This chapter provides an overview of the current state of disability advocacy in Australia, as well as a discussion of identified challenges in relation to autism advocacy. These include:
unmet demand and lack of funding for advocacy services;
the lack of autism-specific advocacy services; and
challenges arising from the breadth of the autism spectrum.
The Department of Social Services defines disability advocacy as 'acting, speaking or writing to promote, protect and defend the human rights of people with disability'. Advocacy can be either systemic or individual.
Stakeholders highlighted the importance of advocacy to people with autism, as well as those with disability more broadly. For example, the Tasmanian Government stated that advocacy services are 'critical in helping ensure people with disability can enjoy the same rights and access the same services as others'. Likewise, the Marymead Autism Centre described advocacy as 'a vital safeguard for autistic people across an array of different rights and areas of life'. Another submitter pointed to the effectiveness of funding advocacy services, noting that 'every dollar used by Australia's independent disability advocacy agencies delivers $3.50 in benefits'.
In 2019–20, Australian Government funding for disability advocacy was 'close to $46 million'. This included $20.8 million for the National Disability Advocacy Program (NDAP) which awards grant funding to providers to deliver disability advocacy support. Advocacy support provided under the NDAP aims to promote 'the social inclusion and participation of people with disability within the economy and community'.
It is not clear how many autistic people currently access advocacy support via the NDAP. Since 2017–18, autism has been captured within a broad 'psychiatric' category that includes a number of other conditions. In 2018–19, that category represented 22.9 per cent of clients accessing disability advocacy services. Prior to that time, in 2016–17, autistic people represented 12.4 per cent of people accessing services funded through the NDAP.
The Australian Government also funds advocacy support through the National Disability Insurance Scheme (NDIS) Appeals Program. This program provides support to people seeking reviews of decisions of the National Disability Insurance Agency (NDIA) in the Administrative Appeals Tribunal. Support is provided through access to a disability advocate who acts as a support person, as well as access to funding for legal services in some cases. In 2019–20 the program funding was $10.7 million.
According to the Department of Social Services, Department of Education, Skills and Employment, and Department of Health (the departments), all state governments—except South Australia—also have programs to fund disability advocacy services.
Evidence presented to the inquiry suggests that the primary issues identified in relation to advocacy relate to:
unmet demand and lack of funding for advocacy services;
the lack of autism-specific advocacy services; and
challenges arising from the breadth of the autism spectrum.
Demand and funding for advocacy services
The need for autism advocacy support was underlined by the findings of an Australian Autism Alliance (the Autism Alliance) survey which asked about people's 'confidence and understanding' in relation to self-advocacy. The survey found that:
more than 22 per cent of autistic adults reported that they did not know where to get help if they were experiencing violence, abuse or neglect;
45 per cent did not know where to get help if they were experiencing discrimination or exclusive practices (such as a lack of opportunities to access education, accommodation, recreation and leisure); and
39 per cent did not know where to get help with the law, tenancy, Centrelink or with having enough money to meet their needs, or to speak up for themselves and self-advocate in general.
The Autism Advisory and Support Service noted that this may be a particular issue for disadvantaged cohorts whose vulnerability in the absence of an advocate may result in a failure 'to access crucial supports'. Mrs Grace Fava Chief Executive Officer of the Autism Advisory and Support Service explained further:
We work in south-western Sydney. We have one of the largest [culturally and linguistically diverse] communities, one of the lowest socio-economic communities… There is a lack of funding for advocacy and a lack of funding for family support, yet, if you want a good outcome for an individual, you need to support the whole family.
While there appears to be a lack of data on the utilisation of advocacy services, some stakeholders also indicated that demand is exceeding supply.
