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Roger N. Meyer "...of a different mind "
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I "take my colleagues on"

Copyright 2003 Roger N. Meyer

Notes 2005




     [This article is an expanded version of a response to a post on a persons with disabilities self-employment list serv maintained by Virginia Commonwealth University as a part of its Diversity World program.  The list is composed mostly of professionals in vocational rehabilitation, career development, disability rights agencies and a few independent mavericks like me.  I wrote this post shortly following a two-day fair hearing in which I contested my vocational rehabilitation service's denial of technical supports needed to establish my own consulting firm.  I lost the hearing.  My P&A attorney who was the VR Client Assistance Program lawyer asked me whether I would appeal. I said, "No.  Things have gone far enough."  A list member asked about work incentives connected with Social Security that would allow individuals to work and still not lose their benefits.  He also asked about how receptive vocational rehabilitation is to the idea of self-employment.  The questions really got me going.


     The reader should bear in mind that I've made a personal choice to interface with "the system" in my own way in order to effect system change.  To some of us with Asperger Syndrome, I've joined "the enemy" and am part of the problem, not part of the solution.  When pressed to expand on their concept of a solution in which they play an active and sustained role, they can't.  Fine.  Reactivity is one thing.  Pro-activity is quite another.   Please note that I've personalized things here, because when you get down to it, individual choice-making at this level does get up close and personal.]



Work Incentives and the Social Security Roach Motel


     Surprising as it may be to some folks, if one has a good work record and decent income before becoming eligible for SSDI, the disability award may be substantially higher than the maximum amount allowed to take any advantage of most if not all work incentives offered by the system.  So, you "earn" during your TWP (Trial Work Period), but as a result of your success, you lose.  You lose big time.  In my state, Oregon, I believe the state adds only one dollar to the Federal pass-through for SSI.  Oregon is a pilot project state for several programs, including being among the first batch of 13 Ticket To Work states and one of three or four Medicaid Waiver states. (1)  We have "innovation" writ large on the grant awards and on the federal paperwork.  We have yet to "produce" meaningful results in the field, with real people, for all of that money and all of that time we are now being paid as a state.


     My own case provides a personal illustration of built-in barriers that come with the system.


The Medical Model of Rehabilitation


     As a result of a life-long career in the blue collar crafts, my life earnings were substantial.  When I abandoned the trade after 26 years and decided to do a complete paying-career change, I found little support by VR and other supposedly helping agencies even once the debilitating nature of my own disability became quite obvious.  Providers remained stuck in a model based upon low expectations and heavily influenced by the DSM-IV, a completely inappropriate "add on" to what could have been an enlightened rehabilitation paradigm had it not come along in the late sixties and driven the engine of the VR model at that time and since.  No one can tell me that the DSM doesn't sit as a waterlogged snag on the entire rehabilitation scene.  It is taught as gospel in the CRC (Certified Rehabilitation Counselor) course sequences; it is heavily emphasized in course work leading to the MSW with the expectation that many MSW's may go on to become clinical licensees.  It forms the platform for diagnosis in psychiatry and clinical psychology.  It determines who is eligible for services and who isn't.


     If counselors and therapists look forward to making money from third-party payers, their initial course and degree work must emphasize the medical model of disability.


     The medical model is pervasive.


     The medical model is wrong.


     In major metropolitan population centers and heavily urbanized states, vocational rehabilitation clients have their cases framed starting with what they can't do rather than what they can do.  Vocational rehabilitation as taught and practiced depends for its very survival upon a system of providers and a group of beneficiaries.  Even changing the term to "consumers" or "participants" doesn't alter the fact that the model for evaluation and the benchmarks of client success and progress with their individualized plans of employment (IPE's) is fraught with the vocabulary of medicine and and psychobabble.


     The traditional vocational rehabilitation model is not a mentally healthy one to begin with.  It is less so because now we can't hide behind what has been documented as the effect of labeling and institutionally-bound rejection of whole classes of persons based upon that labeling.


Our Ethical Dilemma


     Here I'm speaking as a person who is very much a part of this problem paradigm.  In order for me to help some of my own clients, I first have to interact in a system many of whose practices are abhorrent to me.  With its "nod-nod/wink-wink" relationship between VR counselors and consultants, conversations inside invariably take on the element of "us versus them" thinking.  If you consider the formal mission statements of VR services and many providers, we aren't supposed to engage in this kind taking of sides or secretive side-discussions when Congressional mandates call for client informed consent and their active participation not only in setting their goals, but also in managing their cases along the way to achieving those goals.


