Submission 116 — Name Withheld — Select Committee on Autism

Department of the Senate

PO Box 6100

Parliament House

Canberra ACT 2600

Dear members of the Senate Select Committee on Autism,

Re; enquiry into the services, support and life outcomes for autistic people in Australia and the associated need for a National Autism Strategy.

Please let me thank the Committee for the opportunity to provide this submission. I’m just a Mum. A Mum that is lucky enough to have the challenge, but mostly the gift, of parenting a child with Autism. was diagnosed with Autism Spectrum Disorder Level 3 using the DSM-5 diagnostic tool, as well as Global Development Delay and Speech Delay just before his third birthday. is now one month from his fourth birthday. I may not be a long standing parent of a child with Autism yet, and I won’t be able to constructively address all points in this submission, but the last year has been a very steep learning curve for myself and my husband and I hope to be able to contribute something of substance in the points I can address, based on our experience to date.

This is the first time I have made a submission of this nature, so I hope I have provided it in the correct format and can provide constructive information in order to better support the life outcomes for autistic people such as my son.

Please note, I took the time to read all the other submissions prior to submitting my own. I can say without a doubt, that I share exactly the same sentiments as the Clinikids submission (number 15). We have seen many Therapists and companies who offer services for autistic children, and I am incredibly pleased to be a client of Clinikids. They are, in my opinion, the pioneers of their field and are leaps and bounds ahead of other therapy providers for autistic children in terms of services provided and outcomes for children and their families, as well as the amazing research they conduct. It is a privilege to be a client of theirs. If there is one submission to carry the most weight in this enquiry, it would have to be the Clinikids submission.

My responses to the Terms of Reference

a. current approaches and barriers to consistent, timely and best practice autism diagnosis;

Please note, I can’t comment on best practice diagnosis as I’m not an allied health specialist but I have added comment on the barriers to consistent and timely diagnosis.

My thoughts: As you would be aware there are two means of undertaking an autism diagnosis – public and private. The public waitlist is often up to a two year wait, which for any child is an extremely long time, but for a child under 7 years old in the prime early intervention years two years can mean the difference between accessing early intervention therapy and not.

Private diagnosis is another option, although costly. The total cost of a pre appointment with a Developmental Paediatrician to confirm an autism assessment is needed, plus the assessment itself costs a little over two thousand dollars. Part of the cost is covered by Medicare rebates. There is also a wait list for a private assessment of up to 6 months with some providers.

Prior to knowing an autism assessment is needed is where a lot of early intervention time is lost. We raised concerns for over a year with a Paediatrician, different GP’s, Child Health Nurse, and both a Speech Therapist and Child Psychologist we had been seeing before we even knew what an autism assessment was. We were adamant there was more to speech delay and behaviour, but were frequently told by different GP’s and health specialists that boys are developmentally slower than girls, or everyone will talk at their own pace, and my favourite: even Albert Einstein didn’t talk until he was 5.

It’s also our experience that first time parents’ concerns are disregarded until a developmental delay is blindingly obvious.

My suggested solutions:

In a utopian society, more allied health specialists would be employed by the Government and be available to drastically reduce the wait time for a public autism assessment. If there’s a shortage of allied health specialists, measures such as recruitment drives in high schools, or offering a new visa for overseas specialists to work in Australia be implemented, but I realise that’s a very simple suggestion to a more complex situation.

Alternatively, Medicare rebates could be increased to cover more of the out of pocket expense of a private autism assessment.

Lastly, for GP’s to be more aware of standards such as the ASQ and to refer children and their parents to Developmental Paediatricians sooner rather than later if an area of concern is flagged on the ASQ, rather than opting to wait and see if the child ‘catches up’. https://agesandstages.com/about-asq/how-asq-works/

b. the prevalence of autism in Australia; No comment.

c. misdiagnosis and under representation of females in autism data, and gender bias in autism assessment and support services; No comment.

d. international best practice with regards to diagnosis, support services and education, effectiveness, cost and required intensity; My comment: It’s interesting and surprising that this point is mentioned. We lived overseas while was one and half, until he was two and a half. As well as in Australia, we had seen GP’s, Paediatricians and a Speech Therapist about our concerns while overseas. We ensured we only saw therapists and specialists who had graduated from Australian, British, Irish or American universities hoping that their knowledge and guidance would be similar to that in Australia.

