In researching this thesis I found that as diagnoses increase, more and more people are becoming familiar with the condition of autism. At a conservative estimate about 40,000 New Zealanders are on the autistic spectrum, which means that many families and communities have or know someone with autism, and may have experience of the difficulties in getting good support or services. However, most academic research relates to clinical aspects of autism, causes or interventions. This makes my PhD on autism policy unusual in that I looked at how to improve services and support for people with autism, and their families, using the premise that this is a problem for society, not just individuals.

 My research showed how fragmented and unsatisfactory New Zealand public policy is towards autism, even within the wider context of disability policy generally. Getting people with autism and their families involved in issues around policy and implementation is one possible solution. Examining autism as a ‘wicked’ policy was innovative as this concept of intractable policy problems has not been applied to the disability sector before. I examined the history of disability in New Zealand and overseas and the international development of the condition of autism as definitions and diagnostic criteria continue to evolve. For the chapteron education  I looked for voices from autistic students themselves. I also studied the 2008 New Zealand Autism Spectrum Disorder Guideline as a case study, and finished by providing visions for how things could be in the future.

There are still several gaps to fill in our knowledge about autism in New Zealand and many things we could do to start filling them. One simple  issue to tackle is statistical information. For a start we have very little hard data about incidence of autism in New Zealand , and the various agencies who work with autistic people and their families either do not record details of a diagnosis, or have differing criteria and definitions. They even have different ideas about when a child becomes an adult. Unfortunately for adults there are few public pathways to any services or support. There is much potential for more research on autism and the experience of being autistic in New Zealand,  including participatory action projects.

My interest in this topic arose from having an autistic son who is now an adult. Below is the abstract as published in the thesis.

Abstract

Autism Spectrum Disorder (ASD) diagnoses have been rising rapidly in recent years and New Zealand is just one country grappling with the policy challenges this presents. Currently, love, such as a supportive family, and luck, that appropriate services are available, are required by people with autism and their families for good outcomes, a situation that is neither equitable nor sustainable. Autism was first named as a separate condition in 1943. The concept of autism has developed significantly since then in many ways, including as the cultural identity that many autistic adults now claim. Influenced by the international disability rights movement and local activism, New Zealand policy is now based on the social model of disability, whereby society as a whole has responsibility for removing disabling barriers.

In 1997, a New Zealand mother, unable to find appropriate support at a time of crisis, killed her autistic daughter. A decade of policy work followed, leading to the 2008 publication of the New Zealand Autism Spectrum Disorder Guideline (Ministries of Health and Education, 2008) which is the first whole-of-spectrum, whole-of-life, whole-of-government, best practice approach in the world to address the extensive issues surrounding ASD. Prioritisation and initial attempts at implementation revealed new problems. The complexity, lack of simple solutions and fragmentation of autism policy indicates that this is a ‘wicked’ policy problem. To move beyond this situation requires innovative and collaborative approaches. The ‘transformative paradigm’ is a research methodology which builds on recent developments in participatory and emancipatory research, and disciplines such as disability studies. It advocates approaches based on mixed methods, social justice, ethics and partnership, so is particularly suited to examining a problem such as autism, and indicating ways forward.

There is untapped expertise among those with lived experience of autism and their families to tackle the ‘wicked’ aspects of autism, but to harness this expertise requires relationship building which addresses power imbalances and past injustices. This thesis analyses New Zealand autism policy and suggests ways this lived experience could be better respected and incorporated into policy processes, in an attempt to move past the currently required variables of love and luck.

Here is the link to the full thesis from the Victoria University Library. It is a big pdf file. Just please acknowledge if you quote from it.

http://researcharchive.vuw.ac.nz/bitstream/handle/10063/1920/thesis.pdf?sequence=2

Why is he visiting and why should New Zealanders to be vigilant about his message? The answer is that the New Zealand government is about to drive through similar welfare ‘reforms’, otherwise known as cuts, following the work of its Welfare Working Group which was appointed in 2010. The WWG reported on 22 February 2011, an hour before the destructive Christchurch earthquake. The signs weren’t good.

Many of us have been watching with horror as the welfare ‘reforms’ have been rolled out in Britain. The  justification is that there is something evil called ‘welfare dependency’ that many poor and disabled people and single parents suffer from, and which can only be cured by paid work, preferably fulltime.

Mr Duncan Smith expressed his underlying assumption for this policy – that welfare dependency leads to ‘worklessness’ (not the other way around). But I suggest there are two basic things missing in this equation: the role of the government to create jobs; and the role of the state in ensuring the dignity of all its citizens. He did not apologise for, or even acknowledge, the role of neoliberal policies under Conservative leader Margaret Thatcher which destroyed industries and millions of jobs. Yet he claimed that one million people will be lifted out of poverty by these reforms.

These assumptions are underpinned by an absolute belief in the moral good of paid work and the lack of value of any other kind of work including voluntary work or child rearing. The Tory minister said that it is very important for the child of a single mother to see his/her mother go off to paid work every day as that would normalise ‘work’ for the child. The only unresolved question, he suggested, is what age that should happen. In New Zealand proposals the child could be as young as 14 months. In Britain it is five years old.

When a member of the audience asked about creating work he replied with a sigh that he thought we had moved beyond that question. He said it is the private sector’s job to make jobs and the state’s only role is to make things easy for the private sector to do that. He claimed that the private sector had created half a million jobs in the last year but – wait for it – British people didn’t want them so they had gone to ‘immigrants’. So if the hundreds of thousands of unemployed British people are ungrateful and lazy, what does that say about disabled people?

For disabled people in Britain currently on welfare the first step out of ‘dependency’ is an assessment for ‘workfitness’ (a term that harks back to eugenics). To assess the ‘workfitness’ of disabled people, a private multinational company, Atos,  has been contracted to do a tick box computerised assessment without any contextual information such as mental health or disability history.  Depending on what an individual scores they can be placed in three categories: work fit and ineligible for even basic employment support, work fit with employment support, and not work fit (ie unfit).  It is easy to imagine how aspects of a condition such as autism are overlooked by medical questionnaires which ask questions such as can you walk, or dress yourself. There are incentives such as rewards of additional contracts for the company to push people off the welfare system, and its profits are currently at record levels.  But it seems there have been so many challenges to the insensitive and inaccurate assessments that the system can’t cope.

As well as workfit tests, there are also cuts to other aspects of the welfare system such as allowances for housing, programmes, and disability support including such things as continence supplies. There have been reported suicides, and regular reports of disabled people suffering because, for example, they can’t afford adequate housing and families unable to get supplies for their disabled children.

Mr Duncan Smith has also distorted the concept of social justice, with its implications of equity, inclusion and bottom up social policy, by using it for the name for his own right wing think tank, the Centre for Social Justice, whose purpose appears to be championing policies to inflict social injustice on the poor and powerless.

It is rare for us here to have the chance to get up so close with someone so powerful, so I listened carefully. After all, there is the equivalent of the population of NZ on welfare in Britain, out of a population of 62 million. He is a very smooth and persuasive talker, obviously clever, and had the look of someone who has been well nurtured with a comfortable life; I suppose you don’t get to be head of the Conservative Party without these attributes. So how can he justify the misery and pain his policies are so clearly causing? He is not evil and is clearly genuine concerned. One of my interests is ethical public policy*; I think that the only way powerful people can inflict such policies on other people is by seeing them as ‘other’ not fully human, or objects of scorn or laziness. Interestingly, in Britain the opponents of these policies have adopted the black triangle  – the Nazi symbol used to classify the  ’workshy’, one of their ‘othering’ labels – as their campaign symbol.

So at question time I asked Mr Duncan Smith whether it worried him that his policies might be hurting real people. He initially didn’t agree, blaming misinformation campaigns and claiming disability groups had asked for these changes, but it clearly needled him. I think this is the way to challenge those whose policies risk hurting and harming other people – as human to human. And we need to keep doing it otherwise inequality and suffering will only increase.

Alternatively,  we can always hope that politicians will actually ask real people for input into policy, and listen to the wisdom that comes from their  lived experience. But not much sign of that happening.

Then it was out into the cold again.

“The medical was an absolute joke’ http://www.guardian.co.uk/politics/2011/feb/23/government-reform-disability-benefits

Report of the Welfare Working Group http://ips.ac.nz/WelfareWorkingGroup/Index.html

Welfare Justice: the Alternative Welfare Working Group http://welfarejustice.org.nz/

The website of the British black triangle disability rights campaign http://blacktrianglecampaign.org/sample-page-2/

Disabled People Against Cuts www.dpac.uk.net

*See Stace and Sullivan (2011) ‘Can policy be ethical without consumer input?’ in Ethics and public policy: contemporary issues eds J Boston, A Bradstock and D Eng, Wellington.

http://bat-bean-beam.blogspot.com/2010/09/questions-asked.html

This is not our daughter’s story, so much so that I won’t even call her by name. It is the story of sixteen months spent battling to ensure that she have access to the same education system as everybody else. It is the story of the questions asked and the time spent waiting, of endless evaluations and constant pleading. It is one story, therefore a partial story, with no claims to representing a universal experience. But it’s not an untypical story. We’re likely, if anything, to have had it easy. It is also a story with a happy ending, however provisional, and it pays not to count on that.

The story begins in May of 2009, when steadily growing concerns about untypical patterns of behaviour and development make us approach our GP and the local kindergarten teachers, no longer to ask for their professional opinion but rather to insist for referrals. We had deferred to their expertise and initiative for too long, waiting to be told. We didn’t know at the time what we do now, namely that our child presented with textbook signs of autism according to the yet to be released national Autism Spectrum Disorder Guideline. To the extent that I hope other parents in our situation might be able to take something out of this story, it is above all this: don’t wait. Don’t labour under the illusion that, should your worries turn out to be well-founded, your child will be cared and catered for promptly. The waiting lists are appalling, and it pays to get on to them as early as you can.

