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Roger N. Meyer "...of a different mind "
Puzzle Pieces Image

POLICY AND PROCEDURAL CONFLICTS IN A

CENTER FOR INDEPENDENT LIVING

Copyright 2000 Roger N. Meyer

Introductory Comment 2005

 

 

     [This is the second of two papers submitted to Western Washington University's Center for Continuing Education in Rehabilitation as a requirement for course completion in my first formal study as a job developer.  Tuition cost for the cost was paid by Oregon's Vocational Rehabilitation Department.  Many of the tasks I describe in this paper were considered "off task" by my VRD counselor.  Ultimately, I took VRD to a State Fair Hearing over my choice to do this work.  I lost the hearing, but continued the work.  So much for the crabbed, low expectations of my counselor, the patronizing arrogance of branch managers and the ignorance of all parties about services self-employment of persons with disabilities.  The reader will note that many elements of what turned out to my multiple roles as a human services professional are summarized in this paper, as well as some early observations about scope of practice, ethical concerns, and my own professional development.]

ABSTRACT

 

    This case report illustrates the person-centered planning role of the Peer Counselor, a new volunteer role established by Portland's Center for Independent Living, the Independent Living Resource Center.  The introduction sets the policy background in place in which this work is performed.  The author raises issues of importance for disability advocacy organizations generally, and CIL's in particular.  Throughout the paper, the tension between CIL philosophy -- which does not support traditional case management in conjunction with person-centered planning -- and the need of the consumer and his existing support system for such case management is explored.  Names of individuals are changed to preserve confidentiality.  In the conclusion to this paper, the author recommends that particular features of case management be added to the peer counselor role in instances where consumers have significant cognitive impairments.

 

POLICY BACKGROUND TO THIS PAPER

 

     Although Centers for Independent Living are partially funded by RSA, their funding from federal sources has been essentially flat for this past decade.  Some state CIL organizations have been successful in augmenting their funding through discretionary state sources, such as disability commissions.  Others, like those in Oregon, have been unsuccessful in turning to the legislature and/or state agencies for additional support.  This is due to successful competition by other organizations for the limited funding available to all adult community service institutions.  Decisions to seek funding from certain governmental or multi-source umbrella agencies such as organizations such as United Way are highly political, and efforts successful in one area of the country may not be successful in others.

 

     An increased demand for their services leaves centers for independent living, once more securely funded, searching for new staff and new staff skills as well as additional moneys.  One solution has been for centers for independent living to seek contracts for services from tax-funded public agencies.  In this regard, these once substantially publicly funded non-profits join in the bidding war for contracts with for-profit agencies and individual contractors.  In seeking such contracts, there is substantial danger that these centers will experience "mission creep" as they move into territory already served by agencies and providers identified by disabled persons as official "barrier organizations" to greater self-determination and independence.  These once "independent advocacy" organizations might find themselves in the position of hesitating to bite the hand that feeds.  How their funding sources affect the extent to which individual staff members can advocate for their consumers is a serious, unanswered question.  How effectively the organizations as a whole can maintain their independence in the face of expectations within the broader disabled community is a question which many managers and boards of directors have yet to seriously ponder.

 

     A second solution to the problem of shortage of qualified staff willing to work for relatively low salaries has been for agencies to turn to community volunteers.  In a population already seriously underemployed and unemployed, disabled clients --"consumers", "customers," "participants"--have been identified and used to supplement staff and contribute much-needed labor to these organizations.  While this is a much older phenomenon among non-profits -- and an acceptable solution to short-term funding gaps or staff shortages -- many centers for independent living have recently taken to requiring a quid-pro-quo of their consumers.  Because of legal and charter restrictions, these agencies cannot formally demand such return of volunteer time in exchange for a free or low-cost service, but the unwritten message to consumers is nevertheless clear.  Those who "return" the favor of service are accorded more favorable access to staff, facilities, and a greater likelihood of possible paid employment.  The extent to which such practices abound are well known among disabled consumers who selectively "shop" for service between these agencies.  Certain organizations have reputations as "users," while others are appreciated for their unconditional offer of service, allowing consumers the unpressured choice of offering time or expertise as they wish.

 

     Had not the current approach of "everyone to work" thinking taken serious hold in legislative and other public policy bodies over the past decade, the possibility of conflicts of interest, abuse of relationships and increased role confusion of all participants in the non-profit disability services environment would be a matter of little concern.  Traditionally, the able caregivers of disabled persons have volunteered their services to disability advocacy and support organizations.  Others not formally connected with a given client have sponsored activities or made monetary contributions to certain programs.  Corporate and other individual donors are in this category.

 

     With increased awareness within the disabled community of its member's pivotal role in the system -- that without them the entire edifice of service organizations would not exist -- disabled persons' identification of their own role in directing services and managing their own public assets has become a serious policy issue.  Initially, the People First movement of the early 1970's with its theme "Nothing about us without us" was taken as a cry for organizing.  As the decades wore on, many supposedly self-directed organizations were exposed for what they were:  organizations steered and directed, as before, by non-disabled, or "emancipated" experts, with little day-to-day input by their disabled membership.

 

     Self-determination led to self-advocacy, but without politically sanctioned power of the purse, disabled individuals remained dependent on decisions and plans made on their behalf by "experts."  During the first years of advocacy, many disabled activists were successfully co-opted into the very organizations they sought to change without the organizations' accountability changing in any material way for their equally disabled but less politically savvy contemporaries.  With the recent passage of national legislation with policy mandates for consumer choice and control has come a clash with traditional client purse-string control by many public and non-profit agencies receiving public funding.  The new legislation calls for a power shift from provider to consumer.  It is not clear, yet, how successful this shift will be, nor has a realistic time frame been put in place for these changes.  Even if recent legislative welfare policy changes had not been made, some fundamental shifts in the economy might have forced a "second look" to the future by managers of disabled consumer services.

 

     The current period of unprecedented economic expansion since 1992 has left many managers and boards of disability advocacy organizations uneasy about the timing of the next downturn.  It has also left them hesitant to put into place changes that could directly threaten their jobs and call their competence and that of their staffs into question.  With the prospect of direct consumer control over their assets and services, agencies have to worry about the real "street value" of what they have to offer.  If more consumers are asked to volunteer time with their agencies, calls for respect, recognition, and reward for serious performance will arise.  The inevitability of this scenario occurring has left many managers and staff persons uneasy.  Downsizing, replacing of higher skilled persons with those of lower skills, piling of added responsibilities on already overworked--and largely untrained--direct service staff is a fact of life in the non-profit sector as much as it has been in the general business sector.  New, pilot, or other experimental programs' tenuous existence -- many dependent upon increasingly shortened grant periods -- threaten the overall quality of service that many agencies can provide.  Finally, recent studies validating the equal effectiveness of peer-provided services in contrast to professional-client services have shaken the sense of security of their jobs -- indeed, the professionalism -- of many direct service staff positions.

 

     Serious policy issues arise from the utilization of a served client base as "free" labor pool.  Because of substantial responsibilities often assigned volunteers, the line between volunteerism and employment is not well drawn, and many agencies find themselves scrambling to formalize policies delineating issues of authority and supervision after the fact, rather than in advance of the use of volunteers.  Boards of directors of many of these agencies are often not well equipped to deal intelligently with many of the ethical and economic issues raised by these common practices.  Indeed, there are serious questions arising over the training and competence of many boards in meeting the new challenges of service organizations over the past decade, even had this newest wrinkle not appeared on the scene.  Boards often leave it to senior managers to sort things out often with the hope that leaving matters formally unresolved by the board will offer managers the necessary flexibility to solve additional management by crisis conditions that afflict their agencies.

 

     One last thing to consider before commencing this report.  Since their inception in the 1960's, centers for independent living have existed to some extent" outside" of the traditional boundaries of disability service institutions.  From the beginning, their strong emphasis on employment of disabled staff has set them apart from many other agencies, including numerous disabled-cause agencies.  Organizations such as ARC and UCP have experienced serious internal struggles over who controls the power in disputes between disabled direct service and support staff and management, and unimpaired staff and management.  Many organizations advocating "on behalf" of the disabled are still run by non-disabled professional medical and certificated experts.  Having "someone in the family" as opposed to being "a person with" are two different things.  Unfortunately, in the world of stereotypes and public images, those "with" often are left in the shadows except when the time comes for trotting them out for legislative hearings and fund raising events.  Add to this basic conflict the new element of power struggles with and by volunteer staffers, and we have the making of a very public revolution in most organizations that have been able to conceal staff/staff conflict.

 

     For the most part, the current staff of the center for independent living at which I volunteer is comprised of persons with disabilities.  The daily challenge I face is in reminding them that as a disabled person, I remain unemployed, yet my "expertise" is every bit as valid as theirs is.  Most if not all of them are not current clients of any entitlement programs.  Many have never been beneficiaries or consumers of those programs, yet they counsel consumers daily whose very lives depend upon the successful negotiation in and out of "the system."  The extent to which they "understand" the systems many of their consumers are a part of is a serious question.  While it is their official job to assist persons towards self-determination and independence, there is a tension between that mission and the daily reality of their actual status as employed disabled professionals.  In joining their ranks as an unpaid volunteer, I must constantly question the legitimacy of my agenda and my personal integrity when counseling agency consumers.

 

     It is within this unsettled sea of conditions that the increasing call for use of volunteers in adjunct staff and peer counseling relationships must be evaluated.  By presenting a single case involving a volunteer peer counselor and a regular consumer to a center for independent living, I wish to explore some of the questions opened by this new relationship.

 

ILR VOLUNTEER PEER COUNSELORS

 

An organizational challenge

 

     I was among the first class of persons trained in person-centered peer counseling by the staff of ILR in the spring.  Throughout the summer, most counselors drifted away from the program due to the failure of the center to assign staff supervisors to them and have them work with consumers.  Two trainees were hired as paid staff by ILR, thus ending their status as volunteers.  Without a review of the reasons for the failure of the first class to "take off," the center conducted a second training of a new class of peer counselors in September.  Other than me, no other graduate volunteer of either training has been assigned a consumer caseload.  With neither class has it been possible for the staff person(s) coordinating this program to arrange regular meetings at which volunteer counselors and center staff renew contact with one another.  To put it simply, there is no institutionalized connection, no sense of community, between the volunteers themselves, hence no cohesion or sense of being a team -- either among themselves, or in relationship to the ILR Center.  This lack of community could contribute to unevenness of quality of supervision and erratic service to Center consumers assigned to the volunteer peer counselors.  Unless administrative coordination and direction of the peer-counseling program is established quickly, the fate of the second class of graduates will mirror that of the first.  At this writing, many trained volunteers have faded from the scene due to lack of contact and continuing support by their training agency.  Whether ILR retains sufficient control over its peer counselor supervisors, to say nothing of the peer counselors themselves remains an open question.

 

Person-Centered Planning

 

     The Independent Living Resources Center identifies two broad categories of consumers.  The first are general consumers, who apply periodically or on a drop-in basis for specific assistance or advocacy.  The second class of consumers consists of those involved in an on-going counseling relationship with an assigned member of the staff.  For purposes of tracking direct services delivery and cost reimbursement from RSA, ILR counselors open up an Independent Living Plan (ILP) with their consumers.  This plan is the basis of more intensive, long-term person centered planning and counseling by the staff.  With the training of peer counselors, this RSA-reimbursed direct service can be performed by the volunteer peer counselors under supervision of a paid staff member.

 

     I am the only volunteer peer counselor of all counselors trained by ILR conducting both levels of service with an ILR consumer.  Thus, my services are tracked and the agency is being reimbursed by RSA for each quarter hour of documented, direct service to the consumer.  What I do is subject to far more stringent supervisory potential than casual consumer contact work.  Until very recently, there was no formal PCP training available for either staff or volunteer counselors.  The capacity for that training has been developed internally at ILR since the principal source of PCP training in the State of Oregon has, for the time being, ceased making this critical skill available on a formal instructional basis to human service providers.

 

     Since the later 1960's, I have done casework as an independent volunteer.  I have offered this role coincident with other roles I have served with non-profits.   My style doesn't fit any particular institutional mold.  During supervision, I have been gently chided by my casework supervisors for occasionally operating "outside of the box."  As long as my conduct has been professional and ethical, my use of somewhat unorthodox paperwork or resource management presents nothing other than an administrative hiccup.  My work has served as an example to paid staff of what casework can look like in the hands of a volunteer with much more time to work a case than they have.  To some "professionally papered" staff, it represents a threat.  I don't expect others to follow my example, nor do I judge them for doing less.  I've always prided myself on going to the wall for clients.  Sometimes, however, depending on agency I am working in, that wall may be in the next county rather than the next room.  This practice can give rise to fears of unlashed artillery rolling about the poop deck.

 

The Unique Early Dynamics of this Casework

 

     Conducting casework with others in the absence of the principal is always risky, but with the communication arrangement between the adult son and his parent often conducted through a third party, Mary, I had no choice but to become a part of this complex state of affairs from the very beginning.  Much of the early casework with Allen has been crisis-driven.  It has been difficult to keep the person-centered planning values of ILR in view during much of the time I have worked with Allen.  For nearly a month, our only communication was through a third party intermediary due to the fact that he had no telephone.  That status often left me aware of information that Allen had yet to hear.  It is an arrangement that continues, somewhat modified, to the present.  Although Allen is now living in the house of his grandparent and using the telephone, Mary and his mother often call me prior to talking with Allen.  Although this dynamic started out of necessity, it has taken on an independent life of its own.  [See discussion below.]

 

ALLEN'S STORY

 

     Allen was raised in Oregon City, a Portland, Oregon suburb.  His mother survived an intact marriage with an abusive husband for many years.  During that time there was physical battery as well as emotional abuse and neglect of both her son and herself.

