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  • Writer's picturePeta

How do we improve disability care?

This episode is not appropriate for children. Listeners discretion is advised.

This is such a complex question to answer.

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Episode transcript:

Peta [00:00:00] Before we get started this week, I just wanted to put a warning at the start of this episode to say that this is quite a heavy one and not appropriate for children. If you are not up to that sort of subject matter, I highly encourage you to wait till next week.

[00:00:22] Hello and welcome to The I Can't Stand Podcast, the podcast, answering your questions on what it's like to live with a disability. My name is Peta. I'm your host. I have cerebral palsy and I love to answer your questions. This week was a really challenging question if I'm honest and I hope you really enjoy it. I'm always open to learn more and your encouragement, messages and perspectives really help me. If you'd like to ask me a question, there are three ways you can do so. One by my Instagram @petahooke, which is spelt P. E.T.A.H.O.O.K.E. By my email at or via my website OK, without any further ado, let's get into it.

[00:01:32] This week's question came from Daisy. Daisy asked me Peta, how do we improve disability care? That's a pretty detailed and tricky question, huh, at least I think so. Well, first of all, I think it's important to recognise that many people with a disability, whether it's visible or invisible, do need help and support in all different forms. In particular, for this episode, I'm going to focus on the people that help us day to day. Because as much as medical professionals like doctors, physiotherapists, OTs, psychologists, psychiatrists are invaluable to how we live our lives. It's often the people that we see day to day that aren't necessarily recognised by the wider community for their contribution to our lives. The people that have cared for me in the past, have defined my independence, have defined my ability to live the way I want to live, and have defined my ability to maintain employment. And let's just say these people do not go into the industry to get paid well.

[00:03:02] The lack of appreciation and recognition for these people, I think is pretty ironic. And that's part of the reason why I think the system is so broken, it needs so much work and recognition. You only have to look at the statistics of overall health, of people with disabilities to know that there needs to be more work in this area. For example, people with disabilities in Australia have higher rates of diabetes and mental health problems were more likely to be obese, were more likely to smoke, and were more likely to be physically inactive. And don't get me wrong, of course, there are some fantastic people out there that want to help and make our lives more independent and more positive. But there's got to be a direct link between those facts and the health of people with disabilities.

[00:04:09] Annie Smith, who also lived with cerebral palsy. Tragically passed away last year because of the mistreatment and 'miscare' by her carer. I'll link a story in the show notes if you want to find out more. Those are the sort of stakes that we're talking about here. I'm a really lucky, lucky person that I'm able to advocate for myself, I have a family and lots of friends that would check up on me if I all of a sudden disappeared. But lots of people who have disabilities don't have that safety net and are solely reliant on a stranger that comes into their home to care for them.

Speaker 2 [00:04:57] How do we try to make change? Well, firstly, I think the care companies need to illustrate strong leadership. And they need to understand the quality of service that's occurring every day. If that means that somebody has to come and monitor other carers while they look after someone every two months to make sure that the house is clean and the person is receiving the care that they require. Then so be it. And the carers have to have power to also make change if needed. They need to feel like they're valued and not voiceless. I know a lot of the time I would hear my carers. Feel like if they walked into a house and there was an issue, say a fellow, carer hadn't made the person breakfast before they arrived. There was no real way to make sure that that wouldn't happen again. So when you're not feeling valued and you don't feel like the quality of service is reflected in what you're comfortable with. No wonder people leave the role.

[00:06:17] I also think there needs to be a change in how the carers and the person with a disability are matched. It's really hard to welcome a stranger into your home, but it's even harder when you have nothing in common with them. There also needs to be thought in sustainability when gaining workers into the workforce. There aren't many barriers to entry for people who want to become disability support workers and the like. And I think that's part of the problem.

Speaker 2 [00:06:55] You know, we all need to be employed and have the ability to put food on the table. I do believe this is an industry that really requires you to have a certain passion for. It's can be sometimes a very hard and tiring job. And if you're not passionate about what you do then you're not going to put in the same sort of safeguards to make sure. That the service that you're providing is of a certain standard or quality. Because often these cares become burnt out and no longer really care for the people that they are caring for. I used to be constantly perplexed by the lack of understanding the people used to have about what it means to live with cerebral palsy, these carers had completed their certifications in disability. And yet to them, the fact that I had a job. And then I could drive a car, the fact that I had friends and the fact that I lived independently and I only needed care for one hour a day. Was so unusual and so hard to understand that they often didn't believe me. Which, of course, is quite frustrating. To me, it just highlights how much disability qualifications are so generalised, and I appreciate that it must. Be difficult to teach this subject matter. This is where having people with disabilities come in to educate people while they're gaining their qualifications, I think is a really important technique. That hasn't been implemented enough.

[00:08:58] I really do hope that disability care in Australia improves. Because its current state can be quite scary. This story is at the end of the podcast for a reason, so if you're not up to a fairly full on story, I suggest you in the podcast now. And listen to me next week. At the time, I required someone to come to my house three days a week at six thirty in the morning to help me get ready for work. My normal carer called in sick. So in desperation, my care company outsourced to another care company. I didn't know this until the person was standing at my front door. She seemed nice enough and it was six thirty in the morning, so to be honest, the coffee hadn't really kicked in. I just wanted a shower, I was already running light and I was quite busy at work and just wanted to get on with it.

[00:10:08] I got in the shower and while I was washing my hair, I asked her to make my bed. She sat on the bed and sort of looked at me. I repeated myself. And she came towards me while I was in the shower naked. She said a word that I'm not actually allowed to say on a podcast, but it starts with R and it's related to sexual assault. So I'm hoping you can join the dots and I'm hoping that doesn't get me in trouble. But I think it's important for you to know the actual word that she said to me. The question she asked me was, have you ever felt like you were going to someone? Luckily, about three weeks before this incident, I had just completed some mental health training. I said, no, I've been very lucky. Quite alarmingly, she then went into detail about all the instances that she has felt like someone was about to do that to her. I'm in no way a medical expert. But as the time wore on. She was talking to people that weren't there, so I was quite scared for my safety. I acted as calmly as I possibly could and made sure she wasn't going to harm herself. It didn't really hit me what I experienced until I arrived at my desk. I asked my boss for 10 minutes to make a phone call, that phone call, of course, was straight to the care company. To let them know that the company that they had outsourced had provided me this person this morning. Of course, they were shocked and highly concerned. I said, look, I'm fine, but I'm concerned about the next person, she's going to see.

[00:12:21] I am not saying that this is a common occurrence for people with disabilities when engaging with disability care. But it does raise and highlight the bigger issue of how we ensure safety to everyone. There is no doubt things need to change.

[00:12:47] Thank you for listening to this week's episode. I hope you enjoyed it if you did and you listen on Apple podcasts, can I ask you to leave a rating and review? It allows me to get found on the platform or better yet, share my profile on social media. I love connecting with you and I love the community. I'm building until next week. Guys have a good one bye.


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