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IDMOD: An Australian microsimulation model of lifetime economic and social factors in familial intellectual disability

  1. Deborah J Schofield  Is a corresponding author
  2. Owen Tan  Is a corresponding author
  3. Rupendra N Shrestha
  4. Radhika Rajkumar
  5. Sarah West
  6. Morgan Rice
  7. Nadine Kasparian
  8. Jackie Boyle
  9. Louise Christie
  10. Melanie Leffler
  11. Lucinda Murray
  12. Robert Tanton
  13. Jinjing Li
  14. Tony Roscioli
  15. Michael Field
  1. GenIMPACT: Centre for Economic Impacts of Genomic Medicine, Macquarie Business School, Macquarie University, Australia
  2. Royal Prince Alfred Hospital, Australia
  3. Heart Centre for Children, The Sydney Children’s Hospitals Network, Australia
  4. Discipline of Paediatrics, School of Women’s & Children’s Health, UNSW Medicine, The University of New South Wales, Australia
  5. Genetics of Learning Disability (GoLD) Service, Australia
  6. National Centre for Social and Economic Modelling (NATSEM), Institute for Governance and Policy Analysis, University of Canberra, Australia
  7. Neuroscience Research Australia, University of New South Wales, Australia
  8. Sydney Children’s Hospital, Australia
Research article
Volume 13(1) Spring 2020
Cite this article as: D. J Schofield, O. Tan, R. N Shrestha, R. Rajkumar, S. West, M. Rice, N. Kasparian, J. Boyle, L. Christie, M. Leffler, L. Murray, R. Tanton, J. Li, T. Roscioli, M. Field; 2020; IDMOD: An Australian microsimulation model of lifetime economic and social factors in familial intellectual disability; International Journal of Microsimulation; 13(1); 52-66. doi: 10.34196/ijm.00212
2 figures and 3 tables

Figures

Figure 1
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Structure of IDMOD
Figure 2
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Data collected from “retrospective” and “prospective” cohorts will be used to assess the lifetime burden associated with ID without the WGS, and with WGS, respectively.

Tables

Table 1
Services used, and costs data collected in the EPIC-ID questionnaire
Category Item Cost (annual unless specified otherwisea) Perspective Data source Note
Health system
Inpatient AR-DRG Government NSW Admitted Patient Data Collection
Emergency department URG Government NSW Emergency Department Data Collection
Outpatient consultation Government Medicare Benefits Schedule data
Naturopatha $107 per session OOP (Cancer Council Australia, 2018)
Prescription medication Government Pharmaceutical Benefits Scheme data
Supplements and OTC medication Self-reported OOP
Supported accommodation & respite
Residential care $16,973 Income and assets mean tested (no more than $$27,754 per year) Government (Australian Government Department of Health, 2017)
Residential care-basic daily fee $18,038 Government (Australian Government Department of Health, 2017) Basic daily fee is paid out of pocket for over 65 residents. Fee for under 65 disabled residents is covered by the NDIS.
Specialist Disability Accommodationa $4,452-$59,375 Government (National Disability Insurance Agency, 2017) Cost of accommodation is subject to patients’ needs (accessibility, on-site overnight assistance, or high level of physical access provision with high support need) and number of people sharing the accommodation.
Supported Independent Livinga $1,727-$4,951 per week Government (National Disability Insurance Agency, 2016) Cost of supported independent living depends on support needed to undertake household tasks and/or self-care activities.
Respite care $13,024 Government (Australian Institute of Health and Welfare, 2017)
Rent subsidy Market rent less 25%–30% of household income Government (Department of Communities and Justice NSW, 2019) Eligibility for government subsidy is income tested.
Welfare
Disability support pension (under 20 years and living independent) $13,335 Government (Australian Government Social Security Guide, 2018a)
Disability support pension (under 18 years and living at home) $8,104 Government (Australian Government Social Security Guide, 2018a)
Disability support pension (18–20 years and living at home) $9,393 Government (Australian Government Social Security Guide, 2018a)
Disability support pension (above 20 years old) $23,254 Government (Australian Government Social Security Guide, 2018a)
Mobility allowance standard rate $2,493 Government (Australian Government Social Security Guide, 2018b)
Mobility allowance higher rate $3,487 Government (Australian Government Social Security Guide, 2018b)
Supported employment $5,031 Government (Australian Institute of Health and Welfare, 2017)
Education
Primary student-Supplementary level support $16,107 Government (Department of Education, 2019)
Primary student-Substantial level support $27,903 Government (Department of Education, 2019)
Primary student-Extensive level support $46,733 Government (Department of Education, 2019)
Secondary student-Supplementary level support $18,958 Government (Department of Education, 2019)
Secondary student-Substantial level support $30,789 Government (Department of Education, 2019)
Secondary student-Extensive level support $49,604 Government (Department of Education, 2019)
Early intervention classa $185 per hour Government (National Disability Insurance Agency, 2018)
Aids and modifications Self-reported OOP/Government EPIC-ID questionnaire recorded costs and subsidies received for aids and modifications, including nappies, special diet, mobility aids (eg, wheelchair), lifting/hoisting apparatus, peg feeding equipment, visual, hearing and communication aids, orthotics, home modifications (eg, stairs, bedroom), and vehicle modifications.
Carer’s costs
Welfare (eg, carer payment, and carer allowance) Self-reported Government Carer payment and carer allowance are obtained from EPIC-ID questionnaire response.

