Chapter 3 - Case Management Service Users Saying PDF

CHAPTER 3 Copyright © 2021. Canadian Scholars. All rights reserved. What Are Case Management Service Users Saying? The term client is itself problematic for many. For one, it implies “clients” are different from the people who serve them—that their feelings, aspirations, and struggles are not the...

CHAPTER 3 Copyright © 2021. Canadian Scholars. All rights reserved. What Are Case Management Service Users Saying? The term client is itself problematic for many. For one, it implies “clients” are different from the people who serve them—that their feelings, aspirations, and struggles are not the same as those of many others. This is, of course, not true. While some do struggle with intrusive visions or thoughts that sometimes seem out of control, or physical infirmity, or difficulty grasping some concepts, most struggle more with attitudes that infantilize them or relegate them to subhuman status. Most “clients” also struggle with poverty, with being marginalized or segregated from others. They wrestle with discrimination and the good intentions of those who think they know what is best for them. They are too often left out of policy and program discussions, even though they are the ones who have to live with the outcomes of decisions made by others. They may be “token” representatives on boards of directors, with no real power to make decisions that will ultimately affect them. Many service users resent being treated in this manner, while others embrace dependency as a way to cope, sinking into a well of learned helplessness. In many ways, by not examining itself, the service system contributes to both, and as professionals, perhaps it is time to ask ourselves, “Is this what we intended?” PROFESSIONAL ABUSE OF POWER Too often, decisions that professionals make for others “in their best interests” have harmful or even lethal effects. There are numerous instances where professionals—­ biomedical, social work, gerontology, or those working with young people—­have abused their power. Spindel, P. (2021). Case management from an empowerment perspective, fourth edition : A guide for health and human services professionals. Canadian Scholars. Created from humber on 2024-01-07 02:55:42. 44  CASE MANAGEMENT FROM AN EMPOWERMENT PERSPECTIVE One particularly insidious example is the dangerous medical experiments conducted at Philadelphia’s Holmesburg Prison over decades. An ambitious doctor and pharmaceutical companies conspired to exploit barely literate inmates, conducting unnecessary skin grafts and causing drug-­induced psychosis (Films Media Group, 2004). Rae Unzicker (n.d.) wrote a compelling treatise on what it is to be a mental patient, which is available through the anti-­psychiatry movement. In it, Unzicker poignantly describes the negative impacts of the system intended to serve individuals with psychiatric disabilities. In addition, some Internet sites document malpractice by social workers and offer assistance to their victims (Americans for Open Records, n.d.). Press exposés of abuses in child welfare abound. A notable example is the CBC documentary on the death of Jordan Heikamp, who died of starvation while under the supervision of the Toronto Catholic Children’s Aid Society (CBC News, 2001). Perhaps the most wounding experiences of all are caused when professional vigilance either breaks down or aversive practices are condoned by professionals who should know better. Some examples include the use of aversive conditioning against children and adults with developmental disabilities. Some professional organizations even continue to promote aversive practices in some circumstances. Copyright © 2021. Canadian Scholars. All rights reserved. Although many persons with severe behavior problems can be effectively treated without the use of any restrictive interventions, restraint may be necessary on some rare occasions with meticulous clinical oversight and controls. In addition, a carefully planned and monitored use of time-­out from reinforcement can be acceptable under restricted circumstances. Seclusion is sometimes necessary or needed, but behavior analysts would support only the most highly monitored and ethical practices associated with use. (Vollmer et al., 2011, p. 103) Suggesting the use of seclusion, physical restraint, and isolation could be used in “most highly monitored and ethical practices” is contradictory; truly ethical practices would find it both unnecessary to use these aversive methods and morally objectionable to bring them into practice. Further, the use of such aversive methods is in direct contradiction to what disability rights advocates have demanded: We are writing to ask the above Government agencies and human rights organizations to take action to put an end to the use of electric shock, Spindel, P. (2021). Case management from an empowerment perspective, fourth edition : A guide for health and human services professionals. Canadian Scholars. Created from humber on 2024-01-07 02:55:42. Chapter 3   What Are Case Management Service Users Saying?   45 other painful and aversive procedures, seclusion, unnecessary restraint, and food deprivation—­a ll inhumane and unnecessary methods of behavior modification used in some schools and residential facilities for children and adults with disabilities in the United States. This letter is signed by 31 disability organizations concerned with the humane treatment of people with disabilities. (Weiss, 2009) Copyright © 2021. Canadian Scholars. All rights reserved. This is a prime example of where professionals, believing they know best, directly challenge and infringe on the rights of people who have been labelled, essentially ignoring the voices of their advocates. On July 11, 2012, the American Association on Intellectual and Developmental Disabilities (AAIDD) issued this position statement: Some people who have an intellectual or developmental disability continue to be subjected to inhumane forms of aversive procedures as a means of behavior support. The American Association on Intellectual and Developmental Disabilities (AAIDD) condemns such practices and urges their immediate elimination. The aversive procedures to be eliminated have some or all of the following characteristics: 1. Obvious signs of physical pain experienced by the individual. 2. Potential or actual physical side effects, including tissue damage, physical illness, severe stress, and/or death. 3. Dehumanization of the individual, through means such as social degradation, social isolation, verbal abuse, techniques inappropriate for the individual’s age, and treatment out of proportion to the target behavior. Such dehumanization is equally unacceptable whether or not an individual has a disability. This statement is intended to articulate important values and principles and to challenge the field of developmental disabilities to promote research activities leading to identification, testing, implementation, and dissemination of non-­aversive alternatives to address severe behavioral disorders. Specific regulations regarding research, clinical practice, of individuals in making professional judgments are the province of regulatory agencies, funders, and certifying bodies. Despite this statement being issued nearly a decade ago, the use of physical and chemical restraints is still widespread in nursing homes and hospitals (California Advocates for Nursing Home Reform, 2017). Spindel, P. (2021). Case management from an empowerment perspective, fourth edition : A guide for health and human services professionals. Canadian Scholars. Created from humber on 2024-01-07 02:55:42. Copyright © 2021. Canadian Scholars. All rights reserved. 