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Joint Standing Committee on the National Disability Insurance Scheme
08/11/2017
Implementation and performance of the National Disability Insurance Scheme

ABDI, Mr Amir, Community Advocate, Refugee Council of Australia

DORGAN, Ms Penny, Private Capacity

FILARDO, Mr Frank, Private capacity

HIRSCH, Mr Asher, Senior Policy Officer, Refugee Council of Australia

LAW, Ms Sonia, Manager, Mental Health and Disability Advocacy Program, Victoria Legal Aid

KERWIN, Ms Hollie, Senior Policy and Projects Officer, Civil Justice Program, Victorian Legal Aid

MIOT, Ms Rosa, Private capacity

PIANTO, Ms Julie, Private capacity

TALEPOROS, Dr George, Policy Manager, Summer Foundation

VIMPANI, Mrs Carolyn, Secretary, REAL Inc

Committee met at 13:01

CHAIR ( Mr Andrews ): I commence this discussion with the Joint Standing Committee on the National Disability Insurance Scheme on a range of general issues around the implementation and performance of the NDIS. I welcome everybody who has joined us today. Before we start I remind you that these are official parliamentary proceedings. A Hansard record will be prepared and the discussions are being broadcast. I also indicate that, as you may see, the ABC is filming part of this. I ask at the outset that if you don't want to appear in an image to put your hand up so that the cameraman knows that. Otherwise, you may randomly appear in some footage in the future.

I ask those contributing to the discussion today not to divulge confidential, personal or identifying information when you speak. If you wish to supplement anything that you say today with written information you can forward it to the secretariat after today's discussion.

I said at the outset that our session will examine generals issues on the NDIS operations and, importantly, will hear from you about your experiences of interacting with the scheme. As we have held formal hearings around Australia in the various capital cities we've had opportunities such as this for participants and service providers and others who are involved with the scheme one way or another to have their opportunity to have a say. So from our perspective as the parliamentary committee it's very much a listening exercise. We probably won't interrupt very much unless we want to try to clarify something which you may have to say by way of your contribution. But, overall, it's an opportunity for us to hear of experiences, particularly those of participants on the operation of the scheme.

I will open the discussions on that note and I invite somebody to lead off.

Ms Miot : Thank you very much for the opportunity to speak today. In my excitement I forgot to bring my hearing aid!

I live in East Doncaster. My daughter, who has an intellectual disability, is 40 years old. She has lived with me all her life. She's currently in an independent living program in Blackburn. That ceases on Friday, and that's relevant to what I have to say. I won't be very long. I want to congratulate the architects of the scheme, because it finally gave us, as carers and parents, the opportunity to have a reference point and to look to the future for our child. Notwithstanding that I keep referring to her as my child, she is an adult, of course.

I was first contacted by the NDIS in May, and it was confirmed that she was eligible to participate in the scheme. In September I was contacted to arrange my first meeting for her plan. That occurred on 28 September. I had an email this morning confirming that her plan was actually approved on Monday the sixth. I was delighted, but, as she completes her 20-week independent living program on Friday, at this point in time there is nowhere for her to go other than to come home. My husband has been very ill this winter. Fortunately, it all occurred while she was in the independent program, so she did not witness her dad being very ill. He is now recovering but still having treatment.

My concern has been that it's evident that there is a lack of communication between the NDIA/NDIS and the state bodies that have to deliver the accommodation aspect of her needs. I have advised them—I have been constantly contacting them—that she should not come home other than for a 24-hour home visit to celebrate her birthday or something, because it would be a waste of our money for the 20 weeks that she went in the program and the skills that she learnt to get on with other people, other residents in this program and the skills she has learnt to be more independent. She now showers with only a carer watching her and not actually helping her. She can turn the taps and regulate the water without burning herself—very basic things like that.

I'm concerned that for many, many decades the housing aspect of providing for people with disabilities, particularly people with intellectual disabilities, has had shortcomings. People are on the disability support register for a long time. Parents are in their seventies and eighties when they may be lucky enough to be offered a residential component for their adult child. I have requested again and again that suitable housing or accommodation be provided for my daughter so that she doesn't go backwards in the skills she has learnt and back into the pattern that mum's the tooth fairy and does everything. I think that's enough to convey to you that apart from being in the scheme and very pleased and delighted that we are in the scheme, there is that component that is seriously lacking for people. I'm over 70, and I think I've done my bit for 40 years. I've also been a taxpayer. I would imagine that more attention has to be paid to that partnership between the federal system and state system in terms of accommodation.

Very briefly, this is an article from last Tuesday's Australian regarding the problems in Western Australia and the 7,000 extra people coming on board in Western Australia and the funding shortfall. I could imagine that's probably similar all around Australia. As a bit of a cheeky lady, I would imagine that if we got all the multinationals to pay their taxes there would be plenty of money for all of us. Thank you.

Ms MACKLIN: Do you mind telling us your daughter's name? Is that okay? Just so I can call her by her name.

Mrs Miot : Jacinta Ann Miot.

Ms MACKLIN: In her plan, what is in the plan for housing and accommodation support?

Mrs Miot : I've only just briefly looked at it this morning. I didn't have a lot of time because I was at the hospital with my husband. I emphasise that so that you know the pressures that are on me. Even though we love her very much, I don't think it's a good thing that she comes home, as I said, other than weekends or for the odd day here and there. It gives me support in the employment aspect. She's at Nadrasca four days a week, so the service provider will get X dollars. There is support coordination. So whoever I choose for that—or it's chosen for me, whatever—there's support for that. And there's a significant amount of support for what's fair and reasonable in her daily needs. There is no mention of accommodation.

Ms MACKLIN: Did you raise that when you had the planning meeting?

Mrs Miot : Certainly.

Ms MACKLIN: And what did they say?

Mrs Miot : I got a call from DHHS on Friday from Rebecca Fitzsimons, I think her name is, at DHHS Box Hill. She said they're looking into it. I said, 'You've only got seven days.' She may go into a temporary respite house—

Ms MACKLIN: What I mean is, what did the planner say when you had your planning meeting? What did they say about housing?

Mrs Miot : I'll consult with Carolyn. She was my advocate.

CHAIR: Was your planning meeting face-to-face or by telephone?

Mrs Vimpani : I was Rosa's advocate in her meeting. I also have a separate presentation later today. In the planning meeting the planner listen very carefully. We were very pleased with the attitude of the planner, but in the plan, which Rosa showed me this morning, it's assumed that Jacinta is going home, which was not the intent during our discussions in the planning meeting.

Ms MACKLIN: So it was quite clear in the planning meeting and that Jacinta wanted to live independently?

Mrs Miot : Yes. Subsequent to this morning's email, about an hour and a half ago, I got an email from the planner, the local area coordinator. I had asked her in an email, 'There is nothing about accommodation in this particular plan, so I'm assuming Jacinta comes home.' She replies no, they have to find accommodation for her.

Ms MACKLIN: 'They' being who?

