Trends in disability prevalence among young people: Insights from the Growing Up in Ireland study

Smyth, Emer; Russell, Helen Research Report Trends in disability prevalence among young people: Insights from the Growing Up in Ireland study Research Series, No. 192 Provided in Cooperation with: The Economic and Social Research Institute (ESRI), Dublin Suggested Citation: Smyth, Emer; Russell, Helen (2024) : Trends in disability prevalence among young people: Insights from the Growing Up in Ireland study, Research Series, No. 192, The Economic and Social Research Institute (ESRI), Dublin, https://doi.org/10.26504/rs192 This Version is available at: https://hdl.handle.net/10419/306705 Standard-Nutzungsbedingungen: Die Dokumente auf EconStor dürfen zu eigenen wissenschaftlichen Zwecken und zum Privatgebrauch gespeichert und kopiert werden. Sie dürfen die Dokumente nicht für öffentliche oder kommerzielle Zwecke vervielfältigen, öffentlich ausstellen, öffentlich zugänglich machen, vertreiben oder anderweitig nutzen. Sofern die Verfasser die Dokumente unter Open-Content-Lizenzen (insbesondere CC-Lizenzen) zur Verfügung gestellt haben sollten, gelten abweichend von diesen Nutzungsbedingungen die in der dort genannten Lizenz gewährten Nutzungsrechte. Terms of use: Documents in EconStor may be saved and copied for your personal and scholarly purposes. You are not to copy documents for public or commercial purposes, to exhibit the documents publicly, to make them publicly available on the internet, or to distribute or otherwise use the documents in public. If the documents have been made available under an Open Content Licence (especially Creative Commons Licences), you may exercise further usage rights as specified in the indicated licence. https://creativecommons.org/licenses/by/4.0/ TRENDS IN DISABILITY PREVALENCE AMONG YOUNG PEOPLE: INSIGHTS FROM THE GROWING UP IN IRELAND STUDY EMER SMYTH AND HELEN RUSSELL RESEARCH SERIES NUMBER 192 OCTOBER 2024 E V I D E N C E F O R P O L I C Y TRENDS IN DISABILITY PREVALENCE AMONG YOUNG PEOPLE: INSIGHTS FROM THE GROWING UP IN IRELAND STUDY Emer Smyth Helen Russell October 2024 RESEARCH SERIES NUMBER 192 Available to download from www.esri.ie © The Economic and Social Research Institute Whitaker Square, Sir John Rogerson’s Quay, Dublin 2 https://doi.org/10.26504/rs192 This Open Access work is licensed under a Creative Commons Attribution 4.0 International License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution and reproduction in any medium, provided the original work is properly credited. ABOUT THE ESRI The Economic and Social Research Institute (ESRI) advances evidence-based policymaking that supports economic sustainability and social progress in Ireland. ESRI researchers apply the highest standards of academic excellence to challenges facing policymakers, focusing on ten areas of critical importance to 21st century Ireland. The Institute was founded in 1960 by a group of senior civil servants led by Dr T.K. Whitaker, who identified the need for independent and in-depth research analysis. Since then, the Institute has remained committed to independent research and its work is free of any expressed ideology or political position. The Institute publishes all research reaching the appropriate academic standard, irrespective of its findings or who funds the research. The ESRI is a company limited by guarantee, answerable to its members and governed by a Council, comprising up to 14 representatives drawn from a crosssection of ESRI members from academia, civil services, state agencies, businesses and civil society. Funding for the ESRI comes from research programmes supported by government departments and agencies, public bodies, competitive research programmes, membership fees and an annual grant-in-aid from the Department of Public Expenditure NDP Delivery and Reform. Further information is available at www.esri.ie. THE AUTHORS Emer Smyth and Helen Russell are Research Professors at the Economic and Social Research Institute (ESRI) and hold adjunct professor positions at Trinity College Dublin (TCD). ACKNOWLEDGEMENTS This publication was funded by the Department of Children, Equality, Disability, Integration and Youth (DCEDIY) through a joint Research Partnership with the ESRI. The views, opinions, findings, conclusions and/or recommendations expressed here are strictly those of the authors. They do not necessarily reflect the views of the DCEDIY, which takes no responsibility for any errors or omissions in, or for the accuracy of, the information contained in this publication. It is presented to inform and stimulate wider debate among the policy community and among academics and practitioners in the field. We are grateful to Gráinne Collins, Ciara Pidgeon, Tony Fahey, Aisling Murray and Eithne Fitzgerald for their advice and support for the project. Useful comments were provided by the external reviewer, two ESRI reviewers and the editor, Anne Nolan. As always, we are grateful to the Growing Up in Ireland (GUI) Study Team and the families involved in GUI for making this research possible. GUI is the national longitudinal study of children, funded by Government. The project is managed and delivered through a collaboration between the DCEDIY and the Central Statistics Office (CSO). Results in this report are based on analyses of strictly controlled Research Microdata Files provided by the Central Statistics Office (CSO) and of Anonymised Microdata Files provided by the Irish Social Science Data Archive (ISSDA). The CSO does not take any responsibility for the views expressed or the outputs generated from this research. This report has been accepted for publication by the Institute, which does not itself take institutional policy positions. All ESRI Research Series reports are peer reviewed prior to publication. The author(s) are solely responsible for the content and the views expressed. Table of contents | i TABLE OF CONTENTS ABBREVIATIONS ...................................................................................................................................... v EXECUTIVE SUMMARY ........................................................................................................................... vi CHAPTER 1 INTRODUCTION: THE MEASUREMENT OF DISABILITY PREVALENCE ................................... 1 1.1 Background to the study............................................................................................................... 1 1.2 International research on trends in disability prevalence among children and young people ........................................................................................................................................... 1 1.3 Existing measures of disability among children and young people in Ireland ............................. 4 1.4 Disability prevalence using Growing Up in Ireland data ............................................................... 7 1.4.1 Previous research using GUI data ............................................................................................................................................................ 7 1.4.2 New estimates of changes in prevalence over time......................................................................................................... 7 1.5 Conclusions ................................................................................................................................. 15 CHAPTER 2 TRENDS IN THE PROFILE OF YOUNG PEOPLE WITH DISABILITIES ...................................... 17 2.1 Introduction ................................................................................................................................ 17 2.2 Socio-demographic profile ......................................................................................................... 17 2.3 Health and wellbeing by disability status ................................................................................... 22 2.4 Conclusions ................................................................................................................................. 27 CHAPTER 3 OUTCOMES AMONG YOUNG PEOPLE WITH DISABILITIES ................................................. 29 3.1 Introduction ................................................................................................................................ 29 3.2 Relationships with parents ......................................................................................................... 29 3.3 Relationships with peers............................................................................................................. 33 3.4 Involvement in sports ................................................................................................................. 35 3.5 Attitudes to school...................................................................................................................... 36 3.6 Conclusions ................................................................................................................................. 37 CHAPTER 4 CONCLUSIONS AND IMPLICATIONS FOR POLICY ............................................................... 38 4.1 Introduction ................................................................................................................................ 38 4.2 The prevalence of long-lasting conditions and disability ........................................................... 38 4.3 Disability, health and wellbeing .................................................................................................. 39 4.4 Disability and adolescent outcomes ........................................................................................... 39 4.5 Implications for policy ................................................................................................................ 