Submission 5 — Inclusion Australia — National Autism Strategy

Response to the draft National Autism Strategy

May 2024

Contents

• Introduction

• Our recommendations

• Expanding the National Autism Strategy Oversight Council

Meaningful engagement with autistic people with an intellectual disability, their families and

• support networks

Behaviour support and restrictive practice: addressing inadequacy, injustice, and human

• rights violations

• Empowering decision making

• Economic inclusion for all

• Over-representation in the criminal justice system

• Support for representative and advocacy organisations

• Research

• Tracking the Strategy’s progress

• Areas for further consideration

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Introduction

Inclusion Australia is the national peak organisation representing the rights and interests of Australians with an intellectual disability and their families. Founded 70 years ago in 1954, our mission is to work to make sure people with an intellectual disability have the same opportunities as people without disability. Our strength is in our national representation and our connection to our community. We have a member organisation in every state across Australia, and a branch in the Northern Territory:

• Developmental Disability WA (DDWA)
• NSW Council for Intellectual Disability (CID)
• Parent to Parent (P2P), Queensland
• South Australian Council on Intellectual Disability (SACID)
• Speak Out Association of Tasmania (Speak Out)
• Victorian Advocacy League for Individuals with Disability (VALID).

Thank you for the opportunity to provide feedback on the draft National Autism Strategy. Inclusion Australia, along with our members, holds great concerns that the draft strategy does not take into account the unique needs of autistic people with an intellectual disability or complex support needs. We do not believe the consultation process to develop the strategy has meaningfully and effectively included autistic people with an intellectual disability, their families and support networks. As a result, we believe the draft strategy and its proposed commitments is in no way adequate to achieve its vision statement or goal.

We believe the commitments in the draft strategy do not capture many of the key points raised by autistic people with an intellectual disability, their families, and supporters during interviews for its development¹ – noting only a small number of people from this community were consulted. We are also concerned that the submissions made by organisations including Inclusion Australia² are not widely reflected in the commitments. We fear without significant emphasis and consideration of their unique circumstances and needs, this highly vulnerable group of people are at the greatest risk of remaining silenced and excluded by the very strategy intended to improve their quality of life.

To address this, Inclusion Australia provides the below information and recommendations and request they are taken into consideration in the finalisation of the strategy, its accompanying action plans, and its measures and evaluation framework.

We would warmly welcome any further discussion and engagement with the Oversight Council and the Department of Social Services on this important topic.

1 Department of Social Services. (2023). Developing a National Autism Strategy: Consultation Report (Stage 2) https://engage.dss.gov.au/wp-content/uploads/2024/02/NAS_Consultation-Report_full-report_v3-final.pdf. 2 See https://www.inclusionaustralia.org.au/submission/developing-the-national-autism-strategy/ (November 2023) and https://www.inclusionaustralia.org.au/submission/engaging-with-autistic-people-with-an-intellectual-disability/ (June 2023).

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Our recommendations

Inclusion Australia recommends that:

• The Oversight Council be expanded to incorporate at least one person who is dedicated to representing the voices of autistic people with an intellectual disability, their families and supporters.
• Further consultation be carried out with autistic people with an intellectual disability, their families and support networks – and that the consultation be done in line with the suggestions made in our June 2023 report.
• The action plans are co-designed by people who are autistic and have an intellectual disability, their families, support networks and representative organisations to ensure that the activities they contain are meaningful to them and will bring about measurable changes in their quality of life and wellbeing.
• The Oversight Council commissions urgent research into behaviour support and restrictive practice, focussing on strategies that are evidence based and promote human rights and alternative strategies to managing behaviours that present a risk of harm to self or others.
• The Oversight Council engages with people with disability, their families and supporters, Disability Representative Organisations, relevant academics and government departments to review and modernise the National Framework for the Reduction and Elimination of Restrictive Practices, and in doing so develop a plan for its implementation, evaluation, and review.
• A definition of ‘behaviours of concern’ is agreed upon and upheld by behaviour support practitioners; ensuring that behaviours that are identified as ‘concerning’ are done so based on their potential to cause harm to self or others, not on what is considered ‘normal’ or ‘socially acceptable’, and that restrictive practices are only utilised in an instance where a behaviour meets the agreed definition.
• That action plans:

  • Explicitly and clearly outline how the strategy will address issues surrounding behaviour support and restrictive practice.

