NDIS guru – Dealing with COVID-19 as an NDIS participant

Siobhan is dealing with COVID-19 as an NDIS participant

Blue Badge Insurance understands that accessing and participating in the NDIS can be confusing at any point in the journey. That’s why we engaged NDIS guru and support coordinator Caroline Daley to write a series of articles answering all kinds of NDIS questions we’ve seen on our Facebook page and elsewhere. Caroline has not only helped develop NDIS policies, she was the first person to self-manage an NDIS plan – for daughter Siobhan.

How is our NDIS family dealing with COVID-19?

My daughter, Siobhan, is 20 and is deemed to be at higher risk than the general public if (when?) she is in contact with COVID-19. This is because she has cerebral palsy (GMFCS-V), and uses a wheelchair, communication device and is fed via a gastrostomy button (PEG). She is unable to move independently or cough deeply.

We have been waiting for some guidance on how to manage the risk associated with needing hands-on support multiple times each day. Unfortunately, this information has not come. Dealing with COVID-19 as an NDIS participant can be very worrying.

So, we are sharing what we have done in the hope that it may help others and that our community can develop a healthy plan together.

What is COVID-19?

I am not an epidemiologist or public health official. I am a mum concerned about my kid.

As an NDIS support coordinator I am concerned about my clients too. Many are also at higher risk than the general public just due to the nature of their disability.

You can read more about who is at higher risk here: https://www.health.gov.au/sites/default/files/documents/2020/03/coronavirus-covid-19-information-for-close-contacts-of-a-confirmed-case_2.pdf

We know that COVID-19 affects your chest and your breathing. It can make you very sick.  Some people (from what I’ve read, about 5%) need to go to the hospital Intensive Care Unit (ICU) so that machines can help them breathe. People are dying.

Where there are not enough machines in ICU to help all of the sick people to breathe, like in Italy, doctors have to choose who they will connect to the machines. We can only hope Australian hospitals will prioritise the elderly and disabled as well as the young and fit.

We need to look after our community just in case what is happening in Italy – prioritising patients with the best chance of survival – begins happening in Australia.

What are the symptoms of COVID-19?

Symptoms of COVID-19 often include:

  • fever
  • coughing
  • sore throat
  • fatigue
  • shortness of breath

We are told only 80% of people with COVID-19 only ever get mild symptoms. These people might think that it is only hayfever or a cold, so continue to go out in public.

Imagine if they cough and get a droplet of COVID-19 on a handrail. Or on their hands that they then put on a light switch… They are leaving the virus behind for someone else to pick up.

How do you catch COVID-19?

There are still a lot of things we do not know about how COVID-19 moves from person to person.

At the moment, we are told that you are more likely to get COVID-19 if:

  • You share the air with someone who has COVID-19 – even if they seem to be well
  • Someone who has COVID-19 sneezes or coughs near you
  • You touch a surface that has COVID-19 on it

The virus can live for a very long time on things like door handles, tables, cardboard, metal, plastic – and your hands. If you get COVID-19 on your hands and put your hands near the entry points of your body (mouth, eyes, nose), then you increase the chance of becoming infected.

What is ‘flatten the curve’?

You may have seen a ‘flattening the curve’ chart trending on social media, with #FlattenTheCurve. It was made famous by Drew Harris, who is a population health analyst at Thomas Jefferson University in Philadelphia, when he shared it on Twitter:

It is important to take notice of this because our health system can only look after so many people at the same time. This is the healthcare system capacity line.

If we do not do anything to stop people from getting sick, the healthcare system will not be able to look after everyone. This is the red curve that says “without protective measures”. The red curve shows a lot of people getting sick all at the same time – more people than the healthcare system can look after. We have seen this in Italy where doctors are having to choose who they would connect to the machines in ICU.

If we start to take responsibility for ourselves and our community, then we can #FlattenTheCurve. Lots of people will still get sick – but it will happen more slowly (like the blue “with protective measures” curve), and the health system will be able to help more of us.

What can we do to #FlattenTheCurve?

Practical information for our community – people who need other people to help them in their homes – is nearly non-existent. Dealing with COVID-19 as an NDIS participant means we need to arm ourselves with knowledge from wherever all manner of reputable sources.

The current advice states that you should:

  • wash your hands frequently
  • stay at least 1.5m away from other people (especially when they sneeze)
  • avoid touching your face, mouth, eyes, nose
  • cough or sneeze into a tissue and then safely bin it.

I live in a large city and have been to shopping centres looking for toilet paper and other essential supplies. I can guarantee you that most of the public is not following this advice.


