Posts by Angela Hart
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Access: How many agencies does it take…, in reply to Sacha,
Because of the buck-passing, only those people with enough social capital end up getting help. All of us pay for that one way or another.
Yes, and we had quite a lot of worry until we came up with a workable solution. You don't need extra anxiety when you already have a fragile life.
There probably are not many people in our situation, but if we hadn't had the money to hire, we'd probably have spent the night sitting up. The thing is people like us are cash strapped at the best of times because the "safety net" doesn't cater for us fairly. When your income will rise significantly if and when you turn 65, there's a problem. -
Access: How many agencies does it take…, in reply to Kumara Republic,
A charitable description of Paula Bennett is that she’s Jenny Shipley with better PR.
We previously had a problem obtaining an essential piece of therapeutic equipment. Although recognised by the medical experts in the field as necessary and urgent, the Ministry of Health in its wisdom has a policy of stopping funding this sort of thing once a person turns 18. So I asked Paula's office if anything could be done. They wrote a letter to Tony Ryall and the response back from him was largely garbage, to the extent that I really wonder what the letter to him, which we never saw, actually said. Anyway he suggested we go to charity and since the need was urgent and we'd already wasted time with these people, we got out the begging bowl.
People can be very good. The company which made the equipment loaned it to us until we could pay for it, and the Freemasons provided the money.
I don't think I'm a particularly proud person but it bothers me when we are obliged to beg for survival.
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Access: How many agencies does it take…, in reply to Rosemary McDonald,
one could have reasonably expected that they would have got their collective shit together on this one.
yup, the Ministry of Health funded agencies (Manawanui and Taikura) both thought it had been sorted by obliging the power companies to do something. But they are wrong about that. I politely informed them that they are wrong, and gave them the facts, but who knows whether it will change what they tell people.
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Access: How many agencies does it take…, in reply to Lucy Telfar Barnard,
I think the DHB is extremely lucky to have had the option to pay $104 for the cost of a generator, when the average cost of a night in hospital is well over $4500.
Thanks Lucy, I didn't think it was as much as that but yes, there were three grounds on which we felt a night in hospital was not a good solution
the cost to taxpayers
the taking of a bed that someone else might need
the inconvenience/trauma -
Access: How many agencies does it take…, in reply to Moz,
I would have suggested borrowing a portable UPS (Uninterruptable Power Supply) as used for computers and important medical equipment.
Thanks Moz, I researched UPS some time back and found that we couldn't afford to purchase one. It didn't occur to me to ask the hire outfit if they have them, but it's a good thought if there's a next time. I don't know anyone who could lend us one, they're usually needed to make sure those servers etc keep right on serving, no matter what.
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Access: How many agencies does it take…, in reply to ,
The piece of medical kit should have a back up battery built into it.
Specialised batteries are available but not built in. The DHB responsible for respiratory equipment like ours in Auckland does not purchase the batteries. Their policy is to offer to provide a letter for the patient to take with their begging bowl to the Ministry of Social Development who may provide some funding which most probably would have to be paid back.
We decided not to go down that path because the batteries are likely to be specific to the model of machine. You get one sorted and then the hospital changes your machine and the battery is useless to you. All you can do is donate it to the hospital and go through the rigmarole again.Our back up plan for emergency unplanned power cuts is to get our person out of bed and sit up until the power comes back. Her breathing is good enough when sitting, at the moment. That plan relies on me hearing the machine alarm when the power goes off. Our model of machine has changed recently and the new alarm is very brief, so this is a concern.
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Access: Social media, disability…, in reply to Hilary Stace,
Has a reason been given for scrapping the Disability Survey and extending the data collection interval to ten years? It's difficult to see any justification for this unless a better, much better system is rapidly put in place to make up for the loss. Does the new group have the resources to do that?
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Access: Social media, disability…, in reply to Sacha,
I have little confidence in the nous of those making the decisions on our behalf. Again.
We must be a fearsomely scary lot since this decision making group has been so heavily weighted to counter-balance our 3? representative voices. Sam of CCS is good value, I don't know the others. I don't know whether it's more frustrating being one of the peasants or being in such a group but not heard.
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Speaker: Are there opportunities within…, in reply to Rosemary McDonald,
A well covered and fully breastfed child. The bollocking I got from the charge nurse for having an obese baby…I’ll never forget it.
I don't believe it's possible to have an obese and fully breastfed baby, that charge nurse had to've been on the wrong track there.
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The government has announced that it will drop the 2018 disability survey.
http://www.scoop.co.nz/stories/PO1511/S00017/government-plan-on-data-could-make-disabled-people-invisible.htm
Make the problems invisible and they'll go away?