76: When the System Fails to Hear You

What happens when advocacy is met with silence? 

In Episode 76 of Wellbeing Interrupted, I reflect on how emotionally draining it can be when we share our stories, speak up for what matters—and are met with silence. 

Following the powerful conversations in Episodes 74 and 75 about the NDIS pricing changes, I share how I’ve been feeling flat. The silence from decision-makers has been deafening, especially when participants and practitioners are being so open about the real-life impact of these cuts. 

I talk about the emotional toll of advocacy, what it means to fight to stay well, and why we can’t afford to give up—even when the system makes it harder. This episode is for anyone who’s felt invisible, unheard, or exhausted by having to keep pivoting just to maintain their health and independence. 

If you LOVED this episode, please share it on Instagram stories and tag us @hurdle2hope  

KEY EPISODE TAKEAWAYS 

• Advocacy can be energising—but when ignored, it’s deeply deflating. 
• Acknowledgment is powerful. When someone shares their story, listen—and learn. 
• Allied Health services are essential to living well, not optional extras. 
• NDIS price changes are forcing participants and practitioners into impossible choices. 
• When support is blocked, the system risks pushing people toward relapse and hospitalisation. 
• We must keep speaking up, sharing our stories, and finding new ways to care for ourselves. 

SHOW RESOURCES 

• Sign the petition: https://www.itsnowornever.com.au 
• Listen to Episode 74: Giarne Ashby on how these changes affect participants and providers 
• Listen to Episode 75: Jarrod Sandell-Hay on lived experience and life-or-death realities 
• Listen to Episode 34: How Allied Health transformed my recovery from muscle tension dysphonia 
• Listen to Episode 37: Jeanie’s story and the emotional cost of being denied access to treatment 

Unexpected hurdles interrupt all of our lives. It is how you respond that will define your experience.

To find out how Hurdle2Hope can support you or your organisation please visit hurdle2hope.com.

I would love to connect with you, Teisha.

Also, are you following @hurdle2hope on social media... I would love to see you there!

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Transcript

Episode 76 What Happens When Advocacy Is Met with Silence

Teisha Rose: [00:00:00] Hey there. Teisha here and welcome to episode 76 of Wellbeing Interrupted.

A little bit of a secret. This podcast is meant to happen today and it will, and I'm recording it, speaking into my phone, standing up in our caravan, , because got a bit of a sore back, so I thought I'd stand up and just chat and I was feeling pretty flat the last few days and I thought, oh, I dunno if I can be bothered doing this, but I can be bothered because I love sharing my insights.

And having this platform, and I think it's really important this week to share an episode all about when advocating or advocacy is met with silence. If you haven't already, even after this episode, listen to episode 74 and 75. These are all about the NDIS price changes. NDIS for those of you not in Australia, is the [00:01:00] National Disability Insurance Scheme.

Again, it's just about when funding is cut and the impact that has on the most vulnerable in a society and. Yeah, it's been a very energizing couple of weeks of everyone sharing their story and really being open and honest and authentic about the impact of these changes and that advocacy when it's met with silence, that has an impact.

 [00:02:00] 

Teisha Rose: Advocacy really has an emotional cycle. And it can be so energizing. Energizing when you're surrounded by people who agree with you, you know that certain changes or governments wanting to implement is gonna have an impact on you and you all collectively feel like you are fighting the same cause and that is energizing and that's incredible.

And it's emotionally taxing because many people share their emotional stories. We heard from Giarne and Giarne shared the impact. These changes. The NDIS price cuts will have on her as a [00:03:00] participant of the NDIS, but also on her daughter and the impact, and that's really emotional. Knowing that price changes will impact.

Your own child's life moving forward. Also on Giarne in terms of her OT practice as well, and all the clients she's responsible for, you know, and the services she provides regionally and those now, , who knows what's gonna happen with that. Then I spoke to Jarrod. Jarrod is an NDIS, sorry, a disability advocate.

He was amazing. I loved chatting to Jarrod it was real great insights for me as to the dire impact these changes will have on the most vulnerable in our community. And Jarrod talked about it being a life or death situation, and I. Thought, oh, I wonder. I wonder if that's a bit dramatic and it's not. [00:04:00] Chatting to Jarrod who knows firsthand that not having Allied Health Services, particularly helping in creating behavioral support plans that will impact those most vulnerable in our community, and what's really frustrating.

