Intellectual disabilities: Addressing the mental health needs of people with ID

Position statement Last updated: Dec 2022 Published in Australia Reference: PS #109

This position statement addresses the significant challenges and unmet mental health needs for people with intellectual disability.

Purpose

The Royal Australian and New Zealand College of Psychiatrists (RANZCP) has developed this position statement as there are significant challenges and unmet mental health needs for people with intellectual disability (ID) in Australia and New Zealand. ID is a neurodevelopmental disorder with onset in the developmental period that includes deficits in intellectual and adaptive functioning.[1] The severity of ID can be highly varied, from mild to profound.[2]

Key messages

People with ID have increased rates of mental health conditions often associated with complex needs and unique obstacles to accessing care.
People with ID and mental health conditions should be considered in policy development particularly in the health, mental health, and disability sectors. An approach that integrates policy across different sectors is required to ensure service delivery is joined-up to effectively meet the needs of this population.
Specialist inpatient and community services are required for people with ID and mental health conditions.
All mainstream mental health services must be accessible to people with ID.
Improved data collection is required to inform service design and interventions for improved health outcomes.
People with ID require services to be delivered using a person-centred approach (a).

Introduction

The prevalence of people with ID is estimated to be approximately 1.8-2% of the population in Australia and New Zealand [3-5]. People with ID experience significantly higher rates of physical and mental health conditions in comparison to general population.[6, 7] However, they experience difficulty in getting their health needs met due to a failure to consider their specific needs in health and disability policy, leading to deficits in the provision of funding to support generic services or develop specialist service models.[7-9] Stigma and discrimination also play a role.[10]

Background

In Australia, people with ID experience significant disparities in health outcomes.[11] The divide between health and disability sectors has left gaps in service provision; responsibilities for caring for this vulnerable population is vague, and not sufficiently funded.[11]

In New Zealand people face similar challenges in accessing appropriate support for those with significant and complex needs especially in the provision of acute and planned respite care. [12] Te Tiriti o Waitangi (b) (the Treaty of Waitangi) places responsibilities on health services to ensure equitable outcomes for all people, including Māori and non-Māori with ID. For more information, please see the RANZCP Position Statement 107: Recognising the significance of Te Tiriti o Waitangi.

All people regardless of personal characteristics and background have the right to equitable healthcare. Both Australia and New Zealand have ratified the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and are required to meet its obligations by ensuring that people with ID have access to quality, expert general and specialist health and mental healthcare and services. Article 25 of the UNCRPD requires that healthcare should not be denied to people on the basis of disability, equal access to healthcare for people with disabilities and access to healthcare specifically tailored to an individual’s disability.[13]

Systemic considerations

Help-seeking, diagnosis and management

People with ID have significantly higher rates of mental illness than people without ID.[14, 15] Despite this, people with ID, in addition to their families/whānau (c) and carers, often report difficulties in accessing mental health services. Many people with ID are unable to do so independently and are dependent on others to take action; many also lack the financial or other resources to access health services [11, 16]. It is not uncommon for adults with ID to present for support. In cases where mental health services are received, there may be issues with the poor quality of care received.[17] Barriers to accurate diagnosis include atypical mental health presentations in people with ID, who may find it challenging to identify and describe symptoms due to impaired cognitions and communication abilities.[11] There is limited training and experience in co-occurring ID and mental illness in both the health and disability sectors, which is a significant professional barrier to meeting the health needs of people with ID.[9, 18, 19] Consistent with this hypothesis, research has identified a need for specific training of medical professionals in the assessment and management of people with ID.[18, 20, 21]