The pattern of all our subsequent dealings with the public service in this area establishes itself right from the beginning: a prompt initial contact followed by a seemingly endless wait for actual support and intervention. The Ministry of Education assigns us a speech therapist who comes to our home in a matter of days for an initial assessment of the situation. She seems courteous and capable. She asks us lots of questions, and we welcome them: it feels good to talk to someone about our concerns, to get some things off our chest and receive some basic advice. But as for the response that will follow, things get more complicated. To turn the suspicion of autism into a diagnosis and access the services offered by the health authorities, we need to see the Child Development Team at our local hospital, in six to twelve months (it turns out to be twelve); while the Ministry of Education will deploy their optimistically named Early Intervention Team in approximately six months (it turns out to be nine). There is no interim provision, no half measure: so long as our daughter can tolerate being at kindergarten – and she does, at this point – it has to suffice.

So what do you do? You wait. Except you can not, in good conscience. And so you seek other public providers (more on that in a minute) and failing that, you go privately, if you can. And here comes the second piece of advice I’m prepared to give: ask your doctor to refer you to a private paediatrician, preferably one that is sensitive to the needs of families in your situation. If you don’t have the money, borrow it from relatives or friends. If the paediatrician finds that your child has special needs, they will fill out a form for a disability allowance. It’s only forty dollars a week, but it will offset the cost of the visit in a couple of months, and thereafter it will help you pay for things. You’re not going to run out of extra expenses any time soon.

That’s the easy part. Now you have to find somebody to help your child at preschool, at kindergarten and/or at home until the Early Intervention Team creaks into action. And here’s where luck begins to tell: we live in a big city, we are involved with an excellent (public) primary school, we know people, including families with children on the spectrum. Class operates for us in more ways than one: it’s not just that we can pay for the private assistance, but that we know whom and how to ask and we have certain expectations of institutions. Agencies that cite resource constraints don’t get much sympathy from us: we know that the failure of state services to provide is the product of political decisions and rarely if ever of unavoidable circumstances. Should the centre create difficulties around the placement of our support person, we’d know how to raise our voice and how to remind them of their obligations. We are not easy people to deal with. We know that you cannot afford to be.

But in no way do we beat the system. On the contrary, by seeking private help we bail it out, prolong the state of permanent crisis that never quite results in total rupture. We should be sleeping on the Minister’s doorstep. We should be organising and demanding change. But it is a hostage situation, and the hostage is our child. Thus the system enlists us, the middle class families and above, who will cough up and provide, and this will prolong the status quo for everybody else.

We know that we are privileged, yet we feel powerless. The wider social implications of our actions are incompatible with our stated goals. We have been privatised.

It has not been for want of knocking on every available door, although the public provisions around autism are notable for the staggering lack of coordination: sometimes you will be made to feel like a trailblazer, as if nobody had ever had the same needs as you. Autism New Zealand ought to be anybody’s first port of call, but even they struggle to keep up with the constant changes in personnel and criteria. So for instance we are told to approach the Needs Assessment and Service Co-ordination Service (or NASC – these people and their bloody acronyms) but discover that our daughter doesn’t qualify unless she poses severe behavioural challenges or she has been found to have a cognitive delay by the Child Development Team that at this point – remember – we’re not due to see for several more months. I speak on the phone to another agency that could be of some assistance to us, Tautoko, and I can tell that the person on the other end of the line is also trying to make me say that we struggle to cope with our child’s behaviour, but it is a box that she just doesn’t tick, at least not in the terms that are offered to me. And so the man tells me – in September of 2009 – that they will not get around to seeing her until February of 2011.

With any luck, she might be a different child by then. A more difficult one.

This last remark is not meant glibly: as the Autism Guideline plainly states, early diagnosis and support are crucial to avoid more complex, more invasive and more costly interventions later. This knowledge makes the time spent on our several waiting lists that much more distressing. But time does pass, because it’s what it’s good at: and so 2009 turns into 2010, and in spite of all those initial contacts and assessments the actual support that our child has received thus far, eight months into the process, has all been financed by us. But the good news is that nine teacher aide hours per week from the Early Intervention Team will kick in as soon as kindergarten comes back from the holiday, plus the time necessary to actually find the aide.

Along with some resolutions, 2010 brings more evaluations, more questions, and with far more of an edge to them. This is the real deal: an actual diagnosis, medium-term decisions about support entitlements that will make an enormous difference for our daughter’s access to education as she prepares to move into primary school. We have second-hand knowledge of the beast they call ORRS, but we’re due to meet it face to face. A lot will depend on the outcome.

But before we get to ORRS, we have to meet with the Child Development Team at Wellington Hospital, so they can tell us what we already know. It is a long meeting, and whilst we are used by now to discussing our daughter as if she wasn’t in the room, this time we are probed much more deeply, and expertly. There is nothing especially tactless about the interrogation, other than the unwelcoming room itself, other than the strain of having her there, for over two hours, wondering how she feels, what she does and doesn’t understand, what she will and won’t remember.

The alternative, to have determinations made without talking to us, or without seeing her, would be worse. But it’s especially difficult at times like this not to feel that your child is a problem, and that you may be at fault: for not having done enough, for having passed on the wrong genes. None of these thoughts have to be rational, let alone justified, to affect you. So while we answer the questions, many of which are unavoidably of an intimate nature, we feel that we are all being examined, the three of us, and we figure, Justine and I, that we are the fortunate ones, for we are intelligent and knowledgeable and resourceful, for we found ways and had the means to intervene. How will other families feel and fare in that room? Will they also pass muster?

One week later, when we are summoned again to the same room – this time without our daughter – they tell us out right: you’re doing all the right things, we have no recommendations for you. (They are pleased with us!) Oh, and yes, your daughter has autism. That phrase in the report is actually in block letters, and you could read a lot into that typographical choice if you were so inclined, about the need to label, its usefulness, and the fear of the label.

We share this ambivalence, although personally I prefer using the word autism than not, but when it comes to different institutions, it is a very sharply edged business. When the Ministry of Health uses the word autistic – and I’m not suggesting for a minute that it does so lightly – it doesn’t have to deal with the consequences; its job is more or less done. When the Ministry of Education is faced with the word autism, it means extensive interventions and costs and resources to be allocated over a potentially very long period of time. And so what Education does, is it discards the word, for it is unfair on the child, and besides it is a spectrum and moreover what we need to really focus on are the needs of the person, the whole person, not the label, see?

Thus we find – and even as I write this I can’t believe that we ever thought otherwise – that the entire process of the diagnosis was immaterial. The only thing that mattered all along was ORRS.

ORRS stands for Ongoing and Reviewable Resourcing Schemes, a name that was probably concocted by the same chap who came up with Needs Assessment and Service Co-ordination Service. Both denominations are elegantly deceptive, for neither the co-ordination service does any co-ordination, nor the resourcing scheme provides actual resources. Quite the contrary: the function of ORRS is to deny disabled children access to resources, therefore the right to an education. Successive governments – both Labour and National – have lied about this, telling us that the scheme wasn’t resource-based but rather needs-based, and sometimes even telling us that it was both things in the same sentence, as Dr. Cullen did in the 2008 budget:

This initiative, which is demand-driven, increases the number of students provided for by the Ongoing and Reviewable Resourcing Schemes (ORRS) from 6,700 students in 2007/08 to 6,950 students in 2008/09. (My emphasis.) 

It’s a sliding scale of need, see. And if you’re child 6,951, then it doesn’t really matter what your needs are or whether you fit the stated criteria: you miss out. The principle was captured quite beautifully by Tom Scott in this 1995 cartoon for The Evening Post sent to me by Hilary Stace. Things haven’t changed a bit.

How it works, is that each child has to compete for one of the available slots. Think of it as the competition for a job, or the tender for a contract, where you have to write the curriculum and put together the portfolio that gives you the best chances of success. Because it is a competition, it makes perfect sense to place the burden of articulating and demonstrating the level of need entirely on the applicant. So for instance if we could go through simply by waving our daughter’s autism diagnosis and its extensive supporting report, then it would be unfair on the children without a diagnosis. (And I am quoting verbatim from an intelligent and compassionate professional involved in the process to whom evidently this seemed perfectly reasonable.)

No: we have to tell our daughter’s story, again, and in even more harrowing detail. To the education system, at this time, she is a problem, and nothing else. Where am I going to find words to convey to you how much it pains us to have to go along with this? I can not. But go along with it we must, for the alternative is that she won’t receive the support that she needs, and that doesn’t bear thinking about. So, with the invaluable guidance of her early intervention teachers, we select the criterion that best fits her profile, and we start writing, pretending not to have noticed the failsafe mechanism, the clause that they could use to deny us. It might as well have been written by Joseph Heller:

This criterion is not for students who, despite major difficulties with communication and/or social behaviour, can be engaged to participate in meaningful learning in the curriculum. 

What’s ‘meaningful learning’, and who decides? Clearly what we are talking about here is not the right to an education, but to some education.

But you cannot allow yourself to think about that. There is work to do. We enlist the help of all the people whom we have employed to work with our daughter, and of her psychologist (also private), as well as her teacher aide and early intervention staff. They all write thoughtfully and truthfully, as do we. Yet it is a betrayal: none of us see this wonderful little person like that, solely for the things she cannot do, for her impairments, for her inadequacies, for her failure to be like her peers. We see potential, intelligence, passions that if nurtured and allowed to develop could lead, yes, to meaningful learning. But they don’t fit the narrative, and the narrative is the only thing that matters at this time.