The cost of medical treatment overseas varies greatly in our experience. Locally trained staff are usually more affordable, with foreign trained staff with degrees from western

universities being much more expensive. Private health insurance covers some appointments, but with no Medicare rebates for overseas medical appointments medical assistance can be much more expensive than the cost in Australia.

My suggested solutions: Despite being very familiar with the medical system in the country in which we were living, we found it quite difficult to get in front of the right people to discuss the developmental concerns we had for .

Without going to the expense of sending therapists to every country in which Australians are living, something as simple as a page on the Australian Embassy website listing the overseas postings of Australian Doctors, specialists and allied health therapists who are familiar with autistic clients/patients would be quite helpful.

I wasn’t going to suggest the Australian Government provide any accommodations for Australians living overseas but since the point has been made in the enquiry I’ve added my thoughts on the matter. I feel the above suggestion would be of great benefit not only for Australian children and their families living overseas, but I dare say from a long term cost perspective too. With current research pointing to early intervention being the key for best long term outcomes for people with autism, perhaps early diagnosis and early intervention is also more economical opposed to late diagnosis and long term intervention.

e. the demand for and adequacy of Commonwealth, state and local government services to meet the needs of autistic people at all life stages; My thoughts: Point e is a very broad and very large statement. It’s quite clear there is demand for Commonwealth, state and local government services to better meet the needs of autistic people at all stages of life, especially regarding education for autistic children, which is what I will focus on here.

is due to start kindergarten in 2021, pre primary in 2022 and year 1 in 2023. Thankfully is born in the last half of the year, so we have an extra year of him being home where we can continue to access early intervention therapies, and an extra year of giving him the tools and strategies he needs in order to obtain an education.

We are very fortunate to have received an NDIS plan that covers a large portion of the therapy required for to meet this year’s goals. However, there is no guidance provided from the Commonwealth, state or local government public education system with regards to the most appropriate school avenue to undertake. To date I haven’t found any support in this decision at all. It seems wasteful to fund early intervention therapies, only for his education and schooling to fall between the cracks.

There seems to be a lot of confusion regarding exactly what a classroom for autistic children is called. In Western Australia there are 5 different names all appearing to mean the same thing, which adds further confusion to parents already making a difficult decision. There are SLP’s – Specialist Learning Programs, Autism Programs (self explanatory), Ed Support –

Education Support Centres, EIP’s – Early Intervention Programs, EIP’s – Early Intervention

Programs, EIIP’s – Early Intensive Intervention Program. While these options are suitable for autistic children, some only accept children with a Level 1 or 2 diagnosis, some only accept a Level 3 diagnosis and some only accept children with a co morbid diagnosis and intellectual disability. It is an overwhelming and confusing system to navigate, making it near impossible for parents to make the best decision on behalf of their children. Therapists are often asking us for recommendations or help to understand this system.

The following links listing the education options for autistic children are quite out dated, however I found the most helpful information regarding schools with Education support centres on a bus timetable website! Helpful bus timetable link

https://www.education.wa.edu.au/education-support-centres-and-schools

https://www.det.wa.edu.au/schoolsonline/schoollistadvanced.do

A national register on the diagnosis of autism would undoubtedly contribute towards government being able to provide services for children with autism in the public education system.

Places in the programs for autistic children are incredibly difficult to obtain. Many families miss out on securing a spot each year. To date, a very brief overview of the education options in the public education system are;

1. Obtain a spot in one of the 2 year programs for autistic children (SLP, EIP, etc) that runs for kindy and pre primary. For example, Mount Hawthorn and Creaney Pre Primary schools. Families aren’t required to live in the catchment area of the school in order to attend these programs for two years. From there, if the child is ready for mainstream Year 1 they change schools to attend the school in their catchment area and the school apply for an Educator Assistant (EA). As you can imagine, this change in school is difficult for many children of this age, but especially difficult for autistic children.

