(Canada) NS: "The number of five-year-olds diagnosed with autism has increased substantially"

Jan 13, 2025, Cape Breton (NS) Post: "This is a big problem here'; Cape Breton parents of children with autism say more programs needed

Stephanie Grant’s voice is filled with her frustration over the lack of child care options for her three children with autism.

Her two oldest (ages 10 and eight) have been diagnosed and “the baby” (age five) is in the process of being diagnosed.

All three don’t speak, however, Grant said the baby is beginning to speak. All three use diapers and have different behaviours and needs. . . .

There is little childcare support available to Grant through family and she understands why. Her parents are older and I have difficulty keeping up with her children, said Grant.

Other family members have young families of their own that they are busy with.

Grant said she has been trying to get respite care but hasn’t been granted any.

“It’s hard,” she said, getting emotional. “This is a big problem here that we have to figure out.”

When her children were in daycare, they could stay until the end of a work day (5 p.m. or 5:30 p.m.)

Now that they are in school, Grant is unable to register them in their school’s after-school program because she said she was told the inclusive spaces in the program are filled.

During the summer months, Grant also has difficulties finding child care spots for her children as well as on holidays and personal development days at school. . . .

 “I’m a business person,” she said. “I could do so well if I just had the ability to work and make things better for me and my kids.”

An interview request with the Cape Breton-Victoria Regional Centre for Education (CBVRCE) about why there aren’t enough accessible childcare afterschool seats for children with autism was not granted.

Spokesperson Heather Calder said the centre follows the provincial Inclusive Education Policy.

“CBVRCE staff strives to ensure every student feels they belong, are safe and welcomed in all aspects of their daily experience,” said Calder.

 “This includes not only in-class but also other areas such as afterschool programming, extra-curricular involvement and student transportation.” . . .

AUTISM NUMBERS

As reported in Autism Nova Scotia’s 2023 report (published in 2024) the number of five-year-olds diagnosed with autism has increased substantially;

In 2000 – one in 2,500 were diagnosed with autism.

In 2023 – one in 31 were diagnosed with autism.

NO SCHOOL DAYS

The discussion about inclusive child care in Sydney was reignited on local social media platforms last month after a parent posted about her experience with the YMCA on Charlotte Street.

Erin Lintaman made a Facebook post after being told her eight-year-old daughter with autism, who doesn’t speak, could attend a day program being offered for Dec. 6, 2024 professional development (PD) day at local schools.

After registering her daughters online, where it said it was inclusive care, the mother of three emailed the contact she had at the YMCA.

“I just wanted to make sure that I had clicked off that she (her daughter with autism) needed

“She confirmed that the girls were registered and that one needed extra supports.”

Lintaman told her daughter with autism she was able to go to the day camp with her seven-year-old sister and was excited to go swimming.

When Lintaman brought her two children to be dropped off, she handed the staff who met them with the bag she packed with diapers and wipes for her daughter with autism.

The staff told Lintaman they don’t have the supports on day programs like these and can’t do things like change diapers.

“They said they don’t change bums on PD days and they definitely don’t have any extra supports for her here, but since you are here they could try her out,” said Lintaman.

“So, I left her there. And I felt bad. I cried when I got in the car.”

A staff member called Lintaman about 45 minutes later asking her to pick up her daughter.

“She said, “You have to come and pick (her) up. This is not a good environment for her here, for today,” Lintaman said.

When Lintaman returned to the YMCA to get her daughter with autism, she met with the contact she emailed and a staff at the facility who greeted her in the morning.

During the meeting, Lintaman said her contact said she was wrong to tell her they had the extra supports that day and the staff she dealt with earlier apologized. Lintaman was told her daughter couldn’t stay.

“When I went up to get (her) she was sitting there quietly with someone and eating fish crackers and having a drink of a juice box,” and I said, Time to go,” said Lintaman.

 “She didn’t get to swim and as we were leaving, she was having a tantrum because I know she wanted to go in the water. The experience was so sad. I felt mostly bad for her.”