Evidence provided by Autism Aspergers Advocacy Australia (A4) appeared to support the notion of a shortage of advocacy services, with reports that funded services were referring growing numbers of autistic clients to charities and volunteer organisations such as A4. Likewise, another submitter described disability advocacy services as 'understaffed, overburdened and overwhelmed'. This sentiment was also evident in the experience of one autistic submitter who contended that existing services were being overwhelmed by demand:
Oh, and please fund disability advocates—they are scarce and overwhelmed. The notion that they would help me with an appeal of my NDIS rejection was illusory. They just didn't have the staff to cover it. I get the feeling that disability advocacy partly still exists to salve the consciences of people who never expect to need a disability advocate.
The committee heard that the NDIS was a key factor behind the increase in demand. For example, the Autism Alliance indicated that, following the introduction of the NDIS, there was a 70 per cent increase in the number of people requesting advocacy related to disability services and the NDIS.
At the same time, the Autism Alliance suggested that this was compounded by the absence of an 'ongoing and consistent funding model', as well a lack of clarity about the roles of the Commonwealth, state and territory governments in relation to advocacy funding. The Autism Alliance also suggested that funding for advocacy services was not keeping up with the increased demand. It also observed that the United Nations' Committee on the Rights of Persons with Disabilities had 'expressed concern about the unsustainability and inadequacy of resources for continuous, individual and independent advocacy programmes in Australia'.
Accordingly, stakeholders such as the Autism Alliance and the Commissioner for Children and Young People South Australia, called for the development of a nationally consistent approach to disability advocacy that clearly defined responsibilities for all levels of government.
Autism-specific advocacy services
Evidence presented to the committee suggests there is the need to improve dedicated advocacy services for autistic people. This includes:
less reliance on general disability advocacy services;
support for autistic-led advocacy services;
support for systemic advocacy; and
a focus on building autistic people's self-advocacy skills.
General disability advocacy services
Despite autism being the largest single cohort in the NDIS, the committee heard that the NDAP does not support autism-specific advocacy services and that many of the general advocacy organisations just assume that 'supports designed for other disabilities will suit autistic people'.
However, as noted by Different Journeys, such assumptions can often set autistic people up for failure, rather than success. A4 gave the example of generic services focusing on social inclusion rather than access to behaviour support that would help an autistic person prepare for a transition to increased social inclusion. According to A4:
The advocates simply do not recognise and understand – they have no experience with – the risks due to unsupported social submersion and how social skills might or might not emerge for an autistic person.
This was supported by multiple stakeholders, who expressed the view that general disability advocacy groups are not equipped to meet the needs of autistic people. For example, A4 considered 'generic' advocates—or those with specialisations other than autism—to be 'quite poor in their advocacy for autistic clients'. As a result, this means that autistic people have:
…very little experience of appropriate supports and few good models to emulate so their self-advocacy is often limited by their lack of experience of appropriate services and service models.
Different Journey concurred and argued that the unique nature of autism requires autism-specific advocacy that can model 'different ways to communicate, behave, and question to ensure that their voices are heard'.
However, the committee heard that this issue is not peculiar to Australia. The Autism Alliance referred to a United Kingdom survey of advocacy organisations which found that 62 per cent 'experienced significant difficulty working with autistic people and had little confidence in the ability to advocate effectively for this population', while 32 per cent would not provide services to autistic people. The concerns of advocacy organisations generally centred on 'their understanding of autism or concerns about advocating for people with communication difficulties'.
In response, at least one submitter advocated for training to help 'disability advocacy organisations to build their autism capacity in leadership and governance'.
Autistic-led advocacy services
The committee heard that 'while autism training is necessary', it is not sufficient on its own to improve advocacy services for autistic people. For example, Ms Geraldine Robertson explained that:
…the complexity of autism means that it is unlikely that most people will understand the subtleties required to understand the motives, motivators and challenges experienced by this population. Even parents, with all their love and dedication to their children, often do not have those perspectives.
