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Source: ABC Television's Four Corners [Quentin McDermott]
Australian Broadcasting Corporation
FOUR CORNERS
Investigative TV journalism at its best.
TRANSCRIPT
Program Transcript
Reporter: Quentin McDermott
Date: 12/05/2008
QUENTIN MCDERMOTT: Imagine what it would be like if your life was in someone else’s hands. Then imagine if you had to give up your life to care for someone else.
JACKIE MCRAE, CARER: Sometimes I feel really strong and I could take on the world and other times I just feel battle weary.
QUENTIN MCDERMOTT: Australia’s 2.6-million family carers are among the most disadvantaged members of our society. Many struggle to survive on handouts from Commonwealth and State governments. They do it for love and not for any reward.
JOAN HUGHES, CARERS AUSTRALIA: If these family carers gave up what they do and that had to be replaced with formal care services, that’s equivalent to nearly $31-billion each year.
QUENTIN MCDERMOTT: More than 800,000 Australians with a severe or profound disability are cared for at home. Some carers, driven to breaking point by a lack of support, are resorting to acts of desperation.
SHARON GUEST, CARER: (Crying) We said we won’t pick her up from hospital and we visited her every day and I wanted to take her home and I couldn’t because we couldn’t go on.
QUENTIN MCDERMOTT: Now many carers are stepping out of the home and into the political arena.
CATHERINE MURRAY, CARER (at community Cabinet meeting): I think I’ve saved a lot of money to Governments over 24 years.
KEVIN RUDD (at community Cabinet meeting): You know something? You’re absolutely right. You save the state a bucket-load of money. That’s just the truth of it.
BRONWYN MORKHAM, YOUNG PEOPLE IN NURSING HOMES ALLIANCE: Until the Commonwealth and the States will commit the funding that we need we’re just going to remain marking time and more people’s lives are going to be affected, more people’s lives unfortunately are going to be lost because they can’t get the care they need.
QUENTIN MCDERMOTT: Tonight on "Four Corners", on the eve of Labor’s first BUDGET, will the Government give carers the recognition they deserve? And do politicians understand what it means to be a carer?
(On screen text: "IN MY SHOES"; "Reporter: Quentin McDermott")
The images may be blurred, but the memories endure.
(Excerpt from wedding video):
CELEBRANT: Will you take Todd Andrew McRae to be your lawful wedded husband?
(End of excerpt)
QUENTIN MCDERMOTT: Eight years ago Jackie and Todd McRae tied the knot.
(Excerpt continued):
CELEBRANT: In sickness and in health ...
(End of excerpt)
QUENTIN MCDERMOTT: Their wedding was happy and emotional.
(Excerpt continued):
(Applause as bride and groom kiss)
TODD MCRAE (at reception): Yeah, we've got tickets on ourselves!
WOMAN: When is she going to dance on the table?
TODD MCRAE: Which is what she did last time!
(Bride and groom waltz)
Music: I wanna tell you, just how much, I love you ...
(End of excerpt)
QUENTIN MCDERMOTT: In 2005 when "Four Corners" first reported the plight of family carers, our cameras captured a very different scene, demonstrating that by birth or marriage, the role of a carer can be set for life.
JACKIE MCRAE, CARER (to Todd McRae): Good morning, hey Todd, good morning sweetheart.
QUENTIN MCDERMOTT: By then, tragically, Jackie McRae had become her husband Todd’s carer.
JACKIE MCRAE, CARER: It was only 18 months before this accident happened to Todd that we’d been married.
QUENTIN MCDERMOTT (to Jackie McRae): And you had great plans for the future.
JACKIE MCRAE, CARER: Yes. Todd was a couple of years into a horticulture apprenticeship and he absolutely loved it.
JACKIE MCRAE, CARER (to Todd McRae, moving his chair): I'm just going to spin you around for a sec.
QUENTIN MCDERMOTT: In May 2002 Todd McRae had had an extreme asthma attack.
JACKIE MCRAE, CARER (to Todd McRae, moving him in his chair): I'll just see if I can straighten you up a bit.
QUENTIN MCDERMOTT: It left him with an acquired brain injury from which he will never fully recover.
JACKIE MCRAE, CARER (to Todd McRae): A bit straighter?
JACKIE MCRAE, CARER: His mind is still possibly aware and, of everything that’s going on, but he can’t coordinate his body to do the things that he used to be able to do. So he can’t eat substantially, he can’t speak, he can’t move.
JACKIE MCRAE, CARER (to Todd McRae): I'm just going to lift you up a little bit. All right? There we go.
JACKIE MCRAE, CARER: I miss him so much, the person that he was before.
QUENTIN MCDERMOTT: In 2005 Todd McRae was in a nursing home for the elderly in New South Wales, surrounded by residents many years older than him.
JACKIE MCRAE, CARER (to Todd McRae, pushing his wheelchair): All right, let's go.
