Note: Where available, the PDF/Word icon below is provided to view the complete and fully formatted document
Community Affairs References Committee
Adequacy of existing residential care arrangements available for young people with severe physical, mental or intellectual disabilities in Australia

FARRELL, Ms Deborah, Senior Manager, NDIS Futures, Multiple Sclerosis Limited

WALKER, Ms Sandra, General Manager, Service Innovation, Multiple Sclerosis Limited


CHAIR: Welcome. I understand information on parliamentary privilege and the protection of witnesses and evidence has been provided to you. I invite you to make an opening statement and then we will ask you some questions.

Ms Walker : We thank the committee for the opportunity to appear today. It is timely that this Senate inquiry is taking place to consider what advances have occurred since the Senate's first inquiry in 2004-05 and how the commencement of the National Disability Insurance Scheme has contributed to the issue of the adequacy of existing residential care arrangements. For the record, MSL provides services across Victoria, the Australian Capital Territory and New South Wales. So we very much cover the eastern seaboard of Australia. The position of Multiple Sclerosis is that no young person should live in an aged-care institution unless it is the best solution for them, for their needs and for their circumstances. We think that is really important.

Today we would like to highlight specific recommendations in our submission that are imperative if in the future we are to prevent situations such as those of people we know intimately, such as Vicki. Vicki said: 'I have lived half my life in an aged-care facility. I want to live in the community with other young people and have a life. Living in a nursing home has meant I have lost all my friends. Even though I make friends with other elderly residents, they die. Being surrounded by death is upsetting and depressing.' Derek, who I know well, said:

You don’t LIVE in residential aged care, you just EXIST.

…   …   …

It was the loss of freedom, loss of respect, loss of intelligence. Pretty much you were treated like a person needing aged care, that you haven’t got a brain.

Mia, when telling us her story when we were preparing our papers for you, said:

I was in a ward that was full of dementia people and it was a reality that I was not prepared for.

…   …   …

The staff—they were almost robotic. They did their work but not with any feeling. Like they were milking cows.

Three young people—and that is part of their story.

We would like to highlight the following from our submission. We have heard Bronwyn and the people before talk about some of this, but we just wish to reaffirm it. We need to learn and value the evidence and the outcomes of programs and pilots that have already been completed in the past—specifically the COAG YPIRAC initiative that ran between 2006 and 2011 and our own continuous care pilot in partnership with Calvary Healthcare. In listening to the previous conversations it seems that so much work has been done, but so little has been taken from those pilots. Both provided strong evidence that the services can be joined up to work collaboratively across areas of health, disability and community services to offer a continuum of care.

At an individual project level this approach has been beneficial in addressing the needs of young people with disabilities and preventing entry to residential care. It has given clear evidence that this does work. Unfortunately, despite the strong evidence of sustained outcomes, the cross-sector coordination has not been adopted systemically. The example in Victoria of the continuous care pilot, which used a coordinated model, the MND collaborative care project, and the progressive neurological disease statewide project, currently implemented in Barwon, are other examples of this work.

The projects and pilots have worked across the existing service sectors and demonstrate that there are simple and affordable initiatives that can be taken to prevent more people being required to enter aged or other residential care facilities that are inappropriate to their age, their needs and their circumstances. To make the practice systemic, policy needs to be developed to ensure that all sectors work together to respond to the needs of this group of young people who are at risk of being consigned to a life of missed opportunity and who have no chance to live the ordinary life that we all take for granted. It does not take large amounts of funding to provide coordination to make this happen.

Our second part of our submission is to tell you about the need for the development of a new nationwide assessment and placement protocol for young people deemed to be at immediate risk of aged care placement. It is important. We can look at international best practice for examples. Canada offers the Alberta Assessment and Placement Instrument which enables health professionals to conduct a comprehensive, validated, consistent and rigorous evaluation of client care and accommodation needs. This enables the most appropriate rather than the most immediately convenient recommendation for accommodation placement. If you look here in Australia, we have no one tool. We have no one common language. As we have heard before, all of the sectors have their own set of assessment tools. There is no one common language. Frequently some incredibly specialised people are required to complete those tools.

