IDEAS home Printed from https://ideas.repec.org/a/gam/jijerp/v21y2024i3p299-d1351130.html

The Healthcare and Societal Costs of Familial Intellectual Disability

Author

Listed:
  • Deborah Schofield

    (GenIMPACT, Macquarie University, Sydney, NSW 2109, Australia)

  • Rupendra Shrestha

    (GenIMPACT, Macquarie University, Sydney, NSW 2109, Australia)

  • Owen Tan

    (GenIMPACT, Macquarie University, Sydney, NSW 2109, Australia)

  • Katherine Lim

    (GenIMPACT, Macquarie University, Sydney, NSW 2109, Australia)

  • Radhika Rajkumar

    (GenIMPACT, Macquarie University, Sydney, NSW 2109, Australia)

  • Sarah West

    (GenIMPACT, Macquarie University, Sydney, NSW 2109, Australia)

  • Jackie Boyle

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

  • Lucinda Murray

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

  • Melanie Leffler

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

  • Louise Christie

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

  • Morgan Rice

    (GenIMPACT, Macquarie University, Sydney, NSW 2109, Australia)

  • Natalie Hart

    (GenIMPACT, Macquarie University, Sydney, NSW 2109, Australia)

  • Jinjing Li

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

  • Robert Tanton

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

  • Tony Roscioli

    (New South Wales Health Pathology Genomics, Prince of Wales Hospital, Randwick, Sydney, NSW 2031, Australia
    Centre for Clinical Genetics, Sydney Children’s Hospital, Randwick, Sydney, NSW 2031, Australia
    Prince of Wales Clinical School, Faculty of Medicine, University of New South Wales, Sydney, NSW 2052, Australia
    Neuroscience Research Australia, University of New South Wales, Randwick, Sydney, NSW 2031, Australia)

  • Mike Field

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

Suggested Citation

  • Deborah Schofield & Rupendra Shrestha & Owen Tan & Katherine Lim & Radhika Rajkumar & Sarah West & Jackie Boyle & Lucinda Murray & Melanie Leffler & Louise Christie & Morgan Rice & Natalie Hart & Jinj, 2024. "The Healthcare and Societal Costs of Familial Intellectual Disability," IJERPH, MDPI, vol. 21(3), pages 1-13, March.
  • Handle: RePEc:gam:jijerp:v:21:y:2024:i:3:p:299-:d:1351130
    as

    Download full text from publisher

    File URL: https://www.mdpi.com/1660-4601/21/3/299/pdf
    Download Restriction: no

    File URL: https://www.mdpi.com/1660-4601/21/3/299/
    Download Restriction: no
    ---><---

