ISBA 2016: Reframing respite - Maureen Flynn

Iriss.fm, Episode 171
Published on 22 Feb 2017

The Australian National Disability Insurance Scheme was created in 2013, and builds on lessons learned from other countries relating to self-directed support and personalisation. It hopes to enable social and economic participation as citizens for people with disabilities with a full roll-out by 2020.

Maureen Flynn, National Disability Insurance Scheme Transition Project Officer and Support Coordinator at Interchange Illawarra Inc, in New South Wales, Australia, speaks about the scheme and some of the issues involved.

Introduced by Donald Macleod, Conference Chair.

Recorded at the 10th International Short Break Association conference, 13–15 September 2016, Edinburgh, Scotland.

Date of recording
Audio transcript

DM - Donald Macleod
MF - Maureen Flynn

DM It is now my pleasure to introduce Maureen Flynn, who is Project Officer and Transition Support Co-ordinator with Interchange Illawarra Incorporated in New South Wales, Australia. Maureen will talk to us about the transformational changes taking place throughout Australia with a move to individualised funding packages of support for people with disability, their families and carers. It's known as consumer directed care. 

MF So I guess I am speaking as a staff member of Interchange Illawarra, but as it says in the programme as well, my experience before I started working this year with Interchange, has actually been working with respite providers across Australia on both age care and disability reforms that are happening across the country, working with respite providers as they need to transition to these new reforms. And so, everything that I speak to you about today is not just from my experience with Interchange Illawarra, but also from my experience with a number of respite providers across the country of Australia. 
To start with I just wanted to talk about International contacts that led to Australia's reforming the disability space and the respite space. Before I start talking about the challenge that these reforms present to Not for Profits, and in particular to respite providers, and then I wanted to talk about some innovations that I believe are happening in the respite space in Australia, and that I believe can survive into these new reforms, and should survive into these new reforms. And finally, I wanted to talk about, I guess the solution to the challenges that face respite providers in Australia and, perhaps also from what I am hearing at this ISBA conference, everywhere internationally, as funding dollars get tighter, resources get tighter and scarcer, that we are asked to do more with limited funds.

So, I guess to set the scene internationally, I think really things started with the United Nations convention on the rights of people with disability, which basically announced to the world that people with disability are not sub-human, they are not objects of state protectionism, it is not ok to leave people in institutions, it is not ok to say that they are separate to the rest of society and it is not ok that people with disability are objects of medical experimentation and other horrible things. People with disability are people, first and foremost, like you and I, and they have the right to be seen as well, like you and I. And, I guess at the same time that reform, or that convention, was ratified and implemented, organisation through nations across the world had to start asking themselves, are we actually being inclusive in our practice and are we actually partnering with people with disability, and their families and carers, to create a better world that is fairer for people with disabilities and support the life that they choice? And, I guess Australia's response to that was formed by looking around at other countries and seeing what countries like Canada, like the United Kingdom, like Ireland, and a number of other nations, were doing around personalisation and also self-directed budgets, or individualised budgets. So, to me, personalisation is about tailoring the supports, that you provide, to the wants and needs of the user. So, in the case of people with disability and their carers and families, it's about asking people what they want and need and the who, what, when, where and how of how that should happen. And, that choice and control is not a luxury, it is actually an expectation that it should be accessible and possible for people with disabilities and their carers and families. At the same time as the Australian government looked towards self-directed budgets, or individualised budgets, to think about tailoring budgets to a person in their own right on the basis of their support needs now and over time. I guess they looked at all of these things happening internationally and said, "actually, when we look at Australia's current system of disability reform, it is confusing and it is unfair. It is not consistent between states and territories and it is dependent on where you live as to what you will receive. Currently organisations receive block funding and it is up to the organisation to choose, I guess, how they are best able to allocate resources to people with disabilities and their families and carers. The Australian government looked at this situation and said, "we can do better, we have ratified the United Nations convention on the rights of people with disability and we think we need to do better. People with disabilities are demanding that we do better and we should do better." And so, the answer was the National Disability Insurance Scheme, which was formulated with the NDIS Act of 2013. It had bipartisan support from both major parties and, indeed, from minority parties in government at the time, and it still has bipartisan support. This reform was about a national, consistent scheme across Australia, that will support, by two thousand and twenty at full rollout, forty six hundred thousand people with disability, to be supported to achieve social and economic participation as citizens within Australia. And so, I guess in terms of the reform itself, it was around looking at personalisation and around individualised budgets, but it was also thinking about community inclusion and what meaningful inclusion is for people with disabilities, their families and carers. And, I guess, moving power from government and providers, through the compactual arrangements that existed, and putting power back with the user, or the person with disability, to make choices and decisions about how they lived their own life on the basis of what they thought a good life was for themselves and not what other people told them a good life should be. I guess the insurance scheme part of the National Disability Insurance Scheme is around people with disability in Australia shouldn't need to bear the cost of disability, and their families and carers shouldn't need to bear the cost of disability, on their own and, in fact, as a Nation we should invest in supporting people with disability to be better included and better able to participate in our society. Therefore, the right support should be available at the right time, and on the basis of when and where it is needed. And that if we support people early on, their support needs may, indeed, decrease over time. So, that is why they went for an insurance scheme approach. It is the biggest reform in Australia since Medicare in the 1970s and has had, I guess, cataclysmic implications for Not for Profits across the country. 