 

     Allen had learning problems since the first grade.  He was a slow reader.  He was a special education student identified with learning disabilities.  Allen made his way through the system, never attaining a reading level higher than the fifth grade, and having poor math and writing skills.  He graduated in 1989 with a modified diploma.  According to his mother, her two sisters and a family friend who has known Allen for years, he was warehoused as a special education student.  Despite his lack of real formal education, as an adult, one could not tell at first glance that Allen has any special issues.  The moment he is given something to read, sets pen to paper or receives instructions at work, they become very noticeable.  His special education status and modified diploma made him eligible for Oregon Vocational Rehabilitation Division Services at the time of his graduation.  His VRD case was opened shortly following his graduation.

 

     By that time, Allen had already been working since the age of 14.  He obtained work through connections made by his mother, and gradually moved through a succession of summer jobs to part time and then full time work when he graduated.  All of the jobs were unskilled.  His mother helped him fill out applications although he went alone to his later job interviews.  Allen is well spoken, polite, and reserved.  For entry level work, he makes a good impression on his employers.  He is eager for work and considers himself a hard worker.

 

     In high school, Allen was teased a lot.  He roughhoused back, and often got into fights in response to being bullied.  His mother worried that Allen had little understanding of how his anger could get him into trouble.  There were enough disciplinary incidents in school to give Allen worries about his temper.  He was a big kid, and by the time he reached high school, he had nearly reached his full height of 6 feet five inches.  Allen loved to eat, and all through high school battled weight.  When things were going well for him, he would loose weight.  When he worried, he ate without any limits.  He describes his life-long battle with weight as a "yo-yo".  Even when he was "trim," he weighed about two hundred fifty pounds. This was ten years ago.  When I first met him, to myself I called him "my man mountain."  At that time, Allen weighed 490 pounds.

 

     Allen describes his relationship with his mother as "stressed."  In talking with me about his on-again, off-again relationship, she herself uses the same term.  Throughout his growing up, she blames herself for not being a good mother.  She was called that so many times by Allen's teachers.  He struggled with homework at first.  When she tried to help him, he would explode in fits of rage, insisting that "I can do it."  When his teachers stopped giving him homework assignments, he was relieved.  His mother was relieved.

 

     He was the slow one in his classes.  But he was sociable.  He made friends easily, but they would often bait and bully him when they got bored with his tagging along.  He knew he was slow.  Everyone told him that, but the taunting, and then the physical bullying would cause him to lash out when he had stood enough.  Because he was such a big fellow, he knew he could hurt people who angered him.  He found a way out.  Rather than hurt people, he would walk away.  But the fights continued.  When he got into fights at school, his mother was quick to upbraid him, and he became sullen and defiant.  He was afraid of his anger.  Sometimes he didn't know when it would stop.

 

     There would be weeks of silence, broken at last by exhaustion of both mother and son with maintaining their sullen cohabitation.  When his father was involved, there would be more name-calling and belittlement.  His mother took to protecting him as best she could from her husband's abuse.  Reports on Allen's academic progress came less often; it was clear he was being warehoused and passed from grade to grade.  During his high school days, Allen had trouble with being impulsive.  He says he would "do things that got me in trouble."  Fortunately, Allen was likeable enough that people looked out after him.  Even if he did some things that would stretch the patience of someone who didn't know him, there were always his friends who stood up for him.  They explained him to those who didn't understand.  He never ran with the crowd that eventually made their way into the juvenile and later the adult justice system.  Allen credits his mother and his religion, two strong influences, in keeping him from that path.  Allen is proud of being a law-abiding person.  His adult friends are few.  While he spends time with them, there are few activities or interests they share in common.  His friendships are more in line with what he calls "hanging out." 

 

     His mother always picked up after Allen.  She says he never kept his room clean, and after many constant battles, she gave up, gave in, and allowed him to live, as she says, "like a pig, sometimes."  When things got really bad, she would clean his room, adding this burden to a busy schedule of poorly paid work.  Life was not easy for both of them.

 

     Although he has an apartment, Allen has been living for the past month at his grandfather's house in Portland.  He broke into the house to use the telephone to stay in contact with his friends and his vocational rehabilitation counselor.  Upon hearing of this, his mother was outraged.  In our first phone conversation, she expressed her sense of despair over never knowing what Allen's impulsivity would next drive him to do.  He's always been impulsive, she told me.  This was the last straw.  As we talked, her white-hot anger gave way to resignation.  She realized that Allen did what he did because he had a problem, and did the most direct thing he could think of to resolve it.  This was family, so, in the end, she talked herself into recognizing that Allen was just the same, and this latest incident was no different than his past impulsive decisions.  He could stay.

 

     But she was worried.

 

     Allen has never learned how to keep his living places clean.  He lived with his mother long after his income would have allowed him to live independently.  He simply wasn't ready for that.  He knew it.  She knew it.  He set out on his own home just two years ago, when his mother and her new husband were about to move to a mid-central Oregon town six hours distant by car.

 

     Over the past two months, his mother has become increasingly concerned with his ability to care for himself and his living environment.  Visits by her sisters to the grandfather's house have left her with reports of the filth and squalor of the house.  Some of the disorganization was attributable to the grandfather's last months in the house.  While he was there, the grandfather had a housekeeper who visited regularly.  Although she was not good at keeping the place clean, she did manage to straighten out the old man's clutter and assure that he had food.  According to their reports, ever since Allen has been there, less than a month, the place has been neglected and become almost uninhabitable.  There is special family turmoil over Allen's toilet habits.  He's a big man sitting on a small toilet seat.  He "misses" a lot. 

 

     Allen has learned how to cook, mainly on the stovetop.  He acknowledges that his meals aren't nutritionally balanced.  Since the middle of summer, he has gotten $125.00 worth of food stamps monthly.  He eats a lot of junk food.  He has a few beers now and then, and has been befriended by Ron who owns a sports bar where Allen hangs out.  He used to go there a lot when he was working and had money.  He never drinks a lot.  Never has.  He always wants to be around people, and the sports bar is a family place.  No rough stuff.  Nice people.  He has buddies there, and they talk cars and "rigs."

 

     He likes trucks.  He wants to be a tow truck driver.  He was a delivery driver once, for a brake parts house that went bankrupt and left him and other employees with a fist full of bad checks.  He liked the routine. He'd get a list of addresses, make sure all the orders were marked, and enjoy being on his own.  No one bothered him.  He liked that job because no one hassled him, and he was a safe driver.

 

     But that was two years ago.  When the company went bankrupt, he went on unemployment for a while.  That was easy, because at the age of 27 he was still living at home.  Then his mom met his step dad, and things changed.  Following an Employment Department referral, Allen asked Mary to come with him and help him with the employment application.  She read the application, and he filled out the blanks in his own hand.  She and his mom had always helped him this way.  Allen got a union job working at the aluminum foundry.  It paid good wages.  His mom said it was time for him to live in his own place.  He had always worked steady, so he would be fine.  He just needed to be on his own.  She co-signed for his apartment, and Allen bought a few sticks of furniture. Not much, really.  It was a month to month rental.  Allen was on his own.

 

     All during the time Allen was growing up he saw Dr. Cook.  Dr. Cook was Allen's pediatrician.  Later, Dr. Cook called himself Allen's family doctor.  Dr. Cook took a special liking to Allen.  As he said to me, "Allen has always had a special place in my heart."  He knew Allen's father was never emotionally accessible to the boy, so he calls himself, " Allen's substitute Dad."  Allen would confide in him, and Dr. Cook would counsel and advise this youth, this adolescent, this young man, this young adult.

 

     Allen has a friend in Mary.  She has known his mother, and together, they have shared in Allen's upbringing.  Sort of.  Mary was Allen's confidant.  Ever since he met her, she would hear things first, and she would then explain things to his mom.  Allen didn't think this was tattling.  Without using this word, Allen would say that Mary has always been his "translator."  Sometimes, when his mom was working, she would go to the school and explain things for him.  She always would know what to say.  She knew in a way he didn't understand when his mom would be in the right frame of mind to hear things.

 

     Last Christmas time[1998] Allen noticed something wrong.  He had this constant itch in his groin.  With his union insurance card in hand, he went to the emergency room after work.  The doctor called someone in.  Neither doctor liked what they saw.  They took a needle biopsy, and two days later, Allen was in the outpatient surgical office of an oncologist undergoing an operation removing a cancerous growth as large as a baseball.  Testicular cancer.  He didn't tell his mom at first.  He told Mary.  Two months before, his Mom had moved to Bandon, six hours away.  He would be in almost daily contact with Mary.  He underwent the operation on New Year's eve.  The first work day after New Year he made it to work with the doctor's letter.  He didn't return to work for two months.  The union paid part of his wages.  He still made rent.  But then there were payments for his truck, the family pickup.  His step dad was co-signer on the note at the credit union.  He could make the utilities.  He wasn't so sure about the other bills, not that he was a big spender or anything.

 

     During the next two months, he made frequent trips to the hospital for chemotherapy.  He was weak and spent much of the days sleeping.  Worry kept him awake.  His sleep pattern was disturbed to the point that he would go to bed at three or four in the morning.  He resumed a habit from his schooldays.  He started watching daytime television the moment he awoke.  A lot of television.  He was lonely, and there was the telephone.  He started making calls to 900 sex lines.  His telephone bills started to climb.

 

     During his convalescence, he went over to his grandfather's house.  His grandfather is 80, and frail.  He called the 900 numbers on his grandfather's telephone.  His mother and her sister had title to grandfather's house, and they paid all of his bills.  His mother told him to stop making the calls.  He did.

 

     But not at his apartment.  Worried about his cancer, not working, and with time on his hands, he ballooned his weight in those months.  He's not exactly sure how much he was adding, but he knew it was a lot.  In one year, he had gained over one hundred pounds.

 

     Allen went back to work in March.  His doctor said he would be OK but to take it easy.  Allen only heard the "go back to work" part.  Allen has always been a hard worker.  Ever since he was 14, he has worked hard.  He had stopped exercising regularly at the gym because his $12.40 per hour paychecks had stopped.  When he started back to work, he tried to make it to the gym.  He was out of shape.  He was also seriously overweight and his back and feet started bothering him.  Working in a confined environment of a pot filling line for aluminum furnaces, he twisted back and forth between pallets of ingots and a conveyor belt feeding the furnaces.

 

     His back started to bother him.  He wasn't done with chemotherapy either, and he missed a lot of hours.  He didn't tell his supervisor exactly why he was out on sick leave, and then personal leave.  His supervisor and his fellow employees started to "bug" Allen.  He was working slower than he had before.  He was missing time, often taking half days off.  Allen started getting bad headaches, and his worries about the cancer gnawed at him.  He would go to the sports bar, but he wasn't having the same kind of fun.  His friend Ron noticed that, and spent more time with him at his table, inviting his friends over for beers on the house.  Allen appreciated their support, but he knew something would have to give.

 

     Work was getting worse.  His boss and fellow workers were bugging him about missing hours and his rate of work.  Just before he left work, he went in to see a woman in the personnel office.  He told her he was missing days and full paychecks because he was still recovering from cancer and was still undergoing chemotherapy.  The company had policies that allowed accommodations for persons in Allen's condition.  She did not mention them directly to Allen.  Her interview statements with an Employment Department eligibility clerk later revealed that she knew of his health condition.  It appears from the written record that she just assumed Allen would ask for accommodations if he wanted.  Allen is not used to asking for help.  He may have been told of the company's policies when he was first hired.  The assistant business agent or shop steward may also have told him of these options when he first started.  But Allen didn't remember them.  At work, Allen started to get angry a lot.  These guys were physical, and they started to jostle him around every now and then.  You know, just horseplay between the guys.  His headaches got worse, and one day, in the middle of his shift, he went up to his boss after being upbraided for being slow and he was afraid he was going to hurt his boss.  So, he told the boss he quit.

 

     Just like that.

 

     Six weeks after returning to work.

 

     He went down to the State Employment office.  They asked him how his last job ended, and he told them.  He quit.  He didn't know these people, and there was that line of other guys waiting.  There was no privacy.  He didn't tell them about his health problem, or why he missed work, or any of that.  The man at the counter toted up his possible benefits and told him he would receive a notice from the state.  A week later, the letter came.  (He was still seeing the doctor.  The chemo sessions lasted until late May.)

 

     He was denied due to his voluntarily having quit his last job.  The letter said he could appeal the decision within twenty days.

 

     Allen has trouble with paper work.  Allen reads at the fifth grade level, and so he didn't understand the language at the bottom of the letter.  He could appeal.  Allen didn't understand all of those words.  He put the letter aside.  Maybe he threw it out.  But he knew the check didn't come the next Wednesday even after he called the Sunday night before to answer the questions on the telephone line.  He told Mary first, and that evening, his mom called.

 

     Ever since he got the job in October 1997, he had made good money.  Like many other wage earners, he spent what he made.  He didn't save. He had no prior experience in managing money.  When he lived with his mom, he would pay for things he bought, but she pretty much left him alone.  As long as he was living under her roof, there didn't seem to be the need to bother to teach him about money management.  She knew he had trouble managing other matters in his life.  Better to let this one lie.

 

     But now, there was no way Allen's lack of experience in money management could be ignored.  She knew Allen was in trouble.  No money was coming in.  She said she would pay his rent and cover the cost of his truck payment and insurance on the truck.  She would also pay for food, but Allen was to apply for food stamps.  She would send him pocket money when she could.  She quickly toted up Allen's monthly budget.  She decided on a figure of $630.00 monthly plus small supplements. 