40 REFERENCES .....................................................................................................................................................................................................................................................42 ii | Trends in disability prevalence among young people LIST OF TABLES Table 1.1 Measures of long-lasting conditions, disability and special educational needs over waves and cohorts ..................................................................................................... 8 Table 1.2 Measures of types of conditions over waves and cohorts ............................................... 10 Table 2.1 Multinomial logit model of factors associated with disability status (relative risk ratios) (Base category: no long-lasting condition or disability) ................................. 19 Table 3.1 Regression models of parent–child relationships at age 13 and changes over time .................................................................................................................................. 30 Table 3.2 Ordered logit model of number of close friends at age 13 and changes over time (Odds ratios) ............................................................................................................. 33 Table 3.3 OLS regression model of peer problems (SDQ subscale) at age 13 and changes over time .......................................................................................................................... 34 Table 3.4 Logistic regression model of daily involvement in organised sports and changes over time (Odds ratios) ...................................................................................... 35 Table 3.5 Ordinal logit model of negative attitudes to school at age 13 and changes over time (Base group: like school very much) (Odds ratios)................................................... 36 LIST OF FIGURES Figure 1.1 Types of conditions or difficulties as a percentage of 13-year-olds with a disability, Census 2022 ....................................................................................................... 4 Figure 1.2 Proportion of those with selected conditions among those with a disability by age, Census 2022 ................................................................................................................ 5 Figure 1.3 Census estimates of percentage of 9and 13-year-olds with a disability, 2011– 2022 .................................................................................................................................... 6 Figure 1.4 Prevalence of long-lasting conditions at 9 and 13 years of age, distinguishing between those who are and are not hampered by that condition, as reported by mothers ....................................................................................................................... 11 Figure 1.5 Prevalence of special educational needs at 9 years of age, as reported by teachers ............................................................................................................................ 12 Figure 1.6 Proportion of 13-year-olds with a long-lasting condition that have been diagnosed with one or more conditions by cohort .......................................................... 13 Figure 1.7 Types of long-lasting condition (largest groups) as percentage of total population (with and without a long-lasting condition) .................................................. 13 Figure 1.8 Type of condition or difficulty as a proportion of those in the non-hampered long-lasting condition and disability groups, 13-year-olds of Cohort ’08 ........................ 14 Figure 1.9 Prevalence of emotional and behaviour difficulties in the school, as reported by school principals .......................................................................................................... 15 Figure 2.1 Disability status at age 13 by gender and cohort ............................................................. 17 Lists of tables and figures | iii Figure 2.2 Predicted percentage with a disability by gender and cohort ......................................... 20 Figure 2.3 Predicted percentage with a disability by parental education and cohort ...................... 20 Figure 2.4 Predicted percentage with a disability by social class and cohort ................................... 21 Figure 2.5 Type of condition among those with a disability (that is, hampered by that condition) by gender, Cohort ’08 ..................................................................................... 22 Figure 2.6 Percentage having at least some health problems by disability status and cohort at age 13 ............................................................................................................... 23 Figure 2.7 Mean depression score (CES-D) by gender, disability status and cohort......................... 24 Figure 2.8 Mean level of socio-emotional difficulties (SDQ subscales) by disability status and cohort: boys ............................................................................................................... 24 Figure 2.9 Mean level of socio-emotional difficulties (SDQ subscales) by disability status and cohort: girls ................................................................................................................ 25 Figure 2.10 Mean level of socio-emotional difficulties (SDQ total difficulties) by disability status and cohort: boys .................................................................................................... 26 Figure 2.11 Mean level of socio-emotional difficulties (SDQ total difficulties) by disability status and cohort: girls ..................................................................................................... 26 Figure 2.12 Percentage with a ‘problematic’ or ‘borderline’ SDQ score (14 or more) by gender, disability status and cohort ................................................................................. 27 Figure 3.1 Predicted mother–child conflict by disability status across cohorts ................................ 31 Figure 3.2 Predicted father–child conflict by disability status across cohorts .................................. 31 Figure 3.3 Predicted percentage of young people who get on very well with their mother by disability status across cohorts .................................................................................... 32 Figure 3.4 Predicted maternal responsiveness by disability status across cohorts .......................... 32 Figure 3.5 Predicted percentage of young people with four/five or six or more close friends by disability status across cohorts........................................................................ 34 Figure 3.6 Predicted SDQ peer problems by disability status across cohorts ................................... 35 Figure 3.7 Predicted percentage of young people involved in organised sports at least weekly by disability status across cohorts ....................................................................... 36 Figure 3.8 Predicted percentage of young people who like school very much by disability status across cohorts ........................................................................................................ 37 iv | Abbreviations ABBREVIATIONS ADHD Attention deficit hyperactivity disorder AME Average marginal effect ASD Autism spectrum disorder CES-D Center for Epidemiological Studies-Depression DCEDIY Department of Children, Equality, Disability, Integration and Youth ESPSEN Education for Persons with Special Educational Needs Act GUI Growing Up in Ireland study HRB Health Research Board ICD International Classification of Diseases LLC Long-lasting illness, condition or disability NCSE National Council for Special Education NIDD National Intellectual Disability Database OLS Ordinary least square (regression model) PISA Programme for International Student Assessment SDQ Strengths and Difficulties Questionnaire SEN Special educational needs 4 | Trends in disability prevalence among young people 1.3 EXISTING MEASURES OF DISABILITY AMONG CHILDREN AND YOUNG PEOPLE IN IRELAND In Census 2022, the identification of disability is based on two questions: whether the person experiences a long-lasting condition or difficulty; and whether, as a consequence of this condition, they have difficulty with day-to-day or work tasks. Those who reported any difficulties in either question were counted as having a disability. Census 2022 figures indicate that 12 per cent of 9-year-olds and 14 per cent of 13-year-olds were reported to have a disability. At both ages, rates were higher for males than for females, though the gender gap was somewhat narrower at 13 than at 9 (15.8 vs. 12.5 per cent at 13; 14.7 vs. 9.5 per cent at 9). Figure 1.1 shows the types of conditions or difficulties as a percentage of 13-year-olds with a disability. The main difficulties relate to learning or psychological difficulties, with over half reported to have difficulties in learning, remembering or concentrating. One-quarter are reported to have a vision impairment, though this group is indicated as being affected to some extent rather than to a great extent, presumably including conditions that can be corrected. FIGURE 1.1 TYPES OF CONDITIONS OR DIFFICULTIES AS A PERCENTAGE OF 13-YEAROLDS WITH A DISABILITY, CENSUS 2022 Source: Census 2022. Note: Totals add to more than 100 per cent because multiple difficulties can be indicated. However, the Census data provide interesting insights into the prevalence of certain conditions by age group. Physical difficulties are more common among older age groups (not shown here). Among children and young people with a disability, the majority have difficulties in learning, remembering or concentrating, or psychological, emotional or mental health difficulties (Figure 1.2). Difficulties in learning, remembering or concentrating make up a large proportion of those aged 5 to 14 years (as a proportion of those with a disability and also in terms of absolute numbers, not shown here). Emotional or mental health difficulties account for a 2.5 11.9 19.1 24.8 26.5 26.9 52.7 010 20 30 40 50 60 Deafness/hearing impairment Physical activities (walking, climbing etc.) Pain/breathing/other Blindness/vision impairment Psychological/ emotional/ mental health Intellectual disability Learning/ remembering/ concentrating % Introduction | 5 greater proportion of conditions among those aged 15 to 19 years, with a further increase into the twenties. These figures cannot indicate whether the patterns relate to greater identification of conditions among young people or increased levels of need among these age groups. FIGURE 1.2 PROPORTION OF THOSE WITH SELECTED CONDITIONS AMONG THOSE WITH A DISABILITY BY AGE, CENSUS 2022 Source: Census 2022. The Census statistical releases caution against looking at trends over time, because of changes in the question format. Nonetheless, the figures do point to an increasing prevalence of disability over time among 9and 13-year-olds (Figure 1.3). 