Monday, July 30, 2012

An Open Letter to Members of NSW Parliament

As many of you who read my blog know I have been working hard to help people understand the impact recent changes by the New South Wales Government to disability support funding -ironically named "Every Student Every School"- will have in schools and on children with extra support needs. To this end I have sent copies of the following letter to many NSW politicians, including the Premier and the Minister for Education and their counterparts in the Opposition. My letters have been all but ignored by all. My local Member responded in a one sentence letter by thanking me for making her aware of my concerns!!! 

I have decided to publish my letter now as an open letter to all NSW Politicians. I am doing this for 2 reasons- 
1. to continue in my efforts to raise awareness about this situation, and 
2. so people can see what sort of appeals our politicians are willing to dismiss when they make decisions for the governments financial benefit that impact our children. 

I have learned more now about this funding model, and if I were writing now there would be  a couple of things I would change, and a few things I would add, but here is the letter I sent 2 months ago....

Dear Members of NSW Parliament,

I am writing to you to convey my disappointment with the changes to Disability Support
Funding your Government has introduced, and to ask you and your Ministers to reconsider
the “Every Student, Every School” funding model. Both the reasoning behind the changes
and the implementation of them are flawed as tools to provide support for children with
disabilities who are mainstreamed in public schools.

Before I continue I would like to tell you a bit about my experiences in order to help you
understand why I am so passionate about this matter. As a young woman I gained a
Bachelor of Teaching. I worked as an Early Childhood Teacher. My last job in the Child
Care Industry was Director of a 54 place Long Day Care Centre. I left the industry to be a
full time mother. I now have 5 children aged between 16 and 5 years, 2 of whom have
Autistic Spectrum Disorder. I am currently half way through studying a Graduate Diploma
in Psychology by Distance Education. I have taken the year off from study this year, in
order to spend the time supporting and preparing our youngest daughter, who is Autistic
and has Sensory Processing Disorder, for her entry into Kindergarten at our local public
school next year.

My family’s experience with the public education system has been largely positive. Our 3
“Neurotypical” children have all had good experiences and achieved well both socially and
academically. We have had the privilege of knowing many dedicated, hard working
teachers who have helped our children develop a love of learning.

I would like to be able to say that the Public Education System I value so much has served
all my children well. However, our son, who has Aspergers Syndrome, has struggled over
the years with school, largely due to his social awkwardness and the lack of understanding
of this from teachers who do not know about Autism Spectrum Disorders. The fact that our
son has a diagnosis on the Autism Spectrum has so far entitled him to receive funding for
some extra assistance in the classroom. This has been in the form of a Teachers Aide.
The system we navigated as my son went through primary school was mostly
behaviourally based, and required parents and teachers to justify to the Department of
Education why the child needs extra help, and in what areas. This meant that when he
was well supported, he behaved well, which resulted in us not being able to tick the boxes
that allowed the funding to continue at a level that provided the amount of support he
needed to continue behaving well. And at times, when he was not receiving adequate
support, he still managed to behave in a way the school found acceptable by internalising
his anxiety and distress, but when he got home we could tell by his behaviour that he was
very unhappy.

I am a member of numerous support groups for parents of Autistic children. The comments
I hear from other parents daily validate my experience, and bring up many other issues
besides. They say that funding takes so long to appear. That teachers do not have the
education and training to help ASD kids. That they feel like their child is treated like a
number, rather than a person. That the funding in schools is not enough and that the
schools are forced to pool money from many children in order to get the staff they need,
but that the result is that none of the kids truly benefit from the funding that should be
theirs. That funding is made available but it has restrictions on what it can be used for and
these restrictions often mean the child misses out on things they need most. That they
actually don’t understand the system and wish it was more transparent. That they want the
schools to be able to explain to them what happens with the money and that they as
parents want to have a say in how it gets spent on their child. That they feel like the
teachers are so stretched they don’t have the time to really listen to the parents and learn
all they need to know about the children to support them. That they want a uniform system
across the States and Territories so that if they have to move they don’t have to learn a
new system and language to get the help they need.