  • Include activities that will ensure people with disability, their families and support networks understand what restrictive practices are, how and when they might be used, how to recognise signs of improper use, and how to raise concerns if they believe practices are being used improperly.

  • Include activities about educating disability support workers and other frontline staff on when and how to implement restrictive practices, and what to do if they believe practices are being used in an improper manner.

  • Include a commitment to advocate for a greater level of professionalism and accountability for both disability services providers and behaviour support practitioners and, that this greater accountability incorporates a reporting mechanism in order to gather and maintain what practices are being recommended, how often they are being utilised, strategies being implemented to reduce their use and elimination. This advocacy effort must include a push for

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monitoring to ensure only evidence-based practices that uphold a person’s human rights are utilised.

• The National Autism Strategy adopts the Supported Decision Making Framework recommended by the Final Report into the Violence, Abuse, Neglect, and Exploitation of People with Disability and endorses its use.
• The National Autism Strategy recommends supported decision making practices are meaningfully integrated into the practices, policies, and processes of disability services providers.
• The action plans include:
  • A broader range of economic participation initiatives, including addressing recommendations from the Disability Royal Commission around segregated employment.
  • Activities that related to the reform of Disability Employment Services to ensure they meet the needs of autistic people with an intellectual disability.³
• The NAS should engage with the existing research on the over-representation of autistic people and autistic people with an intellectual disability in the criminal justice system.
• Action plans should include activities that relate to:
  • Addressing current issues within police culture and disability awareness; the lack of support available to those undergoing interview, interrogation, and court proceedings; the treatment once in prison, transition support leading up to, at the time of, and post release; ongoing support to maintain probation and parole requirements; and support to maintain other obligations and requirements.
  • Advocating for the ongoing resourcing of advocacy services for those currently or likely to be engaged with the justice system, including justice advocates.
• Advocacy and representative organisations, including non-autism specific organisations, are funded and resourced adequately to execute the commitments outlined in the strategy.
  • As part of this resourcing, organisations are provided with specific support to undertake impact measurement so that they can demonstrate the success of their work.
  • Consideration be given to the cost and resources involved in providing information in accessible formats, such as videos, social stories, and easy read and this is factored into the funding allocation.
• The funding requires a genuine commitment to co-designing the information and activities with autistic people, including those with other disability or who belong to other strategy target groups, and that these contributors be paid appropriately for their time and expertise.
• The action plans incorporate research that builds the evidence-base for therapies and supports to which autistic people with an intellectual disability are subject
• Autistic people with an intellectual disability are adequately represented in participant samples for any research that is conducted.

3 Inclusion Australia. (2021). Making Disability Employment Services work for People with an Intellectual Disability https://www.inclusionaustralia.org.au/wp-content/uploads/2022/02/Our-Submissions_2022_02_What-Works-Final-Report-2021.pdf

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• The findings of any research are:

  • Shared publicly so that people can make informed decisions about which therapies and supports they integrate into their lives
  • Used to inform updates to government and business policies and procedures, and where required, legislation to ensure that only therapies and supports backed by a rigorous and peer-reviewed evidence-based are used on autistic people and autistic people with an intellectual disability, and that these therapies and supports uphold their human rights.

• Attention is paid to the areas for further consideration we identify on pages 18-20.

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Expanding the National Autism Strategy Oversight Council

Inclusion Australia applauds the demographic and professional diversity within the Oversight Council. We know that having a diverse leadership group is imperative to have a well-rounded strategy. We are concerned however that there is no one within the committee present to specifically represent the voices of autistic people with an intellectual disability. We have raised this issue with the Department several times over the course of the development of the strategy. Additionally, to the best of our knowledge, there is no one with this representative role on the Council’s Working Groups either.

As we discuss in the following section, there is no exact data on how many people in Australia are both autistic and have an intellectual disability. International research estimates that 40-60% of autistic people also have intellectual disability. This is a significant number of people, so much so that the strategy consultation paper recognised autistic people with an intellectual disability as one of the target groups to engage with.

Autistic people with an intellectual disability have a variety of complex needs. These needs mean they are regularly excluded from participating in consultation, research, and evaluation activities so their needs go unheard, unaccounted for, and unrecognised. As a result, autistic people with an intellectual disability live in a world where they must engage with a large variety of government agencies and both disability and mainstream services that are not trained or resourced to understand and meet their needs. This contributes to higher rates of violence, abuse, neglect and exploitation, and contributes substantially to poor life outcomes.