Mrs Miot : DHHS. At the moment the state body, DHHS, is responsible for SDA whilst everything is sorted out. The whole country is asking for assistance, and there's nothing there, to be honest. Jacinta is not violent. She's a relatively compliant individual, so she doesn't require very high support accommodation. She is probably on level 1 or 2 of SDA.

Ms MACKLIN: Given that your local member is here, we might have a chat with your afterwards and see if we can help you.

Mrs Miot : Thank you very much. I must repeat what Carolyn said, that the local area coordinator at Box Hill was such a sympathetic and compassionate lady.

Ms MACKLIN: Is there someone from the agency here? Maybe we could meet with you afterwards and try and sort this out. She obviously should have accommodation in her plan and that should be done before she gets told she has to leave on Friday.

Ms HUSAR: Thank you for coming today and giving your evidence and thank you for the care that you've given to your daughter for 40 years. Between when you had your face-to-face plan and when you received that plan as the final, were you presented this as the draft option—'This is what we're thinking of giving you'—or were you just given the final plan?

Mrs Miot : I started to get a bit anxious so I sent the local area coordinator an email. I said, 'What's happening? It's been five weeks.' She replied, 'I understand that it's basically almost ready to be completed.' That was Friday. It was approved on Monday. I didn't have any interim draft of what it was. I haven't really had a good look at it in fine detail.

Ms MACKLIN: That's the point that Emma's trying to get to. A lot of people have raised this concern that people should see the draft and be able to check it before it is finalised. That would prevent misunderstandings or things being missed.

Mrs Miot : I agree with that. On the front sheet of her plan it actually says 'review on the fifth of February'. That's only three months away. It's quite clear to me that perhaps it's a little bit complex and therefore she is on a short-term review to make sure that she's getting what's fair and reasonable. I'm reassured by that. I'm not critical. I understand that 5 February means that they will start looking at it then and maybe by 5 May or June she will in fact have the little hiccups ironed out and then possibly a review in 12 months time, next November.

Ms HUSAR: But if you were given a copy of the plan before they sent it to you, you would have been able to see that there were no accommodation provisions in that plan.

Mrs Miot : That's true.

Ms HUSAR: You would have been able to have it looked at, rather than the procedure you would have to go through now.

Mrs Miot : I have it printed out here. It's 13 pages. I'm assuming that the daily support must be attached to a residence, but it's not clear.

Ms MACKLIN: Let's go through that later on.

Mrs Miot : Certainly.

Senator SIEWERT: The issue I was going to ask about has been covered, which was, did you see the draft?

Mrs Miot : On reflection, that's probably a good idea, because it gives me and my husband a chance to say, 'You've omitted this.'

Senator SIEWERT: In the toing and froing with you, once you had the first face-to-face meeting and the five-week period, were there any questions—

Mrs Miot : I've waited four weeks and three days, and then I was getting toey because Friday is her exit day. This evening at 5 o'clock—I'll have to postpone it, because I'll probably still be here—is her exit meeting with the house. We haven't told Jacinta, because she loves it there. She's never said 'I want to go home', and when she is home for the birthdays, she says, 'What time are you taking me back, Mum?' I'm so thrilled that over those 20 weeks she has learnt to actually separate from me without any anxiety or things like that. Thank you very much.

Mr Hirsch : I'm going to introduce Amir, who's going to share a little bit about his story. Amir is a refugee from Iran, and he is currently on a temporary protection visa, a safe haven enterprise visa. Because of that, he isn't able to access the NDIS. He meets all the eligibility criteria but, because he's on a temporary visa, he's going to spend the rest of his life in Australia without disability support. I'm going to hand over to him.

Mr Abdi : Good afternoon. I hope this speech is not going to be boring for you. Forgive me for my accent. If you have any questions, I will be able to answer at the end.

I am Iranian Kurdish, born in a village in the south-west of Iran. I am one of five siblings, brought up by my parents—open-minded parents who were farmers—in a beautiful valley surrounded by mountains. When I was 12 years old, I had an operation on my eyes. The doctor was not competent, and the operation went wrong and left me blind in both eyes. I was sent to a boarding school especially for blind people, on the other side of Iran, where life as a Kurdish child was made very difficult, as I was culturally and linguistically different from other Iranians. This was when I first experienced discrimination. At this school, I learned braille and to speak Persian. Now I speak Kurdish, Persian and English.

I left Iran for many reasons of discrimination due to my cultural heritage and being blind, which is seen as shameful and a burden on my family. You are stigmatised by the community and authorities. My journey to Australia was traumatic and one I do not want to dwell on today—only to say it was and is the best decision I could ever make. However, being blind and seeking asylum has not been easy. Until recent months, I have been on a bridging visa, but now I have been granted a safe haven. Because I am on this safe haven visa, I don't have access to disability services, including NDIS. This is acknowledging that I am a legitimate refugee and I have five years security to move on in life in my new country and hopefully to full citizenship in the future.

I have endeavoured to integrate into the Australian community and give back in as many ways as possible. This country has given me opportunities to better myself and find dignity and acceptance as a person with disability who is capable of fully engaging in life and being ambitious to achieve my true potential. I have learned English over the past two years in Australia. I am working as hard as possible to support myself and to gain independence as a fully engaged blind person in Melbourne. I now have two jobs, which I enjoy and which make me financially just able to support myself. Since the change of visa, I find myself with less support. I no longer have a case worker or access to a number of services, including financial services. For example, I had a colour lens for one eye that I could buy for $28 but now it would cost me over $100 to replace it, which is beyond my means.

I want to live independently but even though I am working at two jobs I cannot afford rental accommodation and have enough to feed myself and get to and from work and engage in social life. Beyond this, I would need support from a person to assist in the flat—to organise and clean and to assist in other practical life skills, such as shopping for food and clothing, computer skills and specialty software, navigating the gym and going to new places, like hospitals. I would like to have a guide dog but, at the moment, I cannot afford to house or care for one. Access to the NDIS in these areas that I have spoken of would mean I could be a beneficial, constructive and productive member of the community.

Today I ask you to consider my personal situation as well as the situations of all individuals appealing for NDIS assistance. We are all individuals with different needs and abilities. All we ask for is a hand up and we will demonstrate our full and constructive input into the great Australian community and economy. It was my honour to present here and I thank you for listening to my presentation.

CHAIR: Thank you very much, Amir, and thank you for sharing it with us. Who would like to make a further contribution? The gentleman in the front row.

Mr Filardo : My son's name is Vincenzo and he has been with an approved NDIS plan since September last year. Before that, he was having support services through Partners in Recovery as well as the DHS, but those support services were stopped on 30 June 2016. For three or four months he regressed to his prior condition. I might say that my son has been diagnosed with a number of different disabilities. He has an intellectual disability, a brain-acquired disability, psychological disability, schizophrenia and drug and alcohol, as well as a degenerative immune system, cholesterol and diabetes. He's got a lot on his plate. He's been on clozapine for the last seven years. He was diagnosed with psychosocial disability, as well as most of the other disabilities when he was between 16 and 18. He was on DSP for many years, but he never got anything until the last three months from DHS. He had a sum of money he had to spend within three months and that ended on 30 June 2016, together with all the other support services from Partners in Recovery and other services.

