Autism, Ableism, and Austerity
A submission to the Senate Select Committee on Autism July 2020
Dear Committee Members,
We are the parents of Mr 8 and Mr 6, two gorgeous Autistic boys with Attention Deficit Hyperactivity Disorder (ADHD). Both boys are smart, funny, cheeky and loving. Mr 8 is great at maths and song writing; Mr 6 is an amazing artist. Both boys will lead happy, healthy, productive lives – we will make sure of it. The journey to this point, where we understand Autism and appreciate it as a gift, and where our kids are happy, has been horrendous. The early years were marred by two bumbling parents who tried to manage their children as you would a neurotypical child, unintentionally adding to their distress. We have seen our children be judged and labelled naughty. Our eldest has been ‘slapped’ at day-care and secluded and restrained at his previous private school. Unfortunately, Mr 6 and Mr 8’s Autism journeys have occurred following the post 2013 gutting of the commonwealth public service. The journey has been marred by paperwork, waiting, appeals, reviews, FOI requests, more paperwork and letters to Ministers. It should not have been this hard. The National Disability Insurance Agency (NDIA) should never have been subject to the public service staffing cap when the NDIS was rolled out. Our experience has been one of decline in early support and diagnostic services. This has been due to: the increasing bureaucracy of the NDIS post its trial, the scaling back of state/territory public support services following the rollout of the NDIS, and our inability to pay for private services during the early stages of our younger son’s journey (thanks to a wage freeze). Our eldest son, under the care of a private paediatrician and a resourced public child development service, was diagnosed in 2016, within 11 months of his first medical appointment. He received funded support prior to his diagnosis, under a National Disability Insurance Scheme (NDIS) trial. On the other hand, our youngest son, fully under the care of the public system, was diagnosed in May 2020 - 2.5 years after his first medical appointment. In the end, our youngest son only received a diagnosis as we could afford to go into debt $1,990 for a private assessment. He was only offered sporadic public therapy and does not yet have access to the NDIS. It is utterly incomprehensible to us that in Australia the quality and timeliness of support an Autistic child receives can be so dependent on the money that their parents have. On the positive side, the private psychologist (mostly Following sections: NDIS funded) and paediatrician our eldest sees have * Page 2: Statement addressing the terms of reference;
- Page 9: Attachment A: Mr 8’s schooling journey; been lifesavers. And our local public school, although * Page 11: Attachment B: Mr 6’s Autism diagnosis journey. not perfect, has done a good job supporting our eldest son in a smaller classroom setting; our youngest is also developing well in their care.
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Statement Addressing the Terms of Reference (TOR)
- Current approaches and barriers to consistent, timely and best practice Autism diagnosis (TOR “e”) Our experience: We reside in the Australian Capital Territory (ACT) and our youngest son waited far too long for his Autism diagnosis – 2.5 years from his first medical appointment. Instead of being diagnosed at aged 3.5, he was diagnosed at aged 6. This resulted in our son missing out on early support. A detailed timeline of this journey is provided in Attachment B to this submission. There are several contributing factors to this delayed diagnosis. First, 2017-2020 has been a very busy period for us. We have been busy supporting our eldest son (also Autistic) who has high support needs - our time has been spent with school meetings, NDIS applications, NDIS appeals, therapy appointments and work outside the home. Our younger son, who appeared to have lower support needs, did not get as much of our time as we now know he needed. Perhaps we should have asked more questions and pushed for more funded supports earlier. Secondly, we relied on our local Child Development Services (CDS) to co-ordinate support and investigations, when with hindsight we should have demanded paediatric support from the start. In the several years since our eldest son was a client of CDS during his diagnosis, it has become apparent that the organisation, which has some fantastic caring staff, has become increasingly under-resourced. Programs supporting families of newly diagnosed children have been cut and outsourced to a private organisation. We were under the impression our son was on the waitlist to see a paediatrician for 10 months, when in fact a referral had not even been sent. Thirdly, we felt let down by public paediatric services. When our son commenced seeing a paediatrician, there was a reluctance to refer him for an Autism diagnosis. At one appointment, we were told “Nearly every child sent for an Autism assessment is diagnosed. Are you sure you want that for your son? A diagnosis will follow him.” Our son was referred for an assessment after we pushed for this, mentioning that a diagnosis would not change our son or our love for him, rather it would open up support. Then… COVID-19 hit. We were gutted when in late April 2020, during the COVID-19 crisis, we received a letter in the post (dated earlier that month) saying our son had been discharged from the Paediatric services books (without consent) and if he still needed support, this would require a new referral and application once the office re-opened after
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COVID-19 concerns abated. A phone call also revealed that the waitlist for an Autism assessment had also been frozen and once it re-opened there would likely still be a 12 month wait. Our son had already fallen behind in school. He is doing a second year of kindy. He could not afford any further delays. So, we put $1900 on a credit card for a private Autism assessment. Our son received an Autism and Attention Deficit Hyperactivity Disorder (ADHD) diagnosis in late May 2020. He will see a private paediatrician in November 2020; yes, there is a wait however we cannot risk our son falling through the cracks of the public system again. Recommendations:
a) Improved resourcing for public services: i. State/Territory public Child Development Services (CDS) should take on a case management role in supporting family units. ii. During pandemics, public CDS and paediatric services, should continue supports via telehealth. iii. Public paediatric services should move to online communication and record keeping, in an effort to improve timeliness and clarity of services. Far too much time is lost with snail mail.
