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Joint Standing Committee on the National Disability Insurance Scheme
National Disability Insurance Scheme oversight

ALACH, Ms Tasha, Autism Association

ARBERY, Ms Brooke, Private capacity

ASTBURY, Mr Rodney, Chief Executive Officer, Western Australian Association for Mental Health

BERGGY, Mrs Jane, Intework

BURROWS, Mr Matthew, Chief Executive Officer, Therapy Focus

BUTT, Ms Megan, Disability Advocate, MIDLAS

FULTON, Ms Kate, Executive Manager, Organisational Development, Perth Home Care Services

HOLYOAK, Ms Bronia, Valued Lines

LYNES, Ms Helen, Executive Manager, Business Development, Richmond Fellowship of WA

MAUGER, Mr Shane, Activ Foundation

O'MEARA SMITH, Mr Justin, Rise Network Inc.

PRATTS-HINCKS, MS Carmen, People with Disability WA Inc.

Sarah, Private capacity

SEEKEE, Ms Diane, Intework

SHAPLAND, Ms Susan, General Manager, Multiple Sclerosis Society of Western Australia

STONE, Mrs Lynette, Private capacity

TAPSELL, Mrs Christine, Private capacity

TAYLOR, Ms Cheryl, Private capacity

THOMPSON, Ms Natalie, Private capacity

CHAIR: I now welcome NDIS service providers for the Perth Hills NDIS trial site. Information on parliamentary privilege and the protection of evidence has been to you all. I remind those contributing that you cannot divulge confidential, personal or identifying information when you speak. If you wish to supplement your evidence with written information, please forward it to the secretariat after this hearing.

I am very much aware of the time constraints. We are running well over time as a result of our extended session with the Western Australian government officials. I plead with you that if you have long statements, we will take them in writing. We want them. But if you could come to the points that you wish to make, whether they be positive or commentary to help us in our deliberations, so that we can get to the crux of the matter and hear from as many people as possible. With that plea, we open it up to whomever would like to provide us with an insight.

Mrs Berggy : I have a few statements around the NDIS and ADEs. There seems to be a lot of confusion in the ADE world about how they fit into the NDIS. There is a feeling of being left in the dark and not quite knowing what the answers to the questions are. There is toing and froing—'Go and speak to DSS' and they say, 'Go and speak to NDIA' and NDIA say, 'Go and speak to DSS'. Some of the concerns we touched on yesterday were around the average funding dollar for a new participant into the NDIS which would be based on the organisation's average of the funding levels.

CHAIR: We will follow that one up on your behalf.

Mrs Berggy : That is quite concerning because that really does not fit with individualised service. The other point on which there has been no clarification is that if we have a supported employee and we have an employment contract with them, the same as our other employees, how does that impact when they are also our customer because they are paying us to give a service? There are a lot of question marks around how organisations deal with the fact that we have an employment contract with them but they are also paying us to deliver a service.

CHAIR: Who have you sought advice from to date with regard to that?

Mrs Berggy : DSS and NDIA, but nobody seems to have the answer to that.

CHAIR: Have you been given any responses in writing?

Mrs Berggy : Not in writing. I do believe it has been brought up by the ADE NDIS committee. But as yet there are no actual answers.

CHAIR: Leave it with us and we will certainly ask the questions ourselves.

Mrs Berggy : If we have people who are on an employment contract but they are also a customer, that cannot quite negatively impact on a business's sustainability when ADEs have contracts that they have to fulfil, if there is the chance that employees can get up and walk with their dollar. There is no security for ADEs in regard to business contracts. That is of great concern.

The other big question we have as an organisation is that we have not actually signed up for NDIS in Western Australia. We would like to know how planners are being fair and equitable when they are referring new people to ADEs, because that is not there. How do they know about us if we are not actually signed up to the scheme?

CHAIR: You as an individual or the state not having signed up?

Mrs Berggy : Us as an individual organisation. Some organisations' ADEs have signed up—

CHAIR: You are not a registered provider—is that what you are saying?

Mrs Berggy : No and we chose not to sign the service agreement with DSS specifically because our numbers would be capped for the whole organisation not just in the trial site.

CHAIR: We can probably answer that but, rather than do that because it is not our job to do it, we will ask the agency to address that directly this afternoon and provide some feedback.

Ms Berggy : The other point is that ADEs are not sure how we are going to go forward after 1 July this year with the new contract and how funding for supported employees will be looked at in the future. At the moment there is this average pricing discussion and if they are currently an employee they will go straight over with their current funding. But in the future, and under a new funding agreement with DSS, what happens when we want to review somebody's funding level because of a change of circumstance or something like that?

CHAIR: Again, we can put that to the department on the basis that there is concern about financial viability, staffing and leasing issues and ask whether they can address the issues and have information provided as soon as possible—rather than trying to give you answers here when we are not in a position to do so.

Senator REYNOLDS: Can we get some more information about the capping?

CHAIR: Could you put to us in writing the specific issues around the capping?

Ms Berggy : Certainly.

CHAIR: Rather than us second guessing some of it, that will help us to facilitate the questions that we are seeking for you.

Ms Berggy : Most definitely. Thank you.

Ms Lynes : I work for the Richmond Fellowship, which is an organisation that provides community based mental health services and transitional accommodation services but also outreach services mainly for care coordination and also training and recovery and support groups that help build people's recovery and self-efficacy—most notably Hearing Voices Network Australia.

Richmond Fellowship has a program in the Perth Hills trial site and there are a number of issues that I would like to raise today. One of them is to do with how people are finding out, and the kind of expectations people have, about what they may or may not be able to receive from the NDIA. For example, a lot of people in the mental health space do not know very much about the NDIA. I am talking about people with a lived experience. There are people who do know about the NDIA but it is becoming clear as time goes on that there are really very unrealistic expectations about their capacity to receive any kind of plan from the NDIA or the kind of plans that they may be able to get. One example is that one person was hoping that they may be able to get some support to go to university and get a licence but subsequently found that they were not eligible. Also, people are getting on to plans but the plans seem to not specifically address issues that really facilitate people's recovery.

I will go to the issue of applications and eligibility. Richmond Fellowship is currently working with three people who are on a plan. All of those three people are people who have other primary disabilities and secondary psychosocial disability. Those people were already connected to the local area coordination services. There are also people who are with the Richmond Fellowship PhaMs program who have applied to the NDIA and those people were not successful on the basis that they were not considered to have a sufficient functional disability. From Richmond Fellowship's perspective, the people in question did require significant psychosocial support. Here I am talking about support that actually enables people to build the skills, efficacy and confidence to be able to do things for themselves—for example, learning or re-learning how to use public transport or building confidence to shopping by themselves.

CHAIR: Helen, are you suggesting that when they were with a planner and they were rejected that their psychosocial issues were not taken into account?

Ms Lynes : That is right. That is certainly one element. The other was—

CHAIR: So you are saying that, in you view, if both their physical and their psychological issues had been taken into account they should easily have qualified for the NDIS?

Ms Lynes : No, my understanding is that it was because they were not considered to be functionally disabled enough to be eligible.

CHAIR: That is your take, but that is not an element or a design of the system. Did they go through a process of review, that you are aware of?

Ms Lynes : I am not aware of that. I would need to follow up about that.

Ms MACKLIN: To follow that point—Helen, this has been a big issue that the NDIA is aware of. Louise, when you come up later it might be useful if you address this and explain to everyone how you have managed that nationally, because I understand there has been a big review of the number of people who have been rejected in the way that you describe, Helen. People have been brought into the scheme as a result of the review that the NDIA has conducted. I think that, as Mal said, it is not for me to make that point, but I think it would be helpful if Louise from the NDIA described that. I think it would be useful, Helen, if you were able to provide a little bit more detail. Maybe you could put the point you made in writing to us—that people are not getting what they need to help them to recover. I think it would be helpful if you could flesh that out to us in writing.

Ms Lynes : Yes, I certainly will. I also want to add one of the other issues that has come up in relation to eligibility. I have been informed that the people who made the application were told that they needed to have a stabilised condition that had been clearly diagnosed, and that they have had that condition for five years or more. As you would know, one of the issues for people with serious mental illness is that their diagnosis can change over time. I have known people who were initially in Graylands for a long period of time and have been living in the community since the late 1990s, who have had up to five diagnoses over that time. That is a significant issue that is getting in the way of people being able to successfully achieve a plan.

In relation to one of the people who has received a plan and has another primary disability—that person has elected for a Richmond Fellowship staff member to care coordinate their plan because their plan has many different dimensions to it. It is a $33,000 plan, and Richmond Fellowship has been funded for $1,400 for 10 hours of care coordination and already, because of the complexity of the person's situation, it has taken 30 hours of coordination, and there will be more.

Given that FAMs is currently a block-funded program, obviously some of the complexity of that work has been absorbed by the organisation. But in future, once FAMs folds completely into the NDIA, there is a considerable question about how that sort of activity would be sustained.

CHAIR: Again, have you gone back to the agency and put your point about the period of time that you have used already?

Ms Lynes : I will need to follow up on that, actually. The other question that has been raised is because the person who the family has asked to do the care coordination is a key worker, the person has been advised by the NDIA that that is not a satisfactory situation. They see that as a conflict of role for the person to have a key worker who is also doing the care coordination. I just wanted to raise that, because one of the issues for people who have often been very stigmatised, marginalised and are dealing with complex systems is that they choose someone they trust. That is far more significant to them than the label that they have got on their position.