The following day, Lintaman went to get her refund from the YMCA and said a staff member said her daughter was being “disruptive” which is why the eight-year-old couldn’t stay.

“She said, well she was causing a bit of a disturbance because she stole a cup from another camper,’ said Lintaman, who is currently doing a master’s degree in counselling.

“But they are very apologetic now, the Y … since I put the post up.”

Lintaman can see her daughter’s disappointment when she isn’t able to participate in programs her peers are in.”

The situation at the YMCA day camp made Lintaman feel “sad” for her daughter and “kind of like hopeless”.

“In their March Break camp, they only accepted her for one day. And in their summer, she was only offered one week of camp out of eight,” she said.

“It just brings to light how my younger daughter could go to eight weeks of camp at the Y in the summer but strictly because of my daughter’s autism, she’s excluded from the same opportunity.”

Sabrina Vatcher, CEO of the YMCA of Cape Breton, said she couldn’t do an interview about inclusive childcare spots in programs they run.

Instead, she provided this statement via email; “At the YMCA of Cape Breton, the safety and well-being of children in our programs is our highest priority. Our values are embedded in creating spaces of belonging and a commitment to inclusive programs. Our goal is to work in partnership with families to ensure supports are in place when needed.

“We provide additional supports such as reduced ratios and additional staffing in our regulated child care programs such as our Early Learning Centres and afterschool programs, as well as our non-regulated recreation day camps. We aim to meet the diverse needs of all the children who want to attend our programs, although we are sometimes limited in our capacity to meet everyone’s needs due to staffing challenges, including challenges related to a shortage of qualified candidates for these positions.

“We are committed to working with families and community partners to support the growing needs of childcare in our community.”

Lintaman’s Facebook post drew a lot of attention, particularly from other parents of children with autism who face the same child-care struggles.

“The bigger picture here is Cape Breton doesn’t have enough supports in place for autistic kids,” Lintaman said. . . .

Kate Campbell, a mother of three with two children (her oldest) on the autism spectrum, was one of them.

Campbell, an early childhood educator, told the Post she has also had difficulties with finding day camp spots where staff understand how to deal with her 10-year-old son with autism.

Since her middle son’s needs were very different from her oldest child’s (who also is on the autism spectrum), Campbell could do the afterschool program with the YMCA at his school.

However, she finds the staff are consistently calling her to come and get him, even when there is supposed to be an allocated support staff to help her son reset when needed. . .

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SOLUTIONS

Lintaman contacted the Cape Breton representative of Inclusion Nova Scotia, who has since met with the YMCA.

Thivjan Tharmaratnam, executive director of Inclusion Nova Scotia, said child care is challenging for many families with children with disabilities.

“This isn’t a Cape Breton issue and this isn’t a YMCA issue, it’s a concern for families across the province and across Canada,” Tharmaratnam said.

“When it comes to being able to access affordable child care or even just child care in general, when you have a child with a disability it’s often difficult.”

Inclusion Nova Scotia works with service providers and their staff to help instigate changes that will provide truly inclusive services. . . .

Tharmartnam believes two of the reasons for the gaps in child related services, like day caps for in-service days, are lack of funding/supports and a lack of trained staff.

Tharmaratnam said there are some misconceptions about children with disabilities and what supports they need.

“It’s often seen as more work. Or often seen as an added on thing to support a child when it doesn’t have to be,” he said.

“In some cases, there does need to be additional supports and there doesn’t seem to be a clear understanding about how to access that … or the funding doesn’t exist.”

There also needs to be a change in beliefs around disability.

“We need to look at it from the holistic point of how do we ensure that any child that wants access to this program is included … there are success stories around Canada and across Nova Scotia around how you can create an inclusive program and be sure that every child that wants to can participate,” Tharmaratnam said.

“But there is still a lot of work to do … At the end of the day, if a child is being told they can’t attend something because of their disability, that’s human rights discrimination.”