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Community Affairs References Committee
Adequacy of existing residential care arrangements available for young people with severe physical, mental or intellectual disabilities in Australia

CURTIS, Ms Annie, Area Manager (Southern Area Services), Disability and Community Services, Department of Health and Human Services

GANLEY, Ms Ingrid, Director, Disability and Community Services, Department of Health and Human Services

CHAIR: I would now like to welcome the representatives of the Tasmanian Department of Health and Human Services: thank you very much for coming. I remind senators that the Senate has resolved that an officer of a department of the Commonwealth or of a state shall not be asked to give opinions on matters of policy, and shall be given reasonable opportunity to refer questions asked of the officer to a superior officer or officers or the minister. This resolution prohibits only questions asking for opinions on matters of policies and does not preclude questions asking for explanations of policies or factual questions about when, where and how the policies were adopted. Officers of a department are also reminded that any claim that it would be contrary to the public interest to answer a question must be made by a minister and should be accompanied by a statement setting out the basis for the claim. I understand information on parliamentary privilege and the protection of witnesses and evidence has been given to you. We have your submission; thank you very much. I will note that not all of the departments always make a written submission, so we really appreciate it when agencies and departments do provide us with submissions. I would like to invite you to make an opening statement and then we will ask you some questions.

Ms Ganley : Thank you for the opportunity to present at this inquiry. I just want to make a brief opening statement, because I think most of the information from our department is contained in our submission. Really I just wanted to give a bit of a brief background on the specialist disability services program, which is what we are representing. Within Tasmania, we have a specialist disability services program that provides a range of services and supports to people living with disability. The majority of those supports are actually provided through contracts with the non-government sector. In Tasmania we have had numerous reforms over the last five to six years where we no longer deliver direct service provision within government; it is all provided through our community sector partners.

As part of the suite of services that we provide, we run an accommodation support program that provides a range of options for people across Tasmania. Within our accommodation support program, we have what we call large residential facilities, which accommodate people in groups of 20 or more. We have group homes, which is our predominant model of support at the moment. That is traditionally a four-bed group home, but we do have some other configurations and unit accommodation where people share between three and four individuals. We also have our individual support program, where people can gain access to in-home support and individual funding arrangements. That allows people to remain living in their own home, in private rental or in other types of individualised accommodation, and we provide the packages of support that they can purchase in their support as part of that.

We also as part of the specialist disability program, as discussed in our submission, administer the Young People in Residential Aged Care program within Tasmania, where we provide enhancement packages, diversion packages and supported accommodation in a purpose-built facility in the south. Through that program over the years, we have been able to successfully divert a number of people from entering into the residential aged-care system, and part of that is that we have established a really good working relationship with our colleagues in the acute hospital settings in our three regional hospitals. So we meet quite regularly with the hospitals to go through who has been admitted into the hospital system and is at risk of being discharged into inappropriate accommodation unless we can work out a support package for those individuals.

Obviously the other big reform that is occurring is the National Disability Insurance Scheme, and obviously it is part of your terms of reference. We are a trial site here in Tasmania, and our trial is people aged from 15 to 24. We are currently in the process of having those individuals enter into the scheme, with a view to rolling out the full scheme by June-July 2019.

That is probably the overview summary that I thought it would be worth providing, and then I am obviously happy to answer any questions.

CHAIR: Thank you. Who wants to go first? Senator Bilyk.

Senator BILYK: Gee, thanks!

CHAIR: I was not getting any response, so I made a decision.

Senator BILYK: Sorry, I am still getting my head around this morning's inquiry. Anyway, having moved on, I noticed in the Department of Health and Human Services submission that they acknowledged there were a number of areas which are systematically and operationally creating obstacles to a quality system and are likely contributing to poor outcomes for children in care. I am wondering if we have any comments in regard to what areas might be able to be improved on.

CHAIR: We are still doing young people.

Senator BILYK: Oh, sorry. Are we? Okay, start with Senator Siewert. No wonder I could not get my head around it.

CHAIR: Maybe I will start, because I have some questions that we can kick off with, and those are the issues that I raised with some of our community witnesses this morning. The overall number of younger people with disability in aged care is 150, but there are nine under the age of 50. I think that is so important, but I want to go to the cohort between 50 and 65, because that means there are at least 140 in that cohort in residential care. What is the approach you are taking to that particular group of people, who are still younger? They are still in the disability system at that age rather than going into aged care, and they require different supports from those of older people in aged care.