The other issue that has come up, and was raised yesterday, is that the pricing for the work provided much more closely matches baseline disability accommodation support where, for example, you just take a person shopping and help them with their shopping. But the type of the work we are talking about in psychosocial disability is of a much more complex nature, and it involves empowering and equipping people to be able to take charge of their lives again. So that raises a question about the fact that the NDIS is based on the insurance model. It seems to make absolute sense that the priority would be to actually resource people to build their capacity to do things for themselves, rather than create long-term dependency and have others 'doing for' them all the time, which in in the case of psychosocial disability has proven to be a much more disempowering way of working and tends to build people's marginalisation.

I did want to mention, as I mentioned yesterday, that Richmond Fellowship has been funded by a grant that is part Commonwealth funding and part state funding to run what is called a targeted customised information project, tailored to the information needs of people with psychosocial disability. In relation to people needing to know more in the area, I recognise that the NDIS and the Disability Services Commission are really trying to address that through the funding of programs such as this one.

Thank you very much for letting me speak.

CHAIR: Thanks, Helen—appreciate that. Over to my far left there.

Ms Alach : My name is Tasha Alach; I am from the Autism Association. I just wanted to make three brief points about where we as a service provider would like to see more work done in relation to therapy packages. The first thing is early intervention. For example, we have plans coming through where, after we see the child and have our clinicians do our formalised assessment, we are identifying that they actually require a higher level of support than the plan has allocated. I think there maybe needs to be more training of the planners around how to make an assessment of the level of need when allocating those transdisciplinary packages. It is very inconsistent. We will see children who have got level 1 transdisciplinary packages but, when we do our assessment, we find they definitely have a higher level of need; and then we will have other children that come through that require less support in relation to therapy services but are getting a higher level of funding. So I think there needs to be more work done on the consistency in the allocation of transdisciplinary packages. We are really happy to continue working in collaboration with NDIA to do some work around—

Ms MACKLIN: Is that happening? Are you taking that evidence back to them—

Ms Alach : Yes.

Ms MACKLIN: and toing and froing?

Ms Alach : Yes.

Ms MACKLIN: And is that productive?

Ms Alach : I do not find it is productive, and it is difficult to say that because I do not want to start having fewer families sent to the association. But we do believe that those conversations are not productive and—

CHAIR: When you say they are not productive, Tasha, are you saying—and these are my words, not yours—that you are spending the time with the agency but you do not believe you are being listened to?

Ms Alach : I think the agency is busy, I think it is difficult because there is an expectation that the planners have that knowledge and I think there needs to be collaboration with the service provider to be able to get a plan that is effective for the family.

CHAIR: So, when there is a plan to which, in your view, there have been too many resources allocated, do you go back to them then as well to say—

Ms Alach : That is a good one. Well, no, and the reason we do not go back is that I think all families, especially in early intervention, of children with autism need as much funding as they possibly can have. So, whatever funding we get, we will use that to best advantage that child and their family, but—

CHAIR: I appreciate that and I acknowledge that. But, at the same time, you said a moment ago that in your professional opinion some people's allocation of services is greater than they need; and I think that, from a credibility perspective with the agency, you need to go back and say, 'Look, you do not necessarily need to allocate quite that much, and this is the reason why.' Then they can see that it is not all one way.

Ms Alach : I understand. It is not so much that the allocation is greater than they need. What I was trying to say was that, in relation to the levels of transdisciplinary packages, it is not the right fit with what is in the model being presented by the NDIS because, in my experience, families in early intervention need more funding than the levels in the packages.

CHAIR: I understand where you are coming from. Obviously, you get the point that we have made—

Ms Alach : Yes.

CHAIR: so please continue. Sorry, Jenny has a question.

Ms MACKLIN: Once again, I think it would be useful, to make sure that this whole session is productive, particularly for the children you are concerned about—and given that that is the primary concern for all of us—if the agency could suggest how this interaction, the toing and froing, between the NDIA here in Perth and the Autism Association could be better, in the interests of these children.

Ms Alach : Also, it is very hard for a planner who does not have a clinical background, who maybe has come from an administrative background, to be able to make a decision about the level of therapy needed for that individual child when they come into that planning meeting, especially for children with autism. If they are high functioning, their level of need is not immediately obvious; and often families do not have the understanding to be able to communicate the impact of that disability on their children's functional abilities. One of the difficulties we are finding as well is that children that present as high functioning could have significant impairments across their lives that impact the individual child but also the family.

I have two more quick points. One is the misinterpretation of transdisciplinary packages. I think we need to do some more work around what 'transdisciplinary' means. Over the years, our association have worked quite hard on developing a transdisciplinary model of intervention, so it has been really great to see that that has been rolled out in the NDIS. We developed that because it was very difficult for families, especially in early intervention, to get a plan from a speech pathologist, a plan from an occupational therapist and a plan from a psychologist, and try to incorporate all the different therapy goals into their daily routine. So we developed a robust model where there was one key contact for the family who integrated all the clinical goals into a functional program.

In relation to transdisciplinary packages, I think at the moment we are seeing plans come through where some of them will be just transdisciplinary, which is great; some of them might have transdisciplinary and additional therapy items if the family has a private therapist; and some of the ones coming through recently are saying, if they have a transdisciplinary package, that that can be subcontracted out to a private therapist. What I am trying to say is that it is just becoming confusing, how we implement that model. I think there needs to be more work on: why is there a transdisciplinary package, what are the benefits of that model and what does that look like when we are developing the plans?

My last point is about the transition to the NDIS. At the moment we are doing a lot of work with families that are having difficulty understanding how to start the process with the NDIS. So we are doing a lot of work in supporting families to understand what the NDIS is, to help them complete the access checker and fill out some of the paperwork that is required before they go their planning meeting. We are very happy to do that, but I do not think it is sustainable in the long term. Some of those families require 15 to 25 hours of support to transition into the meeting with the planner. We have had the Autism Advisor Program in the Autism Association, so we have been working with families for a long time to understand what they actually need to develop their capacity to link into local community supports and to understand different funding models. I just wanted to make the point that there is a lot of work being done at the provider end to support families to transition to the NDIS.

CHAIR: Which at this stage is unfunded?

Ms Alach : Yes.

CHAIR: Thank you—appreciate it, Tasha.

Mr O'Mear a Smith : Rise Network are an established provider in the footprint of the NDIS. There are probably just two points that I would build on. Let me preface by saying we know it is a trial and by a trial it is a cold start and we are trying to learn as we go. We are seeing plans improve, which obviously is a reflection of the learning that is going on inside the agency. That said, I think there is some concern from us as a provider. Some of the concerns we see for the people we support are around the amount of time and support they get in the planning process. We can accept that ILC tier 2 has not happened yet and that when we go to full scheme what we are experiencing now will likely be less of an impact, but we are seeing families that are getting a couple of hours of time with a planner they have never met. They are families who are used to having a relationship with an LAC, and the building of that relationship builds the trust and the understanding that really is needed to build a robust plan that will work.

What happens when we see the plans is that we spend a significant amount of time—for some plans 10 and 15 hours—trying to unpack what our role is in the plan, because the assumption would be how quickly the plan has been put together, to understand the difference between what a natural support would do and what other mainstream providers would. So, when we understand the support that a family with complex needs or an individual who is living by themselves would need, I am not confident that we are getting the amount of time in the preplanning and the planning process. That means that the plan really is ready to go. Obviously we are still struggling to understand what our role is in all of that, and that is the nature of the trial.

I think that something has been lost in the planning and support coordination when there is time in planning but not necessarily the time in the support that we feel some families would need. That might be borne out by how long it takes for a family to find access to service providers after their plan has been approved. Recently we have seen the first published dates of where people we support have had their plans approved. They go back many months, and we are only just getting contact with those families telling us that they do have a plan approved. The nature of the scheme is it puts the responsibility on the family and the participant to make contact with providers. I think that that probably puts power, choice and control in the hands of the people and of the participants, but they may not have the support they need to use that power, choice and control. What it means then is that there is a significant gap between when their plan is approved and when they commence services. The assumption is that with a stronger support part in planning and support coordinator that time could be broken down.

CHAIR: Could you flesh out what you mean by support? If the individual who is doing the plan—the planner—only has a limited knowledge of what is available in that particular area and that particular field of disability, the amount of time that they spend, if it is only their knowledge they are drawing upon, is not going to make much difference.

Mr O'Merea Smith : I think it is about bringing a few more people to the table and taking a little bit more time.

CHAIR: How would you suggest they bring additional people to the table?

Mr O'Merea Smith : I think it is about taking the time. I heard Dr Chalmers speak this morning, and one of the questions asked was about how long it takes to put a My Way plan together. I think that a good plan cannot be put together in a couple of hours and without some ongoing support. I wish I had the answers. At the moment, really I just have the questions. I think that, when we have worked traditionally with accessing new services and with new people, it happens over a period of time. The person has an individual package. We have a brokered connection with that person through an LAC or an options exploration person. It takes the time, and the families need the support to task providers what they have to offer. From a provider's perspective, they need time to really understand what the person's needs are.

It is a trial. Things are early. We are seeing improvements, but I do think we are seeing some significant gaps and delays. One simple example would be that a family were receiving services from a number of providers, and they were individualised day supports. The family then got their plan. They thought that the agency would then connect them with a provider. That was not the case. Many months have gone by. By the time the plan was really reviewed for what it was, the family did not understand that they had now accessed group supports rather than individualised supports, because the only way it made it clear it was a group was by the package number, and the package number is not a number the family is going to be looking for through the pricing cluster to try to see. In the narrative it says day supports, but in the cluster code it says group supports. So now, many months on, they have been under the misunderstanding that they were getting four days of individualised support.

CHAIR: That is a good example.

Ms MACKLIN: Communication is plainly an issue. I think it would be useful for the agency to respond to the issues you have raised. They are very good issues.

