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On 14 July 1997, in a provincial New Zealand town, a mother killed her 17-year-old autistic daughter, Casey Albury. Suddenly the spotlight was on autism as a policy problem in New Zealand. At that time autism was considered a rare and unusual condition, and if people had heard about it, it was probably because of the 1988 Oscar award-winning movie Rain man. Casey’s mother's trial, and eventual sentence, was a popular media story.  

As the New Zealand story developed, a picture emerged of fragmented and inadequate services and of an exhausted, stressed parent unable to cope with the behaviour of her much-loved autistic daughter. The teenager spent most of her time at Hohepa, a residential facility for disabled people with complex needs, but at the time was home with her family. During a moment of crisis, she was strangled and drowned by her mother. The following year her mother, Janine, was sentenced to four years for manslaughter, but this was reduced after a public outcry.

For autism in New Zealand, the incident was a defining moment as the publicity generated was a catalyst for policy action. The public reaction to the killing forced political attention to this new policy problem of ASD. The Minister of Health, one Bill English, called for information and action, and was surprised by how extensive the problems appeared to be.

An interdepartmental report into ASD services was produced by the Ministry of Health’s David Curry, and Professor John Werry, an Auckland child psychiatrist, undertook an official investigation. Early in his report Professor Werry commented on the importance of parental expertise. He wrote, “If 30 years in medicine and child and adolescent psychiatry has taught me anything, it is that when a parent tells you they think there is something wrong with their child, you had better listen to what they say because they are often right.”

At first it was not clear whether the death of Casey Albury was an isolated incident or indicative of a larger problem, but soon feedback from parents and professionals, surveys and research, confirmed extensive problems around support for people with autism and their families, and many gaps in service provision.

A decade of work began which resulted in the launch at Parliament on World Autism Day, 2 April 2008, of the New Zealand ASD guideline, with hundreds of recommendations based on international best practice of the time for autism. The Guideline acknowledges Casey’s death as the start of the process of reforming ASD services in New Zealand. The bottom line was that there had to be massive improvements so that no other people with autism would be killed.

The reporting around Casey’s death focussed on the burden of caring for someone with high needs, and there was much public sympathy for her mother. The personhood of Casey, as a young woman with her own interests, such as playing the piano, was largely ignored.

A few years later a Nelson father suffocated his baby daughter after learning she had complex impairments. He was acquitted despite complaints from the disability rights movement that this placed a lower value on the lives of disabled people than for other humans.

Last April a Blenheim mother’s short memoir of her life with her disabled adult daughter was published revealing years of severe distress including mutual violence. Donella Knox and her daughter Ruby had previously featured in the media. A month later the mother was arrested for the murder of her daughter with an overdose of medication and suffocation.

In early February this year suppression was finally lifted and the second documented New Zealand filicide of an autistic daughter by her mother hit the media. Reports mentioned the exhaustion and sleep-deprivation of a devoted mother, portrayed her daughter as a complex set of medical, physical and behavioural conditions and suggested it was a ‘mercy killing’ for Ruby. In response local autistic advocates  sought a longer sentence. Meanwhile Donella Knox accepted her punishment and rejected a social media campaign to reduce her four year prison term.

Unfortunately, filicide is not uncommon in the world of autism. The US-based Autistic Self Advocacy Network has named 1st March as a community day of mourning to remember disabled victims of filicide. They have recorded more than 400 instances of parents, family members or caregivers killing their disabled children, most of whom have autism. They have now developed an anti-filicide toolkit resource, and Disability-Memorial.org, a memorial to the people with disabilities who were victims of filicide.

From their website:

We see the same pattern repeating over and over again. A parent kills their disabled child. The media portrays these murders as justifiable and inevitable due to the ‘burden’ of having a disabled person in the family. If the parent stands trial, they are given sympathy and comparatively lighter sentences, if they are sentenced at all. The victims are disregarded, blamed for their own murder at the hands of the person they should have been able to trust the most, and ultimately forgotten. And then the cycle repeats.

This is not a new phenomenon. The Nazi killings started because a father asked the doctors to kill his disabled baby, and the Nazi state found it was an easy way to eliminate the disabled and, soon, other undesirable groups. In 2014 a memorial was unveiled in Berlin to the estimated 200,000 disabled people killed by the Nazis and naming that first child victim.

