A “needs-based” model for families with children who have special needs to access funding and resources was “absolutely, totally” developed without consultation with those in the autism community, critics say.
“I don’t even think they had a parent that does autism treatment in their home,” Nancy Walton, executive director of the Autism Support Network Society, said Friday (Oct. 29), of a committee tasked to overhaul the funding system that serves children and youth with autism and other neuro-diverse special needs.
Walton – a former White Rock resident who became hyper-familiar with the challenges of securing funding and services through years of fighting for support for her son, Casey – said she was among autism-community representatives whose applications to be on the committee were declined.
“They made it clear that you had to be… very collaborative. And generally, I am. I think they just didn’t want anybody going against what they’re saying. They already knew what they were going to do.”
The provincial government announced Oct. 27 the creation of “one-stop family connection hubs” that will enable quick access to information, expert intervention and therapies. Launching B.C.-wide in 2024, the supports and services will be available from birth to age 19, and will be based on a child or youth’s individual needs, regardless of whether they have a referral or diagnosis, a news release states.
It’s anticipated that the new system will provide help to approximately 8,300 more children.
“The existing patchwork of programs has left too many children and youth with support needs behind,” Minister of Children and Family Development Mitzi Dean explained in the release. “That’s why we’re putting children and youth at the centre of our new system and making it easier for families to get the high-quality services they need, regardless of where they live in the province.”
Dean said that children with autism and their families will receive the same level of support through the new hub system. She also promised the province would communicate any changes in advance to make sure families are supported through the transition.
But Walton said the new model will set parents of autistic children back, by phasing out an individualized funding model that allows access to evidence-based treatment, and potentially reducing access to established behaviour-intervention programs. There have been no assurances that hub case managers will be qualified to direct parents to appropriate treatment, she added.
She predicted a pledge of reduced waits for assessment will only result in an increased wait for services.
“We don’t believe for one second that wait lists are going to disappear,” Walton said, noting “horror stories” are coming out of a similar system in Ontario.
For South Surrey mom Roxanne Black, a longtime advocate whose son Reid has also aged out of the autism-funding system, the government announcement is yet another call to action to ensure that hard-fought supports currently in place aren’t lost.
“We are mobilizing and we are going to fight back,” Black said, citing plans for protests later this month outside of the B.C. legislature and across the province.
Noting she has been “full-on and just pretty disgusted” since the news, Black said her focus is “all about helping the kids coming behind us.”
Black had access to direct funding for her son, who is now 19. She said while she was able to “really stretch that dollar to make sure every cent of that money went right to his treatment,” under the new model, “by the time the NDP pays for all these hubs… how much money do you think is going to trickle down to the kids?”
“They’re going to set us back 20 years,” she said.
As well, “they’re pitting people who have children with disabilities against one another.”
The government news release states that individualized autism funding will be phased out in 2025.
The needs-based approach, it says, responds to “repeated recommendations” from the representative for children and youth, the all-party Select Standing Committee on Children and Youth, and calls for change raised during consultation with more than 1,500 Indigenous and non-Indigenous families, advocates and service providers.
A handful of agency officials are quoted as supporting the transition, including Doctors of BC president Dr. Matthew Chow, Progressive Intercultural Community Services president Satbir Cheema and Canada FASD Research Network executive director Audrey McFarlane.
McFarlane describes the new plan as “bold” in its restructuring of services, and that it “addresses the levels of complexities that exist in many families.”
Jennifer Charlesworth, B.C. representative for children and youth, has said she is “optimistic about the long-range plan,” but that government will need to ensure the transition is smooth and communication is strong to ensure access to care is improved for everyone.
Black said the protest outside the legislature is set for 11:30 a.m. Nov. 24. Buses are being organized, and ferries have been booked.
For those who can’t attend but want to support the effort, similar events are being organized across the province. For information on plans in specific communities, Black may be reached at email@example.com
– with files from Cole Schisler
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