By Helen Ries
Can you imagine this?
“It is just a few years from today and there has been a lot of positive changes for persons living with disabilities and their families in Canada.
We have a new Canadian Disabilities Act. Our government has signed the UN Protocol to Safeguard the Rights of Persons with Disabilities. Across the country, there have been sweeping changes to disability benefits so no one is forced into a life of poverty.
The Registered Disability Savings Plan (RDSP) uptake is at an all time high. Individuals are selecting their own supports instead of relying on supports that suit bureaucratic needs and timetables. The annual disability pride parade attracts thousands of visitors to cities across the country every year.
It is a new era for individuals with disabilities and their families.”
This is not a pipe dream, but a list of concrete actionable items – policy wins — that the ‘family arm’ of the disability movement in Canada has been working toward for a very long time. The parents, grandparents, sisters, brothers, cousins, caregivers, friends and neighbours who love and care for someone with a disability.
We, the disability family, have been an afterthought – for governments, service agencies and organizations — for far too long. Our opinions have been sidelined, our emotions trivialized, our needs prescribed and our resources shuttered. But we maintain this vision of a better future for our loved ones with a disability because we know it is achievable.
Being visionary is not new to us. Alone, or sometimes with other families, we work to solve problems for our loved ones with disabilities — beyond the solutions that are often presented to us as the only choice. Disability families have seen beyond the four walls of institutional living. We have taken risks and invested in new ideas; we have created employment opportunities and built homes.
Here’s how we can get to a positive vision of the future.
For a long time, organizations and agencies made decisions for our families based on what they had on offer — but the tides have turned. Many have very little to offer by way of services or resources anyway, so they don’t have permission to tell us what our choices are. We have needs, we will tell them what they are, and if services cannot be offered to meet our needs, we will purchase those services elsewhere or innovate for other solutions. How?
We would like to take control of the public funding allocated for our loved one’s care and make individualized choices based on our loved one’s needs. We will hire the right people for us and build a team around our family member with a disability. The bureaucratic one-size fits all solution no longer holds.
Good intentions and a charitable heart are not longer the only job requirements for those working in disability. The new requirements will include creativity and innovation in your work, delivering a high standard of work with dignity and respect.
Organizations and agencies will measure the outcomes and performance of their employees in tangible ways and report back to us on progress. Organizations and service agencies need to know we are your employers, you are accountable to us and you serve us, and not the other way around.
Poverty is not our baseline.
Because our family member was born with or came into a disability does not mean they deserve to be poor. Social assistance is not a gift; it is an entitlement like Old Age Security or Child Benefits. Disability benefits mean a floor from which family members can build themselves up to a better place.
One day we will find a way to pool our collective billions in assets and resources and we will leverage it. Our financial decisions will shift the economy — markets will watch us.
If you doubt this vision, I want to remind you that persons with disabilities and their families are the most creative and innovative people in our country. We craft, design and adapt daily. We are the ultimate life hackers.
We are fed up and tired but our vision is clear.
Our family members with disabilities will be included, have choices and have full economic citizenship. We, the families, will use our creativity, determination and love to change the culture of living with a disability in Canada.
Helen Ries is a sibling caregiver,
a community activist and an
independent consultant.
She is working to create better
systems to support vulnerable,
excluded and underrepresented
populations. www.helenries.ca
