The Impact of Disability on the Lives of Young Children: Analysis of Growing Up in Scotland Data

Executive Summary

This research project was commissioned by Scottish Government Children and Families Analysis with the objective of undertaking an in-depth analysis of data from the Growing Up in Scotland study (GUS) to examine the circumstances and outcomes of children living with a disability in Scotland. The overall aim of this analysis was to explore the impact of disability on the child, their parents and the wider family unit.

GUS is an important longitudinal research project aimed at tracking the lives of several cohorts of Scottish children through the early years and beyond. The study is funded by the Scottish Government and carried out by ScotCen Social Research. GUS launched in 2005 with two cohorts of children - around 3000 born in 2002/03 (the child cohort) and around 5000 born in 2004/05 (the first birth cohort). A further cohort of 6000 children born in 2010/11 (the second birth cohort) was recruited to the study in 2011. Each sample is nationally representative of all children born in Scotland in the corresponding year.

This report presents analysis of data on the children and families in the first birth cohort. Data was first collected on this cohort when the child was aged 10 months old. The children and their families were then followed via annual 'sweeps' of data collection until the child was aged 6 (in 2011/12). The data included here refers to the point at which the children were aged 10 months, three years old and five years old.

Defining disability

The analysis sought to adopt a definition of disability in line with both The Equality Act 2010 ("A person has a disability…if he has a physical or mental impairment which has a substantial and long-term adverse effect on his ability to carry out normal day to day activities") while also accounting for other definitions of disability, including additional educational support needs.

For the initial analysis children were therefore defined as disabled if their main carer had answered 'yes' to the following question:

Does ^ChildName have any longstanding illness or disability? By longstanding I mean anything that has troubled ^him over a period of time or that is likely to affect ^him over a period of time?^[1]

And from age three onwards, those who answered 'yes' to the following question were also included:

When we spoke to you last time you said that ^ChildName had a longstanding illness or disability. Can I just check does ^ChildName still have this longstanding illness or disability?

Further analysis was also carried out using an additional definition of 'limiting' disability where, from age 2 onwards, parents had also answered 'yes' to the following question:

Does this/Do these condition(s) or health problem(s) limit him/her at play or from joining in any other activity normal for a child his/her age?

12% of children (n=690) were reported as having a disability at 10 months of age. This increased with age; by age six, 19% (n=680) of children were reported to have a disability. 2% of children (n = 94) had a limiting disability at age 2. This had increased slightly to 5% (n = 167) at age 6.

Overall findings

The analysis found clear differences between disabled and non-disabled children. However, the broad definition applied to disability means that differences are not huge. Some of the largest distinctions are in relation to socio-economic characteristics and it appears that these socio-economic differences are, to a large extent, driving the many other differences between these children. After controlling for variations in socio-economic characteristics, disability was only associated with one of the outcomes and experiences considered in the multivariate analyses - poorer social, emotional and behavioural development. Even after using a more focussed definition, restricting the analysis to children with limiting disability, only a small number of independent associations were found - with low warmth in the parent-child relationship, high parenting stress and poorer child social, emotional and behavioural development.

Demographics

Disability is closely associated with socio-economic circumstances being significantly more common amongst children from more disadvantaged circumstances. This is important because, in the remainder of the analysis, it is this underlying distinction between disabled and non-disabled children which appears to be driving many of the other differences between them.

• A significantly higher proportion of disabled children than non-disabled children lived in the most deprived areas of Scotland.
• At ages three and five, disabled children were more likely than non-disabled children to be living in households in the lowest income quintile. For example, at age five, 31% of disabled children lived in a household in the lowest income quintile compared with 22% of non-disabled children.
• A higher proportion of children with a disability than non-disabled children had parents who were not in paid work.
• Children with a disability were less likely to be living in owner-occupied accommodation than children without a disability

Pregnancy and birth

• A higher proportion of mothers with disabled children had an illness or other problem during pregnancy that required medical attention or treatment (49% compared with 37%).
• Mothers with disabled children were slightly more likely to have smoked during pregnancy than those with non-disabled children. There were no differences in alcohol consumption.
• 31% of disabled children were born weeks early compared with 22% of non-disabled children, while 39% were born late compared with 46% of non-disabled children.
• A higher proportion of children with a disability at 10 months had spent time in a special care baby unit or neonatal unit after they were born compared with children without a disability. 11% of children with a disability had spent seven or more days in such a unit compared with 4% of children without a disability.