The importance of lived experience of autism was also highlighted by Different Journeys:
Our role is simple compared to those that are funded for advocacy—we have lived experience, we understand, we can show [autistic people] advocacy in a way that empowers them to eventually be able to do it for themselves…
Accordingly, there was support for increasing the role autistic-led organisations play in advocating for autistic people. For example, the Autism Alliance argued that autistic people need advocacy that is 'user led' and has 'a thorough understanding of the issues faced by autistic people'.
The Autism Alliance and other submitters also highlighted the potential for autistic-led advocacy organisations to work with mainstream services and general advocacy groups to build their understanding of autism.
This view was supported by Ms Geraldine Robertson who also noted that the 'very deep understanding of autism' acquired by many autistic people is proving to be a valuable resource to 'many organisations with autistic advisory boards and autistic employees who provide a conduit between organisations and systems and the autistic users'.
A number of stakeholders raised the need to better support autism-related systemic advocacy. The Autism Alliance pointed to the role systemic advocacy plays in aligning 'government policy and program design with the needs and expectations of autistic people'.
Accordingly, there were multiple calls for governments to establish and fund a national peak body for autism organisations—or a national autism advisory panel—that could provide advice to government and 'apply an autism lens to policy proposals, legislation and regulations beyond those that specifically target people with autism'. Mrs Donna Blanchard of Autism Tasmania shared this view:
We know that our community here is very vulnerable. They don't have the sophistication that's required to have their voice at a table such as this. We do need to invest in systemic advocacy at state and federal level.
Both the Cooperative Research Centre for Living with Autism (Autism CRC) and The Autistic Realm Australia (TARA) also raised the importance of autistic representation on boards (and in other influential positions) in order to influence policy and practice. To this end, the Autism CRC acknowledged recent progress in this regard and highlighted the work of its Sylvia Rodger Academy which delivers programs in governance, leadership and advocacy. At the time of submitting, the Autism CRC noted that 14 autistic adults were in the process of completing the Governance Program, while 45 autistic adults had participated in the Future Leaders programs since 2018.
Building self-advocacy skills
The committee heard multiple calls for action to build the self-advocacy skills of autistic individuals. For example, A4 highlighted the 'enormous scope to develop autistic self-advocacy and self-determination'. It observed that increasing the ability of autistic people to advocate for themselves will, in turn, help to increase their independence as they experience success in their advocacy attempts. However, it also pointed to the need for services and communities to be 'receptive and responsive' to autistic self-advocacy.
Both Amaze and Different Journeys suggested that peer networks could play an important role in building the capacity of autistic people to advocate for themselves and other autistic individuals. As an example, Amaze pointed to the role its statewide peer-led support groups play in engaging and empowering autistic people and parents of autistic children:
Built on foundations of self-reliance and self-advocacy, this network provides autistic people with information, empowerment, and control over how they engage with the autism community and essential service providers, such as the NDIS. Importantly, these groups help their members to self-manage a range of decisions, challenges and opportunities in their engagement with mainstream services and in their daily lives.
However, Different Journeys stressed that additional funding would be needed to expand peer-led supports. It explained that high burnout rates and an overreliance on goodwill and volunteer staff mean that current arrangements are unsustainable.
The committee also heard evidence that capacity building could start much earlier in life. For example, the Commissioner for Children and Young People Western Australia argued there was a need for 'mechanisms to support children and young people with autism to have a say in decision making and the design of services and supports'.
Some stakeholders pointed to the role schools could play in building self‑advocacy skills for autistic people. For example, The Sycamore School explained how self-advocacy and self-determination skills are instilled in students at the school:
…and just as we expect they will be able to engage with the NDIS in this way into the future, we similarly involve them in goal setting and planning for their educational and developmental progress. By empowering students to describe their wants, needs and challenges, our teaching teams are able to develop meaningful and effective teaching and learning strategies … The impact of this approach has been extremely positive, resulting in students taking ownership of the goals they set, and responsibility for their effort and progress.