2 Furthermore, there is evidence at all three time-points of increasing identification or emergence of need between 9 and 13 years of age. 2 This appears to be a longer-term trend, with disability prevalence increasing from 4.2 to 6.1 per cent among 5to 9-year-olds and 5.8 to 7.7 per cent among 10to 14-year-olds between 2006 and 2011. 0 10 20 30 40 50 60 Intellectual disability Learning/remembering/concentrating Psychological/emotional % 0-4 5-9 10-14 15-19 20-24 25-29 6 | Trends in disability prevalence among young people FIGURE 1.3 CENSUS ESTIMATES OF PERCENTAGE OF 9AND 13-YEAR-OLDS WITH A DISABILITY, 2011–2022 Source: Census 2011, 2016 and 2022. Available administrative data in Ireland generally focus on those in receipt of services, rather than the broader group with long-lasting conditions. Under the 2005 Disability Act, an assessment of need identifies a child’s health needs and the services required to meet those needs. The proportion of those who were assessed under this statutory assessment of need process as having an autism diagnosis increased from 29 per cent of those with an identifiable condition in 2015 to 54 per cent in 2022.3 Similarly, autism prevalence among school-leaver applicants for disability day services increased from 35 per cent in 2019 to 52 per cent in 2023. Between 2014 and 2021, the number of students attending special classes at primary level increased by 129 per cent (to 8,740) and by 205 per cent (to 3,178) at second level (Department of Education, 2023; NCSE, 2024). National Council for Special Education (NCSE) figures indicate that the most common designation for special classes is for ASD or ASD early intervention. Health Research Board (HRB) data for people engaging with disability services (registered on the National Ability Supports System) included 45,068 children and young people in 2022 (3.5 per cent of all those aged under 18).4 Of these, 39 per cent had autism as a primary disability, 24 per cent had an intellectual disability and 6 per cent had a physical disability. McConkey et al. (2019) highlighted the challenges in identifying the prevalence of intellectual disability and pointed to much higher numbers identified by the Census than by administrative data (the National Intellectual Disability Database, NIDD). In 2011, the Census identified 1.8 times more children than were registered on the 3We are very grateful to Eithne Fitzgerald, DCEDIY, for access to these and other figures quoted in this section. 4See https://www.hrb.ie/data-collections-evidence/disability-service-use-and-need/latest-data/. 7.3 7.6 12.2 7.9 8.4 14.2 0 4 8 12 16 2011 2016 2022 % 9 years 13 years Introduction | 7 NIDD, and 2.35 times more in 2016. This reflects the fact that not all children with an intellectual disability require specialist services. 1.4 DISABILITY PREVALENCE USING GROWING UP IN IRELAND DATA 1.4.1 Previous research using GUI data To date, two studies have used GUI data to derive estimates of the proportion of children with disabilities or additional needs. Both studies indicated estimates higher than those given by the Census. Banks and McCoy (2011) used GUI data to estimate the number of children with a SEN, reflecting the broad definition of SEN used by the Education for Persons with Special Educational Needs (ESPSEN) Act 2004. Based on 9-year-olds from GUI Cohort ’98, this definition included: those identified as having physical, speech, learning and emotional/behavioural disabilities by their teacher; those identified by their mother as having a learning difficulty or communication or coordination disorder, speech difficulties or a physical or mental health problem, illness or disability that hampered their daily activities; and those rated as having high levels of socio-emotional difficulties (being in the top ten per cent on the SDQ total difficulties scale), as reported by teachers. The study pointed to an overall prevalence of 25 per cent, with higher SEN levels among boys than girls. 5 Whelan et al. (2021) used GUI Cohort ’08 data on 5-year-olds, basing estimates on teacher reports of limitations affecting the child at school. Their estimate of prevalence was 8.8 per cent compared to 4.5 per cent for the 2016 Census. Including speech difficulty or mild general learning difficulty increased the estimate to 15.5 per cent. In particular, the GUI estimates for intellectual disability, difficulty with learning, remembering or concentrating and psychological/emotional conditions were higher than estimates based on Census data. 1.4.2 New estimates of changes in prevalence over time This study uses GUI data from Cohorts ’98 and ’08 to derive estimates of changes in the prevalence of LLCs and disabilities among young people over time. Fieldwork for Cohort ’98 at 13 years of age took place on a face-to-face basis over the period of August 2011 to February 2012, with a response rate of 90 per cent of the valid sample (Thornton et al., 2016). Reflecting continuing public health restrictions at the time (July 2021 to June 2022), fieldwork for Cohort ’08 at 13 years of age was conducted via telephone, with the self-complete element (on sensitive topics like depression) administered via an online platform hosted by the Central Statistics Office (CSO) (Murray et al., 2023). The response rate was 78 per cent of the valid sample (Murray et al., 2023). In both survey waves, attrition was greater among 5 Using a slightly different classification on the same data, Cosgrove et al. (2014) estimated the proportion of 9-year-olds with a SEN to be 28 per cent. 8 | Trends in disability prevalence among young people more socio-economically disadvantaged groups, so weighting is used to make the samples representative of the population as a whole. TABLE 1.1 MEASURES OF LONG-LASTING CONDITIONS, DISABILITY AND SPECIAL EDUCATIONAL NEEDS OVER WAVES AND COHORTS Cohort ’98 Cohort ’08 At age 9: Long-lasting condition Does the study child have any ongoing chronic physical or mental health problem, illness or disability? Does the child have any longstanding illness, condition or disability? By longstanding I mean anything that has troubled him/her over a period of time or that is likely to affect him/her over a period of time? If yes, is the study child hampered in his/her daily activities by this problem, illness or disability? If yes, do any of these illnesses hamper the child in his/her daily activities? At age 13: Long-lasting condition (open) Does the child have any ongoing chronic physical or mental health problem, illness or disability? If yes, whether hampered in their daily activities. Long-lasting condition (list) Does the child have any of the following conditions or disabilities? Does the child have any of the following long-lasting conditions or difficulties? If yes, whether hampered in their daily activities. At age 9 only (teacher report): Special educational needs Do any of the following limit the kind or amount of activity the study child can do at school? Do any of the following limit the kind or amount of activity the study child can do at school? Source: GUI Cohorts ’98 and ’08. Age 9 interviews were carried out in 2007/2008 and 2017/2018 respectively. Age 13 interviews were carried out in 2011/2012 and 2021/2022 respectively. Table 1.1 outlines the measures used in both cohorts for those aged 9 and 13 years of age, while Table 1.2 shows measures of the types of conditions. Two sets of information are used to derive the main measures employed in the remainder of the report. Firstly, at age nine, whether the child or young person has an ongoing or long-standing illness or disability is measured by answers given by primary caregivers (hereafter, termed mothers) to the open question on whether the child has such a condition. At age 13, mothers in Cohort ’98 were asked a similar open question about ongoing conditions, but were also asked whether the child had any of a list of conditions or disabilities. Mothers in Cohort ’08 were only asked whether Introduction | 9 their child had any of the list of conditions, and the list was slightly different from that used for Cohort ’98, reflecting the terminology used in Census 2022. Secondly, mothers were asked about the extent to which their child was hampered in their day-to-day lives by that condition. These measures were used to distinguish between the following groups: 1. ‘Non-hampered LLC’ – those who have a long-lasting condition but are not hampered by it. 2. ‘Disability’ – those who have a long-lasting condition and are hampered by it, at least to some extent. For reasons of comparability, the ‘list’ measure is used for both cohorts to capture having an LLC at age 13. 