Submission to the Disability Discrimination Act Review
Intellectual Disability in All Policies
22 October 2025
Dr. Mary-Anne Lancaster
2. People with ID and Discrimination
Executive Summary
Intellectual Disability (ID) is rarely taken into account in any Disability Policy. In fact, intellectual disability is rarely taken into account in ANY policy. ‘Disability’ is not a homogenous term and people with an intellectual disability need to be considered as a specific group with specific needs, concerns and wants. Often their disability includes physical elements but there are many people with ‘invisible’ ID. They look normal but they do not have the same cognitive functioning as the general population. They are the most vulnerable group in society to bullying and discrimination and are often overlooked in any
discussion or working group.
In its review of the Disability Discrimination Act, the Disability Commission need to acknowledge people with ID as a particularly vulnerable group who need extra allowances
and specific recommendations.
People with an ID also need to be consulted and involved in the formation of any act or
policy.
Of note, in the current issues paper ‘Intellectual Disability’ is mentioned twice — both times referencing an academic article. Nowhere in the issues paper is there acknowledgment of intellectual disability being another layer that needs to be considered and discussed. I outline below the extent of the problem and make some recommendations regarding how to ensure
inclusivity of people with an ID in any policy formation or review.
I call on the Federal Government to include people with an ID in any review of any policy. Specific to this current review, people with an ID need to be consulted and
considered.
3. People with ID and Discrimination
Intellectual Disability: Facts and Figures
The WHO defines disability, not in terms of a condition a person has but, by society’s inability to cater for human diversity with barriers such as negative attitudes, inaccessible
transportation and poor social supports (World Health Organization, 2022, 2023).
Those with an intellectual disability have difficulties with cognitive functioning, such as learning, and adaptive functioning, such as social participation and communication skills with onset under 22 years old (Luna, 2024; World Health Organization, 2019). About 1-3% of the global population have intellectual disability equating to around 200 million people (Luna, 2024; Special Olympics, 2025). For many people, the cause is unknown but common cause include genetic conditions and problems during pregnancy and birth (Luna, 2024;
Special Olympics, 2025; World Health Organization, 2019).
There have been some major initiatives in the last ten years for people with disability, the development of the NDIS being the most notable, but even in the formation of the NDIS, the voices of those with ID, or their carers, were largely ignored in the early design phase (Inclusion Australia, 2025). Given that 77% of people with disability have a physical disability and only 6.5% have ID (Australian Institute of Health and Welfare, 2024), it is easy to see why many disability reforms are targeted at changing physical environments to make them more accessible. However, making them physically more accessible does not make them more accessible to those who have ID and the Disability Royalty Commission made specific note of how even many disability service providers, who have physically disabled members in their executive, do not have any people with ID in their governance and leadership levels
(Royal Commission into Violence, 2023).
In Australia, 1.8% of the population, or approximately 450 000 people, have intellectual disability (ID) (Australian Government, 2021). They are one of the most vulnerable groups in
Australia and, compared to the general population, they have much poorer health outcomes
4. People with ID and Discrimination
(Australian Institute of Health and Welfare, 2024; Inclusion Australia, 2023) worsened by intersecting negative social determinants of health including poverty, unemployment and social isolation (Public Health: Local and Global Perspectives, 2022). They die 27 years earlier than the general population, have a preventable death rate of 38% compared to 17% and they have four times the rate of potentially avoidable hospital admissions (Australian Government, 2021; Council for Intellectual Disability, 2025a; Dew A et al., 2018; Trollor et al., 2017; Williams et al.).
In those with ID under 65 years old, 81% need help with at least one activity of daily living (Australian Institute of Health and Welfare, 2024). 53% of people with ID experience high or very high levels of psychological distress and 57% do not have enough fruit or vegetables in their diet. Despite higher use of medical services, their illness detection rates are much lower than the general population and they are less likely to take part in preventive health activities (Australian Commission on Safety and Quality in Health Care, 2024; Inclusion Australia, 2025). They are 10 times more likely to be bullied than those without a disability and they are overrepresented in the criminal justice system as both victims and offenders (Dew A et al., 2018).