It takes thirty hours on average to put together one of these applications, under the expert guidance of the lead early intervention teacher, plus the time it takes to review it. You may want to think of the resources that it entails, all this gate keeping. It’s all money that could be spent elsewhere, quite aside from the pain and the distress that it causes. But we don’t care, not now: we just need an answer. We wait.

It is at this point that the story ceases to be our story, and becomes another family’s. Who is child 6,951? How are her needs different from our daughter’s? How will she be cared for? Will her parents have to sell the house to pay for her teacher aide? Will they have to move to a poorer area, therefore to a school with even fewer resources? Or are they already there, and is that in fact why they missed out? Here’s EJ Ryan in the Victoria University of Wellington Law Review:

The overwhelming issue with the high needs categories is that the narrow criteria mean that many students are not included within them. Both the school and the parents of a child with special educational needs must provide extensive written applications for ORRS. Any assessments of the child made in support of the application are paid for by the parents. The Wylie Report noted that just under half of the current applications succeed. Particularly worrying was the fact that the number of applications that failed from low-decile schools, and from Maori and Pacific Island students, was disproportionately high. This supported an observation that the success of the application was perhaps based more on an assessment of the written application, than on an examination of a child’s needs. 

Ryan wrote this article in 2004. The Wylie report was commissioned in 2000. Tom Scott drew his cartoon in 1995. Has anything changed? It certainly doesn’t feel that way. The system still seems designed to respond to an arbitrarily low number of cases, and to favour implicitly the families that are wealthier, more articulate and capable of greater advocacy. Or, to put it more simply, it still is discriminatory and racist. For how long are we going to tolerate this?

But I’d lie if I said that our prevailing emotion was anger, or outrage: most of the time we are too tired for that. It’s only been sixteen months, but the stress of these constant negotiations has taken a steady toll. We hope that our friends understand that it’s why we don’t call as often as we used to, or why we don’t always return their messages. We are exhausted. And you will be too, as this post crawls towards its three thousandth word. I just need to make one final point.

There is an aspect that most people in our situation will mention, and it duly came up in Penny McKay’s excellent recent programme on special education for Radio New Zealand: that you are always supposed to be grateful for the support that you get. And we are, truly, I hope that everyone who has worked with our daughter knows that. But that expectation is another source of stress, and it is connected I think to the way our public institutions see us. To them, we don’t have rights, we have needs. By responding to our needs, the institutions acquire the right to appraise themselves of everything concerning our lives. Our recent dealings with NASC illustrated this quite sharply. Post-diagnosis, when we could finally access their service, it ought to have simply been a matter of lodging the Child Development Team’s report. It had the whole story, and our eligibility criteria. But no: they had to send somebody to our house, and we had to tell her the whole story, again, answer all those at times brutally intimate questions, and for what? Not to get a sensitive and tailored intervention based on that information, but to receive 71 dollars a month, twelve times a year, for one year, to help pay for some of the therapies that it is up to us to organise.

I felt, at that point, that they owned us: as I’m sure that the disabled and the unemployed and the sick are often made to feel. It’s the price you pay for having needs.

All the images except for the Tom Scott cartoon are scanned from the New Zealand Autism Spectrum Disorder Guideline.

 The act requiring the new educational standards regime was passed through all its stages in Parliament in 24 hours just before Christmas 2008. It did not go to a select committee where the public, autism advocates, and those with lived experience, could make submissions. This was unfortunate as some of us could have pointed out the negative implications for our autistic students, most of whom do not fit this ‘one size all’ approach.

 My concerns were, firstly, that our autistic students typically have strong strengths and weaknesses across curriculum areas, and limiting assessment to only two areas would give a negative and limited view of our children’s abilities. Secondly, we know that some schools only grudgingly accept our children, and they are quick to find an excuse to ask them to limit their attendance, or even leave. If these standards are to be translated into league tables, schools will not be keen on our ASD students who may not excel in the narrow curriculum areas to be reported on.

 Under the new system, children from early in primary school will be assessed against some very narrow requirements. Temple Grandin has already warned of the negative effects on autistic children of the ‘No Child Left Behind’ regime in the US, which our new regime  is based on. In her recent book As I see it (2008), she describes a parent’s frustration that in order to pass the standard, the child was denied playtimes or anything that interested her, as she did repetitive drills to learn the required material.

 English autistic savant, Daniel Tammet, has written about his own education and describes the autistic student’s typically uneven learning profile in his books Born on a Blue Day and Embracing the Wide Sky. He personally found the physical process of writing very difficult from a coordination point of view, progressing slowly and with frequent errors. Although brilliant with pure numbers, when letters or symbols were introduced into maths, as in algebra, he became confused. An additional requirement of our numeracy testing will be that students show their workings. In Embracing the Wide Sky which includes discussion on intelligence and how the mind works, Daniel describes the visual and aural patterns by which he does his mathematical and linguistic learning, and such pattern thinking is typical of autistic thinking. But it does not fit the standards-required-template. Daniel also shows that knowledge is culturally constructed and what has significance for one culture (such as the strawberries used for counting in our numerical standards requirements) may be incomprehensible to other cultures.

Reporting of these standards to parents will be on Plunket type graph, showing parents and students in a clear visual way that those below the line are already educational failures from 5 years old. How many will be on the autistic spectrum and already finding school a negative experience? That is not the way to increase engagement, participation or achievement.

Unfortunately, this focus on such a limited view of literacy and numeracy in our standards has also meant cuts in other school support. School advisors in areas such as science, art and music have been made redundant, as have many early childhood advisors. Yet these are the experts who teach the teachers about teaching and learning. We also know that libraries can be a safe place at school for our children – but now school library advisors in the National Library have been cut. And these come on top of cuts to educational lifelines for our autistic adults such as night school classes (and large areas of New Zealand will have no night classes at all from next year) and cuts to the Training Incentive Allowance whereby our autistic adults on benefits can improve their lives by access to tertiary study.

The autism sector is right to be alarmed at the cumulative effects of all these negative political changes on the ability of autistic students to achieve their acadenic potential.  The standards regime will be  implementated from the beginning of the 2010 school year. For the sake of our autistic students, we must pay attention and report what happens.

Together they have formed a research team to look at how young people with intellectual impairment like them can have more control over the transition process and resolve barriers many face in going on to work or independent living.  The statistics reveal that, compared to people without intellectual disability, people with an intellectual disability are more likely to be unemployed, have fewer qualifications, have fewer friends and live at home or with caregivers.  And there is a big gap between government policy and what actually happens.

So what can be done to address this? Their research questions include asking how young people can have more choice and control over their lives in this transition from school to post school lives.  Their focus groups include those with answers: young disabled people both at school and school leavers, famlies, educators and employers.

They have been jointly involved in research design. I asked what themes are emerging from their research as to what young disabled people want? After carefully explaining to me that there are ethical and confidential issues around their research which means they can not tell me what individual people might have said, they can reveal that some of the things the young people want are real jobs which pay proper wages, friends, to go flatting, to get married and have a family (ie the same things non-disabled young people want).  The researchers want to be valued for who they are and what they do and this, of course, includes wanting to have their research valued, to make a difference and to be paid, professional researchers. Colin is applying for funding so this can happen.

These two young people are impressive presenters on their topic and I’m sure are very skilled and polite facilitators of the focus groups.

When those with insider knowledge and lived experience conduct research it is very powerful.

Best wishes to them all.

(This was one of several papers presented at the New Zealand branch of ASID (the Association for the Study of Intellectual Disability) in Hamilton 26-27 August on how people with intellectual impairment can be central to the research process.)

Autism Spectrum Disorder

June 2009 Newsletter 

This newsletter brings together information about the progress being made to improve autism services for people in New Zealand from some of the key groups who have been involved.  It updates the information that was provided in the March 2009 newsletter. The last newsletter was structured by organisation.  This newsletter is structured by the areas where progress is being made, and references the key parts of the New Zealand Autism Spectrum Disorder Guideline (NZ ASD Guideline) that are being worked on.  This newsletter focuses on activities that are coordinated nationally.  But the NZ ASD Guideline belongs to everyone in the ASD community, and its implementation cannot rely on what is done nationally.  Indeed, any implementation is in the end done by people in their local communities and families.  If you have been involved in a project or activity that helps to implement the NZ ASD Guideline and you would like to share that experience, then please let us know.  You can contact the New Zealand Guidelines Group through asd@nzgg.org.nz.  You can use the same email address to ask questions in relation to any of the projects outlined below.

 Implementation Priorities

The Ministries of Health and Education agreed a set of priorities for the next three years of NZ ASD Guideline implementation.  They made this decision after discussions with the ASD Implementation Advisory Group, the ASD Inter-sectoral Advisory Group, and a group of senior officials from a range of government departments. The priority areas are (not in any particular order): 

1. Assessment and diagnosis
2. Support to strengthen families
3. Interventions
4. Respite
5. Coordination

The next parts of this newsletter provide updates on the projects that are underway in each of these areas. 

Assessment and Diagnosis

There are five projects currently underway in this topic area.  They are: 

1. Development of a handbook for assessment and diagnosis for education and health specialists involved in performing assessments and making diagnoses

·         Leading organisation: NZGG, supported by an expert reference group

·         Goals: a.      To provide education, health and disability practitioners with a cut-down version of the NZ ASD Guideline, targeted at them, and focused on assessment and diagnosis.  b.      To provide options for the dissemination of the handbook.  c.      To provide analysis of options available for tools that will assist the standardisation of assessments.

·         Links to NZ ASD Guideline Recommendations: All recommendations from Part One of the NZ ASD Guideline. Also 2.3.02 – 2.3.15, and the sections of Part 6 that relate to specialists, and relevant recommendations from Parts 7 and 8 relating to the involvement of Maori and Pacific carers in the assessment process.

·         Status: The handbook has been drafted.