Who is eligible for the NDIS? People who are under the age of sixty five, if people are over the age of 65 they are eligible for a similar age care reform that is taking place at the same time. They need to be an Australian citizen or resident, obviously, and they must have a permanent impairment and needs that can't be met by mainstream or community services, because the reform is about inclusion. So, in terms of permanent impairment, that actually means that it's not just a conventional definition of disability that are included within the insurance scheme, people with chronic illness who have significant levels of impairment can be funded through this scheme, and also people with psycho-social disability, or mental illness, may be funded through this scheme, depending on whether or not access to this scheme will support meaningful social and economic participation for those people. 

Once somebody is deemed eligible for the scheme and gets past, I guess, that sort of gateway, the NDIS is about achieving social and economic participation with reasonable and necessary support, and that is in the legislation. So, reasonable and necessary support for a person with disability means that it must be related to the person's disability. It can't fund things that aren't related to disability. It must not include day to day living costs that don't relate to the person's disability, but it must be beneficial and effective for the individual. In theory this sounds very lovely and sensible and common sense, unfortunately this has meant, which I will talk about in a bit, there have been some challenges for a number of people with disabilities and their carers and families in the current trial sites, around things like short breaks, because the agency has said it's not necessary and reasonable to fund a family holiday with the person with disability, we will fund the support worker to attend the holiday and support you on that holiday, but we won't provide any kind of contribution towards the cost of going on that holiday. And so, we at Interchange Illawarra, and many other providers, who have worked for a long time with people with disability and know exactly how effective short breaks can be, things like short breaks can be, are hoping that they will move towards an outcome where they will pullback from that position, but at the moment that is the position because of reasonable and necessary, which is in the legislation. 

So, in terms of Not for Profits, I guess to preface talking about respite or short break providers in Australia, many of the challenges within the National Disability Insurance Scheme implementation apply generally to Not for Profits, and then there is an added layer of challenges for respite providers. So, I just want to start by talking about the generalised challenges for Not for Profits, and then move on to the layers that are more complex for respite providers, as they navigate this reform in Australia. So, I guess before the advent of the NDIS, government contracts were paid in advance to the provider, and not given to the person with disability or their carer or family or their nominee in their own right. Now, in NDIS world, you are a business, you get your dollars paid after the service is delivered, by the customer, and if the customer doesn't like you service and goes elsewhere, and no customer wants your service, you go out of business, and I guess that, by extension, means that previously the government and providers had the selling power, they told you what you got and you had to be grateful for it. Now it's the person with disability and their nominees who have purchasing power and can say, this is what we want and this is what we need and if you can't give it to us, see you later. And I guess that also, by extension, meant that previously there was a pretty stable market, it was pretty predictable. You got told, the government told providers what programmes could be funded, what outcomes needed to be met, and that's what you got. Now, we have a disrupted market. With support and providers people can choose to purchase from non-disability specific providers if they so choose, they can ask that we deliver something totally different to what we have done in the past, and as an organisation we need to ask ourselves whether or not that it something we can do, or should do, and if we can't provide it, we might lose a customer.

