Submission 52 — Australian Autism Alliance (52.1 Supplementary to submission 52) — Select Committee on Autism | External submission

Introductory overview

Senate Select Committee on Autism

July 2020

Full submission of the Australian Autism Alliance is forthcoming

This is the Alliance’s preliminary overview for the Senate Inquiry – there is more to come

This short preliminary submission seeks to: including a National Autism Strategy; access to diagnosis; NDIS reform; education & training and employment.

1.    Familiarise the Committee with the Australian Autism Alliance: our                                                                        The Alliance will make a comprehensive submission that covers these

reason for being, our work, our members, our reach. issues in more details as well as other key issues relevant to the Terms of Reference.

Situate the Inquiry in the current context of the coronavirus 4. Provide a glimpse of high level findings from an extensive pandemic.

consultation survey conducted by the Alliance to inform the Inquiry.

3.    Provide a snapshot of key issues and reform recommendations the          5.    Identify opportunities for further engagement and potential joint

Alliance will be making to the Inquiry, focussing on Terms of projects between the Alliance and the Committee to inform the Reference of the Inquiry and areas on which the Australian Inquiry’s work. Government and Parliament can initiate urgent action

The Australian Autism Alliance - ‘One Strong Voice for Autism’

The Australian Autism Alliance (the Alliance) was established in 2016 to The Australian Autism Alliance: create ‘one strong voice for autism.’

Reaches over 170,000 people through our Our purpose is to improve the life chances of autistic people and to communication channels facilitate collaboration within the autism community.
Employs over 3,000 staff The Alliance is a national network of 12 diverse autism organisations.
Employs, or provide pathways to employment,It brings together autistic led organisations, research bodies, advocacy groups and service providers. for over 350 autistic adults

Recent work of the Alliance includes: • Contributes to the Australian economy by

generating and delivering an estimated $200m • creation of a Federal Election Manifesto in 2019

of supports and services

advocating for establishment of the Disability Royal Commission
Builds capacity of the broader community
commissioning the largest and most comprehensive survey (outside through training and advisory services for over of the ABS) of autistic people and their families and carers in Australia to inform the Senate Inquiry into Autism 60,000 people per year

The survey was conducted by the Australian Catholic University • Covers nearly all of Australia

under the direction of Professor Sandra Jones, an autistic academic

•  Has significant national and international       with a panel of autistic consultants. Survey questions were mapped

against the Inquiry’s Terms of Reference. Over 3,800 responses linkages for advocacy, research and service were received delivery

Provides direct support to over 30,000 autistic people across the lifespan from early childhood to adulthood

Alliance partners come from around Australia

The Alliance seeks systemic change for a better future for autistic people

This Inquiry is taking place in unprecedented times

The Inquiry is a major and unique opportunity In an environment of high unemployment and underemployment, those The Senate Inquiry into Autism is the first national inquiry of its type. with existing labour market disadvantage will fare worst. Before the pandemic, autistic people had among the worst employment outcomes of It presents a once in a generation opportunity for comprehensive and any community in Australia. Autistic people are almost eight times more lasting reform for autistic people. likely to be unemployed than the general community. Senators have opted to participate in the Select Committee because of their commitment and passion. Autistic people are at high risk of being caught in the long But risks being overshadowed by the global pandemic tail of disadvantage following the coronavirus crisis. COVID-19 has profoundly impacted the lives of people across Australia. Without targeted and sustained measures, the pandemic and its aftermath risks sending the metrics on key lifeThe attention of policy and decision makers is necessarily consumed with outcomes for autistic people backwards.addressing the pandemic and its anticipated aftermath.

A real challenge will be ensuring the critical work of this Inquiry is not overshadowed by current circumstances. It is important that potential Australia needs to unleash underutilised potential to drive and sustain reforms to achieve improved outcomes for autistic people are not economic and social recovery. sidelined amidst the economic, social and budgetary challenges facing the There is high aspiration and huge untapped talent in the autistic nation. community. If harnessed, it will contribute to strengthening Australia’s Building the economic and social participation of autistic people is more recovery, productive capacity and community resilience. urgent than ever The policy choices made during this crisis and as we emerge out the other Autistic people have been hit hard by the pandemic. Many have side can deliver a better, more inclusive and sustainable future for our experienced disproportionate and adverse impacts: with their education, nation. employment, health and wellbeing, mental health and participation in community life suffering. This Inquiry has the opportunity to drive these choices and ensure post pandemic Australia enables autistic people to thrive.