Ms Ganley : Firstly, because they are in the aged-care system, they do not receive any specialist disability supports because they are over 50. What we do for those who are currently in the aged-care system is, first of all, identify who they are. Quite often people will enter into aged care, especially over the age of 50, not having touched the specialist disability service system in the first instance—so we will not have been aware of their need.

CHAIR: Do we know how many of those currently in the system are in that group?

Ms Ganley : I do not have the number, but we would be able to find out.

CHAIR: I will reframe the question: do we actually know?

Ms Ganley : Yes, we would be able to identify how many of the 130-odd people were known to us, and how many were unknown to us, before entering into the aged-care system.

CHAIR: If you could take that on notice, that would be great.

Ms Ganley : Yes, we can do that. Once they are known to us, one of the services we offer is called a gateway service. That is our intake assessment and local area coordination service. It also manages the needs registers we keep for a range of our programs. People within the residential aged-care system are able to apply for our needs register to identify their need to move out of an aged-care facility. They can identify that they want to move out, but, while they are in an aged-care facility, we do not currently have the capacity to do much intervention. That said—and I am not sure whether some of the witnesses this morning mentioned this—because of our dispersed population, we do actually have some individuals who choose to go into aged-care facilities because they are in more rural and regional locations.

CHAIR: I want to come back to that group too.

Ms Ganley : They actually choose to go in there. In fact, among our under-50s there are quite a few where we have put packages into the aged-care facility because the individual has chosen to stay there for community and family reasons.

Senator POLLEY: Can we get a breakdown of where these 130 or 140 people are located? That would give us a better overview of their options. In many cases, I would suggest, there are no other options.

Ms Ganley : In their local community, no.

Senator POLLEY: In relation to those who are in an aged-care facility—whether it is by choice or whether there is no other option available to them—what training is available to, or is required of, the nursing home facility in providing care for those younger people? They obviously have different needs.

Ms Ganley : We do not get too involved in the recruitment and training of the staff in the aged-care facilities. That said, for those individuals we know of, particularly those under 50, we have gone in and worked with the local aged-care staff to train them on the particular needs of that individual and their particular disability. But we leave most of the training up to the aged-care provider and their registered training organisations.

Senator POLLEY: Do you have a requirement to oversee the training and the staffing levels at all?

Ms Ganley : Not from the specialist disability point of view.

Senator POLLEY: But would the Department of Health?

Ms Ganley : Not if they are fully Commonwealth funded.

Senator BILYK: We have heard from other witnesses about problems for young people in aged-care facilities in accessing allied health services—rehab, physios and that sort of thing. Are there any concerns like that? Obviously in Tassie, which is regional, I understand those issues are already there even for the general public—but what about in this sort of situation?

Ms Curtis : In the context of the Younger People in Residential Aged Care program—we target people who are under 50—we do fund enhancement packages for people and they can choose to access additional therapy or access the community. They go through a plan and organise what they want to do. But for 50- to 64-year-olds it would be the same as for everyone else attempting to access services.

Senator BILYK: Yes, it is problematic. How many people have you moved out of aged-care facilities?

Ms Curtis : We have the supported accommodation in the south. That is a four-bed house and there are four one-bedroom units.

Senator BILYK: Where is that?

Ms Curtis : In Chigwell, one of the suburbs of Hobart. Seven of the people supported in that environment have moved out of residential aged care. The eighth person is someone who was diverted from going into residential aged care. Then, we estimate we have diverted maybe five or six people a year from residential aged care.

Senator POLLEY: What options are available for young people in the north of the state?

Ms Curtis : It is similar across the whole state. People can apply for and access state-funded individual support packages to live in their own home. Everyone has the opportunity also to go onto a needs register for a supported accommodation place, to share accommodation in a group home or that sort of environment. We have supported people across the north and north-west to move out of residential aged care into their own private rented property that has had modifications and all that sort of jazz. They predominantly have been around and individual package of support.

Senator POLLEY: What about a place like St Michaels? What involvement if any does the department have in the oversight of that facility?

