Improving housing services for disabled children and their families

Bryony Beresford and Christine Oldman

In 1998, Homes unfit for children described the extent of unsuitable housing for disabled children and their families and the impact it had on their lives.

This follow-up study examines the policy and practice implications of the earlier report. It is based on consultation with professionals working with disabled children and their families, and discussion with parents who had participated in the original study. The report:

  • Provides a useful overview of policy and legislation;
  • Discusses both families' and professionals' views of the problem of unsuitable housing;
  • Looks at problems in the current system of service provision, specifically the lack of an holistic, coherent approach;
  • Highlights the practical barriers to more effective services and suggests solutions, giving good practice evidence and recommendations.

Part of the Community Care into Practice series, Improving housing services for disabled children and their families is not simply a research report, but is also an information source and a resource to identify and support change. For housing needs to be met, the authors conclude that joint working is essential with greater understanding between different professionals within and between agencies.

Summary

Summary

Earlier research supported by the Joseph Rowntree Foundation identified difficulties and inadequacies in meeting the housing needs of disabled children and their families. That research also revealed the considerable impact unsuitable housing can have on the lives of disabled children, their siblings and their parents. In order to identify ways of moving on in terms of policy and practice, key practitioners from housing, social services and health authorities were invited to a series of 'roadshows' held around the UK. The findings from this project, conducted by Christine Oldman and Bryony Beresford (University of York), were:

  • Roadshow participants agreed that 'something needs to be done' about housing for families with disabled children. 
  • Barriers to meeting the housing needs of disabled children and their families are wide-ranging. Issues of national and local policy - in terms of both housing and social service provision, as well as practice - are implicated.
  • While resources were identified as a key barrier to ensuring families lived in suitable housing, it was felt that lack of finances is not the only reason why so many families' housing does not meet their needs.
  • Other barriers identified by roadshow participants fell into one of the following broad categories: housing stock and conditions; a general lack of awareness of the problems faced by families with disabled children, approaches to disability and childhood; legislative and policy frameworks; service delivery; and ineffective joint working.
  • Participants shared some examples of good practice and innovative work and came up with other possible solutions during the course of the roadshows. However, there was consensus that changes in policy and the issuing of joint guidance from the Departments of Health and the Environment, Transport and the Regions were needed to promote and support change nationally. 

Introduction

There is a growing awareness that current systems for meeting the housing needs of disabled children and their families are woefully inadequate. At least half of families with a disabled child are living in housing which is unsuitable to their needs.

Addressing housing needs is complex. A large number of different professional groups, working in different agencies, are involved. The purpose of this project was to work with practitioners from housing, social services and health authorities to identify current problems in improving the housing situation for families. It also aimed to generate possible solutions - drawn either from experiences of good practice or from creative thinking and discussions with colleagues from different professional groups or agencies. 

Lack of suitable housing

Problems
The inadequate supply of appropriate housing is a significant problem. Participants saw the shortage of suitable housing in the social rented sector as the result of under-investment at a national level in the supply and quality of housing.

But there was also concern that all those involved in housing design, construction and provision should be fully aware of disability issues - including the housing needs of disabled children and young people, and needs related to learning and behavioural difficulties. This would necessarily require involvement and consultation with disabled children and adults.

Possible solutions
The limited supply of suitable social housing could be used more effectively:

  • Housing allocation criteria could give greater priority to families with a disabled child and take a more flexible approach that recognises such families' needs, for example not expecting a disabled child to share a bedroom with a sibling. 
  • To free up adapted properties, the rules governing tenancy succession could be waived in favour of disabled children. Normally family members can inherit council tenancy. Where accommodation has been adapted and could be suitable for a family with a disabled child, the inheritor could be offered an alternative property so that the adapted home could continue to be useful to a family with a disabled member.

Matching need with supply

Problems
Both tenants and owner-occupiers face problems finding suitable housing to match their needs. The current lack of information in many localities about both the availability of adapted properties and the numbers of families requiring them means that resources are wasted, with existing adaptations not being used. 

Within housing agencies, performance indicators also work against matching need to supply. The pressure to keep empty properties to a minimum means that adapted properties are not necessarily allocated to the most appropriate family. 

Possible solutions
'Disability registers' are a mechanism for improving the fit between demand and supply. They consist of a database of accessible property, a register of people who require such housing and a service which matches people to property. At the moment they operate almost exclusively in the social rented sector. With co-operation from estate agencies, a similar system could be set up in the private housing market, both at a local and national level. 

Performance indicators on the length of time taken to let properties could allow for sensitivity to the needs of families with a disabled child; in these cases, more time may be needed to ensure the letting is appropriate. 

Inadequate funding for housing adaptations

Problems
Housing adaptation services are dominated by a lack of resources. As one Occupational Therapist said "We work to minimum survival standards rather than give a life enhancing service." While there is a general belief that resources for meeting the housing needs of disabled children are inadequate, the scale of this has not yet been quantified. However, some practitioners felt that the public expenditure implications of meeting the housing needs of disabled children are not necessarily huge. The phrase 'empire-building' was used a number of times to account for why there is disappointing progress on joint funding or pooled budgets to fund housing adaptations.

Possible solutions
Ring-fenced money for housing adaptations for disabled children is a possible solution, though this would have to be based on a sound idea of need. 

Some participants argued that health resources should be made available and that social services need to assume greater responsibility for meeting housing needs. National and local reviews of different health and social care budgets should be undertaken to increase knowledge of all the possible ways of meeting housing need. In addition, multi-agency meetings of all budget holders exchanging and harmonising policies and procedures would result in a better appreciation of different agencies' roles and responsibilities.