·         When can you expect to see something from the work? The content should be completed by the end of June 2009.  It will be accompanied by a paper that provides options for the distribution of the Handbook; which should occur prior to Christmas 2009. 

2. Development of training materials for specialists in the assessment, treatment and management of ASD

·         Leading organisation:  Werry Centre, supported by an external reference group

·         Goals: to develop a training resource for specialists (paediatricians, psychiatrists, clinical psychologists & educational psychologists) in the assessment, treatment and clinical management of ASD for young people aged between 0 and 19.

·         Links to NZ ASD Guideline Recommendations: All recommendations from Parts One and Four of the NZ ASD Guideline, the sections of Part 6 that relate to specialists, and relevant recommendations from Parts 7 and 8 relating to the involvement of Maori and Pacific carers in the assessment process.

·       Status: The Specialist training package is in its final stages and currently being reviewed by the Ministries of Health and Education. Once the training package is finalised further work will be required to scope how it will be implemented (delivered).

·         When can you expect to see something from the work?  The final draft of Specialist training package is expected by the end of June 2009. An implementation plan will then be established so that the training can commence.  

3. Review/ Revision of core Needs Assessment and Service Coordination (NASC) Standards, Protocols, Guidelines and Practice Resources

·         Leading organisation:  Needs Assessment Service Coordination Association Incorporated (NASCA)

·         Goal: To enhance NASC practice through reviewing and updating its existing standards and guidelines and good practice resources

·         Links to NZ ASD Guideline Recommendations: Broadly takes into consideration all parts of the NZ ASD Guideline

·         Status: Project well underway. A review of the key NASC documents is underway.  Workshops with NASC managers occurred in May and a stakeholder workshop is planned for June.  The workshops aim to test out findings from the document review and gather feedback on issues.  Further workshops will occur in late June to provide input to the development of the final report and implementation plan

·         When can you expect to see something from the work: A final draft of the revised NASC Standards and Guidelines is due in early July 2009. 

4. ASD Specific Guideline for NASCs

·         Leading organisation:  NASCA

·         Goal: To develop a new ASD-specific Guideline for NASCs

·         Links to NZ ASD Guideline Recommendations: Part 1 (overview recommendations 1 &2) Part 2 (overview recommendations1,2,3,4,5,9,11,12)  Part 3 (overview recommendations 1,2,6 &11), Part 4 (overview recommendations 1,3,&5), Part 5 (overview recommendations 1,2,3,4,5 7,9,10,11,) and generally Part 7 and 8.

·         Status: The project has started. Peer review workshops with NASC managers occurred 21/22 May and a stakeholder workshop (with consumers and front line NASC staff) occurred on 29 May, with the aim of getting input into the design and development of the ASD-specific Guideline for NASCs.

·         When can you expect to see something from the work: Finalised ASD-specific Guideline for NASCs will be completed by the end of June 2009. 

5. Development of NASC Resources

·         Leading organisation:  NASCA

·         Goal: To develop new resources and tools to support the revised NASC Standards/ Guidelines and ASD-specific Guideline for NASCs.

·         Links to NZ ASD Guideline Recommendations: Part 1 (overview recommendations 1 &2) Part 2 (overview recommendations1,2,3,4,5,9,11,12)  Part 3 (overview recommendations 1,2,6 &11), Part 4 (overview recommendations 1,3,&5), Part 5 (overview recommendations 1,2,3,4,5 7,9,10,11,) and generally Part 7 and 8

·         Status: Project well underway. This project is working in parallel with the development of the ASD-specific Guideline for NASCs, as the resources will need to support the ASD NASC Guideline. Peer review workshops with NASC managers occurred on 21/22 May. Valuable information on existing resources was gained as well as the need for robust tools and resources to assist in ensuring that the ASD NASC Guideline is implemented. A workshop with stakeholders (consumers and front line NASC staff) occurred on the 29 May with the aim of getting input to the design and development of the ASD Resources.

·         When can you expect to see something from the work: Resources will be developed by mid July 2009. Training for NASC staff in the new NASC ASD Resources will commence in July 2009. 

Support to Strengthen Families

There are five projects currently underway in this topic area.  They are:  

1. Improving information and advisory services

·         Leading organisation:  Altogether Autism

·         Goals: To ensure that that NZ ASD Guideline and its messages and recommendations are widely distributed amongst the ASD community.

·         Links to NZ ASD Guideline Recommendations: 2.2.1, 2.2.3, and the recommendations from Parts 7 and 8 relating to the language-appropriate information provision.

·         Status: Altogether Autism has been funded to support communication of the NZ ASD Guideline.

Activities undertaken include:

                                               i.            Website development 

                                            ii.            Targeted media follow-up

                                          iii.            Developing promotional packs for stakeholders

                                         iv.            Identifying conferences for communicating the NZ ASD Guideline

                                           v.            Distributing conference materials

                                         vi.            Library development

                                        vii.            One off training for professionals

                                      viii.            Evaluating the reach and effectiveness of the NZ ASD Guideline distribution 

Additionally: 

                                            i.            Pod casts are being been developed for the website which will soon include audio and video files for download of lectures and talks undertaken for Altogether Autism. Pod casts will also include people’s experiences of living with autism. These will be accessed from the Altogether Autism.

                                           ii.            Altogether Autism has developed a reference library accessible to the public.                                           iii.            Training for professionals using a tool called ADI-R is planned for August and September in Hamilton and

                                         iv.            In May a questionnaire has been sent to a sample population of the people who were sent the guideline for feedback on the guideline.  The feedback will assist future communications and planning. Feedback from the survey will be analysed by the end of June. This will inform the Ministries of Health and Education about areas to target further distribution of the NZ ASD Guideline. 

2. Parent Education

·         Leading organisations:  Ministry of Health, Ministry of Education

·         Goals: To provide quality-driven parent education programmes that will improve parents’ knowledge of the impact of ASD. Focused on parents of young children (i.e. before the child starts school), the programmes are expected to enhance parents’ ability and confidence to support their children to communicate, manage themselves and interact socially.

·         Links to NZ ASD Guideline Recommendations: 2.2.1, 2.2.2 and 2.2.3, plus detailed information on pages 71 and 72.

·         Status: Currently, the Ministries of Health and Education jointly purchase EarlyBird from Autism NZ. The Ministries have been running an open procurement process from November 2008 until the present.

·         When can you expect to see something from the work? The process is expected to conclude with contract(s) with one or more providers by July 2009. 

3. ‘tips for autism’

·         Leading organisation:  Ministry of Education and Ministry of Health

·         Goal: To extend the reach of the ‘tips for autism’ programme through funding additional programmes and additional facilitators

·         Links to NZ ASD Guideline Recommendations: Overview 2.1, 6.6, 6.8; Part 4, 4.3.3; Part 6: 6.17.

·         Status: ‘tips for autism’ provides teams of parents, carers and school teachers with practical knowledge and skills to support children with ASD who are between the ages of 5 and 12.  Each team completes a comprehensive long term plan and short term goals which they can action the day after the course ends. ‘tips for autism’ was written for the New Zealand context and is regularly updated to reflect new evidence and changing policies.  In 2009 (up until the end of May), ‘tips for autism’ has been delivered in 7 locations (in Manukau (Auckland), Porirua (Wellington), Invercargill, Gisborne, South Canterbury, Hawkes Bay and North Shore  (Auckland)) with a further 11 courses planned (Auckland Central, Christchurch, Stratford (Taranaki), Hamilton, Nelson, Whangarei, Bulls (Manawatu), Central Otago, Taumaurunui, Rotorua and one location to be confirmed). 

 ·         When can you expect to see something from the work?  It is happening right now. Further information and applications for the course are available at www.tipsforautism.org.nz. 

4. SPELL evaluation

·         Leading organisation/s: Kiwikiwi Research and Evaluation Services Ltd, Ministry of Health

·         Goal: To evaluate the success of the SPELL programme.  This will inform the Ministry of Health as it determines whether or not to continue funding the programme.

·         Links to NZ ASD Guideline Recommendations:  2.2.1

·         Status:  The evaluation has been completed and is under consideration by the Ministry of Health.

·         When can you expect to see something from the work?  A draft of the report has been submitted to the Ministry.  It will be finalised in June 2009. Decisions will be made following consultation with the Implementation Advisory Group and the cross sectoral Senior Officials Group. Autism NZ continues to provide this education programme. 

5. Bright Sparks: Programme Enhancements

·         Leading organisation/s: Autism New Zealand (Auckland Branch), Ministry of Health

·         Goals: To build on the positive evaluation of Bright Sparks by further developing and documenting the programme.

·         Links to NZ ASD Guideline Recommendations: Part 5 of the Guideline, 5.2.1-5.2.8

·         Status: Following the evaluation of Bright Sparks; an Auckland community-based recreational based programme for children with ASD, the Ministry has contributed to one-off funding to respond to recommendations contained within the report.

Work is continuing on programme enhancements with the current focus on the access of the programme to Maori and Pacific children and young people and their whānau and aiga.

·         When can you expect to see something from the work?  The work remains on schedule for completion on 30 June 2009.    

Interventions

There are three projects currently underway in this topic area.  They are:  

1. Family/Whānau community outreach services

·         Leading organisation: Ministry of Health

·         Goal: To provide ASD-specific family and whānau community outreach services to the ASD community in Auckland

·         Links to NZ ASD Guideline Recommendations: 1.1.1,1.4.6, 1.4.7, 1.4.9

·         Status: The Ministry of Health has negotiated a contract with Autism New Zealand. Autism New Zealand will delegate responsibility to Ohomairangi Trust and the Auckland Branch of Autism New

 ·         When can you expect to see something from the work? The new services will be available by August 2009. 