 

     (The first time I spoke with Allen we went over his actual expenses.  Even with a large unpaid phone bill for a phone now disconnected, his mom's payments ran nearly two hundred dollars short of his actual monthly expenses.  I did no financial management and planning with him then.  The purpose to my inquiry was to have an understanding of the complete picture.  Concern over his financial condition was the primary reason why his friend Mary had referred him to ILR.)

 

     His mother knew he couldn't work.  Not right then.

 

     But he had always worked, hadn't he?  This was temporary.  Her own health was starting to kick up and her medical bills were climbing.  Allen would see his way out of this.  She was sure.

 

     She wasn't sure.  Her son hadn't told her how bad things had gotten over the past year.  He had used grandpa's phone for those sex calls and long distance calls to his old high school friends, now in Southern Oregon.  Allen was impulsive.  He didn't think things through.  Oh, it wasn't as though he would get in trouble or anything.  He was a good kid, but he was special.  Her diabetes, always under fitful control, was taking her eyesight.  She was having circulation problems with her legs.  Others in her family had diabetes.  Both of her sisters had problems.  One sister had a husband seriously disabled with diabetes and its complications.  She was trying to hold down a full time job, look after her husband, and now she had to look in on her ailing father.  The other sister had suffered a stroke a while ago and was living on the pension benefits of her former husband and SSI.  She lived near Dalles.  Mary characterized this second her as "not quite all there.

Mary had picked up that description from Allen's mother.  Mary has never met the second sister.

 

     Allen's mom feared for him.  Was he in line for the family disease?  Her husband had his own health problems, and they were six hours away.  She blamed herself for abandoning her son one moment, thinking only of her future.  The next moment she was furious at him for the same kinds of things that drove her to distraction when he was still under her roof.

 

     Her father was getting weaker.  She and her sisters had talked Dad into letting them help with the bills, and he couldn't take care of the house the way he used to.  He had long ago signed the house, fully paid for, over to his daughters.  They used his money to pay the household bills.  They would do the right thing.  And there was always Allen.  Of all his grandchildren, Allen needed special attention.

 

     All three daughters knew Dad was getting old.  By the time the one sister in Portland decided it was time for Dad to move, he had wasted away to eighty pounds.  He was always a small man, but over the past six months he lost forty pounds.  He wasn't eating properly.  He couldn't care for the house any longer.  So, a month ago, all of the sisters agreed that the time had come to place him in a nursing home.

 

     Throughout the summer, Allen stayed in his apartment.  Even after the sex phone calls ended, he would drop in on his grandfather.  He didn't go out much, except at nights when his friends were at Rod's sports bar.  But there wasn't the talk of work that kept the conversation going.  He started going less often.

 

     Right after he quit, the phone company shut off his phone.  Allen had racked up a huge bill to the 900 numbers.  He couldn't ask his mom for the money.  So he started calling Mary from pay phones to stay plugged in.  Mary would relay his messages back and forth.  On many occasions, she dropped by Allen's apartment, but he never let her in.  Even when she gave him an old easy chair.  He was polite but firm.  Mary knew his apartment must be the frightful mess his room at home had always been.  She said nothing to Allen about her concern.  She figured that, like his mother, it wouldn't do any good.  She was also smart enough to recognize Allen's sensitivity over this issue of his self-care.

 

     By mid September, both Mary and Allen's mom were beside themselves.  Mary lived out in Gresham and couldn't always drop by with notes from his mom.  His mom's health was getting worse, and money began to be a problem.  They were both concerned that Allen's weight had gotten out of control.  He seemed depressed.  In the middle of the summer, Mary took Allen over to a county medical clinic where he was quickly screened, and the Oregon Health Plan application was filled out.  The nurses there were very helpful.  Allen still had some health benefits left over from his union insurance, and when a routine blood test came back showing elevated blood sugars, Mary told Allen that this was a bad sign.  Actually, it was a very bad sign.  Allen's blood test showed that he had reached a milestone.

 

     Adult onset diabetes.

 

     It wasn't exactly a surprise to either one of them.  Mary blunted the news.  Allen does not know what the numbers on the test meant.  Mary did.  For the first month I was in contact with her, she repeatedly expressed her concern that Allen continue to monitor his blood sugar levels.  I thought she was referring to the kind of watch that pre-diabetic persons are on.  Diabetes was the worst of his mother's fears.  Even now I'm not sure how much his mother knows of Allen's actual health condition.

 

     In any event, by the summer's end, someone had to "take control" of what was happening.  Someone had to be able to put the puzzle pieces together for Allen's future.  Both mother and friend knew that mastering the system was beyond either one of them.  They also knew that Allen would eventually have to be in charge of his own life.

 

     Somehow, from some source, Mary found the telephone number to the Independent Living Resources Center.  She called and talked with the program director.  He told her

the center had just trained some volunteer peer counselors and he would see what could be done.

 

     Mary wasn't quite sure what to tell Allen.  For three weeks, she waited for someone to call her back.  After being assigned the case with only cryptic notes for a guide, I called her.

 

CASEWORK

 

     Our first telephone conversation was brief.  I outlined that ILR was not equipped to do case management.  It was technically beyond the mission of the center, but perhaps the ball could be set in motion?  I asked her what she had said to Allen, and learned that fortunately, nothing had been said as she awaited a return call from ILR.  I told her I would be available to talk with Allen at a place and time of his choosing.  Because his address was outside of Multnomah County, I would be doing fieldwork, not office visits.

 

     The next day she dropped by Allen's apartment.  He spoke with her at the door, as usual.  She gave him my name, and together they went over a date, time and place.  She called me back that evening, and our first meeting was set.

 

     Three days later Allen and I meet one another at Shari's restaurant in Oregon City.  It wasn't too far from his apartment.  I arrive early and chose a table with enough room for a big person to sit comfortably in a chair in the aisle without feeling crowded.  Allen is punctual.  Allen has a soft voice, and is very articulate.  He talks in short, direct sentences.  He is not shy about talking about most things.  He seemed to trust me almost immediately.

 

     I explain the reason why Mary had called ILR, and what my role might be.  The first meeting is just to get to know one another. I will take a few notes, but mainly, I'd like to hear his story.  He knows he is in trouble.  That's why he agreed with Mary to meet me.  Maybe I could help.

 

     After about twenty minutes, a pained expression comes over Allen's face.  His chair is uncomfortable.  He is a big man, and his backside is hurting him.  I ask him what would help, proposing he get up and stretch, and maybe walk around a minute or two.  "No," he says. " I'm fine.  It's just this chair.  It's getting to me.  But I know why I came and I know why you are here.  So let's get on with it."  I take out the ILR Consumer Service Report given me with some information about him.  It is the only paperwork I have.  I need to confirm his address, how to contact him.  Things like that.  We fill in the blanks.

 

Then I take a tablet and draw a map of the people he has described in his story.  With himself at the center, we identify eight people in his life who are a part of his present.  Some, it turns out, are informal acquaintances.  Others, not family, are very important.  I list Mary, his mom, and myself.  This, I explain to him, is a map of his support system.

 

     On the next page, we start a list.  After each number, I identify an "issue."   There is his cancer, weight problems, need to find work, concern about possible diabetes, trouble with managing anger, his depression and sleeping problems, difficulty reading, a need to replace his glasses broken four months ago.  He also lists getting back into shape and money management.

 

     I do not add items discussed by Mary, although they are to appear on later lists.  One is impulse control.  The other was self-care.  This last item has yet to make it onto a list Allen has read.  It's on mine.  Allen never shopped for his own clothes.  Two months ago, his mom was in town, and she bought him two pairs of pants.  She dropped them off at his apartment while he was away.  They were too small.  For two months, he didn't return them to the store.  He didn't know how to do that, although his mother expected him to know, somehow.  For two months, she was out ninety bucks, and finally, he handed them over to Mary on one of her visits.  Mary returned the pants and sent the money to Allen's mom.  Two months later, his mom was still angry with him over this matter.  When I first talked with Mary, she was about to drop another two pairs of pants off for Allen.  They were a size 56.  These turned out to be keepers.  Somehow, she had guessed right about the size.

 

     Allen still doesn't have shirts that fit.  All the buttons pop and pucker at his chest.  He has added so much girth that they look like the midriff peek-a-boo shirts worn by teenagers who like to show off their belly buttons.  If he does tuck in the shirt, the tails soon find their way out of his pants.  He's a big man.  It is not necessary to discuss the issue of "fanny crack."  It seems to come with the territory with men of this size, and Allen has lots of territory.

 

     From our first meeting to our last, just yesterday, Allen seems to have a three-day growth of beard running in patches around different parts of his face and neck.  He does bathe, though.  His hands are big, but clean.  Fingernails?  Well...He's always worked with his hands, you know.  But he does try.

 

     On the chilliest of evenings, I've never seen him wear a coat over his thin cotton shirts. He wears no undershirts.  I haven't asked him about underpants.  You see, Allen doesn't shop for clothes, and in a year's time, he has gained a hundred pounds.  I figure "Don't ask, don't guess."  He says the cold doesn't bother him.  I think he doesn't have a jacket or a coat that fits.

 

     For the last fifteen minutes of our first meeting, we move to the restaurant counter.  The chair has taken its toll.  It concerns me that others may overhear our conversation, but we finish our list and discuss the next meeting.  We will meet at the restaurant again in a week.  I will bring the ILR paperwork and explain it to him.  Before leaving, I bring up a topic we have discussed throughout the evening:  his need to make an appointment to visit the Vocational Rehabilitation office.  He says they have orientations every Tuesday, and says that he will go the day after our next meeting.

 

     Twenty-two miles roundtrip.  An hour and a quarter for the meeting.  I'm not paid for mileage or my time.  I'm a volunteer.

 

     The next day begins a pattern of emails and phone calls back and forth between Mary and myself.  She says that Allen called her and thought the meeting went fine and looks forward to the next one.  She's going to drop off those pants.  She hopes they fit.  We discuss the next step.  The first one is to assure that Allen makes it to Vocational Rehabilitation.  The second is to get Allen's communication going well with his mother.  I know about how to help Allen with the first item.  The second?  Maybe Mary has some ideas, but it might be good to wait to see whether I work out with Allen.

 

     A week later, Allen and I meet at the restaurant.  He looks noticeably more relaxed, less worried.  I've brought the forms and read each one to him, explaining first what the form is all about.  Before he signs anything, I explain about the Client Assistance Program.

 

     I ask Allen to always tell me when he is feeling any way uncomfortable about what I am saying or doing.  He says OK.  He and I sign the forms together, as needed.  I do not have him sign the Independent Living Plan form.  We need more information before doing that.  More meetings.  We haven't gotten that far yet.  Before leaving, I remind Allen of the orientation meeting at VRD the following day.  He says he'll make it.

 

     Already I was slipping into uncharted territory.  Not for me, but certainly for a center for independent living.

 

     I send Allen an envelope with all of the completed forms.  These are his records, I write.  We'll go over how to keep records in a while.

 

DIRECT SERVICES

 

Intake and Assessment

 

     At our first meeting, Allen identified the following concerns:

 

            Functioning Evaluation

            weight loss counseling and nutritionist-dietician consultation; depression

            management (response to cancer and protracted unemployment);  Hypoglycemia

            (prediabetic issues--family history of diabetes)

 

     It was difficult for him to prioritize his concerns, and it is likely that their significance changes dependent upon the degree of control he feels over his day to day life.  As can be seen from "Allen's Story" above, there are other issues.  Even after one visit, I identified the following:

 

      Family, and/or conjoint counseling - family case management and detachment issues

      Resource development and management

      Life skills training in self-care, care of living quarters, and self-advocacy

      Diabetes support

      Client records management

 

Employment and Career Counseling -- The Background

 

     Allen said that he is actively seeking work.  He checks in at the union frequently.  At a job he was sent out to today from the union hall, he faltered at completing the application, but more importantly, had grave difficulty taking a "test" required for the position of furnace attendant, a test involving mathematical calculations and written instructions unfamiliar to him.  He feels the dispatch was inappropriate in view of the unskilled character of his previous job with the same employer at a different location.  On his way home from that employer, he inquired about a job at a local gas station. 

 

     Allen has mixed feelings about work.  His self-report regarding work is Allen says his mother is badgering him to get a job, and he feels pressured and depressed after his conversations with her.

 

     Allen's employment goals are somewhat diffuse.  He has held a succession of low-skill, repetitive task jobs since he was 14.  In the past, he has worked as a member of a ground crew for an arborist, a flagger for the county department of transportation, dishwasher, unarmed guard, light truck delivery driver, shop helper, and most recently as a furnace "pot filler" at an aluminum smelting and fabricating plant.  His average tenure ranges from four months to a little under a year.  He quit several of his jobs, and except for the seasonal work, was fired from the rest.   He remains a member of the International Association of Machinists, Portland Lodge, on conditional withdrawal status until he finds work. 

 

     Allen is taciturn about his actual work performance.  While mentioning that he is a hard worker (and his record of obtaining work and sailing through the interview process is good), his present condition may not allow what he had going for himself in the past to be used in the job search process.  In interviews with vocational rehabilitation, Disabled and Senior Services and Social Security where I accompanied him as an advocate, he was forthright in directly answering questions about how he works.  He says he is a slow worker, and needs lots of supervision and training to get him started.  Performance was an issue in the jobs involving being fired.  Even at his last job, before his operation and recuperation, his supervisor was "on my case" for slow or inattentive performance. 

 

     When asked about what he would like to do for work, Allen enthusiastically mentions truck driving.  During this past summer, a local auto towing service in Portland hired him and he worked as a helper for two or three days.  He was let go when a DMV report showed two moving violation citations nearly three years old.  That made him ineligible.  Allen claims he told the owner about the citations and when they would be expunged from his record (December 31, 1999). The employer put him to work anyway. 

