Access by Various artists

3

No seclusion in schools!

by The Autistic Collective

Note: this statement from the Autistic Collective was published earlier this month but not widely circulated. I'm happy to publish it here because it's important to hear the voices of adult autistic people first-hand, and because it serves an an introduction to this recently-formed group. – RB

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The Autistic Collective wholly supports the recent decision of the government to ban the practise of seclusion in schools, and also agrees with statements made by Altogether Autism and the Human Rights Commission on the practise.

Seclusion is here defined as the forcible locking away of students in separate rooms, whether the room has windows or other amenities or not, as a means of controlling their behaviour, punishing them, or simply because a member of the teaching staff doesn’t know what else to do.

This amounts to a form of imprisonment, and a breach of the students’ human rights.

There is a difference between ‘seclusion’ and ‘respite’. The latter is when a student needs some time away from others. Autistics of all ages frequently suffer from sensory or social overload, and need somewhere to rest and recuperate. This means a space which is quiet, separate from others, preferably with comfortable furniture, and which can, if necessary, be darkened.

The important differences between this and seclusion are that, firstly, going there is at the student’s own instigation, or at the suggestion of a teacher who recognises the signs it’s needed. Autistic students can be taught to recognise when they need such respite.

The second and most important difference is that the student is never, ever forced to go if they don’t wish to, and never locked in, unable to get out even when they are ready to leave.

We also urge the government to consider funding further training for all teachers in how to manage disabled students, especially those with autism, who because of their different neurology require different methods to other students. To not do so risks either backsliding or the use of other and equally negative methods of managing students seen as ‘difficult’.

The Autistic Collective is a group of autistic advocates who have joined together in order to become more effective in our advocacy. We can be contacted at and our website can be found at www.autisticcollectivenz.org

21

Help needed! Deciphering the Plan for High Cost Community Care

by Rosemary McDonald

Back in June, Hilary Stace  contributed a post on Public Address about the miserable existence of Ashley Peacock and the drive to have him released into community based care so he can live a more ordinary life.

 The last comment was from Sacha about a month ago:

Here’s how the whole system operates – now they want to build a separate ‘cottage’ on the grounds of the same locked-up facility, rather than just transfer Ashley to a community setting as they have been ordered to. Arseholes.

What is the hold up here?  Do these people not have a plan?

Do they not have a set of guidelines for facilitating the transition of a person with a disability from a far less than ideal living situation to one more conducive to life? A set of guidelines to assist in assessing and allocating sufficient funded support to maintain health and safety, and sustain a living situation that respects his rights as a human being?

Because, as many of us know, the Misery of Health has more Policy, Plan, Guideline and Service Specification documents than it (or anyone else) knows what to do with. 

So why not one to aid in the release of Ashley, and for others whose support needs are in the High and Very High categories who desire to live in a home of their own?

Well folks ... they do.

A few days ago, a Friend sent me a document that was sent to her by the Mystery of Health in response to her OIA request asking for information about high cost packages of home based care.

For the innocent, the Miserly of Health: Disability Support Services has a great reluctance to fund for any care for those with disabilities, especially if the person with the disability desires to live an “ordinary life” in their own home.

Warehousing disabled people in residential care facilities is much easier to organise and usually more cost effective, although this type of care has well documented hazards.

The Miserly claims to limit the spend on individual home and community support service packages to no more than the cost of the same level of care in a residential setting. This is somewhere between $55K and $80K per annum.

My Friend was given a list of some 50 cases where the Ministry has funded considerably more than the cost of residential care.  All are over the $100,000 mark, and one is in the $350,000-400,000 band.

And, tacked on to the end of a largish bundle of documents, was a photocopy of ...

 NASC Guideline-High Cost Community Plans.

Ooh! I thought, optimistically, they have actually got their act together and set in place some outside -of -the -box instructions to the hidebound NASCs!

 Yay!

(It should be noted that this particular document seems to be only available through the NASCA member login.)

And the Guideline does get off to a rollickingly good start...

