Getting the participant experience right

Gill Shaw: So this next question actually, I've got here for probably Dougie, Lisa and Bruce to answer.

So I'll probably, I'll go to Dougie first.

So, and this touches on the budget issues that were outlined in Bruce's speech.

So how do you propose the three step process can work with setting a budget? Surely it's the same line by line package, albeit separated from the first step.

So that's a question online.

Dougie, did you wanna start answering this one and then we'll throw it to Lisa and then Bruce.

Dougie Herd: I can start if you wish.

Hello everyone, my name's Dougie Herd.

I'm an NDIS participant.

I'm also chief executive officer of an NDIS provider, like the support coordination and plan management to about 300 participants, mostly in Canberra, but also some in the New South Wales.

Throughout the review and our meetings with participants, family members, and in the course of my work, supporting those 300 participants to go to NDIS, reappraisals, variations, reviews, extensions, auto extensions, whatever the current word is for getting what we call at the moment, a plan that anyone who's ever seen the plan later knows is not a plan, it's a budget allocation with some boxes that need explaining.

The process has become traumatic.

That's a word that was given to us in our first three day session by parents.

People feel traumatised by it.

I recall during a period when something called independent assessments was discussed, making a contribution to the work of a joint standing committee, in which I expressed my personal opinion that I thought independent assessments was the wrong way to go, which is my very considered understatement.

But there was a gentleman even older than me who was unable to complete his evidence to that review by the joint standing committee because he had been so traumatised by the whole idea of it and by his own experience as an NDIS participant that he broke down in tears.

And something is wrong with a status quo that turns human beings into crying wrecks, just because somebody devised and implemented a process that makes them feel powerless, the status quo therefore isn't acceptable, so what is? And I think it's transparently simple, somebody, in this case we are suggesting an NDIA agent, probably an employee, sits down with a human being and has a human being's conversation and begins with what are your support needs? Let's work that out, make sure you've got all the evidence, the opinions, your own expertise to tell you, and then we'll go and work out what we think that might cost in the way of money.

Because money matters.

Now I think that's dead easy or straightforward for somebody like me, a quadriplegic.

Transparently, I'm sitting in this wheelchair as a consequence of an assessment done by somebody connected to the NDIA who said that quadriplegic needs a wheelchair.

Well there is no surprise about that.

Most people, however, have no idea that apart from being unable to walk, us quadriplegics can't pee and we need our bowels evacuated and for somebody to get our shoes on, our trousers and all those other things that are called just getting up in the morning.

And that's something that requires a bit more deep thought.

We need to make sure that that sensitive conversation can take place in a trustful environment, that people understand what the reality of the needs are, each and every day of each and every part of our lives.

And then can work out how we might have a budget that will work for us, that we can then talk about how we mobilise it in our lives with greater flexibility.

But here's the thing most people will probably understand.

If you're a quadriplegic inside the NDIS, you're one of the most straightforward participants you will ever see.

And the more you get away from something as transparently obvious as the hairy Scottish guy, the more difficult it becomes to have a sensitive conversation in which people with a cognitive disability, an intellectual disability, people who have been traumatised by past practise, people with a psychosocial disability, episodic occurrences of the disability.

So we need to make sure that that sensitive conversation takes place in the context, not just of the fact that we have a disabling condition, although we may not have a diagnosis, who cares? Diagnoses are just labels.

What matters is whether or not whatever you've got stops you getting outta bed in the morning or engaging with your peers or applying for a job or even getting to a job.

Those are the things that matter.

You don't have to be called a primary disability or a secondary disability.

Who knows which is which and who cares.

That process needs to be done in a way that is sensitive to who we are as individuals so that we can build around the people, the resources they need, to be able to live a life to function better, to be out in the community, to engage with their peers, to be supported by their peers.

And that that is simply the first stage in what we still call the participant pathway.

Well that pathway has never been right.

It's not terribly smooth and sometimes people get lost and fall off it and feel incapable of getting even past the front door of somebody saying, what do you need? I think that's what we're going to recommend to government.

The last thing I'll say, 'cause I'm taking much too long 'cause everybody knows I talk too long is this, is that the critical thing to getting this right is that the participant experience, their family experience and the knowledge, insights and much broader experience of what we call our disabled persons representatives, organisations, advocates, and others are part of the design, testing, evaluation and implementation process.

So that it's transparent, it's obvious, there's no surprise we know what's coming.

And more importantly, as a big community, we say, you know what, this feels right, let's do it.