its aboriginal population. This not only did not work, but has been an embarrassment for government, religious orders that sponsored such schools, and a lasting legacy of disappointment, to say the least, for former students.
For this reason, I have long argued that if a professional fails to address, to the limits of their competence and capacity, BOTH remedial and compensatory approaches in their practice, they are failing their client at some level, and this would constitute unethical practice. Not enough so perhaps to report them to their professional colleges or ethics bodies, but unethical practice nonetheless.
Compensatory practices might be exemplified by admonishing other professionals, school personnel, or residential treatment staff, among others, when those individuals want behavioural conformity from a person with learning disabilities that would be unnecessary in a "normalized" or "valorized" setting. I am less impressed with the person who says, using empirically derived procedures, that they can teach a pigeon to play Mozart, than I am by the person who asks them, with all appropriate sincerity, why they would want to do that.
Wolfensburger in his exposition of "Social Role Valorization" (see Wolfensberger and Thomas, PASSING, 1983, for example) talks about "Personal Competency Enhancement" on the one hand (changing aspects of the person to better their "fit" into the world that is), and "Social Image Enhancement" on the other (changing the world in which a person operates to change the "fit" of the world around them). Of course, the processes are complementary, and both are appropriate targets of intervention. Their manual for program analysis of service systems' implementation of normalization goals provides a number of examples of how both processes can be utilized to influence positive outcomes for people.
In my view, all forms of intervention can be subdivided into one or the other of these approaches. Diet and nutrition interventions clearly aim at improving personal competency. Legal interventions to gain access to services act more to change the world ("Social Image Enhancement")in which a person operates.
A professional working with people with special needs may become too focused on their responsibilities to change the person for a variety of reasons. One in particular, it is just downright hard to change the world. So an easier route might be to try to make the person fit better. This has been referred to as the "square peg in a round hole" argument. Just shave off the corners until it fits.
Self-advocates are likely to point out that this is the kind of thinking that led to the development of residential schools in Canada for its aboriginal population. This not only did not work, but has been an embarrassment for government, religious orders that sponsored such schools, and a lasting legacy of disappointment, to say the least, for former students.
For this reason, I have long argued that if a professional fails to address, to the limits of their competence and capacity, BOTH remedial and compensatory approaches in their practice, they are failing their client at some level, and this would constitute unethical practice. Not enough so perhaps to report them to their professional colleges or ethics bodies, but unethical practice nonetheless.
Compensatory practices might be exemplified by admonishing other professionals, school personnel, or residential treatment staff, among others, when those individuals want behavioural conformity from a person with learning disabilities that would be unnecessary in a "normalized" or "valorized" setting. I am less impressed with the person who says, using empirically derived procedures, that they can teach a pigeon to play Mozart, than I am by the person who asks them, with all appropriate sincerity, why they would want to do that.
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