Submission 71 — Name Withheld — Inquiry into support for autistic children and young people in schools | External submission

PARLIAMENTARY INQUIRY:

Inquiry into support for autistic children and young people in schools

Education and Health Standing Committee

The Education and Health Standing Committee will inquire into support for autistic children and young people in schools.

In particular, the Inquiry will consider:

The prevalence of autism in WA and projected demand for support in schools.
Current support available for autistic students in WA schools, including consideration of how: a. evidence-based practices are implemented across the school system; and b. school supports are co-ordinated with other service areas to respond to the needs of autistic students and their families.
Strategies in other jurisdictions that support school systems to respond to the needs of autistic students, and the applicability of those strategies to WA.

I write in response to the above-mentioned inquiry.

My Grandson, now 8years and 4months of age, was diagnosed with Global Development Delay (GDD) at around 2 years of Age.

At this time, it was flagged by my Daughter and myself together with Family and Friends who are Professionals in various fields of Disability that further investigations were required with respect to suspected AUTISM.

Because of his GDD diagnosis he was granted some Funding via NDIS for his GDD with further Funding related to AUTISM being possible once a diagnosis was reached. With my support my Daughter has tried tirelessly to obtain an AUTISM diagnosis for my Grandson. Further support in this endeavour is now also provided by my Daughter’s Husband.

Unfortunately to date this diagnosis has NOT occurred due to many factors, including but not limited to, the lack of Paediatricians and other Allied Health Professionals, (Occupational Therapists, Physiotherapists, Speech Therapists etc), being available for Appointments and associated assessments.

The COVID-19 Pandemic further exacerbated the availability of necessary Professionals.

As a result of having NDIS Funding, my Grandson was able to have some level of support from the AUTISM Association on the basis that he was waiting formal diagnosis. This meant he could attend weekly sessions at AUTISM Association.

When he started at Kindergarten in 2019 in a Department of Education - Public School this also meant he could be provided with support from AUTISM Association during Class Time. This however was limited to 2 x hours once per Fortnight.

The School my Grandson attended at the time had a very knowledgeable and supportive Deputy Principal who endeavoured to assist by also providing an Education Support Officer for a limited time (approximately 2 x hours per day – 3 days per Fortnight). I understand this was because of Funding Application through the Education Department’s processes and related to his GDD Diagnosis.

It was unfortunate circumstances though as the Principal and many of the Teachers in the Early Childhood area had no understanding of my Grandson’s issues and no desire to learn or embark on communication with us. This was also true for other Families and their Children with varying Diagnosis and Learning deficiencies.

Since my Grandson transferred to another School in 2021, he has not been able to receive the same level of Support as he still does not have a ‘formal’ diagnosis and this prevents any application for additional funding for Education Support Services for him.

We have been fortunate in that the School has, to a large extent, listened to my Daughter and together with Teacher observation the School has identified areas where my Grandson requires support (Emotional Regulation etc) and where possible have endeavoured to assist in these areas and kept my Daughter informed of specific issues and/or progress.

This support is very limited though and only at an informal level.

The AUTISM Association were providing support, (1 to 2hours once per Fortnight) however this has not been provided since the end of 2022.

It is only because of our own Research into AUTISM that my Daughter and I have been able to implement strategies and plans to assist my Grandson in his ongoing development.

We are indeed ever hopeful that with success in connecting to relevant Allied Health Services and sound diagnosis, and the ongoing support of these various services the journey to ‘successful outcomes’ for my Grandson will be achieved

My Granddaughter, now 5years and 8months of age, does not have any diagnosis. However due to a number of developmental delays identified during normal Child Development Appointments and the fact that her Brother had been diagnosed with Global Development Delay (GDD), she was granted NDIS Funding.

At the time it was flagged by my Daughter and myself together with Family and Friends who are Professionals in various fields of Disability that further investigations were required with respect to suspected AUTISM as well as ADHD.

With my support my Daughter has tried tirelessly to obtain a diagnosis for my Granddaughter. Further support in this endeavour is now also provided by my Daughter’s Husband.

