Select Committee on Autism - Submission
1|Page
Contents
ACKNOWIEAEEMENNS……..:ccccccccceesessssseeeeeceessssesaeeeeeeeesseeesaaeeeeeeessseeseaeeeeeeesseeeesaeeeeeeeeseeessaaaseeesesesesenaaas 3 Personal Background ………ccscccccccccsssssssssceeceessssssneeeeeeeeeseessaeeeeeeeesseeeesaeeeeeeeessseeaaeeeeeeeessessaaaeeeeeseseeses 3 No) = 3 Disability architecture and the need for a National Autism Strategy …………cccccsssccccccesssssssseeeeeeesseee 4 Pre-CiaAgnOSiS……..ccccccccccssssssssececceeessesssneeeeeeeeeseeeesaeeeeeeeeeseeeaaeeeeeeeesseeeaaeeeeeesesseeaaaseeeeeeessesaaaaeeeeeseseeeea 6 ASSESSMENT ANC DiaQnOSiS………….cscccccccccesssssssseecccccessssessaeeeeeecssseessaeeeeeeessesessaseeeeeeessceaaaeeeeeessseseaaees 8
Adult AUtiSM CiaQNOSIS ……….cccccccsessssssscecceecssessseeeeeccessesessaeeeeceesseeessaeeeeeecsseseaseeeeeeseseeeeaaaeeeeeeesseees 9 POSt-CIAQNOSIS …….cccccccessssssscececceeesessssaeeeeeeessseeesaaeeeeeeesseeeasaeeeeeeesseeeaaaeeeeeessseeesaaeeeeeeeesseseaaseeeeeeesseea 10 NDIS……eeeeesceesceesceescecseecececeaeceaeeeseeeseecsaecaeceaeceaeeeaeesaeecseessaeseaeceaeeeaeesseesseesaeseaeceaeeeaeecseeceeseaeseaeeeaeeaas 10 NDIS — Waiting tiM@S ……. cc cccssscesssssseessseeesseeseeeseeesaaeseaeseeeaaaaseseaaaeaeaeseaeaaaeauaeaeaeaaeeeeaeaaaaaaaaaaaaasaaaes 11 NDIS — impacts ON informal Carers………ccccccccsssssssceccceeessesssaeeeeeeesssesssaeeeeeeessseessaeeeeeseesseesssaseeeeeeesseees 13 NDIS — eligibility Criteria… ccccccssssccccceessssssseeeeeeeeesssssssaeeeeeeesssessaaeeeeeeessseeaaeeeeeeeessssssaaseeeeesesseeea 14 NDIS — intensity of early intervention therapy …………cccccssssscccccesssessneeeeceesssessneeeeeeeessesssseeeeeeeessee 15 NDIS Thin Markets ……..ceccessscesesceeeseesseeseseeeesaeeesaeeeesaeeseaeeessaeeesaeesesaeeseaeeseaeesesaeessaeeeeeaeeesaeessnaeeeaees 15 SCHOOL… ceeeeceeeeseeessceeesaceceaceeesaeeeeaeecesaeeseaeeceaaeeesaeesesaeeeeaeeseaaeeeeaeesesaeeseaeeeeaeesesaeessaeeeeaeeeeaeeseeaeeseaeeees 16 VET and Higher Education…………ccccccccccccssssssssccecceccsssssseeeeeceesssessaseeeeeesssessnsaeeeeeeesseesauaeeeeeesseseenaaaes 19 EMpPlOYME nt …….cccccccccccessssssseeceeceeesesssaeeeeeeeseseeeeaaeeeeeeeeseeeeeaeeeeeeeseeeaaeeeeeeeesseeeeaaaeeeeeeesseeesaaaeneeeeessesea 20 Health and Mental Health… eee eeeessscecsseceesseeseseeeesaeeseseeessaeeesaeesesaeeseaeessaeeeesaeeseaeeeseaeeesaeeseseeeeaees 21
Evidence for the health and mental health outcomes for autistic PeOple …………cceesssssteeeeees 21 H@alt eee eeeseeeeseeeeseecsseeeesacessaeeensaeeesaeecssaeessaeecsseesesaeeseseeessaecesaeesesaeeseaeeseseeeeeaeessaeeeeaeeesaeesenaeeeaees 21
Mental Health ……… ce eceesesceeeseeesseeeesaceeeseeeesaeessaeeeesaeeseaeecssaeeesaeesesaeeseaeessaeesesaeessaeesesaeeesaeesesaeeeaees 21 JUSTICO Le eeeceeeesneeeeeseeeeeesaneeeeesaneeecesaaeeecesaeeeecesaeeeecesaeeeesesaeeeesesaeeeeeesaceseseaeeeeresaeeserssanesesesaeeeeeenaees 23 AUtiSM FOSCAPCH «ue eeeeeeeeeenceeeseeeeeaeeceaeeceeaeeseaeecesaeeesaeecesaeeseaeeceseesesaeeseaeeeesaeeseaeeseaeeseaeeseaeeseeaeeseaeees 23 Disability AAVOCACY………..cccessssccccccessessseeeeeeeesseessaeeeeeeeesseesaseeeeeessseseeaeeeeeeeesseceesaaaeeeeeesseesaaeaeeeeeeess 24 AUtiStiC BIFIS 0… ccc ccccceessssssceeeceeeeseeeseeeeeeeeesseeeaeeeeeeeeesseeaaeeeeeeeeeeeeeaaeeeeeeeeseesesaaeeeeeeeeseeeaasaeeeseeseseseaaa 25 Autism and transgender COMMUN IY …………cccsscccccceeesssesssseeeeceeessesssaeeeeecesssessssaseeeeeeesesesaseeeeeesseeseaes 25 Accessibility in the built CENVIFONMENE …………cccccccccceessssssseeeecccessssesaeeeeeceeseesessaseeeeeessesesaaeeeeeeesseseaas 26 APPCNIX …….cccccccccccesssssssceeeeceesssesssaeeeeeeesseeeesaeeeeeeessseeeaeeeeeeeessseeaaeeeeeeessseseasaeeeeeessecesaaaaeeseeesseneeaaaes 28
2|Page
Acknowledgements
| would like to thank Senator Hollie Hughes and Senator Sterling Griff and their staff for their tireless
work and leadership in establishing this inquiry.
| would also like to thank Senators Jacqui Lambie, Jordan Steele-John and Carol Brown in supporting
motions for this inquiry and for a National Autism Strategy and to all other members of the Select Committee.
This inquiry has the opportunity to set the platform to significantly improve the outcomes for
autistic people and | hope that my submission can play a small part in driving these outcomes.
Personal Background
Over the past 10 years, | have worked for the Commonwealth and Victorian governments, as well as
the not for profit disability sector and the university sector. This included roles in developing disability related policy (in both Commonwealth and Victorian Governments), and advocating to improve outcomes for autistic people.
| am also the parent of an autistic child. My son ia is seven years old and is autistic.
My policy background combined with my experiences supporting my son provides me with a unique experience and insight into autism policy. This submission is a combination of my personal and professional experience.
The views in this submission are my own and do not represent the views of the organisations | work
or have worked for.
Note — this submission may be distressing for some people
| would like to note that there will be data and information in this submission that will be particularly
confronting for autistic people and their families. Please be aware of this when reading my
submission, but | believe it is critical to share this information.
As a parent of an autistic child, who is seven years old — looking at this data is harrowing for me — it establishes that the outcomes for my child, on a statistical basis, are going to be far worse than
other children, his friends, his classmates, even worse than other marginalised groups. | really hope
that my submission to this inquiry can help drive this Government to action to improve outcomes for autistic people.
