It’s because he’s just the principal you want your local school to have if you have a child who is autistic, or even just ‘different’, or a free spirit, or if your family does not fit the ‘norm’. Bill became principal about the same time as the 1989 Education Act which brought in community governed self-managing ‘Tomorrow’s Schools’, and also had the landmark Section 8 which meant that every child had a legal right to attend their local school. This has been problematic for many schools, but not Thorndon. School camp - no worries. All the kids went and anxious parents were welcomed to go, but some (like me) subtly encouraged to stay at home. Swimming lessons and swimming sports – all had a go, and in our last year I remember watching as a teacher carefully carried a small autistic child into the pool and walked through the water with him to complete the race.

We were lucky that Bill was principal of Thorndon School even before my own little ’special needs’  boy started school. He was already attending the speech therapy clinic next door and it was recommended that he move onto Thorndon School with its unique ‘language unit’ which had evolved at the school. Children from all over the Wellington region with significant speech/language issues enrolled at Thorndon as ordinary students. They each had a half hour daily withdrawal for one to one speech therapy, although sometimes it involved working with small groups of ‘regular’ children to model appropriate behaviour. There was also a speech language therapist who worked across the classrooms to reinforce teaching and learning. Of course this model did not survive the National Government’s 1996 policy of Special Education 2000, but by then my son’s language and associated skills such as turntaking had vastly improved with this targeted and skilled intervention. For Years 1-8 he couldn’t have had a better educational environment.

I had a child who was different (the autism diagnosis didn’t come till many years later) and he didn’t have much language or interaction when he started school. He walked on his tiptoes, spoke occasional phrases referring to himself in the third person and was often echolalic. But the school had multi-level classes and for his first three years he had the same teacher – the wonderful Margaret Rogers.

Many years later I heard about ABA and realised that Margaret was a natural at it, gently but firmly reinforcing the desired behaviour and discouraging the unwanted. I also remember her sensible advice about encouraging reading, at a parent teacher evening. She told the parents that school can teach the basics but it is up to them to show their child a love for the written word and reading and model it whether by reading the newspaper every day, a weekly trip to the library and bedtime reading. She resisted sending reading books home which then became a tedious homework chore, although school library books chosen by the children were encouraged.

Thorndon School under Bill’s leadership was genuinely child-centred and the children all equal regardless of their background or abilities. When my child was stressed it was OK for him to run out of the classroom to watch the school caretaker sweep the leaves, while another child in his class preferred to do her learning standing on her head. My child was a runner and there were three school entrances onto busy inner city streets but there was never a mention of requiring a fence - somehow they all seemed to look out for each other, and what was happening in the classroom or playground was rather interesting and worth staying for.

 Extensive research shows that that there are three things that make a good school:

• effective leadership
• good community/school relationships
• high expectations of successful achievement for all the students.

In my experience this all happened at Thorndon. So what is it about Bill that is special (although he would probably hate that identification as much as ’special needs’ children do)?

Firstly, he’s an enthusiast for education. He was always on the lookout for new ideas and was prepared to try them. Before Bill’s time the school was one of the first in Wellington to have on-site after-school and holiday programmes and a Maori immersion class. In his time it was one of the first to embrace on line learning and become a networked school. There was flexibility so that opportunities could be taken up. So when Nelson Mandela visited parliament, the Thorndon children walked down the road to chat to him. Bill got cheap tickets to take the children to the International Festival of the Arts (my son went to many events) and even the young children went to the opera. They all regularly walked to the city library, participated in the fringe festival and other local events.

He had a knack of employing enthusiastic teachers and particularly good teacher aides. They also seemed to like the school and stayed.

Bill always seemed calm – whether a child broke their leg in the playground, had a meltdown, or in one case threw a rubbish bin at him after smashing a window. Bill told me once that when he graduated from teachers college the male teachers were all given a leather strap to hit the kids. Of course he never used it (although corporal punishment only became illegal in the late 1980s).