 

     When first describing this employer, Allen said he thinks the employer may hire persons with questionable driving records, and he would not be interested in re-applying once his last citation is "retired" in January.  He knows that the citation will prevent his obtaining a driver's job until then.  In later conversations, his distaste about that employer has not come up and he makes frequent reference to re-applying for the job.  There is a possibility that he may be confusing that employer with a friend who has casually offered him an opportunity to learn to drive big rigs on short hauls.  That offer was made earlier in the summer, and Allen has mentioned it when others ask him about what he would like to do.  Although this topic has not come up in recent conversations, he may still wish to pursue this goal.  His physical condition, the record keeping and self-organization demands of such work and his weight may not allow it.  I have mentioned none of these concerns to him.

 

     Due to his difficulty retaining employment and the manner in which he has quit his jobs, I suggested that retention and job performance is something worthy of exploration with his VR counselor.  In his intake visit with his rehabilitation counselor, he identified all of these areas of concern.  [See below for a description of advocacy services.]

 

Peer Counseling

 

     Throughout my relationship with Allen, we continually identify new resources in his natural support system.  In "Allen's Story," above, I have alluded to a number of persons within his support network.  Additional resources that Allen uses are the mother of an old high school friend.  The friend has moved to Pendleton, but she lives in Klamath Falls.  He calls her his "third mom."  He calls his friend in Pendleton frequently, and visits his "third mom" whenever he can, although that involves considerable driving to Southern Oregon.  He also calls her.  Allen's mother is unaware of the content of these long distance calls or the reason why Allen makes them.  Without a more complete understanding of the special nature of that relationship, she continually rides Allen for the expense of the calls.

 

     Despite the on-again, off-again relationship with his mother, Allen identifies his stepfather, Joe, as a "real dad.  The two do "men things" together, and he feels an emotional bond to him not present with his biological father.  He also respects his stepfather's directives, something he never did with his biological parent.

 

     His biological father lives in central Oregon.  Allen does not feel emotionally close to him.  Their occasional visits are strained.  When Allen had to make the co-payment on his surgery and aftercare for cancer a year ago, his biological father paid the bill.  He talks with him infrequently on the phone, and has very mixed feelings about him.  Allen's mother's estrangement from her former husband is complete.  Allen's direct connection with his biological parent may be an ongoing source of unarticulated, underlying resentment by his mother.

 

     Additional natural supports for Allen include his friend Jim, an ex-boxer who Allen sees (when he has money) at a gym.  Jim acts somewhat as a personal fitness trainer.  When Allen becomes involved in a fitness regimen, if authorized by VRD Jim may be a natural potential vendor for this purpose.  Another friend, Dickie, is "an older guy" who has offered to take him on as a truck driver.  (See above)  Although the employment relationship may not work out, Dickie may remain a friend to Allen and be available to Allen for his other needs and to satisfy his social need for companionship.  And there is Ron, the guy who owns the sports bar.

 

Solving the Riddles:  Evaluation and Resource Identification

 

     Allen has substantial, unspecified challenges relating to his reading literacy and capacity to self-advocate.  I feel the exact nature of his strengths and abilities would be best determined by a complete learning disabilities evaluation.  I also believe he would benefit from a full neuropsychological functional evaluation to provide the essential information for informed planning with his VRD counselor.  His multiple medical issues have already been described.  Until he qualified for services under the Oregon Health Plan (OHP), a physician capable of the kind of comprehensive consideration of all of them had not seen Allen.  Allen has chosen a doctor who has known him for some time, and was his stepfather's doctor before the move to Bandon.  Allen feels confident that the doctor will refer him to specialists and other medical and service resources available on referral and covered by OHP.

 

     Allen's multiple health problems warrant provision of short-intervention psychological counseling.  He mentioned a need for psychological counseling in the first five minutes of our first meeting.  In response to his concerns about depression, I alluded generally to medications.  Allen is adamant about not taking medication.  His resistance may be a function of medical treatment provided to him when he was younger.  It is obvious that with his current health problems, his resistance to medication must be addressed.  His mental health coverage started out on "open card" in Clackamas County.  The only provider under the OHP in that county is the County Mental Health Center.

 

     His Multnomah County coverage is with Blue Cross/Blue Shield.  In Multnomah County, Allen has a very wide choice of mental health care providers.  Because of several crises occurring within a short time of having met him -- the greatest being the news that his mom will be cutting off his funds in January -- I later arranged a mental health appointment with the Clackamas County Mental Center.  [He kept the appointment.  Allen provided my name in a release, and his counselor repeated his assurance to Allen that he will not fall between the cracks of the service system while his case coverage is being transferred to Multnomah County.  His counselor in Clackamas County has begun an assessment of the specific behavioral and attitudinal challenges that Allen faces, and his information may be of value to the intake mental health screeners in the Multnomah County system.]

 

     During our first meeting, Allen's overarching concern was getting back to work.  Incessant reminders from his mother that he needed to keep looking for work and get a job colored his ability to concentrate for any length of time on his other needs.  As the first meeting progressed, he sensed that I did not share any such priority regarding his work status, although it took a couple of later meetings to shift the discussion to his more immediate health and housing needs.

 

     Despite his learning disabilities and recent bout with cancer and his current concerns with weight control, Allen appears to be generally upbeat and positive.  I sensed that when he knows things about himself that he is a competent self-advocate.  Because his issues are so complex and interrelated, he needs guidance in determining his priorities and accomplishing tasks in the best sequence to address them.  Once he identifies a task, his follow-up is excellent.

 

Vocational Rehabilitation -- A Special Case

 

     During our first meeting, Allen had said he was unhappy about the treatment he received from VRD.  Allen had opened is original case with VRD right out of high school.  His case had been activated and closed numerous times over the past eight years.  Because his motivation to find work had always been high, Allen found his own jobs while waiting for his VRD counselors to help him.  Once he was employed, his counselors closed his case, only to re-open it when he was fired or quit and he came back into the office, usually on his way to the unemployment line.  A cycle would begin of his finding work, failing to retain it, and making brief contact with VRD before he found the next one.

 

His file shuttled from counselor to counselor over eight years, and was opened and closed a half dozen times.  He was never sent for specific learning disability evaluation as an adult, nor was a full adult functional neuropsychological evaluation performed.  At the time, and even today, VRD counselors understand little about cognitive deficits unrelated to mental retardation or developmental disabilities.  Allen's learning disability classification got him through K-12, and was enough, even with VRD being on an order of selection, to get him through the eligibility gate of VRD.  Because he was so high functioning and seemed to be taking care of himself (even if living under his parent's roof), his wasn't a high priority case for intensive case management.  Because Allen was successful in finding his own work and keeping it for longer than sixty days, each closing represented a paper success for placement.  There was only problem with the scheme.  Allen wasn't getting anywhere.  He was still totally dependent on his mother for shelter and food.  He had learned few independent living skills.  He was building a record of short-term employment experiences with a mix of quits and terminations.

 

     His last VRD counselor closed Allen's case without even notifying him.  That counselor was not CRC qualified, and had only a Bachelor's degree plus a few hours of additional coursework in tests and measurements.  He was hired as a temporary employee at a time of shortage of qualified VRD counselors.  Allen was very displeased with him on the several occasions that they met.  It later turned out that this counselor was terminated for mishandling a number of cases, Allen's among them.  I learned this information through informal contacts with VR counselors at the other four Portland Metropolitan VRD branches.  The Clackamas branch had a reputation as a high turnover, poorly managed office.  Allen was never well served there in the past.

 

     In anticipation of our second meeting, I drew up a separate release and advocacy agreement to guarantee that Allen would have effective advocacy during his next experience with VRD.  Since Allen is my first case as a peer counselor at ILR, I was unaware that the general ILR release and consumer application forms covered that conduct.

 

     Allen understands that if people don't know much about him, they can't help him when he asks.  He agreed that learning more about his own learning challenges and understanding about what he does well, and where he needs help from others would be useful for him.  Re-opening his case under "learning disabled" is not sufficient given his difficulties in retaining employment.  Anger management counseling would also be a part of the counseling and training package, as Allen indicated it as a primary factor leading to the reason he has quit a number of jobs.  On top of those factors are his recent bout with cancer, his trouble sleeping (and his sleepiness during the day), his weight, and his likely diabetes.

 

     I also learned that once a person is found eligible by VRD, even if the case is closed for some time, re-certification for eligibility can be fast-tracked.  Allen didn't need to attend orientation.  Besides, he says, he doesn't like those meetings.  He has always done better one-to-one.  Knowing this, Allen agreed to go to the front desk of the VRD office and ask for an individual appointment.  He could handle that.

 

     He did so the next day, and got an appointment for Wednesday the following week.

 

Counseling

 

Crisis I -- The Beginning of Resource Identification and Management

 

     My first two meetings with Allen went very well, and are described above.  Between the second and third meeting, Allen and I went to VRD together for his intake appointment.

 

     Prior to meeting with Allen the third time, Mary called me with the news that his mother will not be able to financially support him beyond January.  She plans on cutting him off for two reasons.  The first is her frustration that Allen has done nothing to become employed since April.  She has shifted ground on this one.  Once Allen was connected with VRD, that was supposed to have relieved some of her anxiety about Allen's not taking charge of is own life, and that finally Allen is involved with a system of support that isn't mercurial.  Somehow, the fact that he has done that, and has found an excellent VRD counselor has slipped from her view.  Things aren't moving fast enough for his mother, although Mary explained to her that things take time, and that Allen is finally on track.

 

     I am beginning to see a pattern of instability and inconsistency with Allen's mother that Mary has told me about all along.  The way in which she shifts her approach is a mixture of both subtle and sledgehammer.  One of her sisters describes her as "nuts."  This is the sister who had the stroke and who now lives in partial communion with nature in Dalles.  When I sat down in the grandfather's house and spoke with her for an hour, I got a picture of Allen's mom and her disaffiliation from her two other sisters that explains some of Allen's confusion about his mom.  Mary has said all along it is hard to pin her friend down to anything; that she blows hot and cold in the same breath, and that this was the main reason Allen found Mary source of stability, and still does.

 

     The second reason his mom wants to cut Allen off is that her health has begun to deteriorate rapidly.  At 55, she is losing her eyesight and is having severe circulation problems.  Her health expenses are getting out of hand.  Her husband is ill a lot.  There is no extra money.  Diabetes is taking its toll.  There must have been conversations between Allen's mother and her friend for some time about this matter.  Mary felt that Allen's mother was at a breaking point.

 

     Loss of financial support would render Allen homeless.  Mary and I reviewed what both of us knew of his financial condition.  Most of our conversation was spent in brainstorming a general backup plan of support for Michael.  I mentioned a number of possibilities.  Knowing that he lived in Clackamas County, I realized that this county has virtually no public shelter program for single homeless men.  At least not men in Allen's condition.  Next considered was publicly subsidized section 8 or county public housing.  I knew nothing about either system, so that would require some research.  [Research the following week found that Clackamas has no priority list for disabled persons.]  In our first conversation, I had asked Allen whether he was committed to staying in Clackamas County.  I asked the question because of the relative inconvenience of continuing to do long-distance counseling with him, and the absence of good, comprehensive social services where he lived.  He was open to the possibility of moving to Multnomah County if that would be a more supportive environment.  Allen's answer provided a possible "out" if living in his apartment in Clackamas County was about to become an issue.

 

     The rest of his connections to the adult community support system were tenuous.  During the summer, Mary had helped him complete an OHP application, but he had not yet received any information about his eligibility.  Not knowing how well Allen would handle this news about possibly becoming homeless, I was concerned that he get connected with mental health services.  Mary and I agreed that determining his OHP status would be useful.  Not only was his mental health status of concern, but his weight and diabetic blood sugar levels warranted immediate medical attention.

 

     Getting him connected with the health care system would provide diagnostic and evaluation services to determine the role his known learning disability could play in making him eligible for either SSI or SSDI.  A complete physical examination might reveal other conditions that could affect his entitlement programs' eligibility.  In any event, he might qualify for cash assistance (General Assistance).  That could offer some relatively immediate relief.  If he were to be found eligible for entitlement to support as a disabled person, Michael could begin to gain financial independence from his immediate family.

 

     Mary agreed to find out more about his OHP status.

 

     Over the weekend, Allen talked to his mother on the telephone.  She told him what her friend had told me.  The first thing on Monday, Allen phoned me to convey the news.

 

     We already had our third meeting planned for that week.  Allen's voice was very steady, very controlled, and very scared.  He had done his homework.  He was on the VR track.  Now his mother had changed the rules.  His lifelong fears of abandonment were about to be realized in less than two months.  We would meet our third time that Thursday.

 

     Mary and I were in contact with one another throughout the week.  Through her, information was filtering down to Allen's mom.  During the first two days of the week, Mary backtracked through the OHP application process she started in the middle of the summer.  She discovered that Allen had been found eligible in the middle of September, but his case was in limbo, and no one understood why.  I contacted the public health advocate's office in Oregon City and discovered that in the rush of things during the summer, Allen had forgotten to list his apartment number on the application.  His eligibility notification mail had been returned to Salem several times with "address unknown."  Consequently, his status was suspended pending renewal of contact with him.  I provided the advocate with his apartment number, and she called back an hour later to say that Salem would be mailing his notification letter to the better address.  In the meantime, he could "use the system" if he needed even without paperwork in hand.

 

     In view of Allen's audible despondency, I arranged an appointment in advance, and without his knowledge with the Clackamas Mental Health Service.  The intake worker stated that Allen was not in the kind of crisis to warrant being seen right away, but time was available to him next week if he chose to go.

 

     I met Allen on Thursday as planned.  I talked generally of the challenges he now faced.

