Mental illness affects 1.2 million of our children and youth, and by age 25 that number rises to 7.5 million, or about 1 in 5 Canadians. Please take that statistic in — 1 in 5 Canadians struggle with mental illness.
However, this is more than just a statistic, these are the next generation; our sons and daughters, brothers, sisters, nieces, nephews, cousins, grandchildren and beloved friends. Without effective and timely interventions, those struggling are vulnerable to substance use, unemployment, hospitalization, homelessness, incarceration and suicide, which is now the second leading cause of death for young adults in Canada.
Recently in the Ontario Legislature the Minister of Health, Sylvia Jones, said our government provides “top of the line, clinical care.” Our group, Mothers for Mental Healthcare Reform, know that this is not true. The fact is that only 20% of those who are struggling with their mental health receive the appropriate treatment. This is not nearly good enough.
Who we are
We are mothers with adult children living with mental illness. We met at a caregivers group at Home on the Hill Supportive Housing, in Richmond Hill which helped connect those of us facing the frustrating task of advocating for and finding help for our adult children.
In 2021, out of a need to connect with other mothers of adult children suffering from a Serious Mental Illness (SMI) such as psychosis and schizophrenia, our group was formed. We were all experiencing common issues with the mental health care system in Ontario that we wanted to articulate and have addressed. The main problems were, and still are, getting our very ill children the appropriate treatment and then keeping them on the prescribed treatment program which is complicated by the dearth of follow-up services.
When considering serious mental health, numerous additional issues complicate the normally expected treatment patterns of physical illnesses. In particular, legal issues arising from the Mental Health Act and associated legislation including the Privacy Act, appear, at times, to conspire against recovery.
Our members are women with lived experience from many different backgrounds. Our advocacy efforts include letters to legislators and trying to meet with our local MPPs. We have educated ourselves on the system, on illnesses such as schizophrenia and the difficulty of getting someone help who struggles with anosognosia (when a person is unaware of their own physical or mental limitations, even when these limitations are obvious to others).
We have hosted podcasts and guest speakers and were fortunate to have Chris Glover, MPP present a petition to the Ontario legislature on our behalf referencing a survey of 50 families’ lived experiences. The survey is currently being updated to include questions regarding Community Treatment Orders (CTOs). We recently submitted a pre-budget paper to the subcommittee of Ontario asking for parity with other jurisdictions, and submitted our recommendations based on first-hand experience to the committee charged with conducting the five-year review of the Community Treatment Order program in Ontario. A summary of some of our work can be reviewed here.
We recognize that Serious Mental Illness (SMI) is poorly understood by the public; we have also been disappointed to experience a lack of knowledge by some who work in the mental health care system. We believe all citizens deserve the best practices for assessment, treatment and rehabilitation with families included in all stages of care. It is our goal to educate those working in the system and advocate for our children so that they can get access to treatment with dignity.
To better understand the issues we face, three of our members have agreed to share their lived experiences while remaining anonymous. Here are stories from mothers with unique perspectives:
When Love Meets Struggle
When not medicated, my son experiences severe paranoia and loses opportunities for help due to his fears. He lives independently and manages day-to-day tasks, but problems arise when his medication wears off. We hope for better treatments, but research is slow. The Ontario Government needs to increase funding for research, education, and support for Serious Mental Illness to match the level provided for other conditions.
Our 41-year-old son, despite advanced degrees, developed schizophrenia, leading to six involuntary hospitalizations due to persecutory delusions. Medication was effective initially, but his anosognosia, a common lack of awareness of illness experienced by more than half of those diagnosed with schizophrenia, causes medication refusal. This is a constant struggle, as mental health legislation inadequately addresses anosognosia’s impact on treatment adherence.
A pattern emerged: hospital crisis, discharge on a Community Treatment Order (CTO) with an Assertive Community Treatment (ACT) team, then legal challenges to medication by our son, who lacks insight into his illness. Winning these challenges allows him to refuse medication, leading to relapse. The CTO, meant to ensure medication adherence, is undermined by the system’s failure to account for anosognosia.
As parents, we question how someone unaware of their illness can foresee the consequences of refusing medication. The system even permits our son to overrule us as Substitute Decision-Makers (SDM) by appointing a Power of Attorney for Personal Care (POA) who denies medication. Twice our son has appointed a POA who will agree to refuse medication on his behalf which has resulted in severe deterioration and crisis intervention.
