Bronwyn Morkham on the issue of YPINH

Q:There has been a lot of discussion around the issue of YPINH, but I think that many people are still unclear on who the real people behind this broad term are. What are the types of disabilities or conditions that these young people live with?

A: Young people in nursing homes by and large are young people with acquired disabilities – in that they are a bit distinct from those that were born with a disability. Most of these Young people have had a life as an able bodied person in some capacity or other and they’ve suffered a catastrophic injury or been diagnosed with a degenerative disease that has left them with an increased need for support. So some of these young people for example have been injured in car accidents – where they may have acquired spinal chord or brain injuries. Others may have been diagnosed with MS, Muscular Dystrophy or Parkinsons disease. But the one thing they all share in common is a need for long term support and the desire to try and live their life with as much dignity and independence as they can. We don’t really know the exact breakdown of the type of disabilities these people have because that information isn’t collected – but we estimate that roughly – 35% have Acquired Brain Injuries, 30% have spinal chord or other physical injuries, 30% have neuro-degenerative diseases like MS and about 10% have a mental health disability.
It’s really hard to say exactly, as the nursing homes don’t collect any data on it – so this is just what we’ve been able to garner from little bits of research here and there.

Q: Why is it that this issue of YPINH has only become a phenomenon of the last few decades?

A: This isn’t a recent issue nor is it a new one – its been around for around for about 40 years – and is a growing problem. In a way we are victims of our own success. YPINH are really – as I said before – those who have managed to survive these catastrophic injuries, or have been able to live a longer life with a disease. This outcome is largely because we’ve got terrific medical technologies now and a wonderful health care system. People who in the past would not have survived a car accident, now do survive, but they live with acquired disabilites with long term care and support. And the same for degenerative diseases, their ability to survive – is much greater than it ever was.

So this is a growing group and I guess until medical technology reaches a point where it can save lives and leave you with your physical, emotional and mental independence intact – this is going to be something we have to deal with.

Q: As the eyes, ears and mind behind the national alliance, can you tell me a bit about this organisation – how it came to be and how it works on this issue?

A: The National Alliance began in 2002, when a group of concerned families and stake holders met at the launch of the Victorian state disability plan and realised that young people living in aged care facilities – the ones with high support needs – had not been included. As a result of this, a decision was made to hold a national summit. We brought politicians from every parliament in the country to Melbourne. We had every stake holder including young people in aged care facilities at the summit – and on that day it was decided that a national voice was needed for this issue. The National Aliance was formed at this point and its has worked fairly hard over the last 3 ½ years to make people aware of the issue – and to make them understand that this is a situation that any one of us could find ourselves confronting. Life is very fragile at times and we all assume the system of support will be there to help us when we need it. But this issue shows that the system isn’t there and in fact we need to do a lot more to ensure that people have the lives we all expect to have, should we face these same circumstances. So from 2002 we worked hard across all state boundaries.

In order to get the result that we have now through COAG – we got a senate inquiry into the issue and ran a large media campaign. At the heart of all our efforts were these young people and their families.

Q: I imagine that involving the people that are affected by this issue and exposing them to the public eye was and is a really powerful way to get your message across.

A: Well yes, I think it has been really effective, as these are people that don’t have a voice. They don’t get the opportunity to speak for themselves – and by asking them to tell their stories to the media and the public in general it has been a very, very compelling campaign. And again, even when going to visit politicians, it has always been a matter of these young people and their families making that visit and telling their story. It stops it being just another issue – a faceless issue. It actually makes the person enter the issue very directly, so it has really been a very good tactic I suppose.

Q: I believe that the National Alliance has put forward a Blueprint for change – what kind of solutions does this offer YPINH?

A: The National Alliance Blueprint for change, is very focused on addressing the shortfalls of the current system. The system we’ve got is antiquated and totally out of touch with the needs that we as a community have. At the moment you are considered young and disabled until the age of 65. Once you turn 65 – you’re just old. This is something that has been carried over from policies that were drafted in 1909, a time when most people were lucky to reach 55. This has meant that young people by default, have access to a whole range of services and support – that disappear the minute you turn 65. The disability doesn’t disappear – but your support does. So what we want to see – is a complete reform of the current system. So that its stops being support according to how old you are – but support according to your level of need. And to do that we want to see young people and their families involved very directly in the development of services.

Under the old system, people with disabilities were never involved in the decision making. You had others making decisions about what was best for them – where they should live and how they should be supported. The National Alliance Blueprint wants to see young people with acquired disabilities and their families involved in the service development from the very outset, so that the services that come about – the ones they are going to use – are tailored to their needs. We want to see all stake holders around the table talking about how best to progress. Part of the Blueprint – is that we need a range of options on the spectrum. There’s no one size fits all answer to this. In the same way that none of us expect to live in exactly the same house all of our lives, so these young people will have needs and circumstances that change. Where they live and how they’re supported will need to change and be flexible too.