Similarly, the Scope-University of Melbourne Partnership suggested schools could be supported to provide advocacy training that is 'designed by, or at least in consultation with, autistic individuals'.
Some stakeholders, such as the Government of Western Australia, advocated for the NDIS to play a greater role in funding individual capacity building activities.
The breadth of the autism spectrum
Evidence provided to the committee suggests that some of the challenges in relation to autism advocacy arise from the breadth of the spectrum itself. As one submitter noted, the diagnostic term Autism Spectrum Disorder 'covers people in very different "worlds", with vastly diverse experiences and conflicting worldviews regarding autism'. Similarly, A4 noted that:
The issue of what autism actually is, in the eyes of the autism community, is a primary issue. Autism is defined in manuals of 'disorder' … However, many articulate autistics say autism is not a 'disorder', instead they describe it as a 'condition' or 'difference'. Some use the term 'neurodivergent'.
This diversity means that while some autistic people are very capable of self‑advocacy, many others are not. A4 pointed out that, in 2018, almost 70 per cent of autistic Australians were 'severely or profoundly affected by their autism'. This means:
They are not good communicators. They do not articulate clearly their long-term goals. They need support with strategy, communication, organisation, activation and with achieving their goals and aspirations.
Communication Rights Australia also noted that some autistic people are affected to the point of having little or no speech.
More than one submitter contended that the variation in the spectrum was 'unfortunately a source of discord between autism advocates'. This seemed to be a particular issue in relation to autistic people with more complex presentations, who may be non-verbal and therefore reliant on parent or carer advocacy.
While the importance of parental advocacy was recognised by a number of submitters, A4 asserted that 'non-autistic advocates often do not respect the views and experience of autistic people'. Other submitters emphasised the need to prioritise the autistic voice over non-autistic parents and carers. For example, TARA argued that while parents and health professionals have an important advocacy role, 'those voices must not be prioritised over those of the autistic community':
Listen to us. People talk over autistic people all the time. Governments and society need to actively seek out autistic people to hear what we have to say. Non-autistic parents of autistic children are not representative of our community. We need people to listen to us and take action based on what we say – Joanna, 48.
The voices and lived experience of adult autistic people need to be prioritised over parents of autistic children. We were those children. Those children will grow up to be us. While any parent knows their child best, autistics know autism best. We could be such valuable assets and allies if we were listened to – Anna, 56.
However, the committee also heard concerns that this approach prioritises the voices of articulate autistic people who are capable of self-advocacy and is not inclusive of people with more complex presentations, including those with concurrent intellectual disability, as well as multiple co-occurring conditions.
For example, one submission described the experience of Alex, a 12-year-old boy in the Complex Needs NDIS stream, who is diagnosed as Autism Spectrum Disorder Level 3 with 'severe intellectual disability, severe communication disorder, severe sensory processing difficulties and generalised anxiety disorder', as well as physical health issues that cause significant digestive pain. Alex also displays 'high frequency, high intensity behaviours that present significant risks to himself and others on several days each week'. While Alex's parents explained they are 'genuinely glad' for autistic people who are able to contribute productively to society and can celebrate their autism as neurodiversity, they argued that:
…the neurodiversity perspective cannot be considered an appropriate representation for Alex and others with severe/profound [intellectual disabilities] and debilitating co-morbidities. That would put them at very high risk of being misunderstood, left behind, in some cases worse off and inevitably hidden.
In relation to autistic behaviours, A4 noted that less verbal autistic people will sometimes 'express their needs and preferences through their behaviour' and that people do not recognise this until it escalates to a point where it cannot be ignored and is called 'unwanted' or 'challenging'. According to A4, 'people rarely recognise and respect expression-through-behaviours as 'self-advocacy' or 'self-determination'.