46  CASE MANAGEMENT FROM AN EMPOWERMENT PERSPECTIVE In the past decade, law firms have taken up the challenge of this abuse of professional power in the name of “protecting residents.” A quick Google search of “nursing home abuse lawyers” will turn up pages of law firms actively pursuing abuses in nursing homes. Institutionalization has long been a serious problem for any person with a disability, but especially for people with developmental, physical, age-­related, or psychiatric disabilities (Nursing Home Abuse Resource Center, 2013). In Ontario, young people with intellectual disabilities continue to be forced into nursing homes, despite continued exposés in the media over decades (CBC Radio, 2015; Priest, 2004; Sedensky, 2011). This practice has persisted long after Premier Kathleen Wynne apologized for the institutionalization of people with intellectual disabilities in large institutions in Ontario, where they suffered serious abuse and neglect. Premier Wynne admitted “their humanity was undermined” (National Post, 2013). Individuals are instead being placed in smaller institutions and nursing homes, where violence, abuse, and neglect continue to be rampant, and inspection services seem unable to address it (CBC News, 2013; Seth, 2015; Trotter, 2016). Some families are now suing nursing home corporations (Rinaldo, 2017). In her landmark article “Spirit Breaking: When the Helping Professions Hurt,” Patricia Deegan (1990) of the M-­Power organization in Massachusetts echoes the feelings of so many others when she speaks of how institutions have caused some professionals to lose their humanity and their sense of compassion. While institutions are dehumanizing in many ways, they are not the only structures that, either deliberately or inadvertently, dehumanize people in order to receive “services.” Services in the community were supposed to reduce the levels of dehumanization present in institutions, but sadly, they have not done so in many cases, as reported by those who use community-­based case management services like ACT. In some cases, an absence of services or the unwillingness of community service providers to advocate to prevent institutionalization of their “clients” has resulted in placement in nursing homes or other institutions. Service providers, afraid their government funding might be threatened if they speak up, abandon their individuals to institutions rather than fight the systemic advocacy battles needed to keep them in the community. Some case management services, like assertive community treatment, have actually transported the institution to the community by describing their form of service provision as “a hospital without walls” (Gomory, 1999, 2001; Spindel & Nugent, 2000). They have relied much too heavily on health professionals to ensure “medication and treatment compliance” by “clients.” Spindel, P. (2021). Case management from an empowerment perspective, fourth edition : A guide for health and human services professionals. Canadian Scholars. Created from humber on 2024-01-07 02:55:42. Chapter 3   What Are Case Management Service Users Saying?   47 Copyright © 2021. Canadian Scholars. All rights reserved. ATTITUDINAL BARRIERS The author’s interviews with case management “clients” produced a litany of complaints about how case managers conduct themselves. They also produced comments about what makes some case managers especially helpful. Some individuals reported encountering case managers who seemed to have given up on them before they started. They appeared to believe that not much would change in their lives, and when they attempted to share their thoughts and feelings with their case managers, they were often rebuffed and not heard. Many simply gave up in frustration or began resisting or acting out their frustrations. Often, they then had “difficult” or “resistant” added to the list of stigmatizing labels they already carried. The Pygmalion effect is well known in the educational literature, but this information appears not to have reached the human services community. The Pygmalion effect describes how others live up or down to our expectations of them (Rosenthal & Babad, 1985). When we place limits on what individuals can achieve, in the interests of ensuring that their goals are “achievable,” what we really do is create road blocks to people’s aspirations. Too often, professionals suggest someone’s goals are “unrealistic,” not realizing the power dynamics inherent in that statement and the implication that “professional knows best.” This attitude robs people of the right to try things, to make mistakes, and to learn for themselves what is and is not “realistic.” There is an underlying attitude that the people being supported are children who need to be protected from themselves. This is the opposite of what practising in an empowering way looks like. As we mentioned in Chapter 2, some professionals struggle with control issues themselves. As a result, they attempt to control what the people with whom they work think, say, and do. Service users have often said they feel coerced by case managers who want them to do the things they think are “best” for them. Women in domestic violence situations have reported being harshly judged by some professionals who cannot understand why they return to their abusive partners. Many of these professionals have no idea how persuasive threats of violence against a woman, her children, or her extended family; threats of legal action for custody; or threats of being cut off from financial means can be. Professionals would do well to understand how serious these threats can be. In many cases, the abuser claims they will find and kill their partner, and the statistics show that these are often far from empty threats (O’Hara, 2017; Russell, 2014). For some, the fear is enough; others may have personal experience with a situation where the threat was all too real. Spindel, P. (2021). Case management from an empowerment perspective, fourth edition : A guide for health and human services professionals. Canadian Scholars. Created from humber on 2024-01-07 02:55:42. 