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Family believes death of disabled son was ‘hastened’ by NDIS delays

By Fiona Blackwood

Updated May 31, 2018 19:15:27

The family of a Tasmanian man who died while waiting for a bed through the National Disability Scheme believes his death was hastened by the delay in the delivery of vital medical equipment.

Tim Rubenach died just over a week ago from pneumonia.

The 31-year-old contracted bacterial meningitis as a baby and suffered from severe epilepsy.

His mother, Beverley Rubenach, said a tilt bed was approved by the NDIS for her son in February but its delivery was delayed for months.

“They decided to deliver the bed last Friday but the trouble is we buried our son on Saturday,” she said.

She said her son suffered from bleeding stomach ulcers and a tilting bed was urgently needed.

“I believe it certainly hastened his death because the bed sores were horrific and because he was just waiting and waiting for the bed,” she said.

Ms Rubenach said in the end, the Launceston General Hospital provided a specialised bed for her son.

“We brought the bed and we put it in the lounge room and sat beside him 24/7 and held his hand because he was in extreme pain,” she said.

NDIS described as ‘form of abuse’

Ms Rubenach said her family had suffered an extreme failing and gross neglect by the NDIS.

“I believe the NDIS, the National Disability Scheme, is one of the biggest forms of abuse that’s happening at the moment,” she said.

She said her son was eligible for a motorised wheelchair in February this year but it never arrived.

“We’d take him out when we could in his wheelchair, his old wheelchair, and he would look down the road to see if a vehicle had come delivering his new wheelchair so he could go to the beach,” he said.

“The 9th of May was his birthday and he was still able, if he had the wheelchair, we could have taken him to the beach one final time, but it didn’t come.”

She believes money is being spent on NDIS administration but not on the people who need it.

“They are holding onto money, they are holding onto the funding and we’re not the only ones. There are hundreds out there with the same story to tell,” she said.

Family calls for inquiry

Ms Rubenach said her son, Tim, should have been a beneficiary of the NDIS but instead was a victim.

“We’re going to fight, we promised Tim on his dying bed that our family will fight and fight and fight … for the rights of people to get what is rightfully theirs,” she said.

Independent member for Denison, Andrew Wilke, also promised to take up the cause of the Rubenachs.

“This is a heartbreaking example of the extreme situation which is all too common with the NDIS,” Mr Wilke said.

Mr Wilke has written to the Assistant Minister for Disability Services, Jane Prentice, calling for an inquiry.

He said his office has been contacted by numerous people eligible for support under the NDIS.

But he said “they are suffering at the hands of extensive delays or bureaucratic brick walls”.

The NDIS and Ms Prentice were contacted for comment

Topics: disabilities, health, social-policy, welfare, community-and-society, launceston-7250, tas

First posted May 31, 2018 18:15:29

http://www.abc.net.au/news/2018-05-31/ndis-delays-hastened-disabled-sons-death-says-family/9821384

‘We’re going to fight’: Family’s pain over NDIS treatment of son

Updated June 01, 2018 06:06:08

The family of a Tasmanian man who died while waiting for a bed through the National Disability Scheme believes his death was hastened by the delay in the delivery of vital medical equipment.

Tim Rubenach died just over a week ago from pneumonia.

The 31-year-old contracted bacterial meningitis as a baby and suffered from severe epilepsy.

His mother, Beverley Rubenach, said a tilt bed was approved by the NDIS for her son in February but its delivery was delayed for months.

“They decided to deliver the bed last Friday but the trouble is we buried our son on Saturday,” she told ABC Hobart.

She said her son suffered from bleeding stomach ulcers and a tilting bed was urgently needed.

“I believe it certainly hastened his death because the bed sores were horrific and because he was just waiting and waiting for the bed,” she said.

Ms Rubenach said in the end, the Launceston General Hospital provided a specialised bed for her son.

“We brought the bed and we put it in the lounge room and sat beside him 24/7 and held his hand because he was in extreme pain,” she said.

NDIS described as ‘form of abuse’

Ms Rubenach said her family had suffered an extreme failing and gross neglect by the NDIS.

“I believe the NDIS, the National Disability Scheme, is one of the biggest forms of abuse that’s happening at the moment,” she said.

She said her son was eligible for a motorised wheelchair in February this year but it never arrived.

“We’d take him out when we could in his wheelchair, his old wheelchair, and he would look down the road to see if a vehicle had come delivering his new wheelchair so he could go to the beach,” he said.

