Mr Allen’s lawyer said he needed an enormous amount of help and encouragement to participate in day programs and organise his life.
ABC Central Victoria: Larissa Romensky
Posted May 23, 2018 15:53:59
Mr Allen’s lawyer said he needed an enormous amount of help and encouragement to participate in day programs and organise his life.
ABC Central Victoria: Larissa Romensky
This service may include material from Agence France-Presse (AFP), APTN, Reuters, AAP, CNN and the BBC World Service which is copyright and cannot be reproduced.
AEST = Australian Eastern Standard Time which is 10 hours ahead of GMT (Greenwich Mean Time)
Posted May 23, 2018 15:53:59
Warick Allen (left) and his long-time carer step-father David Coxon (right) in Warwick’s loungeroom.
ABC Central Victoria: Larissa Romensky
Updated May 21, 2018 21:13:34
About 150 jobs stand to disappear from the community mental health sector when the Federal Government rolls mental health funding into the National Disability Insurance Scheme on July 1.
The Mental Health Coalition of South Australia predicted the first substantial job loss under the new Marshall Liberal Government, and the biggest in the history of the state’s mental health sector.
Executive director Geoff Harris described the job losses as a “tsunami” that had already hit the sector, with the “wipe-out” already commencing.
“When you lose a skilled workforce like this and key programs cease to exist, you put more pressure on an already-overworked system,” he said.
“You put more stress on families and carers, you find people presenting at emergency departments and worst of all, you leave vulnerable people in the community at risk of self-harm and suicide.”
The MHCSA said highly skilled and qualified mental health support workers were being told they will not have a job beyond the financial year as Commonwealth funding will be pulled out of mental health programs.
It is estimated that each of these workers would support about 10-15 people in a mental health program in South Australia — resulting in up to 2,500 left without support.
The cuts are being blamed on the delayed rollout of the NDIS — with the State Government releasing a statement on the issue, but not answering questions on Monday.
The Commonwealth Department of Social Services argued that the uptake of people living with mental illness in to the NDIS was more than 70 per cent — but the Mental Health Coalition data has it around 30-35 per cent.
“These mental health services that are currently funded are really effective in supporting people to stay well in the community and keep out of needing to use emergency and acute care services … so what we will see with a reduction in support for mental health services is more people needing to use already-overcrowded acute and emergency services,” Mr Harris said.
“Organisations are already giving notice to their employees that they don’t have work for them from first of July, so it is critical that this gets addressed soon.”
Mr Harris said the job losses would create a “massive gap” in support for South Australians, with mental illness which would require $8-10 million to fix in the coming financial year.
The Commonwealth Government promised $92.6 million in the federal budget for services to continue supporting people, however the money would be over four years and for all of Australia.
Mr Harris said that would mean less than $2 million a year for South Australia — to replace the $40 million per annum previously invested for mental health programs.
“We keep talking about the tsunami, well it has hit the sector and the wipeout has started,” he said.
“We just need the Commonwealth and the State [Government] to not allow this to happen because it will be a disaster to have that huge reduction in capacity to support people.
“Obviously, people won’t be supported as well as they are now and that is going to have a huge impact on those individuals and their families.”
The MHCSA said it had been contacted by one regional worker who said she managed 20 clients — but only one of them had managed to get in to the NDIS while the other 19 were promised continuity of support — however, there was no program to support them from June 30.
Disability advocate Kelly Vincent said to hear there were more people at risk of being disadvantaged when they are the most in need of services was absolutely appalling.
“This is the kind of stuff that NDIS was meant to fix and both the federal and state government are not willing to step in to ensure that vulnerable people get the services they need,” she said.
“It is very disappointing that the State Government aren’t making themselves available to speak about this issue today, particularly when they are a Government that rose to power criticising the previous government’s inaction on health issues.”
In a statement released by the State Government, Minister for Health and Wellbeing Stephen Wade said the Government was increasingly concerned that the transition to the NDIS was creating gaps in services for South Australians with mental health issues.
Mr Wade urged the Federal Government to work with community mental health service providers to ensure continuity of services.
The Federal Government also released a statement with Social Services Minister Dan Tehan, stating that the Government was committed to providing continuing support for mental health programs.