2. ASD-specific communication and behaviour support services

·         Leading organisation: Ministry of Health

·         Goals: To provide ASD-specific communication and behaviour support services to the ASD community in Auckland

·         Links to NZ ASD Guideline Recommendations: 4.3.2, 4.3.4, 4.3.5

·         Status: The Ministry of Health is negotiating this contract at present.

·         When can you expect to see something from the work? The new services should be available prior to Christmas 2009. 

3. Assessment of the feasibility of having ASD-specific behaviour support services

·         Leading organisations:  Bennett & Bijoux Ltd, Ministry of Health

·         Goals: To assess the feasibility, in the New Zealand context, of having behaviour support services that are developed specifically for people with lived experience of ASD

·         Links to NZ ASD Guideline Recommendations: 4.3.7

·         Status:  Bennett and Bijoux have this contract. They have established a Specialist Advisory Group to advise them with this work

·         When can you expect to see something from the work? The report will be presented to the Ministry in August/September 2009.  Whatever steps are taken after that will depend on the findings of the report.  

Respite

There are two projects currently underway in this topic area.  They are:  

1. Extending disability respite services

·         Leading organisation:  Ministry of Health

·         Goals: To increase access to respite services

·         Links to NZ ASD Guideline Recommendations:5.2.6

·         Status: In progress

·         When can you expect to see something from the work?  The Ministry has now signed contracts for the five following services:  i.        Waikato service for people 17 years of age and over with an intellectual disability and/or ASD – Spectrum Care Trust

ii.          Bay of Plenty/Lakes (to be located in Tauranga) service for people 17 years of age and over with an intellectual disability and/or ASD – Spectrum Care Trust

iii.         Bay of Plenty/Lakes (to be located in Tauranga) service for people under 17 years of age with an intellectual disability and/or ASD – The Open Home Foundation

iv.         Hawke’s Bay service for people under 17 years of age with an intellectual disability and/or ASD – The Open Home Foundation v.    Wellington service for people under 17 years of age with an intellectual disability and/or ASD – The Open Home Foundation

 These services are currently in set-up phase.  The purchase proposal process is not complete and contracts for the provision of other services may be signed in other areas in the future.  Respite continues to be an important area of priority. 

2. Describing ASD-specific respite services

·         Leading organisations:  New Zealand Guidelines Group, Acqumen Ltd supported by the Implementation Advisory Group

·         Goals: To describe ASD-specific respite services

·         Links to NZ ASD Guideline Recommendations:  5.2.1 – 5.2.8 ·         Status: The paper has been completed and submitted to the Ministry of Health, along with a draft service specification that could be used in any changes to respite services.  The Ministry is now considering how to progress this, within the context of the overall increase in disability respite services.

·         When can you expect to see something from the work?  As it is under consideration, it is difficult to forecast what will happen next.  The Ministry should make decisions prior to Christmas 2009. 

Coordination

There are three projects currently underway in this topic area.  They are: 1)      Business case for DHB Developmental Coordination

 ·         Leading organisations: New Zealand Guidelines Group, Ministry of Health

·         Goals: To develop new resources and tools to support the revised NASC Standards/ Guidelines and ASD-specific Guideline for NASC ·         Links to NZ ASD Guideline Recommendations: 1.2.9, 2.4.1- 2.4.4, 7.3

·         Status: The Ministry has conducted preliminary consultation with child development centres and with the ASD Implementation Advisory Group.  As a result of this work, the Ministry decided to complete a formal business case with options for how best to achieve the outcomes desired by the guideline.  Work has commenced on this business case.

·         When can you expect to see something from the work?  The business case will be available to the Ministry by September 2009.    2)      NASC ASD Coordination 

 ·         Leading organisation/s: NASCA

·         Goals:

a.      To develop and establish a NASC ASD coordination function to support existing staff identify, plan and review packages of service/ supports required to meet the prioritised needs and goals

b.      To improve knowledge skills, attitudes of NASC staff

c.      To support NASC managers and team leadersd.      To improve linkages with and across existing disability support services ·         Links to NZ ASD Guideline Recommendations: Part 1 (overview recommendations 1 &2) Part 2 (overview recommendations 1,2,3,4,5,9,11,12)  Part 3 (overview recommendations 1,2,6 &11), Part 4 (overview recommendations 1,3,&5), Part 5 (overview recommendations 1,2,3,4,5 7,9,10,11,) and generally Part 7 and 8

·         Status: Project started. Initial concepts and approaches have been worked through with NASC managers at peer review workshops in late May. A stakeholder workshop (with consumers and front line NASC staff) occurred on 29 of May aimed at getting input to the design and development of the ASD Coordination Function 

·         When can you expect to see something from the work? The ASD Coordination Function will be trialled from the end of June 2009 with the view of full implementation being completed by June 2010. 3)      Review of interagency protocols (Equipment and Therapy) between Ministry of Education and Ministry of Health for school aged children 

·         Leading organisation/s : Ministries of Health and Education, Acqumen Ltd

·         Goals:  To review the current Equipment and Therapy (physiotherapy and occupational therapy) protocols and make recommendations for revising the protocols within existing policy and resourcing. This includes:

a.      achieving the best outcome for children and young people and their families/whanau

b.      clarifying funding roles and service provision responsibilities

c.      maximising cooperation between agenciesd.      development of complementary roles and responsibilitiese.      assisting families/whanau and fundholders in making appropriate referrals ·         Links to NZ ASD Guideline Recommendations:2.4.1- 2.4.4, 3.2.4.5, 4.1.1-4.1.5

·         Status: Following consultation with key stakeholders and families of students in four locations nationally and feedback from a questionnaire distributed to individuals and key organisations, the protocols are being updated into:

a.      A Memorandum of Understanding

b.      Therapy and Assistive technology/equipment Operational Guideline: Roles and Responsibilities.When can you expect to see something from the work? 30 June 2009.  Once the revision is complete further work is required to scope how the above documents will be implemented  

Associated activity led by the Ministry of Education   In addition to the work that is led by the Ministry in the fields of parent education and teacher support (noted above), the Ministry is also leading the following projects in support of the NZ ASD Guideline: 

1. Living Guideline

·         Leading organisation:  New Zealand Guidelines Group, Ministry of Education, supported by a Living Guideline Group.

·         Goal: To ensure that the NZ ASD Guideline remains up-to-date and relevant as evidence changes.  This process will not add new topics to the NZ ASD Guideline, but keep the current topics up to date.  It will focus on areas where the evidence since 2004 has changed enough to warrant changing a NZ ASD Guideline recommendation.

·         Links to NZ ASD Guideline Recommendations:  Not directly linked to any as this project is about ensuring that the recommendations remain derived from current evidence.

·         Status:  A Living Guideline Group has been convened and met in early June, chaired by Professor Ian Evans (with Matt Frost as the deputy-Chair).  Its first job is to identify topics in the NZ ASD Guideline where the evidence has changed enough to possibly change a recommendation.  Applied Behavioural Analysis (ABA) is one topic that is already confirmed. The Ministry of Education recently funded two literature reviews that can be put through the living guideline process to determine if the evidence identified in the reviews requires changes in the current recommendations about ABA.

·         When can you expect to see something from the work?  The work plan will be with the Ministry of Health at the end of June 2009.  The next newsletter should contain more information about timeframes. 

2. Education ASD Action Plan

·         Leading organisation:  Ministry of Education

·         Goal: To develop a coordinated national plan for professional learning and development, including establishing a network of ‘Go To’ people who will take a leading role in providing evidence-based support and current information.

·         Links to NZ ASD Guideline Recommendations: 6.6, 6.7, 6.9-6.14, 6.16-6.25, 6.27.

·         Status:  The plan has been drafted and consultation is underway.  The draft plan stresses the need for activities to be connected and coherent and affirms that everyone has a role to play in supporting children and young people with ASD to learn, achieve and contribute to society, and outlines support for these roles.

·         When can you expect to see something from the work?  Initial scoping of the associated and detailed work plan will be completed by 30 June 2009.   

3. Early Intervention ASD Project

·         Leading organisation:  Ministry of Education

·         Goals: Exploring the use of the Social Communication, Emotional Regulation and Transactional Support (SCERTS) framework in early intervention in NZ. Specifically, during Phase Two (2009-2010), the goals are:o        Improved outcomes for more children, families and whānau;o        SCERTS effectively adapted and operating in the NZ context;o        More staff with a wider range of skills in providing effective interventions for children with ASD, their families, whānau and education teams;o        Further refining an effective model for providing professional learning and development and sustaining effective practices;

·         Links to NZ ASD Guideline Recommendations: 3.1.1 – 3.1.12, 3.2.1.10, 3.2.2.1 – 3.2.2.7, 3.2.3.1 – 3.2.3.3, 3.2.4.1 – 3.2.4.5, 3.2.5.1 – 3.2.5.3, 6.6 – 6.7, 6.9 – 6.12, 6.16 – 6.23, and 6.27.

·         Status: Phase Two (2009 – 2010) underway, involving thirteen teams across the country, 77 early intervention practitioners and at least 144 children, their families and whānau.

·         When can you expect to see something from the work?  There is a website for the project – www.inclusive.org.nz/asdev (part of the website is restricted to participants in the project). As resources are developed by the teams, they will be added to the website. 

Keynote address to the Disability Studies Conference, Disability Studies Research Centre, University of New South Wales,Sydney, June 2009

Dr Martin Sullivan, MasseyUniversity, Palmerston North  

Introduction

This week is a significant time in the disability communities of Aotearoa and Australia because it was about a year ago we lost two major disability activists, teachers and researchers.  I speak of Associate Professor Anne Bray and Associate Professor Christopher Newell and would like to take some time to remember and honour them.

