Local Families Challenged by Lack of Autism Therapists

SARAH BURTON
The Packet
Last updated at 10:37 AM on 08/07/10

Parents of autistic children in this area are having trouble finding the home therapists they need to help their children find ways to communicate and
learn effectively.

It is not necessarily an old problem, but it does have a significant impact on children with autism (or Autism Spectrum Disorders) who are preparing to enter into the public school system, as home therapists teach them social and learning skills that aid them in the school environment.

According to Eastern Health, there are currently six families with vacancies for home therapists in the rural Eastern Health region. Two are from the Clarenville area. In the urban Eastern Health region, there are ten families, with five being new referrals. They note that the numbers are fluid and vary throughout
the region from day to day.

Connie Robertson of Musgravetown has been looking to no avail since January of this year. In the meantime, she has been going through what is known as early intervention or Applied Behavioural Analysis (ABA) therapy with her five year old son, Marcus on her own. He graduated from Kindergarten this month.
Robertson believes the problem lies in low wage being offered to workers by the provincial government, which ranges from $11.87 to $12.50 on average.

“I think the wage is a big issue,” she explained. “These kids are not easy to work with. I mean, I’m honest about my child and about his flaws and strengths. He’s the sweetest thing you could ever look at, but when he’s having a meltdown – look out. A lot of these kids are like that. They’re hard to work with and you have to be very persistent and you have to be a very strong-willed person. But with the wage – whywould you go through a very stressful job like that when you can go to Tim Hortons and make just as much?”

Families can subsidize the government wage out of their own pocket, but that is unfeasible for many in rural areas, she added.

Obtaining therapists with the recommended training is also a challenge, as it is preferred that home therapists have two years of post-secondary education in the field of Psychology or Child Development. The low wage could certainly be a deterrent for graduates repaying their student loans, noted Robertson.

The three-day ABA training is provided free-of-charge by Eastern Health once the worker has been hired.

The nature of these positions in regards to its lack of permanency may also be a factor, as the early intervention program normally ends at the age of six. Children normally receive 30 hours of home therapy a week during their pre-school years.

“Once the child is in kindergarten, you only get 15 hours a week and they get assistance from school thereafter,” said Robertson, adding that there are issues with student assistant allocation within the school system as well.

Trish Williams, Executive Director of the Newfoundland and Labrador Autism Society, says autism is the most common child disability worldwide. There are currently 353 children from kindergarten to Grade 12 in the Eastern School District with a disclosed diagnosis, meaning that the schools have been made
aware of the child’s disability. In the Clarenville area alone, there are 32.

“The rate is one in 110 right now, and that’s coming from the Centre for Disease Control,” explained Willams.
“That’s a national standard. The rate of autism is greater than the rate of all childhood cancers, diabetes, Down syndrome, cerebral palsy, or any other childhood disability. When you lump all
them together there’s more diagnosed with autism. It is the most prevalent childhood disability. Newfoundland is not higher than anywhere else, that’s a worldwide statistic, the one in 110. It’s hard to know where our statistics lie because oftentimes the autism society uses statistics from the Janeway
hospital, but those are diagnosis statistics, so it’s hard to know.”

Williams agrees that an insufficient wage is definitely a factor keeping home therapists from applying for available positions, pointing out that it is a skilled, or professional type of work.

“The complaint I’ve heard a lot out there (the Clarenville region) is that you can make more money working at Reitman’s than you do working as a home therapist,” she said. The Eastern Region Autism Society is also sharing some of the challenges faced by parents of autistic children. Their centre has been struggling
to find a director with the appropriate education and qualifications.

For parents who are finding it difficult to complete early intervention therapy with their children on their own, Robertson suggests that maybe the government should allow funding for respite workers instead. It wouldn’t replace the need for a home therapist, but it could help parents in the meantime.

“There are quite a lot of us who have struggled to get a worker, and of course, we don’t qualify for respite care, like families with children who have ADHD. Sometimes they have a worker to help the parents and the child, but they don’t qualify for that with autism,” she explained.

“It could definitely help with teaching the child different social skills and taking them to different social groups, and they could still have the ABA training if they wanted to do that. But it would be a help and a break for the parent. Some of our kids don’t sleep much and sometimes parents are so exhausted
that maybe a respite worker could sometimes help out with that type of situation.”

Provincial and national autism societies agree that early intervention therapy, delivered around the age of three until they are six years of age, is a key ingredient to success for most children with autism. The universal ABA training is all about breaking down tasks that seem overwhelming to the autistic
child into smaller versions that they can build upon. Children who complete the ABA training often overcome many social and communication barriers before entering school. With enough support throughout their lives, many autistic children are able to function successfully as adults. Some go on to obtain employment
and complete post-secondary education, and some even start up their own businesses.

Trish Williams says it is important to note that despite the wage concerns, Newfoundland and Labrador has been progressive with its delivery of early intervention, in comparison to other provinces.

For instance, while the wages in this province are fully subsidized by government, and the therapy is made available to any autistic child who needs it, families residing in Nova Scotia are randomly selected to receive government funded early intervention therapy.

The reasoning behind this is that there are so many people in need of the service, it is better that everyone have an equal chance of being selected by a computer, than have families on a waitlist. This information comes from the Autism Management Advisory Team report on Lifespan Needs for Persons with
Autism Spectrum Disorder, released in 2010 by Nova Scotia’s Department of Education. It has been dedicated to the memory of three-year-old James Delorey, an autistic child who drowned this year after wandering away from his home.

In Ontario, there are long waitlists for children in need of government subsidized early intervention therapy, and it is delivered on the terms of those who examine them. For instance, if it is thought that a child is not seeing much improvement from early intervention, they can be denied the therapy.

Many parents have resorted to paying for private home therapy on there own, costing $20,000 a year for preschool children. Last weekend in Toronto, parents representing Autism Resolution Ontario held a demonstration at the G20 summit to raise awareness of these issues.

Nationally, autism societies are encouraging governments to fund ABA therapy and similar support that can be carried throughout the child’s lifespan according to the individual’s needs.

08/07/10  

Reproduced from http://www.thepacket.ca/index.cfm?sid=346182&sc=368