“No existing client should be left without services as all governments are committed to providing continuity of support for those not eligible for the NDIS,” he said.
“The Commonwealth is providing an additional $92.6 million for Continuity of Support.”
As at December 31, more than 15,000 participants had approved plans in South Australia, however the transition of South Australian clients has been taking longer than originally planned.
The NDIA has said they will consider access for South Australian clients unable to be fully transitioned into the new scheme by June 30.
The group has said planning for state clients will be completed by December 31, with Commonwealth clients on track to have their planning completed by June 30, 2019.
Topics: government-and-politics, politics-and-government, federal—state-issues, federal-government, community-and-society, health, disabilities, health-policy, mental-health, australia, sa, adelaide-5000
First posted May 21, 2018 19:41:48
Posted May 21, 2018 17:00:18
The parents of two boys with disabilities say they have been unable to access basic equipment for their sons due to bureaucratic red tape.
Hobart couple Michael and Jasna Baric are full-time carers for their sons Joshua and Lucas, who have Duchenne Muscular Dystrophy.
The condition means the boys’ muscles are progressively degenerating and becoming weaker.
“The disease is degenerative; it won’t get any better,” Ms Baric said.
‘They’ll physically lose their ability to walk and use their body.
“While you’re watching other kids grow and develop and playing sport, we’re watching ours go the other way,” Michael Baric said.
In February, the Barics applied through the National Disability Insurance Scheme (NDIS) for money to buy their 11-year-old son Joshua a mobility scooter, an adjustable bed and a reclining chair.
They waited three months for a response and were shocked by the “very cold” reply they eventually received.
The email from the NDIS queried the value of investing in an adult-sized adjustable bed for 11-year-old Joshua, saying “it seems it would be unlikely he will need a bed of this height for a very long time, if at all.”
The email also suggested cheaper alternatives to a recliner, like a chair with arm rests or alternative supports including “leg raisers on the family’s existing lounge suite”.
“They wanted me to look for some blocks of wood to stick under the couch so that my son had easier access to get on and off it,” Mr Baric said.
“I just thought to myself, Oh my God.
“I didn’t realise we’d have to walk over 10 kilometres of broken glass just to try and get a couple of things to help.”
While struggling to secure funding for equipment, the Barics have also found it hard to spend NDIS money on speech and other therapies for their children, both of whom also have autism.
“There’s a huge waiting list for the boys to seek professional help at that level,” Mr Baric said.
According to independent MP Andrew Wilkie, this is a common story.
“I would suggest that in Tasmania there are hundreds who are having difficulties. Across the country, there are thousands,” he said.
“They are finding the NDIS a bureaucratic maze that is just too difficult to navigate.
“Last year, the NDIS spent about $10 million fighting legal battles in the courts, people challenging decisions by the NDIS and the NDIS has lost almost of the cases that have been brought against it.”
The Barics said they were seriously considering legal action.
The NDIS was contacted for comment.
Posted May 18, 2018 04:43:23
From dawn until dusk, seven days a week, James Behrendorff requires constant care — the result of a 2011 workplace accident that left the electrician with C5 tetraplegia.
“It means basically from the neck down I’m numb,” Mr Behrendorff said.
“I’m lucky I have some movement in my hands, but I can’t feel half of them.”
Mr Behrendorff needs help to get dressed and to wash, and to be put into a lifter so he can be put in a chair.
“At night, I need my tea cut up. It’s a lot of high-maintenance help,” he said.
Mr Behrendorff gets that help from his wife Virginie and, since 2012, his sister-in-law Sophie Pfaerhoever.
“I wouldn’t be able to cope without my sister Sophie to take care of somebody who requires you … [to] cook, clean, wash, entertain,” Ms Behrendorff said.
“You are on the go 24/7. You can only take that for so long.”
The arrangement has worked well, but it could be about to change.
The family fears that, any day soon, Ms Pfaerhoever could be deported on the grounds that, in the eyes of the Federal Government and Department of Home Affairs, she is not a close relative and does not met visa requirements.
If that happens, Mr Behrendorff said he would inevitably be placed into a home, which is something he steadfastly objects to.
