WEBVTT - “Confusion and distrust”: The disability community on the NDIS overhaul 0:00:02.520 --> 0:00:06.040 Now these are all hard decisions, but they're unavoidable, and 0:00:06.080 --> 0:00:09.440 they're urgent, and I'll be seeking passage of these immediate 0:00:09.520 --> 0:00:12.840 spending controls in the budget session of Parliament. 0:00:13.440 --> 0:00:16.400 We'll be working. The Government says the NDIS has drifted 0:00:16.440 --> 0:00:19.680 too far from its original purpose, has grown too fast 0:00:19.720 --> 0:00:22.920 and too loosely, and that it now needs a major reset. 0:00:23.520 --> 0:00:27.320 The NDIS, remember, was established to support people with significant 0:00:27.360 --> 0:00:31.280 and permanent disability, but its scope has expanded to cover 0:00:31.400 --> 0:00:35.920 many Australians with less significant support needs. The Thriving Kids 0:00:35.920 --> 0:00:36.479 reformed them. 0:00:36.520 --> 0:00:39.519 Mark Butler says the changes which will see eligibility tightened, 0:00:39.920 --> 0:00:43.720 participants reassessed and one hundred and sixty thousand people booted 0:00:43.720 --> 0:00:47.800 from the NDS are about making the scheme sustainable and 0:00:47.880 --> 0:00:50.479 pulling it back to the people it was originally designed 0:00:50.479 --> 0:00:50.960 to support. 0:00:51.840 --> 0:00:54.880 We can't afford for the NDIS to continue growing at 0:00:54.880 --> 0:00:58.880 its present rate, but far more importantly, we can't afford 0:00:58.920 --> 0:01:02.280 for the NDIS to part of the challenge. 0:01:02.680 --> 0:01:05.800 But for people with a disability, families and carers, the 0:01:05.880 --> 0:01:09.120 language has done little to calm anxiety. Because this is 0:01:09.160 --> 0:01:12.280 not just a crackdown on fraud and dodgy providers. It's 0:01:12.280 --> 0:01:15.520 a change to hugot support, how that support is judged 0:01:15.840 --> 0:01:18.319 and what happens to people who no longer meet the 0:01:18.360 --> 0:01:25.559 new test. I'm Daniel James and you're listening for seven 0:01:25.600 --> 0:01:31.360 am today Australian Autism Alliance co chair Jenny Carovolos from 0:01:31.400 --> 0:01:34.800 the government's innbas oberhor and why it's causing so much 0:01:34.840 --> 0:01:47.760 apprehension across the community. It's Friday, April twenty four. Jenny, 0:01:47.760 --> 0:01:50.800 what did you make of Mark Butler's press conference on Wednesday? 0:01:51.200 --> 0:01:52.520 There was a lot to absorb. 0:01:52.600 --> 0:01:56.000 Actually, if I look for the positives in what was 0:01:56.080 --> 0:02:00.000 being said. It was great that it was being recogniz 0:02:00.080 --> 0:02:04.760 eyes that it was a system failure problem and it 0:02:04.920 --> 0:02:10.120 wasn't based on people with disability and in particular autistic people. 0:02:10.480 --> 0:02:14.200 The diagnosis gateway has funneled people onto a scheme that 0:02:14.400 --> 0:02:17.359 was never designed for them. Now that's not their fault. 0:02:18.240 --> 0:02:21.000 They've been told this is the only program available. 0:02:21.560 --> 0:02:23.960 And it was also great to hear that it was 0:02:24.080 --> 0:02:27.080 being said, which is something we've a spouse for a 0:02:27.120 --> 0:02:32.040 long time, that fraud is not being done by people 0:02:32.080 --> 0:02:33.000 with disability. 0:02:33.240 --> 0:02:36.640 When we talk about fraud in the NDIS, we're not 0:02:36.680 --> 0:02:40.120 talking about people with disability. We're not talking about families 0:02:40.120 --> 0:02:43.760 who've been put on a plan and offered support. They're 0:02:43.760 --> 0:02:45.040 not doing anything wrong. 