Susan’s articles about mental illness policies have been published by numerous publications including Huffington Post Canada. Susan Inman’s daughter has lived with schizophrenia for over 20 years. Susan is a retired public school teacher and volunteers for many advocacy projects. She and her family are joint US-Canadian citizens.
Mothers, like me, who provide caregiving for adult children with schizophrenia do not have much of a voice. An unusual opportunity to learn more about the situations of these women arose in 2015 when the European Federation of Families of People with Mental Illness (EUFAMI) conducted a large survey of family caregivers in 22 countries including Canada where I live. The survey found that the typical family caregiver is a woman around 60 years of age who believes she will be caring for her adult child for the rest of her life; she also believes that she is dealing with a larger mental health system which does not meet either the needs of her family member or her own needs.
My personal coping strategy has been to try to identify and write about the larger systemic problems that hinder the development of an effective mental health system for people with severe mental illnesses. The problems I’m focusing on here can be discussed separately, but there is tremendous overlap between them.
Five problems I’ve seen:
1. Lack of adequate public mental illness literacy campaigns
Unfortunately, both my undergraduate and graduate school education proved to be a barrier to understanding what was happening to our daughter when she began to flounder as a teenager; this ignorance led us to seek help from a high profile therapist. In this article, I pointed out the damage that can occur when families reach out to credentialed clinicians who have inadequate science-based training about psychotic disorders. I hear numerous stories from other parents who, because they lacked basic information, made the same kind of mistake that we made.
Neither Canada nor the US has a national mental illness literacy campaign. The public isn’t learning about early warning signs of illnesses like schizophrenia, the steps to take when they see these signs, or the kinds of treatments that are evidence-based. This ignorance also contributes to stigma, since people can easily assume that the disturbing behavior they have witnessed from someone in psychosis is freely chosen.
Instead of large, publicly funded campaigns that ensure people have adequate information about psychotic disorders, we see a growing emphasis on fighting stigma. Unfortunately, too often the anti-stigma rhetoric contains messages that are not in the best interests of people with schizophrenia. For instance, in the current charter challenge to BC’s Mental Health Act, the Council of Canadians with Disabilities (CCD) are the plaintiffs. In seeking to eliminate involuntary treatment, they argue that the current Mental Health Act is unjust because “This law equates having mental health problems with being mentally incompetent to make decisions.” The CCD never seeks to educate people about or even acknowledges that people in the midst of psychotic episodes are not able to make rational decisions; their well-being is jeopardized if this is not understood. In the name of fighting stigma, some groups claiming to represent people with severe mental illnesses deny core features of psychotic disorders.
Too often anti-stigma campaigns either avoid mentioning or minimize the more debilitating symptoms of schizophrenia. In this article about stigma and inclusion, for instance, a leading anti-stigma researcher maintains that structural stigma prevents people with a mental illness from getting jobs. There is a very high rate of unemployment among people with schizophrenia. However, there is no attempt to educate the public about the often severe cognitive losses that are a well-researched part of schizophrenia. These losses include difficulty with working and short term memory, concentration, problem solving, judgment, and social skills. These kinds of difficulties can create enormous barriers to getting and keeping most jobs.
It is hard to address key problems like cognitive losses if they are not acknowledged. The most helpful approach to these problems would be to educate the public, service providers, educators and policy makers about them and to promote the implementation of the evidence-based cognitive remediation programs that have proliferated in the past twenty years. Unlike Canada, many other countries have begun to include cognitive remediation as a core component of psychosocial rehabilitations programs. Meanwhile, family run organizations, like the British Columbia Schizophrenia Society, try to figure out how they could help support the implementation of these much-needed programs.
While we do not have adequate public mental illness literacy campaigns, we do have high profile and very public communication promoting the notion that all mental health problems arise from adverse social factors. The president of the American Psychiatric Association recently published this kind of article in Newsweek. It fails to give the public any idea that, for example, genetic research continues to make progress in searching for causes of schizophrenia. Supporting the idea that illnesses like schizophrenia can be prevented by changing social environments energizes the re-emergence of the rampant mother blaming of earlier decades that never disappeared. I rarely meet a mother who has not been blamed by some service provider for her child’s schizophrenia. This blame hurts patients as well as family caregivers who are adjusting to life altering circumstances that they never expected. Since many people with severe mental illnesses rely on their parents it’s not helpful when these parents, who often supply key supports, are pathologized and discounted.
2. Lack of psycho-education for clients
At family support groups, it is clear that a central problem is that too many people do not stay on anti-psychotic medications that they need. Families dealing with mental illnesses in British Columbia have access to two closely related programs, the US National Alliance on Mental Illness’s Family to Family course and the Canadian developed Strengthening Families Together. These programs provide a solid understanding of the symptoms of serious mental illnesses and the medical and psychosocial treatments that can lead to the best results. However, families complain that their family members lack this kind of basic information. Most clients, unless they are in one of the too few Early Psychosis Intervention programs (EPI), do not even learn about the common cognitive losses that may be making their daily lives much more difficult to manage nor do they learn about simple adaptation strategies.