I guess people can self-manage their funds and choose not to use a provider at all and that is also part of the disrupted market, now, in Australia. Again, with this movement towards NDIS, previously there was a pretty basic business model required for a Not for Profit organisation because they had the certainty of knowing that funds were coming in, this is the amount of client that we can have on our books and be at capacity. Things were pretty stable to strategically think about and to business plan for. Now it's obviously a much more complex environment and we really are having to think like any other business, and that actually does mean that we need new skill sets for all of our staff and, I guess, much more complex skills sets that traditionally, perhaps, staff members wouldn't have had. I'm not saying that staff now aren't skilled, but they are specialised in the skills that they have. Now there is much more of an emphasis on staff members being marketers, including frontline staff, have to be marketers to the customer, but also thinking about really strategic business planning and being really aware of cost drivers in your organisation, to know if you can even continue to provide the support that previously you might have not had to worry about at all. And I guess my feeling, personally from working with lots of Not for Profits, is that Not for Profits do what they do because they believe that people with disability are just as important as everyone else in our society and that they have the same rights as everyone else to the good life, so to family, to friends, to relationships, to feeling safe, to having a home to live in, to being part of a community in a meaningful way. That is why Not for Profits do what they do and that, actually, the support that providers provide can be enablers or facilitators for these things and that's why we should care, as Not for Profits, about why we do what we do. But I guess in times of uncertainty we can get pretty stressed, we can get afraid, we can concentrate on the negatives and we face mission drift. As some pretty tough existential questions start to surface amongst organisations.

So, some of the questions that organisations in Australia are asking themselves with this reform are things like, how do we learn to run ourselves like a business without losing values and culture around putting people first? And in the midst of change, how do make sure we don't slip, and I'm quoting my General Manager Glenda Pearce here, into treating people like commodities or like dollar signs, walking dollar signs? And in a world of decreasing government funds, how do we remain viable and continue to partner with people with disabilities, their families and the community, to do what we believe is good in this world? These are all extremely challenging questions, generally for Not for Profits, but then there is also an added layer of challenge for respite providers in this new scheme. Firstly, and we have heard about this from carers and other people at this conference already, some respite in Australia, sadly, hasn't been very responsive or flexible, it hasn't been very trustworthy or comfortable for the person with disability or, for the carer, it hasn't provided much of a break, hasn't been about outcomes and rights for people with disability, for example, some centre based respites. It's made carers feel guilty and also the definition of respite in Australia is not a very clear one for many people from cold background, so culturally and linguistically diverse background, but also for indigenous Australians. So many people get confused and say, "What is respite? I don't even know what you're talking about." It's quite a confusing word for people and so there has been an unmet need for respite but a very low uptake of respite, according to our latest government data. It's a troubling, respite has a troubling definition as well, for some people with disability, and also for their carers, and in Australia disability rights advocates did speak extensively to the government about respite within the context of the NDIS and how hurtful respite has been for some people for some people with disability, and their carers. So, that has presented one challenge for respite providers, as initially the NDIS basically didn't have respite within its parameters. It was known by Bruce Bonyhady, who is the Chair of the National Disability Insurance Agency, who administers the scheme, as the service type that cannot be named because that's how hated respite was felt to be. Of course, they didn't actually speak to respite providers or service users who were happy with respite to know further information about how good quality respite was rolling out in the country, but this was the perception of respite and this shaped the beginning of the scheme. And I guess the other thing about the National Disability Insurance Scheme, which is really complicated for service providers, is that the insurance scheme is about putting people with disability at the centre of support and traditionally, in Australia, respite had been about delivering outcomes for both the carer and for the person with disability. In the NDIS it's very difficult to justify respite to the planner who goes ahead and creates the budget for the person with disability when respite has dual outcomes. Because if they cannot see a benefit for the person with disability, it cannot be funded in the NDIS plan. So, that doesn't mean that respite can't happen, there are provisions for respite, now, within the NDIS, because the agency realised, we kind of need respite for carers, but it makes it quite difficult for respite providers to educate their families, I guess, about how to talk about respite and how to talk about the positive outcomes for the person with disability, as well as for themselves. The other thing that draws on from both of those issues, for respite providers, is that the government just doesn't really understand it very well and they are not very aware of the innovations that have happened in the space, nationally, across states and territories.