The limitations of the Disabled Facilities Grant (DFG)

Problems
The DFG came in for a great deal of criticism (see Box 1). Some requirements for DFG funding are mandatory, whilst others are down to the discretion of the local authority. Participants at the roadshows believed that items such as play space or access are essential to a child's development and should fall within the 'mandatory' criteria. 
Authorities differ considerably in the way they interpret and administer the DFG. A key problem is that the legislation is permissive rather than highly prescriptive. 

Possible solutions

  • Opinions differed as to the best solutions in terms of the means test and 'ceiling' (see Box 1) but there was agreement that these aspects of the system needed thorough re-examination. 
  • Another option would be to offer low interest loans for families' contributions to the cost of an adaptation.
  • It was thought that regional inconsistencies can only be addressed through Government action in the form of tighter legislation and accompanying guidance - ideally jointly issued by the Department of Health and the Department of the Environment, Transport and the Regions. 
  • Costly bureaucracy in the DFG process needs to be reduced so fewer people from different agencies are involved.

Box 1: Inadequacies of the Disabled Facilities Grant

Lack of a child focus
Funding guidance does not explicitly address the specific and changing needs associated with childhood and adolescence.

The Test of Resources
The Test of Resources results in many families being assessed as having to contribute considerable sums to fund the adaptation. Lending institutions are often unwilling to give additional mortgages.

The DFG ‘ceiling’
In England a ‘ceiling’ of £20,000 operates (£24,000 in Wales). Although the DFG guidance does encourage ways of funding the excess, in practice securing the money can be very difficult. In those parts of the country where building costs are high, the DFG limit proves a considerable barrier.

Moving to a new home

Problems
Although it may be more convenient or cheaper for families to move house in order to get the extra space or make the adaptations they require, there is no public finance available to fund this course of action. 

Possible solutions
A few authorities have sought to find ways of working round this, which could be introduced nationally. These include shared ownership initiatives and interest-free loans to families to enable them to buy more suitable properties. 

Problems with joint working
Problems
All the meetings highlighted the difficulties of working with others from different occupational groups or different agencies. These problems were both cultural and organisational. Roadshow participants' comments on joint working were very familiar and apply to many other areas where housing and community care services overlap. Participants cited a lack of commitment to and ownership of joint initiatives due to agencies' different agendas, time scales and performance indicator frameworks. They also discussed problems with professional differences, defensiveness and lack of awareness of each other's roles and responsibilities. 

Possible solutions
Participants felt that local solutions to this problem need to be driven by joint working between government departments, and that national legislation needs to be in place to promote and support joint working. 
At a local level, multi-agency problem-solving and training is a potential solution. 

Identifying housing needs

Problems
Housing tends to be treated as a 'poor relation' by the three agencies typically thought of as being responsible for children's health and welfare - health, social services and education. Non-housing professionals' lack of awareness of the importance of suitable housing hinders the identification of housing needs.

Possible solutions
A multi-disciplinary approach to training which takes account of all of a family's likely needs is needed, with clear input on housing issues. Assessments under the Children Act need to both identify and act upon housing needs clearly and rigorously. At a strategic level, housing departments need to be represented on inter-agency strategic and operational groups (for example, Joint Consultative Committees, Joint Planning Teams, Primary Care Groups).

Assessment

Problems
Current assessment procedures stress a child's functional ability and dependency. This leads to an assessment which focuses on physical disability. 

Possible solutions
Applying the 'social model' of disability would focus the assessment of housing need on the way features of the home prevent the child maximising independence in all aspects of his or her life. This would result in a more holistic, child-centred assessment. Emphasising need rather than impairment is much more likely to lead to a more cost-effective use of resources and to adaptations actually being used. It would also result in identifying whether families would prefer to move or stay put.

Delivery

Problems
Numerous professionals from a number of different agencies or organisations can be involved in assessing for and delivering a housing adaptation. 
It is hard for families to understand what a two-dimensional line drawing of a proposed adaptation will look like in real life. Uninformed decision-making can lead to families not using an adaptation or to a less effective or useful adaptation being carried out, or the wrong decision being made about the most suitable house to buy. 

Possible solutions 

  • Some areas now have multi-agency teams responsible for assessing and meeting housing need. Advances in information technology now allow improved communication between such teams.
  • The delivery process may be eased by the involvement of a specialised agency which can act as a 'one-stop shop' throughout. For example, home improvement agencies (HIAs) have a good track record of easing the adaptations process for older people, though they rarely work with families with a disabled child. Families might also benefit from keyworkers to support and steer them through the process of moving or adapting their home.
  • The practice of visiting homes where similar adaptations have been installed should be encouraged. In addition, the potential for using computer software to provide families with three-dimensional pictures of what the proposed adaptation will be like ('virtual adapting') in their home should be explored. 

Building on existing evidence
There is a lack of evidence-based practice. Follow-up with families following an adaptation is not routine. As a consequence, we know very little about what does and does not work for families, and thus future practice is not informed. Resources should be available to allow follow-up and review of adaptations. This information should be collated and shared locally and nationally.

About the study

One hundred and thirteen delegates, representing 54 departments or authorities in England and Wales, attended the roadshows. A wide range of professional roles was represented including front-line practitioners and team managers as well as more senior managers. The basic structure of each roadshow was: dissemination of research findings; identification of barriers to better meeting the housing needs of disabled children and their families; identification of solutions to the barriers and sharing of good practice and innovative solutions. Participants worked in single professional role/agency groups and multi-agency/multi-role groups during the day. The roadshows were held in late Spring 1999.

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