Up Front by Emma Hart

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Up Front: Another Brick in the Wall

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  • giovanni tiso, in reply to Sacha,

    At its root, we need to regard disabled people as worthwhile. Which won't happen on its own.

    We need to regard people as worthwhile. Which is even less likely to happen on its own.

    Wellington • Since Jun 2007 • 7473 posts Report Reply

  • Lilith __, in reply to giovanni tiso,

    We need to regard people as worthwhile.

    Giovanni, that blog post of yours is remarkable. I'm sorry you had occasion to write it, but glad you put it out there so eloquently and forcefully.

    Dunedin • Since Jul 2010 • 3887 posts Report Reply

  • giovanni tiso,

    Thank you Lilith. I meant it yesterday when I said I haven't been able to reread it yet. Got halfway through once. The things they make you do (or, worse, do to your child) just make the anger well up every time.

    On the sunny side, our whole school is learning sign. That's how having a child who is different can benefit an entire community.

    Wellington • Since Jun 2007 • 7473 posts Report Reply

  • Hilary Stace,

    The Child and the Adult Disability Allowances are quite different things. For a start, the CDA, if you can get it, is not means tested. The adult one is.

    Wgtn • Since Jun 2008 • 3189 posts Report Reply

  • Lilith __, in reply to Hilary Stace,

    The Child and the Adult Disability Allowances are quite different things.

    No-one's disputing that, are they? But surely both are subject to arbitrary obstacles, cuts, and hierarchies of "need".

    Dunedin • Since Jul 2010 • 3887 posts Report Reply

  • Dave Howell, in reply to Russell Brown,

    I think a lot about families not in as strong a position to claim their rights as we were.

    My father volunteered for Citizens Advice Bureau for years after he retired. He spent 99% of his time fighting bits of the government on behalf of those who couldn't advocate for themselves. He swears blind that his value was entirely in being a rich old white guy who believed at a gut level that The System was there for his personal benefit, and could convey the depth of his moral outrage when it didn't work that way for everyone else too.

    Auckland • Since Jun 2008 • 16 posts Report Reply

  • Hilary Stace, in reply to Lilith __,

    Just another example of the complexity and fragmentation of the system. Same name different rules. Just wait till we get two lots of Supported Living when the benefit system is 'reformed' in July. One is the the new name for the Invalids benefit and the other is a MoH programme. (And I hate to think how many beneficiaries details will be 'lost' or payments botched in the transition to the new benefit regime.)

    Wgtn • Since Jun 2008 • 3189 posts Report Reply

  • Will de Cleene,

    Thank you, Emma, for bringing me to a new plateau of apoplectic rage. I've been continuing research on the history of Deaf education in NZ, and your epistle shows that, like the export sector, NZ's disability support is still living in the 1880's.

    I had the displeasure of having a WINZ pet doctor inspect me in Auckland a few years ago to prove my incapacity (Dr Hoadley, I presume). I didn't have my audiogram on me. Thankfully, I wasn't presumed to be wearing fake hearing aids.

    Just had a letter from WINZ requiring another doctor examination. This time, they thoughtfully included an email address for Deaf to use. I emailled them asking for the Pet Doctor WINZ to inspect me, and WINZ promptly lost the email. If I hadn't cynically walked into WINZ to double-check, I'd probably have lost my rent money.

    Raumati • Since Jul 2011 • 107 posts Report Reply

  • Bart Janssen,

    Reading these just makes you shake your head in disbelief. The constant driver for the system appears to be to save money. Somebody says "well if we do it this way then fewer people qualify and we will save money". The cynic in me would then say "and the manager concerned will meet his/her KPIs and get their bonus".

    But if the point was to save money then why bother at all. Anyone who can't keep up fails and should get discarded. But evidence has shown that supporting people with disabilities allows them to contribute and society as a whole benefits. Supporting kids so they can learn as much as they possibly can pays off for the country --- even if it costs that particular government department more.

    And thering lies the problem with cutting government expenditure the way this govt has done (and previous govts before them). The cost is long term failure of segments of society at enormous cost to society as a whole. Saving pennies at the expense of pounds.

