Access: How many agencies does it take to change a light bulb?
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Tom Adson, in reply to
Children need opportunities to learn, become strong and be healthy in caring communities. Challenges do them no harm
The disabled need to have meaningful and productive lives within their capability, and a little extra capacity built in for discretionary decisions around what they would like to do. Those of us with full capacity must try to create space for them to grow. Challenges do them no harm, they just have to be appropriately managed.
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Power outages are a problem across the ditch as well…
https://au.news.yahoo.com/sa/a/30381918/disabled-sa-man-dies-in-blackout/ -
Rosemary McDonald, in reply to
This has been bothering me since you posted this story...
Fisher and Paykel have a kit...http://www.cpapbatteries.nz/index.php/fisher-paykel-c400.html
would this work with the machine in your home?
$600 is small change for a life, and priceless for piece of mind....methinks this would be the kind of equipment expense that would be justified from the Ministry..either through your local EMS agent or through Enhanced IF.
All else fails...a cert for a Lottery Grant.
Or, perhaps F&P could donate one?
Wouldn't hurt to try.
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Angela Hart, in reply to
This is the Rolls Royce solution.
There doesn’t appear to be any provision for back-up power supply routinely through the DHB. If you are medically dependent, that is you, require electrically powered support most of the time, you can get a letter from the hospital to take to the MSD to ask for funding through them. It is possible funding may be available through Rotary, the Lions, the Freemasons or the Lotteries Board but is it reasonable to expect people in poor health, with little spare energy, to have to go begging for peace of mind/life saving funding?I think this is disrespectful, demeaning and devaluing of their lives. Simply not good enough.
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Rosemary McDonald, in reply to
This is the Rolls Royce solution.
No, it is the solution recommended by the Coroner in 2012.
No need to read it all,
The coroner adopted the recommendation in the Summary
of the Southern District Health Board event review summary.
He recommended that the availability of non-invasive ventilation machines, with a battery backup, be provided for patients, such as the deceased, who require mechanical assistance to breathe when clinical circumstances dictate this for such patients.
The coroner directed that a copy of this finding be forwarded to the Ministry of Health to ensure that the recommendation is considered by all health boards.My recommendation would be to slap someone around the ears (metaphorically speaking) with the Coroner's recommendation.
And speaking of disrespectful and demeaning and simply not good enough...I found this...https://givealittle.co.nz/cause/help4cory
which if correct, is also more than a little bit scary.
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Angela Hart, in reply to
And speaking of disrespectful and demeaning and simply not good enough…I found this…https://givealittle.co.nz/cause/help4cory
which if correct, is also more than a little bit scary.
It can't be the whole story, if any of it is true.
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Angela Hart, in reply to
No, it is the solution recommended by the Coroner in 2012.
I have yet to follow through with the DHB and will use this when I do, thanks Rosemary.
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Update, and guess what the folk commenting are saying?
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More about this from the Herald
In 2007, Mangere woman Folole Muliaga died the same day a contractor to Mercury Energy cut the power to her home. A coroner later found the 45-year-old, who was using an oxygen machine, died as a result of morbid obesity, but also that the loss of power played a part in her death.
Less than a month later, Mercury Energy introduced changes to prevent a repeat of the tragedy, including requiring customers facing power disconnection to receive a personal phone call to check whether there are medical or hardship reasons not to cut off the electricity.
The Electricity Commission, now called the Electricity Authority, also introduced voluntary guidelines - involving electricity retailers, hospitals and GPs - to identify and help protect vulnerable people from electricity disconnection.
Nine years.
Nine whole years and still nothing in place to protect vulnerable people from this...
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And....man-charged-over-powercut-that-led-to-taupo-womans-death
Follow up to this...
Taupo-woman-Fai-Deane-dies-after-crash-cuts-Unison-Networks-power-to-ventilatorA 21-year-old Rotorua man will appear in Taupo District Court on Wednesday charged with being a criminal nuisance in relation to the outage that stopped Fai Deane's ventilator working.
Had this lady's ventilator had a battery back-up....
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One worrisome aspect of this particular case is the implication in the article that had the power company known of the medical dependency, they would have done something. In my experience the power company considers it has no responsibility in this regard because it cannot and does not promise to supply uninterrupted electricity.
Battery back-up is another matter. Especially since this lady had only recently been discharged from hospital with the ventilator, she was clearly dependent on the machine for her life. The DHB should shoulder some responsibility here as it did not provide any back-up, if it had she would not have died at this time.
Only a small number of people are in this precarious situation, it is hard to understand why DHBs do not address the problem, as it would not be terribly costly.
Of course, it's cheaper still to just let people die. -
If a person's life depends on a ventilator, then it MUST have a battery back-up. It's not the car-crash or the electricity company that is responsible for the death, it is the DHB for supplying a life support device that was not fit for purpose.
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Taking a health organisation to court for their role would be interesting. The Ministry's lawyers have previously argued that they have no duty of care, but I'm not sure how low DHBs would stoop.
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Rosemary McDonald, in reply to
fit for purpose.
Of course, it’s cheaper still to just let people die.
Angela Hart is, sadly, correct.
I suspect that there is, actually, deep in the bowels of the Ministry of Health operating policy, a redacted section that does say "no heroic measures" for 'consumers' who need "x" level of intervention to keep them alive.
This secret section is revealed only to those who attain a certain level of seniority in the bureaucracy, and it dictates their every fiscal decision...and the exalted ones are sworn to secrecy on pain of death.
The only explanation for some of the shitty decisions they make.
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The issue with emergency back-up for breathing machines continues....
http://www.stuff.co.nz/marlborough-express/news/86965325/marlborough-disability-register-proposed-for-disaster-response -
From the link above:
Moran was unharmed but shaken by the 7.8 magnitude November 14 earthquake, which struck just after midnight and felt strongly in the upper South and lower North Islands.
"It was pretty scary. It is really scary when you can't get out of bed and the power goes off, and you're reliant on some type of breathing machine," Moran said.
He needed to use the breathing machine when he was lying down, he said.
"My wife had to dress me and get me into my chair."
He asked his wife Sharon to turn off the water and gas and they stayed up until 3am, debating whether or not to leave the house.
If he didn't have a partner......
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Rosemary McDonald, in reply to
If he didn’t have a partner……
He'd be in a spot of bother.
However, after Christchurch, Civil Defence did get together with the necessary groups to formulate a disability specific 'disaster preparedness' plan.
Much of it is about planning and networking, but also about building resilience and self sufficiency. (I know the latter is relative and objective...but it does make sense for the person with the disability to lead their own survival plan.)
Actually, quite a commonsense document.
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