What is the Personal 1.5m Bubble?

My daughter Siobhan is unable to wash her own hands.

The uncontrollable movements from her type of cerebral palsy mean that she is unable to avoid touching her face. She is often unable to tell when she is about to cough or sneeze. Even if she could, she is unable to grab a tissue to use it.

Crucially, if she is in public, she cannot quickly tell someone that they have invaded her 1.5m bubble and ask them to move. She also cannot move away from them.

As she requires assistance with personal care. This includes toileting, feeding, showering, and dressing. Her 1.5m bubble is invaded multiple times each day.

Siobhan has decided to limit her risk of exposure to COVID-19 by staying home and only using necessary supports. She has done this so that if (when?) she gets COVID-19, there is a hope that the healthcare system will be able to provide the support she needs.

How are Team Daley doing this? – essential supplies

Dealing with COVID-19 as an NDIS participant is a challenge for Siobhan in a number of ways. We have always had extra supplies of soaps, hand sanitisers, gloves, antibacterial spray, and cleaners, toilet paper (and other continence aids), feeding tubes, etc. on hand. Typically enough to last us around six weeks. Historically this is enough to get through a Christmas/New Year shutdown period.

I did an order to boost our supplies in February – once the Great Toilet Paper Shortage of 2020 became apparent – and missed a crucial order of gloves. When I went back online the next day to place the order, they were already in short supply. The delivery still has not arrived, hence we are now using nitrile gloves from the grocery store.

We have no face masks.

The local compounding pharmacy is making hand sanitiser for us and others.

We have around 10 days’ worth of food supplies.

Siobhan has essential medications to last her for the next month.

How are Team Daley doing this? – only essential supports

Siobhan is unable to fully isolate where she only has contact with people who are guaranteed not to have COVID-19.

I do not have access to paid sick leave. Like many people, finances dictate that I need to continue to work. After many years, my body is no longer capable of lifting, etc. to provide 100% of her support needs over an extended period.

I know this is not a unique situation. Many of my clients also do not have access to family/friends who would be able to isolate for an unknown period entirely.

To date there is no publicly available information on how Siobhan can fully protect herself. So, we have realised that in order to keep her properly protected from COVID-19 staff would need to:

  • Enter quarantine for 14 days
  • Live with her 100% of the time for 14 days
  • Live their lives before entering quarantine again

Her team is fantastic, but probably not going to be able to do this due to their family commitments.

How else are we minimising risks?

Some of Siobhan’s team work in other industries (retail, hospitality), which we believe increased their risk of exposure to COVID-19. This type of risk profile has already proven ineffective. Why? The team member we considered to be the lowest risk based on the other work they do has been exposed to a confirmed case of COVID-19.

The team washes their hands as they enter the home. They use gloves before touching Siobhan. And they use paper towels (or face washers when we run out) to dry their hands.

Surfaces like door handles, light switches, tables, benchtops, phones, wheelchair, and communication devices are washed and disinfected a couple of times each day.

The team is trying to follow infection prevention control measures outlined by the World Health Organisation for droplet and contact transmission (see below links). But did I mention we do not have access to masks?

You may also be interested in a training resource that takes about 30 minutes, developed by the Australian Department of Health. It doesn’t go into the scenario where the “patient” is healthy and supports may be unwell. However, we have still found it useful and so might you: take a look here.

Siobhan has a fantastic team that supports her to live her life. We are keeping communication open, working as a team, and ensuring that everyone has the supplies they need – like toilet paper. Our community truly does need to pull together to help get each other through this.

What are your key areas of preparation?

Dealing with COVID-19 as an NDIS participant? Preparing now for what may be months of self-isolation is crucial right now. You need to be stepping up your sanitisation efforts, stocking up on supplies, revisiting your care plan, engaging in open and honest communication with your support team, and ensuring you are as well protected as possible during this crisis.

The time is now to be as forward thinking as possible. It’s looking to be a long road ahead.

Do you have any input for others in this position?

Hopefully this article sheds some light for you. Click here for a check-in on higher risk individuals that also gives some good ideas. Do you have any other insights or information that might be useful to our community? Are you dealing with COVID-19 as an NDIS participant? Leave your comment below or discuss it on the Blue Badge Insurance Facebook page.

About the writer

This article was written by Caroline Daley, a leading NDIS expert. She has held several roles assisting the NDIA, including writing the original NDIS documentation and fact sheets on self-management, becoming a qualified NDIS Assistive Technology mentor, and speaking at dozens of events. Caroline began planHELP upon realising thousands of Australians struggle to effectively create and action their NDIS plans.

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