0:02:45.440 --> 0:02:47.520 What struck you about the top of language he was 0:02:47.600 --> 0:02:48.680 using the. 0:02:48.720 --> 0:02:49.680 Language for me? 0:02:49.800 --> 0:02:55.240 There was a difference between when you hear about age care, 0:02:55.360 --> 0:03:00.000 which absolutely I support, it was about respect and investment, 0:03:01.000 --> 0:03:04.400 and when you heard about disability in the same context, 0:03:04.639 --> 0:03:07.200 you hear about costs. 0:03:06.360 --> 0:03:11.720 Slowing these rapid cost increases, clearer eligibility requirements and so 0:03:11.880 --> 0:03:17.800 importantly delivering high quality supports and services for participants. Because 0:03:17.840 --> 0:03:21.760 Australians expect the NDIS to support people with a disability 0:03:21.760 --> 0:03:25.520 in their families and to continue to transform their lives 0:03:25.560 --> 0:03:27.520 in the way we've seen happen over the. 0:03:27.480 --> 0:03:30.680 Past, and it was said that human rights was an achievement, 0:03:30.880 --> 0:03:35.040 which is great, but still everything was couched in terms 0:03:35.040 --> 0:03:38.040 of costs and making sure things were sustainable. 0:03:38.640 --> 0:03:42.480 These are huge announcements that me and the NDIS participants 0:03:42.720 --> 0:03:45.320 like your son will be reassessed and that over one 0:03:45.360 --> 0:03:47.800 hundred and sixty thousand people will be moved off the scheme, 0:03:48.120 --> 0:03:50.040 while others will have their budgets cut by as much 0:03:50.080 --> 0:03:53.720 as fifty percent. Can you explain just how significant. That is, 0:03:54.200 --> 0:03:54.960 it is huge. 0:03:55.400 --> 0:03:57.000 It is absolutely huge. 0:03:57.440 --> 0:03:59.720 I have a saying at the moment, and it's autistic 0:03:59.760 --> 0:04:03.040 peace will should not be the shock absorbers of systems. 0:04:03.120 --> 0:04:06.680 Governments have not yet fixed the issue here is the 0:04:06.800 --> 0:04:10.440 risk is losing what's been working before. Many people that 0:04:10.480 --> 0:04:14.440 they're referring to as a low and moderate support needs, 0:04:14.800 --> 0:04:18.520 they receive a great outcome because a little goes a 0:04:18.560 --> 0:04:25.120 long way in sustaining education and employment. Before the NDIS, 0:04:25.320 --> 0:04:29.160 there was no coherent system for people with mild to 0:04:29.240 --> 0:04:33.920 moderate needs. Access and supports were inconsistent, and in fact, 0:04:34.040 --> 0:04:37.760 there was a Center inquiry into autism that confirm that 0:04:37.880 --> 0:04:41.680 systems were fragmented, complex and failing to deliver outcomes. 0:04:42.080 --> 0:04:42.920 The evidence is. 0:04:42.880 --> 0:04:49.839 Clear that autistic people experience poorer outcomes across the whole lifespan, education, employment, 0:04:49.920 --> 0:04:55.000 health and inclusion. Generic systems didn't deliver effective outcomes, and 0:04:55.040 --> 0:05:00.279 the NDIS has delivered real benefits. So if artis stick, 0:05:00.279 --> 0:05:03.800 people aren't in that scheme, what scheme were they meant 0:05:03.800 --> 0:05:04.200 to be in? 0:05:05.200 --> 0:05:07.239 You spoke a little b about the positives and about 0:05:07.240 --> 0:05:10.120 some of the risks. Well, were some of the negatives 0:05:10.120 --> 0:05:13.440 from your perspective about Mark Bola's announcement on Wednesday. 