I just wanted to quickly talk about the respite existential crisis as a result of these challenges. There are a number of quality respite providers that I could tell you about who have all done wonderful things, but even those innovative respite providers are starting to ask themselves these questions around, who exactly is respite for and why if we are putting people with disability at the centre of support? What world are we actually, as respite providers, trying to build in partnership with people with disabilities and their families? And, actually, do we still need respite if we fund people with disabilities adequately so that family members, carers, friends, can be mothers, fathers, sons, daughters, friends, rather than carers. With all these questions floating in our mind, is there actually a place for respite providers in this new world? I would say to that last question, yes there is definitely a place for respite providers in this new National Disability Insurance Scheme World. Often respite providers have had to fill in gaps in the service system, they have had to work in partnership with other service providers, they have had to harness a casual workforce that can be flexible and responsive and quick, they have been familiar and committed to people with disabilities and their carers, because they are often smaller and quite used to working to a number of different people with disabilities, different diagnoses and needs, and therefore, I think if their business process is sound they are more likely to succeed in this brave new world on the basis of delivering quality support, regardless of whether or not they are called respite or community inclusion or something else.

I guess the next slide looks, to reinforce that, looks at some flexible respite options in Australia that, I believe, have been really effective in delivering outcomes for both the person with disability and for the carer. so, I believe that these flexible family supports should survive in the new world. They are efficient, they are cost effective, they build the capacity of not just people with disability to build new relationships and skills, but also the capacity of the community to be more inclusive of people with disabilities, which is the point of our national reform. So, I guess some of the options, or some of the things that I wanted to talk about, involve programmes about encouraging those inclusive communities, so some innovative respite options encourage growing personal support networks and building the capacity of the community through reimbursing informal circles of support for community inclusion ad how it's delivered. So, that could be through a red balloon voucher for support provided, it could be through some petrol vouchers to cover the cost of taking the person with disability out into the community, it could be a meal out or some flowers to say thank you to, you know, an extended family member or friend for doing additional hours of support with the person with disability and including them in their community. Volunteering programmes are not currently recognised within the National Disability Insurance Scheme, which is quite challenging for Interchange Illawarra when we have a mixed model of support, so we have a number of one to one volunteer arrangements where volunteers take people with disability out into the community and provide in home support, as well as paid workers, we also have a number of social and peer support programmes, (... unclear) models that use volunteers to try and get people out into the community and less socially isolated. There have also been a number of family host programmes, that offer support, where families basically volunteer to offer some support to people with disabilities and their families, like giving the person with disability the opportunity to go to a different home, have a different way of, I guess, living and seeing the other side of how the people live, but also being included in that other person's life, as an extended member of their family. Those things, I think, should exist in the National Disability Insurance Scheme because they are about social and economic participation and they are about community inclusion.

Some of the other innovations that have happened in the space around consumer directed respite care budgets for the carer, so the carer will have that in their own right, and that's being trialled by some organisations nationally, we are not sure what's going to happen to those in this new reform, we are not sure where it will fit, what will happen with carer support, whether or not those budgets will continue to exist, but some carers have done some really innovative, cool things with those budgets, for themselves and for the person that they care for, to do with short break holidays or to do with different, paying for different memberships and subscription fees and things like that.

And finally, some community projects have started springing up around, I guess social enterprises you would call them, around getting people with disability to do things in their communities, so making those social relationships and interactions, but are also helping local businesses to continue to thrive locally too. Bright Force, which is nowhere near Interchange Illawarra, it's in New England, in New South Wales, an organisation has set up a social enterprise around environmentalism and getting people with disability to help local businesses be more environmentally aware, and that's very cool.

