Earlier this week, PDA TAS Associate Director Tammy Milne, spoke at the TasCOSS (Tasmanian Council of Social Services) Conference. Her talk was around the theme “Adapt – Refect – Thrive”, where she shared her own experiences in accessing the COVID-19 vaccination as a person with disability and just where the system fell flat.
Covid 19 has absolutely shattered our world reality. None of us were prepared for the virus that not only took lives, (currently around 4 and a half million worldwide) but stole our lifestyles and forced us to lockdown, to vaccinate and to learn new skills like social distancing, hand sanitising and checking in to just about everywhere we go to protect the ones we love.
Australia thus far has done exceptionally in adapting to this new lifestyle and containing this virus. Very few of us in Tasmania have been personally effected by death from this insidious disease but we have been affected by systems and procedures that lack access to a cohort of our society.
That cohort is People with Disabilities.
Most of us here today know the marginalisation of people with disabilities in our society. Most of us here deal on a day to day basis in our organisations with people with disabilities. Yet, when COVID hit us in March 2020, No one in government was prepared with real understanding of the intricacies of the life of PWD and how covid would impact our lives and how we could be left behind, with no real planning for us leaving us precariously vulnerable.
In March 2020 I gave evidence at the Royal Commission into abuse and neglect of people with disabilities. My evidence was specific to how, as a person with a disability I was left vulnerable – as were many others who require the assistance of support workers to come into our homes on a daily basis to care for our basic needs. I gave evidence that I felt like my house was a potential COVID hotspot as my support workers and my husband’s aged care support came in and out of our home daily. We could only trust that they were doing the right thing to protect their vulnerable clients.
Reflect on how you would feel if this was you?
Fast forward to the vaccine roll out which started in Tasmania in early March.
The booking system.
How do you think the online booking system has played out for People with disabilities and the wider Tasmanian community with functional literacy rates of 49%? That’s 49% of people who function in the world of reading and writing well enough to navigate our systems. This excludes peoples who are computer literate which is a whole other ball game as we know.
- People with disabilities cannot access vaccines because they cannot use the booking system.
- People who cannot read and write cannot access the vaccines because they cannot access the booking system.
- People without a computer and who are not technologically literate cannot access the booking system.
- People without a phone cannot access the booking system.
Go to your GP you say? Well not all towns and rural regional areas had a roll out of GP’s who were willing to vaccinate their patients.
Can you see the gaps here? Can you see a pattern?
Bureaucracy has a real disconnect it seems with the implementation of systems and the people that use them. The most vulnerable don’t seem to be at the forefront of the thought process in this process.
Speaking from personal experience, I rang the booking line and took the next available appointment for a vaccine which was 100km from my home, a trip I took for both jabs. My daughter had to drive from Hobart to Launceston to get her first jab. We have mobility, we have cars, we have cash for petrol and we can navigate the system – but still it was arduous for us.
Reflect on this and how your clients may be impacted with the same story?
Now I’m no wilting flower when it comes to asking questions and finding out information. Back in March I rang the health department to see when PWD were scheduled to get a vaccine. How would ‘they’, those shadowy bureaucrats that are closeted in offices in tall buildings tasked with serving and protecting, how would ‘they’ know that I belonged to 1B? They didn’t know and I was fobbed off by someone who said the NDIS would be letting me know. So I rang the NDIS of course and was told by the NDIS that they had no jurisdiction in this matter and it was up to the state health department to implement procedures and the circle of buck passing went on and on.
It was only in late-June-early-July that dedicated Disability vaccine clinics were opened in Hobart and Launceston – but not in regional or rural Tasmania.
The messaging to the vulnerable, the real people of Tasmania, the elderly, the disabled has been very sparse, in some cases it’s like we have been totally overlooked in planning for the vaccine rollout – just as we were at beginning off the outbreak with support workers, PPE and isolation and protection.
It is said that, people with disabilities are often good problem solvers, thinking outside the box and creating solutions to problems that may not be apparent to others.
We know our own situations, we know our risks, we know our capacities and we are the best experts on our situations. We need to always be at the forefront of managements and bureaucracy when policy and systems are rolled out! 4.4 million people live with disability in Australia today. That’s a huge amount of adaptability. That’s a huge cohort of our Australian population. We need to be having our voices in the places where policy and systems are rolled out.
PWD are not here to blame and shame government and agencies for things that are not right, we are here to team with and be advisors with government and agencies. We are large stakeholders in our community and our own lives and we need to be listened to and be heard. We are going to have to live with Covid for a long time to come and to thrive we are going to have to work together. So my treaty here is for those at the top, in those shadowy offices, in tall buildings, to talk to, listen and hear PWD.
To adapt and thrive we need to be valued as experts in our own field which is disability and be heard, our lives depend on it!