Speak Up

This week, I’ve been eagerly awaiting the arrival of an “upgraded” diabetes meter. This device helps me monitor my blood sugar levels. Three or four times a day, I’m pricking my finger and placing a drop of blood on a strip. It provides immediate results and also aids in tracking long-term trends, enabling medical specialists to make more informed treatment recommendations.

The meter provided by the hospital was certainly functional, but a friend recommended a “better” version with an advanced screen and seamless integration with the MySugr app. Unfortunately, my local pharmacies did not carry this upgraded meter. However, I found it online at a fantastic price, and it arrived this morning via an Australia Post courier.

Diabetes testing meter

When the courier arrived, I politely asked if he could bring the delivery to my apartment’s front door instead of me navigating the stairs due to my condition. Straight away he declined saying he wasn’t allowed to, despite my explanation of the circumstances of being unable to leave the apartment right now due to my disability. After some discussion, we agreed that he would leave the package at the nearby post office for later pick-up. I was mostly irritated when I received an email claiming the delivery failure was due to an “intercom or doorbell fault,” which was far from accurate.

Innacurate explanation of what happened this morning.

In contrast, I received a smooth afternoon delivery from OfficeWorks without any similar issues. I have also received grocery deliveries from Woolworths without encountering problems when accessing my apartment via the building’s lift.

Today, I made an outside tripp with my support worker, which included visits to the local pharmacy, a computer shop, the Service NSW office, and a return visit to my doctor’s office.

The reason for my doctor’s visit was related to a requirement from Service NSW for an “original” document, rather than a copy, to support my application for a mobility parking sticker. Even though I don’t own a car, the sticker would be beneficial when traveling with friends to secure disabled parking spots.

Since the Service NSW office is conveniently accessible via light rail from my home, I thought it would be practical to handle this in person.

However, I was surprised to learn that I could easily upload a document online, even a fraudulent one, but doing the same in person required a orginal piece of paper from my doctor. Yes, in 2023.

I explained my situation to the receptionist at Service NSW, stating that my doctor had emailed the document to me. When he refused to accommodate this, I requested to speak to his supervisor. Unlike the kind and helpful receptionist, the tone in the supervisor’s voice was patronizing, dismissive, and unhelpful. It would have shown more empathy if he had grabbed a chair and chatted with me, instead of towering down from on high. While I remained composed throughout the interaction, I expressed my dissatisfaction with his attitude.

Coincidentally, a friend was present at the office and witnessed the entire ordeal with disbelief. “You have to feel sorry for him; he was only doing his job,” she remarked.

This situation reminded me of a similar experience with CentreLink for my family during the aftermath of the Lismore floods, where they also required physical documents in person but accepted uploaded documents as JPG or PDF without question.

The Service NSW representative cited Transport for NSW policy as the reason for their requirement and suggested I make a recommendation for policy change. “Dont you worry about that”, I told him, adding that I was a journalist and knew how to look after myself.

On our way back to home, a representative from an organization called “Better Streets” https://www.betterstreets.org.au/ approached me, asking if I could answer a few questions about disability access. Given my recent experiences and the release of the Disability Royal Commission’s recommendations on the same day, I was more than willing to share my thoughts.

Today, I also provided feedback to the manager of my support worker. I had some concerns because he has often required extensive guidance about the assistance I needed, which sometimes needed to be repeated. Furthermore, his support while I was in a wheelchair was lacking. I didn’t feel “safe” with him as a “driver”.

In my message to her, I mentioned that he arrived an hour late and requested to leave early that day, citing food poisoning as the reason. He only responded after my second “where are you” text message. I emphasized how I plan my schedule around his visits, including appointments, and the importance of timely communication. She promptly responded, offering to discuss the matter over the phone, and I hope we have resolved the situation.

When I shared today’s experiences with a friend, she commented, “You’ve become quite the disability advocate.” While I believe that may be an overstatement, my person lesson for the day was that it’s essential to speak up when you have the ability to do so, as many others may not. It will also help create awareness where people may not realise it’s an issue.

Speak up!

5 Replies to “Speak Up”

  1. I would hope that most people would welcome advice and awareness from clients etc. You will and already have struck many things you never gave thought to, as most of us don’t.

    1. Compared to the stuff in the Disability Royal Commission, this is small fry. Nonetheless, it shows how the world needs to go a long way. I wonder what difference the ageing population will make to awareness about this stuff.

  2. As a pretty capable and competent person, I find navigating the support services and that whole landscape really challenging (and sometimes harrowing)! I find it distressing to think of the people who don’t have an advocate – it can be very difficult and confusing.

    Unsolicited advice – if your support worker is not working out, really do find another! Giving feedback is great, but ultimately you call the shots – especially if you are self-managed (which I hope you are!). You need to have a good, supportive! experience.

    1. Hi Carol, I have given some feedback directly and to the agency. I had a video hookup today with a new worker. He seems to have a good attitude, so fingers crossed going ahead.

  3. Absolutely speak up and please be VERY firm about your ‘support’ worker…near enough isn’t good enough…

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