48  CASE MANAGEMENT FROM AN EMPOWERMENT PERSPECTIVE Younger people may talk down to older people in infantilizing ways that they find demeaning (Salari & Rick, 2001). Some case managers hold negative stereotypes about older people, reflective of society at large, that interfere with relationship building and can cause older people to feel disrespected and powerless (Levy et al., 2014). PROFESSIONAL ENMESHMENT At the other extreme, some encountered case managers with very weak boundaries, who were unable to differentiate between their own lives and those of the people with whom they worked. These case managers became enmeshed in their interactions with people, and some even appeared to attempt to resolve their own personal conflicts and regrets by exerting undue influence on their “clients” to live their lives in prescribed ways. One man described a worker so consumed with “doing anti-­oppression work” that she could not hear his pleas: there were specific skills he wanted to acquire and personal changes he wanted to make. He tried for weeks to convince her that, while he had had difficulties with “the system” and with discrimination, he wanted to focus on what he was able to control at that moment in his life. The professional, feeling he was simply misguided and needed “educating,” lost him when he finally gave up on her and refused to continue to work with her. This worker’s personal feelings of having been a victim of injustice distorted her encounters with the people with whom she worked to the point where she was unable to differentiate their aspirations from her own. Her personal ideology eclipsed the needs of individuals with whom she worked. As a result, she was unable to support the people she was supposed to be helping. Copyright © 2021. Canadian Scholars. All rights reserved. GOOD INTENTIONS, BAD ATTITUDES Some people spoke of “attitude” in their workers, of workers sitting in judgement of them or trying to influence them to change their lives the way that they thought their lives should be changed, without really understanding much about their situations. Sitting in judgement of someone, without knowing who they truly are or what brought them to the place they are now, is part and parcel of a much larger problem—­the problem of people not listening to one another and making no effort to understand another’s perspective. People feel emotionally bruised when others judge them—­often harshly and unfairly. Spindel, P. (2021). Case management from an empowerment perspective, fourth edition : A guide for health and human services professionals. Canadian Scholars. Created from humber on 2024-01-07 02:55:42. Chapter 3   What Are Case Management Service Users Saying?   49 This speaks to a lack of attunement between professionals and the people with whom they work. If we take the time to hear peoples’ stories, it becomes easier to understand why they make the decisions they do or behave the way they do. We are less likely to engage in judgement when we understand where someone is coming from, what they have been through, and the beliefs that guide them. Perhaps another problem is that professionals may be judging themselves too harshly, believing they are not doing a good job if they do not get their “clients” to change according to their standards. Because they are too hard on themselves and do not see that each person is responsible for their own life and life decisions and choices, they take on the task that belongs to the individual, thereby alienating them. There is a saying in social work: if a professional is working harder at helping someone than they are working at helping themselves, that professional is overinvolved. Overinvolvement is when a profesOverinvolvement: when a professional sional becomes obsessed with the life becomes obsessed with the life of of another and takes too much interest, another and takes too much interest, crossing boundaries; telling, not listencrossing boundaries; telling, not ing; giving unsolicited advice; and genlistening; giving unsolicited advice; erally undermining another’s right to and generally undermining another’s determination. This often signals self-­ right to self-­determination. that the professional needs to pay more attention to their own life, build their own social support network, and engage in more effective self-­care strategies. Judging one’s “clients” is often one of the first red flags associated with compassion fatigue (see Chapter 7) and should be taken seriously by professionals. Copyright © 2021. Canadian Scholars. All rights reserved. TIME MANAGEMENT AND BOUNDARY ISSUES Some older adults spoke about professionals who seemed to treat them with disrespect, showing up late and calling them by their first names. They felt these professionals did not value them. One woman found the courage to fire her case manager after she was late three times, citing personal problems. Her comment? “The first time I tried to be understanding. Everyone can have personal problems. But when it happened two more times, I felt she was just taking advantage of me and being very disrespectful. That was the end of our relationship as far as I was concerned.” This woman is not wrong to see this behaviour as disrespectful. While the professional may have legitimately been having “personal problems,” the case Spindel, P. (2021). Case management from an empowerment perspective, fourth edition : A guide for health and human services professionals. Canadian Scholars. Created from humber on 2024-01-07 02:55:42. Copyright © 2021. Canadian Scholars. All rights reserved. 50  CASE MANAGEMENT FROM AN EMPOWERMENT PERSPECTIVE manager needed to see that those issues were impacting her practice and preventing her from showing up fully and completely with those with whom she was working. We often ask people to respect our time and ensure they arrive to their appointments; why should they not expect the same respect from us? It also helps to keep in mind the values of those with whom you are working. Older adults are a generation with different values. It is important for those working with them to be observant about what makes them comfortable or uncomfortable. Professionals who have difficulty arriving on time can present other, more lethal challenges for those with whom they work. Even if you personally believe being on time isn’t all that important, arriving late for an appointment, a meeting, or an event signals disrespect for others’ time and can result in sometimes tragic consequences. Some people with mental health challenges feel rejected and abandoned when their workers are late, and when these feelings are twinned with suicidal thoughts, they can precipitate a suicide attempt. Some students in health and human services programs who have difficulty meeting assignment deadlines or arriving for class on time claim they will not behave the same way once they are working. Unfortunately, that is often not the case. Poor work habits learned in school often migrate to the workplace, where they can have severe consequences for the professional’s “clients,” their agency, and themselves. Time management is a critical skill that needs to be learned early in life. Professionalism requires that workers arrive on time for their appointments and that they meet their professional obligations. Those who fail to do so often lose “clients” and sometimes their jobs. In the interviews, some individuals talked about how professionals who checked their refrigerators without permission or wandered around their houses, picking up their personal belongings. Most were quite offended at this kind of behaviour and felt violated by these professionals. It is useful for professionals to put themselves in their “clients’” shoes and decide if they would like someone wandering around their homes, handling their belongings, or checking their refrigerators. Even if you decide you would be comfortable with it yourself, you should keep in mind that the person with whom you are working is a different person. There are often better, less invasive ways of “checking in” on people about whom you’re concerned, many of which will make them feel more comfortable. For example, if a professional has concerns about whether or not an older adult is eating, they should talk with them rather than rifling through their refrigerator. All of this has to do with attunement. Getting to know someone and learning about what motivates them is more important than checking up on them. Spindel, P. (2021). Case management from an empowerment perspective, fourth edition : A guide for health and human services professionals. Canadian Scholars. Created from humber on 2024-01-07 02:55:42. Chapter 3   What Are Case Management Service Users Saying?   