Friends, Family & Carers Forum

[Determined]

The positive I can see developing for our son is increased confidence in doing things that he thinks he can't and relies on us as parents for.

It is also giving our s2 some after school breathing space as he is also 'leaned on' a lot. 

That and the ability to get s1 engaging in activities with the assistance of a support worker that we as parents unfortunately don't have the capacity to sustain. Darling due to mh issues and myself due to burn out and fatigue related issues. 

[SarahPeerAmb]

Hi @Determined - thanks for your contribution. That is great to hear that the school principal was really helpful. It is great to hear those stories. I definitely believe that assistance with NDIS applications is essential. It's great too that you focussed on S1 being independent, that is a really good tip if that is what the participants want (my brothers' main goals are around being independent of family). Sorry to hear that you are only just accessing services 9 months in, but great to hear that you have had some recent positive experiences. It is amazing how chance encounters can work out brilliantly. That is another tip that I received early on which I found useful - with the NDIS you are able to 'think outside the square' and imagine possibilities that you would never have imagined in the past, who knew that the shopping centre could be so useful!

[Determined]

@nashy  they have been able to interpret what the plan and what it covered.

LAC advice was to Google it.

And some of the services we are accessing LAC said 'didn't think would apply'

Service providers have shown how these services apply and bow they will benefit long term.

We will also have one of those providers assisting us with a review early next year with developing a plan with maximum benefit. This will be after working with our s1 over coming months and gaining greater insight into his needs 😊

This has relieved a high level of anxiety for me as it is basically up to me. Unfortunately like many things it is all too much for my darling to process. 

[Determined]

My biggest barrier starting out was finding someone who has our best interests in mind rather than what can we do to spend our allowance.  Having seen waste in many government funded programs. I want services that are of benefit not just spend money for the sake of it if that could be better used to help someone worse off. 

[SarahPeerAmb]

Can I just say @Determined that your lived experience sharing is really appreciated. It is so great to hear that the NDIS is helping with improving the confidence of your son - it makes me want to cry with joy! You sound like a very devoted and considerate parent too - thinking of the impact on your other son too. You sound very wise and very organised 🙂

[Determined]

LoL @SarahPeerAmb  I try to be organised.

Had I been a little more organised we would have been up and running 9 months ago.

Unfortunately S1 is only one (very important) piece of a big messy puzzle. I am most grateful for the guidance we are now receiving. 

[nashy]

Agreed @SarahPeerAmb Really wonderful to hear your story @Determined We appreciate you being so authentic and open!

[nashy]

Moving onto question three 🙂 Thank you @Determined @SarahPeerAmb @Shaz51 and others for your involvement 😄 

As a carer or supporter of a loved one, what’s been one of the more challenging components in your journey with the NDIS?

[SarahPeerAmb]

So sorry to hear about your experiences with the Local Area Coordinator @Determined - that sounds dreadful. Going back to what I was mentioning before, I believe carers need to have large support networks so that they can draw upon each different support person and their particular role/perspective and work out how that particular person might help their loved one. Independent advocates can be really useful but there are not many around as far as I am aware. That is another aspect of the NDIS that I love - that is it is tailored to a participants' specific needs. In the past, my brothers were viewed as their diagnosis and not the amazing human beings that they are - but now we are gaining much more insight into what specific needs they have, but also their workers are helping to draw out their strengths and their interests. Our anxiety levels have also reduced substantially @Determined since my brothers received their first plans earlier this year 🙂

[Determined]

The most challenging aspect...

As mentioned above. Actually getting started once we had our plan.

Part of that has been knowing what questions to ask re services.

At a recent consultation with new provider I saw the value of knowing what and how to ask a question. Lady contacted someone I had already tried and decided did not fit our plan. After some very direct and structured questioning the service does fit and will be of great value.  It would be nice if this could be added to the scope of the LACs but it is possible the additional experience this lady has is what made the difference.