Mr O'Merea Smith : The other point I wanted to make was around transport. It is transport from a participant's side and also transport from a provider's side. Families that are transitioning into the scheme lose access to the mobility allowance that they were using well to meet their transport needs. Many families are much worse off with the level of funding they are getting for transport. We understand that, when the scheme goes national, the transport dollar really needs to meet the needs of a much more significant number of people; but, when we think about the true impact that has on some of the families that live in the beautiful Perth Hills, there is a paucity of supply of public transport. The indirect cost that is not funded for a worker to arrive at a family's home is significant. I do have concern that there will be significant gaps in access to services where people who used to have a mobility allowance will now have a much smaller allowance and that some families that are self-managing that do not really have the understanding about how that really works. But we understand that the NDIS cannot take responsibility for the disability impact of mainstream services. But, if there is one bus in a small country cluster in the Perth Hills, it is probably less urban and more rural by its nature and we may not necessarily be seeing that picked up. It is early days, so we have to see the full evidence, but some of what we have seen as a provider is a prohibitive cost of unfunded transport for us.

CHAIR: Have you had an opportunity to put these points to the agency?

Mr O'Merea Smith : Yes we do. We have a productive relationship with the agency. We are working through this with them. They have been very good about accessing one point of contact for our questions so we can run scenarios on that. I would certainly say that, when we are talking about relationships, there is a healthy and productive relationship between the agency and providers. We also through National Disability Services WA have a forum where we get together regularly and share our experiences. Some of that is around transport, price and other matters. So we are bringing it forward.

The real issue is how we support families to access the supports they are looking for. If they have got a two-hour community participation activity on a Saturday to go to a swimming pool and they are not funded for transport, we are responding to that by saying: 'We will park the car at your house and we will catch the bus,' because that is the way we are going to build the skills for greater independence. With time spent on the bus to the pool, a complex disability change and in the pool, there is not much time in the pool. I think that if we are not providing funding for transport then we probably need to accept that the service time that the participant would have would need to be much longer for them to have a meaningful activity. If we start to weigh up what that costs per hour against a little bit more funding for transport, I suspect the numbers would show that funding good transport will reduce costs of services in the long run and will generate much better outcomes. From a provider's perspective I can tell you that transport is a significant issue.

The final point is on relationships again. As a service provider we have one point of contact with Disability Services through the sector development coordinator. That means that we build on a collective knowledge of what it is that we have experienced together, so the conversations are much briefer and much, much more productive. Unfortunately that is not a model that has been adopted through the NDIS, which means that we are phoning a provider code number and we are not building on any body of knowledge. This means that something is lost again. From a provider's perspective time on the phone is money, and we want that time on the phone to be really productive time. When we are meeting a cold-call response, again I think something is really lost. If we are looking for a sustainable sector for the future it is about the agency learning from us, us learning from the agency and the people we support benefiting from a collective knowledge rather than having an on-off start each time.

CHAIR: Thank you . They are very good points.

Mrs Seekee : Dianne Seekee from Intework in Midland. I am a program manager. The point I wanted to put across is similar to Justin's. I understand that it is a trial, but we have many participants who are existing participants. I think the process that they are going through to sign up for their plan and potentially knowing the process to go further is missing. We have examples of participants who have their plans potentially on their kitchen table or under a phone book or still in their car, and they do not know the process—they have not been led to understand the process of how they engage services. A lot of them, because they are currently funded under the Disability Services Commission, think it is just the status quo—that they will continue with their current service provider. Similar to Justin's example, we have had participants who use two agencies, and there is often no communication between the two organisations because no-one is aware of what is going on. We have participants that we have had for over 20 years who have just gone through the process, and it is only from conversations that we have had. Although we speak to them regularly about: 'Have you met with the agency yet, and have you been going through the planning process?' they still do not even understand that they can take current service providers with them to the table to have discussions. They are unsure of what they do after the time, so there is just not enough knowledge handed to the participants.

Sometimes they have ageing families as well that are unaware of the process themselves. I recently had a young lady who came through to us. She lives independently and her father is a very well-educated man who has been in the health department for many, many years. Even he came in and said to me: 'This is for my daughter, who lives independently. I cannot understand this process, and I am a very well-educated man. So what is the likelihood of her being able to continue as an individual unsupported and going through that process?'

Ms MACKLIN: Diane, what would you suggest might be a helpful way to address the problems you have identified?

Mrs Seekee : From experience, and I have been in the sector for some time, the LAC model because of the relationships that are built as opposed to their potentially having an hour-long meeting with planners. I am not saying that the planning process is good, bad or otherwise, but I think it is about relationships, and I understand that there are a lot of people that they have to get through the system. But I think that in our current WA model, where we have relationships in the LAC world, people feel more comfortable. People know that the LAC, or the team of LACs, knows their stories, knows their lives, knows a bit more about them to proceed.

CHAIR: Thank you. The gentleman up the back there.

Mr Mauger : Shane Mauger, Activ Foundation. Just to add to and probably reiterate what my colleagues have said, in the first part, we are getting very good support from the NDIA and the members in the local region. We are finding a real willingness to engage from Marita and her team, and a real openness about that. What we are not seeing, which is the difference Dr Chalmers spoke about this morning, is a level of delegation and an ability by Marita and her team to be flexible in order to respond to what is happening locally.

To build on what the previous two speakers have said, people have had an LAC for 10 years or 15 years, and that person has been removed. A planner is coming in. Unlike at the previous sites, where they have gone from block funding to something new and they recognise something has systemically changed outside, families are expecting the same experience and the same sort of knowledge coming through—so the families see a continuation. But there is saturation with the NDIS about how systemically different it is at a service delivery level; so, at an experiential level, families are not seeing that.

We have many examples of where people are undergoing a plan but we are not finding out for two weeks, three weeks, four weeks, five weeks after that. They are turning up and they have already got a plan. They have gone through an ADE, they have picked up other services. It is only through an aside conversation that we are then being engaged. Again, the individual is not aware of that change, and they are assuming that Activ is well aware of that change because that is what they were used to previously. So there is saturation of what the difference it is. I am very confident the NDIA is telling families and informing them, but that is just not sinking in because they are so enmeshed in where they are at.

Under the current system with the NDIA, what we do like is the fact that it does acknowledge the PMs and penalty shifts. But what we are not seeing in the plans coming through is alignment with the modern award. Now, we are 60-year-old-plus agency and we have a lot of legacy issues as a result of that. With that shift from one system to the other, new participants are coming to us with plans and they want one hour or two hours of support, but under our legacy models we cannot do that because they do not align with the modern award. So, to the families that want service and a change of service, we are not able to respond. The packages that they are getting are ones we could run under shared management and individual management, but the families are not able to individually manage them. They do not have the capacity. But there are not enough dollars for us to take that up and we cannot put them into our current system, because they do not meet the minimum requirements of our staffing allowances.

CHAIR: Are you talking about the fact that, under your award conditions or under your EBA, there are X amount of hours for an individual?

Mr Mauger : Yes, under the award conditions—the modern award standards. Our EBA aligns with the modern award, as I am sure many people's do. We have different systems that we put in place; we have ones that run under a WA condition, one where families are the employers, but then in those models the funding is not enough to sustain them to self-manage their plans or for us to become engaged. So, on the service delivery platform, there is a level of disconnect for us. We have long-term relationships and we have intermittent relationships with families, and they are coming to us. But we cannot extend that service, because it is just not financially viable. We talked yesterday about price, and the price is not enough for us to manage the overs and unders, like we have previously done with our funding: every service, every hour of a service, has got to deliver a return for us, because the—

Ms MACKLIN: When you raise both those issues with the NDIA, what is the response? For example, what is their response on the modern award point that you raised?

Mr Mauger : We are holding conversations with them. Again—and I will go back to the delegated authority—there is a pricing point. Now, we can raise that and we expect that Marita is raising that on our behalf. Again, we have very positive conversations, but Marita does not have the delegated responsibility to be able to say, 'Under "reasonable" or "necessary", this is where people actually are.' How that is determined is outside of our area; and I am not too sure whether or not Marita has the delegated ability to go above that.

CHAIR: What Dr Chalmers said this morning was that the flexibility around the actual payment, the fee, is greater under the Western Australian model than under the NDIA model, and that allows for some of these implications to be addressed.

Mr Mauger : Yes. Our experience at the moment, at this point, is that that is the case—that is, we have that sit-down relationship, there is a lot more going forwards and backwards and we are involved a lot more in that planning process, in the development and building of the packages. Our experience of people saying, 'I've got a package and I want you to deliver it' is very different. They are coming to us and we are saying, 'That's not a package that we would develop.' We are then engaging with the NDIA and starting that backwards and forwards thing. You are virtually having to reset people's expectations. When they say, 'I've done the plan, I've got the expectation and I want you to deliver', we are not able to do that.

Senator SIEWERT: So you are saying where you are able to engage with the development of the plan, the planners actually know what the limitations are of your ability to provide support with a certain amount of money?

Mr Mauger : That is right. We are saying within the packages that are there, it is really about the hours of service delivery, when people actually want the service. It is not an organisational capacity issue; it is about what is a sustainable package of support for our organisation to deliver under an industrial award that goes across Australia.

Senator SIEWERT: You have already basically had those discussions up-front during that planning process, so that the expectations are already dealt with during the planning process, rather than once the plan is done and you see it, and decisions have already been made about funding and you cannot meet that expectation—is that correct?

Mr Mauger : Yes, for new people. We have a significant footprint in this region. We are almost a $100 million organisation and 20 per cent of our services sit in this region. We are yet to have a large takeover of our accommodation supports happen at this point. We are having ongoing conversations with the NDIA about how we might go through that process. So, again, there has been really great engagement. But our concerns for the new families coming for whom we provide intermittent support. We have ADEs, so they gain employment but they are wishing to expand their supports. When these people are going through the process, we are not engaged in that. They are coming to us to provide that service and we are saying, 'We can't do this because the packages you are having are not sustainable and not practical for us to deliver.'