0:05:13.400 --> 0:05:18.320 Well, definitely the issue that it came across that there's 0:05:18.480 --> 0:05:23.479 all these initiatives which we absolutely support reform and that 0:05:23.560 --> 0:05:26.760 the need for the NDA is to be sustainable. But 0:05:27.360 --> 0:05:31.200 there's a capping, for instance, on supports, So as soon 0:05:31.200 --> 0:05:36.000 as there's capping on supports, it still means what happens 0:05:36.040 --> 0:05:39.200 to the need, So you can cup a budget, but 0:05:39.240 --> 0:05:42.839 that doesn't mean the need has disappeared, so there's still 0:05:42.839 --> 0:05:46.000 a huge amount of work to be done. The other 0:05:46.040 --> 0:05:50.880 thing was about eligibility and who would be getting access 0:05:50.920 --> 0:05:55.920 and who wouldn't. They are all huge structural reforms. There 0:05:56.000 --> 0:05:59.000 is confusion and distrust about assessments. 0:05:59.040 --> 0:06:00.880 That's what community is telling us. 0:06:01.360 --> 0:06:06.279 People don't understand how decisions will be made about access. 0:06:06.920 --> 0:06:10.360 There strong anxiety about cap supports, as I said, versus 0:06:10.440 --> 0:06:13.799 real need and the spheres of gaps which are legitimate 0:06:13.880 --> 0:06:16.480 about falling through the cracks. 0:06:17.120 --> 0:06:21.720 My reaction is one of shock and of deep sadness. 0:06:21.800 --> 0:06:25.960 The disability community knew that this announcement would be bad, 0:06:26.120 --> 0:06:29.880 but this is quite frankly terrifying for us and our families. 0:06:30.440 --> 0:06:34.039 So is there a real sense within the community that 0:06:34.080 --> 0:06:37.080 you represent the autism community that you are being targeted 0:06:37.120 --> 0:06:38.000 through these reforms. 0:06:38.760 --> 0:06:44.320 Absolutely, It's been referenced specifically that autism is the largest 0:06:44.360 --> 0:06:48.960 cohort in the ndis that reforms specifically do affect children 0:06:49.120 --> 0:06:53.200 undernine and as I said, mild to moderate autism. So 0:06:53.279 --> 0:06:58.000 the interpretation in community spaces is that autistic people are 0:06:58.040 --> 0:06:59.200 the ones being moved out. 0:07:00.240 --> 0:07:02.960 Your twenty year old son, Stephan is an autistic person 0:07:03.000 --> 0:07:06.359 on the INDs, how crucial is it for your lives 0:07:06.360 --> 0:07:08.160 and are you worried that he could be one of 0:07:08.200 --> 0:07:09.880 those who's affected by these cuts. 0:07:10.600 --> 0:07:11.280 Absolutely. 0:07:11.640 --> 0:07:15.800 It has played a role for my son, interestingly predominantly 0:07:15.840 --> 0:07:19.679 through education to help support him to be the best 0:07:19.720 --> 0:07:22.360 that he can be. And as a result of that 0:07:22.640 --> 0:07:28.360 it was said that he's teachable, he learns, and his progressors. 0:07:30.080 --> 0:07:33.800 For us, it means that we're going back into uncertainty. 0:07:34.560 --> 0:07:37.680 His next life stage would be employment, so what does 0:07:37.760 --> 0:07:40.880 that mean for us? And the other thing is I 0:07:40.920 --> 0:07:44.280 actually stepped out of a CEO role in order to 0:07:44.320 --> 0:07:49.440 support my child. Doing that meant I'm unless productive member 0:07:49.480 --> 0:07:53.560 of the Australian economy. So the more pressure that is 0:07:53.560 --> 0:07:57.320 put on individuals and families, the more it impacts and 0:07:57.360 --> 0:08:01.360 we end up with that informal care economy, which currently 0:08:01.400 --> 0:08:03.480 costs seventy nine billion dollars. 