b) States and Territories should agree on and mandate a maximum timeframe for Autism assessments to be conducted under public systems (e.g. 6 months). State and territories should cover the cost for families to pursue private Autism assessments should they be unable to meet the mandated timeframe.
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- The social and economic cost of failing to provide adequate and appropriate services, including to support key life stage transitions of autistic people (TOR g) Our experience: When Autistic children are supported, in the way they need supporting, they shine. They grow into adults that shine. When they are not supported in the early years the social costs are high – seclusion, restraint, trauma, self-harm, depression. The economic costs of inadequate support are high. Cost blow outs with support for older children and adults; welfare expenditure increases due to the inability of many autistics to participate in the workforce. Where do we start? Apart from a Victorian Government TV ad we saw this year starring an Autistic child in a supermarket, we have not seen Government resourcing directed to improving the life of Autistics through increased acceptance. Far from it - we have just learned budget cuts to the ABC have led to the ground-breaking show “Love on the Spectrum” being cancelled. This is a failure of public service. Unfortunately, there is a lack of acceptance of Autistics at all levels. Awareness? yes (‘light it up blue’). Token accommodations? yes. Real understanding and acceptance? no. Discrimination in favour of non-Autistics is not only rife, it is the norm. Disrespect and abuse of Autistics is common. It starts at home. When children are diagnosed with Autism, parents are often presented with a doom and gloom picture of what their family’s future will be like. Medical professionals, as they did with our eldest son, ask parents if they really want a diagnosis for their child. Private profiteers, in particular those spruiking Applied Behaviour Analysis (ABA) therapy, talk about ‘intervention’ and how if parents want the best for their children they will sign their child up to (at the NDIS’s expense) excessive hours of ‘therapy’. Forget that the tactics are widely believed by Autistic adults to cause trauma. Thankfully, our eldest son had sporadic NDIS support in the early days and did not have the funds for 20+ hours per week of ABA ‘therapy.’ We are horrified that one registered NDIS provider who was planning on making a submission to this committee has talked about ‘beating Autism’, and is connected to the website www.dealwithautism.com . We are active in many online Autism parenting related groups and see the results from this negative introduction to Autism; parents regularly post videos of their children’s meltdowns, parents post that they can’t cope and have no hope, parents describing their children’s behaviour as ‘disgusting.’ Last year we were gutted when an ‘Autism mummy’ blogger posted “I hate Autism… I hate it with every inch of my being.” This negativity delays acceptance and hampers the ability of parents and guardians to help their Autistic children shine. It continues at day-care. When our son was 3, and not yet diagnosed, his hand was slapped by a carer for picking flowers out of the garden. Another educator called the centre director immediately who fired the first carer on the spot. When reporting the events to us, the Director spoke about respect for the child being paramount.