     Some of us think we can bypass lazy, stereotypical thinking by using the new "systems change" buzzwords.  So, we use those enlightened catch phrases when with our clients.  But listen to our hall talk, our schmoozing with our colleagues.  A different language, the same-old, same-old dynamic of folks who dollop out knowledge and dollars to a dependent, desperate client base.  They must be "deserving".  They must "qualify", they must "be compliant" and "remain on task".  These are all terms that reek of control.  They are all terms that reinforce power differentials, "we know better" professional arrogance, and distance from our clients.  We use the medical terms; we isolate ourselves from our clients as sentient, passionate beings.


     Ask yourself how the real world, the world of non-human-service folks considers such words.  They are words distinguishing first class citizens--people like us--and second or third class persons like them -- clients.  No matter how we rephrase it, no matter the buzzwords of the decade, people really do know that these are just empty words.  The system hasn't changed.  Mission statements have just changed to be more politically correct.  However, since the paradigm really hasn't shifted and our behavior and that of our agencies really hasn't changed, these terms, corrupted from their initial meanings in person-first culture, have become even more "new-speak", more unreadable, and ultimately, more disjunctive with what we continue to do.


     No wonder our sharper clients are also properly cynical and suspicious of our motives.


     They have every reason to be.


     So, we're not just dealing with something that's incidental or, for the enlightened, a bothersome small detail.  We know what we're doing, and there's the rub.  The medical paradigm of "dis" ability informs the entire rehabilitation and human services structure except for the few contrarian-thinking institutions, such as the University of Montana's Rural Institute, and the Virginia Commonwealth University's Rehabilitation Research and Training Center on Workplace Supports.


     A handful of folks have found out how to work the levers and push more than one button at a time to hit the jackpot.  For the rest of "us" it's more of an uphill battle.  In fact, it may be the "wrong battle" to fight.  We think we may have the new, the right keys to open old doors or let ourselves into new spaces, but then we discover that someone forgot to change the locks.


     Or did they "just forget"?


     No, they didn't.  Despite their assurances otherwise, they are mired in a system built on the wrong values.


     So, what to do?


Moving the Mountain


     This self-employment list is a part of the "what".


     Until some of us in the field, working in collaboration with our clients, can start to move the mountain -- because indeed the mountain must be moved -- there is little likelihood of our clients feeling as though the system--one they encounter daily -- is open to their overtures and their hopes.  In the instance of something as attractive to naive and unprepared clients as SSI and SSDI, it doesn't take too long a period of economic dependency on a "wrong model" for beneficiaries to become cynical and self-debasing.  That is especially true if they've started out hopeful that the source of their sustenance is supportive of independence and self-sufficiency.


     The truth of the matter is, for the majority of people interfacing the system, that it isn't.  I believe we do our clients great disservice with our bushy-tailed optimism, setting them up for disappointment and perhaps later frustration than they'd feel were we not there at all for them.  Much as we'd rather not be reminded so frequently, we're human as well.  We have finite patience, finite resources, and finite capacity to fight the battle, both for ourselves and for every client.


     And we get worn down as well.


     For me, the good fight is an individual one, a very personal one, one with names and faces, with people and places, engaging one client and "the system" on step at a time.  It keeps me clear.


     That's my choice, and it's up to every person to individually make their own decision about how they wish to go about systems-change.


     Of course, my choice keeps me poor.  I don't have an overwhelming caseload because I have chosen to "go private".  Because of the way I operate, I would be a terrible agency employee, and I know that.  Incidentally, I'm doing what the experts said couldn't be done because the very reasons I qualified for SSDI meant that as far as SSA is concerned, I'm not capable any longer (get it, any longer!) of substantial gainful employment.  I know it sounds Pollyanna-ish, but I believe there's more to "gainful employment" than an annually-established monthly figure measured only by dollars.  According to SSA, if I proved to them that I was capable of earning a much lower amount monthly than what I now receive on SSDI, I'd lose my "nearly double that" SSDI benefits.  Although I'm about to have Medicare extended to me, that coverage is substandard at best, even with supplemental coverage available on a continuing basis from my present healthcare provider.


     So, here's my bottom line as a disabled person:  I fare better not even getting within spittin' distance of VR or SSA with any of their work incentives programs.  That's because I happen to be lucky enough to be among the more substantial past-earners now on SSDI.  I've also identified a niche market broad enough to be served by generalists such as myself who act like bird dogs hunting down a combination of conventional and completely off the wall resources for my clients.


     Because the work I do straddles a number of areas of professional expertise, I'm considered as somewhat of a pariah, a threat reminding those whose specialized knowledge keeps them from really extending themselves on behalf of their clients, whose specialized-mission agencies policy or service parameters tell them they "can't do that."


