It’s time to do more about the mental health of children with intellectual disability

Prevalence of mental health difficulties in children with an intellectual disability

Studies that have followed the development of children from birth into adulthood³ have demonstrated marked mental health inequalities between those children with intellectual disability and those without. From just three years of age, children with an intellectual disability are already significantly more likely to develop mental health difficulties, and to then have them persist into adulthood.³ Overall, children with intellectual disability are up to four times more likely than their typically developing peers to have diagnosable psychiatric conditions.¹ Indeed, the mental health difficulties of children/adolescents with an intellectual disability are believed to account for 14% of all child and adolescent mental health difficulties.¹

The high rates of mental health difficulties in children with intellectual disability have been attributed to a variety of mental health risk factors, including: ^{8, 16, 19}

• developmental (e.g. communication difficulties)
• biological (e.g. physical health conditions)
• psychological (e.g. self-worth, coping skills)
• social (e.g. problems with family functioning, social exclusion, socioeconomic disadvantage); and
• cultural (e.g. cultural and linguistic factors).

Impact of mental health difficulties in children with an intellectual disability

The added impact of mental health difficulties on the lives of children with intellectual disability is substantial. It can affect their school participation, future work participation, relationships, and overall quality of life.⁴ It also impacts on the mental wellbeing of family members, which is more heavily influenced by the severity of the child’s mental health difficulties than by the severity of their intellectual disability.^{5, 6} In addition to the human impact there is also an economic cost due to the increased support needs of those with both diagnoses.⁷

Support needs and barriers

To help manage the aforementioned mental health vulnerabilities and risk factors, children with intellectual disability and their families require support from a range of services and workforce sectors, including: ^{9, 16}

• generic (e.g. community health centres, medical centres)
• specialised (e.g. disability services, child and adolescent mental health)
• non-clinical (e.g. education); and
• family-focused (e.g. parenting or sibling programs, support groups).

Australian policy (social and public health) and service standards, however, have traditionally overlooked the mental health needs of people with intellectual disabilities. This has limited the capacity of services to effectively address this population’s complex mental health and wellbeing needs.⁷ This lack of attention has contributed to multiple interacting barriers for people with intellectual disability who need mental health support, including: ^{7, 10, 11, 16}

• a lack of investment into research of mental health assessment tools and effective treatment approaches for this population
• a lack of investment in training for mental health professionals, disability professionals and other service providers delivering supports to children with intellectual disability and their families. This appears to have fostered a lack of recognition, misdiagnosis, and inappropriate management of mental health difficulties in this population
• under-funding of the few specialist services around Australia that offer expertise in both mental health and intellectual disability
• a lack of coordination and communication between services (e.g. disability and health).

The need for workforce development

A range of national policy initiatives^{12, 13, 14} are currently underway to support whole-of-government action on the mental health of people with an intellectual disability. The National Roundtable on the Mental Health of People with Intellectual Disability^{2, 15} articulates key recommendations for action, including the development of workforce knowledge and skills in prevention and timely intervention.

Prevention and timely intervention require the individuals and services in a child’s life to: ^{2, 15, 16, 17}

• be aware that there is an increased risk and prevalence of mental health difficulties in children with intellectual disability, and that this is an issue that often reflects mental health risk factors in their broader developmental, biological, psychological, social and cultural contexts
• have the knowledge, skills and tools to identify and support children and families at risk, and to foster protective factors
• use a common language and understanding to identify, assess and support the social, emotional and behavioural needs of children with intellectual disability
• recognise and appropriately respond to early signs of mental health difficulties; and
• understand the importance of the family context in the life of a child, including which supports are essential to family functioning.

Recognising this, the Emerging Minds: National Workforce Centre for Child Mental Health will focus on building the aforementioned skills amongst professionals and organisations who work with children (aged 0-12 years) with intellectual disabilities and their families. The National Workforce Centre will seek to develop these skills through a range of capacity-building resources and activities, such as training and co-design of practices that fit into real work contexts. Currently in development is a training package for the disability workforce on prevention and early intervention in relation to child mental health, as well as practice guidance for general practitioners around supporting the wellbeing of families while they wait for a diagnostic assessment of developmental delay.

For more information about our work on this topic, send us an email.

