Sick and confused

We recently had covid in the house – my son and I were sick with the same symptoms. He tested positive, I did not.

Anyway, it was great, yet shocking to get insight into the process from ACT Health on the “other side” as a case and a close contact.

The initial email my daughter and I received was the best piece of communication we received. It was long but clear and stepped us through what we needed to know initially.

The only reason we got that email was because I had seen on social media that we were supposed to register online as close contacts. At no time during the testing process or wait were we given this information – or any other.

My son had been tested through a government-funded respiratory clinic, so was registered through that process, and was contacted twice by the GP, to check his general wellbeing.

After that we received information on a daily basis. I dutifully read it – but my youngest did not. When questioning why not, I realised that the email did not outline its purpose and importance in the very first sentence. Because my youngest (neurodivergent and highly anxious) had asked me to do their registration, they didn’t realise they were supposed to complete an online form every day about their symptoms. They assumed I’d take care of anything needing to be done.

I spent a lot of time scrolling through the ACT Covid website, looking for information we needed to know. The whole process had changed days prior, so information on the website was conflicting from page to page. You might say that the rapid change was the reason, and I get that – but as neurodivergent / disabled people needing that information NOW, it should have been a priority for the site to be updated ASAP, not days later.

I also attempted to contact the care at home team in anticipation of a positive result for myself, given I am immunosuppressed (I think they consider me mildly so now though, and I wouldn’t have warranted extra supports) and immunocompromised. Despite being a close contact with the exact same symptoms on the exact same days as a confirmed household case, I was not able to receive any supports, or even information, unless I had a positive result. (Note that I was not tested by PCR until 3 days after he was, due to the slowness of tests over that week. We had both done 2 negative RATs prior.) That was extremely stressful given how unwell I was feeling.

Not once were any of us asked to identify as disabled, high risk, or given information about easy read or easy English information.

A light up sign contains letters spelling NOT TODAY #COVID 19
Photo by cottonbro on Pexels.com

Speaking with others online during that week and the following, I heard that disabled people and their families:

  • Who were tested through Capital Pathology sites were not registered with ACT Health. They went a week without any communication about what they should do, as well as no test results (Capital Pathology were taking a week or more to return results at that stage.) Remember the ACT Health website was not fully updated at that time.
  • Were quarantining when not required under the new guidelines. This is not necessarily a bad thing – but it did mean families were spending money to stay in alternate accommodation needlessly. In that situation those involved had also tested through Capital Path and had not been registered with Capital Pathology.
  • Did not know they could and should register on the ACT Health site and did not receive the information they needed, or report symptoms.
  • Were provided the wrong information by their GP and were fully released from quarantine after only a few days despite still having symptoms.
  • Were confused through the whole process and didn’t not fully understand the communication they were receiving.

By the end of that week Advocacy for Inclusion had released some updated Easy English documents, which is a relief for people needing easy English. (Note that they are not mentioned at all on the front page. Click through to Resources & Information to find them.) However at no time has ACT Health or other parts of the ACT Government shared this information. Nor is there easy read information for those who won’t identify as needing easy English.

It was 2 years yesterday since the first Australian case of COVID was diagnosed and it is EXTREMELY disappointing to see our territory providing such poor support to our community – not just people with disabilities, but those with low literacy, First Nations communities, aged and dementia communities, those with CALD backgrounds and more. This is such an easy fix with so many in the local community who possess the skills to solve this quickly. Please ACT Health, reach out and make this happen ASAP, and every time there are changes.

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