The NDIS plan was done over the phone. My son was not able to do it, and so I had to do it on his behalf. I made sure that I told the planner that I wanted to have a face-to-face meeting, but that was declined. The planner suggested we have the phone planning conversation at that time. The first point I made was that my son requires independent housing or accommodation, as well as live-in support. That was the first requirement because he has been living with us all the time, with the exception of about nine months when he lived in an assisted unit because Mental Health Services suggested it would be the best thing for him if he could find a place to live independently.

That place didn't work so well. He was living with another two people in the unit and, since he is very timid, those other people were all the time on his heels for cigarettes, money and anything else he had in the fridge. We decided he needed to stick it out for a number of months, as suggested. He stayed in that assisted unit for about eight or nine months, but we had to go there every day to provide him with food, because his fridge was raided, even though we provided him with a fridge in his room at our expense as well as a new bed.

It was so he could be independent, but, unfortunately, that was not the case. Starting from September last year and following his NDIS plan, they straightaway said that we'd have a review because what we asked for over the phone was not actually in the plan.

Following many, many phone calls and many, many letters to the minister and whoever, we required a review. A review was done in February 2017 but, between September 2016 and February 2017, he did not receive any support services—none. From June to September and September to February, he was supposed to be allocated or choose a support coordinator. He actually chose a number of support coordinators, but the support coordinators wanted him to sign an agreement and then they would provide services.

I wanted them to tell us what support they would actually provide before I signed their agreement—not our agreement, their agreement. They said, 'Sign, or we won't provide any service.' One of those organisations even charged my son for going there and talking about the service agreement, and the NDIA actually paid them and let us know. I complained about that, but they said, 'Well, you went to see them. They need to get paid.' But we didn't agree. We didn't sign an agreement therefore why should they get paid?

In any case, we eventually we got an organisation to provide support coordination. Over a number of months, my son was spoken to on two occasions for a couple of minutes each time. I complained to the organisation, and the organisation said, 'This is the best we can do.' I said, 'I'm sorry; I will not accept that.' I told them that we didn't require their services any longer.

Following that, it was a very hard slog to find a new support coordinator. Eventually, we found one after many months. This support coordination started well but didn't finish well. We went for a review in September and the previous funding was eliminated so, between September and February—he didn't spend a cent—his funding was taken away. New funding was provided: instead of $48,000, he was provided with $65,000, which included a housing coordinator to research my son's ability to actually get SIL as well as SDA.

We had a number of assessments which cost thousands of dollars. However, I kept on asking the housing support coordinator as well as the support services coordinator: 'What are you doing? When is all this information being provided to the NDIA? Who's going to make a decision about the SDA and the SIL? We have all the information. We have all the assessments. When will they be provided to the NDIA?'

They won't talk. They've stopped their service, so I formally complained. I've continued complaining to the NDIA about having a review because nothing happened between February and July, September, October—nothing has happened. Over this time, my son has only had, on a number of occasions, social support. Everything else—nothing was provided.

CHAIR: Frank, I'm sorry to interrupt. What's the situation now?

Mr Filardo : The situation now is that we had a review on 15 October, but the review was not about my son. The review was about a change of service provider—the support coordinator. Even though we complained about the previous support coordinator and the housing support coordinator, because nothing was happening, when we went to the review, nothing about this was talked about. The planner said, 'What we've done is provide you with a new support coordinator.' And guess who the new support coordinator is? Those people actually came in the first instance and got paid for not doing anything. They're in Dandenong and, when they came to see my son, they charged two hours travel time. For each hour they came, they charged three hours. What sort of business is this?

CHAIR: I will try and summarise what I understand your experience has been—and it's not a good experience, obviously. From the time of a plan first being put in place in September 2016 until now, virtually no services have been provided?

Mr Filardo : Exactly.

CHAIR: Despite requests, reviews and a change of support coordinator et cetera, the reality, from your perspective and your son's position, is that for over 12 months services haven't been provided?

Mr Filardo : Exactly right.

Ms MACKLIN: Where's Vincenzo been living?

Mr Filardo : With us; with the family.

Ms MACKLIN: Before, when he had the ISP, where was he living?

Mr Filardo : At home, as well.

Ms MACKLIN: He's always lived at home?

Mr Filardo : Yes.

Senator SIEWERT: Except for that brief period when he tried living independently.

Mr Filardo : Yes. In actual fact, during that period, he regressed. He had to be put on Clozapine, because that is the only medication that sort of sustains him.

CHAIR: Your experience is obviously one that is totally inadequate from the perspective of the NDIS and it working. I think the best that we can do, as a committee, to try and assist is to take it offline and make sure the NDIA follows this up in a way in which you get some real results and not just a continuation of what's happening.

Mr Filardo : The new support coordinator was appointed on 15 October, and he or she still has to provide a service. That service is supposed to come in two weeks time. For one full month there's been no support coordination—anyway, you understand.

CHAIR: Thank you for coming along and sharing your experiences. It's only because of people who are prepared to do this that we can, hopefully, have some input into improving the system. Thank you.

Mr Filardo : One last thing is that I totally believe in the NDIS and its principles, but the way it's actually implemented, where they put all the onus on the participants themselves to be able to look up and provide all the information online—my son has no internet and no computer. Thank you.

CHAIR: Thank you very much. Carolyn?

Ms Vimpani : My name is Carolyn Vimpani and I live in Doncaster East. My role with the NDIS is not as a person who is directly accessing it either for myself, because I'm past 65, unfortunately—I'd love to be part of it—or for a child with a disability. My role has been through an organisation which I've been involved with for 22 years in Manningham called REAL, which is an organisation that provides social and other types of support to families and adults with intellectual disabilities who live in Manningham. Through this process of talking to parents we became aware over 12 months ago that many parents were getting quite anxious about what to do about the NDIS. They knew it was coming, but they really didn't know what to do, so our organisation arranged for an advocacy organisation, VALID, to come and conduct workshops which, as our organisation has no regular funding, were held in my home. We had 15 families meeting monthly with the person from VALID, who went through in detail about how you approach the NDIS. I think that was a very beneficial process which was just available because REAL was able to provide that for the parents in conjunction with VALID.

From that process and through going to many forums and also looking at whether REAL should become an NDIS provider, I've come to have some knowledge of how the process was working and have been privileged to be able to help some families to write their plans and to be an advocate in their meetings. Through this process I've identified a few things which it may be useful for this panel to know about.

Firstly there is the initial letter that the parents get. I feel that that letter could be a little bit more instructive about how to go about the process of getting their plan together—not in jargon but in very plain English. I think that would be a very good starting point. And perhaps there could be a telephone number on that about where they can get help. One of our participants whose mother works got a letter saying that the NDIS would not be following through, because they hadn't been able to contact her, but it turns out they'd been ringing the home number when she was at work. She had provided a work number, but that hadn't happened. So that was very anxiety-producing.