  1. AR-DRG = Australian Refined-Diagnosis Related Group; OOP = Out-of-pocket; OTC = Over-the-counter; URG = Urgency Related Group;

  2. a

    Costs that were not reported in the year of 2017 were adjusted at an inflation rate of 3% per annum.

Table 2
Example of education distribution in Australian Bureau of Statistics 2016 Census data
Age Sex State/Territory Highest qualification attained Proportion Upper bound Lower bound
25–29 years Male New South Wales Postgraduate degree, graduate diploma/graduate certificate 0.074 0.000 0.074
25–29 years Male New South Wales Bachelor degree 0.234 0.074 0.308
25–29 years Male New South Wales Advanced diploma/diploma 0.212 0.308 0.520
25–29 years Male New South Wales Certificate III / IV 0.079 0.520 0.598
25–29 years Male New South Wales Certificate I / II 0.001 0.598 0.599
25–29 years Male New South Wales Certificate not further defined 0.022 0.599 0.621
25–29 years Male New South Wales No non-school qualification 0.282 0.621 0.903
25–29 years Male New South Wales Level not determined 0.097 0.903 1.000
Table 3
National estimate of ID by severity, or by familial cause
Age group Number of people with ID recruited to date Number of moderate to severe ID in Australia (low estimate) Number of moderate to severe ID in Australia (high estimate) Number of mild ID in Australia (low estimate Number of mild ID in Australia (high estimate) Number of familial ID in Australia (low estimate) Number of familial ID in Australia (high estimate) Number of moderate to severe ID with familial cause (low estimate) Number of moderate to severe ID with familial cause (high estimate) Number of mild ID with familial cause (low estimate) Number of mild ID with familial cause (high estimate)
0–4 7 1,700 2,500 14,100 15,000 1,700 3,800 200 600 1,500 3,300
5–19 92 23,500 35,200 199,700 211,400 23,500 54,000 2,300 8,100 21,100 45,900
20–29 30 8,800 13,200 74,800 79,200 8,800 20,200 900 3,000 7,900 17,200
30–39 15 5,300 8,000 45,200 47,800 5,300 12,200 500 1,800 4,800 10,400
40–49 17 5,100 7,700 43,700 46,300 5,100 11,800 500 1,800 4,600 10,100
50–59 1 5,300 8,000 45,200 47,900 5,100 12,800 500 1,800 4,500 11,000
60–69 1 5,000 7,500 42,500 44,900 4,700 12,100 500 1,700 4,200 10,300

Data and code availability

The data underlying the model are confidential. However the authors are happy to discuss the methods used in model development.

The code is not available due to the confidential nature of the data underlying the study. However the authors are happy to discuss the approach taken to model development.

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