Inclusive summer camp set to expand in HRM, but some say access still limited

Halifax Regional Municipality is expanding one of its inclusive summer programs, but some families who have children with disabilities say the recent changes aren't enough. 

Most families can register for up to eight weeks of camp through the municipality, but kids who require one-on-one support like 12-year-old Lucy Langley are limited to three weeks.

"It's not equitable, it's not inclusive and it doesn't make sense to me," said Heather Langley, Lucy's mother and caregiver. 

Lucy, who has Wolf-Hirschorn syndrome, autism and epilepsy, loves going to camp, but she requires around-the-clock care. She's attended HRM summer camps for several years, and Langley said she's impressed by the staff who always ensure Lucy is safe and has fun.

But Langley desperately wishes Lucy had the chance to go to camp for more than three weeks just like her older daughter, who is neurotypical, always did. 

"That's a significantly better environment than me hiring one person to take her around by herself," said Langley. "She should be in the community. She should be with other children and having fun. That's what kids want to do in the summer."

This year, 130 kids are registered for HRM's inclusive camps and there are more than 50 on the waitlist, according to Ryan Nearing, a public affairs advisor for the municipality. That's up from 117 inclusive requests in 2023.

Deputy Mayor Cathy Deagle Gammon raised the issue at a February budget committee meeting.

"There is a significant amount of families — two-income families — that become one-income families in the summer. People that become part-time employees, as opposed to full-time," Deagle Gammon said, referring to parents and guardians who must take the summer off if they can't find inclusive camps or child care.

The municipality's 2024-25 budget, approved Tuesday, includes $205,700 to "increase access to recreation inclusion support" and expand Ready for Rec, a five- to six-hour a day summer program for youth who need additional support and accommodations.

Earlier this week, an HRM spokesperson told CBC News that municipal staff couldn't speak to the proposed budget before it was approved, but according to a Feb. 6 report, the money would allow Ready for Rec to expand from three to five locations. This could make room for about 20 more participants.

The February report also found that offering four weeks instead of three weeks of inclusive camp over the summer would require a "large increase in staffing, an increase in wages and increased overall capacity (space) in camps," and therefore would not be feasible this year. 

Parents can request more than three weeks, but there's no guarantee. That leaves families like the Langleys left to fill in the gaps.

Langley and her husband often have to take separate vacations from their full-time jobs to make sure someone can take care of Lucy for the weeks she's not in camp. 

"It's like being penalized for wanting to be part of the workforce and be a taxpayer, and having a child with a disability," Langley said.

For families like Keith Lawlor's, there are additional challenges. 

His 13-year-old son William has severe autism and is non-verbal. He's attended HRM's inclusive camps for years, and Lawlor said he's always looked forward to seeing the other kids and staff.  

But this year, Lawlor said William has aged out of the camps and is only eligible for the Ready for Rec program, which runs daily between 10 a.m. to 3 p.m.

Lawlor said this is too much of a hassle, since he and his wife work full time and would need to hire someone to take William to and from the program. They decided on Monday to take William's name off the list.

"My wife and I are always saying that we're in a constant state of grieving that our child doesn't get the — quote, unquote — normal life that every other child should get," said Lawlor.

Instead of going to camp this year, William's parents will spend thousands of dollars on a respite worker to care for him at home throughout the summer. 

"For him to be home alone with no other children around — that's a huge loss for him," said Lawlor. 

"I don't know what the answer is as far as funding, but I know they need to look at more than $200,000. That's a totally inadequate number." 

Next summer when Lucy turns 13, Langley will be in the same predicament as Lawlor. 

"It shouldn't be a stressful burden on parents like me during the summer to be, you know, scraping and scrounging to find care for our kids," she said.