Pre-recorded: 10.30pm 18.2.15
McLaren: Over the last two days we’ve kept you as up to date as possible with what I think is a very important initiative. A very important Senate inquiry that is taking place in Perth and it is looking at the issue of young Australians with a disability living in aged care homes. Now as we have said every day by the grace of god go us that we’re not one of the at least 6000 young Australians who’s fate is already quite miserable because of the way they have been born or the way that their life has turned out. They’re mentally or physically disabled to the point where many of their parents or their carers just find it impossible logistically, mentally, socially, physically to look after them within the family home so they look for an alternative place of care and it seems the best this country can do for these 6000 people is to stick them in a nursing home with really old people, with dementia who are deaf, blind, living an incredibly slow pace of life and of course these are people who, yes are physically or mentally disabled, but they are young. They are young and they are surrounded by the old and the dying and that is not a criticism of the old and the dying in the nursing homes of course many of them wouldn’t want to be there either but surely as a country we can do better for the 6000 young people for whom this is their fate, this could be there life for decade upon decade upon decade.
Could you imagine the extra strain that puts on their mental health, let alone that of their parents, and the wider community? Well, somebody is taken up the baton of this and she is to be commended its Senator Linda Reynolds. She is from WA, she is overseeing the hearings that are taking place in Perth as we speak and I am very glad to say the Senator is on the phone.
Linda thank you for giving us your time.
Reynolds: Michael thank you very much and thank you to your listeners as well for supporting and taking an interest in this absolutely dreadful situation. It doesn’t need to be this way.
McLaren: No I mean it’s the least we can do and of course I suppose when you look at issues like this, this is where governments and a lot of politicians cop a lot of flak and often rightfully so. But this is where governments and politicians can make a very positive difference on behalf of the community. Now the numbers are significant, 6000 at least, young Australians who are living in aged care homes because they’ve got disabilities. I mean it’s just heartbreaking.
Reynolds: Look it’s absolutely shocking and with the inquiry we’ve been here in Perth, and in fact, we are in Sydney tomorrow hearing from people here in Sydney about their experiences and it is the most heart wrenching thing, just listening to these people’s stories. In Perth we came across a 17 year old, a 17 year old young man who was in aged care and nursing homes are absolutely no place for young Australians. I mean they are where people go to be cared for in the end stage of their lives. The average age is 84 and they are just not set up to cater for the needs of younger people and also people with disabilities.
McLaren: Now Linda the political cynical in me says we have over the years, not so much under your Government, but certainly the previous Governments thrown literally billions of dollars in all sorts of directions for all sorts of people, many of which aren’t citizens giving them housing, giving them welcome hampers, giving them this giving them that, giving them legal aid. There is money for all this sort of stuff yet it seems there is not enough money left over to care for these 6000 Australian youth. I mean something has gone horrible wrong down the command chain hasn’t it.
Reynolds: Absolutely Michael and just listening to the stories. Any of your listeners can go on and have a look online at some of these stories and I’ve got to say it’s actually not an issue of money. But where we are seeing it is people with complex needs, so one or more like a disability or other health needs, is the disability schemes in states have been pointing to health and saying well we’re not going to deal with it and health say well it is a disability issue we’re not going to deal with it. So parents, or spouses or families are left with no options and the incredible guilt they feel for having to do this is unimaginably horrible.
McLaren: I mean the burden is shared isn’t it. As you say obviously the primary focus here is on the youth but equally the parents who have to make that very unenviable call about saying look, it’s simply not working at home for a whole lot of reasons, we need to put John or Jane into a facility and they don’t have a choice. They don’t that they put them in a nursing home or that’s it. I mean the toll it must take on the parents would be huge.
Reynolds: Look the guilt they feel, and look a lot of parents, we met some in Perth and some we will meet tomorrow is they give up their jobs, the homes are not always anywhere near where they live. Just to give you an idea, younger people, a lot of them say 25 per cent actually have children. So quite often they lose contact with their children, their spouses, their friends and in fact over 85 per cent don’t get a single visitor or friend in a year.
McLaren: That is horrible; I mean what does that say about society?
Reynolds: And also too, I visited some amazing young women in nursing homes last week in Geelong. Just walking in there it brings it alive. The situation with the elderly, people with dementia so they live according to an elderly’s routine when they eat, when they sleep, when they go to the toilet, having to wear incontinence pads, they can’t have their music, they don’t go out, they get no social contact and they don’t get the rehabilitation they need so quite often after one or two years they become institutionalised and they go backwards.
