Evidence from the first national survey of the housing needs of disabled children and their families.
Housing has always been centre stage in community care for adults but the housing needs of disabled children and their families have only recently been acknowledged. Housing matters presents evidence to support and inform change in policy and practice so that these needs are better met. The authors challenge traditional notions of housing need, calling for policy and practice to embrace all impairments, the specific needs of children and the environment outside the 'four walls' of the family home.
This study provides, for the first time, data at a national level on the housing needs of disabled children and their families, and their experiences of addressing these needs. The researchers - Bryony Beresford and Christine Oldman from the University of York - surveyed almost 3,000 parents of severely disabled children, and interviewed over 100 housing, social care and occupational therapy practitioners. They found:
Until the late 1990s little was known about the housing needs of disabled children, especially where those needs differed from the stereotypical issue of physical 'access'. Research published since then has drawn attention to the central role housing plays in the lives of disabled children and their families and, likewise, the inadequacies of current policy and practice in ensuring that families' housing needs are met. What has been lacking is the robust quantitative data needed to drive and inform change. This research provides such evidence.
Four out of ten families in the survey said their homes were cold, damp, and/or in poor repair. Poor housing conditions were reported more by families living in local authority housing compared with owner-occupiers and housing association tenants. Families with a disabled child are more likely to be living in poor housing conditions than families with similar incomes but non-disabled children. For example, 14 per cent of families in the current survey reported inadequate heating facilities compared with eight per cent of families participating in the 1999 Poverty and Social Exclusion (PSE) Survey.
Housing problem areas
In addition to poor housing conditions, there are a number of ways in which a home can be unsuitable for families with a disabled child. These 'problem areas' are located both inside and outside the family home. Table 1 shows the proportion of families reporting difficulties with each housing problem area.
Just under nine out of ten families were living in homes with at least one problem area, with one in four stating that there were six or more problem areas in their homes. Some of these problem areas may be experienced by any family with dependent children, but comparisons with equivalent general population datasets show they are experienced by a greater proportion of families with a disabled child.
This was the most frequently reported problem and was experienced by families regardless of the nature of the child's impairment. Families needed more space for: play, use and storage of equipment, and 'space' or time out from each other.
More than one in two families reported a lack of space. Lack of space can be a problem for any family, yet comparisons with data from the 1999 Poverty and Social Exclusion (PSE) Survey suggest that families with a disabled child are much more likely to have problems with a lack of space in their homes (33 per cent PSE families, more than 50 per cent families in the current survey).
While families on the lowest incomes reported more difficulties with their housing, middle-income families also experienced considerable housing problems.
Unlike families with non-disabled children, families with a disabled child are more likely to rent their home. Yet families renting from their local authority or a private landlord reported significantly more housing problems than owner-occupiers and those renting from housing associations.
White families were more likely to be living in a home which was suitable to their needs than non-white families. Differences exist in the types of problems likely to be experienced by different ethnic groups.
Difficulties with housing are reported by all types of families with disabled children: housing is not just an issue for children with physical impairments. For example, problems with the location of the home and difficulties with safety in the home were more likely to be reported where the child had behaviour and/or learning difficulties. In contrast, problems with access and equipment storage were most common among families with a child with physical impairments and/or a serious health problem. However, a lack of family space was likely to be experienced by any family.
This research focused on families with a severely disabled child: children who typically have more than one type of impairment. However, the findings from this survey can also inform our understanding of the housing needs of children with less severe or single impairments as, for the first time, this research was able to explore the associations between impairment and housing need. In addition, the known association between disability and poverty means that the issue of poor housing condition is likely to remain present among families with less severely disabled children.
Most families had already moved at least once in response to their child's needs or their needs as carers. The vast majority had made these moves without any professional advice or assistance.
At the time of completing the survey, half the respondents said they wanted to change their housing in some way so that it better suited their needs. Overall, moving home, as opposed to adapting the current home, was seen as the preferred option. Home-owners were the only group where adapting the current home was the preference.
Different problems with the home can require different solutions. A preference for moving was most strongly linked to living in a difficult location; needing larger toilet and bathrooms; and/or needing more space for using and storing equipment.
Interviews with relevant practitioners revealed that it is rare to find housing need being included in a needs assessment carried out under the auspices of the Children Act.
Three-quarters of families said they had not had their housing needs assessed by an occupational therapist. Among those who had been assessed, the outcome varied by tenure (see Table 2). Home-owners were most likely to have had changes made to their home. Almost a half of housing association tenants reported no change as a result of the assessment.
One in ten families had received financial assistance with the costs of adapting their home (typically a Disabled Facilities Grant) from their local authority. Of these families, a third had had to make their own contribution to the funding of the adaptation. Among those families who had been assessed as needing to make a contribution to the costs of an adaptation, one in three had been unable to meet these costs and the adaptation had not been carried out.
Interviews with practitioners and managers provided information about current practice in dealing with the housing needs of families with a disabled child. This revealed a number of examples of 'good practice'. However, this was not widespread and did not permeate the entire process of meeting housing needs - through identification, assessment, funding and delivery.
The effectiveness of current practice is undermined by a lack of clarity about the roles and responsibilities of the various (and potentially numerous) practitioners and departments involved in meeting the housing needs of a family with a disabled child. Typically, no single agency or department takes overall responsibility for ensuring the housing needs of disabled children living in their authority are met.
Finally, a significant barrier to improving service provision and delivery is the lack of data currently collected by local authorities that could be used to map housing needs and inform planning and budgeting. In addition, there is no routine evaluation of the outcomes of adaptations or rehousing.
The project comprised of a survey of parents of one or more severely disabled children who were identified through the Family Fund Trust database. The sample is representative of the great majority of parents caring for a severely disabled child in England. Parents completed a postal questionnaire and a response rate of just over 60 per cent was achieved, yielding a sample size of 2,941 families. In order to compare the housing needs of families with a disabled child with those with non-disabled children, secondary analyses on datasets of families with dependent children and with similar income profiles were carried out. The datasets used for the comparative analyses were the 1999 Poverty and Social Exclusion Survey and the 1998/1999 Survey of English Housing. In addition, interviews were conducted with senior housing, social service and occupational practitioners working in over thirty different housing authorities and related social service departments.