Up Front by Emma Hart

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Up Front: Another Brick in the Wall

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  • Lucy Stewart,

    There are increased requirements for schools to provide psychometric and in some cases intelligence testing (yes, really, next it'll be polygraphs) to back applications.

    If I recall correctly, my high-functioning autistic brother-in-law had to take a test showing an IQ below 90 to qualify for a teacher aide. Because all those average-intelligence-or-above autistic spectrum people are soaking up our precious resources, amirite?

    Wellington • Since Nov 2006 • 2105 posts Report Reply

  • Hilary Stace,

    Thanks Emma. I was told recently by someone high up that there is no 'entitlement' to the CDA. Everything now is to do with how clever people are at knowing about and meeting 'eligibility' requirements, which like everything else in Disability (tried accessing a NASC lately and quibbling over IQ points?) are being interpreted more and more narrowly.

    So much for the social model of disability and the state and society's role in the removal of barriers to participation of people with impairments, which NZ signed up to with ratification of the UN Convention on the Rights of Disabilities, and the earlier NZ Disability Strategy..

    I have a colleague who has just submitted her PhD thesis on young Maori deaf children and their families. It has some wonderful case studies. But these families' battles will go way past childhood.

    Wgtn • Since Jun 2008 • 3189 posts Report Reply

  • Russell Brown, in reply to Lucy Stewart,

    If I recall correctly, my high-functioning autistic brother-in-law had to take a test showing an IQ below 90 to qualify for a teacher aide.

    Seriously? That's insane.

    The system completely failed our younger son, but his brother was fortunate enough to get ORRS funding (on written appeal from his highly-literate parents) shortly after the scheme began. That meant teacher-aides right through his school years -- whose time we were happy to share with kids who weren't so fortunate.

    I'm shocked and dumbfounded by what Emma describes here.

    Auckland • Since Nov 2006 • 22724 posts Report Reply

  • giovanni tiso,

    "There's been no change of criteria, but what she's seeing is that it's becoming a lot harder to get."

    The classic doublespeak logic of disability services. It's like the ORS scheme: we'll take all children who fit our wonderfully inclusive criteria of need, but not above 7000. How will we manage to cap this number without failing people who meet the criteria? Don't worry. We have ways.

    Wellington • Since Jun 2007 • 7473 posts Report Reply

  • Hilary Stace,

    Lucy, no impairment group is soaking up resources. Students with Aspergers or autism are among those least likely to get support either from Education or Health (in fact virtually nothing from Health unless you can prove on particular standardised tests underaken by preferred psychologists that the IQ is less than 70 - autism is not in itself an eligible condition) .

    There is just not enough resourcing or understanding for properly supporting many disabled children, young people and adults to 'achieve their potential' (to use a neoliberal term) or fully participate in citizenship.

    Wgtn • Since Jun 2008 • 3189 posts Report Reply

  • Emma Hart, in reply to Hilary Stace,

    Lucy, no impairment group is soaking up resources.

    Lucy was being sarcastic.

    What she describes is very reminiscent of our experience of trying (eventually unsuccessfully) to retain our daughter's itinerant hours when she was at primary school. We would get together with her teachers and her facilitator and make her out to be dumber than she was. The help she got let her catch up, so it was taken away, at which point, apparently astonishingly, she fell behind.

    She's a teen now and it is simply far too demeaning to her to adopt these strategies.

    Christchurch • Since Nov 2006 • 4650 posts Report Reply

  • giovanni tiso, in reply to Hilary Stace,

    There is just not enough resourcing or understanding

    There is plenty of understanding, which actually makes things worse. Nothing like the awareness that the people you are dealing with know exactly how much they are hurting you. The perversion is the capping of the resources. We don't set a limit of how many broken bones people can have - the hospital system will set them all - or on the number of cancers people can have. We also require that public buildings be physically accessible. Yet we cap the number of children who have full access to education.

    Wellington • Since Jun 2007 • 7473 posts Report Reply

  • BenWilson, in reply to Hilary Stace,

    Everything now is to do with how clever people are at knowing about and meeting ‘eligibility’ requirements, which like everything else in Disability (tried accessing a NASC lately and quibbling over IQ points?) are being interpreted more and more narrowly

    Word. I was extremely fortunate with my son, in that my dad worked with disabled children of various kinds, and when the slightest window of opportunity opened for an ACC claim, he basically nagged me into making a real effort into following it up. Most people would not have realized the significance of the opportunity like that. To him, as someone who worked directly with a very expensive part of the operation, getting kids technical/IT resources, he was patently aware of the vast gulf of difference that exists between people getting support from the ministry and people also getting some from ACC.

    Also, when the assessment came, it's one of the few times that I've really thanked providence for the gift of intelligence. It could so easily have been blown, by not knowing how to appeal to the assessor, how to put the case that an accident is likely to have occurred. Indeed, in the greatest of ironies, none of the doctors in NICU even considered the possibility that it was an accident until I pointed out that the bruising on my son's head from the ventouse was in the exact same place as the bleed discovered by MRI. Whether or not that was the cause, it was enough that it was a credible cause, and it had to be stressed at the assessment, and it had to be in the doctor's reports to even be considered.

