From the NZ Herald:

An Auckland mother and daughter have been sentenced to community detention after admitting to defrauding the Ministry of Health of carer support payments of more than $40,000.

Let me say this, for the record: Everyone bends the rules. Life is tough when you’re affected by disability, be it your own, or a family member’s. For people who receive Ministry of Health funding, life is a hell of a lot tougher than those who receive ACC payments. So it pains me to see people being treated like criminals by Government when in reality, they’re only trying to get some flexibility around what limited support is available to them.

I’ll say it again: everyone does it. Disability support funding is limited, and the constraints around it are incredibly restrictive. For many parents of children with significant disabilities, it means they are unable to work, as they spend most of their time supporting their kid. Of course they’re going to attempt to get a small amount of compensation for this work – in this case, $40,000 over 8 years, of money that they were entitled to anyway. Yet the Ministry sees fit to chase them down and slam them with 5 months home detention.

It makes me sick.

On top of this, I know for a fact they’re investigating families who have been using family members as support staff, as I blogged about the other day. This despite the High Court ruling that family members should be allowed to be paid for providing support services. The Government, of course, are appealing this.

This bullying of innocent families (who, let’s be honest, have enough on their plate) must stop. The Government is relying on the apathy, relative inertia and fear of the disabled community to make life hell for the people who deserve it least. No other group in society is so reliant on the Government from birth as people like myself who are born with a disability. We must support each other, and band together to tell whoever is behind this vendetta against good, hard-working families who are dedicated to their kids, that enough’s enough.

P.S. – The Herald ran with the headline “Fraud brings detention” – doesn’t fraud usually mean people are better off? As a good friend of mine quipped, “In this instance, it probably means they didn’t starve quite so much”.

I get a phone call this morning from IRIS, who manage my support services, and it goes like this:

IRIS: So… Looking through your latest report, it says here your support worker is your sister?

Me: Yes, is that a problem?

IRIS: Well, the Ministry have said that family members living in your home can’t be your support staff.

Me: But when I signed up for Individualised Funding, you said that it would be fine..?

IRIS: Not anymore. We can provide you with a support person until you find another one, but right now she can no longer work for you.

So what am I supposed to do, IRIS? Not get dressed in the morning? Go through the rigmarole of hunting down, interviewing, selecting and training another support person? Cancel an arrangement that’s working so well for me at the moment? Therein lies my biggest frustration, really – my support systems have never been as good as they are right now, and the Ministry want to take that away? I’m sorry, but fuck that.

I checked it out with my sister, and she tells me she’s living at her boyfriend’s for now. So I rang IRIS back to tell them the good news. My case manager tells me she’ll ask her boss if they will “accept this” and get back to me, but would I like them to send one of their staff over anyway?

No, IRIS, I wouldn’t.

This isn’t any old job. This is my life: my wellbeing, my independence, my dignity. Right now, my sister is doing an exceptional job, and she will continue to do so. Why on earth are they so hell-bent on removing what works so well?

More than anything, why do I get this uneasy feeling that I’m “in trouble”? I hate it how, as disabled people, we’re locked into these systems whereby you constantly feel like you’re in danger of breaking the rules, not that anyone really knows what the rules are. It’s the same thing if you’re on an invalids benefit, where you’re never really sure how much you can work in fear of having your benefit cut, so you don’t do anything. All these systems, rules, and other fucking people managing your life keep us in shackles, for the benefit of the bureaucrats who spend taxpayer money on fucking porn movies.

Frankly, I’m over it.