TRANSCRIPT
FAMILYANDCOMMUNITYDEVELOPMENTCOMMITTEE
InquiryintosocialinclusionandVictorianswithadisability
Melbourne— 17March 2014
Members
MrsA. Coote / MrD. O’BrienMsB. Halfpenny / MsD. Ryall
MrJ. Madden
Chair: MsD. Ryall
Deputy Chair: MsB. Halfpenny
Staff
Executive Officer: DrJ. BushResearch Officer: MsV. Finn
Administrative Officer: Ms N. Tyler
Witnesses
MsM. Baron, general manager, community solutions, people and quality,
DrA. Sinclair, team leader, psychology and counselling services, and
MsR. Stewart, strategy and service design, Independence Australia.
TheDEPUTYCHAIR— As outlined in the guide provided to you by the secretariat, all evidence is taken under the provisions of the Parliament Committees Act 2003 and other relevant legislation and attracts parliamentary privilege. Anything you say outside this hearing does not attract parliamentary privilege. We are recording the proceedings, and we will send you a copy of the transcript when it is available. We ask that you present for about 15minutes, and for the remainder of the time we will ask questions. If we run out of time, we have been asking others whether we can write to you and get a response if we have further questions. Please go ahead.
MsBARON— My name is Marcia Baron. I am the General Manager, Community Solutions and Quality at Independence Australia. I look after the community services arm as well as the quality area and the training business. DrAndrew Sinclair is the Team Leader working in our psychology service, and Raelea Stewart is our expert on strategy and service redesign.Independence Australia has a history of 57years. It originally grew out of the Austin Hospital, and part of that history was in and around people with acquired disabilities and what in essence was the work that enabled people to go home post hospital care and live within the community. As part of that history, Independence Australia has continued to do that work, but over the last 57years it has probably broadened the work it has done in terms of disability and has been working with a broad range of clients who have a range of different disabilities, whilst maintaining a bit of a specialist focus on acquired or physical disabilities. That is our expertise.
The organisation operates a range of different services. Most of our services are in home or in community, and we will talk a little about that later. It operates as a social enterprise, so it has a commercial part of the business. We also have a training arm and a group training arm, which underpins what is in fact our core mission, which is really around working with clients in home.
In relation to the services we provide, the fundamental premise around our services is that in essence we work with people in their communities. I will give an example of that. There is a statement in the sector that is currently gaining a bit of traction, and in essence what we hear now is that people with disabilities are ordinary people who want to lead ordinary lives. If I think about the work our organisation does, it is around working with those individuals and getting a real sense of what that life is and then being able to shape what in fact it is that we can offer so that they can get back to that life as closely as possible.
In preparing for today and thinking about social inclusion, the focus we have is that some of the work we are doing is around underpinning what the family does. We work with a range of different people, and in our experience in the breadth of different cultures, families and family structures we work with there are a range of different things that happen, so the reality about social inclusion and how possible it is for people to reengage with community comes down to what is normal in that family, what the cultural issues are in that family, what the family norms are and what the engagement was with that community before the disability was acquired.
I will give some examples. We work with people who have never left their bedroom because in that family that is not possible, so some of the work we do in providing care in that home is around engaging with that person in a more palatable way, but we are unable to get any traction on shifting that arrangement. We also work with people who get on with their lives, go to work every day and engage in a number of different ways, but fundamentally our view is that, whatever is happening in that family, wherever we can actually make a difference we need to be working with that family and shaping our offering and how we support that family in order to make that happen.
As people who do not have a disability, when we think about the community there are things we take for granted. The thing we mostly do not even think about is the spontaneity we have around the way we run our lives. It is normal for a person to catch up with friends, go on a picnic, go to a film, join a club and get a job— all those things. If you are a person with a disability or if you acquire a disability, there is an added dimension to that because, whatever the activity is, there is an element of planning that is far greater than anything we can conceive of, so there is no spontaneity. There is a sense of needing to prepare well in advance in order for that to happen. If you have good family networks and a good structure and supportive arrangement at home, some of that happens with your family and at home. If you have a very small family and your networks are much smaller than that, it does not happen as easily, and you need a lot more support from a service provider like ours. Planning is one of the key things that I would suggest influence how involved and how engaged in the community a person is.
