My thoughts on our NDIS funding review outcome

I’ve just emerged from a bit of a funk. I didn’t realise why I had been feeling so blah for a couple of weeks until I started to feel a bit better. Once out of the funk I had more clarity to look back over the preceding weeks and realise that it was prepping for Braeden’s NDIS review (funding review for our overseas friends) that had me feeling low. I’m such a positive person so it takes quite a bit to knock my positivity but this isn’t the first time I’ve felt this way when preparing for a review. I wish the NDIA realised the negative toll the reviews and planning meetings have on carers. People who are already tired, feel that they are arming for battle and the usual admin workload is doubled.

Photos peppered throughout are of Braeden living his best life thanks to our previous one to one support.

The toll of NDIS reviews and funding meetings

I’d like to preface this blog with an acknowledgement that Braeden leads a full life thanks to the funding he receives from the NDIS. I’m also incredibly grateful that we live in a country where this funding is available. I know that many of our overseas readers struggle to get any funding support for their loved ones. I just wish that it didn’t require a battle every 12 months to get the funding Braeden needs to meet his goals. I feel battle weary.

Preparation for our NDIS review

This year I started preparing in July for an anticipated August review (the date Braeden’s plan was due to end). I waited for the phone call requesting a meeting and it never came. My plan manager advised that lots of funding packages were being rolled over without a meeting and if the end date came and went then that would probably signal Braeden’s plan had been rolled over. I felt like celebrating when the plan rolled over in August but then I received a call in early October from an LAC (local area coordinator) wanting to make a date for a chat about our review.  She promised it would be a “light touch review”, just to check in to see if we were happy with our funding and she’d make it as easy as possible. When we had the phone review there were a few red flags that it wasn’t going to be as “light touch” as promised. Our LAC was lovely but I could tell she already felt she would have to justify many of the things we were requesting to a higher power. I hung up the phone feeling less than confident. A few weeks passed and I received another call from our LAC asking for more information and that’s when I went into battle mode. I wrote an impact statement, I provided details justifying our need for more that the maximum of 28 days of respite and further reports. We also asked Braeden’s respite house manager to write a letter about Braeden’s needs at respite. And then we sat back and waited. The writing of the impact statement, which detailed all we do for Braeden and the other family members we care for, combined with a particularly busy period left me feeling really low. There’s nothing like laying out every single struggle in an email to remind you that indeed life is challenging. Mostly I am too busy ‘doing’ to dwell on anything, but justifying the need for the funds means I need to lay our life bare. While it no doubt looks glossy from the outside, keep in mind you see our highlight reel. I like to focus on the good stuff so it’s always a challenge to drag up the tough bits.

NDIS outcome

We received our review outcome yesterday and while we have a good funding package it is clear that the NDIA has issues with Braeden’s level of funding. It was suggested verbally, and through the way he has been funded, that they would like to move him away from one to one support. While I understand this from their budget perspective, it goes against the original motto of the NDIS which was for participants to have “choice and control”. It also doesn’t allow Braeden to work towards his personal goals. It irks me that they want him to return to a day program. We tried that for over seven years and didn’t find that Braeden progressed with his goals. In the last two years he’s achieved so much more personally and physically. Each physical gain and communication gain will eventually mean he will need less support. Yes, it will take a long time but our guy still hasn’t reached his peak and we want to help him get there but we need assistance to do that. It takes a village.

The reasoning they provided for Braeden being encouraged towards a day program setting is for his socialisation. I know Braeden has an incredible social life between the community he has built all around Sydney and the stays at respite, he’s surrounded by engaged people. Braeden’s support workers often comment that everyone knows him and engages with him.

The disregard for carers/parents

What irks me about the way funding works is the total disregard for carers and parents. We requested funding be provided for more than the standard 28 days of respite due to Braeden’s poor sleeping habits and because both Hubby and I need to travel for work. The higher level of respite was refused. While I understand that funding is about the individual with a disability, there should be some consideration for the people supporting that individual. The people that are in fact saving the government a whole bunch of money by happily supporting Braeden at home. All we wanted was to be supported so we don’t burn out. In our impact statement we mentioned Braeden’s nocturnal shenanigans and the fact we rarely get a full night’s sleep. We even included the sleep diary which is kept by staff at his respite house, which was proof that we are not exaggerating Braeden’s sleep disturbances. If the NDIS is based on an insurance model, they should insure that their main budget-savers, unpaid carers, are taken care of so that over time it doesn’t cost them more.

I pointed out the irony that the NDIA would like Braeden in a group setting at a day program due to their desire for him to have more socialisation, but they refused to fund him being in a respite house where that socialisation occurs.

We have not asked for expensive equipment, assistance with car modifications or house modifications. The main requests we had in Braeden’s review was to have one to one funding so he can achieve his communication goals and fulfil his desire to have a varied routine tailored to his interests and needs. We also requested considerable respite because after 27 years of disturbed sleep, we kind of figure it’s okay to put our hand up and say, “we need support to keep supporting Braeden.”

I know we are not alone, I know many of you are struggling to get the support you need and funding for basic equipment.

Ammunition for next year’s review

I’m out of my funk, fired up and ready to be better prepared for next year. I’ll be keeping a diary from now on and get documenting everything that I think proves that our requests are reasonable and necessary. Every parent wants the best for their kiddo and we’re no different. In fact, in many ways I feel Braeden is left vulnerable in the future if he isn’t armed with the skills to communicate his needs and to assert his independence.

I would love to hear from anyone that has advice on what proof of need actually works. Are there specific reports or documentation that you have found works? Please let us know in comments or over on our Facebook page.