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It continues at school. With our eldest son we have seen what happens when an Autistic child starts their education at a school that does not ‘get it’. By the end of our son’s time at a respected private school he was physically lashing out, trying to run away from school, was only attending school for a few hours each day, and was regularly being suspended. Our son was sucking on his skin in distress (causing bruising) and wailing himself to sleep at night. There were some loving and talented teachers at the school. It is not their fault they were not experienced with Autism or anxiety in children. It was not their fault that they were not properly resourced to support our son. It was not their fault that in one week our son had 6 different teachers. It was not their fault that our son was not diagnosed with ADHD and medicated until towards the end of his time at the school. It was not their fault that the non-negotiable discipline first, ask questions later approach set by the school executive was making it difficult for them to support our son. Further details of our sons schooling journey are contained in attachment A. With hindsight a mainstream classroom was too large and noisy for our son. Teachers did not have the time to tailor tasks to his learning needs. Staff used language and techniques that triggered our son … who they then viewed as naughty. Infuriatingly, towards the end of our sons time at the school we learned the principal had refused to distribute to staff working with our son a one page profile we had provided outlining our sons triggers and techniques to calm him (citing privacy concerns, despite the fact we had provided written permission). The ‘calm’ area was actually a common area between classrooms with regular foot traffic. Our son was regularly sent to the Principal’s office. We were repeatedly asked to keep our son home. We did not realise at the time that the ‘informal’ suspensions delayed the involvement of head office staff and additional support for our son. By the time the head office got involved it was too late. Our son was traumatised. Staff had been through the wringer. Our relationship with the school executive was untenable. Then the school withdrew the limited one on one support our son had – when he most needed it. Our son transferred to a smaller support unit (maximum 8 children, 1 teacher, 1 teaching assistant) within our local public school. There are options to integrate our son into a mainstream class. Our son was lucky to get a spot – the Department prioritised his placement based on escalations at his previous school. The wonderful school psychologist supported us through the enrolment process. Our son is doing much better at his new school – the quieter classroom and medication for ADHD allows him to concentrate better. The teachers are better resourced to tailor learning activities. The Executive are more understanding and flexible in supporting diverse needs. It is not perfect – we still find that few staff are experienced with Autism and identifying and supporting anxiety in our child. The instinct of some is still to look at our son as a naughty boy. That being said our son is attending full days, he is learning, and he is mostly happy.
But… we are tired. We have had enough of being responsible for training school staff to support our son. We just want to be parents.
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Recommendations:
a. Increase respect for Autistics through: i. A public awareness campaign – focused on Acceptance NOT just Awareness; ii. Legislating against parents and carers posting video’s and photos of Autistic children’s meltdowns online - even in ‘small’ carer support groups. This is a breach of the privacy of the child and reinforces negative stereotypes of Autistic children; iii. The State and Federal public services leading by example and becoming the employer of choice for Autistics. This would include not only having token programs to employ Autistics, but rather actually resourcing programs that promote inclusion and support diversity in the workplace (e.g. providing job interview questions in advance, having work spaces that don’t cram staff in like sardines in a can, allowing non-executive Autistics to have their own office, adding neurodiversity acceptance training to the list of annual mandated training). In other words, don’t just ‘talk the talk’… ‘walk the walk’.
b. Improve the schooling experience of Autistic children through: i. Improved teacher training in universities for all neurodiversity’s (ADHD, Autism etc) as well as for identifying and supporting anxiety in children; ii. Ensure all Autistic children, if needed, have access to smaller classroom options (to include support units) within their local public school. iii. Support teachers by ensuring they have easy access to trained professional support. Larger schools should have a psychologist on site (not just a chaplain!). All teachers should have access to teaching assistants (without having to jump through hoops) to help them to include children of all abilities in the classroom. Teachers in all states should have quick and easy access to professionals with specific training in Autism (e.g. via an ‘Autism and Neurodiversity hub’). iv. Mandating neurodiversity requirements be included in the design and construction of all new schools (public and private), and renovations of existing schools. This includes all classrooms having quiet areas (sub-rooms, annexes, private courtyards) within the classroom where students can retreat to when completing work. Each year area should have calming sensory rooms where students can retreat to when they need a break.
v. Require all schools (public and private) to report to their central co- ordination office and a Government regulator, all occasions where children with disabilities/neurodiversities, are ‘asked’ to stay home from school or ‘sent to the office of a school executive.’ This is separate from, and in addition to, reporting on formal school suspensions and restraint incidents. vi. Offering families additional financial and other support from the State/Territory Education budget (e.g. ‘planning’ or ‘release time’ for the parent/carer) if they feel home-schooling is best for their child.
