Family hitting roadblocks in finding help for son with complex needs
HALDIMAND—For families supporting children with complex physical and mental health needs, finding appropriate care can often be as challenging as navigating the conditions themselves.
One Haldimand family is sharing their experience in hopes of drawing attention to the gaps in treatment options, supports, and resources available for youth who require care beyond what the current system can provide.
To protect the family’s privacy, the names of those involved in this story have been changed, with identifying details removed.
Tyler was born 16 years ago and was diagnosed with cerebral palsy, receiving a second diagnosis of left-sided hemiplegia a couple of weeks later.
His mother Betty recalled, “We didn’t know what that was going to look like. They didn’t know if he’d walk or talk.”
While Tyler overcame hurdles thanks to therapy and leg braces, by the time he turned six his family had started noticing behavioural issues, eventually leading to another diagnosis of bipolar disorder.
While his family has advocated for and supported Tyler over the years, a devastating house fire less than two years ago marked a turning point.
“Ever since then, his mental health has really declined,” said Betty, noting her son has been admitted to McMaster Hospital’s Child and Youth Mental Health Inpatient Unit no fewer than five times over the past 18 months.
Betty described some of the symptoms Tyler has displayed during moments of crisis.
“He’s assaulted me. He’s assaulted hospital staff. He’s gone AWOL in the community. He once tried to cut his throat, and the OPP had to de-escalate the situation,” said Betty.
She quickly added, “But that’s not who he is. That’s his condition. I can’t stress that enough. He’s been through so much.”
“He’s been at the hospital more times than he’s been at home, I’ll just put it that way,” she continued.
She said living in Haldimand-Norfolk is challenging due to a lack of available programming for people with a complex diagnosis like Tyler and a provincial hospital system ill-equipped to handle youth patients with complex needs.
“My son has a diagnosis of bipolar disorder, but he also has cerebral palsy, which is a brain injury, and he has developmental issues as well,” she said. “So there’s really nowhere for him to go.”
While Tyler has received care during periods of acute crisis, Betty said once he is stabilized, he and others like him are often discharged with few options.
“When they’re released, there’s nowhere for these kids to go,” she said. “A lot of these kids are ending up in youth shelters or they’re ending up on the streets.”
Despite the severity of his condition, Tyler was released from McMaster following his most recent stay and, according to Betty, told he did not qualify for secure treatment.
“The problem is there’s no real treatment in our area…. The waitlist is about 18 months for most of those programs,” said Betty, explaining why the family chose to travel to Timmins, where Tyler will spend the next seven to nine weeks in a voluntary treatment program combining medication, counselling, and evidence-based therapies such as cognitive behavioural therapy and dialectical behaviour therapy.
She said Tyler has been in crisis several times over the years, but a secure treatment bed has never been available when he needed one.
Dealing with Tyler’s needs eventually forced Betty into an extended leave of absence from work last November and into a full-time caregiver role. School is not currently an option for Tyler due to a lack of available onsite support.
The situation has had a profound impact on the entire family.
“My husband’s working as much as he can. My mother had to sell her house and move in with us to help me care for our three-and-a-half-year-old,” said Betty.
Taking Tyler to Timmins required fundraising to cover travel and accommodation costs.
“I did a bake sale, and it was very successful because I make a mean tart,” said Betty, noting costs for travel and accommodations have “quadrupled in price” due to the ongoing wildfire crisis and the thousands of people displaced by it.
“We just got to Timmins, and it cost $1,100 for three nights in a hotel,” she explained.
While Betty hopes the treatment program will provide Tyler with the support he needs, she also hopes sharing his story will bring attention to the challenges facing families navigating similar situations.
“If everyone just hides the struggles, then you’ll never have resolution, right?” she said.
While she praised the local team at Haldimand-Norfolk REACH, noting Tyler has received support there, she said even those resources are stretched beyond capacity.
“They’re depleted. We had a meeting about my son to see if we could find something closer, and the consensus was there’s nothing.”
During his most recent McMaster stay, Tyler celebrated his 16th birthday and made a confession to his mother that left her devastated: he wanted to receive MAiD (medical assistance in dying) as a birthday present.
“Honestly, that’s what’s caused me the most tears. That’s what’s broken me the most,” said Betty.
She urged people to see beyond the behaviour that can accompany complex diagnoses and recognize the person underneath.
“Anyone who knows my son when he’s not in crisis – when he’s not struggling with behaviours caused by his frontal lobe injury – knows that he loves animals,” she said. “He’s not a perfect kid, but that’s due to his diagnosis. He’s actually very sweet. He’s the sweetest kid you’ll ever meet.”
She continued, “He has so many good traits. He’s empathetic. He makes the funniest jokes. A lot of them are inappropriate, but they’re still really funny. He’s a good, well-rounded kid.”
Betty also praised Tyler’s commitment to seeking treatment, saying he is “very motivated to stay here (in Timmins) and get as much help as he can.”
Beyond his diagnosis, Tyler has also faced outside pressures that have made life more difficult.
“He’s been groomed online, he’s been bullied, he’s had a really tough life,” said Betty. “All kids are vulnerable, but when you add those extra layers, they’re even more vulnerable.”
Part of the challenge, she believes, is a healthcare system where resources are stretched across too many areas.
“If you have a family whose child is going through chemotherapy, they’re going to fight for funding. If you have a family whose child has Type 1 diabetes, they’re going to fight for funding,” she said. “But we all have the same goal, and that’s to save and protect our children.”
Betty has also tried bringing her concerns directly to the provincial government.
She said she reached out to Premier Doug Ford, who left her a personal message connecting her with Minister of Children, Community and Social Services Michael Parsa.
“He was empathetic. He was sympathetic. He said, ‘This is horrible. We’re going to find help for you and your family,’” said Betty.
While she has since been in contact with ministry staff and provided documents and reports, she said no concrete plan for help has been presented.
Despite her exhaustion with a “system that’s simply not equipped to deal with complex needs,” Betty said she will continue advocating for her son.
She remains hopeful the Timmins program will help Tyler find stability.
“After this program, we’ll have to see whether he’s stable. If he’s doing well and has maintained a significant period of stability, then he’ll come home and we’ll look at day treatment, depending on the waitlists. Otherwise, we’ll have to look at step-up, step-down beds, which provide a gradual transition back into the family home.”