We had an instance of a young woman who was 16 that suffered an assault and was left with a very severe brain injury. She wanted to go home with her family – and they wanted her home. She’s now 21 and wants to go to university which means that staying at home for her is difficult. We need now to try and provide something that will help her to achieve her aim of going to uni. If she then wants to go on and get married, once again the support will have to change around where she’s up to in her life and what she’s doing.

At the moment there is so little capacity in the system to provide any support, that that flexibility that is needed simply doesn’t exist. You either take what’s there or you don’t have anything.

Q: Does this blueprint for change include support for home based care as opposed to institutionalised care?

A: Absolutely. Some of these young people are in their early teens and for many of them moving out of the nursing homes will mean moving back to their families. There are other young people for example that have a degenerative disease who have young families. They need to be back being a parent to their children, but they can’t do that at the moment without that support going into the home.

At the moment – because the system we have has so little capacity – families and carers are left with a huge amount of responsibility for support. Under the National Alliance Blueprint, if somebody does go home it is not meant to take the place of the provision of appropriate support. The new system should be providing them with the support they need. So again it comes back to – starting with the person who needs the support and looking with them at what they need and how it needs to be configured. If that’s done you’ll end up with a very effective system, that’s cost effective too, because you’re delivering what people need and not what somebody’s decided they should have.

Q: The financial commitment that has been made by COAG is very welcome news. Do you know the details of the governments plan to move forward? How are resources being allocated and what programs are being implemented?

A: Well this is a big challenge – I mean as you say it’s a terrific first step, but it’s very much only a first step. It’s not a complete answer yet. The money that has been put forward sounds like a lot of money, but in fact we think that it will only get to about 700 of the 6500 young people nationally.

The Government has made the money available – from the 1st July of this year, but the total amount of COAG money is not going to be made available at the start – it’s rolled out over 5 years. So in the 1st year – something like 20 million from Commonwealth pot will be made available – and each year this amount will grow.

What needs to be considered is the fact that those people that are moved out of nursing homes in the first year are going to have to be supported for the remaining 4 years of the program. The same goes for the people you bring out in the 2nd and 3rd years – they too need to be supported for the remainder. So it will start off with a small amount and build exponentially as you go through.

Because of this it is anticipated that there will be a fair bit of assessment and planning in the 1st year – but very little recurrent support. And although the money will come on line by July 1st – nothing will be done with it until the states have signed bilateral agreements with the Commonwealth that set out the plan. Until this happens the state governments can’t act, because they don’t have anything to act from.

Q: Does the National Alliance have quite an influential voice in determining the shape of these agreements and how this money will be spent?

A: I think so. Through the work we have done there is general agreement and understanding that something has got to be done – and it has got to be substantial. The imperatives though are within the limits of the system and it’s a limited amount of money and a limited time in which to do it. So within those constraints we want to see as much done as can be done. We will be influencing government very strongly and we will be maintaining a vigilant position too, to see that the services that are developed are the right ones.

What we’re advocating is what I mentioned before – that people start their planning with the person affected. We can’t be caught in the trap of thinking that the answer to this is simply to build buildings and put people in them. These people need the opportunity to participate in the development of the service while it’s being developed and while it’s up and running. People must be consulted from the very outset – and from that, the type of support service that they need will be developed. For some people it will be sharing a house, for others it may be living in a self-contained unit with support coming in. Others will go home and those with very high support needs will be provided with high level nursing care that they require.

We’re hoping that state governments will take this approach. We’re talking constantly with them about how this is to work and work well – and eventually I suppose – how we can start to do something that can deliver a better system of long term care and support for everybody, not just this group.

Q: Do you think that this will be the case?

A: I hope so. There is a really strong desire from all political sides to see something genuinely done. I’m sure it will get through, but these things can take a bit of time. Hopefully by July 1st the agreements will be in place, but if not it shouldn’t be too much longer. We only really have 5 years for this program, so they can’t afford to afford to wait to long

Q: Do you have any suggestions on how young Australians that want to become involved can take action on this issue?

A: Absolutely. They can have a look at the National Alliance website at www.ypinh.org.au. This website gives suggestions on a range of activities they can do. People can sign up to receive the National Alliance newsletter, they can find information on upcoming events and fundraisers and can make donations to our organisation. We also have a young woman called Amy Vanson who is walking from Brisbane to Canberra to raise awareness of this issue. She’s trying to get financial support for respite and for holidays for young people in nursing homes. So they can make a donation to Amy through her website www.walkwitharose.com

People may think that because we’ve got this COAG program underway – that the job’s done. The job is far from done so we need people to talk to their local politicians – state and federal – talk to them about this issue – as part of a broad sense of long term support that the community – needs to have in place. The National Alliance has created a kit to assist young people to take this kind of action, action that will in turn help the government to do the right thing.