People Living
With Disability
People Living
With Disability

People living with Disability

Disability affects most people directly or indirectly, to varying degrees and at different life stages.[46] People living with disability are diverse; they have different types and levels of disability, live in a variety of circumstances, and require various forms of assistance.

Around one in six people in Australia (18%, or about 4.4 million people) live with disability.[46]

The longer people live the more likely they are to experience some form of disability, with one in two people (50%) over 65 years of age in Australia living with disability.[46][47]

Among people living with disability in Australia[46]:

  • One in four (23%) people have a mental or behavioural disorder as their main condition
  • One in three (32%) people have severe or profound disability
  • One in three (30%) people living in households need help with health care.

People identifying as belonging to diverse populations may identify across multiple priority population groups. This intersectionality can result in compounding impacts of social, cultural, commercial and environmental determinants of health on cancer experiences and outcomes.

Current state

There are no nationally available cancer data for people living with disability and cancer; however, from 2009–2010 to 2013–2014, 13% of people aged 65 years or younger entering aged care reported cancer as their main condition.[48] Cancer survivors are more likely to experience disability and poorer wellbeing outcomes than those without cancer, particularly for people experiencing other chronic conditions, and for people living with incurable metastatic disease.[49] The formal classification of disability as a result of a cancer diagnosis or its treatment is an emerging issue in Australia.

Schemes such as the National Disability Insurance Scheme (NDIS) provide funding to eligible people with disability and connect them to services in their community. When a person acquires a disability due to their cancer experience, navigating support systems can be difficult and confusing.

People living with disability report poorer general health and higher levels of psychological distress than people without disability.[46] They often have higher rates of some cancer risk factors and behaviours than people without a disability, such as smoking and lower physical activity.[46] People living with disability often experience more barriers and have poorer access to preventive care and cancer screening services, potentially leading to underestimation of cancer risk behaviours and disease detection.[50][51]

People living with disability may not always be involved in conversations and decisions regarding their care. Increasing health provider awareness and understanding of the needs of people living with disability, and their decision makers, is important to improving health outcomes for this population group.[50][52]

Future state

The Australian Cancer Plan aims to improve equity in cancer experience and outcomes for people living with disability.

This includes increasing support to enable people with disability to be actively involved in health care decisions, improving access to cancer care, and co-designing and integrating education and training for healthcare providers. This will improve understanding and enhance cancer care for people living with disability.

Disability caused by a cancer diagnosis or treatment requires further policy consideration.

Key Frameworks, Strategies, and Relevant Plans

Australia's Disability Strategy 2021–2031

Year: 2021
Author: The Department of Social Services, Australian Government

Australia's Disability Strategy 2021–2031 aims to provide national leadership towards a more inclusive and accessible Australian society where all people living with disability can fulfil their potential as equal members of the community.

https://www.ndis.gov.au/understanding/australias-disability-strategy-2021-2031

National Roadmap for Improving the Health of People with Intellectual Disability

Year: 2021
Author: The Department of Health and Aged Care, Australian Government

The National Roadmap for Improving the Health of People with Intellectual Disability provides a pathway to improve the health of people with intellectual disability by addressing the health inequities faced by people with intellectual disability.

https://www.health.gov.au/initiatives-and-programs/national-roadmap-for-improving-the-health-of-people-with-intellectual-disability

National Strategy for the Elimination of Cervical Cancer

Year: In development
Author: Australian Centre for the Prevention of Cervical Cancer

The National Strategy for the Elimination of Cervical Cancer will aim to eliminate cervical cancer for all people with a cervix across the diverse communities in Australia.

https://acpcc.org.au/elimination/

Implementation considerations

Maximising cancer prevention and early detection
Enhanced consumer experience
World class health systems for optimal care
Strong and dynamic foundations
Workforce to transform the delivery of cancer care
Achieving equity in cancer outcomes for Aboriginal and Torres Strait Islander people

Stakeholder input

People living with disability often experience barriers to accessing preventive care. Stakeholders advised that communications and resources relating to preventive health are not always accessible: for example, they should be spoken and written in plain English.

