WEDNESDAY, 9 MARCH 2022
SUBJECTS: Meeting with disability community on the Central Coast; Morrison Government’s cuts to NDIS packages; access to health services on the Central Coast.
BEV BROWN: Hello. My name's Bev Brown, and I have a son diagnosed with M.S. in 2006. And his marriage fell apart, and I have looked after him with the help of carers since 2010. It's a battle because I know the NDIS does a lot of good work, but every time your plan runs out, you have to battle for the next one. Depends on who you get to do that plan as to whether they're agreeable. I had one planner that wanted to put him in a facility because she reckoned that there was no way NDIS could cope with the amount of care we needed. I've ran out of money. One incident, I ran out, we were $10,000, just over $10,000 short. My carers battled on borrowed money off their families to keep working with Greg. I had a really good team, but that shouldn't happen. I didn't have the $10,000 to pay them and they went above and beyond to help us. And the first time I ran out of money, I've got one carer who's still waiting for $2,300 odd dollars. She's been to the plan manager that was doing it at the time, and that goes back to 2019. She kept asking for more and more. She was getting nowhere with the plan manager, so she got to NDIS direct. And they said, Oh, we're not debt collectors. And so, she's without that much money since 2019. She's been my rock, this particular carer, and she deserves to be paid for the hours that she put in. It's just - why should we have to fight? And you get a different answer every time you speak to somebody at NDIS. We're trying to get a new back for my son's lounge chair. It's a special chair. Every time you say something's being funded by NDIS, the price goes up, but we're waiting on this chair back and we thought it had been finalised in December. It got to February, and I can give them the benefit of the doubt for Christmas, but it got to February, so we started to ring again, the OT and myself have been ringing at least once a week and getting the same answer, it's gone to the right department to be sorted. Thursday, I rang, and I was told, you've got enough money in your package just to buy that outright. I said, Why wasn't I told this in the beginning? Oh, well, I'm telling you now. So now we've put the order in to the company to supply it, and it's at least a four week wait. Greg needs the support of this other back. It holds him up where he's going to end up with curved spinal curvature because the other one, he's got no support and he just flops over, he’s very weak on his left side. This shouldn't be happening, and I am told that even though we've got a good package and we have, these things, you shouldn't have to keep fighting, as I say. And then he – some days I'm in tears because I've had enough. I'm 74 this year and I think it's time I didn't have to fight. So, I just ask that everybody listen. If no one is involved with NDIS, they have no idea what goes on. And you know, my friends just think, Oh, god, never knew that happened. I think everybody just thinks that the NDIS just pays the money out, and that's it. I know there's a lot of families with young children with disabilities and really need help and they don't get help. But yeah, I just hope everybody listens and pays attention, and that the NDIS is well and truly supported.
JOURNALIST: So, when you hear the news that there will be cuts and other things that are going to limit the NDIS, what are your emotions?
BROWN: Oh, well I'm distressed, I'm not going to be around forever. What's going to happen to my son? I know he's deteriorating every year, but I hope he's got a few years left. But what I often wish for that he will go before me because no one else is going to do the fighting for him. It's hard as you get older,
JOURNALIST: So, what do you hope for the future in terms of?
BROWN: I hope in the future that every time your plan runs out that you don't have to fight for the next one and that they give you enough money. So, at the moment, we've got enough money to pay the carers, but it doesn't allow you extra money if, say, he has an accident and I've got to call a carer in to shower him clean him, change the bed, it doesn’t allow for that extra in your package so that you run close to running out. And as I said, I've run out twice and each time it's been a disaster
JOURNALIST: And has it's been a constant struggle since Greg’s diagnosis or is this just happening over the last few years for you?
BROWN: Well, before NDIS came on board I had a home care package and that worked well for a while, he didn't - back then, he didn't need as much care as he needs now. We've got 12 hours a day unless I call somebody else in for extra time.
JOURNALIST: So, who’s with Greg now when you’re here trying to appeal for more help, who's able to look after Greg?
BROWN: A carer. I've got a team of five at the moment, I'm just trying to find another one. And that is even hard. You go with your companies and there's so many stipulations. I've been with companies before. Now I hire people with their own ABN with experience, of course, they’ve dealt with clients, but I find that's a better way to go than to be going through. It's just so - so much happens. I've had companies ring me and say, sorry, the carer that was coming is ill and I've had to go and do the shift, but I'm beyond it now. That was in the early days, and I did do it, but I can't do it now.
JOURNALIST: So, while you're out there looking for more change and asking for help, there are carers back home looking after Greg that you have to pay for with money that you don't have?
JOURNALIST: And how does that make you feel?