Regarding some of the ways the organisation has responded to that, some of the work we have done is that we have started to think about the services we are offering and how they are designed to respond to these things. The organisation and our service offerings have been in and around trying to address issues as they arise from the families we work with or the people we work with. An example of that is our Strengthening Families program. I know that many moons ago there was a funded arrangement that was called that, but we have borrowed the title. When we sent our support workers to work with a client, a number of carers and families were saying to us, ‘Hey, that’s really great. We got a bit of training on how to do bowel care and how to do a PEG feed, but once we left the hospital and came home we had forgotten. We’re not confident. We would like to do that training’. We started to think about how to address this and how to actually train up family members to feel a bit more confident with the nature of the work and support they need to provide to their loved ones, and that is where the Strengthening Families program grew from.
Of course like many things it is not a funded service. We got some trust money and some donations and set that up, and we are now running it as a pilot. We have been working with people out of our peer support group network and also with Carers Victoria in trying to set up the content and message what it is that we are offering people. That is something the organisation is doing around addressing the impediments as they are being raised by the people we are working with. There are a range of other programs we are offering. I have a whole lot of detail around the different programs, which I will skip because you can have a look at it. There are a range of other programs we are looking at.
I suppose I just wanted to also talk a little bit about some of the work we do with younger clients who have acquired disabilities through a range of different things— and some of it, more often than not, which is in the media, is risky behaviour. In some of that work and how we have been going about it, the bulk of our service has been around providing what in essence is disability support work in home. The nature of the work that our support workers do is mainly dealing with physical needs, the technical stuff, when a person may need the whole personal care suite. They might need assistance to get out of bed, they might need assistance to cook a meal. They may need assistance to actually do far more complex things, like bowel care, PEG feeding, suctioning and a whole lot of other bits and pieces which are fundamental to their wellbeing.
When you acquire a disability and you are in that transitional stage— you have left the hospital but you are in the Talbot, doing your rehab and getting ready to move home— some of the things that we are hearing from our clients as they get home is that in essence they go through that process that they have acquired a disability, but they have also acquired a whole range of other things, which includes grief, and of course there is that loss of what was once their life. There are all of those things, and for us, what we see is also a loss of confidence. Some of the work that we do is we have a psych service, and that deals with the individual stuff. It also deals with the family stuff. In terms of what I think can be offered in a far more powerful way is our ability as a service to be able to work immediately with those peer groups.
TheDEPUTYCHAIR— Maybe we could ask you some questions.
MsBARON— Yes, sure.
TheDEPUTYCHAIR— We are looking at what government can do to fund, define and measure in some way social inclusion of those with a disability and also what sort of things we can provide in terms of recommendations or policy. It is good that you have given us this, and we did get some background from the secretary; they are good at doing all the research. So maybe a bit more in terms of what you see, even perhaps picking out a particular group— say, those who have acquired an injury later. Are there certain things that are either lacking within the current system or perhaps——
MsBARON— What I think is lacking in the current system is that ability to be nimble. There are two examples that stick in my mind. We work with a man who has acquired a disability and who ran his own farm. He now has high service needs. He has 24hour care in his farm, in his home. We have tried to build around him, through our service model, support for his physical needs. But in essence this man just wants to get on to manage his farm. He would like to get back to manage that farm. We have exhausted our ability in terms of providing him with a workforce for his physical needs. What we have not been able to do is to flip that around. The service model that we have at the moment looks at, ‘Well, here is the level of service that providers offer. We can offer you this suite of things’. In essence this man really needs farmhands who can also kind of do the extra things he now physically needs. But we have not been able to do that yet. There is a whole lot of other modelling and work we need to do in order to make that happen for him.
TheDEPUTYCHAIR— Rather than supporting the person’s physical needs, you are talking about support in order for that person to continue to work or earn an income?
MsBARON— Absolutely, because that was his life— he ran his farm. We can put in some of the technology and equipment he needs, but the reality is that most people need a companion, a justintime companion, to be there should they need something, but most of the time they may not need something.
MrMADDEN— In that transition.
MsBARON— Yes.
MrMADDEN— It is a transition period, I assume——
MsBARON— And even before——
MrMADDEN— Which may never be complete, but it is still a transition.
