With families ‘beyond their breaking point,’ watchdog calls on ‘B.C.’ to support young people with disabilities

The province’s Representative of Children and Youth (RCY) says “B.C.” must do more to assist 83,000 young people with disabilities who aren’t receiving adequate supports as families are “beyond their breaking point.” 

On Wednesday, Jennifer Charlesworth released her latest report, Too Many Left Behind — the latest in several sparked by the tragic and preventable death of an 11-year-old First Nations boy in a “Fraser Valley” foster home four years ago.

Referred to in her report as “Colby” — his name and community were withheld to protect his identity — the boy was born with severe, complex developmental disabilities and required ongoing, intensive medical care. 

Colby also needed special attention from his caregivers. He had difficulty swallowing and needed help eating; he also needed numerous and costly medications, as well as transportation to more than 70 medical appointments over his short life — almost one quarter of which he missed.

An earlier report by the independent provincial watchdog, Don’t Look Away, investigated Colby’s story and the circumstances that led to his death at the hands of his extended family caregivers — who were both sentenced to 10 years in prison for manslaughter and aggravated assault.

Among its findings, the report published last year shone light on “the ongoing and overwhelming struggles that so many families caring for young people with disabilities experience when trying to navigate the tangled web of government services with little support and limited resources,” wrote Charlesworth.

“Struggles such as accessing respite, appropriate school inclusion and support, eligibility and timely access to supports and therapies were some of the struggles highlighted,” she added, and those experiences “have been overwhelmingly affirmed” by more than 1,100 families and caregivers surveyed in the new report.

Too Many Left Behind specifically investigates the hardships faced by thousands of families and caregivers in “B.C.” while navigating support systems for their children with disabilities.

“Their message is clear — they are beyond their breaking point and they cannot accept the current service delivery model for young people with disabilities any longer,” Charlesworth wrote, adding in a news release the system “remains underfunded, fragmented and almost impossible to navigate.”

‘Heartbreaking and frankly shocking’

The findings in Too Many Left Behind were based on engagement with families, service providers, disability organizations, and government records. According to the report, only 32 per cent of families and caregivers found the services they received met their children’s needs.

“The report also finds that up to 83,000 young people, 70 percent of the 120,000 people under 19 living with a disability, did not receive the services and supports required for their well-being including respite, transportation to medical appointments, specialized medical equipment and therapies in the community and in school,” said a news release from RCY.

Charlesworth said the “prolonged under-resourcing is resulting in heartbreaking and frankly shocking situations that should be a wake-up call for us all.”

“We listened to families tell us they would give up their kids to get the care they needed, there were others who were close to harming themselves and their children because they saw no other answers, and still others who have been waiting on waitlists as they watch their kids lose their childhood.”

The report found that more than 16 per cent of families with Indigenous children — and 14 per cent of non-Indigenous families — have considered placing their child in “care” of the Ministry of Children and Family Development (MCFD) solely to access disability services not funded if their child remained at home.

“Sadly, this doesn’t surprise me,” Charlesworth told reporters on Wednesday, adding in an email that “we have heard this from many parents, advocates, workers and even people working within MCFD.”

She found that children and Youth with disabilities are vastly overrepresented in the child welfare system, with four-in-ten children in government “care” identifying as having a disability-related support need. 

Further, 20 per cent of families whose children are in the child welfare system report that they came to the decision because they felt it was the only way they could secure the proper support they needed for their child. 

‘I just kept pushing back’

Colby’s story is just one example of how systemic failures in the child welfare system — and other branches of government that affect a family’s well being and unity — continue to leave vulnerable children and their families without the support they need. 

Colby’s complex medical needs would have been challenging for any parent. According to the report, 81 per cent of families struggle to navigate the disability service system.

But for Colby’s mom, who was dealing with the impacts of abuse and intergenerational trauma — and had five children to care for — seeking the support and services that Colby’s complex condition necessitated was even more difficult. Colby’s situation became dire when he was put into “care” with a severely neglectful and abusive foster family.

“I just kept pushing back that we are setting [Colby’s mom] up to fail if we don’t put all the supports in place,” said a participant in the RCY’s investigation into Colby’s death.

Too Many Left Behind falls short of identifying the number of Indigenous families trying to access support both inside and outside the child welfare system. Charlesworth told IndigiNews this is due to a lack of data coming from the provincial government. 

In 2024, “B.C.” introduced the Anti-Racism Act, meant to address such data gaps that contribute to systemic inequalities. The legislation was developed upon recommendations from Kasari Govender, “B.C.’s” Human Rights Commissioner, who, during the height of the pandemic, published a report which called for improved data collection to help dismantle systemic inequalities across all levels of government.

But despite the new legislation, the RCY says there is still no uniformed data system. “Vancouver Health can’t speak to Vancouver Coastal, for example,” said Charlesworth. “And each school district has their own system.” 

Charlesworth emphasized the need for an integrated data system that can communicate across agencies — a responsibility, she says, that falls to the Minister of Citizen Services.

For families to be provided with adequate and equitable support, information needs to be cross-referenced between the Ministry of Education, Ministry of Child Care, Ministry of Health and MCFD, said Charlesworth. 

The report comes after the MCFD paused their recently revamped disability service system, “Children and Youth with Support Needs,” or CYSN. The new framework was based on recommendations from previous RCY reports and other organizations which moved away from individualized care for children with autism, towards a more holistic approach through what the MCFD calls “Family Connection Centres.”

The idea, said Charlesworth, was for children who may have the same diagnosis but who present differently because of varying factors including their home and school life, to be connected to other services in one place. The drawback, she said, “was that the government did a lot of initial consultation, but then developed the model in isolation, without going back to First Nations leadership, community and service providers to ask how do we make it better.” 

The framework was met with deep criticism from both Indigenous and non-Indigenous organizations. The Union of BC Indian Chiefs (UBCIC) stated the model was “steamrolling Indigenous families, and all families of children with disabilities.” 

By imposing a centralized MCFD-controlled system for children and Youth with disabilities without consultation or consent from Indigenous Peoples, the UBCIC said the new model, implemented without free, prior and informed consent with First Nations, is in violation of the Declaration on the Rights of Indigenous Peoples Act (DRIPA).

“First Nations know better than any population that centralizing services for children in government-controlled institutions is dangerous, destructive, and even deadly,” stated Grand Chief Stewart Phillip, president of the UBCIC.

This time, said Chalesworth, “we’ll be looking for a plan that isn’t definitive, but that looks for feedback and consultation with Indigenous leadership.”

Charlesworth noted that revamping large-scale systems is costly. “Anything that’s expensive like this, we need to make sure it’s not botched together,” she said. 

Charlesworth says the RCY would like to see more support for children at a younger age, when they first start presenting a struggle. “We’re seeing tremendous expenditures way down the line,” said Charlesworth, who noted that children and families are frequently turned away at a young age, only for the child’s behaviour to escalate to the point where expensive interventions — such as placement into a group home — become the answer.

“These are [processes] that require us to think about where we’re spending money,” said Charlesworth. “We need to back up the bus.” 

Colby’s death was preventable, and the RCY concluded his story could have been very different with proper supports in place. 

“We will never know for sure if one small action could have changed the trajectory of this boy’s life” reads a statement in “Don’t Look Away,” “but there’s no question that collective action could have done so.”

According to Charlesworth, the “B.C.” government accepted all of the recommendations laid out in Don’t Look Away, and the Premier has laid out expectations in the recent ministry mandate letters. 

“This report makes clear where we are starting from,” Charlesworth said, “and what actions need to be taken now.”