I doubt many on this side of the Tasman would have heard of Anne Bray, let alone known her.  Anne’s younger brother had Down syndrome but he lived at home when children with Down syndrome were sent to institutions. Anne began her teaching career at Canterbury University in 1974 before being appointed to the position of lecturer in the Faculty of Education at the University of Otago. Disability issues always featured prominently in her teaching.  In 1984 Anne was appointed director of the Donald Beasley Institute (DBI) in Dunedin which had been established for research work in the area of intellectual disability.  The guiding principle of all Anne’s work was that of social justice and had the object of improving the lives of intellectually disabled people. Anne and the DBI were at the forefront of the movement to close the large psychopaedic hospitals: she and her team provided the empirical evidence for their closure, the how of the closure, and then the empirical evidence of the success or otherwise of those closures.  She built a strong team of researchers, supervising many through their PhD studies in conjunction with the University of Otago.  She edited the New Zealand Journal of Disability Studies (NZJDS) for many years before handing the editorship on to me when she contracted cancer.  Anne’s legacy is her fearless advocacy for disabled people, the DBI and its ongoing transformative – emancipatory research with intellectually disabled people in Aotearoa/New Zealand (ANZ).

Associate Professor Christopher Newell of the Tasmanian School of Medicine was a well known and much loved disability activist and intellectual in Aotearoa New Zealand.  So much so that he was accorded honorary Kiwi status whenever he visited.  He was in much demand as a keynote speaker and would do at least a conference a year in Aotearoa.  News of his death led to an outpouring of grief on our side of the Tasman. We held a special remembrance ceremony at which a number of us from the disability community spoke of his lasting impact and the lessons he had taught us in his gentle, persuasive way.

Christopher began his working life in a sheltered workshop and ended up as an Associate Professor lecturing medical students in ethics.  Often he would lecture his students from his hospital bed, which he would get wheeled into the lecture theatre in the Hobart Hospital.  Christopher was an academic activist to the core.  He was also an Anglican priest who chose not to take the high road but trod the backroads and byways where he befriended, counselled and supported the abandoned, destitute and lonely – many who were disabled people.

Christopher’s big thing was about “moving disability from other to us”.  He did this on a personal level among disabled people and struggled to inculcate it in the consciousness and public life of Australia.  He was instrumental in approaching me to extend the NZJDS to become an Australasian journal.  He will live on in journal we are planning: Disability Studies: Aotearoa and Australia.  He lives on in his work, and, more importantly, in the hearts of the many he touched and whose lives he transformed.   

Two mighty totara have fallen in the forest of Tane.  Haere ra Christopher.  Haere ra Anne.

In preparing for this key note, I had a look at the abstract I had written some months earlier to remind me of what I said I would say today. I thought it prudent to have a look at some of the work of my Australian colleagues so as to avoid carrying coals to Newcastle and looking rather stupid.  In one paper, Helen Meekosha, makes the point that the insights emerging from Australian disability studies seem to have little relevance to the makers and shakers in disability studies in the UK and USA who are immersed in their own projects (and, I might add, rivalry).  It then occurred to me that disability studies in Aotearoa New Zealand are probably just as irrelevant and unknown to Australian disability studies and scholars as their’s are to the North. Hence, rather than sticking religiously to my abstract, I though this might be a good time to tell you what has been going on across the ditch in disability studies, disability policy and disability generally.

Disability Studies 

The only programme in ANZ dedicated to disability studies is the one I teach.  It is a Post Graduate Diploma in Arts with an endorsement in Disability Studies.  A number of students go on to take an MPhil which gives them a masters degree by completing a disability related thesis. 

The programme began in 1993 with a paper called Disability Studies which concentrated on theory, policy and methodology.  It could be taken as an elective in either the Masters of Social Work or MSP programmes.  In 2003 we got permission to offer a PGDipArts with an endorsement in Disability Studies, so a paper concentrating on the Disability Rights Movement, rights, advocacy, ethics and contemporary issues was added.  I would like to add another paper so I could have a named Masters degree but since funding is tight in the tertiary sector the orders from on high have been to cut rather than add papers. People who take the PGDipArtsDS include disabled people, parents and, mostly, people working in the sector.  Next year I begin teaching a 3^rd year paper, Disability in Society, at undergraduate level which I hope will serve as a feeder into the diploma course.

When asked what disability studies are about I tend to say “The social & political aspects of disability”. I’ve modelled the programme more down the British line than the American, so it’s rather paradoxical that an American theorist, Tobin Siebers, more accurately captures what I try to do in the Diploma when he says:

The number one objective for disability studies … is to make disability an object of general knowledge and thereby to awaken political consciousness to the distasteful prejudice called “ableism”. (2008, 81)

I do this by exposing my students to what disabled writers and their allies have to say about disability in contemporary society.  Many find the whole ‘social oppression’ thesis quite shocking; and, indeed, it is shocking: what happens to most of us with impairments in today’s society is shocking. 

I must admit I sometimes feel a bit of a fake teaching the social oppression thesis because here I am sitting in front of class, highly educated and earning a good salary.  My position and income gives me certain freedoms and choices my students don’t have or are ever likely to have.  And I think this is why I like Siebers’ definition so much; it reminds me that no matter how privileged a position I occupy within academia, I am still subject to ableism both within and without academia.

But I digress.

Other programmes featuring disability in ANZ are mostly taught in the Colleges of Education which are involved in teacher training, specifically special needs education.  At the Massey University College of Education, a Centre for Research into Inclusive Education teaches papers firmly based on the social model as do the programmes at Auckland and Canterbury Universities.  

There are of course students dotted around the various campuses completing theses on disability related matters in disciplines such as anthropology, sociology, education, psychology and public policy.  These usually only really come to my attention when they are finished and if I get to examine them.

Numbers at Masters and PhD thesis level have increased in recent years thanks to scholarships established by the Health Research Council.  These scholarships are aimed at increasing the research capacity in the disability area – especially among post grads with disability.  A few years back the HRC asked Anne Bray, Alan Clarke and me to review their disability funding portfolio.  We found that practically all funding had been knobbled by clinicians doing ‘cause’ and ‘cure’ type research.  We introduced HRC to the social model and argued they should direct funds to researching the well-being of impaired people living in a disabling society. They agreed (and have since been true to their word) and we then said “well to do this research we need to increase capacity amongst disabled people by funding them through advanced study.”  Hence the scholarships.

What made this all possible was the policy climate of the day.  As you shall see, we had a NZ Disability Strategy in place and a government with a well developed disability consciousness.  I think it important to spend a bit of time on policy and disability policy at this point, because much of what happens within Disability Studies in Aotearoa is very much determined by what is happening in policy.  By this I mean that when teaching a research based degree, I find that students mostly look to apply disability theory in a critical analyses of contemporary disability policy.

Disability Policy Aotearoa 

To understand social policy in NZ one has to understand the founding document of ANZ, the Treaty of Waitangi.  Te Tiriti o Waitangi was signed on 6 Feb 1840 between Maori and representatives of the British Crown.  It is a short document consisting of three articles.

Article the first [Article 1]

The Chiefs … of New Zealand … cede to Her Majesty the Queen of England absolutely and without reservation all the rights and powers of Sovereignty which [they] exercise or possess…

Article the second [Article 2]

Her Majesty … guarantees to the Chiefs and Tribes … the full exclusive and undisturbed possession of their Lands and Estates Forests Fisheries and other properties which they may collectively or individually possess … but the[y] … yield to Her Majesty the exclusive right of Preemption over such lands

Article the third [Article 3]

… the Queen of England extends to the Natives of New Zealand Her royal protection and imparts to them all the Rights and Privileges of British Subjects. 

But to confuse matters, two texts were signed: one in English and one in Maori.  About 40 Chiefs signed the English version, 500 the Maori version.  I’ll return to these in a moment.

The treaty was by and large ignored by settler governments and following the land wars of the 1860s, much of Maori land was alienated via confiscation, legal and illegal land deals, swindles etc and with the loss of land the loss of language, culture and traditional kin based society followed as Maori drifted to urban centres. Here the ravages of alcohol and disease took further toll. 

By the 1960s, Maori were largely an urban, dispossessed people at the bottom of all social indicators.  Clearly the policy of assimilation was not working and one of biculturalism was suggested as the way forward for Maori.  Biculturalism is a type of cultural pluralism characterised by two partners rather than several.  This was more in keeping with the spirit of the Treaty of Waitangi which implied a partnership between Maori and the Crown. By the 1970s biculturalism had become the basis for Maori policy and through the next decade it quickly became the goal for all government departments.  By the 1990s, substantial progress had been made to at least introducing a cultural dimension and increasing the Maori workforce in the public sector (Durie, 1994). 

Parallel to, and giving impetus to movement within the state, was a renaissance in things Maori within urban settings. In the early 70s a number of young urban radicals formed Nga Tamatoa and began discussing their alienation from their Maoritanga; ie their loss of language and connection to their ancestral land, marae and their culture.  One faction within Nga Tamatoa modelled themselves on Black Power leaders in the US while a more conservative, university educated group set about supporting Maori migrants to the cities to find jobs, representing Maori before the courts, they set up kohanga reo or language nests to teach their children the language, established year long courses for training teachers in the reo and so on. So from the 70s what became known as the Maori renaissance in things Maori dominated the political & cultural consciousness of Aotearoa.  The Treaty of Waitangi, breaches by the Crown and calls to honour it were central to this renaissance (Walker, 1990; Durie, 1994).  

As I have mentioned there were English and Maori versions of the Treaty and this resulted in much debate around interpretation.  [See Durie 1994 p.85 for diagram] Maori argued that a greater degree of Maori authority was promised in the Treaty, while the Government argued that a full transfer of sovereignty had occurred.  In an attempt to reach some sort of compromise it was decided that it would be easier to follow the principles underpinning the Treaty, rather than the actual text itself.  A series of Treaty Principles subsequently emerged in a number of forums including the 1988 Royal Commission on Social Policy (RCSP), the courts and the Crown/government.  These principles were used to guide the implementation of the Treaty in various settings. The ones which concern us in Disability Studies are those which the RCSP formulated to guide the development and implementation of social policy generally.  These are the principles of partnership, participation and protection.  

