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Special Needs Special Children

If you’re looking after a child with special needs, it is easy to get hijacked by the ‘professionals’. A solo dad with boys who have Aspberger’s Syndrome/Autistic Spectrum Disorder gives advice on how to cut through the jungle.

I am still to this day haunted by the after thoughts of working with a colleague in the London Ambulance Service who had just lost his son through leukemia.

As a young childless male I thought he needed to get over it and start coping with the huge demands of the London service. I used to get frustrated working with this guy – now I want to make contact with him to hug him. Having now confided that with you, I know there are many of us out there that have been on both sides of a story like this.

I‘ve been on my former colleague’s side, plus I have given up tears over the snide and well meaning remarks from do-gooders, ‘friends’ and rellies about my boys.

I know they are trying to reassure me but their comments often left me cold, as a result I no longer have contact with many of them.

It may surprise you but the most hurtful comment given to me was that my boy will be alright, often said in response of me warning them about him when visiting someone. “Oh he’ll be alright”. That comment I found the most hurtful. I wondered:

Were they just being polite?

Who said my boy will be alright?

What did they know I didn’t? That was not what specialists had told me.

Were they embarrassed or simply felt uncomfortable around my boy?

As a result I never trusted the care of my boy to such people! How could I? They hadn’t taken his condition seriously had they?

To those that are new to the ‘game’ of special needs there are many abbreviations, services and organisations to learn. Here’s a few:

What qualifies as a “special need”?

Basically any child who:

has a disability of any description.

requires ongoing medical support.

has a learning problem (regardless of whether getting assistance).

has not yet been diagnosed but someone feels there is something wrong!


Before you get a diagnosis, and certainly before entering school, you will need a WISC test done (Wechsler Intelligence Scale for Children) – or better still a Woodcock-Johnson test. Who does these tests? Again, it depends where you live in New Zealand, but I recommend SPELD.

It is important to get an official diagnosis for your child. Don’t let anyone put you off with “why give them a label”. A diagnosis can be done with only one parent’s consent and will entitle you to a Work & Income Child Disability allowance (CDA) – currently $80 per fortnight. This is separate and different to the plain Disability Allowance which is means-tested. And yes, you can get both.

Whether you are using the CDA form for WINZ or not, keep a copy of the diagnosis certificate page as that is the only form of registration of your child’s disability in New Zealand. That copy is necessary for many other purposes including being given to the school which has to treat a special needs child differently.

Many parents will go through the public health hospital service’s pediatric sections to get a diagnosis. My experience is that they are slow and painful and, to put it bluntly, often useless. My suggestion is go private and claim your expenses back through the CDA.


You may be eligible for respite care. Each area has its own agency to deal with that and your GP may know who they are, as should the specialist making the diagnosis. There are three agencies to deal with – the assessor, the authoriser and the payer.

They are all part of your local hospital, but claim to be different organisations! By the way, each of them takes their cut off the respite amount given by the government!

Mainstreaming v Special schools

Do I send my child to a special school or will they be normal if I mainstream them? This topic I have seen lead to near fist fights and a meeting having to be called off. Jill Weidenbohm, principal of Patricia Ave Special School in Hamilton, says “it is not the environment that our special needs children learn in that should be focused upon but the curriculum”.

In New Zealand 82% of special needs children commence schooling mainstreamed (Primary) – 35% commence secondary schooling mainstreamed. My own experience agrees with the stats that mainstreaming is mostly ‘main-dumping’ and does not work in the majority of cases. There has been a massive push in the last decade to mainstream with the result that special school rolls have over doubled in that time!

I was told that my child would badly role-model off other special needs children at a special school and wouldn’t gain skills to socialise etc. Rubbish! At mainstream schools, my experience is that they get bullied too much and badly role-model off naughty children or get patronised.

The major requirement for special needs children is therapy and that is pretty well non-existent via GSE (the Ministry of Education’s special needs support) in a mainstream school. At a special school it is on tap. And remember it is the curriculum that will grow your child, not the environment.

As an advocate I was appalled at the amount of parents who took to a school on the basis of a shady tree or the colour of the buildings. Your focus should be on what the school can do for your child.

And what about socialisation? Is that the education system’s responsibility? Many parents believe so but, sorry folks, I say that’s your job.

I received many terse retorts from parents about how mainstreaming was working successfully for their child.

In most cases, after delving into that child’s progress, I found the opposite. However it is a personal choice – I merely state my experience here. But I leave you with a thought – instead of stating “I know what’s best for my child” consider a new paradigm: What is it my child needs?

Schooling – Funding

This is the area that divides all special needs children and their families. You either get funding or you don’t. A crazy – and what I believe illegal and immoral – system of funding was introduced in 1999.

It was on the basis that a child at Queen St School in Auckland will get the same services as the child at Kermadec Island School. Therefore they receive the same funding. But the services aren’t the same in each of those areas to use that funding the same way!!

The funding comes through ORRS (Ongoing Reviewable Resource Scheme). It has goalposts that get shifted dependent on the funding allocated and the number of special needs children needing it, so a “criteria” is created. A criteria is whatever they want to make it so there is a cut-off. Sadly that cut-off is at about a mere 1% of special needs children in New Zealand. So if you get ORRS funding you can do OK, without it, get in a boxing ring.

Schooling – Services

Now for those coming out of the Kindergarten system, remember that the GSE support for Kindy does not carry over to school (although it may do just briefly). It gets a lot harder in the school system to get support if you are not funded.

Also remember a teacher aide is not a qualified teacher nor a therapist.

Each school has a SENCO (Special Education Needs Coordinator). This position is given to one teacher at each school and, like other liaison roles, does not mean they are a qualified special needs teacher.

Also be aware that some teachers who claim they are ‘experienced’ in special needs often are only experienced in one or two other special needs children in their career.

Each Ministry of Education region in New Zealand also has a Special Education Facilitator (SEF). These are troubleshooters, and feel free to contact them. They are separate to GSE and are, in my experience, very helpful and resourceful.

Do they have to take my child?

Under the Human Rights Act 1993 Section 60 there are lawful exceptions that allow a school (including your nearest) to not accept your special needs child if it is unreasonable for the school to provide the special services or facilities needed for a student with disabilities to participate in the school’s educational programme, or to gain substantial benefits from it.

if a person’s disability poses a risk of harm to that person or others. This exception only applies if the school cannot take reasonable measures to reduce the risk, without unreasonable disruption.

It is for the educational establishment (not the parent) to prove that reasonable efforts have been made to accommodate the person’s special requirements.

Schooling – Planning

You are entitled to an IEP (Individual Education Plan) for your child. This hour long meeting is utterly vital. Regard it as you would your child having a major operation! You should not go into this meeting alone or allow the school to set the agenda for it.

Make sure you attend an IEP with a current WISC or Woodcock-Johnson test and make that test report the basis for the outcomes. Also bring GP and specialty reports to that meeting.


Finally, I recommend to join an organisation applicable to your child’s condition. It is easy to become self-focused and reject support. Less than a decade ago I would openly go up to a special needs family in public and yak for hours, compare notes and often leave with a contact – not today!

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