3|Page
Disability architecture and the need for a National Autism Strategy
The reason that a National Autism Strategy is critical is because of the outcomes faced by autistic people. Sadly, across the board autistic people have significantly poorer life outcomes than the broader community and also in many instances than people with a disability. Also, adding to this is that autism is growing in reported prevalence in Australia. Some key statistics that establish this are:
e Prevalence — According to NDIS data, autistic people are the highest proportion of any disability group in the scheme at 31 per cent.
e Education — In 2018, 8.1 per cent of autistic people have a bachelor degree or higher, compared with 16.1 per cent of those with a disability and 31.2 per cent of those without disability.
e Employment — In 2018, the unemployment rate for autistic people was 34.1 per cent, more than three times the rate for people with disability (10.3 per cent) and almost eight times the rate of people without disability (4.6 per cent).
e Health and mental health —
o International studies have found that autistic people have a life expectancy between
20 and 36 years shorter than the general population. o A2019 Australian study found that the premature mortality rates for autistic people was 2.06 times that of the general population, and that the largest increase in risk of
death for autistic people was associated with comorbid mental health conditions. o Between 50-70% of autistic people experience co-existing mental health conditions.
e Social Isolation:
o Research shows that autistic people and their families experience significant social isolation with 51.6 per cent agreeing that they feel socially isolated and 39.3 per cent agreeing that they sometimes feel unable to leave the house due to concerns about discriminatory or negative behaviours in the community.
Across Europe and the US, a number of countries have developed national autism plans or legislation. Analysis by Autism Europe has found that countries that have a national autism plan or strategy appear to bring about a positive impact and change for autistic people, even if they do not
necessarily achieve all their objectives towards the full respect of the rights of autistic people.
The Productivity Commission (PC) in its review of the National Disability Agreement in 2019
proposed a revised disability architecture.
Disappointingly, it appears that the PC did not explore whether disability specific responses were required. A National Autism Strategy could be a complimentary piece to the National Disability Strategy, conveying a more detailed plan.
| would argue that due to the outcomes autistic people face combined with the fact that autistic
people have different needs to other disability groups makes the need for a National Autism
Strategy apparent. | would also suggest that these issues cannot necessarily be conveyed
appropriately in the National Disability Strategy.
In addition, developing separate disability-specific strategies ‘frees up’ the National Disability Strategy to provide more analysis of disability-wide issues, instead of trying to manage both disability-wide and disability-specific needs.
4|Page
| would like to propose the following national disability architecture, which builds on the work of the
PC Inquiry into the National Disability Agreement.
Figure 1 — Proposed National Disability architecture (NB: this is an expanded version of what was proposed by the Productivity Commission)
Intergovernmental Agreement on
Federal Financial Relations
National Disability Agreement Other agreements
- Objective and outcomes
-
Roles and responsibilities + Accountability mechanisms Education Housing
| Skills and workforce
Intergovernmental agreements National Disability Strategy ‘auaie ore NDIS Act and Rules Service interface arrangements Performance indicators Data strategy Policy and program evaluation
National disability-specific plans/strategies
State disability-specific
plans/strategies
National Autism Strategy
For e.g. Victorian Autism
Plan
Intellectual Disability
Hearing
Physical disability
It is not recommended that autism be the only disability that has its standalone national strategy. As demonstrated in Figure 1, it is recommended that the Commonwealth explore the need for other disability-specific strategies to support the National Disability Strategy, such as intellectual disability, hearing and physical disability.
It is recommended that the states also explore disability-specific strategies. The Victorian Autism Plan is a strong example of how a disability specific strategy can support the work of the broader disability plan (in Victoria, it is called the State Disability Plan).
In addition, it is recommended that the National Disability Agreement develops a comprehensive outcomes framework to ensure that there is comprehensive data of people with a disability across the lifecycle and to measure improvement in outcomes. It is further recommended that disability specific strategies include a corresponding outcomes framework. This is the model used by Victoria where the State Disability Plan outcomes framework will be used to model the Victorian Autism
Plan.
5|Page
Recommendation 1 — That a National Autism Strategy be developed to support the broader disability architecture, complimenting the National Disability Strategy.
Recommendation 2 — That the Commonwealth explores developing other national disability specific strategies, such as intellectual disability.
Recommendation 3 — That states and territories undertake their own state-based strategies to
compliment the National Autism Strategy. For example, the Victorian Autism Plan.
Recommendation 4 — That the National Disability Agreement develop an outcomes framework and that the National Autism Plan, model an outcomes framework based on this, to ensure consistency in data collection and reporting against outcomes.
Pre-diagnosis
a (my wife) and | lived in Canberra when i was born in 2012. struggled froma
very early age with separation anxiety. This was first clearly evident from being dropped off at family
day care at around 10 months old. It was excruciating for and | to drop our son off because the
anxiety would start as soon as he was aware that we would be taking him to family day care.
(who is a midwife), and | thought that this was normal developmentally for his age.
Over the months, asi became settled in family day care he was able to acclimatise and grew more comfortable, this was due to the tremendous work of our family day care worker. Unfortunately, she decided to move on and we were forced to seek new child care arrangements.
Our new arrangements at a childcare centre were fantastic but the separation anxiety came with a rush, we also began to notice that ij had developmental delays in speech. This was when was roughly two years of age. Due to this, our childcare worker did advise to seek a psychologist. However, within a few weeks his speech began to take a developmental leap, causing us not to seek a psychologist.
Due to consistency of the staff in his room and also their great love and care for ij his separation anxiety became manageable. However, we were starting to notice his separation anxiety more in
day to day life, asi struggled to be away from either fj or | for more than a few minutes.
was very rarely able to sit down and play by himself without needing us to be around. We also noticed that we could not leave him with family or friends, or go to uncertain environments, without his anxiety taking hold. This was especially true at night where we were required to be in his room to help him get to sleep and then to help him get back to sleep when he woke up, which was between
two and four times a night. [jj and | both knew this was unusual but we seemed to find ways to
manage it through supporting and caring for each other, as well as both of us moving to part-time work. This was the key factor in us not seeking professional help, as we were managing Ji needs, despite the difficulties.
This changed in 2015/16 when i turned three and went up a year and to a different room in childcare. There was a lack of consistency with his childcare workers and the change of environment, made the separation anxiety go to extremes. Drop offs were emotionally traumatic for us as parents. We were discussing about seeing a psychologist but this lost priority due toll having a complicated
6|Page
pregnancy and birth of our youngest boy ii (now four years old). At this time, we also sought to move back to Victoria to be closer to family.
When we moved back to Victoria, fj stayed at home to take care of both of our boys as | had started
a new job. This meant that we were able to manage i needs.
This changed in 2017 when fi started Kindergarten. J struggled with the noise and the unstructured environment and his separation anxiety ‘shot through the roof’. About three months into Kindergarten, we decided to go and find a psychologist to help us with ways to manage his separation anxiety. During this time, Jj had developed friendships with a number of Occupational and Speech Therapists, one of these friends recommended that we get i assessed for autism. This took us as a Surprise, as even though ij had a number of issues, with being developmentally delayed and anxiety, this was the first time anyone had ever mentioned autism.
In retrospect, there were clear signs that ij was autistic but because of our lack of understanding about autism, we did not seek support. We attended multiple maternal and child health (MACH) nurse appointments and GP appointments and spoke at length about what we were facing with i It was never raised or discussed.
For this reason, | recommend that MACH nurses and childcare workers/kindergarten teachers be
trained in identifying autism. In Victoria, MACH nurses are now being trained in identifying autism
by the Olga Tennison Autism Research Centre, and | recommend that this be taken nationally and be
extended to childcare workers and kindergarten teachers. Childcare workers and kindergarten teachers, in particular, are professionals who can spend the most time with a child, outside of their parents. If these people are trained in identifying autism, this would increase the chances of children like being identified early and ensuring that they get the early intervention that they require.
Recommendation 5 — That MACH nurses, childcare workers and kindergarten teachers are trained in the early identification of autism. This will ensure that autism identification and diagnosis are not missed and that early intervention can start as soon as possible.
Furthermore, that childcare workers and kindergarten teachers are trained in supporting autistic children.
To help MACH nurses, childcare workers and kindergarten teachers to be able to detect the early signs of autism, it is recommended that they are provided access to ASDetect. This is an excerpt of ASDetect:
ASDetect is a free app that empowers parents and caregivers to assess the social attention and communication behaviours of their children younger than 2% years (between 11 and 30 months). This video-led self-assessment app is based on comprehensive, rigorous, world-class research conducted at the Olga Tennison Autism Research Centre. The research underlying this app is 81% accurate in the early detection of autism and other related developmental conditions.