In our intake visit with his VR counselor, she had told him to stay in contact with her.  That is the only way, she said, that she could keep track of what is going on with her folks. That was all he needed to hear.  Allen was on the telephone with her two or three times a week after that meeting.  Allen was "plugging into the system."

 

     We talked about how his expenses could be reduced.  I mentioned that Clackamas has no preferential public housing list for disabled persons, and that the list for section 8 housing as well as public housing for single persons is about three years.  No exceptions.  Fine, he said.  He would move to Multnomah County where there are ways of getting a priority spot on a short list for rent assisted or Housing Authority of Portland managed housing.  Because his transportation was costing him a minimum of $275.00 per month (payments plus gas and no extras) I asked about his truck.  Allen has always hated the bus.  He was teased unmercifully on the bus all the time he went through school.  Since high school, there always was a family vehicle he could use, and when he got his union job, he made enough money to buy his step dad's pickup.  I mentioned the real likelihood that if his mother did cut him off, the truck payments and insurance payments would stop, and that by living in Multnomah county, with its far better public transportation system, getting to and from appointments and work would be easy.

 

     This is a reality he is unready to face.  But now he's heard it.  For now, though, he still has his truck.  [In a conversation with his step dad three weeks later, I was told that Allen would probably be furnished with some relief, and some way to avoid having to lose the truck.  His step dad knew what his mother didn't know.  This was a "guy thing," and somehow, things would be arranged.]

 

     We also talked about other sources of money.  There was general assistance.  Not much, but when he mentioned cash assistance to his VR counselor, she was surprised, as was I when Allen said the woman at the county social services office told him he wasn't eligible.  He had been on food stamps for three months.  Obviously, we both said, there was a mistake.  It may take some time, but GA is there for him.  Both the VR counselor and I mentioned Social Security.  Years ago, Allen's mom had started an application.  It never went anywhere.  Allen was living at home; that seemed like a forever solution, and he was working at the time.  She never followed up with all the documentation she was asked to provide.  So, things weren't hopeless. They would just take a while.

 

     We also reviewed other options available to Allen.  At the meeting the week before with his VR counselor, we both informed Allen that regardless of where he lives, he can start to open claims for cash payments.  There was GA, which didn't pay very much, but it was something.  Then there were the two types of Social Security.  Depending on his current income, he could apply for one, or the other, or both.  At the time of the visit, Allen's OHP status was considered "solid."  He just hadn't heard anything from the plan yet.  This would open up a funding source for medical and psychological counseling.  His worker agreed that Allen would be tested for specific learning disabilities and given a neuropsychological evaluation at agency expense.  She and I had the same names for vendors, and she agreed that our "match" meant we were thinking along similar lines.  Because there were questions about his eligibility for GA, we both thought that a return visit to the general Clackamas County Social Services office would be helpful.  The VR intake meeting had taken place before "Crisis I," so although Allen knew what plans were being made to meet his needs, there was no sense of urgency.  At that visit, he expressed his strong desire to return to work.  His VR counselor and I both assured him that finding out more about himself would be helpful before he resumed an active work search.

 

     He agreed.

 

     My third counseling session with Allen took place two weeks later.   By that time, Allen was calling me regularly; he was calling Mary and his mother and talking with his friends long distance.  He had been using his grandfather's telephone.  His grandfather spent most of the time in his rocker with the furnace turned up to ninety degrees.  Allen sweated bullets just thinking about going into that heat, but he knew where a telephone was, and it was "free."  Sometime during those two weeks, his Aunt Margaret moved Allen's grandfather to a nursing home.  She said Allen should spend some time at the house cleaning up.  After all, she was close by -- in the same neighborhood, actually -- and she would let him in to do that.

 

     Mary called me at work on Friday.  It had been a busy week. She had contacted his family physician and he was willing to see Allen on an emergency basis, if needed.  She had talked with another old family friend, and together, they were on the phone with Allen's mom daily.  Allen didn't tell her that on some occasions before he started to live there, he forced entry into grandpa's house.  Things were happening fast.

 

     I had found the name of a cancer support group facilitator in Oregon City, and Allen could attend the next meeting the following week.  I had set up a mental health appointment for him if he wanted it.  In order to do that, I had called an old contact at the East office of the Multnomah County Health Department.  I met OHP intake worker Mike Ross one day earlier in the summer when bird-dogging information leads on the OHP for a private client and his parents.  He was very helpful.  As we talked, he got on his computer screen, and in three minutes, I had all of Allen's health coverage information and codes.  I could talk with service providers in the OHP system on Allen's behalf if he wanted.

 

     For his emergency medical support system, Allen had given me the name of his one-time family doctor, Dr. Cook.  We played phone tag for a while, but finally connected.  I asked Dr. Cook whether he could see Allen under his OHP coverage.  Dr. Cook does not accept OHP patients, but said he would do anything needed to provide information to any service providers and Allen's new doctor.  Since I have extensive knowledge of high functioning autism, I asked Dr. Cook whether he had ever considered something like mild autism when Allen was seeing him.  There was a long pause at the other end of the line.

 

     I could hear the wheels and gears moving.  "Now that you mention it, "Dr. Cook said, "the thought had crossed my mind when I watched Allen start school."  This was in the mid 1970's.  Nothing was known about milder forms of autism at the time, but Dr. Cook had seen a few lower functioning children, and there were echoes of their behavior, especially when Allen's mother described her son's learning problems.  "But no," he thought, "not probable."  Allen was "slow," but he has known lots of slow kids who grow up to be slow adults.  Something different with Allen, though.  He seemed so sharp with some things, and completely "out of it" with others.  Always had been.

 

     I described some of Allen's own depictions of himself, and added those of others.  As an adult, Allen has been a "loner." He wasn't quite that isolated as a youth, but Dr. Cook could see Allen withdrawing as he progressed through school.  And he did seem to have a few, narrow interests, and difficulty in making real adult friendships.  Dr. Cook thought that with the information presented "this way," there might be a possibility.  Allen had never been able to "read other's minds," a classic red flag for autism.  He always asked his mom, then others, for their take on things he was unsure of, especially people's motivations.  Sometimes he didn't ask at all, and that was usually when he either assumed what someone else was thinking, or when he had no thoughts of his own on a matter and assumed the other person also didn't have any thoughts.  Sometimes this got him in trouble.  Like when he did something, not thinking of the consequences, and all of a sudden people were all over him like a ton of bricks.

 

     "Interesting," said Dr. Cook.  But Allen was about to enter the adult health care system where the issue of a more accurate diagnosis could be pressed.  In view of Allen's current high functioning, maybe a catchall diagnosis of PDD-NOS might be more accurate.  When and if that time comes, he said, he would be available to share Allen's medical history and his own observations about Allen as a young child with a diagnostic specialist.  "Wish him well," the doctor said," and tell him I have him in my thoughts."

 

My Period of Quiet in the Eye of the Hurricane -- Relief from Personal Overload

 

     The next three weeks were filled with Thanksgiving and agency contact vacations and a few phone messages.  Allen's VR counselor was out for ten days.  I was completing my move into new housing, and was given a week off from work by an understanding supervisor to attend to these affairs.  I needed the break.  During this time, I was involved in the following:

 

     A stressful move, on short notice, with all the trimmings.  Its previous tenant had abandoned the new place and I spent a full week cleaning it.  Once the time for moving came, a person who promised to help failed to come through with vehicle or himself, and I had to rent a truck and spend two crazy days hustling the help of anyone I could find to finish the move.  I didn't have a working bathroom sink for two weeks; the shower leaked buckets on the floor, and the furnace was failing.  [A month later, the furnace died.]

 

     Adjustment to a new National Council on the Aging internship placement.  Fortunately, the supervisor was understanding about the stress imposed by my forced relocation, but I still had twenty hours a week of time to commit to work, much of it new and challenging.

 

     A short bout of diverticulitis.  Very painful, very scary.  When your gut hurts all the time, your head is sometimes disconnected.  It showed.

 

     Moderation of the adult Asperger Syndrome Support Group which I founded and facilitate at ILR twice a month.  Both meetings took place during the period of my move.  At the second one, the group decided on a new meeting time and date schedule.  Much relief all around.

 

     Near-weekly supervision meetings with my ILR staff supervisor, a counseling psychologist and very interesting man.  Both of us get off track easily, and I wasn't able to discuss some of my concerns about where the case is going.  That left me to fly by the seat of my own pants, especially once Allen started to call me more often.

 

     Personal challenges in my own VR case.  At the end of August, my VR counselor said he was closing my case.  I objected.  I also opened a file with the Client Assistance Program.  I was in a part-time minimum wage internship at IAM cares, not employed by that agency.  I contacted an independent advocate not connected with ILR when I discovered that my ILR mentor had not served me well in the Mentor Program representation of my interest to become an independent disability consultant.  I wish to shift the job developer IPE goal to a status as an interim employment objective.  I spent much of November soliciting letters of commendation and recommendation from persons that I have helped in the past, and colleagues on several professional Internet listservs.

 

     Completion of the second sequence of classes for the CCER PVS course.

 

     Re-writing two chapters of my book overdue for simultaneous publication in England and the US.  My editor is the publisher and owner of Jessica Kingsley Publications, and was delayed in her work on the book due to business commitments

 

     Re-activation of a very complex private transition case.  My report regarding that case has been submitted as assignment number 1 for the CCER-PVS course.

 

     Personal commitments do have an effect on judgment.  I have difficulty saying "no," so time management issues have always been a challenge for me.  For a while, I found myself stretched thin.  Despite all of my commitments, I think I handled the multitasking demanded by the concerns above quite well during this period.  It wasn't easy, though.

 

     During this period, important people were not available for contact in Allen's case.  This included Mary, who took a two-week sojourn to the California Redwoods.

 

Back on Track

 

     Once people returned from their vacations, I resumed building community contacts with Allen.  It looked as though Allen might have found a temporary answer to his cost of living.  His grandfather was not expected to return to the house, and maybe Allen could live there rent-free.  I suggested that we start moving to apply for program eligibility for cash and other assistance.  He thought that would be a good idea.

 

     When I got to the office, I called the Clackamas County Mental Health Service.  There was an appointment hour open the following week.  I reserved it for Allen.  Had I overstepped the boundary in arranging an opening for him for a mental health appointment?  "That's OK," the appointment clerk said.  "Family and friends do that all the time for our patients."  I was neither family nor friend, but I was opening doors for my consumer.  If he chose to go through them, so much the better.  My concern about doing "too much" case management without securing my client's input or his advance approval really bothered me, and I looked forward to talking about my action with my ILR supervisor.  Everyone who knew Allen said that connecting him with psychological counseling at this time would be helpful.  I was uncomfortable about how I had done that.  My ILR supervisor hadn't been available for consultation for nearly three weeks. There was a lot to discuss with him for our appointment on Monday.

 

     That afternoon, I touched base with his VR counselor.  She had returned two days ago after being off for nearly three weeks.  She had gotten an appointment with the learning disability specialist in West Linn for the following week.  The neurophysiologist was not available until after the first of the year.  The following week, Allen had the SSA application appointment, his first LD testing, and a visit to the mental health counselor.  A full week.  [Unknown to others, Allen intended to check back with the Employment Office on the day of his mental health appointment to try to re-open his claim for unemployment insurance benefits.  He also re-contacted his friend with the tow truck business in Portland.  He had encouraging news that he might be able to reapply for work after the first of the year.  Allen was starting to take care of business.]

 

Mary called me at the office.  She had just gotten back to town.  She wanted to hear news about what was happening with VRD.  On her way to the Redwoods, she had stopped by Allen's mother's home and that subject dominated their entire visit.  What was VRD going to do for Allen?  What other progress had he made during the past two weeks?  After recognizing that nothing gets done fast during holiday breaks, we talked about what had transpired, and Allen's schedule for the following week.  Mary was unaware that Allen had been was at his grandfather's house almost daily for the past two weeks.

 

     The message machine was flashing "urgent" when I got home.  Mary had called, and had some very distressing news.  Could I call her back?

 

 Crisis II - Impulse Control and Clashing Personalities

 

      On Thursday, Allen jimmied a back window on his grandfather's house and crawled in.  By the end of the week, the house had a squatter.  This also meant Allen had a Multnomah County address, although it was his grandfather's house.

 

     Allen had found a means to leverage his way into no-cost housing where the expenses were all paid, and there was a means of instant communication.  No more relay conversations.

 

     Allen called home.  Hearing his voice on the phone that evening, his mother was livid.  He had broken into his own grandfather's house like a criminal.

 

     Allen's mom called Mary.  She said she was going to come to Portland somehow and boot her son out of grandfather's empty house.  She called Allen back and told him what she was going to do.  Neither Mary nor I thought that his mom would make the drive.  Neither one of us thought his mom would hold that intention very long.

 

     Both of us were right.

 

     But the heat was on.  During her telephone conversation with her son, his mom had told him that she would definitely be cutting him off financially in January.  We were back to square one.

 

     Before I went into work on Friday morning, I called Allen.  He told me of his telephone conversations with his mother.  I suggested that his mom might reconsider when she has a chance to cool off.  Because her behavior has been unpredictable in the past, he thought it would be good to think of a back-up plan.  We couldn't do that right away, but for right now, except for the worry, nothing had changed.  Mike was very distressed.  I told him that I had reserved a mental health appointment opening for him the following week and he said he would go.  He needed to go.  I was in the middle of a telephone conversation with someone else, and would call him back.  I then left for the office.

 

     I needed time to think and not to get sucked into precipitous commitments.  Mary called the moment I arrived at the office.  She had no news, but we came up with a plan to keep Allen busy for the rest of the day.  If he intended to stay at his grandfather's house, he should get the answering machine from his apartment.  He should also check for any mail at his apartment.  Finally, he was to look for a copy of the rental agreement on his apartment, and find out whether a last month's rent had been paid in advance.  If it had, Allen would have an extra month beyond January to deal with a housing crisis.