    Gotta go, but more to say on this.

    Auckland • Since Nov 2006 • 10629 posts Report Reply

  • Brent Jackson,

    Emma wrote :

    Introduce Unit Standard 26625 as compulsory, so hearing-impaired teens have to pass “actively participate in spoken interactions” to get NCEA Level 1 Literacy?

    This can be done in any of our 3 official languages, can't it ? Using Sign Language to talk must be considered a "spoken interaction", surely ?

    Auckland • Since Nov 2006 • 614 posts Report Reply

  • Hilary Stace,

    Emma, I know Lucy was being sarcastic but it is a widely held but false perception out there in the sector, that another group is getting something that 'we' aren't. No one is.

    Wgtn • Since Jun 2008 • 3189 posts Report Reply

  • Graeme Edgeler, in reply to Brent Jackson,

    This can be done in any of our 3 official languages, can't it ?

    No. Not Maori. English and NZSL, however, yes. Explicitly so. Multiple times.

    Wellington, New Zealand • Since Nov 2006 • 3202 posts Report Reply

  • Emma Hart, in reply to Brent Jackson,

    Using Sign Language to talk must be considered a "spoken interaction", surely ?

    After the requirement was brought in, teachers of the Deaf battled hard and eventually successfully for students to be allowed to fulfill it in NZSL, but only if that was their first language. So it is, thankfully, sorted for Deaf kids. For those in between, however, for whom spoken English is their primary means of communication but whose speech is not clear enough to pass the standard, the problem remains.

    Christchurch • Since Nov 2006 • 4650 posts Report Reply

  • Hilary Stace,

    And ring fencing of funding goes back to the 1990s when Jenny Shipley/Ruth Richardson and Lockwood Smith were in charge of these portfolios. Later the philosophy changed with the NZ Disability Strategy etc but the mechanisms didn't.

    So we have social model theory but the narrowest of medical model operational policies abetted by neo-liberal ideas of disability as personal fault/defect, plus few people in the system with any understanding of where this situation has come from, which all adds up to chaos and a great deal of unmet need and injustice.

    This story from the Press about two homeless autistic brothers will probably resonate with many.http://www.stuff.co.nz/national/8535218/Plea-to-landlords-to-take-in-brothers

    Wgtn • Since Jun 2008 • 3189 posts Report Reply

  • Peter Martin,

    Timely post Emma. We visit the nice Lady from the Ministry tomorrow for our first meeting on transition from primary to intermediate school. No doubt it will be the usual labyrinth . ;)

    While I confess to having little or no understanding of how your daughter's disability affects her cognitively, there is more than one way to get her through those literacy credits to achieve Level 1 NCEA.


    The Literacy Unit Standards do indeed require some kind of interaction or conversation but students only need to use these if they can't get 10 Literacy credits through the Achievement Standard pathway. The standards you are referring to are part of the second Literacy pathway for youngsters to get NCEA Level 1. Kids can get Level 1 Literacy through Achievement standards from across the curriculum now and not just in English. If they're doing an Achievement Standard course they need ten credits in Achievement Standards that are tagged for literacy - so that might be a Geography AS or a Science one.


    The bulk of our kids in NZ secondary schools will be getting Literacy through the Achievement Standards. So if a youngster has has some learning difficulties or cannot get up in front of a class or hold a conversation, it doesn't necessarily end there for them. If a student is still able to write a report or study a short story and discuss it in writing in an external exam or do an Earth Science topic as an internal in their science class they can still clock up the required literacy standards throughout the year.


    The subject of English is no longer the gatekeeper of literacy and you'd be hoping that her teachers across the curriculum could be looking at standards she could do that get her the required literacy credits without the stress of speaking or conversing.

    I am not an expert on this and am grateful for the help I received in posting this and I hope it helps allay some of the stress for a while.

    Dunedin • Since Nov 2006 • 187 posts Report Reply

  • Sacha, in reply to Brent Jackson,

    Using Sign Language to talk must be considered a "spoken interaction", surely ?

    Yes, call their bluff, the feckers.

    (Ah, saw later replies. As you were.)

    Ak • Since May 2008 • 19667 posts Report Reply

  • Sacha, in reply to Hilary Stace,

    it is a widely held but false perception out there in the sector, that another group is getting something that 'we' aren't.

    That fragmentation prevents people achieving any critical mass in influencing change. Other disadvantaged parts of society seem to have heeded that lesson.

    Ak • Since May 2008 • 19667 posts Report Reply

  • Sacha, in reply to giovanni tiso,

    The rationing of crucial resources is unavoidably wrong, unfair and sub-human. However,

    We don't set a limit of how many broken bones people can have - the hospital system will set them all - or on the number of cancers people can have.

    They're called waiting lists - and private medical insurance. Most of the public are just not aware how much the public health system has been put into rationing mode over the last few years.

    We also require that public buildings be physically accessible.

    Almost inhaled my coffee. If only.

    Ak • Since May 2008 • 19667 posts Report Reply

  • Emma Hart, in reply to Peter Martin,

    While I confess to having little or no understanding of how your daughter's disability affects her cognitively, there is more than one way to get her through those literacy credits to achieve Level 1 NCEA.

