The following interviews are with two health care workers—one in New South Wales (NSW) and the other in Victoria—who explain the worsening conditions facing disability care patients and residents under the shadow of the COVID-19 pandemic.
Recent research indicates that people with intellectual disabilities are among the most COVID-19 vulnerable sections of the population. Studies from the US, for example, showed that people with developmental disabilities were more than three times as likely to die following a diagnosis of COVID-19 than the general population. The figure was 2.75 times more likely for those with intellectual disabilities.
An investigation in New York State also found that people with intellectual and developmental disabilities had a general mortality rate almost eight times higher than average.
Lisa, who works in a residential facility in NSW, told the World Socialist Web Site that governments should be pursuing a policy aimed at eradicating COVID-19.
Lisa: Millions and millions of lives wouldn’t have been lost unnecessarily if there’d been an eradication policy. Governments are clearly putting profit ahead of everything else by reopening schools and businesses. Although they never had proper lockdowns in the first place, we were lucky and got infections down to zero, but now you have a complete abandonment of all that and people are being placed at risk again.
I’m really concerned about where it goes next because it’s only a matter of time before there is a new and worse variant of the virus. Much of the world has not even had one vaccination and so there is still plenty of opportunity for it to mutate. It’s a very scary situation and the governments are completely culpable.
A lot of our residents are over 50 and many have underlying health issues, such as heart problems, obesity, chronic lung disease and neurological disorders. Although all are vaccinated, if the virus gets into one of our residential homes the residents are at a higher risk of serious breakthrough infections than the general population.
Hospitalisation can be especially difficult for our clients. Some lack the ability to communicate pain verbally, which is a big issue. The hospital system isn’t adequately taking into account or meeting the needs of people with intellectual disabilities.
WSWS : What happens when a resident is hospitalised?
Lisa: In normal times, a staff member would go every day and speak to doctors and spend time with the client. They wouldn’t be there 24 hours a day but would be there every day for significant parts of the day. But that can’t happen in a COVID ward.
Our residents are double-vaxxed but not all residents in group homes are. As of about mid-October it was only about 73 percent who had had their second dose and only 65 percent of workers had had their second dose. Our residents are vulnerable but there are lots of people in residential care who are even more vulnerable.
At the beginning of the vaccine rollout disability care workers and residents were prioritised in phase 1A and anybody with a disability was in 1B. During March we kept thinking “Any day now, any week now.” but nothing happened during March and all of April. Nothing definite about the vaccine was communicated to disability services. It was really deprioritised and they’re still not there.
Our manager gave up waiting for the federal government vaccine rollout process and so he made an independent arrangement with the local district health service, which vaccinated our workers.
WSWS: What’s the situation with staffing?
Lisa: Our shifts are always filled and although there are agency staff an effort is made to get the same people, so they get to know the house, the routines and the clients. Many of our clients are not happy though when the agency staff come in. I have one young woman who just locks herself in her room for the entire time. Occasionally, if someone is sick or on holidays, there might be a morning shift and an afternoon shift covered by agency staff. That means that the young woman might spend the entire day in her room—from seven in the morning until six at night—until the last agency staff leave.
The clients don’t fully understand. Mine are fairly high-functioning and you can explain to some extent why there are restrictions. Others are not so high functioning and I’m not sure what they make of it all.
WSWS: The pandemic is obviously very stressful.
Lisa: Yes. I worry every day that I could be carrying the virus unwittingly into the facility and infecting a lot of people, and worry about taking it home as well.
While everybody is affected by lockdowns it’s especially tough on some of our residents. Routine and access to already limited social networks are crucial to their wellbeing but many are unable to use social media to keep in touch with family and friends. Some have very limited interests and it’s difficult to find ways to keep them positively occupied all that time. Like those in residential aged care, our disability residents have been in lockdown longer than the general community.
Overall though it’s been amazing the way they’ve coped. The agency and residential staff have done a fantastic job at keeping people safe and happy, but it’s been scary, and it’s been hard.
I worked longer hours during lockdown because residents couldn’t go out on day programs and the rosters were changed because we had to stay in one house rather than work over two or three. There’s a lot more cleaning and sanitising required. It also concerns me that people living with disability have had extra costs during COVID—for masks, grocery delivery charges, higher electricity costs due to being housebound, etc—but those on the disability pension were not given the COVID payment supplement. They’re already some of the poorest people in the country. It was very unfair.
WSWS: What needs to be done to protect your residents?
Lisa: We’re taking great care with infection control procedures, restricting unnecessary or unvaccinated visitors to the houses, avoiding high risk settings in the community and monitoring temperature, pulse, and oxygen saturation. Coordinators who move between houses are using rapid antigen tests. There are comprehensive plans in place to protect residents and staff should someone contract the virus. Airflow in the houses hasn’t been discussed though, and it ought to be.
