Access by Various artists

The documentary ‘The HeART of the matter’ screened in the recent NZ Film Festival. Archival clips show New Zealand schoolchildren in the 1950 and 60s doing all sorts of glorious creating ‒ making art and music and dancing. The equipment, resources and classrooms are pretty basic: clay, newsprint, pots of paint, crayons, dye, scissors and string and cheap musical instruments. But it’s all very passionate and vibrant.

The documentary contains rare footage of a 1980s interview with Clarence Beeby, the right hand man of Minister of Education Peter Fraser, and the writer of those famous 1939 words about education for all[1].

The Government's objective, broadly expressed, is that all persons, whatever their ability, rich or poor, whether they live in town or country, have a right as citizens to a free education of the kind for which they are best fitted and to the fullest extent of their powers. So far is this from being a mere pious platitude that the full acceptance of the principle will involve the reorientation of the education system.

Soon after Peter Fraser took on the education portfolio following the election of the first Labour Government, leading overseas educationalists were invited to New Zealand for the 1937 New Education Fellowship conference . People were given a day off work to indulge in this education talkfest across the country. Educational enthusiasm gripped the county. After years of Depression, lifelong learning and investment in the educational potential of the nation’s citizens became everyone’s business.

This month the annual Peter Fraser lecture in Wellington recognised the educational legacy of the former Prime Minister. Clips from the documentary were shown, demonstrating the centrality of creativity to this vision.

However, the panelists’ stories which followed revealed how far we have drifted from this vision. We now have a regime subsumed to the constant assessment of National Standards and NCEA. Arts and crafts have largely been tossed aside. Education is now a limited commodity measured by box-ticking. All students have to do National Standards yet the schools’ reports must not mention that there are students with diverse educational needs in the aggregated data. Uniformity, not creativity is the aim.

Where did it go wrong? This National Standards regime which started immediately after the 2008 General Election is one negative landmark.

Before this Access blog we had a website with an autism focus called Humans, run by our Russell of Public Address. Humans has now gone to internet heaven, but fortunately much of it has been archived. Our autism community’s prescient wariness of National Standards for autistic kids led to a select committee hearing, and a report just before the 2011 election.

We were assured that National Standards would be optional for autistic students. Temple Grandin famously said most of the inventions in the world have come from the creativity of autistic people. Yet now we are stifling that creativity and our young autistic children risk being labelled as failures. So much for the Beeby/Fraser vision for an education system extending students to the ‘the fullest extent of their powers’.

As we wait for the latest Parliamentary education select committee report on students with dyslexia and autism, it is interesting to reflect on this recent history (and a shout out to Green MP Catherine Delahunty who has been our ally throughout).

For the autism nerds and to acknowledge our history, the Humans post and committee’s 2011 report are republished below in full.

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National Standards – an update (from the Humans blog 7 October 2011)

Just before Christmas 2008, the act establishing National Standards testing in education (as well as bigger fines for truancy) was rushed through all its stages in parliament by the newly elected National Government, without any scrutiny from the select committee process.

Soon after that I was in the local supermarket when I saw the Member of Parliament, Allan Peachey, who was the new chair of the Education and Science Select Committee – the committee that should have been given the job of examining the bill and hearing public submissions. As happens in New Zealand, where politicians are seen as ordinary citizens, I introduced myself and expressed my concern about the impact of national standards on autistic students. He suggested that Autism NZ (I was then on the board) contact the select committee. Which I did, and the concerns were covered in an early post on this humans blog. We visited the committee twice before my term on the board finished. Both the Ministry of Education and current Autism NZ CEO and staff have subsequently briefed the committee on progress.

However, in three years, nothing much has been resolved, and it seems schools are more or less deciding for themselves whether their autistic students are required to participate in National Standards. The National Standards regime itself remains very unpopular, divisive and largely resisted by schools. It is a pity the initial bill did not go through the select committee process as many of the difficulties in implementation would have become obvious then (and may have been resolved). Meanwhile the US has largely abandoned the No Child Left Behind Policy on which our standards regime was largely based.