... seeking to provide NASCs with a "principles based" approach when considering the approval of high cost support packages for disabled people who want to remain in their homes in the community.

And expands....

The approach is based on the premise that each individual is unique and has a specific set of circumstances which drive their determined support need. This means that blanket rules are not appropriate to apply universally, and each case needs to be considered independently around each individual's circumstances.

So far so good ... and it gets even better!

With increased focus on choice control and flexibility for disabled people there is a growing number of clients deciding to remain in the community as opposed to entering residential services. [Yes!!! There in black and white!!!]  A number of people have exceptionally high support needs with an associated risk and therefore requiring 1:1 support, 24/7 to ensure their safety.

There’s a whole paragraph that speaks to the NZ Disability Strategy, Enabling Good Lives and the New Model, and acknowledges that ...

This increasing trend to access high levels of support in their own homes is related to the well established international trend...  [Whew! Aotearoa isn’t blazing a trail here ...]

And just when I’m thinking that they have finally got it ... the old Miserly of Health narrative inserts itself...

There is increasing need to apply a logical and sympathetic approach to enabling people to remain in their own home, in the face of increasing costs. While DSS seeks to achieve an "ordinary" life, with choice and control for disabled people, the need to manage within fiscal constraints prevails.

And over the page ... back to their old selves ...

The following competing tensions currently exist:

• Right of individual choice and strategic directions (local, national and international trends).

• Ministry policy is limiting due to need for financial constraint.

• There are no formal Guidelines for decision making outside policy or historical limits

($80k).

On this basis a framework for support packages in the home is required. An equitable approach needs to be established that takes into account individual circumstances and needs, whilst balancing these against affordability and sustainability.

And it is downhill from there on, with their “principles” being based pretty much on the same criteria as any other Home and Community Support package.  Heavy emphasis is placed on these being less than the cost of residential care, and states that all packages must consider “cost sharing (such as flatmates)”, which is simply another form of residential care only with fewer other residents. (The use of capitals is their emphasis, not mine.)

Service co ordinations need to be based on ESSENTIAL NEEDS only.

• MOH does not fund lifestyle choice (ie where natural support would otherwise fill the need) - for example when the family refuse other government funded supports (ie rehab/respite or MSD funded day services).

They do not define “natural supports”, and this new term “lifestyle choice” has got me flummoxed.

It pops up again over the page...

• NASC must use the ICARe process to determine the need for direct physical support (hands on support needs) at all times ensuring that natural supports (not considering lifestyle choices such as full time work) are included in the support plan. Funding will be based on assessed support hours and will be based on core staff costs.

I have tried and failed to fit “lifestyle choice” and “full time work” into a disability context, either from the point of view of the person with the disability working full time or the “natural” support person working fulltime.  As if either scenario constitutes a “lifestyle choice.

The friends I’ve talked this over with, some of whom are highly educated, don’t get it. It doesn’t seem to make sense except to provide another incomprehensible way out of allocating appropriate supports.

This document was posted on the NASCA website in March 2014. If there is a more recent version, a more refined version, I would hope that the Ministry would have sent that to my Friend rather than this sorry effort.

It is basically telling the NASCs to carry on doing what they have been doing and make the lives of disabled New Zealanders with high and very high support needs as miserable as possible while pretending to be doing the opposite.

No wonder poor Ashley still languishes.

I may have read this all wrong.

I incline towards extreme cynicism when it comes to these initiatives from the Mystery of Health, and my opinion can’t really be trusted.

I don’t trust the Ministry, and I don’t trust the NASCs. 

And this is not just about Ashley.

This is also about the approximately 20% of people with disabilities who have been assessed as having high and very high support needs.

Help, hands on help, is a necessity, and I was told recently by a Ministry of Health staffer who has direct involvement with the NASCs that they are now doing work on how best to meet the needs of this group.

If this document is the best the Miserly can offer the NASCs in the way of advice to meet the needs of this group in a safe and respectful manner, then God help them.

