Lack of help leaves some children 'excluded and marginalized'

After living in Yellowknife for 15 years, Katie Johnson feels now might be time to move out of the city.

Johnson says her attempts to find an after-school program that suits her son Eddie, who is autistic, feel futile.

For six-year-old Eddie, Johnson says the only appropriate program available each summer is an Experience Summer program, organized by the N.W.T. Disabilities Council, which helps children with special needs go to camp by giving them the company of a support worker for two weeks.

After briefly being waitlisted to join the program this year, Eddie was eventually offered one week. Even so, Johnson feels the program is not enough to keep children busy through the remaining vacation, which typically lasts eight to nine weeks.

"Even with those two weeks, there's still another month and a half, at least, that families are having to balance taking time off work. This means the child isn't participating in those social and exploratory experiences that are so key for their development," she told Cabin Radio.

"Or, families are having to look at paying people to attend camps along with their child, in addition to having paid for the camp."

Johnson said she is grateful to have an employer that allows a flexible schedule, though that may not be the case for other parents. An autism support group on Facebook, with close to 84 members, acts as a place for locals to share concerns related to accessibility or seek help from other parents.

"There's just that constant juggling. We have some really amazing friends in town who step in and offer to be sort of on-call as we need. The community of Yellowknife has been amazing in supporting us, as well as lots of other families, but it's just the lack of more systematic supports that we can't access," Johnson said.

"Even with the resources that do exist, it's not enough for how many children have disabilities. Especially as the population of the NWT grows, and as awareness around disabilities increases and people are seeking those supports more, then the programs that are already oversubscribed are just becoming that much more oversubscribed."

Last year, Children's Autism Services of Edmonton opened up space in its summer camp for N.W.T. children who had evacuated. This year, Johnson plans to send Eddie back to that camp.

With fewer resources outside school, she said her family's mental health is being affected and leaving the territory seems like the best option.

"It's always something that is in our mind: what can we do to make this work?" Johnson said. "But then also recognizing that without supports, eventually we can't make it work."

First come, first serve

Stephanie Williams, a spokesperson for the N.W.T. Disabilities Council, said it offers various programs that support children with special needs.

Besides the Experience Summer program, an Early Childhood Intervention program caters to children aged up to six. A child would typically be put on a waitlist then join at age two or three until they transition to school.

Demand for the Experience Summer program is high with limited spots available, said Williams, and families are accepted on a "first-come, first-serve basis."

"Families do get two weeks and we do that just so we can support as many families as possible during the summer, so that each child can at least have an opportunity to be in camp with the peers," she said.

NWTDC's executive director, Denise McKee, said the Department of Education, Culture and Employment funds the Experience Summer and Early Childhood Intervention programs and "has provided modest increases to this funding over the years."

A City of Yellowknife grant program contributes additional funding for Experience Summer. The Department of Health and Social Services funds one Early Childhood Intervention staff member.

But McKee said a shortfall of federal funding through the Canada Summer Jobs program caused a loss of revenue this year. Despite multiple attempts to reach Employment and Social Development Canada, which runs the Canada Summer Jobs program, Cabin Radio received no response.

"Demand for these two programs has significantly increased over the past few years and funding from all sources has not kept pace to meet that demand," said McKee.

"The result is families are left without the support they require and, subsequently, their children are excluded from participation and marginalized."

The disabilities council isn't the only group reporting a similar problem.

Chelsea Thacker at the Northern Mosaic Network, the territory's outreach program for 2SLGBTQIA+ youth, said the charity did not receive "a large portion of funding necessary to put on the camps this year." As a result, a summer camp had to be cancelled.

'Our hands are tied'

Some parents try relying on the city's daycares to provide the extra support they need. That isn't always easy.

Sarah, not her real name, said on one occasion her son returned home "covered in scratch marks" following an altercation with another child at a daycare – an outcome she feels could have been prevented.

She said the incident occurred at Yellowknife's Centre for Northern Families, where she also said her son was left unattended two years ago in the facility's outdoor play area.

"My son is pretty tall and he knows how to open the gates as well. So, we're just really lucky that he didn't manage to get the gate open and that the coach had actually noticed him later on outside, playing on the play structure, because he could have opened that gate and walked off," she said.

Sarah claims staff couldn't confirm how long her son was outside and she was only informed about the incident at the end of the day.

Despite those concerns, she stressed daycare members had been "absolutely incredible and really went above and beyond" in their work, adding "overall, the care was good."