Senator SIEWERT: I thought you said that some of your existing clients are coming back with packages that you cannot sustain.

Mr Mauger : Yes, some of our existing. These are people who are in our long-term accommodation—more long term and formalised. These are the people who are getting ADEs, supported employment. People are accessing recreation, community support, intermittent respite—intermediate services where we help people at the upper end, at their most critical points. They are having the fuller packages delivered and they are coming to us saying that they want us to deliver the whole package. We are saying that that is not a package that we would have developed for you.

CHAIR: Let us look at a hypothetical. Basically, the WA model allows the providers to be an integral part of development of the plan. Therefore, it works and it is cost-effective. The NDIS model, nationally, is about more empowerment for the individual. Let us say the plan is done with yourselves and it works for you, but then I want to move who is servicing my plan to another provider. Isn't it quite feasible then that that plan will not work with someone else as effectively because of those nuances of your business model and doesn't that then restrict some of the principle of choice that has been built into the scheme in the first place?

Mr Mauger : No. We are not seeing this. When we are saying 'no' to plans, we saying under the modern award. We deliver a wide variety of packages in various ways. When we first see a package, we do not say: 'Here's a traditional model. We want to put you into that.' We explore it right across the gamut from self-managed, where they employ their own staff to manage that. For various reasons they do not tick those boxes. Under the minimum conditions of the modern award, if that was the minimum starting point the people have a greater flexibility because wherever they go that package will be successful because it meets the minimum hours of support and it meets the minimum wage conditions. So people are able to shop that package around with much more surety.

If we get down to where the package is so specific, then the people are basically golden-handcuffed to a service because it cannot be delivered anywhere else. What we want see is a more generic way that those packages are actually made up. What we are seeing is that, under the traditional model to where we are now, there really is not a threat. If people are funded at a dollar, we have seen over the last year that people are only spending 80c of that dollar. Even if you capacity-fund them at the front end, they are underspending, because the people are making good spending decisions with their dollar. As Justin pointed out around the transport, people, especially people with intellectual disabilities, are not accessing transport, but they need to go to their local shops or swimming pool or wherever it is 5, 10 kilometres away. We are seeing that absence, and we are having to pick that up through potential surpluses we are trying to generate elsewhere—and we are just not able to cover that gap either.

CHAIR: One of the concerns from the agency and the scheme developers from the start has been conflict of interest. We all talk around it a bit here. Give the committee peace of mind by telling us why using the model that you have had here for a long time does not run into those issues of conflict of interest. At other trial sites in every other state the issue of people potentially influencing decisions has been raised a lot. Why would that not be the case here?

Mr Mauger : If you have a look at the history of where we are sitting at the moment, a lot of people who come to our services and a lot of people who leave our services—we have a turnover and a churn, and there is that idea that people have the flexible funding to go wherever they wish—are exploring their packages in different ways. An example is where somebody with a $100,000 worth of funding, or $60,000 or $50,000, or whatever that is, choose to package that up to self-manage $20,000 of that. They will then seek to lock in $10,000 worth of respite with us, and then they will go to a community package somewhere else. This is already embedded into our system. As this goes on and people get to understand that they are more like consumers, they do have this choice and they are not wedded to organisations, they will make better and better consumer choices about where they will spend their money. When you are looking at our own service, we are reporting when we see people who are not spending their money effectively. We had an example where a person went out and set up their own respite site through a company and were paying themselves. We saw that, highlighted it and it was addressed. There is safeguarding in there. I suppose the concern, and the concern that I have with the committee, is that you set a service up or you set a system up that goes to catch out the one per cent rather than allowing the 99 per cent of people that do want the flexibility and do want the goodwill to be able to expend their money.

Again, what we are seeing is the people that are transitioning into the NDIA or into individualised services are underspending. They are not overspending; they are actually underspending. They are making good decisions about keeping money aside for when tragedy and so forth occurs. They are getting that greater flexibility. If I was building a system, I would build it for the 99 per cent of people that do want the flexibility and will make great choices. If we, as an agency, are not providing that flexibility, then we would expect that, as an oversight, the NDIA would step in, or, on the other side, we would say that our customers would leave us. They would see what their neighbour or the person next to them is getting, see those flexibilities, acknowledge that they want those flexibilities and then they would leave. I think this is the maturity in the system. You have to allow that, in any consumer-driven system, there are those agencies that will thrive. The question was asked yesterday: is there a space for rationalising the amount of services? Absolutely, but the customers will make that choice. They will go to those services that provide what they want and move away from those services that will not. But the market has to mature for that to occur.

CHAIR: Thank you. Mr Astbury?

Mr Astbury : The Western Australian Association for Mental Health represents around 80 community mental health organisations. The issue I wanted to highlight was the importance of community-funded organisations in the sector. The mental health sector is clearly one where there is not a strong history of investment in community support, so the continuity of Commonwealth funding into community mental health services is critical. Recently the Minister for Health made a welcome announcement about extending contracts for Department of Health funded services. That is good news. But we are in a situation where our providers are very uncertain about certain programs which have been identified to be rolled into the NDIS.

I think you have heard from a number of people who have spoken about the fact that mental health's involvement in the NDIS My Way process is very new and emerging, and there is a lot of uncertainty about issues of eligibility and so on. The continuity of those programs is critical. The fact that we do not know what the future of the Partners in Recovery program will be in the middle of next year is a looming deadline that is very important to the sector. That program is one that has been very effective so far and has filled an important gap.

The message I would like to leave you with is that our member organisations do not want to be in the situation at the beginning of 2016 that they were in just a couple of months ago when they did not know the future of their funding. They were looking at losing staff and losing the viability of their services. That issue is a critical one for us.

The other issue that is really important is housing. I think it is a particularly important issue in this trial site in the Perth Hills because there is a significant number of people with significant psychosocial disabilities where suitable accommodation is going to be critical to them living a good quality of life. For that to work, there needs to be sufficient supply of affordable housing. While there have been some signals about the NDIA being focused on that and the NDIS having some strategy around housing, how that emerges is going to be a very important part of the picture in terms of what is going to be possible for people in the future for them to live a good life. Thank you.

Senator SIEWERT: You made a comment about the programs that are being rolled into the NDIA and NDIS process. Can you talk us through that a little bit. You did not continue on there. I just want to flesh out what the problems are there and then make a connection with the ongoing funding for the community organisations.

Mr Astbury : As part of the bilateral negotiations, the Commonwealth indicated that a certain number of its funded community mental health programs—including FAMS, Partners in Recovery, family respite and so on—would be rolled into the NDIS. The impact of that would presumably be that only people who meet the full eligibility requirements for the NDIS would continue to receive those programs.

It is not clear that there will be a simple alignment of people in that way. So there is a significant number of people who are currently very reliant on those programs for whom eligibility for the NDIS is not clear. There are organisations that are providing those services now that are not sure whether their funding is going to be secure. There is a significant number of people who are receiving those services whose future eligibility for those services is not clear. That is an issue that has been addressed in the short term, but there is no long-term solution to that problem.

CHAIR: You have made your point well. It is fair to say that the department officials did not take this into account originally. It is now very much on their radar that rolling all of that funding into a system which is not going to cater for everyone whilst we still have the tier 2 issues to be resolved is not sustainable. The committee will certainly be making that point very clear both privately and also in our next report because we understand the absolute need for certainty in that area. I think it is worthwhile for everybody to know that the federal officials and, I am sure, their state counterparts now recognise that their original approach of turning all of that money into the NDIA is not sustainable. That is probably the best way of putting it. I am sure they are still looking at how to address it, mind you. At least you can be assured that it is on their radar.

Senator SIEWERT: I just want to know how you are engaging—and I know there is the bigger picture issue—through the process in a Western Australian context, both with the agency here and the My Way process.

Mr Astbury : I think we have established strong working relationships at a peak level both with the local NDIA program and the My Way program, so that is positive. The impact of these decisions will be felt on the ground but they will not be made by people in Perth or WA. They are issues that will have to be resolved nationally.

Ms MACKLIN: I want to reinforce the point you made about housing. It is an issue that the committee has raised at every single opportunity with the departments and—

CHAIR: Everybody.

Ms MACKLIN: As the Chair is saying, with absolutely everyone. We strongly agree with the point you are making. It must be resolved.

Ms Shapland : I am general manager with the Multiple Sclerosis Society of WA. I want to touch on the perceived conflict of interest around service providers being engaged in the planning process. We provide services across the health, disability and community interface because we work with people from the time of diagnosis through to end of life and everything in between. In WA with a long history of individualised funding and good working relationships with the Disability Services Commission we, along with a lot of other providers, will support individuals to apply for the individual funding packages through the Disability Services Commission funding round even though we are not funded to do that and even though we recognise that people may not choose us to be the service provider. We want to see them have the best opportunity to have the right supports. We take the same perspective with the NDIA, with the My Way down in the south-west as well.

It is not about us as the MS Society wanting to provide everything for everybody; it is about us recognising that our staff often have a long-term relationship through health and other services that we are providing with that individual. We know about issues such as cognitive impairment, their denial of their condition and the impact of that condition on their health and social relationships et cetera. We actually want to bring that expertise to the table to help inform that planning process to get the best outcome for the individual. That is not just us; I am sure that is many other providers who dabble across those interfaces with individuals.

CHAIR: Thank you. We appreciate you bringing that point up.

Senator SIEWERT: I think it is true to say that, as has been pointed out earlier, this is an issue that has come up around Australia. If it has gone too far the other way—and there are genuine issues there and people have raised the issue of conflict of interest with us—what suggestions would you make to get back to balance?