As the full time carer of a family member with measured very high needs…this scares me shitless. 

And others in my position will understand why.

You can download and read the full NASC guidelines here. Please share your own interpretations.

4

Education: We stand together, or we fall apart

by Linda of Autism and Oughtisms

There is a growing awareness in New Zealand that our education system is not delivering on basic obligations to a significant and vulnerable group of children.

This failure of the system affects all of the country’s children: When a child is not given necessary supports to access and take part in education, that affects not just that child and their family, it impacts on their teachers, on the other children in that classroom, and on wider society as the child has not been given the opportunity to meet their full potential. It reflects poorly on our country that we have allowed this situation to go on for as long as it has.

It’s so easy for those who don’t know them, to point the finger of blame at the child, at the parent, at the teacher, but the problems being experienced are not isolated incidents that can be solved in a piecemeal fashion; the problems are clearly systemic.

The stories that are increasingly coming to light are symptoms of an education system that is broken on many levels. Funding is inadequate and poorly allocated, while unwieldy bureaucratic forms and processes are very difficult for both parents and teachers to navigate. Once you’ve ticked all the right boxes, and managed to fit your child into those tight criteria, they are still unlikely to receive enough of what they need to succeed in class.

One of my children receives ORS funding, though it hasn’t meant he has access to all the supports he requires to fully join in at school. My other child—who in many ways faces more challenges that my first child does in the school setting—had his ORS application denied. That denied application took a month to write, working alongside the school and therapists to compile the document. He has autism, dyspraxia, and suspected dyslexia.

We now struggle from term to term to access the teacher aide support he desperately needs just to be in the classroom safely (he’s a danger to himself, not others) and to learn alongside his peers. He falls increasingly further behind in his learning. Next year, as he enters Year 3, he also starts his third school—we shift him from place to place trying to find somewhere adequately resourced to help him take part in the education that most children and families take for granted. This little 6 year-old boy has tested as having above-average intelligence — the waste of his potential is enormous, and outrageous.

The stories of seclusion rooms, children being excluded from school because of inadequate supports, and parents having to pay teacher aides themselves, are just the tip of the iceberg. If you want an insight to just how big this iceberg is, you need only talk to the parents and educators endlessly advocating for these children’s right to access education in New Zealand. And you have an opportunity to do exactly that, this Saturday.

On Saturday November 12th, there will be an Auckland rally following on from the very successful one that took place in Wellington in September. It will be a family-friendly event, held in front of the rotunda at Auckland Domain, from midday to 1pm. (Picnics are welcome!) This is another vital opportunity for us to share our stories—to be heard, to be seen, to be among others who have fought the fights we do every day, and who want to help end those exhausting fights. To share our vision of an education system that not only welcomes and includes all children, but that appreciates and celebrates what they are capable of if only the system was set up to help them succeed rather than watch them fail.

What we want is not impossible, and it is necessary; to have an education system that delivers an education for all.

Speakers will include:

  • Dr. Bernadette Macartney, an advocate, academic and educator, who will be the MC and will provide an introduction to the rally.
  • Etta Bolinger, a self-advocate and academic, providing a disability perspective.
  • Dr. Huahana Hickey, an academic and advocate for disability and Maori rights, providing a Maori perspective.
  • Antonia Hannah, a parent and advocate, and current co-convenor of the Inclusive Education Action Group, providing a whanau/family perspective.

I’ll be there too; not as a speaker, but as a member of the supportive crowd. Please join us.

If you would like more information about how the current system is falling short of its obligations to our children, and what we’d like to see changed, please see “Education for all - Open Letter.” That page also provides a link to videos from the last rally, a link to the petition for change, and a list of the organisations supporting this movement. The Facebook page for the upcoming rally can be found here.

Author: Linda of Autism and Oughtisms.

9

National Standards and the threat to autistic creativity (a little bit of history)

by Hilary Stace

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



[1] Updated for gender neutrality. 

4

Help a kid have a heavy blanket

by Russell Brown

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.