There is a strong case for national action on autism

Autism is fast becoming the most prevalent disability in Australia Improved recognition of autism and the reclassification of Asperger’s Syndrome has contributed to a dramatic increase in people diagnosed with autism in Australia – 217% - over the last decade (far greater than for other disabilities). Despite this, it is likely to be much higher given the large numbers – particularly adults - who remain undiagnosed.

In 2018 the ABS reported there were 205,200 people in Australia with an autism diagnosis – a prevalence at 1.3% in males and 0.4% in females. For children aged between 5-14 years the prevalence rate is 3.2% (99,300 children).

It is likely that every Australian classroom has an autistic student. These children are our future. The actions taken now will dramatically impact their life trajectory.

Autism is the largest primary disability group in the NDIS (31%).

Autistic people have among the worse life outcomes In education, employment, mental health, life expectancy, social and community life – autistic people consistently have among the worst Policy responses to autism across Australia are overwhelmingly patchy and outcomes compared with other disability and vulnerable population haphazard groups. These outcomes are not primarily caused by the ‘disability’ itself, Australia lacks a coherent approach to addressing autism. Instead, the but rather a lack of effective support. policy and program landscape is piecemeal, and not mutually reinforcing. Evidence informed approaches and an enabling environment is needed.These dire outcomes come at a huge cost to autistic people, their families and the broader Australian community. They demand urgent and The recently released Victorian Autism Plan 2019 is the only dedicated dedicated action. autism plan in Australia.

A National Autism Strategy is long overdue

Australia needs a National Autism Strategy Comparison of outcomes across Australia’s different jurisdictions, and for A National Autism Strategy would drive an intentional and coherent key population groups including females, CALD and First Nations is crucial. approach to shifting the dial on outcomes for autistic people. It would Co-production with autistic people is critical provide an overarching frame to drive policy, service and program Reflecting the principle of “nothing about us without us,” a National responses across different domains and jurisdictions. Autism Strategy would need to be co-produced from end to end with A National Autism Strategy would create a shared vision with tangible autistic people and their families/carers. outcomes and actions in key priority areas across the life course including Inspiration can be drawn by the recent refresh of Closing the Gap which early learning; education and training; employment; community has seen processes and governance overhauled to embed the voice, participation; community attitudes; health and wellbeing. It would need to aspirations and experience of First Nations peoples. be regularly refreshed (3-5 year intervals) to reflect fast changing landscape. With the right policy settings and support, there is good reason While a strategy in and of itself is no silver bullet, analysis by Autism to be optimistic about the future for autistic people Europe highlights that countries with a national autism strategy appear to bring about a positive impact and change for autistic people, even if they do not achieve all their objectives. Key reform measures needed: It would strengthen Australia’s broader disability policy architecture Develop and fund a National Autism Strategy co-produced with autisticThe strategy ought be situated as a discrete part of the broader people: architecture of the National Disability Strategy and the National Disability

Agreement. This would incentivize and create an imperative for state and             Include targets and actions in key priority areas across the life course

territories to develop complementary autism plans. early learning; education and training; employment; community participation; community attitudes; health and wellbeing outcomes. And needs to include bold targets with measurable outcomes  Measure and report on outcomes, including for key population groups: A comprehensive outcomes framework is fundamental to a future National females, CALD and First Nations communities.

Autism Strategy. Progress against these outcomes would need to be                                                                                   Embed the Autism Strategy as a component of the National Disability

transparently monitored and reported on – most ideally through an annual Strategy, with complementary state and territory autism plans. report to Parliament. This would need to be informed by the collection of robust data on the outcomes of autistic people across the life course.

