Intellectual disability and autism: socioeconomic impacts of informal caring, projected to 2030

Deborah Schofield, Melanie J. B. Zeppel, Robert Tanton, J. Lennert Veerman, Simon J. Kelly, Megan E. Passey, Rupendra N. Shrestha*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

9 Citations (Scopus)


Background: Intellectual disability and autism spectrum disorder (ASD) influence the interactions of a person with their environment and generate economic and socioeconomic costs for the person, their family and society.

Aims: To estimate costs of lost workforce participation due to informal caring for people with intellectual disability or autism spectrum disorders by estimating lost income to individuals, lost taxation payments to federal government and increased welfare payments.

Method: We used a microsimulation model based on the Australian Bureau of Statistics' Surveys of Disability, Ageing and Carers (population surveys of people aged 15-64), and projected costs of caring from 2015 in 5-year intervals to 2030.

Results: The model estimated that informal carers of people with intellectual disability and/or ASD in Australia had aggregated lost income of AU310 million, lost taxation of AU-100 million and increased welfare payments of AU-204 million in 2015. These are projected to increase to AU-432 million, AU-129 million and AU-254 million for income, taxation, and welfare respectively by 2030. The income gap of carers for people with intellectual disability and/or ASD is estimated to increase by 2030, meaning more financial stress for carers.

Conclusions: Informal carers of people with intellectual disability and/or ASD experience significant loss of income, leading to increased welfare payments and reduced taxation revenue for governments; these are all projected to increase. Strategic policies supporting informal carers wishing to return to work could improve the financial and psychological impact of having a family member with intellectual disability and/or ASD.Declaration of interest None.

Original languageEnglish
Pages (from-to)654-660
Number of pages7
JournalBritish Journal of Psychiatry
Issue number5
Publication statusPublished - 1 Nov 2019


  • autism spectrum disorders
  • carers
  • economics
  • Intellectual disability
  • labour force productivity


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