Mr Behrendorff and his wife are desperately seeking a way to allow Sophie to stay in Australia and continue providing care.
Caring for Mr Behrendorff can’t be done by one person alone.
“Even with the lifter it takes two people to get James into bed,” Virginie Behrendorff said.
It’s not a simple life, but it’s the one Sophie Pfaerhoever has chosen for herself, moving from France to be with her sister and her brother-in-law.
“I know it is not easy, but it is my family,” Ms Pfaerhoever said. “When your family have problems you are there.”
All of this care is being given at home on Adelaide’s outskirts.
The sisters don’t qualify for carer benefits, and the family lives on Mr Behrendorff’s WorkCover payment.
Migration consultant, Mark Glazbrook, said the in-home care given to Mr Behrendorff has saved taxpayers a packet.
“The cost of institutional care for James would be in the vicinity of $200,000 a year,” Mr Glazbrook said.
“Sophie’s been here for six years so she has saved the taxpayer at least $1.2 million. In that sense, it is in Australia’s national interest to keep her here.”
But Ms Pfaerhoever’s application for a carer visa was refused because the requirements stipulate the person must be a close relative.
In this case, Ms Pfaerhoever would have to be Mr Behrendorff’s sister, half-sister or step-sister to qualify — sisters-in-law are out.
“I think it is rubbish,” Virginie Behrendorff said.
“Honestly I have been married to James nearly 20 years, he knows Sophie very well. She is part of this family unit.”
Mr Behrendorff said immigration officials have put rules above his care and personal dignity.
“I’ve been through the hospital system, and your dignity is gone. You have one person wash you one day, another person washes you the next day,” he said.
“It gets to a point where you do want some dignity back … and that’s what Sophie helps give me.
“It will strip me of my dignity. This is all about their small rules and nothing about my care.”
The family took the decision to the Administrative Appeals Tribunal (AAT) but it said, effectively, its hands were also tied by the legal requirements making in-laws ineligible for a carer visa.
But the AAT offered one last hope, saying “there are compassionate circumstances in this case … the tribunal considers this case should be referred to the department to be brought to the minister’s attention”.
It opened the possibility of a ministerial intervention, and Mark Glazbrook thought the AAT’s ruling was significant.
“It’s something that doesn’t happen ordinarily, only in very limited, special circumstances, such as in this matter. We thought a successful outcome would have been achieved,” he said.
But last Friday, Mr Glazbrook found out he was wrong.
The department sent him an email saying it had made its own determination, without reference to the minister:
“Ms Pfaerhoever’s request was assessed against the minister’s guidelines and was found not to present the type of unique and exceptional circumstances that may be referred to the minister, and was therefore finalised by the department without referral.”
Mr Glazbrook said the department is not required to give reasons.
“We don’t know if the full case was investigated,” he said.
“Unfortunately now we are in a situation where it may only be a matter of days or weeks before Sophie is deported.”
The ABC asked Assistant Minister Alex Hawke for his view.
In a statement, the Department of Home Affairs said it “does not comment on individual cases”.
“People whose requests for intervention have been unsuccessful and who do not have other matters before the department are expected to depart Australia,” it said.
The clock is now ticking for Ms Pfaerhoever, but it also ticks for her sister and brother-in-law.
“If Sophie goes, I will have to go into a nursing home eventually,” Mr Behrendorff said.
“I honestly wouldn’t want to be around. That’s not a life.”
Updated May 17, 2018 06:39:02
Megan May shoulders more weight than many people her age.
The 19-year-old has cared for her sibling Simon, who has autism, since she was in primary school.
Both of her parents fight their own health issues, so Megan works only casually at a beauty spa and stays home to look after Simon four days a week — often spending hours trying to get him out of bed.
Holding the family together has meant sacrificing a social life and everything else about typical teenage life.
That has taken a toll.
Ms May said it played a part in her history of anxiety, depression and an eating disorder.
“A lot of that stemmed from a lack of self-worth because a lot of my attention was going into other people and I never had time to sit down with myself and say ‘hey I’m actually doing really well’,” she said.
“There’s also a lot of isolation you get when you’re not like your peers.”