Barriers to assessment and diagnosis need to be urgently addressed

Diagnosis matters women is 3.5:1. Experts agree this is likely a significant underestimate due to the Diagnosis is crucial to accessing autism-specific early intervention in a timely systemic issues with presentation and diagnosis. manner. Misdiagnosis is a live issue Over half of autistic adults responding to our recent survey revealed they were Every moment counts for infants and children. Early diagnosis misdiagnosed with another condition before being diagnosed as autistic. 31.1% of yields significant return on investment; but delay in accessing parents/carers report the same experience. appropriate support significantly impacts life outcomes. The public system is log-jammed Many autistic people are receiving their autism diagnosis in adulthood. Our Those using the public assessment and diagnostic system face long wait times survey respondents revealed the following significant advantages of diagnosis, typically 1–2 years, with regional, rural and remote communities often waiting whatever time it is received: even longer. Over 27% of our survey respondents identified access to services as a barrier to diagnosis. Long wait times push many families into paying for private

  Allowed me to access supports                                                                                           diagnosis.

 Helped me understand myself

  Helped me understand my needs                                                    Fast tracking implementation of the National Guideline for the Assessment and

  Helped me deal with feelings of being different/inadequate                         Diagnosis of Autism Spectrum Disorder (a 2019 election commitment by the

  Helped me to explain my needs to others                                               Coalition) would drive significant efficiencies through consistent and evidence

  Helped me find ways to improve my life/situation                            based approaches to assessment and diagnosis across all systems, services

  Gave me the confidence to disclose my autism                             and jurisdictions.

But the costs of assessment and diagnosis can be prohibitive Key reform measures needed: Medicare rebates for autism assessment and diagnosis are only available for Extend Medicare rebates to cover the full costs of autism assessment andchildren under 13 years and only partially cover costs. The recommendation of diagnosis for children and adultsthe Medicare Benefits Schedule Review Taskforce to lift the age cap to 25 years has not been adopted as yet. Improve screening and diagnosis for women and girls

Two thirds of autistic adult and 36% of parents/carers identified cost (which can Reduce wait times for an autism assessment to three months post referral. range up to almost $3000) as a barrier to seeking diagnosis in the Alliance’s 2020 Wait times need to be monitored and reported on Autism Survey. The process of undertaking assessment becomes more complex with age, reflecting increased cost of diagnosing older children and adults. Improve efficiencies in assessment processes by implementing the National

Guideline for Assessment and Diagnosis of Autism Spectrum Disorder

Females are at high risk of being undiagnosed & misdiagnosed Current ABS figures reveal the ratio of autistic boys and men to autistic girls and 9

There is much room to improve the NDIS for autistic participants

The NDIS is game changing. However, rapid roll out has been accompanied by engage with the planning process and the NDIA. Just 31.6% of autistic adults significant implementation challenges. Current reforms processes (e.g. Participant and 35.8% of parents/carers felt they had enough information in advance to Service Guarantee, workforce strategy and thin market measures) are welcome. understand the planning process.

These need to be accompanied by specific reforms for autistic participants who             Inadequate plan funding and difficulty accessing supports: Just over one-third

are the biggest cohort in the scheme. of respondents with a current or pending NDIS plan reported that their NDIS funding is adequate. Two-thirds reported difficulty in accessing disability ECEI is not a good fit for autistic children support services after receiving NDIS funding.

There is significant concern that participation in ECEI can delay access to                   Significant barriers to accessing the Complex Needs Pathway, with very low

diagnosis. Further, the light touch approach used in ECEI can postpone autistic awareness that it exists children accessing the intensity of supports that evidence shows makes a real Outcomes for autistic participants are comparably poor difference to their trajectory. Providing autistic children with access to an Recent NDIA reports into participant and family/carer outcomes reveal poorer individually funded plan at the earliest opportunity will provide the best return on outcomes for autistic people compared with most other disability groups. While investment for the NDIS. there were improvements recorded in some domains, there was deterioration in Significant barriers remain to entering the scheme others. Repeated themes from our survey and engagement include:

   There is a lack of information and support to autistic people and their             Key reform measures needed:

families/carers to apply for the NDIS

  Concern that NDIA assessment tools are not fit for purpose and unfairly              Provide automatic access to the scheme for every child with an autism

diagnosis to enable early and intensive support screen out autistic people

   Lack of support for autistic people not admitted to the scheme. Over 80% of            Establish a specific NDIS autism and neurodevelopmental participant pathway

our survey respondents with unsuccessful NDIS applications reported not with dedicated training for all NDIA and partner staff in access and planning. being given information about other supports. Develop clear, transparent and accessible eligibility criteria for autistic people, The planning process is fraught for many autistic participants including a robust and reliable tool for determining their eligibility Key issues that undermine the development of appropriate and responsive plans Co-design tailored NDIS information to meet the needs of autistic people include:

