The Summer Foundation’s Information Service and Lived Experience Advisor, Emma Gee, chats with one of the organisation’s Lived Experience Facilitators, Shanais Nielsen, about the best ways to plan, navigate, stay positive and up-to-date in this COVID world.
Shanais, at the moment I feel very overwhelmed by all the COVID news. Already dealing with the other obstacles of living with a disability, I’m personally feeling fearful about getting this virus. I don’t know about you, but many questions flood my mind. I wonder Shanais if you could share your answers to some of my questions. I think this could be helpful for other people to hear.
How is COVID impacting you today?
Although I am still quite anxious about the number of cases, I am surprisingly feeling a lot more calm about COVID – especially as I go for my booster next week I’m feeling a lot safer than 6 months ago.
What COVID coping strategies are you putting in place?
I am actually trying to make a conscious effort not to look at case numbers as I get quite anxious, but I am just trying to be as safe as possible (vaccinations up-to-date, wearing a mask, checking in everywhere and avoiding hot spots).
As we have been working from home still, I have also been taking regular breaks to avoid being stressed with working from home.
How do you decide if you are experiencing COVID symptoms or symptoms related to your disability?
Luckily the only part of my disability that could feel like COVID is body aches, so I have been making sure that I lay down and stretch out more regularly to avoid my body getting sore, so that I don’t feel anxious about if it is COVID or just my disability.
What personal protective equipment (PPE) and COVID testing tools are you using?
I am still ensuring that my support workers and I wear masks and sanitise regularly. I also have had access to the rapid tests through the Austin hospital, but thankfully haven’t had to use one yet. I have found ‘findarat.com.au’ helpful to locate RATs (Rapid Antigen Tests).
How are you preparing for the scenario that you or a close other contract COVID?
All of my support workers have actually already had COVID, but luckily, I was still in NSW at the time, so I didn’t feel at risk. For me, I honestly feel like it is only a matter of time before I get COVID, as it is everywhere now, but knowing I have/continue to do everything I can to avoid getting it is keeping me quite calm now. My support workers are amazing, and I feel very safe with them as I know they would not come to work if they were at risk of having COVID and they are very transparent with me thankfully.
How do you continue to access the supports and services you need?
I am SO lucky where I live that I have on-site support, so they have been so accommodating with assisting me when someone has been off sick. I became quite short staffed due to COVID, and with my anxiety about getting COVID, I was very hesitant to train more people that I didn’t know, so having on-site support to help out was a HUGE help and gave me peace of mind.
For services like physio, I unfortunately could not attend hydrotherapy, which for me probably took the biggest toll on my mind and body, as I classify hydro as a bit of ‘freedom’. I find that it helps with my mental health and my physical health and strength so much…so that was a real struggle. Thankfully I can do physio with my support workers, and my physio emailed me a routine that I could follow with my support workers, so even though I wasn’t doing this in person with my physio, I was still able to have that routine.
Thank you Shanais for sharing your experience with us.
Here is a list of resources that might be helpful for others:
Summer Foundation COVID Update webpage – Information and links about COVID-19 for people with a disability and close others.
Reasonable & Necessary Podcast Series – Podcast series that explores topics like living with COVID and preparation tips with our very own Dr George Taleporos.
NDIS – Rapid Antigen Test Information – Information on how to claim rapid antigen tests through your NDIS:
Preparation Tools – Making sure you have a ‘hospital passport’ (COVID companion) with you when going to hospital is very important. Tools like these are vital in a time with COVID-19 because you might not be able to take a support person into hospital with you:
Nobody left Behind – COVID Hospital Toolkit
Department of Health – COVID-19 Companion
Admission to Discharge (A2D) Together – The A2D Together Folder