MAINTAINING ESSENTIAL SUPPORT IN A LIFE OF ISOLATION
This blog post was first posted on May 05 2020, and updated August 16 2023.
The COVID-19 virus has created a uniquely challenging experience for us all. When Australia went into lockdown, people with disabilities (like me) were forced to alter their lifestyles even further, particularly with how we access one of our most crucial resources – our support workers.
Over the last few months, we have seen news reports of people struggling with solitude, sudden unemployment, loss of financial security and the inability to easily access their usual social outlets. However, as a person with cerebral palsy – I believe this pandemic has allowed the general population to wrestle with many of the experiences that people with disabilities and their loved ones live with each day.
For myself, the most significant adjustment during this period has been how I keep my support workers involved in my life and still get the most out of my NDIS plan. I waited so long to get my NDIS plan in place, and the radical positive shift it created in my life, so I felt destabilised when lockdown took effect. How do you participate in a community that is now in lockdown?
I was also wary of attending my regular physio and hydrotherapy appointments, fearful that I might carry something home that would put my loved ones at risk. As a person with a disability – you hear two clocks ticking. A clock in which you are counting the time in lockdown, with no specific end in sight, as well as your NDIS review deadline. In the first few months of my plan, I had established incredible relationships with both of my support workers and wondered how this crisis would affect them. I knew I would have to become creative with how I used my services.
I swapped my brunches for home cooking sessions. My gym workouts turned into yoga sessions in the backyard. Streaming networks and video chat services kept me entertained each night. Apart from people’s sudden frantic obsession with toilet paper, grocery shopping was the only unchanged thing.
After weeks of avoiding my usual health regimen, my joints were starting to feel tight. Having an open conversation with my family eased my concerns, and with a few safety measures in place, I returned to my physiotherapy and hydrotherapy sessions.
In addition to having a support worker during the week, I also have one I use on the weekend. Ironically, when I connected with her initially, it was an opportunity to see more movies, take more trips to the city, uncover new bars and cafes – do the things that have since become non-essential activities.
During the initial stages of life in isolation, I suspended our sessions, but it felt like a disadvantage to both of us. After a few weeks, I needed to burn up the monotony that was consuming my weekends. After several weeks, I decided to book in with my weekend support worker. I wasn’t even sure how long our session would go, or what we could do. We started with grocery shopping and a few simple errands and then sat in my family’s kitchen and spent the afternoon chatting.
The most surprising thing was that we ended up just chatting for a few hours; it reintroduced a sense of normalcy for me. It brought energy into the house. I switched up what would have typically been an expensive night out, for a night in (with a glass or two of red for myself). The ritual of sitting in my kitchen and spending one-on-one time with a friendly face reminded me of how my parents would spend their free days when my sisters and I were growing up. Instead of brunches in restaurants that required planning and spending, they would sit in their kitchen for hours storytelling over tea, or a board game.
One of the most exciting things I have noticed is how it shifts the atmosphere of a home after weeks of lockdown. While I have an incredibly tight-knit family, we have certainly felt the drain of being isolated from our social networks.
When one of my support workers enters my home, there is this instantaneous energy that is added to the house. There’s someone new to talk to who has been going through the same crisis, and there is an opportunity to exchange stories and share experiences. It rejuvenates your mental health, and it breaks up the monotony of how one day bleeds into the next.
Situations like this have the potential to inspire creative solutions, as both clients and their support workers navigate all the instabilities this virus presents. There is an opportunity to create a continuous flow of income for some of our most essential workers, and a chance to preserve relationships and invent new routines that allow you to feel like you are still connected, while still utilising your NDIS plan.