6.1
This chapter describes general concerns raised by participants about the overall adequacy and availability of services and supports for autistic people in Australia, including through the National Disability Insurance Scheme (NDIS). It also provides an overview of the barriers to adequate service provision that are common to many—if not all—service sectors. In addition, it also includes discussion of stakeholder concerns in relation to gaps in support for social inclusion.
6.2
This chapter does not canvas issues that are specific to individual service areas such as diagnosis, early intervention (including the NDIS Early Childhood Approach), education and employment. Nor does it identify the additional challenges faced by particular cohorts of autistic people in relation to adequate supports. These issues are addressed in subsequent chapters.
Support for autistic Australians
6.3
The social and economic costs of failing to support autistic people and their families were described in Chapters 3 and 4. However, as one autistic participant described, providing adequate support for autistic people is 'not only about reducing our suffering but about gleaning the unique potential that our differences enable'. This point was also made by the Northern Territory Office of the Public Guardian which highlighted the wasted potential arising from a lack of adequate support.
6.4
However, Mr Paul Micallef, Co-chair of the Australian Autism Alliance, cautioned that even successful outcomes for autistic people can come at a significant cost if not supported adequately:
A typical story is that even outward success comes at a huge internal price and, sooner or later, we just can't do it anymore. The mask breaks, resulting in problematic behaviour—to say the least. That's what it looks like on the outside. There's severe burnout and mental breakdown, and it can end jobs, destroy marriages and alienate friends and family.
6.5
Support for autistic people in Australia can be provided through a sometimes complex mix of disability supports funded by the NDIS, non NDIS-funded mainstream and community services and supports, as well as informal supports provided by families, carers, and friends.
6.6
The majority of funded support for autistic people is provided through the NDIS (see Box 6.1). The most recent quarterly report indicated that the NDIS is supporting over 144 000 active autism participants, representing approximately 32 per cent of all active plans. For autistic NDIS participants, evidence suggests that the amount of committed funding increases with age and it has been estimated that the lifetime support costs for an autistic person is $6.7 million per NDIS participant to age 70 years.
6.7
The under representation of females is also reflected in NDIS plans for autistic people. 105 925 of the 144 154 active participants in the scheme with autism are male and 36 197 are female. This represents a male to female ratio of just under 3:1 for active participants in the NDIS with autism.
Box 6.1: National Disability Insurance Scheme
The NDIS was established in 2013 through the National Disability Insurance Scheme Act 2013. It represents a social insurance model of care for eligible Australians with a disability and is managed by the National Disability Insurance Agency (NDIA).
The NDIS provides eligible individuals with a permanent and significant disability access to the reasonable and necessary supports they need 'to achieve their goals and aspirations'. The decision on what supports or therapies are deemed reasonable and necessary for an individual with autism depends on the supports and services already available to the participant. The NDIS is not intended to replace all the services and supports provided elsewhere by governments or the community. Of the estimated 4.4 million Australians with a disability, around 500 000 receive individualised supports under the scheme.
From 1 July 2020, the NDIS became available nationally. As part of this, Commonwealth disability programs have been transitioning funds and clients to the NDIS, including the individualised components of the Helping Children with Autism (HCWA) program.
6.8
Informal care also plays a significant role in supporting autistic individuals. For example, according to the Australian Bureau of Statistics (ABS), the majority of care in the core areas of self-care, mobility and communication is provided by informal carers.
Concerns raised by stakeholders
6.9
There was almost universal stakeholder concern about the adequacy of current services and supports for autistic people, including high levels of unmet demand, as well as service gaps and inadequacies.
6.10
In terms of unmet demand, the ABS found that many autistic people were not receiving either some or all of the assistance they needed, with over half indicating they needed more help with at least one activity. According to the ABS, the unmet need for assistance was greatest for cognitive and emotional support (40.8 per cent), household chores (36.8 per cent), communication (34.3 percent) and transport (30.3 per cent).
6.11
Similarly, a survey by La Trobe University's Olga Tennison Autism Research Centre (OTARC) identified 'significant problems with accessibility and adequacy of services'. This included:
difficulty locating available services, particularly after high school;
lack of curriculum adaptation to cater for individual needs of autistic students in education settings;
lack of support to acquire employability and upskilling;
lack of practical supports and accommodations at university;
lack of supports in fostering decision making, living skills and self‑advocacy;
difficulty navigating the system if you do not fit typical categories of support; and
a lack of post diagnosis supports.
6.12
Many stakeholders also observed the compounding nature of inadequate service provision and noted that failures in one sector, particularly early in life, were likely to increase the need for services in other sectors.
6.13
While the cost of services was also a concern, this related primarily to specific services areas (such as the cost of diagnosis), as well as the cost of services for people without a diagnosis, or people who do not qualify for support under the NDIS. Accordingly, the primary discussion of costs appears in those chapters dealing with relevant service sectors.
Specific concerns about the NDIS raised by stakeholders
6.14
Stakeholder support for the operation of and services provided to autistic participants by the NDIS was mixed.
6.15
While some autistic participants and their carers have benefited from being able to access the NDIS, a number were critical of the lack of general understanding about autism within the NDIA and the absence of tailored supports to assist autistic people access, navigate and benefit from NDIS funding. For example, the AEIOU Foundation (AEIOU), one of Australia's largest providers of autism-specific early intervention, outlined their concerns about a lack of understanding:
AEIOU believes there is a lack of understanding at agency level regarding autism and evidence-based treatments for children up to six years, perhaps viewing it as a more transient condition rather than a permanent disability which warrants long-term investment. The alternative is there is a lack of understanding about what can be achieved for these children via quality, evidence-based intervention and both the personal and cost benefit over the course of an individual's lifespan.
6.16
General concerns were also raised by participants and their carers as to whether the NDIS was meeting the principles in the Participant Service Charter (see Box 6.2). For example, Dr Nancy Sadka, an autism researcher and parent to two autistic boys, shared her experience which as well as appearing exhausting also did not seem to be transparent, responsive, respectful, empowering or connected:
…navigating the NDIS is a long and challenging process. It took me a year to prepare for our support planning meeting to ensure adequate funding. I accounted for every hour of every day, 365 days, 8,760 hours, and it did not stop there. Receiving an adequate plan is only the first step, trying to implement the plan is another matter. I fight with providers who are lacking in knowledge on how to operate under the NDIS. I recruit support staff, provide monthly rosters for support staff, check signatures against hours provided, document and lodge them weekly, approve invoices against line items, keep an expense ledger, budget funding so it will last for the duration of his plan, keep up with NDIS changes, and get ready for the next year's plan review. So if you think that the NDIS is all about funding the individual, think again. It is my second full time job.