Why I think I was feeling really flat. I know others are feeling flat logged into LinkedIn each day. Practitioners are talking about having to close their businesses. You know, that's the dire situation and what keeps coming up when I'm reading lots of the comments and all is all the pain being experienced by participants, by practitioners.

It's not been acknowledged. It's been met with silence, and I talk about when you're living with a health condition or you're going through a crisis, then you experience the [00:05:00] emotional turmoil of that. What helps you get through that turmoil is acknowledgement, and we as a group haven't been acknowledged.

And that certainly feels that way as a participant because apart from being on LinkedIn and finding about out about this and from my own physio, her letting me know, I wouldn't have any idea of the impact this was gonna have on me. And there's so many participants out there who don't even know what's ahead and for.

They're not to be acknowledgement of the pain that this will create on the fear that many are experiencing already. That's awful. And if we take anything from this is the power of acknowledgement. So if you know someone going through a really, really difficult time, [00:06:00] acknowledge that pain. Let them feel those emotions and acknowledge it.

Don't make the person feel invisible because that's how many of us in this, you know, involved in the it's now or never campaign. That's how so many people feel ignored and invisible.

And I think on a personal note, and I'm sure others living with health conditions or or disability may hopefully relate if you're committed to living well, and I certainly have been since been diagnosed with MS at 22. I've done everything I can possibly do to live well and embrace my life. And for me, the key part of that is engaging with Allied Health Services.

Physiotherapy has been the core of that. You know, [00:07:00] that has been the reason I've been able to keep functioning, walking , and at other times. Occupational therapists have definitely played a really important role in 2003. I couldn't use my arms or hands. They definitely helped me in rehab, um, to be able to function and recover from that.

And also, you know, OTs in terms of helping make him. You know, different choices in relation to keeping on working and the ergonomics around that. And , there's so many things that OTs have done to help me. Speech therapy, you know, I've also shared, I could hardly speak due to muscle tension, dysphonia, and.

That has required intensive, , speech therapy and these cuts, the freeze on rates, but also the cuts in travel that's gonna impact how many, , [00:08:00] speech therapists can get to participants like me. So when you're doing everything you can to stay well. And that's okay. That's my choice, and I want to be actively or proactive in that.

But when the system blocks that, when the system makes it so hard for you to stay well, that's really deflating and frustrating and it makes you angry. It's like, are you happy for me to be stuck in the hospital getting treatment? Not running my business, not participating in community, you know, not doing all these things I've done in the last 28 years.

Are you happy with that?

And that's what's so frustrating. We're being blocked by a system and that to me makes [00:09:00] no sense. Then what makes no sense is if they can't see the impact of what these cuts will do, why not listen to the people on the ground? Why not listen to the participants who can share over and over and over again the positive impact that allied health practitioners have had in them living well?

But then I've gotta make a choice, and I talk about this all the time. You know, you either sit in this frustration or you use the frustration to propel you forward. So there's lots of energy in frustration, and I don't want to sit here being frustrated and pissed off at the world because that's not gonna help me live well.

So as tempting sometimes as it is to give up, to think, gosh, it is just too much of an effort. If I'm gonna keep being blocked in living, well, [00:10:00] what's the point? Again, that's not me, and that's never been my attitude in living with ms. But you do sometimes just have to sit in those emotions, but then, as I said, use those emotions to move you forward.

And that's definitely what I want to do because at the end of the day, I end up. Not physically being able to do the things I can at the moment. If I end up in hospital, the government's not gonna care. They won't care less, but I will be miserable and that's not what I want my life to be. So I've gotta start thinking differently.

I've gotta think, okay, how can I still perhaps engage in supports for me? I'm very fortunate. I know that, that I could, . Try and work something out, I guess, with practitioners who can't come to me and visit, you know, change practitioners, maybe go into a different, , setup or, you know, travel an hour or two somewhere to get some treatment.

Again, I'm fortunate that that may [00:11:00] be an option, not a great option, but maybe, , I can do that. I can maybe start looking online to do some more things. Again, it's frustrating because that's no way, no way. Will replace what the quality of care I've received from my neuro physio for the over the last 10 years.