Ms Ganley : We have a funding agreement with St Michaels to provide a range of services—accommodation support, individual support packages and community access programs. Access to those programs is through our intake and assessment through the gateway. The individual comes through the gateway processes and the needs are assessed. Part of the placement within any of our supported accommodation arrangements is to look at compatibility and the right mix of clients, needs and supports. If St Michaels had any vacancies within their program they will definitely be on one of the provider lists that would be considered, if it was appropriate for someone on our accommodation wait list.

Senator POLLEY: Does the state department contribute to funding for the infrastructure? Are there any options for money to be put in by the state government to establish a group home or to build a designated facility, or do you rely totally on the federal government?

Ms Ganley : Through the Housing Tasmania department we get annual allocations from time to time to build and develop. Through some of the Commonwealth funding that comes in through the housing department they then have opportunities to build units and unit complexes, which a number of our organisations have had access to over the years. Danina St, Chigwell, for example, was a Housing Tasmania property that was built.

Senator BILYK: Can you tell us a bit more about how that works?

Ms Ganley : I will ask Ms Curtis to answer that.

Ms Curtis : It was established specifically as part of the original Younger People in Residential Aged Care Program. It was built originally as a four-bed house with two one-bedroom units collocated. Subsequently, the department built a further two one-bedroom units adjacent to it. So state government funds the support and the organisation goes in and provides 24/7 support. Part of the model when we established it was very much about making sure there was the capacity for the organisation to also access nursing support for people, if their needs required it. So it is not a 24/7 nursing model, but there is access to nursing if people want it or if the residents need it. It is their home and the organisation supports them to access the community. Obviously it is a reasonably new environment so it is a really nice environment for people to have family and friends come to visit. The feedback from the residents is that it is a very positive environment for them. It is certainly a very positive option, particularly having moved out of residential aged care.

Senator BILYK: Were the tenants, or clients, all in residential aged care?

Ms Curtis : Seven of the eight were.

Senator BILYK: Are they all from the south of the state, or from the northern suburbs, or are they from all over? Are they near family?

Ms Curtis : They are from all over. In the last 12 months there has been a lady from the north-west who moved out of residential aged care and into the supported accommodation, because it was a really good option for her. But that is problematic for her family, who are based up in the north-west.

Senator BILYK: Yes, that is what I was going to ask about.

Ms Curtis : So it is not ideal in that sense, but certainly it is available when there is an opportunity there, as a state-wide option.

Senator BILYK: But we have heard evidence from other people that being in an aged-care facility often institutionalises the person so that, if they are there for too long, they sort of lose ability to do even the menial things. Senator Polley was talking before about someone; all she wanted to do was make a cup of tea all day, but she was not allowed to do it. I am thinking about somewhere like the Chigwell house. Do people have to relearn skills? If they do, what sort of support do they get?

Ms Curtis : Because their support workers are there with them and available 24/7, and it is very much around—

Senator BILYK: Are there a couple of workers there all the time?

Ms Curtis : Yes. So it is very much around supporting people based on what their needs and wants are. If someone wants to make cups of tea all day then the support workers would support them to do that. It is their home, so there are no obstacles to them doing things.

Senator BILYK: And they can take their own furniture and things like that?

Ms Curtis : Yes, absolutely.

Senator POLLEY: I have one question in relation to the number of young people with disabilities that are in residential aged-care facilities. Has the department ever undertaken an audit to see how many people are there? You said you can access, but the fact is that there are a lot of people in the community who do not know what is available to give them support. So is it something that the department has ever undertaken in conjunction with the aged-care sector to do an audit of those younger people with disabilities living in care?

Ms Curtis : An audit in what sense?

Senator POLLEY: To know exactly the accurate number of how many young people are there. With these figures, was that undertaken through an audit? How were these figures derived?

Ms Ganley : Those figures are derived through the aged-care sector's information system—them entering the data into their system. When we started the YPIRAC program, there was an initial audit of the people aged 50 and under at that time so that we could identify exactly who was in residential aged care and ask whether they would consider moving out of aged care, because some people actually said no; they did not want to move out of aged care at that time. We have not done an audit as such since then, but I suppose what we can look into with the data request is that we would know some of those individuals, because they have made contact with the specialist disability system to identify that they want to move out.

