Pam O’Keefe’s son was diagnosed with autism at two and a half years old, and the diagnosis came with a few unexpected duties.
“I had no problems getting in to see a pediatrician, or getting the diagnosis,” said O’Keefe. “But I was surprised when one of the first things I had to do after his diagnosis was get a business number from Revenue Canada.”
Although Eastern Health assigns a senior therapist to the family, it is the parents who have to take on the role of an employer to go out and hire an Applied Behavioural Analysis (ABA) home therapist.
The senior therapist will identify the child’s strengths and needs, and then develop an ABA therapy program, but it is the ABA home therapist who will apply this therapy for up to 30 hours a week.
“Autism affects a whole range of families,” said O’Keefe. “There’s no bias there. Not everyone has the skills to conduct interviews, hire or fire the workers.”
Melanie Lynch is an ABA home therapist in St. John’s, who has seen some of these challenges first hand.
“If a parent hires somebody with no background in psychology or something similar, they might not be getting the best care for their child,” said Lynch.
Lynch told The Telegram that to become an ABA home therapist, you simply have to take a three-day course through Eastern Health.
O’Keefe says that although she hasn’t had any problems with her home therapists so far, she doesn’t think the three-day course is sufficient.
“It’s a nice course, it gives your information about autism, and things you may not have known before,” said O’Keefe. “But it’s not intense enough. I wouldn’t have been able to leave after that three-day program, and go in to somebody else’s home and feel confident enough to do my job.”
When asked about the three-day program, Eastern Health told The Telegram that it recommends the ABA therapist have two years of post-secondary education in a psychology related field.
Lynch says she won’t be able to stay working as an ABA home therapist for much longer.
“I love my job. It’s very rewarding,” said Lynch. “I would love to stay in this position for the rest of my life, but I can’t afford it.”
Although the Regional Health Authority provides the funding for the home therapists, the parents are still considered their employer.
“On average, an ABA home therapist in Newfoundland makes less than the national average,” said Lynch. “And since I’m not employed by Eastern Health, I don’t get any benefits.”
Scott Crocker, executive director of the Autism Society in St. John’s says it’s a complaint that he’s heard more than once.
“The pay creates many challenges,” said Crocker. “It causes a high turnover rate with the home therapists, and if there’s anything these kids need, it’s a solid routine.”
O’Keefe told The Telegram that she has hired four home therapists in the past two and a half years.
“My child is pretty good with adjusting to a new worker,” said O’Keefe. “But for some kids with autism, any bit of change at all is challenging.”
“It’s like the old saying, ‘The children with the highest needs are the ones with the least amount of resources,’” said Crocker.
Leah Farrell has seen the gaps in the employment area and has set out to do something about it.
“My son has a really rare syndrome called cri-du-chat syndrome,” said Farrell. “He’s the only one in the province that we know of. There were no support groups for us specifically, so I was in contact with families with children of all diagnosis, cerebral palsy, Down syndrome and autism.”
Farrell says she was shocked with she found out how much responsibility fell on these parents.
“How can you be effective in your role as a supportive parent if you’re tied up by being the employer as well?” asked Farrell.
That’s when Farrell decided that she could help. She set up Home Therapy NL with hopes to fill the gaps in the service.
“We will have a team full of passionate, qualified people who have various backgrounds, whether it be in psychology, teaching or social work,” said Farrell. “They will then be assigned to a family, just like a senior therapist.”
“If something doesn’t work out, or someone calls in sick, we have an amazing pool of therapists that we can send in their place,” said Farrell. “It will really cut down on the amount of lost therapy that tends to happen.”
Farrell told The Telegram that she has been in discussions with Eastern Health about the business.
“We don’t want to be disruptive,” said Farrell. “We want to work within the process, and just make everything easier for these families.”