Further to this, An EA assists with the room due to the demands on the Teacher of having a child with a disability in the room, NOT attending to the child directly. However, it is up to the school how to use the resource of the EA. Some schools allocate the EA to spend as much time with the autistic child as possible, even helping with social and interpersonal skills. Other schools use the EA to support the room as a whole and the autistic child doesn’t receive any direct assistance from the EA with their education, personal care needs, sensory needs and social or communication needs. Therefore, it’s fair to say that obtaining an EA isn’t a definite answer to an autistic child’s needs and it’s quite obvious how this child can easily ‘slip between the cracks’.

If the child is not ready for mainstream school after the two year program, it’s unclear what happens to these children. Most are forced into mainstream schools in their catchment area with the hope that they receive an EA and that the school supports the needs of the child.

2. Obtain a spot in one of the schools who have a program for autistic children that runs from kindy through to Year 6. This program is an Ed Support Centre that accepts a range of disabilities. For example, Kalamunda Primary School. Families aren’t required to live in the catchment area of the school if attending the specialist program, but are required to live in the catchment area if at any point the school deems the child to be ready for mainstream school and no longer attends the specialist program. In Perth, there are only three schools where this is a service that is provided. I would like to understand how the Department of Education determine how many positions are available in these programs without knowing how many children in Australia are diagnosed with autism.

3. Obtain a spot at a primary school with a specialist autism programs that runs from the duration of kindy through all of the primary school years, and feeds into a high school that runs an autism program. In Perth, there are only two such locations for this that I am aware of.

My concerns here are; Why do the most common autism education programs run for only two years through kindy and pre primary years? What study has been done in order to determine most children are ready for mainstream school after two years in one of the programs, and is mainstream school the right fit for the child, or is the child being made to fit into mainstream school? What happens to children who don’t receive a position in one of the specialist programs in kindy and pre primary? Why can’t EA’s be used as a resource for the child, instead of for the room? How does the Government determine how many positions are available at all levels of schooling without knowing how many children are diagnosed in the country? Why are there less schools, and less positions in autistic programs as the education years progress? Are there less autistic children attending high school, or are their needs less as the children age and progress through the schooling years?

Most autism programs for kindy and pre primary aged children require the children to be verbal and fully toilet trained in order to be considered for placement. Autistic children are sometimes later to master these skills than neurotypical children which excludes them from participation in the programs, further hindering their already limited education options. Alternative schooling such as Montessori schools and Language and Development Centres don’t accept autistic children, despite their curriculum sounding as if it would be quite suitable, dare I say even more suitable for autistic children than mainstream schooling.

My suggested solutions

1. Pick one name for the program for children in the public education system, and all schools update their websites and documents to reflect the one uniformed name making it much easier for parents to navigate and understand.

2. Provide an updated website or central source of information outlining the education options for children with autism – both public and private education options.

3. Ideally, have a manned resource available to explain and discuss different education options for children with autism.

4. Someone with a broader understanding of the education system than I do to have a better look at the education options for autistic children and provide their own expert opinion on the current education options, detailing whether the current options meet the needs of autistic children and their families as well as identify any shortfalls of the current system.

f. the interaction between services provided by the Commonwealth, state and local governments, including:

i. health and mental health, ii. education, iii. employment, iv. justice, and

v. housing; No comment due to limited experience in this area.

g. the social and economic cost of failing to provide adequate and appropriate services, including to support key life stage transitions of autistic people; A key life stage transition that I feel is currently unsupported is the education system, as discussed per above. Due to age, I’m unable to comment on the other points for part g.

h. the adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for autistic people, including:

i. autism understanding within the NDIS, Understanding is questionable, and very ‘hit and miss’ with regards to who you speak to at the NDIS. ii. the utility of the Early Childhood Early Intervention Pathway for autistic children, Our personal experience with , our local ECEI office, is a positive experience. We received a meeting in a timely manner, were accommodated when we requested to have our son’s OT attend with us for support, and felt both heard and understood by the employee. We were provided different booklets explaining the process in detail which provided us information in order to prepare for the plan meeting. We feel our LAC was critical to the success of our plan’s goals and budget. We feel supported by her even after the plan commenced and sincerely hope we are lucky enough to have her as the LAC for next year’s plan.