Ms Shapland : I think it is about recognising that not every provider actually wants to provide all the services for the individual but if there is a long-term relationship—and we have known many of our people for many years from a holistic perspective because we use a whole-of-life approach—we actually can help enhance that. I think it is about the trust and really you do a lot of service providers a disservice by believing they are out to get what they can. We are charitable organisations. We raise money and pour that back into delivering services to help meet unmet need and bridge the gaps, and there are many other service providers. That is one of the things that potentially can be lost in the process, by making it a very distant disconnected process of planning and working with individuals and families.

Ms HALL: Do you have any clients involved in the—

Ms Shapland : Yes. We work across the metro area and have been down in the south-west for a long time. We work across the sites.

Ms HALL: What differences are there between the two sites, from your perspective?

Ms Shapland : Relationships are probably easier down in the My Way site. It is a regional area as well.

Ms HALL: It is a smaller site and everybody knows everybody.

Ms Shapland : And it is regional. Our staff are working down in—and probably are living in the same town or whatever. As well, it is about recognising that we are willing to help not because we want to be loading people up with more services so they can buy from our store. It is not about that. It is a communication thing, and I think that has come out quite a bit. We deal with people who may not have adjusted to their diagnosis, and that could be from 20 years ago. They have enough trouble coping with day-to-day life.

We have people with dual diagnoses as well, but they have been socially disconnected. There is a whole raft of issues as to why people do not cope. Some people are being overwhelmed by the paperwork, by the onus being put back on them as the consumer to go through the plans and source people. They often do not feel that they have the capacity to do that. That is why we walk alongside people and help people to do that, to link in and fill out the paperwork. If we do not know that it is happening, we cannot be involved.

CHAIR: Sue, to clarify your other point, it is not the committee who believe the conflict-of-interest issues; I think you appreciate that. Western Australia's service model, where 90 per cent—as was the evidence earlier—is fee for service, is quite alien to most of the organisations throughout the rest of Australia. So there is a great deal of uncertainty, and with uncertainty comes fear as to where our money will be coming from—and 'Is the person sitting across from my aisle here going to be pinching my clients?—whereas you are in a totally different world, where that is the fear you do not necessarily have. That could be contributing to some of the concerns that we hear.

Ms Shapland : We have had portability within Western Australia for a long time. Like Activ, we have people who change their minds, do not like our model or want to go elsewhere for whatever reason, and we totally respect that and actually support and help facilitate that transition to other providers.

CHAIR: Thank you. Is there anything we have not heard or are there any new issues that anyone would like to raise? I am mindful of where we are at, time wise. If there are fresh things—now all the hands go up!

Ms MACKLIN: Maybe people who did not have a go yesterday.

CHAIR: If you did not speak yesterday, we would prefer in the first instance to give as many people a chance as possible.

Mrs Stone : I am the parent of a person with a disability—and his partner has a disability, but she is unsupported. The difficulty we have had is we have just been given NDIA approval but have no idea, really, what it is about. We have one hour that is with Rise per week, that we utilise. Other than that, prior to NDIA coming on board, we were with our local-area coordinator with the Midland area. Over the period of time, you do build up a relationship with that person and they assist you with housing, Centrelink and everything. I am a full-time worker so it is difficult to integrate that independent living with my own home now.

With the NDIA—I am not uneducated but it is certainly very difficult for me to coordinate for my son let alone see the other person in his life—these are people who are 34 and 36. Both have Asperger's and they are at different levels. To see her totally unsupported—I know she has got approval, but that is it. I cannot therefore go into NDIA and say, 'She lives with my son,' or anything like that. He cannot go to them and say, 'We need a combined package as well,' because she is at the level where she does not know really what it is all about—puts letters aside and that is it. I do not know that the NDIA even have a system for the partnerships of two people where it can be combined plus individualised.

CHAIR: We might ask the agency to talk to you directly, offline here, about that situation—because it is important in that we try and deal with individual things where possible—but also just address the more systemic issue. I guess the other point that you are making is that your, again, lived experience is that an LAC with a long-term understanding is better positioned to be able to make that system work. Without putting words in your mouth, are you saying that, under the LAC system, they would be able to bring that partnership that is existing and deal with that more easily, more holistically?

Mrs Stone : I believe so. The two-hour meeting that I had with NDIA and my son to work out a package, which I really do not understand, has been really of no benefit. He was approved in November. Rise have come to his home. They actually organised around a table, with the coordinator of Rise, the LAC, us and my son, so that we could sit down and we actually got a program for him in his own home. Unfortunately she did not really want to be a part of that, because she is not a person who can—she sits in a room all day. To give you an idea, she has no social skills whatsoever. So it is a difficult situation for us as well. We try and motivate her, but we would like to be able to say to NDIA, 'I need your assistance to talk her out of that situation,' whereas we cannot do that, because of privacy and everything else. So it is a very difficult situation. I understand the NDIA coming on board. I understand the local area coordinators. However, in Midland we had something like eight, I think, in a matter of about four years, if I remember rightly. We would get a connection, we would do our plan for our local area as well and then they would go off and they would transfer to Dunsborough or they went outside the program. As a person who is living that situation, and now with NDIA coming on board, you sort of sit back and think, 'Well.' You know. I actually just received an email yesterday saying that my coordinator here, who I had not heard from other than an email saying there was a social day somewhere, has left and gone back over east. So again the process is starting again.

CHAIR: We might leave it there. We will be breaking in about five minutes, and I would suggest that perhaps the agency have a talk to you directly on that issue, but we will ask the systemic issue to be taken up. Thank you for raising it with us.

Mr Burrows : Acknowledging this is a trial, we would like to also acknowledge the good work that has happened and the innovation that has occurred over the time. Hearing other comments, we would probably like to just note the improvements that have happened since 1 July. We do also note, as Shane from Activ raised, the level of delegation and some of the stresses that we have seen—maybe not pricing, Shane, but personnel, procurement and especially communication that the delegation is right at the local level for those functions.

There is a lot of work gone into preplanning, and it is not funded necessarily. We are one of those few that Dr Chalmers referred to earlier as block funded. So I do not want to waste time, and I preface this by saying we are happy to give evidence in writing afterwards. But the block funding does not cover the pre-planning work that we do and, because it is not yet covered by a plan, it is also not covered by the NDIA. There is a conflict of interest there, because we are working with families to best prepare them for this reform. We will continue to do that, whether or not they choose us as a provider.

The issue that I would like to raise, though, is the in-kind—raising it for the record as it has not been raised today yet. We had an allocation of in-kind. We work in the Hills and they designated for that. It is $600,000 per year. We do not have an issue with the concept of in-kind. The Commonwealth and the state need to work out who is financing what part of it. We do not have an issue with the quantum, with the amount, but we do have an issue in that the reform did not roll out on time from 1 July at full capacity. Splitting that into four quarters, that is $150,000 per quarter. We did not draw down any of that in the first quarter and we drew down about $15,000 to $20,000 in the second quarter and it is gradually ramping up—and that is fantastic. But what we did not spend in those first three quarters is going to be added to the end, and that is going to be a deficit effect for us. It is something that we need to get across in this trial process.

I will stop there, because we are time limited. But I would like to put on the record that in-kind is problematic, and I am happy to provide further written evidence.

CHAIR: Thank you. It is obviously one of those transitional issues but, as you just articulated very clearly, the financial implications and the cash flow implications adds another dimension. So, yes, we would be delighted to receive your additional information.

Ms Taylor : I am a traditional owner and I also work for Partners in Recovery as a capacity builder within the trial site area. I have lots of contact with Aboriginal families who have extreme concerns about the whole NDIS situation and whether it is actually going to take into context the idea of kinship systems when actually rolling out this type of program. Most of these families that I engage with on a regular basis have significant psychiatric disorders and the carers are usually the people who feel this concern. I am really concerned about where conversations and yarns are being held around what this means for Aboriginal communities not just here but also around the state.

CHAIR: Thanks, Cheryl. The first nations group were in deep conversations with the agency. We can get back to you if you are not able to stay this afternoon, but I think it would be helpful for you to have an update from the agency regarding those conversations and specific issues to deal with Aboriginal and Torres Strait Islander engagement, because it is very much different in different parts of the country. It is on the radar, but it would be nice to have an update for you as to what is occurring here in particular but also nationally. If you are happy for that, we will facilitate it.

Ms Fulton : I am representing Perth Home Care Services today but I also work for WAiS—which Ron Chalmers mentioned this morning—which is an organisation that supports lots of providers. There are two things that I think are worth mentioning which have not been talked about. One is around shared management. As a model, Western Australia has a lot to teach the rest of the country as well as internationally, as shared management is seen as a really innovative approach to supporting people and families. One of the things that I have learned since being in this country is that shared management is really fluid. So, although the NIDA has the option to self-manage and has this thing in the middle called planned manager, my experience tells me that it is really fluid. Sometimes people and families are absolutely able to manage and control all of the funding and manage all of their supports, but the nature of people and families is that their lives change. What I have seen an organisation like Perth Home Care Services do, as well as others, is step in at times when they are needed—right now it makes sense that we take over the management, or right now it makes sense that we let go. It is very fluid, and we are doing lots of work with the agency around what that could look like, because it is not really in the line items; it is not really embedded in the model.

The issue I want to raise is that there is lots of experience in this room and outside of this room with providers who can make that approach or that model work really, really well, and I think we need to really push it and plug it in the national scheme. That is the first point.

The second point, really briefly, relates to the conflict of interest. I cannot help but think, and our experience as a provider would say, if people have real choice then people will lead the way. If it is really open, who does it make sense for you to do some planning with? It might be the NDIA planner, but it might also be your agency, it might also be an independent community organisation like Valued Lives or it might be FAMS. People are able to make those decisions and, given that we are in a trial, I and Perth Home Care Services would love to see much more of that innovation being tested out. If this is about choice and control, how do you want to see that work for you specifically? I think the conflict of interest often is getting in the way of opening up real choice for people and families.