Stigma, discrimination, and abuse

Stigma and discrimination also act as barriers to equitable mental healthcare access for people with ID.[10] Historically, it was commonly assumed that people with ID could not experience mental ill health.[22] People with ID may experience stigma and discrimination in a compounded way where they belong to other population groups which also experience stigma and discrimination.[23-25] Those with a disability are more likely to be disadvantaged in another way, such as low income, participation in employment or education.[26] This compounding disadvantage is a core policy concern.[26] Where multiple challenges exist, the compounding effect can make treatment more complex. For example, Aboriginal and Torres Strait Islander peoples, Māori, and Pasifika peoples who have ID have specific cultural identities and needs that require consideration when developing optimal care and support.[27] Māori are overrepresented among people with ID and are more likely to experience barriers to accessing support.[28] It is important for Māori have access to services that recognise Te Ao Māori understandings of health and disability.[27, 28]

When the needs of people with ID and mental health conditions are not met, they may receive inadequate care in the community or be placed in facilities which are not appropriately equipped to meet their needs. Care experiences of this population have been associated with reports of abuse, neglect and violations of human rights.[19-22]. People with ID are overrepresented among victims of crime, especially sexual violence.[29]

Appropriate prescribing

Behaviours of concern in people with ID may arise from difficulties communicating.[6] It is considered best practice to manage behaviour support needs through a thorough assessment to understand the cause of the behaviour and providing psychological support.[6, 30] This includes considering the physical and environmental context, and any co-morbid medical conditions prior to prescribing medications.[6]

Evidence has shown that psychotropic medications are overprescribed to people with ID.[31, 32] Legislative and regulatory oversight is required for accountability to ensure that medications are administered by appropriately trained staff.[33] Capacity to consent to treatment must be assessed, and the person with ID and their delegated decision-maker (where applicable) must be actively engaged to consent.[15]

In the justice system

Evidence has found that people with ID are overrepresented (as both alleged perpetrators and victims) and disadvantaged in justice systems (including police interactions, courts, and prisons).[7, 34-37] In Australia, there is evidence that this overrepresentation is exacerbated for Aboriginal and Torres Strait Islander peoples with ID.[38, 39] There is also evidence that those with ID are at a higher risk of recidivism than those without ID, and that provision of adequate disability support lowers this risk.[37]

For justice systems to meet the needs of people with ID, specialist models of care are required that can integrate their medical, mental health and support needs whilst being able to manage behaviours of concern that may be present.[36] In prison, challenging behaviours can be met with harsh ‘custodial’ responses including prolonged isolation.[27, 40]. Adequate forensic health and disability services and sufficient workforce with the training to provide support to people with ID, are also required to ensure a safe, therapeutic space for those dealing with the prison system.[19, 36, 40] Providing transitional supports and planning release prior to exiting prisons is required to prevent homelessness and reduce likelihood of recidivism.[35]

Family/ whānau and carers

Parents, family members, whānau, whanaunga (d), and carers of children and adults with ID may have significant involvement or responsibility for navigating support systems and interventions.[5] This can be a challenging role, and family/whānau or carers should be supported, especially through transitional periods e.g., from child and adolescent to adult care.[5, 18] Although people with ID tend to have a shorter life expectancy than those without ID, life expectancy has been increasing for all people.[41, 42] This affects family/whānau or carers who are also ageing, and can result in a co-caring relationship, impacting the service needs of this population.[41]

Family/whānau and carers also have a role in co-designing relevant services and supports. For more information, see RANZCP Position Statement 76: Partnering with carers in mental healthcare.

Solutions

Specialist models for holistic care

There is a need for more specialist ID mental health, inpatient and community services, along with improved integration and collaboration between physical and mental health and disability services.[9, 15, 43] As well as having higher rates of mental illness, people with ID have high rates of physical health conditions, with similar barriers being encountered in accessing the required care.[44] Services must be equipped to meet the broader needs of this population. Mainstream services must consider the treatment of all people, including those with ID, as a core part of service provision.[15] There is also a role for specialist services in supporting mainstream services when working with people with ID. Mainstream services might consider local partnerships.[15]

Multi-disciplinary teams, led by specialists, provide optimal care through the development of specific treatment pathways. Coordination between the health and disability sectors is required, in addition to any other forms of support a person with ID may need including education, employment and housing needs, legal support and support for interactions with the justice system.[5, 9, 18, 43] This coordination is needed to improve role clarity between service providers.[7]