The Department and the Oversight Council have a responsibility to ensure the strategy and its accompanying action plans are inclusive of the voices and needs of all autistic people in Australia – including the specific and unique needs of people who are autistic and have an intellectual disability. An important way to increase the potential for this is to ensure that they are represented on the Oversight Council by a person who is familiar with their needs and is able to advocate for them.

Inclusion Australia recommends:

• The Oversight Council be expanded to incorporate at least one person who is dedicated to representing the voices of autistic people with an intellectual disability, their families and supporters.

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Meaningful engagement with autistic people with an intellectual disability, their families and support networks

In 2023 Inclusion Australia was commissioned by the Department of Social Services to provide advice on how to engage with autistic people with an intellectual disability during the consultation period for the National Autism Strategy.⁴ When compared to the full report on consultations released by the Department in 2023,⁵ it is evident that the considerations we provided were not sufficiently implemented. As a result, the consultation report indicates that only nine autistic people with an intellectual disability and/or complex support needs, and only eight family members participated in the consultation activities for the development of the draft strategy.

There is limited data available in Australia on the number of people who are both autistic and have intellectual disability, however, international research suggests that 40-60% of autistic people have an intellectual disability.⁶ Based on this estimate, participation in the consultation activities is alarmingly low, and means that the consultation process findings are not representative. We are concerned that if the department and Oversight Council do not undertake a greater level of consultation using the guiding principles we outlined in our June 2023 report, the strategy will fail to reflect the unique needs of this group of people, and they will continue to remain excluded and silenced.

In addition to this, the input made by Inclusion Australia on the development of the strategy through our November 2023 submission – compiled through our long-standing relationships, advocacy work, research, and feedback – do not appear to be incorporated into the strategy commitments. We acknowledge that the Department provided ample opportunities for consultation and feedback from organisations during the development of the strategy, but we are disappointed that the draft strategy does not capture the diversity of input received, or the diversity of autistic people’s experiences.

Inclusion Australia recommends:

• Further consultation be carried out with autistic people with an intellectual disability, their families and support networks – and that the consultation be done in line with the suggestions made in our June 2023 report.
• The action plans are co-designed by people who are autistic and have an intellectual disability, their families, support networks and representative organisations to ensure that the activities they contain are meaningful to them and will bring about measurable changes in their quality of life and wellbeing.

4 Ibid. 5 Department of Social Services. (2023). Developing a National Autism Strategy: Consultation Report (Stage 2) https://engage.dss.gov.au/wp-content/uploads/2024/02/NAS_Consultation-Report_full-report_v3-final.pdf. 6 As quoted in Inclusion Australia’s report to DSS in June 2023, https://www.inclusionaustralia.org.au/submission/engaging-with-autistic-people-with-an-intellectual-disability/.

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Behaviour support and restrictive practice: addressing inadequacy, injustice, and human rights violations

We are incredibly concerned that the commitments in the draft strategy do not explicitly refer to addressing the crisis that currently surrounds restrictive practices and behaviour support. Data from the NDIS, findings from and research commissioned by the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability,⁷ and the NDIS Review⁸ all emphasise that restrictive practices disproportionately affect autistic people and people with an intellectual disability. These reports also verify that in many closed settings restrictive practices are used on a routine basis as a way to manage participants even in the absence of behaviour that would be considered dangerous to themselves or others.⁹

This crisis has been manifesting for decades and has resulted in the injury, traumatisation, torture, and death of a presently unmeasured number of people with disability.¹⁰ The improper use of restrictive practices, the use of high-risk practices, and the continued promotion and utilisation of dangerous and non-evidence based restrictive practices is something that people with disability, their families, advocates, representative organisations, academics and many others, including all levels of government, have been aware of for several decades.

In 2014, the Department of Social Services published the National Framework for the reduction and elimination of restrictive practices in disability settings.¹¹ This document was approved and endorsed by disability ministers from all states and territories at the time. The framework and its commitments were never effectively implemented or actioned and as a result, no change has occurred.