The comments I hear from teachers weekly are that they need more support and training.
That they need more funds made available to purchase equipment like sensory specific
classroom aids and toys so that they or the parents don’t have to buy them. That they feel
alone in their struggle to find information they need to help ASD kids cope and learn in the

The experience I have had with my son’s schooling, and the experience others have
shared with me, tells me that I need to go to the school my daughter will attend next year
and tell them all the worst things about her in order for the boxes to be ticked that will get
her a Teachers Aide for some of the day. It means that I have to ask the Director of the
Preschool she attends to complete a report about the level of support my daughter
receives while attending the Preschool. It means I have to find the money to pay for a
Psychologist to get to know my daughter, and that I need to pay the Psychologist to come
to the school and meet with the Principal and Teachers to help them get ready for my
daughter to attend. In fact, I have already started this process.

The fact that I have to put so much effort into the preparation for my daughter to go to
school could make people think she is quite severely Autistic. Actually, she is on the more
high functioning end of the spectrum. She is intelligent. Preliminary IQ testing indicates
she is smarter than I am. She has significant difficulty with communication, however, as
she does not understand non verbal communication or learn social conventions as easily
as a Neurotypical person does. She also struggles with being around people as a result of
her Sensory Processing Disorder. Her sensory system does not work like mine does. She
exists in a heightened state of arousal due to the fact that her body’s responses are
dominated by the part of her nervous system that initiates the “Fight or Flight” response. A
psychologist once explained to me that for my son and daughter an unexpected bump on
the shoulder can trigger in them the same reaction that would be triggered in me if I was
involved in a car accident. This can lead to behaviours that appear like tantrums over
seemingly small things. It can lead to what is known as Sensory Overload, which can
cause my daughter to either lash out physically or run and hide until she feels calmer. As
challenging as all this is, my daughter would not be appropriately placed in a “Special
Needs” Class (even if we could find one that had room to take her). The only option we
have for her education in a class room is for her to attend a mainstream class with her
peers. We have chosen a school we are happy with, where my son with Aspergers did
very well. Yet we are still concerned about the level of support she will require to do well
there, and the process we have to go through to get that support, both for her and for her

It is concerning that while statistics are being released in the USA saying that 1 in 88
children have ASD, that there is no specific training and support being provided for
teachers in our schools helping them to learn about ASD and the impact it has on
education. I know numerous teachers learning by trial and error how to support children in
their classrooms. Teacher Aide time is metered out in hourly increments and schools have
to decide how to use it. They sometimes have to choose between keeping a child
physically safe in the playground or supporting them to learn in the classroom. My
understanding is that in NSW this is all about to change with the introduction of the “Every
Student, Every School” Initiative.

The NSW Government would have us believe that they are introducing a more equitable
system that will serve all children in the Public School System equally well. I am not
convinced! As a result of the changes scheduled to be implemented by the NSW
Government shortly, our school is losing $40,000 of "learning and support funding".
Because the NSW government decided to assume that 1 in 100 students in NSW schools
has a disability, and is funding for those numbers, and because they also take into account
NAPLAN scores, our school of 150 students (whose teachers have worked tirelessly to get
the schools NAPLAN score improving) is now being punished for doing well and for only
having a relatively small amount of students. Two of the things that make the school so
appealing to me as a place for my Autistic daughter are going to work against the great
staff who will be doing everything in their power to support her.

The front page of the NSW Government document outlining which school get what amount
of funding states that

"Each regular school receives a base allocation for learning and support. This reflects the
size of the school and the learning and support needs of students. Any changes in
allocations between the previous year and this year have been carefully considered and
reflect changes in:
• enrolments at the school
• learning needs of students as determined through literacy and numeracy data"
There are 2 big problems with the reasoning behind the Governments policy:

1. Basing funding for children who have a disability on their literacy and numeracy
outcomes shows a complete lack of understanding that some disabilities don't only require
learning support, but also (a) social support to help them integrate into a system that
requires their social conformity to be able to get the most from the setting, and (b) sensory
support to allow them the resources they need to cope when they experience sensory

2. In small schools, it is a statistical fallacy to assume that the number of actual disabled or
Autistic students will reflect the average incidence of disability or Autism in all schools. The
small size of some schools means that it is statistically expected that some of the small
schools will have many more actual students with disability than expected if you merely
use the global average to make a prediction. As a case in point, it is the small size of our
school that makes it attractive to parents of children with a disability. The NSW
Government says they are making things more equitable, but basing their funding on an
assumption that 1 child in 100 has a disability fails to take into account that it is possible
for a school with 150 students to have 3 or more disabled or Autistic children attending,
and seems somewhat shortsighted to me.

