‘Literally destroying parents’: Staggering number of children with disabilities not getting help needed

Families of children with disabilities say they're at their breaking point, struggling wit ha system that is underfunded, fragmented and hard to navigate.

An alarming number of children with disabilities are not getting the help they need.

That’s the finding of a damning report from B.C.‘s Representative for Children and Youth (RCY) who says the time for government to act is now.

“A staggering number of families are at their breaking point, living within a system that remains underfunded, fragmented and almost impossible to navigate,” said Representative Jennifer Charlesworth. “They have been waiting too long for change and they can’t wait any longer.”

The report, titled “Too Many Left Behind,” is calling on the province to address the “urgent needs” of up to 83,000 young people with disabilities who are not receiving adequate supports.

Vancouver mom Erica Forrest told CTV News her young son is one of those who has been repeatedly let down by the province.

“This system is literally destroying parents, caregivers, because of how broken it is,” said Forrest.

Her son Jaxton, eight, was born with a rare genetic condition.

“Jaxton’s got Mowat-Wilson syndrome and he is missing a chromosome,” she said, explaining that he is non-verbal, tube fed and also has cerebral palsy. He needs a wheelchair to get around.

She said she’s constantly fighting to get her son the supports he needs.

“It comes down to our mental health. And if it’s choosing his mental health or my mental health, I will always choose his. Let’s just say, I’m very numb at this point,” said Forrest.

In a survey of more than 1,100 families, just 32 per cent said the services they receive meet their children’s needs.

Twenty per cent of families surveyed, whose children are in government care, reported they gave up their kids because it was the only way to get the supports those children needed.

The finding did not surprise Charlesworth.

“That’s the sad thing, because we hear that often, for many families. They just say, ‘I’ve tried and I tried and I tried and I’m not getting what they need,’” she said.

But even once in ministry care, Charlesworth said, there is no guarantee the children will receive extra resources.

“Kids may not be better off and sometimes kids are getting hurt while they’re in care,” she said.

The report found an underfunded system facing increased pressure as a growing number of children are diagnosed with disabilities.

“So we’re seeing, essentially, the same amount of money have to go further to try and address the volume,” Charlesworth explained, adding that available funding needs to be better spent.

“We’re seeing six-, seven- and eight-year-olds who are in group homes. Those are incredibly expensive,” she said.

According to Charlesworth, group homes can cost “hundreds of thousands of dollars in the course of a year.”

“Is that the best use of money when we knew that the family was struggling when the child was three and now they’re eight and no one can provide the care?”

The report also looks into government expenditures on services for young people with disabilities over the past 18 years.

The analysis found that even though expenditures increased by 190 per cent during this period, most of the spending growth went to salaries, as well as a narrow set of programs.

In responding to the report, Jodie Wickens, B.C.‘s minister of children and families, said that her “expectation as the minister is that families have what they need to raise their children.”

She said the province has already brought in some of the needed changes as it works to address additional issues.

“Immediately, we’ve provided more funding for respite. Immediately, we’ve provided more therapy services. We’ve also created a provincial therapy team to address recruitment and retention issues in rural areas of the province. We have looked at assessments and streamlining assessments, so families are waiting less time to get their child the assessment they need,” she said.

“So absolutely, we are taking action immediately.”

“I’m first and foremost a mom and an aunt of children with disabilities. I’ve worked in this field and I’ve met with hundreds of parents who have told me how stressful and hard it is … to raise children with complex needs,” the minister added.

But the changes her ministry has made have not helped Jaxton, whose emotional mom said she won’t stop fighting for her son.

“If there’s a will, there’s a way. I will always find a way for him,” she said.