ASDetect guides parents through each assessment using a combination of videos and questions, as well as activities that you can do with your child. Each assessment will take between 20 and 30 minutes to complete.
7|Page
Once you have completed an assessment, you receive both an on-screen result of either ‘low’ or ‘high’ likelihood of autism, as well as a comprehensive formal assessment results email.
Recommendation 6 — That ASDetect be provided to MACH nurses, childcare workers and kindergarten teachers to help support the early identification of children.
Assessment and Diagnosis
a and | tried to find a psychologist and we thought we found one that would be able to assist us
with an autism assessment and help us to identify strategies to manage anxiety. It turned out that the psychologist was a psychotherapist and although we advised them clearly that we were seeking an autism assessment, we did not get one after attending four appointments (and costing $800). The psychotherapist also made us quite distressed by saying that ij had a difficult and traumatic childhood, due to changing childcare centres, moving interstate and having a younger brother. We vehemently disagreed and considered this part of a normal child’s life. It was clear that we were not going to get what we required from the psychotherapist and searched for a new psychologist.
Unfortunately, | have heard of many similar stories from families, we have even heard an almost
identical experience with the same psychotherapist.
| | spoke to the local Child and Adolescent Mental Health Service (CAMHS) who are funded in
Victoria to provide public autism assessments and was informed that it would take 18 months for it to occur, though anecdotal evidence suggests that it can take over two years to get an assessment, particularly in low socioeconomic areas. It is understood that CAMHS are under-resourced and have to deal with crisis youth and adolescent mental health incidents. At the time, we agreed that since
| | would be starting primary school next year that it was important for us to find out as soon as
possible andj identified a nearby psychologist that could provide an autism assessment.
The psychologist we found provided the ‘gold standard’ autism assessment, which included an assessment with a paediatrician, speech therapist and psychologist. The assessment took about one month to complete and cost over $3,000 to undertake. Luckily, we had some savings that was supposed to be for our first house that we utilised for the assessment. Unfortunately, many families would not have the capacity to afford such a significant expense for an autism assessment. Due to this it is recommended that the Federal Government engage state governments to improve waiting times for autism assessment and diagnosis and that no person should have to wait more than three months to get an assessment, to ensure intervention can occur as early as possible.
This should include consideration of adequate service provision for regional areas. It is suggested that a hub and spoke model, would be an effective model, given the disparity in accessibility for paediatricians and psychologists in metropolitan versus regional areas.
Recommendation 7 - The Federal Government engage state governments to improve waiting times for autism assessment and diagnosis and that no person should have to wait more than three months to get an assessment, to ensure intervention can occur as early as possible.
8|Page
Recommendation 8 — To improve wait times that dedicated autism assessment services are developed nationwide, utilising a hub and spoke model to ensure timely assessment and diagnosis in
regional areas.
In addition, to ensure the dedicated autism assessment services are cost-effective, it is recommended that the National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorder in Australia is followed. The National Guidelines advise that a single diagnostician (i.e. that is a psychologist or paediatrician), instead of a diagnostic team can make an assessment and that evidence suggests that it is not any less effective or leads to more misdiagnoses. The National Guidelines suggest utilising a diagnostic team if a single diagnostician cannot determine a diagnosis.
The Coalition made an election commitment to implement the National Guidelines. Installing dedicated autism assessment services with a primary focus on providing single diagnostician services would be a cost-effective way of implementing this commitment.
Recommendation 9 - The Federal Government implement the National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorder in Australia as part of its election commitment. As part of this, engage state governments to develop dedicated autism services with a single diagnostician model as the primary model.
Adult autism diagnosis
The current Medicare Benefits Schedule does provide rebates for children under 13 years of age for assessment and diagnosis. However, this system does not provide equity as there are no Medicare items to recover the costs (in whole or in part) of an autism assessment and/or diagnosis for people aged over 13.
A range of factors may cause a person not to be assessed and/or diagnosed until adulthood. For example, there is an ongoing lack of knowledge among health professionals of how autism can present (in children and adults), including failures to delineate between autism and mental health conditions (such as anxiety or depression) or recognise the co-occurrence of autism with a mental health condition.
For many autistic people (particularly autistic women), their diagnosis of autism or decision to be assessed for autism may not occur until adulthood, following many years of anxiety, social difficulties, and challenges entering and maintaining employment.
However, the cost of autism assessment can be a significant barrier for adults seeking a diagnosis (our personal experience was over $3,000) as well as the difficulties with finding an appropriate practitioner.
The Allied Health Reference Group of the Medicare Benefits Schedule Review Taskforce,
recommended to increasing the age limit for MBS items related to assessment and diagnosis to 25 years of age. However, it is recommended that the age limit be lifted to ensure equity for autistic adults and that barriers for seeking diagnosis are removed.
Recommendation 10 — That the Medicare Benefits Review Taskforce remove the age limit for MBS items related to autism assessment and diagnosis to ensure that there is equity within the system
and that barriers are removed for adult assessment and diagnosis.
9|Page
Post-diagnosis
It was a shock to be told that our i was autistic. Our lives had just been put on another unexpected trajectory. My biggest concern at the time was whether ij would be able to start primary school next year. Was he ready? What sort of intervention would he require? Where could we access it? How much would it cost? The next thoughts were more long term — would fi be able to live independently? Would he be able to get a job? Find a partner? Have children? Our expectations for what i life would be had changed dramatically. We also knew that for all of the love and support we provided ii life would have more barriers for him to overcome.
Once we had a diagnosis, had around six months before he started prep (first year of primary school in Victoria), so we decided that a priority would be to get him therapy with the aim of getting him prepared for primary school. This would test whether primary school was the best thing for him at this point at time. We also started the NDIS process for i
| undertook research and found that ABA therapy had a significant evidence base demonstrating its
effectiveness (and that it needed to be intensive, around 20 hours per week), though | noted that
accredited therapists are few and far between in Australia. This is because it is an American qualification through the Behavior Analyst Certification Board (BACB), noting that you can now be
certified through Monash University and | also believe at Griffith University. | engaged a couple of
ABA Australian experts directly, including an independent ABA expert who was not business affiliated, as well as Amaze’s helpline and also the Autism Behavioural Intervention Association (ABIA). We ended up choosing an ABA accredited business. We were told that it would cost $70,000 per year and decided to undertake it, given the evidence base and that we understood this was the best ABA provider in Australia. We knew the expense but decided to use our savings we had for our
first house to give i what | thought was the best chance.
Our first initial assessment was roughly $1,000. During this, we were clear that we wanted to get
| | therapy as intensive as possible, so we could assess whether he was ready for school. The next
step was an intensive assessment, which cost around $3,000. During this it became clear that we would not get level of intensity required until a couple of weeks before Ii was due to start school. This was unacceptable and we decided to end our engagement with the ABA company, luckily agreeing not to pay the $3,000.
| was disenchanted, but luckily had been researching local options and ii began weekly speech
and occupational therapy. We also undertook hydrotherapy and a range of other short-term social skills and school preparation courses. After getting this therapy and through conversations with our therapists, it was agreed that fj was ready for primary school.
NDIS
Overall, we have found the NDIS to be a positive experience as it has enabled our children to access supports that would not be financially possible otherwise. However, there are a range of issues with the NDIS, which are discussed in further detail below.
Please see these comments through the prism of our privilege, as we have access to friends and
family who are professionals in fields related to disability, and | also have spent a considerable part
of my career developing policy for or advocating on behalf of people with a disability. As you read
the issues we have faced | would like you to try and multiply these barriers for people who do not
10|Page
have the same access, such as, whether English is a second language, recent migrants, whether they are single parents, whether the parents also have a disability, if they are Aboriginal and Torres Strait Islanders or if simply they do not have the access to the knowledge on the NDIS and appropriate
supports that fj and | are privileged enough to have.