The only negative aspect of the NDIS planning phase is an obvious lack of support for parents and carers of autistic children. During the planning process we were asked who is in our child’s life. We mentioned godparents, a grandparent, an aunt and two cousins, myself and my husband. Because we have this “support network” we were denied any respite for ourselves. Having any child is a 24/7 job, I think most parents will agree to that. Having an autistic child, or children if there is more than one diagnosed child in the family, is more than a 24/7 job. Autistic children require such a high level of care, that parent/carer burnout is inevitable in most cases. Once the

parent/carer is burnt out that greatly impedes the quality of care and attention the autistic child is able to receive.

Despite having a very small support network, the actual support forthcoming is incredibly minimal. Our son has been in the care of someone other than myself and my husband for a total of 3 hours in the past two years, and that was because I was rushed to hospital, had a CT scan and went into anaphylactic shock and my husband was required to be at the hospital and children weren’t allowed in. If it was any less of an emergency, he’d never have been in anyone’s care other than our own. We don’t do the ‘drop and shop’ therapy sessions. We sit in on every single minute of therapy because we learn from the sessions as much as does. We then apply the strategies we’ve learnt in therapy at home, often sourcing and paying for our own resources (PECS, books, games, OT equipment) at home.

Routine is incredibly important to most autistic children. Even a minor change in routine can cause major disruptions that take days to recover from. Other than a life or death emergency, there is nothing my husband and I could do outside of caring for our son that is worth the days spent recovering from a change of routine. If we were given any respite it would be to maintain the home, attend our own neglected medical and health needs, and to spend more time preparing learning opportunities for Respite to do those things indirectly greatly benefits autistic children.

Further, due to the high level of care required it’s simply not safe nor practical to leave in the care of other people who aren’t professionally trained and equipped to manage his needs, even if they’re related to us.

iii. the ability of the NDIS to support autistic people wit/h complex needs, including those transitioning from prison settings, and No comment. iv. the adequacy and appropriateness of supports to empower autistic people to participate in the NDIS planning process, and exercise self-determination through choice and control over their support services; No comment. We’re not at the age where can participate in the planning process. However, as a parent we were involved in the planning of goals and have quite a lot of autonomy over which Therapists we use providing we are working towards goals. We are very fortunate to have been allocated a knowledgeable and helpful LAC who assisted us with our NDIS plan.

i. the development of a National Autism Strategy and its interaction with the next phase of the National Disability Strategy; The development of a National Autism Strategy is a brilliant idea, and is probably quite overdue. I note that Clinikids (submission 15) wholeheartedly support this initiative. I would be incredibly pleased if the Senate accept Clinikids offer to provide input into this process. I cannot speak highly enough of Clinikids. It is blindingly obvious that the children and their families are their top priority, not the bottom financial line as is often the case with other therapy providers.

j. the adequacy of funding for research into autism; No comment, as I’m not yet familiar with the current funding provided.

k. the social inclusion and participation of autistic people within the economy and community; I’m unable to provide a detailed comment on point k at this point in time however it’s my observation so far that there is minimal social inclusion for autistic people in the community. School and sports are either mainstream for neurotypical children, or segregated autistic groups – one or the other. There are very few inclusive options for school and sports, or other community engagement opportunities.

l. the capacity and sustainability of advocacy, self-advocacy and self-determination supports for autistic people, including mechanisms to self-represent to government as enshrined in the United Nations Convention on the Rights of Persons with Disabilities; No comment.

m. any bill that relates to matters within the scope of this inquiry that is referred to this committee; and No comment.

n. any other related matters.

1. Conflict of Interest issuing Government monies I would like to bring to the attention of the Committee a conflict regarding funding previously provided to autistic children, with the hope that this isn’t repeated in the future.

The HCWA fund – Helping Children With Autism Fund. HCWA info here This was a fund made available to families prior to NDIS rollout. I am unsure of how it was distributed to families in other states, but in WA it was only issued to families through a private company who is also a provider of a range of services to autistic children, and there is the conflict.

Upon accessing the HCWA funds, which were only available in person at the company’s office, the company provided a list of service providers who were authorised to provide therapy to children using the HCWA fund in a plain looking word document. They also took that opportunity to heavily promote their own programs with thick folders full of glossy brochures and face to face promotion – an opportunity none of the other therapy providers had the advantage of also receiving.

