Policy Priorities

Impact

In Australia, national health-related data collections record disability at a health service level, however data collection is inconsistent. Improving the identification of people with disability within the healthcare system will assist in facilitating improved support and optimising care, and in monitoring cancer outcomes, such as mortality, at a population level. This population-level information can indicate the accessibility of health services and enable planning to improve accessibility and determine whether people with disability are included and supported by the cancer care system.

A nationally consistent approach to the collection of disability data across health-related datasets requires standardised definitions for disability. This includes the introduction of individual disability identifiers and standardised recording of adjustments or supports required for a person’s meaningful participation in their healthcare. People could self-identify as experiencing disability enabling their interactions with the health and social services systems to be followed and understood, improving their care and how their future care is planned for and for other people with disability.

The National Cancer Data Framework, an initiative under the Australian Cancer Plan, aims to improve the accessibility, consistency and comprehensiveness of integrated data assets. Through this initiative, and others, improved data collection and reporting can enhance understanding of variation in the experience of cancer for people with disability. This will allow targeted analysis to improve the accessibility of cancer services and health outcomes for people with disability. The National Disability Data Asset (NDDA) is an initiative to bring together de-identified information from different government agencies about Australians with disability. Disability identifiers should be used consistently within this dataset to enable linkages with health datasets and provide a more detailed picture of the experiences of people with disability.

Evidence

The heterogeneity of disability definitions used in Australia can limit data linkage across different datasets.¹ Population-level data collection often does not routinely collect the required information to assign an identifier or disability indicator.² Currently, people may be assigned an identifier as part of administrative processes such as applying for social support, but this is reliant on their eligibility for certain programs or services, therefore people with mild disability, who often do not qualify for support, are under-represented.³ The Australian Bureau of Statistics Survey of Disability, Ageing and Carers consists of 160 questions and is the most comprehensive instrument identifying and measuring disability in Australia.³ Less comprehensive identification procedures, such as using derived indicators of disability, may not predict disability accurately, underrepresenting people with mild disability and those who cannot access services for other reasons.^{4, 5}

Australia’s Disability Strategy 2021–2031, emphasises the need to improve data collection and research through the NDAA and National Disability Research Partnership.⁶ The Disability Royal Commission also highlighted the lack of data on disability and made recommendations for a strategy to extend disability data collection, including improving data on types of impairment and data for intersectional analysis.⁷ In response, all governments are working together to develop an action plan to drive data collection and reporting on data-related Disability Royal Commission recommendations.

Impact

The experiences of people with disability and cancer are currently hidden from healthcare providers, policy makers and service planners due to limitations in population-level data collection. Data is required from targeted and collaborative qualitative research with people living with disability. Where data is available, it is not detailed enough to provide meaningful insights into the factors contributing to the outcomes and experiences of people within the health and social services systems. Quality information is essential to inform initiatives across the Australian health and social services sectors to address the needs of people with disability accessing cancer services. A State of the Nation report, or series of reports, developed using patient experience, available data and research evidence would help to understand the prevalence, outcomes and experiences of people with disability and cancer across the health and social care sectors. The report should importantly reflect the thoughts and experiences of people with disability and cancer, representing their diverse lived experiences. It should be developed in collaboration with people with lived experience of disability and cancer care, as well as disability representative organisations. This report could be used to identify priority areas to improve the availability of support services, and initiatives to improve accessibility and continuity of cancer care for people with disability.

Evidence

The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability report noted that health services are not designed for people with disability and adjustments are required to provide health services to people with disability on an equal basis with others, including communication supports, clinical adaptations and adjustments to the physical environment.⁷ The report also identified barriers arising from attitudes and structural arrangements in the health workforce, lack of access to person-centred care, and systemic issues.

It is estimated, that around two in five Australians with disability have experienced difficulty accessing medical facilities including general practice and dentist clinics and hospitals.⁸ This is compounded by health services having inaccessible diagnostic and treatment equipment, such as examination tables and imaging machines that cannot be lowered, prohibiting some people with disability from being able to use them.^{9, 10} People with disability also commonly report barriers to attending healthcare facilities including a lack of ramps and automatic doors, a lack of accessible and affordable on-site parking and inadequate transport options to attend medical appointments.^{10, 11} Inaccessible facilities and equipment can lead to delays in diagnosis and treatment, resulting in worse cancer outcomes.⁹ People living with intellectual or cognitive disability also have unmet health needs and experience health inequities due to a lack of accessibility within the healthcare system.¹² Barriers to optimal cancer care may present as inaccessible information and the use of inappropriate communication tools.¹² In some health services, people with disability are afforded reasonable adjustments, such as longer consultations, and extra staff for appointments to aid in supporting their needs, but this is reliant on requests for these adjustments to be made in advance of appointments.^{10, 13}

Impact

People with disability have the right to the same range, quality and standard of health care as all Australians. To participate in decisions about their treatment and care, individual needs should be identified, and the decision-making process tailored to support these requirements. Without accessible and inclusive health care services, people with disability can be excluded from receiving optimal cancer care. The adjustments required for the health service to support people’s access to care should be consistently documented, planned for, and actioned as part of routine care.