But of course, killing people, disabled or not, is wrong. Disabled people are still fully human. If we devalue people because of our ableist response to their impairments it is the slippery slope towards devaluing their lives and needs. Some say if such ideas become widespread euthanasia of disabled people would not be far behind.

This does not deny the reality of the battle to get appropriate and timely services and supports, to have people who will listen and provide for both the disabled person and the family carers. Many parents of autistic people endure isolation, stigma, extreme exhaustion and complex health needs of their own. Their caring duties are 24/7. Their children often haven’t the words to explain their needs and act out their pain, frustration and boredom. Caring is heavily gendered with often a single mother relying on a network of women for professional care services, many equally tired from multiple jobs. But in a situation when the highest skills, physicality, creativity, patience and status is needed, caring instead has low value, low pay and usually minimal training. Sheer availability is the main requirement.

There are also a few international cases of autistic adults killing their mothers or other caregivers, and many families live in fear of their beloved child’s violent behaviour.

I have a friend whose situation is similar to that of the Knox’s. She parents alone, and battles for everything. Government and non-government agencies are rarely her friend. Money is always tight and every day and night is hard work. Her daughter has assorted medical conditions and pain as well as autism.

Armies of officials and workers traipse in and out of her house and her life. There are some good and helpful people but nothing is sustainable; a problem-solving person leaves or the rules change. There are some horrible people who help destroy what little she has. But she keeps fighting for her daughter’s rights to live and participate in her local community. Like many of us with autistic adult children, she worries about the future. She would do anything for her daughter – but never kill her. Those who seriously consider murder have gone to a dark place and need urgent help.

There are solutions. Many of us hoped they would have been established following the 1997 murder and the following decade of policy attention. The ASD Guideline had hundreds of recommendations, but only a few were ever implemented. That research is a decade out of date now and global knowledge of autism has moved on, largely based on information provided by autistic people themselves. We need to update and resource data and improve processes and supports, urgently.

Let’s start by developing a well-trained, integrated, professional care workforce with good pay, conditions, and career progression so it becomes a desirable highly paid career. Let’s have lots of quality respite options, for parents/carers and their children across their lifespan. Let’s encourage and facilitate the participation of disabled people with so called ‘high and complex needs’ in the community, in neighbourhoods, schools, shopping centres, enterprises and recreation facilities so they become known as real people, with interests and personalities. Government and other agencies (and society as a whole) need to see and treat disabled people and families as more than inconvenient expenses. We all need to heed the advice of autism advocates. And as Professor Werry said two decades ago – listen to the parents.

That is how we can honour Ruby Knox and Casey Albury.

Dear Russell,

New Zealand's Archive of Film, Television and Sound, Ngā Taonga Sound & Vision is currently considering a proposal to close its offices in Auckland and Christchurch and centralise all its activity in the Wellington region.  This includes moving the sound collection, (the former Radio New Zealand Sound Archives) from Christchurch to the TVNZ Archives site at Avalon in the Hutt Valley. This would see the loss of seven staff roles in Christchurch and three in Auckland, and potentially the loss of all senior sound archives staff who have over 50 years' combined institutional knowledge of this national treasure which has been based in the South Island since the 1950s.

The Sound Archives are home to the voices of our past – Aunt Daisy, Sir Apirana Ngata, Selwyn Toogood, the Māori Battalion – historic voices and events captured on radio form part of Aotearoa New Zealand's collective memory. 

The proposal raises a number of concerns, especially as it appears to be proceeding without professional risk analysis or adequate input from the wider cultural heritage sector.

• The proposal breaks commitments made in 2012 by Radio New Zealand and the then Minister of Arts, Culture and Heritage, Chris Finlayson, not to use the earthquakes as an excuse to take heritage out of Christchurch.

• Since joining NTS&V the Sound collections (RNZ Sound Archives/Ngā Taonga Kōrero) have been neglected and there is a lack of transparency around funding that was formerly ring-fenced for the Sound collections.

• There is a potential loss of Ngā Taonga Kōrero’s close connections and trust of iwi radio stations and other donors. 