While recognising Alex's behaviours as expressions of distress, Alex's parents explained that these behaviours are triggered significantly by the combination of both his physical health issues, which cause extended periods of distress and pain, and his neurodevelopmental conditions. They explained that these behaviours continue to present daily, 'despite support from highly skilled staff in all settings, an environment which is fully adapted to meet his needs and attentive, devoted parents and carers'. Accordingly, Alex's parents argued that there was a need for:
…much greater understanding of those severely impacted with autism, severe/profound [intellectual disabilities] and complex behaviours … so that appropriate advocacy can be established. This is a small, highly vulnerable group of individuals, largely misunderstood, whose existence and heart-breaking realities are often treated, in our view, even by leading autism advocacy groups, as 'myths' to be dispelled or stereotypes to be avoided.
Likewise, Communication Rights Australia emphasised the need for specialised advocacy services to ensure the need, concerns and wishes of autistic people with high communication support needs.
Despite these diverging views, the committee heard from other stakeholders who hoped to bridge this divide. For example, one submitter noted that while her experience of autism may not resonate with the parents of autistic children with severe challenges, she hoped that 'as both a mother and an autistic, I can contribute to some common understanding between the two groups'. She also suggested connecting self-advocates with families of children with multiple disability so that parents and self-advocates could learn from each other by walking 'a mile in each other's shoes'.
In addition to the tension between parents and self-advocates, the committee also heard that there were polarised views within the autistic community itself. For example, A4 stated that 'some autistic advocates do not respect other autistics with views that vary from their own'. A similar view was shared by Aspergers Victoria which reflected that 'sometimes the loud voices of a few advocates who are capable of gaining voice shout down the voices of others on the spectrum'. It argued that:
This needs to be considered—that an influential advocate doesn't speak for everyone. The autism community includes our autistics, parents/families, allies and professional supporters—and they all need a voice. We need a balance of voices to be heard at government levels.
Given the heterogeneity of the autism spectrum, and the relative recency of the consolidated Autism Spectrum Disorder diagnostic label, Aspergers Victoria suggested pursuing a federated model of representation, which is an approach sometimes used in health advocacy.
The committee heard that there is significant unmet demand for advocacy services, particularly in the wake of the introduction of the National Disability Insurance Scheme (NDIS). However, a lack of data means it is difficult to gain an accurate understanding of the utilisation and effectiveness of existing advocacy services.
The committee also heard that the current advocacy landscape lacks clarity in relation to its funding, roles and responsibilities, with the Commonwealth, state and territory governments all playing a role in funding advocacy services for people with disability.
The committee is also aware that a National Disability Advocacy Framework (NDAF) was agreed by all disability ministers in 2008. While its aims are laudable, the status of the document is unclear. As it appears to lack performance measures and timeframes, it is also not clear how much progress has been made toward delivering on its stated objectives.
Given the increase in demand for advocacy services, as well as the amount of time that has passed since the NDAF was released, the committee sees merit in a renewed commitment to a national approach to disability advocacy. This should include a review of the NDAF, as well as the inclusion of performance measures to allow monitoring of progress against agreed commitments.
Within this broader national framework, an autism-specific advocacy plan should be developed to guide actions in relation to improving advocacy for autistic people.
The committee recommends that the Commonwealth, state and territory governments re-commit to a national approach to disability advocacy. This should include:
reviewing the effectiveness of the National Disability Advocacy Framework, including the current status of its outputs and reform and policy directions; and
updating the National Disability Advocacy Framework to include performance measures and reporting requirements for each of the outputs and reform and policy directions.
The committee recommends that a National Autism Advocacy Plan be developed under the auspices of the National Autism Strategy. The National Autism Advocacy Plan should:
align with the National Disability Advocacy Framework; and
improve data collection and reporting on the utilisation and effectiveness of advocacy services for autistic people;
encourage the growth of autism-specific advocacy services, including autistic-led services;
increase the numbers of autistic people appointed to key positions in all organisations, including autism and disability-related organisations;
ensure better understanding of, and advocacy for, the needs of autistic people with complex presentations; and
bring together the diverse views and perspectives of the autistic community to improve advocacy for all autistic people.