NDIS - waiting times
There were a range of issues that we faced in accessing the NDIS. The biggest issue was that we waited 280 days from our first initial meeting to getting funding; our full complaint sent to the NDIS from 2018 is in the Appendix. We calculated that we spent over $12,000 on therapies for iii during this time. This meant that we spent a large amount of our house deposit, an amount that we have yet to recover from.
Through this | have seen the Federal Government take many steps to reduce wait times for children
accessing the NDIS and have reduced the wait times significantly. However, | still have my concerns
and these have been exacerbated by going through the NDIS process for our other son | | | |
has been diagnosed with global developmental delay.
Please remember when reading this next section that the NDIS has a 21-day guideline to respond to NDIS Access Requests, once a full application is submitted.
a applied to the NDIS through our local ECEI, in early October 2019. This required filling out an ECEI application and also getting a number of assessments undertaken. During the application process, she was told that we would have to be appointed an early intervention coordinator and that this could take many months. This seemed inconsistent with the NDIS guidelines for 21-day Access
Requests. Three months later (in late December), | raised concerns about the delays and found out
that the ECEI partner does not send a completed application through to the NDIS until a coordinator had been assigned and a meeting occurred with the family. The issue was that we had been waiting to be assigned a coordinator for three months and were given no assurances that it would happen in the short term.
During this time, | called the NDIS and was informed that | could do an NDIS Access Request over the
phone. When | raised this with the ECEI, they confirmed this was another avenue. No one at the ECEI
had informed us previously of this alternative avenue that could potentially significantly speed up the access request process.
| understand that ECEI partners are under significant pressure but informing us that there was an
alternative avenue that would speed up our access request and also relieve some of this pressure on their service, seems like a logical decision. Given this, it does not make sense why the ECEI did not promote it. Personally, the actions of the ECEI, whilst not in breach of the 21-day guideline, did not feel like they were in good faith of the guideline.
| completed an online access request with the NDIS around 6 January 2020, completed the
paperwork and attached assessments over the next few days and sent them back. | received a letter
by the NDIS on i approval to the NDIS on 21 January 2020. It took around 15 days to complete an access request directly engaging the NDIS, noting that in this time we had not heard from the ECEI about a coordinator or a meeting (over three and a half months from when we sent our
11|Page
application in October 2019) — it could potentially have taken many months more for ii to get access following the ECEI approach.
This makes me question whether the data on ECEI wait times are accurate as the 21 days for an NDIS access request does not start until the ECEI submits an application. If the ECEI takes months from when the application is completed, to assign a coordinator and organise a meeting, it is not recorded by the NDIS data. Either way, it is very concerning that this behaviour is occurring at all.
The 2019 review of the NDIS Act and the new NDIS Participant Service Guarantee (commonly known
as the Tune Review), found that:
“Delays in decision-making and a lack of information are two of the most regular complaints about the NDIS, with many participants indicating they have had to wait many months for the NDIA to contact them or make a decision.”
The Tune Review also notes that “the legislation is silent on when the NDIA will make decisions. In
a”
most instances, it prescribes that a decision will be made ‘as soon as reasonably practicable’. The Tune Review recommends as part of the consideration of a Participant Service Guarantee that:
“From 1 July 2020, new legislated timeframes should be introduced for the vast majority of the NDIA’s decision-making processes, including:
e extending the timeframe for participants to provide information to support an access decision from 28 days to 90 days
¢ aparticipant’s first plan be put in place within 10 weeks of an access decision reducing to eight weeks from 1 July 2021
¢ aplan implementation meeting to be offered and scheduled no more than four weeks after the approval of a plan
¢ ascheduled plan review to commence no later than eight weeks before the scheduled plan review date
e providing certainty that if the NDIA does not make a decision to undertake an unscheduled plan review within three weeks, it is deemed to have decided to conduct the review
¢ anunscheduled plan review process to be completed within six weeks of a decision to conduct it, reducing to four weeks from 1 July 2021
e the new plan amendment process, which covers the quote approval process for assistive technology and home modifications, to be completed within four weeks following the provision of information to the NDIA, except for complex circumstances
e the internal (merits) review process to be completed within 90 days, reducing to 60 days from 1 July 2021.”
Other important recommendations of the Tune Review include:
e “The NDIA trials an arrangement where all planning related functions are undertaken with a person who has delegation to approve the plan, and compares the benefits of that approach with the roll out of Joint Planning Meetings.”
12|Page
| agree with this recommendation as it would reflect a shift in the way the NDIS is currently
implemented, towards the model originally envisaged by the Productivity Commission. The reason |
support this is because Local Area Coordinators (LACs) currently have a role of ‘collecting information’ and are more seen as a conduit. The issue is that LACs only have very limited decision making powers, putting them in a difficult position. The reason it appears that LACs took on the ‘planner’ role was to meet with the demands of the NDIS transition. Now the NDIS is at full scheme, it is recommended that a slow tapering of the LACs role as ‘planners’ be moved back to the NDIS.
e “The Commonwealth provides additional funding to support people with disability to navigate the NDIS, with a review of demand to occur as part of the next review of NDIS costs, currently scheduled for 2023.”
| support this recommendation because of the difficulties that my family had in navigating a system,
despite having considerable knowledge and contacts that cannot be expected of others in the
community. | saw the work of Amaze’s autism advisers and Amaze’s Autism Community Support
Program, in helping assist people who struggled to navigate such a difficult system.
e The NDIA develops a comprehensive national outreach strategy for engaging with people with disability who are unaware of, or are reluctant to seek support from the NDIS, with a dedicated focus on Aboriginal and Torres Strait Islander peoples, culturally and linguistically diverse communities, and people with psychosocial disability.
This recommendation builds on the last one to ensure that people have access to the NDIS. From my understanding, during transition, the Victorian Government had dedicated teams to help state based client’s transition to the NDIS, including people that were ‘hard to reach’. Now the NDIS has fully transitioned, these services will not be continuing so it is critical that the NDIS builds its capacity for outreach and support.
Recommendation 11 — That the Commonwealth accept and implement all recommendations of the Tune Review, in particular in relation to the Participant Service Guarantee, providing outreach services and supports, additional funding to assist people with a disability to navigate the NDIS and planning related functions.
NDIS - impacts on informal carers
The establishment of the NDIS was supposed to bring a revolution, not only to people with a disability but also to carers. The 2011 Productivity Commission report into the establishment of an NDIS (titled: Disability Care and Support) estimated that about $1.5 billion per annum of economic
benefits would occur from carers re-entering the workforce.
However, | am asserting that these benefits are not being fully realised due to a number of reasons:
e the lack of accessibility to support coordination and case management e the bureaucratic nature of the NDIS
e the difficulty with finding suitable supports
e the difficulty in maintaining suitable supports
e the time and energy to provide therapy within the family
13| Page
It is particularly difficult to access autistic supports and therapies given the high demand for such services. To put this in perspective, in the last six months, my wife has had to find three new providers for speech and occupational therapy — that is because both of our therapists moved and the other decided to shift their practice. Finding suitable providers has become more difficult due to the significant demand for services and the need to find the right fit.
Due to these difficulties, we have given up in trying to find suitable allied health assistants as well as group therapy and have been told that the waiting times for a key worker are significant. In relation to group therapy, we have been advised that it is profit neutral or only provides a small margin for businesses, even though the evidence base for the benefits is strong. This is the reason that it is difficult to find suitable group therapy services, with many services closing waiting lists due to the demands.
In our family, with two children in the NDIS, we have struggled to maintain having two working parents. At present, we do have two working parents, but this is because my wife only works one shift a week. We as a family have tried to maintain our commitment to the workforce for both parents, even though we have had numerous discussions that it would be easier if one person was a full-time carer.
My wife does a fantastic job trying to balance the role of mother, therapist and support coordinator. If it was not for her love and commitment, we would not have seen the significant developmental improvements for both our children.
NDIS data supports this claim that the impacts for carers have not been fully realised.
Data from the Report for the COAG Disability Reform Council Q3 for 2019-20 finds that:
e less than 50 per cent of carers are in a paid job
e between 43 — 58 per cent say they (and their partner) are unable to work as much as they want
e for those who say they are not able to work as much as they want, a minimum of 86 per cent of carers say the situation of their child/family is a barrier to them working more
e under 50 per cent say they are able to visit friends and family as often as they like
Recommendation 12 - The Select Committee:
-
Recognise that the greater the support requirements for a person with a disability, the more that the wellbeing of the person with disability becomes intertwined with the carer.