 

     What else?

 

     Grandpa's house was littered with debris, and Allen could start cleaning it up.  There were yard debris bags in the garage, and he could start putting debris from all over the house in them.  Something to do.

 

     Allen called about an hour later, and I shared the information about the mental health appointment's being available to him if he wanted to go.  On closing our conversation, I reminded Mike that he had a full week ahead of him.  I would be going with him to the SSI office in Milwaukee, picking him up at his grandfather's house in Portland at 8AM Tuesday.  We would also look at his apartment rental agreement.  I would see whether his last month's rent was paid when he signed the agreement.   Wednesday he is to see the LD tester for the first of two appointments for a specific learning disabilities evaluation.  Thursday he had the counseling appointment.  His aunt had come over to the house and given him a box of yard bags.  She assigned him the duty of cleaning the place up.  That was work for Thursday and Friday.

 

     When I got home that evening, Allen's mother had left a message on my answering machine.  She wanted to talk.  This was to be our first conversation.  The first thing she talked about was Allen's behavior in breaking into her father's house.  After she vented for awhile, I asked her to tell me about what it was like for her when Allen was growing up.  I changed the topic to help her get a long-distance picture of this recent event.  Allen has always been impulsive, she said.  I kept the conversation focused on what might have led to Allen's break-in.  His mom said that Allen rarely thought about the consequences of what he did, or even how what he did would look to others.  Do you suppose, I asked, that a possible reason Allen broke in was to get to a working telephone?  For the past two weeks, he had kept in touch with Mary, his friends, his VR counselor and me.

 

     She said that there was a chance Allen could stay there.  In order for Allen to stay, she would have to check with Margaret, her sister.  Financially, that would make things easier.  The rent she was paying on Allen's apartment was nearly five hundred dollars.  She couldn't remember the details of the rental agreement she co-signed nearly two years ago.  The house is in their name, and they had both started to talk in advance of selling the house after their father passes away.  She does not talk of her other sister in Dalles.  [Mary told me the title to the house is in all three sisters' names.]

 

     Later in the conversation she said the reason for selling the house, a three bedroom home, was to take her side of the proceeds and set up a trust fund for Allen.  He knows nothing of his mother's intentions now, but she intends to tell him when the time is right.  We spent considerable time discussing her difficulties with bringing up Allen as a single mother who had been abandoned by her husband and his father when he was very young.  Throughout the conversation, she referred to herself as a bad mother and almost in the same breath a worried, concerned parent who doesn't understand her adult son.  She has never understood Allen.  She was frantic about his future.  With her failing eyesight and circulation problems, and her husband's illness, she had no idea how much longer she could provide for him.  That was why she set the end of January as the cut-off date.  It would get Allen to move.  To get a job.

 

     The conversation swung back to the issue of how Allen can survive without cash from her.  The truck and insurance costs are killing her.  She thinks that since Allen may live at his grandfather's address, he will have to consider using the bus.  With a doctor's certificate that he is a disabled person, he can get a monthly, low cost bus pass.

 

     She, Allen and his stepfather will have to agree on his use of the telephone and set other conditions for his occupancy.  Her primary concern is that Allen has no experience in keeping his place clean.  I mention there is a possibility that the adult disability system can arrange for people to come to where he lives and teach him how to take care of the place.  If assistance can be provided, she would be relieved of the concern, and Allen could learn the skills necessary to allow the trainer's assistance to fade over time.  I presented this type of work with him as part of a larger package of adult training services, including money management, impulse control, and the other issues.  During his interview with the VR counselor, he stated that he needed help in these areas.

 

     By the end of the phone conversation, Allen's mother had been brought up to date with Allen's plans for connecting with other community services.

 

     That same evening, Allen's mom called him back.  She was backing off on her threat to kick him out of his grandfather's house, but she still couldn't support him beyond January.

 

     The following day, Mary called to say she had spoken with Allen's mom.  His mom seemed relieved.   She plans to come to Portland soon with her husband to discuss Allen's living arrangements.  This was Saturday.  I called Allen and proposed an action plan for Monday.  It would involve some tight scheduling, but we could accomplish a lot on just one morning.  I also told him that I would write out a large print schedule for the coming week's appointments and tasks.

 

     The following Monday morning, I met Allen at his grandfather's house.  There was no heat in the house; Mike said the oil tank went dry a week ago.  I suggested he call his mother when he got home from our morning appointments to let her know.  [It turns out the call wasn't necessary, though he made it anyhow.  His Aunt Margaret had been over the previous day and had called his mom.  Oil would be ordered.]  The cold didn't seem to bother Allen.  In his light clothes, he was sweating heavily.

 

     I handed him the large type schedule of his appointments for the week.  The schedule included all contact names, addresses and phone numbers for his appointments, and the tasks he could do between appointments.  I followed him to his apartment complex and I composed and Allen signed the thirty-day notice.  His rental agreement had no last month deposit, so his total deposits were only 75 dollars for key and 75 for cleaning.  Allen would not let me view his apartment.  He said he would start to move after Christmas.  He has few furnishings there, but has much cleaning to do.

 

     Next, we went down to the McLoughlin Blvd office of the County Social Services.  Within forty minutes, he was pre-entered for SSI.  Allen was handed the green application forms, and they looked daunting.  I told him we would work to complete them during the upcoming weekend.  The clerk scheduled an intake appointment at SSA in Portland for the following Tuesday.  If Allen were going to live in Multnomah County, it would be best for him to apply for General Assistance there.

 

     We were doing fine on time.

 

     We had nearly two hours free, and I suggested we could do a drop-in visit at the Disabled and Senior Office in Portland for the neighborhood in which Allen's grandfather's house was located.  [The Ladd's Addition office happens to be the best DSO office in the city, and I had contacted an intake and eligibility worker in advance of our "cold call" arrival.  My VRD disability advocate gave me her name.]

 

     In an hour and a half, Allen had finished the application for General Assistance and a complete application for DSO case management.  A complete medical physical examination was arranged for the beginning of January, and all of Allen's records from Clackamas County would be forwarded to that office.  DSO would also use the same neuropsychologist as VRD to get a very complete evaluation of Allen's functioning -- a far more complete test series than that ordinarily requested by VRD.  The results would be with all relevant agencies.  I watched Allen's face throughout the intake interview.  Its lines of tension disappeared, and in the middle of the process when his case manager was out of the room duplicating some materials, he said that for the first time in a month his stomach had stopped hurting.  He was very relieved.

 

     We completed some more paper work.  We were told that no money would be available for at least 45 days.  That would put things in the middle of February, more likely the end.  But we finally had some "dates" we could hang discussions with his mother on.  He was given a printout of his appointment information for the medical examination in two weeks.  He was also handed a bulleted list of documentation to submit to return to complete his application.  DSO wanted information on a life insurance policy, his birth certificate, a bank statement, and a complete list of all doctors that he had seen.  She handed Allen a copy of the list, and gave me one.  [As of this writing, I do not know whether Allen has followed up.  I doubt it, and will mention it to him when I next call or see him.]

 

     As we left, I told Allen I would help him search for a primary care physician within the Regence system.  Regence is Blue Cross/Blue Shield of Oregon.

 

     The rest of the week, he kept his appointments.

 

     The previous week, I had spent considerable time on the telephone with contacts in the health system.  In addition to arranging for his mental health appointment, I also located the special needs case manager for Regence.  She and a partner nurse coordinate services for disabled plan members.  Each HMO that an Oregon Health Plan member can join has such special services unit, but this is a well-kept secret.  Most members discover this service by accident, if at all.  After I outlined Allen's physical and disability issues, she assured me she would open a file and help him coordinate benefits throughout the system.  Allen could call her any time he had a question about referrals to specialists.  He needed to select a primary care provider, however, and to call another number to enter that information.  I had earlier tried the phone mail system for Regence and determined it would be impossible for someone with Allen's disability to understand the menu options.  She agreed to handle the entry information for Allen if he called her.

 

     In anticipation of our application visit to SSA, I contacted staff at ILR for some pointers on what would make the application "fly" the first time.  No one there had any experience with the process.  Not even my own supervisor, who only had experience with VRD.  Knowing that most of the clients seen at ILR are either on SSI, SSDI or some kind of disability status, this discovery was both curious and distressing.  How could staff "counsel" people if they don't understand a significant part of the system that services their consumers?  How could their inexperience possibly be of benefit to the families of disabled consumers considering enrollment in the social security system as a way of securing some financial independence for their member(s)?

 

     That evening, I spent an hour with my VR advocate reviewing the Social Security application form.  She was an expert, having filled them out for countless clients and successfully appealing denials.  She is a scrapper and a straight shooter.  She counseled me about not using language that boomerangs or raises red flags, but also suggested that the first time the application is filed to expect a denial.  Knowing that made the job of filling out the form and answering questions at the SSA office less stressful.  I had arranged with Allen to go over the complete application with him the following day, Saturday.  We were to meet at his grandfather's house.

  

Allen Moves on His Own--a New Wrinkle

  

     On Friday, I called Allen with information about his case manager from Regency.  He had some news.  On Thursday, he and Ron, his friend, went down to the Employment Division and applied for his unemployment benefits.  When he explained the reason for the quit and his not working since, the counter clerk did an earnings verification and said he could file a claim and he would be hearing from the Department by mail.  Because he had filed a claim shortly after quitting his last employer, he wouldn't have the usual one-week waiting period.  He needed his doctor's "return to work" release.  Allen understood her to say he would be receiving money, perhaps as early as the following week.  She asked him whether he would like to apply effective last week, and he answered in the affirmative.

 

     He had just come from a physician's office, and the doctor had signed a full release to return to work. 

 

     "That should do it," he said to me.

 

     Something clicked.  All during our two-month relationship, Allen had mentioned nothing about unemployment insurance.  I hadn't asked.

 

     The doctor he just visited was the physician his step-dad had seen.  He had also seen Allen earlier, although it had been longer than a year since the last office visit.  In the interim, he had only dealt with his cancer doctor.  That doctor had cleared Allen for a return to work following his quit, although Allen wasn't anywhere near ready for return to full time work.  He was still undergoing chemotherapy even as the doctor reported that he was work-ready.  A lot of details were missing.  Why hadn't he received unemployment benefits during the summer?

 

     Before opening that issue up, Allen mentioned that this doctor accepts patients from OHP.  He wants this doctor to be his primary care physician.

 

     Great, I thought.  Allen has a primary care physician.  He can call his case manager at Regency and start the ball rolling.  This doctor will be able to make referrals out for psychological and psychiatric consultations.  During the week I had talked with an advocate who was a former county developmental disabilities case manager now in private practice.  She gave me the names of two counselors skilled in training individuals in life skills and short-term behavioral therapy.  They might be on the Regence list.  If not, and if Regence doesn't have such specialized practitioners, his doctor might be able to refer him "out of system," providing the need was documented.  With Allen's upcoming neuropsychological evaluation and his learning disability evaluation results in hand, that wouldn't be too hard.

 

     During that week, I located an optometrist for Allen.  His glasses had been broken for six months.  In earlier conversations, he described his problems with reading and having eye trouble when he was in grade school.  I thought there was a slim possibility he might have mild vision processing disorder, and called the state's only school of optometry for referrals.  The director of the behavioral optometry teaching sequence was out of town, but I got a list of certified behavioral optometrists practicing in the metropolitan area.  I called four and they said they do not accept OHP patients.  The fifth did.  He happens to be Mary's optometrist, although she didn't know he was a vision therapy specialist.

 

     Perfect.

 

     There was one appointment open before the end of the year.  Allen would have to call himself.  I gave Allen the contact information, which he wrote down.  He called and secured the appointment right after we got off the phone.

 

     I had some news I didn't share with him at that time.  His mother had called Mary.  Allen's truck was "family property."  Her husband, who sold it to Allen, said that it would make no sense to stop paying for it.  For the past six months, family money had been sent to Allen, and through the credit union as an intermediary, sent back to the parents.  Both his mom and step dad realize how important it is for Allen to remain independent, and his own transportation may be very supportive of that.  The stepfather had co-signed the note at the credit union, and he would carry the cost for a while.  At least until Allen got on his feet.  His stepfather would share this information with him soon.  Allen's unemployment benefits would allow him to pay off his debt, at least for a while.

 

     When I got off work, I called Mary with the news about Allen's possible unemployment benefits.  Allen had called his mom, and she called Mary during our phone conversation.  Mary would call me back.  Allen's mom was concerned that his SSI benefits would "cross" the unemployment.  Mary and I talked about time lines and when any of the cash benefits would start to flow.  I called Allen's mom to inform her that SSI would likely take some time to award, and the prospect of being initially found eligible may be dim.  She understands.  She is very relieved about the prospect of Mike's receiving unemployment, and hoped he will be able to pay his bills.  She proposed the phone bill as among the first to be repaid.  She thought that would provide Allen a direct sense of responsibility for taking care of part of his personal debts.    She understood that the UEB would last for only six months, but that it provides Mike with a breather and her with relief.

    

In my case notes for the week, I made the following comments:

 

Closing observations:  [Allen] appears very upbeat.  Having found a primary care physician, being found eligible for UEB, and other supportive news this week has demonstrated his resilience.  His self-esteem has risen, and is evidenced by a lilt to his voice and his own independent actions this week.  His mother seems to be tracking his progress well and is supportive.

 

     That Saturday, Allen and I spent over three hours completing the Social Security application.  I took the completed application and duplicated it so that he would have a copy.  I made extra copies because the information on it was an excellent single-document resource.

