Quebecers with disabilities want to be included in Bill 15 decision-making

Quebecers with disabilities say the province’s health-care reform – Bill 15 – could lead to even more barriers accessing services.

“There’s no point if we don’t have a voice. Our voice is the one that needs to be ministered to,” said John Cody, a person with a neurological disorder living in Montreal.

The patients with disabilities and neurodiversity conditions want to be included in the decision-making process regarding the proposed health reform.

“If disabled folks, hard of hearing, deaf, small D, big D, people with mobility issues are not heard, there’s no point in any of these bills, there’s no point in any reform,” added Cody.

They held a news briefing Tuesday morning alongside patients’ rights advocates at the Lethbridge-Layton-Mackay Rehabilitation Centre on Sherbrooke Street.

“We want to shed light on the day-to-day challenges we encounter and how they impact our health and well-being. These include but are not limited to: access to care, financial support, social services and support, education, proper housing, transportation, employment, etc.,” they said in a news release.

“We face many struggles navigating life as persons who are blind, persons who are deaf, persons who have lost their voices to illness/injury, persons who are in wheelchairs, persons with neurodiversity conditions, and some of us have all of the above and many more issues, and some of us provide care to persons with these health issues, even though we may have health challenges ourselves.”

“We need to bring as many diverse people to the table with different levels of ability so that we all have a voice and people with disabilities are being muted,” said Sandra Molloy, a person with mobility issues.

“The biggest concern, number one, is inclusivity in that we, our needs, are not put into all one basket and looked at in a generic sense,” explained Marc Baillargeon, a person who is legally blind. 

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Introduced in March, Bill 15 aims to create Santé Québec, which would be responsible for the day-to-day operations of the health network.

Quebec Health Minister Christian Dubé says a more organized structure at the top will lead to reduced wait times in emergency rooms and surgeries and improve the overall patient experience.

“They haven’t really been in consultation, although they say they do, but they haven’t been in consultation with the right people,” said Joanne Charron, president of the Lethbridge-Layton-Mackay Rehabilitation Centre (LLMRC) Users’ Committee. “These legislators need to listen to their patients and their users because bills on paper sometimes look great, but in reality they just don’t work because this community is so vulnerable, they do not have a voice.”

In a written response, Quebec’s health ministry tells CityNews that the minister has listened to several groups since the bill was tabled. Adding that any group has the opportunity to write a brief and submit it to the commission studying the bill. As well, they mentioned that they have made modifications to Bill 15 based on feedback they have listened to and that the objective of the bill is to better take into account the needs of all users of the network and to improve access.

In October, six former Quebec premiers wrote an open letter voicing their concerns over Bill 15. “Merging hospital centres and university institutes into a newly created Crown corporation will have a negative impact on these institutions, which play an essential role in Quebec society,” they wrote.

Quebecers with disabilities say they want a voice and be included in Bill 15.

“I just think that we need less bureaucracy and we need at least 50% more outreach into the community. Bill 15 takes care of the government, in my opinion. There are not enough people or users of services represented and it’s like democracy without representation, it doesn’t work,” emphasized Cody.