Our third premise is that housing options are very limited. We have just heard a very long conversation about housing. The pressure to move young people from high cost beds in the health system often leads to placement decisions that do not offer choice and control, or enable the required time to make decisions. The creation of transitional or stepdown beds would allow time for a young person to be assessed, have plans developed about the most appropriate living arrangements and to determine what assistive technology they might need. It will also allow restorative care and time and adjustment for their functional capabilities and enable considered decision making by the young person and by their family. This is to enable them to choose wisely for their future, because these things will have a lifelong impact on their wellbeing.

We have three things we think are important to tell you about today. The first is that there have been lots of pilots that have actually got a lot of evidence that shows that there are systems and coordination that does work and that do not take a lot of money. The second is that there needs to be one common assessment tool across all of the sectors. The third is that housing options need to be much wider and much more varied and take into account the needs of young people and their families. We invite you to ask us any questions.

Senator BILYK: I noticed in your submission the recommendation:

Create short and long term respite episode funding for ‘restorative care’ and ‘adjustment’ and to relieve burden of care;

Are you able to expand on what you would like to see happen there.

Ms Farrell : I can talk to that a little bit. It comes into the discussion around the need for there to be transition from hospital. A lot of the time with this cohort of people and the progressive neurological group there is a significant burden of care within the home. One of the reasons why a lot of people end up in residential aged care is that they may enter hospital and the tension around getting people out of that space is that there aren't any transition beds like Health has for aged care: they have GEM beds; they have transition beds; and they have a lot of short-stay beds. What we would like to see is the ability for Health to create those same sorts of situations for people with disability or with emerging significant functional impairment that could mean they are at risk of requiring additional support or higher level support, but in the current systems there isn't that availability of those supports—the NDIS, of course, is helping to alleviate those issues. But in the broader environment at the moment there is the ration system. Many of these people cannot get timely supports to be able to return them to home.

If we have the availability of some step-down places, whether it be respite or transition, to give people time to adjust and return maybe, to function, to provide some education, to work out how that family can actually be supported so that we can strengthen all of that so they can then remain in their home with their family. I think that is really, really important that this be put back into the community rather than needing to think that we have to build more and more and more accommodation. There will always be a need for that, but how much do we need to continue to do it when we have seen over the years, in the last 10 years, a greater ability to keep people at home within home care? Let us extend that. Let us expand on that.

I guess I am a big supporter of the whole cross-sector coordination. I was one of the authors and initiators of the continuous care pilot concept and believe that we achieved good work through that pilot. We actually managed to keep 21 people out of residential care by making the systems work and utilising things like existing services of respite.

Senator BILYK: You mentioned step-down places. Do you see them as being completely separate from hospital—

Ms Farrell : They may be.

Senator BILYK: or within the hospital?

Ms Farrell : They could be within the hospital. Currently within some hospitals some people go to rehab. They do not necessarily always have a large schedule of rehab, but they are really just in a waiting place. It would be great to see purpose-built or availability of space within the health sector and within community to allow people to take that time out, to have that break and readjust, to have some restorative care and figure out what are the best pathways, what equipment is needed and maybe what resources are needed, and to actually explore what they have already and what just is not working, what resources are not being utilised to the maximum.

Senator BILYK: Some people would need completely different things from other people, so basically we are getting back to personalising, to treating people as individuals rather than as a collective illness or disease.

Ms Farrell : That is right.

Ms Walker : Very much so.

Ms Farrell : When we operated the continuous care pilot we had Health and various community sectors come together to talk about what are the options for this person, and they were included in that conversation as well. It was not about creating new things; it was about making the current systems and resources work, bringing them together and making them work. I think that is the key. It does not require lots and lots of new things, but it does require this mandate to make sure that sectors are working together.

Senator BILYK: With regard to the continuous care pilot, did the reporting of that have attached to it any economics such as how much money might have been saved by keeping people at home?

Ms Farrell : We did not manage to do as much of that as we would have liked to have done, but as was mentioned earlier by Dr Morkham and Alan Blackwood we did see that on average people received $20,000, which might have been around assisting them with respite and things like that and some in-home care. There is just not a huge amount of money—

Senator BILYK: It is a lot cheaper than a lifetime in a hospital.

