To Whom It May Concern,
My name is Ricky Buchanan, I am a 44 year old NDIS recipient living in Melbourne. I have had significant problems with planners apparently not understanding that as someone who is bedridden and homebound I have needs which are different from most disabled people’s needs.
General points about planning:
I want the Committee to get an understanding into how unimaginably stressful planning is - the stakes are too high. Planning determines so many things about my life and NDIS has absolutely control. This can never not be terrifying for anybody who is severely disabled
If anything goes really wrong - like a gap in my plan - my worse nightmare is that I loose my remaining independence and in the worst case would have to move into a hospital or aged care facility. This problem is especially acute because NDIS usually don’t do back-pay if you have to pay for something out of pocket because of a plan screw-up. For those of us on a disability pension there is financial disaster around every corner and somehow all the liability has landed on our heads
Because everything is SO high stakes, the emotional toll planning takes on a person is enormous. The stress is enormous and unrelenting … In the best case it would be for perhaps 3 months between preparing for a plan review, having the review, and waiting for the result. But right now I started preparing in January for my most recent plan review and the AAT process is still playing out, so it’s been this level of enormous stress for more than 8 months and no end in sight. This is just destroying me
We need more transparency from the NDIS. Tell us what funded supports and services do need evidence, and what doesn’t. If evidence is needed, explain exactly what that evidence should and should not contain, who it should come from, how much to provide – and give us this information well in advance of the planning meeting so we can prepare in a way that works for everyone. We’ll all be much less likely to seek reviews if we can get it right from the start. I’ve had things funded which I didn’t even really ask for but which were suggested at the planning meeting by my LAC and for which no evidence is supplied, and also had things denied for which I had supplied lots of high quality evidence - there’s no consistency
I know what social and economic participation looks like for me. It’s different for me than for other people because I am unable to sit up and therefore can’t use a wheelchair, leave the house, etc. but I feel like a blanket ban (ie: Operational Guidelines saying “Don’t fund X”) was applied to me, without regard for my very unique circumstances
I have no sense of long-term security, and can only hope for short-term security with a good NDIS plan. Even if everything goes perfectly and there are no problems, you have to do the whole thing over again next year so you can never feel safe or secure for long
I am reaching the limits of how much stress I can handle now. I am randomly crying at the smallest things – this isn’t me. I got an email from the NDIS yesterday and as a result didn’t sleep last night
Consistency is really REALLY lacking. Some people can get funded supports with no trouble, which other people in very similar circumstances are not approved for the same thing
I am concerned about some requests having no chance of being approved without going to the AAT, but having good chances there. I was told at my RoRD teleconference that I had the highest quality evidence for my requests but they still can’t grant those things without me going to the AAT because even though the legislation says they’re OK the operational guidelines say they aren’t
Every stage of the process is unpredictable and subject to change. It is impossible to prepare for anything practically or emotionally
Everyone you speak to tells you something different, or even the same people tell you different things on different days. Not just about small things, but about really major fundamental issues
For some people, like me, guaranteeing a minimum annual package would or funding levels would provide enormous peace of mind, and an extremely valuable sense of security
It would also allow me make plans for more than the length of one annual plan at a time
Points specifically related to being bedridden and homebound:
It really seems like NDIA are failing to understand what “bedridden” or “homebound” means on a really fundamental level. I can’t sit in a wheelchair. I can’t travel in a car. Even if I am taken somewhere by stretcher ambulance (which is only an option to go to hospital and back because that’s all the stretcher ambulances ever do) I have a diminished level of functioning for up to six weeks afterwards, so it’s technically possible to do it but not actually practical because it reduces up any quality of life I have for such an extended period.
These things mean I can’t attend ANY mainstream service - I can’t go to get splints fitted, I can’t go to a medical specialist unless it’s so urgent/life threatening that it’s worth 6 weeks of extremely severe symptoms and significantly diminished functioning, I can’t go to a class, I can’t join a club, I can’t visit a friend, I couldn’t even go to my grandparents’ funerals. If the thing I want to do can’t be done by either home visits (someone coming to me) or online, then it just can’t be done.
I have explained this in my plan reviews and my RoRD at great length because I know it’s unusual and therefore people have trouble understanding it. I’m good at explaining it to people - outreach about being bedridden/homebound is a lot of what I do online.
At my final RoRD teleconference to receive the results of my internal review, one of the things I was told is that one of the reasons NDIA would not fund art therapy was because I could use my core funding to use a support worker to take me to a mainstream art class.
I explained during the teleconference that this was nonsense - that I could not attend art classes because I can’t travel and there are no extant accomodations that would allow me to do so (there are also other reasons it is nonsense - art therapy is much closer to counselling than to art class, but leaving those other things aside for now). Apparently my explaining it was nonsensical did not matter to the outcome at all.
Then the RoRD officer followed up by emailing my LAC a list of local art classes that they suggested I might attend, having emailed the providers to ask if there was “bed access” which they implied involved my providing a bed (which it seems they thought I could bring with me?) in the classroom. This is an imaginary nonsense which makes no sense when given even minor thought - the RoRD officer had been directly told that I could not travel and could not attend a class to start with. Even if I could travel, how on earth would anybody bring a bed with them to class? I can’t imagine any support worker has a car that would fit a bed into it. How would you get a bed through the door of an art class, even?
This level of complete and utter misunderstanding of my most basic needs - to have services provided to me in my home - makes it very hard to trust that NDIA understands me at all, and very hard to trust that NDIA will fund my needs. If they don’t even understand or believe that I have these needs, or have the faintest idea of what the needs entail, how could they possibly be in a position to accurately judge whether my needs are reasonable and necessary?
Thank you.