 

     On Tuesday, I went over to Allen's house and he followed me to SSA for the intake appointment.  The process took nearly two hours.  Upon hearing about Allen's unemployment benefits, the intake worker said that if he were awarded unemployment, Allen would be ineligible for SSI.  He had Allen sign a waiver to indicate he understood that.  If things changed, all he needed was a little additional information that Allen could phone into him, and the SSI application could then be processed.  Processing the applications could take a hundred days, maybe more.

 

     This was Christmas week.  This and the week following would not be good for paperwork or appointments.  Things would start up again after New Year.

 

     Before we left on our own separate ways, I told Allen that after he returns from visiting his mother and step dad in Bandon over the Christmas weekend, that we should plan on working on his Independent Living Plan.  After having gone through the same process myself just a day earlier at ILR, my supervisor encouraged me to proceed with the ILP for Allen.

 

 Crisis III -- Bad News

 

      The next evening, Mary called.  Allen had called her, very upset, and just as we started our conversation, Allen arrived at her house.  He had received two notices from the State dated one day apart.  Both denied him unemployment insurance benefits based upon an earlier determination that he voluntarily quit his job in April.  Martha faxed both documents to me, and we resumed our phone conversation.  I told them both I would be calling the number shown on the notice and try to get an explanation of the meaning of the notice. Mary was going to do the same.

 

     The following morning I called the Employment Department and spoke with a clerk.  Without a release from Allen, I could learn nothing regarding his claim.  The release form is found in the client handbook.  Rather than call Allen back, I had an appointment that afternoon that would bring me near a local Employment Department branch office and I could pick up the handbook to determine what kind of information it had regarding his appeal rights.  Mary's call had gotten her a bit further into the system, but all she got was the name of Allen's original intake clerk.

 

     Even with no information available, one thing could be done.  Allen's SSI application had been waived due to his statement that unemployment benefits would be forthcoming.  Since that was in doubt and what he had in hand was a denial, he could now file for SSI.  I got off the phone, called Allen, and that afternoon Allen called his SSA worker to open the application by answering a few additional questions.  Although he wouldn't see any entitlement money soon, he was taking the right steps toward his future.  This all took place on the day before Allen was to visit his mother and step dad.  Before he hung up, Allen said that once he would start the SSI claim, he would feel better when visiting them.  He was following all the leads and was on track.  Just to confirm the status of his GA application, I called Allen's DSO case manager, and she told me that whether or not Allen receives unemployment, it is not considered income for the purpose of his state disability case.  It might, however, delay award of his GA claim, but until he actually received money from unemployment, everything was fine and the timetable for eligibility would be unaffected.

 

 Communication Network Issues and Some Self-Disclosure

 

      Upon his return from Bandon late the following Monday afternoon, Allen called me.  The visit hadn't been pleasant, but he didn't want to go into detail.  I was soon to hear that through Mary.  By this time, I was growing increasingly uncomfortable about the three and four way communication that had started out of necessity and now seemed to be a part of the warp and weave of the case.  Due to the intervention of the holiday past and the one coming up, I wouldn't have a chance to discuss my concern with the clinical supervisor at ILR.  As things turned out, I found the arrangement to work to my tactical advantage later that week.  But that, I said to myself, is just about as far as I would take it.  Something had to give.  There were obvious boundary issues involved.  Opportunity for miscommunication was built into the scheme.  An unhealthy pattern of convenience -- dependency, really -- had emerged out of a purely mechanical arrangement.  Since I wouldn't have an opportunity to engage all the significant actors at the same time and in one place, the process of unhooking from this process and substituting more transparent lines of communication is something that must be built with the cooperation of all the actors.  Motivations could differ, but the means of communication had begun to define a dynamic that was cumbersome from the start, and was proving counterproductive in the long term.

 

     The relationships between Allen's immediate family, his family friends and me required clarification.  There was no doubt in my mind as to my primary responsibility to Allen.  What was unclear was the effect of the day to day wash over in time, the non-synchronicity of the exchange of critical information.  One of my boundary issues was being put to a test.  It was a matter of proportionality, really.  In my desire to assure that every actor was on the same page, I had not played an honest broker.  On numerous occasions, I withheld information until I felt the time was right, or until another actor passed it directly to the addressee.  While justified by necessity at the beginning, I soon found myself feeling like an apprentice puppeteer.  I would pull one string, and the puppet would move in an unintended direction, or perhaps not at all.  Other times, because of the expectations that had been built up by this system, I was expected to act when it was better that I didn't intervene.  The expectation came from others in the system, but I was having a hard time distinguishing between the expectations of others and my own need to be sure that all details were being accounted for.

 

     An important piece of work awaits me.  I must unravel lines of communication while remaining connected.  A new paradigm must be substituted for this one.

 

     Autism is like that.  Boundary issues, differentiation of experience, challenges with generalization, lack of clarity about the intentions of others, or indeed, about one's own thoughts are part of the territory.  No matter how well I "understand" the concept in the abstract, under conditions of stress that I frequently fail to recognize in advance or even during the event, my judgment is impeded.  This isn't quite the same effect as sensory overload when my system just shuts down.  I've gotten quite good at recognizing that, and I take steps as often as possible to avert complete shutdown by removing myself, or announcing my discomfort and lowering my threshold for stimulation.

 

     But this, this is more subtle, more invidious.  Here, the stress is largely, self-imposed, pressed upon me by a brain that retains every small detail, and by a constitutional need I feel for completion and closure.  While these are feelings attendant to all who serve others, I have recognized in the past that these could well be significant impediments to my ability to deal with these issues on a professional day-to-day basis.  They are why I was first attracted to but fled law realizing while I was fleeing that I wanted black and white answers to wispy gray issues.  Social work classes drummed to the same rhythms in my brain some twenty years later.  That time, ten years ago, it was my forest-for-the-trees cognitive challenge.

 

     Then, not only could I not turn off my brain when everything else in my body told me to do so, I couldn't widen that beam on my search light to see the next tree, and the next simultaneously.  I didn't know that was what was happening.  Because I couldn't articulate the unknown, my panic and confusion was global, and it took me a long time to recover from the debacle of crash and burn at graduate school in social work.  Looking back at that experience a decade later, I still marvel at my life-long incapacity to see the same warning signs and yet to plunge headlong over the cliff, lemming like, driven by an awesome kind of mental inertia common to those with autism.   To those neurobiologically differently brained.  And like many of my neurological cousins, I bear a grudge long after a traumatic event.  I still bear ill will against a system unyielding to idiosyncratic differences between students or their learning styles.  But that's another topic for another day.

  

Up to Date and Closing Notes on Allen's Case

 

      By midweek the last week of December, the dam broke.  There was no flood, because the pond behind the dam was frozen solid.  For the next week at least, things would exist in a time warp.  Events would occur, yet their attendant aftermath would be delayed.  Shock and the numbness following a loss of such magnitude does that.  It protects us from thinking too much about the future.  For the moment, anyway.

 

     Allen's grandfather died Wednesday night.  Mary called me at home to announce the news.  His mother would call him the following morning.  She and her husband would be coming up to attend to matters.  The funeral was set for Monday after New Year.  All the sisters were expected to arrive by Friday.  There was much to do, but Margaret was handling the funeral arrangements as the sister physically closest.  Earlier that day, Allen had asked me to duplicate some papers for his SSI claim, and I had picked them up from his mailbox.  I told him I would return them as soon as possible, but that my day was full.  Tomorrow would be fine, he said.

 

     When I went over to the house the next morning, Allen greeted me from his usual place inside the house with a "C'mon in."  He's a big man, and getting up from the sofa, his easiest chair, is a struggle.  He has learned to open the door in advance.  I dropped the papers on his stack of documents on the kitchen table.  Matter of factly, he told me that his grandfather had died.  He found out about it last night, just after his aunt had left the nursing home and he arrived to visit.  "It was quick, the nurse said. "Must have happened just after your aunt left.  Couldn't have been more than a moment," she said.  Allen reported that conversation with great deliberation.  "I already knew when Mom called this morning," he said.

 

     After expressing my condolences, I asked him whether there was anything I could do for him.  No.  He had errands to run.  He had committed himself to continue cleaning his apartment.  "Yes," I said somewhat absentmindedly.  "And you are doing some good work here."  I had smelled Pinesol the moment I opened the front door.  Then he said, "I can't cry.  I want to but I can't."  It will come, I told him.  Maybe this weekend, maybe later, but it will come.

 

     Since he was bringing some papers over to Social Security, he was also going to go down to the Employment Department with a release that he had signed the day before.  I had found an attorney interested in his case, and the release named both the attorney and I as persons authorized to see his file and discuss his case with the officials.  I also brought a formal letter requesting an appeal of the denial of his claim.  He had twenty days to perfect the appeal, and we were already a week into that time.  My letter was formal, a bit rambly, but to the point.  In it, I opened up the ADA issue, and provided just a hint of additional information that warranted a re-opening of the decision.  Allen wanted to say things to the hearing officer, so I requested that unlike most hearings conducted on the telephone, this hearing be conducted in person as a reasonable accommodation to his disability.  I also requested a delay to the hearing date to allow Allen to secure documentation to support his appeal.

 

     I left for work and the day drifted to an end.  That evening, Allen called me at home saying they refused to accept the release or the letter.  They handed him an "official" form for requesting an appeal.  I had covered all of the identifying information in my letter, but didn't make a big thing of it.  Bureaucrats, officious, small-minded bureaucrats I said to myself.  "So," I said to Allen, "we'll play by the rules.  I'm coming over to collect the form, I'll make copies, and we can work on it in the morning.  Then we will both go together to the Employment Office and present the release and the form.  That means we will be able to view your records and maybe get the office to copy them for you."

 

     That's what we did.  I worded the appeal and request for hearing form to include each of the issues outlined in the letter and asked for the same accommodations.  Allen signed the official copy of the form, and I followed his truck down to the Oregon City Employment Office.  The clerk who processed his claim a week before, on hearing us ask for an in-person hearing, poked his head around an office partition and said that was not possible.  "Oh yes, it's possible, and it's going to happen," I said.  "And you had better read the department's own ADA handbook and learn about what 'reasonable accommodations' means.  Please go back to your desk and attend to your own affairs.  We've got this handled."  In ten minutes, we had a date stamped receipt of the original request and release, and a clean copy of Allen's complete file.

 

     Now maybe I was a bit harsh on the clerk, but I don't think so.  Bureaucratic ciphers flying their desks have rules they have to obey too.  Some of them don't know all the rules, so sometimes they make them up, especially if they think they can get away with it with a vulnerable, uninformed claimant.  Allen had been disrespected just once too often, and I was not going to let this official act of arrogance go unnoticed.  Besides, there was nothing to lose.  The hearing wouldn't take place there, and this might provide an object lesson to his colleagues.  You don't mess with claimants, and you had better know what you are talking about.  Never can tell who you are talking to, either.  So, I let him "have it."

 

     Allen was pumped.  It was going to happen.  Finally he would get to tell his story.  Finally, someone would listen.

 

     We were a block from the doctor's office.  I suggested we drop in and see whether Allen could have a blood sugar test to check on his diabetes, even if he couldn't see the doctor.  We were in luck.  The doctor had a cancellation for Friday.  Only fifteen minutes.  But it was better than the appointment that had been set for the beginning of February.  He could get the lab test, and he could ask the doctor for a return to work clearance, this time for light duties.  This more accurate reflection of Allen's actual condition and capacity would work in his favor for his appeal.

 

     We had a little time left.  How about going to the post office and putting in a change of address form?  That way, all the mail that has been piling up there for a couple of days at a time will come straight to you."  So we drove to the edge of nowhere -- Oregon City does have a nowhere, and amidst the scrub weeds of vacant lots all around was the new postal facility.  I noticed something as we approached the front doors.  No wheelchair switch.  The post office was completed three months ago, and didn't have a means for an independently mobile wheelchair operator to open the doors.  It had no Braille signage, and it didn't have the "alternative assistance" notices common to many public service facilities.  We went to the counter I filled out the form.  Allen still didn't have his glasses.  He had his eye appointment the next day.

 

     As Allen handed the form to the clerk, I asked to see the facility manager.  Yes, she was aware of the problem.  The clerk next to her said that she was disabled, and had gotten a parking spot right next to the employee entrance.  She was also the safety officer for the site.  Did the facility have an ADA officer?" I asked.  Well no, the manager said.  "Suppose you appoint her.  She seems to know something about reasonable accommodations," I suggested.  "Maybe a report to your postmaster from the safety and ADA officer of your own postal facility might get some better attention."  I handed her my personal card, and wrote the name of the ILR ADA State compliance officer on the back, plus the phone number.  I explained that Denise would be glad to come down and discuss a compliance plan for the building with the postmaster.

 

     Perhaps this bit of officiousness wasn't necessary on my part.  But my dander was up, and the previous visit to the Employment Department had raised my antennae a bit.  I knew that Allen was embarrassed a bit by this, but Allen is not used to asking for what he wants unless he knows it is OK.  This, I explained to him, was OK.  Had I been a person in a wheelchair, I might have really had an attitude.  "I could see that," he said.  "Maybe you did someone a favor."

 

     In three visits, Allen had seen advocacy first hand.  Maybe mine is not the best behavior, but Allen has his own style, and he is a quick learner when he needs to be.  Maybe thinking of himself as a disabled person may quicken his learning.  I don't know.  It's just a thought.  Of course, I hate to think of too many "me's" around.  We all have our own style.