    References listed on IDEAS

    as
    1. Productivity Commission, 2011. "Disability Care and Support," Inquiry Reports, Productivity Commission, Government of Australia, volume 0, number 54, January.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. John Walsh & Sarah Johnson, 2013. "Development and Principles of the National Disability Insurance Scheme," Australian Economic Review, The University of Melbourne, Melbourne Institute of Applied Economic and Social Research, vol. 46(3), pages 327-337, September.
    2. Nguyen, Ha Trong & Connelly, Luke Brian, 2014. "The effect of unpaid caregiving intensity on labour force participation: Results from a multinomial endogenous treatment model," Social Science & Medicine, Elsevier, vol. 100(C), pages 115-122.
    3. Henry Ergas, 2013. "National Disability Insurance Scheme Funding: The Case for Hypothecation," Australian Economic Review, The University of Melbourne, Melbourne Institute of Applied Economic and Social Research, vol. 46(3), pages 338-344, September.
    4. Burgess, Teresa & Braunack-Mayer, Annette & Crawford, Gregory B. & Beilby, Justin, 2014. "Australian health policy and end of life care for people with chronic disease: An analysis," Health Policy, Elsevier, vol. 115(1), pages 60-67.
    5. Kirsten Lieshout & Joanne Oates & Anne Baker & Carolyn A. Unsworth & Ian D. Cameron & Julia Schmidt & Natasha A. Lannin, 2020. "Burden and Preparedness amongst Informal Caregivers of Adults with Moderate to Severe Traumatic Brain Injury," IJERPH, MDPI, vol. 17(17), pages 1-12, September.
    6. Kaambwa, Billingsley & Lancsar, Emily & McCaffrey, Nicola & Chen, Gang & Gill, Liz & Cameron, Ian D. & Crotty, Maria & Ratcliffe, Julie, 2015. "Investigating consumers' and informal carers' views and preferences for consumer directed care: A discrete choice experiment," Social Science & Medicine, Elsevier, vol. 140(C), pages 81-94.
    7. Craft Amanda & Taylor Sharon & Gaffney Alicia & Wagland Suzanne, 2018. "Retirement Outcomes for Female Primary Carers in Australia: A Literature Review," Financial Planning Research Journal, Sciendo, vol. 4(2), pages 69-91.
    8. Souza, Flavio & Duff, Gordon & Swait, Joffre, 2021. "“Whose plan is it?” understanding how the goal pursuit of consumers and carers influence choices in the australian disability sector," Journal of choice modelling, Elsevier, vol. 40(C).
    9. Andrew Beer & Lyrian Daniel & Emma Baker & Laurence Lester, 2020. "The Shifting Risk of Homelessness among Persons with a Disability: Insights from a National Policy Intervention," IJERPH, MDPI, vol. 17(18), pages 1-10, September.
    10. repec:osf:socarx:48ujp_v1 is not listed on IDEAS
    11. Ross Williams, 2013. "Introduction," Australian Economic Review, The University of Melbourne, Melbourne Institute of Applied Economic and Social Research, vol. 46(3), pages 325-326, September.
    12. Kitty-Rose Foley & Sonya Girdler & Jenny Bourke & Peter Jacoby & Gwynnyth Llewellyn & Stewart Einfeld & Bruce Tonge & Trevor R Parmenter & Helen Leonard, 2014. "Influence of the Environment on Participation in Social Roles for Young Adults with Down Syndrome," PLOS ONE, Public Library of Science, vol. 9(9), pages 1-11, September.
    13. Brackertz, Nicola & Huang, Donna & Davison, Jim & Hayward, Richard Donald, 2018. "Housing, homelessness and mental health: towards systems change," SocArXiv 48ujp, Center for Open Science.
    14. Jonathan Karnon & Brita Pekarsky, 2020. "Should Health Economic Evaluations Undertaken from a Societal Perspective Include Net Government Spending Multiplier Effects?," Applied Health Economics and Health Policy, Springer, vol. 18(4), pages 467-475, August.
    15. Georgia van Toorn, 2021. "Neoliberalism’s friends, foes and fellow travellers: What can radical feminist and disability perspectives bring to the policy mobilities approach?," Environment and Planning A, , vol. 53(4), pages 723-740, June.
    16. Duncan McVicar & Roger Wilkins, 2013. "Explaining the Growth in the Number of Recipients of the Disability Support Pension in Australia," Australian Economic Review, The University of Melbourne, Melbourne Institute of Applied Economic and Social Research, vol. 46(3), pages 345-356, September.
    17. Andrew Beer & Emma Baker & Laurence Lester & Lyrian Daniel, 2019. "The Relative Risk of Homelessness among Persons with a Disability: New Methods and Policy Insights," IJERPH, MDPI, vol. 16(22), pages 1-12, November.
    18. Caitlyn S. White & Erica Spry & Emma Griffiths & Emma Carlin, 2021. "Equity in Access: A Mixed Methods Exploration of the National Disability Insurance Scheme Access Program for the Kimberley Region, Western Australia," IJERPH, MDPI, vol. 18(17), pages 1-13, August.
    19. Syed Afroz Keramat & Rubayyat Hashmi & Bolaji Samson Aregbeshola & Tracy Comans, 2023. "Informal Caregiving Provision for Disabled or Elderly in the Families and Work Productivity: Evidence from 11 Waves of an Australian Population-Based Cohort," PharmacoEconomics, Springer, vol. 41(9), pages 1117-1136, September.
    20. Kathy Boschen & Caroline Phelan & Sharon Lawn, 2022. "NDIS Participants with Psychosocial Disabilities and Life-Limiting Diagnoses: A Scoping Review," IJERPH, MDPI, vol. 19(16), pages 1-23, August.
    21. Muir, Kristy & Michaux, Fabienne & Sharam, Andrea & Flatau, Paul & Meltzer, Ariella & Moran, Michael & Heaney, Richard & North, Gill & Webb, Eileen & Mason, Chris, 2018. "Inquiry into social impact investment for housing and homelessness outcomes," SocArXiv fcjbg, Center for Open Science.

    More about this item

    Keywords

    ;
    ;
    ;
    ;
    ;

    Statistics

    Access and download statistics

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:gam:jijerp:v:21:y:2024:i:3:p:299-:d:1351130. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: MDPI Indexing Manager (email available below). General contact details of provider: https://www.mdpi.com .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.