But I've gotta do something. And like with practitioners, Giarne was amazing when I chatted to her, she's like, right, you know, we've gotta think differently in our business. But for some that might be impossible, thinking differently in their business might be not servicing. NDIS participants, and that's devastating for me and others, but that's the decision they may have to come up with because at the end of the day, the government's not gonna care if they're making a loss.

So, you know, so much is going through my mind, but this is what I constantly have had to do [00:12:00] in living with ms. And now with cancer, constantly have to pivot. Do things differently and keep moving forward. It absolutely sucks that the government, that systems try to get in your way of living well. But as I said, I've got a choice and I do need to live well and I've gotta look outside and think, you know, this move to Daisy Hill I needed to do for my cancer.

Maybe for my ms, and I wrote this to, um, an mp, a local mp. I said, for my cancer, living on a hundred acres of land has led to my healing. But that choice to live in your electorate now is not so good for my ms. But that's not fair, , and you don't want people not to live regionally because regionally is great for your health.

 So sorry, a little bit of a ramble, but as I said, . I just wanted to still do this podcast [00:13:00] episode, , even though I'm feeling a little bit flat, but . I went and had a haircut yesterday, so I'm, I'm feeling nice. It always helps. , And yeah, and I'm absolutely loving where I am.

It makes me appreciate. Beautiful, sunny day like today and looking outside and hearing the birds and thinking, yes, yes, it's worth embracing life. Yes, it's worth pushing through and not being scared of what's ahead, but trying to impact that. So as I mentioned at the beginning, advocacy can be incredibly energizing and it is so worth it.

It's so worth sharing our stories, feeling vulnerable because those stories are important and help us not feel invisible. But that being said, if advocacy is met with silence, that's deflating, [00:14:00] that has an emotional impact, that makes you feel worthless, that also makes you feel invisible, but. Your health and wellbeing matters.

Your voice matters. And what I know we need to keep doing is to prioritise our own wellbeing and work out how we can do that. But let's stay loud. ,

Just because. Advocacy is met by silence. Don't think that means that we have to stay silent. We still need to share our experiences, our insights. We need to have lived experience front of mind when these decisions are made and. That will make us feel better and more involved. And we know, you know, if we're met by silence, acknowledge , , the emotional dip, I guess, in that.

But also don't be afraid to keep making noise and keep pushing forward. [00:15:00] So that's. All from me. . I did mention a few episodes, 74 where I spoke to Giarne Ashby, and that was all about her experience as a participant, as a mother of a participant, but also as a ot and whose business will be impacted by this.

I also spoke to Jarrod Sandell-Hay. Jarrod is an incredible disability advocate. He's actually just got a new job in the self-advocacy resource unit. Um, so yeah, he's insights were incredible and really worth listening to. Also, I mentioned about the whole campaign for including a drug in enhertu, for those experiencing stage four breast cancer in England.

Again, that campaign. Was devastating to witness and that's why I wanted to speak to Jeanie in relation to that and the impact not [00:16:00] accessing a life extending drug is having on her emotionally. And of all of those living with breast cancer in England,

and if you're an allied health practitioner and you want to listen to a relevant episode,

have a listen to episode 34. That's about muscle tension dysphonia, and how speech therapy and Allied health transformed my recovery. I wouldn't have recovered from that without my speech therapist, but also the incredible work my neurophysio did as well during that time. So that's the real impact you have as an Allied health professional.

On our experiences and it's devastating to know that these changes will make life and your business so much more difficult. And I think that's what hurts as well. , Because as I keep saying, , and it makes me emotional, the darkest times in my life. [00:17:00] That's when a physio has been by my side. I. You know, in my twenties I went through some horrendous times with MS, and I've talked about that. And during those times it was the physios that were there holding space for me and also enabling me to have confidence and hope that things would improve.

, Don't forget the It's Now or Never Campaign. It's now or never, dot com au. They're, I think, taking a break for a few days because it's been very emotional for everyone involved with that. But as they said.

They won't go away, so more things will be happening, I think next week. Okay. Have a good week and look forward to chatting soon. [00:18:00]