Even though the system we have been using has it’s flaws, the new system will be worse
for my children. There are 3 main problems with the implementation of the changes being

1. No individual funding means that if I have to move my children to a different school,
there is no funding to go with them. Under the old system their support funding
automatically followed them to a new school. Now they will have to turn up at a new school
with no extra funds for the school to support them with. And because, as I understand it,
the new model only allows for schools to have their needs reevaluated once every 3 years,
the new school would most probably have all their funding allocated to children already
attending. This changes the arrival of a child with extra support needs at a school from
something relatively easy to manage to somewhat of a financial liability for the new school.
I don't like the idea that my child will be unwanted because s/he needs extra support that
the school can't give due to lack of finances.

2. From the discussions I’ve had with people affected by these changes it seems the
government has removed a few different categories of funding and replaced it with one
lump of money to be given to the school that the Principal has to use to cover everything
that all the smaller amounts used to. The lump amount is generally less in practical terms,
even though the Government has managed to make it look like more (in most cases) in the
document they published. Then I have to wonder- if most schools look better off on paper,
but are actually going to struggle to make ends meet to provide a similar level of support,
what is going to happen in our little school that is actually worse off on paper?

3. Due to the fact that there is no specific ASD training provided to teachers or teachers
aides (the few that will remain) it will be very difficult for schools to know what resources
are appropriate to provide for our children. This means that either a) ASD specific
resources will not be provided or b) if schools want to know what to provide, they'll have to
employ the services of other professionals (Psychologists, Occupational Therapists, etc) to
help them with this- and that will be paid for out of the money that the Government says
will cover the cost of supporting the kids.

I implore the NSW Government to listen to the parents of Autistic children and the teachers
of Autistic children as decisions are made and policy is developed around funding for
children with extra support needs. A recent study undertaken by Autism Spectrum
Australia, or ASPECT (ASPECTs summary of the study can be found at this web address 
catid=94%3Amedia-releases) has shown that the main things adults with Autism
express as ongoing support needs are help with social interactions, help finding a job, help
accessing leisure and social activities, dealing with bullying and discrimination, and
accessing professional services. The study also found

that educational experiences for people in this group are characterised by social isolation, failure to meet learning support needs, harassment and bullying which results in years of struggle with ongoing mental health issues”.

The study supports parents concerns by confirming that experiences in school do
influence outcomes for their children as adults, and states

“Being able to access disability funding is the key that will provide the opportunities this group of people require to reach their full potential and be healthy, socially connected citizens who are employed and actively contributing in their communities”.

Our children are capable of so much. They are no less than any other child. We need the
Government to support us in helping them to reach their potential by providing adequate
funding that meets our children’s real needs. Please resist the urge to consider the
statistical averages and make decisions based on numbers.

Our children are not numbers.

My daughter is Autistic. She may be 1 in 100, but she is so much more than that. In our
house she is one of 2 in 5. Her name is Grace. She is compassionate, intelligent and has a
keen interest in knowing how the body functions- especially how it heals itself. She is 5
years old now. One day she could be a surgeon. Please help her by providing the funds
for her school to give the support she needs to succeed both academically and socially.

My son is Autistic. He may be 1 in 100, but he is so much more than that. In our house he
is one of 2 in 5. His name is Liam. He is quick witted, honest, hardworking and has great
integrity. He is very interested in microbiology and DNA. He is 13 now. One day he wants
to be a scientist and discover something really important. Please help him by providing the
funds for his school to give the support he needs to succeed both academically and

My voice is only one of many thousands of frustrated parents. Raising an Autistic child is
not an easy task. Until you have done it there is no way you can understand the expense,
the tiredness, the stress, the worry and the grief. We are not exaggerating when we say
we need the Government to help us with this task. We are not being dramatic when we
say the current system is letting our children slip through the cracks, and the incoming
system will be worse.

Autistic children who are attending mainstream schools often are very intelligent.
Measuring their need for extra support by looking at their NAPLAN scores is like
measuring a fish’s intelligence by its ability to climb a tree. Most mainstreamed
Autistic children need support in the areas of social interactions and sensory
regulation. These two things are key to their success in coping with the school
environment, and if the Government is serious about providing equal opportunities
for all students they need to address the need for Autistic children to receive
support in these areas. This will need to involve funding for teacher aide support for
the children, and training for the teachers aides and classroom teachers in Autism
specific strategies. Some Autistic children do need help with academic activities,
sometimes due to Autism and sometimes due to other conditions they have along
with Autism. This also needs to be addressed more effectively, as strategies to help
these Autistic children will need to encompass their need for social and sensory
support as well. In reality, if the need for social and sensory support are not
recognised I don’t think it matters if parents have to attend meetings to justify the
amount of extra funding their child needs or not, as failing to recognise these needs
will ensure the funding provided will never be adequate to meet the real needs of
Autistic children.