Partnership

·        sometimes used to describe a working relationship between Maori Iwi (tribes) or hapu (sub-tribe) and government agencies

·        implies an association of equals but it more often refers to a reassignment of government authority to a tribal group within constrained guidelines – I fear that this is about as good as it gets in some of those partnerships between disabled people and the state or professional bodies 

·        symbolism – Treaty partners working together to achieve mutually acceptable goals

Participation

·        refers to Maori involvement in a particular activity or sector eg District health boards (hospitals and their regions)

Protection

·        this relates to Article three in the Treaty which guarantees Maori the same rights and privileges as other New Zealanders

·        implies “active protection” which requires Government to intervene positively rather than just let Maori take their chances alongside other groups ie provide culturally appropriate services

Many within the disability rights movement in NZ see themselves as occupying a similar position to Maori in mainstream society.

·        Maori were colonised by the British crown; disabled people have been colonised by medical and associated professionals;

·        Maori were made strangers in their own land; many people with disability were locked up in institutions and made strangers to their communities;

·        Maori were forced to participate in a biased, mono-cultural system; disabled people were excluded from participating in their communities on their own terms;

·        Maori are discriminated against by racism; disabled people by disableism/ableism;

·        Maori have high rates of failure in an institutionally racist education system; people with disability are routinely excluded from an ableist, mainstream education system;

·        Maori are subject to higher rates of unemployment and lower rates of income than non Maori; disabled people have high rates of unemployment and many are condemned to survive on subsistence level benefits;

·        Just as Maori have had tino rangatiratanga denied and made subject to British law, people with disability have had their humanity denied and made subject to pity, medicalisation and welfarism;

·        Just as Maori have been granted a limited form of tino rangatiratanga over tribal resources, many disabled people have been granted limited control over their lives within the confines of services, individual life plans, group homes and so on.

Given these parallels, it is not surprising that many disabled people in Aotearoa came to the conclusion that they needed their own treaty; a treaty to establish a genuine partnership with government; a treaty to guarantee our equal participation in society; a treaty which affirmed the active protection of our citizenship rights by the state.  With the election of a Labour led coalition government in 1999, this seemed a distinct possibility because in opposition they had promised us a Minister and Office for Disability Issues and the development of a NZ Disability Strategy. 

After extensive consultation with disabled people, the NZDS was adopted in 2001.  It is underpinned by the social model and aims to create a non-disabling society (P.5) by progressively removing the barriers to participation which confront impaired people.  This is captured nicely in the following:  

Underpinning the New Zealand Disability Strategy is a vision of a fully inclusive society.

‘A society that highly values our lives and continually enhances our full participation.’ (NZDS 2001, p.1)

Fifteen objectives are set out for the Government to achieve on its way towards a non-disabling society.  Ministries, departments and state agencies are required to report on the progress they have made in implementing the NZDS in their annual reports to parliament.  In the 2004/05 Progress Report, it was noted that a growing number of crown entities and territorial authorities were willingly taking part in Strategy implementation even though they were not required to. This is encouraging.  As is the broad, cross party support for the Strategy.  

Given this, many disabled people in Aotearoa New Zealand now see the NZDS as their treaty with the Government to build towards a society in which they can participate on their own terms and as much as they want. It also implies a partnership between disabled people and the government as well as the active protection of disabled people by the government.  Such partnership was highly visible during negotiations around the UN Convention on the Rights of Persons with Disabilities; from the beginning the NZ delegation was the only one to consist of State officials and disabled people including one with intellectual disability.

The NZDS has its limitations.  For example, it only applies to the state and those contracted by the state to provide services. And while its philosophy is right, the objectives could do with refinement, and implementation is quite lumpy.  But what it does provide is a multitude of entries for analysis and critique within disability studies.   And then, two questions are critical: is it working for Maori? Is it working for non Maori?

And therein lies the rub.  When I, a pakeha, am talking about disability, am I talking about the same thing as when Maori are talking about disability?  Up to twenty-five years ago it would have been acceptable for me to go out, do the research and become the ‘expert’ on Maori and disability.  This is unacceptable today because of Treaty consciousness, tino rangatiratanga and the reality that only Maori can speak for Maori with any authenticity.  And this presents a problem insofar as there are very few Maori disability researchers in the field.  

Maori and disability

One source, Maori Concepts of Disability, by Jo Kingi and Anne Bray reveals the potential for our talking past each other.  When Kingi asked Maori what the word disability or the concept disability meant to them, they generally saw it in terms of the effects of colonisation: 

It’s disability to have your land taken off you, it’s a disability to have your family dissolved and shifted to an urban environment where you’ve never been before.  It’s a disability to be told that you can no longer grow your own food so you have to get a job in a system that has been set up by white people for white people….  (Kingi and Bray 2000, p.8) Maoris are being brainwashed into doing things the pakeha way – that’s disability – it’s got to be done the Pakeha way – brainwashed. (ibid. p.8) We are disabled in the Pakeha world – in our world we’re not. (ibid., p.21) Poverty was seen as more disabling than any physical, psychiatric or sensory impairment. Drugs, alcohol and tobacco use by Maori were issues that were also perceived as disabilities by Maori (ibid., p. 12).   Policies of assimilation, especially the legislation which made the teaching of te reo Maori (language) in primary schools illegal and which remained in force until 1967, were seen as especially disabling.  One person spoke of his loss of language as his disability. Most spoke of the process of colonisation and its particular effects on identity and self worth as a disability:  We have a tendency to think of people in wheelchairs but I think from my understanding, and no doubt others, that disabilities is that people have lost their knowledge of whakapapa [genealogy] and how they are related to whanau, hapu and iwi [family, sub-tribe and tribe].  (Kingi and Bray 2000, p. 18) When asked if they thought there was a difference between Maori and pakeha concepts of disability, many commented on just how different the worldviews actually are:  Well I think the Maori health view is far more holistic than the pakeha health view – it takes into account the whole being and I believe the pakeha health view separates it – fixes one thing (ibid., p. 22)  Well I know we are different because we accept people as they are. (ibid.) There was no such things as manic-depressives or schizophrenic in Maoridom… . (ibid.)  It is important to note that Kingi stresses there is no such thing as ‘the’ Maori view on disability and what she presents is ‘a’ Maori view of disability.

This tends to be born out by an earlier report He Anga Whakamana. A Framework for the Delivery of Disability Support Services to Maori, (1995) which takes account of the effects of impairment as well as those of colonisation and assimilation.   In one of the earlier quotes, a participant mentions the loss of whakapapa and the knowledge of relationships between whanau, hapu and iwi as a disability.  This person is talking about whanaungatanga or relationships; the sense of family connection built through shared experience and working together which gives people a sense of belonging.  Whanau translates into extended family or family group.  So Maori do not see themselves as individuals so much as part of an extended group, be it whanu, hapu or iwi.  Identity and place in the world is closely tied to these groups.

This has implications for disability studies and disability support services, because while it may be appropriate to treat disabled pakeha as individuals, disabled Maori must always be seen as part of a whanau.  This already happens to a certain extent when Maori are negotiating over services etc. They are encouraged to bring members of their wider whanau to support.   When my pakeha friend is having another confrontation over DSS for her autistic daughter, I usually attend these meetings as whanau support even though there is no blood relationship between us.  This is entirely consistent with contemporary meaning of Whanau.  I guess you could call this biculturalism in action.  In summary, it is evident that disabled Maori see themselves as Maori first and as disabled people second.  This has huge implications for disability studies and the disability movement in Aotearoa in terms of developing a true partnership with Maori if disability studies and the movement are to have any relevance.   

It also means that disability studies in Aotearoa has to become bicultural and within that bicultural framework provide active protection for Maori academics and Maori students.  Active protection suggests to me a parallel development in which Maori have rangatiratanga and are resourced to do disability studies according to tikanga and in a culturally appropriate way.    Just as the Treaty of Waitangi implies one nation, two peoples, a Treaty centred disability studies programme will be bicultural and involve exchanges and opportunities for learning between te Ao Maori and Pakeha worldviews on disability I think it would be very useful for disability studies in both Aotearoa and Australia to do some research into whether any indigenous disability movements have developed, and if so, what forms do they take, their culture, objectives and so forth. I think we have a lot to learn from indigenous people when it comes to disability. 

On that note I would like to finish.  I have attempted to provide some insight into disability studies in Aotearoa NZ by unpacking the cultural context which influences both disability policy and disability studies.  I have done this at the risk of conveying a view of disability studies as been narrowly policy focused and obsessed.  Nothing is further from the truth as all the debates about the utility of the social model, of structural as opposed to poststructual approaches, the problem of impairment and how to bring the body back in without slipping into medicalisation etc, etc are alive and well on our side of the ditch.  These are worthy debates but, perhaps it is time for us in the global south to be shifting our attention to what is distinctive about disability in our part of the world, what we can learn from it and how to ameliorate it.  

Durie, M.  (1994) Whaiora. Maori Health Development. Auckland: OxfordUniversity Press.

Kingi, J. and Bray, A. (2000) Maori Concepts of Disability. Dunedin, N.Z.: Donald Beasley Institute Inc.

Ratima, M., Durie, M., Allan, G., Morrison, P., Gillies, A. and Waldon, J. (1995)  He Anga Whakamana. A framework for the delivery of disability support services for Maori. Wellington, N.Z.: Core Services Committee, Ministry of Health.  

