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NDIS apologises to Tasmanian family after son dies waiting for specialist bed

Posted June 01, 2018 15:35:14

Senior officials of the National Disability Insurance Agency (NDIA) have been grilled by a Senate Estimates committee over the case of a young Tasmanian man who died waiting for vital equipment.

The family of Tim Rubenach from Gray in north-east Tasmania spoke out against the scheme on Thursday after the 32-year-old’s death a week ago from pneumonia.

Mr Rubenach suffered from severe epilepsy and was unable to talk.

His family said he waited desperately and in pain for a special bed and motorised wheelchair promised by the scheme, but they never came before he died.

The case prompted federal independent MP Andrew Wilkie to call for a complete independent overhaul of the NDIS, saying he would be inundated by complaints on an almost-daily basis from Tasmanians who have encountered a “bureaucratic brick wall”.

In an often tense Senate Estimates question and answer session, several senators expressed incredulity about the apparent disconnect between the NDIA bureaucracy and families in dire need.

“Are you saying at your level you do not have a system to make sure that, on a case-by-case basis, people aren’t missing out on what they need?” asked Tasmanian Labor senator Carol Brown.

Fellow Labor senator Murray Watt of WA also demanded answers, asking: “Who is actually pushing the local area coordinators to make sure that the recipients are actually getting what’s in their plan?

“If this system is so perfect … why is this happening?, Senator Watt asked.

“What’s the biggest change that needs to happen to be made to this system of accountability to stop this happening?”

Officials apologise

The exchange prompted senior NDIA officials Robert De Luca and Vicki Rundle to apologise for Mr Rubenach’s delays and acknowledge his equipment did not “arrive on time”.

Mr De Luca said he had only become aware of the case in the media and was unsure whether the family had been contacted by agency representatives.

“We are seeking to roll this system out. As we go we will discover areas where we can improve interfaces and engagements,” Mr De Luca said.

Fellow agency official Michael Francis told Senator Watt there was “probably two elements” in answering his questions.

“The first is that we have partners in the community branch who are responsible for maintaining that relationship, contract management, monitoring the performance of those respective partners and the services that they provide,” Mr Francis said.

“So there will be KPIs within those contracts or agreements that we have with those particular partners in the community,” he said.

Advocate anger

The response by the officials drew an angry reaction from WA Greens senator and disability advocate Jordan Steele-John.

Senator Steele-John — who uses a wheelchair — described the Rubenach’s ordeal as a “prolonged crisis” at the hands of the NDIS.

“A man is dead. A family is grieving the loss of a son,” he said.

“Regardless of the various contextual factors around that case, you could not have written a more obvious cry for help if they had written ‘help me’ in the letters they have sent us and the letters they have sent the NDIA and the letters they have sent the Minister.”

“Speaking very frankly, they would not give a shit whether anyone in this room is particularly sorry about the death of their son.

They would want to know that the agency owns the failure that is represented in the death of their son, as does the Government who currently presides over it.”

“Disabled folk in this country have been dying in the hands of poorly delivered services for hundreds of years,” Senator Steele-John said.

“It’s nothing new.”

“The point of the NDIS was this was not to happen any more.”

A spokeswoman for the Commonwealth’s Department of Social Services, Cathryn Campbell, said the agency was looking into Tim Rubenach’s death, which she described as “a very sad case” and acknowledged there were “broader systemic issues”.

On Thursday, Tim’s mother Beverley Rubenach spoke of the family’s heartbreak and told the ABC the family had wanted to take him to the beach one last time, but was unable to without the promised wheelchair.

“He used to remember the days when he could run along the beach with his dog. And it got to the point where we couldn’t support him even with two people walking him to the beach,” Ms Rubenach said.

“So the all-terrain wheelchair was his freedom. He knew that he could get out and be a little bit independent.”

