Written by Tammy Milne – PDA TAS Associate Director
My name is Tammy Milne. I had covid and I survived. For over 2 years now I have avoided the insidious virus like the plague! I’ve taken all the precautions. Triple vaccinated, wear a mask, hand sanitise, limit my contact with the outside world and limit who comes into my home. I have made my support workers all take Rapid Antigen Tests before commencing a shift and I have let go two workers who would not get vaccinated. The longest I spent in self isolation was 49 days. Our state government took protections very seriously and shut our borders early and for an extended period. But then the border opened on the 15th December and a tidal wave of covid washed over our little island state.
For almost two years our little state was covid -19 free and then the flood gates opened. Cases swept through towns, schools, business and homes. After being locked up at home and missing my daughter so much, she is away at University in Hobart, I booked a support worker, we packed the car and the dogs and headed to an AirBnb in Hobart. For the first five days we did outside activities to lessen the risk. We took walks, ate ice-cream on the waterfront and enjoyed the beautiful historic Battery Point, marvelling at the old buildings.
But all our safety protocols were only as good as the weakest link and unfortunately my daughter was mine. After 6 days in Hobart she tested positive to covid-19 which meant I was a close contact. By this stage I had sent my support worker home with the dogs and was relying totally on my daughter and casual support worker for support in Hobart. I had also moved to an inner city hotel to be closer to my daughter.
On the Wednesday we went out for dinner, she then took me back to the hotel and got me settled for the night and left. At 11.30pm she FaceTimed me and said that she was positive. What does this mean for us? I, at this stage was a close contact and so had to go into quarantine and rely on my casual support worker whilst my daughter was out with covid. Things started falling apart rapidly from this time on. My support worker said they did not feel comfortable supporting me as I was a close contact and they felt at risk. I assured them that with PPE, public health said that they were safer working with me than going out to the shops. I rang their union to get advice on where they stood. The Health and Public Sector Union stated that they follow and support health protocols and encourage their members to follow all mandates in their workplaces. Still they (my support worker) declined to work with me.
I was stuck! I was stuck in a hotel and couldn’t get room service into my room as I was in quarantine. They could leave food outside my room but, because of my disability, I could not physically lift the food from the floor outside. I was also unable to shower. I was stuck and stinky and hungry.
One of the management team in the hotel broke hotel protocol and brought me up some tea and toast. Her rational was, ”I have had covid only two weeks ago so I’m immune and just couldn’t leave you up here like this. It is just not moral.”
So this dire situation began to turn around when I rang my state based dedicated disability covid helpline. This happened around 1pm. I told them of the situation and thankfully the seriousness of this predicament was understood and they acted with understanding and empathy.
I received multiple phone calls throughout the day as they worked out a plan for me. Many solutions were mooted; go to hospital for the night, go to a covid care facility or go home. I wanted to go home. And so at 7.30pm a nurse from the covid hotel was dispatched in full PPE to shower me, pack my bags and hunt down some food for me as I hadn’t eaten since the tea and toast earlier in the afternoon. At 9.30pm a patient transport taxi with two lovely young volunteer ambulance folks with the St Johns Ambulance arrived, again in full PPE, to collect me and start my long journey home. I arrived home at 2am Friday morning. My support worker Michelle was in the house already to take over my care. It was deemed she was not a close contact but, as a casual contact, was given permission by the health dept to provide care for me for the next 7 days of isolation. I fell into bed and slept.
I woke the next morning feeling a bit rough and did a Rapid Antigen Test. I went from being a close contact to a positive case just like that!
After registering my positive Rapid Antigen Test, I was called by the state health department Covid@home nurse and triaged. Now going back a few months I had been working with a respiratory physiotherapist and she was concerned that if I caught covid the situation could be dire – as, like many wheelchair users, I have lower functional diaphragm muscle which is necessary to produce a productive cough and remove the risk of pneumonia. So armed with this information i was called by the Covid@home doctor who hit my covid infection hard with precautionary antibiotics, prednisolone, a preventer puffer and ventolin. I won’t lie. The first three days I felt rough -with a sore thoat, a snotty nose but no fever or temperature. I was lucky, have recovered well and am now back swimming and basically enjoying my new freedom of immunity for the next few months.