Research to increase the evidence base

People with ID often require support to access health services in which modified treatment approaches and settings are needed to account for their needs.[45] More research on adapted approaches in providing mental healthcare services to people with ID will increase the evidence base and improve service delivery.[45] Collecting data on the needs of people with ID who are living with mental health conditions can inform better service planning and health outcomes.[9, 14, 15, 43] Further training and education for health professionals in this area is also required.[43]

Policy and planning to fund equitable access

Addressing the specific needs of this population at a policy and planning level is essential in order to ensure that the appropriate adjustments are made at a service level, enabling equitable access. Having ratified Article 25 of the UNCRPD, both Australia and New Zealand have agreed to the right of people with disabilities to participate in policy and practice development processes which affect them.[46]

Funding for mental health service provision must be based on need. An Australian study found that people with ID use public metal health services at significantly higher rates than the general population, and that the per-person costs and care needs were higher.[14] This indicates that the specialist needs of people with ID are a core consideration in policy and planning for mental health systems, including data collection.[14] Policy and planning designed for the general population is unlikely to enable equal access for people with ID.[44]

The role of psychiatrists

The role of a psychiatrist, across all jurisdictions and contexts, is to use their specialist skills and medical expertise to achieve the highest quality of care, in partnership with their family/whānau or carers and other services. By virtue of their training, psychiatrists are able to develop an understanding of complex presentations founded on an understanding on the medical, psychological, social and developmental needs of an individual.[47] Psychiatrists develop informed treatment and management plans that includes the provision of pharmacological and psychological therapeutic interventions, while also accounting for legal and ethical issues.[47] Psychiatrists can play an important role in ensuring that people with ID have access to mental healthcare. Both ID and mental health conditions have significant impacts and the symptoms and complex and varied needs of this population are challenging to address.[2] Ensuring equal access to mental healthcare is important and psychiatrists are encouraged to take an inclusive, person-centred approach to care.[2, 21] Adapting practice may be required.[15, 18, 21, 48] It may be necessary to work with multidisciplinary teams.[15] This will ensure that the person’s health, education, social, disability, and justice/legal support needs of people are met.

Specialist skills are needed to best meet the needs of people with ID in mainstream services. Child and adolescent psychiatrists may gain experience working with children with ID during their training. It is less common for psychiatrists in training to work with adults with ID, resulting in less experience and confidence working with those with ID. Increased experience via education, training, and continuing professional development is needed for improved understanding of how to work with people with ID. Psychiatrists often are required to capture the everyday challenges a patient with ID experiences as evidence for report writing required by national disability schemes such as the National Disability Insurance Scheme in Australia or in New Zealand, the Whaikaha (Ministry of Disabled People) or the Accident Compensation Corporation where relevant. Without a strong understanding of these challenges, the report writing and provision of evidence suffers, limiting the ability to advocate for the benefits and supports required by the patient with ID.

Psychiatrists can play an important role in advocating for patients and are equipped to provide clinical leadership, recognising the complexity of individual clinical presentations in assessment and direct provision of therapy. For more information on the role of psychiatrists, please see RANZCP Position Statement 80: The role of the psychiatrist in Australia and New Zealand.

Recommendations

A system which addresses the mental health needs of people with ID will:

Recognise people with ID and complex needs in all policy development, particularly in the health, mental health, and disability sectors. An integrated approach working across these sectors is key to improving diagnosis and outcomes.
Provide adequate, dedicated funding to ensure appropriate policy implementation.
Collect data on the needs of people with ID who are living with mental health conditions to support better service planning and better health outcomes.
Include clinical expert representation on relevant advisory bodies and consider how to include lived experience representation, including in the peer workforce.
Ensure that all mainstream health, education, social, disability, and justice services can meet the needs of people with ID in planning, service delivery and outcomes. Specialist inpatient and community services are required for people with ID and mental health conditions.
Educate and train health providers in the mental health needs of people with ID.