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- TOR (h) the adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for autistic people, including
i. autism understanding within the NDIS ii. the utility of the Early Childhood Early Intervention Pathway for autistic children Our experience: We have seen little evidence that the NDIA or its contracted partners have a satisfactory understanding of Autism. From the first planner for our older son, who told us we didn’t need funds to buy equipment for our son as we could just ‘rent toys from the local toy library.’ To a staff member who grilled our son for ‘playing’ with the automatic doors of a disabled toilet (the toilet doors opened noisily, our son was scared and kept hesitating to go in). To when a planner asked our younger son to do a bunch of mandated random exercises despite our son already having detailed speech and occupational therapy reports. Sadly, this lack of awareness, acceptance and accommodation matches our experience in all aspects of society – extended family, day-care, school. The Early Childhood Early Intervention (ECEI) Pathway is a great concept. The sooner kids get support the better. Our eldest son obtained ECEI support when he was 4, prior to an Autism diagnosis. This support, through an NDIS trial site program, was critical in improving our son’s verbal skills and sensory support prior to school starting. It is a pity the reality no longer lives up to the dream. Out younger son is 6, just received a diagnosis and still does not have access to funded support. New child applicants to the NDIS, such as Mr 6, are missing out on critical early support due to delays in publicly funded assessments. Can’t get assessments, can’t get enough documentation to support an NDIS application. Older child applicants to the NDIS, who finally have sufficient documentation, are missing out on access to the Early Intervention pathway for children, due to a bureaucratic application process and inadequate staffing of ECEI partners.
From Mr 6’s experience, the ECEI application process involves lengthy delays, which are NOT reflected in the ‘NDIS Access Request’ figures due to the way the figures are calculated.
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A parent or caregiver calls an ECEI partner, and lodges a request to discuss access to the NDIA.
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After 3-4 months, the parents/carers may receive a phone call to discuss their child and set a time (weeks/months later) for an access meeting.
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During an access meeting, an ECEI partner runs a PEDICAT test that for many clients are an inferior duplication of results already available in reports from healthcare professionals.
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Following the access meeting, it may be weeks or a month before an access request is sent to the NDIA. Only at this point does the clock start ticking on the 21 days ‘Access Request’ processing time as outlined in the Act.
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At some point after access is granted, a planning meeting may be held, a plan drafted and sent to NDIA for approval.
Please read about Mr 6’s journey in Attachment B. Our son missed out on NDIS support by a matter of weeks. Our son applied for NDIS support when he was 5. His access request was denied as by the time it was assessed he had just turned 6 (the legal point at which access to the NDIS could not be granted without proving permanency of condition, i.e. a diagnosis).
Recommendations:
a. Amend the National Disability Insurance Scheme Act 2013 (the Act): i. The Act be amended to mandate that ECEI applications must be processed within 3 months - from initial ‘application query’ to when an access request is granted. ii. Extend the maximum age for access to the ‘Developmental Delay’ stream of the NDIS from 6 to 7 (Amend Part 4 of the Act -Definitions).
b. Amend NDIS Policy i. Mandate that applicants to the ECEI stream be given the option of submitting an ‘access request’ direct to the NDIA, instead of through an ECEI provider.
c. Improved resourcing of public services: i. Rebuild local child development services (speech, OT, psychology) to provide early child support, instead of relying so heavily on NDIS funding and outsourced private providers.
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Attachment A: Mr 8’s Schooling Journey
The following are either recollections of events during Mr 8’s schooling or extracts from emails from school officials.
Day-care:
Age 3: our son was slapped on the hand by a carer for picking flowers from a garden. The carer was sacked.
Pre-school:
Within 3 weeks of our son starting pre-school, we received an email titled “Time for a chat.”
Kindergarten:
Our son was sent to the Deputy Principals office (we can’t remember what for) and told us he was yelled at for weeing in the office. Our son told us he weed as he was scared.