QUENTIN MCDERMOTT: Jackie McRae wanted to bring him home. She was afraid he wouldn’t survive a long stay in an aged care facility.
JACKIE MCRAE, CARER (to Todd McRae, closing van door): Okay, we're going home now.
JACKIE MCRAE, CARER: He would get worse. He would deteriorate and he would - he would die.
QUENTIN MCDERMOTT: But she needed support. When she applied to New South Wales for funded care support at home she was told her husband didn’t fit the criteria because he wasn’t able to direct the carers himself.
JACKIE MCRAE, CARER (to Todd McRae): Okay, I'm just going to straighten you up again a little bit...
QUENTIN MCDERMOTT: Todd’s care in the nursing home was federally funded and so long as he was there, Jackie McRae didn’t qualify for carer benefits.
JACKIE MCRAE, CARER: Todd doesn’t cost the State any money because he’s not able to access any services that are provided by the State because he’s in the Federal system.
JACKIE MCRAE, CARER (to Todd McRae): Can I just lift your head up?
QUENTIN MCDERMOTT (to Jackie McRae): Do you get a carer’s payment or a carer’s allowance?
JACKIE MCRAE, CARER: Oh no, no. No. With Centrelink I’m not classed as a carer. The nursing home is Todd’s carer.
QUENTIN MCDERMOTT: So in February 2005, distressed by what she saw as buck-passing between Commonwealth and State departments, Jackie McRae spoke up for her husband at a Federal Senate committee inquiry into aged care.
(Excerpt from Senate inquiry):
JACKIE MCRAE, CARER: I think that Todd deserves to be at home. I want to look after him, he wants to be there, and it’s very difficult trying to work out a system where you just don’t fit in anywhere.
SENATOR: Thank you Mrs McRae for your submission. It’s yet another pretty awful story to be quite frank...
(End of excerpt)
QUENTIN MCDERMOTT: Jackie McRae was one of the carers who influenced the Senators to recommend a complete overhaul of the practice of accommodating young people in nursing homes.
State Governments are now working to find ways of moving severely disabled residents under 50 out of nursing homes like this one where Todd McRae was cared for, but it’s a long, slow process.
BRONWYN MORKHAM, YOUNG PEOPLE IN NURSING HOMES ALLIANCE: We’ve got six-and-a-half-thousand young people living in nursing homes that we know of. Many, many more in the community hanging on, trying to avoid going into a nursing home, but we simply don’t know how many there are.
QUENTIN MCDERMOTT (to Bronwyn Morkham): Why does the situation exist?
BRONWYN MORKHAM, YOUNG PEOPLE IN NURSING HOMES ALLIANCE: The situation exists because we in Australia are very lucky. We have access to world class medical technologies that save lives that once would not have been saved, but leave people with significant acquired disabilities after accidents; people are diagnosed with degenerative diseases, also living longer with a better quality of life but needing more care as they age.
So we have a huge problem in this country of growing numbers of young people with disability who need lifetime care and support.
QUENTIN MCDERMOTT: This year "Four Corners" went back to see Todd and Jackie McRae.
After Jackie McRae’s long battle, her husband Todd had at last been given a high needs package funded by New South Wales. But some of the equipment he needs was funded by friends and charity.
Todd now lives at home, and Jackie gets 35 hours of help a week from professional carers. As a full time family carer Jackie McRae now gets the carer bonus, carer payment and carer allowance.
JACKIE MCRAE, CARER (showing photographs to Todd McRae): There's you with Jed, some niche waves there aren't there?
QUENTIN MCDERMOTT: They help with her day-to-day living expenses but she’s still in debt and she’s doing it tough.
JACKIE MCRAE, CARER: Sometimes I feel really strong and I could take on the world and other times I just feel battle weary, that this whole caring environment which has been happening for nearly six years is taking its toll, and I know that I can’t do it forever. In fact I’m reaching the end of my rope at the moment.
JANETTE DODD, CARER (to son, Stevie): Can you get the torch, Stevie?
QUENTIN MCDERMOTT: Around Australia, more and more scenes like this take place every day.
JANETTE DODD, CARER (to Stevie, shining torch into Harley's ear): That looks a bit better.
STEVIE (to his mother): Yeah.
QUENTIN MCDERMOTT: Families looking after profoundly disabled children who will need to be cared for, for the rest of their lives.
Janette Dodd and her young son Stevie live south of Perth with Janette’s eldest son Harley. The two boys have different fathers, both of whom live elsewhere.
Harley was born with severe brain damage and a host of other medical problems.
JANETTE DODD, CARER (to Harley, applying bandage): Turn your head around. That's a good boy.
QUENTIN MCDERMOTT: He’s just turned 18 and he’s helpless without the care his mother and his 11-year-old brother give him.
JANETTE DODD, CARER (to Harley): There you go.
JANETTE DODD, CARER: He can’t walk, he can’t talk. The disabilities are quite overwhelming but they’re not really much compared to the medical, you know the health problems, the issues of seizures, chest infections, pressure sores. You know all the medical things around the disability are the things that are the overwhelming care demands.