Footnotes

a) While there may be varied interpretations of a ‘person-centred approach’, the RANZCP refers to an approach to care which is compassionate, responsive to the needs of the person receiving care, and based on their values and preferences. This may involve taking a family, community, or whānau-centred approach, depending on the values and preferences of the person receiving care.
b) Te Tiriti o Waitangi or the Treaty of Waitangi is Aotearoa’s founding document outlining how Māori and the British Crown work together in partnership.
c) Whānau (pronunciation: fa:no) is a Māori word used to describe an extended family group spanning three to four generations. The whānau continues to form the basic unit of Māori society (Rāwiri Taonui).
d) Whanaunga is a Māori word for relative or kin. It has a wider spiritual and emotional meaning that binds an individual to their marae (meeting grounds) and to their tīpuna/tupuna (ancestors).

References

1. Diagnostic and Statistical Manual of Mental Disorders (5th ed): American Psychiatric Association; 2013
2. Accessible Mental Health Services for People with an Intellectual Disability: A guide for providers: University of New South Wales Department of Developmental Disability
Neuropsychiatry; 2014 [Available from: https://www.3dn.unsw.edu.au/sites/default/files/documents/Accessible-Mental-Health-Services-for-People-with-a-ID-A-Guide-for-Providers.pdf].
3. Australian Bureau of Statistics. How many people have intellectual disability? ; 2012.
4. Statistics New Zealand. 2013 Census Quick Stats about culture and identity 2013 [Available from: http://archive.stats.govt.nz/Census/2013-census/profile-and-summary-reports/quickstats-culture-identity.aspx?_ga=2.183312294.1818152984.1547519095-884721913.1540878428].
5. National Roadmap for Improving the Health of People with Intellectual Disability: Australian Government Department of Health; 2021 [Available from: https://www.health.gov.au/sites/default/files/documents/2021/08/national-roadmap-for-improving-the-health-of-people-with-intellectual-disability.pdf].
6. Trollor J, Salomon, C., Franklin, C. Prescribing psychotropic drugs to adults with an intellectual disability. Australian Prescriber. 2016;39(4).
7. Trollor J. Making mental health services accessible to people with an intellectual disability. Australian & New Zealand Journal of Psychiatry. 2014;48(5):395-8.
8. Trollor J. Making mental health services accessible to people with an intellectual disability Australian & New Zealand Journal of Psychiatry. 2014;48(5):395-8.
9. Intellectual disability: 10-year mental health plan technical paper: State of Victoria, Department of Health & Human Services 2015 [Available from: https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&ved=2ahUKEwjGkMPttpH0AhVMcCsKHVt0A6kQFnoECAMQAQ&url=https%3A%2F%2Fwww.mhvic.org.au%2Fimages%2Fdocuments%2F10_year_plan_for_mental_health%2FIntellectual_disability_technical_paper_mental_health_plan.doc&usg=AOvVaw1Pvt6DzA9znKlhDZ7K2rGV.
10. Ditchman N, Werner, S., Kosyluk, K., Jones, N., Elg, B., & Corrigan, P. W. Stigma and intellectual disability: Potential application of mental illness research. Rehabilitation Psychology. 2013;58(2):206-16.
11. Evans E, Howlett S, Kremser T, Simpson J, Kayess R, Trollor J. Service development for intellectual disability mental health: a human rights approach. Journal of Intellectual Disability Research. 2012;56(11):1098-109.
12. Synergia. Respite in New Zealand: we must do better. 2019.
13. Article 25: Convention on the Rights of Persons with Disabilities United Nations; [Available from: https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-25-health.html.
14. Srasuebkul P, Cvejic, R., Heintze, T., Reppermund, S. and Trollor, J. N. Public mental health service use by people with intellectual disability in New South Wales and its costs. Medical Journal of Australia. 2021;215(7):325-31.