He was also not beholden to compliance requirements from the Ministry of Education (which was just across the road) or when ERO came. His attitude seemed to be to do minimal compliance and get on with the real work of teaching and learning. This  infuriated some officials and board members, but good relationships were soon restored. What he did show was that inclusive education was possible, practical and of benefit to all participants, and all those who experienced this first hand at Thorndon have hopefully taken it into their own future.

So thank you Bill, for helping give my son such a good eight-year educational start. I hope that other autistic children find such inclusive schools with other Bill Suttons in charge. I imagine your retirement will be as creative and child centred as your educational career.

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.)

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’

Hello, 

This past Friday, we met with representatives from the Office of the President-Elect on Autism Policy. The meeting was attended by representatives from the Autistic Self-Advocacy Network, Easter Seals, TASH, the Marino Foundation, Autism Speaks and the Autism Society of America.

At the request of the Office of the President-elect, we presented to the new administration our top three policy priorities for the coming year:

 1) Supporting and Empowering autistic adults,

2) Ending School Abuse and Ensuring a Free and Appropriate Public Education for Every Student, and

3) Balancing the Research Agenda in Support of Quality of Life.

You can read our recommendations to the new Administration on our website and we encourage you to post them on your blogs, listservs and elsewhere.  Although these are our top three priorities, they do not represent our only action items and we are pleased to report that the incoming administration expressed a strong interest in remaining in continuous contact on these and other issues. It is absolutely essential that we ensure that autistic self-advocates have a voice at the policy table and we will continue to keep you up to date as we advocate for the autistic community. 
Nothing About Us, Without Us!

Regards, 
Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC  20036
http://www.autisticadvocacy.org
732.763.5530__._,_.___

Dear President-elect Obama:

On behalf of the Autistic Self-Advocacy Network, we would like to provide your office with the attached policy recommendations addressing our top three public policy priorities for the new administration, as per the requestmade by your transition team. The Autistic Self-Advocacy Network is an international civil rights advocacyorganization of autistic people across the lifespan advocating for our community in public policy, service-delivery,research and media representation. Our organization is unique amongst autism advocacy groups in that we are run entirely by and for autistic people, the all too often unheard stakeholder in autism policy.

We want to applaud your efforts to ensure that this will be a fully inclusive and transparent transition process andhope that the same spirit will govern the upcoming administration.  As 2009 begins, autistic people across the country and the world continue to face many obstacles preventing the full realization of quality of life,communication, rights and opportunity. The public conversation about autism continues to be one that is held largely without autistic people, who should be the central stakeholder. It is necessary to implement the central tenet of the disability rights movement, “Nothing About Us, Without Us,” in our community.

Furthermore, numerous service-delivery and rights protection infrastructures designed to protect individuals with disabilities are not yet proficient at meeting the needs of autistic people across the lifespan. This must change. At the same time, it is also important that we not disconnect autism issues from the values and principles of the cross-disability rights movement. With that in mind, we have been active participants in the consumer-led Disability Leaders Caucus alongside other disability rights organizations such as the American Association of People with Disabilities, theNational Coalition for Disability Rights, the Special Olympics and other groups. We wholeheartedly endorse and are proud to have helped to develop the recommendations of that coalition alongside our own more specific recommendations focusing on the top three priorities of the autistic community.

Our top three priority areas are as follows:

1. Support and Empower Autistic Adults

2. End School Abuse and Ensure a Free and Appropriate Public Education for All Students on theAutism Spectrum

3. Balance the Research Agenda to Support Quality of Life

We have included a one page description of each priority area as well as recommendations on specific means of policy implementation. Please feel free to write to us if you have any follow up questions and we look forward tocontinuing to be a part of the policy process under the incoming Obama Administration.