After controlling for socio-economic characteristics, the key factors associated with having a disability at 10 months were: having spent time in a special care unit or neonatal unit; maternal ill health during pregnancy; being a boy; and the baby arriving 'weeks' early.

Parenting

• Mothers with non-disabled children tended to report greater 'warmth' between them and their child than mothers with disabled children. At age five, 67% of mothers with non-disabled children scored as high for the warmth of mother-child relationship compared with 59% of mothers with disabled children.
• At age two, mothers with a disabled child reported carrying out fewer activities with their child than mothers with non-disabled children. However, by age four the number of activities was approximately the same for both groups.
• When the child was aged five, mothers of disabled children were more likely to report higher levels of conflict in their relationship with the child and to exhibit a higher level of parental supervision than mothers with non-disabled children.
• There were no differences in use of smacking or in the application of rules and routines. However, at age five, households in which disabled children lived were a little more likely to be disorganised or chaotic than those of non-disabled children.

After controlling for other factors, disability was not independently associated with mother-child warmth at age five or with the level of parent-child activities. These were instead associated with factors such as parental mental wellbeing, parental stress, housing tenure, income and employment. Although not tested, it appears unlikely that disability would be independently associated with levels of conflict or parental supervision.

However, limiting disability was associated with warmth in the parent-child relationship and parenting stress. After controlling for other factors parents whose children had a limiting disability at age five were more likely to report high parenting stress and low warmth in the parent-child relationship

Child development

• Disabled children were significantly more likely than non-disabled children to have missed key developmental milestones associated with gross and fine motor skills at 10 months and age three.
• However, after controlling for key socio-economic and demographic factors, disability was not found to be independently associated with missing developmental milestones at 10 months. The main predictors were similar to those which were associated with having a disability at 10 months - in particular, early gestation and time in a special baby or neonatal unit.
• Disabled children had a lower average problem solving ability score than non-disabled children at both ages three and five. They also had a lower mean vocabulary ability score at both sweeps.

Compared with non-disabled children, disabled children tended to have a higher level of social, emotional and behavioural difficulties at ages four and five. This relationship remained after controlling for socio-economic characteristics. The strength of this association increased for children with limiting disability. The odds of children with a limiting disability at age five of having an SDQ total difficulties score in the moderate or severe range were four times higher than those of children who did not have a limiting disability.

Family structure and couple relationships

• Parents of disabled children who lived with a partner were more likely to report a less secure couple relationship than parents of non-disabled children. They were also less likely to remain as a stable couple from when the child was 10 months to age six. However, there was no independent association between disability, or limiting disability, and a less secure couple relationship.

Parental mental wellbeing

• At all three sweeps, parents of disabled children reported a lower level of mental wellbeing and a higher level of parental stress than parents with non-disabled children. But disability was not independently associated with high parental stress.

However, after controlling for other factors, parents whose children had a limiting disability at age five were more likely to report high parenting stress.

Parents' experiences of services

• At age two to four, parents of disabled children tended to report using a higher number of sources of information on their child's health and behaviour than did parents of non-disabled children.
• Just 4% of parents with disabled children reported being unable to find help on their child's health (at both ages three and four). However, this was higher than for parents with non-disabled children (1%).
• There was no significant difference between parents of disabled children and parents of non-disabled children on the number of sources of information or advice used about pre-school or primary school enrolment.
• There was also no difference in parents' satisfaction with the range of advice, information or support available about their child's start at primary school or parenting generally.
• After controlling for socio-economic characteristics, there was no independent relationship between disability, or limiting disability, and use of and satisfaction with services.