Topics: disabilities, health, health-administration, doctors-and-medical-professionals, government-and-politics, federal-government, launceston-7250, tas

http://www.abc.net.au/news/2018-06-01/tas-ndis-apology-after-tim-rubenach-ordeal/9824450

fungus growth

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AEST = Australian Eastern Standard Time which is 10 hours ahead of GMT (Greenwich Mean Time)

http://www.abc.net.au/news/2018-05-30/fungus-growth/9781112

Health authorities take months to fix mould and fungus, while resident falls ill

Posted May 30, 2018 07:08:09

In December last year, Jane noticed a musty smell coming from her brother Andrew’s clothes.

Andrew has Down Syndrome and lives with five other residents at Sale, in Victoria’s east, in a supported group home for people with a disability.

Andrew is unable to talk, but upon further investigation, Jane (surname withheld) found fungus growing on the skirting board of Andrew’s bedroom wall.

The home is run by Victoria’s Department of Health and Human Services (DHHS).

“It looked like a toadstool of about 7.5cm long growing out of that wall,” she said.

A shower had been leaking from an adjacent room, and mould had grown throughout Andrew’s chest of drawers, wall and carpet.

“We immediately notified the person [working] on that night and they obviously were quite shocked to find that growth and the wet clothing,” she said.

The carpet was removed after about a week but the bare concrete floor was left uncovered for the next five months.

Mould contributes to illness

Andrew’s family also raised concerns that the department had not properly tested for mould spores, which can easily spread.

The department assured them that it had been taken care of and there was no risk to Andrew or anyone else in the home, but Andrew continued to get sick.

“Around the time that we found the mould he did have quite a nasty respiratory infection,” Jane said.

“[The GP] was definitive that having been exposed to mould would be a contributing factor to his illness.

“It seems as if he has been ill more frequently and we’ve also noticed that he’s had inflamed eyes and different symptoms that we haven’t recalled him having prior to this,” Jane said.

Five months after the issue was first raised the department has now moved Andrew to temporary accommodation while a contractor replaces the affected wall and the floor covering.

“Here’s five months delay and in that time there has almost certainly been negative impacts on my brother and possibly others in his house,” Jane said.

Department’s handling ‘deplorable’

After the initial lacklustre response from the department, Jane reached out to a mould expert.

Specialist microbiologist Cameron Jones gave Jane advice after seeing the photos of the mould in Andrew’s bedroom and described the situation as “extremely serious”.

“Based on the photographic evidence there’s been long-term water damage to walls and floors.

“This needed to be dealt with immediately,” Dr Jones said.

He advised that the home’s residents be evacuated until spore testing had been conducted to ensure the residence was safe, but the department did not follow his recommendation.

“All of these moulds produce an acute infection but they also produce mycotoxins, which have a whole range of toxic [effects] on the body.”

“We’re not just talking about a respiratory-type complaint or a sinus infection, it can be significantly more serious.”

“Anyone who is immuno-compromised has a weakened immune system and can’t fight off these infectious agents,” Dr Jones said.

The ABC understands several of the home’s residents have compromised immune systems linked to their disabilities.

“It appears that the problem has been ignored or actively covered up,” Dr Jones said.

Dr Jones said he believed the department had failed in its duty of care.

“Deplorable. That’s my one-word response.”

The department told the ABC that more recent testing was carried out in May but did not comment about what kind of testing had been conducted when the issue was first raised.

“A contractor inspected the bedroom wall and found some old water damage,” the department said.

“No evidence of mould was found.

“However, to allay the family’s concerns, mould tests were undertaken by a microbiologist.

“The results from that surface and air testing were typical of an indoor environment and are therefore unlikely to have any associated health risks.”

Dr Jones said the department’s findings did not add up.

“If further building works are being implemented it means that whatever testing was done most recently has in a sense failed the indoor air quality [test] and the recommendation must have been to strip out and remove the affected areas,” he said.

DHHS admits it should have acted faster

The department said it, “acknowledges that more could have been done sooner to address this matter”.

“We apologise to both the client and the family for this.”

Jane said her family never received an apology from the department and the first time she was aware of it was when she was shown the department’s statement to the ABC.

“I have not received an apology, which I find quite extraordinary,” she said.

“I think it shows a lack of respect for those who are really trying to do the best for their relatives.

“My brother and many others in the disability sector are unable to speak up for themselves so they rely on having advocates to act on their behalf.”