BROWN: Well, it's frustrating. I get angry and I get very, very upset. It's just - it shouldn't be happening, people you know, they should – our disabled and our elderly and all that should be cared for. Greg worked right up until he could not work any longer, he worked for a company that really stood by him. They would send somebody to pick him up, take him to work, take him home and he would just potter around, dusting or something. That's when he could walk. He's in a wheelchair bound now is the who can't walk.
JOURNALIST: What did Greg do before his diagnosis?
BROWN: The last job he had, he worked for - we lived in Goulburn, and he worked for the Workers Club in Goulburn, and they were excellent. They carried him. They just gave him little things to do, as I said, picked him up, took him home. But he was Jack of all trades at the club. But before that, he did an apprenticeship with my husband. He was an upholsterer. But it got to a point, his hands - he's got no coordination, so that couldn't happen any longer. And yes, he went and got a job at the club, but he's never been without a job. He has never gone on Centrelink. He has always had a job until he could not work any longer. So, I feel that it's owed him to be looked after. And my husband and I worked from the time I was 15 and he was 14, we paid taxes all those years. I just think, you know, the government needs to look after the ones that need looking after.
JOURNALIST: Do you feel let down?
BROWN: I do in a way because I see I don't want to get on to another topic, but I see government money supporting other people that are coming into our country that have never contributed to our country getting a lot more support than some of our Australians.
JOURNALIST: So, is there anything else you'd like to add?
BROWN: No, I think that's my story, and I just hope that I don't have to fight for a much longer.
JOURNALIST: Thanks so much, thank you for sharing with us, really appreciate it. Thank you.
BILL SHORTEN, MEMBER FOR MARIBYRNONG: Hi, it's great to be on the Central Coast with the member for Dobell, Emma McBride, talking about one of the most important issues in the federal election, how to make the National Disability Insurance Scheme work for the participants and the families who depend upon it. We just heard from Bev talking about her son, Greg. Australia deserves better. Bev deserves better. Greg deserves better than the nightmare they're going through dealing with the National Disability Insurance Scheme. The Morrison Government has got an undeclared program of cutting people's NDIS plans or making people have to go to court to just get the minimum payments. Bev's son, Greg, was diagnosed with MS at 31. Bev has been caring for him for the last 16 years. There is no cure to MS, but Bev as an older family, older mother carer, shouldn't have to be dealing with the crazy red tape and bureaucracy of the NDIS. Most recently, they're trying to get a special seat. Greg has MS. He's not getting better. He needs this seat, so he doesn't damage his spine. This special seat, which will provide him comfort and less hospital bills in the future, is less than $3,000. The family have been waiting 10 weeks. They've been given the run-around. The NDIS is no longer acting in the interests of the people it was designed to set up to look after. So Labor, if elected, we will make sure that decisions are made in a timely fashion. If a decision on a piece of equipment which is fundamental to someone's health and wellbeing and their safety, if that decision can't be made within a certain time period, it should be deemed accepted rather than Bev, who's doing just a fantastic job, loving a son, and caring for him, having to deal with different people on each phone call, go through the red tape, all the medical reports. The Morrison Government is incompetent and dangerous when it comes to running the NDIS. Half a million people from little children to older people diagnosed with severe and permanent disability deserve better than being treated as numbers on an accounting ledger. This nation is generous enough and smart enough to provide modest packages of individual support, providing care for individuals. Happy to take any questions.
JOURNALIST: So, with things like GP shortages across the region, the state and money going towards Coronavirus relief and flood relief as well, does that factor in at all to these cuts to NDIS, or is this just money going elsewhere?
SHORTEN: Oh, listen, the Morrison Government wastes money like a fire hose, it sprays taxpayer cash like a fire hose on advertising themselves, promoting themselves. But why should it be someone with MS, a little child with autism who needs speech pathology or someone in a wheelchair who has to be the person who misses out when the Government's got another need? If they were fair dinkum, they wouldn't have wasted eight years on changing submarine contracts. They wouldn't have wasted money on government advertising. No, the Morrison Government uses people with disability as human shields. They say, Oh, we've got COVID, or we've got this or that. Therefore, the NDIS needs to be cut. That's not fair. It's not on. We're calling time on that rubbish. During COVID, people with disability were meant to be in the front of the queue. Yet we heard harrowing stories of carers and parents of people with disabilities without proper safety equipment, without access to rapid antigen tests, finding it difficult to get vaccinated, so when the Morrison Government says it puts people with disability at the front of the queue be very, very scared - because they're lying.
JOURNALIST: So how what will Labor's priority be? Will NDIS be at the top of the list?
SHORTEN: I don't think there is any issue any more important than making sure the NDIS is run to look after half a million of Australia's most vulnerable people. There's no problem in the NDIS that can't be solved by competent management. What we've got to do is treat the person with a disability and their carers and their family as important. Don't give them the run-around. Don't keep asking parents if their child has the same permanent disability year in, year out when there is no cure for these conditions. We've got to treat people as important. I would just say that I want the NDIS to treat every Australian with a disability the way that you would want someone in your own family to be treated if they had a profound and severe disability.