Unfortunately to date diagnosis has NOT occurred due to many factors, including but not limited to, the lack of Paediatricians and other Allied Health Professionals, (Occupational Therapists, Physiotherapists, Speech Therapists etc), being available for Appointments and associated assessments.

The COVID-19 Pandemic further exacerbated the availability of necessary Professionals.

My Granddaughter started kindergarten on 2021 Unfortunately, as she does not have a ‘formal’ diagnosis this prevents any application for additional funding for Education Support Services for her.

We have been fortunate in that the School has, to a large extent, listened to my Daughter and together with Teacher observation the School has identified areas where my my Granddaughter requires support (Emotional Regulation, Attention Focus etc). and where possible have endeavoured to assist in these areas and kept my Daughter informed of specific issues and/or progress.

This support is very limited though and only at an informal level.

It is only because of our own Research into AUTISM and ADHD that my Daughter and I have been able to implement strategies and plans to assist my Granddaughter in her ongoing development.

CHANGES REQUIRED:

The issues faced by my Family and many others is that Education Support Services can currently only be Funded/Provided where a ‘formal’ diagnosis has been made whether that be for AUTISM, ADD, ADHD, Dyslexia etc,etc.

Informal and evidentiary information that is presented by Parents or identified by Teaching Staff is not taken into consideration with respect to the provision of Education Support Services.

The system needs to change so that Education Support Services can be accessed whenever there are factors identified associated with barriers to a Student’s Learning abilities and NOT based on ‘formal’ diagnosis.

My Family’s experience and that of most other Parent’s is that it takes many, many years for a Diagnosis to occur and by that time the Student has already been adversely impacted by the lack of Support Services.

The premise that Early Intervention is the answer, (ie: giving children with developmental delay or disability, and their families, supports to enable the child to have the best possible start in life). can only be true if the ‘interventions’ are available and used at the time they are required and not have Students wait until they have ‘fallen through the cracks’ and are struggling, despondent and disengaged.

Alongside this of course is the need to ensure that ALL Schools and Teachers are provided with appropriate training, guidance and assistance with respect to being able to identify Students where additional supports may be required and being fully informed of what actions can be implemented to assist Students and their Families on an ongoing basis.

The resourcing of Schools with appropriately trained Education Support Staff and Highly Skilled

Allied Health Professionals, (Psychologists, Occupational Therapists, Speech Therapists,

Physiotherapists etc) that can be shared within a small number of Schools in the same area to assist with these matters is imperative as well.

It has been our Family’s experience that many Paediatricians do not take into consideration the evidence presented by Parents and other Family Members nor information provided by Schools when undertaking their assessment processes. ie: Their assessments are not undertaken in ‘Real-Life’ situations.

Instead, they rely purely on Theoretical Knowledge and the various ‘Tools’ currently used for diagnosing AUTISM and ADHD etc.

This is usually undertaken in a ‘Clinical’ setting with a limited timeframe for assessment (eg: 45mins) and does not consider any other evidentiary information provided.

In our experiences and I am sure many other Families’ experience, the Children being assessed are able to ‘mask’ clinical identifiers because their Parents, Caregivers and others have already implemented strategies to assist their development.

Parents, Caregivers and Teachers who are exposed to the individual Students on Daily basis need to be listened to.in terms of the barriers to a Student’s Learning abilities and this in turn needs to form the basis of any Education Support Services and relevant interventions.

One of my Family’s concerns when developing our submission is that any findings and recommendations made at the conclusion of this inquiry will only be applied to Department of Education Public Schools and NOT encompass delivery of the same model(s) and services within other Education jurisdictions (eg: SCEA, AISWA, Catholic Education etc)

We believe it is incumbent on both the Education and Medical professions to work together to develop a Model that is workable within the Education Support Framework.

I, my Daughter and others with close connections to our Family, (Professionals and otherwise) are open to further discussions and input into this inquiry so that the assistance required for ALL Children can be accessed in a TIMELY manner.

We would like it noted: We don’t believe the Children are ‘Broken and need Fixing’ but they certainly do need to have the “the best possible start in life” and that can only be achieved by having the right supports in place at the right time.

Yours sincerely,