Trust broken

Frustrated by the initial lack of action by the department Jane wrote to the Minister for Housing and Disability, Martin Foley.

“He responded basically directing us back to the managers who had failed to act.

“That was very disappointing,” Jane said.

The department said “the health and safety of clients is the department’s priority”, but Jane said the department’s inadequate actions proved the statement to be “empty rhetoric”.

“We had a trust that the department would have acted far more promptly.

“We kept emailing saying ‘what was going to be done?’.

“Unfortunately there have been previous failures and each time something goes amiss.

“It is disillusioning that it took media contact for the action to take place,” Jane said.

Jane advised people advocating for a family member with a disability to not rely solely on the department when they need to rectify a matter.

“Seek external advocacy and you’ll probably get a better outcome much more promptly than what we’ve achieved in this case.”

Topics: health, disabilities, community-and-society, family, carers, government-and-politics, sale-3850, warrnambool-3280, swinburne-university-of-technology-3122

http://www.abc.net.au/news/2018-05-30/disability-care-home-under-fire-for-negligence/9743926

Andy

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AEST = Australian Eastern Standard Time which is 10 hours ahead of GMT (Greenwich Mean Time)

http://www.abc.net.au/news/2018-05-30/andy/9781110

Fears NDIS delay will lead to ‘tsunami’ of mental health job losses

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.”

More than 2,000 people without support

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.”

‘Wipe-out’ of the mental health sector has started

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.

‘This is the kind of stuff that NDIS was meant to fix’

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.”

Transition in SA nears completion

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

http://www.abc.net.au/news/2018-05-21/fears-ndis-will-lead-to-mental-health-job-losses/9783600

NDIS’s ‘very cold’ attitude has parents of disabled boys considering legal action

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.”

‘Hundreds are having difficulties with NDIS’

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.

Topics: disabilities, health, government-and-politics, social-policy, welfare, community-and-society, hobart-7000, tas

http://www.abc.net.au/news/2018-05-21/parents-unable-to-access-basic-equipment-through-ndis/9783692

‘Momentous, stressful’ experience as NDIS claim review takes 15 months

Posted May 19, 2018 06:11:00

Mother-of-two Suzie Robertson says she feels blackmailed and pressured by the National Disability Insurance Scheme review process.

Her son’s claim has been under review for 15 months and she said the experience had been “momentous, stressful”.

“The wheels began to fall off” when she was told she would only receive funding for one of her son’s disabilities.

Ms Robertson said her son was worse off under the NDIS because he was unable access services he had previously been able to.

The NSW resident said she felt bullied by the process.

“When we were speaking to the planner he was using language like ‘You want a Mercedes Benz plan but your child is only eligible for a Mini Minor plan’,” she said.

“I was really shocked that was said to us.

“It made us feel awful, that we were asking for something my son didn’t deserve, that we were asking for more. Everything we were asking for was exactly what he had prior to the NDIS.”

Ms Robertson said at one point in the review she was offered funding for extra support, only to be told her plan would be cut into a quarter if she agreed to it.

In a statement, the National Disability Insurance Agency acknowledged Ms Robertson’s experience and empathised with the delays.

It said the agency was looking to progress her son’s review and achieve a satisfactory outcome.

NDIS more challenging in regional areas

Ms Robertson said while the concept of the NDIS was great, in regional areas it did not translate as well.

“In regional, remote and rural areas you don’t have the providers there,” she said.

“We were funded for a therapy assistant, but there are no therapy assistants on the NSW mid-north coast.”

He son is unable to access an occupational therapist because the wait times have become significant in the region due to an influx of people accessing funding.

In northern NSW, Bellingen mum Jenni Fenton is about to go through the review process.

Her daughter Maala, who has celebral palsy, is also significantly worse off under the NDIS.

“Ironically when you are living this life, the time to do appeals is very limited … you can get fully taken up with budgets, managing government processes,” she said

“What we all want for our kids is ordinary lives, jobs, homes … and to do that the Government has to back that up with funding so we don’t have an underclass of people.”