  Low understanding of autism among planning staff. Just 18.1% of autistic            Expand investment in pre-planning support and peer networks, drawing on

adults and 31.8% of parents/carers reported that their planner had a good the successful Disability Support Organisations program understanding of autism in our recent survey.  Participants are not well-equipped to exercise choice and control. The overwhelming majority of respondents reported needing more support to

Education is key to life chances

The vast majority of jobs growth is in occupations that require post-            Inadequate support for behavioural and mental health challenges

school qualifications (either VET or higher education). Yet ABS data              Bullying, social exclusion and marginalisation

reveals too many autistic people are not attaining the education and                Inadequate transitional support – particularly for young people not

qualifications needed to support economic participation. eligible for the SLES program?  Limited vocational exploration and career mapping to inform theMany autistic people leave school very early Around one-third of autistic students only achieve Year 10 or below choices of autistic young people. (compared with 17% of students without disability). These very early Key reform measures needed: school leavers are at high risk of a lifetime of disadvantage. Develop targeted measures to increase participation of autistic Autistic people are under-represented in Vocation Education & children in early learning programs Training and in Higher Education Just 17.9% of autistic people have a Certificate III; diploma or advanced Roll-out a national program of professional development on autism for diploma as their highest qualification, compared with 29.4% of all all educators and education support staff people with disability. Increase accountability and transparency around how disability University completions are very low. Autistic people are half as likely to funding is used and the outcomes of students receiving it get a bachelor degree or higher (8.1%) as all people with disability Improve transitional support for young autistic people to explore and (16.1%). People with disability are four times more likely to attain a navigate vocational options university qualification. Incentivise programs and strategies by vocational and higher Autistic students face significant barriers to participating in education education providers to bridge the gap for autistic people in receiving and training post-school qualification Key issues include: Set targets for autistic people to take up opportunities – such as free  A culture of low expectations and damaging assumptions that TAFE and the new JobTrainer initiative nothing can be done  Low understanding of autism among educators and trainers  Low rates of adjustments for autistic student – including in VET and higher education settings

Lifting employment outcomes for autistic people must be a priority

Autistic people have much to offer diagnosis to their employer, less than one in ten reported that adjustments Autistic people aspire to work. There is strong evidence that autistic people can had been made to the sensory environment. bring great strengths and capabilities to the workforce, and make skilful, reliable Autistic people need to benefit from significant new opportunities and loyal employees. There is a business case for neuro-diverse workplaces. The NDIS Participants Employment Strategy ,public sector disability employment targets in some states (e.g. Victoria), and nationally (7% employment target forEmployment outcomes for autistic people are inexcusably poor people with disability across the Australian Public Service by 2025), and socialThe most recent ABS statistics on autistic employment (2018). Despite Australia’s procurement measures provide important new opportunities.strong economic growth at that time, unemployment was a whopping 34.1% (more than three times the rate for all people with disability and almost eight Given autistic people fare so poorly in employment vis-à-vis people with disability times the rate of people without disability). This will almost certainly be worse in more generally there is considerable risk that, without targeted measures, they the current environment. Labour force participation among autistic people was will be overlooked. While welcoming measures such as funding Specialisterne, just 38%, well short of all people with disability (53.4%) and less than half that of and the Dandelion Program such approaches need to be upscaled for impact. people without disability(84.1%). Under employment and underutilisation of skills is widespread (there is no direct data available on this). Key reform measures needed:

Poor employment outcomes negatively impact other areas of life Expand demonstration projects to showcase sustained employment of autistic Employment status has been shown to significantly impact mental health, people – including models providing parallel support to recruit and workplace wellbeing, economic security, social and community connections. The Include specific measures for autistic jobseekers within public sector employmentemployment status of parents can also impact the development and educational initiativesattainment of children.

