WHO WILL HELP JOSH?
Josh Potma, 9, with his parents Kevin and Sue Potma of Mission, suffers from multiple mental health issues for which services in B.C. are inadequate.
A Mission family with a mentally ill nine-year-old boy is desperately worried about his future, saying there aren’t enough medical or community services to ensure he has a safe, healthy and fulfilling life.
“Would we not avoid self medicating and future issues of homelessness and joblessness, plus families being broken and children thrown into foster care, if we took child and teen mental illness more seriously?” Sue Potma asked in a recent interview.
Her son Josh suffers from several disorders that relentlessly affect his behaviour, leading to suspensions from school, physical confrontations with other children, and his removal from sports teams and summer camps.
Josh’s diagnoses include severe attention deficit hyperactivity disorder (inability to focus), Tourette syndrome (making involuntary movements and sounds), generalized anxiety disorder (excessive worry about minor matters), and bipolar disorder (mood swings from extremely low to extremely high).
While bouncing on a chair, Josh spoke about his love for video games and hiking, and his efforts to be better behaved at school.
“I try to be my best, but I just can’t control it, and I just let all my anger out and kick and yell and swear and do all the bad stuff,” he said. “Everybody might think I’m some weird guy, but I’m not. I can’t control my stuff.”
Josh is a “fun-loving, kind, friendly, energetic little boy,” Sue Potma said, but his unpredictable behaviour is also exhausting.
His parents found a psychiatrist for him, the government provides half-hour counselling once a week and he has an educational assistant at school — services that allow Josh to survive, but not thrive. The Potmas have been unable to find support that would significantly increase their quality of life, such as local long-term teams or groups that Josh could join or local support groups for parents with children with severe behavioural challenges.
“There are no services available and it is disheartening,” Potma said. “I know with this mental illness there is the question of: Is there going to be a kid or a teen eventually who wants to end his life? He is talking a lot about suicide or he’s self-harming. And what is there available for him? There’s not enough.”
In October, B.C.’s representative for children and youth released a scathing report that detailed the failings of the youth mental health system for a North Vancouver teen who, after years of struggling with profound mental illness, ended his life outside B.C. Children’s Hospital in 2015.
“This is a growing issue. More and more kids suffer from mental illness earlier,” Bernard Richard said when he released his report, Missing Pieces. “The system needs an overhaul. It’s time to get on with it.”
An estimated 13 per cent of B.C. children ages four to 17 — about 84,000 kids — will experience a significant mental disorder and more than two-thirds of them will not receive proper treatment, says a study by Dr. Charlotte Waddell, a child psychiatrist and Simon Fraser University professor.
“As many as 58,000 children and youth in B.C. may not be receiving the specialized mental health services they need,” Waddell wrote in her 2014 study, which estimated local patient numbers based on data from other high-income countries. In an interview with Postmedia, she said the B.C. estimates are still accurate today.
“These (treatment) shortfalls would not be tolerated for physical health problems in young people, such as cancer or diabetes, and should no longer be tolerated for mental health problems,” said Waddell.
When the NDP formed government in July, it created a new ministry for mental health and addictions. Minister Judy Darcy said it is her ministry’s priority to respond to the only recommendation in Richard’s report, which calls for government to create a comprehensive system of mental health services for youth over the next year, and to implement it the following year.
“We will meet those deadlines,” Darcy said in a recent interview.
“There are a lot of families out there who are struggling to find the appropriate place and the appropriate treatment for a child with complex conditions . ... We do know an awful lot of these kids fall through the cracks.”
Darcy’s fledgling ministry has focused mainly on mental health issues that afflict older teens and adults. For example, the government will reopen Riverview Hospital as a 105-bed, mental-health and addiction-wellness centre and significantly boost funding to battle the deadly fentanyl overdose epidemic.
Darcy promised to work alongside the education and children’s ministries to improve the youth mental health system, but did not share any specific details.
“We need to start early with our kids. We need to support them when they have mild or moderate mental health issues, before they become severe issues and before they develop into substance use,” said Darcy. “It is a huge priority for us.”
When Postmedia reported last month on the plight of Kyle Lloyd, a 29-year-old mentally ill quadriplegic with a drug addiction who is languishing in a psychiatric ward because there is nowhere else for him to go, Darcy said the mental health system must start responding to the needs of individual people, rather than trying to fit them into pre-existing boxes.
Sue Potma believes that what her son needs just doesn’t exist in the current system, and that scares her.
“It makes perfect sense to me why kids like Josh become complex teens and adults like Kyle,” she said.
The NDP has committed to more resources for youth mental health. Its mini-budget in September provided an additional $15 million to child and youth mental health services overseen by the Ministry of Children and Family Development (MCFD), increasing the annual funding for those services to $96 million. The money will be used, in part, to hire 120 more youth mental health workers and expand three existing programs that support children and their families.
But tripling the youth mental health budget is the only way to ensure help for the estimated 70 per cent of mentally ill children who go untreated, argues Waddell, director of SFU’s Children’s Health Policy Centre. She added that some childhood disorders, including anxiety and depression, can be minimized or avoided if society invests in more preventive measures, such as ensuring struggling parents get more support and that children have their basic needs met.
