Lived Experience Forum

[Seachickens]

Recently I was granted a package from the NDIS. I made a big mistake when I was applying for access to the scheme. I had huge amounts of support from my psychologist, especially in terms of getting the report written that supported my application. I didn't realise that I desperately needed someone to walk through the rest of the process. I have some goals that were tweazed out by someone from the agency. My plan was then granted around that conversation. 

I did ask that they send me a hard copy of the proposed plan so that I could try and find someone to go through that with me. That didn't happen. Right now I have a generous plan and I'm grateful for that. Almost all of the funds arr for support workers. I don't need and really can't handle that many people in my home doing I don't know what. What I need most is capacity building, and I thought that the report done by my psychologist made that pretty clear. 

At any rate, I have eventually found someone to do the plan management for me. I still need to make a phone call in order to secure coordination. The big thing that I see is that if I was able to organise all of this by myself, I wouldn't need a package. So far no money has been spent and no support has happened. My plan was granted in early march. I don't want to waste this opportunity. I'm also kinda stuck in a pretty dark place in terms of the stuff we're working on in therapy. I know it's a simple phone call. I also know that it's beyond me at the moment. 

In therapy we are working with some terrifying memories. I'm really dissociative most days and when I'm not tuned out I'm scared out of my mind. I've git a pretty good suite of coping strategies and they are working well at keeping me out of hospital. That's a huge thing right now. I'll try again tomorrow to make the phone call and I hope I'm able to. Thanks.

[Gwynn]

Support coordination can be a real game changer, it’s kind of like having a disability related secretary.

If you really can’t use your core funds to help build your capacity, maybe a quick section 100 review might help: https://www.ndis.gov.au/applying-access-ndis/how-apply/receiving-your-access-decision/internal-revie...

There is an NDIS Grassroots Facebook group which is really helpful with advice.

[NatureLover]

Sending wishes you can make that phone call and get the actual suppport you need, @Seachickens ...

[Gwynn]

apparently they're phasing in a new funding structure: 'fixed' vs 'flexible' (https://myplanmanager.com.au/ndis-capacity-building-supports-budget/). I'd be tempted to double-check that you're not, in fact, in that funding arrangement. Can you access your NDIS portal ok and see the funds you have? If not, does your NDIS plan manager have a portal where you can see how much money you've got in real-time?

[Appleblossom]

@Seachickens 

Maybe just start with one support worker and ask them to be creative about the ways they support you.  You can feel your way to the best to use the support, even if its just going for a walk with someone. 

[Gwynn]

You might be able to maximise your capacity building funding by accepting any interns that your allied health provider is mentoring (see https://www.ndis.gov.au/providers/working-provider/allied-health-providers/allied-health-practitione... for more details).

[TuxedoCat]

hey there @Seachickens! I hope you found the practical advice useful. 

I can relate to working through difficult things in therapy and the impact it can have on the rest of life, you're not alone there ❤️ 

What do you think is the biggest barrier to making the phone call? for example, is it finding the energy for it or being nervous? 

I know for me, once I figure out what's stopping me, I can try to figure out a way to get through it. 

What do you think?

Sitting with you,

TuxedoCat

[EternalFlower]

Hi @Seachickens I hear u, standing in solidarity. The ndis application process is so intense. I hope u get through and get Ur needs met, 💛 💓 you deserve it as u said, not being able to coordinate these complex hurdles is why we need it!!

[Seachickens]

Hi @TuxedoCat for me it is straight up call reluctance. If, like me, you've ever had the misfortune to do sales work there's a thing called call reluctance. There aren't necessarily any specific reasons for it just unable to muster whatever it takes to make the call. I'm going to try again later this morning. Thanks for your thoughtful reply.

[Seachickens]

Thank you @EternalFlower. I appreciate your thoughtfulness. Once I get home I'm going to have another shot at making the call. Cheers