CHAIR: That is how we know there are nine under 50. That is what I think your submission says.

Ms Ganley : Yes.

Ms Curtis : Yes.

CHAIR: So why would there be so much difficulty for the NDIS to track young people? We have heard that in the Hunter that there is big difficulty with tracking and finding out the number of young people in nursing homes; the NDIA is having trouble. You are obviously not having any trouble, because you are using aged care's data, which I would have thought is generated through all the processing that they have to do.

Ms Ganley : Yes.

CHAIR: So why—

Ms Ganley : The only reason could be scale; we are a much smaller jurisdiction. But we are just using the aged-care data, which captures people, and it is based on their birth date.

CHAIR: Do you have to manually go through and find the birth dates? I would have thought you would just sort for anybody in aged care born after a particular year.

Ms Ganley : Absolutely.

Senator POLLEY: What about that cohort between 50 and 65?

Ms Curtis : It is the same thing.

CHAIR: That is how you know there are 150.

Ms Ganley : That is why it is always at a set date too, because obviously people pass on.

CHAIR: Yes, of course. That is last year's data, so that is fairly new data.

Ms Ganley : Yes.

CHAIR: Sorry, Senator Polley.

Senator POLLEY: No, that is fine.

CHAIR: I just want to pursue the process in terms of the number of people on the wait list. You said that people can register for supported accommodation, and from what you said there is a wait list. How many are on that wait list?

Ms Ganley : At the moment there are 88 people state-wide.

CHAIR: So we have 88 people. There are nine still in aged care, so 88 are still at home.

Senator BILYK: Or in a hospital.

CHAIR: Or in hospital.

Ms Ganley : Or in alternative accommodation. Some people on our wait list are in inappropriate accommodation, so they are looking to move to something with more support. They are just doing—

CHAIR: Do we have a breakdown of—

Ms Ganley : We would have to take that on notice.

CHAIR: Again, could you take it on notice.

Ms Ganley : We can certainly break that down.

CHAIR: That is under 50?

Ms Ganley : No, that would be the whole age range.

CHAIR: Some of that group there, would they be—the 140, you have to take off the nine.

Ms Ganley : Yes. Some would be that group.

CHAIR: But there will be some that we do not know about?

Ms Ganley : Yes, that is right. Some are maybe living at home with family and have identified a need, and maybe we have got some brokerage funding in for short-term support, noting that we need to find a more ongoing solution.

CHAIR: So if you accounted for the 140 and the 88, there are around 200 people with a disability that we class as young—under 65—who are looking for some form of more appropriate accommodation?

Senator BILYK: Or do you take the 88 away from the 149?

CHAIR: No, because there is only some—

Ms Ganley : There would be some double up.

Senator BILYK: Hypothetically, if I were to walk out of here today and get run over by a bus and I ended up with an acquired brain injury, how would my family know how to get on your list and things?

Ms Ganley : Initially you would be admitted to the acute system. We have strong relationships with the acute system; we meet monthly with them and they provide a list of individuals who have been admitted, what their diagnosis is likely to be and the time frame. They start that liaison with the family and make sure the family understands what options are available to them and how to gain access to the specialist disability service system.

Senator BILYK: It is certainly better than other states. That is why I asked the question, because everything is so siloed in a lot of the other states that people just do not know what they can do, what they can access and what support they are entitled to.

CHAIR: So they would then have a conversation with the family about that? And Senator Bilyk's family would have a conversation with you about it.

Senator BILYK: They have got very strict instructions should it ever happen, let me tell you!

Ms Ganley : I think it is important to also note that our system is voluntary. Sometimes we provide all the available information but at times people still decide: 'No, we do actually want to go into an aged care home.'

CHAIR: Absolutely. We are not going to force them not to.

Ms Ganley : We can take you through an example, but again, because we are a small jurisdiction we can build that relationship. We have an ongoing record of who is in the acute setting and often they might gain access to our everyday supports; they do not need anything special. Sometimes we need to work on putting a specialised package—what we call a 'wraparound' service—around them because we might need to modify their existing home, find specific aids and adaptable equipment and then identify a support package for in-home support. We do that, yes.

Senator BILYK: Yesterday we also heard that in some other states if you do not access your rehab in the first couple of months you cannot get it 12 months later, and things like that. How does that work here?