2 Years
5 Years

Actions

1.2.1
Deliver cancer prevention and health promotion activities, including healthy lifestyles, immunisation, and population screening participation, co-designed and tailored to a range of settings.
  • Overcoming barriers to accessing preventive care for people living with disability, including through tailored nutrition and physical activity programs, and assistance with travel to preventive care services.
-
1.2.3
Promote translational research on the impact of social, cultural, commercial and environmental determinants of health on cancer outcomes for priority populations to inform policy and practice.
  • Further research on the impact of determinants such as discrimination, stigma, economic and community participation on cancer outcomes for people living with disability.
-
1.2.4
Undertake ongoing assessment of the evidence for risk-based, cost-effective population cancer screening.
  • Risk-based population cancer screening to include those living with disability and encompass risk factors and considerations associated with comorbid illnesses and chronic disorders.
-

2 Years

Actions

1.2.1
Deliver cancer prevention and health promotion activities, including healthy lifestyles, immunisation, and population screening participation, co-designed and tailored to a range of settings.
  • Overcoming barriers to accessing preventive care for people living with disability, including through tailored nutrition and physical activity programs, and assistance with travel to preventive care services.
-
1.2.3
Promote translational research on the impact of social, cultural, commercial and environmental determinants of health on cancer outcomes for priority populations to inform policy and practice.
  • Further research on the impact of determinants such as discrimination, stigma, economic and community participation on cancer outcomes for people living with disability.
-
1.2.4
Undertake ongoing assessment of the evidence for risk-based, cost-effective population cancer screening.
  • Risk-based population cancer screening to include those living with disability and encompass risk factors and considerations associated with comorbid illnesses and chronic disorders.
-

5 Years

Actions

1.5.3
Implement new, and improve existing, evidenced-based, risk-stratified cancer screening programs.
  • Risk-stratified cancer screening programs to account for the interactions between cancer risk and other chronic illnesses or disabilities.
  • Resources co-designed with disability advocacy networks to educate consumers including their carers and families on the importance of participation in cancer screening and early detection programs.
-
1.5.4
Develop a policy framework for genomics in cancer control across the cancer care continuum.
  • Policy framework to include the interactions between genetic and genomic testing for cancers with those for other chronic illnesses or disabilities.
-

Maximising cancer prevention and early detection

Stakeholder input

People living with disability often experience barriers to accessing preventive care. Stakeholders advised that communications and resources relating to preventive health are not always accessible: for example, they should be spoken and written in plain English.

2 Years
5 Years

Actions

1.2.1
Deliver cancer prevention and health promotion activities, including healthy lifestyles, immunisation, and population screening participation, co-designed and tailored to a range of settings.
  • Overcoming barriers to accessing preventive care for people living with disability, including through tailored nutrition and physical activity programs, and assistance with travel to preventive care services.
-
1.2.3
Promote translational research on the impact of social, cultural, commercial and environmental determinants of health on cancer outcomes for priority populations to inform policy and practice.
  • Further research on the impact of determinants such as discrimination, stigma, economic and community participation on cancer outcomes for people living with disability.
-
1.2.4
Undertake ongoing assessment of the evidence for risk-based, cost-effective population cancer screening.
  • Risk-based population cancer screening to include those living with disability and encompass risk factors and considerations associated with comorbid illnesses and chronic disorders.
-

2 Years

Actions

1.2.1
Deliver cancer prevention and health promotion activities, including healthy lifestyles, immunisation, and population screening participation, co-designed and tailored to a range of settings.
  • Overcoming barriers to accessing preventive care for people living with disability, including through tailored nutrition and physical activity programs, and assistance with travel to preventive care services.
-
1.2.3
Promote translational research on the impact of social, cultural, commercial and environmental determinants of health on cancer outcomes for priority populations to inform policy and practice.
  • Further research on the impact of determinants such as discrimination, stigma, economic and community participation on cancer outcomes for people living with disability.
-
1.2.4
Undertake ongoing assessment of the evidence for risk-based, cost-effective population cancer screening.
  • Risk-based population cancer screening to include those living with disability and encompass risk factors and considerations associated with comorbid illnesses and chronic disorders.
-

