Lack of autism funding leaves B.C. man and his son in a lurch

A B.C. father who says he is beyond his breaking point, is looking for immediate assistance so he can get his autistic child the one-to-one support he needs.

Anthony Cianflone of Saanich says the waitlist to get this type of funding is more than 26 months, and with 66 families ahead of him, he felt like he needed to speak up.

"That's a death sentence to some people."

His son Ronin, 6, has diagnosed ADHD, autism and developmental delay. His intellectual ability is that of a three-year-old, and he has myotonic dystrophy.

Cianflone told Black Press Media that children with these conditions grow into adults, but do live shorter-than-average lives.

"Generally, they don't live past 56 years old at the best of times," he said.

The South Island Child & Youth with Support Needs (CYSN) provides support and services for children requiring assistance through the Ministry of Children and Family Development.

According to a letter from a CYSN social worker, Ronin is eligible for Individualized Autism funding of $6,000 per year and $4,135.56 in direct-funded respite. He is on a waitlist for overnight respite at a staffed facility.

Individualized Autism Funding can support the child's therapy needs, including behaviour, intervention, life skills, social programs, family counselling, speech, language and pathology. It is distributed based on services used by the eligible child, in a 'request to pay' payment structure.

Cianflone said his son received $6,000 in funding for 2023, which he used for before-and-after-school care in the fall and ran out prior to Jan. 1 of this year.

Since then, Cianflone hasn't been able to enrol his son at daycare.

"He's in his own world, and he needs the support of every level of government to function. I shouldn't have to choose between going to work and taking him to the dentist."

While some find themselves turning to online fundraisers for financial help from fellow community members, Cianflone's stance is clear: "This is a governmental issue. And it needs to be dealt with by the government."

The struggles of these families are something Grace Lore, Minster of Children and Family Development (MCFD), is aware of.

In an interview with Black Press Media, Lore said the 2024 provincial budget earmarked $155 million to help ensure that families eligible for individualized autism funding are not turned away.

"An additional $61 million will be invested in services for children and youth with support needs," Lore said. "That will increase the number of people who can access that autism funding."

Lore took on the family and child development file in mid-January. She said she is trying to foster meaningful dialogue with families of autistic children and has directed any affected families to make their voices heard.

The additional funding by the government does not even come close to addressing the issue, says autism advocate Jennifer Newby.

Newby is the co-author of the Parents and Professionals Plan, a PDF written by parents, caregivers and professionals who work with and care for children and youth with disabilities.

"MCFD has limited resources being a social services budget, and families are basically forced to beg for support."

A simple solution to getting funding for families with autism would be to shift away from the jurisdiction of the Ministry of Children and Family Development and put it under the control of the Ministry of Health, Newby said.

"This (autism) is a health need. It needs to be under the Ministry of Health, where we go to get the initial diagnosis."

Newby has experience with two different approaches to autism: the first when her oldest child was diagnosed in California and the other diagnosed in Canada.

In California, services began for her child a year before he was officially showing developmental delays, so support was given to her son early.

"In the States, he was diagnosed, and referrals were made through the health system to connect him to the education system."

The thought of Canada's universal health care was something that Newby was excited about, but the reality soon hit home when her second child was also diagnosed after she had moved across the border.

"They gave me homework and said, 'Go find a social worker, good luck.' And, it was on me to do that paperwork."

She said the $6,000 available to families has not caught up with inflation, so burning through the money is not uncommon as one-to-one support can quickly become expensive.

"It's the Wild West. You'll hear anywhere from $20 to $50 an hour for behaviour interventionists, and most of them schedule two- and three-hour blocks."

There is an option for parents to receive a lump sum payment of the funding, but in order for them to do so, the family must hire an accountant, said Newby.

There are other programs available, too, including the At Home program for eligible children, and the Direct Funded Respite program, which can offer non-direct supports to families, such as hiring a house-keeper or babysitter.

Newby has worked hard to gather as much information as she can about each funding option and programs available – efforts that become essential when the family pulled one of the children out of public school during the pandemic.

"I've 'tetrised' together the home program, the autism funding and the [online schooling] to pay for a wraparound program for him."

The number of children with diagnosed autism has consistently gone up since 2008, increasing from one in every 66 children in B.C. to one-in-33 children in 2020, according to a report from the Autism Alliance.

Newby has educated the general public through a series of TikTok videos, which also highlight the complexities families may face.

"The individualized funding is actually the more fiscally responsible thing to do. This is not the Wild West and a blank cheque."