Mom unhappy with autism therapy

Says extra hours don't mean children getting quality service

Deana Stokes Sullivan dss@thetelegram.com
Published on May 26, 2010
Crystal Bateman sits with her daughter Mackenzie as sons Nathaniel (left) and Noah play at their home recently. The two boys have autism. - Photo by Keith Gosse/The Telegram

A mother of three young children says her family is one of many that has been let down by Newfoundland's health care system.

A native of Carbonear, Crystal Bateman moved to New Brunswick in 2004, where she met her husband and started a family. They now have two boys - one is four and the other will be three in September - and a five-month-old baby girl.

A mother of three young children says her family is one of many that has been let down by Newfoundland's health care system.

A native of Carbonear, Crystal Bateman moved to New Brunswick in 2004, where she met her husband and started a family. They now have two boys - one is four and the other will be three in September - and a five-month-old baby girl.

Both boys were diagnosed with autism before their second birthdays. Bateman said the oldest is pretty talkative, but her younger son is still not saying a word.

The boys were each receiving 15 hours of in-clinic, applied behavioural analysis (ABA) therapy in New Brunswick, but Bateman said she knew 30 to 40 hours a week is recommended for preschoolers with autism.

After doing some research, last year Bateman and her husband decided to sell all their belongings and move back to her home province in August, where the children would receive 30 hours of in-home therapy. They now live in Mount Pearl.

Bateman said she sent referrals from the regional hospital in New Brunswick, where the boys had already been assessed for speech therapy, hoping it would speed up the process in Newfoundland. But despite that, she said she had to fill out a questionnaire from the Janeway hospital and start from scratch, then wait about 14 months.

"So, we're looking at October," she said, "before either one of the boys get into speech therapy."

Bateman said the senior therapist overseeing the boys' ABA therapy isn't qualified to implement speech therapy because she doesn't have training in that area.

The two boys are now getting 30 hours of behavioural therapy each week, but Bateman believes the therapists in St. John's don't have the training and skills needed to provide good-quality therapy.

"We've gone through five to six home therapists for my four-year-old because, in my opinion, they didn't get the training to give them the confidence to do what they needed to do," Bateman said. "They just didn't have the skills and it seemed nobody was helping them."

Out of 30 hours of ABA therapy a week, Bateman figures five to 10 hours involve good therapy and the rest of the time the therapist doesn't know what to do with the boys.

"They don't have enough programs or are not really sure how to implement programs because the supervision is not there," she said. "It's definitely not the lack of hours, it's the quality of the hours."

Bateman said most therapists working with her children have been young women with little experience and training from the senior therapists who supervise them.

"The one really good qualified home therapist I had worked for a few days and she took a better job because she was qualified for the better job," she said.

The senior therapists seem to have too many clients and appear overworked, Bateman said.

"They're so busy they don't know what programs my boys are doing. They have to come in and go through a binder to refresh themselves. So how are they supposed to put any personal input into it or have any real suggestions, if they're not spending any time with my boys?"

Bateman said she was told recently that two new senior therapists have been hired, but doesn't know if that will help her situation. She and her husband are considering moving back to New Brunswick in September, because she now believes the 15 hours of in-clinic therapy there are actually better quality than the 30 hours of in-home therapy her children are getting in this province.

Bateman said she has complained to Eastern Health, which oversees programs for autistic children.

Besides being a mother of two autistic children, Bateman has experience herself in ABA therapy. After her oldest son was diagnosed, Bateman said, she went through extensive training in ABA in New Brunswick and worked with two four-year-old boys with autism.

"They made significant progress and I attribute that to the fact that I got really in-depth training, ongoing supervision from case managers and speech therapists and occupational therapists," Bateman said.

She had 3 1/2 weeks training on-site where she was taught about behaviours and reinforcement. Then, Bateman said, there was hands-on training before the therapists started out with clients and another opportunity to take an autism intervention training program with psychologists, dietitians, behaviouralists and speech language therapists at the University of New Brunswick through its college of extended learning.

When asked whether she could provide therapy for her own children, Bateman said, "I do ABA technically throughout the day, but I wouldn't be able to sit down one on one with my own child, and especially where I have three children."

She said a therapist needs to be subjective and step away from their feelings.

"As a parent, you have an emotional attachment to your sons, so you could react in a different way."

ABA therapy teaches behavioural and life skills.

As for moving back to New Brunswick, Bateman said, "It's almost a 99 per cent done deal. ... We're just not happy. We uprooted our family last year and we moved here, specifically for the boys, and we're no further ahead, so why not? ... We're desperate, time is running out and we might as well just accept that this time has been wasted, move on and go back to what we know works."

dss@thetelegram.com