Topic Tuesday // NDIS: A Carers Journey // Tues 19 Nov, 7pm AEDT

Unfortunately as we are in a regional area I have not seen too many workshops in our area. Other than some early workshops at S1's school (special school) that was more about getting the application process started. @Former-Member @SarahPeerAmb

I can see how that would be most helpful.

Okay dokes @Determined @SarahPeerAmb and anyone else still reading along 🙂

Our final question of the night with ten mins to spare 😄

What is the best tip you would give other carers with regard to the NDIS?

@Former-Member

If at first you don't succeed. Ask and asks again.

If first organisation you approach does not seem to have the answers ask some one else.

Don't be afraid to ask and be direct about what you need/ want. This is something I struggle with but saw the benefit with my now advocate.

At the end of the day these people are there to help. If they get offended because you are too direct then they are not a good fit and we need to try someone else anyway . (Not endorsing being rude at all. Just direct and honest about what is required).

Hey @Former-Member and others out there in cyberspace, with regard to the question on the best tip I would give other carers - you need to be able to describe the “worst day” scenarios to the NDIS in order to ‘meet access’. It is also very important to describe that your informal support is no longer sustainable if that is the case – my parents are ageing and part of my brothers’ goals were to live independently of family – so we can all just be sisters, brothers, parents, etc. However, to end on a positive note (as the above tips are a bit negative and I don't want to finish on a negative note as this forum has been so positive and helpful) I would also recommend surrounding yourself with lots of positivity and focus on the long-term goals of gaining additional supports for your loved one. The NDIS application and review processes can be very stressful and scary, but if you focus on the long game that will make it a whole lot LESS stressful and will sustain your energy/spoons/buckets a little bit longer 🙂

Hey @Determined This here: "If they get offended because you are too direct then they are not a good fit and we need to try someone else anyway . (Not endorsing being rude at all. Just direct and honest about what is required)."

What a brilliant point, and also quite relevant to many aspects of accessing support - even outside of the NDIS! We need to search for the right fit for us, and it truly is self-care to be direct in what we need from services. Thank you @Determined

Great tips @Determined ! Love them!

Definitely taking away the theme of "The Long Game" Tonight @SarahPeerAmb ! Super important, understandably easy to fall off from the light at the end of the tunnel - but sounds like it can pay off in a huge way 😄

wow , thank you @Determined What a brilliant point,

Also from back one question.

One of my barriers has been in answering questions and defining what we need.

Because the disability is not physical it is not easy (for me) to define. We do what we do because he is our son. We don't compare abilities as our 3 boys are unique and special in their own ways. We have been supporting him since birth and while encouraging growth find it hard to be critical about lack of growth or ability. Something else this moat recent support service totally get and has been able provide guidance on.

You are spot on @Determined intellectual disability is no doubt more challenging to define. Really promising to hear of these newer services. I look forward to hearing updates as to how they support your family. It is so great there's already been some legitimate guidance 🙂

Alrighty crew!! We are wrapping up now. Thank you to our wonderfffulll @SarahPeerAmb For all of her incredible insight. You have truly taught myself and others so much tonight, and provided some incredible strategies from your own experience supporting your Brothers.

Thanks @Shaz51 @Former-Member @frog and others! I will leave the thread open until tomorrow for those of you who would like to debrief.

Goodnight all 🙂 Have a restful Tuesday.