Societal cost of childhood intellectual disability in Australia

Abstract

Background There is limited research quantifying the direct and indirect economic costs associated with intellectual disability (ID) in Australia. Costs incurred by families, governments and broader society include time spent providing care, absenteeism and increased healthcare utilisation. The purpose of this research is to quantify the costs associated with ID in childhood using a range of methods to collect cost data. Methods Costs included healthcare service utilisation, pharmaceutical use, caregiver productivity losses and time spent providing care because of the child's disability. The sample comprised caregivers with a child with ID aged between 2 and 10 years old recruited in Australia. Healthcare service utilisation and pharmaceutical use were obtained from routinely collected administrative claims data. Healthcare utilisation not captured in the routinely collected administrative data and absenteeism data were obtained from a retrospective recall‐based questionnaire. Time spent providing care because of the child's disability was obtained using a time‐use diary. Results The total cost of ID in Australia was estimated to be AUD 72 027 per year per child, and the total cost of ID in childhood was estimated to be AUD 12.5 billion per year. The cost to governments of ID in childhood was estimated to be AUD 6385 per child per year, resulting in a total cost to government of AUD 1.1 billion per year. Conclusions This is the first study to estimate the direct and indirect costs associated with ID in childhood. The results of this research demonstrate the considerable economic impact of ID in childhood on families, governments and broader society in terms of both direct and indirect costs. An understanding of the cost implications of any intervention are critical in assisting policymakers in planning and prioritising of health services.

Estimating the impact of Angelman syndrome on parental productivity in Australia using productivity-adjusted life years

“…Studies estimating the productivity burden of intellectual disability in Australia provide useful context and points of comparison. 37,38 However, these studies each addressed slightly different research questions, and hence their results are not directly comparable to those described in the present study. Arora et al (2020) sought to quantify the costs associated with intellectual disability in childhood in Australia, including costs associated with healthcare, informal care and productivity losses.…”

“…37 In doing so, Arora et al (2020) estimated that the total cost of intellectual disability in Australia was AUD$72,027 per child and $12.5 billion per year, including $142.4 and $239.3 per month due to paid and unpaid absences from work, respectively. 37 Arora et al (2020) also found that only 47% of parents reported being employed, but this burden was not included in the productivity losses estimated. 37 Similarly, Doran et al (2012) estimated the cost of intellectual disability in Australia, arriving at a value of AUD$14.7 billion per year, with the opportunity cost of lost time accounting for 85% of this cost.…”

“…37 Arora et al (2020) also found that only 47% of parents reported being employed, but this burden was not included in the productivity losses estimated. 37 Similarly, Doran et al (2012) estimated the cost of intellectual disability in Australia, arriving at a value of AUD$14.7 billion per year, with the opportunity cost of lost time accounting for 85% of this cost. 38 Doran et al (2012) also found that over 70% of parents sacrifice work opportunities to accommodate their caregiving responsibilities.…”

“…Previous studies have found that parents of AS children have had to change careers in order to accommodate their caregiving responsibilities, while others reported that their progression in their chosen career track was stunted. 31,37 Furthermore, limitations in the granularity of data available to support the estimation of the parental productivity index meant that the parental productivity impact associated with the ‘lengthy diagnostic odyssey’ commonly experienced by the families of persons with AS was not to be estimated. 1 However, it is anticipated that diagnostic approaches which support reducing the time to an AS diagnosis could have a flow-on benefit of reducing a component of the parental stress associated with having a child with AS.…”

Do Costs in the Education Sector Matter? A Systematic Literature Review of the Economic Impact of Psychosocial Problems on the Education Sector

“…In one study, cost selection was based on data included in administrative records [ 51 ]. In addition, the authors of five studies justified their selection of cost categories as including all potentially relevant costs based on the definition of a societal perspective [ 30 , 33 , 38 , 47 , 71 ] and education costs in particular as “typical components of direct nonmedical costs” [ 43 ], “important cost for many children with autism” [ 47 ], and “important resource units” [ 72 ]. The majority of the studies (70%) did not report any specific methods used for identifying the education cost items.…”