“The 9th of May was his birthday and he was still able, if he had the wheelchair, we could have taken him to the beach one final time, but it didn’t come.”

She believes money is being spent on NDIS administration but not on the people who need it.

“They are holding onto money, they are holding onto the funding and we’re not the only ones. There are hundreds out there with the same story to tell,” she said.

Family calls for inquiry

Ms Rubenach said Tim should have been a beneficiary of the NDIS, but instead was a victim.

“We’re going to fight, we promised Tim on his dying bed that our family will fight and fight and fight … for the rights of people to get what is rightfully theirs,” she said.

Independent member for Denison, Andrew Wilkie, also promised to take up the cause of the Rubenachs.

“This is a heartbreaking example of the extreme situation which is all too common with the NDIS,” Mr Wilkie said.

Mr Wilkie has written to the Assistant Minister for Disability Services, Jane Prentice, calling for an inquiry.

He said his office has been contacted by numerous people eligible for support under the NDIS.

But he said “they are suffering at the hands of extensive delays or bureaucratic brick walls”.

The NDIS and Ms Prentice were contacted for comment

Topics: disabilities, health, social-policy, welfare, community-and-society, launceston-7250, tas

First posted May 31, 2018 18:15:29

http://www.abc.net.au/news/2018-05-31/tim-rubenach-death-hastened-by-ndis-family-says/9821384

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

Families left in limbo after delays in building new disability homes

Posted May 28, 2018 13:40:14

People with a disability living in large residential centres in New South Wales are being left in limbo due to a delay in the construction of smaller group homes.

David Cuneo has lived at Newcastle’s Stockton Centre for people with disabilities for much of his life, and his mother Wendy said he had been let down by promises of a new home.

The Stockton Centre was set to close this year, but now the NSW Government is refusing to even set a timetable on when it will shut and when residents will be given new homes.

“Our residents are disabled, they’re not stupid, they know that something’s happening,” Mrs Cuneo said.

“They’ve been promised all sorts of things and they’re not getting it and it’s very upsetting for them.”

Centres were due to close mid-year

The Government is defending delays in constructing new disability homes in the Hunter region to cater for hundreds of people still living in large residential centres.

The centres at Stockton, Kanangra at Morisset and Tomaree in Port Stephens are still home to about 390 people with disabilities.

Residents are slowly being moved into new, smaller group homes in the community, and all three centres were due to close by the middle of the year.

In March 2017 the Government awarded a contract to build 78 new group homes to a consortium, Home4Life, which included Hunter-based housing provider Compass Housing and not-for-profit developer BlueCHP.

Opposition spokeswoman for the Hunter and Port Stephens MP Kate Washington said families were now being told none of the new homes had been built.

“We understand that the deal just does not add up, so they cannot make it work,” she said.

“Residents at Stockton, Tomaree and Kanangra are now left in limbo without anywhere to be moved to.

“We now face a possible closure date in 2020 for these residential centres.”

Delays in building new homes

Disability Services Minister Ray Williams admits a delay in the process means the new homes are still only at the design stage.

He said a new tender had been called for organisations to construct the homes.

“I do want to stress on behalf of everybody and particularly the families of people with disability in the Hunter that our absolute priority is the continuity of services on behalf of those people, and the smooth transition from their large residential homes into the new residences we will build in the Hunter,” he said.

“We own the land up there already. We made a major investment in that and there are some commercial in confidence issues that we are dealing with.

“We have delivered hundreds of new homes right across NSW. There’s been a delay, we were completely up front with everyone.

“At the end of the day, we end up with lovely new homes with a maximum of five people living in them, and they are multi-million dollar residences equipped with everything needed for a really lovely quality of life.”

Families and staff ‘left in limbo’

Mrs Cuneo is not convinced her son will be better off.

“To me personally, my husband and I are happy where he is, but a lot of families are very confused and very worried,” she said.

“The staff morale at Stockton is also devastatingly low. We’ve no longer got a handy mart, a little shop we had that sold just about everything.

“We’ve no longer got a canteen, last year we didn’t have Carols by Torchlight, we didn’t have Santa on the oval, we’re not allowed to have a fete anymore. It’s very sad.”

Mr Williams was reluctant to set a new date for the closure of the large residential centres.

“I wouldn’t put a date on it at this point in time. At the end of the day, we need to get this right.