6.17
Similarly, a family contribution to the SDN Children's Services' submission also appeared inconsistent with the expectations arising from the Participant Services Charter:
NDIS' insistence they will only fund 'disability specific' programs means our kids miss therapeutic opportunities that would also help them build social connections in the community. Any attempt to raise issues with the NDIS makes us feel voiceless and powerless. If the aim was to design a system to isolate families with disabilities, undermine their mental health and disempower them the NDIS is doing a bang-up job.
Box 6.2: The NDIS Participant Service Charter
The Participant Service Charter sets out what participants can expect from the NDIA and the Partners in the Community Organisations.
The Participant Service Charter is based on five principles for our engagement with participants:
Transparent – easy to access and understand information and decisions
Responsive – respond to individual needs and circumstances
Respectful – recognise your individual experience and acknowledge you are an expert in your own life
Empowering – easy to access information and be supported by the NDIS to lead your life
Connected – support you to access the services and supports you need.
6.18
Stakeholders (both individuals and organisations) who submitted to the inquiry also identified specific concerns relating to the support provided by the NDIS to autistic individuals. These concerns can be broadly categorised as:
lack of information and support to autistic individuals and/or their families when applying and navigating the NDIS;
lack of knowledge regarding autism and best practice among NDIS planners who are the main contacts for families with children with autism;
inadequate plan funding and trouble accessing services once plans are received.
Lack of information and support when applying and navigating the NDIS
6.19
The committee heard concerns around the lack of information and support to autistic individuals when applying and navigating the NDIS. This was particularly an issue for families having to navigate multiple service sectors to address the specific needs of their children.
6.20
For example, Children and Young People with Disability Australia (CYDA) observed that 'families of children and young with disability often encounter challenges with eligibility criteria and difficulty obtaining medical diagnostic reports and assessments'. It argued that:
This leads to significant costs and stress to families, and means there is inequitable access for children living in families experiencing poverty or hardship. Many find it hard to access to the Scheme without support or advocacy services. Families are also concerned their child only receives support for what is considered the 'primary disability' rather than support for their full spectrum of needs.
6.21
CYDA also noted that:
Information about accessing the Scheme, and throughout the planning and implementation processes is often confusing. Families are unclear on what the Scheme can and cannot fund and are not supported to access services and supports outside the NDIS when these are not included in the NDIS plan. The interface issue with the NDIS and other systems such as health and education need to be urgently resolved by the NDIA and state and territory governments.
6.22
Another submitter, who did not wish to be identified, argued that the NDIS should engage with autistic people and their families openly about seeking options to reduce potential cost blowouts, should they exist, rather than give the perception it is trying to limit or take away access to services.
6.23
In addition, AEIOU argued that 'the current system relies heavily on parents understanding what services are available before they get to see their planner, what evidence-based practices are, and how to advocate for them, all at a time that is often guided by stress and grief'.
6.24
Another submitter suggested that the NDIS should assist by publishing 'transparent guides to NDIS planning for carers of people with Autism that identifies what sort of goals will be supported and what types of therapy and other support will be funded'.
6.25
The Queensland Government voiced concerns about delays in children being able to access Early Childhood Early Intervention (ECEI) services and contended that the NDIS does not recognise delegated decision making by more than one individual and does not recognise entities or individuals acting in their professional capacity under child protection legislation.
6.26
Stakeholders also raised concerns in relation to the NDIS website. For example, one submitter noted:
…if you are self managed but like me for physiotherapy want to use a Registered NDIS Service Provider you can't do it via the NDIS website you still have to put a Private Service Agreement in place and book your appointments privately and pay up front then claim back instead of being able to do it via the NDIS website. Some Registered NDIS Service Providers won't take self managed clients because their systems for managing NDIS clients is done totally through the NDIS website and self managed NDIS is not accessible to them for booking/billing.
6.27
The Coalition of Autistic Women also highlighted the 'difficulties in navigating the NDIS website by participants, particularly for those participants with limited reading or comprehension skills'.
6.28
Marymead Autism Centre reported that its clients experienced confusion and feelings of being overwhelmed when accessing and navigating the complex system and contended that a lack of information figures strongly in the reasons given by people not applying for the NDIS.
A lack of knowledge regarding autism and best practice among planners
6.29
Many stakeholders expressed concerns around a lack of knowledge regarding autism among NDIS planners who are the main contacts for families with autistic children.
6.30
Autism Awareness Australia advised that the families it interacts with often report that NDIS planners have a 'poor understanding' of autism. It explained:
Given the wide spectrum and multiple presentations of ASD, this is not surprising, but it does raise significant issues. Understanding suitable interventions and supports for different children with varied presentations of autism are critical.
6.31
Similarly, The Autistic Realm Australia (TARA) advised that:
Many NDIS planners do not appear to have training in Autism and how it manifests in both children and adults, and as a result make decisions for our plans that are inappropriate and contrary to the recommendations of our medical professionals.
6.32
Issues with planners were identified early in the NDIS rollout and appear to persist today. For example, the Australian Medical Association (AMA) noted that concerns were flagged about the capacity for providing appropriate and timely support to those with autism in the early phases of the NDIS. It observed that concerns remain, particularly around the wide variation of support packages provided to people with autism:
While it is true that support needs [for individuals with ASD] can differ, there continues to be anecdotal stories of people with similar support needs receiving vastly different packages of support. There may be a range of factors contributing to this disparity but improving the NDIS Planners understanding of Autism Spectrum Disorder is one aspect that may improve the situation.
6.33
Similarly, the Royal Australasian College of Physicians (RACP) observed:
The experience, expertise and qualifications of NDIS staff can vary greatly. Some RACP Fellows report that the level of understanding of a client's impairments tends to vary greatly which can lead to different funding levels for similar clients, both in terms of core supports and capacity building supports. Planners have also been reported to act independently in deciding which requests will be funded and often do not necessarily accept the recommendations of experienced clinicians.
6.34
The Tasmanian Government also shared these concerns:
NDIS planners do not always have the skills, knowledge, and understanding to effectively support people with autism. This can result in the development of plans deficient in the types of and level of supports needed. Introduction of draft plans may assist in supporting NDIS planners and participants to develop appropriate plans.
6.35
In addition, the Northern Territory Office of the Public Guardian noted that 'planners are not always able to understand the complexities of a participant's disability and therefore the required level of supports is not incorporated in the participant's plan'. It went on to argue that:
The growth of the human services support industry in the Northern Territory is dependent upon NDIS planners having an understanding of both the supports that are currently available as well as what supports could be provided to the participant. This is particularly relevant to NDIS plans for people with autism where the growth of specialist and holistic services is essential to meet the needs of this group.