• This rushed proposal could result in a disastrous loss of all the institutional knowledge of the Sound collections in Christchurch and in Auckland, due to staff not wishing to live in Wellington, an area of increased seismic actively.

Sound Archives was founded in 1956 in Timaru by the New Zealand Broadcasting Service. The first professional archivist was not employed until 1996. The first full-time cataloguer was hired in 2007. The collections are imperfect in so many ways. Sound archives are often fragile and incomplete and the finding aids are also far from systematic or comprehensive. While parts of the collection are relatively orderly, other parts are almost impenetrable without the institutional knowledge of experienced staff. The Ngā Taonga Kōrero (NTK) collection in Auckland grew out of Radio New Zealand's Te Irirangi o Aotearoa collection and the growing network of iwi broadcasting in the 1980s and 1990s: Te Whakaruruhau o Nga Reo Irirangi Māori.  
 
The underlying logic of the proposal is simple: we need to save money therefore send everything to the Wellington region. Unfortunately, this kind of short-termism is the antithesis of archival best practice. 
This effectively puts all New Zealand's media treasures into one regional basket. With the challenges of climate change and the apparent increased level of seismic actively in the Wellington region this is a high-risk strategy.

The implications of climate change are massive. The Avalon archive is in an area easily cut off by floods or storm surge events. There is a lack of alternative routes if flooding or large landslips occur. While the Avalon archive is a modern design, if staff cannot access it, urgently needed archival material could be unavailable for weeks or months.

In the 2011 Christchurch quake, the RNZ Sound Archive found itself inside the CBD no-go cordon, located as it was in Radio New Zealand House on Chester Street West.  Eventually staff were permitted to enter and recover the entire collection to its current 'temporary' home in Cashel Street.  The relocation of nearly 90,000 fragile discs, tapes, CDs and

cassettes was a massive task,  but the move was a success and the Christchurch staff were internationally recognised for the way in which this was carried out.

The 'temporary' home is certainly not ideal, but it is safe and has allowed work to continue on collecting and digitising our national audio treasures for the past four years.  Canterbury has lost so much of its cultural heritage, so the hope was that a new, permanent Christchurch home would be found for the Sound Archives to guarantee its future and continue its 60 year presence in the South Island. It might be one-eyed, but the question has to be asked, Why should Christchurch lose yet another national treasure to help pay for earthquake strengthening for a building in Taranaki Street, Wellington? 

Our quake experience adds weight to the concern that if there is a sizeable quake in Wellington, the CBD there will be closed for months. Landslips and subsidence of the Hutt motorway may cut off the Hutt Valley for a similar period. From a seasoned Christchurch perspective, a big quake in Wellington would be far more destructive and disruptive than the Canterbury earthquakes and the region's geographical challenges mean recovery could take even longer.

While it may be uncomfortable for many Wellingtonians to hear this – despite all the warning signs, we are seeing an alarming lack of earthquake preparedness in Wellington and other parts of New Zealand
Building a robust and sustainable organisations starts with appropriate decision making, where people have a say in their own future and their immediate living and working environment. We certainly hope management and the board of trustees address the issue of sustainability and bring it to bear in their planning.

The risks of putting all the nation’s audio-visual archives within the Wellington region needs independent professional analysis. Recent tectonic and weather events have once again called into question the wisdom of centralising so much of New Zealand's government infrastructure and cultural assets in one vulnerable region.

Kindest regards,

Aunt Daisy

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Change proposals, original dates,  new dates

Proposal announced and consultation period begins    7/11/16   (no change)
Interim update meeting (if applicable)    16/11/16   (21/11/16)
Consultation closes    Midday 23/11/16    (Midday 29/11/16
Consideration of all feedback    24/11/16 to 2/11/16    (29/11/16 - 7/12/16)
Final decision announced    5/12/16   (8/12/16)
Consult on position descriptions for new roles    5/12/16 to 17/12/16   (8/12/16 to 17/12/16)
Final position descriptions and selection criteria for roles available    23/12/16 (no change)

Proposed implementation activities

New structure implemented    01/12/17   (no change)

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

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.

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 12^th, 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.