6 A measure of having a SEN, as reported by the primary teacher, is also included in this chapter for comparative purposes. It is based on the child being limited in their activities at school because of one of a list of conditions. This measure is only available at age 9 as teachers were not surveyed for the 13 year wave. The measure of disability used in this study does not replicate that derived by Banks and McCoy (2011) for two reasons. First, the primary focus of the study is on 13-year-olds and the lack of teacher reports at this wave means we cannot triangulate information from parents and teachers. Second, we are interested in looking at changes over time, so using a relative measure of socio-emotional difficulties (top 10 per cent of SDQ) would constrain such a comparison. 6 As noted above, the disability question (whether the young person is hampered by their condition) at age 13 for Cohort ’98 is filtered through responses to the open question. This makes the disability group a smaller subgroup of those with LLC. 10 | Trends in disability prevalence among young people TABLE 1.2 MEASURES OF TYPES OF CONDITIONS OVER WAVES AND COHORTS Cohort ’98 Cohort ’08 At age 9: Long-lasting condition ICD-10 codes – 14 categories mainly framed as ‘diseases of …’ with one category for ‘mental and behavioural disorders’. Coded into 23 conditions and an ‘other’ category – mixture of ‘a problem with…’ and named conditions. At age 13: Long-lasting condition (open) ICD-10 codes – 14 categories mainly framed as ‘diseases of…’ with one category for ‘mental and behavioural disorders’. Long-lasting condition (list) List of 8 conditions and an ‘other (please specify)’ option. List of eight difficulties and an ‘any other’ category. Adapted version of Census 2022 wording and differs from Cohort ’98. Also asked, what is the nature of this condition or difficulty? ICD-10 codes. At age 9 only (teacher report): Special educational needs Four conditions and other; uses term ‘learning disability’. Seven conditions and other; separates out into specific, general: mild and general: moderate/ severe/ profound; ASD. Challenge across cohorts Small number in many categories (often too small to report); ‘mental/behavioural’ category not well differentiated. Source: GUI Cohorts ’98 and ’08. Note: ICD: International Classification of Diseases. Table 1.2 indicates significant change in the definitions used to measure types of impairments or conditions between cohorts and between survey waves, reflecting changes in awareness and use of terminology over time. The International Classification of Diseases (ICD) classification is used at age 13 in both cohorts but the small number in many categories means that we cannot report several of these groups. Furthermore, the ‘mental/behavioural’ category is not well differentiated. Introduction | 11 FIGURE 1.4 PREVALENCE OF LONG-LASTING CONDITIONS AT 9 AND 13 YEARS OF AGE, DISTINGUISHING BETWEEN THOSE WHO ARE AND ARE NOT HAMPERED BY THAT CONDITION, AS REPORTED BY MOTHERS Source: GUI Cohorts ’98 and ’08 Figure 1.4 shows the prevalence of having an LLC at ages 9 and 13, distinguishing between those who are hampered by that condition (disability) and those who are not (non-hampered LLC). The figures show a very significant increase in reported prevalence of any condition between cohorts (over a decade) – from 11 to 24 per cent at age 9 and from 21 to 36 per cent at age 13. There is also an increase in prevalence as children get older (by 10 percentage points for Cohort ’98 and 11 percentage points for Cohort ’08). This reflects a growing identification of need and/or emerging conditions. It should be noted that the framing of questions makes a difference. At age 13 (in Cohort ’98), 21 per cent of mothers reported that their child has one of a list of conditions, but when asked an open question about long-standing conditions, the reported prevalence is lower, at 11 per cent. There is a marked increase over time in those who have a disability (that is, a condition by which they are hampered): from 4 per cent for Cohort ’98 to 13 per cent for Cohort ’08 at age 9, and from 6 per cent for Cohort ’98 to 23 per cent for Cohort ’08 at age 13. Disability increases markedly with age for Cohort ’08 (from 13 to 23 per cent) but growth between 9 and 13 years is much more modest for Cohort ’98. 6.4 4.4 10.8 15.4 5.8 21.2 11 13.3 24.3 12.9 22.8 35.7 0 5 10 15 20 25 30 35 40 Non-hampered LLC Disability (hampered by LLC) Any LLC Non-hampered LLC Disability (hampered by LLC) Any LLC At 9 At 13 % Cohort '98 Cohort '08 12 | Trends in disability prevalence among young people FIGURE 1.5 PREVALENCE OF SPECIAL EDUCATIONAL NEEDS AT 9 YEARS OF AGE, AS REPORTED BY TEACHERS Source: GUI Cohorts ’98 and ’08. As discussed above, teacher-reported SEN measures are only available at age nine. Prevalence increases from 13 per cent for Cohort ’98 to 17 per cent for Cohort ’08 (Figure 1.5). Increases are evident across all of the categories listed, though are most marked for behavioural difficulties. The results show that the prevalence of disability or SEN depends on the definition used as well as the informant involved: just under half (49 per cent) of those reported to have a disability by their mother are reported to have a SEN by their primary teacher. This likely reflects the interaction between individual need and the environment, in keeping with the social model of disability. In this way, a young person may be hampered in relation to a particular domain, such as school engagement but not in another, for example, peer relationships. 2.1 7.3 1.9 1.6 12.9 4.8 8.8 3.1 2.6 17.2 0 4 8 12 16 20 Behavioural Learning disability Physical Speech/language Total % Cohort '98 Cohort '08 Introduction | 13 FIGURE 1.6 PROPORTION OF 13-YEAR-OLDS WITH A LONG-LASTING CONDITION THAT HAVE BEEN DIAGNOSED WITH ONE OR MORE CONDITIONS BY COHORT Source: GUI Cohorts ’98 and ’08. As well as being asked about the presence of conditions, mothers were asked about whether their child had received a diagnosis for that condition. The proportion of the total cohort who had received at least one diagnosis increased from 16 per cent for Cohort ’98 to 31 per cent for Cohort ’08 (Figure 1.6). Over four-fifths of the non-hampered LLC group had received a diagnosis in both cohorts. In contrast, the proportion of those who had a disability with a diagnosis increased over time, from 63 to 88 per cent. FIGURE 1.7 TYPES OF LONG-LASTING CONDITION (LARGEST GROUPS) AS PERCENTAGE OF TOTAL POPULATION (WITH AND WITHOUT A LONG-LASTING CONDITION) Source: GUI Cohorts ’98 and ’08. Figure 1.7 refers to the two largest groups of LLC. The small sample size here means it is not possible to break this down in detail between those who are hampered by that condition (i.e. those with a disability) and those who are not. The figures show 86 63.2 16.3 83.2 87.7 30.7 0 20 40 60 80 100 Non-hampered LLC Disability Total cohort % Cohort '98 Cohort '08 1.3 3.8 1.4 3.3 4.6 10 17.4 4.8 0 4 8 12 16 20 Behavioural Respiratory Behavioural Respiratory At 9 At 13 % Cohort '98 Cohort '08 20 | Trends in disability prevalence among young people FIGURE 2.2 PREDICTED PERCENTAGE WITH A DISABILITY BY GENDER AND COHORT Source: Derived from models in Table 2.1 with interaction term included. Note: The 95 per cent confidence intervals do not overlap for Cohort ’98 but do for Cohort ’08. There is little systematic variation in disability status by parental education and this relationship does not change over time, with disability prevalence increasing for all education groups (Figure 2.3). Similarly, growth in prevalence was evident across all social class groups (Figure 2.4). While there appeared to be less relative increase among the professional group, the overlapping confidence intervals indicate this difference is not statistically significant. FIGURE 2.3 PREDICTED PERCENTAGE WITH A DISABILITY BY PARENTAL EDUCATION AND COHORT Source: Derived from models in Table 2.1 with interaction term included. 0 5 10 15 20 25 30 Cohort '98 Cohort '08 % Male Female 0 5 10 15 20 25 30 Cohort '98 Cohort '08 % Junior Cert. Leaving Cert. Post-secondary Degree Trends in the profile of young people with disabilities | 21 FIGURE 2.4 PREDICTED PERCENTAGE WITH A DISABILITY BY SOCIAL CLASS AND COHORT Source: Derived from models in Table 2.1 with interaction term included. In sum, there has been a growth in disability prevalence across all social groups in terms of parental education and class, but a greater increase in prevalence among girls than boys. This has resulted in there being no significant gendering of disability rates among Cohort ’08. While overall levels of disability are broadly similar for boys and girls in Cohort ’08, significant differences are evident in the types of difficulties or conditions reported. Boys are significantly more likely than girls to have an intellectual or general learning disability, to experience difficulties learning, remembering or concentrating, and, to some extent, to have any other illness/disability (Figure 2.5). They are also more likely to have multiple difficulties than girls. Girls are slightly more likely to have a sensory impairment but are much more likely than boys to have a psychological, emotional or mental health difficulty. Because of changes in the type of condition captured between cohorts (see Chapter 1), it is difficult to determine which conditions have increased more in girls over time. However, the patterns suggest that increased emotional or mental health difficulties among girls may underlie this gender shift (see Section 2.3 for further detail on levels of socio-emotional difficulties and depression). 0 5 10 15 20 25 30 35 40 Cohort '98 Cohort '08 % Professional Managerial Other non-manual Skilled manual Semi/unskilled Non-employed 22 | Trends in disability prevalence among young people FIGURE 2.5 TYPE OF CONDITION AMONG THOSE WITH A DISABILITY (THAT IS, HAMPERED BY THAT CONDITION) BY GENDER, COHORT ’08 Source: GUI Cohort ’08. Note: Percentages total to more than 100 as more than one condition or difficulty can be reported. 