Family members of autistic people with an intellectual disability raised concerns around behaviour support and restrictive practices as a key concern of theirs during consultations on the draft strategy,¹² and these concerns were further emphasised through submissions made by organisations such as Inclusion Australia.¹³

Inclusion Australia recommends:

• The Oversight Council commissions urgent research into behaviour support and restrictive practice, focussing on strategies that are evidence based and promote human

7 Spivakovsky, C., et al. (2023). Research Report: Restrictive Practices – A Pathway to Elimination https://disability.royalcommission.gov.au/publications/restrictive-practices-pathway-elimination. 8 NDIS Review. (2023). Reduction and elimination in the use of restrictive practices https://www.ndisreview.gov.au/resources/reports/working-together-deliver-ndis/part-two-markets-and-support-systems-empower-8. 9 Royal Commission into Violence, Abuse, Neglect, and Exploitation of People with Disability. (2020). Public Hearing 6: Psychotropic Medication, Behaviour Support and Behaviours of Concern [transcript] https://disability.royalcommission.gov.au/public-hearings/public-hearing-6. 10 Spivakovsky et al. 2023, op cit. 11 Department of Social Services. (2014). National Framework for Reducing and Eliminating the Use of Restrictive Practices in the Disability Service Sector https://www.dss.gov.au/our-responsibilities/disability-and-carers/publications-articles/policy-research/national-framework-for-reducing-and-eliminating-the-use-of-restrictive-practices-in-the-disability-service-sector. 12 Department of Social Services. (2023). Developing a National Autism Strategy: Consultation Report (Stage 2) https://engage.dss.gov.au/wp-content/uploads/2024/02/NAS_Consultation-Report_full-report_v3-final.pdf. 13 See our submission from November 2023. See also https://engage.dss.gov.au/developing-the-national-autism-strategy/developing-the-national-autism-strategy-submissions/.

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rights and alternative strategies to managing behaviours that present a risk of harm to self or others.

• The Oversight Council engages with people with disability, their families and supporters, Disability Representative Organisations, relevant academics and government departments to review and modernise the National Framework for the Reduction and Elimination of Restrictive Practices, and in doing so develop a plan for its implementation, evaluation, and review.
• A definition of ‘behaviours of concern’ is agreed upon and upheld by behaviour support practitioners; ensuring that behaviours that are identified as ‘concerning’ are done so based on their potential to cause harm to self or others, not on what is considered ‘normal’ or ‘socially acceptable’, and that restrictive practices are only utilised in an instance where a behaviour meets the agreed definition.
• That action plans:

  • Explicitly and clearly outline how the strategy will address issues surrounding behaviour support and restrictive practice.

  • Include activities that will ensure people with disability, their families and support networks understand what restrictive practices are, how and when they might be used, how to recognise signs of improper use, and how to raise concerns if they believe practices are being used improperly.

  • Include activities about educating disability support workers and other frontline staff on when and how to implement restrictive practices, and what to do if they believe practices are being used in an improper manner.

  • Include a commitment to advocate for a greater level of professionalism and accountability for both disability services providers and behaviour support practitioners and, that this greater accountability incorporates a reporting mechanism in order to gather and maintain what practices are being recommended, how often they are being utilised, strategies being implemented to reduce their use and elimination. This advocacy effort must include a push for monitoring to ensure only evidence-based practices that uphold a person’s human rights are utilised.

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Empowering decision making

Inclusion Australia has a long and proud history of promoting and protecting the right and ability of people with an intellectual disability to make their own decisions about themselves and their lives, in line with Articles 3, 4, and 12 on the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). We do this through using and promoting the use of supported decision making.¹⁴

Supported decision making is a widely used and well researched practice that encourages individuals to seek support when making a decision while empowering them to make the decision themselves, before pausing to reflect upon the decision they have made. Supported decision making resources also provides information and guidance to the people who provide support to decision makers. We believe that supported decision making is an effective tool that meets the objectives of commitment 19 in the draft National Autism Strategy and that should be adopted as part of the strategy.

There have been pushes towards national consistency and improving government understanding of supported decision making for at least a decade in Australia, with the Australian Law Reform Commission recommending national principles in 2014,¹⁵ but little progress has been made. The final report from the Disability Royal Commission also advises a national approach,¹⁶ based on research it commissioned,¹⁷ and the NDIS released a policy on supported decision making in 2023.¹⁸

Inclusion Australia recommends:

• The National Autism Strategy adopts the Supported Decision Making Framework recommended by the Final Report into the Violence, Abuse, Neglect, and Exploitation of People with Disability and endorses its use.
• The National Autism Strategy recommends supported decision making practices are meaningfully integrated into the practices, policies, and processes of disability services providers.