“We want to deliver high-quality homes. We want to devolve from the large residential centres, giving people a respectful quality of life with all the appropriate facilities and resources that they need.”

Ms Washington said in the meantime, services for residents were winding down at the large centres.

“The Government has removed services from the Stockton centre. Meanwhile we learn that they knew residents had nowhere to move to and would be staying there for longer,” she said.

“The mismanagement, the lack of care that’s being shown by this Government is truly disgraceful.”

Topics: disabilities, community-and-society, state-parliament, stockton-2295, morisset-2264, shoal-bay-2315

http://www.abc.net.au/news/2018-05-28/families-left-in-limbo-after-disability-homes-delayed/9806878

4yo Harry can’t walk, but he’s just kicked his first footy goal

Posted May 28, 2018 09:17:20

When Harry Waechter kicked his first goal in junior football, the crowd at the suburban oval erupted with cheers and clapping.

It was a moment many thought the four-year-old who has cerebral palsy and cannot walk would never experience.

Thanks to his dad, Ben Waechter, and support from the SANFL Juniors competition, Harry had the opportunity to play for the Athelstone under 7s in an exhibition match against Mawson Lakes yesterday.

Mr Waechter used an upright mobility device called an “Upsee”, which allows children with movement delays to stand and move with the help of an adult.

“He wears a vest that connects onto my belt and then we tie his feet to my feet with a footplate so basically when I walk, he walks,” he said.

While out on the field, Mr Waechter said Harry was using his sign language to say “more”.

“He loves it,” Mr Waechter said.

“It’s good for his legs, it starts building his leg muscles up and just getting out of his chair, he loves doing that.”

An inclusive game all round

Harry was also joined on the field by nine-year-old Josh Weller who lives each day with cystic fibrosis and hydrocephalus, a build-up of fluid on the brain that must be drained through a shunt.

Josh’s dad Greg Weller said his “footy fanatic” son was given the all clear by his neurosurgeon to play in the match as long as he wore a helmet to help protect the shunt inserted in his head.

“He loves playing footy — he was rapt, and to have that banner to run through and to see Harry score a goal and he scored a goal in the first quarter, that was fantastic, he loved it,” Mr Weller said.

“The kids have really embraced it, which is fantastic to see.

“It’s so special to see kids give other people who perhaps don’t have the opportunities that they have recognise that and support them out on the field.”

Mr Waechter hoped the exhibition match would encourage other sporting clubs to find a way to include children with disabilities or medical conditions.

“We’re just encouraging other clubs to get involved and just make it happen,” he said.

“It’s about just having kids included in team sports, there’s a lot of kids out there with disabilities or medical conditions or injuries that don’t get that team sporting experience.”

Athelstone Football Club coach Shane Hatchard said it was fantastic to the other players support Harry and Josh.

“The kids couldn’t wait to get around Harry as their captain, give him a high-five, pat him on the back and when he scored a goal I think everyone saw all the love come from everywhere, it was great,” he said.

“We would like every sporting club of every sporting type to take this on.

“From our point of view, it shouldn’t be hard, just make it happen.”

Topics: community-and-society, disabilities, cerebral-palsy, diseases-and-disorders, athelstone-5076, sa, adelaide-5000, mawson-lakes-5095

http://www.abc.net.au/news/2018-05-28/upsee-footy-boy-cerebral-palsy/9806358

Feeding time

Posted May 27, 2018 05:53:04

The rescued kangaroos received a special treat usually reserved for the younger ones.

ABC Central Victoria: Larissa Romensky

Topics: community-and-society, human-interest, schools, primary-schools, environment-education, education, animals-and-nature, animals, disabilities, people, elphinstone-3448

http://www.abc.net.au/news/2018-05-27/feeding-time/9797002

Mr Boo the kangaroo gets a global audience

Posted May 27, 2018 05:53:04

School children around the world are learning about the kangaroo through the Mr Boo program, which aims to teach children about wildlife conservation.

The program started at a wildlife shelter in Elphinstone in central Victoria, was picked up by a primary school in Melbourne, and has since spread to other parts of the world.

The Mr Boo kangaroo education-based program designed for primary school-aged children is being taught in Kenya and Germany and will soon be in some schools in Iran, Iraq and China.

The program was created by wildlife rescuer Nikki Medwell, who wanted to take her love of kangaroos to a larger audience.