Anxiety seems to be the underlying thing for parents Once they understand the system, that anxiety diminishes. It's this whole thing of 'What is this' and 'How on earth am I going to cope with the fact that I'm already a carer and looking after my dependant?' You may be by yourself doing this as not all parents have partners. It's a very anxiety-producing thing. During the actual meetings that I've been to—and I won't disclose the exact details of the meetings, but I'll just tell you some general things that came up. At one of the meetings the local area coordinator had a very poor understanding of what intellectual disability was and in fact thought the young person had a psychiatric disability. They didn't understand and so were using all the wrong terminology. I thought: 'You're not tuned into this at all. You don't understand what intellectual disability is and the impact it has on a person's life.' A parent was told that, because her child had two disabilities—a physical disability and an intellectual disability—she had to choose which one she wold be funded with under the NDIS and she couldn't possibly have goals in both areas, although both areas were documented by specialists, with all the right reports and everything submitted to the LAC. They still said, no, you can only have one, which really was very alarming.

On the meetings that I've been able to go to I've encouraged parents to prepare their goals beforehand and to make sure that these goals were reasonable goals within the sort of context that these families were living and what they needed, and I've been really impressed with the way parents have really thought this through. They've talked to their young people where that's been appropriate. They've come up with goals that are really the right sort of goals, I believe, under the NDIS, but one LAC didn't even want to look at that or take the piece of paper. I found it incredible that after all that work it was just the interview questions that the LAC chose that were recorded, not all the things that the parent had got ready beforehand.

One LAC didn't arrive for the meeting. This particular parent was absolutely beside herself by the time she got there herself, and, when the LAC didn't turn up, that was just terrible. Some are told by the LAC that the current ISP package would not be matched, that there were so many demands that they could not expect to get what they're getting now. This particular participant's goals were quite modest. They weren't asking for accommodation. They weren't asking for a huge amount, really, and their ISP package was reasonably modest as well, but they were told: 'No, you won't be getting that. We can't afford it.' I thought, 'My goodness; what's going on here?' I had to really sit on my fingers a few times as an advocate.

The area of transport is a huge area. If you live in the outskirts of Melbourne or rural Victoria—I have a close connection to the Horsham community because I have family up there, and I spend a week a month up there and so have been talking to some parents up there as well—I just don't know how transport is going to be addressed. I don't have any magic wand, but it is a huge issue. It is especially an issue where the carer is no longer able to drive, because the person, who may be living at home still—and not all people want to move out of home—is isolated because there's no transport. They may have the mobility allowance now, and the equivalent of that translated into NDIS terms doesn't go very far. If they've got to travel to work especially and if they're unable to use public transport because there isn't any or it involves two or three changes of buses or trains, if there were sort of a single bus then many parents would be willing to try that, but, when you've got to do interchange—I could tell you many stories of people who have been asked to get off trains because the level crossings were going and things like that, and they didn't know what to do then. They just sort of got lost. There's always an uncertainty about public transport with a person with an intellectual disability. Some wonderful work's been done in travel training, but usually it's for one bus from home to destination, so, if you've got to make changes, that's difficult.

My greatest concerns are about children with disabilities in mainstream schools. I don't believe they're getting adequate information. These children may have a teacher aide. Many children with disabilities do. The parents don't realise that they can get support beyond the school for a child with autism, for example, to get help in learning some basketball skills so that they can participate in the school basketball—things like that. They don't realise that there are chances for them to have one-to-one support outside the school. It is not educationally based; it is for the social benefit and the wellbeing of the family. The principals are being told but the principals are not filtering it down, and I do have actual evidence of that. It is really an important area. A big campaign needs to be run for children in mainstream schools and their families.

Families from non-English speaking backgrounds is another area. I am aware that interpreter services are available, but I believe it needs to go far beyond that. I am in the privileged position of being able to support a family at the moment. The forms absolutely fazed the lady. With just the initial form to register for the NDIS, she had no idea what to do. It was just great that I was able to help her, but how do we manage to help people who haven't got English skills and can't handle the basic administration involved? We need to reach out better to our ethnic communities on the NDIS. These families need to be offered preplanning support meetings, not just support meetings to implement their NDIS plans but to have someone, like I was able to do in an unpaid position, who can go in and sit down with these families and go through things with them. It may not need to be a person who has a language other than English—I don't, but I was still able to help because I could fill in the forms for her.

There are individuals who have a cognitive disability themselves. I know one family where they have got to do four NDIS plans. The mother and the father have cognitive disabilities, and both their children do. She had no idea where to start—absolutely no idea. The children are at special schools. I kept saying to her, 'Go to your school and ask them,' but she said, 'I don't think I can do that.' She was really struggling, because she herself has a cognitive disability. We need to look far more carefully at how parents who have a cognitive disability are dealing with the NDIS. I don't think there is enough advocacy around that area at the moment. I am on the board of STAR. We hear stories through STAR of parents who are struggling.

There are older carers, people aged 70 plus—and this was alluded to earlier—who do not have access to the internet. At one of the meetings I was at, an older lady—who has no mobile phone and no internet and who writes cheques—was told that she would have to access the portal. I said to the LAC, 'Surely, you've got an alternative system for somebody like her.' She is a very capable lady and she wants to manage her son's package. They said to her, 'Get a family member to do it.' She said: 'My husband is dead and my daughter is dead. My sister is 80. Who do I get? I don't want to give that information to other people.' I just think it is absolutely unacceptable that someone who is very alert and very able is denied the possibility of doing it, except through the internet. She does not want to access the internet. She said, 'I'm too old to start.'

The lack of access to a draft of the NDIS has also been mentioned. A lot of the problems could be solved if it were possible for families to see a draft before it was published, just to make sure that there haven't been any huge omissions. The wait of up to four months for an outcome of the NDIS meeting, I believe, is too long.

I have one more thing to say and this concerns our organisation. REAL has been providing services in Manningham for 22 years. For us to become a registered NDIS provider we're going to have to issue accounts and do everything like that. We're run by volunteers. I'm the secretary of the organisation. To get things into a position where we can register is a huge amount of work. You do need administrative staff, as an organisation, to be able to issue all the invoices you need to issue. I've been trying to work it all out but can see it's not sustainable in the future. I'm getting older too. How do small organisations, local organisations—Mr Andrews knows our organisation. We've done a fantastic job for 20 years in Manningham! I really wonder whether the NDIS, by the insistence on registered providers, is going to cut out a lot of organisations like ours. People can opt for self-management but I'm finding very few people are. Most people are just so tired, so exhausted, so confused. They say, 'We'll just let the NDIA manage it,' which means that we cannot claim. We do employ workers to work with adults in our program. I feel it is something that has been overlooked for a small organisation that doesn't have any administrative backup.

That is basically what I wanted to cover and I do thank you for the opportunity to get all these things out to a listening audience.

CHAIR: Thank you very much for a range of very commonsense—

Ms MACKLIN: It was very comprehensive.

CHAIR: comprehensive observations but also some very practical issues and suggestions about how the system can be improved. That last point about the role of voluntary organisations, which provide so many services and so much care and support for tens of thousands of Australians, and how they fit into this in the future is a real issue and one that needs a lot more observation. They're my personal views. I'm not purporting to speak on behalf of the committee on that. Knowing the work that you do—and organisations right throughout this country that do work like that—we have to make sure there's a place for people who want to make that contribution to be able to do so in the future, so thank you.