14 https://www.inclusionaustralia.org.au/make-decisions-real/

15 Equality, Capacity and Disability in Commonwealth Laws (ALRC Report 124) | ALRC

16 Final Report - Volume 6, Enabling autonomy and access | Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability

17 Bigby, C., Carney, T., Then, S-N., Wiesel, I., Sinclair, C., Douglas, J., & Duffy, J., (2023). Diversity, dignity, equity and best practice: a framework for supported decision-making. Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability https://disability.royalcommission.gov.au/policy-and-research/research-program

18 Supported decision making policy | NDIS

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Economic inclusion for all

Inclusion Australia fears the draft National Autism Strategy and its commitments around economic inclusion do not reflect the needs of autistic people with an intellectual disability or those with complex support needs.

While there are certainly examples of entrepreneurship being a viable career path for autistic people with an intellectual disability and we support any initiative to increase these opportunities, the government requirements that surround self-employment often result in this being a path that requires significant assistance from a family member or support network.¹⁹ As a result, many autistic people with an intellectual disability find themselves involuntarily and unknowingly being directed along the polished pathway²⁰ towards segregated employment within an Australian Disability Enterprise (ADE) where they are paid sub-minimum wages and forced into jobs with no real opportunity for career growth and development or, the opportunity to imagine and consider, let alone pursue, a career path that reflects their dreams and interests.²¹

We ask that changes are made to the strategy to incorporate matters relating to segregated employment, Australian Disability Enterprises, sub-minimum wages, and alternative models for employment, and that they are included in the development of action plans as well. Further to this, we request the Oversight Council and the strategy to broaden its thinking around economic participation for all autistic people, including those with an intellectual disability and complex support needs. This should include how an ‘open employment first’ perspective can be used when considering employment options, how the concepts of customised employment can be integrated into job design, and how ‘inclusion’ can be understood from a sense of feeling included, not just being present in the workplace.²²

Inclusion Australia recommends:

• The action plans include:
  • A broader range of economic participation initiatives, including addressing recommendations from the Disability Royal Commission around segregated employment.
  • Activities that related to the reform of Disability Employment Services to ensure they meet the needs of autistic people with an intellectual disability.²³

19 Thoresen, S. et al. (2018). Meaningful social and economic inclusion through small business enterprise models of employment for adults with intellectual disability https://worksupport.com/research/documents/pdf/Meaningful_inclusion.pdf 20 McAlpine, C. (2021) The Polished Pathway [transcript] https://www.inclusionaustralia.org.au/wp-content/uploads/2022/10/The-Polished-Pathway-Final.pdf 21 Ainsworth. S., et al. (2023). Research Report: Outcomes Associated with ‘Inclusive’, ‘Segregated’, and ‘Integrated’ Settings for People with Disability https://disability.royalcommission.gov.au/system/files/2023-09/Research%20Report%20-%20Outcomes%20associated%20with%20%27inclusive%27%2C%20%27segregated%27%20and%20%27integrated%27%20settings%20for%20people%20with%20disability.pdf 22 Inclusion Australia. (2020). Fostering Employment for People with an Intellectual Disability: The Evidence to Date https://www.inclusionaustralia.org.au/wp-content/uploads/2022/02/Fostering-employment-report-coverpage.jpg 23 Inclusion Australia. (2021). Making Disability Employment Services work for People with an Intellectual Disability https://www.inclusionaustralia.org.au/wp-content/uploads/2022/02/Our-Submissions_2022_02_What-Works-Final-Report-2021.pdf

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Over-representation in the criminal justice system

It is disappointing to see the lack of consideration the draft strategy gives to autistic people and autistic people with an intellectual disability who are currently involved with the criminal justice system. Both the Senate Select Committee on Autism²⁴ and the Disability Royal Commission²⁵,²⁶ cover this topic in great detail, highlighting the multiple ways in which current police culture and practice models disproportionately impact autistic people and autistic people with an intellectual disability.