So, I guess, how do we ensure these things continue? At Interchange Illawarra we think the answer is to work together, like Amy said, to do more or to collaborate. Let's create or achieve the same thing, inclusion for people with disability, but let's do it together. In Australia one collaboration possibility often discussed is a merger or an acquisition, so to achieve scale and scope and size in the NDIS that's what we need to do and there is merit to some of that talk, but I don't think it's the only way to collaborate, as Amy also indicated. I think we need to get smarter about how we collaborate. We need to think about how we have a united voice to government, how we share ideas and creativity to tackle issues and challenges, nationally and internationally, like at ISBA. We need to talk about approaches that can spark innovation and change, different channels to accessing community and different markets and think about sharing cost and risk when we try out these new ideas and creative approaches. So, I've just got a couple of examples of innovation that Interchange Illawarra has been involved in and then I just wanted to finish on some lessons that, I guess, we have learned as a result of these reforms.

A first example is around alliances and partnerships, both at a regional and a state level. So, Interchange has partnered with a regional alliance of Not for Profit disability providers to work together collegially to do more for people with disability and to deliver better outcomes for people with disability in our regional area and, in fact, one of the CEOs, who is a member of that alliance, is somewhere in this room. Basically, a group of CEOs, I think there are now 16 member organisations, come together and talk about delivering better outcomes, trying to do more for people with disability more effectively and efficiently, sharing ideas about that, but also talking about, we've got a website now to guide people towards the appropriate support that they might need, also talking about sharing documentation to try and reduce the back of house stuff that needs to happen in the new reforms, and, I guess, shared staffing pools, and strategies like that to share workforce. We are also part of a state based alliance with organisations that are similar to Interchange Illawarra in terms of shared values, and that organisation, that alliance is very unofficial but it is more around trying to mentor each other through the biggest change since Medicare and share our ideas about innovative supports and continuing those innovative supports going forward into the NDIS. More so trying to partner more across sectors and across markets, so one of the projects that we have just finished working on has been a project with Age Care and with the University of Wollongong, with our local university. I guess, creating an inclusive space for people who are agent carers for children with intellectual disability and providing appropriate safe and inclusive housing for those people, and as part of that project we have also added on a respite project to create an inclusive respite space, called Camera House, and we are now in partnership with another disability provider and with the age care facilitator to create that space. I also think that small social enterprises around getting people out into the community, people with disability able to make those relationships and do more in their own community, but also have the community, I guess, be more aware of people with disabilities, but also other social issues are really important and also being able to demonstrate the social capital that organisations like ours provide has become more important, so partnering with local businesses to think about generating that social capital and articulating that social capital and then local businesses helping us to continue our inclusive project work.

Finally, I just wanted to end with some moving forward tips. What I have learned in two years of policy about respite in a consumer directive care market where the person with disability is the centre, now, of support. So, I guess some of these seem pretty obvious but you would be amazed, in Australia, how many times I would repeat these to providers across the nation. I think, as providers, we need to ask ourselves, why do we exist? Where are we headed? And most importantly, why the heck should anybody care? I think we need to business plan around these questions and have strategies around moving forward. Most importantly, we need to know how we are going to pay for things that matter to us and to the people who we work with, and if the government will not fund it then maybe we need to find another way, are we just going to let innovative support slide because the government will not fund it, or do we need to get more creative about how we do fund something? This one seems really obviously but it's amazing how many times I repeat it to people in Australia, we need to talk to people with disabilities and their carers, but not just talk, listen to what they say and hear them. Listen, take it in, engage and see if we are actually providing what they want, are we actually providing a partnering with them to create an inclusive society? And around this as well, we need to engage our community with our vision and the vision of the people that we serve around what a good life is, so that we can continue to be partners in this. We need to keep an open mind and try and think outside the box about how we provide the supports we provide now and in the future. And, I guess, from my experience, from talking with providers, even just from being at this conference, I truly believe that if providers do all of these things, if they don't just talk about it, but act upon it, that is when we become true organisational partners in creating fairer and more inclusive societies for people with disabilities and their carer.