It’s just a few years from today and there have been a lot of positive changes for persons living with disabilities and their families in Canada.
We have a new Canadians With Disabilities Act. Our government has signed the UN Convention on 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’s a new era for individuals with disabilities and their families.
This isn’t a pipe dream. It’s 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. That family arm is made up of 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’s 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’ve taken risks and invested in new ideas; we’ve 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 can’t be offered to meet our needs, we’ll purchase those services elsewhere or innovate for other solutions.
We’d 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’ll 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 no longer the only job requirements for those working in disability. The new requirements will include creativity and innovation in your work, and 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’re their employers; they are accountable to us and they 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 doesn’t mean they deserve to be poor. Social assistance is not a gift, it’s 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’ll find a way to pool our collective billions in assets and resources and we’ll 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’re the ultimate life hackers.
We’re 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’s working to create better systems to support vulnerable, excluded and under-represented populations.