51 FAILURE TO LISTEN AND FOCUS ON TECHNIQUES Some individuals described workers consumed with filling out the necessary forms, who seemed to see them not as people but as cases that needed to be “written up.” While they spoke, they could see that their workers were distracted, already thinking about other things, and not really paying attention to them at all. Some said that their workers appeared to be formulating responses to their statements before they had finished speaking. They saw this as disingenuous and felt that these professionals were not sincere in their attempts to help them. They seemed self-­conscious, more concerned about how they were doing or about “appearing professional” than about actually addressing the person’s needs. People described professionals who were clearly using “techniques” in their dealings with them—­forced empathy, statements such as “so you are feeling quite frustrated with your doctor”—­rather than responding to them in real ways that demonstrated they truly cared about them as people and were genuinely interested in their situations. These professionals seemed wooden, voicing previously constructed responses to the statements of the people they were supposed to be supporting. (The use of communication techniques is discussed in more depth in Chapter 8.) Working with others is about truly wanting to know another person. When a “client” recognizes that a professional truly wants to know them and is interested in what they have to say, that in itself will often help to make them feel better. Copyright © 2021. Canadian Scholars. All rights reserved. PROJECTION, ENMESHMENT, AND COUNTERTRANSFERENCE In some cases, professionals may have already decided that the people with whom they are working have made a mess of their lives and set about with enthusiasm to “fix” them. These tend to be professionals who are not entirely in charge of things in their own lives and lack the self-­awareness to see that their attempts to fix their “clients” are merely their own attempts to feel more in control of things. Projecting our own life frustrations, regrets, and inability to control events onto others can be dangerous. It is important, if we want to work with others, to spend some time coming to terms with issues occurring in our own lives. While no professional is perfect by any means, allowing challenges in our own lives to seriously affect our work with people can become a professional misconduct issue that can result in harm to individuals, legal challenges for the professional and agency, or being reported to the professional college governing the field. Spindel, P. (2021). Case management from an empowerment perspective, fourth edition : A guide for health and human services professionals. Canadian Scholars. Created from humber on 2024-01-07 02:55:42. 52  CASE MANAGEMENT FROM AN EMPOWERMENT PERSPECTIVE Some professionals become too enmeshed in their “clients’” lives and begin sharing personal stories about themselves. Some even say, “I know just how you feel, I had the same problem” or “you’re just like me” in a misguided attempt to convey empathy or encouragement. These professionals may be misunderstanding the difference between “being friendly” and “being friends,” or they may be projecting onto the individual or attempting to resolve their own issues. One person said: I wanted to scream in frustration. This professional thought she was doing me a favour by telling me that my life of domestic violence was just like hers had been, and that if she could do it (escape), I could too. I couldn’t believe her ignorance. My life was nothing like hers, but she probably thought she was helping me, when instead I felt like she was just one more person who was not hearing me, didn’t see me, was negatively judging me, and was more absorbed with her own life and problems than she was in listening to and really helping me. Copyright © 2021. Canadian Scholars. All rights reserved. The professional in this instance likely believed she was conveying a positive, hopeful message, but it’s clear the person did not agree. This individual wished to have the uniqueness of her life experience acknowledged and work on solutions that would truly address her needs. She did not need to hear how she was “just like” anyone else. This is important for professionals to keep in mind; every person wants to be seen and understood as an individual, no matter how much they may seem “just like” you or another person you have worked with. Other individuals speak of professionals who lack boundaries, who get too close, wanting to give them their home phone numbers, or have dual relationships outside of work. One person had this to say: It gave me the creeps, really. I don’t know why she took what seemed like too much of an interest in me. She was always giving me advice, getting really personal, wanting to hear all the gory details of my abuse as a child. I didn’t want to get that close to her, and sometimes her intrusiveness made me feel controlled and frightened. This professional was clearly overinvested and violating boundaries of the person with whom she was working. Professionals who engage in such behaviour may Spindel, P. (2021). Case management from an empowerment perspective, fourth edition : A guide for health and human services professionals. Canadian Scholars. Created from humber on 2024-01-07 02:55:42. Chapter 3   What Are Case Management Service Users Saying?   53 be wrestling with unresolved personal issues, where they inadvertently use their “clients” to complete their lives, rather than having their own support systems and healthy relationships with family and friends. Using others for “therapy” is a dangerous practice that is unethical and may backfire. It is a violation of most professional codes of ethics and may result in malpractice complaints. This problem is not confined to health or human services professionals. Sometimes faculty members violate boundaries with students, attempting to become friends rather than maintaining their role as teachers and mentors. When this occurs, it can be a slippery slope towards professional misconduct as well. What’s the difference between “being friendly” and “being friends”? Many people, including service recipients and professionals, can find it difficult to differentiate the two. Being friendly means being approachable, warm, and inviting while respecting and maintaining professional boundaries. It does not mean crossing the line into sharing intimate details of one’s own life, encouraging individuals to overshare, or acting as an emotional support around the clock during personal time. Professionals need to establish clear boundaries and maintain them for their own sake and for the safety and security of those with whom they work. Most professional colleges discourage and even prohibit this kind of behaviour in both professors and health and human services professionals, because it can endanger service recipients and students as well