Regards,Ari Ne’eman 

President

The Autistic Self Advocacy Network

Support and Empower Autistic Adults:

Current CDC statistics estimate the ratio of autism spectrum diagnoses amongst children at 1 in every 150. Systems designed to meet the needs of adults with disabilities are unprepared to deal with the large numbers of identified students on the autism spectrum preparing to transition into secondary and post-secondary environments. We must work to help high schools and adult services infrastructures meet the needs of autistic adults. Furthermore, a growing number of studies analyzing factors such as diagnostic trends, IDEA statistics and other factors suggest that rather than an “autism epidemic” what we are seeing is increasingly accurate diagnosis of previously un- or mis-identified individuals due to better diagnostic criteria and awareness. As such, there exists a large population of un-diagnosed or only recently diagnosed autistic adults whose needs must be met.We recommend the following:

▪ Ensure that autism health insurance reform addresses the needs of all autistic people – including coverage of methodologies such as speech and occupational therapy and Augmentative and Alternative Communication(AAC), as well as adult needs such as mental health services and vocational counseling programs.

â–ª Increase capacity of existing disability service-delivery and rights protection infrastructures to meet the needs of adults on the autism spectrum by:

-Ensuring that future re-authorizations of the DD Bill of Rights Act, the Rehab Act, IDEA and other major disability service-delivery and rights protection laws incorporate language requiring covered infrastructures to increase capacity and expertise needed to serve individuals on the autism spectrum across the lifespan.

-Work with Congress to Pass and Implement an Emerging Needs Protection & Advocacy Program as well as other initiatives discussed in Sen. Clinton’s Expanding Promise for Individuals with Autism Act. (S.937)

-Fund pilot programs to develop models for emulation on issues like employment supports, housing, socialsupports, post-secondary transition, community integration and other issues of importance to autistic adults.

-Appoint individuals knowledgeable in autism spectrum issues to lead OSERS, OSEP, ODEP, the DOJ Disability Rights Section and the EEOC.

â–ª Aggressively enforce disability discrimination laws in regards to autistic people across the lifespan.

-Direct the EEOC and DOJ to develop technical assistance materials outlining the rights of and frequent accommodations for autistic adults in contexts such as employment and interaction with police.

-Fund an extensive outreach program to inform autistic adults and families about relevant rights.

-Convene an inter-agency advisory group on the civil rights of autistic people across the lifespan, includingrepresentatives from self-advocacy and family organizations.

â–ª Work to address the lack of physicians knowledgeable enough to accurately diagnose adults on the autism spectrum by providing funding to improve medical education about the autism spectrum across the lifespan.

▪ Provide states with incentives to address the needs of autistic adults of all kinds across the lifespan. Models to  explore include the Pennsylvania Bureau of Autism Services and the Florida CARD system.

â–ªEnsure that all task forces, commissions, committees and other entities tasked with making autism policy include substantial representation from autistic self-advocates.

End School Abuse and Ensure a Free and Appropriate Public Education for All Students on the AutismSpectrum

Our nation is facing a critical civil and human rights issue with respect to the education of students on the autism spectrum. The frequent use of restraints, aversives and seclusion place students with disabilities, including those onthe autism spectrum, in the position of being abused in the name of treatment. Students with disabilities are at risk and students on the autism spectrum, who often have significant challenges in communication and social interaction,are at particular risk of many kinds of abuse. States across the country continue to allow methods that include pronerestraint, electric shock, slapping, seclusion and other unethical and dangerous methods. This must end. Despite a requirement that all students with disabilities be educated in the “least restrictive environment”, students on the autism spectrum continue to face rates of school segregation over three times higher than those faced by otherstudents with disabilities. For too many students, the promise of inclusion remains far away. Not only has enforcement of relevant special education law civil rights provisions been lax to non-existent in many jurisdictions, but recent judicial decisions have weakened the ability of parents to fight for the rights of their children.We recommend the following:

â–ª All federal laws and regulations which protect persons – of all ages – with disabilities from abuse in institutionaland treatment settings must also be applied to schools – all schools: public, private, day, residential.