After speaking with other parents, it appears that 9 out of 10 families went on to use the company’s therapy services, many of which felt to do so out of obligation. This is a conflict of interest and provides said company an unfair advantage in which to tout their services.

In future, it would be in the best interests of autistic children if funds are issued by an impartial, neutral party whose interest and role is to provide funding to families, not promote their own programs.

2. NDIS funds being used to pay for therapy provided by unqualified therapy assistants/companies charging the full NDIS amount for services rendered by unqualified therapy assistants.

There is a company who delivers therapy sessions run by Therapy Assistants (TA’s). TA’s have completed nothing more than a 4 week in house training course before delivering a weekly program to autistic children. Children spend just 20-30 minutes with a tertiary qualified allied health specialist in the three hours the program runs, but it is charged at an almost similar rate to that of seeing a qualified allied health specialist one on one by the hour.

I feel it important to address this issue, as a large part of families’ NDIS funds are being used to fund a program run by TA’s. It stands to reason that a TA who has completed 4 weeks in house training cannot be compared to the service any tertiary qualified allied health specialists can provide in terms of quality of outcomes for the individual.

3. The same company that has been referred to in the above two points also push clients and potential clients towards doing an NDIS review in order to access more funds to be spent at their company. Upon cancelling the service with this company due to concerns over the quality of therapy provided, and lack of transparency in their company as a whole, staff pushed us and many other families towards lodging an NDIS review of our current plan in order to request the amount needed in order to continue using their services. This is another conflict, and a drain on NDIS services that already seem stretched to capacity. A direct quote from a conversation with this company is “we know the words to say in order to get you more funds in a review”. If there are certain phrases, or words that need to be said in an NDIS plan in order to obtain the funds and services autistic people need, the public needs to

know about them, not be for the exclusive benefit of companies such as this to keep their business afloat. We decided not to review our NDIS plan and get more funds. As a result they have a fairly aggressive follow up and marketing scheme and we received multiple calls to try to change our minds on the NDIS review each escalating up the ladder of management on the company’s side.

Suggested solution: Businesses, and therapy providers, should be able to support parents through the NDIS planning process, but should refrain from pushing families to request reviews in order to obtain more of the families budgets. Suggested solution 2: All people should have fair and equal access to obtain the NDIS plan and budget that meets the needs of their child. There should be no words or phrases that businesses have that increase the final dollar amount of an NDIS plan.

4. What would be beneficial to families is some impartial support on finding a good therapist – what to look for from the company, what to look for from the therapist, what to look out for, how to cease services, what you’re required to sign and agree to as a new patient etc.

We are very fortunate to have very quickly determined who the best therapists are in Perth and are incredibly pleased to say we’re working towards the goals in our NDIS plan with the absolutely wonderful therapists we’ve found, who work so well with our son. Not all parents are as confident and competent at advocating for their children as we are. A neutral resource would be a wonderful advantage to families, especially in the early days shortly after a diagnosis.

5. Minimal support for parents and carers of autistic children. My only negative experience during the NDIS planning phase was a lack of support for parents and carers of children with autism. I have addressed this point in greater detail in section h. ii of this submission, but felt it also required a point of it’s own here due to the importance of this point.

Here ends my submission to the Senate Select Committee on Autism. It may not be as professionally finished as other submissions, but I hope it offers some constructive contributions to the enquiry and plays a small role towards improving the services, support and life outcomes for autistic people in Australia. I have worked on this submission for months, adding a bit here and there as my sleepless nights and busy days caring for a child with a disability allow. This is a submission that could forever be a work in progress. I’ve spent a lot of time on it, but have never been 100% happy with it. Every day we learn more about our son, more about autism, more about what therapies and services are available, and also identify and deficits in the therapies and services available. I could work on this daily for years, and still not be happy with it! I do hope there are a few points of valuable contribution for the Senate Select Committee though.

I would like to sincerely thank you for the opportunity to contribute to this initiative. This enquiry will go a long way towards best practice procedures and the best possible outcomes for autistic children and their families.

Should you require clarification or any further information I would be only too happy to provide that.

Kind regards,

22 July 2020