Autism services 'aren't adequate'
Wait-lists long, families often have to go south for early intervention
Shane Magee
Northern News Services
Friday, April 10, 2015
SOMBA K'E/YELLOWKNIFE
The territory is not providing sufficient early intervention service for pre-school children with autism says the president of the NWT Autism Society.
Conlan McKee, 17, left, poses for a photo with his mother Denise McKee who has argued that more support is needed for autism services in the territory. - photo courtesy of Denise McKee
Society launches survival kit for first responders
The NWT Autism Society is launching what it calls an autism survival kit for parents and first responders.
The kit, developed over the past year, holds information like physical descriptions and a photo that can be provided to emergency crews should a child wander away from their caregiver or get lost.
The parent fills in information about their child such as whether the child will respond if their name is called or how they may react to being touched.
"There have been cases where - in other provinces - where they've been within 100 feet from the person who hasn't responded to them," said Denise McKee, president of the society.
The kit will lay out likely locations a child might wander to and also provides a description of autism.
The kits are free and the society will help parents fill them out.
The society is also looking to begin a mentoring program. That could see a parent with a child newly diagnosed paired up with a parent of an older child so knowledge can be shared.
"Often times it becomes quite isolating when a diagnosis is given," McKee said.
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"There aren't adequate services in the territory," Denise McKee told Yellowknifer ahead of Autism Awareness Day last Thursday.
She's had experience with the resources offered not only as executive director of the NWT Disabilities Council but because her 17-year-old son Conlan McKee has autism.
There's no cure for autism spectrum disorder (ASD), a developmental disability that affects one in 68 children, according to the U.S. Centers for Disease Control and Prevention.
It can cause significant social, communication and behaviour challenges such as not responding to their name, a robotic speaking style or not speaking at all by 16 months of age.
However, early intervention therapy for children between birth and three years of age has been shown to be effective in helping reduce those challenges later in life, said McKee.
"Children sit on wait-lists without early intervention because the dollars are not assigned or the funding has not been made available sometimes for years and then they're in the school system not having the early intervention," she said.
Without access to specialized support services, she said children won't develop the skills they need for life.
"Every time you put in the dollars earlier, you save on the other end. That's what people have to understand," she said.
Health Minister Glen Abernethy declined an interview on the subject.
Kim Riles, director of territorial health services with the Department of Health and Social Services, said the wait-list times for early intervention services are about four months for pre-school children and about a year-and-a-half for school-aged children.
The GNWT offers assessment and screening services for children showing signs of a developmental delay, Riles said. Signs can include avoiding eye contact, failing to develop language, strongly resisting changes in routine or engaging in limited imaginative play, according to Health Canada.
A child development team at the Stanton Territorial Hospital has been in place since the early 1990s and deals with issues including autism. The team includes a pediatrician, speech-language pathologist, audiologist, occupational therapist, physiotherapist and child development team co-ordinator.
The GNWT has a relationship with the Glenrose Rehabilitation Hospital in Edmonton, which has an autism clinic where children are sent for early intervention services and testing.
McKee believes too many families have to go south to Alberta seeking early intervention and thinks more resources should be in place in the territory.
Riles said the territory just doesn't have the capacity or the population mass to support the specialized positions that would entail. The department provides funding to the NWT Disabilities Council and Yellowknife Association of Community Living which can then design programs to meet community needs.
The council provides early intervention for children between birth and school for those with developmental delays, including autism.
Asked if she thinks the autism services are sufficient in the territory, Riles said there have been improvements.
"I think that we've made great strides in improving access to rehab services and other services, we've expanded services such as Telespeech to communities across the territory ... Rehab really is a key to providing good support to people with autism," Riles said.
Telespeech is video conferencing technology to connect medical professionals in one community to patients in another community.
Mira Hall has also experienced the system in the North after her child was suspected of having autism.
Her son was on a waiting list for about a year, she said, and was referred to Glenrose Rehabilitation Hospital where tests revealed he doesn't have autism.
While she said the wait time "is kind of a pain," she heard from parents in other provinces that the wait time is reasonable.
Hall said while there's not a lot of local resources, "we do the best that we can."
