A guest post from an angry NDIS participant
The NDIS is a tangled web. I often describe it as like dealing with Centrelink, Telstra and the tax office all rolled together – a frustrating bureaucratic system where you can’t just contact one person and get a straight answer. I sometimes feel like you need a university degree just to understand what funding you have and how you can use it.
I’m Deaf. I have excellent English and comprehension, but even I opted to be NDIS Plan Managed because I wanted this all to be someone else’s problem – it was a bridge too far for me to try and work it out myself, on top of the daily tiredness that most people with disabilities feel from scaling the barriers we hit up against every day. How must people who have English as a second language feel, or people with disabilities that affect cognition, trying to navigate a scheme that I and so many others just cannot work out?
The first hurdle I faced was having to prove I needed the support in the first place. I wear a Cochlear Implant, and on a good day – if the environment and lighting is right, the room is quiet, and the people speaking to me aren’t accented/bushy bearded/chronic mumblers – I can hear and speak really well. I can hear around 75 per cent of speech, and a tad more with the aid of lipreading.
However, once the environment changes – or I’m tired or I have a headache or your accent is unfamiliar to me – my capacity to understand reduces significantly. Sometimes to zero. My audiologist gets it. The services I use (providers of Auslan interpreters, Live captioners) all get it. My closest family, friends and colleagues get it. But now I had to explain it to a Local Area Coordinator who didn’t come from a background in disability.
Having heard all the horror stories, I was prepared to show up presenting myself on my worst ‘zero capacity’ day. I had to advocate hard for what I needed, but I got my NDIS plan and it met my basic needs.
Then came the announcement about Independent Assessments.
The plan is that there will be independent allied health professionals, not previously known to you, who will assess your functional capacity – so not what you can’t do but what you can do. This will take between 20 minutes and three hours. You need to have someone who knows you well attend the assessment and be interviewed, to back up what you say about your function.
Once the Independent Assessor makes the call on how functional you are, you’re then issued with a funding amount to spend on your access needs for your entire plan life. You get the funds given to you at different intervals and you need to budget for the support you need.
The clincher though: you cannot dispute the results of the Independent Assessment if they get it wrong.
I have so many problems with this. One is that, of the types of allied health professionals listed – seven altogether – none of them know my disability, and nor have I had any interaction with any of them.
Who are they to come and visit me for 20 minutes to three hours and judge how ‘functional’ I am? They may catch me on a good day, or a bad day, and this has the potential to make or break whether I get access or not.
My second problem is the interval payment – why do I have to save for access and support needs the way I might have to save to buy a handbag? For example, I can’t predict when I’m going to get sick, need to see a doctor and need hours of Auslan interpreters to help me with access – what if I run out of funding that month? Is it reasonable to expect me to contact the NDIA and go through a rabbit hole of processes to try and get more funding released, all while I’m at my worst capacity level and need access right at that moment?
Another problem is that I still need to run around and get my own reports from my own medical professionals to get access to the scheme in the first place. I still need to advocate my case, and now I need to go through the process of ‘proving’ my disability again with an Independent Assessor. Why? And why do I need someone to be with me to make sure I’m telling the truth? Is there a reason why I – and specialists who’ve known me my whole life – won’t be believed?
The worst part: if they get it wrong, I cannot contest their assessment. Where is the justice in this? What are MY rights?
Who are they to come and visit me for 20 minutes to three hours and judge how ‘functional’ I am?
I got angry about it, but I also decided that I would do the right thing and attend the consultations or respond to the consultation papers. Surely, I thought, when the NDIA hears about all the problems with the Independent Assessment process they’ll review their decision. I was certainly not the only one with these concerns.
I attended the consultation online, to answer questions about the proposed changes. However, what became quickly clear was that the NDIA was only interested in asking specific, narrow questions: about how they can make sure that people with disabilities get the message and understand the Independent Assessment process, and how they can get the message out further in the community.
There was not one question about what we thought about Independent Assessment, the impact on us as participants, or any concerns we had about the process itself.
It was clear that the decision had already been made.
I tried to include my concerns and feedback in the chat box anyway, and the response I received – on repeat after every comment I made – was “we are ensuring that all feedback is documented and sent to the NDIA. If you have a question or comment during the session, please type it here.”
The NDIS was set up to enable us to have choice and control over the support we receive, so that we’re able to live an ordinary life. Independent Assessments are putting complete control over my ability to live an ordinary life in the hands of seven groups of professionals that I’ve never had contact with – and providing me no recourse if they get it wrong. The possibility of them getting it wrong is extremely high.
I’m the best judge of my function and capacity; no one knows what I need more than I do. But you don’t even have to trust me – instead listen to the specialists who’ve known me my entire life and who understand my disability.
It is time for the NDIA to get up on the balcony and look at what they have created and how far away it has moved from its original vision of empowering people with disability to have choice and control.
Independent Assessments are absolutely appropriate in some cases, but a blanket rule for everyone will create more problems that the scheme doesn’t need.
It is a lot more worthy of respect – in fact it would show great and daring leadership – to retract, apologise for getting it wrong, listen to the participants and make changes to get it right; rather than powering ahead with something that is going to cause far more pain.