CHAIR: I think you have made two very excellent points. It was a good place to finish.

Ms MACKLIN: I agree: I think you make two very good points. Could we ask to NDIA to respond to both of them—shared management and innovation on planning assistance, if I can phrase it that way. They are both very useful.

CHAIR: Thank you to all the providers for your time and your insights today. It has been most useful. We will continue our dialogue. From here we go to the Northern Territory, which is the last of the trial sites for us to visit. Each experience that we have heard about has been unique to its region, reflecting some of the specific issues. From what you have reflected here today, the agency itself is on a journey, like we all are. It is important that we continue the dialogue so that that journey is a positive one. We are mindful of some of the decisions that the Commonwealth needs to take, particularly with those mental health issues—and we will be passing that back—and, of course, the decisions of the state government here about what direction it ultimately takes, but they are not for this committee. Thank you very much.

Proceedings suspended from 11:42 to 11:57

CHAIR: I now welcome witnesses from the Perth Hills NDIS trial site. Information on parliamentary privilege and the protection of witnesses and evidence has been provided to you. I remind those contributing that you cannot divulge confidential, personal or identifying information when you speak. If you wish to supplement your evidence with written information, please forward it to the secretariat after this hearing. You can just pop it in here; it does not have to be in any particular format. We are happy to take any notes or anything at all that you have.

I think most of you were here earlier. It is just an open format. The idea is to hear exactly what your experiences are, and hopefully that will help the development of the program and the successful implementation rollout. The floor is yours.

Sarah : I came from Liberia and am a citizen of Australia. As to the NDIS, thank you for what it did for me. They sent me a form for me, to look after me. I have had a stroke. Now I am supposed to be walking in the water, and also going to school. I do not have a car to take me to school. These things are worrying me and this is why I have come to you people: I do not know how they have funding going on; I do not know what is happening; I cannot get a clear understanding about the money. So I came to ask you people here today.

CHAIR: Thank you for that. So you are with the NDIS—you have met with them?

Sarah : Yes.

CHAIR: But at this stage—and if what I say is wrong, just tell me—it is not easy for you to understand what is going on and you want it to be clearer?

Sarah : Yes.

CHAIR: Before you leave today, we will make sure that someone from the agency makes that connection and we, the committee here, will keep in contact with you to make sure that, on those issues about understanding and transportation et cetera—whatever the outcomes may be—we get the feedback as well so that we can assist you to make that contact. So does someone from the agency want to make contact with this lady now, please, because I know she needs to go. Hopefully, this will be the start of a positive journey. But if we do not hear these things we cannot help you, so thank you very much for that and let us hope that this lady coming over to see you now starts the process. We will just leave you two with that for the time being and we will move to the young lady here in the front.

Ms Arbery : The NDIS is a good thing for people like me because of the flexibility of using whatever hours I need. I can have my own staff. I will have my own support. For recreation, before the NDIS I used to receive up to an hour a day of support. I could not have my own staff. With the national insurance scheme, there are many opportunities of service providers. It took me a long time to complete my plan because of wanting to change service providers and wanting to make sure that I had everything I needed in my plan. I would like the national insurance scheme to give more information about the planning process. I sometimes feel confused because it is different from the disability commission.

CHAIR: Thanks, Brooke. So are you happy with what you have got now?

Ms Arbery : Basically, this is a better way than with the Disability Services Commission, like I said. But it would be very confusing for a lot of the clients with disability out there. They might not understand what it is.

CHAIR: It is very important information, and what you are telling us is that a lot more can still be done to make the process easier for everyone to understand and to support them so that they get the most out of it—is that right?

Ms Arbery : I am a little bit deaf.

CHAIR: Oh—I am sorry.

Ms Arbery : I do not sign.

CHAIR: You can sign all you like; it's not going to help me!

Ms Arbery : What was your question?

CHAIR: I will just say it again. So, just to make sure that we understand: you are providing us with the advice that, from what you have experienced, you need the National Disability Insurance Agency to be a bit clearer, to make the information a bit simpler and to take a little more time and to have some more people support you in making sure that everyone who is a participant gets as much out of it as they can. Is that correct?

Is that correct?

Ms Arbery : Yes.

CHAIR: Thank you. Has anyone else got anything? That is very important because hearing from people like you who have been through the system gives us the best advice that we can possibly get. So thank you so much for taking the time and for waiting around this morning. We appreciate it.

Ms Pratts-Hincks : I am Carmen from People With disabilities WA. Since 1981, People With disabilities WA, known as PWdWA, has been the peak disability consumer organisation representing the rights, needs and equity of all Western Australians with physical, intellectual, psychiatric and sensory disability via individual and systemic advocacy. PWdWA has been providing individual advocacy to people with disabilities and their families who are participating in the trial site. We have supported people at meetings with planners to explore options, make informed decisions and ensure that their voice is heard and their concerns are raised. The feedback that we have received from people with disabilities and their families in regard to the NDIS is broad.

In our experience, people with disabilities and their families are benefitting from the NDIS in the following ways. People with disability have more choice and flexibility in the ways they receive their support services. For example, people can choose when they get their support and for how long, according to their needs. So, if someone needs two hours in the morning and three hours in the afternoon, that is not an issue anymore. Services are designed by participants, not by service providers. If hours of support are not used, they can accrue and use them when they need them. So, if someone wants to have a long outing next week, they can just save their hours and then use them when they need them. People with high complex needs who had limited or no supports feel that they now have finally been given a chance to live the life that they want to live and can be an active participant of their community. Brooke is one example. For example, people have been historically underfunded and were waiting years for funding. Now they have access to supports and therapy services that they need, according to their goals, aspirations and needs. The NDIS plan is driven by the person with disability, not by their service provider. The NDIS is empowering people with disabilities and their families by holding information sessions about topics related to the NDIS. People that have attended these sessions have a better understanding of the planning process and this gives them a chance to reflect on their needs.

There are some areas that we think that the NDIS has to keep improving, but I know that it is just a trial, so we will keep working together to make sure that that happens. People who are not registered need to be encouraged to have face-to-face meetings to understand the registration process. This first contact with the NDIS should meet the needs of potential participants. We know that people can go to the NDIS office and have assistance there and have their forms completed. We still do not know if someone that cannot go to the office will have someone come into their home or to their group home or hospital. That is something that we do not know. Our concern is that not everybody can use the internet to access the website or can read a big package because they do not have the literacy skills. So that process has to be easier for people and really respond to people's needs. People that were part of the state system need to be informed of the difference between the state system and the NDIS. We heard of people with disability in their families feeling confused through this transition process. For example, people need to know that they will no longer have the LAC, the local area coordinator. They need to have an understanding of the difference between the role of the LAC and the NDIS planner. They need to understand that state funding is going to stop—some people thought that they would have state funding plus the NDIS funding—and that they cannot share manage their funds and their mobility allowance will be stopped. They also need to understand what the NDIS is offering to cover what they are not getting anymore.

People need to have explained to them the meaning of NDIS terminology in their plan—for example, some people are struggling to understand terms such as 'fixed support' and, even when there is a definition of fixed support in their plan, it is not in plain English.

Having a separate account for transport could be confusing for some participants. It really works for other ones but we are wondering if people can be offered the choice of having a card such as SmartRider, so they do not have to open a separate account and be accountable for that card in their bank account.

Some people feel that they have been rushed to agree to plans. The planning process can take months and then the NDIS planners need to encourage people to take their time to develop their plan and include their support people—family or whoever they choose in their life—to be part of the process.

After the first meeting with their planner, people get plans that do not include all the support requested by the participant. If changes are made by the planner, people need to understand why and there is no rationale for those changes sometimes, so it is just having the time to explain: 'You have requested this but it cannot be done for whatever reason.'

Something that is being asked for is that some people will need to provide quotes. That could be difficult for some people to be able to provide one, two or three quotes so maybe that is something that the planner can help the person do.

People are given a hard copy of a list of registered service providers. Yes, we have choice now and that is fantastic, but a list does not really help. It could be overwhelming for that person. They do not know where to start, what questions to ask potential service providers and some people do not want their parents to be involved anymore because they are adults. So who is going to help them through that process of finding a new service provider and shop around?

We suggest that there should be a rating system that people can access and receiving services can rate their service provider and share that information with the general public—something like TripAdvisor for service providers. We believe that not everybody has the same networks around them, so we have to look after the ones who are isolated and have no supports in place. Thank you.

CHAIR: That was an excellent presentation. Thank you, and we are happy for you to also provide that in writing. Many of the suggestions that you have made are just common sense, which I am sure the agency will be encouraged to look at in detail. Many of those issues I know they are already working on, but you have put them very well and of course it is from the feedback from people who have the lived experience.

Ms MACKLIN: Get onto that TripAdvisor idea before someone else does.

CHAIR: You could make yourself a lot of money.

Senator SIEWERT: Do you have any specific points about the differences? In WA people are in a unique position to be able to tell us the difference between the My Way site and the NDIS hills site. Do you have any initial feedback on the differences?

Ms Pratts-Hincks : Not yet, because we are based in Nedlands and we are not in the area yet. We are looking forward to hearing what people are experiencing with My Way and, once we know, we will let you know.

Senator SIEWERT: You do not have members down there who are participating at the moment?

Ms Pratts-Hincks : Not yet. Soon, because they are getting closer to our office—Kwinana—

Senator SIEWERT: And Cockburn.

Ms Pratts-Hincks : so we are hoping that in the next few months we will be able to engage with participants in that area and we will be happy to provide feedback.

CHAIR: Thank you very much.