It is also only through EPI that clients in British Columbia have a chance to participate in professionally facilitated psycho-education programs. My daughter and her friends with schizophrenia received this kind of sustained, weekly education in the now long defunct University of British Columbia Schizophrenia Day Program. Although their illnesses have presented typical challenges, this group was educated about their illnesses, learned to accept them and developed important skills to help manage them. This group takes medications that they understand they need.
The current model for psycho-education in Vancouver, where I live, rests on the idea that each encounter with the mental health system is an opportunity for clients to become educated about their illnesses. The reality is that our underfunded mental health system has seen caseloads increase for service providers and there is very little education supplied.
The lack of appropriate psycho-education for clients, like the lack of public mental illness literacy campaigns, is also the result of competing belief systems. Within too many mental health systems, it has become contentious to consider schizophrenia to be a medical condition or to even agree that it exists. When psychiatrist Dr. Elinor McCance-Katz worked as an advisor to the influential US Substance Abuse and Mental Health Services Administration (SAMHSA), she quit and wrote an expose about this federal organization leading mental health care in the US. She noted there was “perceptible hostility” towards the use of psychiatric medications and, instead, support for the idea that psychosis is just a “’different way of thinking.’” When Dr. McCance-Katz went on to briefly lead SAMHSA, it finally incorporated medically based perspectives. These are disappearing now that SAMHSA is led by a psychologist who has long opposed access to involuntary treatment.
3. Increased exposure to anti-psychiatry/anti-medication beliefs
While not receiving the kind of education about their illnesses that is needed, people with schizophrenia are increasingly exposed to the beliefs of the alternative/psychiatric survivor movement. This exposure is not just through Google searches, but through the expanding presence and influence of people with similar perspectives within the mental health system. Often this exposure comes through the peer movement.
I believe in the usefulness of peer support workers both for clients who need a vast range of supports, but also for the workers who have a great chance to rebuild their resumes. However, we need to acknowledge the serious problems with the powerful international peer movement. Their views certainly dominated the choices that the Mental Health Commission of Canada (MHCC) made in creating its guidelines for educating and supervising peer workers. There is no requirement or even a recommendation for these workers to learn anything about the actual mental illnesses that many of their clients have.
The consequences of lack of appropriate education and guidance have been very evident in Vancouver’s mental health services. For instance, although the heavily promoted peer led Hearing Voices Network (HVN) does offer important support and some coping strategies, it also includes larger messages that undermine the belief in the value of medical approaches to severe mental illnesses. This is a link to the study group in Vancouver connected to HVN; too often, this group focuses on leaders in the anti-psychiatry movement. In this instance, the group was exploring the beliefs of Will Hall, a frequent writer for Mad in America. He is especially known for his book encouraging people to “safely” get off their anti-psychotic medications.
British Columbia recently released new guidelines for the training of peer support workers. Unfortunately, these guidelines don’t require, recommend, or even suggest that the training provide any information about severe mental illnesses. Health authorities are advertising many new positions for these workers. My daughter appreciated assistance she has received from peer workers, but she has let us know about troubling interactions. At one point, the peer leading a Wellness Recovery Action Plan (WRAP) program explained to the group she was leading that they were all there because they had “parents who were never there for them.” My daughter is aware of the problems with messages like this and was aware of them when she described some in the group as noticeably ill; creating greater distrust of families among this population is not in their best interest. These potentially harmful ideas are understandable when peers are not trained about severe mental illnesses, but are just trained about the value of sharing their stories and views.
4. Growing influence of disability rights organizations
Disability rights organizations and their allies in academia have made important gains for people with particular disabilities. At the same time, psychiatric survivors have succeeded in supplying the voice of people with severe mental illnesses within these organizations. These are people who usually have had very negative experiences with psychiatry and with medications that they did not need for their mental health problems. As they have been taught, they generalize from their own experiences.
Disability rights organizations would better serve the needs of people they are assumed to represent if they explained the incapacity that is frequently part of psychosis. I have not yet seen any disability rights organization acknowledge the existence of anosognosia, the brain based inability of many people in psychosis to understand that they are ill. They also do not acknowledge what happens to psychotic people when the legal barriers to access treatment are too onerous. Without appropriate treatment people are left trapped in psychosis. We need disability rights groups and public mental illness literacy campaigns to help the public understand how people with severe untreated psychotic disorders end up homeless, victimized, addicted, and incarcerated.
There is value in the motto of the disability rights movement which is “Nothing about us without us.” At the same time, people like my daughter who live with significant cognitive losses and other residual symptoms of severe mental illnesses often rely on family caregivers. This population is not actually represented if their family caregivers are not also represented in both policymaking situations and in the circle of care communicating about services for their family member.
My family is fortunate that for a very long time we have had access to clinicians who include us. These cooperative relationships have allowed my daughter, whose illness is severe, to have experienced years of stability. However, by constantly attending a wide range of family support groups, I have learned how rare this cooperation is.
