An Interview with the Our Voices Matter Advisory Council by Natalie Appleyard, February 2022.
This edition of the Catalyst focuses on the themes of public trust and accountability. CPJ’s Natalie Appleyard asked members of the Ontario-based Our Voices Matter advisory council to share their thoughts on what could help build a sense of trust and accountability for people with developmental disabilities in Canada.
CPJ: Can you tell our readers a bit about Our Voices Matter (OVM)?
OVM: Our Voices Matter is a group of people with developmental disabilities who come together to learn about and practice self-advocacy. Members are people who use the services of Christian Horizons, a non-profit, developmental services organization. The Ontario Our Voices Matter advisory council meets monthly to share updates and provide information to the Christian Horizons Board of Directors. Members have opportunities to present at local and regional conferences, conduct research in partnership with staff members, provide input into organizational strategic planning and decisions, write for the Christian Horizons newsletter, and lead training sessions for Christian Horizons staff who support local Our Voices Matter members as advocates. The advisory council is also looking forward to talking to MPPs and other politicians.
CPJ: CPJ envisions a society that reflects God’s call for love, justice, and the flourishing of all creation. What are some important ways disabled and abled people can work together to ensure disabled people are included in this vision?
OVM: The way the Our Voices Matter groups connect to Christian Horizons leadership and staff is an excellent example of this. The board and staff of Christian Horizons work with self-advocates who use Christian Horizons services to inform how and what services are delivered, conduct research (with service users acting as both researchers and participants), and collaborate on advocacy. Self-advocates work with the recruitment team and help to train staff.
Recently, Christian Horizons leadership, employees, and self-advocates worked together to choose a theme for 2022 for the organization: Growing together: Joy on the Journey. Members thought about what was important to them and their hopes and dreams for this year.
They expressed a desire to learn new things, volunteer, get jobs, and a real sense of excitement in anticipation of being able to gather with friends and family again.
CPJ: We know that disabled people are disproportionately impacted by poverty. What can that look like in day-to-day life?
OVM: Most members of our group shared examples of how monthly income from the Ontario Disability Support Program (ODSP) isn’t enough to pay for food, housing, medication, and other medical supplies.
Medications are often not covered by disability supports. Vitamins, certain prescriptions, catheters, feeding tube supplies, etc. are not covered. “When they say they cover everything, they legit don’t cover everything. It upsets me and gets me really, really, frustrated,” shares Elizabeth. Many disabled people end up using food banks.
The “Passport” funding program in Ontario really helps people who receive ODSP. The minimum you can get is $5000 which is very helpful. As one member shared, “That’s how I’m surviving.” If ODSP offered that much, many would be alright. But not everybody qualifies for the Passport program. It is difficult to access and sometimes you really need to fight for it. And you still might not qualify.
Other times people have the money to pay for what they need but there are long delays to actually get the support. For example, a broken wheelchair might take months to repair because of wait times to get approval for the funding. “When my wheelchair was broken, I couldn’t use my Dynavox because my headrest controls it. My Dynavox is a computer that speaks out loud for me, so without it I don’t have a voice. That was very frustrating” shares Ray.
The group answering this question also notes that they are part of the population that do get support through agencies and government funding, and it is still not enough. “We are aware that as a group, even though our situation is difficult, there are tens of thousands of people with disabilities all across Canada who have even less support or no support at all” members share.
Ryan shares that “I actually sometimes get frustrated too, in life. Because I never know what’s going on.”
CPJ: What would you like to see from the federal government that would build a sense of trust for people with disabilities?
OVM: We would trust them more if they followed through with what they say. Unfortunately, as both Elizabeth and Ray feel, “they say things now, and then they don’t do what they say.” Ryan also notes, “I wouldn’t mind if someone would talk to me about it.”
Along with the Canada Disability Inclusion Action Plan, the Canada Disability Benefit income top-up would be a good step towards showing us that they care about people with disabilities.