Program: Stroke survivors in conversation with NDIS Minister Bill Shorten

Tegan Taylor: Norman, there's been a lot of changes to the National Disability Insurance Scheme over the last few months, and that's come off the back of an independent review that was delivered last year. 

Norman Swan: Yeah, they changed legislation this year. I mean, this is a world leading program. There are very few parts of the world which have got anything like the NDIS, and it went off the tracks and was becoming unaffordable, and people were not necessarily getting therapy or help that they needed, or probably getting misled by some providers about what they should have, even though they had choice in the matter. But it's a relatively recent program, it was only launched in 2013.

Tegan Taylor: Yeah, it's sort of surprising it's become such a stalwart, and it's so important to so many families that you forget how young it is.

Norman Swan: But we've been working with two women who've had very different experiences with the NDIS. 

Tegan Taylor: Yeah, so Kylie Betts had a stroke 20 years ago when she was in her 30s, before the NDIS existed. And Gillian Coutts had a stroke about two years ago, and had NDIS support from her first day back home from hospital. But before any of this happened, they were friends. 

Norman Swan: Oh, really?

Tegan Taylor: Yeah, yeah. And then they properly reconnected after Gillian's stroke, and really found a lot of support with one another.

Norman Swan: So, they've been working with us at the Health Report, particularly Shelby Traynor our producer, to tell their stories, and you'll hear more from them on the show next year.

Tegan Taylor: But first they got a chance to chat with NDIS Minister Bill Shorten this week, to talk through the new changes to the scheme and what they're trying to achieve.

Norman Swan: And first with the questions is Kylie.

Kylie Betts: Welcome Bill. The NDIS has been transformative but complex to navigate for many people like ourselves with disabilities. I had the unfortunate experience of 12 months waiting time on my application, my case timing out, and then having to ring your office twice in tears and frustration. Given my experience of long waiting times and complex bureaucracy, what reforms should be made to make this process easier?

Bill Shorten: Yeah, I'm sorry that you had that difficult experience.

Kylie Betts: Thank you.

Bill Shorten: When I became the minister nearly three years ago, the organisation only had 4,000 people working for it to serve the needs of over half a million people. Now I can say the first reform we've got is that we have more staff. It's more like 7,000 people, but it's taken us a while to on-board, to get the money. We're talking literally about thousands of extra people. 

The second thing is that because we want to make the scheme true to purpose, we've been inundated by a lot of extra claims and inquiries, by some people who are worried they're going to lose benefits or budgets, by others who are just…frankly, some providers who are just manipulative and are going for one last round of free drinks out of the scheme before they no longer can just rort the scheme. But we must treat every proposition, every application as legitimate until proven otherwise. So that has led to a congestion in handling matters. I now get the waiting times every couple of weeks. The trend is our friend, but that is perhaps not a great consolation for you who was making a claim in the middle of all of these matters.

Gillian Coutts: Interesting, from a stroke perspective, recovery from a stroke often requires ongoing, tailored rehab. I know that I could reduce my care requirements in the future by directing more of my care packages now to rehab, but since the NDIS changes came into effect in October, I couldn't use any of my core funding to fund additional therapies. Have you considered that this might actually limit people's progress? 

Bill Shorten: Some parts of the package have extreme value to you, and, frankly, others have less value. Yeah, the laws that I just got through the parliament in August give us the legal authority now to create more flexible packages where we do a top-down assessment of you, your total needs, but then give you more choice and control, rather than micromanaging each aspect of your package.

Kylie Betts: A lot of people came to my aid; the local Brotherhood of St Lawrence, and another participant in the NDIS gave me the details of his support coordinator. Other people have to pay advocates because it is such an overwhelming process. How can the NDIS assist potential participants to navigate a process that forces you confront your disabilities and be vulnerable as a necessary part of the process?

Bill Shorten: Part of the reason why there are so many disability intermediaries, you mentioned the Brotherhood of St Lawrence, local area coordinators or random support coordinators you meet, they've sprung up because, one, the organisation was understaffed and underfunded, and, two, there's been a culture in the scheme of you get your package, it gets micromanaged each unit, and you just fight to keep your package. So it's created an adversarial approach. Not only do we want to do the assessments top-down so we can have budget planning tools, that'll take about 12 to 18 months to develop, what we also want to do is introduce navigators, people commissioned by the agency who give assistant advice, how to get the best out of your package, how to liaise with the agency and how to get the best out of the community supports that are around.

Gillian Coutts: Technology plays an important role in stroke rehab and disability support. How is the NDIS keeping up with those technological advances?

Bill Shorten: I think that's an issue of innovation, which is more than just for the NDIA, that's for the marketplace. We invest probably closer to $1.3 billion annually on assistive technology. I think there's a lot of opportunity to invest more in AT and give people more control and dignity. So we're open to people coming forward with innovative propositions around tech which means they don't need so many disability care hours and they have more independence. 