Attitudes to support

• Parents of disabled children tended to have more negative perceptions of seeking and receiving support with parenting than did parents of non-disabled children, although differences were small.
• Neither disability nor limiting disability were independently associated with reluctance or uncertainty in seeking help or support.

Childcare and pre-school

• There was no significant difference in the use of regular childcare between parents of disabled and non-disabled children. Disabled children were, however, slightly less likely to have attended pre-school (89% compared with 93%).
• Neither did parents differ in the amount of choice they felt they had when choosing childcare (at ages two and five). However, at age three a higher proportion of parents with disabled children than those with non-disabled children felt they had no choice at all.
• In addition, parents with disabled children were more likely say they had found it fairly or very difficult to arrange childcare (though most had not found it difficult).
• Parents of disabled children were less likely than parents of non-disabled children to be 'very satisfied' with their main childcare provider when the child was under five. However, at ages five and six there were no differences in satisfaction.
• Parents of disabled children were more likely to say they were not using childcare because their child needed special care. The proportion (of those not using childcare) doing so decreased from 7% at 10 months to 4% at age 5.
• Disability and limiting disability were not independently associated with any of the childcare or pre-school indicators of satisfaction or availability.

Conclusion

As noted above, using the definition applied in this report the differences between disabled and non-disabled children are not huge and it appears that the clear differences in the socio-economic characteristics between disabled and non-disabled children may be behind the many other differences between these children. After controlling for the different socio-economic characteristics of disabled and non-disabled children, disability was only associated with one of the outcomes and experiences considered in the multivariate analyses - the child's social, emotional and behavioural development. Limiting disability was also independently associated - and more strongly - with the child's social development. It was also found to be associated with lower warmth in the parent-child relationship and higher parenting stress.

Thus having a disability is linked with a greater likelihood of having early social, emotional or behavioural difficulties. In many cases the disability indicator used here will actually be identifying a long-standing condition linked to that area of the child's development. In other cases, the specific disability reported may be one which affects areas of the child's development which subsequently affect their social experience. The lower warmth in the parent-child relationship may be similarly explained; specific conditions will make parent-child interactions more challenging. Higher stress amongst parents of children with limiting disabilities is perhaps unsurprising. These parents face the daily challenges faced by all parents of young children along with those additional challenges presented by a child with a limiting condition.

Yet otherwise there is little in the data to distinguish the experiences of parents of disabled and non-disabled children. This does not correspond with research elsewhere which reports clear differences between these two groups. We do not suggest that these differences do not exist but rather that they do not occur here because of the definition of disability used, how differences in experiences were measured and the size of the sample.

The definition of disability used in the analysis was very broad, encompassing everything from asthma to mental illness. It is perhaps unsurprising that on considering, in depth, all children with any sort of disability, we find them to be quite a heterogeneous group. One obvious extension to the initial analysis conducted therefore, was to consider a more focussed definition of disability. This was done on the basis of the effects of the condition - restricting the definition to 'limiting' disability. However, even limiting disability was only found to be independently associated with a small number of outcomes associated with parenting and child development.

Further alternative definitions are possible, for example using the type of disability. In addition, using the unique longitudinal nature of GUS data, children could be distinguished in terms of whether disability was 'brief' (occurring at a single time point) or 'persistent' (occurring over multiple time points). Variations could also be considered in relation to age of onset

However disability is further defined, the key factor determining the feasibility of further analysis is the size of the resultant sub-group. With too precise a definition, the disabled sub-group will be too small for separate consideration. With too broad a definition, it appears that disability will not show any relationship with children's experiences and outcomes.

In addition, the experiences enquired about in the Growing Up in Scotland study are many and varied - designed to capture broad variations in a general population. A survey more focussed on identifying variation between the parents of disabled and non-disabled children would perhaps use questions designed to explore in a more focussed fashion, known differences between these two groups.