Thank you for taking the time to read my thoughts on this matter. I have agonised over the
words, and now send them to you hoping that I have been able to convey to you just how
important this is to me and my family, along with many other parents and children. I would
be happy to speak further to any of the points I have made, or to answer any questions
about what I have written. I can be contacted by email at

Michelle Sutton

Friday, July 13, 2012


It's been an encouraging week for me in the area of "Activism".  My local paper should be publishing a story based on a letter I wrote them about the NSW Governments "Every Student Every School" funding changes, and I've been in touch with some people who are just as fired up as I am, and there are some good things happening!

I'm now happily a member of a newly formed group called "Families Against Disability Discrimination (FAMADD)".

I'd like to share with you some information and an event organised by FAMADD, this coming Sunday.
I'll be doing my utmost to be there, despite the short notice!!  I hope to meet some of you there too.

The O’Farrell Government has cut funding to support students with disabilities in 272 schools across NSW. Here is the list of schools affected -

These cuts take effect from the start of Term 3 – that’s next Monday July 16!

Hundreds and hundreds of students in primary and high schools will be affected, leaving them without the classroom support from learning support officers (also known as 'teachers aides'). Our learning support officers are losing their jobs or losing hours of work.

Parents fear that the result is that students will learn less, will be subject to greater isolation and bullying and ultimately be at greater risk of alienation at school and as young adults in society.

So we need you, your families, friends and neighbours this Sunday!
Come to a Rally & Press conference!!
Sunday July 15
the Graham Green
(The park next to Dulwich High School of Visual Arts and Design, enter via Fairfowl St, off Marrickville Rd) 
Dulwich Hill, Sydney

Why is this happening?

The NSW Government has changed how disability support is funded so that it is based on a formula that combines the school’s NAPLAN results, general prevalence of autism in the local community and school enrolment figures.

But a student’s individual needs will not be taken into account and this is unfair.

It could also be discriminatory - the Disability Standards in education in the Disability Discrimination Act, require “schools to treat students with disabilities on the same basis as students without disability”. How will students with disabilities be treated on the same basis if they don’t have the support to participate in the classroom?!

What we want

1.     Immediate reinstatement of the lost funding to the 272 schools (but not at the expense of the schools that have benefitted from recent additional funding).
2.     A revised funding formula that does not disadvantage any student with a disability and guarantees that now and in the future, every student will receive the amount of funding that is required to meet their needs.
3.     An increase in the number of permanent Learning Support Officers to retain experience.
4.     A register of Long Term Temporary Learning Support Officers to enable schools to source experienced Learning Support Officers.

This rally and press conference is being organised by the Public Service Association (PSA) representing learning support officers, along with Families Against Disability Discrimination (FAMADD), a group of concerned parents and supporters.

Saturday, July 7, 2012

Dear 50 Cent

Dear 50 Cent,

your recent tweet of "Yeah just saw your picture fool you look autistic" in response to a person who was rude to you makes me want to ask you a question.

Which of my children looks Autistic to you?

I'll give you a hint- you can choose two of them. Yep, that's right. Two of my five children are Autistic. And since you know what Autistic looks like, I'll bet you can tell which ones, right?

Oh, and in response to the comment you made about not wanting special ed kids on your timeline.....  I thought you should know that neither of my Autistic kids are in "special ed" classes. They do need a bit of extra support socially and for sensory issues, but they are both bright kids who are progressing very well academically.

Can you see why your comments were so offensive? Just in case you can't, I'll explain.

You see, in a society where governments think it's ok to take away the funding that supports our kids in their education, and in which juries acquit parents who are known to have caged their Autistic children, our kids could use the help of celebrities like you. But instead of help you gave them small minded, incorrect, stereotype based criticism. In front of more than 6 million twitter followers.

I am glad you have removed the comments. But you know what? All removing them does is make it look like you want the whole situation to go away. I think Autistic people deserve better than that. While your comments are in no way a reflection on them, they are an insult and an offence. Whether you realised it or not when you made them, your comments were hurtful. I teach my children that when they hurt someone they need to apologise in order to restore the trust in the relationship. I'd like to suggest that you should do this too.