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

classroom.

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

teachers.

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

overload.

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

introduced:

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 

http://

autismspectrum.org.au/index.php?

option=com_content&view=article&id=632%3Apeople-with-autism-say-qwebelongq&

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

socially.

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.suttons.email@gmail.com

Sincerely,

Michelle Sutton