6.36
A submitter, who did not wish to be identified, argued that the knowledge of autism within the NDIA and its contracted client management firms as it relates to 'teens, young adults and adults especially females is somewhere between little and totally non-existent'.
6.37
Carers Australia also commented on eligibility barriers and argued that the eligibility of participants with mild to moderate disability can be difficult to establish due to the absence of sound and fair judgements as to need by planners. Moreover, the review process to challenge decisions is often time consuming and complex.
6.38
Given these concerns, the South Australian Commissioner for Children and Young People recommended that:
Given that one third of NDIS participants are people with autism, autism-specific training should be prioritised and provided for NDIS planners and all individuals and services that interface with the NDIS.
6.39
Several stakeholders raised concerns regarding the lack of understanding on best practice and evidence-based treatments for people with autism. For example, CYDA noted concerns from families that 'NDIS plans consider children and young people in isolation from their families despite extensive research which shows the development and wellbeing of children and young people is facilitated through supportive home learning and support environments'. It argued:
Families can be denied support and services as these are considered to be 'parental responsibility', and there is a push to medicalise the supports in the plan rather than consider the natural environments and supports in the community which promote the wellbeing and development of children and young people.
6.40
Autism Aspergers Advocacy Australia (A4) noted that 'few autistic children in Australia are diagnosed in time to access good or best practice early intervention before the NDIS's premature cut-off at school entry of age 7 years'. It observed:
Since the NDIS caused the demise of the national Autism Advisor Scheme that was part of the Helping Children with Autism package, few parents are informed about good practice for autistic children so they are unable to make an informed choice for their autistic child. And the NDIS often resists requests for evidence-based supports for young autistic children: families may have to take their service request to the Administrative Appeals Tribunal to get their child's needs met.
6.41
Stakeholders also reported the need to improve the participation of people with autism in the NDIS planning process. For example, the Northern Territory Office of the Public Guardian argued:
…the planning process does not always draw optimal outcomes because of the general nature and structure of the meetings. In addition to this, the assessment tools that are used are not meaningful in all situations but particularly for people with autism, nor is the process coming from a strengths approach. Instead, participants are asked to justify their deficits to enable funding to be allocated, which is very difficult for participants, family and carers and support providers. Inappropriately worded questions can exacerbate the existing discomfort of a participant who is not comfortable talking to a stranger about personal matters leading to critical information not being disclosed and basic supports not being included in plans.
6.42
Likewise, a submitter who did not wish to be identified, noted:
Planners have varying levels of autism understanding, and their personal perspectives on the types of support required and the way they view autism generally may be at odds with the autistic person and their family or carers. The submission of plans is not transparent, and the effort put into providing evidence of supports needed is overridden by the planner/or someone else who approves the plan. The review process is confusing and takes far too much time.
6.43
Another submitted suggested that, given the special nature of autism, a dedicated autism stream be developed within the NDIS to provide for more timely, specialised and appropriate diagnosis and provision of services.
Difficulty accessing services and inadequate funding
6.44
Once plans and funding have been finalised, stakeholders commented on the difficulty they then had accessing services and highlighted that funding was often not sufficient to provide the services and supports required.
6.45
At least one submitter suggested that a lack of support coordination is a contributing factor to the underutilisation of plans and is one reason the full benefits of the NDIS are not being realised. According to CYDA, 'many families are not aware how to start using the funds once the plan is approved, where to find support workers and what to ask providers to compare services'. This was reflected in the experience of one mother, who described a lack of support coordination as a major impediment to getting the most out of her children's funded supports.
6.46
The NDIA acknowledged the difficulties autistic people experience in trying to interact with the multiple agencies and service sectors involved in their support. It also indicated that support coordination is currently provided through:
Local Area Coordinators (LACs), who provide information about, and referrals to, mainstream services for both NDIS participants and non-participants; and
support coordination, which can be funded and may comprise:
support connection (to build an individual's ability to connect with informal, community and funded supports);
support coordination (to build the skills needed to understand, implement and use an NDIS plan); and
specialist support coordination (for people with complex situations who need help managing challenges in the support environment).
6.47
In addition, the NDIA highlighted that it now has dedicated Health Liaison Officers and Justice Liaison Officers, who can support people who are 'moving into and out of these state systems'.
6.48
However, the committee heard mixed views about the availability and quality of the NDIS support coordination. For example, one mother described the lack of support provided by her LAC while she struggled to make use of her children's plans:
I was expected to coordinate the supports of my children, despite not being qualified to identify what supports were needed, or to identify what supports were available. I had no hope of putting those two things together and making good use of their funding. None. And the LAC let it ride for three years - three plan reviews, and would have let it go for another, and probably indefinitely. And every time I asked for help in locating a suitable support service, she'd handball the task back to me, essentially telling me to Google. Or Googling and sending me the first page of results as an email. Or a list of phone numbers to call, none of which were for organisations that provided the support or service I needed. And she refused to ask for a specific support in my daughter's plan Three Times, because she said that the NDIS didn't provide that kind of support, despite it being a line item in the price guide…
6.49
The mother went on to describe how her experience was turned around by a support coordinator who recognised that she was unable to cope and volunteered to advocate for her. With this support, the mother was able to access 'the help and support we should have had all along in dealing with the NDIS'.
6.50
As a result, the committee heard calls for support coordination funding to be increased, particularly for disadvantaged and vulnerable cohorts. There were also calls for support coordination to be a 'default' inclusion for NDIS plans.
6.51
Other stakeholders expressed frustration at NDIS policies that led to inadequate plan funding. For example, one family outlined how difficulty accessing services in one year had led to inadequate funding the following year when services were available:
We were unable to get a psychologist for the 12 months and NDIS reduced our funding down as we hadn't been able to use the services. The next year when we were able to get a psychologist, but we are limited to how many sessions we can have as we don't have enough funding now.
6.52
Other participants and providers indicated that plan funding is often inadequate to access the supports needed. Indeed, responses to the Australian Autism Alliance (the Autism Alliance) survey indicated that:
Just over one-third of respondents with a current or pending NDIS plan report that their NDIS funding is inadequate.
6.53
Submitters also raised concerns with plan funding allocation, noting that families and carers are allocated funding for specific purposes but may find they do not have access to the provider or service specified. For example, one submitter was told they were unable to use plan funding for a teacher's aide if their state education department would not fund the support.