As the current session of parliament comes to an end, the Education and Science Committee of the New Zealand House of Representatives has issued a report on the briefings it has had over the last three years from Autism NZ over the vexed question of the National Government’s new national standards regime and its impact on and appropriateness for students with autism. That such a report has been published is a victory for citizenship democracy. But this won’t be the last time we need to stand up for people with autism in the formal political processes. The text is reproduced here in full.

BRIEFING FROM AUTISM NEW ZEALAND

Recommendation

The Education and Science Select Committee received briefings from Autism New Zealand, from the Ministry of Education on the educational needs of students with autism spectrum disorders, and from the Ministry of Education on the arrangements for assessing students with autism against the National Standards. We recommend that the House take note of our report.

Introduction

We received a letter from Autism New Zealand Incorporated, dated 29 January 2009, which expressed concern that they had not been able to make a submission on the Education (National Standards) Amendment Act 2008 as it had been passed under urgency. The letter also set out their view of the implications of this legislation for students with autism spectrum conditions and their families. We initiated a briefing from Autism New Zealand on these issues (and invited the Ministry of Education to attend); subsequently, we initiated briefings from the Ministry of Education on the educational needs of students with autism spectrum disorders, and on the arrangements for assessing students with autism against the National Standards.

Hearings of Evidence

29 April 2009

We heard from Autism New Zealand that their main concerns about the Education (National Standards) Amendment Act 2008 were that it provided for higher fines for parents who do not ensure their children attend school and that it introduced formal testing against literacy and numeracy standards for all primary-age pupils. When a student with an autism spectrum disorder does not attend school it is much more likely to be because of a negative school environment than a lack of effort on the parents’ part.

Students with ASD are likely to have different learning styles, and educational strengths that do not line up with formal definitions of literacy and numeracy. They noted the negative effect on the teaching and learning of ASD students of the No Child Left Behind policy in the United States.

Autism New Zealand also noted the publication by the Ministry of Health (co-authored by the Ministry of Education) in March 2008 of the Guideline for practitioners; recommends complementary, coordinated responses; raises awareness; and seeks to improve practice, knowledge, skills and confidence in services. They would like the Government to follow the guidelines when designing and implementing policy. Autism New Zealand had not been invited to contribute to consultation on the implementation of the National Standards; the Ministry of Education noted that the consultation had not yet started.

3 June 2009

We heard from the ministry about resources it has developed for the education of students with ASD. It noted that a majority of students with ASD could be classed as high-functioning and did very well in the school system; and many of the remainder qualified for support from the ongoing and reviewable resourcing schemes. The ministry’s response to the recommendations in the New Zealand Autism Spectrum Disorder Guideline dealing with education has been to compile an Autism Spectrum Disorder Action Plan, which focuses on early recognition and intervention, and building a national network of expertise in dealing with ASD.

The ministry has been considering support for ASD students’ transitions between classes or schools, and is developing policy based on individual education plans. Awareness of ASD in the community has improved since the ministry released a DVD called In My Shoes.

We noted that the ministry’s consultation on the National Standards had now begun, and expressed a wish that the ministry not conclude the consultation without reference to the issues raised by Autism New Zealand and the views expressed in the “Education for learners with ASD” section of the New Zealand Autism Spectrum Disorder Guideline.

4 August 2010

We heard from the ministry that about one percent of the population is likely to fall somewhere on the autism spectrum. It has established a training programme for teachers, called “Tips for Autism”, and has introduced a post-graduate diploma in special education. There is an expectation that the national curriculum will be delivered to every child in the education system; the National Standards are used to measure achievement under the curriculum and to report the level of achievement against it.

For students on an individual education plan, progress towards the individual goals set out in the IEP will be reported, and the IEP is expected to include any part of the National Standards that are achievable by each student. The ministry believes that the way the National Standards are assessed should be tailored to the needs of every child, not only special needs children with IEPs.