References

1. Emerson, E., & Hatton, C. (2007). Mental health of children and adolescents with intellectual disabilities in Britain. British Journal of Psychiatry, 191(6), 493-499.

2. Department of Developmental Disability Neuropsychiatry (2018). COMMUNIQUÉ – Recommendations from the National Roundtable on the Mental Health of People with Intellectual Disability. Sydney: UNSW.

3. Emerson, E. and Einfeld, S. (2010), Emotional and behavioural difficulties in young children with and without developmental delay: a bi‐national perspective. Journal of Child Psychology and Psychiatry, 51, 583-593.

4. Einfeld, S. L., Ellis, L. A., & Emerson, E. (2011). Comorbidity of intellectual disability and mental disorder in children and adolescents: A systematic review. Journal of Intellectual & Developmental Disability, 36, 137-143.

5. Tonge, B. J., & Einfeld, S. L. (2003). Psychopathology and intellectual disability. The Australian Child to Adult Longitudinal study. In L. M. Glidden (Ed.) International Review of Research in Mental Retardation (Vol. 26, pp. 61–91). San Diego: Academic Press.

6. Neece, C.L., Blacher, J., & Baker, B.L. (2010). Impact on siblings of children with intellectual disability: The role of child behavior problems. American Association of Intellectual and Developmental Disabilities, 115(4), 291-306.

7. Department of Developmental Disability Neuropsychiatry, UNSW Sydney (2016). 3DN Strategic Plan 2016-2021. Sydney: UNSW.

8. Wallander, J.L., Dekker, M.C., & Koot, H. M. (2003). Psychopathology in children and adolescents with intellectual disability: Measurement, prevalence, course and risk. In L. M. Glidden (Ed.), International Review of Research in Mental Retardation (Vol. 36, pp. 93-134). San Diego: Academic Press.

9. White, D. (2011). Introduction. In D. Dossetor, D. White, & L. Whatson (Eds.), Mental Health of Children and Adolescents with Intellectual and Developmental Disabilities (pp. xxiii – xxix), Melbourne, Vic: IP Communications.

10. Whittle, E.L., Fisher, K.R., Reppermund, S., Lenroot, R., & Trollor, J. (2018). Barriers and enablers to accessing mental health services for people with intellectual disability: A scoping review. Journal of Mental Health Research in Intellectual Disabilities, 11(1), 69-102.

11. Trollor, J. (2014). Making mental health services accessible to people with an intellectual disability. Australian & New Zealand Journal of Psychiatry, 48(5), 395–398.

12. Council of Australian Governments. National Disability Strategy 2010-2020. Canberra: Commonwealth of Australia.

13. NSW Mental Health Commission (2014). Living Well: A Strategic Plan for Mental Health in NSW. Sydney: NSW Mental Health Commission.

14. Mavromaras, K., Moskos, M., Mahuteau, S., & Isherwood, L. (2018). Evaluation of the NDIS: Final report. Adelaide: National Institute of Labour Studies, Flinders University.

15. NSW Council for Intellectual Disability (2013). National Roundtable on the Mental Health of People with Intellectual Disability – Communiqué. Sydney: ANU.

16. Dossetor, D. (2011). Mental illness and intellectual disability: The concepts, the evidence, and the clinical skills. In D. Dossetor, D. White, & L. Whatson (Eds.) Mental Health of Children and Adolescents with Intellectual and Developmental Disabilities (pp. 219-248), Melbourne: IP Communications.

17. Costello, H., Bouras, N. and Davis, H. (2007) The role of training in improving community care staff awareness of mental health problems in people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 20, 228-235.

18. Jess, G., Torr, J., Cooper, S., Lennox, N., Edwards, N., Galea, J. and O’Brien, G. (2008). Specialist Versus Generic Models of Psychiatry Training and Service Provision for People with Intellectual Disabilities. Journal of Applied Research in Intellectual Disabilities, 21, 183-193.

19. Baassiri, H. & Carroll, L. (2011). Disabilities and multicultural issues. In D. Dossetor, D. White, & L. Whatson (Eds.), Mental Health of Children and Adolescents with Intellectual and Developmental Disabilities (pp. xxiii – xxix), Melbourne, Vic: IP Communications.