-
As part of this inquiry, gather evidence targeting how to improve impacts for the NDIS for carers
-
Recommend a trial for a supplementary plan for carers of family members with complex support needs to test if this would lead to improved outcomes for people with a disability and carers.
NDIS - eligibility criteria
The NDIS currently uses the DSM-5 to assess a person’s suitability for the NDIS. The issue with utilising the DSM-5 autism diagnostic levels is that it is a subjective professional assessment that can change between assessors. DSM-5 clearly states that the severity levels should not be used to
14|Page
determine eligibility for service. An example is that a friend of mine had a child that was assessed to be at the three different levels by three different assessors.
A further issue is that there is anecdotal evidence that assessors will exacerbate the severity levels for autistic people to be a level two or three to increase the chances for getting ongoing supports.
It is recommended that instead of developing assessment tools to find ways to exclude autistic
people, that all autistic people are eligible for the NDIS. | suggest that over time that if interventions
are effective that the spending on supports will reduce for autistic people.
Recommendation 13 — That all autistic people are eligible for the NDIS
NDIS - intensity of early intervention therapy
A report commissioned by the NDIS recommended that children with an autism diagnosis should receive 20 hours per week of intensive early intervention. Despite this, there is evidence funding is not matching these needs (noting that 20 hours does not necessarily mean 20 hours of paid therapy, as parents have an important role in providing early intervention therapy).
Anecdotally, it is a well held opinion that the NDIS is afraid that the growing number of autistic
people will lead to a cost blowout. If this is the case, | invite the NDIS to engage autistic people and
their families to find mutually beneficial solutions instead of undertaking activities that are perceived as trying to limit or take away access for autistic people.
Recommendation 14 — That the NDIS engage autistic people and their families openly about seeking options to reduce potential cost blowouts, should they exist.
NDIS Thin Markets
There are a range of thin market issues that the NDIS is currently facing, such as access to
appropriate allied health professionals in regional, rural and remote areas. Anecdotally, | have heard
that Tasmania does not train any allied health professionals on the island, which causes a chronic
shortage, as they have to import allied health professionals from the mainland. | would like to raise
two thin markets that the NDIA should intervene in, given the lack of market to support service provision.
Complex needs
It is critical that the Select Committee hear the voices of autistic people with complex needs and their families to understand what they need and to develop options of how governments can best support them.
Recommendation 15 — That the Select Committee hold a series of roundtables with autistic people with complex needs and their families to understand how governments can best support them and meet their service needs.
Positive behaviour support
Positive behaviour support is a critical support that can be used to great effect. It can be used to help assist as a strategy when behaviours of concern arise, and can help prevent the need for restrictive practices.
15|Page
However, it can be a difficult process to do effectively and thus it is important that trained behaviour support therapists are used, when required. The issue is that positive behaviour support therapists are in dire need.
| remember a person working for Austin Health informing me that she was aware of a circumstance
where a positive behaviour support specialist was flown to Melbourne from their base in Sydney on a regular basis to provide behaviour supports. This example is extreme but illustrates that this is a sector where investment is required to ensure that future demand is met.
Recommendation 16 — That the NDIS seek to directly intervene in the market to build the positive behaviour support workforce.
School
State governments receive funding for disability supports through a loading for students with disability provided by the Commonwealth Government.
According to Department of Education website:
Students with disability who are counted in the top three levels of the NCCD (supplementary, substantial and extensive) attract additional funding through the student with disability loading, regardless of the state in which they live. Funding is based ona per student primary and secondary amount at each of the three levels of additional support. The amount of the loading reflects the level of support students with disability need to participate fully in school, with higher funding for those who need higher levels of support.
The loading for students with a disability in 2020 is provided below:
Table 1: 2020 students with disability loading by NCCD level of adjustment
SRS funding amountin 2020 Supplementary Substantial Extensive Primary student $11,747 42% ($4,934) 146% ($17,151) 312% ($36,651)
Secondary student | $14,761 33% ($4,871) 116% ($17,123) 2486 ($36,607)
The National School Resourcing Board recently undertook a review of the disability loading, with the
Australian Government response released in July 2020. It found that the loadings should stay the same and over two years invest in building an evidence base to help refine the costing model.
The issue is that the review did not appear to look into the NDIS and trying to ensure consistency
within both systems. | would contend that any child that is given access to the NDIS should also
receive school funding. It is a logical assessment that any child that has barriers to everyday life will also have barriers in learning. It is also understood that whilst disability loading is applied consistently through the Nationally Consistent Collection of Data on School Students with Disability (NCCD) that the states and territories apply that funding differently. For example, when reached school age, we were informed to not bother applying for school funding as he would not qualify for funding. This is because in Victoria, funding for the Program for Students with Disabilities (PSD) is applied differently than to the NDIS. To be eligible for PSD funding on the autism spectrum, you
need to have:
16|Page
e adiagnosis of autism spectrum disorder, and
e significant deficits in adaptive behaviour established at a composite score of two standard deviations or more below the mean on an approved standardised test of adaptive behaviours, and
e = significant deficits in language skills established by a comprehensive speech pathology assessment demonstrating a composite score of two standard deviations or more below the mean.
This inconsistency between funding eligibility between two systems does not make sense considering the aim for both systems is to provide the environment for the child to thrive. Every child that receives NDIS funding should be eligible for education funding, irrespective of where they live and how that funding is administered.
Recommendation 17 — That any child eligible for the NDIS should be automatically eligible for education related disability supports
Furthermore, since the NDIS began there was consistent issues about ‘who was responsible to pay for what’ — whether it was an educational tool or whether it was for therapy purposes. This line can be very blurry and it appears that Commonwealth and state governments have largely resolved these issues with a few exceptions (disability transport and personal care in schools).
However, figuring out which level of government is responsible for funding completely missed the point for what families are after. We do not care which level of government pays for the support, only that if it is deemed that it is a necessary support - it is paid for. The Government should undertake a trial of developing a way to join up payments systems between Commonwealth and state government to make it easier for families to pay for supports without needing to engage separate systems and determining who is responsible for paying what. It should be simple, clear and consistent, putting the user first, instead of a systems-first approach.
Recommendation 18 — That Commonwealth and state governments trial a one stop shop payment system for paying supports for any child eligible for NDIS and education supports — to ensure that it is user friendly for families to get the supports they require (irrespective of who is responsible).
A further issue is the lack of transparency of funding received to support children with a disability. In Victoria, schools determine how total funding (including the PSD) is used to support each student. Schools will consult with the family (and the student, where appropriate) but overall the final decision is made by the school.
This can lead to outcomes such as pooling funding from multiple students in a classroom to provide general supports to assist those children in need, without necessarily providing targeted supports that suit the individual child’s needs. Such practices create issues for transparency and accountability, and the ability to track whether these supports lead to improved outcomes. This has been supported by the Review of the Program for Students with Disabilities, which found:
Research and evidence indicate that there are significant issues with a lack of transparency and accountability for the learning outcomes for students with disabilities. For example in 2012, VEOHRC reported that there was no means to assess:
e the educational progress of all students with disabilities
17|Page
e the results of school interventions e whether or not interventions are being implemented ¢ how schools are performing in relation to inclusion and non-discrimination.
Research also indicates there is a lack of accountability in the use of funding and insufficient data to determine efficient and effective use of funding. There is no evidence or systemic data collection to show how resources have been applied and what has been successful or unsuccessful, which limits the Department’s and schools’ ability to make informed funding decisions.
It is understood that education disability supports cannot be completely individualised, with control of funds held with the individual or the family, as the school has responsibilities to other students and have expertise on what is effective and what is not. However, it is not appropriate that schools have predominant control of where funding is distributed either, there needs to be more of a balance between children, families and schools about where funding is allocated.