One in 5 people in Australia suffer from a mental illness (Dew & Gaskin, 2020) whereas 57% of people with an ID are estimated to have a concomitant mental health condition (Inclusion Australia, 2025). However, mental health policies in Australia overlook people with an ID (Dew A et al., 2018). Their access to preventive activities and diagnostic tools in healthcare settings is very limited (Inclusion Australia, 2023) and there is limited expertise in the medical profession for dealing with mental illness in those with ID (Dew A et al., 2018). They have higher rates of common mental health disorders such as schizophrenia, anxiety and dementia but their onset is at an earlier age (Australian Institute of Health and Welfare, 2024; Dew A et al., 2018).
S5 | PEOPLE WITH ID AND DISCRIMINATION
For example, in people with Down’s Syndrome, Alzheimer’s Disease is very common and often starts from aged 30 (Evans & Trollor, 2018). In people with other forms of ID, dementia is more likely to be diagnosed 10 years earlier than the rest of the population (Evans & Trollor, 2018). Although other risk factors are similar to the general population, including cardiovascular disease, poor diet, lack of exercise and social isolation, they are all more common in people with ID (Evans & Trollor, 2018). Given that people with ID often have difficulties with communication, the early signs of dementia are often overlooked or misinterpreted as just due to the disability itself or behavioural (Evans & Trollor, 2018).
Health inequities for people with intellectual disability are further increased by the barriers they face in accessing the healthcare they need. Barriers include: longer wait times to see a health professional; higher service costs; discrimination by health professionals; lack of communication amongst health professionals; and a medical workforce that is poorly skilled in dealing with people with an ID (Australian Institute of Health and Welfare, 2024; Trollor et al., 2017). Many people with ID also have difficulty communicating which may not be taken into account by health professionals (Doherty et al., 2020; Trollor et al., 2017). They often rely on paid support workers or family members for their communication but neither group may be personally equipped or appropriately trained to identify or interpret health issues (Webber et al., 2015).
Inequities exist in many other areas that may directly or indirectly influence the health and wellbeing of those with ID. In the areas of employment and financial security, nearly 1 in 6 (17%) are unemployed (Australian Institute of Health and Welfare, 2024). Despite this, Disability Employment Services (DES) remain inaccessible to most people with an ID, only 3.1% of the DES caseload being people with an ID (Inclusion Australia, 2023, 2025). Further barriers to employment include: complex systems, lack of ongoing funding and negative attitudes of businesses and individuals (Inclusion Australia, 2023). However, negative attitudes are reduced when people with ID are employed (Sarker, 2025). 45% of people with ID have a low level of personal income with only 23% being able to easily raise emergency
6. People with ID and Discrimination
funds (Australian Institute of Health and Welfare, 2024). 72% of people with ID rely on government payments as their main source of income (Inclusion Australia, 2023).
The needs of people with ID are often not taken into account in public transport in Australia (Council for Intellectual Disability, 2025b). People with ID rely on their environment, including the design of public transport, to live healthily (Vlot-van Anrooij et al., 2019). People with ID describe transport as “our ticket to accessing the community” (Council for Intellectual Disability, 2019) p.3. Appropriate and accessible transport are vital for community participation and in reducing social isolation (Disability Practice: Safeguarding Quality and Service Delivery, 2024) whereas lack of access to appropriate transport can reduce further the health of the person with ID independent of their disability (Vlot-van Anrooij et al., 2019).
Barriers to accessing public transport include: changes in routine; getting on and off before the doors close; inability to use a smartphone; and safety (Council for Intellectual Disability, 2019; Hamilton & Jacob, 2024). To make public transport fully accessible, people with ID need to be involved at the start of any planning exercises or projects (Council for Intellectual Disability, 2025b).