2.3 HEALTH AND WELLBEING BY DISABILITY STATUS This section looks at the extent of overlap between disability status and three measures of health and wellbeing at age 13: physical health, as reported by the young person’s mother; depressive symptoms, as reported by the young person; and socio-emotional difficulties, as reported by the mother. If identification of those with an LLC or disability has increased over time (without any shift in the underlying conditions), then we would expect that the differences between those with an LLC/disability and others would reduce between cohorts. For reasons of statistical disclosure, the measure of physical health has been recoded into two groups: very healthy, no problems; and at least some problems. 8 Figure 2.6 shows that the prevalence of health problems declines between cohorts, from 39 to 28 per cent. For both cohorts, health problems are more prevalent among those who have an LLC (but are not hampered) and, more markedly, those with a disability. Thus, the gap in health status increases between those with a disability and others over time. However, it is also worth noting that a very significant proportion of those who are hampered by a disability (37 per cent for Cohort ’98 and 45 per cent for Cohort ’08) are described as being ‘very healthy, no problems’. 8 This combines the categories ‘healthy, but a few minor problems’, ‘sometimes quite ill’ and ‘almost always unwell’. The latter categories become too small to report when broken down by disability status. 20.8 33.2 40 52 29.5 38 24.9 31.4 26.9 37.1 37.8 33.2 0 20 40 60 Sensory impairment Physical impairment Intellectual/general learning disability Learning/ remembering/ concentrating Psychological/ emotional/ mental health Any other illness/disability % Male Female Trends in the profile of young people with disabilities | 23 FIGURE 2.6 PERCENTAGE HAVING AT LEAST SOME HEALTH PROBLEMS BY DISABILITY STATUS AND COHORT AT AGE 13 Source: GUI Cohorts ’98 and ’08. For both cohorts, the Center for Epidemiological Studies-Depression (CES-D) measure of depressive symptoms was administered to 13-year-olds on a selfcomplete basis. There is no significant difference in average score between cohorts, but this obscures important differences by gender: scores increased for girls over time but decreased for boys. For this reason, Figure 2.7 breaks down average depression scores by disability status, gender and cohort. For males and females in both cohorts, the highest average depression levels are found among those with a disability. Among girls, depression levels are higher among the nonhampered LLC group than among those with neither an LLC nor a disability. However, this difference is less marked for boys, for whom the main distinction is between those with a disability and all others. Depression scores increased over time for all groups of girls but this growth is very marked for girls with a disability. 36.6 18.3 40.9 32.5 62.9 54.3 38.6 28.4 0 20 40 60 80 Cohort '98 Cohort '08 % Neither Non-hampered LLC Disability Total 24 | Trends in disability prevalence among young people FIGURE 2.7 MEAN DEPRESSION SCORE (CES-D) BY GENDER, DISABILITY STATUS AND COHORT Source: GUI Cohorts ’98 and ’08. FIGURE 2.8 MEAN LEVEL OF SOCIO-EMOTIONAL DIFFICULTIES (SDQ SUBSCALES) BY DISABILITY STATUS AND COHORT: BOYS Source: GUI Cohorts ’98 and ’08. Figures 2.8 and 2.9 show the average level of socio-emotional difficulties, measured using the Strengths and Difficulties Questionnaire (SDQ), for boys and girls respectively, broken down by disability status. 9 Boys in the non-hampered LLC group have higher levels of conduct, emotional and hyperactivity problems than those with neither an LLC nor a disability, while levels are even higher for those with a disability. The pattern of change over time varies between different types 9 The SDQ is a widely used measure of socio-emotional difficulties internationally. It includes five subscales – four capturing difficulties around conduct, hyperactivity, emotional and peer relations, and one capturing a positive element of prosocial behaviour. The total difficulties score includes the four subscales capturing difficulties. 5.0 6.7 4.0 7.1 5.2 7.2 4.2 8.2 6.6 7.7 5.5 10.5 0 4 8 12 Male Female Male Female Cohort '98 Cohort '08 CES-D scale Neither Non-hampered LLC Disability 1.0 0.8 1.4 1.6 2.7 2.5 1.4 1.1 2.2 2.0 4.1 3.3 2.0 1.7 3.5 3.7 4.9 5.4 0 2 4 6 Cohort '98 Cohort '08 Cohort '98 Cohort '08 Cohort '98 Cohort '08 Conduct Emotional Hyperactivity SDQ subscale score Neither Non-hampered LLC Disability Trends in the profile of young people with disabilities | 25 of socio-emotional difficulties. The reported level of conduct difficulties declines between cohorts for all groups of boys, including those with a disability. For emotional difficulties, levels increase slightly for those with a disability and for those without an LLC/disability, but decline slightly for those in the non-hampered LLC group. In contrast, hyperactivity levels increase markedly for those with a disability while they decline for both the non-hampered LLC and the nonLLC/disability groups. As a result, the gap in emotional and hyperactivity difficulties between boys with a disability and others increases over time, while those with an LLC but who are not hampered come to more closely resemble the nonLLC/disability group. FIGURE 2.9 MEAN LEVEL OF SOCIO-EMOTIONAL DIFFICULTIES (SDQ SUBSCALES) BY DISABILITY STATUS AND COHORT: GIRLS Source: GUI Cohorts ’98 and ’08. For girls, socio-emotional difficulties are greater among those with a disability but the differences between the non-hampered LLC and disability groups are marginal for all three subscales for Cohort ’98. Conduct difficulties decline among the ‘neither’ and non-hampered LLC groups, but remain stable for those with a disability. Emotional difficulties increase very markedly for girls with a disability, while levels decline for those in the non-hampered LLC group and increase slightly for the ‘neither’ group. Hyperactivity levels decline for the non-hampered LLC and ‘neither’ groups but increase very slightly for those with a disability. As for boys, the gap between the non-hampered LLC group and those without an LLC/disability seems to narrow over time, meaning a greater difference in difficulty levels between the disability group and all others. 1.0 0.8 1.9 2.1 2.1 1.9 1.6 1.1 3.0 2.5 3.8 2.7 1.7 1.7 3.1 4.6 3.9 4.0 0 1 2 3 4 5 Cohort '98 Cohort '08 Cohort '98 Cohort '08 Cohort '98 Cohort '08 Conduct Emotional Hyperactivity SDQ subscale score Neither Non-hampered LLC Disability 26 | Trends in disability prevalence among young people FIGURE 2.10 MEAN LEVEL OF SOCIO-EMOTIONAL DIFFICULTIES (SDQ TOTAL DIFFICULTIES) BY DISABILITY STATUS AND COHORT: BOYS Source: GUI Cohorts ’98 and ’08. FIGURE 2.11 MEAN LEVEL OF SOCIO-EMOTIONAL DIFFICULTIES (SDQ TOTAL DIFFICULTIES) BY DISABILITY STATUS AND COHORT: GIRLS Source: GUI Cohorts ’98 and ’08. These three subscales, along with a measure of peer difficulties, can be summed to give an overall measure of total socio-emotional difficulties (Figures 2.10 and 2.11). Among both boys and girls, there is a marked decline in difficulties among those with an LLC but who are not hampered by it. For those without an LLC/disability, difficulties decline slightly for boys but remain stable for girls. Among those with a disability, difficulties increase for both genders but do so much more markedly for girls. 6.1 9.3 13.2 5.9 7.9 13.4 0 4 8 12 16 Neither Non-hampered LLC Disability SDQ score Cohort '98 Cohort '08 5.9 10.1 10.5 5.9 7.7 12.7 0 4 8 12 16 Neither Non-hampered LLC Disability SDQ score Cohort '98 Cohort '08 Trends in the profile of young people with disabilities | 27 FIGURE 2.12 PERCENTAGE WITH A ‘PROBLEMATIC’ OR ‘BORDERLINE’ SDQ SCORE (14 OR MORE) BY GENDER, DISABILITY STATUS AND COHORT Source: GUI Cohorts ’98 and ’08. The analyses so far have looked at average SDQ scores, but it is possible to separate out the group that have ‘problematic’ or ‘borderline’ scores (14 or more) to distinguish those for whom socio-emotional difficulties are likely to be more consequential. High scores are most common among those with a disability and lowest among those without an LLC/disability, with over four in ten of those with a disability having high scores among Cohort ’08 (Figure 2.12). The pattern is slightly different for girls in Cohort ’98, where problematic SDQ levels were similarly high among those in the non-hampered LLC and the disability groups. As with average SDQ scores, being in the high-score group becomes less prevalent over time for the non-hampered LLC group, for both girls and boys. In contrast, the chances of being in the high-score group increases for both girls and boys with a disability, with a very large increase evident for girls. 2.4 CONCLUSIONS This chapter has looked at the profile of young people by disability status and the extent of overlap between having an LLC or disability and key dimensions of health and wellbeing. There has been a shift in the gender profile of those who have an LLC or disability, with this being more common among boys than girls in Cohort ’98; a decade later, for Cohort ’08, no marked gender differences are evident. While it is difficult to determine what accounts for this shift, the evidence on socioemotional difficulties suggests that the pattern relates to an increase in emotional difficulties among girls. This trend is consistent with the disproportionate increase in socio-emotional difficulties previously found among girls in several countries, 7.6 76.8 6.8 21.2 14.7 27.7 14.6 40.7 46.3 26.3 42.5 0 10 20 30 40 50 Cohort '98 Cohort '08 Cohort '98 Cohort '08 Boys Girls % Neither Non-hampered LLC Disability 28 | Trends in disability prevalence among young people including Ireland (Daly, 2022; Nilsen et al., 2024; Potrebny et al., 2024; Dooley et al., 2019). 