Health outcomes for people with intellectual disability

• Life expectancy can be 25 years less than the general population.^1-3
• Age-specific mortality rates from a range of health problems are higher, as they are often undiagnosed or poorly managed.^4,5
• People with intellectual disability are likely to have one or more health conditions.
• Across all age groups are more at risk of developing mental illness than the general population.
• Frequently, mental health conditions are under recognised or inadequately managed.

The poorer health of people with intellectual disability has direct system costs due to high numbers of separations per person and a longer average length of stay. The number of separations (death, discharge, sign-out or transfer) is the most commonly used measure of the use of hospital services rather than admissions.

Access to the health system

• People with intellectual disability have less access to, and benefit from, public or preventive health programs.
• There is less access to primary and secondary disease prevention.²
• There is greater use of hospital emergency departments.
• People with intellectual disability experience longer and repeated hospital admissions.⁶

I think they avoid dealing with him because they don’t have much experience with people with disabilities.

Barriers to care

There are three health barriers faced by people with intellectual disability.⁷

• They may not understand something is wrong with their health, not know what to do, or where to go for help.
• Carers and disability support staff may not recognise the symptoms, understand the consequences of, or know who to contact about health concerns.
• Health professionals may lack knowledge and experience in working with people with intellectual disability.

These barriers mean that having an intellectual disability is likely to result in poorer health. For some, a specific health event may lead to reduced intellectual functioning, exacerbation of anxiety and mental illness or challenging behaviour.

Delivering care

Delivery of quality services for people with intellectual disability in mainstream health settings can be challenging for many reasons. There are often communication challenges between health professionals and people with intellectual disability. There can be a lack of knowledge on the part of health workers about how to best meet their needs.

Working effectively with a person with intellectual disability can minimise opposition to physical examinations, tests or procedures and reduce resistance to attending or staying for medical appointments.²

There is support available to improve the health services we offer and, in turn, the person’s experience of health service delivery and ultimately, of health outcomes.

The Essentials provides support to health services to improve the health outcomes of people with intellectual disability in the context of the requirement for Disability Inclusion Action Planning, the review of the National Disability Insurance Scheme (NDIS) and the findings of the Royal Commission into the Violence, Abuse, Neglect and Exploitation of People with Disability.^8-12

Access to quality healthcare is a fundamental human right for everyone and this is recognised in the UN Convention on the Rights of People with Disability.¹³

Government disability strategy and planning

Australia’s Disability Strategy 2021–2031 is a national framework that all governments in Australia have signed up to.¹⁴ It sets out a plan for continuing to improve the lives of people with disability in Australia over the next ten years.

Each Australian state and territory has developed disability inclusion action planning and regulation which recognises the rights of people with disability and ensures that they can access mainstream services and be part of the community. Disability action plans describe the steps states will take to improve access to health services health services for people with disability and improve equitable access to employment. They aim to elevate the voices of people with disability in planning and designing health services and facilities to promote improved inclusion, improved systems and processes and inclusive attitudes and behaviours.

The Essentials contains suggestions and strategies to support improved health outcomes for people with intellectual disability. It aligns with and supports state and national disability inclusion action planning.

The National Disability Insurance Scheme

As an insurance scheme, the NDIS mandates support for eligible Australians with permanent and significant disability based on their individual needs and preferences.

The use of the tools within the Essentials will strengthen and support strong collaborative action with the NDIS and lead to better outcomes all round as a healthy person will have lower disability support needs and a person with good disability support will be healthier.

The importance of mainstream and specialised health services

The ongoing reform initiatives, such as disability inclusion action planning and NDIS, recognise the continuing critical contribution of health services to the comprehensive care of people with intellectual disability.^8-11,15 They acknowledge and emphasise the need to continue to provide a range of mainstream health services across primary, secondary and tertiary settings.

The 2023 Royal Commission into the Violence Abuse Neglect and Exploitation of people with disability has delivered 222 recommendations on how to improve laws, policies, structures and practices to ensure a more inclusive and just society that supports the independence of people with disability and their right to live free from violence, abuse, neglect and exploitation.¹²

Appropriate and equitable access to mainstream health services is a key commitment for state health services. Service capability is underpinned by supportive policy, appropriate culture and practice along with training and development opportunities. Mainstream services include those delivered in the community, emergency departments, ambulatory clinics and inpatient settings.

An essential cornerstone of comprehensive, evidence based and networked clinical services is access to centres of additional expertise and specialisation. Tertiary hubs and related hub-and-spoke arrangements are well described in a range of clinical domains and jurisdictions.

The capacity to escalate care through appropriate channels and defined pathways for advice or referral are key to integrated care and delivery of 'right care, right place, and right time'. Channels ensure professional support, continuing clinical education and maintenance of quality across the system.

Published evidence reviewing health service models of care for people with intellectual disability supports the role of tertiary clinical centres. Local evidence gathered in the development of the Essentials reinforces the need for access to specialised expertise and support.

Examples of expertise include:

• aspects of early childhood and developmental delay
• complex illness and syndromes involving intellectual disability
• Aboriginal or culturally and linguistically diverse populations
• transition between paediatric and young adult healthcare
• mental health comorbidities and challenges for people with intellectual disability.

Health services have an important role in diagnosis and assessment and in providing leadership in care coordination and continuing guidance.

Despite variations in service models, there are common elements of a specialised health service to support mainstream health services.

• Multidisciplinary care is delivered by a team of clinicians with particular interest and expertise in the healthcare of people with intellectual disability.
• Consumer co-design, engagement and support is central and consistent with appropriate inclusion of people with intellectual disability.
• Pathways and channels to escalation for either advice or referral are clearly identified and practiced.
• Networked integration into a comprehensive approach to appropriate care is in place.
• Feedback to and support of mainstream health services occurs.
• Research towards and application of best available clinical evidence are pursued.

