Mother’s navigation through the challenging education system

Joanne Dacombe

22 December 2017 – Education borne of both her personal experiences and those of her autistic child in the education system is one of Joanne Dacombe’s areas of passion.

I FOUND the education system unaccommodating to my own needs due to being hearing impaired and undiagnosed as autistic.

However, the education system was just as difficult to navigate for my son diagnosed with additional learning needs of autism, attention deficit hyperactivity disorder (ADHD), and dysgraphia.

Even with formal diagnoses there was no special assistance provided; no teacher aide, no Resource Teacher of Learning and Behaviour (RTLB), and no additional supports to help with some of his health needs.

There was also a lack of understanding of autism.  The whole process created a huge amount of stress for our child, as well as for us as his parents.  For many parents this scenario ends up leading to withdrawal from the school system and home schooling, something I was not sure I would have the executive functioning to do.

Our experience led me on a journey – a journey to try for improvements in a system that seems to largely ignore us.   It might seem harsh to make that statement but only one percent, of an estimated 24 percent of children with additional learning needs, are eligible for Ongoing Resourcing Scheme (ORS) funding.

“I am concerned that many teachers are poorly equipped to recognise autism and, more importantly, autistic needs in the classroom.”

This funding provides specialist services and support for students with the very highest needs for special education. It helps students join in and learn alongside other students at school.

There are other avenues for assistance but many parents are not guided through these so are not aware of them.
The special education area is very challenging to navigate.  It encompasses huge bureaucratic systems, tons of jargon and acronyms.  There are RTLBs, IRF (Interim Response Fund), HHN (High Health Needs), and the Intensive Wrap-Around Service (IWS), for example.

The language also changes –for example the new term for special education is learning support. The people also change, notably teachers, specialists, schools, learning support, and Special Education needs co-ordinators (SENCOs), for example.  Add being autistic on top of all that and you can see why many autistic families struggle to get needs met.

There are many areas to navigate: preschool, primary school, intermediate, high school and even university. Transitions are hard for autistic children and also for many autistic parents, many of whom remain undiagnosed themselves.  This is complicated by the different challenges such as additional learning needs being ‘discovered’, transitions and then different services such as speech language therapy, in each of those domains but also varying in different regions throughout New Zealand.

My efforts to try for improvements in the education system

I attended Ministry of Education (MOE) Learning Support forums, called “Success For All”, where MOE staff promote and discuss some of the projects they have in the pipeline.

Some of the projects are:

  • the Bay of Plenty pilot around a single point of entry for Learning supports
  • extending the Bay of Plenty pilot out to 30 more locations
  • the Dispute Resolution Process currently being trialled in Auckland, Manawatu and Nelson
  • new approaches for Learning Support
  • better Insights which is about the MOE looking to develop a vision and plan around the data it collects and uses for learning support Strengthening Support for dyslexia, dyspraxia and autism around teacher capability
  • New Approaches to Behaviour Support

It is an opportunity to talk directly with the ministry at these forums.

I am concerned that many teachers are poorly equipped to recognise autism and, more importantly, autistic needs in the classroom.

My daughter and I once ran a presentation for teacher aides at my son’s previous primary school, at the request of one of his previous teachers who was now the SENCO.

The talk was very well received and we then ran the same presentation for teachers. Later the SENCO hosted presentations by professionals in the field for other SENCOs in our region.  She also undertook to send teachers for training in autism.

I was encouraged to make a submission when the Education Council was undertaking consultation around initial teacher training.  Their work has since been expanded to look at all teacher capability across the board. I await the increase of knowledge and capacity that needs to happen.

Autism New Zealand is active in the education space – often providing training to Early Childhood Centres, teachers, and parents who choose to attend professional development in this area.

I wish I had known of them in the early days of our journey as they provide a valuable resource with outreach coordinators, as well as education training programmes.

Instead, like many parents we had to learn to muddle through. Even today, many parents are not told how to navigate the complicated system, have little idea about school policy – which can vary from school to school, and have no idea about how to access the information they need or the help they may feel their child requires.

GPs and specialists often neglect to refer children to autism organisations such as Altogether Autism, which has a government contract to provide information, or Autism New Zealand, to enable parents to receive real practical help on their journey.

I think many doctors make the assumption the children they see before them will get support in school via a teacher aide, when the reality is that may not be likely.

This lack of real support is not only frustrating for students and their families but often results in an escalation of autistic behaviours, such as meltdowns, which can see students face ‘kiwi’ suspensions, stand-downs, and finally expulsion from a school.

Autism New Zealand frequently deals with suspensions of young students because of a lack of knowledge and accommodations by schools towards autistic students.

We – students, their families, and their peers – all deserve better if we are serious about a truly inclusive society.

Autism New Zealand outreach coordinators are prepared to go into schools to educate, to advocate, and to provide some real strategies around accommodations that students may require.

As a disabled person I am involved in Facebook forums such as VIPS – Equity in Education whose members are active in education advocacy.

I am involved in offline forums like Education For All – a group of advocates who believe in inclusive education across all sectors: pre-school, primary, intermediate, high school and universities/polytechnics. Inclusive education is not the same as mainstreaming which often ends up as ‘main-dumping.’  It is about meeting the needs of all students in the education system with resourcing, training, and funding.  The needs may not be equal but all students deserve the equal right to be fully engaged and to fully participate in their education for as long as they want.

The members of Education For All come from a range of perspectives; the group includes school principals, school trustees, disabled people, organisations connected to disabled people, and so on.

Joanne Dacombe has spent 21 years working at the Reserve Bank in the area of monetary policy. She was diagnosed with autism later in life and has a son on the Autism Spectrum. Joanne currently services on the Board of Autism New Zealand as well as the Board of the ASK Trust, an autistic-led organisation for autistic adults.

Useful documents and websites

Barriers to Education in New Zealand: The Rise of Informal Removals of Students in New Zealand, Jen Walsh, 2016
Challenging The Barriers: Ensuring Access To Education For Children With Special Educational Needs, Kenton Starr and Naushyn Janah, 2016


This article first appeared in the Altogether Autism Journal Issue 1, 2018.



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