10 November 2010

We heard from the ministry that the Government’s response to the review of special education had been released, and included further resources to support students with ASD, particularly those receiving ongoing and reviewable resourcing scheme funding. Further work will be done on itinerant teachers operating out of special schools to support the ORRS programme. The graduating teacher standards now include specific requirements concerning special education. The ministry confirmed the policy mentioned in the previous hearing on reporting to parents for students on IEPs, and the ministry’s new guidelines for IEPs was ready to be released to schools. The ministry noted that students receiving ORRS funding, students whose schools have placed them on IEPs, and students with ASD are separate, although overlapping, categories. Students whose progress will not be reported to parents against the National Standards are likely to be only those who are both on an IEP and receive ORRS funding because of high cognitive needs. Reporting against the National Standards to boards on all students will still be required.

23 March 2011

We heard that Autism New Zealand remains concerned about the level of awareness in schools of ASD and its interaction with the application of the National Standards. They are also concerned that many ASD students are not on IEPs, and that most ASD students do not attract ORRS funding, with the consequence that many who in their view are unlikely to ever reach the National Standards will be measured against them, and will have nothing but failure to be reported. A third area of concern is the model answers supplied for assessing student work against the National Standards. A related issue is students with a wide divergence of ability in different parts of the curriculum; students may, for example, excel in reading comprehension but be unable to reach the standard for writing. Autism New Zealand is also concerned that many ASD students, particularly at primary level, have difficulty enrolling at a school; we heard about one student who had been turned away by five schools. They did not believe that schools’ concerns about their National Standards performance was exacerbating this problem.

7 September 2011

We heard from Autism New Zealand that they have had further meetings with the ministry and have been developing resources and tools for use in schools, as has the ministry. An area of concern is that a significant number of teachers still do not have the skills necessary to work with special needs children, particularly ASD children, in the context of the National Standards. Most of their concerns previously expressed to the committee remain.

We heard from the ministry that the implementation of the National Standards is a three-year programme with at least another year to run. The response to the review of special education has prompted further professional development, some for all teachers about the National Standards, and some about special education as needed. The ministry did not believe that the requirement for schools to have targets for the National Standards in their charters would discourage schools from enrolling children with special needs. The ministry considered that the information gathered from reporting against the National Standards would help bring potential problems to their notice, which the ministry would then act on.

Conclusion

We would like the incoming Education and Science Committee to note the progress that has been made on these issues, and to continue to monitor the way the National Standards are applied to students with autism spectrum disorders, particularly in the light of the recommendations from the review of special education.

Appendix

Committee procedure

We received briefings from Autism New Zealand on 29 April 2009, and 23 March and 7 September 2011, and briefings from the Ministry of Education on 3 June 2009, 4 August and 10 November 2010, and 7 September 2011. We considered the briefings on 28 September and 5 October 2011.

Committee members

Allan Peachey (Chairperson)

Kelvin Davis

Catherine Delahunty

Jo Goodhew

Colin King

Sue Moroney

Hon Heather Roy

David Shearer

Louise Upston

In an autism family you have to get good at adapting to your child. You find ways of speaking, acting and presenting ideas that recognise your child's experience of the world. Sometimes what works might seem unusual.

Dr Temple Grandin's "squeeze machine", for example, was literally modelled on the squeeze chutes she saw cattle pass through on her aunt's farm. Reasoning that the cows seemed to become calm when broad pressure was applied to them, she, at the age of 18, designed and built a machine to replicate that experience in the hope of dealing with her own autism-related anxiety. It worked. (Studies have since shown it works for many neurotypical people too.)

Dr Grandin calls the principle "deep touch pressure" and contrasts the effect with light touching, which can increase anxiety. It's the same principle behind another, less dramatic, solution: weighted blankets.

Nicola Hayward's three year-old stepson was recently diagnosed with Autism Spectrum Disorder and Sensory Processing Disorder. When she looked for ways to deal with his anxiety she came across weighted blankets – and then discovered that they can cost up to $500 to buy. As a sickness beneficiary (she has lupus and chronic kidney failure) she couldn't afford that.