Ms Farrell : Yes. One of the things we did was have quite a robust discussion with the Department of Human Services around the fact that many of these people were sitting on the disability support register waiting for a package of dollars. We said that awarding these people even $5,000 would alleviate the burden for their family. It would help that family stay involved and not relinquish. It can make such a huge difference to that individual to have one little bit of resourcing for them to remain together. As you say, it is much cheaper than moving them into even shared accommodation or residential care. The financial benefits of that, I guess, flow much more broadly than the individual; they flow into the family and their children, don't they.

Senator BILYK: Yes.

Senator SESELJA: Following on from that, over what period was the pilot conducted? When did it finish?

Ms Farrell : It was 18 months. It was originally funded for 12 months.

Senator SESELJA: Who funded the pilot?

Ms Farrell : It was funded under the my future my choice initiative—the Bracks government funding from the Victorian Department of Human Services

Senator SESELJA: When did it finish, roughly?

Ms Farrell : I think it finished in 2012. No, it was earlier than that—it was more like 2010.

Senator SESELJA: So it finished almost five years ago. Is it your evidence that we have not necessarily seen what happened in the pilot implemented in any broader way? Is that right?

Ms Farrell : Yes. We were the wranglers, as Dr Morkham and Alan talked about. We were in there negotiating and bringing these sectors together and making things happen. The only place where this evidence has actually been used is in the statewide progressive neurological project that Calvary has established with Barwon Health in Barwon. That has been operating since 2013. I can leave you with an overview of that paper if the Senate committee is happy with that.

Senator SESELJA: Sure.

Ms Farrell : This pilot was informative in the design of the Barwon project.

Senator SESELJA: If we look at the fact that it has not been more broadly implemented, from your dealings with the department, what do you see as the barriers? Why do you think it has not progressed as perhaps it might have after the pilot?

Ms Farrell : They have very different mandates. Health has a different mandate, different timing, different tensions, different funding. Disability has its own time frames; it has very rationed services. Aged care is the same. There is truly a lack of understanding about what the progression of a disease like MS looks like. A lot of people do not pick up on the early signs—the disease creep—when you can put in some early interventions to avoid crises and situations further downstream. I think that there are a whole host of things, but it has also been that everybody has always worked in silos, and community service sectors have worked in silos as well.

Senator SESELJA: In your opinion, how do we bridge that gap? How do we break down some of those barriers and those silos?

Ms Farrell : Cross-sector coordination is, I believe, the answer. That was what was central to the success, I believe, of this pilot. My personal experience in negotiating through situations for individual patients or clients is that you do have to have a fair bit of perseverance at the present time. But when you do get to bring people together—when you do get to bring the professionals, or the families, or the informal supports together—and you can create a single plan, or single streamline, of all that is going to happen, there are huge efficiencies. It delivers a very good outcome, and people feel good about that. I think that, if more could be done around that, people would start to cotton on that this is the way to go—that they would not have to have all of this angst during their day of lots and lots of people knocking on their doors and advocating and things like that—if we could actually mandate the bringing together. I do think that it needs to be co-funded. I do not think that cross-sector coordinators, or the coordination function, can actually sit in one jurisdiction. People need to be able to move across those jurisdictions freely to do what is required.

Senator SESELJA: I apologise if this was covered elsewhere or in the detail of your submission, but, Ms Walker, you talked about the common assessment tool as being important. Excuse my ignorance, but could you just explain to me how that would work?

Ms Walker : If you look across the sector there are many assessment tools, and I think if you are in aged care there is a different assessment tool and if you are in mental health there is another assessment tool. But they only ever deal with a part, so there is evidence that there are common assessment tools that can be used that take a much wider view of the person. They can be delivered by professionals but without requiring high expertise so that you have to wait three months before you can get your assessment done. They can go across the sector and have resonance across all the different parts of the sectors—health, age, disability, community—and give a comprehensive picture of what a person needs but clearly that the person and their family are helping drive that. Often assessments are done to people rather than actually listening and understanding the much wider context. So, there have been tools, but there is nothing in Australia here such that there is a common language. If I was to ring up someone in New South Wales they would have a different tool. There are no common tools.