Research commissioned by the Royal Commission indicates that, while there is somewhat inadequate data, approximately 15% of people in prison have an intellectual disability and that 1 in 4 young indigenous people in prison have an intellectual disability.²⁷ Other studies suggest significantly higher rates of disability among people who are incarcerated.²⁸

The case studies in the Royal Commission research detail a number of distressing interactions with the justice system, many of which initially began as relatively minor encounters that, had they been handled with a higher degree of disability awareness, would likely have resulted in nothing more than a 1-2 minute informal conversation.²⁹,³⁰ Instead, because of poor police practices, lack of adherence to process and legislation, and the failure of multiple services and supports (often due to under-funding and a lack of resources), autistic people and autistic people with an intellectual disability enter into a cycle of offence and incarceration. It is often during this time of incarceration that detainees are subject to violence, abuse, neglect, and exploitation and are unable to access the required support services, which has significant flow-on affects for their future.³¹

Inclusion Australia recommends that:

• The NAS should engage with the existing research on the over-representation of autistic people and autistic people with an intellectual disability in the criminal justice system.
• Action plans should include activities that relate to:
  • Addressing current issues within police culture and disability awareness; the lack of support available to those undergoing interview, interrogation, and court

24 Australian Parliament Select Committee on Autism. (2019). Services, Supports, and Life Outcomes for People with Autism: Chapter 16 – Justice 25 Royal Commission into Violence, Abuse, Neglect, and Exploitation of People with Disability. (2020). Issues Paper – Justice https://disability.royalcommission.gov.au/system/files/2022-03/Issues%20paper%20-%20Criminal%20justice%20system.pdf 26 Royal Commission into Violence, Abuse, Neglect, and Exploitation of People with Disability. (2023). Criminal Justice and People with Disability https://disability.royalcommission.gov.au/system/files/2023-09/Final%20Report%20-%20Volume%208%2C%20Criminal%20justice%20and%20people%20with%20disability.pdf 27 Ibid 28 https://www.inclusionaustralia.org.au/submission/submission-to-the-drc-on-criminal-justice-system/ 29 Dowse, L., et al. (2023). Research Report: Police Responses to People with Disability. University of New South Wales. https://disability.royalcommission.gov.au/system/files/2023-05/Research%20Report%20-%20Police%20responses%20to%20people%20with%20disability.pdf 30 Royal Commission into Violence, Abuse, Neglect, and Exploitation of People with Disability. (2023). Criminal Justice and People with Disability https://disability.royalcommission.gov.au/system/files/2023-09/Final%20Report%20-%20Volume%208%2C%20Criminal%20justice%20and%20people%20with%20disability.pdf 31 Dowse, L., et al. (2023). Research Report: Police Responses to People with Disability. University of New South Wales. https://disability.royalcommission.gov.au/system/files/2023-05/Research%20Report%20-%20Police%20responses%20to%20people%20with%20disability.pdf

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proceedings; the treatment once in prison, transition support leading up to, at the time of, and post release; ongoing support to maintain probation and parole requirements; and support to maintain other obligations and requirements.

• Advocating for the ongoing resourcing of advocacy services for those currently or likely to be engaged with the justice system, including justice advocates.

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Support for representative and advocacy organisations

There are many advocacy and representative organisations across Australia that have built trust, rapport and connections with autistic people, their families and support networks. The success of lots of the commitments in the draft strategy will rely on advocacy and representative organisations to connect with, disseminate information to, and continually engage with autistic people and the broader community. While we are supportive of this approach and believe these organisations are best placed to undertake this work, we wish to draw attention to two key points:

• In order to do this in a sustainable way, advocacy and representative organisations must be provided with secure and ongoing funding and resources to undertake this work. This must factor in the increasing number of people being diagnosed with autism and therefore the likely increase in workload over the coming years.
• This funding must be distributed to a variety of advocacy and representative organisations, not just those that are autism-specific. As the draft strategy demonstrates, autism co-occurs with a number of other disabilities and as a result, it is likely that many autistic people will engage with other organisations.

Inclusion Australia recommends:

• Advocacy and representative organisations, including non-autism specific organisations, are funded and resourced adequately to execute the commitments outlined in the strategy.

  • As part of this resourcing, organisations are provided with specific support to undertake impact measurement so that they can demonstrate the success of their work.
  • Consideration be given to the cost and resources involved in providing information in accessible formats, such as videos, social stories, and easy read and this is factored into the funding allocation.

• The funding requires a genuine commitment to co-designing the information and activities with autistic people, including those with other disability or who belong to other strategy target groups, and that these contributors be paid appropriately for their time and expertise.

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Research

While Inclusion Australia supports reviewing the diagnostic tools used to identify autism to ensure they are dynamic and account for the many forms of intersectionality experienced by autistic people, we believe that the research focus of the strategy must go much further.

