My NDIS Journey

Friday, January 17 2020, 5:29PM

September 25, 2013 is the date I had my stroke. Since then I’ve had three TIAs, been assessed as never able to work and then had a PFO closure.

I’d read lots of media reports about the nightmares people have encountered when trying to access the NDIS. I’d briefly looked at applying but had always been put off by needing to include all medical and rehabilitation reports. I was never admitted to hospital and never attended rehab so had thought, “What’s the point?”, and put it in the too hard basket.

In early 2019, I attended an art workshop run by Art Access through the City of Casey. Part of the day involved getting art funded as part of your NDIS. The first question asked was who receives NDIS funding. I was the only one who didn’t. After the session the Art Access Intake/NDIS Coordinator asked why I wasn’t receiving funding. I explained the situation and she said though she hadn’t met anyone in a similar situation she thought it was worth me applying and if I had any questions regarding the process to contact her.

Here is the diary of my journey to NDIS funding approval. I hope that it helps others to take the plunge and apply.

17.04.2019 - 16.01.20

29.04.19 I’ve sent an email to the coordinator at Art Access giving her a bit of my background and letting her know what I have in terms of medical reports and to get her opinion on whether it is worth putting in the effort to apply. The only ‘report’ I have is the one from my MRI and CT scan confirming I’d had a stroke. The neurologist I did see passed all care onto my GP after about 18 months. I also have a letter from my super fund from when they confirmed that my claim for TPD had been accepted. Her reply back doesn’t give me much hope as part of the response is that, ‘It is important you have medical reports speaking about how your ‘disability’ has affected your day to day functioning.’ Some optimism is returned with a comment about being happy to discuss it further with me.

21.06.19 We’ve been away for two weeks so haven’t done anything except think about what to do. I don’t handle stress very well anymore and I’m finding this thinking is stressful. It would be so much easier to forget all about it but this is rationalised by the thought that getting access to house cleaners and a driver would be so helpful and take some of the burden off Nick.  The City of Casey, which is the municipality I live in, is hosting an NDIS provider information session so Nick and I decide we’ll go along and see what we can learn. We get to speak to people from the NDIA as well as actual providers. At each stall we stop at they ask if we are looking for our son or daughter or elderly parents. This assumption leaves me feeling even more despondent about our chance of being accepted. The people at the NDIA don’t give me much hope when they tell me they have never met anyone like me (they mean as in my situation) and that medical reports MUST be provided.

I’ve decided to stop wavering and just go for it as, really, what have I got to lose? I rang the NDIA to learn more about the process and the person was quite helpful and has started ‘the process’.

27.06.19 Forms have arrived and I have made an appointment to see my doctor. I ring my neurologist’s room and I now need to send them an email requesting a copy of what he wrote regarding my claim for TPD.

19.07.19 My access request has been sent. Supporting my claim are: Supporting Evidence form completed by my doctor; copies of letters/reports written by my GP and neurologist when I was applying for TPD, TPD approval from my superfund; MRI and CT reports. 

25.07.19 Receive a letter from NDIA telling me they are waiting on my supporting evidence so ring up and get told to resend it. Am told I should not have used ‘snail mail’ and should have emailed it through. Why provide a mailing address as the first option for returning the form if you don’t want people to use it?

14.08.19 Receive a letter from NDIA confirming my request to access NDIS

29.08.19 Receive a letter from NDIA confirming my request to access NDIS. Each time I see an envelope with the NDIS logo on it my heart beats a bit quicker.

28.08.19 Today I received a phone call from someone who is assessing my claim. After answering his questions he told me he was glad he had called as it had given him a much better picture of the ongoing effects of my stroke.

Not sure if he’s setting me up for a knock back as his last words were, “If you are successful you will receive a letter in the mail and if you’re not successful then you will receive a phone call.” Think I’ll be on tenterhooks each time the phone rings now.

 05.09.2019 Another phone call trying to quantify my sensory overload. Questions like how often a day it occurs…minimum/maximum. My issue with a question like this is how do you give a complete answer when you build your day trying to avoid situations that bring it on? So, whilst my minimum is probably 4 to 5 times a day, and that’s without stepping foot out the door, what would it be if I tried to do all the things I did pre-stroke? Probably once a day but it would last all day!  I was able to provide an example of how it was set off the day before, whilst on a walk, by a lawn mower and how making the bed can set it off as well as send my balance elsewhere. At least it wasn’t just a ‘no’ from the NDIA and they are trying to verify things. Again, I got the message re a phone call will be a knock back and a letter means I’ve been approved. It was the same person that spoke to me the previous week and I got a real sense of him trying to be helpful and very empathetic for which I’m very grateful.

Approved!! 09.09.19 Today I got a phone call from the Local Area Coordinator’s office wanting to set up a meeting to develop my plan. To say I was shocked was a bit of an understatement. They didn’t realise I hadn’t been notified that I’d been approved. They also mentioned that they often call people before they receive their approval letter.

There’s a feeling of elation but also a bit of anxiety. They’ve advised me to get up to date reports etc which is a bit hard when you don’t see anyone but we’ve made it this far so we know it can be done.

24.09.2019 I feel very fortunate as today the person I met from Art Access came to my home to provide guidance for when I’m writing my personal statement and goals. I scheduled the meeting so that Nick could also hear everything which, again, was very useful as he is attending the planning meeting with me. She asked questions that fleshed out responses and also made suggestions as to what we should be seeking funding for. The big thing is making sure that what I am requesting is necessary for my health and has benefits related to my disability and not just something I would like to do.

As someone who likes to research and know things before heading into meetings Nick and I spent a bit of time looking at what was available on line. We didn’t just use the NDIA website but also accessed various providers etc. and the information they had.  It also meant we were able to use the NDIA terminology in what we were writing. This research was also helpful as it helped to clarify our understanding of what we could ask for and what to expect.

03.10.2019 Today we had our Planning Meeting. Nick has written a Carer’s Statement that we take along as well as a letter from my pilates instructor. Both my Personal Statement and the Carer’s Statement are quite confronting as there is a sense of laying yourself bare for strangers to see. I also take some of my art so the co-ordinator can see what I am doing and what I want to achieve. He makes suggestions as to what we can ask for. One thing I would recommend if you are seeking cleaning and gardening assistance make sure you make the co-ordinator aware of the size of your home and garden; once we did that he upped the number of hours he requested for these services.

16.01.20 So, I have been accessing NDIS for a couple of months now. We decided to self-manage and that seems to be going okay. We’re still finding our feet in terms of working out what providers to use as I have had a number of bad experiences with transport workers and have not been able to find an OT to suit my needs but it’s early days and I expected there to be some hiccups. Having said that it is so good to know that the house is getting cleaned and that I am not reliant on Nick having to take me everywhere. I found applying for NDIS quite confronting; at times my anxiety led me to say let’s just stop and not worry about it but I’m glad we kept going as we are experiencing some benefits and they have made all the effort worthwhile.