The Economic Impact of Childhood Disability in Ireland

+ Department of Economics MPhil/PhD Application Form Please enter your full correspondence details here: Applicant (Student) Details Title (Mr, Miss, Mrs) Forename Surname Telephone No. Fax No. Email Address Postal Address Applicant(s) (College Staff) Please enter full correspondence details for primary NUIG supervisor(s) who will act as supervisor(s) for the project: Details College Primary Supervisor College Supervisor 2 Title Dr. Forename John Surname Cullinan Telephone No. 091 493996 Fax No. Email Address john.cullinan@nuigalway.ie Department/School Economics Postal Address School of Business & Economics, NUI Galway 1

Co-Applicants (Institution/Research Centre) Please enter full correspondence details for Institution Co-supervisors(s) who will act as co-supervisor(s) for the project:* Details Institution Supervisor 1 Institution Supervisor 2 Institution Supervisor 3 Title Forename Surname Telephone No. Fax No. Email Address Department/School Centre Postal Address Project Title Essays on the Economics of Childhood Disability Where applicable some institutions such as Teagasc are involved in co-supervision Research Centre Location for Project: Start Date:1 st September 2011 Finish Date:31 st August 2015 Is the project externally funded: No Yes No If yes please name the sponsor: Breakdown of Funding Year 1 Year 2 Year 3 Year 4 Fellowship Stipend*(Hardiman Research Scholarship) 16,000 16,000 16,000 16,000 Other Project funds Total 16,000 16,000 16,000 16,000 2

1. PROJECT ABSTRACT (300 words max.) The international literature on the economic cost of childhood disability provides strong evidence that households with a child who has a disability are faced with significant additional financial costs which leave them exposed to poverty and debt. Indeed, it is generally considered important from a public policy perspective to measure the extent of this economic burden at a household level, when considering the effectiveness of policies which seek to address various dimensions associated with childhood disability. However, no research to date has explored the economic impact of childhood disability in Ireland. Within this context, therefore, this research will seek to provide evidence on the economic costs (both direct and indirect) of childhood disability, in terms of the additional disability-related expenditures incurred, and its consequences for household labour force participation, earnings and income, clustering of child and adult disability, and overall welfare implications. To do so, the research will employ detailed primary and secondary quantitative data analysis. For example, a questionnaire-based survey of 300 households will be conducted to measure the direct and indirect costs associated with caring for a child with a disability. The secondary data analysis will consist of using micro-econometric modelling techniques and the standard of living modelling framework to analyse datasets such as the Growing Up in Ireland National Longitudinal Survey and the EU Survey of Income and Living Conditions (SILC) for Ireland. The analysis will investigate whether households with a child who has a disability experience a significant welfare loss and whether the additional financial costs incurred in caring for a child with a disability leaves these households exposed to increased deprivation, debt and poverty. Addressing the extra economic costs of childhood disability seems a logical step towards alleviating this deprivation, and the policy implications of the findings will be carefully considered. 2. PROJECT DESCRIPTION 2.1 Title: Essays on the Economics of Childhood Disability 2.2 Objectives: (100 words max.) The aim of this research is to provide evidence on the economic costs (both direct and indirect) of childhood disability, in terms of the additional disability-related expenditures incurred, and its consequences for household labour force participation, earnings and income, clustering of child and adult disability, and 3