Intellectual Disability in All Policies: Aims and Objectives
Aim: I call on the Federal Government to expand the current Health in All Policies program to Intellectual Disability in All Policies. This will specifically include those with an intellectual disability in all areas of policy and ensure that in all areas, but specific to this current Discrimination Act, people with an ID are consulted and acknowledged. People with ID are one of the most vulnerable and marginalized groups in our society and are often discriminated against in all areas of society including education, transport, health and housing.
Objectives:
- Empower people with ID to contribute to decision making, research or policy formation with any issues regarding themselves. Nothing about us without us (Commonwealth of Australia, 2023)
- Promote positive and inclusive community attitudes of all people with ID (United Nations, 2006)
- Increase the numbers of those with ID in leadership and advisory roles of relevant organizations (Bigby & Henderson, 2018)
- Increase the knowledge and expertise of healthcare professionals in the area of intellectual disability (Dew A et al., 2018)
- Increase awareness and knowledge within each government department and their role in promoting the health of people with ID (Inclusion Australia, 2023)
- As an organization, to have a strong leadership and advocacy history with people with ID, to expand our role in government policy and make our voices heard (Council for Intellectual Disability, 2021)
8. People with ID and Discrimination
Recommendation: Build capacity of those with ID to allow them to take on leadership roles within government and non-government organizations to foster inclusivity and address discrimination.
People with intellectual disability need to be advisors and educators to government and communities (Bigby & Henderson, 2018) and advocates for themselves and others (Australian Government, 2021). When people with ID are put in positions of leadership and power, research shows that there is systemic attitudinal change to inclusivity (Anderson & Bigby, 2024; Inclusion Australia, 2023). This should also include involvement of people with ID in workforce training and in the development, implementation and assessment of any programs in the organization (Australian Commission on Safety and Quality in Health Care, 2024).
Barriers to this include: lack of appropriate support; the use of technical words; and putting in place unrealistic time frames (Inclusion Australia, 2025). Further challenges arise when they have difficulty communicating (Doherty et al., 2020) but also in their communication style. Warr et al (2017) found, for example, that people with ID were more likely to use descriptive language rather than providing explanations. Unfortunately, the response to these challenges is often exclusion by researchers and community organizations. In the USA, 75% of clinical trials funded by the National Institute of Health were found to exclude adults with ID (McDonald et al., 2022; Sadler, 2023). Strategies to increase involvement for this group include: using plain language or alternative methods of communication such as pictorial aids; addressing them directly and respectfully; and assuming competency (McDonald et al., 2022).
Specifically regarding people with ID being included in governance and decision-making, there is limited research but studies suggest that participation and inclusion is highly dependent on the culture of the organization and the support within the organization (Curryer et al., 2025). In Australia, there have been several initiatives to increase the leadership and
9. People with ID and Discrimination
Governance skills of people with disabilities (Curryer et al., 2025) but only one that focused on people with ID (Voice at the Table, 2024). This project included capacity building but its two year funding in 2022 provided by the Australian Government ended in June 2024 and has not been extended (Voice at the Table, 2024).
One current project is the Down Syndrome Australia’s Health Ambassador Program (Australian Government, 2021). These ambassadors are people with Down’s Syndrome who inform and advise others how to better communicate health messages to people with Down’s Syndrome. For similar models to be enacted, the culture within the given organization needs to value and support holistic inclusion and there needs to be commitment to appropriate learning pathways and individual support (Anderson & Bigby, 2024; Curryer et al., 2025).
References
Anderson, 8., & Bigby, C. (2024). ‘Nothing about us without us’. Including Lived Experiences of People with Intellectual Disabilities in Policy and Service Design. In C. Bigby & A. Hough (Eds.), Disability Practice: Safeguarding Quality Service Delivery (pp. 225-246). Springer Nature Singapore. https://doi.org/10.1007/978-981-99-6143-6_12
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