Posted on: August 31st, 2023. By: Kim Zarzour, yorkregion.com, Original Article.
Has the pendulum swung too far?
“We are literally leaving these people to suffer and die on the streets alone. We should be ashamed of ourselves.”
Jackie Kalia is incensed.
As a mother of two adult children with schizophrenia, she is tuned into the problem-riddled mental health care system, but recent reports of a Prince Edward Island mom and her desperate search to help her sick son, still shocked — and enraged — her.
The Richmond Hill parent says she’s been fortunate not to have to deal with homelessness and her kids, but she knows many who have, including members of her group Mothers for Mental Health Care Reform.
She hopes the story shared by Marlene Bryenton of Charlottetown will be the galvanizing force for change.
Bryenton has been struggling for 10 months to get help for her son, who she says suffers from a serious mental illness and has been wandering the streets in Toronto, Simcoe County and York Region. But she is not alone.
Experts say the streets are filled with such sad stories.
So is the group Kalia helped form.
“We are literally leaving these people to suffer and die on the streets alone. We should be ashamed of ourselves.”
Jackie Kalia is incensed.
As a mother of two adult children with schizophrenia, she is tuned into the problem-riddled mental health care system, but recent reports of a Prince Edward Island mom and her desperate search to help her sick son, still shocked — and enraged — her.
The Richmond Hill parent says she’s been fortunate not to have to deal with homelessness and her kids, but she knows many who have, including members of her group Mothers for Mental Health Care Reform.
She hopes the story shared by Marlene Bryenton of Charlottetown will be the galvanizing force for change.
Bryenton has been struggling for 10 months to get help for her son, who she says suffers from a serious mental illness and has been wandering the streets in Toronto, Simcoe County and York Region. But she is not alone.
Experts say the streets are filled with such sad stories.
So is the group Kalia helped form.
These local parents have experienced nightmares of their own — a son kept gas containers near the furnace to ward off hallucinations, another set fire to himself, a son with delusions bought a one-way ticket to Thailand, a daughter covered light fixtures — nearly starting a fire — because she thought she was being watched through the bulbs.
And yet, despite these harrowing experiences, the families still can’t get their children treated because their illnesses have left them without the insight to know they need help.
It’s part of the problem facing those trying to help their loved ones.
Anosognosia (inability to recognize you’re ill) impacts those with serious mental illness.
Bryenton was willing to share her name and her son’s in a desperate attempt to save him, but we chose not publish his images or name.
It’s what prevents many parents from speaking out about the mental health care system: their adult children have a right to privacy.
They also have freedom to choose — or not choose — treatment.
Under Ontario’s Mental Health Act, patients cannot be involuntarily treated unless they’re deemed a threat to themselves or others. Even when a psychiatrist attests to that danger, the ruling can be appealed, delayed and overturned.
Karen Scott Booth is another parent who knows the struggle well. Her son has bipolar disorder. He went missing from 2017 to 2020, in and out of seven different hospitals — each time refusing treatment — until finally, he was arrested for swinging a bike chain and threatening, and sent to jail.
There, a psychiatrist and proper medication brought him to recovery.
“He probably wouldn’t be here today if he hadn’t been arrested,” she says. “I swore that if we survived, I would spend the rest of my life changing the system so people who are ill get medical treatment in a timely manner.”
To try and fix these problems, Scott Booth is part of a team of advocates, including psychiatrists, university professors, lawyers, social workers, police officers and forensic psychologists.
TEAM to Effect Change also includes six family members with their own tragedies, like the father whose daughter, with the help of a lawyer, was released from hospital when she was unwell and shortly thereafter jumped to her death.
While the Mothers to Reform concentrates on sharing podcasts and information to help others navigate the health system, TEAM is calling on MPP Michael Tibollo, the province’s associate minister of mental health and addictions, to bring forward an amendment to the Health Care Consent Act.
Under Ontario law, if a psychiatrist decides a patient should receive involuntary treatment, the patient may appeal, leading to lengthy delays and, often, deterioration.
Facing a shortage of beds, psychiatrists often discharge involuntary patients rather than fight that protracted battle, Scott Booth says.
The TEAM amendment would permit treatment while awaiting the final decision.
Bryenton, too, is working for change.
She is working with MP Sean Casey and former senator Diane Griffin on a private member’s bill, the first of its kind, similar to Advanced Medical Directives for people who are dying.
Patients who are recovered from psychiatric illness would sign the directive, agreeing that, should they get sick again, police may take them to hospital for treatment.
“I think in my son’s case, if he knew everything we had to go through to get him help … he would sign. He wouldn’t want to see us go through that heartache again.”
After multiple appeals to the province for help, Bryenton received an email from Premier Doug Ford saying he is sorry to hear about her “difficult experiences and challenges. With that said, I do appreciate your insight on this matter and take your concerns seriously,” the email said. “I’ve forwarded your email to the Honourable Sylvia Jones, minister of health, for her information.”
Neither Jones, nor Tibollo, responded to YorkRegion.com‘s requests for comment.
Some experts believe it’s not just flaws in the laws to blame, but lack of resources.
Michael Braithwaite, CEO of Blue Door, a York Region charity, has experienced similar struggles with his sister’s mental illness.
“One day, the person is open to getting help and you’re hopeful; the next, they have no idea what you’re talking about and are off the rails again. The toll it takes on families, the judgment and guilt … you just feel helpless.”
Working in shelters, he has seen what happens when people go off their medication.
“There are outbursts and, when you dig deeper, it’s because they’ve run out of medication or stopped taking it … It all starts and ends with a safe place to call home.”
Ontario needs more support for families and supports in affordable housing for those with serious mental illness, he says.
Dr. Richard O’Reilly, consultant psychiatrist and Western University professor, says the situation is worsening.
“If you have a psychotic disorder and lack insight to appreciate you need treatment, you’re quite likely to end up on the streets, abandoned.”
An estimated 30 to 40 per cent in the homeless population has a mental illness, the Mental Health Commission of Canada reports, and new research suggests it could be higher than 50 per cent. And yet, O’Reilly says, Ontario has progressively closed psychiatric beds.
“Twenty years ago, we never had patients lined up in the ER. Now, many hospitals almost continuously have five to 20 patients who have been accepted for a psychiatric in-patient bed but remain in the ER due to unavailability.
When a person with severe mental illness needing treatment presents to an emergency department, staff often feel pressured to avoid admission because of an acute shortage of psychiatric beds, he says.
“We end up discharging them to homeless shelters or directly onto the streets.”
While much of the focus on homelessness is quite rightly on addictions and safe injection sites, he says, many living on the streets require antipsychotic treatment, very high support group homes with round-the-clock nursing staff and restrictions on their freedom, he says.
Curfews to keep them from wandering off and into danger may raise the ire of civil libertarians, he says, but it’s a choice: ensuring their freedom, or keeping them safe.
“My colleague in the U.S. coined the phrase ‘rotting with their rights on’ … It’s almost identical to issues around long-term-care homes. We need a similar type of residential institution for some of the most severely impaired.”
The pendulum has swung too far for rights and privacy of the patient — to the patient’s detriment, says Marvin Ross, a Dundas writer/publisher and advocate for those with serious mental illness.
“Yes, he has a right to decide if he wants treatment or hospitalization, but that only works if you’re of right mind.
“We don’t do that if granny has Alzheimer’s and she wanders off and no one can find her. Everybody’s out there looking for her before she dies of exposure. But with the mentally ill, they don’t really care.”