"Therefore I borrowed a sewing machine and sourced the cheapest materials I could find and made my son his one. I hadn't sewn for around 20 years but I just gave it a go!" she told me.

It worked for her son.

"He loves his special blankets and it has made a world of difference for us."

And she'd like it to work for others too.

"I am making and donating these blankets to other families like ours, as I know that they are expensive and a lot of parents cannot afford them."

Nicola has set up a Givealittle page seeking donations to fund the one part of the blankets she can't source herself: the plastic pellets that provide the weight, which cost about $30/kg.

There has already been interest from other families in Nicola's blankets and you could help them by chipping in to buy a kilo, or half a kilo, of the pellets. Personally, I think Nicola should sooner or later earn a little from this work, but that's up to her. For now, she's donating her labour and finding the fabric where she can, reasoning that her own medical conditions mean she has "some spare time on my hands in order to do it."

I reckon it would be a good thing to help a good person do something good for families like hers.

If I was not in my wheelchair when I was a very young child, I would sometimes launch myself off whatever I was sitting on and end up in a heap on the ground. I used to think if I concentrated hard enough I might be able to stand up.

I guess I didn’t really understand why I couldn’t walk and I did think that I might just be slower than the other kids to pick it up. That was well before I went to primary school. I did understand quite well though what spina bifida meant. I would even explain to anyone who would ask, “What’s wrong with you?” that spina bifida meant I had a break in my spine because it didn’t develop properly before I was born and that my spinal cord was ‘broken’ at the same place and that’s why I couldn’t walk.

Any understanding of hydrocephalus came much later. My best guess is that the brain and its functionality is a much more complex thing to explain to a child, so it was deemed too difficult for me to understand. I also think my parents were learning in real time how hydrocephalus would shape my day to day life. I learned from very young to cover and compensate for the effects of hydrocephalus in ways that probably weren’t very evident or obvious to others at the time.

I don’t think I really understood what it meant to have hydrocephalus until I was in my mid-teens and had access to the internet. That’s when I began to do my own research. Hydrocephalus occurs in the majority of people who have myelomenigocele, which is the most severe form of spina bifida, and is what I was born with.

Basically, hydrocephalus is excess cerebrospinal fluid that will not drain from around the brain unless it gets help from a valve attached to a long tube that drains fluid, often into the stomach. This is called a shunt. I had one placed when I was a baby and not only did it save from further damage to cognitive function (I was extremely lucky to have a shunt placed very early) but it also saved my life. Untreated, hydrocephalus can be fatal and, in my case, certainly would have been.

When I was around age 11, a teacher aide started joining my classes at school. I had no idea who this woman was. I knew what a teacher aide was. I’d had them before, but never in class. She was introduced to me but her role did not become clear until later, and then I had to figure it out for myself. She was there to help with anything I might need assistance with.

I think it must have been established that I was doing fine in class by myself, so later I started having regular sessions on my own with my teacher aide, which mainly focused on getting me ahead in my core lessons in case I had to spend a lot of time away from school through surgery or other medical interruptions.

People with spina bifida and hydrocephalus are often not very good at maths, so that is a subject we concentrated on. We tend to be a lot better at things like reading, creative writing and spelling, so I never had any help with those classes. I do remember I had to do odd things like, when the class was outside for sport or P.E., I stayed inside where my teacher aide taught me how to knit. Not only did I not understand why I was being taught something I really hated and saw no point in, I didn’t even understand that there was something different about my brain that such an activity might benefit.

Hydrocephalus can affect cognitive function in all sorts of fascinating ways. I’ve learnt to view my brain not as deformed or dysfunctional but as different and interesting. That said, there are certain things that are frustrating. It turns out the reason I was being taught, spectacularly unsuccessfully, to knit is because people with hydrocephalus often have trouble with coordination, particularly fine motor skills. This means we can find it difficult to perform more intricate tasks with our hands.

