An examination of what disabled children and their families value about the housing services they receive and what gaps remain.
Good housing plays a key role in the well-being of disabled children and their families. Equally, unsuitable housing can exacerbate the difficulties these families face. This report highlights housing services that have been commended by families with disabled children.
Specifically, it draws together examples of individuals and agencies which are addressing their needs in a positive and beneficial way. The services include those focused specifically on providing for disabled children or generic services which disabled children or any other disabled people can use. The report looks at:
Good housing plays a key role in the well-being of disabled children and their families. Research at the University of York has highlighted services that address the housing needs of disabled children and their families in a positive way, and that have been commended by families themselves. From talking to practitioners and families, the research has drawn out a number of underlying principles and themes that are important in meeting the housing needs of this group:
Unsuitable housing can be disabling and exacerbates the difficulties faced by children with an impairment or functional limitation and their families. Problems with housing relate not only to the accessibility of the home, inside and outside: issues of space, house condition and unsuitable location can be equally or more important.
Practitioners are in a very difficult position of having to balance providing for individual needs whilst providing an equitable service to all, within a context of severely constrained resources. Other research has suggested that a fundamental weakness in trying to address the housing needs of disabled children is the lack of a sufficient focus within the legislation affecting this group: there is no one single legislative framework for responding to the housing needs of such families.
Nevertheless, in spite of the difficult context in which they operate, this research has highlighted the way that a number of individuals and agencies are making a real and positive difference in addressing these families' housing needs. By highlighting those services that families themselves have rated as 'good', the study has also been able to draw together some of the key issues that could underpin practice development in this area.
Many of the families who took part in the research highlighted the value of advice and information services. A major barrier for families is being able to find out information about the kinds of help that may be available from organisations to meet their housing needs, and also who they should approach. Families seemed to particularly value being able to access this sort of service at the time when they first found out about their child's impairment or health needs.
Some organisations had spent considerable time on raising awareness of the housing needs of disabled children. This focus on awareness-raising was targeted on a variety of different audiences. For example, some agencies were working to raise the profile of disabled children from black and minority ethnic communities. In another instance, a housing association had worked with a local authority to ensure that the specific needs of disabled children were not obscured by the housing circumstances of the parents or carers.
The empowerment of families was a core principle for a number of agencies. These services emphasised the importance of ensuring that families are at the centre of decision-making about their housing circumstances whilst not being left to 'fend for themselves'. The roles of keyworkers, 'one-stop shops' and independent advocacy were particularly significant as valued means of support, as was simple access to a named individual who would be on hand to listen.
Families also appeared to value being presented with a full range of housing options, from which they were able to exercise a real degree of choice. Some services were specifically committed to broadening the housing choices available to families, for example, by helping to facilitate access into owner-occupation.
Focusing the service around the needs of the individual family rather than fitting the family into the format of the service was also commended by families. In one local area, a keyworker acted as a single point of contact for a family, and would then coordinate all other services in connection with that family. In another area a multi-agency team brought together expertise across a range of different services. Others were actively involved in developing a common and shared understanding of each agency's responsibilities towards disabled children.
Indeed, the extent to which the specific needs of children were recognised by services was another prominent feature amongst those services that were nominated. For example, in spite of the resource implications, a number of authorities used discretionary funding to accommodate the crucial developmental need of 'space to play'.
Finally, the importance attached by families to quality relationships based on trust, honesty, openness and dignity should not be overlooked. Parents placed a great deal of value on having somewhere to go where they could be assured that they would always be listened to, and service staff who would always make themselves available to discuss the families' needs. One parent commented on the help provided by her housing officer:
"He was always so helpful. Whatever time of day, whatever it was, he would always find the time to talk to everybody. You knew there was always someone at the end of the phone who would always be helpful."
Although the focus of this study was to highlight what can be achieved, other evidence suggests that the services put forward here are more likely to be the exception than the rule. The research therefore identified some of the underlying features of those services commended by families themselves, in order to identify key questions that could help all agencies working to improve the housing circumstances of disabled children and their families.
The summary of this analysis is presented in Table 1.
The project links to other research that has recently been completed by the Social Policy Research Unit (SPRU) at the University of York in partnership with Barnardos and the Family Fund Trust. The Sharing Value project used National Lotteries Charities Board funding to develop a website and print directory of user-commended support services for disabled children and their families, based on a survey of 16,000 families (disabled children, their parents and siblings).
By including questions that specifically related to housing, the survey was able to identify user-/carer-commended services that could be investigated for this particular project. These leads were supplemented by contact with some of the key national agencies and by a survey of community-based occupational therapists. Where the recommendation had not come from families directly, users of the service were interviewed.