QUENTIN MCDERMOTT (to Janette Dodd): How much care does he need?
JANETTE DODD, CARER: Twenty-four hours a day.
QUENTIN MCDERMOTT: In the Dodd household it’s a constant team effort by Janette, Stevie and the professional carers who also come in to help out.
Stevie sometimes makes his brother’s bed and he’s also proficient at helping Harley with his nebuliser. It’s a caring role he clearly takes in his stride.
STEVIE DODD, HARLEY'S BROTHER: It’s a normal life just with a couple of twists and turns involved.
QUENTIN MCDERMOTT (to Stevie Dodd): So what are the good things?
STEVIE DODD, HARLEY'S BROTHER: Um, staying up late is a big one (laughs). Yeah, there’s a lot of good things like I still have a brother that’s really chirpy and happy, and a lot of brothers fight and stuff so I guess that’s a plus. There’s a lot of good things about it.
QUENTIN MCDERMOTT (to Stevie Dodd): So you’re happy you’re here with him?
STEVIE DODD, HARLEY'S BROTHER: Yeah, I am.
QUENTIN MCDERMOTT: The extent of Harley’s problems means that his home is also a medical unit, complete with hospital bed and a hoist which allows his carers to lift him out of bed and take him next door for bathing.
QUENTIN MCDERMOTT (to Janette Dodd): Who paid for all the equipment that you have here?
JANETTE DODD, CARER: Some of it is lent to me by the hospital. Other bits and pieces have been provided by service clubs, Rotary, people like that.
QUENTIN MCDERMOTT: Like many carers, Janette Dodd depends on a range of different funding sources - Federal, State and charitable.
Her part-time job as a teacher’s assistant pays her $250 a week and as a result her means-tested carer payment is cut by $63 a week. Even with Harley’s disability support pension of $340 a fortnight, they’re struggling.
Janette Dodd must find at least $130 a month to stock the home pharmacy.
JANETTE DODD, CARER (at medicine cabinet): These are anti-convulsants, that section there. These are nebuliser drugs like Atrovent, Ventolin for clearing the airwaves; we’ve got saline nebs there.
QUENTIN MCDERMOTT: Feeding Harley is also an expensive business. He needs a special liquid feed called Jevity. Because he is now 18, the handling of the product has been transferred from Fremantle Hospital to the State’s Disability Services Commission and the price has more than doubled.
JANETTE DODD, CARER: Okay, I use four cans of these a day, and a monthly cost on that is now $113, so when Harley turned 18 it went from $54 to $113.
QUENTIN MCDERMOTT: Most shocking of all, the cost of Harley’s nappies has soared tenfold.
JANETTE DODD, CARER: When they turn 16, 18, all of a sudden there’s a big gap in what services and subsidies they can get. So when he turned 16 we lost our nappy subsidy which was, I think we paid $20 a month for a carton of nappies and that got us through the month. Now it’s costing $200 a month minimum.
QUENTIN MCDERMOTT: Janette Dodd is one of a growing number of carers who aren’t prepared to take things lying down. Last year she went public on ABC radio after complaining to the State Premier.
(Excerpt from radio interview, ABC Radio Perth):
GEOFF HUTCHISON, PRESENTER: It’s just dawning on me of course the reality is that this boy of yours as a man will still be wearing nappies.
JANETTE DODD, CARER: Yes, absolutely. And nappies are, you know, very expensive and I think that’s something that, you know, politicians need to realise just exactly what we are doing.
GEOFF HUTCHISON, PRESENTER: Okay.
JANETTE DODD, CARER: They don’t seem to understand that.
(End of excerpt)
CATHERINE MURRAY, CARER (at Bennelong protest): I live in fear that if anything happens to me, who will care for my son?
QUENTIN MCDERMOTT: Catherine Murray is another carer to take up the cudgels. Last September she joined other family carers in Sydney protesting at John Howard’s electoral offices. It would be the first of her appeals to two Prime Ministers.
CATHERINE MURRAY, CARER (at Bennelong protest): My husband had a stroke four years ago and you feel very mortal when things like that happen to your family.
QUENTIN MCDERMOTT: Catherine Murray lives in the Blue Mountains outside Sydney where she cares for her profoundly disabled son, Jonathan.
Here too the home is set up like a hospital, complete with a hoist to lift Jonathan into his wheelchair. It’s a big job for a small woman.
CATHERINE MURRAY, CARER (to Jonathon): Come on, nearly there.
(Jonathon responds)
CATHERINE MURRAY, CARER: I’m five foot tall, he’s about five foot seven or eight and it’s hard. I work really, really hard to stay fit. I swim about seven or eight kilometres a week and I do that purely to maintain fitness. If I didn’t do that I wouldn’t be able to do the job that’s required of me.
QUENTIN MCDERMOTT: Like Janette Dodd’s son Harley, Jonathan Murray suffers from cerebral palsy and epilepsy.