The committee is sensitive to the fact that there are range of views, capabilities and experiences among the autistic community. This reflects the diversity of the spectrum itself and can be a source of tension within the community.
For example, the committee heard from people who are able to embrace and celebrate their autism from a neurodiversity perspective. It also heard from parents and carers who fear that this view prioritises autistic people who are capable of self-advocacy and excludes those with complex presentations, as well as those with multiple disabilities.
During the course of the inquiry, the committee heard evidence that some autistic people thought they knew autism best, while some parents and carers felt they knew their children best. As one stakeholder suggested to the committee, perhaps more could be achieved if these groups walked a mile in each other's shoes and built on what they have in common.
However, the committee also notes that tensions also exist within the autistic community itself. Therefore, the committee cautions against an approach to advocacy that sees any one group claiming to represent all autistic people or an approach that focuses only on the loudest voices at the table. The committee believes that, while there is a need to centre autistic voices, other voices must be heard as well, particularly when they speak for autistic individuals who are not able to advocate for themselves.
The committee recommends that the proposed National Autism Advocacy Plan reflects the need for differentiated advocacy services to support the range of presentations across the spectrum and the stage of life for those autistic people requiring advocacy.
As with disability services in general, generic advocacy approaches are not delivering for autistic people. The committee heard that these services lack the autism-specific skills and understanding to be effective advocates. Evidence presented to the committee suggests that uninformed advocacy can be ineffective, and in some cases, harmful.
Given that autism is the biggest single disability cohort in the NDIS and the NDIS is a significant driver of increased demand for advocacy service, the committee finds it incomprehensible that the major national advocacy program—the National Disability Advocacy Program—does not appear to fund autism-specific advocacy services. In the committee's view, there is an urgent need to ensure that all government-funded disability advocacy programs support at least one specialist autism advocacy service.
At the same time, governments should identify ways to improve the capacity of general advocacy services to support autistic people. This should include utilising the knowledge and skills of autism-specific advocacy groups.
The committee recommends that the Australian Government ensure that the National Disability Advocacy Program and other Commonwealth-funded disability advocacy programs fund at least one autism-specific advocacy service in each state and territory.
The committee recommends that state and territory governments commit to funding autism-specific advocacy services under their funded disability advocacy programs. Progress toward implementation could be monitored through the National Federation Reform Council.
The committee recommends that the Australian Government, through the Department of Social Services' Information Linkages and Capacity Building program, fund autism-specific advocacy groups to build the capacity of general disability advocacy organisations to support autistic people.
Alongside more targeted and responsive advocacy services, there is also a need to build the self-advocacy skills of autistic people. Not only does this improve access to services and supports but it builds confidence and independence—all of which have an impact on overall life outcomes.
The committee heard that peer support is one key way of building self-advocacy skills. Likewise, schools could also play a role in developing self-advocacy skills via the 'Personal and Social Capability' general capability within the Australian Curriculum. The potential for the NDIS to play a greater role in supporting participants' advocacy skills should also be explored.
The committee recommends that the Australian Government, through the Department of Social Services' Information Linkages and Capacity Building program, fund autism-specific advocacy groups to build the self-advocacy and self-determination skills of autistic people (and their families), including through peer support programs.
The committee recommends that the Department of Education, Skills and Employment work with state and territory education authorities, the Australian Curriculum, Assessment and Reporting Authority, Education Services Australia and other relevant stakeholders to provide guidance and resources to help schools teach self-advocacy skills. While applicable to all school children, there should be a particular focus on making this content accessible to students with autism.
The committee recommends, as part of the inquiry into the National Disability Insurance Scheme proposed in Recommendation 6, that consideration be given to whether the National Disability Insurance Scheme could play a greater role in supporting the development of self-advocacy skills (as part of a participant's Capacity Building budget).