Common barriers to the provision of adequate services and supports
6.54
Consistent with the issues raised in the previous section, stakeholders noted that the barriers to adequate service provision are interconnected and cut across multiple service sectors. Overall, some of the issues most commonly identified were:
the lack of integration across service sectors and between levels of government, including the intersection of NDIS and mainstream supports; and poor service coordination support;
poor understanding of autism in both community and professional settings;
inappropriate service provision;
Lack of service integration
6.55
Responsibility for ensuring people with autism are included in the community and are able to access the services they need is shared between all Australian governments, the non-government sector, businesses and the wider community. The Autism Alliance claimed this had contributed to a piecemeal policy and program delivery landscape, with 'small, disconnected and fragmented initiatives' delivered through a multitude of systems across different levels of government.
6.56
According to CliniKids, the disconnect is apparent within and across different levels of government, between various service sectors, and across NDIS-funded and mainstream services (including privately provided services and those in the community and not for profit sectors). According to some stakeholders, this had led to both gaps in, and duplication of, services for autistic people. Overall, the Northern Territory Office of the Public Guardian observed that:
…none of the service sectors provide either a comprehensive service to address the needs of people with autism or provide a seamless transition between service sectors. It appears difficult for service sectors to accommodate the range of complex needs that exist across the autism spectrum…
6.57
The complexity of this approach was described as 'failing' autistic people and Marymead Autism Centre reported that members of the autism community felt confused and overwhelmed by 'the complex and multi-jurisdictional system, including NDIS, health, education, justice, housing and employment'.
6.58
Stakeholders also expressed frustration at having to deal with multiple agencies. For example, one autistic submitter described interacting with the current system as a 'referral-go-round', where they were referred from one organisation to another multiple times, only to end up back where they started. In addition to affecting the quality of service provision, this also creates unnecessary stress and increases the psychological and emotional burden on people seeking support:
Because phone calls are very hard and draining for me, I may find that I have spent weeks of mental energy on a circular exploration in which every organisation has ended the call satisfied that they have genuinely helped me to address my problem—a job well done—but my problem has not even remotely been addressed. It’s kind of mind-bending when you’re having problems with anxiety, depression, or both.
6.59
The committee heard that service segregation had even created 'rail gauge' issues for autistic people and their families when they move interstate—or even between services within the same state. CliniKids observed that it was 'not uncommon' for service sectors in one state not to recognise an autism diagnosis from another state, or for the education system to require an assessment for a child, despite that child already having a diagnosis from the health system in the same state.
6.60
For some stakeholders, it appeared that this service segregation was viewed as a consequence of the move to a market-based service provision model, where, in the absence of willing providers, governments no longer own the duty of care for providing services to people with disability. However, others suggested it was the breadth of services required by autistic people and the dispersal of responsibility for those services that allowed people to fall through the cracks:
…autism has sat in the Venn diagram of health, disability and education for too long at the state and federal levels. There are six departments, at bare minimum, that deal with us. You would think that means we get six levels of concentration and effort, but it doesn't; it's quite different. We fall in the middle of those things.
6.61
As some participants noted, a specialised and segregated service environment works against the ability of providers to meet intersectional service needs and provide the holistic 'wraparound' services required by autistic people and their families. For example, the Scope-University of Melbourne Partnership stated that women with disability who experience domestic violence are often underserved—caught at the intersection of disability services which do not provide adequate support and mainstream domestic violence services that are inaccessible to them. Likewise, there appears to be significant unmet demand for wraparound services, with Mansfield Autism Statewide Services—one of the few organisations that offers such services—having described itself as 'bursting at the seams'.
6.62
Multiple submitters stated that the impact of service fragmentation was magnified for vulnerable and disadvantaged cohorts such as First Nations people, non-heterosexual and gender diverse people, and culturally and linguistically diverse communities, as well as people in remote areas, those in the child protection and justice systems, and those with multiple and complex needs.
Intersection between the NDIS and mainstream supports
6.63
According to the NDIA, NDIS supports are designed to:
…work in concert with, but not replace, existing services that are offered to participants, such as those provided by educational institutions, public or private hospitals, or correctional facilities.
6.64
However, the intersection between the NDIS and mainstream supports was singled out by stakeholders as particularly problematic, despite some having reported positive experiences with the NDIS since its introduction. As described by one witness:
…we are seeing vulnerable people falling through the cracks, because it doesn't fit under education, it doesn't fit under the NDIS, and it doesn't fit under health. Where does it go?
6.65
It was also suggested that the NDIS may have escalated service segregation and specialisation. For example, the Samaritans argued that as a result of including early intervention in NDIS plans, many early intervention services have become providers of a 'therapy type', rather than services that look more holistically at children's needs.
6.66
According to Speech Pathology Australia (SPA), the 'hard line' between the NDIS and other services means that autistic people are 'often caught in the middle of debates between the disability and health sectors regarding who should provide funding for the wrap-around or integrative services, or for transition to home'.
6.67
In response, the Department of Social Services, Department of Education, Skills and Employment and Department of Health (the departments) pointed to ongoing work to 'clarify the interface between the NDIS and funding and delivery responsibilities across a number of key service systems'. According to the departments, this builds on the Applied Principles to Determine the Responsibilities of the NDIS and other Service Systems (the APTOS Principles), which were agreed in 2015.
6.68
The departments also noted that, while NDIS participants could access support from both mainstream and disability services concurrently, 'they will not be able to access the same funded services under more than one program at the same time'. The NDIA also stressed that simply because a service was not funded by a particular sector (e.g. the health system), that 'does not make the provision of such a support the responsibility of the NDIS'. Instead, the NDIA emphasised that its decisions were guided by Schedule 1 of the National Disability Insurance Scheme (Supports for Participants) Rules 2013 (see Box 6.3), which is derived from the APTOS Principles.
Box 6.3: Schedule 1 of the National Disability Insurance Scheme (Supports for Participants) Rules 2013
The National Disability Insurance Scheme (Supports for Participants) Rules 2013 (the Rules) guides the assessment and determination of the reasonable and necessary supports that will be funded for participants under the NDIS.
Schedule 1 to the Rules sets out the considerations that must be taken into account in deciding whether a support is more appropriately funded by the NDIS or another service system (for example, as part of a universal services obligation or in accordance with reasonable adjustments required by law).
Considerations are described in relation to the interaction of the NDIS with the following service systems:
health (excluding mental health);
early childhood development;
child protection and family support;
higher education and vocational education and training;
housing and community infrastructure;
Source: Schedule 1, National Disability Insurance Scheme (Supports for Participants) Rules 2013.
