The Healthcare and Societal Costs of Familial Intellectual Disability

Author:

Schofield Deborah1ORCID,Shrestha Rupendra1,Tan Owen1,Lim Katherine1ORCID,Rajkumar Radhika1,West Sarah1,Boyle Jackie2,Murray Lucinda2,Leffler Melanie2,Christie Louise2,Rice Morgan1,Hart Natalie1,Li Jinjing3,Tanton Robert3,Roscioli Tony4567,Field Mike3

Affiliation:

1. GenIMPACT, Macquarie University, Sydney, NSW 2109, Australia

2. Genetics of Learning Disability (GoLD) Service, Newcastle, NSW 2298, Australia

3. National Centre for Social and Economic Modelling (NATSEM), Institute for Governance and Policy Analysis, University of Canberra, Canberra, ACT 2617, Australia

4. New South Wales Health Pathology Genomics, Prince of Wales Hospital, Randwick, Sydney, NSW 2031, Australia

5. Centre for Clinical Genetics, Sydney Children’s Hospital, Randwick, Sydney, NSW 2031, Australia

6. Prince of Wales Clinical School, Faculty of Medicine, University of New South Wales, Sydney, NSW 2052, Australia

7. Neuroscience Research Australia, University of New South Wales, Randwick, Sydney, NSW 2031, Australia

Abstract

Most of the studies on the cost of intellectual disability are limited to a healthcare perspective or cohorts composed of individuals where the etiology of the condition is a mixture of genetic and non-genetic factors. When used in policy development, these can impact the decisions made on the optimal allocation of resources. In our study, we have developed a static microsimulation model to estimate the healthcare, societal, and lifetime cost of individuals with familial intellectual disability, an inheritable form of the condition, to families and government. The results from our modeling show that the societal costs outweighed the health costs (approximately 89.2% and 10.8%, respectively). The lifetime cost of familial intellectual disability is approximately AUD 7 million per person and AUD 10.8 million per household. The lifetime costs to families are second to those of the Australian Commonwealth government (AUD 4.2 million and AUD 9.3 million per household, respectively). These findings suggest that familial intellectual disability is a very expensive condition, representing a significant cost to families and government. Understanding the drivers of familial intellectual disability, especially societal, can assist us in the development of policies aimed at improving health outcomes and greater access to social care for affected individuals and their families.

Funder

National Health and Medical Research Council

Publisher

MDPI AG

Reference52 articles.

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4. Australian Government Department of Health and Aged Care (2023, November 10). National Roadmap for Improving the Health of People with Intellectual Disability, Available online: https://www.health.gov.au/resources/publications/national-roadmap-for-improving-the-health-of-people-with-intellectual-disability?language=en.

5. Disparities in Unmet Service Needs Among Adults with Intellectual and Other Developmental Disabilities;Burke;J. Appl. Res. Intellect. Disabil.,2017

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