Rollout pushed too quickly in NSW, advocate says

Disability Advocacy NSW is contracted to help people with the review process, and said the Government must do more.

Chief executive Mark Grearson is particularly concerned about the plight of regional people.

“They are a long way from anyone else so there is less access to services,” he said.

Mr Grearson said the rollout had been worse in NSW, which was the first state to sign up.

“NSW has been in a big rush to get out of disability services and in doing so they have pushed the rollout too quickly,” he said.

“I think that is now starting to have an effect. Other states have done it in a more gradual process.”

Social Services Minister Dan Tehan said a reform of this scale meant there were issues that needed to be worked through.

He said significant work to improve the NDIS review process had already started, and the Turnbull Government had provided funding in this year’s budget for the development of new service delivery models in rural and remote communities.

Earlier this week a report described the review process as “lacking fairness and transparency”, and found people were waiting up to nine months for their cases to be resolved.

Topics: disabilities, government-and-politics, community-and-society, regional, port-macquarie-2444, bellingen-2454

http://www.abc.net.au/news/2018-05-19/mother-feels-blackmailed-ndis-review-hell/9774928

‘It just gets debilitating’: The NDIS families desperate for a better scheme

Posted May 19, 2018 04:49:26

Sonya Ludlow is a strong woman. When you’re bringing up seven children, resilience and thick skin are almost compulsory.

But the Adelaide mother was left feeling “absolutely awful” after a review of her seven-year-old son Samuel’s funding National Disability Insurance Scheme (NDIS) plan.

“[The NDIS representative] more or less said, ‘by my sixth child I should know how to be a parent and how to look after my children’,” Mrs Ludlow said.

All but one of her children sit on the autism spectrum.

The nine-month review was sparked after Sam’s funding package was thousands of dollars less than expected.

The Ludlows maintained fortnightly speech therapy and occupational therapy sessions, assured the review would be wrapped up quickly.

But by December last year, Sam’s funding cut out, and, unable to afford $150 sessions, the family was forced to withdraw him from the treatment. He only returned last week.

“I’ve got lovely support through my beautiful husband [David], but I often wonder if I was a single mum whether I’d be able to do this.”

Last December, Sam’s case was one of about 14,000 sitting in the NDIS’s review backlog, according to a damning ombudsman’s report this week. Then, about 140,000 participants were in the scheme.

The review queue has since shrunk, but the agency in charge of the world-first scheme — a Commonwealth department known as the National Disability Insurance Agency (NDIA) — still receives about 640 review requests each week.

Some of those requests do not reflect badly on the NDIA. People can request an unscheduled review if their circumstances change, for example if their condition improves.

But the agency often is culpable when it comes to another type of review, known as an internal review. People ask for these when they disagree with the plan and funding package they are given.

Some reviews come from people who feel short-changed, given the state government support they previously received, or because of the high expectations associated with the scheme.

But the Government is also to blame. The NDIS’s full-scheme launch in mid-2016 was a disaster. The computer system failed. A backlog of NDIS applications quickly emerged.

Plans were then often completed over the phone and rushed. Key staff lacked training and experience. There was little consistency in the decisions being made.

The scheme’s IT system remains hopeless, and elements of its bureaucracy are not much better, according to the watchdog’s report.

The agency accepted all 20 of the ombudsman’s recommendations, and Social Services Minister Dan Tehan said work was underway to bust the backlog “over coming months”.

“It’s something that we need to address, and it’s something we are addressing,” Mr Tehan said.

“Special teams have been put in place to address this issue.”

‘There are enough challenges in life for us as a family’

Damian Palmer secured an NDIS plan in November 2016 for his daughter Bethany, now 18, who has a profound intellectual disability.

Since then, he said dealing with the agency had been a source of “constant frustration”.

“It just gets debilitating, it just wears you out,” Dr Palmer said.

“There are enough challenges in life for us as a family.”

After receiving his daughter’s first plan, the Sydney-based academic quickly demanded a review.

“She is tube-fed, but there was no funding for the required equipment,” he said.

Dr Palmer said the NDIA did not clarify what type of review he wanted — an unscheduled review or an internal review — and then wrongly conducted an unscheduled review.