10 There has been a growth in disability prevalence among all social groups over the decade studied. However, disability prevalence varies by some family background factors, with higher rates of disability found among young people from lone-parent families and those living in rented accommodation. Lower rates of disability or LLC are found among those from migrant-origin families. International studies have highlighted differences in the prevalence of disability among migrant-origin children, depending on the country studied (Morinaga et al., 2021; Gao et al., 2022) or by type of condition within the same country (Hansen et al., 2023). There are no consistent explanations for any such differences, which may be due to crosscultural differences in the identification of disabilities or to less insider knowledge among migrant-origin parents in how to access supports or diagnoses. Evidence on migrant-origin adults in Ireland indicates that they are less likely to access GP or consultant services (Barlow et al., 2021), a pattern that may also influence diagnosis of conditions for children and young people. Among Cohort ’08, just over half of those with a disability and one-third of those in the non-hampered LLC group are reported to have at least some health problems, a lower level than was the case for Cohort ’98. In contrast, high levels of socio-emotional difficulties and, for girls, average depression scores have increased over time among those with a disability. We had hypothesised that increased levels of LLC/disability might reflect greater identification of conditions rather than an increase in underlying need. It does appear that both sets of factors are at play. For both boys and girls, the non-hampered LLC group seems to become more like the non-LLC/disability group over time in terms of mental health and wellbeing, supporting the identification hypothesis. However, there is a greater gap in mental health and wellbeing between those with a disability and others than previously. Furthermore, problematic levels of socio-emotional difficulties become more prevalent among those with a disability, especially among girls, suggesting increased need among this group. The trend in type of socio-emotional difficulties differs by gender: girls with a disability are more likely to have emotional difficulties and depressive symptoms than previously, while boys with a disability are more likely to have hyperactivity issues. 10 There has been little consensus on the factors potentially driving this pattern, with some studies pointing to school-related stress (Högberg et al., 2020) and others highlighting the effects of social media (Kelly et al., 2018; Haidt, 2024). Outcomes among young people with disabilities | 29 CHAPTER 3 Outcomes among young people with disabilities 3.1 INTRODUCTION This chapter looks at selected outcomes among 13-year-olds and the extent to which these vary by disability status and between cohorts. The outcomes have been selected to capture key dimensions of experiences, including the quality of relationships with parents and peers, involvement in out-of-school sports and attitudes to school. These outcomes were also chosen on the basis of differences found in earlier analyses between those with a long-lasting condition (LLC) and others (Smyth, 2024). As these earlier analyses found no differences for those with an LLC in relation to screen time and involvement in cultural activities, these outcomes are not explored further here. As discussed in Chapters 1 and 2, if identification of those with an LLC or disability has increased over time (without any shift in the underlying prevalence), then we would expect that the differences between those with an LLC/disability and others would reduce between cohorts. 3.2 RELATIONSHIPS WITH PARENTS Table 3.1 presents the results of models looking at four aspects of the parent–child relationship (measured at age 13): mother-reported conflict with the young person, father-reported conflict with the young person, whether the 13-year-old reports getting on very well with their mother and how responsive they find their mother. All of these analyses control for other factors that potentially influence relationship quality, including gender, parental education, social class, experience of financial strain, migrant status, family size and structure, urban/rural location, living in rented accommodation (private or social) and school year group. Both mothers and fathers report significantly greater levels of conflict if their child has an LLC or disability, with the highest levels found among those with a disability (Table 3.1). We are interested not only in this overall difference but also in whether the scale of the effect changed between cohorts. Interaction terms (the interaction between cohort and disability status) can be difficult to interpret from a table. Therefore, Figures 3.1 and 3.2 present the predicted patterns based on the model results for mother–child and father–child conflict, respectively. The figures show a decline in conflict levels between cohorts for all three groups. However, the decline is not statistically significant for young people with a disability (with overlapping confidence intervals around estimates). Moreover, those who have an LLC but are not hampered by it more closely resemble those without an LLC/disability among the younger cohort. 36| Trends in disability prevalence among young people FIGURE 3.7 PREDICTED PERCENTAGE OF YOUNG PEOPLE INVOLVED IN ORGANISED SPORTS AT LEAST WEEKLY BY DISABILITY STATUS ACROSS COHORTS Source: Derived from Model 2 in Table 3.4. 3.5 ATTITUDES TO SCHOOL The 13-year-olds were asked how they felt about school in general, with higher values indicating more negative attitudes. Attitudes to school are more negative among those who have an LLC but are not hampered by it and even more negative among those with a disability (Table 3.5). Attitudes become more negative between cohorts (see the cohort coefficient in Table 3.5). Figure 3.8 shows what the predicted patterns look like for the group who like school very much. Attitudes become less positive for all groups, though the decrease is less for those in the nonhampered LLC group. TABLE 3.5 ORDINAL LOGIT MODEL OF NEGATIVE ATTITUDES TO SCHOOL AT AGE 13 AND CHANGES OVER TIME (BASE GROUP: LIKE SCHOOL VERY MUCH) (ODDS RATIOS) Model 1 Model 2 Cohort ’08 1.191** 1.192** Disability status: Not hampered by LLC Disability (hampered by LLC) (Ref. Neither) 1.366*** 2.058*** 1.414** 1.891*** Disability*Cohort ’08: Not hampered Hampered 0.931 1.111 Pseudo R2 0.024 0.024 N 11,653 11,653 Source: GUI Cohorts ’98 and ’08. Notes: All of the models control for gender, parental education, social class, experience of financial strain, migrant status, family size and structure, urban/rural location and living in rented accommodation (private or social). *** significant at the p<.001 level, ** p<.01, * p<.05, ± p<.10. 50 60 70 80 Cohort '98 Cohort '08 % Neither Non-hampered LLC Disability Outcomes among young people with disabilities | 37 FIGURE 3.8 PREDICTED PERCENTAGE OF YOUNG PEOPLE WHO LIKE SCHOOL VERY MUCH BY DISABILITY STATUS ACROSS COHORTS Source: Derived from Model 2 in Table 3.5. 3.6 CONCLUSIONS This chapter has looked at key outcomes in the domains of relationships with parents and peers, involvement in out-of-school activities and attitudes to school. Clear differences are evident: young people with an LLC or disability have more conflictual relationships with their parents, smaller peer networks, greater difficulties interacting with peers, less involvement in organised sports and more negative attitudes to school compared to their peers. The only dimension where these differences are not as strong relates to a young person’s own perspective on their relationship with their mother. Comparing the two GUI cohorts, some aspects of young people’s lives have become more positive over the decade, with less conflict with parents and greater sports involvement, while other aspects have become somewhat more negative, with smaller circles of friends and slightly less positive attitudes to school (Smyth, 2024). Chapters 1 and 2 have shown a significant shift in the size and profile of those with an LLC or disability between cohorts. If this relates to increased identification (without any shift in the underlying prevalence), then we would expect that the differences between those with an LLC/disability and others would reduce between cohorts. For several of these outcomes, a decline in differences between groups is apparent for the group who have an LLC but are not hampered by it, with these young people more closely resembling those without an LLC or disability in the recent cohort. This may relate to increasing identification of LLCs that do not impinge on day-to-day activities. However, it should be noted that other factors, such as more inclusive practice in schools or greater societal awareness of illness and disability, may have also made a difference. In contrast, across most of the outcomes explored, there remains a substantial and growing gap between those with a disability and those without an LLC/disability, indicating no increased inclusion and/or greater severity of need among this group. 0 10 20 30 40 Cohort '98 Cohort '08 % Neither Non-hampered LLC Disability 38 | Conclusions and implications for policy CHAPTER 4 Conclusions and implications for policy 4.1 INTRODUCTION This report draws on analyses of the two cohorts of the Growing Up in Ireland (GUI) study to examine trends in the prevalence of disability among 13-year-olds over the decade 2011/2012 to 2021/2022. The study was prompted by previous analyses of GUI data (Smyth, 2022, 2024), which showed a significant increase in the number of 9and 13-year-olds reported to have a long-lasting condition (LLC) or disability. The analyses distinguish between young people who have an LLC and are hampered, at least to some extent, by that condition (the disability group), those who have an LLC but are not hampered by it (the non-hampered LLC group) and those without an LLC/disability. The report looks at changes over time in the size and composition of these groups, as well as the presence of socio-emotional difficulties and/or depressive symptoms among these groups. Growing numbers of those with an LLC or disability may reflect greater identification of conditions over time and/or greater prevalence. In order to examine these competing explanations, we look at the consequences of having an LLC or disability for a number of adolescent outcomes, including relationships with parents and peers, day-to-day activities and attitudes to school. 