Response to NZ Herald Article "My Autistic Child is Not a Monster"

With reference to a statement issued by the Ministry of Education in recent days regarding a 9 year old child with Autism in Nelson being pressured to attend a Residential Special School 300kms away in Christchurch. The Ministry of Education has described efforts to include this child in various schools in Nelson as ‘exhaustive’. It is IEAG’s view that this description is misleading and that it highlights the need for larger structural and systemic change within the Ministry and within schools more generally. As a lobby group and source of support for many parents, IEAG is only too aware that the case in Nelson is not an isolated incident. So many of the 1% of students categorised as having ‘high needs’, as well as those students due to funding restrictions are unable to qualify as having ‘high needs’, experience similar issues indicating that there is something seriously wrong with the system.

First, we refer to the ‘exhaustive’ input by teacher aides, educational psychologists and behaviour programmes as described by the MOE in the 16th June NZ Herald article “My autistic child is not a monster”. Most teacher aides are untrained and paid the minimum wage. They are not teachers and they are not specialists in teaching children with learning difficulties.  They do not have expert knowledge of behavioural techniques. They are simply expected to sit with the child in the classroom, try to keep them occupied and under ‘control’.  Only when things go (unsurprisingly) wrong may they then be given some advice by a behaviour therapist as provided by the Ministry of Education. The Ministry of Education is often aware of problems well before the behaviour therapist even appears at the school having received phone calls from concerned parents, and sometimes from schools, but the Ministry seems to operate its own system of priority and respond slowly. The quality of input from the educational psychologists is variable; reports, if provided, are largely ‘observational’ and merely touch on strategies. In fact, they often ‘recommend’ that parents and schools ‘collaborate’ to form their own strategies and focus on trying to train the child out of their disability rather than adapting the environment to minimise the stress on the child.

Perhaps by ‘exhaustive efforts’ the Ministry is referring to the efforts they and the schools made in response to an escalated situation. But we ask why was the situation allowed to escalate? Why did the child have to move school in the first place; remember that each subsequent school was new to this child and you have to ask yourself whether each school was truly prepared. What was the effect of moving schools three times in 4 years for the child with Autism on adapting to a new environment? It is our experience that Ministry practise is to deal with issues on a case by case basis as they arise, acting in response to escalated situations and not laying down the foundations for inclusion within NZ schools. We see proactive change to the infrastructure of school life as the key to achieving an inclusive school system; firefighting is simply not working. We demand that schools are required to develop an inclusive ‘consciousness’ which enables every aspect of school life to be considered in terms of those students with diverse learning and behavioural needs.

The Ministry of Education claims that they seek a ‘collaborative’ relationship between schools and parents, inferring that they do not work together. The reality is that students and parents come and go. Schools and the Ministry stay so that the relationship between schools and the Ministry is enduring. Each year dysfunctional systems are further cemented. Unsuspecting parents step into a system they think they can trust but it is a system not designed to protect them or their disabled child. Often parents turn up to Individual Education Plans (meetings held twice a year if you are lucky; a one hour timeslot to determine services, curriculum goals, long term goals and achievements) unprepared and ignorant of what they are supposed to be doing. Often one parent, often Mothers, turn up to the IEP whilst the Ministry is at least three strong in number and the school the same. Six people protecting and preserving their way of doing things in contrast to one parent; the balance of power is immediately skewed and whilst the parent seeks to protect and advocate for their disabled child, the school and Ministry seek to protect and preserve their systems. The Ministry of Education even has its own spokesperson; we wish parents had their own team and their own spokesperson!

Schools themselves do not own the task of inclusion. Specialists and external support are not enough to enable students to  learn and interact with their peers  appropriately. Boards of Trustees generally do not focusing on the inclusion of children with special needs and their progress. ERO’s 2012 Report “Including Students with Special Needs” shows that only 15% of schools reported information to their Boards on the progress and outcomes of their students with special needs.  It is our belief that Boards remain unaware of whether their schools are informed and equipped to understand different learning and behaviour needs. We ask “do Boards in every NZ school ensure the annual dissemination of information on those students with different learning and behaviour profiles?” Not just when a child starts school but every year? Have they discussed what their school could provide to those children with special needs? There has been an emergence of ‘Gifted and Talented’ programmes offered in our state schools, but very few programmes offered to disabled children. Dyslexia is estimated to affect at least 10% of children in NZ but very few dyslexia-specific programmes are offered in NZ schools. The provision of the simplest environmental adjustments - buddy systems, visual timetables, appropriate lesson plans - to more complex adjustments such as the structure of the school day itself, inclusive activities or the provision of retreat spaces is either largely absent or available on an erratic basis across New Zealand schools.

Finally, it is our belief that sending a 9 year old child 300kms away to a residential school in Christchurch is not in the best interests of the child. As a lobby group campaigning for inclusive schools we know that research shows us that segregated settings can provide a lower quality education. Further, we believe that children with different learning and behavioural profiles require understanding from the community at large, understanding which will not be fostered if children are not in their community. It is our belief that social attitudes generally still need to change dramatically and that human rights abuses continue to exist as a result of ignorance and misunderstanding. Two cases recently reported in the Herald, “Man kept like Animal” (14 June) and “Autistic Man is locked in isolation for 5 years” (6 June) highlight the issue of continued mistreatment of disabled people and the absence of systems which support understanding and dignity. We note that all parents seek to protect their child and that many parents will feel that any threat to the ‘safety’ of their child must be removed. However, IEAG believe that the requirements of the United Nations Convention on the Rights of Persons with Disabilities have not been awarded sufficient attention and legal enforceability. This has resulted in insufficient environmental alterations and considerations as well as the rights of disabled people taking a back seat in relation to Health and Safety requirements. It is our belief that the rights of disabled people require more consideration, particularly when freedom is at stake and disabled people remain a minority.


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