Governments, communities, and individuals must do better when taking into account the experiences and needs of people with disabilities during emergencies.

That was the messaging shared Tuesday during a panel discussion hosted by Dalhousie University’s MacEachen Institute for Public Policy and Governance.

Titled Come Hell or High Water: Improving Response for People with Disabilities, the online discussion focussed on the unique considerations of people with disabilities in the face of emergencies and evacuations. 

“There are many access and functional needs to consider, particularly relating to communication methods, transportation, sheltering, access to assistive devices, emergency social services, and transition back to the community,” stated a publicity notice for the event. “Post-disaster audits from disasters highlight the need to improve emergency services for persons with disabilities.”

With severe weather incidents on the rise and related emergency evacuations becoming more common, the panelists discussed what can and must be done to better support people with disabilities in emergency situations. 

“Recently, the Atlantic region experienced a major emergency in the form of post-tropical storm Fiona. There was the usual advice given for emergency planning, such as having enough supplies for 72 hours and in some extreme cases people should prepare to evacuate,” panel moderator Kevin Quigley said in his opening remarks.

“But often the experiences and unique needs of people with disabilities are not taken into account. This is not simply a practical and ethical issue, it’s also a legal one.”

 ‘We cannot allow this to happen again’

One issue that garnered attention during the panel discussion was the seriousness of the failure of telecommunications in the aftermath of Fiona that left many with no way to communicate with loved ones or emergency officials. 

On Oct. 13 the provincial government introduced amendments to the Emergency “911” Act to “compel local telecommunications companies to provide reliable service and better communications during an emergency.”

Donalda MacIsaac was the first panelist to address the telecommunications piece.  A health care and social change advocate who serves as a family patient advisor for Dalhousie Family Medicine and other Nova Scotia Health committees, she was left without any form of communication at home with her vulnerable son when her power (and landline) went out for five days following Fiona.

MacIsaac said after having lived through Hurricane Juan, she did all she could to prepare for Fiona.

“The one thing that we weren’t prepared for in Fiona was our telecommunication system going down, leaving tons of people vulnerable, afraid, and without any form of assistance,” MacIssac said. 

“This is something that we have to change. We cannot allow this to happen again. We need to make sure that our structures are accountable for these different things.”

MacIsaac found herself placing her sneakers in front of her door, fearing that if her son was in crisis she’d have to run to the nearest fire station for help. 

“These are situations where it should not be. We should not have an invisible part of our population that nobody recognizes that they’re there,” MacIsaac said. 

“If my roof comes off, I can’t go anywhere. If a car comes up and down my street and asks everybody to evacuate, I can’t evacuate.”

Holding up a photo of her son’s specialty bed, MacIsaac explained that because it can’t be disassembled, she can’t evacuate with it. She said emergency measures must be in place for these kinds of situations, and facilities have to be equipped to meet the needs of the vulnerable populations who go there.

In addition, she said any solution must go beyond creating a vulnerable persons list. She pointed to home care, a service that deals with many vulnerable people. Without knowing who or where home care clients are or the particulars of their individual situations, it’s difficult to help them. That’s why she wants to see the province take an active role.

“Home care is one of the areas where we need to put a bigger focus on when we’re talking about storms and things coming, because people in long-term care facilities is one thing, but when you’re talking about people in their homes, it’s very, very different,” she said. 

“We have to make sure that we’re able to reach these people and we can start different lines by connecting with the medical community, connecting with Nova Scotia Power, connecting with all the people who may have a vulnerable persons list already.”

She believes a “human chain” communication system is also necessary in light of telecommunication infrastructure that “failed big time.” MacIsaac said any such system must be more than volunteer-based. It has to be properly funded and centralized because there are already “too many silos.”

‘We can certainly do a better job of it’

MacIsaac also believes there’s something to be learned from Nova Scotia Power’s critical customer communication program, which keeps track of those who require electricity to operate things like oxygen machines and dialysis. She first heard about it in the aftermath of Hurricane Juan.

“I tell you, when your power’s out and you’re sort of left there and you hear a voice on the other line, not an automated voice, but someone just checking in, seeing how you’re doing, it helps to relieve some of the stress and tension,” MacIsaac said. 

“And so if Nova Scotia Power can do it, we can certainly do a better job of it as well.”

