New BC Funding Model for Kids with Disabilities: Some Parents Concerned

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A Tyee article by Katie Hyslop reports on some parents’ concerns that their children’s needs may not be met under BC’s new disability funding program.

Hyslop interviewed parents Sara Lindberg and Lynn Henderson who, whilst agreeing that “changing the province’s direct funding formula for supporting kids and youth with disabilities is a good thing… don’t understand why the shift in approach will result in a loss for funding for their autistic children’s needs”.

Both Henderson (Fernie) and Lindberg (Port Moody) “have primary-school-aged children with a Level 1 autism diagnosis, as determined under the Diagnostic and Statistical Manual of Mental Disorders. Unlike some people with autism, the children have no co-occurring intellectual disabilities.” As such, these parents’ reading of the implementation guide provided by the provincial government indicates that their children will likely no longer meet the criteria for automatic funding under the province’s new funding model.

In anticipation of the move to the new funding model, the ministry has issued a guidebook for the funding transition. The sample model for “Ollie”, with a Level 1 diagnosis, indicates that this child would not qualify for the new disability benefit and would receive a $3,200 direct supplement and access to government-funded services through one of the government-subsidized child development centres. However, small towns such as Fernie, in the East Kootenays, are not currently serviced by a government-funded child development centre and, even where such centres are in existence, there can be long waits for supports notes Lindberg, whose daughter, based in the Lower Mainland, was referred by her preschool.

The article reports, “Henderson and Lindberg say that because it highlights ‘autism with the most significant and pervasive needs’ for automatic direct inclusion qualification, including ‘profound autism,’ ‘Level 3 autism,’ and ‘autism (any level) AND intellectual disability’, they believe their children will be excluded.’

Some of the concern these parents express centres around their fears for their children’s mental health outcomes if their parents are not able to afford to access enough support for their autism. Their concerns are based on research that “shows an increased risk of suicidality — suicidal ideation, suicide attempts and suicide deaths — among autistic people who do not have a co-occurring intellectual disability…..It’s not the severity of a child’s or youth’s autism diagnosis that predicts increased suicide risk, said Connor Kerns, an associate professor of psychology at the University of British Columbia. Rather, the key factor is the absence of a co-occurring intellectual disability.” Part of the issue for these families is that mental health supports come through a separate provincial funding stream than the disability support, which is linked specifically to the autism diagnosis.

The article gives details of Lynn Henderson’s everyday reality of life with her child, whose condition makes him susceptible to aggressive outbursts. “Both the Henderson and Lindberg families are currently topping up their government autism funding with thousands of dollars of their own money” and are facing significant stress and challenges in meeting their children’s needs and supporting their families. Uncertainty around the upcoming changes is adding to their stress.

The article reports that the BC Disability Collaborative, an umbrella organization of grassroots advocacy and professional organizations representing people with disabilities, their families and the support workers they rely on, put out a press release on June 24th criticizing the new disability benefit and supplement eligibility criteria, questioning whether early intervention will be prioritized and noting a lack of reassessment pathway for children and youth whose needs change over time.

“Families are not simply asking whether some support exists. They are asking whether the support that is available will be sufficient, timely, flexible, and responsive to their children’s individual needs. This is a crucial distinction,” the press release reads. “The Ministry’s response focuses primarily on access. Families are concerned about adequacy. The Ministry states that no child will receive nothing. Families are asking whether they will receive enough.”

The collective wants the province to commit to accountability through publicly documented performance measures regarding the success of the new funding model.

Measures would include wait times for community services, particularly in rural and remote areas; family satisfaction; access to culturally relevant supports; and the effectiveness of early intervention across disability groups.

The article concludes:

Lindberg and Henderson want the province to provide the disability benefit minimum funding levels for all kids with disabilities, not just those with autism. Children with higher needs would receive the $17,000. And both funding amounts would be indexed to inflation to ensure funding levels no longer remain stagnant.

Funding for family counselling should also be maintained, Lindberg added, for parents as well as siblings.

“That is part of the life-saving therapies that people access through this funding,” Lindberg said.

They would also like the maximum family net adjusted income level where the $6,000 disability supplement begins to drop — family net incomes greater than $50,000 — to match that of the federal disability child benefit, which begins phasing out for family net incomes above $82,847.