     Well, I can.


     I have to think of all kinds of creative book keeping just to keep my expenses manageable while providing intensive case management at an affordable level to my clients.  I under-bill like crazy.  I do a lot of work as a volunteer -- same work, different hat.  That pumps my reputation up in the special disability community within which I operate, but it sure doesn't put more beans on the fork or allow me to save for my retirement.


     What is ironic is that even if I were eligible for any of those incentive programs that allowed me to stay connected to the SSA cash umbilical cord, none of them would allow me to save enough money in any business plan for retirement.  In fact, retirement "savings" are off the radar for any of federal government financed self-employment "assistance" programs.


The System's Obsolescent Notion of Entrepreneurial Enterprise


     In practical terms, in most major metropolitan areas of this country, most career or vocational specialist's poor knowledge of how to help a client craft a winning business plan to take a workable proposal to the private lending market is a major, documentable scandal.  Micro enterprises are on some professionals' radar, but not full-blown "let's go for real" ones.


     Having been the route of the meager technical assistance endorsed by vocational rehabilitation, I can assure you that imagining an unconventional human services for-profit venture wasn't on the radar of any small-business consultant I ran across.  The model for self-employment in the minds of any receptive large-city business consultant is based upon manufacturing, or the traditional services industry (with its niche markets), or some type of sales or commodity sales scheme.  No consultant I met with -- some on my own time and money, and several from the "free" list maintained by vocational rehabilitation -- understood the components of the new career I was designing for myself.  It wasn't in the books.  It wasn't in the Dictionary of Occupational Titles.  It wasn't in O*Net98, a very good career-planning tool that I had mastered out of an interest of helping others with more traditional career plans.  [I'm now glad to see that this tool, originally charged for although it was created exclusively with our tax dollars, is now available free of charge to all users on the Internet. (2)]


     The one thing I couldn't convince vocational rehabilitation to consider was the kind of technical assistance many small businesspersons rely upon, often through informal sources.  That technical assistance was in the areas of management consulting, financial planning, business plan consultation, and marketing.  Since I didn't have such informal sources available to me, my requests that VR "buy" them fell on deaf ears.  That isn't a surprise in view of the fact that not a single VR professional I dealt with had ever worked in small business, had ever been self-employed, or knew how to create a business plan.  The last time they marketed anything was when they hustled their own civil-service jobs.


     In bumbling into my own business, I discovered that many businesses have "management consulting" built into their start-up and their long-term business plans.  Sole proprietors do that informally, as many of us budget time and money for management consulting "check ins", especially as our businesses grow.  Management consultants keep us on target, keep us aware of changes in a world we're often too busy to notice because we're so involved with the day to day details of keeping our head above water.  What was ironic about the kind of technical assistance I was requesting of VR was that government agencies have entire management structures and divisions that provide such technical services built into their bureaucracies.  Without them, they'd collapse.  Because civil servants such as VR counselors have such balkanized job descriptions, they may not be expected to understand these management functions in order to do their jobs.  My question to them, however, was, "What is your job, and what is your obligation to your clients who have these notions of self-employment as an employment outcome?"  When finally pressed for answers at my hearing, not a single branch manager or VR professional had an answer to this question.  It didn't make any difference to them, or to the system that they operated in, that the question was being asked by my attorney, and before an administrative law judge.  [I might add that the ALJ did not understand federal directives or policy guidance information on self-employment either.  That was apparent from his decision.]


     So why should the VR system expect its clients interested in self-employment to buy into a 19th century model of agrarian self-sufficiency?  For the very same reason that its definitions of employment outcomes are based upon the Dictionary of Occupational Titles, an out-of-date tome abandoned by the US Department of Labor as a document impossible to update given the sea-change of the economy of the early 1990's that bore no resemblance to a manufacturing and agrarian economy of the depression-dominated 1930's, when the DOT was first created.  That's why.


Inertia and its Effect


     Problem is, there are very few persons in positions of power and influence in state VR agencies who understand the idea of meaningful--not token--self employment.  The whole structure of the system militates against it.  First of all, if clients were successful in pursuing their non-traditional outcomes, their success might start to reduce case loads.  Smaller caseloads caused by successful and satisfying case closures might cause university departments of rehabilitation education to re-think their core curriculum built on the medical model of pathology, disability, disorder, disease, and dysfunction, a very daunting and scary prospect in the only major cultural institution, other than the Catholic Church, that has remained essentially unchanged since the middle ages.  Secondly, what about those persons sitting at their desks, warming their chairs, manipulating the numbers waiting for time to pass until their retirement from the civil service?  It is indeed tragic that many professionals, despite their best intentions when they first start out in the field, are made ciphers by the very system they work under.  I don't blame them.  I do fault the system, and to a certain extent, an entire training and continuing education model that supports that structure.