Ms Butt : My name is Megan Butt. I am a disability advocate at MIDLAS. My role at MIDLAS is to provide individual advocacy for people with disabilities, families and carers. Apart from the general disability advocacy I provide, I have been assisting people to navigate through the NDIS process. This includes assisting people with testing their eligibility, filling in the relevant forms, liaising with the agency and attending meetings with that participant. That is to make sure that they understand what is in their plan and how their plan is meant to be implemented.

I have assisted participants through the internal review process, when they do not agree with the decision or decisions that have been made by the agency. If a participant then does not feel that they have achieved an appropriate outcome from that internal review, they can then apply to the Administrative Appeals Tribunal to have an external merits review. MIDLAS is the selected advocacy organisation for WA to act as an independent advocate with the participant during that external merits review process. We have not yet had any external merits reviews, but I am going through several internal reviews at the moment with participants.

So firstly I want to touch on some of the positives that have come from participants. There have been some positive outcomes when the NDIA has worked in collaboration with the participant and their chosen advocate. This has allowed for more worthwhile discussions, ensuring that the participant's voice is heard and that the participant can then understand all the information that has been discussed. These collaborative discussions have worked well when key stakeholders have been present and included—people like advocates, social workers, support workers and anyone in their natural support network. For participants I have supported through the internal review process, meetings with the NDIA have also been quite positive.

It has been noted that the agency has been quite proactive in referring participants to MIDLAS who are going through internal reviews if they require further assistance. These meetings give the participant time to understand their plan and discuss additional supports that they feel are reasonable and necessary. In turn, this has helped to shift participants rather negative views of the scheme to a more positive one. However, it is noted that it is a shame that an internal review has been needed to be conducted to ensure a full understanding of a participant plan.

There have been some areas of concern which have been fed back from my clients and they have been touched on today: the shorter term nature of the relationship between planners and participants. Many participants are explaining to me that there are gaps within their services and supports after they have received an approved plan. This seems to be the case for a lot of transition participants, who have linked with local area coordinators. Obviously, local area coordinators had the capacity to provide longer term support for people with disabilities and many people have lost that support once they have transitioned. There have been quite a high number of clients who have sought assistance from MIDLAS after their plan has been implemented. These clients are often passed their three-month internal review date, which does reduce their scope for appealing decisions made by the agency.

Clients have reported they do not understand their plan or what was required of them to implement their plan—for example, linking with a support coordination organisation or an agency to complete a physiotherapy assessment. This has been the experience of several participants I have worked with. Often it is four to five months down the track before they come to us and they still have not accessed anything within their plan. There need to be safeguards in place from the agency to ensure that they are alerted when participants have not drawn-down on any items. This would be a further opportunity for the agency to check whether those participants are linked in with the appropriate services and then the participant also gets a further opportunity to feedback on their experience.

There needs to be transitional assistance offered by the agency to support participants until they are linked with organisations and supports required for their plans. If the agency could provide more assistance with getting participants initially linked with the necessary services, this would hopefully streamline the whole process and the participant could start using their funded supports immediately.

Another area of concern is to do with support coordination for people who have that on their plans. Similar to the LAC role, once someone has support coordination on their plan, their plans are approved and they are basically left to engage with that organisation. There have been quite a few new and existing disability organisations offering support coordination; but participants are often left waiting, as organisations have not been adequately able to keep up with the demand for the services that have now changed. This was the case for one of my clients who was initially linked with an organisation. We had several meetings with that organisation to discuss the plan and what things they could provide. Several months later—as we kept going back and forth—the participant was told they could not go with that organisation due to lack of staffing. This meant we had to start the whole process over again for that participant and source a new organisation for support coordination. So, possibly, plans should not be approved by the agency until the supports are ready to be put in place for the participant.

Carmen mentioned that the agency does provide a list of support agencies for participants. Again, this is only appropriate for someone who has the capacity to organise this independently. In several instances, clients have been left with no supports due to, unfortunately, support coordinators not doing their job. Participants who are not confident to self-advocate or able to link with an advocacy organisation could be at a disadvantage. People with more complex needs and people who do not have established support networks may require intensive support from the agency to assist when deciding which agency to go with and how to support them.

A lot of the feedback I am getting from clients is around the plans. A lot of participants are saying the plans are quite hard to understand and difficult to navigate. Often participants do not understand what their plans required of them in relation to specific line items. I think plans need to be in plain English or at least give a clearer idea for participants of how funded supports are broken down on a weekly basis. Often through the internal review process, participants have got this information and have reported that they now understand their plan. That is because we have had more intensive face-to-face meetings. But this should really happen during the planning process so as to reduce the need for internal reviews.

Lastly, talking about the transition of people from the old DSC system to the new system, clarification of the differences between the two systems needs to be provided and explanations needs to be given to participants when funding amounts and services differ. For example, one of my clients, who is a mother advocating on behalf of her son, received some intensive family support funding through DSC. This funding was extremely difficult for the family to obtain but it had a significant impact. Once their son had transitioned to NDIS, she was only allowed a small amount of gardening support but no other assistance that was similar to their IFS funding. The family had not been informed of the decision-making process that the agency had gone through to reach those decisions about what supports could be provided. The scheme, although focused on the individual person with the family, needs to recognise and value the contributions of family members and carers who are providing support for children with disabilities. Where appropriate, experienced planners need to be allocated to more complex cases to assist families who are in crisis. It is crucial that participants and their support networks be kept informed throughout the decision-making process so that they are aware of and understand the decisions that have been made. This would encourage open dialogue with the planners so they feel comfortable asking questions relating to their plan.

Ms MACKLIN: Thank you very much. It would be great if we could have a copy of your submission. I assume you have been back and forth with the agency on all of these issues. Can you tell us what that process was like, what improvements you have seen and how you think the process of leading to improvements as you identify them could be continuously improved?

Ms Butt : MIDLAS has a really good working relationship with the agency—I feel like half of my role is living there and helping people out. It has been quite an open dialogue of a bit of back and forth. Throughout my support of participants, when I have broached ideas they have been rolled out. For example, I have a participant who is vision impaired and was not getting information in an appropriate format for her to be able to read it. Changes were made so that she would be able to get it in a format that was accessible to her and I would be able to get it in a format that I could read as well. So there have definitely been some really great changes. I have been really impressed so far with the internal review process. It has been a way for participants to clarify a lot of information that they have not really understood. That has been really good. So I guess we will just keep on going with that back and forth because I have seen some really positive outcomes from that working relationship.

Senator REYNOLDS: Thank you for your very thoughtful and comprehensive submission. Does your organisation work with clients who have existing DSC or My Way packages?

Ms Butt : No. We service the Perth Hills area—the City of Swan, the Shire of Mundaring, the Shire of Kalamunda and the town of Bassendean. Unfortunately we do not have the scope to support the My Way side of things, which is a shame because I would love to get the comparison.

Ms Tapsell : My daughter has a significant intellectual disability. It is not easy to get up and go through this. Most of the time we try to compartmentalise these aspects of our life, so it is hard to stand up and explain it. My husband and I went through many years of no financial support, so one of the things we would like to see happen is good communication so that there is early pick-up and early funding is available. That might involve referrals from doctors, hospitals, schools, day-care centres and what have you.

Without funding, or without adequate funding, life is really difficult on a daily basis for the person with a disability, for their carers and for other people in the household. It is difficult and emotionally and it is really difficult financially. On many occasions, you really feel that life is hopeless. So good, adequate and certain funding is really important. We have been faced with significant costs and debts over my daughter's life. She is 23 at the moment. We were faced with giving up work to be able to provide the care that we need to provide to her. We were very fortunate in that, when we reached the point where we were going to have to give up work, we were able to access CAPS funding, an intensive funding package through the state health system. We only got that because somebody left the state. The funding is extremely limited. The funding, as part of that package, is really good, but the number of people who are able to get it is very limited; getting it depends on someone dying or someone else not getting it. Competing for funding is a horrible situation for families to be in.

We would say you need good early advice and a high level of certainty. You do need someone to talk to when crises happen and good responsiveness. We have certainly had that through local area coordinators in the past, through the state system. The last thing we would want is for the funding to be subject to the vagaries of state and federal commitment to ongoing funding; it is a really crummy situation to be in. Under the state system the local area coordinator was accessible except during changeover the period; it has been horrible. They have been cutting their funding, so they are moving or are not available. So we have had no-one in the state system to talk to and we have had no-one in the NDIS system to talk to. So we have been stuck in the middle during the transition phase because people just are not being replaced.

We did have a one-hour meeting with the NDIS. A plan was given to us at three o'clock on a Friday afternoon. I was asked to sign it and have it back on the following Monday, which was really unreasonable. We did not have the opportunity to talk to our service providers or anyone who could assist us. I just did not sign it, and then there was no-one available from NDIS for a month because someone was on leave anyway. Because we had the ongoing funding, that was okay, but I am sure there are a whole lot of people who would simply have signed up.

The new plan that was provided to us had significantly less funding. It was $38,000 less a year in funding. I am not silly, but I cannot figure out where the difference is and what services are not provided; alternatively, what services are provided but are funded to a lesser degree. It is incredibly hard to try and compare my state system with my proposed NDIS system, because they are talking about different things and they are worked out on different bases and the terminology is different. It is hard to actually identify where the difference is. I have a lot of trouble believing the same service would be able to be provided for $38,000 less a year. Common sense would tell you that. That adjustment has been difficult. There are still things in flux, like the transport costs. I heard some of the service providers mention that this morning. So we are being asked to develop our plan under the NDIS and sign up to that, but our service providers still are not clear about what they are being funded for or not. For example, at the moment my service provider charges us a flat rate of about $2.50 a day for transport. They are now changing under NDIS to pay for per kilometre transport, but I do not know what that is going to be, so I cannot include it in my plan. There are things like that during this transition period that are quite difficult.