“It’s basically trying to get the younger generation to appreciate our wildlife,” she said.

After Grade 4 teacher Melinda Whittle paid a visit to the shelter, she was inspired to include the program at her school, Our Lady of the Pines at Donvale in Melbourne’s east.

She said it had a great connection to the curriculum sustainability unit, and taught students about their local ecosystem and wildlife.

“We’ve got lots of kangaroos in the area and it’s been a way for the students to identify the threats, such as development and loss of habitat, and the result for our local kangaroos,” Ms Whittle said.

The global connection with other schools began with a Facebook penpal program connecting Ms Medwell with educators wanting to teach their students English, and about conservation.

“If [the students] want to learn they have to read [the material] in English and if they want to submit their request to become a Roo Ranger they have to write a letter in English,” Ms Medwell said.

Learning to empathise with wildlife

The resources of the self-funded program are in the form of books and swap cards featuring pictures and information about kangaroos.

Children’s author Margaret Warner has also donated her Kangaroo Footprints book, which features activities and facts about Australia’s kangaroos.

Once the children request to become Roo Rangers they submit their stories or pictures to receive a Roo Ranger certificate.

“It asks them to always protect and honour kangaroos and it also says we hope that one day they’ll grow up to become a wildlife protector,” Ms Medwell said.

Ms Whittle said another benefit of the program was that it linked students with wildlife groups in the community.

“It’s a great real-life opportunity for us to have access to someone who is out there in the field working with our wildlife,” she said.

Ms Whittle’s students recently visited their local state bush park where they saw a mob of kangaroos and also met local wildlife carers.

“The kids absolutely loved it,” she said.

Kenyan students learn about Mr Boo

Conservation issues are relevant to students across the globe.

For the past three months, students at Maryland Nursery School in Likoni, Kenya have been learning about their country’s elephant program, in response to poaching, as well as about Australia’s kangaroo wildlife shelters.

Teacher Beryl Organa said the Mr Boo program was a good way to introduce children to conservation issues in a fun and accessible way.

“They get to draw pictures of the kangaroos and do colouring in among many other fun activities, like role playing,” she said.

“They have learnt to empathise with the animal family — they are now talking more about caring for animals.”

The legacy of Mr Boo

The program first came about when Ms Medwell and her husband moved to their bush property in Elphinstone several years ago.

Their 60-acre property was home to kangaroos, which was the catalyst for the couple to open a wildlife shelter.

Their first rescued kangaroo was named Mr Boo.

Growing up in the 1970s, Ms Medwell’s introduction to animals was largely African ones — elephants, giraffes, zebras and the like — and she was determined to change that for future generations.

“I don’t ever remember seeing anything really about Australian native animals — even in story books,” she said.

Topics: community-and-society, human-interest, schools, primary-schools, environment-education, education, animals-and-nature, animals, disabilities, people, elphinstone-3448, donvale-3111, china, iraq, iran-islamic-republic-of, germany, kenya, melbourne-3000

http://www.abc.net.au/news/2018-05-27/central-victorian-kangaroo-school-education-program-goes-global/9800628

Nikki Medwell

Posted May 27, 2018 05:53:04

Nikki Medwell at home on her 60 acres bush property in Elphinstone in central Victoria with two rescued kangaroos.

ABC Central Victoria: Larissa Romensky

Topics: community-and-society, human-interest, schools, primary-schools, environment-education, education, animals-and-nature, animals, disabilities, people, elphinstone-3448

http://www.abc.net.au/news/2018-05-27/nikki-medwell-with-kangaroos/9796986

Melinda Whittle and class

Posted May 27, 2018 05:53:04

Grade 4 teacher, Melinda Whittle sitting at kangaroo corner complete with crocheted kangaroos.

Supplied: Our Lady of the Pines

Topics: community-and-society, human-interest, schools, primary-schools, environment-education, education, animals-and-nature, animals, disabilities, people, elphinstone-3448

http://www.abc.net.au/news/2018-05-27/melinda-whittle-and-class/9800698

Learning English

Posted May 27, 2018 05:53:04

Children around the world learn English through the Mr Boo kangaroo education program.

ABC Central Victoria: Larissa Romensky

Topics: community-and-society, human-interest, schools, primary-schools, environment-education, education, animals-and-nature, animals, disabilities, people, elphinstone-3448

http://www.abc.net.au/news/2018-05-27/learning-english/9797138