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Stories: Health Minister announces $3.9 million in childhood disability research
The Honourable Leona Aglukkaq, Canada’s Minister of Health, today announced an investment of $3.9 million in childhood disability research. The funding was awarded through Bright Futures for Kids with Disabilities, a partnership between the Canadian Institutes of Health Research (CIHR) and Bloorview Children’s Hospital Foundation (BCHF).
“This research will help us create a country where children with disabilities have the same opportunities as their peers to lead full, meaningful lives,” said Minister Aglukkaq.
The funding was celebrated at a press conference at Bloorview Kids Rehab.
Dr. Michael Kramer, scientific director of the CIHR Institute of Human Development, Child and Youth Health, said the research would help the seven per cent of Canadian children living with a disability “lead active, full and fulfilling lives.”
Five teams of Canadian scientists received funding over three years to enhance the quality of life and social inclusion of children with disabilities.
One of the teams is led by Dr. Gillian King of Bloorview. It brings together scientists to study the environmental factors that enhance social inclusion for youth who rely on life-support technologies like ventilators, and those who don’t speak.
“Because of physical barriers, stigma and the absence of a voice, these youth have limited opportunities to participate in regular activities that help teens develop skills, interests and friendships,” Dr. King said. Her team will study home, hospital and community environments to determine what features best promote skill development, a sense of belonging and a positive sense of identity.
Paula Hohmann and her son Marshall, 17, a Bloorview client, spoke at the event. Paula said that Marshall, who has cerebral palsy and uses voice technology, is fully integrated in Grade 10 at school “but he feels totally alone and excluded from his friends.”
Dr. Pat McKeever, a co-investigator on Dr. King’s project, said the research reflects an attitudinal shift “beyond repairing children to finding ways to enable children with even the most severe disabilities to enjoy the rights of full citizenship.”
She noted that this population has typically been excluded from research.
Unique aspects of the Bright Futures projects include: developing innovative research tools that are disability-friendly and give voice to children who don’t speak; funding of post-doctoral students; and interdisciplinary teams that go beyond traditional health-care disciplines to include geographers, engineers and artists.
Also funded were teams led by:
Dr. Patricia Minnes of Queen’s University. Her team will help preschoolers with developmental disorders start school successfully.
Dr. Adrienne Perry of York University. Her team will produce a national report card on the health and wellbeing of children with severe developmental disabilities and their families.
Dr. Peter Rosenbaum of McMaster University. His team will study the challenges facing parents of children with neurodevelopmental disabilities, such as cerebral palsy and autism.
Dr. Roberta Woodgate of the University of Manitoba. Her team will help us better understand the experience of First Nations families of children with disabilities.
Dr. Kramer met with staff, clients and families on a tour of Bloorview that highlighted our research and clinical activities.