Ms Pianto : This is my youngest son, Christopher, and this is my eldest son, Tyler. Please bear with me; the story is quite a long one. Christopher and I were living in Gippsland, and Christopher was granted early transition to the NDIS because we were on the DSR and because of our history. Without going into a lot of history, Christopher was in supported accommodation and was abused. I brought him back home to live with me. Christopher is 27 years old and has complex medical needs as well as his disability. At the time that he came home I had just recovered from surgery for cancer. It was obviously a major issue. That was in the middle of a complaint to the Disability Services Commissioner. Senator Siewert knows all this, because we gave evidence at the Senate inquiry.

Bearing that in mind that the last five disability service providers that we have used to give support to Christopher have, at the very least, taken advantage of him and, at worst, he's actually had abuse and was put at risk of sudden death. So there's a lot of stuff that's going on there. After Christopher came home to live with me, we realised that it was not sustainable. My plan has always been to get him to live independently. That was why he went into the group home in the first place. At that point, my two eldest sons had not been involved in his care. I'd always managed to keep them as brothers rather than as carers, but at that point they both, to their credit, became support workers for Christopher. We used ISP funding. That was because at that time we didn't trust anyone other than family to support Christopher. I'm sure you can understand our reasoning behind that.

When we took early transition to the NDIS, which was in November last year, I knew a little bit about what had been going on, so the first thing I did was request a face-to-face plan, which I was granted. We had two meetings with the planner, and I said that the main goal was for Christopher was to actually move to Melbourne because the two older brothers, who are going to end up being responsible for Christopher and keep him safe, healthy and happy, were in Melbourne—in Preston and Coburg. We wanted to move Christopher to North Melbourne. That was the main goal discussed at the meeting. The documents that I provided were all of his autism assessments from the Centre for Developmental Disability Health—there was a tonne of stuff.

In January we were informed that the NDIS doesn't allow family members to be paid unless there are exceptional circumstances. I then created a submission to apply for exceptional circumstances because, obviously, Christopher had been abused. It said we wanted to be able to pay family members while we transitioned Christopher to Melbourne and while we recruited and built a team of support around him. It was in January that the submission was put in; by April we hadn't heard anything. Then I got a phone and they said, 'Okay, the technical advisory team have agreed that you have exceptional circumstances and we will let you pay family members for three months while you are in Gippsland.' It was like: 'What? Hold on a second. How am I supposed to recruit workers and train them while I'm in Gippsland when he's going to be in Melbourne?' And they said, 'That's the reason you need to put in a review then.' So I said, 'Okay, I'll put in a review,' and they said, 'You have to wait for the plan to be approved before you can put in a review.'

I hadn't heard anything, so in June I finally contacted Darren Chester, who's my local MP, and, funnily enough, I got a letter from Centrelink saying that Christopher's mobility allowance had ceased because he had an approved plan under the NDIS. Then I said, 'Okay, fine, we're going to put in a review.' And I put in a review. Tell me, who came up with the term for a form that says: this is a review of a reviewable decision? We filled out the review of the reviewable decision form and then waited for a decision on the review of the reviewable decision. Again, we heard nothing.

In the meantime, in August, they'd agreed that we could be paid for three months. That's what it said in the plan: family members to be paid for three months. I'm sorry, but I cannot recruit and put a team of support in place for Christopher in three months. It is just impossible. In the meantime, because I'd been so scared of him living alone with me—we live on a remote island with something like 500 people and 300 koalas; it's not a great place for him to be—my middle son offered to share a house with Christopher if we wanted to move him to Melbourne. In August we moved him to Thornbury. He's sharing a house with my middle son and, since 14 August, we've used the funds from the NDIS plan to pay for Tyler and me to assist with that.

With the review of the reviewable decision, we hadn't heard anything so then I contacted the Commonwealth Ombudsman in August. Funnily enough, within 24 hours, I got a phone call from the NDIA saying that they were going to have a look at the review of the reviewable decision.

The following week it was allocated to a senior planner in Geelong and I got a phone call—in the middle of an exam, I might add. Again, I'd put in a lot of information including letters from Christopher's autism specialist saying that he can't cope with change. You can't just suddenly put a team in, so it was going to take time, and she recommended up to 12 months.

The first words out of the person's mouth on the phone were: 'I completely agree with you, Julie, but it's impossible. We can't do it in three months.' I don't actually remember the rest of the conversation. That's what stuck in my mind. Then she said, 'Well, next week you have to have a plan review to change the plan.' The following week I assumed I was going to get a phone call, which I did. The person said to me,' Okay. We're going to do a review of Christopher's plan. We're going to extend the allowing family members for three months.' I said, 'No, no, no. It's up to 12 months.' She said, 'No. It's only up to three months.' And I said, 'No. It's 12 months.' And she said, 'No.' Anyway, that went on for a while.

In the meantime I tried the senior planner, who did the review of the reviewable decision, who gave me a phone number. I've left three message with them—no response. The next thing I got a letter through the mail saying that the review of the reviewable decision had been done and that 'I am not satisfied that 12 months is required, so you've been granted an extra three months but it's from the start of the plan.' In actual fact, because we didn't start using funds from the plan until August, that only gives us five months anyway, not up to 12 months.

We've now applied to go to the AAT, so we actually have an AAT case conference phone call in December. When I read things about people seeing a draft of the plan before it gets approved, I laugh. I knew—and they knew—that the very first thing that was going to happen when the plan was approved was that I was going to ask for a review. They didn't ask for more information. They didn't ask why, and these people are making decisions without understanding what the situation is. I cannot put a team in that quickly.

The first thing that happened when Christopher moved to Melbourne was that he got sick. When he got sick—he has a lower threshold. It took about six to eight weeks after he first moved to Melbourne before he was actually not having meltdowns every day. It's only been in the last couple of weeks that we've actually been able to start thinking about putting new workers in. This week we've interviewed four workers who we believe will be able to start working with Christopher. We can't just put all four in at once, because Christopher is not going to be able to cope with that level of change.

I realise this is an exceptional circumstance. I think we've met the exceptional circumstance, which was that there is a very high risk of abuse—we know that from experience. To be honest, I'm just gobsmacked that the NDIA doesn't even listen. They gave us money out of his plan—we actually saw his autism specialist and we asked for behaviour support help, which obviously is going to be ongoing. We also asked her for a letter. The NDIA actually paid for this expert to give her opinion, and now they're just completely ignoring it. I don't know how that works.

That's our story. We're going to go to the AAT in December. I can tell you: this has been the most stressful—I've been doing this a long time; I've had a lot of fights with Christopher over the years—experience working with the NDIA since November last year. If you have any questions, I'm happy to answer them.