CATHERINE MURRAY, CARER: There’s been some horrendous seizures over the years so epilepsy has taken a toll and the sad part is also just the sheer growth of the body takes its toll. When a child has cerebral palsy their muscles aren’t very strong and their bodies start to twist and deform and that’s a very painful decline. His hips are painful, his back is painful and that’s, you know, more than a mother can bear.
QUENTIN MCDERMOTT: Catherine Murray has professional carers who come in for two hours a day to help her get Jonathan lifted, changed, toileted and showered, but more often than not when a crisis comes she’s on her own.
CATHERINE MURRAY, CARER: For example Good Friday he had a stomach upset and he vomited 18, 19 times that day just non-stop. And of course that’s important because it’s a Herculean effort to keep changing, lifting, changing the bed around him, changing his clothing, washing 18 sets of sheets. The sheer physical effort of changing a bed time after time after time after time after time, is a huge demand and you can keep that up for a little while but when that’s been going on for 24 and a half years, that’s where it’s a big ask.
QUENTIN MCDERMOTT: The one thing family carers say they need more than anything else is respite - a break from the huge demands placed on them by their loved ones. But long waiting times, blocked beds and a shortage of State-run respite facilities means that for some carers, a decent break is virtually impossible to come by.
Catherine Murray has fought hard to get two days off every two to three weeks. That time is more precious than anything.
CATHERINE MURRAY, CARER: I go swimming, I go to see a movie, I tidy the house. You know, I potter in the garden, you know, I knit, I go and see friends. You know, you try and do things that you could normally do that you can’t do when you’ve got a child like mine.
QUENTIN MCDERMOTT: Janette Dodd also has the help of professional carers who come in six nights a week to look after Harley.
But that doesn’t mean she gets uninterrupted sleep. Night-times can be disrupted by Harley’s frequent epileptic seizures.
Caring for him round the clock, day in, day out, leaves his mother in desperate need of respite.
QUENTIN MCDERMOTT (to Janette Dodd): How much respite do you get?
JANETTE DODD, CARER: None. There’s no respite facility at all for Harley once he turned 18. Prior to turning 18 there was a couple of respite options available, but that’s another thing that sort of, there was a big gap when he turned 18 - no respite, no out of home respite.
STEVIE DODD, HARLEY'S BROTHER: She gets a lot of sleepless nights and it’s not a lot of fun for her especially at night time because I’m not normally doing night time jobs, she is, and she’s always sleeping through the day the next day and it’s not a lot of fun for her, but.
QUENTIN MCDERMOTT (to Stevie Dodd): Do you worry about her?
STEVIE DODD, HARLEY'S BROTHER: Yeah, I do.
(Excerpt from home video):
(Small girl walking through revolving door)
WOMAN: Finally out, she's playing with Lachlan, her little buddy in crime ...
(End of excerpt)
QUENTIN MCDERMOTT: This little girl’s story illustrates the sometimes extreme pressures placed on family carers when they can’t get the help they need to carry on caring for those they love.
(Excerpt continued):
WOMAN: Nine, ten! Come on, let's get the lift Jessie.
(End of excerpt)
QUENTIN MCDERMOTT: Three-and-a-half-years ago Jessie Neal was adopted from China by her new Australian parents, Stuart Neal, a former head of ABC Books, and his partner Sharon Guest. Jessie was 20 months old and apparently perfectly well.
QUENTIN MCDERMOTT (to Sharon Guest): Did you know did you know at the time that she had medical problems?
SHARON GUEST, CARER: No, oh no. We adopted a healthy, normal little girl.
(Excerpt from home video):
MAN: Watch out, you'll catch ring worm! Stop it! (laughter)
(End of excerpt)
QUENTIN MCDERMOTT: But from the age of three, back in the family home in Sydney, a range of medical problems surfaced, among them a hearing impairment and an intellectual disability.
(Home video footage showing Jessie blowing out candles on cake, people singing Happy Birthday.)
Then Jessie’s doctor told her parents that she had an extremely rare and fatal condition known as Sanfilippo Syndrome.
SHARON GUEST, CARER: (Crying) He basically said that she would die when she was 12 years of age, but she would die in a horrible way, that her brain would break down, sorry, that her brain would break down and that everything would go, that she would go possibly blind like the brain wouldn’t see. And he said that she would eventually choke on her own saliva and not know whether to swallow or to breathe. And she’d already had choking sort of episodes. And it was just a horror story and we were just, I think just devastated, devastated because we loved her so, we loved her so much. And I’d wanted a child for so long.
(Home video footage showing Jessie struggling and screaming at bedtime.)
QUENTIN MCDERMOTT: Jessie’s doctor had also warned her parents that she would become harder to control at night.
SHARON GUEST, CARER: She had a sleep disorder. She’d had that for a long time but he basically said that would get worse and that she would get hyperactive and that she’d have behavioural problems, but she would lose everything.