Ms Curtis : It very much depends on the individual circumstance. Often people will be admitted to hospital and then go into a rehab bed within a hospital, and it is while they are in rehab that the linkages with the specialist disability service system happens. The other thing that may happen, depending on people's progress, is that they might be discharged with a support package and then come back in—not into the acute setting as such, but more into the community rehab stream—to make sure those linkages happen. It would all be part of a discharge plan.

Senator BILYK: One mum was saying to us yesterday that in the first two months her daughter just needed to sleep to help the recovery process. She was not ready for rehab then, but 12 months later when the daughter was ready for rehab they were told: 'Sorry, you missed your chance.' Would that happen here, or not? Is the system a bit more cohesive here?

Ms Curtis : I think it is a bit more cohesive, but then obviously there are probably individual circumstances that would say otherwise.

Ms Ganley : Again, a lot of our services have capacity issues, so it might be that yes, you would have ability to access that program but the timing might be delayed because of when you move from acute into rehab and then out into the community. The referral back into the community rehab might take a while to get picked up.

Senator POLLEY: Can I ask about the Jasmine Unit up at the Roy Fagan facility? Unfortunately a lot of young people develop dementia. Has that had an impact?

Ms Curtis : I can give you a real example. There is a lady who has gone into an acute setting following a traumatic event. She was in the Jasmine Unit and has been accessing and working with the specialist disability services system. She has chosen to—and has consented to—working with the specialist disability services system, so the state government was able to put a package of support around her. So she is on that pathway of being discharged to her home, which is very exciting for her. The majority of the beds in the Jasmine Unit, however, are for people who are accessing or linked into the mental health service system, so it does not necessarily interface with specialist disability services.

Senator POLLEY: You would not consider dementia as part of your area of expertise?

Ms Ganley : Not if it were solely dementia.

Senator POLLEY: They need to have some other physical disability?

Ms Ganley : Yes.

CHAIR: In your submission, you talk about the increasing complexity of levels of disability for people under the age of 65. Can you explain what that means and do you know why you are getting that increase in complexity?

Ms Ganley : In our submission we are referring to people who are surviving accident and injury.

CHAIR: That is the cohort you are seeing. You are talking about ABIs?

Ms Ganley : Yes, particularly non-compensable accident and injury. They need quite a high level of support.

CHAIR: I just wanted to clarify that. You also talk about end of life. This committee has done quite a bit of work on end of life and palliative care. You make a comment that it is hard to manage because there is insufficient health professional support. Can I take that to mean—because you also refer to residential aged care—that providing end-of-life care and palliative care outside the residential aged-care system is proving difficult?

Ms Ganley : It can be difficult at times. People do sometimes access the palliative care team and they come into the supported accommodation environment. Again, it is very much case by case. What we are highlighting in our submission is that there is a lot of work that happens at the level of individuals, but we do not really have a systemic response where 'if this is the way it goes, this automatically happens'. It is more a negotiated and individualised response.

CHAIR: From what you just said, is it fair to say you need a more systemic approach? I am not trying to be rude here, but would it be better to patch together something rather than dealing with this on a case-by-case basis? It means someone doing that.

Senator POLLEY: The previous federal government put a lot of money into palliative care in Tasmania to run various pilot programs. Do you have any knowledge of that—whether it is working or not working? Your evidence is suggesting that perhaps it is not, that there are gaps.

Ms Ganley : I would have to take that on notice and talk to my health colleagues. But part of the issue is whether there are enough health professionals available in the field.

Senator POLLEY: There is an internal argument that goes on between the north and the south. It is unusual to have that! There are 10 palliative care beds in Hobart and there is one for young people in Launceston—and there are three others that operate out of a private hospital. There is a north-south rivalry with respect to access. There are some people who, through circumstances, need to be palliated in a facility. Most people would like to be able to do that at home, but that cannot always be done. It would be interesting if you could take on notice what the department's view is about how that funding has been directed and where the gaps still are. I think that is a growing area of interest to our community.

Ms Ganley : We will do that.

CHAIR: We were talking about this before—and you also made the point—that there is a shortage of alternative accommodation. That goes back to the waiting lists. Can I put two and two together and hopefully add up to four rather than five—that is, part of the waiting list is due to lack of appropriate alternative accommodation?