    What makes me most angry is that it always hurts the rich less and the poor more. So not only is it stupid, it's unfair and stupid.

    Auckland • Since Nov 2006 • 4449 posts Report Reply

  • giovanni tiso, in reply to Bart Janssen,

    Saving pennies at the expense of pounds.

    I'm not even sure you save pennies. I have the strongest suspicion that if we were to reverse the philosophy of our disability services - from the withdrawal of resources to the provision of resources - we'd waste a lot less money and spend no more than we are spending.

    Wellington • Since Jun 2007 • 7473 posts Report Reply

  • Emma Hart, in reply to giovanni tiso,

    I have the strongest suspicion that if we were to reverse the philosophy of our disability services - from the withdrawal of resources to the provision of resources - we'd waste a lot less money and spend no more than we are spending.

    Certainly a huge amount of money is just wasted in persecutorial* practices. How much money and time would be saved by just never making people with permanent disabilities reapply for their entitlements? By assuming GPs aren't fraudulent bastards and never making anyone have a designated doctor visit? Like Lilith, we had the experience of having our benefit cut for absolutely no reason, and having it reinstated when we complained. That was someone's job.

    *It's a word now.

    Christchurch • Since Nov 2006 • 4650 posts Report Reply

  • Lilith __, in reply to giovanni tiso,

    I’m not even sure you save pennies. I have the strongest suspicion that if we were to reverse the philosophy of our disability services – from the withdrawal of resources to the provision of resources – we’d waste a lot less money and spend no more than we are spending.

    The admin time spent on finely-dissecting applications must be simply unbelievable.

    To give the DA as example (only thing I have direct experience of), not only do I have to provide a receipt for every single occurrence of every cost, but at least 2 levels of WINZ staff have to itemise and check them. All for a few dollars more or less which I may or may not have spent.

    And when they decide to ditch my DA, as they do every few years, I have to reapply and be reinstated. Or they give me the wrong amount and I have to appeal, and my appeal has to be processed and then my arrears calculated.

    All of this admin time is being paid for in relation to me and my disability but serves only to hamper and distress me, not to help me or make me more able .

    Public money is essentially being spent harassing disabled people and our families.

    Dunedin • Since Jul 2010 • 3887 posts Report Reply

  • giovanni tiso,

    My idea is pretty simple. You take a child, any child. I don't care if they have an officially recognised disability. You enrol them into their school and the teachers and the family assess what obstacles there are, if any, for that child to fully participate in the curriculum. It may be nothing, or it may be the need for ESL tuition, or there may be an environmental factor, or the child may have specific learning needs that require a speech therapist or a teaching assistant and so forth. Then you apply for that support, and the standard response from the ministry has to be that they give it to you, unless they can demonstrate that the support is not needed or is already provided. Put the onus on them, and make it hard and expensive for them to say no.

    Wellington • Since Jun 2007 • 7473 posts Report Reply

  • Hilary Stace,

    There has been a movement, led by disabled people in the sector, to remove the levels of gatekeeping and replace it with a simple geographic system of Local Area Coordination, as used in other parts of the world. A coordinator works alongside all the disabled people in that area who come to the coordinator for help and guides them through the mazes and finds appropriate services and support specifically for that person. The local area coordinator becomes a bit of an expert on services available in the the local region and various impairment conditions and person centred facilitation for each person and their family. Apparently there is a great deal of job satisfaction and they stay in the job a long time and people feel supported, and all these nice things means money saved over time.

    However, when NZ had a go at it, they decided to put the LAC role on top of all the other gatekeeper and fragmented roles, rather than clearing them out and starting again. It is apparently not working very well in the demonstration area (Western Bay of Plenty) and getting expensive. (It is called the New Model if anyone wants to look it up on the MoH website).

    An even better system would be to have a local area coordinator who worked with and alongside the whole 24 hour person, which would mean coordination across education as well as home, employment and community. But far too simple an idea.