MsBARON— Yes, that is right. In the current industrial environment people either work in disability. There are a whole lot of professional and technical skills that disability workers have, but there is also this other need for a just in case. We do not have a response for that in the sector. It may be happening in a deregulated way; it may be happening because you go to your neighbour or you ask your family——
MrMADDEN— Or a good friend volunteers for some of it.
MsBARON— Yes.
MrO’BRIEN— Just on the farm, there are a lot of farmers who do not have a disability but who are in the exact same problem with an ageing environment; there is no return through the farm gate, and they have noone to take over the farm. There are big issues. Obviously your individual farmer has very specific needs; I am not discounting them——
MsBARON— Yes, sure.
MrO’BRIEN— But how do we step up? Part of it is to actually look at the problems in the farm sector in general in terms of rural labour and companionship and isolation, which are very common. Everything you have said could apply to a lot of people. I know this person has very specific needs. Therefore when we look at a problem sometimes there is a broader solution of greater social cohesion and accessibility, but specific tailoring needs to be added to that. Can you just think about that example.
MsBARON— The challenge is how do you deal with what in essence are the individual requirements on a casebycase basis but provide a structure to enable us to be able to almost customise.
MrO’BRIEN— Yes.
MrsCOOTE— Can you talk more about formalising? When someone has acquired a disability or disease, they have a friend network that is outside— perhaps it is people from the footy club or some other organisation— that people who are born with a disability do not have to the same extent. Are you talking about formalising that group of people to know how they can help the person with a disability? Many of these young people have never come across a disability in their lives, so they do not know how to deal with their friend who was running around on the footy field last week and is now in intensive care. They do not know how to deal with this, particularly as they come out of intensive care. Are you talking about formalising those people? That is something that perhaps the government could do— have some programs that help to harness those groups. A lot of them disappear; they lose their friendship groups. Are you talking about having a formalised method— government support or a program— that in fact keeps that friendship network there and keeps them engaged so that the person has the same friendship network they had prior to attaining the disease or the acquired brain injury or disability?
MsBARON— That is right; that is what I am talking about.
MrMADDEN— But I suppose even then it is a fluid structure, is it not? You cannot necessarily say you have care for 24hours a day or 12hours a day.
MrsCOOTE— This is more about the friendship group; this is over and above——
TheDEPUTYCHAIR— This is about inclusion.
MrsCOOTE— This is not learning how to do the PEG. It is more about having to actually keep the friendship going, like talking about your music or the friends you knew or the trip you have had or ‘Can you come on a trip?’.
MrMADDEN— Some facilitator; is that what you are talking about?
MrsCOOTE— Not really.
DrSINCLAIR— It is interesting how our psych service ended up at IA. It is unique in Victoria. Psychology funded through Medicare is a very clinical approach; you have to be diagnosed with depression or anxiety to get treatment. But if you acquire a spinal cord injury and your whole life changes— you might be interested in the fact that Robert Rose had a spinal cord injury. At 22 he was playing for Footscray. His dad, Bob Rose, was a famous coach and player for Collingwood. I think he was also playing state cricket. Then he acquired a highlevel spinal cord injury— quadriplegia— and was required to move home, and Bob Rose cared for him; he became his primary carer.When Robert Rose died, the Rose family came to IA and said, ‘We’d like to start a foundation and raise some money in his name’, which they did. They said, ‘The first thing we want to put that money towards is a family counsellor’. We had enormous resources. The Collingwood Football Club and the whole football community came around and supported us through that transition, and we still struggled. It was really difficult; the role changes and everything else that was involved with that.
They wanted to help fund a family counsellor to work with families after they have had a catastrophic injury to help them with all the role changes, not just the grief and loss. We now know in positive psychology the ingredients in wellbeing. Social inclusion includes having a purpose, having meaning, having the opportunity to engage in activities where you have a sense of achievement and accomplishment and the opportunity to have positive relationships. We know that these are the main ingredients involved in wellbeing and happiness. When suddenly you are young man who cannot walk any more, there are a huge amount of changes: the idea of family, relationships, if you were injured and your previous job was as a plumber or something and you cannot go back into it. It does not necessarily fit into the model that you have depression and you get 8 to 10sessions of Medicare.