The system needs more interdisciplinary teams, which include psychologists, nurses and social workers, that are available in the communities where the children live, said Waddell.
“We have those basics, (such as) the MCFD community-based child and youth mental health team, but they are not nearly well-resourced enough. That ministry has been subject to lots of cutbacks over the years,” said Waddell, who also holds the Canada Research Chair in Children’s Health Policy.
Her call for tripling the youth mental health budget is not entirely pie-in-the-sky, she argues, because over the last decade, the autism budgets in both B.C. and Ontario have increased 10-fold, mostly due to intense lobbying by parents of autistic children. The same has not been true for budgets for other mental health disorders, she said.
“Right now there are clearly inequities. If your child does have autism, you have a ticket — not an easy ticket, by any means — but you will have access to more services,” she said.
“(That is) a beacon of what we should be providing to all kids.”
The Potmas agreed to share Josh’s personal and troubling story because they believe their family’s struggle is an example of the lack of treatment and support for children with behavioural problems, compared to services for those with intellectual or physical impairments. In fact, in Josh’s early years they hoped for an autism diagnosis, believing they would receive more services as well as more understanding from society.
“It seems to be the invisible disability — which is harder to identify — that gets left behind,” said Kevin Potma, who works for a grocery store chain.
“Josh could really benefit from (more support) and be able to get through life better. We’d be able to survive as parents better and be able to take care of him better with some of those services.”
Josh’s personality issues intensified at the age of two and he was forced to leave three different daycares.
Each time, the Potmas were distraught because of his unpredictable outbursts but also because of “the judgment pouring down” from the teachers and other parents, Sue Potma said.
By age three, Josh was diagnosed with ADHD and put on medication. He managed relatively well through preschool and up to Grade 2 with the help of education assistants and his parents.
But their shaky house of cards began to crumble in 2016, when eight-year-old Josh was asked to leave summer camps because of his escalating behavioural issues.
That fall he entered Grade 3, and during the school year was suspended three times due to violent or threatening incidents directed toward staff and other students.
“The behaviour became so much more intensified, aggressive. It was just different from anger you see normally. Huge meltdowns, screaming,” said Sue Potma.
More than a year after these symptoms first emerged, Josh’s psychiatrist put him on medication for bipolar disorder in July. Giving this diagnosis to a nineyear-old is unusual, but the disorder runs in his extended family, said his parents.
“He wasn’t the child that we once knew when he was in the throes of this bipolar for 14 months. He was so ill. There were mornings I didn’t want to get up because I was scared of who I would meet — this child that was suffering so badly with mental illness,” Sue Potma recalled.
The medication is helping and Josh is doing better in Grade 4 at a school in Mission that has been supportive of the Potmas. But he still requires constant attention from his parents, who both work full-time and are raising two other children.
In July, Sue Potma asked MCFD for a respite worker with mental health training for a few hours a week to take Josh on activities.
“If there was somebody to encourage him in something that we don’t have time to do,” Sue said.
The request for a respite worker was denied, she said.
MCFD did offer to place Josh in a foster home on the occasional weekend, but Sue Potma said this would never work because he has a sleep disorder and would be too anxious to stay in a new place without his parents.
The ministry is now providing Josh with once-a-week counselling.
In response to questions from Postmedia, MCFD said a family like Josh’s has access to mental health clinics and hospital-based programs and resource centres, as well as a support organization called FamilySmart.
The ministry also echoed Darcy’s promise to work with other government departments to create a new system “that supports families with the full range of mental health services that they need.”
“I know there are many families struggling to find the appropriate supports and treatment for a child with a complex condition, and we need to offer better supports to these families,” MCFD Minister Katrine Conroy said in a statement.
An effective youth mental health system would support the family from the beginning, to avoid a child reaching a crisis and ultimately depending on the adult mental health system, said Bev Gustry, executive director of the B.C. branch of the Canadian Mental Health Association.
That includes providing opportunities for these youth to succeed in school and to have friends, and to keep their families cohesive. “These are areas that make a difference,” Gustry said.
The only extracurricular activities the Potmas have found that are designed for kids like Josh are helpful but short: a one-week summer day camp for kids with behavioural problems at a local church and Challenger Baseball, for children with cognitive or physical disabilities.
The Potmas worry about their son’s future: Will he find a job or hobby that is meaningful?
And will all the medications he is taking continue to work and interact well with each other as he ages?
“I’m actually fearful of the lack of support there is as he goes into his teenage years,” Sue Potma said.
“Will he want to go to school? Will he want to complete school? It’s scary, this mental illness is so up and down. It’s the unknown.”
In the meantime, Josh said he is trying to behave in school and not get suspended from Grade 4.
“A lot of people, they don’t really understand me a lot,” he said. “They just think I’m some normal boy but I’m not. I’m really special. That’s me.”
I’m actually fearful of the lack of support there is as he goes into his teenage years. Will he want to go to school?
Will he want to complete school? It’s scary, this mental illness is so up and down. It’s the unknown. SUE POTMA, Josh’s mother