overall welfare implications. By addressing the information gap that exists in relation to the economic impact of childhood disability in Ireland, as well as improving on existing methodologies, the research aims to make a significant contribution to both the national and international literatures. From a policy perspective, the findings will be important when considering the effectiveness of current policies which seek to address various dimensions associated with childhood disability. For example, addressing the economic costs of childhood disability seems a logical step towards alleviating the poverty and deprivation typically experienced by households with children with a disability. 2.3 Justification (e.g. economic, gaps in existing knowledge, expected benefits) (400 words max.) It is widely acknowledged that children experiencing an ongoing medical condition or disability present with irreducible needs that must be met in order that they reach their full potential. For instance, Blackburn et al. (2010) emphasize the need to ensure that provisions are made for appropriate and timely services, noting the pivotal influence of early intervention in determining health outcomes and increasing social participation. However, less recognition is given to the level of burden experienced by families caring for a child with a disability. These families experience a great deal of stress and often a sense of loss with their personal circumstances, but they are also faced with significant additional financial costs which leave them exposed to debt and poverty. The ISPCC (2005:19) highlight the fact that disability directly affects over twenty-six thousand young people in Ireland. However, a Report of the National Reference Group on Multidisciplinary Disability Services for Children aged 5-18 (2009) specifically states that a comprehensive information system is needed to ascertain the prevalence of childhood disabilities in Ireland and plan services. Previous studies regarding the socioeconomic implications of disability in Ireland (Cullinan et al. 2010, Gannon and Nolan 2010) have focused on the working age population by addressing issues such as poverty, living standards, employment and earnings. However, to date, no research has explored the economic impact of childhood disabilities in an Irish context. The ISPCC (2005:18) make reference to the fact that the financial impact of having a child with a disability affects the family s financial stability and their functioning, along with placing complex demands upon family systems. However, there is no available research that has estimated the extent of these demands in terms of informing and shaping public policy. International studies have shown that households with disabled children were four times more likely to be living in poverty (Copps and Heady, 2007:32). Blackburn et al. (2010:9) refer to Bradshaws (2008) paper by stating it has been estimated that in the UK, families need incomes that are 10%-18% higher than similar families with non-disabled children to have the same living standard. Furthermore, Meyers et al. (1998:109) note that when poverty and disabilities intersect, the public and private costs associated with children s care 4

have important policy implications. The international literature also notes the issue of reverse causality with regard to poverty and childhood disability (Blackburn, 2010, Petrenchik, 2008). However, no study has considered these issues within an Irish context and this thesis aims to fill this significant gap in the literature with a view to also informing public policy in relation to childhood disability. 2.4 Methodology and other details: (Please ensure that sufficient details are provided to enable the reviewers to establish: hypotheses, the relevant/appropriateness of methodologies being proposed.) (1,500 words max.) The proposed methodology for this research is to conduct a detailed quantitative analysis of both primary and secondary data. The primary data will be gathered by conducting a questionnaire-based survey in relation to the direct and indirect costs associated with caring for a child with a disability. The nationally representative survey will be distributed through main stream education and special needs schools and will focus on identifying the economic costs experienced by 300 households that have a child with a disability. The secondary analysis will examine a number of existing datasets, including the Growing Up in Ireland National Longitudinal Survey, EU SILC data, the National Disability Survey, the Living in Ireland dataset and the Household Budget Expenditure dataset. The findings from this analysis will be used to write four essays addressing distinctive aspects associated with the economics of childhood disability in Ireland. The research questions that will be addressed in these essays are outlined below. Essay One will present a socioeconomic analysis of childhood disability in Ireland based on the Growing Up in Ireland survey. It will examine the impact of childhood disability on a number of socioeconomic dimensions, including labour force participation, earnings and income, deprivation, social participation, welfare dependency, education, etc. The essay will build on international literature that suggests that the extra caring demands associated with childhood disability has important consequences for a range of socioeconomic outcomes. The estimates will be generated using techniques similar to those used by Gannon and Nolan (2004) in their paper on Disability and Labour Force Participation in Ireland. In particular, logit regression models will be used to isolate the impact of childhood disability on the various socioeconomic variables considered. These models will be used to create a profile of the socioeconomic outcomes associated with childhood disability and will be compared to the findings obtained by Gannon and Nolan (2010) who investigated the socioeconomic implications of adult disability in Ireland. The purpose of Essay Two is to identify and measure the extra costs incurred due to childhood disability at a household level in Ireland. These estimates will be based on the findings from the proposed survey which will measure both the direct and indirect costs associated with caring for a child with a disability. The survey will target households that have a child with a disability, whilst also capturing variations in the extent to 5