The ACT’s peak carers body has recently boosted mental health support, hiring its first counsellor dedicated to young adults.
Ms May welcomes the initiative, saying the transition from childhood to adulthood has been tough.
“You’re just a child with a drinking licence and you’re not sure how to [act like an] adult,” she said.
“You get a lot of respite care and mentoring as a child and a lot of agencies lose that as you get older.
“Some cut-off or change support at 18, others at 24, and a lot of the time it’s not made clear to the carer or family.”
Carers are a high-risk group for mental illness.
But those aged between 15 and 24 are also less likely to have jobs than others their age, with the Australian Institute of Health and Welfare reporting a 57 per cent unemployment rate in 2017.
Only 40 per cent of carers aged 19-24 attend university or TAFE, and they are much more likely to stay on welfare payments than their non-caring peers.
That is why Carers ACT is also offering more financial support.
It is looking to extend its scholarship program, funded by SHAW Building Group.
Carers ACT’s Lisa Kelly has already seen it change the lives of many young carers.
“There’s this look in their eyes that that dream they thought they could never achieve might actually come true,” Ms Kelly said.
It helped one young man restart a trade he was forced to give up when his mother died, while he looked after his father with heart problems.
But Carers ACT only found out about that man’s struggles through the media before offering the scholarship.
Ms Kelly believes many more people would not realise they qualify for the help of up to $5,000 towards tertiary education or apprenticeships.
“We are looking at making sure that any young carer who requires assistance to reach their goals in their life around education and their career is able to get that support.”
Laura Piscopo, 19, cares for her mother with a chronic illness. She says the SHAW scholarship has been lifechanging, allowing her to follow her dreams of working in the disability sector.
“It’s been fantastic because I’ve always wanted to go to university,” she said.
Chantelle Pellegrini has been a key voice in driving change in the recognition of young carers.
The 19-year-old has cared for her mother, who suffers from chronic pain, since she was a young child.
As a teenager she also cared for her father who died of a brain tumour in 2014.
“It all happened when I went into high-school, so caring for mum and dad and trying to keep up good grades, I really struggled mentally,” she said.
“It was extremely difficult. I remember always being confused as to why this all happened to me.”
But Ms Pellegrini pushed through the adversity and has started studying part-time this year — all while working part-time, running the household and looking after her mother.
“It’s tough, but my mum is a big inspiration to me,” Ms Pellegrini said while holding back tears.
“When I was young, people at school would say athletes and celebrities are their role models, but mine has always been Mum.”
“Since getting my job I’ve started saving money to give back to her so she has less pressure, because as a child she gave me everything and I want her to know it’s OK and I can help out now.”
Ms Pellegrini sat on the Carers Voice Panel which helped form a 10-year strategy to better support Canberra’s carers — a partnership between the ACT Government, Carers ACT and democracyCo.
She said Carers ACT’s counselling and scholarships support was a great first step, but there was more to be done.
One initiative she supported was a proposal from Ms May — the youth representative on the strategy’s taskforce — for a mentoring program where older carers help younger ones.
She also wants to see agencies provide more social activities for young adults to help with her feelings of isolation, saying most offer more for children.
“A lot of us give up — it gets too tough,” she said.
“I just hope [the new strategy] helps reduce that, that it helps people look forward in life and achieve great things knowing that their situation doesn’t have to stop them.”
The strategy is on track to being rolling out in the coming months.
Ms Kelly said a big part of the action plan will relate to improving community awareness of carers and just how much they give.
“But it can be as simple as offering to cook dinner if you’re a neighbour,” she said.
“Carers are heroes because they remind us that there are people that give love and compassion so effortlessly without asking for anything in return.”
“They are heroes of hope. And they are heroes that show love and compassion still exist in the world — and sometimes we forget that.”
First posted May 17, 2018 06:28:08
Posted May 16, 2018 05:06:57
People with disabilities are facing delays of up to nine months when they attempt to have their bungled National Disability Insurance Scheme (NDIS) plans fixed, an investigation has found.
The Commonwealth Ombudsman’s report into the NDIS’s plan review system has revealed up to 8,000 people are stuck waiting for an outcome.