WSWS: What do you think of the government’s role?
Lisa: The government was slammed in the Disability Royal Commission for its appalling roll out of the vaccine and was urged to delay opening up until everybody with a disability had the opportunity to be vaccinated. This was ignored and now our residents are back out in the community. Many are not great with wearing or managing masks, hand hygiene or social distancing. The disability community, like the aged, unvaccinated children, and those with underlying health conditions, are at risk.
All people with a disability should have been vaccinated as a priority long ago. There needs to be a clear timeframe, and the plan and progress needs to be transparent. There should be a dedicated vaccine booking system for people with disabilities. Family members of people with disabilities should also have been prioritised. Greater restrictions should have remained until everyone with increased risk of becoming seriously ill from the virus was fully vaccinated.
WSWS: How have the unions reacted to the situation?
Lisa: I don’t really know what the unions were saying, offering or doing, but whatever it was it didn’t impact on any of us in any way.
WSWS: What’s your response to the “learn to live with the virus” slogan?
Lisa: We’re being lied to that this is inevitable. We don’t have to accept daily deaths and the risk of long COVID with implications we don’t even understand yet. We shouldn’t be giving the virus an ongoing opportunity to mutate into a vaccine resistant strain. Effective, coordinated, global health measures with full economic and social support for individuals and small businesses during and after a full and genuine lockdown could eliminate the virus. It’s criminal that in the interests of profit, elimination strategies are taken off the table.
Michael works in a disability facility in Victoria, where the state Labor government is removing basic health precautions and lifting border controls, despite there being more than 1,000 COVID infections a day.
WSWS: What would happen if the coronavirus infected any of your residents?
Michael: I think some could die. They’ve all been vaccinated, but I think a few would definitely be in serious danger. Some have specialist needs which would be especially challenging in a hospital environment. The hospitals are already under great pressure and already having a difficult time without having people with intellectual disabilities or people with very high needs.
I don’t think the hospital teams would be able to cope. There was an ABC program about Intensive Care Units which reported they’ve had to triple the resources for each patient, including someone who is a COVID navigator, and someone else having to follow who is cleaning up, so it’s a 300 percent increase. If you’re dealing with someone with really difficult and challenging behaviours then you’d probably need four people, so it would be a 400 percent increase.
We have a very good rapport with residents, which is built up over time. But for nurses who are exhausted, traumatised, also having to deal with residents with very challenging behaviour is very difficult, no matter how professional these people are. They’ll have all the written plans and they’ll have experience in lessening the triggers which activate bad behaviour, but at the end of the day there is only so much people can do.
WSWS: What measures have to be put in place to protect your residents from COVID-19, given the high risk of your residents catching the virus.
Michael: Each house has a working problem of a limited number of casuals. I know all the staff very well and they have my back and I have theirs. The manager is probably the best manager in the field so I’m very lucky to be in a house where they’ve managed to build a good rapport with everybody. Everybody is on board, but we can’t be there all the time. We’re short staffed.
WSWS: How would you sum up your experiences of the last 20 months?
Michael: I’m very worried about the public health system because staff are going to be so burnt out and traumatised. [Victorian Labor premier] Daniel Andrews is the one to blame for putting all these different departments together to make a super DHHS [Department of Health and Human Services] which is cumbersome and very hard to manage.
Now they are fast tracking nurses with no experience. Corners will be cut and mistakes will be made, that’s just the natural part of being human, especially when stressed and inexperienced. This is what Daniel Andrews is willing to sacrifice.
What [prime minister] Scott Morrison did was very cynical. A friend of mine who works in quarantine told me that he knew when people arrived from overseas it would no longer be a federal quarantine responsibility, but a state health responsibility. Morrison allocated zero money to build quarantine facilities and let the states deal with it as a health issue. He really screwed the states.
The problem is the overall vaccine rate. So far only four percent of the African population is vaccinated. Let’s say that all the rich countries are vaccinated but the poorer countries aren’t, so when new variants come out, maybe even worse than Delta, we will not be able to counter them. We’ll be back to square one or even worse than that because we’ll have accumulated all this massive public debt. The numbers are going to go up anyway when we open up, which means our systems will be exhausted. Meanwhile, all this attention has diverted us from two of the biggest threats to humanity and that is the exponential spread of nuclear weapons and climate change.
WSWS: What lessons would you draw from the conditions you’ve been describing at your workplace and what’s required?
Michael: Firstly, the service has been privatised, deregulated, so at the end of the day the residents we care for are cash cows. Their safety is of primary concern to the organisation and the safety of the staff secondary.
I’ve worked ridiculously long and illegal hours because of staff shortages. I think where we’re headed, if the virus really rips through the disability sector, the government will have to step in and nationalise, which won’t be such a bad thing.