-Issue an Executive Order implementing circuit court decisions stating that the Developmental Disabilities Bill of Rights Act applies to schools and should be enforced through all available measures. Clarify that aversives, seclusion and non-emergency restraint are in violation of the DD Bill of Rights Act.

-Place responsibility and budget funds for enforcement of laws protecting students with disabilities from abuse in HHS rather than USDOE, as HHS is better equipped to ensure proper enforcement.

-Fully fund the Protection & Advocacy (P&A) system. Have USDOE instruct state DOEs not to retaliate infunding against P&A agencies for seeking to enforce the law against schools that violate it.

▪ Transfer responsibility and budget for enforcement of IDEA complaints from USDOE Office of Civil Rights to the USDOJ  Civil Rights Divison. Failing this, transfer responsibility for complaints including acts of retaliation and intimidation against parents by school districts to USDOJ to address the more egregious illegal activity.

â–ª Ensure that IDEA is fully funded and that implementation of said full funding comes along with program andfiscal audits of IDEA funds to ensure effectiveness, quality and freedom from abuse in implementation. Precedent for program and fiscal audits of federal education funds exists from similar auditing in NCLB.

â–ª Create a National Technical

assistance to school districts on effective and inclusive educational practices for students on the autism spectrum and to develop teacher training programs to help prepare teachers for all subjects and grades on the needs ofstudents on the autism spectrum.▪ Restore IDEA’s due process rights, allow reimbursement to prevailing families for expert fees, and place the burden of proof in IDEA challenges on school districts.

▪ Instruct the Office of Special Education Programs to issue a “Dear Colleague:” letter clarifying that students should be eligible for an Individualized Educational Plan on the basis of social as well as academic challenges.

â–ª Instruct USDOE to embark upon a nation-wide bullying prevention program through the use of technical assistance to schools and the funding of studies on effective means to reduce bullying, harassment and violence.

Balance the Autism Research Agenda to Support Quality of Life

The autism research agenda has been near-exclusively focused on causation and cure, two priorities out of step with the needs and desires of the autistic community. In the year 2008, only approximately 1% of the NIMH autismresearch budget was allocated towards services-research. In the private foundation sector, the situation is similar,with autism services and education research vastly underfunded in favor of causation and cure research with little impact on quality of life. The priorities reflected in the current autism research agenda send a concerning message.Research that focuses on discovering and eliminating autism both enters the dangerous and unethical realm of eugenics and avoids addressing the social barriers that autistic people face that prevent quality of life and full participation and inclusion in society at large. Balancing the autism research agenda to focus on quality of life will pay dividends by providing evidence on the most effective methods of delivering services and providing for aneffective education across the lifespan. Such a research agenda would compliment other aspects of federal disability policy, such as de-institutionalization mandated under Olmstead v. L.C., the IDEA and NCLB requirements for evidence- and research-based methodologies, the IDEA “Least Restrictive Environment” right and increasednumbers of individuals with disabilities, including the autism spectrum, in the workforce.

We recommend the following:

â–ª Require that no less than half of the federal autism research budget across all departments and agencies,including NIH, CDC, HRSA, HHS, DOL and others, be allocated towards services-research.

â–ª Pursue a vigorous quality of life autism research agenda focused on issues such as improved service-deliverymethodologies, social barriers to full participation and quality of life, effective systems change models, means ofeffectively and respectfully addressing social, behavioral, emotional and other challenges, empoweringcommunication and other priorities.

â–ª Mandate that the Inter-Agency Autism Coordinating Committee (IACC) include representation from autistic self-advocacy organizations, such as the Autistic Self-Advocacy Network, and that there exist parity between the number of parent, provider and self-advocate representatives in the public membership to the IACC.

â–ª Fund research into Augmentative and Alternative Communication (AAC) options for autistic people across the lifespan, including Assistive Technology, so as to empower all autistic people to meaningfully communicate.

