Susan Inman

The catastrophic situation of so many homeless people in Vancouver and other cities and towns in BC and across Canada is receiving a lot of media coverage. As the parent of a daughter with a severe mental illness, I see these encampments as a dire possibility once she no longer has family supporting her on a daily basis. To help avoid this fate, it’s crucial that people like her have access to the involuntary treatment that is currently supposed to be, but too often isn’t available when needed. When people with schizophrenia or bipolar disorder are in the psychotic part of their disorder, they often have anosognosia, which is a brain-based inability to realize they are ill. This is why they often refuse treatment.

Through the 23 years that my daughter has lived with schizophrenia, I’ve been immersed in the community of families living with these unexpected brain disorders. I‘ve come to know many caring, diligent parents who weren’t as lucky as we’ve been and whose sons and daughters have, at various times, been part of those who remain untreated. Even with BC’s Mental Health Act that should have ensured treatment, they didn’t receive it. They joined those who become homeless, victimized, addicted, and incarcerated.

These were people who had housing. They had families who had either bought or rented homes for them or had their family member living with them; once their family member stopped taking necessary antipsychotic medications, the chaotic psychosis was in charge of decisions.

Families like us across Canada have been failed by inadequate mental health systems that have made these tragic outcomes more likely. Part of the problem arises from the fact that the delivery of mental health services is informed by two not really compatible belief systems.

One belief system, which has gained increasing power in the last twenty years, sees all mental health problems as formed by a variety of socially determined factors. These include poverty, racism, sexism, and poor parenting. This alternative belief system, in seeking to address these problems and ensure people’s human rights, underlies fights across the country against access to involuntary treatment. However, this movement never acknowledges the evidence base informing the other belief system; contemporary psychiatric practice sees psychotic illnesses like schizophrenia as brain disorders and uses the research demonstrating that people who remain on antipsychotic medications do much better.

The alternative beliefs informed, for example, the 2021 report from Jennifer Charlesworth, BC’s Representative for Children and Youth, that clearly opposed the use of involuntary treatment. This report carefully avoided including the experiences of people like my daughter, whose involuntary access to BC Children’s Hospital meant that we finally had a way of understanding what was happening to her and how we could provide the best help.

There are already many obstacles to people getting appropriate treatment. These include the lack of public mental illness literacy campaigns that could help families and friends understand psychotic disorders and how to obtain appropriate services.

Another obstacle is the fact that adequate psycho-education for this population has basically disappeared from most mental health systems. This education is available in the now increasing numbers of Early Psychosis Intervention programs in BC, but most people don’t have access to them.

While not receiving adequate education about their illnesses, mental health clients do have increasing exposure within the mental health system itself to antipsychiatry and anti-medication beliefs. This is mostly coming from the rapidly expanding number of peer delivered services. Peers, who have some kind of mental health problem, can provide valuable services for people whose illnesses interfere with managing the tasks of daily living. However, peer leadership ensured that the Mental Health Commission of Canada guidelines and the BC guidelines for training peers don’t include education about illnesses like schizophrenia. At the same time, they promote the idea that people must always choose if they want any treatment.

A much-needed improvement would be to train all service providers to cooperate with family caregivers. For other disorders where people rely on families to manage daily life, the health care system is eager to cooperate in order to make the best medical and psychosocial recommendations. This kind of cooperation is too rare for families helping someone with a severe mental illness. The only reason that my daughter, who has struggled with the cognitive challenges that are common in schizophrenia, has done well is because we mostly have had access to this cooperation.

The biggest looming threat to people like my daughter is the current Charter Challenge to BC’s Mental Health Act from the Council of Canadians with Disabilities (CCD). If this Charter Challenge is successful, access to treatment in the too few inpatient psychiatric beds would become almost impossible for patients. People who are considered a danger to themselves or others could be admitted to a hospital, but they would have to agree to receive any medically based treatment. Proponents for the CCD’s proposed changes point to Ontario where the alternative movement has been successful in bringing in legislation blocking access to involuntary medically based treatment in hospitals. People can still be committed if they are a danger to themselves or others, but they must agree to treatment. People who pose the most severe dangers and refuse treatment can remain hospitalized blocking access to beds for other patients.

Families like mine and front line psychiatrists in Ontario report on the damage this legislation is causing. They describe the increasing number of severely mentally ill people who are no longer being treated. Even the public is seeing the impact as the growing number of random acts of violence from strangers has escalated.

The US has been dominated for even longer by the beliefs of lawyers and disability rights groups who have persuasively argued that involuntary treatment violates human rights. The consequences of their efforts have been disastrous. As the US based Treatment Advocacy Center reports, there are now ten times as many people with mental illness being incarcerated as those using the small number of inpatient psychiatric beds that remain.

Now, however, the US is confronting the misguided beliefs that have left so many people with severe, untreated mental illnesses homeless or cycling in and out of the criminal justice system. In New York and California, governors and mayors are promoting legislation that provides for involuntary hospitalization to stabilize these people and follow up with supported housing. In aiding these efforts, influential newspapers like the Sacramento Bee now headline editorials with statements like “Disability rights advocates are dead wrong for opposing Gov. Newsom’s Care Court.” The paper’s Editorial Board argues that “it’s nonsensical to leave people held hostage to their delusions in the name of protecting their highly theoretical freedoms.” They write that they don’t want to pretend that “letting people die from our failure to intervene is compassionate.”

My community is watching these fights over social policy closely. I know that reducing my daughter’s chances of lapsing into untreated psychosis and ending up in a homeless encampment depends on legislators and policy makers protecting a population they haven’t adequately recognized.

Susan Inman lives in Ontario and the best selling author of After Her Brain Broke published by Bridgeross.