People seek reviews for many reasons, including when their plan includes wrong or inadequate equipment and support, for example if they receive funding for fewer hours of care than needed.
The Ombudsman described the review processes as “unwieldy”, “unapproachable”, and lacking “fairness and transparency”.
“[Delays] pose a particular risk to those who may be at risk of losing services or experiencing deterioration in their capacity if their plan is not adjusted quickly,” the report said.
The Ombudsman said it received 400 complaints about the National Disability Insurance Agency’s (NDIA) review processes over the 18 months to January.
“In one case, a participant did not know why her plan was changed because the NDIA had not told her it had accepted (and given effect to) her request for a plan review,” the report said.
Reports to the watchdog included:
More than 140,000 Australians are now covered by the NDIS — a number expected to reach 475,000 by early next decade.
The NDIA has accepted the Ombudsman’s 20 recommendations.
“[The agency] has started determining the most practical way to implement responses,” a spokesman said in a statement.
“The NDIA has established a dedicated team to manage outstanding reviews.
“The NDIS is a world-first reform, the size and scale of which means the scheme will not be without challenges.”
Federal Labor’s social services spokeswoman Jenny Macklin said it was “an absolutely damning report”.
“These problems need to be fixed, and fixed right now,” Ms Macklin said.
“Get peoples’ plans right the first time so we just don’t need all these reviews done, and people waiting for much-needed support.”
Updated May 14, 2018 07:16:57
Caroline Boileau remembers her husband, Nick Ellwood, as the funniest man she’s ever met.
“The first time we met, we laughed for hours, and we pretty much haven’t stopped,” she said.
“So even now we laugh. You have to.”
Mr Ellwood was 51 years old when he was diagnosed with posterior cortical atrophy, a rare form of dementia, in 2011.
Over the next seven years the disease would take almost everything — his sight, the power of speech, even his ability to move.
Ms Boileau, a specialist nurse, now administers dozens of medications for her husband and manages every aspect of his care.
“We feed Nick through a feeding tube in his stomach, called a peg, we wash him head to toe, we have to do his mouthwash every hour because he can’t eat or drink,” she said.
“We have to brush his teeth, we have to shave him, we have to change his underwear.”
Because he is unable to cough, Mr Ellwood is often moments away from choking, so that not even a specialist home could provide the level of care he needs.
Ms Boileau said her family is on constant alert, and she survives on very little sleep.
“I never get more than about three hours in a row … I dream about getting eight hours sleep, I couldn’t tell you the last time that happened,” she said.
Ms Boileau said she has been trying to get home modifications and nursing support through the National Disability Insurance Scheme (NDIS) for 18 months.
She would like a sliding door so she can take her husband outside, a bath so she can wash him properly, and support staff so they can get much-needed rest.
But so far they have been disappointed, and after months of dealing with the new system they are exhausted.
“Some days I can’t even have a conversation with people because I’m just so frustrated and I’m just so tired,” she said.
“I’m sick of hearing this is going to happen, that is going to happen — and it doesn’t happen.”
Ms Boileau said they have had four NDIS case co-ordinators so far and several management plans, but struggled to get information about where their case was up to.
A National Disability Insurance Agency spokesperson said Mr Ellwood’s NDIS management plan had been finalised, and at no stage have he or his family been without NDIS funding.
The NDIA said under the plan, the Ellwood family would be able to access specialist equipment and home modifications — to be installed over the next six months — as well as funding for a nurse who can train a disability support worker to help them.
“The NDIA immediately made further contact with Mr Ellwood’s wife Caroline on hearing her concerns, and has continued to work with the family to address concerns,” the agency told the ABC.
The agency said the size and scale of the NDIS means rolling out the system would not be without challenges.
The burden of caring for Mr Ellwood has also fallen to his oldest son, 19-year-old Max Ellwood, who has spent his teenage years helping to care for his father.
Despite rarely being able to make it to school, the teenager graduated last year, and was accepted into university.
Even now, he misses more than half of his classes, because he is helping care for his father.
“Year 12 was probably the toughest year of my life, I just really struggled getting there every single day,” he said.
Max Ellwood said his father is his best friend, and described the loss he feels watching him gradually lose his cognitive abilities.
