This paper has provided estimates of the number of children in the UK defined as disabled according to the DDA and described the circumstances of this group and their households. Before conclusions are drawn, it is important to note several features of the study.
A strength of this study is that it uses data from the FRS, a nationally representative cross-sectional survey with a high response rate and data on a relatively large number of children and young people age 0-18. The overall prevalence estimates generated therefore, are likely to be reliable and valid. As the prevalence of child disability in the UK is relatively low, however, the size of some sub-groups of disabled children was small. In total there were only 90 disabled children from black, minority ethnic or mixed parentage groups. As a result, it was only possible to provide analyses for white UK/other and black/minority ethnic/other groups rather than by individual ethnic group. It is acknowledged that such analyses are limited and fail to provide sufficient information on disabled children from particular ethnic backgrounds. To generate accurate national and local prevalence estimates and data on the circumstances of different ethnic groups in the UK, a substantially larger and/or boost sample is required.
A further strength of the study is both its use of measures of income poverty and of material deprivation. Income measures alone are not necessarily good measures of living standards, particularly at the bottom of the income distribution [21
]. In using measures of income, lack of socially perceived necessities and debt, this study encompasses a broader range of measures of living standards.
The findings reported here provide up-to-date data on the numbers and circumstances of a nationally representative sample of disabled children and their households in the UK. Using a definition of disability enshrined in the DDA, 952, 741 children (7.3%) in the UK in 2004-5 were reported to be disabled. The overall prevalence estimate of child disability reported in this study is higher than those reported from the FRS for earlier years and for the estimate for the same FRS survey year published by the Department for Work and Pensions. This is explained by use of different definitions of disability across surveys and across years within the same survey. The most recent DDA-related definition of disability was used to generate these analyses. Using this more inclusive measure increased the prevalence estimate by almost two percentage points and 250,000 children above the published estimates for 2003/4. This illustrates how changes to disability definitions and survey question sets within surveys can affect prevalence estimates.
Other recent UK surveys and data sources have produced estimates ranging from 4.5% to 16% [23
], thus the prevalence estimate generated by our study falls mid-range. Mooney et al
], using published figures and information from local authorities have suggested that in England the mean percentage of disabled children was lower, falling between 3% and 5.4%. This lower range estimate may be attributable, at least in part, to the definitions of disability employed and the populations of children included in the data sources, whose primary purpose may not be to capture the whole population of disabled children. Furthermore, prevalence estimates derived from sources relating to private households, as in this study, will not collect data on the small number of children living elsewhere, for example in residential establishments. As a result, they are likely to underestimate the prevalence of childhood disability. This suggests that data users need to understand and be clear about how the estimates they use are derived and population coverage.
The significant association between the age of the child and disability found in this study is consistent with other research [25
]. Lower prevalence among younger children is likely to be explained in part, by the fact that a range of conditions do not manifest themselves until later, and some become progressively more activity limiting as the child gets older. Failure by health, education and social care agencies to identify disability early in a child's life however, may also play a part in some cases.
Our findings indicate that disabled children and their households live in different personal circumstances, and substantially more disadvantaged material circumstances than their non-disabled children. Gordon et al's
(2000) reanalysis of the Office of Population, Censuses and Surveys (OPCS) disability survey also highlighted the poverty and poor living standards of disabled children in Britain in the 1980s [6
]. The analyses presented here suggest that little has changed. Disabled children in the UK today continue to experience income inequality and material and social disadvantage. While an association between poverty and childhood disability is well-established [26
], little is known about the precise nature of the relationship between childhood disability and social disadvantage or the extent to which factors such as low income precede or follow impairment. It was clear however, that the household incomes of disabled children and their families were, on average, lower than those of non-disabled children and that they experienced higher levels of debt and social deprivation. This is likely to be attributable to a number of factors. Households with disability children have a greater dependence on social security benefits and are faced with the additional financial costs associated with caring for a disabled child [27
]. It has been estimated that in the UK, families need incomes that are 10% - 18% higher than similar families with non-disabled children to have the same living standard [31
]. Higher levels of low income, debt and social deprivation are likely to be linked to the higher prevalence of lone-parenthood and parental disability in households with disabled children [32
This study highlighted that one third of disabled children lived in lone parent households, a similar proportion to that reported by Emerson and Hatton, 2007 [30
] but a considerably higher proportion than that identified by the OPCS disability survey, which reported that 19% of disabled children lived with a lone parent [6
]. The association between childhood disability and lone parenthood persisted when social disadvantage and other factors were controlled for.
An association between lone parenthood and childhood disability has been reported elsewhere in the UK [35
] and in other countries, including the United States [37
]. Reasons for this observed relationship between lone parenthood and disability are however, unclear and further research is needed. Higher divorce rates among parents of disabled children, lower rates of repartnering and a higher prevalence of births of disabled children to lone mothers are possible explanations. While studies, in general, have found higher divorce rates among parents of disabled children than non-disabled children, some studies suggest that this is not universally the case, with divorce rates among parents of children with Downs syndrome occurring proportionally less often than among other parents [39
]. While further research is need to explain the observed relationship between of lone parenthood and disability, given the further association of these with poverty and material deprivation, and evidence of high parental workloads linked with caring for some disabled children, the difficulties faced by these families need to be addressed through services and public policy.
Our findings indicate that disabled children in the UK are more likely than non-disabled children to live in rented accommodation. This confirms the findings from other research [30
]. Other studies indicated lack of space, and poor access inside and outside the home as commonly reported problems for families with disabled children [41
]. Together these data underline the need for national and local policies and services that seek to address the housing needs of disabled children and their households.
A significant finding of this paper is evidence of a clustering of child and adult disability. First, disabled children were more likely to live with disabled siblings and other disabled children than non-disabled children. One quarter of children with a DDA defined disability lived with one or more siblings who also had a DDA-defined disability. To date, information on the number of UK disabled children in any one family unit has been unclear. The OPCS survey did not collect data on the number of disabled children living in a family or household. Gordon et al
(2000) have suggested that estimates from other studies for the number of families caring for two or more disabled children range between 4% and 11%. A number of these studies however were based on data from families who had made successful applications to the Family Fund Trust. Such studies are unlikely to be representative of the wider population of disabled children because not all families of disabled children apply for assistance from the Trust and in addition, its eligibility criteria preclude access by middle and higher income families [6
]. Second, we found a relatively high prevalence of parental disability among parents of disabled children. The association between child and adult disability persisted when social disadvantage and other factors were controlled for. Although an association between child and adult disability in the same household has been described [42
], the research did not control for the impact of confounding factors, as we did. In addition, the proportion of disabled children living with disabled adults was found to be smaller than was evident in our study.
Given the hereditary nature of a small number of impairments and health conditions and the relationship between poverty, caring and disability for adults and children, evidence of disabled children living with disabled parents should not be surprising. Further research is required to establish whether parental disability precedes or follows the experience of parenting a disabled child.