as the professional. All professionals need to be aware of the codes of ethics of their professions, and ensure they are behaving according to these codes (see Chapter 7 for more on ethics). Copyright © 2021. Canadian Scholars. All rights reserved. LABELLING, STEREOTYPING, STIGMATIZATION, AND “PATHOLAGIZATION” Individuals in the mental health system had the common complaint that whenever they expressed strong emotions or asserted themselves, their workers told them they were “becoming ill” and needed their medication adjusted. One person said: I’ll show her what “ill” is if she accuses me of that one more time when I am trying to tell her how frustrated I am with being held back, not allowed to take more control over my own life. I don’t want to have people hounding me to go to work, to take my medication, to structure my life. No one else has to do that. Other people don’t have curfews. Other people don’t have people standing over them, telling them what to do all the time. Mental illness isn’t a sentence. It’s a condition. I should be allowed to have some humanity left. Spindel, P. (2021). Case management from an empowerment perspective, fourth edition : A guide for health and human services professionals. Canadian Scholars. Created from humber on 2024-01-07 02:55:42. Copyright © 2021. Canadian Scholars. All rights reserved. 54  CASE MANAGEMENT FROM AN EMPOWERMENT PERSPECTIVE Considering a natural emotional reaction to be pathological because the professional does not want to have to deal with it or finds it irritating or anxiety-­ producing can do serious harm to another’s sense of themselves and the authenticity of their feelings. George Herbert Mead (1934) and other sociologists first described labelling as part of a social construction of someone. In other words, labels rarely define a person; they create an image of them that is artificially produced. Labelling another person is one of the worst things that any professional can do. It shapes their judgements about the person and can induce negative judgements in the person about themselves. It evokes stereotypes and puts a person in a category that is difficult to escape from (see Chapter 5 for more on labelling). Labelling creates stigma. According to Link and Phelan (2001), stigma has five components, with the other four being stereotyping, separation, status loss, and discrimination within the context of power differential. The Centre for Addiction and Mental Health (CAMH, 2017) defines Stigma: “negative attitudes stigma as “negative attitudes (prejudice) (prejudice) and negative behaviour and negative behaviour (discrimina(discrimination) toward people with tion) toward people with substance use substance use and mental health and mental health problems.” However, problems.” (CAMH, 2017) stigma is not just confined to people with these challenges. It applies to a broad spectrum of people with disabilities, older people, LGBTQ people, and people of different races and cultures. Cardwell (1996) defined a stereotype as “a fixed, over generalized belief about a particular group or class of people” (p. 234). Once someone is stigmatized and stereotyped, they can lose social status and may face considerable discrimination in seeking housing, work, social contact, and so on. The person’s power is quickly reduced, and they are more easily dismissed by others. At the root, labelling and stereotyping are forms of dehumanization that allow others to mistreat someone. They are not something any professional should ever engage in. CONTROL ISSUES AND LACK OF ETHICS The biomedical and social services systems and those who work within them have often been accused of re-creating the abuse and/or neglect that individuals with mental health challenges and those with a range of other disabilities have experienced earlier in their lives. Many of these abuses occurred because early caregivers, then professionals, have felt the need to overexert control. The stories that follow Spindel, P. (2021). Case management from an empowerment perspective, fourth edition : A guide for health and human services professionals. Canadian Scholars. Created from humber on 2024-01-07 02:55:42. Chapter 3   What Are Case Management Service Users Saying?   55 demonstrate how these control issues by individuals working in the system can re-­ traumatize people who have suffered earlier abuse and neglect. CRITICAL THINKING CASE STUDY: MARY Mary is a 14-­year-­old female with serious mental health issues caused by being sexually abused by her stepfather, then being sexually exploited by a boyfriend who got her to prostitute for him. She regularly “acted out” her pain and anger at having been so badly mistreated. Because of her sometimes violent acting out, she was transported to a mental health facility, where four people, three of them male, held her down, lowered her pants, and injected her with thorazine, an anti-­psychotic medication. Her screams as they did this were plaintive. Far from helping her, these professionals were re-creating the abuse by her stepfather, who often held her down and drugged her to be able to sexually abuse her once she was in a helpless state. The cry of many that “we are not cases to be managed” takes on special meaning when people tell their stories. Copyright © 2021. Canadian Scholars. All rights reserved. CRITICAL THINKING CASE STUDY: AN EVENING WITH FRIENDS One 60-­year-­old man with a psychiatric “diagnosis” had gone to dinner at a friend’s house, and as the evening progressed, he became more and more anxious. When the friend asked what was wrong, he said that he had to be home by 8:00 p.m., because the case manager was coming to give him his medication. He was very frightened of what would happen if he was not home by then, and felt, when asked, that he could not even call to ask the case manager to come at a later time. This re-created the abuse of his father, who would beat him if he did not return home at exactly the time his father demanded. This form of “case management” was described by a mental health activist as being reminiscent of the visiting nurses’ model, when people were put to bed whenever the nurse could make it. It was a form of institutional routinization transported to the community. For this older man, the routinization often found Spindel, P. (2021). Case management from an empowerment perspective, fourth edition : A guide for health and human services professionals. Canadian Scholars. Created from humber on 2024-01-07 02:55:42. 