McLaren: They’re forgotten.
Reynolds: They are absolutely forgotten.
McLaren: Out of sight out of mind.Now is this the first such senatorial inquiry into this sort of issue?
Reynolds: No there was an inquiry a few years ago, a slighter broader inquiry and there was a program that was implemented nationally by the states, which has had some success in getting young people out. But I think what I am seeing already is one of the failings is that the departments don’t work together. So if you’ve got someone with a disability. Because quite often it’s for example acquired brain injuries, we’ve got, where someone has had an accident or stroke.
Reynolds: And they and their families don’t know what to do so there is no information. I mean how simple is that to fix, is there is nowhere to go to get new information. I mean health, welfare, what they do about their housing, and all of those sorts of things and that surely has got to be an easy fix.
McLaren: I mean that’s not big bucks sort of stuff is it – no.
McLaren: Now the NDIS, talking about money and the like, there has been a focus on disabilities and that is good, over the last couple of years. The NDIS for all its funding faults is starting to be rolled out and experimented, I suppose and in fact I was reading yesterday that there is a glimmer of hope with the NDIS that with some of that funding, with some of that focus, because some positive changes might be able to take place. What are you learning in this journey here?
Reynolds: Well I think the first thing is, I mean I went in with a slightly sceptical – sort of – can this make a difference. I have been to the trial sites and I’m also on the committee and I am seeing that glimmer of hope. And I think the big difference is that they are looking at the person. So what people often say to me in this inquiry is that ‘I’ve lost control of my life’, ‘I can’t make a decision, I can’t make any decisions. But with the NDIS it’s a partnership between the individual and the scheme, so they come up with their own plans, what do they need and they take ownership of it, and they have got hope and a pathway. The issue we are seeing though again is in relation to disability, that people with disabilities might touch on the mental health sphere, juvenile justice sometimes, transport, health, employment, education and training. So they might have six or seven different people they talk to about different issues and they are not treated as a whole.
Reynolds: I think that is the big thing is that how to get everybody working together for the individual rather than being so fragmented and I think that is where past schemes have failed.
McLaren: So what you’re saying is aside from the new facilities that will have to be built to help these people or some new programs developed or further rolled out of course to cater for the needs of these. Straight away there has to be better communication between Federal, State and Local jurisdictions and their respective administrators doesn’t there?
Reynolds: Absolutely there does and with the NDIS there is a trial site in Geelong and you could see they were starting to do that, started getting child protection in and helping, and saying lets look at the person and I’ll give you a classic example – I met an amazing young woman who was in a facility in Geelong, she’s got Spinal Bifida, she’s a double leg amputee but she’s not in aged care because of that, because she was total mobile, independent, studying – a really kickass young woman but she’s in a nursing home for two and a half years because she has a pressure sore. The health department are not fixing it and so this is why she’s stuck. Can you believe it?
McLaren: I mean there is no common sense.
Reynolds: I mean two and a half years, a 25 year old is stuck in a nursing home. So she has lost her friendships, her social life, her studies, her house because she has got a bed sore. I mean you hear so many examples of this.
McLaren: I mean the parents must tear their hair out.
Reynolds: Well that is the people who are lucky enough to have parents engaged in their life.
McLaren: True. That’s true.
Reynolds: The other example was rehabilitation won’t take – you know somebody who has an accident or stroke victims – even young stroke victims- if they don’t have a family in there batting for them or doing their rehabilitation in the nursing home and giving them a bath everyday they just fade away.
McLaren: Well look you’re to be commended for doing this. And I know you’re not doing this for publicity reasons. But I am told you have quietly made it a bit of your cause in the Senate to get something done on this. So I think a lot of people out there, the silent majority will be cheering you on and wishing you all strength to your arm and if you don’t mind Senator Reynolds we’ll keep in touch over the progress of this and see what comes of it all.
Reynolds: Please do and I think it’s the voices of people like yourself and your listeners is just keeping-
Because this is just so fixable, it is just so fixable. That is what makes me so angry is that we just need to keep the pressure on and bring some common sense into it.
McLaren: Yep well, well done, good luck and we will stay in touch.
Reynolds: Thankyou it’s been a please, thankyou Michael.