5 Years

Actions

1.5.3
Implement new, and improve existing, evidenced-based, risk-stratified cancer screening programs.
  • Risk-stratified cancer screening programs to account for the interactions between cancer risk and other chronic illnesses or disabilities.
  • Resources co-designed with disability advocacy networks to educate consumers including their carers and families on the importance of participation in cancer screening and early detection programs.
-
1.5.4
Develop a policy framework for genomics in cancer control across the cancer care continuum.
  • Policy framework to include the interactions between genetic and genomic testing for cancers with those for other chronic illnesses or disabilities.
-

Enhanced consumer experience

Stakeholder input

Stakeholders noted the need for effective communication between healthcare providers and people living with disability when giving complex information relevant to their cancer care. Opportunities exist to strengthen communication through audiovisual support tools and ensuring the presence of a carer or support worker.

Stakeholders identified the importance of empowering people living with disability to be partners in their care by involving them in conversations and enabling them to make informed decisions about their cancer care needs.

Disability support workers perform an enabling role in improving experiences with, and navigating access to, cancer care services for people living with disability.

2 Years

Actions

2.2.1
Develop a national framework for and implement integrated multi-channel, multi-disciplined navigation models that ensure the right support at the right time for every consumer across the cancer continuum.
  • A national framework co-designed with people living with disability and disability support healthcare providers to ensure navigation models are tailored to the needs of people living with disability.
  • Accessibility needs addressed for those with disability who are impacted by cancer.
  • Appropriate linkages with care navigation supports through the National Disability Insurance Scheme (NDIS).
-
2.2.2
Improve availability of co-designed, tailored information and care for consumers to improve health literacy and reduce cancer-related stigma.
  • Co-design information resources for people living with disability, for example people with impaired vision or hearing.
  • Co-design tailored resources for people living with disability on specific cancers and the cancer system.
  • Promote support services available for people living with disability and their families.
  • Disseminate tailored resources for people living with disability available on trusted cancer websites.
-

2 Years

Actions

2.2.1
Develop a national framework for and implement integrated multi-channel, multi-disciplined navigation models that ensure the right support at the right time for every consumer across the cancer continuum.
  • A national framework co-designed with people living with disability and disability support healthcare providers to ensure navigation models are tailored to the needs of people living with disability.
  • Accessibility needs addressed for those with disability who are impacted by cancer.
  • Appropriate linkages with care navigation supports through the National Disability Insurance Scheme (NDIS).
-
2.2.2
Improve availability of co-designed, tailored information and care for consumers to improve health literacy and reduce cancer-related stigma.
  • Co-design information resources for people living with disability, for example people with impaired vision or hearing.
  • Co-design tailored resources for people living with disability on specific cancers and the cancer system.
  • Promote support services available for people living with disability and their families.
  • Disseminate tailored resources for people living with disability available on trusted cancer websites.
-

World class health systems for optimal care

Stakeholder input

People living with disability have a variety of care needs. People living with disability can experience difficulties navigating the cancer care system and are not always supported to participate in conversations and decisions regarding their care. It is important to adopt a person-centred approach, and to understand each person’s disability and their individual needs, throughout their care pathway.

2 Years

Actions

3.2.1
Develop and implement a national framework that standardises the development, update, evaluation and uptake of Optimal Care Pathways (OCPs), including for priority population groups.
  • National framework that addresses chronic illness, accessibility, collaboration with other health professionals in multidisciplinary teams and social/human services and any potential treatment interactions.
-
3.2.2
Develop a national framework for networked, distributed comprehensive cancer care, to facilitate provision of services as close as safely possible to where patients live. This will include the role of Comprehensive Cancer Centres to enhance patient outcomes, strengthen transparency and accountability, and drive continuous improvements for all patients across the network regardless of where the care is provided.
  • National framework for networked comprehensive cancer care addressing accessibility needs for people living with disability, including the use of cancer care navigators, and the integration of carers and coordination with the NDIS.
  • Design and physical layout of comprehensive cancer centres addressing physical accessibility needs for people with a disability.
-
3.2.3
Implement innovative, evidence-based and cost-effective models of care for people living with and beyond cancer.

