A recent coroner’s inquest into the starvation and malnutrition death of Florence Girard — a woman with Down syndrome — has laid bare deficiencies in British Columbia’s disability policies.
The coroner’s report comes on the heels of a provincial government review of services for children and youth with disabilities after longstanding complaints about the system.
The shortcomings in provincial disability programs and services jeopardize the wellbeing of those with disabilities and call into question whether BC is living up to Canada’s obligations under an international treaty to protect the rights of persons with disabilities.
Unless the provincial government puts those rights at the forefront of all of its disability policies, persons with disabilities — including children — and their families will continue to be at risk.
While the coroner’s inquest focused on inadequacies in publicly funded services for adults with disabilities that contributed to Ms. Girard’s death, similar problems plague government programs and services for children with disabilities.
Our new report for Kids Brain Health Network, which outlines provincial and territorial disability policies across Canada, along with firsthand accounts from caregivers affected by those policies, reveals that policy shortcomings in BC are negatively impacting children with disabilities and their families.
While BC is ahead of other jurisdictions in some areas of disability policy — including accessibility legislation — our research shows that families encounter significant barriers when trying to access programs and services for their children. This includes a lack of information or communication from the government about what supports are available.
We found that at least 35 per cent of the time, parents did not even know that certain provincial disability programs existed. In some cases, they only learned of supports through other parents.
The system of supports is also complex and difficult to navigate. Parents we surveyed said without help from a professional who knows what services are available and how to apply for them, it’s almost impossible to figure out how to access supports.
One parent likened it to, “floating around in the dark, trying to figure out what’s next.”
The complexities are exacerbated by a lack of co-ordination and collaboration among government ministries — including Children and Family Development, Education and Child Care and Health – that places the burden of navigating services on the shoulders of already overwhelmed families.
When parents do learn of programs and services, they often encounter other hurdles, including lack of supports in their region or long waitlists.
A new report from the province’s Office of the Representative for Children and Youth found that there were over 10,000 children on the waitlist for autism testing, and that in some cases, children were waiting over two years for the assessment.
Funding for programs and services is often inadequate or unevenly distributed, leaving some parents scrambling to pay for costly services for their children out of their own pocket.
These barriers and gaps not only strain families emotionally and financially, they shortchange the children. Without timely access to assessments, therapies and other programs, children with disabilities miss out on developmental and educational supports, hindering their ability to reach their full potential.
This also jeopardizes Canada’s ability to meet its obligations under the United Nations Convention on the Rights of Persons with Disabilities.
Protecting and promoting the rights of persons with disabilities requires our governments to ensure that their disability programs and services are fully funded, with a person by person, and family by family approach, and that an adequate number of highly qualified professionals are trained to deliver those services.
For BC, that means fixing the problems — the barriers and gaps — that parents and disability advocates have identified.
Recent announcements in Budget 2025 allocating additional funding to Children and Youth with Support needs is an important opportunity to reform programs to ensure they adequately uphold the rights of persons with disabilities, so that they can fully participate in society without discrimination.
It is time for BC to transform its disability policies. By centring them around rights, it can become a true leader in Canada.
Photo courtesy of DespositPhotos
