We all have stories to share about when the medical system has let us down. But people with disabilities have more than the average person.
I blame decades of policy failings.
I blame the media for its negative representation of people with disabilities.
I also blame the medical schools. Doctors don’t learn about discrimination and human rights in most medical degrees. They learn about “the burden of disability” and how to “eradicate disease”.
Too many doctors decide that a disabled person is “Not for Resuscitation” based on their ablest assumptions about the quality of our lives.
The lack of awareness of our human rights permeates throughout the health sector and recent hearings by the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability have shed light on the human cost.
Health sector responses have been a life-and-death matter for people with disabilities for a very long time. Throw in a global pandemic and reforms to health sector policy and practice have never been more urgent.
Coronavirus threatens all of our lives. At the same time, we know that some people are at greater risk than others. People with disabilities who have high and complex support needs are in serious danger.
People like me face a triple threat.
- We are likely to die if we are infected. Our bodies are already weak. I throw a party when I survive a common cold.
- We are more likely to become infected. Relying on workers to come into our homes each day to keep us alive puts us in very close personal contact with people who may be carrying the virus.
- The health system is poorly equipped to manage our health and disability needs if we become sick. People who don’t know us well, who don’t understand our needs are more likely to unintentionally kill us when they are responsible for our care. I’m not being dramatic, there are many examples of this happening, some of which have been documented by the Royal Commission and in various government inquiries.
The Australian Government released the Management and Operational Plan for COVID-19 for People with Disability last Friday. This is the plan to make sure people with disabilities get the health care we need to keep safe and well during this pandemic.
It is a living document that will be revised and improved upon as we learn more about what we need to do to support people with disabilities through this pandemic.
I am a member of the advisory committee – if there is something that you want to see in this document, please reach out. There is a lot I don’t know about what people need.
Like all policy, implementation is key. Failings in implementation will cost lives. Without effective implementation, the plan will be as worthwhile as toilet paper – or even less so considering how valuable toilet paper is these days.
So when I was watching the news yesterday and the Health Minister was giving a press conference, I felt a bit nervous. He was announcing the arrival of 60 million masks ready for deployment to doctors, nurses, GPs, aged care workers, and allied healthcare workers, there was no mention of disability workers despite this commitment in the Minister’s plan.
I took a deep breath.
We have a lot more work to do.
The Management and Operational Plan for People with Disability (including an Easy read version) from the Department of Health
Download the Plain English version of Dr George’s article here (docx), or read it below.
Disability, health and the coronavirus: Why action is urgently needed
by Dr George Taleporos
Lots of people with disability have their own stories about how they have been let down by the health system.
People with disability have been asking for changes to the health system for a long time.
But we haven’t made much progress.
I blame a couple of things.
I blame the media for the negative way it talks about disability.
I blame medical schools for the way they train doctors to think negatively about disability.
Too many doctors think our lives are not worth living.
This is important all the time. But it is particularly important at the moment because of the spread of the coronavirus.
People with disability like me are more at risk from the virus. There are three reasons for that:
- We are more likely to die if we get infected because of our disability and health conditions.
- We have to let support workers into our houses every day to support us. We are in close contact with people who might be infected.
- The health system is not well equipped to help us if we get sick.
That’s why people with disability and their families are so worried.
Last Friday the Australian government released a national plan called “Management and Operational Plan for COVID-19 for People with Disability.” It is the plan to make sure people with disability can get the health care they need to stay safe and well during this pandemic.
It is a living document which will keep getting updated.
I was part of the advisory group that helped draft the plan. You can contact me if you want to know more.
Like all plans, everything depends on how it is put into action. We will be watching that closely.
And we know we have much more to do.