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How many agencies does it take to change a light bulb?

by Angela Hart

Halfway through October, my family had the experience of a planned power outage and it led me to wonder what people generally think the provisions are in New Zealand for medically dependent people, and if my expectations are unreasonable.

What happened was a simple planned power outage set for 11:30pm to 4:30 am on a week night, to do essential network maintenance and timed to cause minimal disturbance for most people in our neighbourhood.

We were initially informed by our electricity retailer, Powershop, in an email which said those requiring electricity for medical purposes should phone them to discuss their options. I did that, and was told that there were no options; it was out of their hands, nothing they could do, it wasn’t them it was United Networks, their supplier.

Next we got a letter in the post. Two identical ones actually, in separate envelopes. This was from Vector (who own United Networks) to tell us about the outage. The letter said to contact our health provider in case of reliance on electrically operated medical equipment.

I have a family member who needs a Bipap machine to breathe whenever she lies down. Back in the day there’d have been a tracheotomy and a ventilator. These days, with the advent of BiPap, respiratory conditions can often be managed in a less traumatic and invasive way, and life goes on without any great fuss. She isn’t medically dependent to the degree that she’d die in minutes if the BiPap machine stopped working, like this person, but there would be serious medical consequences.

So I contacted the respiratory department of the hospital responsible for our machine, explained about the planned power outage and asked if they could supply a battery for the machine. No was the answer, but you can come in to hospital for the night.

For many reasons, the thought of another night in hospital was singularly unappealing, so I continued to explore our options, from spending the night in a motel or staying up through the power cut, to hiring a generator.

I phoned two of the agencies involved in supporting us by channelling Ministry of Health funding. Manawanui in Charge, our Individualised Funding Host, told me that Vector wasn’t allowed to cut our power off (both untrue and unhelpful). Taikura Trust, our Needs Assessment and Support Co-ordination agency said the same thing and went so far as to phone Vector on our behalf. I was surprised by the stance taken by these two support agencies.

Subsequent discussions with a representative of Vector ended with an emphatic “this is not our responsibility, if there is medical dependency, responsibility lies with the medical people, we’ve given you advanced notice so that you can sort something out with them”.

From Vector’s perspective, planned outages are a fact of life, you can’t do some of the essential maintenance on live equipment, and there is no guarantee of supply. Perhaps there should be (except for unforeseeable events).  Maybe the power companies should be made responsible. I don’t know.

Phone calls continued.  I was repeatedly treated like an idiot, asked if I’d rung the power company, and surely I must have friends or family who could put us up for the night (friends and family with spare beds and wheelchair-accessible homes?).  I was told to go and see our GP (at whose expense? And what could he possibly do?).

I rang a hire company and checked out the cost of hiring an inverter generator that could run this expensive medical equipment safely. $104 - surely a lot cheaper than a night in hospital and considerably less difficult for us. I should explain that a night spent anywhere but at home involves packing, unpacking and setting up  an array of essential equipment, (twice, once there and once back home) on top of the stress and fatigue of the journey and the experience. It isn’t just throw a few clothes in a bag and go.

I contacted the Ministry for Social Development. They said they might be able to lend us money to cover the hire cost – if we could provide written proof that no one else would help – but it would have to be paid back.

I booked the inverter generator and sent a couple more emails, one of them to a CCS Disability Action policy co-ordinator. He offered to look into the issue when he had time but suggested I contact my MP. Why hadn’t I thought of that?

Well, my previous MP was Paula Bennett. My dealings with her office were unproductive. It just hadn’t occurred to me that my MP might be willing and able to help. I thought why not, can’t hurt, and sent a quick email to Phil Twyford, the incumbent for Te Atatu. Blow me down, he responded within a couple of hours and was on to it.

He spoke with management at my local DHB, they contacted me and agreed to reimburse me for the hire cost and to work with me to produce a clear plan for future outages. I haven’t yet been reimbursed or been involved in any planning with the DHB, but we all know how slowly the wheels do turn.

It was a good outcome for us, because $104 is a significant proportion of the weekly Supported Living Payment that my family member lives on, and I don’t think it is fair to expect a person on this level of income to have to pay this sort of cost for this sort of thing.   This planned power outage gave us yet another disability-related cost for which there is no provision, this time an urgent one.

It seems to me that better plans need to be in place and communicated to people. Not all medically dependent people will have to have continual electricity. People using oxygen concentrators, for example, can be supplied temporarily with small portable oxygen cylinders. But the back-up plan for medically dependent people needs to be workable, clear and known to all parties. And I don’t think taking up a hospital bed when there’s a simpler and cheaper option is sensible. What do you think?

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