 

     Earlier in the day Allen had asked me to copy his W-2 form from last year for his SSI application.  I also wanted to copy his complete Employment Department File and provide that to him for his records.  That evening, I went to the house and noticed another vehicle in the driveway.  Allen's truck was not there.  The house had only one light on inside.  I knocked, and after identifying myself, Allen's Aunt Lisa let me in.  She had come down to see what could be done.  She'd have to go back to Dalles, but would be back on Saturday.  Lisa was the "missing sister."  We talked for an hour.  Although she lives in Dalles, she is actually closer than his mom and step-dad in Bandon, and she may be taking more of an active role with matters in Portland.  She came in to see to cleaning of the house, since Allen's toilet sanitation had been a major source of concern to her sister, and to his mother during his visit to Bandon.  She had met Margaret earlier that afternoon, and both sisters worked to clean both bathroom toilets and prepare the bedrooms for the over weekend stay of the family.

 

     Lisa was relieved that for the first time, her nephew appears to be in the hands of a support system that will work systematically with all of his challenges.  My direct assistance would fade once Allen hooks up with direct service providers in the community.  We briefly discussed his future housing;  Lisa asked about a group home, but quickly recognized that Allen's functioning is too high for that.  We did discuss having a caretaker or a trainer come in and help Allen learn to take care of his environment.  I mentioned the ILR/Housing Authority of Portland preparation classes as well as other life-skills counseling available in the future.

 

     Following my visit to the house, I called Mary to fill her in on Allen's Friday plans and outline my conversation with Lisa.  I mentioned that we are all a part of Allen's larger support system, and except for things said in confidence, I would encourage each member of his family to do what they felt was possible in providing Allen support and guidance towards independence.

 

     On New Year's Eve, Allen called me at home to say that he has a second appointment with his Oregon City mental health counselor, and that his new doctor had signed a conditional release to work with limited duty.

 

     The previous evening Mary had mentioned that Allen didn't want to go to the funeral.  I asked him in a nonchalant way whether he would be going.  He said was thinking about it, but his grandmother's funeral years ago was so bad that he would maybe not go.  I did some "what if" problem solving with him over the phone, mentioning the factor of his living independently as an adult, being part of a family, and the kinds of things which draw families together sometimes, such as the death of a relative.  Under those circumstances, I suggested, some family members go through motions just to keep the peace, though they might not otherwise speak to one another.  He understood.  I suggested that if he would decide, on his own, to go, that would demonstrate a choice that everyone would know was difficult for him to have made.  It would also prove his mother wrong, for what that was worth.  She fully expected him to be an "absent problem" on the day of the funeral.  Allen said he would think about it, but was now leaning towards going.

 

     As soon as Allen hung up the phone, Mary called me to warn me that Allen's mother would request a meeting between herself, her son, his stepfather and myself during the weekend, and that she would be calling me once she got into town.  As Mary characterized her friend's interest, the family huddle looked more like a "gang up."  What Allen's mother wants is for me to amplify anything she and her husband says to Allen.  Knowing that her feelings shift unpredictably from minute to minute, and from day to day, I had no intention of being a part of such a dynamic.  My primary tie to the family was through Allen, and he was struggling for independence from just such events.  I told Mary that due to the grandfather's death and the upcoming funeral, now would be the worst time to consider any work with the family.  Later maybe, but under conditions comfortable for Allen.  This was not the time.

 

     Within minutes of Mary's call, Allen's mother phoned.  She had just arrived, and wanted to have a meeting.  Without explaining my reasons, I told her that my commitment for the weekend was full.  This was true.  I had an assignment deadline to meet for a class, and revision of two chapters due on my book by Monday.  On Monday, I was to undergo a minor medical procedure requiring sedation, and I would be in no shape to meet with them.  Problem solved.  A white lie here and there, perhaps, but mostly true.  Besides, my real reason for declining the request had much more to do with shielding Allen from any such event.

 

     Allen called me on Monday to say that he had attended the funeral.  He felt good about that.  He has a second counseling appointment this week.  He will continue cleaning his apartment.  It's a mess, he says.  He asked me for some names and phone numbers of his contacts with service providers.  He had misplaced some correspondence.  Allen still needs help establishing a records system for himself.  We'll work on that, I say to myself.

    

 And that is how matters stand.

  

[POSTSCRIPT to Allen's case:  Allen was awarded SSI/SSDI without having to appeal an adverse finding to the SSA Office of Hearings and Appeals.  This was my first Social Security case.  I was to have many more, all except two resulting in awards of benefits without the need for appearance before an administrative law judge.  RNM 2005]

 

 

SOME THOUGHTS ON CASE MANAGEMENT

AND THE PEER COUNSELOR ROLE

 

 

     Throughout this paper I have identified classical ethical and policy issues needing address through a deliberative, thoughtful process at the Independent Living Resources Center, Oregon's primary center for independent living.  Some of the challenges I face are those of any counselor, and in discussions at the policy formation level, I hope to distinguish what is truly a personal issue for me, and what may be systemic issues.

 

     In the opening pages, I identify a number of them, and throughout this paper, others appear as "new territory" concerns.

 

     The most challenging matter I see is holding a formative discussion on the responsibilities of the volunteer peer counselor in the midst of a role definition vacuum during which counseling of a special kind is already taking place.  My own practices may or may not prove effective in the long run.  They may or may not be what was envisioned of volunteer counselors as we underwent our training.  Or perhaps there was no clear idea of our role, and the training went ahead powered by a momentum set in motion and seemingly impossible to question or to stop.

 

     As a center for independent living, ILR is a consolidation of several pre-existing disability advocacy and service organizations drawn together under one roof by necessity of the flat federal funding of each of its separate programs in an era of rising costs.  During its short life of six years, the ILR management and its board of directors have never assessed the effectiveness of any of its programs.  Not in a formal way, anyhow.  Not with deliberations, and thorough, detailed consumer satisfaction surveys.  And not with any written reports by either staff or outside consultants.   Recently, there was an assessment of a single program the center undertook and which it had allowed to grow to an unmanageable extent.  Things had gotten so bad that the interest for evaluation was not so much with assessment of the effectiveness of the program as it was face saving and protection of the center from a further deterioration of its "street reputation."  The very program committee that contracted with her doesn't know the fate or wording of the report by the independent consultant.  If her report has been made, it has been to the board only.  Perhaps for reasons of keeping the peace, the one board member who sits on a combined staff and consumer program committee has let the report "die" even though the board has read it.  What took four months of heated program committee discussion may never see the light of day.  Not by consumers, anyway.  In the past, when there have been comments solicited from consumers, the questions are self-serving, loaded, and few in number.  With any results, a program or particular service would appear to be very effective.

 

     Very recently, the organization underwent the firing of its first Executive Director and the hiring of a replacement, the strongest among the weak field of candidates.  Better to take the one who looked the best, while still turning away from confronting the real problems between management and staff, staff and staff, staff and volunteers, and director and the board.  It was not an easy hiring decision.  Individually, members of the hiring committee contacted a former staff person who had just been terminated mainly because she was an effective consumer advocate and was unafraid to stand her ground.  They wanted to be sure.  They wanted her imprimatur, and she gave it.  Reluctantly.

 

     The new director comes with an interesting past, and connections that are even more interesting.  If she is disabled, she has adapted to the point where most people are unaware of it.  More importantly, her entire background has been with the state vocational rehabilitation system.  Thus, at an "independent" living resources center we have an Executive Director with no independent living values experience, and a total career built in an agency often seen as the problem rather than the solution within the disabled community.  She does have executive and management skills, however, something the previous director lacked.  Totally.

 

     But, there is the issue of values clash.  Her ideas are a breath of fresh air.  For an agency struggling for funding, she proposes formal contract for services arrangements with the very agency she left.  And there are other similar sources of cash.  She proposes variations of a case management philosophy totally at odds with independent living center values as pilot projects.  Just as in the past, ILR may find itself in even greater non-compliance with the policy of RSA funded centers for independent living.  All, of course, with the noblest of motives.  Agency survival.

 

     But at what cost?

 

     To the very values of what distinguishes independent living philosophy from every other humdrum agency.  To the likely abandonment of their already tenuous relationship with the center by consumers who know things aren't right and are becoming less so with every day the staff waffles and weaves in its dance with them as clients.  This time the center has a person in charge with management experience.

 

     But not independent living values.

 

     It will be interesting to see who the agency hires as its present staff turns out for different jobs.  What will be their values, and to whom will they defer for validation of their contributions?  The enthusiasm she brought during the first several months of her tenure is one borne of apparent action.  A lot is happening.  There are management meetings held with a religious adherence to schedule unlike the past.  There was a staff retreat at which the staff and director were expected to get to know one another better.  Thank you.  It was too soon after her hire.  Too soon following the undignified departure of her predecessor.  All but a few of the present staff still clutch their updated resumes, prepared during the past year of the previous director.  A few have left.  Two have been fired for unprofessional conduct.  And the others hold their breath and their peace.

 

     It is in this environment that I operate as a volunteer.  On more than one occasion, I have been the bearer of news gleaned at ease from one level of management to a program committee meeting.  The news sure travels fast, the Executive Director says.

I nod, knowing that had the news not traveled, it wouldn't have become known at all.  That we would continue our discussions, as in the past, working with platitudinous assurances of staff well primed for these meetings, well primed to provide answers that are maddeningly circular and full of "I'll look into that's."  Oh, if only one meeting was held where the looked-into items were presented as complete reports.  Not likely to happen.  This director is remarkably open and candid.  As a manager, she has a direct style and responds to unsettling questions well.  She doesn't experience them as personal attacks on her integrity, as had her predecessor.  She's a pro.

 

     But she's an agency pro.

 

     Is that what it will take to preserve what is left of CIL philosophy?  One could say the jury is out.  Sometimes, lawyers plan on juries being out a long time.  Hung even.  But in this case, the persons in the dock are the consumers of the agency.  Just how long are they expected to wait for services promised but undelivered?  One small example comes to mind.  Last year about this time ILR management sent one of its articulate employees to a panel discussion of service providers televised and broadcast by community television.  A small audience, surely, but one which follows particular community-centered topics with avid attention.  The staffer was to follow a script describing a new program to be offered by ILR.  There was only one problem.  There was no program, there was no staff, and the entire script described an out and out misrepresentation of ILR's capacity to serve this new, intended group of consumers.  The staffer gagged on the script, but delivered as ordered, looking much like one who eats pickles as a breath sweetener.

The calls came to ILR.  Some three hundred of them.  The receptionist was given the task of turning each caller away with words to the effect that "We aren't quite ready yet.  Please call us later."

 

     All very polite.  Well handled it was.  And now one wonders what the street value is of the agency's reputation to deliver as promised.

 

     It is in the midst of this policy and competency minefield that I operate alone.  The assignment I chose for this paper was to discuss the staffing of a person-centered-planning team of players working on a real case.  I couldn't really follow the outline as suggested, so this paper has come as close as I could make it to a discussion of the issues involved in such work, with my own foibles thrown in for the reader's relief.

 

     I have demonstrated the challenges involved of working as a case and resource manager, as a volunteer to an agency for which case management, by all traditional standards, has been anathema.  Yet in setting up a peer counselor program of volunteers, one that to this day has failed as a program, the agency set into motion that very clash of values that distinguishes it from traditional service organizations.  If one discovers that a consumer one serves comes from such a condition of learned helplessness and dependence, and family enabling of the same, what is one to do?

 

     Is there not a point of departure in such cases?  Is there a way of helping the consumer move from an untenable state of affairs where certain persons are in charge but aren't in charge at the same time, to a condition where the consumer himself is in charge?  And what about consumers who have substantial cognitive challenges, but otherwise function rather well?  Can one turn one's back and say, as has been said in the past, "We don't have that breadth of experience here.  No one is trained to deal with these kinds of non mental health issues."  Is that truly the answer consumers want to hear, many of who do not know the extent of their limitations, nor have they a clear, positive notion of their skills, talents and abilities?  That would sound to me like a governmental agency telling its claimants what it can't do for them, and being proud of its rejection or denial rate for first time applicants.  That's been a complaint about SSA for years.  It's a complaint one hears about any agency with limited resources and the ability to gate-keep on its own terms, much to the mystery of uninformed consumers.

 

     This can't be the official stance of a CIL.  Everyone knows that such language is verboten.  But action and inaction constitute the paralanguage of individuals and institutions, and the nonverbal messages of gesture, the appearance of a dreadful seriousness on the part of direct service staff...all of these messages don't go unnoticed. 

I am a stranger to such language, and my being an outsider "in" the ILR places me in a weird position.  Even had there been a successful peer-counseling program, I might have been the dancer with three feet anyway.

 

     I've an excuse, of course.  I'm autistic.

 

     But really, that one doesn't fly any better than a "we can't serve because we don't know how."  Well, if you never try, you'll never learn.  For agencies as well as for individuals, the public taking of risk is what advocacy is all about.  First and foremost, those of us "with" have a right to be advocates for ourselves.  But secondly -- and this doesn't come far behind -- we have special reason to advocate for others a little less sure of themselves than are we.  You know, the old "There but for the grace of God..." That seems to work pretty well in making people feel guilty.  But the adage has its own power beyond that of being a vehicle for making people feel bad about not being good.  There is something ennobling about a person who really operates as much from that premise as he may from his own selfish needs.

 

     It is in tension between the "ought" and the "is" that human potential is realizable.  For every "No" in a person's life, there was a "Yes" suppressed.  It is towards the rediscovery of those answers, and their affirmation by others, that I have dedicated what time I have left for myself, and by unselfish extension, to others.  Those who carry the story of a less than able person about with them are life-changers and life-chargers, the same as one would find at quick charge battery stations.  Small contributions, small supportive efforts from others are what enriches the tapestry of life.  And it is to those ever renewable and inexhaustible resources that "persons with" can turn.  It takes time, perhaps.  A cart lumbering long along a rutted road takes effort to stop, let alone turn.

 

     But turn it may, and it is with the hope of that turning that I do my work.

 

 

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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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