Dinesh Palipana OAM (born 1984) is an Australian doctor, legal professional and disability advocate. He is the first quadriplegic medical intern in Queensland and the second person with quadriplegia to graduate as a doctor in Australia. Dinesh is also an advocate for medical students with disabilities in Australia, where significant barriers currently exist.
We were lucky enough to have Dr Palipana put together some information about the COVID-19 situation as it relates to people with disabilities. We hope you find it informative and as useful as we have …
Although our society has undergone a lot of social change with the National Disability Insurance Scheme (NDIS), people with disabilities still experience a disadvantage in healthcare(1).
For example, the mortality rate for people with disabilities during the 2011 earthquake and tsunami in Japan was 2.06% compared to 1.03% for the general population(2). That’s double. At the start of the COVID-19 pandemic, people started asking questions about our nation’s preparedness to support people with disabilities during this trying time (3). Many of these questions are justified.
As the United States struggled to control the pandemic, reports began to emerge about ventilator rationing for people with disabilities(4). The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability released a statement of concern regarding the response of the COVID-19 pandemic for people with disability(5).
Medical conditions
Medically, people with certain disabilities can be more vulnerable to complications of the COVID-19 virus. My lungs for example, don’t work as well because of a spinal cord injury. The ability to cough is affected. If a significant infection overwhelmed my respiratory system, the implications could be grim.
We know that certain underlying medical conditions can worsen the outcomes for people with COVID-19. We know that age is a risk. It’s still early days of this virus though, and we are learning more every day.
For this reason, some people with disabilities have chosen play it safe. They’ve self-isolated to avoid complications. This is not far removed from government advice, which could be more specific for certain groups. Yet, isolation comes with logistical challenges.
Logistical challenges
What about the care team? This is what keeps life going for many. Fortunately, some people I know have passionate care teams that have chosen to isolate with their client. This shows the strength of the bonds that we make as we move through life together. Not everyone is as lucky. What if you don’t have access to a comprehensive care team? What if your care team becomes incapacitated because of suspected or proven COVID-19 infections?
That’s without out things like access to groceries and medical supplies. Some medical supplies are in scarce supply, but nations like the United States have some schemes where medical supplies for people with disabilities are prioritised during the pandemic.
Many people still end up in the hospital simply because they can’t access care at home. During the COVID-19 crisis, we need to avoid hospital admissions for non-medical reasons not just to prevent complications to ourselves, but to reduce pressure in an already stressed healthcare system.
In the hospital
If you do end up in hospital, the healthcare system needs to plan for a number of things. This can range from communication methods for people with visual or auditory impairments; to making sure that caregivers can be involved as much as possible. There are even infection control considerations for assistive tools like wheelchairs.
In the event you contract a COVID-19 strict infection current control precautions and management measures may mean isolation in a single room. If this were to happen, there are many care and access implications.
Depending on where you are in life, it’s also useful to do some advanced care planning. Sadly, people sometimes make unfounded judgements about the quality of life in people with disabilities(6). We don’t want life-support withheld simply because of an assumption about a poor quality of life.
It’s easy to highlight the problems. But, what can we do?
Moving forward
Having a plan is a great first step. If you can self-isolate with a team of carergivers to ride this out, that’s not a terrible idea. Apart from protecting yourself, you can help to prevent the spread of COVID-19 in the community.
It’s useful to have a backup plan if your care team becomes incapacitated. Finally, it’s handy to make a comprehensive plan if a hospital presentation becomes necessary. Don’t assume that things like assistive communication will readily be available. Have a plan for everything, including infection control.
Speaking of infection control, that’s a topic which has always been important for people with disabilities. People are in your home and personal space often. Infection control is more critical than ever now. When people are physically assisting you, use appropriate protective equipment. Hand hygiene is important. Wipe down surfaces, because at this point in time we hypothesise that the virus can live on surfaces for a long period of time.
I still cringe at the thought of a previous assistant that used to help me, who’d often stick their fingers in the mouth to pick out food before physically assisting with things. These aren’t always comfortable conversations, but they need to be had.
The most important thing though, is to play our part in preventing the spread of this disease. The world around us is struggling. Reports from medical colleagues in other countries are harrowing. We can’t let things get to that point. Once a flood of patients hits the hospitals, it’s too late. We need to prevent that and stop the virus in its tracks. That’s up to the public. If each of us spreads the message, our community will remain safe. Countries like New Zealand and even Sri Lanka have already been in strict lockdowns.
Look to the future
This is no doubt one of the hardest times our society will go through. But, it’ll also be a time of change. Advocate. Talk to people that can make a change from the top. There are a lot of people trying to create change, but grassroots voices are the best.
Most importantly, we need to look after each other. Support healthcare workers too. My friends are putting themselves at risk to serve the public. The community of people with disability have always been adaptable. They have been resilient. We are strong enough to look after each other. We are strong enough to look after our community. Together, we will come out of this into a better future.
References
- Australian Institute of Health and Welfare. Access to health services by Australians with disability. 2017. (https://www.aihw.gov.au/reports/disability/access-health-services-disability/contents/content, accessed 20 March 2020).
- ibid.
- Centre of Research Excellence in Disability and Health. An important message about people with disability and the COVID-19 response. (https://credh.org.au/news-events/covid-19-and-people-with-disabilities/, accessed 20 March 2020).
- Gravitz L. COVID-19 Daily: Ventilator Rationing, Fast-Turnaround Tests. Medscape Medical News. 28 March 2020. (https://www.medscape.com/viewarticle/927719, accessed 29 March 2020).
- The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Statement of concern: The response to the COVID-19 pandemic for people with disability. 2020.
- Addington-Hall J. Measuring quality of life: Who should measure quality of life? BMJ. 322(7299):1417-1420. 2001.
Words by Dinesh Palipana
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