My writing is not great because I don’t have the ability to control finer movements in my hands very well. It’s not as bad as it might be, perhaps because so much time was spent trying to improve dexterity and coordination when I was younger. It can be frustrating still when I’m handwriting a letter, which I tend not to do now, and I would have dearly loved to be able to draw a lot better than I can. Still, I think most people have something they would like to be good at but just aren’t and never will be.

Memory and concentration, in particular short term and visual memory, can be affected by hydrocephalus. Organisational skills can also be a challenge to acquire. I can sometimes find it difficult to follow a train of thought in a conversation because I lose track of what has been said. If I concentrate and don’t have any distractions, I don’t think it’s very noticeable. More annoying is the inability to do things like cross busy roads that don’t have a pedestrian crossing without help. I find it difficult to judge how far away cars are and how fast they are travelling, so I often try to wait until the road is clear, which just isn’t going to happen on a busy road.

I have to be taught a few times when I go to someone’s house where the bathroom is because I’m not able to keep a ‘visual map’ of my environment in my head. That was probably one of the most frustrating and embarrassing things about going to university. Not only could I not get around Wellington on my own for a long time without getting lost, I couldn’t even find my lecture and tutorial classes again, having already been to those rooms before. 

Disability Support Services had small foldable maps of the university, which were not only helpful in marking access points like lifts and ramps, etc. but they also served as a discreet reminder of how to get to my classes. I was lucky a good friend was enrolled in most of my classes in my first semester, so that cut back on any embarrassment I might’ve felt at getting lost all the time. I do eventually remember how to get around my physical environment. It just takes my brain longer to store that information than it does for most others.

Something I only learned when I went to university is that I have a very good audial memory so lectures were a brilliant way for me to learn and retain information. I never really had to take notes for lectures or tutorials and I didn’t really have to study very much for tests or exams.

My organisational memory is terrible, so I would have to be meticulous about writing down when an exam was and where it was and sometimes even make sure I had directions to the exam room. Then I would have to make certain I’d know where to access this information at a later date. It helps if I keep everything like that in one place - thank goodness now for cellphones! If I did forget I had a test or exam, as long as it was at the regular lecture time and place, I could be quite confident I’d still get a good mark even if I hadn’t studied. It never ceases to amaze me how weird my brain is.

I think it can help if people know some of the ways that hydrocephalus affects me so that they might modify their behaviour or at least have some understanding as to what my specific needs might be. It’s difficult to know sometimes, even for me, what is caused by hydrocephalus and what is just a facet of my personality, and I’m reluctant to overstate the impact hydrocephalus has on my life because I don’t want people to treat me differently than they might if they didn't know I had it.

Over many years of learning to adapt, I’ve been able to minimise the impact of hydrocephalus on my day to day life. On the other hand, people don’t know I have hydrocephalus unless I tell them and they won’t understand how certain things are a challenge or that I process information differently. Most often what is needed more than anything else is patience, both from myself and others.

The disability community is changing it up. We’re having a rally at Parliament today to let the government know that it must invest in inclusive education.

This action has not been taken lightly.  Like most of the community sector, our aim is to have constructive interactions with government and we are a little nervous about damaging what feels like a fragile relationship.  So it says a lot that the Education for All collaborative who are organising the rally felt that it was time to do something different.  Disabled people and families, in particular, feel that they have not been listened to and it is time to take a stand.

The final straw was the proposals in the Ministry of Education’s Special Education Update. This Update is the latest in a long line of consultations, reviews and inquiries that have done little to remove the barriers to education for disabled students.

In many ways the Update was set up for failure from the start. Despite a lot of goodwill and good words too many of the real issues and barriers were out of the Update’s scope. And as usual we were told there was "no new funding".  Any changes that were proposed were always going to result in funding one part of the system at the expense of another.

This is a familiar story to most of us in the community sector. What worries me the most is that we’ve come to accept it.  I’ve been working in the community sector for a decent amount of time now – through successive governments and through good economic times and bad. I’ve constantly been told that it isn’t about money.  It’s about making sure the money is going to the right supports and services. I get this.  It makes sense to most of us. So we re-structure and do more with less and use euphemisms when we talk about money.  Words like "resourcing" and "investment".