56  CASE MANAGEMENT FROM AN EMPOWERMENT PERSPECTIVE in state hospitals followed him to the community, where he had to appear at the designated hour for “medication time” as if he were still in the state institution. This was not the only example of routinization surrounding medication issues for those with psychiatric labels. CRITICAL THINKING CASE STUDY: MEDICATION STRUCTURED DAYS A psychiatrist asked a mental health activist what she thought about people having “medication structured days.” Unsure of what he meant, she asked for clarification. In response to her question, he asked the question: “Shouldn’t there be other programs?” He explained that clients were structuring their days around having to arrive three times a day at a designated place to receive their medication, and this was their program. He went on to suggest this demand is not unlike what is required of children with narcissistic parents, who believe that their children are there for their convenience and that their children’s lives are unimportant. For some patients, this could re-create the abuse of their parents and reinforce beliefs about the relative unimportance of their own lives. He wondered if it wouldn’t be better if people could have more control over their own lives and schedules, instead of needing to plan around designated medication times at particular locations. Copyright © 2021. Canadian Scholars. All rights reserved. LACK OF SUPPORT AND SYSTEMIC BARRIERS Some people speak of workers selling them out to the system, not standing up for them to agencies or governments whose policies negatively affect them. They spoke of a lack of trust, of workers not really being on their side but being in it for themselves. They said that no one really cares about them, that workers are in it for the paycheck, and that these professionals lack courage and conviction in their own lives. Some older citizens confided that they had been treated in dehumanizing ways. “Some nurses in the hospital don’t talk to you—­nothing!” said one older woman. Others said their workers played politics and were overly concerned with credentials and less concerned about skill, competence, and commitment to people. Many individuals see the human services that were established to serve them as just another road block, just another bunch of people who have to be convinced Spindel, P. (2021). Case management from an empowerment perspective, fourth edition : A guide for health and human services professionals. Canadian Scholars. Created from humber on 2024-01-07 02:55:42. Chapter 3   What Are Case Management Service Users Saying?   57 before they can get what they want or need. Sadly, many feel that their workers would sell them out if pressured to do so, and trust is a real issue in many case management relationships. They feel they are being made to fit into narrow agency mandates, rather than being served as individuals. PATERNALISTIC BENEFICENCE A mental health activist described an experience that illustrated how case managers can cause considerable emotional harm by doing what they think is “best” for someone. This story illustrates how hurtful some exchanges between case managers and “clients” can be. Copyright © 2021. Canadian Scholars. All rights reserved. CRITICAL THINKING CASE STUDY: “IT’S YOUR TREAT” A young man who was on very heavy medication because of a psychiatric diagnosis was sleeping 15 to 16 hours a day, then getting himself up to go to a very boring day program day after day. Tired of this routine, he decided to try volunteering so that he could gradually re-­enter the working world. He got a volunteer job delivering records in a hospital for two days a week, then moved to a paid job driving children with developmental disabilities to their programs in a van. He did this job as well as continuing his day treatment program. He described his “case manager” as taking on the role of “almost a therapist.” He said he never heard a word about human rights or empowerment from this man. He never told him he had the right to an advocate. He described the case management relationship as “not even maintenance.” About one year after starting his job as a van driver, he got another job at a clubhouse for people with psychiatric labels. He said he could not actually take on this job until the people at his day treatment program decided that he could go. He said the doctors in the day program “had to open the doors for you to leave.” As he was leaving, he met with his case manager. Thinking the case manager meant to wish him well on his “release” from day treatment, he agreed to go with him to a local restaurant at the case manager’s invitation. They enjoyed a nice dinner, but when the check came, the case manager handed it to him and said, “It’s your treat.” Spindel, P. (2021). Case management from an empowerment perspective, fourth edition : A guide for health and human services professionals. Canadian Scholars. Created from humber on 2024-01-07 02:55:42. 58  CASE MANAGEMENT FROM AN EMPOWERMENT PERSPECTIVE The young man said that the case manager felt no shame or guilt in doing this. This was his way of telling him, you are in the working world now, so you get to pay for dinner. There was seemingly no understanding of this man’s true situation, and he was treated in a rude and insensitive way by his case manager. The hurt this caused lingers to the present day. AGENTS OF SOCIAL CONTROL Perhaps even worse than case managers deciding what is in someone’s “best interests” is when they take things one step further and force them to do what they want them to do on behalf of the state. CRITICAL THINKING CASE STUDY: CONTRACTS AND CURFEWS Copyright © 2021. Canadian Scholars. All rights reserved. A young person with a psychiatric label was self-­medicating. One day, her case manager ordered her to take her medication properly and locked her medications in a strong box. She was told to sign a contract that included a curfew and that she had to be in her apartment at a particular time to get her medication. If she did not comply, she would be committed to hospital. Some case managers take it upon themselves to control a person’s behaviour, believing they are taking preventative steps to avoid any social disruption they might cause. Case managers do not have to live with the consequences of their actions, but their “clients” do. Professionals who fail to consider this very basic point are in danger of living an individual’s life for them according to what the professional thinks is best, irrespective of what the person thinks. Most people are trying to deal with their situations as best they can. They are using coping strategies that work for them, at least to some extent. Taking away these coping strategies, supplanting them with strategies that a case manager thinks work better, robs them of their sense of security and of the ability to act according to their real needs as defined by them, rather than someone else. In this case, the young woman was not taking her medication as directed, but she likely had reasons to self-­medicate. The caseworker, instead of taking drastic actions, Spindel, P. (2021). Case management from an empowerment perspective, fourth edition : A guide for health and human services professionals. Canadian Scholars. Created from humber on 2024-01-07 02:55:42. Chapter 3   What Are Case Management Service Users Saying?   