Girl finds her voice
June 30, 2010
AHS program helps 12-year-old speak for first time
Tobynn Geurts spoke for the first time in January.
She’s 12 years old and has a severe form of cerebral palsy. For most of her life, she could only communicate by nodding.
“It was very frustrating because people didn’t either understand (me) or take the time to figure out what I needed,” Tobynn says through a speech-generating communication device she learned to use through an Alberta Health Services program.
Augmentative Communication and Educational Technology Services (ACETS, pronounced ‘assets’) works with more than 150 children and adults in southern Alberta who have severe communication difficulties that prevent them from speaking, handwriting or signing. These difficulties are often caused by cerebral palsy, Down syndrome, autism, muscular dystrophy, multiple sclerosis, ALS (Lou Gehrig’s disease), Parkinson’s disease, stroke or brain injury.
“Our patients have the same need and desire to communicate as anybody else,” says ACETS co-ordinator Kim Beckers. “They have simply lost, or never had, the verbal or motor skills necessary to effectively convey their thoughts. Imagine not being able to tell a loved one: ‘I’m in discomfort,’ or ‘I’m hungry,’ or ‘I want this.’
“ACETS helps patients, their families, friends, teachers and colleagues to overcome communication barriers, and give people who cannot speak the chance to be heard and understood. I cannot overstate the impact this has on people’s lives and relationships.”
Tobynn uses a switch at her left elbow to scroll through words and phrases spoken by a computer-generated voice. Speech-language pathologists, occupational therapists and a technician at ACETS work with Tobynn, her family and staff at Emily Follensbee School in southwest Calgary to ensure she can talk and act like any other pre-teen.
“She comes to school and she wants to tell her friends about the party she went to on the weekend, or that Justin Bieber is her favourite singer,” says her teacher Algis Grajauskas. “We always knew Tobynn was a very intelligent girl. Now with her voice, she proves every day she’s even smarter than we thought.”
Her father Andre adds: “It’s made Tobynn’s life a lot better. She surprises us all the time with what she asks us about and what she knows.”
Speech generating communication devices can cost as much as $10,000 with funding mostly covered by Alberta Aids to Daily Living, a program within the Government of Alberta’s Seniors and Community Supports ministry. Families pay a 25 per cent cost-share portion up to a maximum of $500. Families that are lower income do not share in the cost of the devices.
“I am pleased that the partnership between Alberta Health Services and my Ministry’s Alberta Aids to Daily Living program has made such a difference in the lives of our clients and especially in enhancing their relationships with their families, caregivers and teachers,” says Mary Anne Jablonski, Minister of Seniors and Community Supports.
ACETS does not assume a primary therapy role but relies on collaboration and partnerships with therapists, family members and educators. These partnerships earned ACETS the Canadian Association of Speech Language Pathologists and Audiologists (CASLPA) Award of Excellence for Interprofessional Collaboration last month.
Celebrating its 10th anniversary this year, ACETS was established with community support from the Alberta Children’s Hospital Foundation and is based at Alberta Children’s Hospital.
The Edmonton-based I CAN program performs a similar service for Albertans in the northern half of the province.