CHAIR: I think your explanation speaks for itself, Julie. Thank you again for sharing it with us. It is through these sorts of occasions that we get an insight into the real situations of people within the NDIS. As I have said, hopefully we can do something to improve the system so that this sort of thing doesn't happen in the future. Congratulations on what you are doing for Christopher. Hopefully, what we report on and what we recommend may be able to help people such as yourself in the future. Thank you.

Senator SIEWERT: I just want to go back to this: they did the plan, they knew it was wrong, but instead of fixing it, they say, 'we'll just go and review it'—knowing full well that you couldn't implement it in the first place. Is that correct?

Ms Pianto : Yes. They knew that. That was the thing that got me. I said, 'well, hold on a minute, if you know it's not right—'. The thing is—something which I didn't say—that at that point we were very much: 'Should we stay on the ISP?', because the NDIS doesn't roll out in Gippsland until 2019. So we were still thinking: 'Well maybe, if this isn't going to work, what we should do is actually back out and stay on the ISP, and let the NDIS sort itself out for another couple of years.' But at the point that the plan was approved, we didn't have that option, and I didn't understand that. So the moment the plan was approved, we couldn't have said: 'We don't want to go forward with the NDIS.' So it was basically, the minute the plan was approved—which, as I say, I didn't know that had actually happened anyway—but yes, at that point, we couldn't actually go backwards so we had no choice.

Senator SIEWERT: Obviously, for those that are arguing—and I'm one of them—that people should be able to see their draft plan: there's no point in seeing your draft plan if you can't amend it. If you're only going to be told, 'we'll go and review it', there's no point. You have to be able to amend it, when you see a draft. That is the very definition of a draft—that it's not finalised.

Ms Pianto : And then the second one where—the review of the reviewable decision—they knew that if they only gave us three months, that we were going to have to go to AAT, because we actually said: 'Look, it is just impossible to do that. I cannot do that in that time, safely, for Christopher.' And they knew that if they actually kept to their plan, I was going to go to AAT. But what a waste of money!

Senator SIEWERT: So in that period of time—and we'll clarify the period of time—when you stopped having your ISP, what supports did you have? Did you have equivalent supports to the ISP for that period of time? That is, the period of time when the plan was implemented while you were getting it reviewed.

Ms Pianto : Yes. We've been using the funds that—and we've never argued about the money, the funds that are actually in the plan. With the support coordination, it's a different thing: they were supposed to allocate a support coordinator and they haven't done that yet, and his plan was approved on 15 June. We just had a phone call about that yesterday. But—sorry, I have lost my train of thought there.

Senator SIEWERT: Your ISP and you weren't arguing about the actual level of funding.

Ms Pianto : No, we weren't arguing about the actual level of funding. It was just whether we could actually use that funding to pay family members while we built the team up. And that's the thing that is the major issue for us.

Ms MACKLIN: Julie, can I just ask what the long-term housing goal is? And how is that being progressed?

Ms Pianto : At the moment we haven't been able to progress the long-term housing goal. But the long-term housing goal is SDA. But I don't understand enough about it, and the thing at the moment was that we wanted to actually start the process and get Christopher to Melbourne—because all of his specialists are here, all of his support is here; there are so many more services here. We're not going to use disability service providers to provide his core supports. We're going to recruit and train the staff—and we are plan-managed, by the way. So that's all been working well. The long-term goal is to get him out of a rental property. The house in Thornbury is a three-bedroom house, and has to be because there's one bedroom for Christopher, one bedroom for his brother, who is now his—in quotes—'primary carer', and another bedroom for workers. And the only way that we're able to do that is because I'm actually on the lease and paying some of the rent, as well as my mortgage in Gippsland. So the long-term goal is to be able to work out SDA, so that Christopher can go into supported accommodation in that way. But again, only with workers that we've recruited and trained.

CHAIR: The lady over here on the right.

Ms Dorgan : Hello, my name is Penny Dorgan. I have both physical and psychological disabilities—I would say a dual disability. I entered into the NDIS in 2013 when I was part of the DSR. So I was one of the first recruits to come through. But I was told that they could only assess me on my primary disability and they could not support me financially on any other part of my disability, so I had to choose the physical disability and ignore the mental health side of things as far as support services go.

Also, I have had problems in my third plan, where the actual planner said that my catheter care is now under health and will no longer be funded through NDIS and that that will be taken over by community services health, but they will not pick up the funding either. So now I actually recruit that funding for catheter changes and catheter care and also any of the gauzes and changes of padding that I need to make sure that that is looked after properly. Since that has happened, since that withdrawal of support, I have had four hospital visits as a result of them pulling out, saying my catheter is medical and not part of my disability.

The next thing that I would like to point out is that last October my husband left me because he did not want to do disability anymore and he was my primary carer. I then put in a review to NDIA, but it was considered that that was not substantial enough as a change of circumstance to require a review. I went forward and got an OT assessment of my circumstances to see if I would be suitable for an assistance dog to replace some of the duties that my husband would have undertaken. They wouldn't increase my care loading at all, even though my primary carer had left. They also rejected the request for an assistance dog, under the fact that it did not reduce any of my primary care support needs. My core support needs had to be used less—and to give up some of those—for me to have an assistance dog, even though I have lost hours and hours of support from my husband, having had him leave as a primary carer.

The other thing I would like to say is there have been some benefits as well. I am now able to drive my car with all hand controls. I very rarely take taxis these days and I am able to get around the community independently with my van, which has been a wonderful outcome from NDIA. So there have been some benefits but there are also some deficits.

Senator SIEWERT: So, with your catheter and the four hospital visits, I presume that is as a direct result of not getting the appropriate support?

Ms Dorgan : Correct. It is for infection.

Senator SIEWERT: In terms of you having to pick up directly the cost of the catheter and the gauze and the other needs, do you have a cost estimate for that?

Ms Dorgan : The foam padding that is meant to be under there, I cannot afford anymore. It is $4.80 a piece. If you add that up—and you do changes every second day of the week—it certainly adds up as a very high expense. It is also $4 per nursing visit from community nursing. So, when you have your catheter care or you need your wound checked, that is another $4 that you accrue each time.

Senator SIEWERT: Out of the DSR process, you used to get combined support for your health and disability requirements?

Ms Dorgan : No. Out of DSR I had a very small 'making a difference' package. I had no access to my bathroom to shower for five years. I had very little funding because I was seen to be working, and because I was seen to be working I'd never get up the top of the DSR level where it was an urgent request for funding.

Senator SIEWERT: So, previously how was your catheter treatment funded?

Ms Dorgan : Through NDIA. It has only come about since NDIA.

Senator SIEWERT: Before that you were having to pay for it?

Ms Dorgan : I didn't have one.

Senator SIEWERT: You didn't have one.

Ms Dorgan : Correct.

Senator SIEWERT: Thank you.

Ms MACKLIN: Sorry, I'm not 100 per cent clear. Where is the carer situation up to now?

Ms Dorgan : They've refused to increase my care hours to match my husband's primary care hours—that was rejected.

Ms MACKLIN: Who is providing the care?

Ms Dorgan : No-one. There is a gap.

Senator SIEWERT: When the NDIA first developed your plan, was your husband recognised in your plan as providing your primary care?