6.69
However, some stakeholders raised doubts about how well the APTOS Principles were being applied, as well as the transparency of the process to resolve interface issues. For example, the Office of the Public Advocate Victoria called for governments to abide by the APTOS Principles, while Children and Young People with Disability claimed there was 'little publicly available information' about progress in clarifying the interface between the NDIS and mainstream supports.
6.70
There were also concerns that the NDIS had allowed state, territory and local governments to reduce the level of service they provide. While the departments noted that some state and territory service provision was absorbed into the NDIS by design, there was a view that, following the introduction of the NDIS, many important supports—such as advice, respite, sibling and parent programs—ceased to exist as they were no longer funded. Similarly, A4 claimed that state and territory governments had 'abandoned as much of their support for autistic people as they could', with the expectation that the NDIS would fill the gap.
6.71
Unsurprisingly, the committee heard multiple pleas for greater clarity, coordination and integration of services in order to provide a holistic approach to providing support for autistic people and their families. Many stakeholders also highlighted the role a National Autism Strategy could play in guiding better service coordination and integration between jurisdictions and across service sectors, including where NDIS and mainstream services intersect. For example, a number of stakeholders spoke of the potential for a National Autism Strategy to connect specific sectors, such as health, education, community services and justice, while others highlighted the potential for a National Autism Strategy to generate consistent guidelines and service standards, and address inconsistencies in how services for autistic people are funded.
Support coordination
6.72
More than one stakeholder described trying to access services for their children as a 'fight' or a 'battle'. According to Speech Pathology Australia, the outcome of this fight varies according to who is 'more willing, or able, to fight harder or for longer'. This view was shared by one parent of an autistic child who argued that access to adequate services was inequitable and dependent on the 'resourcefulness of parents/carers'.
6.73
A lack of support coordination assistance was seen to exacerbate this situation. For example, one parent described the 'constant issue' of trying to decipher 'which department or support system is responsible for supports for my son, between the NDIS, the Department of Education, Medicare and the public health system'.
6.74
For autistic individuals themselves, the characteristics of autism itself—including executive functioning difficulties—can make navigating and coordinating the disconnected service environment even more challenging.
Understanding of autism
6.75
Poor understanding of autism was a common theme that emerged from the evidence presented to the committee. This lack of understanding, as well as misconceptions about autism and stereotypical views of autistic people, were also cited as barriers to the inclusion of autistic people within the community.
6.76
Even more worryingly, a lack of understanding of autism also extends to various professionals—including general practitioners, paediatricians, psychiatrists, early childhood educators and school teachers—who are often the first point of contact for autistic people and their families. The Australian Association of Social Workers described the impact this has on autistic people:
Our members highlight a concerning lack of understanding held by … professionals that contribute to a concerning lack of consistency in supports. … This lack of widely available consistent, relevant and accurate information means that these important (in gate-keeping roles) and highly influential professionals can compromise and impede therapeutic supports, and capacity to access appropriate community resources in a timely manner, that further reduces best practice and optimal outcomes.
6.77
As a result, multiple submissions recommended that a public education campaign be undertaken to promote community understanding of autism, employment of autistic people, and inclusion of autistic people in a broad range of settings. A number of submissions also suggested that this should complement, or be a central component of, a National Autism Strategy.
6.78
The committee heard that a coordinated focus on autism driven by a National Autism Strategy would help build the capacity of the community to recognise and respond to the needs of autistic individuals—rather than having the adjustment burden rest solely with autistic people themselves. Ms Jenny Karavolos, the Chief Executive Officer of Autism SA, explained:
Understanding and education are critical. …because that's the capacity building of all the interfaces of society. The world isn't built for people with autism, but it can be adjusted. With some small tweaks, I think we can make great gains.
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Some stakeholders cited the Amaze Change Your Reactions public education campaign as an example for future campaigns. According to Amaze, the campaign was very successful:
For neurotypical viewers, 90 per cent felt concerned about how autistic people were treated; 85 per cent intended to refrain from being judgmental; and 81 per cent were made to stop and think. Importantly, of those who saw the campaign, 68 per cent reported having a better understanding of autism.
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Calls for greater understanding also extended to the need for better education and training for professionals involved in supporting autistic people in all service settings, including healthcare, education, disability support as well as first responders, such as police and paramedics.
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The Commissioner for Children and Young People South Australia (SA Commissioner) suggested that an autism-specific training framework be developed as part of a National Autism Strategy with the aim of equipping all workers with the 'skills to support the varied and complex communication, social interaction, sensory regulation and cognitive needs of autistic people'. The SA Commissioner also called for training to be prioritised for NDIS planners, as well as individuals and services that interact with the NDIS. This was in response to the Autism Alliance finding that 65 per cent of autistic NDIS participants (or their carers) 'rated their planner's knowledge and understanding of autism as "None" to "Moderate"'.
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In response, the NDIA acknowledged that it had a role in 'leading and encouraging inclusive practices' and was in the process of developing an Autism Staffing and Recruitment Strategy to enable it to better support autistic participants. The committee is also aware of work underway to implement the NDIS Workforce Capability Framework which 'articulates the Australian Government’s expectations about the attitudes, skills and knowledge of all workers funded under the NDIS'.
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More broadly, some submitters noted that a greater awareness and understanding of autism could also play a role in encouraging the development of autism-friendly 'public spaces, buildings, workplaces and events'.
Inappropriate service provision
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Inappropriate service provision was identified as another barrier to the provision of adequate supports. Inappropriate service provision was seen to arise primarily from:
a lack of services designed specifically for autistic people, including a lack of autism-friendly environments; and
misinformation and non evidence-based practices.
Services not designed for autistic people
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Given the breadth of presentation across the autism spectrum, stakeholders such as Marymead Autism Centre highlighted the importance of nuanced systems and services that are capable of responding to individual needs. Services also need to adjust for specific autistic characteristics. For example, as noted by TARA, executive functioning and communication challenges mean that autistic people may need more time to absorb information or may have trouble grasping information delivered verbally.
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However, the committee also heard evidence about a lack of services designed specifically to meet the needs of autistic people. More than one submitter contended that autistic people have to 'make do' with generic services, or with services 'designed for people with intellectual and cognitive disabilities' which are often not aligned with their needs. This was reflected in the results of a survey by TARA, which found many respondents reported that services:
…do not understand the needs of autistic people, and are predicated on highly medicalised and deficit-focused approaches to autism that not only fail to meet our needs, but can be actively alienating or upsetting...