    Wgtn • Since Jun 2008 • 3189 posts Report Reply

  • giovanni tiso,

    (Sometimes I like to tell people in Group Special Education that back home you can self-certify that your child has an intellectual disability and receive automatic support, just to see how they react. You can write that your child is autistic on the back of a napkin, I'll say for instance. Their response varies, but basically always seems to uncover the bizarre and completely unfounded assumption that there a lot of people out there who would fake an intellectual disability in their children just so they can get a teacher aide.)

    But far too simple an idea.

    Hah! Yes.

    Wellington • Since Jun 2007 • 7473 posts Report Reply

  • Sacha, in reply to Hilary Stace,

    A coordinator works alongside all the disabled people in that area who come to the coordinator for help and guides them through the mazes and finds appropriate services and support specifically for that person.

    Not working here because local coordinators have been directed to first load the person's family and friends with unfunded demand before considering any services that might require public money. Again, the rationing mindset undermining a good system in theory.

    Ak • Since May 2008 • 19667 posts Report Reply

  • Sacha, in reply to giovanni tiso,

    the bizarre and completely unfounded assumption that there a lot of people out there who would fake an intellectual disability

    Because disability is so cool. I know. Statistics NZ have kept a straight face while claiming that heaps of people who aren't actually disabled said they were in the 2001 and 2006 Censuses. Seriously.

    Ak • Since May 2008 • 19667 posts Report Reply

  • Sacha, in reply to giovanni tiso,

    What you said is exactly what I mean when talking about meeting people's needs and removing barriers. The medical profession should not be the gatekeepers of that.

    Ak • Since May 2008 • 19667 posts Report Reply

  • giovanni tiso, in reply to Sacha,

    The medical profession should not be the gatekeepers of that.

    Neither should ministry of education accountants, or NZQA bureaucrats.

    Wellington • Since Jun 2007 • 7473 posts Report Reply

  • Hilary Stace, in reply to giovanni tiso,

    Or NASC assessors.

    Wgtn • Since Jun 2008 • 3189 posts Report Reply

  • Sacha,

    There will never be unlimited public budgets. How will prioritisation happen?

    Ak • Since May 2008 • 19667 posts Report Reply

  • Kumara Republic,

    I was lucky enough not to have either a physical or mental disability, but all the same, a social disability makes for an experience straight out of ’Why Nerds Are Unpopular” – public and private alike. My folks knew I had some kind of social disability, but had no idea how to deal with it.

    I got sent to private college – supposedly Ivy League-grade – for the entirety of my secondary ed, under the belief that smaller classes would be the ticket. It wasn’t to be, given the snob yobs and Paul Henry wannabes I had to deal with, and the biggest lesson I learned from that experience was that money doesn’t always buy intellect or civility. My report cards resisted all attempts to lift them, despite my folks putting me through what could be described as the Japanese cram school approach. I also have the dubious (or not) honour of being the only varsity dropout in the family.

    In the end my folks blamed Tomorrow’s Schools for what I went through, though they denied autism had anything to do with it when I asked them. I eventually took the Baron-Cohen autism test several times, and got similar results saying the same thing – that I might be a borderline autistic.

    The last word goes to George Carlin: "Isn’t the pressure to succeed placed on kids for the sake of the parents just a sophisticated form of child abuse?"

    The southernmost capital … • Since Nov 2006 • 5414 posts Report Reply

  • giovanni tiso, in reply to Sacha,

    There will never be unlimited public budgets. How will prioritisation happen?

    if you can show me how the right to education of one child is greater than the right to education of another child, then we'll prioritise between them. Otherwise, our priority may just have to be to build fewer motorways.

    Wellington • Since Jun 2007 • 7473 posts Report Reply

  • Kumara Republic, in reply to giovanni tiso,

    Otherwise, our priority may just have to be to build fewer motorways.

    And fewer private school bailouts.

    The southernmost capital … • Since Nov 2006 • 5414 posts Report Reply

  • Sacha, in reply to giovanni tiso,

    I'd prefer the decision is made as you say at that higher level - guess that's by parliament via annual Budget processes. The problem would then be ensuring stability over time as ruling parties change and bring different levels of commitment to rights or other ways of understanding the world.

    Ak • Since May 2008 • 19667 posts Report Reply

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