Innovative, evidence-based models of care that include multidisciplinary teams for people living with disability including practitioners with expertise in relevant disabilities, and/or teams with an existing relationship to the consumer, including their carers and families.

-
3.2.4
Develop and refine integrated care models to maximise access to high-quality, timely and evidence-based palliative and end-of-life care, including voluntary assisted dying.
  • Integrated care models that expand access to at-home palliative care, advance care planning, end-of-life care and VAD options and ensure consumers, carers and family members are made aware of these options.
  • Integrated care models that provide palliative care, advance care planning, end-of-life care training for healthcare practitioners and carers who work with people living with disability.
-

2 Years

Actions

3.2.1
Develop and implement a national framework that standardises the development, update, evaluation and uptake of Optimal Care Pathways (OCPs), including for priority population groups.
  • National framework that addresses chronic illness, accessibility, collaboration with other health professionals in multidisciplinary teams and social/human services and any potential treatment interactions.
-
3.2.2
Develop a national framework for networked, distributed comprehensive cancer care, to facilitate provision of services as close as safely possible to where patients live. This will include the role of Comprehensive Cancer Centres to enhance patient outcomes, strengthen transparency and accountability, and drive continuous improvements for all patients across the network regardless of where the care is provided.
  • National framework for networked comprehensive cancer care addressing accessibility needs for people living with disability, including the use of cancer care navigators, and the integration of carers and coordination with the NDIS.
  • Design and physical layout of comprehensive cancer centres addressing physical accessibility needs for people with a disability.
-
3.2.3
Implement innovative, evidence-based and cost-effective models of care for people living with and beyond cancer.

Innovative, evidence-based models of care that include multidisciplinary teams for people living with disability including practitioners with expertise in relevant disabilities, and/or teams with an existing relationship to the consumer, including their carers and families.

-
3.2.4
Develop and refine integrated care models to maximise access to high-quality, timely and evidence-based palliative and end-of-life care, including voluntary assisted dying.
  • Integrated care models that expand access to at-home palliative care, advance care planning, end-of-life care and VAD options and ensure consumers, carers and family members are made aware of these options.
  • Integrated care models that provide palliative care, advance care planning, end-of-life care training for healthcare practitioners and carers who work with people living with disability.
-

Strong and dynamic foundations

Stakeholder input

Consistent and high-quality data collection approaches are required to identify people living with disability who are navigating the cancer care system.

2 Years

Actions

4.2.1
Develop an agreed national cancer data framework to improve accessibility, consistency and comprehensiveness of integrated data assets.
  • Improved data collection to understand variation in the experience of cancer care for people living with disability and programs to improve outcomes.
  • Improved accessibility of cancer services for people living with disability through targeted analysis of linked data.
-
4.2.2
Ensure targeted and innovative research investment into areas of unmet and emerging need; and improve clinical trial design and equitable access.
  • Enhance participation in clinical trials by designing trials to be accessible to people living with disability.
  • Prioritise targeted research to better understand cancer risks and experiences of people living with disability.
-
4.2.3
Identify opportunities to improve equitable cancer care through the digital health ecosystem.
  • Digital health ecosystem that enables better access and support to people living with disability, particularly those with mobility challenges.
  • Delivery of healthcare professionals’ guidelines for engaging with carers, people with hearing impairments, people who are non-verbal or speech impaired.
-

2 Years

Actions

4.2.1
Develop an agreed national cancer data framework to improve accessibility, consistency and comprehensiveness of integrated data assets.
  • Improved data collection to understand variation in the experience of cancer care for people living with disability and programs to improve outcomes.
  • Improved accessibility of cancer services for people living with disability through targeted analysis of linked data.
-
4.2.2
Ensure targeted and innovative research investment into areas of unmet and emerging need; and improve clinical trial design and equitable access.
  • Enhance participation in clinical trials by designing trials to be accessible to people living with disability.
  • Prioritise targeted research to better understand cancer risks and experiences of people living with disability.
-
4.2.3
Identify opportunities to improve equitable cancer care through the digital health ecosystem.
  • Digital health ecosystem that enables better access and support to people living with disability, particularly those with mobility challenges.
  • Delivery of healthcare professionals’ guidelines for engaging with carers, people with hearing impairments, people who are non-verbal or speech impaired.
-

Workforce to transform the delivery of cancer care

Stakeholder input

Stakeholders emphasised the importance of the cancer care workforce involving people living with disability in conversations about their cancer care, to strengthen patient-centred cancer care and informed decision making.