â–ª Establish a moratorium on federally funded autism-related genetics research until ethical concerns surrounding a possible pre-natal test and eugenic abortion are addressed to the satisfaction of the autistic community.

â–ª Allocate no less than one third of the federal autism research agenda towards the needs of adults on the autism spectrum, addressing the near total lack of research funding towards the needs of this population to date.

▪Fund Community-Based Participatory Research (CBPR) models including autistic self-advocates as full partners at every stage of the research process, from topic selection to study design and implementation. Look to existing projects as models, such as the Academic Autistic Spectrum Partnership in Research and Education( AASPIRE – http://www.aaspireproject.org).

â–ª Provide for Student Loan Forgiveness for services-related and quality of life/participation-based researchersthat is comparable to the loan forgiveness offered for researchers who work on basic science research.

▪ Look to research funded by the National Institute of Disability and Rehabilitation Research (NIDRR) as a model for autism research priorities. 

At the launch five speakers with lived experience of autism talked briefly about the significance of the Guideline. Three were people on the spectrum and two were parents. Among the speakers was Jen Birch who is an adult with autism who has been involved with the Guideline development for several years and is the author of Congratulations! It’s Aspergers Syndrome, and Matt Frost who is a young adult with autism who will convene the ASD Guideline Implementation Advisory Group.

The full Guideline and a Summary are available from the Ministry of Health http://www.moh.govt.nz/moh.nsf/indexmh/nz-asd-guideline-apr08

The next step is the hard job of implementing the Guideline so the services and supports it recommends are available to people on the spectrum and their families throughout New Zealand.

The New Zealand Guidelines Group (http://www.nzgg.org.nz) has the contract for the implementation of the Guideline and will work alongside the Ministries of Health and Education which have led the work so far. An Implementation Advisory Group of representative people from the sector is being set up to decide on priorities, identify gaps, develop various workstreams, and generally oversee the implementation of the Guideline. There will be ongoing opportunities for input from interested people.

…………………………………………..

The following is my speech from the Guideline launch: 

“I am one of the lucky parents in the autism community. I had a supportive family. No one took my child off me and placed him in an institution and told me to forget about him. No one told me that he couldn’t attend their school, no one asked me to pay for a teacher aide, and neither was he asked to leave school because they didn’t understand autism.  No one said his behaviour was too difficult for respite care. No one said he was too disabled for a job, for independent living, to be treated as a human being with feelings, hopes and dreams. No one said it was my fault.

 Many parents have fought and continue to fight for their autistic children to be supported to live ordinary lives like other New Zealanders. Often the mother copes alone – and her whole life involves managing the complex care requirements of her child – the erratic access to education, the turnover of care workers, keeping the family together and the negotiations required to keep all the balls in the air. 

In contrast my experience was of a friendly Plunket nurse who arranged for my son to attend a local 3 year check one day in 1988. In that same hall was a speech language therapist, an educational psychologist and early intervention specialists. Within two weeks there was a plan around my son where specialist teachers came regularly to playcentre and home, and he also had weekly speech therapy. All free, all part of an integrated system. At school he continued daily on-site speech therapy.

Note: this was before the big fragmentation of the 1990s.

I did not regard this as lucky – this integrated approach just seemed sensible and instinctively felt right. It is ironic, and a sad commentary on the world in which we live, that it has taken 20 years and best practice evidence from around the world, and over 300 recommendations, to attempt to build a collaborative system that just instinctively feels right. But this time it is going to be better, more effective and more equitable. This is a whole of life, whole of spectrum, whole of government approach.

But we will not get there without a supportive and skilled workforce. Autism is also the focus of my academic research and I have dug into the 10 year history of the guideline development. Again and again there are the names of the quiet champions of the public service who have kept on calling the meetings, getting the funding, seeking out research, keeping the enthusiasm going.

