Beneficiary for life: the joys of permanent disability in present day NZ

This Guest Post is by Kay, a long time commenter at The Standard. 

Living with any sort of disability full time isn’t exactly what any of us sign up for. But these days, for many New Zealanders a disability not only entails managing the actual condition, it means having to contend with ever-increasing hostility from WINZ, politicians and most devastatingly, from our fellow citizens. On top of that, increasing cuts to the public health system and access to necessary ongoing treatment and care, and more recently access to suitable housing. Not to forget the ceaseless benefit cuts.

I’m writing this using my own experiences but am pretty certain I’m speaking for many.

I have very uncontrolled tonic-clonic epilepsy (grand mal in the old terminology).  I’m in the small sub-set of people with epilepsy who are simply not able to hold down regular paid employment due to the frequency, nature and complications of my seizures and medication. I’d like to emphasise that a lot of people with epilepsy are quite capable of working, employers take note. In my case, hell, I wouldn’t employ me so not holding any grudges there. I’ve had a go many times and it never ends well.

So for official (read: WINZ) purposes I’m disabled, ie unable to regularly work at least 15 hrs a week. I’ve been on Invalids Benefit since 1990- just in time to have it slashed by a certain R Richardson- and now SLP. There’s been some part-time work along the way but I’ve always stayed on at least the core benefit. I’m one of the lucky ones, as in I can pay the rent and bills and aren’t starving-yet. But I’ve also been bailed out by a family member more times than I can remember now, and without her I would be in serious shit.

To anyone who’s still deluded about benefit increases (and I remind you again that the Natz did NOT increase benefit rates across the board contrary to propaganda), read this.

Between 1994 and January this year there was only a $10 difference in my rent. I know, bloody lucky there. In that time I was getting  Invalids, Accommodation, Disability and a bit of Special benefit. Even allowing for subtle ups and downs of the supplement benefits, in 17 years my TOTAL benefit increased by a grand total of $83/week. It’s effectively been frozen for 25 years so in real terms going backwards all the time.

This is bad enough for anyone who has to meet just everyday expenses. Being long term disabled can get bloody expensive, with medications (@$5 per item plus any unfunded drugs); physiotherapy and other types of therapy- not necessarily available through the public system; taxis to get around because physically unable to take buses or drive; special diets; keeping warm etc etc. You get the idea?

I remember back in the 90s, even after the brutal cuts being quite able to get the treatment I needed, taxies when I needed to use them, pay the bills and even have a bit of money left over. But then, power was 1/3 the price, medication was still free…

Despite my earlier statement re paying the bills – well I can, but I’m part of the heat/eat/treat deciders and frequently juggle resources. I’ve stopped taking an unfunded drug based on cost and like so many others am terrified of turning on the heater. I’ve also been left with permanent injuries from seizures as a result of not being able to pay for the physio treatment. At $30-35 surcharge even on ACC it’s just not possible. That’s just everyday reality. One physio treatment or eat for a week? (yes it’s possible to eat for a week on $35, less even. Hint: always keep well stocked up with brown rice, tinned beans, tinned chopped tomatoes and frozen veg. It can get a bit boring but nutritious and filling).

I don’t remember a lot about the beneficiary bashing going on in the 90s, only the cuts, and taking part in the massive protest in Queen Street. Maybe it’s a good thing I’ve got a lot of memory problems at times! Unfortunately the last 9 years are still crystal clear. Coming to the realisation that so many of my fellow citizens genuinely despise my existence because I’m on a benefit, never mind the reason I need to be. Or the reason ANYONE needs to be.

In a way it’s not even what the politicians were saying- I’m more angry at the MSM for giving them the platform. The media have always been happy to go along with a good bene bash – it’s great click bait and they don’t even have to do any journalism- just print the government press release, no questions asked. I was pretty stupid for a few years, reading the Trade me and Stuff comments. Some are obvious trolls, but a lot aren’t.

The divide and rule campaign has been incredibly successful, I’ll give them that.

Until a few years ago I wouldn’t have considered treating people on SLP as a separate group because it wasn’t really necessary. We were actually treated ok for the most, this current nightmare began in 2009. It’s no coincidence WINZ has become a seizure trigger for me (never was before 2009) and I’ve had 5 hospitalisations so far as a direct result of run-ins with them. Chronic illness requires minimising stress and they are not helping the situation for anyone. It would be really interesting to work out just how much their behaviour has cost the public hospital system. I’m currently going without money I know I’m entitled to because it’s not medically safe for me to go anywhere near them.

Disabled/ill on SLP long term do need a separate system within WINZ as Super does, including not being forced to queue for ages at reception when you’re wobbly or injured because if you don’t hand in the paperwork your TAS won’t get renewed and you can’t pay the rent…

Welcome to our world.

Note: Special Benefit and TAS (Temporary Additional Support) are weekly supplementary benefits available to beneficiaries experiencing financial hardship. TAS replaced Special Benefit in 2003.

 

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