Ms Ganley : Yes.

CHAIR: Because that is consistent with the evidence that we received this morning from providers.

Ms Ganley : Yes.

CHAIR: So what is the Tasmanian state government doing about addressing that? We have heard some of the proposals that the providers have. I will add the other question I have on there; if you cannot answer, take it on notice. We heard yesterday, and we have heard from some of the providers this morning, that they think that housing should not be disability's responsibility; housing should be housing's responsibility, and disability providers should get out of housing and just provide the services, and housing should provide the housing.

Ms Ganley : Here in Tassie, the majority of our housing is actually provided by Housing Tasmania. Some organisations have invested their own capital or had historical arrangements, so they own their own buildings, but quite a majority is. We work really closely with our Housing Tasmania colleagues, if there are available funds, to look at what new builds can occur. Certainly, through their Commonwealth agreements, we have had a range of different options put on the ground or Commonwealth funding that is coming through the disability program. Housing have worked with us to do what we call units in the backyard and various other alternative accommodation options. So we do work within what is available. I suppose what is prevalent is that the demand is just outstripping the supply. Here in Tasmania, they are actually working on an affordable housing strategy. I would be happy to provide some information from Housing on that.

CHAIR: That would be really useful if you could.

Senator POLLEY: Could I just ask a quick question. When Housing Tasmania are involved, is the housing that may be there, or purpose-built places, designated by the traditional housing department areas?

Ms Ganley : No.

Senator POLLEY: There can be an infill—

Ms Ganley : It is quite widespread. We look for amenity in terms of access to local services—a flat where we can, as much as we can in Tasmania.

Senator BILYK: Challenging.

Ms Ganley : So we have quite a spread portfolio, which is good, and a mixture of purpose-builds.

Senator POLLEY: That is good.

Ms Ganley : We have learnt. We have bought some houses and modified them, which can be problematic.

Senator BILYK: Yes, there are a couple where I live, in Kingston.

Senator POLLEY: It can be more expensive too.

Ms Ganley : It can be, yes. So we have diversity, and we are certainly finding that both individuals and families are more interested in unit style accommodation than in the traditional four-bed model as well. So we are looking at ways to expand that model.

CHAIR: I flagged that I want to go back to regional issues, and we have touched on them a bit, but, of that list of 88—it was 88, wasn't it?

Ms Ganley : Yes.

CHAIR: Would you be able to break it down to what is regional? You say in your submission that there are issues around regional support, so could you break it down to regional.

Senator POLLEY: But even further than that, because when you talk about the north-west it could be Queenstown, Wynyard or Burnie. So, if you could actually drill down a little bit to towns, it would be great.

CHAIR: We were asking this morning about that, and some of the witnesses were saying they are trying to co-locate because of the relatively low numbers. It is not possible to do separate accommodation approaches but co-locate. Now there are issues there as well. How much work has gone into looking at how you can explore some of the options for regions?

Ms Ganley : In terms of?

CHAIR: In terms of accommodation—alternative accommodation so people can come out of residential aged care.

Ms Ganley : Certainly our view at the moment is that another Danina Street—a purpose-built with a medical option for extra nursing support—would be ideal, located in the north-west. But we would need to work on how the capital comes for that. In the north-west we have properties probably all the way from Devonport right through to Burnie and Smithton, and we would obviously need to work where the best option was.

Senator POLLEY: Have you ever investigated the option of having co-location with an aged-care facility but a separate residential area for younger people—you still staff it with appropriately trained staff—because of the availability of land and the convenience of having doctors and other support? Has there been any discussion with any of the aged-care sector in relation to that?

Ms Curtis : I think there was early on in the YPIRAC program—when we were looking at the options and before the Chigwell accommodation was established. I think some of that included discussion of how some of the residential aged-care facilities already had a small cluster of younger people they were supporting.

Senator POLLEY: Can you take it on notice to see if you can provide any further information to the committee on that?

Ms Curtis : Yes.

CHAIR: Thank you very much. We did give you a fair bit of homework.

Ms Ganley : Yes!

CHAIR: Sorry about that. Thank you very much for your time. We really value it and appreciate it.

Committee adjourned at 14:16