‘It’s terrifying, it scares me’: B.C. parents worry kids will suffer with changes to autism funding

A change in autism support funding in B.C. is being billed as good for all children, but many parents say it definitely won’t be for their kids. They worry that trying to fit all neurodiverse children under the same umbrella while doing away with the existing funding model will do more harm than good.

The current funding scheme in B.C. allows parents or caregivers of kids on the spectrum to access government money, and then decide how to spend it. Up to $22,000 per year is available for children under six, for older kids the amount is $6,000. The funding can go toward behavioural interventionists, counsellors, speech therapists, and a host of other approved services.

Diane Pearce says the provincial funding her family receives is how they afford a specialized school that is working wonders for their middle-schooler.

“I am afraid to lose this. I am afraid of what’s going to happen,” she said.

Her 12-year-old daughter, Madison, didn’t fit into the public school system.

“The first school … after doing two times in grade two, [we were] told that she’s not going to learn. Her principal and her special needs principal both said I was asking too much, I was a bad mom for expecting too much,” she told CityNews Vancouver.

On Wednesday, the province announced it will halt individualized funding for kids on the autism spectrum in 2025. Funding is instead being grouped together into a system that generally supports kids who are neurodiverse or have disabilities. The aim, according to the province, is to reach more families and make services more accessible.

RELATED: B.C. children with disabilities, neurodiversity gaining more access to info, therapies

Pearce says public systems fall short because kids who have the highest needs get attention, while others on the spectrum can struggle to get help.

“Kids that are (behaviorally challenged) in public schools get more than children that are not. We’ve already walked this walk and it scares me.”

When Madison started to attend a school that specializes in teaching students with learning differences, they saw immediate improvements in her reading and math skills.

“We already know needs-based systems will not work with her. And because she’s high functioning, she’s going to be left behind again,” Pearce fears.

No child should be refused help because they don’t have a diagnosis. We're improving our system to make sure more kids, youth and their families can quickly access info and services based on their needs – without requiring a referral or diagnosis. More: https://t.co/t2YLyGAxET pic.twitter.com/fnFwtMpqbn

— BC Government News (@BCGovNews) October 27, 2021

Madison will be in Grade 9 when the change takes effect. The $6,000 Pearce currently receives from the province only makes a small dent in the cost of her daughter attending the school where she thrives.

“Our share is $23,000 a year, after the $6,000 is gone. So, $6,000 may not seem like a lot of money, but that’s $6,000 that helps us with paying other bills in our home that we struggle to pay.”

She’s afraid of what will happen in Madison’s last four years of high school if they can no longer afford specialized learning.

Leslie Kowarsky is also struggling with the uncertainty that came with the province’s announcement this week. Her family has also found support under the current system that works for her three kids on the spectrum.

“They don’t click with everybody. They don’t all need the same thing. If it’s a government hub, I take the child [there] and then the people who work there decides how much he needs and they give him the speech therapist they hire at that hub.”

Right now, funding can be accessed after children go through the lengthy process of getting an ASD diagnosis. The new model proposed by the province will eliminate the need to have a diagnosis or referral in order to access services and supports through “hub” programs. While eliminating the requirement for a diagnosis is meant to allow more kids to get help sooner, the assessment process is something advocates say can help families figure out what their children need most.

With the current system, families choose a service provider that works for them. Kowarsky, whose 13, 11, and seven-year-old kids are on the spectrum, worries the new “hub” system will take that choice away from families and create an environment where the province decides how much therapy is needed and designates a provider.

“My oldest child Joseph, they might look at Joseph and say, ‘Joseph doesn’t need any help.’ That happens a lot, especially with autistic kids. It’s not always clear, especially if the person dealing with them is just a ministry employee. They’re not the experts. Right now, parents and doctors are making the decisions. This would put the people at the ministry hub making the decisions — how much your kid needs and what they need.”

RELATED: Survey shows B.C. caregivers of kids with autism struggling amid COVID-19

Under the current model, families of children with autism diagnoses can spend their funding on approved therapists listed on B.C.’s Registry of Autism Service Providers (RASP). Pearce says it took a year to find a speech therapist and it was “next to impossible” to find a behavioural consultant and behavioural intervention.

This week’s announcement that the system is changing came as a shock to families who have come to rely on it. Autism BC says it had no advance warning about the changes, and the organizatin has been fielding many calls from stressed parents.

The president of Autism BC says she believes this “hub model” will benefit some families, but worries others will be left behind.

The province’s said the changes were made after “repeated recommendations” from the representative for Children and Youth, and after consultation with “with more than 1,500 Indigenous and non-Indigenous families, advocates and service providers.”

‘She’s happy and I’m afraid to lose this’

Kowarsky says there are a lot of unanswered questions about what the new system will look like, and it’s provoking a lot of anxiety.

“It’s terrifying because we’ve got three kids on the spectrum. We’ve got a system that works for them. We’ve got providers that work for them, and the idea that that’s going to change in some unspecified way is very alarming.”

She feels the province is breaking what’s working under the guise of fixing it and believes the new model effectively defunds supports for children on the autism spectrum.

“What they are trying to do is package two things together and make it sound like in order to support kids with other neurodiversities, we have to remove support for autistic kids. I think that’s a false choice.”

For her part, Pearce tried calling the province for help.

“They said to me, ‘This is for the good of all children. We will put them all in a hub,” she said. “I told the lady on the phone ‘Stop.’ I said, ‘Stop with your spiel. It’s not for the good of all children. Don’t say that to a parent [of a child] with autism, when we’re losing everything and may not get it back.”

“My daughter may not get the help that she needs because she comes across as this happy-go-lucky child … She doesn’t look autistic. I have so many people say that to me. Not all autism is the same. And what people don’t know is when our door closes after she comes home from school, our lives sometimes fall apart. I’ve realized the school that she’s in now gives her life. She’s happy and I’m afraid to lose this.”

RELATED: End of B.C.’s individualized autism funding ‘could be devastating for some families’: advocate

For her part, Kowarsky stresses funding for all kids with neurodiversities or disabilities is necessary.

“Right now there’s no real system through the B.C. medical system for kids who are neurodiverse in other ways to get support. Getting them support would be a good thing,” she said.

But she doesn’t believe this is the way to do it.

“I would like to see them get support the way the autism funding support works, which is the parents have a certain amount that they can direct to service providers,” she proposed.

“Let’s do that. We could do that. It is not necessary to take from some kids to give to other kids. We can give these basic services to all kids.”

Pearce agrees.

“They need to leave the autism [funding] alone and start up a new department because autism is already having a hard time.”