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Issues with service design also extend to physical service environments and social norms that are not adapted for autistic people. For example, Aspergers Victoria highlighted general expectations which many autistic people find challenging, such as networking in office environments, making eye contact during job interviews, or keeping still during school assemblies.
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Similarly, the Tasmanian Government noted that busy and noisy environments can be 'inappropriate for people who need to avoid sensory overload'. Sensory processing disorders were also mentioned by the Coalition of Autistic Women as a barrier to accessing care. It described the experience of an autistic woman who was unable to proceed with a medical examination after being ridiculed for wanting to sit on her own clothing (rather than the plastic sheet).
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In response, it was suggested that services should implement adjustments that would allow them to better accommodate the needs of autistic clients. OTARC suggested this should include 'longer consultation times and reduced wait times (expedited triage of care), reduced sensory stimulation in waiting and testing rooms'.
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In addition, Autism Spectrum Australia suggested the development of 'national standards for autism friendly environments and services across government, business and community organisations'.
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According to the Cooperative Research Centre for Living with Autism (Autism CRC), improving physical environments can have positive impacts for all people and can create 'options for independent living, education, employment and health'. It cited one study related to school education which found that built environment factors contributed up to 16 per cent to students' learning progression. The Autism CRC also highlighted the role assistive technologies could play in supporting communication and inclusion—particularly for the 20–30 percent of non-verbal autistic people.
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Stakeholders also noted that adjustments to physical environments can also have positive impacts in terms of social inclusion and participation in the community. For example, Mr Shawn Stevenson reported seeing parents' 'tears of joy' while watching a sporting event with their children from the sensory/chill room at Melbourne Arena—something they had been unable to do for over a decade.
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To this end, the Autism Alliance pointed to an app being developed by the Autism Association of South Australia which will 'map autism friendly spaces, activities, businesses and services'. The Autism Alliance suggested there would be value in monitoring its impact on the participation of autistic people in the community.
Misinformation and non evidence-based practices
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ND Australia highlighted the importance of providing policy makers, families and autistic people with accurate and evidence-based information to inform their decisions about interventions and support. However, other submitters noted the current prevalence of misinformation about autism, as well as gaps in the available evidence. This included gaps in relation to 'which interventions or treatments are the most appropriate for the age and level of ability of the individual or what the most effective pathways might be as a child progresses through life'.
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It was suggested that this lack of information left people susceptible to 'expensive marketed interventions'. This was reflected in commentary about 'widespread' use of non-evidence-based interventions in Australia, as well as calls for only evidence-based therapies to be publicly funded.
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A lack of information was also cited as an issue in relation to NDIS-funded supports. For example, the NDIA acknowledged that gaps in evidence and guidance 'in a market driven insurance scheme can lead to highly contested interpretations of reasonable and necessary supports'. It also noted this also creates confusion for participants, families and carers 'who may receive conflicting information about different practices, particularly in the early childhood space'.
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As a result, a number of stakeholders felt that a National Autism Strategy should be used to drive an evidence-based or best practice approach to service provision. The AMA also suggested prioritising the production of 'clear and regularly updated evidence summaries' that seek to address misinformation.
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In addition to policy makers and service providers, submitters also stressed the importance of providing accurate information aimed at autistic people and their families. For example, one mother described the struggle to find trustworthy information and credited the Raising Children website with helping her to 'separate the useful advice, from the reckless and potentially dangerous information. Particularly the database of therapies that outlines the science (or lack thereof) behind it'.
Workforce shortages
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Various stakeholders noted the impact of workforce shortages on the provision of adequate supports for autistic people. While this section discusses workforce shortages in a general sense, the committee also heard about specific shortages affecting individual sectors, particularly diagnosis and early intervention. Sector-specific shortages are discussed in relevant chapters later in the report.
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Against the backdrop of general workforce shortages, submitters also indicated there is a shortage of professionals with sufficient knowledge of autism to provide adequate services to individuals and their families. Together, these challenges serve to increase waiting lists for services, decrease service choice, and lead to people using poor quality services. As described to CYDA by one family:
There is a severe shortage of therapist, support workers, treating doctors and long wait lists. Even when signed up with a service, there is a shortage of available appointments. We have accepted, in desperation, untrained and (previously) unacceptable support workers just to have another pair of hands on board. All the wonderful skill development that we previously could work on has now become purely survival.
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The committee understands that the workforce shortages affecting the autism community are a reflection of issues facing the broader disability workforce. Indeed, the NDIS National Workforce Plan: 2021–2025 (the NDIS Workforce Plan) states that the NDIS needs to attract approximately 83 000 net additional workers by 2024. However, it also identified a number of challenges to growing the care and support workforce, including:
perceptions of lower job prestige, pay and fewer opportunities for career progression compared to other sectors;
difficulties attracting and retaining culturally and linguistically diverse workers and Aboriginal and Torres Strait Islander workers;
higher rates of workforce casualisation than other sectors such as aged care;
difficulties identifying and matching suitable workers to positions;
limited opportunities for entry-level workers to enter the NDIS;
the struggle of providers to provide necessary staff training and supervision due to lack of time and resources;
training that is not matched to workers' needs or preferences, including the desire for training that is treatment or support specific (as opposed to general training or traditional qualifications);
administrative burden; and
a lack of information on the care and support market that could help providers identify areas of unmet demand and opportunities for growth.
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The NDIS itself may have also played a role in intensifying workforce shortages in certain areas. For example, the NDIS Workforce Plan indicates that the introduction of the NDIS may have disrupted pathways between education and industry, with subsequent impacts on the disability workforce pipeline. Likewise, the Tasmanian Government suggested that the NDIS had created an incentive for allied health professionals to leave they public system and set up private practices to deliver services to NDIS participants.
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These challenges present particular difficulties in thin markets, such as those in regional and remote locations and in certain service sectors (including those providing support for people with complex needs). For example, the NDIS Workforce Plan states that filling disability vacancies in regional areas takes 22 per cent longer than in metropolitan areas and there are 55 per cent fewer suitable applicants for each job. In addition, workers may leave regional and remote locations to access better supervision, support and training opportunities. Similarly, there are difficulties in attracting and retaining skilled, experienced workers to support participants with complex and/or high care needs (including those with psychosocial disability). The contribution of thin markets to inadequate supports for autistic people was also recognised by submitters to the inquiry.