But when can we talk about money?

According to that well-known economic commentator Mike Hosking, we are lucky enough to be living in a rock-star economy and the good times are rolling. If Mike is right then maybe now is finally the right time to talk about money – and to see some of those good times roll into things like social services and education.

Because at the moment in our free education system we’ve got a situation where schools are having to fundraise in order to top up the special education funding they get from the Ministry of Education.  Parents are having to pay for their children’s teachers aides and additional learning supports.  And disabled students are not receiving the education that they are entitled to.

The result is families under stress, schools under stress and disabled people leaving school without the qualifications they need and without opportunities to go on to further education.  It’s hardly surprising that the unemployment rate for disabled people is double that of non-disabled people.

The Ministry of Education is likely to tell us that it has increased special education funding by around 29 per cent over the last five years.  Great.  But if that was enough we wouldn’t have children on waiting lists, or children having to compete against other children for learning supports rather than just getting them because they need them.

So we hope that you will all join us at our Rally at Parliament today, Thursday, at 4.30.  It’s a family-friendly event and everyone is welcome.  We could really do with your support.

And if you can’t be there in person, then we hope that you will sign our Open Letter to the Minister of Education.  This will be available on the Education for All Rally Facebook page.

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Tess Casey is CEO of Inclusive NZ , a membership organisation working for those who provide employment, participation and inclusion services for people with disabilities.

She is also a member of ComVoices, which actively promotes the value that community sector organisations and their people, both paid and unpaid, add to New Zealand’s economic and social wellbeing through information, and political advocacy and dialogue.

Last week my friend’s 12-year-old son asked her if she’d seen the amazing opening ceremony in Rio and he wasn’t talking about the Olympics: he was talking about extreme wheelchair athlete Aaron Fotheringham’s spectacular stunt jump through exploding fireworks.

Like thousands of other New Zealanders, my friend’s son was able to tune into the 2016 Paralympics in Rio because for the first time it was aired on our free-air-channels. In the past, those of us wanting to watch the Paralympics were forced to watch poor quality recordings on dodgy streaming websites, but this changed forever these past few weeks.  Now on mainstream TV we see today’s successful disabled athletes being interviewed by real experts.

Accessibility is a key focus for us who work in disability rights and accessibility must also include media coverage so that the rest of New Zealanders can understand and get behind some of our very talented, elite athletes.

Nearly one in four New Zealanders identify as having a disability – we are not that small a minority. And if you count our friends and families, most Kiwis will have someone in their network with a disability. Those few weeks in Rio is only part of the Paralympians' journey: sprinter Liam Malone has won Gold in Rio, but he had to crowdfund to purchase the $20,000 carbon fibre running blades that got him there. How cool it would be if we saw more stories about our disabled athletes.

Instead of the Paralympics coverage being a once-every-four-years gesture, I hope our media can keep up the momentum.  I hope they can keep producing stories that celebrate the achievements of people with disabilities while recognising the challenges we face and the barriers that can be broken down through great media work.

Being invisible in our mainstream media is an ongoing challenge for disabled New Zealanders.  Recently my colleague has publicly highlighted issues she’s faced in her everyday life as a wheelchair user and her story struck a chord with many people. Strangers have come up to her on the street and said it made them really think about accessibility and fairness.

All of this was made possible because various media outlets chose to make her and the barriers she’s faced visible. They haven’t portrayed her as a victim but as a person who should be able to ring for a taxi and not have to wait two days before one arrives.

Dispelling the victimhood mentality is an important part of the spirit of the Paralympics. Gold medallist Sophie Pascoe doesn’t see her own disability as a tragedy to overcome but as an opportunity to make the most of.

I hope the media continue to celebrate disabled people’s sporting successes. I hope the great work extends to the world of hard news, to make visible the physical, social, political and attitudinal barriers. As well as investigating and holding to account those who make decisions which are important in disabled people’s lives.

My hope is that our mainstream media’s coverage of the exploits of New Zealanders with disabilities doesn’t just tail off after the Paralympics. The we become more visible.