(Video continues)
QUENTIN MCDERMOTT: As this video filmed by Jessie’s parents Sharon and Stuart reveals, her night-time antics became virtually uncontrollable.
SHARON GUEST, CARER: It was just horrendous, you’re like in a war zone. She began to wake up in the middle of the night and we couldn’t get her back to sleep. And Jessie was always quite a passive little child but she became like this manic disco dancer in the middle of, like 2.30 in the morning.
You go through your work day exhausted and then you come back to face it again and it’s just untenable.
(Video continues, Jessie screaming.)
QUENTIN MCDERMOTT: After months of sleepless nights, Jessie Neal’s parents were desperate for a break. They turned for help to the Commonwealth-run organisation Carers Respite.
SHARON GUEST, CARER: They were good actually, Carers Respite. They’re an emergency unit, they immediately kicked in and organised us a weekend sort of respite that very weekend.
QUENTIN MCDERMOTT: Jessie’s parents wanted to place their daughter in long-term out of home care but say they were told by New South Wales Department of Ageing, Disability and Home Care - DADHC - that there was nothing available for children under 12.
SHARON GUEST, CARER: And DADHC’s response was, we can’t offer you anything because Jessie’s under 12. And of course Jessie will be dead by the time she’s 12 so this out of home rule for children under 12, I mean, it’s never going to help us.
QUENTIN MCDERMOTT (to Kristina Keneally): Isn’t the truth that you have a policy of not providing out of home care for children under 12, and isn’t that policy entirely inflexible?
KRISTINA KENEALLY, DISABILITY SERVICES MINISTER, NEW SOUTH WALES: What we have is an approach that says that children are best supported in their family when they are very young in their family home, and if that is not possible, if we can facilitate it to be provided in a foster family situation.
We would always prefer to have a child cared for in a family setting, their own family and where that’s not possible, a foster’s care setting. For children under seven, absolutely essential that they’re in those circumstances.
QUENTIN MCDERMOTT: The parents say the only alternative offered by DADHC to keeping Jessie at home was to give her up all together and hand her over to another department, DoCS - the Department of Community Services.
SHARON GUEST, CARER: The only thing we can do is get you reported to DoCS, or do you want us to report you to DoCS? And that was what they could offer us, that was it.
(Excerpt from home video):
SHARON GUEST, CARER: So we've just got to get dressed Jessie, we'll just get dressed. Come on baby, we're just going to get dressed, come on...
(Jessie crying)
(End of excerpt)
QUENTIN MCDERMOTT: By last December, Jessie’s parents were in despair. As she underwent a sleep study in hospital, they made a heart-rending decision.
SHARON GUEST, CARER: (Crying) Stuart said, well so we just not pick our child up from hospital? And, um, and so we said we won’t pick her up from hospital, and we visited her every day and I wanted to take her home and I couldn’t because we couldn’t go on. We couldn’t, we couldn’t, we couldn’t go on without the help.
QUENTIN MCDERMOTT: Jessie Neal was now in the hands of the Department of Community Services. Inexplicably, from her parents’ point of view, she was sent to a home in Newcastle - 170 kilometres away from her family home in Sydney.
Jessie’s parents now have to ask permission to see their own daughter.
That though, is not the most shocking aspect of Jessie Neal’s care in the hands of the State.
This video filmed by Jessie’s parents on New Year’s Eve during a trip home from Newcastle shows their daughter heavily sedated.
(Excerpt from home video showing Jessie falling forward)
SHARON GUEST, CARER: Look at this, look, she's just keeling over. She can't even stay up. Look at that.
(End of excerpt)
QUENTIN MCDERMOTT: The medication she had been given is an anti-psychotic drug, Risperidone. Jessie’s parents say they discovered that their five-year-old daughter was given an adult dose without their permission.
SHARON GUEST, CARER: Jessie was dribbling at the mouth, she couldn’t get her head up, she was shaking, she couldn’t stand up, she was crying. Someone said she looked like she’d had a stroke. It’s been put to me by a psychologist when I told her what Jessie was actually on, she put her head in her hands and she said that’s an adult dose for a little five-and-half-year old. You know, that’s outrageous.
QUENTIN MCDERMOTT (to Kristina Keneally): She was prescribed an adult dose, an adult dose of a very heavy sedative for a five-and-a-half-year-old girl. That’s completely wrong isn’t it? That shouldn’t have happened.
KRISTINA KENEALLY, DISABILITY SERVICES MINISTER, NEW SOUTH WALES: Well in fact that didn’t happen. The advice I have that she was not prescribed a dose that was not in keeping with a child her age.
QUENTIN MCDERMOTT (to Kristina Keneally): Well she was prescribed a dose which resulted in her exhibiting almost zombie like behaviour - falling over, dribbling from the mouth. That can’t be right can it?
