Emergency tools for the disabled

Research has found many people living with a disability feel unsupported and unprepared to face a crisis – but vital new tools have been created to help.

Associate Professor Yvonne Learmonth from Murdoch University’s School of Allied Health, who led the research, said crisis planning is crucial for everyone, but individuals living with a disability or a chronic health condition face extra challenges.

“People with disabilities are disproportionally at risk for short and long-term consequences when disasters such as fires, floods or pandemics hit,” Associate Professor Learmonth said.

“Emergencies can disrupt access to critical healthcare services and treatments. Without a plan, these disruptions may impact safety, health behaviours and outcomes, increase stress, and result in difficulty managing daily needs.

“Our recent study, funded by MS Australia, focused on the impact of crisis events in persons with multiple sclerosis (MS). Our findings led us to publish six articles and submit information to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.

“Only 17.4% of people with MS that we surveyed had a crisis plan that met their needs.

“We quickly understood that there was a need for greater resources to help people with MS to improve their individual preparedness for crises and to have assistance to do so, and that this would also benefit others living with a disability.”

The research involved survey data, a series of workshops with the MS community and – in collaboration with Australian Red Cross and nurses at MSWA and MS Plus – testing the feasibility of a crisis toolkit for people with a disability or a chronic health condition.

As a result, a new interactive Crisis Toolkit has now been developed and released, consisting of Australian Red Cross RediPlan and resources specifically designed to assist people living with a disability or a chronic health condition in the areas of preparedness, evacuation, heatwave and isolation, in various crises situations.

Initial evaluations have shown that use of the Crisis Toolkit made individuals feel more resilient, knowledgeable about emergency response, and better equipped to maintain contact with their healthcare providers.

Ms Jenni Vanyai, who lives with MS, said the plan does a really good job of asking people to reflect on their own wellbeing and of considering barriers they may experience.

“It gets down to the nitty gritty of things like, are you able to manage your daily routine without assistance or do you require the support of some medical equipment, or do you require the support of a caregiver or multiple caregivers,” Ms Vanyai said.

“Don’t underestimate how much peace of mind it might bring you to complete it and have it done.

“And I’d say, don’t look at the plan and think, oh, it’s overwhelming, there’s too much there to do, because you might be tempted to put it aside and do it another day. But I think the key is just start.”

MS Australia Deputy Head of Research Dr Tennille Luker said MS Australia sees great value in the new resource and will be encouraging people to access the tools and put the planning into place.

“With summer fast approaching, it’s more important than ever to talk about crisis planning,” Dr Luker said.

“The Crisis Toolkit will improve outcomes for people living with MS when disaster strikes, and we encourage people with MS or other chronic health conditions to find out more and to create a plan as soon as they can.”

“Our podcast The Raw Nerve, available on the MS Australia website, has dedicated an episode to the Crisis Toolkit, why to use it and how to use it.”

The Crisis Toolkit and crisis preparation information is available at https://www.msaustralia.org.au/crisistoolkit

This study was the first to assess the needs for crisis planning in a large sample of people with MS in Australia.

The full published research, Crisis preparation for people with multiple sclerosis in Australia: A cross-sectional survey of needs is published in ScienceDirect.