January, 2020 – it has now been over 12 months since the NDIA sent Alex to live 184kms away from home to receive full-time therapy. It has been 9 months since the NDIA was supposed to implement a capacity building plan to reintegrate Alex to his home. Alex is still not home, and he is about to be moved without our consent.

Background:

In December 2018, as a result of conciliation meetings through the Administrative Appeals Tribunal, the NDIA stated they would:

• Pay for therapy prior to, and for the 3 months of, an intensive capacity building program at Irabina Autism Services Melbourne.
• Pay for short term accommodation support whilst Alex was at Irabina for therapy.
• Pay for 8 hours of flexible supports upon completion of intensive therapy – to allow Alex’s needs to be reassessed after the initial 3 months of therapy, and a new plan to be formulated.

There were a number of shortcomings and issues with this plan which we raised at the time, only to be reassured by our Legal Aid (VIC) lawyer that ‘the NDIA won’t just leave him sitting there’. Which is exactly what has happened – he’s been sitting there since April 2019. There was also no funding to cover costs incurred by his family in visiting him. It has been up to us to fund petrol costs, very occasional overnight stays, time off work for hubby, and carers for our other children, so that we could visit Alex.

Alex was supposed to be living at Villa Maria Disability Services which was in close proximity to Irabina Autism Services. Unfortunately, Villa Maria decided (with two days to go) that they would not be taking Alex after all and pulled out. There were no other options to house Alex, so Irabina’s Executive Board decided to renovate several rooms for Alex at their facility so he could stay there. Irabina do not provide accommodation, only therapy, but they knew that if they didn’t make this offer, Alex would not be able to receive the therapy. Alex has been living at Irabina since December 2018, with Irabina overseeing the hiring and training of his support workers, as well as providing therapy and looking after all his needs.

The NDIA agreed quite readily to this. In March 2019 they realised that they could not physically pay Irabina due to the way that Alex’s plan had been set up, so they issued a new plan to ‘fix’ this. That new plan had a calculation error however, and resulted in a shortfall of accommodation funding since April 2019. Irabina are still waiting for payment of the debt owed by the NDIA. Incidentally, so are Muscular Dystrophy Australia who provided the accommodation prior to Alex being relocated, and Kensey Care who supplied the support workers who looked after him. These bills have been outstanding since December 2018 – apparently they are ‘in the NDIS system’ somewhere.

We waited for a planner to contact us to review Alex’s plan and determine a path forward. Given that therapy was due to finish mid April and Alex’s plan was only providing accommodation until then (although due to expire in mid May), we expected contact by mid March at the latest. We waited. Mid April we received a call from Melissa from the NDIS to say she was our planner and was going to organise a plan review. We had a brief chat with her, and waited. Early May we still had not heard anything further, so we started making phone calls as did Irabina.

On 9th May we received a phone call from Bryony who said she was our new planner. (No idea what happened to Melissa). She was doing up a one month plan extension as of that day, to give her time to catch up on our case (it had been dumped on her desk that day). Plan #8 for Alex was issued from 9/5 to 8/6/19.

On 7th June we received notification from Bryony that she was issuing another one month extension. Two weeks later, we were told that the NDIA would like a case conference with everyone involved. Given that the only people involved were us, the NDIA and Irabina, we weren’t sure who else they wanted to drag in. Turned out it was any other government department who they were hoping could provide funding so they wouldn’t have to. That didn’t work.

We met at Irabina with Bryony on 29/7 for our review meeting and discussed Alex’s progress, the proposed transition home plan (including training of staff and family), and requested home modifications to ensure Alex’s safety on his return home. Another one month plan extension was issued while Bryony was doing the review. On 5th September we finally received an actual plan.

This plan did not address any home modifications at all. This plan did not provide funding for training of support workers or family as proposed by Irabina. It did not provide funding for whilst Alex was still at Irabina, nor for the amount of therapy he was still receiving. Basically – we couldn’t bring him home, but we didn’t have the funding for him to stay where he was. We asked for a review.

The review was done amazingly quickly (for the NDIA). The decision was made that full funding would be given for the recommended training (yay). The NDIA also offered 24/7 support staff for six months to help Alex’s transition home go as smoothly as possible (wow). We were told that the review could not address home modifications however, as ‘no actual decision had been made on the home modifications so therefore no review could be undertaken’. A new plan was issued 3rd December 2019 (#13) which provided training costs and support staffing once home, but no accommodation for Alex in the interim. We were referred back to Bryony for home modifications.

There are a number of issues going on regarding the home modifications which could easily fill another blog post. Let’s just sum it up by saying that we’re not even at the point of being able to get (another) quote with the current plan.

In the meantime, other issues have cropped up. One is that the new requirements for Behaviour Support Plans (BSP) mean that Alex’s BSP needs to be completely redone. BSPs are meant to be situation specific, so he needs to have one that is suitable whilst he is at Irabina, but he also needs to have one that is for when he is at home. We have no idea when that will be, or what his behaviours will be then, so that makes it difficult.

There were also some murmurings about the suitability of the accommodation that Irabina are providing. Bryony told us in July 2019 that it was not the responsibility of the NDIS to pay for Alex’s accommodation. This seemed rather ludicrous given that it was their idea to send him there and they said they would pay for therapy and accommodation. Their efforts to have other departments fund the accommodation failed however.

Irabina are keeping Alex safe and secure, and he is happy, healthier than he’s ever been, and thriving. But today we were told by Bryony that apparently both the NDIS Quality and Safeguards Commission, and the Department of Health and Human Services (DHHS) have decided this accommodation is not suitable for him. We are still waiting to see the actual letters. We have been asking for the support to bring Alex home for the last 7 months, and now we’re being told that he will have to be moved.

Everyone who knows Alex and has worked with him, knows that this move can quite easily undo all the good work that has been done to date. The amount of issues involved in this move are mind boggling, yet the departments aren’t concerned by that at all – only by their bureaucratic ‘tick boxes’ that regulate who can provide accommodation.

Bendigo does not have any options for respite for children like Alex, even with all his improvements. Just over a year ago, suitable accommodation could not even be found in Melbourne! Alex has turned into yet another statistic – a number on paper that must be made to fit into the correct box, regardless of the consequences.

I am seriously at the point where I’ve had enough. My PTSD flares up whenever the NDIS comes up with another useless plan or beyond-belief phone call. Hubby was retrenched on 1st August 2019, and finding a job that will also allow him to help with caring responsibilities has been impossible. We are constantly in a holding pattern where we don’t know when we will be able to have Alex home. We know that the transition home is going to be tough for all of us, not just Alex. Yet not only has there been no support for this from the NDIS, but they have actively put roadblocks in the way.

There have been stories in the media of how more parents have been relinquishing care of their children since the NDIS has come in. In October 2018 the NDIA suggested that if we couldn’t cope we should look at putting Alex into state care. So hearing of greater rates of relinquishment comes as no surprise at all. For our own sanity and the sake of the rest of our family, it is certainly looking like relinquishing is going to be the only option we have left.