Thank you to everyone who took the time to comment or send me a message about my last update. Yes, we are all very proud of Alex and have hope for his future now. What we don’t have is faith that the NDIA will actually make that future possible.

Dealing with the Devil

My dealings with the NDIA on behalf of Alex can be summarised in one word: traumatising. There have been far too many occasions over the last couple of years where a phone call or email from them has reduced me to a shaking, anxious mess. I then spend two or three days where the only things I’m capable of are sleeping, or watching Netflix. My nervous system simply cannot take any more arguing, any more bureaucratic hurdles, or insecurity about Alex’s future. It has taken me two months to be able to write this blog post, due to the anxiety it stirs up!

I know that until Alex turns 18 (or quite possibly longer), we will have to fight for every single thing he needs. It’s not just one fight for one thing at a time, but constant fighting. It can take years for the NDIS to agree that the requested supports are necessary, and then in the following plan they can take it all away and you start that same fight again. There are no guarantees that what is considered adequate today will be considered adequate in the next plan. The reverse is also true – what was considered to be NOT reasonable and necessary will magically become reasonable and necessary with media pressure, or appeals to the tribunal.

There are far too many families in Australia who are in exactly the same boat. Families who are asked to provide reports for every single plan. Those reports can easily cost from $200 to $1000 each (funded by the NDIA), and are expected to be provided to the NDIA for every review, by every therapist. Reports from speech pathologists, occupational therapists, psychologists, psychiatrists, doctors, physiotherapists, dietitians – anybody who is involved or needs to be involved with the participant.

The NDIA picks and chooses what information they will read, acknowledge and agree to, within each individual plan. Many tribunal cases are heard where the reports have been provided by professionals involved with the participant, yet the NDIA planner decided that they knew better than the therapist. Which leaves us to ask, “why on earth do we need to provide these reports if you’re just going to ignore them anyway?”.

Alex has had many reports submitted to explain to the NDIA what his needs are, and what therapies are required to help him thrive. His planner didn’t always bother reading them, so upon appeal we would get an entirely new plan issued even though we had the same reports. With a change of planner would also come a change of what is funded – sometimes it seems like they just make it up as they go along!

So yes, we are still battling. And probably always will be, as Alex will always require intensive care. He will never be able to live by himself, drive a car, go shopping, manage a bank account, or catch a bus by himself. Even if he is taught the individual skills to do all those things, he would simply be too vulnerable, as he would be easily taken advantage of by others.

After many battles, which even those who are familiar with the NDIS’s nefarious ways have found to be absolutely incredible, Alex is finally back in Bendigo.

Yes, Alex is in Bendigo!

We were put in touch with an absolutely awesome organisation who have bought a house for him. Yep, I said that they (Simply Helping / One Doorway) have bought a house for Alex. They bought it within two weeks, then modified it to suit him, set it all up, and employed staff. They are buying a car to be used by the support staff to transport him. We were getting whiplash from how quick it was all moving – probably because the NDIA weren’t involved!

Prior to Simply Helping’s involvement, there had been a lot of discussions about Alex relocating to Bendigo, various people looking at rental options, etc. But the wheels of bureaucracy move very slowly at the best of times – with COVID they are almost at standstill. If it weren’t for Simply Helping, Alex might still be in Melbourne!

He has been in Bendigo for two weeks now, with Irabina therapists in attendance to train his new support staff. More staff are needed, so if you are local to Bendigo or know anyone who would be an awesome carer for Alex, then please let us know!

As expected, there have been some behavioural flare ups. We hope that these will settle down as he gets used to his new environment and new carers. The thing we have enjoyed the most is actually being able to see our son again! We are able to visit him and spend time with him, getting to know each other all over again.

A lot of promises have been broken, and Alex’s rights and needs have been stomped on repeatedly. Our wishes as parents have often been ignored or brushed aside, and we are still fighting those battles. More on that next time!