4.2 THE PREVALENCE OF LONG-LASTING CONDITIONS AND DISABILITY The prevalence and profile of disability are highly dependent on the definitions and measures used (Hagerman and Houtrow, 2020; Panagi et al., 2022). Estimation is made all the more challenging by changes in the measures used in GUI between cohorts and between survey waves within cohorts. These changes reflect a broader shift in the understanding of disability in society, with a move away from a focus on diagnostic categories towards a social model of disability that emphasises functioning in particular contexts or environments (see, for example, Fovet, 2023). Based on mother reports, the proportion of 13-year-olds with an LLC (whether or not they are hampered by it) has increased from 24 per cent for Cohort ’98 to 36 per cent for Cohort ’08. As well as being asked about the presence of conditions, mothers were asked about whether their child had received a diagnosis for that condition. The proportion of the total cohort who had received at least one diagnosis increased from 16 per cent for Cohort ’98 to 31 per cent for Cohort ’08. The group with a disability (that is, an LLC that hampers their activities at least to some extent) grew from 6 per cent for Cohort ’98 to 23 per cent for Cohort ’08. A growth in the prevalence of disability is also evident in Census figures, though Census estimates tend to be lower than those based on GUI data (see also Banks and McCoy, 2011; Whelan et al., 2021). Trends in disability prevalence among young people | 39 There has been a growth in the prevalence of disability and LLCs among all social groups over the period 2011/2012 to 2021/2022. There has been a shift in the gender composition of these groups, with having an LLC or disability being more common among boys than girls in Cohort ’98 but no marked gender differences evident a decade later. While it is difficult to determine what accounts for this shift on the basis of available data, the evidence on socio-emotional difficulties suggests that the pattern relates to an increase in emotional difficulties among girls. A disproportionate increase in depressive symptoms and anxiety among girls has been found in earlier Irish research (Dooley et al., 2019), as well as in research from a number of other Western countries (Durbeej et al., 2019; Nilsen et al., 2024). Changes in the classification of types of conditions, alongside small sample sizes for several groups, make it challenging to look at which particular conditions are driving the overall increase. Among those with an LLC who are not hampered by the condition, there is an increase in both respiratory and behavioural difficulties, the largest groups, over time. The increase is particularly marked for behavioural difficulties, increasing from 1 to 17 per cent between cohorts at age 13. The proportion with an emotional/behavioural disability that hampers their activities has increased from 1.1 per cent of the total cohort in Cohort ’98 to 13.5 per cent in Cohort ’08. Principals report a corresponding increase in the prevalence of emotional and behavioural difficulties in their school, with over ten per cent of principals now reporting that one-quarter or more of their students have such difficulties. 4.3 DISABILITY, HEALTH AND WELLBEING Three aspects of health and wellbeing were explored: mother reports of the young person’s general health; mother reports of socio-emotional difficulties (measured using the Strengths and Difficulties Questionnaire (SDQ)); and young person reports of depressive symptoms. For both cohorts, health problems are more prevalent among those with an LLC and, more markedly, those with a disability, than among those with neither. However, it is worth noting that around four in ten of those who are hampered by a disability are described as being ‘very healthy, no problems’. Problematic levels of socio-emotional difficulties and, for girls, average depression scores are found to have increased over time among those with a disability, indicating no diminution of need among the group. In contrast, the nonhampered LLC group seems to become more like the group with neither an LLC or disability over time in terms of mental health and wellbeing, suggesting that there may be greater identification of LLCs that do not generally hamper the lives of young people. 4.4 DISABILITY AND ADOLESCENT OUTCOMES The study examines differences by disability status in relationships with parents and peers, involvement in organised sports and attitudes to school. Clear 40 | Conclusions and implications for policy differences in adolescent outcomes are evident: young people with an LLC or disability have more conflictual relationships with their parents, smaller peer networks, greater difficulties interacting with peers, less involvement in organised sports and more negative attitudes to school compared to their peers. The only outcome analysed where differences are not as strong relates to a young person’s own perspective on their relationship with their mother. Growth in the prevalence of LLCs or disabilities may reflect two processes. The first is an increased identification of conditions as a result of greater awareness among parents, doctors, teachers and other practitioners. The second is a greater prevalence of certain conditions and/or higher levels of need. The study findings point to both sets of factors being at play. Increased identification should mean that the group with an LLC or disability would become more heterogeneous in profile. This appears to be the case for those with an LLC but who are not hampered by it. They come to more closely resemble the non-LLC/disability group over time in relation to several outcomes, including socio-emotional difficulties. Of course, it may be the case that other factors, such as more inclusive practice in schools or greater societal awareness of illness/disability, may have also helped to reduce the extent to which young people are hampered by their condition. In contrast, there remains a substantial and growing gap between those with a disability and those without an LLC/disability, indicating that growing prevalence reflects the presence of conditions that impact on young people’s day-to-day lives. 4.5 IMPLICATIONS FOR POLICY The study findings point to a significant growth over time in the proportion of 13year-olds reported to have an LLC or disability, with an increase evident across all social groups but a greater increase for girls than boys. The most commonly reported difficulties among those with a disability now relate to physical impairment and difficulties learning, remembering or concentrating, conditions that have different implications for the resources and supports required to enhance the inclusion of these young people. The evidence points to a greater identification of long-lasting illnesses or conditions that do not hamper young people’s day-to-day lives, with this group coming to more closely resemble their peers without an LLC/disability in terms of their socio-emotional wellbeing and mental health, relationships, activities and school engagement. In contrast, there are clear levels of need, including increasing need in some domains, among young people with a disability in terms of their socio-emotional wellbeing as well as their social and educational outcomes. The study findings have implications for a range of policy areas, including disability, health, education, family support and recreation, and suggest the importance of a joined-up approach in promoting the full inclusion of young people with a disability. While there has been a good deal of policy development in relation to Trends in disability prevalence among young people | 41 inclusive practice, the findings point to a number of areas for further development. There has been considerable policy development around Supporting Parents, the new national model for parenting support services (DCEDIY, 2022). The findings suggest the need to target supports towards families of children and teenagers with a disability, given the higher levels of parent–child conflict evident in these contexts. Using data on Cohort ’98 at nine years of age, Banks et al. (2018) highlighted how attending a mainstream school is not sufficient to ensure social integration, with fewer friends among those with a special educational need (SEN), particularly those with emotional–behavioural problems. They suggested the need for a greater emphasis on school-based efforts to promote integration. Fourteen years later, young people with a disability still have fewer friends and are more likely to have difficulties interacting with peers (as reported by their mothers). Further research could usefully explore which groups of young people experience greater difficulties and examine whether these processes reflect social distance or experience of more negative behaviour like bullying. School and classroom climate are crucial too in promoting greater school engagement among young people with a disability (see McCoy and Banks, 2012), given the more negative attitudes to school shown here and less positive attitudes to core school subjects shown in Smyth (2024). The findings on the low levels of involvement in sport among young people with a disability suggest the importance of inclusive practice in out-ofschool as well as in-school provision and the need to address attitudinal barriers and lack of choice of suitable activities (see Sport Ireland, 2022). This is all the more important given the role that sport and physical exercise can play in promoting socio-emotional wellbeing as well as physical health. 