“He could say something and then I’ll never hear that again,” he said.
“I think about when was the last time he said my name — I think it would be well over six months.
“Just stuff like that, that I took for granted … it’s really hard not to hear that anymore.”
First posted May 14, 2018 07:10:28
Updated May 09, 2018 15:25:24
Michael Ingram’s short walk has been a long time coming.
For the first time in almost two decades, the central Queensland cattleman walked into the Beef Australia cattle ring witnessed by a crowd of hundreds this morning.
“I’m feeling quite on top of the moon,” an emotional Mr Ingram said immediately after his walk.
“I can’t believe I am here and I can’t believe I am on my feet.”
Eighteen years ago, Mr Ingram fell off his horse while chasing a bull and damaged his brain so badly it paralysed the right half of his body.
And in March, he set himself the goal to walk at Beef 2018, Australia’s largest beef expo being held in Rockhampton this week.
Only eight months ago, Mr Ingram was unable to walk unassisted.
It has taken him countless hours of work in the pool and the gym with the help of local gym owner and coach, Glenn Hansen, to get to this point.
“I had trouble sleeping last night, but it’s good, a lot of weight off my shoulders,” Mr Ingram said of Wednesday morning’s walk.
Flanked by Mr Hansen as he walked into the ring and watched on by his son Blake and carers Vicki and Graham Bell, he made his way towards well-known ring announcer Angus Lane.
“It was quite emotional and something I couldn’t do eight months ago,” Mr Ingram said.
He has now set his sights on walking into the National Droughtmaster Bull Sale in September and eventually, to show his cattle at the next Beef Australia expo in 2021.
Mr Hansen said it was satisfying to see someone set a really outlandish goal and then make a plan to achieve it.
“He’s walked the best I think he’s ever walked since we started the whole thing today, so that’s really good,” Mr Hansen said.
As for Mr Ingram’s next goal, he said he was not sure but said they would give it a go.
“We weren’t sure we could do this, and we did it,” he said.
It’s a far cry from that time immediately after Mr Ingram’s accident when he would like on his back, unable to move, and question his will to live.
“Why has someone made me do this? What have I done to someone?” Mr Ingram said he kept asking himself.
“I had a priest come in and [he] said ‘you want to be thankful because you haven’t died’, but sometimes I wish I had died, but I’m glad I didn’t, as it turned out.”
Until meeting Mr Hansen at the local gym after a recommendation from his physiotherapist, Mr Ingram didn’t have much medical or rehabilitation input into his care because he lived near Alpha, a five-hour drive west of Rockhampton.
“I used to come back from Alpha to Tambo for six weeks and then go to Brisbane for a three-week stint,” Mr Ingram said.
He was too far away to get permanent, regular help but five years ago, he moved to a cattle property at Duaringa, a two-hour drive from the city, and this has opened up access.
Mr Hansen said it was “fairly normal” for people living in more remote areas to go for years without adequate rehabilitation.
“It’s easy for a capital city; you’ve got everyone around you but in a regional, and especially a rural area where he lives, it’s a two-hour trip from the nearest bigger city like Rockhampton,” Mr Hansen said.
“He just wasn’t getting the attention he needed.
“When we go out west, we find people like that all the time that can’t get enough… and they make do.”
Mr Hansen said falls from horses were a common cause of injury among farmers and those working on the land.
“You hear that the chopper brought someone in to hospital this morning and you just wonder what happens to them,” Mr Hansen said.
“All of the spinal rehab is done in Brisbane and they are transferred back to Rockhampton where they do have a rehab unit but after you leave hospital in the public system, it’s hard to follow people up.
“And I understand that. They are a long way out of town.”
Mr Ingram makes the four-hour round trip to Rockhampton twice a week for his rehabilitation where the team works on his balance and on preventing falls.
There has been a lot of focus on teaching him how to catch himself before he falls, and to stand up and keep going.
“We simulate the fact that he may be a bit brave in the paddock and he’s decided not to use any assistance and he has to get back to the car,” Mr Hansen said.
“And he’s got to do it otherwise he’s going to sleep the night in the paddock.”
First posted May 09, 2018 15:18:52