Ms Dorgan : That is correct.

Senator SIEWERT: And so it was not seen as a substantial change when he left.

Ms Dorgan : No.

Senator SIEWERT: It was not seen as a substantial change when your primary carer left. You're primary carer left and it was just, 'Oh okay'.

Ms Dorgan : Exactly, yes. I'm pretty disappointed in that.

Senator SIEWERT: I'd say you'd be fully expected to be not just disappointed—I would've thought that was a pretty overwhelming sort of message to get from the NDIA.

Ms Dorgan : I was told I had to wait until my plan had run out and then see if the funding would stretch through to that 12-month bracket, but it didn't.

Ms MACKLIN: Are you in the process of appealing this decision?

Ms Dorgan : I will be going to the AAT in regard to the assistance dog, because I feel that that is a very big role and would help me tremendously in my day-to-day life.

Ms HUSAR: At the beginning you talked about the planner making you choose between your disabilities—which would be funded and which wouldn't be. That is something that is consistent throughout all of our enquiries—we hear that. Did you develop your psychosocial disability as a result of having a physical disability?

Ms Dorgan : Yes, I did—correct.

Ms HUSAR: That being the case, were they able to put any supports in place to support you?

Ms Dorgan : No. There is no funding that they would recognise towards the psychosocial.

Senator SIEWERT: So, you also have to pay? Do you have some supports for your psychosocial disability, and, if so, do you have to pay for it yourself?

Ms Dorgan : Correct.

Senator SIEWERT: So, you have to pay for your health issues; you can't pay to replace your primary carer; and you're having to pay for your psychosocial disabilities.

Ms Dorgan : Correct. And we don't get a draft down in Barwon either. A drafted plan is automatically sent out to you in the mail, and there's no discussion.

CHAIR: Thank you for sharing that with us, Penny.

Ms Law : I am Sonia Law and this is Hollie Kerwin. We are here on behalf of Victoria Legal Aid. We are here because we want to bring to the committee's attention some cases that we're seeing of clients with complex needs who are getting stuck in prison as a result of NDIS service providers terminating contracts and where there is no other service provider available or willing to provide the services in their NDIS plan.

We provided two case studies, based on these clients, in our written submission, which we filed but which was filed a bit late. It might be helpful for the committee to reference the submission while we're speaking. I wanted to draw your attention in particular to one of those cases, a young man called Francis. It is on page 4 of our submission. Francis is turning 20 today. He was a client of the Victorian Department of Health and Human Services for a number of years before he transitioned to the NDIS. He has an NDIS plan with funding for 24-hour support in his home, but on 16 September he was arrested after an assault. While he has been in custody, his service provider withdrew services under the plan. He hasn't been able to obtain bail and he remains in custody. While there has been some indication that services might be available in February or even in December for him to return home, there is no confirmed date for that at this time. He is not coping well in jail; he finds the environment very distressing and frightening. He's quite vulnerable and at risk of violence from other prisoners. Because he's distressed, he's been hurting himself in custody and has been subject to greater restrictions like handcuffing when he is out of his cell. The trauma he is experiencing is likely to have a long-term effect on his ability to live independently. We have seen him go backwards in the time he's been in custody. It will impact on his future when he is eventually released.

A person in his situation would not usually be in custody as a result of the criminal justice circumstances. Ordinarily a person in his situation would be charged and then bailed. The offences are not serious enough to attract a custodial sentence on conviction for someone, like him, who doesn't have prior convictions and is quite young. For this reason his Legal Aid lawyer has been liaising a lot with the Department of Health and Human Services and also with the NDIA to see what can be put in place, so that an application can be made for bail. It's been clear in our interactions that neither the department nor the NDIA considers that it has responsibility to make sure that those services are in place for him. The department has described its role as Francis's landlord only with no responsibility for service provision; and the NDIA has described its role as only to provide funds—it's a bank. No-one seems to be responsible to ensure that those services are there for him.

Francis is one of four cases that Victoria Legal Aid has seen in the last month of people in the criminal justice system with significant intellectual disability who have NDIS plans but can't attract a service provider and, in some cases, can't attract support coordinator as gateway for the rest of the services that they need. We consider the circumstances make it likely that there will be more of these cases in Victoria and in other states in the future. We know of three other cases in New South Wales at the moment where people are unable to exit custody solely because of a lack of services in their NDIS plan. One example is an Aboriginal woman with an intellectual disability who lived in a group home. She was transitioned to NDIS; she was arrested and ultimately convicted of offences; at the end of her minimum term she was unable to secure housing and support services funded in her plan. So she couldn't get parole and she ended up serving the full sentence. When she was released to the community, she walked out of the prison with nothing in place—no accommodation and no services available.

What we are seeing is people like her and like Francis being transitioned into the NDIS, despite the fact that there are no actual services for them. As soon as they're transitioned, the support that was previously available to them just disappears. Given the vulnerable nature of these people and the particular significant detrimental impact on them, Legal Aid feels there needs to be immediate action by the NDIA or the Victorian government to ensure immediate service provision and the availability of a provider of last resort for people like Francis, who can't access support, even though it is funded, and who are suffering significant detriment as a result. It may be that this market failure is not absolute and that workforce and skills can be developed or that pricing changes so that, ultimately, service providers are available, but there needs to be an interim solution put in place so that people like Francis can receive the services they need and be bailed back into the community.

CHAIR: It reinforces what we have heard on a number of occasions now from the Public Advocate here in Victoria, who raised one particular case but has indicated to us that there are other cases, which may well include the one you have raised. I think I can say on behalf of the committee that this is a matter of concern to us. There has to be some resolution. People are caught, effectively, in no-man's-land, where nobody's taking ultimate responsibility for a situation which they shouldn't be in or shouldn't be left in, in this circumstance.

Senator SIEWERT: AFDO's following this up very strongly as well, and we've heard from them on a number of occasions.

Ms Law : It's great that it's on the radar.

CHAIR: It is, and thank you for reinforcing it. George, you're next.

Dr Taleporos : I am the policy manager with the Summer Foundation and just wanted to say that Penny's story is one that we hear all the time around people who have complex needs. That might be related to their disability and to their health. They are told by the NDIA that, effectively, it's a health responsibility. I understand that the NDIS was never intended to solve every problem that a person with a disability has. We understand that. But as we move to what we call the new world what we want to see is better outcomes for people. Better outcomes means that a person with a disability—regardless of whether it relates to the health system or the education system or, as we are hearing here, the criminal justice system—is not sent on a merry-go-round about where they need to go to get their support.

For that reason, we need the NDIA and COAG to come together and think about what this could look like so that people with disabilities don't have to be on that merry-go-round. Does it, perhaps, mean that we acknowledge there is a reasonable and necessary support need here and that the government and the agency and all of the others, like education and health, need to come to an arrangement and understanding that they will fund that and work it out? It shouldn't be up to the person with a disability to advocate over and over again with the health department or the education department or the criminal justice area. It should be sorted out by the government bodies that have that responsibility. The outcome we want is for people's reasonable and necessary needs to be met. Ultimately, a person with a disability doesn't need to know who's funding it. We don't care who's funding it. We just need the support to be provided. That's what I wanted to say about the interface issues.

