Today's visit to NDIS and what may come from it.

Today I am totally mind blowingly frustrated! (Insert cus words) This story is sad for anyone with a disability!

I am going to tell you about my visit to NDIS (National Disability Insurance Scheme). It’s not my first visit and I’m sure it won’t be my last.

My son Diesel got his official diagnosis of ASD in December last year and his story is much different to Orlando’s but for the purpose of this story I will explain that another time.

Knowing the process we immediately applied to participate in NDIS for funding of a child with autism. (I will do a post on handy tip how to in the near future, I’m sure a google search would help)

In March after chasing NDIS we received a letter stating we had been accepted to participate in the scheme and NDIS would be in contact with us to make a time for a planning meeting. I laughed at that, I’ve played the waiting game before. Patience is a skill I have acquired. NOT!

In the last few months I have made phone calls to the NDIS call centre to ask if any information could be given to me about wait times or if our case had been allocated to anyone? I was told a note would be placed on my file to say I had called and if I hadn’t heard anything in 3 days to 2 weeks to call back. So I called back in 3 days as one staff member told me and then in 2 weeks as the next. All the while they keep adding notes and the call centre staff tell me something different again, at one point putting me through to Latrobe Community Health Services so that I could speak to a LAC about making a time to have a planning meeting (WTF my case hasn’t been allocated yet). When I called back they tried to do the same thing (insert hair pulling and more cus words). When I explained my last phone call I was told they would escalate my call to a T3 (WOW, what does that mean?) and if I don’t hear back in blablabla, it goes on! (I was told call centre is new and is contracted out)

So today I thought stuff the call centre I’m going in! I headed to Lt Malop Street office and this is the sad part. I was greeted by two lovely ladies and I explained my circumstances. I was getting a little flustered, not bad because it takes a bit to make me blow but it hit me when one lady said my story was just one of many. (Insert tears) She said imagine the participants that have to represent themselves with their own disability?

OMG I’m struggling without a disability how on earth are they coping? This then lead me to what about other parents who’s children’s needs are much higher than mine and whom struggle to care for their child let alone ring an organization over and over again to be told to jump in the que. The list could go on for people in much worse situations than me. But how can I help, what can be done?

I have no clue! This is why I am so mind blowingly frustrated!

But tonight something weird happened…….. My phone rang, telemarketer you think? It is dinner time ;) No it was staff from the Local Member of Parliament wanting to discuss community issues.

When it’s meant to be it will be. (insert thank you prayer hands)

If you or someone you know are struggling with NDIS and need help you can speak to your local member or you can speak to staff at Rights Information and Advocacy Centre (RIAC) it is a not-for-profit organisation that builds the capacity and wellbeing of individuals, families, carers and communities through advocacy and support services.

Thanks for reading

Jess xx