JOURNALIST: Some people don't make use of the NDIS, and they would assume it's not something that affects them. What would you want to say to those Australians?
SHORTEN: Disability is a fact of life. It can happen to anyone. Disability can be when you realize your precious baby child at six months or 12 months isn't developing in the way you hoped. And it's the death of a dream and it's the start of a new journey. Disability can happen in the blink of an eye on a country road. It can happen through the onset of aging. The importance of the NDIS to every Australian, is any Australian may one day need it, so let's make sure it does the right job, which is individual packages of modest support to provide people choice and control over their own lives. If you trust families and people with disability with scarce taxpayer dollars, they will make that stretch a lot further than Mr Morrison's bureaucratic red tape agencies.
JOURNALIST: Is there anything else you’d like to add?
SHORTEN: No, but I'm sure we'd love to see what Emma has to say.
EMMA MCBRIDE, MEMBER FOR DOBELL: I’m Emma McBride, the Member for Dobell, and I'm very pleased to welcome Bill Shorten, the Shadow spokesperson for the National Disability Insurance Scheme, to the Central Coast today. Ten years ago, the NDIS didn’t exist. Now we have the opportunity for almost half a million Australians to be able to get choice and control, to be able to have the necessary support that they need to live contributing lives. But what we're seeing increasingly on the Central Coast is people who are missing out. People like Bev and her son Greg, who are having to battle to get the day-to-day support that he needs. We've had close to 200 people contact my electorate office recently in similar situations to Bev and her son, Greg. Many of them have then had to get disability advocates, who are scarce, to be able to take up the fight in the Administrative Appeals Tribunal, where they're facing expensive lawyers that the Government is employing to rip them off, and this is this is not fair. It is wrong that the most vulnerable people in our community are having to face the Administrative Appeals Tribunal to get the basic and modest supports that they need to be able to live decent and contributing lives.
JOURNALIST: How many people on the Central Coast make use of the NDIS?
MCBRIDE: What we've seen on the Central Coast and what we've seen across Australia is in the last 10 years, we've now seen that 500,000 people are on the NDIS across Australia. We've seen come through my office over - since I was elected, close to 400 people who have contacted me about the NDIS. We know that in communities like the Central Coast, that there are more people living with disabilities than in other parts of Australia. So, it does impact more people on the Central Coast. And what we've seen through COVID is people already in very difficult circumstances finding themselves more vulnerable and through the lack of support, and necessary support that they need.
JOURNALIST: You've mentioned that a few people have come to your office looking for help. Also, from pharmacists we’ve heard in the past, people coming in and just being unable to afford medicine. Do you understand Australians who feel like the health system is letting them down at every turn?
MCBRIDE: As someone who's been a pharmacist for 20 years and worked at the local hospital in Wyong for almost 10 years and worked for most of that time in the adult acute mental inpatient unit, I think our health system is broken. I'm really concerned. It is stretched. Our health system - the frontline workers in our health system, who I hear from every day, they're dedicated. They're capable, they're caring people, but they are under enormous strain. Many of them have told me they've burnt out. Some of them, I know, are having to take leave to be able to just cope with what they've been exposed to through the coronavirus. And what I want to see in Australia is health and disability and carers being treated respectfully, having the dignity and support that they need. Being given the support that every Australian deserves. My father ended up with a disability, he had early onset dementia. Dementia. It’s one of the most common disabilities that impact older Australians. It's not a normal part of aging, so anybody at any time in their life because of an illness or an accident can end up needing the support of our health system and our disability services. So, every Australian deserves to know. to have the peace of mind. that if it happens to them or someone that they love that they'll be okay, that they'll get the care and the necessary support they need. And that's, I think, a society that everyone wants to be a part of.
JOURNALIST: And for residents of the Central Coast who are very just out of reach, you know, the immediate help in terms of hospitals or resources, is there something needs to be done immediately?
MCBRIDE: It is urgent, and this is what I don't understand. Either the Morrison Government don't get it, or they don't care, because the decisions that they make and the priorities that they have suggest that they don't understand. In a community like ours, where one in five people are aged over 65, where we've got young families and older people who need the most - it's a time of your life when you're most likely to need health or disability support, and in our community, they're not available. People are waiting weeks for routine appointments. I spoke to a woman on the weekend, 46, a survivor of ovarian and uterine cancer has been told she needs a PET scan. She can't afford it, and she can't afford to go and see her gynaecologist to get the necessary review. She's a mother of four living on the Central Coast. How can someone in a wealthy country like Australia be left crying on her doorstep because she can't afford to get the PET scan that she needs, to know that she's okay? It is urgent, and the Morrison Government needs to act. Thank you.