Recommendation 19 — That Commonwealth works with state governments to improve transparency and accountability of education disability supports, it is suggested a ‘middle path’ of dual sign off, where funding allocation is approved by both the school and the children/families.
Research indicates that current practice is for the role of Education Support (ES) staff (commonly referred to as teacher’s aides) in schools to support student learning, rather than being limited to administration and support. However, there has been some criticism in the literature that ES staff are not appropriately trained to support the educational needs of students and that a lack of training has potential to cause adverse outcomes in student learning, social inclusion and student independence. For example, students interviewed in the studies indicated that the need for an aide can be a source of embarrassment and can reduce opportunities for independent social interaction. The requirement for students to have an aide in the classroom can also result in-class segregation from peers. Evidence suggests that aides focus on task completion more than engagement in learning. The informal way in which ES staff are recruited is also problematic, particularly as they may be relied upon as the school’s primary strategy for inclusion.
Recommendation 20 — It is recommended that the Commonwealth work with states and territories to undertake a review of Education Support staff and their role in supporting children with a disability and implement the findings. This review should include assessment of whether they have the competency to support students with disabilities and the mechanisms to improve training consistently, across Australia.
The Urbis Review of the Disability Standards for Education conducted in 2015, found that resolution
of formal complaints usually occurs through confidential conciliation and this limits the contribution the complaints process makes to systemic improvement over time through precedent setting and publicity. Recommendation 10 of the Urbis Review recommended that government explore the feasibility of a nationally consistent monitoring and accreditation model to strengthen proactive compliance.
Such an issue where the Disability Standards are not upheld is with school refusals. School refusal is an issue that is known to many parents of children with a disability, even if it is not expressed in such
blatant terms. | have personally heard of stories where schools say that ‘they cannot support a
18| Page
student anymore’ that ‘perhaps the child will be better served at another school’ or by just by making life difficult for the child and the family to the point where it seems moving schools is the only viable option. Apparently, the Queensland Government has a system whereby the education department is made aware of any such school refusal, and then contacts the school directly. This model appears to be an exemplary way of proactively upholding the Human Rights and the Disability Standards for Education.
It is understood that the Disability Standards are under Review. A more proactive model of compliance monitoring would lead to more consistent implementation of the Standards. The 2020 Review of the Disability Standards should move to include more proactive compliance.
Recommendation 21 — That the 2020 Review of the Disability Standards should move to include more proactive compliance measures and test such models with the disability community, including with autistic people.
There is anecdotal evidence suggesting that special schools have varying degrees of quality in terms of educational outcomes and the ability to improve independency. The factor of low expectations set could also be a determining factor in the life outcomes of students with disabilities. It is recommended that the Commonwealth work with state governments to undertake a review of special schools.
Recommendation 22 — That the Commonwealth work with state governments to undertake a review of special schools. That this review should focus on maximising the educational and independent outcomes for students with disabilities.
Autistic people generally need specialised supports for key transitions at school, so that they are prepared for what comes next. It is recommended that schools provide funding to ensure these specialised transitions are available for autistic children if they require it.
Recommendation 23 — That specialised transition supports are provided to autistic children if they require it.
VET and Higher Education
The ABS reported that in 2018, autistic people are less likely than others to complete an educational
qualification beyond school and have needs for support that differ from people with other disabilities. 8.1 per cent of autistic people had a bachelor degree or higher, compared with 16.1 per cent of those with a disability and 31.2 per cent of those without disability. All people with disability and those with no disability were also more likely to have an Advanced Diploma, Diploma or Certificate IIl or IV than autistic people.
19| Page
Highest level of educational attainment by whether has autism, has a disability or does not have a disability(a), 2018
=e No disahainy @ All with disability @ All with Autign Spectrum Disorders.
Footnote/s): (a) Living in households
Source(s): ABS Survey of Disability, Ageing and Carers: Summary of Findings 20718
It is understood that there have been some changes to the Higher Education Disability Support Program. The greater flexibility offered and changes to ensure that students with high costs needs are adequately supported.
However, the government did not provide any targeted initiatives to support improving university attainment for autistic students. Given the data, the government should develop some targeted initiatives to support autistic students in higher education.
Recommendation 24 — That the Commonwealth Government provide funding for some targeted initiatives to improve the Higher Education attainment for autistic people. This should include transition supports (see Recommendation 23).
Employment
The ABS reports that in 2018, the labour force participation rate for autistic people was 38 per cent among the 94,600 people of working age (15-64 years). This is compared with 53.4 per cent of all working age people with disability and 84.1 per cent of people without disability.
The unemployment rate for autistic people was 34.1 per cent, more than three times the rate for people with disability (10.3 per cent) and almost eight times the rate of people without disability (4.6 per cent).
The Commonwealth announcement in June 2020 of additional funding to support autistic
employment is welcome, however, it is not on a sufficient scale to provide any considerable impact for improving autistic employment rates.
The Commonwealth should explore opportunities to encourage and incentivise employment of autistic people at a more system-wide level (instead of targeted initiatives), such as providing tax incentives for businesses that prove they meet employment targets for autistic people. Such targets could be broadened to include other groups such as all people with a disability, older Australians and the long term unemployed.
20|Page
Recommendation 25 — That the Commonwealth Government explore tax incentives for businesses that prove they meet employment targets for autistic people. Such targets could be broadened to include other groups such as all people with a disability and the long term unemployed.
The Government committed before the election to introduce a new 7 per cent employment target
for people with disability across the Australian Public Service (APS) by 2025. This is welcome but is
not really sufficient, given that people with a disability make up around 20 per cent of Australia’s population. The APS has some promising initiatives such as Stepping Into… internships and the Dandelion Program, and the affirmative measures for specific roles. However, these programs are not at sufficient scale. A potential additional measure would be to have a dedicated graduate stream for people with a disability, including autistic people — although this would not fix the issue of scale, it would be another complimentary measure that would build employment of people with a disability in the APS over time.
Recommendation 26 — That the APS provide a graduate disability stream (including for autistic people)
Health and Mental Health
Evidence for the health and mental health outcomes for autistic people e International studies have found that autistic people have a life expectancy between 20 and
36 years shorter than the general population. e A 2019 Australian study found that the premature mortality rates for autistic people was
2.06 times that of the general population, and that the largest increase in risk of death for autistic people was associated with comorbid mental health conditions. e Between 50-70% of autistic people experience co-existing mental health conditions.
e = The Victorian Autism Inquiry found that accessing mainstream health services (such as
hospital emergency departments, dental services, and mental health facilities) had various challenges for autistic people due to the sensory sensitivities, communication difficulties, a lack of collaboration between services, and a lack of autism competency on how to best support autistic people among health professionals.
e The Victorian Autism Inquiry also found that autistic children and teenagers are 10 times
more likely to be admitted to hospital for medical illnesses and complaints.
Health
Given the health outcomes faced by autistic people it is important that the Select Committee review international best practice in how to improve health care for autistic people and make recommendations to improve these outcomes.
Recommendation 27 — That the Select Committee undertake a review of international best practice in how to best support autistic people within mainstream health services, including reproductive health care and develop recommendations to improve outcomes.
Mental Health
As mentioned previously, the first sign of i autism was through his anxiety symptoms. | can
already see it impact his decision making to the point where he is missing out on opportunities
21|Page
because his anxiety takes hold. | personally believe that this will be the most significant issue he will
have to manage and overcome during his life. | also believe that his anxiety is delicately balanced
and could severely impact his life outcomes.
The Amaze submission into the Victorian Royal Commission for Mental Health provides a clear
picture of the mental health issues facing autistic people.
The evidence in the Amaze submission clearly establishes that current mental health service provision is not supporting autistic people. It is expected that such issues will be consistent on a national scale — hence why developing a service and a clinical practice model for supporting autistic people with their mental health is critical. These models should include how supports can be provided to autistic people in regional areas.
Recommendation 28 — That a service model be developed that sets out how the mental health system can provide appropriate support to autistic people, including for autistic people in regional areas.
Recommendation 29 — That a clinical practice model be developed to support mental health in autistic people generally, and for adolescents and adults more specifically, including in regional areas.