KRISTINA KENEALLY, DISABILITY SERVICES MINISTER, NEW SOUTH WALES: Again the advice I have is that while she’s under the care of DoCS, she has been prescribed medication by doctors at Sydney Children’s Hospital. I understand that DoCS has spoken with her parents and is speaking with doctors at Sydney Children’s Hospital about her future medication needs.
STUART NEAL (to Jessie Neal, playing ball with her parents and sibling): Come on Jessie, get it down ...
QUENTIN MCDERMOTT: Jessie Neal is still being given the medication - although at a much lower dose than before. She goes home for weekends but she’s still in the care of the Department of Community Services.
Despite New South Wales’ protestations that it is doing all it can for Jessie Neal and her family, the Federal Government takes a different view of what occurred in her case.
QUENTIN MCDERMOTT (to Jenny Macklin): Her father Stuart Neal and her mother Sharon Guest were driven to their wits end trying to find respite. They couldn’t find it and eventually they abandoned her in a hospital and she was then, her care was taken over by DoCS.
That’s a completely unacceptable situation isn’t it?
JENNY MACKLIN, FAMILIES MINISTER: It is totally unacceptable that there aren’t enough places for those children to live in or to have longer periods of respite so that parents can cope.
So we do need more of those respite places, particularly for the more seriously disabled.
KRISTINA KENEALLY, DISABILITY SERVICES MINISTER, NEW SOUTH WALES: In fact I think what we need to do is provide more respite, particularly more in-home respite and more intensive family support. Every child deserves to have a family and for Jessie that’s what we want to do, is to never give up hope that she’ll be able to come home and live with her family with support from both the Department of Ageing and Disability and Home Care and DoCS.
CATHERINE MURRAY, CARER: They need to look outside the square to innovative solutions rather than just living at home or dumped, and at this stage that’s the only alternative there is. It’s living at home or dumped. And I find that unconscionable.
(Excerpt from community Cabinet meeting):
KEVIN RUDD, PRIME MINISTER: The lady second row back, fourth from the aisle, that’s you.
CATHERINE MURRAY, CARER: My name is Catherine Murray, I’m from the Blue Mountains...
(End of excerpt)
QUENTIN MCDERMOTT: At a community Cabinet meeting in western Sydney last month, Catherine Murray took her message to a second Prime Minister.
(Excerpt continued):
CATHERINE MURRAY, CARER: I really, really object, I find it unconscionable that I would have to surrender my child, abandon him in the hospital, if it all got too much for me. I work so hard to stay well, to stay really, really well, but cradle to grave is a big ask, a really, really big ask.
I think I’ve saved a lot of money for governments over 24 years. I struggle to hang on to my dignity because I object to begging. I really do object to begging.
And as I say I pray God I stay well, but if anything happened to me, where would my son go? That’s what keeps me awake at three o’clock in the morning. Thank you.
KEVIN RUDD, PRIME MINISTER: Thank you very much.
(Applause)
I think that’s one of the most eloquent presentations that we’ve had. It’s a tribute to you. And you know something? You’re absolutely right, you save the state a bucket-load of money. That’s just the truth of it.
(End of excerpt)
QUENTIN MCDERMOTT: Following this meeting the Prime Minister announced extra funding for the disabled, directly citing Catherine Murray’s contribution.
KEVIN RUDD, PRIME MINISTER (at Labor party conference): Hers was a moving account. She spoke about the fear that so many older carers have across the country, a concern for what happens to their disabled children once they are no longer able to provide the support that they have offered through a lifetime.
We do not pretend to have a total solution to this problem but it’s time we began to turn the corner. We will commit a further $100-million in the BUDGET in immediate new capital funding for supported accommodation for people with a disability.
(Applause)
QUENTIN MCDERMOTT (to Jenny Macklin): That’s just a drop in the bucket isn’t it?
JENNY MACKLIN, FAMILIES MINISTER: It really is just a first step, we recognise that, but it’s a $100-million more than was available last week. What we’re also providing is $900-million into the Commonwealth State Territory Disability Agreement, so it’s about a billion dollars extra that’s going into services for people with a disability that will make a difference to carers.
QUENTIN MCDERMOTT (to Jenny Macklin): That’s not an annual commitment though is it?
JENNY MACKLIN, FAMILIES MINISTER: No it’s not an annual commitment, that’s over five years.
QUENTIN MCDERMOTT: On the eve of Labor’s first BUDGET, the economic agenda is focused on cuts, cuts and more cuts.
(Excerpt from news report, March 7 2008):
REPORTER: Budget leaks suggest the Government plans to scrap the bonuses, and no-one’s denying it.
NICOLA ROXON, FEDERAL MINISTER FOR HEALTH AND AGEING: It’s really not appropriate for me to comment on this sort of speculation.
(End of excerpt)
QUENTIN MCDERMOTT: Two months ago the new Rudd Government was reported to be about to cut the carers’ annual bonus of up to $1,600. It took five days for Mr Rudd to confirm that the carer bonus would stay.