    Yeah, as I noted, her teacher was on to it enough to ensure that our daughter started Level 1 a year early, under the old requirements, so she could finish it under them as well. They did this for as many kids in the unit as could possibly manage it, regardless of age. And my son has got all his literacy requirements in subjects other than English.

    The system can be gamed. It shouldn't have to be. Not all parents and teachers have the nous or the resources to do it.

    I should note that my daughter doesn't actually require SACs. She gets assistance in-class (by, yes, banding special-needs kids together and all going in on a teacher-aide), but the SAC regime doesn't actually affect us personally. That doesn't stop me being absolutely filthy on it.

    Christchurch • Since Nov 2006 • 4650 posts Report Reply

  • Sacha, in reply to Emma Hart,

    far too demeaning

    Always found that sad. Highlights the constant tension Hilary mentions between a state-sanctioned theory about capability but an actual system that insists on amping up weakness to qualify for resources and opportunities. Utterly perverse, inhuman and wasteful.

    If the resources used to maintain a system that asumes everyone will rip it off were instead put into actual supports and removing barriers, there might be enough to go around.

    Ak • Since May 2008 • 19667 posts Report Reply

  • Russell Brown, in reply to BenWilson,

    Also, when the assessment came, it’s one of the few times that I’ve really thanked providence for the gift of intelligence. It could so easily have been blown, by not knowing how to appeal to the assessor, how to put the case that an accident is likely to have occurred.

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

    Auckland • Since Nov 2006 • 22724 posts Report Reply

  • Lilith __,

    If I can digress slightly into the adult DA, I've had it all my adult life, except for when changes in policy meant I couldn't get it. I think it's seen as an easy target when WINZ is cost-cutting, because no one will starve without it. They'll just suffer more than they were before, and that's largely invisible to society.

    A couple of years ago I got a letter saying my DA was being reduced to $12/wk, "because my circumstances had changed". The only circumstance that had changed was a new regional policy at WINZ. So I asked my doc to write to them, And they put it up by $12. I asked him to write again , and it went up by another $12.

    At my next annual review the case manager said, "but that's crazy, you should be getting the maximum!" and put it back up, with a flick of the wrist.

    I understand that managers are sometimes required to make savings for the department as part of their employment conditions. so they go around cutting individuals' entitlements unless there is active protest or resistance.

    And my doctor said he was getting an increasing number of phonecalls from WINZ questioning "just how sick/disabled is this person?". The calls would come from the regional office from a person who'd would never met any of the clients whose quality-of-life they were deciding on.

    Sorry, I don't mean this to be a derail. Just how all of this is so ass-backwards.

    Imagine if we could start from a person's needs, and how they could be best supported to realise their full potential. Instead of "how little support can we get away with?"

    Dunedin • Since Jul 2010 • 3887 posts Report Reply

  • giovanni tiso, in reply to Sacha,

    Almost inhaled my coffee. If only.

    Yeah, I know, it's thorny. Put it this way: schools have to be. So you can access the building. Not necessarily access education however.

    They're called waiting lists - and private medical insurance. Most of the public are just not aware how much the public health system has been put into rationing mode over the last few years.

    We try to contain overall costs. And yes, there are waiting lists. But not outright denial of essential services. Break a leg every Sunday morning playing rugby, they'll fix it every time.

    Wellington • Since Jun 2007 • 7473 posts Report Reply

  • Russell Brown, in reply to Lilith __,

    And my doctor said he was getting an increasing number of phonecalls from WINZ questioning “just how sick/disabled is this person?”. The calls would come from the regional office from a person who’d would never met any of the clients whose quality-of-life they were deciding on.

    Try going to one of their pet doctors for an assessment for your kid. Someone who's never seen your child before will spend 15 minutes asking cursory questions before declaring they're not disabled enough.

    Auckland • Since Nov 2006 • 22724 posts Report Reply

  • Sacha, in reply to Lilith __,

    Imagine if we could start from a person's needs, and how they could be best supported to realise their full potential. Instead of "how little support can we get away with?"

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

    Ak • Since May 2008 • 19667 posts Report Reply

  • oga, in reply to Russell Brown,

    I've never actually been able to get a disability allowance or the disability benefit. Why? Because I am a large fit young (well, if you count being in your late 30s young) man who just happens to be profoundly deaf. It doesn't matter that I couldn't get work and that I'd like to study while being unemployed, surely I must be able to get casual labour on a building site or be a taxi driver (with four tertiary qualifications), while friends with far more useful hearing (telephone users, even!) were allowed to get the disability benefit because they had a doctor on their side and a WINZ case worker who loved them. The last time I even asked for the form, the WINZ receptionist actually told me to FUCK OFF. In these words. And don't let me get started on the annual doctor's visit to prove that I am profoundly deaf (what part of permanent disability do WINZ not understand? Permanent means IT CAN NOT CHANGE and if anything gets WORSE). And then I look at Blind, with their non-means tested benefits and it is just so grossly inequal across the sector.

    Auckland • Since Nov 2006 • 47 posts Report Reply

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