“And that meant if we weren’t happy with the outcome … we weren’t able to go to the Administrative Appeals Tribunal,” Dr Palmer said.

“In [the unscheduled review] they decided to take away $20,000 funding they’d originally allocated for an assistance dog.”

Dr Palmer and his wife Christine secured additional funding for the tube-feeding equipment and other supports, but then had to run a six-month online fundraising drive to secure the assistance dog.

‘Staggeringly bad’ internal processes

Some of the NDIA’s processes are staggeringly bad, as highlighted by ombudsman Michael Manthorpe.

He had to explicitly recommend the agency, “clarify with the participant whether they are seeking an internal review of [a] decision or a reassessment of their plan”.

The computer system used by the NDIA automatically spat out the wrong letter after an internal review decision has been made, Mr Manthorpe noted.

“The participant may end up with only one [incorrect] letter or two [conflicting] letters.”

The ombudsman also pointed out the agency’s computer system and processes did not allow staff to make simple changes without triggering a full plan review.

The NDIA said it was currently updating its IT system, and trialling face-to-face planning sessions.

Key questions are: how quickly will the computer systems be fixed, and the planning process be improved?

Both need to happen soon — almost half a million people will be part of the $22 billion-a-year scheme within three years.

Federal Labor is demanding the Coalition lift a staffing cap imposed on the NDIA (which curiously does not limit the number of contractors that can be engaged — staff often with little disability sector or public service experience).

The Government could also accelerate investment to fix the agency’s dud computer system.

Sure, this would be an upfront budgetary hit, but it would not be ongoing spending. It could cut the number of reviews needed, reduce the number of NDIA staff required over the medium-term, and help ensure the NDIS’s dramas do not spill into the next decade.

Quickly remedying the NDIS’s problems would also ease the burden on people with disabilities and their families — those the scheme is there to support.

As Sonya Ludlow put it: “I wish it was just easier.”

Topics: government-and-politics, disabilities, australia

http://www.abc.net.au/news/2018-05-19/the-ndis-families-desperate-for-a-better-scheme/9776328

A family’s long fight for support as dementia takes hold of a loving father

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.”

Family waiting for specialist equipment, home upgrades

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.”

Topics: disabilities, health, alzheimers-and-dementia, government-and-politics, melbourne-3000, vic

First posted May 14, 2018 07:10:28

http://www.abc.net.au/news/2018-05-14/fight-for-ndis-support-as-dementia-takes-hold-of-a-loving-father/9756176

Does $10 extra a week even make a difference? Q&A talks tax on Budget eve

Updated May 07, 2018 23:59:28

With tonight’s Budget looming large over proceedings, the Q&A panel talked tax cuts and their real-world repercussions, or lack thereof.

Following the ABC’s report on Monday that low and middle-income earners will get tax cuts worth up to $10.50 a week in the Budget, Labor MP Linda Burney pointed out that doesn’t amount to a whole lot when a cup of coffee can cost about $5.

Nor surprisingly, the Government’s Tim Wilson argued otherwise, calling it “relief that people need”.

Everyone agreed wider-reaching tax reform was needed, with proposed tax cuts for banks in particular coming under close scrutiny.

Federal Liberal Member for Goldstein Mr Wilson and the opposition spokesperson for human services Ms Burney were joined by environmentalist Stanley Johnson, design disruptor and cultural provocateur Leyla Acaroglu and Jeremy Heimans, co-founder and CEO of Purpose.

Do tax cuts even work?

Mr Wilson thinks so, but said part of the problem is people aren’t dying at 68 anymore.

“The people who are earning, paying the taxes aren’t necessarily the people who are getting the benefits of the tax,” he said.

“If you do a proper analysis of the tax system over life cycles, at the moment the people who are aspiring to opportunity and to achieve things for security for their family are actually paying the most tax and the people who hold the most wealth or a portion of the most wealth are paying the least tax.

“There’s a difference between having wealth and earning income.

“And the tax system was set up on the assumption they would die at the age of 68 and we’re going to have to confront that reality.”