“During recess yesterday, X
Year 1:
“X had a red day today. Very briefly X consistently was seeking control of the task and day. He became ‘red’ very quickly when the response was not what he wanted. He even screamed at me, after he asked if the excursion
was tomorrow and | replied next Friday! The behaviours today included
yelling, squealing and hitting. X yelled “shut up”, “you’re stupid”, “this is
dumb". He tried to negotiate tasks to his liking by saying "I'll first see if |
like it“ and “I’ll only do it for 5 mins”. X spent some time with Y
today.”
Principal: “| am writing to arrange a meeting with both yourself and
violent behaviour being engaged in by X
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WORDS HAVE
POWER
“So, are we really working with children or on children? Rather than asking why the child is distressed and working on root causes with the child, schools are often working on fixing the behavior that’s merely a signal of distress, and seldom the source of the distress itself. This mentality seeks to comfort adults, not children. It also takes away the child’s last refuge of communication; it effectively silences a child.”
Principal: “In your latest email you mention the number of staff who interact with X. While it
would be ideal to have just the classroom teachers deal with X when he engages in inappropriate behaviours, it is anyone that is available that tries to
monitor and control the situation.
“Just wanted to let you know there was an incident today at the end of lunch whereby X (our son) hit Z (teaching assistant). All students were asked to pack up the games they were playing. Unfortunately, Z was not expecting X to attack her when she turned around. Y (Deputy Principal) withdrew X from class as this type of behaviour is not acceptable. X apologized to Z. We would appreciate it if you could speak with X and stress the importance that hands on is not okay.”
Year 2:
“After offering positive choices and redirection, X moved himself into the
inappropriate language. He then spent the 7 minutes in time out with
We had to start the timeout timer 4 times, as he continued swearing and screaming. The class was removed to the breakout space to ensure their safety. Whilst X
did not like being in timeout, he remained there.”
“X was being shadowed on the playground when he began swearing and becoming more agitated. Our
this time. He was told that he had time out. To try and calm him down | stood behind
him to apply pressure while calmly telling him that swearing was not OK and he was in
time out.”
Year 3 (new school):
Mr 8 is peeved as he can’t return to school (after COVID-19) on the Monday due to it being a public holiday. Mr 8 wants to see his teachers, classmates and new work area!
“X had a tricky day and was a bit out of sorts. He kept yelling about work and not wanting
todo much. He wasn’t well behaved for
“
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Attachment B: Mr 6’s (A’s) Autism Diagnosis Journey
Austerity, COVID-19 and the Early Support black hole
Early
2014
Born
3 Years old — Concerns first arise
November
2017
Hearing test completed due to parental concerns about “A” not responding to his name being called, and other requests. Passed hearing test.
4 years old — the ball is rolling… slowly
April 2018
Attended a community speech drop-in clinic due to concerns about delayed speech, and “A” still not responding to his name being called/other requests. Concerns about “A’s” anxiety, social interactions, frustration, and the possibility of ASD were discussed at the drop-in clinic. “A” was referred to local Child Development Services (CDS).
May 2018
“A” commences periodic speech therapy with CDS. The sessions were useful however were too infrequent and at times there were large gaps in support.
August
2018
Speech pathology report detailed “A’s” moderate receptive and expressive language delay, a delay in speech sound development and other difficulties that “could be red flags for Autism Spectrum Disorder.” We were under the impression that “A” was on the public waitlist to see a paediatrician from this time.
5 years old — two steps forward… four steps back
June-July
2019
e Infrequent speech therapy ceases.
e “A” is formally placed on the public waitlist to see a paediatrician, and his position in the waitlist is fast-tracked. This followed queries made in May 2019, where it was discovered that “A” had not been on the waitlist since August 2018 as thought. A referral was never sent from CDS to the Community Paediatric and Child Health Service.
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e Late July 2019: “A” sees a public paediatrician who advised we seek psychology support for “A’s” anxiety and adopt a wait and see approach regarding suspected ASD.
October We paid $1357 out of pocket (via credit card) for a private Occupational
2019 Therapy (OT) assessment for “A”. The report detailed that “A” was at least 3
years behind his peers in fine and gross motor development.
November | “A” has a second appointment with the public paediatrician. After parental
2019 advocacy and reading the OT assessment, the paediatrician agrees to refer
“A” for an ASD assessment.
December e “A” is formally referred for an Autism Assessment.
2019 e After being on a waitlist, “A” commences seeing a private psychologist, funded via Medicare (a mental health care plan) with parents paying a fee to cover the Medicare gap.