     In their professional development workshops, the words are there, the pilot projects are trotted out as best practices, yet returning to the low red brick or concrete tilt-ups, folks who've just "continued their education" feel enthused and invigorated.  The feeling doesn't last as one by one their enthusiasm is ground to bits by the inertia of their agencies and by the fears of their co-workers who didn't attend the training.  They fill in their monthly or quarterly progress reports.  They lunch and coffee klatch for awhile, excited by a new idea, an idea unrealizable in a hostile, sterile system characterized by unimaginative thinking, survival-mode mentation and crisis management mentality concerns about staff reductions in an era of shrinking state budgets.  No matter that eighty percent of the VR budget in the states is paid for directly by the federal government.  The Rehabilitation Services Administration, funder of these show-and-tell projects, actually shows little "put your money where your mouth is" interest in the long-term success of any of the pilot projects it funds.  So, nothing changes.


     That's the real bottom line, folks.  Nothing changes.


     I hope subscribers on this list don't go down a self-deluded rosey path thinking that change will be easy.  The only thing most of us can expect to find at the end of that path is a brick wall and moss on the flagstones.  It will always be there.  The question is, what can you as an individual do about this phenomenon?  It's built into your job descriptions.  How are you going to deal with the ethical challenges the system places in your path and the paths of your clients?


For you Policy Wonks and Systems Folks:  A special challenge


     I'd like to see more discussions about alternatives that not only work, but alternatives that have been accepted wholesale, ideas that actually lead to re-arranging the human warehouse we call the vocational rehabilitation system.  I challenge all of us to think and act out of the box and to sustain our efforts in the face of unprincipled, deadening inertia in our agencies and amongst ourselves, as "providers".  I'd like this forum to be a place chronicling the effect of surprises that catch the system sleeping, then awakening, and finally embarrassed into responding to real needs to "cases" as real people.


     I'd like to read good news.  News written with this century in mind, news read with new lenses and news of new tools for the future.  The same-old, same-old we've all come to expect, let's not go there.  Others can write from positions of reactivity and in defense of tools and thinking now two centuries old.


     That shouldn't be us.




1.  At the time of this article's initial publication, the Ticket to Work program was widely regarded as a failed program, a victim of deliberate undermining by its sponsor agency -- SSA -- its wholesale rejection by SSA beneficiaries, and discounted by public policy experts who weren't a part of the "inside crowd" bent on congratulating themselves regardless of how lousy the outcome.  Among consumers and independent observers, there was widespread perception that the program was an "insider job" boondoggle benefiting the same tired actors whose misadventures and long-term survival despite repeated poor outcomes of other program monies being thrown at them by the same funding streams, local and national, were well known "on the street."  Two years later, it is even more of a failed program.  Original perceptions by disinterested observers apply even more today, confirming critics' concerns that failed programs have a unique staying power within some government bureaucracies, whereas new, successful programs represent a profound threat to career bureaucrats bent upon preserving the status quo.  In a recent semi-annual conference of National Organization of Social Security Representatives (NOSSCR) in Washington, D.C (Spring, 2005), Social Security Commissioner Joanne Barnhart, addressing over a thousand members, said that fixing the Ticket to Work program is low on her personal list of priorities for the Social Security Administration.  For the forseeable future, money, time, and upgrading will all be dedicated to the digital and electronic conversion of written records, hearings, and appeals.


2.  Not satisfied with merely privatizing and contracting out entire government functions and hiding previously publicly viewable and accessible US government documents, the Bush administration decided to take its own US Department of Labor's career exploration program, O*Net98, completely private as well, though it was developed with US Tax dollars.  Alas, the program and its updates are no longer available for free.  In its promotional literature, there is hardly a mention of the public-private partnership, all tax-paid, that led to its existence.


Copyright Issues


This article is copyright, all rights reserved by the author, Roger N. Meyer.  It may be reproduced in single copy once for personal use, and in no more than ten copies total for educational purposes.  Fair Use is authorized for all purposes and under conditions established by US Statute and the International Copyright Convention, to which the United States is a signatory nation.  No person shall publish, distribute, copy, or by other means make this material available to others for purposes of personal gain or professional self-aggrandizement.  Individuals wishing permission to exercise other than fair use or limited distribution as outlined above must contact the author, in writing, and receive explicit written permission from the author prior to engaging in further use of this material.

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