Siebers, T (2008) Disability Theory. Ann Arbor: The University of Michigan  Press.

Walker, R. (1990) Ka Whawhai Tonu Matou. Struggle Without End. Auckland: Penguin Books.

 Hope this blog finds everyone in ‘cyber space’ well.

I was very interested in the Prime Minister’s ’summit on employment’ last Friday. Those who know me won’t be very surprised by that (but they might be surprised to read that I didn’t watch the closing comments live- I was exploring another passion of mine- cricket- go the Black Caps!) But I was interested by some of the comments that I heard, and I also wondered ‘whose voices weren’t being heard at the summit.’

I should say that I’m not against the idea of a summit to discuss the economy- it doesn’t take Adam Smith to tell you that the World is in some economic trouble. And being an ‘ideas’ person myself, I think its crucial that we do some factual thinking and theorising on these matters.

That’s why I was more than mildly surprised to hear the Prime Minister urging delegates at the start of the day to ‘leave their ideologies at the door.’ Lets think about that for a minute. When I did first year University politics, I did a course on political ideologies- we had an ‘ideology a week!’ The main thing it taught me was that EVERYONE has a way of seeing the World- its a series of ideas which offer an account of the present state of the World, gives ideas for how to change it and then outlines how that change will brought about. It therefore would worry me greatly if delegates hadn’t gone with ways in which they wanted to change (or preserve) the World to maintain employment.

I also wonder, following on from that, what ‘ways of seeing the World’ weren’t present at the summit.

Consider these three facts:

-60% of disabled people earn less than $15,000

-The employment rate of people with Asperger Syndrome is 3% in the Western World.

-In times of economic downturn, people with impairments (especially intellectual impairments) are more likely to be the first to ‘be let go.’

 I wonder who put those three facts to the Jobs Summit? In fact, I know who did- Wendi Wicks, Policy Researcher for the Disabled Persons Assembly. But, as I’m sure Wendi would acknowledge, its a hard job putting the views of 660,000 New Zealanders (and their families or whanau.) This number includes the 40,000 people with autism.

However, the Government has urged us to be innovative and come up with ideas. So here are my three top ones:

1. The 9 Day working fortnight is a good idea- I should know I do it now!How about the Government and industry, as well as paying for skills and training development for workers- extend that out. So on the 10th day Government could reward firms which do mentoring of groups of people who most need job skills- such as people with ASD. People with ASD- especially Asperger’s Syndrome- have highly developed fields of interest. The strategic use of these ‘fields of interest’ would be of great use to the economy. Support will be needed by firms however to make sure that both they and those of us with ASD get maximum benefit from the experience.

 2. Recognise that work is part of the ‘ordinary life package.’ I’m conscious as I’m writing this where I am. I’m sitting on my computer at my new flat and once I’ve finished this I’m going to cook myself some dinner. These may not sound like big things- but for the majority of disabled people these choices struggle to happen. Why? Because in order to pay the rent on my own flat, buy food and drink and write this blog I need two key components- education and employment- both things which disabled people can be ’shut out from.’ So please remember those making policy decisions from this summit- the ordinary life package!!

 3. Articulate some VALUES under which decisions will be made at this time. This is my ‘biggie’ and precisely why I think ‘ideology’ does have a part to play here. Telling us what ‘values’ the Government expects people to use in this crisis would reassure us (well me anyhow) that the Government doesn’t support a ‘free for all’  in the scramble for everyone to secure their livelihoods. Values provide us with a series of boundaries and beliefs which we believe are fundamental. Here are three I’d like to see articulated:

 1. Diversity- making sure we ‘include all people’ in our solutions to this crisis.

2. Social Justice.

3. Interdependence- an acknowledgement that we cannot survive without each other’s talents and labour.

 People may disagree with my assessment here. But I hope it at least gets people thinking- the thing I think we most need to do in this situation.

 PS: Russell- am enjoying watching ‘Media 7′ now I have freeview!

Cheers, Matt.

29 January 2009 

Allan Peachey MP

Member of Parliament for Tamaki

Chair

Education and Science Select Committee

Parliament Buildings

Dear Mr Peachey

EDUCATION (NATIONAL STANDARDS) AMENDMENT ACT 2008 

I am writing on behalf of the board of Autism New Zealand Inc to express concerns about the Education (National Standards) Amendment Act 2008 which was passed under urgency in December. We had hoped to have the opportunity to make a submission to the select committee but were denied this opportunity because the Bill was passed under urgency through all its stages in two days.

This Act has serious implications for students with autism spectrum conditions and their families. But we do not think this has been taken into consideration by Parliament in passing this Act. In this letter we set out our concerns and ask some questions about the legislation.

There are two particular aspects that concern us for their potential negative effects on our children and families.

Part 1:  Increased fines for parents who do not ensure their children attend school, and extending the powers of prosecution beyond the local school board. 

Many students with autism have very negative school experiences. This could be due to bullying, the school not understanding their learning needs, sensory overload caused by the school environment, or a combination of these. Many students become reluctant to attend school to the extent of becoming school refusers or even school phobic. Others have been subject to ‘kiwi suspensions’ whereby they and their families are made to feel so unwelcome at the school that they find it easier to stop attending, although official procedures might not have been followed.

Whatever the cause, many students of legal school attendance age do not attend school. Many parents sympathise with their children as they see the stress the formal school environment causes.  But these parents are now liable for a $3000 fine on the second offence of not enforcing their child’s attendance. 

Will there be counter measures put into place to make school a more welcoming and appropriate environment for students with autism, and their families?

Part 2: Literacy and numeracy standards 

We have three questions about this section:

1. If all children are to be tested against national standards in New Zealand what provisions will there be for those with different learning styles, and for those whose strengths are not in literacy and numeracy?

2. We would like to know what extra support will be provided for children with special educational needs, including autism, in mainstream settings? All children with special educational needs (not just those with autism) are likely to need extra support to sit these tests and schools may be unprepared to enrol them as they will potentially drag their league tables down. Most children with autism and other special needs in

3. How will the testing regime impact on those in special schools, satellite classes and units? Will they also have the same tests and reporting requirements?

We are also concerned that this legislation is signalling that New Zealand will follow the No Child Left Behind policy of the Bush administration of the United States.

Temple Grandin, PhD, an adult with autism, has criticised the No Child Left Behind policy of standardised testing of literacy and numeracy for its negative effects on the teaching and learning of children with autism. Most autistic children have special learning needs, and many have strengths in areas beyond literacy and numeracy, while they may struggle with the narrow range of abilities being tested. But because the tests are publicly notified and the teachers must use them, there is little time for the personalised learning these children require. Some children in the

NCLB has recently been evaluated by the independent No Child Left Behind Commission. (Beyond NCLP: fulfilling the promise for our nation’s children, 2007 www.nclbcommission.org).

Their report provides valuable information for those of us interested in education of children with autism and special needs. NCLB came into force in 2002 with the admirable intentions of closing achievement gaps and having high expectations for all students. The Commission’s report approved the aims of the legislation but found it is not achieving its goals.

Why? Because, after intense research, they have concluded that what makes a difference are effective teachers (such as those who can teach and engage with a diversity of students), principals who provide strong community leadership, and schools that foster learning communities. They also found that those children with the greatest educational needs tended to get the least effective or most inexperienced teachers.  We in New Zealand already know all this and it has provided the basis of our teaching and learning policies for years. NCLB has now been shown to have done little to lower the numbers of high school drop outs and has even lowered achievement in some groups. One recent report details the unexpected consequences of threats of non-achievement on students, schools and parents, with manipulation of scores, inaccurate classification of students, and reduced flexibility in the curriculum. (Fetler, L, ‘Unexpected testing practices affecting English language learners and students with disabilities under No Child Left Behind’, 2008,  http://pareonline.net/getvn.asp?v=13&n=6) 

This is why we are concerned if the intention of the Education Amendment Act is to adopt an American system that has been shown to be deeply flawed.

I have attached two short papers from the Commission on No Child Left Behind (The Facts: ensuring students with disabilities achieve academic success and Teacher and Principal Recommendations: effective teachers for all students, effective principals for all communities www.nclbcommission.org) 

New Zealand Autism Spectrum Disorder Guideline

We would like to remind members of parliament and the committee of the extensive work done on the development of The New Zealand Autism Spectrum Disorder Guideline. It assessed the evidence about what works for children with ASD in educational settings and has found that the most suitable education setting ‘will be one:

• That provides adequate structure and gives the child or young person opportunities for contact with typically developing peers
• Where staff are well trained and have a positive attitude, expertise, understanding and a willingness to work in a team with the family
• That has the ability to be flexible in meting the child’s needs over time (Recommendation 3.4.3)’.  (NZ ASD Guideline, 2008, page 129).

It recommended that:

‘tests and other cognitive assessments should be administered  by a psychologist with experience and training in ASD (Recommendation 3.2.4.1) The setting needs to be chosen with particular care and extreme care is required when interpreting test scores, particularly with young children.’ (Pg 116)

We would be very happy to come and talk to you and/or your committee about the educational needs of students with autism spectrum conditions.

Yours sincerely

Hilary Stace

Board Member

Autism New Zealand Inc

This week I received the following letter back from Mr Peachey. 

‘10 February 2009

Dear Hilary

Thank you for your recent letter relating to the Education National Standards Amendment Act 2008.

 I have not yet had time to study your letter in detail but will do that in the next few days and bring to the attention of the Minister for Education concerns that I have in relation to how our autistic children are treated in schools.

I have raised with the Honourable Chris Carter Deputy Chairperson of the Education Select Committee the thought that the committee might do some work on the schooling for autistic children.

I can not guarantee that this will happen but it is something I am quite keen to do.

 Kind regards

Allan Peachey

Member of Parliament

Tamaki’