Also, things like the coordination service that my service provider currently provides will not be able to be provided under NDIS, as I am advised. My NDIS contacted my service provider, but I was not aware that that was happening and I do not know what that conversation was about. I would really like to be involved in the conversation. There are things like public transport. It is really easy to say that participants should just use public transport rather than private transport. For my daughter, that would not work for her and it certainly would not work for anyone else on the public transport. There is the request for us to attend our one-hour planning meeting with NDIS with the participant. I can understand why they want to meet the participant, but it makes it really difficult to be able to concentrate and develop a well thought-out plan during a very limited amount of time, because you are also trying to deal with the person whom you are caring for. Under the state system, they would visit us at home, for example. Certainly, it is difficult under the planned NDIS plan where it is either all provided through the NDIS or all organised by the carer. There is no ability to have a little bit of both. That is what we have been told. Regarding flexibility, it is as simple as my daughter being incontinent, so at the moment we buy nappies for her because she is diminutive. Under the NDIS I am told that they can pay for incontinence pads, but it has to be a specialist provider, which means it is for the adult incontinence pads. They are bulky. There are things like that. It is something really simple, but it is about a bit of quality of life as well.

There is an incredible fear for the future. What happens if I get hit by a Mack truck next week? As we get older, I would like to know how that goes into the future. One of the things we had in the past was that my daughter received respite at a service provider. There was a sexual assault that we found out about on the radio—one of the few occasions that the shock jocks did something really worthwhile. Trying to find out information, either from Disability Services or from the service provider, was impossible. Disability Services provided the funding, but were not the service provider, so I was just bounced around between the two. It would be really nice if that is something picked up under the NDIS—accountability that sits with NDIS, where we have somebody to go to who is accountable for the service and provides the information that we need for reassurance. That is it for me.

CHAIR: First of all, thank you for being strong enough to come and share with us. Without you showing that strength, we have no option to hear these things. We do not have any other ways of doing it, and it is the only way we can help. I would like to clarify a couple of things. Whereabouts are you and your daughter now with the program? Do you have a plan in place that is now operational?

Ms Tapsell : I have a plan. I have a meeting with NDIS this afternoon to resolve my questions about why the difference.

CHAIR: I am sure a number of us will have questions. You kept using the phrase 'in your one-hour meeting'. Can you tell us about why you thought it was one hour?

Ms Tapsell : First of all, when the NDIS system was announced, I registered online and gave my number and everything else and registered my details so that I would be contactable, with address and many phone numbers and so on. Then a couple of months ago, I was thinking, 'I thought we were all supposed to have transitioned by now,' and I phoned up and they said, 'We phoned your home once during working hours and there was no answer.' I said, 'We work. You've got my details. But I have made contact now, so let's get on with it.' I was then invited to bring my daughter in and sit with the planner for an hour to hand over existing funding arrangements and any supporting documents I had and to talk through my daughter's needs. Two or three weeks later, I was emailed the draft plan.

CHAIR: I am sorry to keep on about this, but you keep talking about 'an hour'. Were you told beforehand that this was how long you would have?

Ms Tapsell : That was the appointment, yes.

Ms MACKLIN: I would like to pursue this issue a bit further. You and someone else—Carmen, I think—mentioned that the option to have a meeting at home was not offered. Certainly in other launch site or trial sites, home visits are available. Did you ask for a meeting at home?

Ms Tapsell : I was advised of the location and the time and advised that I should bring my daughter with me. I was not offered the option of having it at home and was not offered the option of having a service provider in attendance with me, for example.

Ms MACKLIN: By the sound of things, you would have liked another session to go through the detail, particularly as you indicated that your new plan has significantly less funding and you are still not sure why. That is what you are hoping to resolve today or tomorrow?

Ms Tapsell : That is right. If I had done as I was asked—which was, 'Here it is. Have it over the weekend, sign it and give it back to us on the Monday'—it would have been too late. It is only because I am difficult that I then started phoning around and said that I was not going to sign it until I was happy with it. Then we were advised, 'By the way, there are advocacy services that are out there that can help you,' and we ended up contacting Midlas and working through some of the issues that way. Conveniently, the NDIS planner then went on leave for a month and there was literally no-one else answering emails, phone calls or anything else. So there was nothing that could happen anyway.

Ms MACKLIN: We might follow up all of these matters with the NDIA in a moment.

CHAIR: I have to say that we find it rather remarkable and disturbing that you have had one meeting for one hour for a daughter who clearly has high needs and then be presented something.

Ms MACKLIN: A plan with significantly less funding.

Ms Tapsell : Yes, I agree.

CHAIR: We will take on notice all of your other points rather than labour them all now. Does anyone have anything particular they wish to drill into any further at this stage?

Ms MACKLIN: It would be useful if you are able to get back to us after your meeting, so that we can understand whether or not these matters have been resolved to your satisfaction.

Ms Tapsell : Thank you.

CHAIR: Would you be able to provide what you were reading from? Is that okay?

Ms Tapsell : You will not be able to read it. I will type it up and send it through the secretariat.

CHAIR: Are you sure? We have it on Hansard. Don't worry, but if there is something else that you want to add in any form we would be delighted to receive it.

Ms Tapsell : Thank you very much.

Ms Holyoak : My name is Bronia Holyoak. I am from a peer-to-peer support organisation called Valued Lives. I am here in terms of representing the people we are supporting, who are people supporting others going through a process. We are in a unique situation at Valued Lives because we operate a non-government organisation My Way contract. We are delivering My Way services through a contract arrangement that we tended for. We deliver peer-to-peer My Way support through that process, and it has been very successful.

I want to talk around what people have been talking about—this notion of relationship and how important that is and this role of local-area coordination and the connection and how that works, in terms of our peer-to-peer model. What we found was, when people came over to Valued Lives, they did not know who we were. As far as they were concerned they had been through a number of LACs and here was another one. They did not know much about who we were. To confuse things even further, we were a non-government organisation that was now delivering My Way/LAC type support.

What I am wanting to say is it took us time to establish the relationship. We were reluctant to sit down and work and develop plans. Our model is a peer-to-peer support model. Our My Way coordinator is a mum who has a daughter living independently in the community, with very high-support needs, and she does it quite well. We think peers can deliver this model really well, in terms of what that looks like, in terms of support on the ground for people, if they have the right support to be able to do that.

With the relationship stuff though, going back to that, we found that within a couple of months we started to develop the relationship. People did not know who our peer-to-peer-support My Way coordinator was at the beginning. Eighteen months now down the track they know us very well, and now people want to have the support. They are going to miss the support that is provided. Whether it is through Valued Lives, whether it is through local area coordination, it is the connection and relationship on the ground to be able to problem solve; that is what really is missing.

We are seeing people transition from our My Way coordinator over to the NDIS. I have to say our connection with NDIA is very positive. We need to acknowledge that Marita Walker and Kerry are doing their best in what I believe is a very difficult situation here in Western Australia. Everybody around would say the same thing, that Marita and the team there are open to having conversations with us, but they are just dealing with a lot of busyness, a lot of commitment to get things actioned in line with frameworks and probably the bilaterals. There is that pressing need to get things delivered, but for the peer-to-peer model that we operate we think it is successful.

We have taken that out, into the NDIA. We are not going to be a provider of support so that we can maintain our independence, in terms of a peer-to-peer role model, and a service-support coordination role here in the Midland area. What people are saying is they are going in, they would like some support coming out and they want to come back: 'Can we have that peer-to-peer support arrangement coming back through support coordination?'

As a model, to deliver that is very difficult because the number of support-coordination hours that need to be picked up to deliver one consistent face-to-face person is going to be very difficult. So we have a lot of inconsistencies coming in with the support coordination. We have some with reasonable amounts, we have others with none—that we would consider in our My Way role to have definitely required ongoing support—and then we have a mix and match in between. Trying to deliver the peer-to-peer support model for support coordination—and remain independent and not have the conflict of interest—is something that we really are interested in doing and are wondering how that might be facilitated within the new system.

CHAIR: Thank you. We appreciate your comments.

Ms Thompson : I do not like speaking out like this, but I need to do this. I have a son who is 16 years old. We had to go over to the NDIS a bit earlier because my son— his 11th school did not work out. We went there and we got told it was going to help us and it was going to be very positive, but it was just an absolute rigmarole from the start, and we still have not got a decent plan, about nine months later. I had to homeschool because at the last school he came home with a sprained arm and concussion because they quite restrained him because his behaviour is very severe. He could not go to school, so we went to the NDIS to try and get some funding during the day. We did have funding through the old system, which worked great, and he was doing really well for a couple of years under the old system. When we went over to NDIS, that all changed. They cut our funding dramatically as well. They did eventually, with this plan, give us hours, but it was only five a day, which I had before with the old system. That was with me having to try to work in the meantime. I have had nothing but put-downs and everything from my planners, and I have had a really hard time, and I have hated every minute of it and I wish it would go back to the old way. That is all I have to say.

CHAIR: We are very sorry to hear that, Natalie. Again, you know that the agency is sitting here in the room today, and I am sure they will be very disappointed also to hear that that has been your experience. I would hope that they would be able to talk to you today and see how we can improve that situation. When you have finally got your son's situation in a positive sense, we understand how much harder that is than to have things thrown up in the air. So let us see what we can get done today about restarting that process. Thank you again for being brave enough to stand here and share that with all of us. Would anyone else like to make a comment? We will finish that session at this point, and perhaps someone from the agency might like to go down and have a chat to Natalie. Thank you all for taking the time to be here and for sharing your experience with us. Thank you very much, everyone, for your participation.

Proceedings suspended from 12:48 to 13:29