In addition to spreading awareness of that program, MacIsaac encourages people to contact their nearest fire station so that members are aware of them and their needs.

“Fear felt like it just wrapped its arms around me and held me because I didn’t know what to do. I could not communicate with the outside world and I had no way of dealing with that,” MacIsaac said of her experience following Fiona. 

“We have to make sure governments keep these telecommunications agencies accountable, and we don’t have time to do this for the next five years. We need to make sure that we have something in place for our next storm.”

Highest proportion of people with disabilities

Researcher Kaitlynne Lowe was another panelist. Her work focuses on accessibility issues in Canada’s emergency management response to improve the experience of people with disabilities. She recently co-authored an article published in The Conversation about Fiona and the need for more support for people with disabilities in extreme storms. 

“The Atlantic provinces report the highest proportion of people with disabilities living in Canada. The aging population in the region suggests the number of people with disabilities in Atlantic Canada is growing,” the article noted. 

“Emergency preparation raises important practical questions. You need the time and wherewithal to acquire necessary supplies, and the space to store them adequately. This can be challenging for people with disabilities who experience high rates of poverty and unemployment. Social networks may not not be readily available either; people with disabilities are often excluded from many parts of society.”

Lowe shared with the panel details about a research project she’s part of examining ways to improve communication about evacuation and emergency responses to people with disabilities. 

The research included a survey of people with disabilities. Among the issues brought forward by respondents related to emergency response and the possibility of needing to evacuate was transportation. People expressed concern about how they’d get out of their homes, how they’d get to comfort centres, and how they’d access other transportation options. 

If sheltering in place was the only option following an emergency, they worried about access to necessary equipment and supplies like assistive devices and medication. Those without personal support networks or who are isolated have no choice but to rely on someone to intervene, Lowe said. 

In terms of being evacuated to a shelter, concerns raised included how the facility would meet their needs, the facility’s accessibility, and whether it would be equipped with the necessary medical equipment and resources. 

Preparing for the next storm

Lowe said their research also found that methods of communicating emergency information were very important. Phone and television alerts, for example, were highly favoured, while door-to-door communication placed last on the list. 

“We also need to look to improve how people with disabilities are integrated directly in emergency planning and especially in advance in disasters,” Lowe said. 

“We need to be having these conversations on bright, sunny days when things are going well to be prepared for the next storm.”

Lowe also addressed the topic of a vulnerable persons registry. She said while it’s been a frequent topic of conversation in Nova Scotia for many years, the key is to find ways to ensure the information is properly collected, used, managed, and kept up-to-date and accurate. 

In addition to exploring different provincial models — including Nova Scotia Power’s critical customer communication program — she said discussions around these issues must be ongoing and not just “one-off, ad hoc conversations.” 

“Also people with disabilities need to be brought in at the very beginning of developing these policies and programs. It can’t be that a program is created and then you’re asked, ‘How can we make this more accessible to you,’” Lowe said. 

‘Make sure people with disabilities are at the forefront’

“That universal principle of accessibility really needs to try and be embedded from the ground up through everything, and the best way to do that is make sure that people with disabilities are at the forefront of that conversation and that they have a legitimized view within an institutional structure to convey their needs and make decisions.”

The issue of service animals and emergency and warming shelters was also brought up. Lowe said service animals are “an important consideration for all aspects of the emergency planning piece.” 

“A lot of our findings have been that at the very least we need to be engaging people to have various service animal needs and trying to make sure that those are accounted for in how we’re planning for shelter and accommodations for comfort centres,” Lowe said.

Steven Estey, former national coordinator with the Council of Canadians with Disabilities (CCD) and a former human rights officer at Disabled Peoples’ International (DPI) was also a guest panelist. 

Addressing the issue of support animals, he said the tendency is often to think about people who have sensory or physical disabilities when the reality is that a large percentage have a hidden disability. 

“In terms of planning, you’re talking about different kinds of things that have been done, but I think a lot more attention needs to be paid to people who have hidden disabilities because it’s very easy for them to be overlooked,” Estey said. 

“So I’d just like to plug that. If people have thoughts or comments about that I’d be interested to hear them.”

Yvette d’Entremont is a bilingual (English/French) journalist and editor who enjoys covering health, science, research, and education.

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