which the child is hampered daily by their disability. The rationale for obtaining and analysing these estimates is to make a clear distinction between the extra costs of disability experienced at a household level and the provision of childhood disability services. This distinction is necessary to ensure that public policy interventions are informed about the extent of economic burden experienced at a household level. In terms of direct costs, Petrenchik s (2008:9) study in Ontario, Canada states that the cost of raising a child with a disability can be up to 3 times that of raising a typically developing child (Council for Disabled Children, 2007). Additional financial burdens include the costs of special diets and clothing, child care, medications, supplies, and equipment, and home adaptations. The consequences of these direct costs often result in a welfare loss and unmet needs for these families, particularly for a child with a severe disability. For instance, Petrenchik (2008:9) refers to the fact that families of children with severe and very severe disabilities report the greatest unmet needs in this area. Seventy percent of these families cite costs as a barrier to receiving needed help, and 42% cite a lack of available services and programs (Fawcett, Ciceri, Tsoukalas, & Gibson- Kierstead, 2004; Statistics Canada, 2003). Within this context, this essay will also draw from the budget standards approach used in Dobson and Middleton s (1998) survey in the UK which established the minimum essential costs of caring for a child with a severe disability. The author s noted that the central difficulty for parents of severely disabled children is that these minimum essential budgets represent what parents consider to be necessary and not what their children actually receive. Most parents cannot meet the levels of spending implied and for many the gap between the budgets and their weekly income is insurmountable. Thus, the survey will distinguish between the child s actual needs (budget standards approach) and what households can actually afford to spend on these needs (subjective approach). Tibble (2005:9) notes the advantage of using a subjective approach in that respondents are asked to estimate what their additional expenditure is or would be (if they were to meet their needs to an extent) and on what items. In this context, these estimates are not confined to income constraints reflecting expenditure needs. Similarly, this method captures unexpected expenditures which may not be reflected by implementing an expenditure diary approach over a limited time span. Essay Three will examine the extent of clustering in child and adult disabilities in Ireland. Tis is motivated by a finding in Roddy (2011) who analysed data from the Growing Up in Ireland Survey that nearly 24% of main carers with a child who has a disability experience a disability themselves. This rate is reduced to 11.9% for main carers who do not have a child with a disability. Blackburn et al. s (2010) study in the UK highlights the existence of clustering in child and adult disabilities. Whilst, it is acknowledged that this may be influenced by hereditary conditions, it is important to investigate the impact of caring for a child with a disability on the carer s health status. Furthermore, this should be done within the context of investigating the onset of the main carers health difficulties to see whether it preceded or followed the onset of the child s 6

disability. To this end this essay will address the extent to which the economic circumstances and disabilitystatus of the household impacts upon parenting behaviour. Given the fact that income supports strengthen choice, this essay will look at the implications of insufficient income affecting the carer s and child s mental health. Copps and Heady (2007) highlight the stressful circumstances of caring for a child with a disability. However, the argument for increasing respite care must be strengthened from an economic perspective. The fact remains that unless appropriate supports and interventions are provided, the main carers health status will worsen, which may result in the child being placed in full-time institutional care, thus placing an even greater cost upon society. Essay Four will seek to estimate the welfare implications of childhood disability in Ireland. The central focus of the research is to inform public policy about the extent to which households experience a reduction in their standard of living as a result of the economic costs associated with having a child with a disability. Within this context, the modelling framework that will be used is based on the standard of living approach employed by Cullinan et al. (2011) in their paper on The welfare implications of disability for older people in Ireland. One advantage of this approach is that it lends itself to testing whether households that contain an individual with a disability have greater needs than non-disabled households. Thus, from a policy perspective, this approach can investigate whether additional financial supports are necessary to avoid poverty, whilst enabling these households to reach the same level of well-being as non-disabled households. Furthermore, analysis will be conducted on the National Disability Survey s private household child questionnaire in relation to the correlation between household income and unmet needs in terms of not having access to necessary supports and services. Central to this research is the need to address the issue of reverse causality in relation to poverty and childhood disability. Within this context, panel data from the Living in Ireland survey will be used to examine variations across time with regard to the onset of disability and transitions in disability status based on household income. The methodological approach outlined in the four research questions is underpinned by a positivist approach. Thus, by acquiring the relevant data it aims to provide evidence-based findings to inform and shape public policy. Furthermore, the study aims to collaborate with a number of leading organisations such as the National Disability Authority, The ESRI, The Carers Association, The Children s Medical and Research Foundation, The Children s Research Centre, Trinity, The Child and Family Research Centre, NUIG, The Centre for Disability Law and Policy NUIG, the ISPCC and Barnardos. 7