2nd We made queries to the NDIS ECEI partner regarding NDIS access for “A”.
January We were advised it could be 3-4 months before someone was available to
2020 (NDIS | speak to us about “A’s” access to NDIS. Speech and OT reports, along with
“applicatio | the paediatrician referral for an Autism Assessment, were emailed to the
n” ECEI partner on this day.
14th The ECEI partner contacted us to set up a time to meet to discuss “A’s”
February potential access to the NDIS. This contact occurred a short time after “A’s”
2020 (43 parent referenced the possible 4-month delay on a social media page that
days after was visible by a Minister. We are concerned what the delay would have
application) | been in the absence of this.
The ECEI partner suggested meeting within the next few days, we could not due to family circumstances. It was not flagged to us that failing to meet before “A’s” 6th birthday could cause his application to be denied.
6 years old: The year of the credit card
26th Meeting held with ECEI partner.
February
2020 (55
days after
application)
28th Requested documentation re-sent in 2 x separate emails (initial email
February bounced due to file size).
2020 (57
days after
application):
16th “A” denied access to the NDIS.
March
2020 (74
days after
application)
17th A review of the decision was lodged with the NDIS 1800 number.
March
2020 (75
days after
application)
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19th “A’s” school psychologist releases a report detailing cognitive/IQ and March behavioural assessments for “A”. The report found strong indicators 2020 (77 (requiring further assessment) for Attention Deficit Hyperactivity Disorder days after (ADHD) and ASD. application) 25th Supplementary information, detailing parental concerns and grounds for a March review, was sent to the NDIS Internal Access Review Team. 2020 (83 days after application) 26th 3 hours after the reviewer confirmed via phone that they had not yet read March the supplementary information provided the day before, a detailed report 2020 (84 was received upholding the original decision that “A” was not eligible for days after the NDIS. Access was denied mainly as it could not be proven that “A’s” application) impairments were permanent (a legislated requirement now he had turned 6). 6th April A Ministerial Determination (health) came into effect that had the 2020 unintended consequence of “A” no longer being able to use his mental health care plan for Telehealth psychology support (as the provider could not afford to bulk bill due to the Medicare rebate being too low ). 10th April CDS confirmed that ASD Assessments had been put on hold due to COVID 2020 19, and that when they recommenced (a timeframe was not provided) there would still be a 12 month wait-list. 15th April We sent a formal complaint to the Office of the Minister for the NDIS, the 2020 Shadow Minister for the NDIS and our state/territory Minister for Disability. 20th April Good news – “A” can now use his mental healthcare plan for Psychology 2020 Tele-health! (bulk billing is no longer compulsory for children under 16, which previously forced the provider to see “A” as a full fee-paying private client). 21st April A lovely lady from NDIA called us regarding the correspondence to the 2020 Minister, however, there was not a lot she could do to assist. Hats off to all the NDIA employees who want to do the right thing but are hamstrung by policy and budget constraints.
23rd April AM
2020 We received a letter from local Health Department (dated 1st April) saying that “A’s” June paediatric appointment had been cancelled, and his entire referral to the clinic has been closed (without consultation or consent). Telehealth was not on offer as the clinic had been closed and staff redeployed elsewhere.
We were advised once COVID-19 cleared, children needing assistance could re-apply to go back onto the public waitlist to see a paediatrician.
We were also advised that once unfrozen (no timeframe was provided for this) the waitlist for an Autism assessment was still at least 12 months.
PM
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We submitted a request to a private psychology clinic to conduct a full assessment of “A’s” cognitive and learning needs. We were quoted $1,990 (a discounted fee as we already have some of the required assessments and documentation). We asked the clinic to book “A” in for the assessment, fortunately they were able to fit “A” in within the month.
May 22™, | The private psychologist advises that “A” has been diagnosed with
2020 . : : =
Autism Spectrum Disorder and Attention Deficit
Hyperactivity Disorder.
11th June’ | “A’s” diagnosis report was received.
2020
November | “A” has an appointment with a private paediatrician.
2020
An updated application to NDIS for “A” will be submitted once this submission to the Senate Select Committee is completed. We feel that the medium-long term interests of our
children, and all Australian Autistic children, are best served if this submission is made.
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