Karen Rawson, the daycare director at the Centre for Northern Families, said the absence of the child in question was noted during a head count "taken within minutes of the children going inside, and was promptly brought back to the group."

Rawson said the event was immediately reviewed and discussed with staff to ensure lessons were learned. A carabiner was installed on the play area's gate as an additional safety measure. The facility has taken steps to "rectify the issue and limit the likelihood of similar incidents occurring in the future," she said.

"For instance, a staff member now remains outside and clears the play area to ensure that all the children are back inside the building. Please note that it was a staff member’s first day as an ECE summer student," she explained.

Rawson pointed to broader challenges beyond daycares' control that she said must be addressed.

While ECE has increased support for programs like Supporting Child Inclusion and Participation (SCIP), which offers $1.7 million annually to create community play-based programs, Rawson said "our hands are often tied when it comes to obtaining additional support for special needs due to financial constraints and a lack of qualified individuals trained to work with special needs children."

Sarah has since relocated for work to a southern province along with her family. Looking back at her time spent in Yellowknife, she said options to enrol her son in other daycares were limited and there were long waitlists for various forms of therapy.

"When we were thinking we might have to pull my son out of that daycare, potentially, there wasn't really anywhere else that we could send him that was licensed," she said.

"When you have children who do have special needs – that need help with regulating some of their emotions or [have] sensory issues – I don't think a lot of these families are getting very quick access to the support they need through the territory."

What does the GNWT offer?

Umesh Sutendra, a spokesperson for the NWT's Department of Health and Social Services, said the department has a child development team that offers:

• two Child Development Team (CDT) coordinators that help families of children with complex needs navigate the HSS system, provide case management support, and coordinate school and health or rehabilitation supports;

• two Territorial Specialist, Autism Spectrum Disorder positions who provide support to regional staff, helping to offer specialized services for clients with suspected or diagnosed autism; and

• Youth FASD Services, a territory-wide service that provides diagnosis and support for youth who have had prenatal exposure to alcohol.

The department said it funds respite services at NWTDC as well as Inclusion N.W.T.

"This service delivers safe, individualized and flexible in-home or in-community respite supports to provide breaks for primary caregivers and offers persons with disabilities more opportunities for inclusion in their community," Sutendra said.

Sutendra said rehabilitation services like speech language pathology and occupational therapy are available through teams in Inuvik, Hay River, Fort Smith and Yellowknife, but a national labour shortage means there's a high vacancy rate among those positions.

Limited resources have affected "the needs of children in the 0-5 age group and children with complex needs," he added, saying officials "continue to review service delivery models to support the needs of residents while ensuring limited resources are targeted at those who are in most need."

Erin Mohr, a spokesperson for the Department of Education, Culture and Employment, said the department offers inclusion funding to support children above the age of five who attend licensed early learning and childcare.

Mohr said licensed family day homes can access a special needs rate to offset costs, while the department is receiving $7.8 million from Ottawa over three years for childcare spaces that "promote the participation of diverse families and children five years and younger enrolled in licensed programs." ECE said it provides $31 million a year to education bodies for inclusive schooling.

According to Mohr, NWTDC receives $362,000 a year from SCIP to support Experience Summer and Early Childhood Intervention.

While HSS and ECE each said they have no plans to introduce additional supports for children with disabilities, Mohr said ECE was "reviewing the current approach to early learning and childcare inclusion programs and services."

"By 2025-26," Mohr said, "a plan will be implemented that ensures all children who need enhanced or individual support have access to childcare spaces that meet their needs."

In the meantime, affected families do what they can to adapt.

Michelle Reddick said she and her partner find it difficult to hire skilled people in Yellowknife to take care of their son, Ethan.

"You need someone with the special skills. You can't just get anybody that's going to be able to do the job because it is quite a hard job to do, especially when you have a kid that is nonverbal, right?" Reddick said.

"You have to teach them everything that the child's familiar with … We basically did have to kind-of give up because it's just too stressful on everybody."

Reddick said she works through her lunch and leaves work early to pick up Ethan when school ends. In the summer, she uses vacation days to take trips with Ethan if support isn't available, otherwise "it would be eight hours a day for $25 an hour – that's the whole summer."

"This year I'll be working from home," she said, "just trying to get work done and look after my son at the same time."

Aastha Sethi, Local Journalism Initiative Reporter, Cabin Radio