42 | References REFERENCES Anthony, R., G. Moore, N. Page, C. Ollerhead, J. Parker, S. Murphy, F. Rice, J.M. Armitage and S. Collishaw (2023). ‘Trends in adolescent emotional problems in Wales between 2013 and 2019: The contribution of peer relationships’, Journal of Child Psychology and Psychiatry, advance online publication. Arabiat, D.H., L. Whitehead and M. Al Jabery (2018). ‘The 12‐year prevalence and trends of childhood disabilities in Australia: Findings from the survey of disability, aging and carers’, Child: Care, Health and Development, Vol. 44, No. 5, pp. 697–703. Armitage, J.M., A.S. Kwong, F. Tseliou, R. Sellers, R. Blakey, R. Anthony, F. Rice, A. Thapar and S. Collishaw (2023). ‘Cross-cohort change in parent-reported emotional problem trajectories across childhood and adolescence in the UK’, The Lancet Psychiatry, Vol. 10, No. 7, pp. 509–517. Banks, J. and S. McCoy (2011). A study on the prevalence of special educational needs, Dublin: National Council for Special Education. Banks, J., S. McCoy and D. Frawley (2018). ‘One of the gang? Peer relations among students with special educational needs in Irish mainstream primary schools’, European Journal of Special Needs Education, Vol. 33, No. 3, pp. 396–411. Barlow, P., G. Mohan and A. Nolan (2021). Use of healthcare services by adults in Ireland from different countries of origin, Dublin: Economic and Social Research Institute. Baumgarten, F., S. Junker and R. Schlack (2023). ‘Prevalence and time trends of selfreported mental health problems among children and adolescents between 11 and 17 years in the KiGGS study’, Zeitschrift für Kinder-und Jugendpsychiatrie und Psychotherapie, Vol. 51, No. 4, pp. 311–320. Brzyska, B. (2018). ‘Trends in exclusion rates for students with special educational needs within PISA’, Oxford Review of Education, Vol. 44, No. 5, pp. 633–650. Daly, M. (2022). ‘Prevalence of depression among adolescents in the US from 2009 to 2019: Analysis of trends by sex, race/ethnicity and income’, Journal of Adolescent Health, Vol. 70, No. 3, pp. 496–499. De Looze, M.E., A.P. Cosma, W.A. Vollebergh, E.L. Duinhof, S.A. De Roos, S. van Dorsselaer, M.J.H. van Bon Martens, R. Vonk and G.W.J.M. Stevens (2020). ‘Trends over time in adolescent emotional wellbeing in the Netherlands, 2005–2017: Links with perceived schoolwork pressure, parent-adolescent communication and bullying victimization’, Journal of Youth and Adolescence, Vol. 49, No. 10, pp. 2124–2135. DCEDIY (2022). Supporting parents: A national model of parenting support services, Dublin: Department of Children, Equality, Disability, Integration and Youth. Department of Education (2023). Education indicators for Ireland, Dublin: Department of Education. Dooley, B., C. O’Connor, A. Fitzgerald and A. O’Reilly (2019). My World Survey 2: The national study of youth mental health in Ireland, Dublin: Jigsaw, University College Dublin. Trends in disability prevalence among young people | 43 Durbeej, N., K. Sörman, E. Norén Selinus, S. Lundström, P. Lichtenstein, C. Hellner and L. Halldner (2019). ‘Trends in childhood and adolescent internalizing symptoms: Results from Swedish population based twin cohorts’, BMC psychology, Vol. 7, pp. 1–10. Fovet, F. (2023). ‘Shifting the inclusion agenda away from a politico-historical adherence to deficit model practices: Potential of universal design for learning,’ in J. Banks (ed.), The inclusion dialogue: debating issues, challenges and tensions with global experts, New York: Routledge. Gao, X., Y. Zhao, N. Wang and L. Yang (2022). ‘Migration modulates the prevalence of ASD and ADHD: A systematic review and meta-analysis’, BMC psychiatry, Vol. 22, No. 1, p. 395. Hagerman, T.K. and A.J. Houtrow (2020). ‘Variability in prevalence estimates of disability among children in the National Survey of Children’s Health’, JAMA Pediatrics, Vol. 175, No. 3, pp. 307–310. Haidt, J. (2024). The anxious generation, London: Penguin. Hansen, T.M., S. Qureshi, A. Gele, L.J. Hauge, G.P. Biele, P. Surén and M. Kjøllesdal (2023). ‘Developmental disorders among Norwegian-born children with immigrant parents’, Child and Adolescent Psychiatry and Mental Health, https://doi.org/10.1186/s13034-022-00547-x. Högberg, B., M. Strandh and C. Hagquist (2020). ‘Gender and secular trends in adolescent mental health over 24 years – The role of school-related stress’, Social science & medicine, Vol. 250, 112890. Kelly, Y., A. Zilanawala, C. Booker and A. Sacker (2018). ‘Social media use and adolescent mental health: Findings from the UK Millennium Cohort Study’, EClinicalMedicine, Vol. 6, pp. 59–68. Lai, D.C., Y.C. Tseng and H.R. Guo (2013). ‘Trends in the prevalence of childhood disability: Analysis of data from the national disability registry of Taiwan, 2000– 2011’, Research in Developmental Disabilities, Vol. 34, No. 11, pp. 3766–3772. McConkey, R. (2020). ‘The increasing prevalence of school pupils with ASD: Insights from Northern Ireland’, European Journal of Special Needs Education, Vol. 35, No. 3, pp. 414–424. McConkey, R., S. Craig and C. Kelly (2019). ‘The prevalence of intellectual disability: A comparison of national census and register records’, Research in Developmental Disabilities, Vol. 89, pp. 69–75. McCoy, S. and J. Banks (2012). ‘Simply academic? Why children with special educational needs don’t like school’, European Journal of Special Needs Education, Vol. 27, No. 1, pp. 81–97. McElroy, E., M. Tibber, P. Fearon, P. Patalay and G.B. Ploubidis (2023). ‘Socioeconomic and sex inequalities in parent‐reported adolescent mental ill‐health: Time trends in four British birth cohorts’, Journal of Child Psychology and Psychiatry, Vol. 64, No. 5, pp. 758–767. McElroy, E., C. Courtney, G. Adamson, L. Taggart, P. Mulhall, F. Ferry, J. Murphy and U. O’Connor Bones (2023). ‘Exploring the effects of socio-economic inequalities on 44 | References health and disability in Northern Irish adolescents: Evidence from a nationally representative longitudinal study’, Longitudinal and Life Course Studies, Vol. 14, No. 1, pp. 138–148. Morinaga, M., D. Rai, A.C. Hollander, N. Petros, C. Dalman and C. Magnusson (2021). ‘Migration or ethnic minority status and risk of autism spectrum disorders and intellectual disability: Systematic review’, European Journal of Public Health, Vol. 31, No. 2, pp. 304–312. Murray, A, D. Watson, A. Nolan, B. Duggan, E. McNamara, D. O’Mahony, E. Smyth, E. and A. Quail (2023). Design, instrumentation and procedures for Cohort ’08 of Growing Up in Ireland at 13 years old (Wave 6), Dublin: Department of Children, Equality, Disability, Integration and Youth, Economic and Social Research Institute, Trinity College Dublin. NCSE (2024). An inclusive education for an inclusive society, Trim: NCSE. Nilsen, S.A., K.M. Stormark, L. Bang, G.S. Brunborg, M.H. Larsen and K. Breivik (2024). ‘Trends in adolescent depressive symptoms from 2010 to 2019 in Norway: Real increase or artifacts of measurements?’, https://osf.io/preprints/psyarxiv/4g8hu. Panagi, L., S.R. White, S. Patel, S. Bennett, R. Shafran and T. Ford (2022). ‘The importance of definitions in the measurement of long‐term health conditions in childhood. Variations in prevalence of long‐term health conditions in the UK using data from the Millennium Cohort Study, 2004–2015’, International Journal of Methods in Psychiatric Research, Vol. 31, No. 4, e1926. Patalay, P. and S.H. Gage (2019). ‘Changes in millennial adolescent mental health and health-related behaviours over 10 years: A population cohort comparison study’, International Journal of Epidemiology, Vol. 48, No. 5, pp. 1650–1664. Potrebny, T., S.A. Nilsen, A. Bakken, T. von Soest, K. Kvaløy, O. Samdal, B. Sivertsen, H. Aase and L. Bang (2024). ‘Secular trends in mental health problems among young people in Norway: A review and meta-analysis’, European Child and Adolescent Psychiatry, pp. 1–13. Read, J., C. Blackburn and N. Spencer (2010). ‘Disabled children in the UK: A quality assessment of quantitative data sources’, Child: Care, Health and Development, Vol. 36, No. 1, pp. 130–141. Riehm, K.E. and R. Mojtabai (2022). ‘Trends in parent-rated emotional symptoms, conduct problems and hyperactivity/inattention among US children and adolescents, 2004– 2019’, Journal of Affective Disorders, Vol. 299, pp. 294–297. Smyth, E. (2022). The changing social worlds of 9-year-olds, Dublin: Economic and Social Research Institute. Smyth, E. (2024). The changing social worlds of 13-year-olds, Dublin: Economic and Social Research Institute. Sport Ireland (2022). Sport Ireland policy on diversity and inclusion in sport, Dublin: Sport Ireland. Thornton, M., J. Williams, C. McCrory, A. Murray and A. Quail (2016). Design, instrumentation and procedures for the Child Cohort at Wave Two (13 years), Trends in disability prevalence among young people | 45 Dublin: Economic and Social Research Institute, Trinity College Dublin, Department of Children and Youth Affairs. Whelan, A., A. Bergin, A. Devlin, A. Garcia Rodriguez, S. McGuinness, I. Privalko and H. Russell (2021). Measuring childhood disability and AIM programme provision in Ireland, Dublin: Economic and Social Research Institute. Wolf, K. and J. Schmitz (2024). ‘Scoping review: Longitudinal effects of the COVID-19 pandemic on child and adolescent mental health’, European Child and Adolescent Psychiatry, Vol. 33, No. 5, pp. 1257–1312. Zablotsky, B., L.I. Black, M.J. Maenner, L.A. Schieve, M.L. Danielson, R.H. Bitsko, S.J. Blumberg, M.D. Kogan and C.A. Boyle (2019). ‘Prevalence and trends of developmental disabilities among children in the United States: 2009– 2017’, Pediatrics, Vol. 144, No. 4, e20190811.