Brenden Borellini and Matt Tandy enjoying lunch at Mackay’s only cafe with a braille menu.

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http://www.abc.net.au/news/2018-06-02/call-for-more-food-venues-to-provide-braille-menus/9824784

Call for more food venues to provide braille menus

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http://www.abc.net.au/news/2018-06-02/more-food-venues-braille-menu/9824982

Eamon Sullivan

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http://www.abc.net.au/news/2018-06-02/eamon-sullivan/9823786

Push for cafés and restaurants to provide braille menus

Posted June 02, 2018 07:39:23

Although nearly 400,000 people in Australia live with some form of vision impairment, there are relatively few food venues that offer braille or large-print menu options.

This has been a fact of life for artist and photographer Brenden Borellini who is blind and deaf.

Despite having a love of food and eating out, Mr Borellini has always had to depend on someone else reading him a restaurant menu.

Earlier this year Mr Borellini successfully pushed for a council-owned cafe in Mackay to introduce a braille menu.

The cafe became the first eatery in the area to have a menu available that accommodated the needs of people who are blind or have a vision impairment.

“I think it’s a great idea for a local business to embrace a braille menu and it’s a step forward for Mackay,” Mr Borellini said.

“It means a lot — not just for me — but for people with vision impairment in general.

“It allows me to be independent when I’m ordering and I don’t have to rely on anybody.

“They [food venues] should continue to improve accessibility for people with a disability.”

‘The least we could do’

Former Olympic swimmer Eamon Sullivan, who now part-owns several restaurants in Western Australia, said providing braille menus was “the least we could do”.

“I had the privilege of competing [alongside] Paralympians at the Commonwealth Games and seeing the challenges they overcome day-to-day.

“Having a braille menu shouldn’t be a gesture, it should be a standard,” he said.

“It will go a long way for people who are blind or vision impaired to be able to go to a cafe and not have to ask people to read out a simple thing.

“It would just go a long way to make people feel included.”

Sullivan said providing one breakfast, lunch and dessert menu in braille would cost around $200 per venue.

“It just makes sense,” he said.

“All the vegan, gluten-free dietary requirements, coffee orders … everything is catered around people’s preferences rather than the cards they’ve been dealt.

“We always push ourselves to cater for everyone, and we realised we weren’t.

“I hope more people jump on board and do similar things and think about hospitality being hospitable for everyone.”

Few braille options

Restaurant chain Hog’s Breath Cafe introduced braille menus company-wide in 2000, which National Operations Manager Paul Piert said was part of allowing people of all abilities to enjoy the experience of eating at a Hog’s Breath Cafe.

“We are passionate about making sure blind and partially blind people, along with disabled people, that their experience in the restaurant is no less than anybody else’s,” Mr Piert said.

“It’s not only been received well but it’s actually the right thing to do.

“Our restaurants are fun and have an amazing atmosphere. We want to make sure that everybody can enjoy that.”

Mr Piert said there was a cost to producing two versions of the same menu but it was worthwhile.

“We absorb that [cost] as part of our business because it’s the right thing to do,” he said.

“I think in hospitality now you’ve got to make sure that you include everybody.”

Braille menus vital for independence

Karen Knight from Vision Australia said there needed to be more awareness of how vital braille is for people who are vision impaired.

“Braille really is the only way that someone who cannot read print can actually be literate … and it really is giving people the same access as their sighted friends and colleagues,” she said.

“It really is surprising, the lack of awareness.

“Initiatives like this — about having braille in the general community — are a great step forward.”

Ms Knight is blind and values not needing to rely on anyone to help her order her meal.

“Some people aren’t that confident about reading out loud and so they might only tell you the headings or they might say something like, ‘oh just the usual things’.

“I really value my independence, so to have a braille menu — which I’ve actually only experienced a handful of times in my life — I love it.

“I keep going back and back to those places that do have braille menus because it’s the independence factor I value so much.”

Topics: disabilities, food-and-beverage, food-and-cooking, discrimination, human-interest, mackay-4740, wa, south-fremantle-6162, north-fremantle-6159, fremantle-6160, east-fremantle-6158, perth-6000, subiaco-6008

http://www.abc.net.au/news/2018-06-02/braille-menus-needed-to-accommodate-patrons-vision-impaired/9811100

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

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

fungus growth

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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

Wall cavity

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http://www.abc.net.au/news/2018-05-30/water-damage/9813160