Opportunities exist to upskill the cancer care workforce to ensure that health professionals understand the needs of people living with disability, such as disability awareness training.

2 Years
5 Years

Actions

5.2.1
Identify current and emerging workforce undersupply in line with cancer workforce modelling and other national health workforce strategies, and initiate planning with the sector towards building future workforce capacity and capability.
  • Model the distribution of cancer care practitioners trained in treating people living with disability and delivering complex communication.
-
5.2.2
Build on existing capability of the primary care workforce to collaboratively and sustainably support the needs of consumers.
  • Collaborate with disability support workers, specialists and networks to assist in the delivery of cancer services for people living with disability.
  • Training and upskilling opportunities on the safe delivery of care to people living with disability, including complex communication needs of people with sensory, speech, and intellectual disability and providing place-based care for those with accessibility difficulties.
-

2 Years

Actions

5.2.1
Identify current and emerging workforce undersupply in line with cancer workforce modelling and other national health workforce strategies, and initiate planning with the sector towards building future workforce capacity and capability.
  • Model the distribution of cancer care practitioners trained in treating people living with disability and delivering complex communication.
-
5.2.2
Build on existing capability of the primary care workforce to collaboratively and sustainably support the needs of consumers.
  • Collaborate with disability support workers, specialists and networks to assist in the delivery of cancer services for people living with disability.
  • Training and upskilling opportunities on the safe delivery of care to people living with disability, including complex communication needs of people with sensory, speech, and intellectual disability and providing place-based care for those with accessibility difficulties.
-

5 Years

Actions

5.5.2
Assist the sector to support all cancer care practitioners to work at the top of their scope of practice, increase retention and ensure ongoing access to continuing professional development.
  • Increase professional development in complex communication tailored to people living with disability.
-

Achieving equity in cancer outcomes for Aboriginal and Torres Strait Islander people

The Australian Cancer Plan considers an intersectional and health equity approach for Aboriginal and Torres Strait Islander people. This is more than recognising the multiple backgrounds, experiences, and ways Aboriginal and Torres Strait Islander people identify. This approach addresses the way membership of multiple groups may impact people's health and wellbeing needs and ability to access care.

Implementation of each action should consider the compounding impacts of intersectionality across other priority population groups.

2 Years
5 Years

Actions

6.2.1
Embed Aboriginal and Torres Strait Islander voices in policymaking on cancer prevention, care delivery and standards through leadership, collaboration and co-design processes.
6.2.2
Strengthen collaboration with service providers, regulatory authorities and the Aboriginal and Torres Strait Islander cancer workforce to establish clear accountability for culturally safe care and compliance with national standards.
6.2.3
Establish and enhance collaborative partnerships with communities and Aboriginal and Torres Strait Islander-led organisations.

2 Years

Actions

6.2.1
Embed Aboriginal and Torres Strait Islander voices in policymaking on cancer prevention, care delivery and standards through leadership, collaboration and co-design processes.
6.2.2
Strengthen collaboration with service providers, regulatory authorities and the Aboriginal and Torres Strait Islander cancer workforce to establish clear accountability for culturally safe care and compliance with national standards.
6.2.3
Establish and enhance collaborative partnerships with communities and Aboriginal and Torres Strait Islander-led organisations.

5 Years

Actions

6.5.1
Establish ongoing place-based engagement with Aboriginal and Torres Strait Islander people to understand emerging needs across the cancer care continuum.
6.5.2
Implement strategies to embed culturally safe care within cancer-related services for Aboriginal and Torres Strait Islander people.

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