In his reflections on the draft strategy, Professor Andrew Whitehouse noted that many therapies and supports that autistic people are subject to do not have a rigorous evidence-base, or in some cases, any evidence to support their validity at all.³² We are concerned that this lack of evidence-based therapies and supports is contributing to the poor outcomes experienced by autistic people with an intellectual disability, especially in relation to behaviour support and restrictive practice, as we have already discussed.

We strongly encourage the Oversight Council to expand its research focus and incorporate reviewing and where appropriate, validating existing therapies and approaches. This should also be extended to exploring the evidence-base that surrounds emerging therapies and supports, and ensuring this information is made publicly available to health and allied health professionals, behaviour support practitioners, disability support workers, families, and people with disability so that they can make informed decisions about what therapies and supports they access, how often and under what circumstances.

When research is conducted with and about autistic people, it is essential that the sample contains a diverse mix of subjects, including autistic people with an intellectual disability. This cohort of people is one of the most likely groups to be subject to a wide variety of therapies and supports and therefore it is essential that they are meaningfully represented and incorporated into research so the research findings can be appropriately applied to them.

Inclusion Australia recommends:

• The action plans incorporate research that builds the evidence-base for therapies and supports to which autistic people with an intellectual disability are subject
• Autistic people with an intellectual disability are adequately represented in participant samples for any research that is conducted.
• The findings of any research are:
  • Shared publicly so that people can make informed decisions about which therapies and supports they integrate into their lives
  • Used to inform updates to government and business policies and procedures, and where required, legislation to ensure that only therapies and supports backed by a rigorous and peer-reviewed evidence-based are used on autistic people and autistic people with an intellectual disability, and that these therapies and supports uphold their human rights.

32 Whitehouse, A. (2024). The National Autism Strategy is urgently needed. Does the government’s new draft do enough to help those in crisis?. University of Western Australia. https://www.uwa.edu.au/news/article/2024/april/the-national-autism-strategy-is-urgently-needed-does-the-governments-new-draft-do-enough-to-help-those-in-crisis

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Tracking the Strategy’s progress

As the Oversight Council works towards the finalisation of a measurement and evaluation framework for the strategy, we ask that consideration is given into how the framework can be used and applied in dynamic and innovative ways.

As we have discussed throughout this submission, while all autistic people experience barriers and disadvantage across multiple life domains, these barriers and disadvantage are not experienced equally amongst all groups. Autistic people with an intellectual disability experience additional complex and intersecting barriers and marginalisation.

It is important that the design of the measurement and evaluation framework includes ways to measure baseline and outcome data for different groups of autistic people so that change can be measured effectively for each cohort.

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Areas for further consideration

We would like to draw attention to other areas of need that we feel the strategy and its accompanying action plans can play a role in addressing and encourage you to explore these further.

Education

We note that the strategy mentions very little about primary, secondary, or tertiary education. We believe that access to a high-quality education is an important component of achieving good life outcomes. Education provides more than opportunities for learning. It is a place to interact socially with others and build friendships; a place to explore life options, interests, and dreams; and a place where many first discover their creative or sporting hobbies, interests, and talents.

We believe the National Autism Strategy has the opportunity to play a role in ensuring that autistic people, including those with an intellectual disability, have access to a quality education that encompasses a wide variety of opportunities, the same as is made available for non-disabled children across Australia.

We have written about the barriers facing people with an intellectual disability, including those who are autistic, previously³³ and our CEO has given evidence to the Disability Royal Commission on this point.³⁴

Health services

While we support the development of a National Roadmap to Improve the Health and Mental Health of Autistic People in principle, our concerns around the meaningful inclusion of autistic people with an intellectual disability remain heightened.

Inclusion Australia supports the development of national strategies that are inclusive of all people, however, the only way that this strategy will benefit autistic people with an intellectual disability is if their unique needs and the extensive barriers they face in accessing health supports are understood and addressed.

To do this, those involved in developing the roadmap must engage with this cohort, their families, support networks, and representative organisations. In particular, the National Health Roadmap for autistic people must be aligned with the existing National Roadmap for Improving the Health of People with Intellectual Disability and the work being done through this Roadmap, including the establishment of the National Centre of Excellence in Intellectual Disability Health. It will be critical for these strategies and programs of work to complement each other so that duplication is reduced and investment can be focused where it is most needed.