The distribution and service configuration of tertiary centres is recognised to be challenging. It is limited by the number of trained professionals available to the system. The challenge of access to such expertise in rural settings may be addressed by appropriate partnership arrangements with centres in metropolitan health districts.

NSW has developed a hub and spoke model of specialist intellectual disability health services across the state. It also has two tertiary statewide intellectual disability mental health centres of expertise, one paediatric and one adult.

Trauma-informed care

Trauma is defined as: “an event, a series of events or a set of circumstances that is experienced by an individual as physically or emotionally harmful and has lasting adverse effects on a person’s mental, physical, social, emotional or spiritual well-being”.¹⁶

The effects can be passed down through generations.

The effects of trauma in the lives of people with intellectual disability have been highlighted in the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.¹²

Trauma-informed care is an approach to service delivery based on an understanding of the ways trauma affects people’s lives, their service needs and service usage. It involves consideration of safety, choice, collaboration, trust and empowerment. It emphasises safety and minimises re-traumatisation for both service providers and people accessing services.

Trauma-informed care is associated with:

• improved patient-reported outcomes and coping skills
• improved safety and wellbeing for staff.

Characteristics of trauma-informed care in practice

• Treating all people with intellectual disability and carers with empathy and respect.
• Taking the time to engage with people with intellectual disability to build safety.
• Asking questions and listening to understand their experience.
• Providing access to space, resources or supports.
• Providing choice and collaboration wherever possible.
• Assuming people are doing the best they can with the resources they have.

Resources

• Trauma-informed care framework
• Building collaborative cultures of care within NSW mental health services
• Trauma-informed care and practice in mental health services

Co-design in health services

Co‑design is becoming a common global practice in health service delivery as organisations and leaders recognise the value of involving people with a lived experience of intellectual disability.

Co-design goes beyond the more traditional partnering methods because it enables consumers to become equal partners in the improvement process for health services. This means improvements reflect their needs and preferences; not just those of people working within the health system.

The application of co-design methods requires investment in skills, attitudes and behaviour change, at individual and organisational levels, to shift power dynamics and drive real change. It will sometimes involve working with participant support workers as well.

Resources

• Co-design toolkit
• University of NSW. Guidelines: Co-production in action

Virtual care

When clinically appropriate, virtual care can be used to bring together people from multiple locations. It provides an easy way to connect and share information with patients, families, carers and staff.

Virtual care is designed to complement and enhance access to in-person care. As well as offering more choice, virtual care may sometimes be the best option to meet a patient’s needs.

Resources

• Virtual care

References

1. Council for Intellectual Disability. Position Statement on Health. Sydney: Council for Intellectual Disability; 2022 [cited 19 Sep 2023].
2. NSW Ombudsman. Report of Reviewable Deaths in 2014 and 2015, 2016 and 2017 - Deaths of people with disability in residential care. Sydney: NSW Ombudsman; 2018 [cited 19 Sep 2023].
3. Salomon C, Trollor J. A scoping review of the causes and contributors to the deaths of people with disability in Australia. Sydney: Department of Developmental Disability Neuropsychiatry UNSW; 2019.
4. Kinnear D, Morrison J, Allan L, et al. Prevalence of physical conditions and multimorbidity in a cohort of adults with intellectual disabilities with and without Down syndrome: cross-sectional study. BMJ Open 2018 Feb 5;8(2):e018292.
5. Trollor JN, Salomon C, Franklin C. Prescribing psychotropic drugs to adults with an intellectual disability. Aust Prescr 2016 Aug;39(4):126-130.
6. Reppermund S, Heintze T, Srasuebkul P, et al. Health and wellbeing of people with intellectual disability in New South Wales, Australia: A data linkage cohort. BMJ Open. 2019;9:e031624. DOI: 10.1136/bmjopen-2019-031624
7. Taggart L, McKendry L. Developing a mental health promotion booklet for young people with learning disabilities. Learn Disabil Pract. Dec 2009 12(10):27-32. DOI: 10.7748/ldp2009.12.12.10.27.c7423
8. NSW Ministry of Health. Disability inclusion action. Sydney: NSW Ministry of Health; 2022 [cited 5 Mar 2024].
9. Victoria Dept of Families, Fairness and Housing. Inclusive Victoria: state disability plan (2022–2026). Victoria: State Government of Victoria; 2024 [cited 5 Mar 2024].
10. Western Australia Dept of Health. Disability Access and Inclusion Plan. Perth; WA Dept of Health; 2016 [cited 5 Mar 2023].
11. National Disability Insurance Scheme Review. Working together to deliver the NDIS. Canberra: Australian Government; 2023 [cited 5 mar 2024].
12. Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Final report. Canberra: Australian Government; 2023 [cited 5 Mar 2024].
13. United Nations Office of the High Commissioner for Human Rights. Convention on the Rights of People with Disability. Geneva: OHCHR; 2008 [cited 5 Mar 2024].
14. Disability Gateway. Australia’s Disability Strategy Hub. Canberra; Australian Government; [n.d.] [cited 5 Mar 2024].
15. Australian Dept of Health and Aged Care. National Roadmap for Improving the Health of People with Intellectual Disability. Canberra: Australian Government; 2023 [cited 5 Mar 2024].
16. Substance Abuse and Mental Health Services Administration. SAMHSA’s concept of trauma and guidance for a trauma-informed approach. Rockville: SAHMSA; 2014 [cited 19 Sep 2023].