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Plethora of problems for B.C. families with children of complex needs

Abbotsford News - 5/15/2024

B.C. children with complex needs in are facing significant challenges in obtaining the funding and support they can receive.

Families with children who have disabilities can face high costs, and some say they lack adequate government support. Black Press Media spoke to three families struggling to make ends meet and get the proper care for their kids.

These families have extraordinary expenses, with many having no choice but to make their changes to their homes and vehicles to make them more accessible and safe. These are needs that are not supported by government programs, according to Brenda Lenahan, co-founder of BC Complex Kids.Families with children who need additional support can access funding for a support worker through the Supported Child Development Program, operated by the Ministry of Child and Family Development (MFCD).

However, families waiting for this funding will still have to fork out large sums of money to get help for their kids.

"They give you $22,000 a year," said Victoria's Peter Clark, who has a son with autism. "I think I went at least $6,000 over."

He was encouraged to apply for the Supported Child Development program after his child received an autism diagnosis when his son was two and a half years old.

"Autism is the funded golden diagnosis," said Margo Levae, who appeared at the select standing committee on finance and government services in Abbotsford in June 2023.

Her son has Bryant-Li-Bhoj syndrome, which is characterized as having developmental delay and intellectual disability and requires one-to-one support 24 hours a day in all settings, according to Levae. She also adds parents trying to access support child development programs often pay out of pocket for support.

"Hiring private support is probably between $25 and $35 an hour, which is what we pay for that type of specialized support," said Levae.

Families with children under six years old can claim up to $22,000. However, this will only allow 930 hours of care for the family and their children.

Levae's family pays $700 monthly for two hours of aftercare per day during school months, increasing to $1,600 when school is not in session. She said she is lucky because her family has a dual-income household, but many others are less fortunate.

"Many parents can't do that, and there are many different barriers for these families," she said.

Levae said these barriers might include being in a solo family, lacking English ability skills (language barriers), or living in a rural area where they cannot access services.

To obtain access to the Supported Child Development programs, a family typically goes on a waiting list, and then, through good luck and the right timing, they progress off the list.

Most parents of typical kids will understand the challenging experience of obtaining a spot for their kid in childcare. However, an extra layer of complexity exists for families raising medically complex children when the family needs to obtain Supported Child Development funding.

"Those things have to happen and come to be at the same time because you can't use your Supported Child Development funding unless you have a spot, and you can't get a spot if you don't have the funding," Lenahan of BC Complex Kids said.

For the most part, these children often require specialized care.

"The people they hire for that one-to-one support often end up in low-paying work, lower than an early childhood educator end up in low-paying work, lower than an early childhood educator (ECE)," Lenahan said. "Sometimes, they might be hired as somewhat unskilled support workers."

BC Complex Kids is advocating for an on-demand funding model where families are not waitlisted for support worker funding.

"We become empowered with the funding as opposed to the opposite," she said.

Families with children aged six to 12 can apply to access the Supported Child Development program, but many families need ongoing assistance for their kids.

"It also continues beyond that," Lenahan said. "We still need support for after-school care when our kids are 14 or 15 years old."

Lenahan is not a natural-born advocate but was forced to act after she had her son Cole and the challenge of trying to get help.

"We got angry, and we are like, 'holy smokes, we're going to have to spend our free time that we don't have to advocate because this can't go on,'" she said.

Anthony Cianflone is currently on the Supported Child Development waitlist after exhausting autism funding for his six-year-old son Ronin. He was given three months of childcare but said that this was inadequate.

Ronin has a vast array of needs, as he has ADHD, autism, and a developmental delay. His intellectual ability is that of a three-year-old, and he has myotonic dystrophy.

Cianflone's Ministry of Education and Child Care letter said the province supported 2,690 children.

An additional $30 million was provided to Aboriginal Supported Development Programs and Supported Child Development Programs in addition to the existing $80 million budget.

A support worker was assigned to look after Ronin but decided to leave the position after a few days, according to Cianflone.

"The fact that this person signed on, worked for two days, and then just out of the blue was like, 'I can't handle this,' and quit — it just summed up everything I'm going through," Cianflone said.

Vanessa Taylor of Langford said her initial experience with the supported child development program was positive. She had spoken to a representative at MCFD, who explained that her child was number one on the list. She had arranged to hold the funding until a space at a daycare opened up, but nothing happened.

"I never got in," she said. "But I know families of children that got in before me, even though I was first on the list and their children weren't neurodiverse."

Taylor's son remained on the waitlist for almost two years with no movement. Meanwhile, she would make phone calls to MCFD to find out if there had been any progress in getting support.

"I had one child on a waitlist for so long that my second child needed to be put on a waitlist, and still no spots, no budge, nothing," Taylor said.

It reached the point where Taylor and her husband gave up on securing a spot at daycare and started looking at alternative options, such as hiring a nanny to help care for her son. An option that no longer exists.

"Let's say I hired a nanny, and they wanted to be paid $25 an hour. Supported Child Development would pay, for example, $15 an hour," she said. "And then I would supplement the $10 difference."

Still, finding a nanny was not a joyful experience, as the family could not hire anyone. Specialized training was needed to provide the right level of care.

"Supported Child Development has since changed their policy and they're not doing that anymore," she said.

Taylor, who is Indigenous, noted the intersectionality between supported child development and the trauma faced by Indigenous peoples.

"It's a relatively small population, but they need a lot of support."