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.

Wow. This is one sweet card.

If you’d rather not hear me ramble about how I want to lobby our Government to get one of these up and running, cut to the chase and visit the Victoria Companion Card site now.

Well, here goes. This Companion Card basically entitles anyone who relies on companion support at events to get a 2-for-1 admission ticket. So those of us whose impairments mean we need help to pay over the counter, eat food/drink, transfer to seats/bathroom stuff, or anything else, get a free companion ticket to heaps of events. Sport, music, theatre and more.

I think this is an absolutely fantastic initiative. What’s really great is that the Card is targeted. You can’t get it “just coz you have a disability”. You have to have a genuine dependency on support people in order to qualify. Check out these stats from the last Companion Card survey:

• A large proportion of cardholders ( about 75%) said that now they have a Companion Card, they often go out to new places.
• Since having the card, cardholders had more than doubled the number of times they go out from an average of 16 outings per year to 37 outings per year.
• Half of cardholders interviewed said the card had improved their social networks.
  About 70% of cardholders said that having the card maens that more people are willing to accompany them to venues.
• 78% of cardholders said their life had changed since receiving the card. This included increased feelings of social inclusion, confidence, and dignity.

(from the Victoria Companion Card site)

These are massive stats, and something I believe our govt (central or local) would be well-placed to throw their support behind!

What about you guys? Do you see a need for this kind of thing? Is it something that would benefit you? Let me know in the comments below!

Best of all, entry is free!

Download the flyer here (PDF).

Do you want to help shape the disability support services that the Ministry of Health funds?

The Disability Support Services Group of the Ministry of Health are visiting towns and cities around the country to get feedback from disabled people and their families to help us plan and fund the disability support services that you need.

We want to hear about how services work for you and what things are most important to you. We want to ensure you are valued, included and respected and that we fund services that allow you some choice and flexibility in the way you use these supports.

Disability Support Services has run consumer fora, hui and fono over the last 4 years and the input we received at these has influenced our strategic planning and priorities. Consumer participation in planning and developing services is critical if we are to have services that meet your needs.

By working together we can achieve our vision that you can live in your home and take part in your community in the same way other New Zealanders do.

For more information email: dsdforum@moh.govt.nz, or call free phone
0800 DSD MOH – 0800 373 664.

Download the forum timetable here [PDF]

The reason for this is he is only allocated a certain amount of support funding to pay for a teacher’s aide. This is, of course, making the assumption that there is no way Edward could support himself, oh god no. In fact, the school’s principal, Mark Potter, had this to say about the whole situation:

Schools were in a “catch-22″ situation, either excluding a child because of the disability, or keeping them in class without adequate support when the child was a potential danger to themselves or others.

I’m sorry? Having a kid with Down’s Syndrome in a class without a teacher’s aide automatically becomes “a danger to themselves or others”? I think this is such an appalling attitude and does nothing but perpetrate the stereotype that disabled children and teenagers should be monitored and watched 24/7, as if they’re a ticking bomb. Surely by allowing him to interact with other kids in an inclusive environment is far more beneficial than isolating him by placing him under constant watch? What do you think?

[full story here]

The experiences of disabled fathers in New Zealand remain invisible, yet they are essential to influence policy changes which will improve the wellbeing of disabled men and their families.

To explore this area, researchers from AUT University, working alongside Diversityworks Group, are leading a study exploring disabled men’s perspectives on parenting and issues they would like addressed.

We would like to talk to men living in and around Auckland, who:

• Are 18 or over
• Live with a physical and/or sensory disability
• And have a youngest child under the age of 5

If you would like to take part, freephone 0508 BEING A DAD (0508 234 642) or flick an email to Marta Leete ( mleete@aut.ac.nz)