Measures introduced at the start of the pandemic to reduce the spread of COVID-19 made parts of society more accessible for people in Australia. But as we emerge, theres concern that accessibility could be taken away again. Carla Cram lives with EDS and ME/CFS
At the start of the coronavirus pandemic, the lives of billions of people across the world changed dramatically.
Lockdowns forced us to stay at home for extended periods of time, and events and appointments traditionally held in-person moved online.
While the sudden change was a shock to many, the move brought an element of accessibility into the lives of people with disability and chronic illnesses like never before.
Telehealth appointments became the norm, and students and workers traded campuses and offices for their homes, allowing those with mobility concerns to expend less energy and money moving around.
But as Australia emerges from the pandemic, theres still some uncertainty around the future of many of these measures, and concern the increased accessibility could be taken away again.
For Jade Barclay – a Sydneysider who lives with a raft of conditions that affect her mobility such as Ehlers-Danlos syndrome (EDS), postural orthostatic tachycardia syndrome, and spinal fluid leaks – the pivot to online opened up her world.
Telehealth has been an absolute godsend, she said. If telehealth is not available, it messes up my life for three to four days if I need to physically go face-to-face to get a piece of paper that is a referral or prescription renewal that’s going to be emailed anyway.
If I can just do a telehealth for 20 minutes on the phone or video, I don’t have to have four days of preparing and recovering from the commute to the doctor’s office.
Ms Barclay said the pandemic pivot also helped her become more connected with others and increased her ability to participate in the development of her career.
I’ve been able to be on research panels and do things I wouldn’t have been able to do before because of the travel requirements, but because those committees have been on Zoom, have been able to do them. I’ve also been able to go to conferences all over the world.
Last year, Ms Barclay was able to present at a conference based overseas from Australia. But this year, a change in rules meant she wasnt able to.
Shes also worried about having to use public transport a lot again, as the last time she travelled on a bus, she dislocated a hip.
I had my walking stick. I had everything. But I didn’t demand to sit down and I really should have. All the bus did was stop, she said.
Ms Barclay said shes extremely worried about what a potential blanket return to life as it was prior to the pandemic would mean for her.
I am going to fight to make sure that I can keep that [accessibility] going. I didn’t realise how much recovery time and how much of a detriment it was to be forced to go face-to-face for things that don’t actually need it.
Remote work and remote uni works so much better for me.
Carla Cram, who lives with EDS and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is also worried about a wider return to pre-pandemic life.
Ms Cram lives in Winchelsea in regional Victoria and also has children who live with disabilities.
I have been able to take part in AGMs for organisations that I’m a member of and community groups. I’ve also been able to access more online training related to my children’s disabilities and also access telehealth services for a large range of specialists, she said.
Without this, we would have not been able to access these services at all. For my children, being able to access a lot of specialists and do online training rather than attend in person has meant a lot less load on the kids and parents.
If online access to groups and things was to be removed I just won’t be able to access things but I know a lot of people that maybe don’t have a disability find it frustrating.
Anne Wilson, CEO of Emerge Australia – an advocacy group for people with ME/CFS said its crucial as Australia reopens nobody throws the baby out with the bathwater at such a critical junction.
As things slowly change, it doesn’t mean we should automatically turn off what has been created, which for many, has provided more freedom and greater opportunity to participate in society, she said.
Many ME/CFS sufferers are bedridden or homebound, and symptoms such as extreme fatigue that does not go away with rest, brain fog, and dizziness are very similar to those experienced by people who have developed long COVID.
Ms Wilson said many people who develop long COVID may slip into a state that progresses into ME/CFS or something similar, and will have the world around them become less accessible.
So we need to ensure that governments and decision-makers fully understand the needs of this very unseen target group of patients and takes them into consideration, she said.
In a statement, the federal Department of Health said ongoing Medicare telehealth arrangements were being considered by the government.
The Department of Health continues to work with key stakeholders and experts on options for consideration by the Government. The current telehealth items will continue until 31 December 2021, and an announcement about what will follow will be made before the end of the year, the statement said.
Though the funding of telehealth through Medicare is a decision for the government, “the appropriateness and availability of telehealth for particular patients is a choice made by health professionals and the practices they work for”, the department added.
A spokesperson for the Department of Education, Skills and Employment said decisions around whether online school learning continues to be offered were a matter for individual state government and education authorities.
Higher education institutions are responsible for determining their own delivery arrangements, provided they comply with the requirements under the Higher Education Standards Framework, they added.
While acknowledging many people are eager to return to their pre-pandemic lives, Ms Barclay said the way things used to be was not working perfectly for everyone.
Everyone’s like, let’s get back to normal. It’s like you want to get back to your former version of comfortable as if it is the gold standard, and it is not. It was tin standard at best, she said.
When everybody goes through something together, whether its a hurricane or a pandemic, we need to learn from the experience, learn from what has worked and learn from what didn’t work.
I want our society to actually learn from what we’ve gone through and keep the flexibility and choice.