References Blackburn, C., Spencer, N. & Read, J. (2010) Prevalence of childhood disability and the characteristics and circumstances of disabled children in the UK: secondary analysis of the Family Resources Survey, BMC Pediatrics 10(21) pp1-12 BioMed Central [Online]. Available at http://wrap.warwick.ac.uk/3202/ (Accessed: 25 th May 2011) Copps, J. and Heady, L. (2007) What price an ordinary life? The financial costs and benefits of supporting disabled children and their families New Philanthropy Capital [Online]. Available at http://www.philanthropycapital.org/download/default.aspx?id=392 (Accessed 17 th July 2011) Cullinan, J., Gannon, B., Lyons, S. (2010). Estimating the Economic Cost of Living for People with Disabilities, Health Economics, epub ahead of print, DOI:10.1002/hec.1619 Dobson, B. & Middleton, S. (1998) Paying to Care findings The cost of childhood disability, Joseph Rowntree Foundation. Available at http://www.jrf.org.uk/sites/files/jrf/scr748.pdf (Accessed 1st June 2011) Gannon, B. & Nolan, B. (2010) Disability and Social Inclusion in Ireland. Available at: http://www.nda.ie/cntmgmtnew.nsf/0/d7a08e2e2a388b85802570660054ec15?opendocument (Accessed on the 30 th May, 2011) Gannon, B. And Nolan, B. (2006). The impact of disability transitions on social inclusion. ScienceDirect [Online]. Available at: http://www.sciencedirect.com/science/article/pii/s0277953606006034 (Accessed: 14th August, 2011) Heywood, J. (2010) Childhood disability: ordinary lives for extraordinary familes, Community Practioner [Online]. Available at http://www.faqs.org/periodicals/201004/2007798471.html (Accessed 12th July, 2011) Ireland s New Children s Hospital (2011) Cost Schedule and Funding, [Online]. Available at http://www.newchildrenshospital.ie/index.cfm/page/cost_schedule (Accessed 7th October, 2011) Irish Society for the Prevention of Cruelty to Children, (2005) An exploratory study of the impact of childhood disability on individual family members, relationships, family life and dynamics. ISPCC [Online]. Available at www.ispcc.ie/.../an_exploratory_study_of_the_impact_of_childhood_di.aspx (Accessed 26 th May 2011) Jacobs, P. and Mc Dermott, S. (1989), Family Caregiver Costs of Chronically ill and Handicapped Children: Method and Literature Review. NCBI [Online]. Available at http://www.ncbi.nlm.nih.gov/pmc/articles/pmc1580019/pdf/pubhealthrep00204-0056.pdf (Accessed 8 th August 2011) Meyers, M., Lukemeyer, A. & Smeeding, T. (1998) The Cost of Caring: Childhood Disability and Poor Families, CHICAGO JOURNALS, 72 (2), pp.209-233 JSTOR [Online]. Available at: http://www.jstor.org/stable/30012941 (Accessed: 30 th May, 2011) 8

Swords, L., Greene, S., Boyd, E.and Kerins, L. (2011) All You Need Is Measuring Children s Perceptions and Experiences of Deprivation Children s Research Centre, Trinity College Dublin. [Online]. Available at: http://www.barnardos.ie/assets/files/advocacy/2011-09-all-you-need-is.pdf (Accessed 12 th September 2011) Tibble, M. (2005) Review of existing research on the extra costs of disability. Department for Work and Pensions Working Paper No. 21 [Online]. Available at http://research.dwp.gov.uk/asd/asd5/wp21.pdf (Accessed 7 th October, 2011) 2.5 Workplan and Timescale: (The objective here is to clearly demonstrate that thought has been given the major components of the workplan rather than being overly prescriptive). Task Title Timescale Any other relevant information Number Text (500 characters) Number of Months Text (750 characters) 1 Literature review 12 months 2 Identify relevant datasets and their limitations in relation to analysing childhood disability 3 months 3 Advanced research proposal 6 months 4 Design survey 6 months 5 Conduct pilot survey and analyse survey 9 months 6 Write essay 1 6 months 7 Write essay 2 6 months 8 Write essay 3 6 months 9 Write essay 4 6 months 2.6 Expected outcomes: (e.g. deliverables) (400 words max.) This research aims to contribute to the Irish and international literature by targeting publications in various journals including the Economic and Social Review, the Journal of Disability and Society, Health Economics, and the Journal of European Social Policy. The final outcome will be a PhD thesis awarded by the National University of Ireland, Galway. 9

3.1 AFFIRMATION Signature of applicant (student): (Attach list of any relevant publications or reports if applicable for the applicant) 3.2 AFFIRMATION Signature of primary NUIG supervisor (supervisor): Date: (Attach list of 5 most recent peer-reviewed scientific publications for main college applicant) Signature of Institution Co-supervisor: (Attach list of 5 most recent peer-reviewed scientific publications for Institution Co-supervisor) 10