We believe mental health legislation unintentionally harms those with serious mental illness due to interpretations around the “capacity” of the individual to comprehend medication compliance decisions. Unmedicated, our son experiences paranoia, impacting his sleep, finances, and relationships. He has lost good jobs, friends and some in our small family no longer communicate with us out of fear for their own safety. He currently lives independently but deteriorates when he stops medication and loses trust in his care team.
We hope for a breakthrough that will uncover medications with fewer side effects, but research is underfunded. The Ontario government must increase funding for research, public education, and support for Serious Mental Illness commensurate with the way other illnesses are funded. The Government of Ontario must also become accountable for the spending of Federal transfer payments intended for Serious Mental Illness.
Speaking the Unspoken
My son is now 37 years old. He did well in school, earning a degree in business and becoming a CPA. He was active socially and volunteered on a nonprofit board, participated in sports, and had a serious relationship. There were no signs of mental illness during his childhood.
At 29, my son began to change after a serious car accident. Although he recovered with physiotherapy and travelled with friends to Thailand and Cambodia, he returned home very sick from a parasite and had to take a break from work. Suddenly, he had to go on short-term disability due to chronic pain. His changes in lifestyle included new eating habits, a different style of dress, and new friends, along with attending retreats for days. He left home one night to volunteer on an island and study yoga without informing us. While there he lost 40 lbs. It took four months to persuade him to return home.
Upon his return, we attempted to get him to see a doctor, but he stopped eating and drinking, refusing to leave his room. One day he ran into traffic and stood there praying. A friend who saw him took him home, suspecting our son was experiencing psychosis, possibly schizophrenia. This marked the beginning of a long, difficult journey.
He was hospitalized seven times, mostly involuntarily. While he responded to medication, he often stopped taking it due to anosognosia, leading to psychotic behaviour. Our concerns about his medication noncompliance often went unheard. Despite having treatment teams, he was able to manipulate the system, convincing caregivers he was compliant. Privacy laws prevented our involvement, though families are crucial experts. This needs to change.
Eventually, he began to gain insight into his illness and became compliant with his medication. He now lives with us at home, drives, and manages daily chores but still faces some cognitive issues and ongoing symptoms. He is independent, volunteers, participates in programs, and shares his story with others. We hope he will be able to return to work and independent living.
My son needed step-down services, more community support, and a residential treatment center like Eli’s Place, which could have prevented years of struggle. Families with loved ones facing serious mental illness are demanding changes to the mental health act to ensure their voices are heard.
Living the Unknown
Returning to work as an RN after my first child’s birth, I was often assigned to the long-term/rehab unit. Caring for vulnerable, often nonverbal and fully dependent elderly patients brought a profound realization: each had once been a beloved baby, just as my son was to me.
This connection guided my 30-year nursing career and my teaching of healthcare students.
Twenty-five years later, my precious child developed schizophrenia, a devastating illness marked by anosognosia, leading to substance use and homelessness. Through my family’s journey with this chronic, debilitating condition, I’ve connected with many families. The individuals our government often seems to treat as disposable could be anyone’s child.
I couldn’t find the help my son needed. Now homeless, his whereabouts are unknown. He was bright with a good future ahead of him. His schizophrenia led him to stop taking medication and to use street drugs to find relief.
I desperately wish I knew where my son is today. I miss my son.
Learn About Our Mission
For more information about Mothers for Mental Health Care Reform and how to join us, please visit ReformMentalHealth.ca. As our mission statement asserts: All citizens deserve the best practices for assessment, treatment & rehabilitation, with families included in all stages of care.
Joni Dulberg | Friend of Eli's Place
Joni is a Family Navigator and Program Developer for Home on the Hill Supportive Housing. She has over 40 years experience in group facilitation, navigation, family life education, and advocacy. A committee member of Mothers for Mental Health Reform, Joni is also a committee member of Ontario Family Caregivers Association, a community representative on a number of committees at CAMH and the Canadian representative for the CURESZ Foundation and Team Daniel. She is the recipient of the Queen’s Platinum Jubilee Award for her community work.