The other issue I wanted to raise—

CHAIR: Before you do that, Senator Siewert has a question.

Senator SIEWERT: It's an issue I've been following up. In Canada I was recently talking about mental health. A point that came out during our discussions was that they have a 'pay first, fight later' approach. Exactly what you just said happens. It was described that a person gets the services and supports, and then the agencies fight it out. It's not up to the person to fight it out with the agencies.

Dr Taleporos : They understand that that works quite well, and there's no reason that we can't have that here. I would advocate strongly that we look at having that system here. You can imagine what it would be like for someone with a high-level disability to become ill and have to go to hospital and then be told by the NDIA, 'We're pulling out your services.' In that whole time, they have developed relationships with people who know how to support them, but, because it's a responsibility of the health system, all of a sudden they're not going to have the support that they need. Let the systems work it out in the background to ensure that people continue to receive the support that they need. So thank you, Senator, for that. Maybe you can make that happen here in Australia. I would like to see something similar to that here.

The other issue, which I know that some of you are aware of, is that many of the people that we work with and that we support need access to Specialist Disability Accommodation payments. We are not seeing SDA payments appear in people's plans. In fact, many of the people that live in the Summer housing developments are being told that they are no longer eligible for SDA payments. We're a bit concerned that, unless we see payments in people's plans, developers will not come to the party if they know that there isn't going to be demand. Obviously, there is a huge demand for housing, so it is essential that the NDIA come to the table and put payments in people's plans. I think it is really important that that starts to happen.

Ms MACKLIN: Just on that last issue, George: you're saying that this is a change, that people are no longer getting access to SDA payments in their plans? Has that changed from earlier or has that always been the case?

Dr Taleporos : I will clarify that. In the Hunter area, we built apartments before the SDA had been developed as policy. As you know, it took about three years for the SDA to become policy. We were advised by the NDIA that the people who were going into our apartments would be eligible for funding. Now we are hearing that they are likely not to be eligible, and so there are some real concerns around people effectively no longer being able to stay where their homes are. Another systemic issue is that, unless people start getting the payments in their plans, developers are not going to develop. It takes two or three years for housing to be developed. In the rollout, it is essential that where people have a reasonable and necessary need for housing it appears in their plans; otherwise, the market will not provide.

Ms MACKLIN: That's right. Rosa indicated that right at the start. When you and the Summer Foundation raised this with the NDIA, what was the response?

Dr Taleporos : Effectively, we have been given the run-around in terms of this. We have been trying to sort this out for the last 12 months or longer. At one point, we were told that someone was on leave and they will sort it out when they got back. Then we were told, 'We need to do a review of their plans. Once that's done, we'll sort it out.' It has been 12 months. The first rollout was in Newcastle. People have been there for over 12 months and still no decisions have been made, except for a couple, about putting the SDA in their plan. I didn't want to focus just on that. I wanted to say that it is a systemic issue. When we looked at the figures in Senate estimates back in, I think, July, only $100,000 had been spent on the SDA. How on earth is a market going to develop if it doesn't see some real funding going towards the payment for housing?

Ms MACKLIN: So you just can't get a straight answer?

Dr Taleporos : No.

Ms MACKLIN: On the health issue, as you know, the way that the act was established with other areas of insurance, like transport accident and so on, the way it's been set up is that the National Disability Insurance Scheme will pay while you sort out your other insurance issues. It seems to me that one of the options here could be that a similar approach is taken, especially in areas like those Penny outlined, where it's plainly reasonable and necessary to have catheter cleaning and all the associated things Penny needs billed by the NDIA to the health system of the relevant state in the same way as transport accident or some other insurance. If you have accident insurance and you have an accident, they should pay. That's always been the philosophy. I would've thought a similar approach could be taken.

Dr Taleporos : I think that's an excellent idea. One of the things that we advocated for when we started on this journey with the NDIS was that for people with disabilities it wouldn't matter how you had acquired your disability. Whether it was in a car accident or whether it was a genetic outcome, it wouldn't matter; you would still receive reasonable and necessary support. If it's working for TAC, why can't we use that for people who aren't part of TAC but who are part of the NDIS? I highly support your recommendation that it would work the same way.

The reality is that if people are not receiving proper catheter care this results in higher costs, firstly to the NDIS, because they need more support and one-on-one care because they're unwell. Also, if they end up in hospital, they are taking up beds in hospitals, and that's costed mainly to the health system. So the current arrangement is not benefiting the government financially. It's actually causing damage to the budget. We need a system where it doesn't matter—the government will fund it and then the appropriate parts of government will pay each other what they owe each other, as in Canada or as you recommend. I like both ideas. I'd be happy with either of them.

Ms MACKLIN: You've also got some data, I think, on the number of people who are ending up in aged care because there's nowhere else for them to go once they leave hospital. I think that too would lend itself to this approach. If the Commonwealth feel the cost of the increased aged care, they might find that they are more inclined to fix this problem in disability housing.

Senator SIEWERT: Isn't the problem there, though, that they'll only pay the ACFI fee. They won't pay anything above ACFI, so they're not actually feeling the pain there. I accept they're paying ACFI, but they're not paying the true cost of care. That's my understanding, from some of the recent estimates answers we've been getting. Is that a correct understanding?

Dr Taleporos : I believe that's so. I think the government has committed to paying the RAC fees but I believe there are some limitations around that commitment.

What I think is also really important to remember is that, while we sort this out, we know that in the rollout areas more and more young people are ending up in nursing homes. We are not getting the outcomes that the NDIA promised with respect to reducing the number of people in nursing homes, and we advocated for this. One of the key groups that we wanted to see benefit from this was young people trapped in nursing homes. In both Barwon and the Hunter Region, we've seen an increase of 20 per cent of young people in aged care. The system is failing them in the trial sites, and it concerns us greatly that we'll see that replicated across the country as the rollout continues. We know that's not what we were promised when it comes to young people in aged care.

Senator SIEWERT: I want to go back to the point you made about the termination of support services or packages when someone goes into hospital. Is that what's happening or is that what you're worried will happen?

Dr Taleporos : That is very much what's happening, and it's been very traumatic for people. I think the way it's not been happening is if the NDIA doesn't know about it. We say to people: 'If you go to hospital, keep it quiet. Make sure the NDIA doesn't find out, because the first thing they will do is cut off your supports.' It's essential that people, effectively, hide that information from the NDIA. That is entirely unacceptable. People should not have to hide their circumstances, and people should not have to be afraid that they will be found out.

CHAIR: Thank you very much, George. I want to thank everyone for coming along this afternoon and sharing your experiences, observations and reflections about the NDIS with us. As I said a couple of times today, hopefully, we can help make some improvements to the system through the recommendations and reports we will make to the parliament, which will hopefully be adopted by the government. Thank you very much for your contribution. Thank you to Hansard and all those who've assisted today and, on that note, I declare this hearing closed.

Committee adjourned at 14:52