0:08:04.360 --> 0:08:06.120 We've also worked out. 0:08:05.880 --> 0:08:09.440 That if something happens to us by the age of 0:08:09.480 --> 0:08:12.960 say seventy, although we would have provided for our son 0:08:13.120 --> 0:08:16.440 to have a home and to have an asset behind him, 0:08:16.920 --> 0:08:20.320 he would still need supports if he doesn't stay on 0:08:20.440 --> 0:08:26.400 his path and things break along the education to employment 0:08:26.520 --> 0:08:32.320 transition path. It'll cost government sixteen point five million dollars 0:08:32.360 --> 0:08:33.320 to sustain our. 0:08:33.240 --> 0:08:39.360 Sun coming up the NBIS cut that could see participants 0:08:39.440 --> 0:08:51.000 cut off from their communities. Jenny, The government has made 0:08:51.360 --> 0:08:55.319 a lot of noise about consultation and negotiating with the 0:08:55.440 --> 0:08:57.800 various communities that are impacted by this. Do you feel 0:08:57.840 --> 0:09:00.000 like you've been consulted with these reforms? 0:09:00.360 --> 0:09:03.760 With the reforms, there has been consultation about the new 0:09:03.880 --> 0:09:07.760 framework planning. In terms of the specific reforms that were 0:09:08.000 --> 0:09:12.800 called out, there hasn't been consultation, but that's been indicated 0:09:13.200 --> 0:09:17.400 by the Minister himself indicating there's a lot to be done. 0:09:17.520 --> 0:09:21.120 He had stated that specifically with thriving kids, and there's 0:09:21.120 --> 0:09:24.920 still a lot to be done in terms of readiness 0:09:25.120 --> 0:09:30.000 and we strongly support being involved and being able to 0:09:30.080 --> 0:09:34.319 be part of the solution because it is our community 0:09:34.559 --> 0:09:40.560 with lived experience and the disability representative organizations and other 0:09:40.679 --> 0:09:47.800 support agencies that have that evidence base, research, evidence, in practice, 0:09:48.040 --> 0:09:53.600 lived experience, so that we can focus on real solutions. 0:09:53.200 --> 0:09:54.800 And make sure that we get it right. 0:09:55.559 --> 0:09:57.880 One of the cuts Mark Butler announced was a thirty 0:09:57.880 --> 0:10:01.079 we sent cut to the Social and Community butnticipation budget. 0:10:01.520 --> 0:10:04.360 Now two hundred million dollars is instead being allocated to 0:10:04.400 --> 0:10:07.600 a new Inclusive Communities Fund. But it does mean that 0:10:07.600 --> 0:10:11.360 the average ENDS participant will lose roughly seven thousand dollars 0:10:11.400 --> 0:10:13.200 in funding for the kinds of things that help them 0:10:13.280 --> 0:10:16.080 lead an ordinary life. How big an impact will that have? 0:10:16.920 --> 0:10:21.920 Oh, it's significant again for autistic people in particular, but 0:10:22.120 --> 0:10:27.520 all people with disability. Generalized supports don't work, so it's 0:10:27.559 --> 0:10:34.000 been about individualized supports. Already, people are excluded autistic people. 0:10:34.160 --> 0:10:38.160 It's been demonstrated. We had a Center inquiry on autism 0:10:38.520 --> 0:10:44.400 and people are completely socially isolated a significant portion because 0:10:44.559 --> 0:10:49.199 of their needs. So when education systems break down and 0:10:49.400 --> 0:10:52.800 you're at home, that means you don't get the social interaction. 0:10:53.320 --> 0:10:57.599 When employment systems break down and you're not in meaningful 0:10:57.760 --> 0:11:02.559 employment to interact with others. Again, your social network breaks down, 0:11:03.160 --> 0:11:05.760 and then just having those supports to be part of 0:11:06.040 --> 0:11:09.000 the community are absolutely invaluable. 0:11:09.559 --> 0:11:12.960 The government says fraud inside the NDIS has become a 0:11:13.000 --> 0:11:15.760 major problem. How big a problem is it and what 0:11:15.800 --> 0:11:18.120 does it say about how the scheme has been policed. 0:11:18.640 --> 0:11:20.440 Fraud is a significant problem. 0:11:20.520 --> 0:11:22.520 I mean, I don't need to repeat or come up 0:11:22.520 --> 0:11:27.040 with different statistics to Minister Butler. He has indicated I mean, 0:11:27.080 --> 0:11:30.000 and this is a telltale sign that it has been 0:11:30.080 --> 0:11:35.200 a focus for criminal activity and fraudulent activity by not 0:11:35.280 --> 0:11:37.319 all providers, but some providers. 