While many celebrated the province’s announcement last week to keep individualized autism funding and pause the introduction of hubs serving all special needs children, others are disappointed.
“David Eby is the Grinch who basically stole my Christmas. He stole the ability that I saw of getting help,” said Kutrina Shumuk, a mother to twins with fetal alcohol spectrum disorders (FASD).
Shumuk, along with other families with FASD, has been struggling to get much-needed services such as therapy, speech and language pathology and respite, often having to pay for them out of pocket.
An FASD diagnosis often precludes children from service programs in B.C. communities which require an autism diagnosis, explained Bonnie McBride, president of Inspire Kids, which advocates for children with FASD.
And FASD families face additional stigma and discrimination, said McBride, as “Indigenous moms and moms who come from poverty are questioned about whether or not they drink during their pregnancy, and white affluent mothers are not.”
The lack of support has forced Shumuk to make the “hard choice” to give up custody of her son to her ex-husband.
“Because my son’s needs are so great that I can’t do it without supportive services,” she said, adding the experience of being separated has been “traumatic” for her children.
The province’s earlier decision to introduce 40 one-stop-shop hubs to support children with various special needs and treat those yet to be diagnosed was opposed by 34 autism-related organizations, who worried the new system was too “generalized” and lacked clarity. They applauded the announcement to reverse it.
McBride, however, said the hub system was “a huge step in the right direction” for underserved communities such as those with FASD as there were no services to begin with.
Shumuk added that the hub system had given her hope that services she had waited “for years” for were within her grasp. And Eby’s announcement took it away.
“Things would be so much different (if I had support). I wouldn’t have to be on welfare, I’d be able to hold down a full-time job… I’d be able to have my kids in the local community school,” she said, adding she faced animosity from some in the autism community for speaking up against the changes.
McBride, whose organization has been working with the province to make support more inclusive, said the main challenge preventing stakeholders from working together is the current diagnosis-based system.
“It’s easy for people to feel protective of the service providers and firms that are working for them,” she said, but added organizations such as AutismBC have committed to making sure the province’s model is inclusive.
Eby also announced the government would develop a new system of support and promised investments to support children with disabilities and underserved needs, such as FASD, but no details were provided.
McBride said it was a “disappointment” Eby’s announcement came with “no timelines and no tangible budget” to inform families of what to expect in the next six to 12 months.
“The only acceptable path forward is complete equity for every child in B.C. with a disability that needs support,” she said.
Underserved children and families need help now: B.C.'s representative for children and youth
The province's representative for children and youth, Jennifer Charlesworth, issued a statement on Friday to address the decision. Charlesworth showed similar concerns as McBride, stating that she expects to see "a substantive commitment of new funding (to support underserved children) in the forthcoming February 2023 Provincial Budget."
She noted that the issue is "much bigger than sustaining individualized autism funding" as there are more than 8,000 children and families currently excluded from services for children and youth with support needs.
Charlesworth added that the current "exclusionary criteria" of such services "infringes on the rights of those children who do not have the right diagnosis and are left with no supports at all."
She also acknowledged that there were concerns with the hub model rollout, such as the lack of commitment to long-term funding to fill service gaps and the lack of consultation with Indigenous communities.
Although Charlesworth is encouraged that individualized autism is here to stay and supports the province's consultation plans, she emphasized the urgency of helping underserved children and their families.
"Children, youth and their families who are currently receiving no support cannot wait for consultation to occur and frameworks to materialize," she said.
"The current system is inequitable and it is delivered unevenly across B.C. It is also insufficient to meet the current needs, marked by lengthy wait lists for assessments and services and, in some cases, offering no help at all."