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In response, stakeholders identified a range of possible actions that could be taken to address workforce shortages, including as part of a National Autism Strategy. For example, some proposed longer-term solutions, such as promotion of relevant career pathways in schools, or training more professionals in areas of workforce shortages. Others suggested short to medium term actions such as:
creating a national training centre and resources clearinghouse;
including autism content in undergraduate training courses;
upskilling the existing workforce;
providing visas for overseas specialists to work in Australia; and
expanding the range of professionals that can provide certain services, such as diagnosis.
Support for social inclusion within the community
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As described by OTARC, social inclusion involves:
…feeling accepted within your local community and being able to contribute to society in a meaningful way through participation in mainstream activities like employment and education.
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While education and employment were cited as important enablers of inclusion by stakeholders, they are not addressed in this section. Instead, issues relating to education and employment are be discussed in Chapters 12 and 13.
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According to stakeholders such as JFA Purple Orange, poor social inclusion is linked to increased loneliness, depression and anxiety. Concerningly, multiple stakeholders provided evidence about the poor inclusion of autistic people and their families within the community. For example, when SDN Children's Services asked families about their experiences, 77 per cent of respondents described feeling isolated, being excluded, and having limited opportunities for their child. Similarly, JFA Purple Orange reported that a 2018 survey found that 52 per cent of respondents felt socially isolated.
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According to TARA, autistic people are particularly vulnerable to social isolation due to challenges with communication and social engagement, as well as ignorance and discrimination within the community. Other factors contributing to social isolation included a lack of autism-friendly spaces and activities, difficulties accessing transport, and financial barriers to participation.
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As a result, some stakeholders called for strategies to increase community understanding of autism, develop autism-friendly public spaces and services that accommodate the sensory and social difficulties associated with autism, make better use of assistive technologies, and improve access to public and private transport.
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The Northern Territory Office of the Public Guardian also pointed to a shortage of services to help autistic people develop social skills and friendships and participate in the community. Accordingly, more than one submitter raised the importance of after school activities, including out of school hours care, to increasing social inclusion. However, they also noted issues with the accessibility of these activities for autistic children:
We have tried, and reluctantly ceased when it was clear these weren’t able to make adjustments for our son’s autism: after school care, music lessons, martial arts lessons and non-special needs babysitters.
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Similarly, while sport was also seen as important for social interaction, it was noted that sports were targeted either at neurotypical children or autistic children, with few truly inclusive options available. This reflected evidence provided to the committee that community organisations are not well-equipped to cater for autistic people.
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However, it was also noted that social inclusion can be complex for autistic people. For example, autistic individuals may desire inclusion but may not want 'lots of social connection' or may need the ability to 'withdraw quickly and feel safe doing so'.
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To this end, some stakeholders noted the importance of peer communities to fostering a sense of acceptance and self-worth. For example, the Commissioner for Children and Young People Western Australia reported that young autistic people felt that peer support networks allowed them to 'be themselves, share experiences, support each other'. JFA Purple Orange also noted the importance of peer networks, which are 'safe' and remove the pressure on autistic people to 'play the role of educator'.
Committee view
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The committee acknowledges the near universal concern among stakeholders in relation to the adequacy of services and supports for autistic people and their families. While there is evidence of good practice across all sectors, the committee agrees with the sentiment that, overall, the current arrangements are not adequately supporting autistic people.
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While noting that the ABS statistics about the unmet needs of autistic people are already concerning, the committee expects the rate of unmet need may be even higher given the known issues with underdiagnosis of autism—particularly among more vulnerable and disadvantaged cohorts.
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The committee is also concerned that families and carers are shouldering an undue burden because of the high reliance on informal supports for autistic people, as well as the challenges of navigating a complex service environment.
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The committee recognises that many of the reasons for inadequate service provision are deeply intertwined and cut across multiple service sectors. However, the committee does not believe these problems are intractable. Significant inroads could be made by taking action to improve service integration and access, increase understanding of autism in both community and professional settings, encourage the development of autism-specific and autism-friendly services, and build workforce capacity and capability.
National Disability Insurance Scheme (NDIS) services
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Given that there are almost 150 000 autistic participants, the committee is concerned that the NDIS is not providing autistic children and adults with the services and supports that they need and are entitled to receive. It is particularly troubling that many NDIA staff and service providers seem to lack a basic understanding of how autism presents and suitable interventions consistent with best practice. Further, the experiences of some autistic participants and their carers when interacting with the NDIS do not seem to be consistent with the Participant Service Charter.
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Many of the issues raised in this inquiry are symptomatic of broader problems with the NDIS which have been consistently raised through work undertaken by the Joint Standing Committee on the NDIS.
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The committee notes that resolving the access, planning and service issues associated with providing reasonable and necessary supports for autistic participants requires further consideration. In addition, it is too early to tell whether the reset of the Early Childhood Approach is better meeting the needs of young autistic children. For these reasons, the committee recommends that the Joint Standing Committee on the NDIS undertake a comprehensive review of how the NDIS supports autistic children and adults.
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The committee recommends that the Joint Standing Committee on the National Disability Insurance Scheme (NDIS) undertake an inquiry into the experiences of autistic participants in the NDIS with particular focus on:
the level of reasonable and necessary supports required by autistic participants across the course of their life;
whether the NDIS is currently funding these reasonable and necessary supports;
the implementation of the new Early Childhood Approach;
whether adequate information and support is being provided to participants and prospective participants in a timely manner;
how autism diagnosis is recognised by the NDIS;
the ability and capacity of NDIS planners to make informed decisions regarding the reasonable and necessary supports to be funded by the NDIS;
the level of under-utilisation in NDIS plans for autistic participants;
ensuring there is sufficient service capacity to deliver funded supports; and
how the NDIS interacts with other government funded support services— such as education, employment and health services—to provide coordinated and holistic care for autistic participants.
Service integration
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Many stakeholders described their experience of trying to access services as one of 'falling between the cracks'. This seems to be driven by a combination of the complexity of autistic people's needs and highly siloed service delivery sectors that do not deal well with that complexity.
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The committee also heard the process of accessing services described as a 'fight' or a 'battle', with the outcome often dependent on the knowledge, capacity and resources of autistic individuals and their families. Also, while the NDIS is a critical source of support, the process of engaging with the NDIA has significantly increased the administrative burden on autistic people and their families. Indeed, the committee heard that the time and effort required to successfully navigate the NDIS can be equivalent to a full-time job.
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In the committee's view, it simply shouldn't be this hard. Autistic people and their families should not have to fight for the services and supports they require. They should not be shuffled between agencies when their support needs don't fit neatly into a particular service delivery box. They should not be required to pay twice for services, such as diagnosis, simply because they move from one state to another.
