POLICY AND PROCEDURAL CONFLICTS

POLICY AND PROCEDURAL CONFLICTS IN A

CENTER FOR INDEPENDENT LIVING

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:

Employment. A job, any job for the time being
Replacement glasses (correction unspecified)
VRD case management
Assessment for Specific Learning Disabilities and Neuropsychological Full Adult

Functioning Evaluation

Anger management counseling
Health: cancer survivor support [to be recommended in the next meeting],

weight loss counseling and nutritionist-dietician consultation; depression

management (response to cancer and protracted unemployment); Hypoglycemia

(prediabetic issues--family history of diabetes)

Physical conditioning and healthy exercise - exercise and fitness counseling and training
Counseling on money management

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:

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

Ø Resource development and management

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

Ø Diabetes support

Ø 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.