It turned out pretty well really, but there are some issues that need to be recognised. The number one being support workers and their duty of care to clients. And number two being the issue around emergency support workers in times of need.
The duty of care of support workers is to be professional, know and understand public health orders and to use and be responsible for PPE and their own safety. It is one thing to be a good support worker when times are good but, when times turn pear shaped, abandoning a client is not on! Secondly emergency support workers need to be readily available. I self manage and was so fortunate to have a support worker practically sacrifice herself to stay at my home and look after me for seven days. She was paid accordingly and it must be pointed out did not catch covid from me in the seven days. She still hasn’t had covid. She went above and beyond and her professionalism and understanding of duty of care are exemplary. However, if she had been unavailable, what measures could I have employed? Where could I find skilled workers who would take on 7 days of isolation? This is a direct question to government health departments and the NDIS. In times of need we need help and the NDIS needs to step up with solutions.
Regarding support workers in the field now, how do we instill in our workforce these moral and professional obligations to their clients? Better training, a minimum standard of education and some direct specific workforce training for support workers around their obligations and duty of care. I would suggest nothing lower than an associate diploma. Workers can work toward this on the job, but have a time frame around completion. Secondly we should pay them better. Insecure and casual work does not produce the needed professional standing that this work must aspire to. To coin the old adage, “you get what you pay for”.
In conclusion, my covid experience has exposed the best and worst in our system. The worst being the gaps in the system that do not cater for emergency support workers and the lack of training and guidance some support workers have around duty of care. However, the best far out way the worst. The care provided to me by the Covid@home team and the Disability helpline was fantastic. I was considered as an individual case and a person with real fear and distress and not just another case. I was heard and I felt very well cared for. I am thankful for the lovely patient transport girls who took on overtime to get me home and lastly my support worker Michelle. My situation is not an anomaly but a point in time and space that maybe be replicated at anytime anywhere in Australia. Fortunately for me I was in Tasmania and happened to be in the best place at the right time.
Did you miss our recent webinar presented by the NDIS Quality and Safeguards Commission or do you just want to watch it again?
Well you’re in luck because it’s now available to view on the PDA YouTube channel.
Presented by Director of Engagement, Fran Vicary, this webinar talks about the role of the Commission, its mission to improve the quality and safety of NDIS supports and services and the rights of an NDIS participant. Thank you to Fran Vicary and the the NDIS Quality and Safeguards Commission for presenting this important and informative event.
Whether you’re currently accessing the NDIS, a service provider, working in the disability sector or just interested to learn about the Commission, this webinar will give you a comprehensive insight into the NDIS Quality and Safeguards Commission.
You can view it by going to:
Whilst you’re there make sure that you subscribe to our YouTube channel.
We hope that you find this webinar informative and encourage you to fill in our short survey. It will only take you a few minutes and will greatly assist us to bring you more webinars in the future.
To access the survey, please go to:
https://www.surveymonkey.com/r/2JV7MFB
You are invited to PDA’s next informative webinar, “NDIS Quality & Safeguards Commission: what does it do for you?” on Wednesday March 23rd 2022:
6pm NSW/VIC/TAS/ACT
5:30pm SA
5pm QLD
4:30pm NT
3pm WA
Captioning and Auslan will be available for those who require it. Please email promotion@pda.org.au if you would like to access these services.
In her role as Director Engagement, Fran Vicary will talk about the role of the NDIS Quality and Safeguards Commission, its mission to improve the quality and safety of NDIS supports and services and your rights as an NDIS participant.
Whether you’re currently accessing the NDIS, a service provider, working in the disability sector or just interested in learning about the Commission, make sure that you join us for this very worthwhile webinar.
If you have a question that you’d like Fran to answer, please email promotion@pda.org.au or ask a question via the online chat during the webinar.
To register go to:
https://us02web.zoom.us/webinar/register/WN_ZFpu_SJLSrqFyHIu4Mfw7A
Please feel free to share this invitation with others in your network. You do not need to be a PDA Member to attend. However, if you’re interested in signing up for our FREE membership, you can join our community by going to:
pda.org.au/membership/
Thank you to Fran Vicary and the NDIS Quality and Safeguards Commission for presenting this important and informative event.