59 would have been much wiser to investigate her reasons for doing this. Had the caseworker done this, they likely would have been able to discover the root cause of this young woman’s “noncompliance” and find a solution that better met her needs. Case managers who use social control strategies with “client” are also quite often on the wrong side of the law. They are certainly on the wrong side of ethical practice guidelines and standards of practice for most professions—­g uidelines that stress individual self-­determination. In the above case, the case manager had no right to force the “client” to sign a contract that included a curfew. The case manager was ethically and legally in the wrong, and because the “client” did not know her rights, she, in practice, did not have any. As one advocate and community organizer put it, “most people don’t know that they have rights—­that’s why they get kicked around the block.” But the truth is that case managers, acting according to ethical and legal principles, should not be subjecting people to these kinds of tactics. ATTEMPTS AT INDOCTRINATION Sometimes, case managers begin to advance their own personal agendas, forgetting that the needs of the people with whom they are working are quite different from their own. Instead of listening carefully and trying to understand another’s situation, some case managers, who think they know what is best, try to influence people in very negative ways. The following case study illustrates the point. Copyright © 2021. Canadian Scholars. All rights reserved. CRITICAL THINKING CASE STUDY: A CASE MANAGER’S AGENDA A young woman who had suffered from severe bouts of depression for years told her case manager, a very religious person, about how she felt so despondent she just wanted to die. This young woman had made several attempts to end her life previously. Instead of responding empathically and discussing the reasons for the woman’s feelings of hopelessness, the case manager pursued her own religious agenda and began talking about the afterlife. She gave the young woman religious literature that discussed being saved and living forever in heaven. A few hours later, the young woman made another very serious attempt on her life. Spindel, P. (2021). Case management from an empowerment perspective, fourth edition : A guide for health and human services professionals. Canadian Scholars. Created from humber on 2024-01-07 02:55:42. 60  CASE MANAGEMENT FROM AN EMPOWERMENT PERSPECTIVE There are no guarantees this young woman would not have attempted suicide anyway in light of the way that she was feeling. What is not in doubt is that the case manager behaved both unethically and illegally in this situation. Her professional and legal responsibilities demanded that she do what she could to prevent a suicide. Had she been practising according to an empowerment model, she would have also felt a responsibility to listen carefully to this woman’s story, to understand what was making her feel so low. Empowerment practice would also have required that she help the young woman to identify how she had survived previous suicidal feelings, so that she could discover her inherent strengths in confronting this kind of situation. Instead, following her own personal agenda, the professional did none of the above, with tragic results that may even have been the direct result of her actions. CASE MANAGERS CONFUSED ABOUT WHAT EMPOWERMENT IS Some case managers think that they are practising empowerment, when in fact they are engaging in punitive, controlling behaviour. Copyright © 2021. Canadian Scholars. All rights reserved. CRITICAL THINKING CASE STUDY: FALSE EMPOWERMENT A young man with a psychiatric history was living in a staffed group home. Worried that he might harm himself, he came into the kitchen and attempted to hand a carving knife to one of the staff. He asked her to take it from him because he was afraid of what he might do. The staff member responded correctly by taking the knife and telling him that they needed to sit and talk about what was happening. Another staff person, who was this individual’s primary worker, approached the other staff person, berating her because she accepted the knife from the client. She informed the other staff member that “we practise empowerment here. What he does with the knife is his responsibility. He needs to learn to take responsibility for his actions.” This case study illustrates how a professional might convince themselves they are practising empowerment, when in reality they are placing the person with Spindel, P. (2021). Case management from an empowerment perspective, fourth edition : A guide for health and human services professionals. Canadian Scholars. Created from humber on 2024-01-07 02:55:42. Chapter 3   What Are Case Management Service Users Saying?   61 whom they are working in considerable jeopardy by not listening to a plea for assistance. It also illustrates how some workers may be unaware of their legal responsibilities to prevent suicide or self-­injury. The first worker responded appropriately, listening to the person’s instructions and acting on them. She also indicated her willingness to listen to his story and the reasons why he felt afraid. Both are bona fide empowerment strategies. Both take direction from the “client.” By ignoring his fear and request for help, the other worker was actually disempowering him, and by imposing her “rule” that he “needed to” take responsibility for his actions, she placed her own need for control above this person’s need (and direct request) for help. Copyright © 2021. Canadian Scholars. All rights reserved. PROFESSIONAL DISEMPOWERMENT A parent activist of a child with a disability said that she had a wonderful case manager who left the field in disgust. She said her case manager “couldn’t not support families,” which was what she was being asked to do by her agency and the government that funded it. This was a worker who practised empowerment by staying on task, following up, and holding other workers accountable to the families with whom she worked. This case manager helped families to apply for individualized funding to meet their specific needs, and she acted in a highly collaborative and ethical way. This was a worker who “did not take no for an answer” when agency or government officials refused to meet families’ needs. At meetings, she was said to “call people on their roles and mandates,” and she “reminded them of ethics.” She was described by agency and government officials as a “devil’s advocate.” By contrast, she was described by the families with whom she worked as dedicated, very informed, and extremely personable. The parent activist commented that this may have been because the worker had a brother with special needs, and so she had considerable sensitivity to the needs of the families with whom she worked. This worker left her chosen profession, driven out by a lack of support from her agency, whose senior administrators were fearful of losing funding if this worker was allowed to challenge government too much. She was also indirectly forced out by the government bureaucracy, which had a reputation for threatening agencies that did not comply with its cost-­cutting agenda. The parent activist said that government’s attempts to pull back funding to families in dire straits “drove [the case manager] crazy,” and she realized that she could not be party to this process and had to leave after “struggling with it personally for a long time.” Spindel, P. (2021). Case management from an empowerment perspective, fourth edition : A guide for health and human services professionals. Canadian Scholars. Created from humber on 2024-01-07 02:55:42. 