Senator SESELJA: And you are talking across sectors and across jurisdictions as well?

Ms Walker : Yes.

Ms Farrell : And I think you can see that with the aged-care assessment tool—that they have particular things that they look at, and they do not necessarily translate well to somebody with a disability.

Senator MOORE: I have to admit that my head was reeling when I was reading all the documentation you provided to us, but what it did prove was that this project was evaluated within an inch of its life. It is all funded there. One of the biggest expenditures was the evaluation, and I do not mind that, but in terms of seeing how it goes, what has happened to the people now? That was not in all the papers. We had this group of people you worked with intensively, and their process, their families, were all in here. Where are they now?

Ms Farrell : Some have died as a consequence of their disease, as you would expect. There are a few who have passed away now.

Senator MOORE: This is something that is less than 10 years, yet the illness progressed to such a stage that that is a reality.

Ms Farrell : And there was a gentleman who died just a couple of months ago but his family had been providing a huge amount of support for him. He wanted to remain at home. He was actually very much on the brink of being entered into aged care. His wife had Huntington's, and she was in a nursing home, and he wanted to stay close to her in his own home. With lots of negotiation we managed to get the right supports in to assist him to stay at home. When he did die, at home, he had MS, and it was quite advanced. He was still going and visiting her, and it was very, very important for him not to move anywhere.

Senator MOORE: How old was he?

Ms Farrell : I think he was about 42 when we started working with him, when we brought him into the project. All of the people were actually under 50, as was required by that submission. There are still some people who are successfully living in the community with supports. It is always an ongoing struggle to keep them going with the rationing of the current disability system.

Senator MOORE: On notice, because naturally we are running out of time, can you give us an update on what has happened since the trial? The papers you have given us are extraordinarily detailed and come up with a number of clear findings in terms of what happened, one of which is getting rid of that stupid 50-year limit. I never understand 50, and I do not understand 65—and I am hoping to have lived experience! Nonetheless, the No. 1 thing in this evaluation and also your own paper was the role of the cross-sectional case manager—one person who was the point person so that everything else operated with that. I am really interested in one thing, and maybe this is one to take on notice as well: we did all this work, there was this detailed evaluation, the financial aspects you did cover—

Ms Farrell : Not as much as we hoped, though, as I said.

Senator MOORE: What happened?

Ms Farrell : As in why—

Senator MOORE: You were feeding these evaluations into every man and their dog—state government, local government, federal government—

Ms Farrell : We were. We actually presented this back to DHS, and Health were invited into this presentation.

Senator MOORE: Did they come?

Ms Farrell : Well, they came. Alan will recall. I think it was the worst day of my life, nearly, in terms of this sort of work. It was like a group of people who had been given sleeping pills. They were not engaged, they were not interested, and all they were concerned about was that they were not going to fund this. In actual fact, we did a follow-up. We wrote up all the case studies around where people were 12 months on from the completion of the pilot, and we did that on our own, without—

Senator MOORE: Unfunded.

Ms Farrell : Yes.

Senator MOORE: So, you got nothing back, from the time that you presented all this stuff until you actually provided it again, generously, to us. Other people have read it. All that work has just been shelved.

Ms Farrell : Yes. And those papers were included as part of the cross-sector coordination report that was done with New South Wales and the young people in nursing homes.

Senator MOORE: So you have actually provided interstate as well as federally. I just wanted to get all that on record. But from your professional position, both of you, you would consider that the evaluations and findings of this program are as real today as they were when you did the work several years ago?

Ms Farrell : Yes.

Ms Walker : Absolutely.

Senator MOORE: So, this is a living document.

Ms Farrell : Yes.

Ms Walker : Yes.

Ms Farrell : And we are trying to do as much as we can within our own organisation, but there does need to be the mandate, there does need to be policy around making organisations and the sectors work together.

Senator MOORE: So, if you could provide us with that extra information, then we will come back to you if there are further questions. Thank you very much.

CHAIR: Thank you. We have given you some homework. If you could provide that within a couple of weeks, that would be really appreciated. Thank you for your time and your evidence today, and your substantive submissions.