33 https://www.inclusionaustralia.org.au/submission/the-experience-of-children-and-young-people-with-disability-in-different-education-settings/; https://www.inclusionaustralia.org.au/submission/submission-to-the-review-of-the-disability-standards-for-education-2005/. 34 https://disability.royalcommission.gov.au/public-hearings/transcript-day-3-public-hearing-24-canberra.

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Many of the issues we highlight in our response to the Federal Government’s recent COVID-19 Response Inquiry³⁵ are applicable to health needs of autistic people with an intellectual disability more broadly.

Mental health services

The draft strategy highlights that access to appropriate mental health supports for autistic people is severely lacking throughout the country, and Inclusion Australia supports this statement.

There is also very limited access to appropriate mental health services for people with an intellectual disability and the issues are not well understood,³⁶ so for autistic people with an intellectual disability the issue is compounded.

The barriers to access are well articulated in the Royal Australian and New Zealand College of Psychiatry’s position statement on the topic.³⁷ Of particular concern to us is the overuse and misuse of psychotropic medications on autistic people with an intellectual disability, particularly in closed settings but also amongst disability service providers, including within Specialist Disability Accommodation.³⁸ We wrote a submission on this issue in 2023.³⁹

Transport

While important work has been done by many state and territory governments to make public transport more accessible to people with physical and sensory disability—although gaps remain—public transport very often continues to be inaccessible to people with an intellectual disability. This is especially true for people with complex communication needs. This includes transport infrastructure such as vehicles, stations, interchanges, and platforms, and information about transport, including timetables, ticketing, and rules.

The impacts of this are far reaching: the inaccessibility of public transport is socially and economically disabling, and—as many recent news stories from people with disability attest⁴⁰—inaccessible public transport creates and exacerbates experiences of isolation and diminishes self-determination. It is both a human rights issue and a matter of public health and safety.⁴¹

35 Inclusion Australia (2019). Commonwealth Government COVID-19 Response Inquiry. https://www.inclusionaustralia.org.au/wp-content/uploads/2023/12/PMC_Covid19-Response-Inquiry_December23_.pdf 36 https://www.inclusionaustralia.org.au/submission/draft-national-stigma-and-discrimination-reduction-strategy/ 37 Royal Australian and New Zealand College of Psychiatry. (2022) Position Statement on Intellectual Disability: Addressing the Mental Health Needs of People with ID https://www.ranzcp.org/clinical-guidelines-publications/clinical-guidelines-publications-library/intellectual-disabilities-id-addressing-the-mental-health-needs-of-people-with-id 38 Royal Commission into Violence, Abuse, Neglect, and Exploitation of People with Disability. (2020). Public Hearing 6: Psychotropic Medication, Behaviour Support, and Behaviours of Concern [transcript] https://disability.royalcommission.gov.au/public-hearings/public-hearing-6 39 https://www.inclusionaustralia.org.au/submission/psychotropic-medicines-in-cognitive-disability-or-impairment-clinical-care-standard/. 40 Convery, S. (2022). Left behind: the fight for accessible public transport in Victoria. The Guardian. Retrieved from: https://www.theguardian.com/australia-news/2022/jun/13/left-behind-the-fight-for-accessible-public-transport-in-victoria; Dennis, J. (2022). Queensland is unlikely to meet the legislated goal of having all train stations fully accessible this year. ABC News. Retrieved from: https://www.abc.net.au/news/2022-03-23/qld-public-transport-disability-access-train/100913440; Doman, M., Scott, N., and Liu, R. (2018). The ‘unconscionable’ state of Australia’s train stations. ABC News. Retrieved from: https://www.abc.net.au/news/2018-08-29/the-unconscionable-state-of-australias-train-stations/10147174. 41 Orr, A. (2023). There’s something ‘insulting’ about this photo. Can you spot it? SBS News. Retrieved from: https://www.sbs.com.au/news/article/can-you-spot-what-is-insulting-about-this-photo/h90qxl0b5.

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Our transport systems are not public until everyone can use them. We believe that the National Autism Strategy must recognise and address the transport access needs of autistic people with an intellectual disability.

Inclusion Australia and our members have written extensively on this issue before. Our submissions are available on our website:

• July 2023, Review of the Disability Standards for Accessible Public Transport

• July 2023, IANT submission on the Disability Standards for Accessible Public Transport

• March 2021, Response to the Reform of Disability Standards for Accessible Public Transport.

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