62  CASE MANAGEMENT FROM AN EMPOWERMENT PERSPECTIVE These are the real tragedies in a system where people who try to function according to a high level of personal ethics and good practice suffer alongside labelled and disadvantaged people. Good case managers will always have times of frustration and anger at a system that oppresses their “clients” and them. But some of these feelings can be offset by case managers working for social change outside of their employment. It is through volunteer social activism that case managers frustrated by their internal agency roles can find some satisfaction. By working with like-­minded people outside of their professional roles, many case managers have found a way to confront a system that attempts to silence them and their “clients.” Copyright © 2021. Canadian Scholars. All rights reserved. FEAR OF NECESSARY CONFRONTATION Some case managers never try to take on the “system” in the first place. A parent activist described a case manager she had as “next to useless,” because she was “too sweet” to be a good case manager. This case manager provided little or no information to this family, and the mother said she had to “stay on top of her all the time.” She said, “Unless families call all the time there is no follow-­up. [Case managers like this] only deal with who is in their face.” In a situation like this, families are confronted with a second layer of bureaucracy in the form of their case managers, who stand in the way of possible activism by not providing information and obfuscating the true situations individuals face. Often, they do this because they fear any attempts to advocate forcefully for the individuals with whom they work will result in repercussions against them and their agencies. This is not a risk they are willing to take, so they continue to practise unethically and inauthentically for years, finding their work unfulfilling and lacking in personal satisfaction and results. They and their agencies are “safe,” but the people with whom they work pay a terrible price. It raises the question of why any individual or agency would want to continue to be in business if they are not really helping the people they are supposed to be serving. Still other case managers, who believe they are practising using an empowerment approach, argue they will only advocate when asked to do so. But, as one parent activist said, “Some people can’t ask because they don’t know what their options are. They need to be presented with options to make reasonable choices. No one can choose when they are not informed.” The mother of a young person with a disability said she felt some case managers did want to be more political but were afraid. “After all, they are funded by the government, and so their hands are tied. No one is an independent advocate, Spindel, P. (2021). Case management from an empowerment perspective, fourth edition : A guide for health and human services professionals. Canadian Scholars. Created from humber on 2024-01-07 02:55:42. Chapter 3   What Are Case Management Service Users Saying?   63 they can only advocate to a certain degree.” In this way, the state controls the degree of political pressure that is likely to come its way. The fear of advocating in a vigorous way is pervasive among case managers. Many, who believe they live in a democracy, are very fearful of advancing the human and democratic rights of the people with whom they work if it means confronting government on its policies. Some would say a state that does not allow this kind of advocacy to occur is not really a democracy, yet this position is seldom voiced in human services circles, and when it is discussed, it creates considerable discomfort. There is a quiet complicity in human services that expresses itself as professionals “knowing how far they can go,” thereby abandoning individuals to difficult circumstances, wishing they could do more but being unwilling to take the chance. Real power still does lie in numbers. If case managers were to band together with the people they serve and seek powerful allies in the political arena, a great deal could be accomplished. But many, lacking the knowledge of how to engage in social activism or systemic advocacy, fail to do so and simply give up. The advocacy chapter in this guide (Chapter 10) may be especially useful in helping case managers who are interested in taking action to challenge systems that exploit and dehumanize their “clients.” Copyright © 2021. Canadian Scholars. All rights reserved. A KNOW-­IT-­ALL ATTITUDE Saleebey (1992) has written extensively about the need for professionals to climb down from the “expert” role and see clients as experts in their own lives, to respect their subjugated knowledge (Hartman, 1994). Hartman (1994) has said, “We must learn to bracket our knowledge, to put it aside so it will not shape our questions and our listening and cause a barrier between us and the people we would understand. Furthermore, we must not privilege our professional knowledge, and we must let ourselves hear information from our clients that would challenge our views” (p. 27). An older woman had this to say about “know-­it-­all” case managers: Some are authoritarian, they are rule-­bound, and overbearing. The truth is that they are cold. They think they know better than you and are always prejudging you. I think they teach them in school to put blinders on. They stress “objectivity” but that is a myth. They are ruled by the system, afraid to use their own judgement—­you know, the CYA (cover your ass) philosophy. Spindel, P. (2021). Case management from an empowerment perspective, fourth edition : A guide for health and human services professionals. Canadian Scholars. Created from humber on 2024-01-07 02:55:42. 64  CASE MANAGEMENT FROM AN EMPOWERMENT PERSPECTIVE They always have to go exactly by the book or someone above them will give them hell. They are often defensive and are good at saying “that’s not part of our mandate.” This woman described case managers who were “arrogant” and sent out a message that they are always right. As someone who had lived for eight decades, she resented being spoken to in a disrespectful way, as if her 30-­year-­old case manager knew everything, and she, having lived 50 years longer, knew nothing about her life. THE POSITIVES: CASE MANAGERS WHO HAVE EARNED THE RESPECT OF PEOPLE WITH WHOM THEY WORK The criticisms of current case management practices that “clients” have identified should not be seen by professionals as a reason to throw up their hands in defeat. Rather, these criticisms can be used to improve practice and transform it into an empowerment approach that is more rewarding for them and the people with whom they are working. In the sections that follow, we’ll look at what individuals consider good case management practices. Copyright © 2021. Canadian Scholars. All rights reserved. True, Caring Helpers Just as in medicine, we often hear of “true healers” who show a deep concern for their patients, but are rare in the profession. In case management practice, individuals have identified the characteristics of those they consider to be “true helpers.” Many of these professionals are seen as people who see their work as a calling rather than a job. They strive for the highest level of ethics rather than barely meeting ethical requirements. These are the professionals who understand themselves and have confronted their own personal dilemmas, and who know how difficult that process can be. They have developed compassion and the ability to help without the need to rescue. While not impressed with most of the care given to her by biomedical professionals, one older woman did have a very good experience with her case manager, who used an empowerment model. She said her case manager helps her to get out of the house so she is not so isolated. She described her as sensitive, saying the case manager sat beside her bed all afternoon after she had an operation