Gillian Coutts: I've had my application for a wheelchair accepted after eight months of waiting, and I'm curious whether this interview had anything to do with it finally being accepted after having such a long wait. And I guess I bring this up because you often hear that people say you've just got to contact Bill Shorten's office to move things along if they're lagging.

Bill Shorten: Yeah, well, I'm sure my office is very helpful.

Gillian Coutts: They are.

Kylie Betts: They are, I'll agree with that. 

Bill Shorten: But this is the largest personal budget scheme of its nature in the world. Every package is individual, but what that means is mistakes get made. No one in the world has ever endeavoured to hand out 680,000 individual packages, so sometimes mistakes do happen. And yes, I want to create systems where you don't need my office, we're working on that. But in the meantime, if there's a problem, we just do our very best. 

Kylie Betts: What is the reasonable time to wait for a plan review, given the participants service guarantee states that the reviews must be completed within 60 days from the day when we ask for the review?

Bill Shorten: The participant service guarantee is the goal. We're increasingly accomplishing that. The reality is that the volume of requests has in the last 12 months been, whoa, doubled. And that's for good and bad reasons. So I know that we're getting close to the service guarantee numbers, I think the agency has been improving, but I understand if you're waiting for a decision and it's taking too long, then that's a bad experience for you. So we've just got to keep playing Whack-a-Mole until the system is working seamlessly. 

For example, July to September, the agency completed 24,000 first plan approvals, and that was up 70% from the June quarter. They've done 30,000 access decisions, that's up more than 50% from the previous quarter. And we did 72,000 plan re-assessments, that's up 16% from the previous quarter. So yeah, it's got a way to go, but I know that I'm seeing the consequences of the extra investment. And when we can have top-down plans and better internal and consistent assessment, and when people are clear what they can spend their money on, and we've got a better standard of navigator, the problems will get ironed out.

Kylie Betts: How does the government plan to engage and collaborate with people with lived experience to improve the NDIS? I mean, Gill and I would gladly participate in a scheme like this. 

Bill Shorten: There are measures, but I will pass on your kind offer. First of all, I've introduced a rule that half of the board of the National Disability Insurance Agency have to be people with lived experience. Two of the top seven leaders of the agency are people with lived experience. The agency now employs 17% of its staff are people with lived experience. The new call centre that we have has 40%. We also have an independent expert advisory council, which is all about lived experience. We now have 23 co-design groups. 

The old NDIA, before I came there, was like a castle with the drawbridge up, and you would sit on the other side of the moat, you would just ping arrows at the brick walls. Now the drawbridge is down. Now it's got to be a scheme for and by people with disability. In the Safeguards Commission I've now made the most senior appointment ever of a person with lived experience, Associate Commissioner Nat Wade, who's a human rights lawyer, who's also a person with disability. Disability is no longer invisible in this organisation, and the experience is welcome. I mean, Kurt Fearnley is the chair of the board. And we can do better, and I want to make sure that people in the stroke category, that their particular experiences are understood and respected. 

Kylie Betts: Yes, because even though we come across as not speaking well, we still are smart and…

Bill Shorten: Please, understand how I see you; parts of your body mightn't work to the utility that you would like them to work, but that doesn't mean that you don't have a brain. It just means that we've got to work around parts of your ability to communicate, but that doesn't make you stupid, it just means that you've had a stroke.

Gillian Coutts: So what message would you give to share with stroke survivors and their families who may feel uncertain or may be overwhelmed by the process of seeking support through the NDIS?

Bill Shorten: Ask for help. I understand there's lots of stages, and I'm not going to tell you about your life, you are the PhD, you are the [unclear] of your lives, but I can imagine there's some shock to work through. You're going along one path, all of a sudden it's another path, and it's a road less taken. And your family have got to work out what it means, you've got to work out what it means. You've got to focus on your recovery, and what I want to do is just make sure that the NDIA can give you and your family some comfort that you're not making this journey on your own. 

The reason why I am so committed and why I fought so hard to set up the NDIS is that experiences such as yours are what one American poet once called a shaft of fate, and it could be any of us or anyone we love. I just want to make sure that you're not on your own. I want you to worry about loving your kids and your family, I want you to work on your recovery, all the things that are important to your quality of life. And what I want to work on is making sure that we've got some interventions and a personal budget which gives you some extra supports so this journey can be fulfilling. 

Gillian Coutts: Thank you. 

Kylie Betts: Thank you. 

Bill Shorten: My pleasure.

Tegan Taylor: So that was NDIS Minister Bill Shorten speaking with Kylie Betts and Gillian Coutts. And, as we said earlier, you will be hearing more from Kylie and Gillian next year. They have been working on a project called Stroke of Luck about their experiences.