JOAN HUGHES, CARERS AUSTRALIA: I’ve never seen the community mobilise as much as what they did and our phone lines were jammed with people, not only carers saying they can’t do that to us, but with the Australian community saying you don’t disadvantage these people even more, don’t touch them. You can’t trade on this sort of thing, be very, very careful Mr Rudd.
QUENTIN MCDERMOTT: Families Minister Jenny Macklin now denies that the cut was even considered.
QUENTIN MCDERMOTT (to Jenny Macklin): How could you possibly have contemplated cutting the carer bonus?
JENNY MACKLIN, FAMILIES MINISTER: We didn’t. In fact what we’re doing is making sure the carer bonus is paid and it will be paid before the end of this financial year, so before the end of June carers will get their bonuses, and they deserve them.
QUENTIN MCDERMOTT (to Jenny Macklin): You did contemplate cutting it though didn’t you?
JENNY MACKLIN, FAMILIES MINISTER: No we didn’t.
QUENTIN MCDERMOTT: For most carers, the carer bonus isn’t a luxury - it’s a vital contribution to the household BUDGET.
Tansy Mayhew is a sole parent who lives on her own with her five-year-old, multiply disabled daughter.
TANSY MAYHEW, CARER: Chanté is a complex little bubby. She is one out of the box.
(to Chanté, helping her with exercise): Here we go, up, up, up, up.
She was born with Peter’s eye anomaly, went basically blind. She has epilepsy, she has had a heart condition. She’s had 16 surgeries since she was born. She doesn’t speak, she doesn’t walk, she doesn’t sit up by herself.
But she’s slowly learning to develop her muscle development and she’s infinitely better than what she was when she was born.
(singing to Chanté and playing with her): Row, row, row your boat, gently down the stream...
QUENTIN MCDERMOTT: Tansy Mayhew, an up and coming jazz singer, has willingly put her career, income, independence and social life on hold to devote herself to Chanté's care.
TANSY MAYHEW, CARER: I can’t even remember what my life was like before Chanté, it’s that different. I had no responsibilities before I had Chanté.
QUENTIN MCDERMOTT: Tansy Mayhew gets the carer payment and carer allowance, but it isn’t enough to allow her to make big purchases, and there her annual carer bonus of a thousand dollars has made a real difference.
TANSY MAYHEW, CARER: Chanté has a long history of vomiting and getting infections and every day I have to wash all of her bedding. I was hand-washing till one o’clock in the morning.
QUENTIN MCDERMOTT (to Tansy Mayhew): What have you used the carers bonus for?
TANSY MAYHEW, CARER: I used it to get the washing machine and also to get a couch, and it was really amazing because during the year you just don’t have time on the pension to save up for necessities like this.
QUENTIN MCDERMOTT (to Tansy Mayhew): So it’s not really a bonus, it’s essential.
TANSY MAYHEW, CARER: Yeah it is, I really think it is.
QUENTIN MCDERMOTT: Many carers are in debt, even after getting the carer bonus, carer payment and carer allowance.
JOAN HUGHES, CARERS AUSTRALIA: We know that many family carers spiral into poverty because once you are reliant on Centrelink payments that actually does not equate to the cost of care. So the small amount of whether it’s a carer allowance or a carer bonus, although welcomed in families, they’re still living $200 below the Federal minimum wage.
QUENTIN MCDERMOTT (to Jenny Macklin): Will you guarantee that the carer bonus will be preserved for the life of this Government?
JENNY MACKLIN, FAMILIES MINISTER: What we’ve said to carers is that first of all the bonus this year will be paid before the end of this financial year, so that extra money will be in their pockets very shortly.
What we’ve also said is we want to put the bonuses onto a much firmer footing so you’ll have to wait for the Budget to see what we have to say about that, but we do understand that carers don’t want to be in this position every year of not necessarily knowing exactly what’s going to happen.
QUENTIN MCDERMOTT: When "Four Corners" went inside the homes of these four family carers three years ago, their stories struck a chord with thousands of other carers around the country - part of a vast hidden army of women, children and men who devote their lives to caring for their loved ones.
CATHERINE MURRAY, CARER: When "The Hidden Army" was broadcast that started a groundswell. That started the groundswell of the little drums beating and people starting to email and network and a friend to a friend to a friend.
JEAN TOPS, NATIONAL CARERS COALITION: What we saw then was an outpouring from people right across Australia saying, look we all agree with everything that’s been said on this program. We should join together and we should do something.
And so then there were a couple of people who came up with the idea of, well yes you know, we should be asking politicians to walk a mile in our shoes.
QUENTIN MCDERMOTT: Jean Tops, whose daughter Moya is multiply disabled, is a leading voice in the grassroots National Carers Coalition. It wants families to have an equal say with others in the caring profession.
JEAN TOPS, NATIONAL CARERS COALITION: We want the ability to sit at the policy and planning table along with those other people as equal partners.
JEAN TOPS, NATIONAL CARERS COALITION (to Moya, daughter): Can I have a look at that pretty bangle that you made?