In addition to this, there is also an opportunity to build the understanding of autism within the mental health community. The Commonwealth can take a leadership role through the various levers it has, such as the National Mental Health and Suicide Plan, National Health and Medical Research Funding and through funding agreements with mental health service providers.
Recommendation 30 — That the Select Committee coordinate Australian Governments to engage with autistic people and the autism community to build understanding of mental health and autism, current barriers to diagnosis and support and how healthcare services may better tailor their supports to autistic people. This understanding should then be filtered into:
- The next National Mental Health Plan and implementation Plan;
- Opportunities for research funding under the National Health and Medical Research Council; and
- Funding agreements for mental health service providers. The Amaze submission also notes that restrictive practices have a negative effect on health, wellbeing and the quality of life for people with disability.
It also notes that significant steps have been taken to eliminate restrictive practices (including ona national scale) in disability service settings. However, this work needs to be broadened to include the mental health and health sector.
Recommendation 31 — That the Commonwealth government develops a nationally consistent framework for eliminating restrictive practices, across all service settings, including health and mental health.
22|Page
Justice
Unfortunately, there is little known about autistic people and their interactions with the justice system. From my anecdotal understanding, autistic people are more likely to be victims rather than
perpetrators of crime. | have also heard about issues with autistic people being inadequately
supported when they are victims of crime. It is important that people in the criminal justice system who engage with autistic people educate themselves to properly support autistic people.
Furthermore, from what | have witnessed, there is a concerning trend that autism is being raised to
defend clients that have committed crimes, in a bid to gain leniency. This feeds into a public misconception that autistic people are more likely to be violent. The issue with this is that it can raise a stigma and a fear of autism in the broader community, due to the lack of understanding of autism.
Recommendation 32 — That resources are made available to support the criminal justice system to support autistic people including on how to appropriately report on autistic people (so as not to perpetuate stigma)
There is also a perception that autistic people are over-represented in the criminal justice system and that there is also a high likelihood that there are a number of autistic adults undiagnosed in the criminal justice system. There is also a lack of data on autistic people in the criminal justice system and appears to be a lack of capability to get an assessment and diagnosis of autism once in prison.
Importantly, autistic people within the criminal justice system should receive therapeutic treatment to see if this will provide the necessary treatment to reduce recidivism. This is particularly important for those who are undiagnosed, which is why assessment and diagnosis within the criminal justice system is critical. It is noted that people in the criminal justice system cannot get access to paid therapies and supports through the NDIS, so other mechanisms should be explored to provide these services.
Recommendation 33 — That the Select Committee review current evidence base of autistic people in the criminal justice system and explore whether the Commonwealth should work with states and territories to improve data on autistic people and their engagement within the criminal justice system.
Recommendation 34 — That autistic people receive therapeutic supports whilst in the criminal justice system and that assessment and diagnosis can be accessed.
Autism research The Autism CRC will be wound up in the coming years. First established in 2013, it is my understanding that the Autism CRC’s term will end in December 2021.
The work of the Autism CRC and also of other organisations such as the Olga Tennison Autism Research Centre have significantly progressed research on autism. The concern is that a significant chunk of research funding will be lost once the Autism CRC is wound up.
The Commonwealth should explore contingency plans to ensure that when the Autism CRC is wound up that funding for autism research is maintained and not lost. It is also recommended that the NDIS
23 |Page
hold dedicated funding rounds to undertake research that will be relevant to understanding best practice approaches for people with a disability (including autistic people).
Recommendation 35 — That the Select Committee explore options to ensure that autism research funding is maintained, post the wind-up of the Autism CRC.
Recommendation 36 — That the NDIS hold dedicated funding rounds to undertake research that will be relevant to understanding best practice approaches for people with a disability (including autistic
people).
Disability advocacy The Australian Autism Alliance 2019 Federal Election Manifesto outlined the issues in disability
advocacy, including for autistic people. Commonwealth and state governments both provide separate funding to disability advocacy agencies across Australia.
There are a number of key issues facing disability advocacy, including a lack of funding growth, extra demand for services created largely by the NDIS, and a lack of clarity around future funding arrangements.
For autistic people, general disability advocacy groups tend to lack understanding of their needs and there is a need for user-led advocacy groups, such as the Australia and New Zealand Autistic Self Advocacy Network (ASAN). Autistic-led advocacy groups can build autism competency within general advocacy groups, as well as directly support autistic people.
The Liberal National Party made an election commitment to reform the national delivery of
advocacy services for people with disability from 1 July 2020. It is unclear whether such reform has occurred. If not, it is important a review is undertaken promptly to fix the uncertainty for advocacy providers.
It is important that such reform:
e Explores collecting data on disability advocacy and its outcomes, linked to data held by the NDIA (as recommended by the 2017 NDIS Costs Report — see recommendation 10.4)
¢ Develops a nationally consistent approach to disability advocacy, outlining clear roles and responsibilities for Commonwealth and state and territory governments, including an ongoing and consistent funding model;
e Ensures funding meets the demand for disability advocacy, specifically due to the increased demand driven by the NDIS; and
e Provides consistent funding under different advocacy models, including training to support disability advocacy organisations to build their autism capacity in leadership and governance.
It is important that such reform occurs, given the benefits of disability advocacy. This is demonstrated by the Disability Advocacy Network Australia (DANA) reporting that every dollar used by Australia’s independent disability advocacy agencies delivers $3.50 in benefits.
Recommendation 37 — That the Government uphold its election commitment to reform the national delivery of advocacy services for people with disability. It is important that such reform:
24|Page
-
Explores collecting data on disability advocacy and its outcomes, linked to data held by the NDIA (as recommended by the 2017 NDIS Costs Report — see recommendation 10.4)
-
Develops a nationally consistent approach to disability advocacy, outlining clear roles and responsibilities for Commonwealth and state and territory governments, including an ongoing and consistent funding model;
-
Ensures funding meets the demand for disability advocacy, specifically due to the increased demand driven by the NDIS; and
-
Provides consistent funding under different advocacy models, including training to support disability advocacy organisations to build their autism capacity in leadership and governance.
Autistic girls There is an ongoing failure to identify and diagnose autistic girls and women, and also to provide adequate service provision to support them.
Autism screening and diagnostic tools — such as the Autism Diagnostic Observation Schedule [ADOS] and the Autism Diagnostic Interview-Revised [ADI-R] — reflect a presentation more commonly found in boys and men than women and girls, and may lack the sensitivity and specificity required to identify autistic characteristics in women and girls. The estimated ratio of autistic boys and men to autistic girls and women is currently 3:1, however experts agree this may be an underestimate due to the systemic issues with presentation and diagnosis.
Girls are, on average, being diagnosed later than boys — often requiring numerous assessments — and are often not diagnosed until adolescence or adulthood, meaning they miss out on critical early intervention to enable them to participate socially and economically to their full potential. Many autistic women and girls are not receiving funding or appropriately tailored supports or services. Many intervention programs/approaches are designed with the stereotypically male characteristics of autism in mind. Also, employers often don’t recognise the strengths of autistic women or know how to support their needs.
Recommendation 38 — Fund research into screening and diagnostic tools to better identify autism in girls and women.
Recommendation 39 — That the Select Committee to inquire whether autistic girls and women are being provided adequate services and supports to meet their needs, and to make recommendations to improve services.
Autism and transgender community There is emerging evidence that autistic people are represented in greater numbers in asexual and
transgender communities, compared with the general population. The needs of this cohort need to
be better understood and met.
Recommendation 40 — That the Select Committee hold a series of roundtables with autistic people from the LBGTQIA+ community to understand how governments can best support them and meet their service needs.
25|Page
Recommendation 41 — Fund research into the autistic LBGTQIA+ community to understand this cohorts needs
Recommendation 42 — Government to provide funding to support community groups that serve autistic LBGTQIA+
Accessibility in the built environment
The Australian Autism Alliance 2019 Federal Election Manifesto highlighted that Australian research
found that 67.8 per cent of autistic people avoid community spaces due to the level of light or noise. The Manifesto also outlined the barriers that autistic people face from the built environment, including:
e Structure or physical features of the built environment: including lighting, acoustics, smells, colours, spatial features, flooring and other design elements. They may also include the way information is conveyed, for example a lack of non-verbal communication or signs.