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While acknowledging that there are inherent challenges to service delivery within a federation, it is the committee's view that the current service environment is unnecessarily fragmented and overly difficult for autistic people and their families to navigate.
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The committee acknowledges the departments' evidence that NDIS system interface issues are the subject of an ongoing clarification process. However, it is hard not to question the commitment and resolve of the parties involved when—after eight years of operation—little progress appears to have been made and autistic people continue to pay the price.
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As a priority, the National Autism Strategy should identify actions to drive better integration between federal and state systems, including NDIS and mainstream services.
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The committee recommends that the National Autism Strategy identify actions to drive better integration between federal and state service systems, including a roadmap to better integrate NDIS and mainstream services. This roadmap should be consistent with the recommendations made by the Joint Standing Committee on the NDIS in relation to service integration and overlap with other systems.
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The committee recommends that the National Disability Insurance Agency provide support coordination assistance as a default inclusion in plans for autistic NDIS participants who:
have complex or high care needs;
are from other identified disadvantaged and vulnerable cohorts; and
have significantly underutilised plans.
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One year of support coordination assistance should also be a default inclusion in plans for all new NDIS participants.
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The committee recommends that the National Disability Insurance Agency continue to improve the capacity of its staff, including Local Area Coordinators, to provide better support to autistic people. This should include a focus on both understanding and meeting autistic participants' support coordination needs.
Understanding of autism
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The need to increase autism understanding was raised repeatedly by stakeholders. The committee heard that ignorance of autism within the community, as well as misconceptions about autistic people, are significant barrier to the inclusion of autistic people and their families in the community, at school, as well as in workplaces. Accordingly, the committee sees value in a public education campaign to increase awareness and understanding of autism in the community. The committee notes that this will align with the policy priority contained in Australia's Disability Strategy 2021–2031 in relation to improving community attitudes to people with disability.
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Recommendations related to improving autism understanding in specific service sectors are addressed in later chapters.
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The committee recommends that a National Autism Strategy identify actions to increase community understanding of autism. This should include consideration of a public education campaign that portrays the diversity of the spectrum and helps improve inclusion across a range of settings, including schools, workplaces and in the general community. All materials should be tailored and accessible to First Nations and Culturally and Linguistically Diverse audiences.
Appropriate services
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A lack of autism understanding means there are very few services that are designed with the specific sensory and communication challenges of autistic people in mind. In many cases, the changes required to improve service provision are minimal and easily implemented—for example, reduced sensory stimulation in health care waiting rooms.
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Given the ease with which many adjustments could be made, the committee was disturbed to hear reports of autistic people being subjected to unnecessarily traumatic care experiences—including being ridiculed after advocating for small adjustments to the service environment.
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The committee is also concerned that poor autism knowledge is leaving autistic people and their families vulnerable to misinformation. This includes the marketing of expensive therapies that are unsupported by evidence and are, at best, ineffective and, at worst, dangerous.
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The committee recommends that the National Autism Strategy identify actions to promote awareness of, and access to, quality, evidence-based information about autism for autistic people, their families, and professionals in autism-related sectors.
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The committee recommends that the Australian Government develop guidelines on autism-friendly service design through the National Autism Strategy in order to help service providers tailor services and service environments to meet the needs of autistic individuals.
Workforce
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It is apparent to the committee that there is a critical shortage of professionals with the skills, knowledge and experience to provide services that meet the needs of autistic people. This relates both to the skills of the existing workforce, as well as shortages of professionals in specific sectors and locations.
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However, the committee remains cognisant that this is an issue for the broader disability workforce as a whole. Accordingly, the committee sees value in developing a national autism workforce plan that aligns with other relevant workforce strategies, such as the NDIS National Workforce Plan: 2021–2025—noting, however, the recent recommendation of the Joint Standing Committee on the NDIS in relation to the need to prioritise the development of clear and measurable outcomes for that plan.
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At the same time, skilled migration arrangements should be reviewed with an autism lens to ensure they are matched to current areas of need. Additional recommendations to address to workforce issues in specific sectors are dealt with in later chapters.
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The committee recommends that a National Autism Workforce Plan be developed under the auspices of the National Autism Strategy to ensure the supply of a suitable and appropriate workforce to deliver services for autistic people. The National Autism Workforce Plan should identify actions, accompanied by clear and measurable outcomes, to:
improve data around current and future workforce gaps and shortages (as they relate to the needs of the autism community);
attract, train and retain workers in identified areas of shortage (both geographic and sector/profession-specific);
increase autism content in relevant undergraduate training courses;
develop accredited autism-specific short courses (or promote existing accredited courses) for current workers; and
embed autism as part of ongoing professional development requirements related to professional registration.
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Where appropriate, the National Autism Workforce Plan should align with existing workforce strategies, including the NDIS National Workforce Plan: 2021–2025.
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The committee recommends that the Department of Home Affairs work with the Departments of Social Services, Health, and Education, Skills and Training, as well as the National Disability Insurance Agency, to ensure current skilled migration arrangements facilitate migration to fill identified autism workforce shortages.
Social inclusion
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Australia's Disability Strategy 2021–2031 identifies the full participation of people with disability in social, recreational, sporting, religious and cultural life as a policy priority.
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However, inclusion of autistic people in the community is poor, with many experiencing loneliness, isolation, exclusion and depression. The committee is particularly alarmed at the high proportion of autistic people who report feeling isolated and the significant proportion of autistic NDIS participants who report having no friends other than family or paid staff. Given these concerning statistics, the committee believes the National Autism Strategy should include play a role in monitoring progress on social inclusion.
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The committee accepts that improving social inclusion requires support and opportunities for autistic people to engage in mainstream activities, as well as the opportunity to participate in peer networks.
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The committee heard that current efforts to support participation in mainstream activities are hampered by the fact that community groups are generally not well-equipped to cater for autistic people. This was identified as a particular issue for parents in relation to after school activities, including sport and out of school hours care.
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Multiple stakeholders also highlighted the importance of participation in education and employment to increasing the inclusion of autistic people, along with the need to increase community understanding of autism and promote development of more autism-friendly spaces and events. Recommendations relating to these issues are addressed in following chapters.
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The committee recommends that the National Autism Strategy include measures to allow for monitoring and reporting of the social inclusion of autistic people within the community.
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The committee recommends that peer-to-peer networking and support projects continue to be funded as a priority under the Department of Social Security's Information, Linkages and Capacity Building program.
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The committee recommends that online resources be developed by existing autism education and advocacy organisations—funded through the Department of Social Security's Information, Linkages and Capacity Building program—and made widely available to help community organisations understand how they can actively support and include autistic people.