QUENTIN MCDERMOTT: She is one of many carers who are lobbying to change the way services for the disabled are funded.
JEAN TOPS, NATIONAL CARERS COALITION: I want the funding of that system to be equally shared between the Commonwealth and the States on a dollar for dollar basis across the board. No more 80/20 splits, no more arguing over we pay more than you, you pay less than us. We want an across the board 50/50 split. If that can’t happen, we want the Commonwealth Government to assume responsibility for all accommodation and support services entirely so that the blame game stops.
JENNY MACKLIN, FAMILIES MINISTER: The community just is sick and tired of the blame being shifted from one level of Government to the other so we want a new agreement, we will negotiate a new agreement, and I think the States and Territories really want that too.
There’s a substantial amount of money on the table to make a difference and we have to get away from blaming the other side of Government for things not being right. We’ve both got to take our responsibilities seriously.
QUENTIN MCDERMOTT: The established lobby group Carers Australia has asked the Rudd Government to double the carer allowance, legislate for the carer bonus as an annual payment, and introduce a carers' superannuation scheme.
It wants a national strategy for carers and it sees an historic opportunity for a complete overhaul of the way in which services are funded and delivered.
JOAN HUGHES, CARERS AUSTRALIA: There is not a national carer action plan. We don’t have that in Australia. This is the opportunity because it is the first time that we’ve had Labor Governments in every State and Territory and a Federal Labor Government and we could get this right now for generations of families.
QUENTIN MCDERMOTT (to Jenny Macklin): Why doesn’t this Government have a national strategy for carers?
JENNY MACKLIN, FAMILIES MINISTER: We in fact are developing exactly down that path. We think that there needs to be a wide ranging view about what needs to be done with and to support carers, and those who are being cared for.
QUENTIN MCDERMOTT: In recent weeks a flurry of activity at ministerial level has resulted in several pre-Budget announcements on the subject of carers - the latest being the promise that more parents of profoundly disabled children will be eligible for income support through the carer payment.
Among those watching the Budget closely this week will be Jackie McRae. After fighting so hard to get her husband home, she now wants to find a suitable support setting where Todd can live and have all of his needs met. Failing this, she may find herself back at square one.
BRONWYN MORKHAM, YOUNG PEOPLE IN NURSING HOMES ALLIANCE: Jackie certainly doesn’t want Todd to go back to a nursing home because she knows he won’t get the sort of supports he needs to access there, but she really doesn’t have many other options at the moment, so she’s in an invidious position, it’s awful.
QUENTIN MCDERMOTT (to Jackie McRae): Are you changing? Are you at a turning point in your life?
JACKIE MCRAE, CARER: Yes I am. After the last six years of caring for Todd I know that I need some caring for too and Todd needs more than I can provide (crying) so for me to have a life and for Todd to have a good quality of life, something’s got to change.
QUENTIN MCDERMOTT (to Jackie McRae): What do you need?
JACKIE MCRAE, CARER: I need to have this weight lifted off my shoulder, this responsibility which I’m happy to do and I’ve been happy to do, but after having been here I can see that the weight of it is too much.
I need to work, I need to be able to socialise. I’ve forgotten who I am. I don’t like being labelled as a carer because I find that that has connotations attached to it, but I don’t know who else I am. I’ve lost the other part of me.
QUENTIN MCDERMOTT (to Jackie McRae): You’re feeling socially isolated?
JACKIE MCRAE, CARER: Yeah, yeah.
TANSY MAYHEW, CARER (singing in café): ... Gotta feel right, it's got to feel good. And if it makes you happy, don't you do what they say you should. Can’t nobody tell you what to choose, until they walk five miles in your shoes…
QUENTIN MCDERMOTT: Tansy Mayhew has a lifetime of caring ahead of her.
TANSY MAYHEW, CARER: Not everybody’s cut out to be a carer. It’s a huge job, it’s a huge responsibility, taking care of somebody else’s life. You’re responsible for this other person’s complete and utter wellbeing. There is no independence, there’s no autonomy from them. It’s all relying on you.
QUENTIN MCDERMOTT: She chooses to be a full-time carer, but the choices made by Government will help to determine the kind of life she and other carers enjoy.
QUENTIN MCDERMOTT (to Janette Dodd): What would happen if you got sick?
JANETTE DODD, CARER: I don’t even want to go there, Quentin. I don’t want to go there. I can’t afford to go there. I just pray that I don’t get sick, and I don’t.
CATHERINE MURRAY, CARER: People are dying, mothers are dying. Mothers are dying without the confidence that their child who may be in their 30s or 40s is not going to be provided for, and in this day and age that’s a disgrace.
TANSY MAYHEW, CARER (singing in café): ... Can't nobody tell you ... what to choose, until they walk five miles in your shoes.
(Applause)
(End of transcript)
Please note: This transcript is produced by an independent transcription service. The ABC does not warrant the accuracy of the transcript.
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