And thanks to the parents for all their blood sweat and tears for their struggles to ensure our children live and interact and are educated with their families and friends and peers. And to the wonderful children (like my son who has put up with talking about him all these years). And thanks also to Minister Ruth Dyson for her ongoing support.

Now we have to get on with the job.

Last Friday was a great day. An hour before we set off for the Big Day Out, the mail arrived. It contained our older boy’s first set of NCEA results. He achieved every Level 1 standard he sat, and picked up a couple of merits along the way.

For an Asperger Syndrome child we once thought would need sheltering all his life, it was a brilliant result. We went into the lounge and showed him. He was pleased and proud, as you could see from the photographs we took of him with his certificate. His teachers say his peers have learned to not only recognise, but to value his difference. He is, literally, an original thinker. Here’s to another year.

Yesterday was not a great day. A woman from Correspondence School rang regarding his younger brother, also Asperger but a very different person, who has been out of mainstream school for more than a year. He didn’t get a report last year — he didn’t return enough work.

Through the generosity of friends, we had been able to take on a tutor, a kind and hugely experienced former school principal. We quickly realised that our original plans had been too ambitious. Our son is very bright — he reads and spells better than many adults, is articulate, and seems to grasp computer programming well  – but he has some significant deficits. When he felt overloaded, or encountered work he couldn’t immediately grasp, his anxiety would rocket and things would go haywire.

We cut back the length of lessons and, through experience, discovered that going to the tutor’s house worked better than having him come to ours. Parents of AS children may recognise the anxiety generated when an extra body suddenly enters the home. The tutor wanted to focus more on simply working together, rather than setting our sights by the Correspondence School curriculum, and there was some merit in that. But eventually he decided that our son needed more than he could give, and we reluctantly let him go.

But we had been in touch this year to negotiate a slimmed-down, and more realistic, programme for him and were preparing to make a another go at it.

Not any more. The news from the school was that our Group Special Education case worker had withdrawn approval for our son to continue with Correspondence School, because not enough work had been returned. The school couldn’t do anything about it.

Incredibly, this was our first notice of the decision. Two weeks before school goes back, our case worker had not even done us the courtesy of telling us herself. This wasn’t entirely out of character. In theory, she was supposed to see us frequently throughout the year. She came twice in all of 2007.

I’d be lying if I said that was a problem. I never felt our case worker had a good understanding of autism spectrum conditions, and her advice was often inappropriate. Over time it had invariably consisted of “send the child to school, no matter what”. Given what we, and his last school, went through, this wasn’t an option (she also pressed us for some time to send him to a residential facility, which, a specialist agreed with us, was a reckless idea). Last year, she did not approve our original attempt to undertake a reduced curriculum with Correspondence School. She told us this was not possible.

I would have to bite my lip when she came. She often gave us the impression that our problems were our own fault. Once, she offered unsolicited advice about the older boy, with whom she had no formal involvement. We should look at steering him into a job parking trolleys at the garden centre, she said. Yes, she was talking about the boy who just passed all his NCEA standards.

We may make a complaint, but I’m not interested in dealing with this woman again, ever.

So now we have to work out what to do, again. I’ve been exploring one option, but that requires a school registration. We tried with our local secondary school, the one that’s done so well for our older boy, but they’re wedded to their mainstreaming and wouldn’t countenance a school day that included time out of full-size classes, which are a sensory and emotional problem for our boy.

Again, we feel anxious and guilty. Like others in our position, we ask ourselves whether we’re doing enough. We agreed to medication (a low-dose SSRI), which was a difficult but correct decision. We’ve embarked on an RDI programme, which is promising (the specialist psychologist we see as part of this was astonished by the case worker’s urging to send our son back into classrooms) but a long, demanding game.

And again we feel like there is nothing for us, and no competent help from the system. Every New Zealand child has the right to an education. But, as we have discovered, again, there are exceptions.