0:11:37.600 --> 0:11:40.320 The fraud in the NDIS is being perpetrated by low 0:11:40.360 --> 0:11:45.160 lives who are scanning both the taxpayer but more importantly 0:11:45.320 --> 0:11:46.480 people with a disability. 0:11:47.200 --> 0:11:51.319 But again, government is openly now saying that those critical 0:11:51.320 --> 0:11:55.800 controls and systems haven't been in place, the gates have 0:11:55.920 --> 0:11:58.439 been open and it's time to close them. 0:11:58.480 --> 0:12:00.280 So we absolutely agree. 0:12:00.360 --> 0:12:04.120 But what I am going to say is we're expecting 0:12:04.520 --> 0:12:07.640 that it is the systems that are being controlled and 0:12:07.800 --> 0:12:12.160 not individuals. The NDIS was set up about choice and control. 0:12:12.559 --> 0:12:17.000 We cannot lose that as a fundamental principle to people. 0:12:17.200 --> 0:12:19.960 That is what equity is about. That is what rights 0:12:20.000 --> 0:12:20.600 are about. 0:12:21.080 --> 0:12:24.840 And finally, Jenny, how much confidence do you have in 0:12:24.880 --> 0:12:28.520 the government and the systems that are required to change 0:12:28.520 --> 0:12:31.480 to make this thing work? How much confidence do you 0:12:31.559 --> 0:12:33.920 have that this reset will actually work? 0:12:34.760 --> 0:12:41.640 I have absolute confidence if the disability representative organizations and 0:12:41.679 --> 0:12:48.280 other support organizations across researchers, educators, lived experience are well 0:12:48.360 --> 0:12:53.000 working together to being part of the solutions, testing the 0:12:53.080 --> 0:12:55.840 assumptions and actually doing trials. 0:12:56.120 --> 0:12:57.559 If we do great. 0:12:57.360 --> 0:13:02.000 System testing and ensure clear on the outcomes and measuring 0:13:02.000 --> 0:13:06.520 them along the way, it will happen. If we do 0:13:06.640 --> 0:13:10.200 reform the way that's been done in the past, where 0:13:10.240 --> 0:13:13.560 we start making the changes before the system is ready, 0:13:14.240 --> 0:13:17.480 then all we've done is created a problem and it 0:13:17.559 --> 0:13:20.320 will reveal itself in other systems instead. 0:13:23.520 --> 0:13:25.160 Jenny, thank you so much for your time. 0:13:25.440 --> 0:13:25.840 Thank you. 0:13:35.120 --> 0:13:38.400 Also in the news, the states have already begun flagging 0:13:38.440 --> 0:13:42.000 issues with the federal government's INDIS overhaul. The New South 0:13:42.000 --> 0:13:44.480 Wales Premier Cesi's government won't be able to provide an 0:13:44.520 --> 0:13:47.040 equivalent level of care for those who are cut from 0:13:47.040 --> 0:13:49.120 the scheme. About a third of the one hundred and 0:13:49.160 --> 0:13:51.760 sixty thousand people said to be booted from the NDIS 0:13:52.240 --> 0:13:55.920 are expected to come from your South Wales and Kyle 0:13:55.960 --> 0:13:59.440 Santolance has been accused of rating radio listeners and bosses 0:13:59.760 --> 0:14:03.400 makes spleedy ridden rants. Details of the alleged attacks have 0:14:03.440 --> 0:14:06.920 been revealed in court documents for aarn's defense against the 0:14:07.000 --> 0:14:11.000 eighty five million dollar claim filed by sant Lance. Kyle 0:14:11.040 --> 0:14:13.800 and Jackie Oh's former employer is also suing the pair, 0:14:14.280 --> 0:14:17.280 demanding they pay for the advertising loss by Kiss FM 0:14:17.520 --> 0:14:20.880 after their show was pulled off air. I'm Daniel James. 0:14:20.880 --> 0:14:24.480 Thanks for listening to seven AM. We'll be back tomorrow.