Families have tried to get more programs training service providers, including those in psychiatry, to include curriculum on working cooperatively with family caregivers. Although there is little evidence of the success of these efforts, psychiatrists training at the University of Toronto, are now required to take a course on “Centering Madness.” The Mental Health Commission of Canada has chosen to celebrate “Centering Madness” as a champion in the fight against structural stigma in the health care system. The creators of the course describe it as building on the field of “Mad Studies.” “Mad Studies,” developed by the late Bonnie Burstow, has had an enormous impact on disability studies; Burstow fought to abolish the field of psychiatry.
Disability rights organizations have had a lot of success in their efforts to abolish access to involuntary psychiatric treatment. Access to involuntary treatment has become almost impossible in Ontario. Families in Ontario increasingly try to publicize the disastrous consequences for their ill family members who, because of the over involvement of lawyers, are not getting access to necessary treatment. Some psychiatrists are also speaking out; Ontario psychiatrist Dr. David Dawson has written about the overwhelming legal obstacles psychiatrists face in trying to provide treatment to patients with untreated psychosis. He explains how psychiatrists do not have time to go through the daunting and often insurmountable legal procedures involved in trying to get inpatient treatment for patients who need it.
5. The Downside of the Recovery Model
Some core ideas in the now widespread recovery model in delivering mental health services are very appealing. The beliefs that mental health systems should foster hope, treat patients with greater respect, and help people be all they can be are admirable. In my experience, good clinicians already were guided by these basic values in their practice.
While the recovery model is still being celebrated as a breakthrough in the delivery of mental health services, there seems to be no interest in tracking the downside of its assumptions. I first noticed these downsides when Vancouver Coastal Health adopted this model and its contracted agencies, like Gastown Vocational Services (GVS), had to change their policies. My daughter was receiving valuable assistance through their supported volunteer work program. Once the recovery model was adopted, access to this service stopped. The new policy dictated that once people turned 30, they should be streamed into supported employment programs which could lead them to competitive employment. Recognition that some people’s illnesses make competitive employment impossible disappeared.
The recovery model, which did not originate from the medical community, minimizes the severity of some mental illnesses. The guiding philosophy is that if people are supplied the right services, they can ‘recover’ if they choose to do so. This belief system provides a dangerous lens through which to view the vast numbers of homeless people throughout the US and Canada who are struggling with severe, untreated mental illnesses.
Increasingly, more parts of the mental health system are operating from the belief that people are always capable of choice and are, therefore, responsible for bad choices. Families in support groups describe how their family members’ mental health service providers seem willing to simply give up on keeping someone who needs but doesn’t want to stay in treatment; this is done under the belief that they are respecting the person’s choice. Families also report that, even in inpatient settings, their family member’s difficult behavior is being seen as willfully chosen. In locations where people are allowed to refuse medically based treatments, families fear that it has just become more convenient for hospitals to discharge untreated people who are difficult to manage or, even worse, they are turning them over to the criminal justice system.
The recovery model downplays the vital role of medical treatment in mental illness in favor of services from others. Meanwhile, families are concerned about the enormous difficulty in accessing psychiatric care; even though journalists document the shortage of psychiatrists, there seems to be little political will to fix the problem. Similarly, there is a shortage of psychiatric beds. In British Columbia, the BC Psychiatric Association partnered with the BC Schizophrenia Society to describe the problem.
What Can Be Done to Address These Problems?
Improve mental illness literacy campaigns.
Offering basic factual information about disorders like schizophrenia can help people search for appropriate treatment much earlier. It can also help the public respond with more skill and compassion when people around them develop these illnesses.
Provide professionally facilitated psycho-education for clients.
This education provides a foundation for people to make the best possible adjustment to living with a severe mental illness.
Eliminate the dissemination of anti-psychiatry messages in the delivery of publicly funded mental health services.
Lots of people believe in a variety of alternative health care philosophies, like, for instance, the idea that vaccines don’t work. The public healthcare system doesn’t appease these people by publicizing these beliefs or subsidizing the alternative practices they prefer.
Improve the training of all credentialed mental health clinicians.
All clinicians need to have science-based education about illnesses like schizophrenia. As well, they need training in working cooperatively with family caregivers.
Support the laws that protect people with severe mental illnesses and work to reform legislation that leaves too many people left in untreated psychosis.
Vigorous lobbying by psychiatric survivor groups and their allies within the disability rights movement and the legal profession worked to create laws blocking access to involuntary treatment. Concerted efforts are needed to publicize the catastrophic impact of leaving people in untreated psychosis.
Putting My Experiences into Perspective
As we try to plan for the future for our very disabled daughter, I need to understand the larger social trends that impact that future and how we might have a positive impact on the problems these trends are creating. The EUFAMI international survey of family caregivers for people with mental illnesses found that parents fear for the future of their adult children when they are no longer able to supply the enormous amount of help that is needed.
I share these fears.
This article first appeared on medium.com
Susan Inman