The Ontario Disability Coalition
May 23, 2019
Dear Senator Jim Munson,
As a Canadian I’m writing to you as a passionate change maker and mother to my daughter Ashley who is 14 years old and has a rare genetic syndrome. She requires several assistive devices to participate fully and actively in daily living. She uses a wheelchair, a feeding tube for nutrition, and a communication device to allow her to communicate with family and friends. Supporting and watching her grow has been a joy but also emotionally, physically and financially draining. As we run into endless barrier after barrier it is a constant uphill battle to ensure she has essential health services and necessary assistive devices which improve the quality of her life, reduce her pain, allow her an ordinary life. Sadly, in Ontario and across Canada rehabilitation therapies and access to equipment like wheelchairs is unaffordable to the average Canadian family due to the extraordinary cost.
There is a patch work of rehabilitation service across Canada with ocean size gaps. It is extremely costly to raise a child with a disability the therapies and equipment needed annually cost well over $40,000 a year. To put that in perspective it is like buying a new car every year. I do not know any family that can afford that.
According to Easter Seals Canada
|Disability in Canada: Facts and Figures – Easter Seals CanadaPage 1 of 3 Disability in Canada: Facts and Figures 15% of the world identifies as having a disability According to the World Health Organization, 15% of the world’s population (an estimated 1.1 billioneasterseals.ca|
I am writing to you today to express my concerns with the push for a National Autism Strategy that you’re championing, as this leaves the needs of millions of children, youth and adults with other disabilities across Canada will not be addressed.
The stark reality is that all individuals with disabilities, irrespective of labels, require and are deserving of appropriate therapeutic interventions, access to timely essential health services and assistive devices. No individual should be forced to wait their turn for life-altering therapies and necessary supports while the government limits its focus to only one diagnosis.
The government needs to ensure that the advantages being afforded to children, youth and adults with a diagnosis of autism through a National Autism Strategy, are equally available to children, youth and adults with any other disability such as but not limited to Down Syndrome, Cerebral Palsy, Muscular Dystrophy, Chromosome Abnormalities and many other rare and unique diagnosis. I’m urging you to ensure election platforms advocate for a National Disability Strategy which is inclusive of ALL disabilities rather than focus solely on one diagnosis.
Currently in Ontario families of children with other disabilities feel ignored and forgotten. In Ontario government policies and practices towards individuals with any disability other than autism are devastating and discriminatory.
When you look across Canada it is clear our disability systems are unfair and inefficient clearly in a state needing reform. We do believe in 2019 this discrimination and inefficient systems need to end.
I strongly urge the Canadian Senate and all levels of government to look at Australia as they have created an inclusive National Disability Strategy which does not divide the disability community but instead unites their nation in a non-disabling society.
Australia likewise has a National Disability Insurance Strategy (NDIS) which helps people with disabilities achieve their goals using a lifetime approach and investing with people with disabilities early on to achieve their goals later in life. The NDIS recognizes that everyone needs and goals are different and they provide people with individualized choices and control. Here is a short video prepared by NDIS which will explain this further.
I’d welcome a meeting with you to discuss this in further detail.
In the 2019 federal election, we need campaigns to ensure every child, youth and adult with a disability in Canada is supported and afforded equal opportunities in life. I urge you to advocate and be a champion for a National Disability Strategy where no one will be left behind. The time is now to unite and support the entire disability community to achieve a barrier free Canada.
Co-Founder, Ontario Disability Coalition