¢ Cognitive and/or social differences: including a need for routine/predictability and sensory processing difficulties, such as delayed or single channel processing (i.e. may not be able to process all sensory input, such as hearing, seeing and feeling where their body is in space, simultaneously).
¢ Commonly co-occurring mental health conditions; in particular, anxiety can escalate in new/unknown environments or situations, or when an unexpected event or sudden change occurs in the environment.
The Amaze submission into the Australian Building Codes Board Accessible Housing Options Paper
said that consistent evidence is available regarding best practice in housing design for autistic people. Best practice recognises that the needs of autistic people when accessing housing can vary significantly and that it may be difficult to identify concrete minimum requirements for all housing.
However, the evidence does find that common measures to achieve accessibility for autistic people may include:
e Involving potential occupants (and/or family/carers) in the design process as early as possible;
e sound proofing, limiting external noise to a prescribed level indoors;
e neutral flooring and colouring; and
e lighting prescriptions, including no fluorescent lighting and mandatory dimmer switches.
It is recommended that the Livable Housing Design Guidelines undertake a review to consider
whether its current guidelines could better meet the needs of autistic people.
Recommendation 43 — That the Livable Housing Design Guidelines undertake a review to consider whether its current guidelines could better meet the needs of autistic people.
It is noted that the Commonwealth Government is currently considering the inclusion of minimum accessibility standards for housing in the National Construction Code (NCC). It has released its consultation RIS, which has a preliminary recommendation that the costs associated with including
an accessible housing standard in the NCC are estimated to outweigh the benefits. The NCC is
26|Page
currently seeking feedback on the assumptions, methods and suitability of alternatives. It is disappointing that this is the preliminary assessment, given the potential accessibility benefits for all Australians with a disability.
27|Page
Appendix
Copy of the complaint to the NDIS (sent 14 June 2018 to the NDIS)
Hello NDIS complaints team,
We would like to make a complaint about the NDIS process for our son, a who has had his ECEI NDIS plan recently approved due to his diagnosis of Autism. We live in the Northern
Melbourne region f Victoria).
The key complaints are:
- Timeliness: J initial intake assessment for the NDIS through the Brotherhood of St. Lawrence was on 31 August 2017, our planning meeting was on 9 May 2018 and we received confirmation of NDIS plan funding on 7 June 2018. This means that from our first intake meeting to confirmation of NDIS funding, around 280 days passed (over 3/4 of a full year). In this period we spent around
$12,000 on i therapy.
We have found this time process to be frustrating. We have heard of many stories of how quickly the NDIS process can take. A good example is someone whose child got a diagnosis of ASD in January 2018 (we believe in the Outer Eastern Melbourne region), applied for funding in February 2018 and funding begun in April 2018. We were encouraged by the Brotherhood of St Lawrence to make complaints to the NDIS before Christmas due to the delays. We were encouraged to call regularly and ask what was happening, we did this a few times and were given inconsistent information and also had blame-shifting between the NDIA and the Brotherhood of St Lawrence. We would like an explanation of why this process took so long for iii application, and why there a examples known to us, where families got their funding much faster.
- Transparency of process, including:
-
Little differentiation between intake meeting and planning meeting and the purpose of the ECEI plan - these meetings both included explaining where fj required support and the developmental issues he faced. The only differentiation between these meetings was that in the planning meeting we set broad, high level goals for i which could have been discussed at the initial intake meeting. We found no additional value whatsoever in having two separate meetings and we found the ECEI plan process to be devoid of any person-centred focus for i We request NDIS reconsider this process, perhaps providing intake and planning in the one meeting, given it generally covers the same issues.
-
No detailed information on the ECE! process and what is in scope or out of scope for funding: This makes it difficult to plan for relevant NDIS meetings and what information we need to provide. It also makes it difficult to understand why we were approved for a certain amount and why things
were not approved. | recommend that the NDIS website is updated to provide more detail around
what would be approved/not approved for ECEI plans. This will enable people with a disability and their families to come in with realistic expectations of what will be funded and what will not be funded and also enable them to plan for meetings by preparing the necessary documentation.
-
Person centred care - This was the part that we found most disappointing. The NDIS outlines that the focus is on providing person-centred care. However, in going through the process we quickly
28| Page
began to understand that this process was done to rit ‘in to a box’ for funding purposes. Essentially, it felt like a Centrelink process whereby they were trying to ascertain severity of condition for funding. This is not what we consider person centred care - it felt like a welfare process masquerading as person-centred care. There was no discussion about what specific supports we felt were required for i to meet our goals for him and we had no understanding of what supports would be accepted for funding to help guide us.
There is barely a personal bit of information about our son in his ECEI plan, the plan is just a checkbox of him having ASD and the amount of money that checkbox is allocated. All the evidence we had planned to supply, was rejected by our coordinator as it was deemed unnecessary, even though we have put around $12,000 into his therapy over the last 11 months. We have seen rapid improvements nim as have the therapists, and the NDIS apparently doesn’t care that all the
time we have put into i therapy.
-
Understanding what we allowed the spend the money - there is no information on what we are allowed to spend the NDIS plan funding on. Greater information would be appreciated to ensure we are spending it on things aligned with the NDIS ECEI.
-
Blame shifting between the NDIA and the Brotherhood of St Lawrence - We have provided a compliant about this issue prior, but feel it is important to emphasise. We had many discussions with staff from both organisations whilst waiting for our NDIS approval and most instances the organisation would ‘blame the other one’ for the lack of timeliness. This blame shifting wasted considerable time on our behalf talking to both organisations and also caused a lot of frustration. It was also difficult to ascertain whose responsibility it was for certain parts of the process and recommend that the NDIA ensure clarity of process with partnered organisations (and also with NDIA staff) so that concerned parents such as ourselves are not given the ring around.
-
Evidence informed - The NDIA funded the report Autism spectrum disorder: Evidence- based/evidence-informed good practice for supports provided to preschool children, their families and carers, which recommended that “Children who have received a diagnosis of autism should receive 20 hours per week of early intervention that involves interaction with them.” As parents of a child with Autism we know firsthand the benefits that intensive therapy can provide. However:
-
In waiting for NDIS approval, we have spent roughly $12,000 on therapy, which is more than the amount that we have been allocated.
-
We have not been doing 20 hours of therapy per week.
-
If we had therapy supports provided at the minimum wage ($18.93 per hour), this would equate to around 10.5 hours per week, half of the recommended amount.
This leads me to believe that the NDIS is not following this recommendation made by the report it
commissioned. | encourage the NDIS to provide clarity on how its process enables families to provide
20 hours of therapy per week. We note that it is even more difficult for i to achieve this because he is in school. However, we would pursue this as an end goal as we believe it is in his best interests.
-
Early intervention emphasis - We support the NDIS in seeking early intervention for children and know first-hand of the benefits it can provide a child. We only wish we got a diagnosis earlier to
29| Page
provide ii with therapy he required before he started school. However, due to the timeliness and lack of transparency, it makes it difficult to conceive how the NDIS supports early intervention - we want to invest now so he does not need supports later in life. Additionally, we recommend that the NDIA should utilise its power to encourage state and territory governments to ensure that there is a greater understanding within mainstream professions (GP, child care workers, MACH nurses, social workers) around early signs of autism to encourage a referral and to also maximise the period of assessment and diagnosis. In Victoria, a government inquiry into services of people with autism found that waiting lists of 12-18 months occurred for assessment and diagnosis. Noting that signs of autism generally present at around 2 years of age that means that there is not a lot of time to
provide the child with the necessary early intervention therapies before primary school. | further
recommend that the NDIA engage both levels of governments to ensure that timely access to diagnosis is provided. In our circumstances, we were lucky enough to be able to afford a private assessment for i but chose to seek it after discussions with well credentialed friends, not through mainstream service referral (where it was missed).
We are happy to have a further discussion about our complaint, either over the phone or face to face and look forward to your timely response.
Regards,
30| Page