LifeRAT (http://liferat.com.au) is a community group recently brought together to provide FREE Rapid Antigen Tests to Australia’s disabled community, and to overcome cost and supply issues and the difficulties and concerns experienced by PWD in trying to access RATs.
PDA’s Ambassador, Dinesh Palipana OAM, in conjunction with Scott, Tim and Tyler from Able Digital Wellness (http://abledigitalwellness.com.au) and Rob from Lovehoney (www.lovehoney.com.au), put together this project to ensure that people with disability are provided with free RAT testing so that they “can get back to living”.
Supported by partners that include Australia Post and Mainfreight, people with disability can register to take part in this incredible project by going to:
http://liferat.com.au
As part of his logistic involvement in the project, Lovehoney’s Rob is also interested in employing people with disability to be involved in the distribution of the RATs.
If you are a person with disability looking for employment and you’d like to be involved, please email Rob directly via rob.godwin@lovehoney.co.uk.
Rob has been doing a lot of work on inclusion with Lovehoney, including his involvement with ambassadors Dylan Alcott and Chantelle Otten Sex Therapist.
For more information go to:
www.abledgitalawareness.com.au/about-us/
With elections looming this year and with accessibility to vote further challenged by COVID-19, PDA is interested to hear about issues that you have personally faced in previous elections – whether at a polling station, early voting centre, via telephone, postal or AEC voting.
We encourage you all to participate in our short survey so that we can ensure that all members of the community have equal access to the political process.
https://www.surveymonkey.com/r/JVYDNNG
Written by PDA President, Andrew Fairbairn.
In my last blog published in May 2021 (https://www.pda.org.au/2021/05/13/the-one-legged-sax-player-on-home-modifications-part-two/), I wrote of the process I had to go through to engage a Project Manager, Builder and OT. Well……I am so happy to write that as of today, the 29thJanuary 2022:
THEY ARE NOW COMPLETE.
Let me take you back in time to the middle of 2021, and please forgive me with timeline, I am old, and I sometimes forget things.
By the end of May, all the reports were lodged with the NDIA by my OT and PM. I then had to wait while they were looked at, dissected, discussed, and according to the Delegate, LOST. You can imagine how that went down with me. I wasn’t impressed at all. My OT had to upload the Complex Home Modification Request (CHM) again, adding yet more wait time.
In the middle of October, yes, five months later, I received a phone call from yet another Delegate telling me that I needed to upload the OT CHM again, as they “couldn’t find it on the system” Well, you can imagine how that went down with me, so I insisted that the Delegate send me this request by email in accordance with my NDIS File stating that I only want contact by email.
The email arrived, and I immediately replied to it, stating that I knew that the document was on the system, and I called the Delegate out. I also copied my reply to NDIA CEO Martin Hoffman, NDIA WA State Manager Ed Duncan and his Associate Manager Nathan Hills.
Now bear in mind, this has been ongoing now for 2.3 years. About 30 minutes later I received a phone call from Ed Duncan, wanting to know what was going on. I explained the situation to him, an lo and behold, 6 hours later a new plan dropped into my email, complete with all the funding required to complete the home modifications.
The build began in early November, with me and my wife moving into the backroom of our son’s house for the next 2.5 months.
I had to modify a few things with the design and placement of things as we went along, but overall, I now have a fully accessible house, complete with wide doorways throughout, ramps to the front and back doors, completely redesigned bathroom and laundry, new carport and a fully electric gate to access the back of the house.
As I close out this chapter, I implore you to keep on with gaining access to funding for home modifications. Stick to your plan, research, and know what you want, but mostly, don’t take no for an answer. YOU’VE GOT THIS.
BEFORE PHOTO
DURING PHOTOS
I will follow this up with a VLOG walk through to show the final product.
Stay tuned and stay safe.
REFLECT
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.
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.
ADAPT
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.
THRIVE
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!
A wonderful piece written by our fabulous TAS Associate Director, Tammy Milne, in November 2020.
Well worth a read.
https://www.tasmaniantimes.com/2020/11/occupying-space-disability-politics/
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