Don’t get hooked on the $10-a-week thing, Mr Wilson explained, saying this would just be the start.

“That’s only one step towards bigger tax reform which is what I’d like to see. It is relief that people need,” he said.

“The reality is there are huge pressures on families and households and it will enable people to stimulate the economy more and employ more people.”

Ms Burney said two cups of coffee per week was not a “decent” enough tax cut.

“I think that when you’re having a look, if you’re going to reform the tax system then proper reform it,” she said.

“And make decisions that are going to assist people in the best way and assist those that need the cut.

“And we have been arguing consistently against this huge company tax cut because we think that $65 million could be better spent in the sorts of things I’ve mentioned, including hospitals, education and the like.”

‘Move on from the old tax cuts thing’

Mr Heimans said Australian politicians are living in the 90s, with Dr Acaroglu agreeing we are stuck in an ineffective cycle.

“We should work to push on things like the tax cuts and say, ‘Can’t we be more bold and more imaginative as a country than just to whip out the old tax cuts thing again?'” Mr Heimans said.

“There are so many opportunities for progressive economic policy; retrain and offer life-long learning to every Australian, opportunities to incubate small businesses.

“So the idea we’re stuck in this time warp where, as all the economic evidence is this doesn’t work.

“Real wages are stagnant, while corporate profits go up 20 per cent a year, and we’re stuck having the debate about business tax cuts. We can do better as a country.”

Dr Acaroglu said there are more creative ways the Budget could be used.

“An extra $10 a week that’s going to make me vote for you or someone else, it should be about dedicating that kind of economic surplus to collective benefits,” she said.

“So whether it be addressing catastrophic recycling disaster situation wee have going on or perhaps protecting the Great Barrier Reef or any other natural resources we would probably donate $10 a week to see protected and conserved for our future generations which is what intergenerational equity is about.

“You guys with the power making sure you make decisions today that don’t screw it up for the rest of us.”

Wait, why are the banks getting tax breaks as well?

Much ire was drawn at the Government’s existing promise to cut company tax, a move that would benefit the banks. The same banks currently being drawn over the coals by a royal commission.

Mr Johnson, author and father of British Secretary of State Boris Johnson, said perhaps the timing of that wasn’t the best.

“Speaking with all the humility of an outside observer, I do wonder whether just at this moment this is the moment to give the bankers a tax cut,” he mused.

“I think … you have plenty of other things to do. I rather wonder whether banks need to be right up there in the firing line in terms of getting the tax cut. Couldn’t they hang around a bit?”

It’s not that simple, Mr Wilson explained. The cuts will be for a wide range of companies, of which the banks happen to be a part.

“All the companies that are above the threshold will get the tax cut and enable them to go on and create jobs and create the opportunities for the next generations of Australians.

When asked if the banks could be excluded from the benefits, he said it was unlikely.

“I suspect not because you don’t want an environment where you’re creating special classes of businesses that get tax cuts,” Mr Wilson said.

“Not all banks by the way that are covered by the tax cuts have been caught up in problems in the royal commission.

“It’s a bad policy position which will inevitably only lead to where we pass moral judgements on who pays tax and how much?”

Wait to see what happens in the Senate, Ms Burney said.

“The tax cut has not passed the Senate. And that’s a really important point to keep in mind,” she said.

“I think that there is absolute shock on what’s coming out of the royal commission and the idea there’s going to be a big chunk of the company tax cut given to the banks I think is worrying many Australians.”

Why is the NDIS so inflexible?

It wasn’t all about the Budget and the tax system.

Chris, who lives with cerebral palsy, used his iPad to ask a blunt and essential question about the NDIS — why is this rollout so difficult and inflexible?

Is New Power a force for good or evil?

Why do older generations seem so fearful of young people? Mr Heimans says New Power, reliant on social media and driven by younger generations, can be a force for good, or it can be abused.

Topics: government-and-politics, disabilities, tax, australia

First posted May 07, 2018 23:50:45

http://www.abc.net.au/news/2018-05-07/budget-eve-tax-cuts-dominate-qanda-discussion/9735778