Establish a federal social procurement framework requiring governmentAutistic people face a range of barriers to employment contractors to deliver training and employment opportunities for people with relatively low educational attainment rates

  employer perceptions about autistic people -                                                disability and a purchasing strategy that preferences social enterprises

  a lack of employment services tailored to the needs of autistic jobseekers                                                              A wide-ranging autism employment summit bringing key stakeholders together

(DES has poor results). But there are some promising small scale initiatives including employers; TAFE; autistic people; community organisations; researchers

   recruitment processes that effectively eliminate autistic candidates                                                                               and governments would help inform the work of the Inquiry.

 lack of flexibility in workplaces to make adjustments to support autistic employees. Of our autistic adult survey respondent who had disclosed their

Autistic people face stark health and mental health inequalities

Autistic people face poorer health outcomes Key reform measures needed: International evidence reveals autistic people have a life expectancy of 20-36 Improve the autism competency of healthcare professionals, with a particularyears shorter than the general population. focus on GPs, emergency staff and mental health practitioners A 2019 Australian study found autistic people are more than twice as likely to die Review international best practice to inform how to best support autistic before turning 75 as the general population. This is largely due to the high people within mainstream health services including reproductive health care incidence of mental health conditions. Introduce autism friendly universal design principles across hospitals and Autistic people also experience higher rates of suicide. A Swedish study found major health infrastructure. As a first step quiet rooms in hospitals could be that autistic adults (with no additional learning disability) are over 9 times more established. likely to commit suicide than the general population. Develop a dedicated plan on autism in mental health and embed it in Mental ill health impacts the majority of autistic people the next iteration of the National Mental Health & Suicide Plan Between 50-70% of autistic people experience co-existing mental health conditions. Anxiety and depressive disorders are the most prevalent, particularly We suggest that the Senate Autism Inquiry invite members of the among autistic females. Victorian Mental Health Royal Commission to brief them on findings and recommendations about mental health and autism when theirAlmost a third of respondents answering the mental health section of our recent final report is released.survey reported they had not been able to get appropriate support for their mental health condition/s. The most common barriers identified were cost; long the National Mental Health and Suicide Plan, National Health and Medical wait times; difficulty finding a mental health practitioner who understands Research Funding and funding agreements with mental health service providers. autism; and difficulty finding a mental health practitioner who understands their Accessing health care is challenging specific situation. Our recent survey results echo findings of the Victorian Autism Inquiry about the Correspondingly, some of the barriers mental health professionals encounter challenges autistic people may face when accessing mainstream health services include a lack of autism training; no easily available information and guidance for These include sensory sensitivities, communication difficulties, a lack of supporting autistic people with mental health conditions; and a problematic collaboration between services. mental health system. The Victorian Autism Inquiry found that autistic children and teenagers are 10 We anticipate the Victorian Mental Health Royal Commission (reporting in Feb times more likely to be admitted to hospital for medical illnesses and complaints,

will make findings and recommendations about the mental health of suggesting effective preventative and primary health care is not being accessed. autistic people. These will be instructive given significant federal levers including

We are committed to working hand in glove with the Inquiry

The Alliance is throwing significant effort behind supporting the Senate Inquiry into Autism Upcoming opportunities for collaboration

Survey deep dive: opportunity to sponsor reports on the key  Undertaken Australia’s largest and most comprehensive survey of themes explored in the Alliance’s 2020 Autism Survey.

autistic people and their families. Headline report on survey results - This could include analysis of the thousands of open

is forthcoming ended responses received (outside scope of work the

Alliance funded ACU to do).    Alliance members supporting autistic people to participate in the

Inquiry

Supporting a summit or roundtable on autism employment  Introductory overview submission prepared in partnership with the Alliance and Autism CRC (who

convene annual autism employment forms) to identify  Initial presentation by the Alliance to the Inquiry on 28 July 2020

tangible opportunities for action. This could be staged in  Comprehensive submission from the Alliance forthcoming early 2021 to inform the Inquiry’s work.

 Further materials will be provided to the Committee throughout

Jointly considering the upcoming findings and the life of this Inquiry recommendations of the Victorian Mental Health Royal

 Opportunities for the Inquiry to undertake joint work with the Commission

Alliance

 Alliance partners offering to host visits to inform the Inquiry’s work