An Optimal Care Pathway for People with Disability could guide mainstream cancer services to consult, involve, and plan for the needs of people with disability to build a more inclusive health system across all interactions with cancer services. This should include pathways to plan for reasonable adjustments to care and support clear communication and the delineation of roles between an individual’s health care and disability supports to promote early and seamless information sharing between care providers. Maximising an individual’s autonomy, informed decision-making and engagement in complex healthcare conversations would be supported through the consistent application of a person-centred care approach, enabling the values, preferences and goals of an individual’s care to be considered in all treatment decisions.

Evidence

People with disability commonly experience a lack of sensitivity from healthcare professionals.¹⁰ The Royal Commission on Violence, Abuse, Neglect and Exploitation of People with Disability report noted a lack of sufficient disability knowledge and skills among healthcare workers can lead to them consciously or unconsciously making negative and false assumptions about the quality of life of people with disability.⁷

In 2019, 22% of people with disability aged 15 and over experienced some form of discrimination (including disability discrimination), as did 15% of those without disability.¹⁴ This especially affects people with severe disability or in remote areas. An estimated 25% of people with disability who experienced discrimination from healthcare staff subsequently avoided health facilities.

Healthcare professionals report receiving inadequate training on how to effectively communicate with, and care for people with disability, particularly intellectual disability.¹⁵ Healthcare professionals may fail to investigate emerging health issues and new symptoms appropriately and are more likely to be dismissive of health concerns when treating people with disability.¹⁵ In a sample of general practice nurses, approximately 16.5% stated they had no experience with people with disability, professionally or personally, which may impact the accessibility of the care they provide.¹⁶ Similarly, some oncology nurses report feeling less comfortable communicating with people with intellectual disability, relying on support persons with the patient to effectively identify the individual’s needs.^{17, 18}

Impact

Personal and community supports aim to optimise people with disability’s independence and participation in society. These supports are funded across different state and federal governments and can include advice, capacity building, advocacy, information, peer support, and employment services; all aimed at improving inclusion, and social and economic participation. Accessing supports across multiple government schemes, and especially following a cancer diagnosis, is complex and challenging. Access to existing supports can be disrupted by a cancer diagnosis and hospitalisation, and determining eligibility for additional supports due to cancer is difficult without a clear prognosis. This increases the challenge of navigating services, out-of-pocket costs, and dependency on informal supports (i.e., family and friends).

A comprehensive gap analysis of currently funded supports could identify opportunities to improve the availability and coverage of schemes designed to support people with disability to access cancer services and the daily living needs of individuals who acquire a disability because of cancer. This should be done in the context of the current provision of care through the NDIS and align with recommendations for foundational supports set out in this strategy. In addition, grants for targeted collaborative qualitative research could help identify the experiences and needs of people with disability. Collaboration between health and social services sectors and across government and non-government organisations is needed to identify policy and program solutions to enable people with disability to participate equally in cancer screening and care.

The gap analysis must recognise the role of non-government and disability representative organisations in supporting people with disability and the impact of short-term funding arrangements on their ability to provide sustainable support. Many organisations funded through government grant cycles are challenged by short-term funding contracts, which threaten their sustainability, the quality of the resources they produce, and their ability to foster community and peer support environments.

Evidence

A review of the NDIS found that there is a lack of ‘accessible and affordable’ supports for people under the age of 65, who are ineligible for support through the NDIS.¹⁹ A survey of working-age (18-64 years) people with disability who do not access the NDIS found that the most common reasons for not accessing support services were ineligibility for the supports they require, out-of-pocket cost, and difficulty navigating the system to access required supports.²⁰ In this survey, over 70% of respondents relied on family to provide support.²⁰

A study involving community organisations providing services to people with disability reports that funding access is inconsistent and reliant on individual-level advocacy.²⁰ This compounds a lack of publicly available information about the available supports, making the system hard to navigate.²⁰ Despite a growth in funding for disability supports in real terms, the community sector has received less funding per participant since the implementation of the NDIS.¹⁹

People accessing disability supports will often not be able to continue accessing those services and programs while in hospital or other institutionalised care.²¹ It is perceived that it is part of the health system’s universal service obligation to ensure that reasonable adjustments are made for people living with disability,²¹ even when the person may require a close supporter, such as a support worker, to be able to communicate effectively.¹⁸ If these support needs are not acknowledged and adequately provisioned for by the health service this can be a barrier to the individual’s ability to access and receive care

1. Australian Institute of Health and Welfare. People with Disability in Australia. Canberra (AU); 2020.
2. National Disability Data Asset. Identification of people with disability in linked administrative data for service use and outcomes reporting in housing 2021.
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14. Australian Institute of Health & Welfare. People with disability in Australia. Canberra: AIHW; 2024.
15. Wark S, Hussain R, Müller A, Ryan P, Parmenter T. Challenges in providing end‐of‐life care for people with intellectual disability: Health services access. Journal of Applied Research in Intellectual Disabilities. 2017;30(6):1151-9.
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19. Bonyhady B, Paul L. Working together to deliver the NDIS. Canberra (AU): Department of the Prime Minister and Cabinet; 2023.
20. Olney S, Mills A, Fallon L. The Tier 2 tipping point: access to support for working-age Australians with disability without individual NDIS funding. Melbourne (AU): Melbourne Disability Institute, University of Melbourne 2022.
21. National Disability Insurance Agency. Services if you’re in hospital: NDIA; 2021 [6 March 2024]. Available from: https://ourguidelines.ndis.gov.au/would-we-fund-it/what-does-ndis-fund#what-does-the-ndis-fund