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6 Services for disabled children and their families
Background policy and statistical evidence
6.1 The disability equality schemes, action plans and annual reports of the 32 Scottish local authorities, relevant sections of the Scottish Government's disability equality scheme, and guidance and research documents were examined to produce this chapter of our report. This chapter deals primarily with social services support for families of disabled children; for arrangements for the education of disabled children, see Chapter 3 (Schools).
Wider policy context
6.2 The need for tighter inter-agency working underlies recent policy on services for disabled children in Scotland. For example, the policy document For Scotland's Children (Scottish Executive, 2001) set out the agenda for change and the practical adjustments which were required, such as the sharing of electronic records by health, education, social work and the voluntary sector. This agenda was further developed in the Getting It Right for Every Child initiative, which incorporated a commitment to the development of an Integrated Assessment Framework and a single support plan for disabled children and others with significant additional support needs. Working together was also a central theme of the report of the Children's Sub-Group of the Scottish Executive's learning disabilities strategy (Scottish Executive, 2006c). The report, entitled Changing Childhoods?, advocated the extension of the Local Area Co-ordinators scheme, also involving key workers.
6.3 New education legislation is based on the principle of joined-up working. The Education (Additional Support for Learning) (Scotland) Act 2004 placed a duty on local authorities to identify and meet children's additional support needs. Children with enduring difficulties arising from one or more complex factors or multiple factors and requiring significant additional support from education and other agencies qualify for a Co-ordinated Support Plan ( CSP). This plan specifies the services to be provided by a range of agencies and has statutory status. Health and social work have a duty to assist education in making provision to meet additional support needs. Early evidence suggests that relatively few children are deemed to meet the tightly specified criteria for a CSP, but the need for services to be co-ordinated is recognised for all children with additional support needs.
6.4 Key working or care co-ordination has been developed to help disabled children and young people and their families benefit from inter-agency working. However, it is evident form the brief review of policy and legislation above that, whilst the principle of co-ordinated service delivery is endorsed by all agencies, there is a danger of duplication of effort and confusion over terminology. For example, the same family might be eligible for a learning disabilities team key worker and a CSP co-ordinator, who might well be located in different agencies and might not communicate very effectively with each other. Care Co-ordination Network UK ( CCNUK) is a voluntary organisation set up to promote care co-ordination and key working to avoid the dangers of service duplication. Over the last five years, it has developed partnerships with local authorities and health boards to assist them in providing co-ordinated services to families with a disabled child. Service standards on care co-ordination ( CCNUK, 2008) have been developed by CCNUK and recognised by the Scottish Government.
Research and statistical evidence
6.5 Research conducted by Purves et al. (2008) examined the extent to which key working schemes were operating or under development in Scotland and how they were working in practice. The study up-dated earlier work on approaches to care co-ordination across the UK (Greco et al., 2004; 2005), which showed that in 2003 care co-ordination was somewhat better developed in England compared with Scotland. The more recent Scottish research (Purves et al., 2008) demonstrated the extent to which progress has been made in Scotland, with more than half of Scottish local authorities, working ion conjunction with health boards, providing key worker support to families of disabled children. In the following sections, some key findings from this research and implications for future development are highlighted.
Figure 14: Which agencies were involved in setting up the scheme?
Source: Purves et al. (2008)
6.6 As seen in figure 14, NHS Trust, Social Work Services, and Education were the main agencies involved in setting up the schemes. Five respondents reported that all of the six agencies mentioned ( NHS, Community Health, Social Work, Children's Services, Education and Voluntary) were involved in setting up and overseeing the schemes. The respondent who stated 'Other' reported that parents were also involved in setting up and overseeing the scheme.
6.7 Eleven respondents reported that there was a lead agency within their scheme. Lead agencies identified were as follows: Social Work (n = 4); Health (n = 4); Children's Services (n = 2); Education (n = 1). Two respondents stated that they did not have a lead agency within their scheme. Figure 4.18 shows that six schemes were funded by Social Work Services, and in two of these cases additional funding was provided by the NHS Trust and Education. Two schemes received money or resources from the NHS Trust and Education. In one case, the only source of funding was the NHS Trust, and another scheme only received funding from Children's Services. Three of the thirteen respondents did not specify which agencies contributed money or resources to the scheme, suggesting that they may have been unsure. It is worth underlining that, despite the principle of joined-up working, only two schemes appear to have received support from all three central agencies (health, education and social work).
Figure 15: Which agencies contributed money or resources (staff) to the scheme during the financial year 2006-2007?
Source: Purves et al. (2008)
6.8 The Changing Children's Services Fund was a short-term Scottish Government initiative aimed at providing pump-priming money to start up new types of service provision for a limited period. The understanding was that when this funding stream came to an end, local authorities would have to decide whether to fund these services through their core budget (referred to as mainstream funding). Five respondents specified that they had used funds from the Changing Children's Services fund for support; one respondent had used Changing Children's Services Fund and Sure Start; two respondents had used mainstream funding; and four respondents reported using funds from both the Changing Children's Services Fund and the mainstream budget.
Families using care co-ordination: eligibility and referral
6.9 Purves et al. (2008) also found that the number of families being supported by the schemes varied greatly according to the size of the local authority. The smallest scheme, in a rural area, supported twelve families whereas schemes in urban areas typically dealt with more than 150 families. Five of the schemes only covered the 0-5 age range. Two schemes covered 0-15 years and six covered the complete age range from 0-16+ years. Most respondents stated that all children with a diagnosed complex disability that required the involvement of two or more services were eligible for the scheme.
6.10 Twelve schemes used an open referral system. As Figure 16 shows, many respondents stated that they took referrals from a range of agencies as well as other sources. On average, respondents took referrals from six agencies although one respondent reported that they only took referrals from the NHS Trust. The respondent who stated 'other' reported that anyone can refer a child for assessment.
Figure 16: Who refers families to the scheme?
Source: Purves et al. (2008)
Funding issues
6.11 It is evident from the findings of Purves et al. (2008) that, despite their popularity with parents, the financial future of care co-ordination services is unsure. Many were initially funded through special initiatives such as the Changing Children's Services Fund. The advantage of such programmes is that their ring-fenced funding allows specialist services to be developed. The downside, however, is that funding is guaranteed for a limited period only, and subsequently services have to compete with others for funding from the core budget. If mainstreaming is achieved, it may be the case that a less lavish service is provided, leading to fears that the initial gains may be lost or diminished.
On-going challenges of inter-agency working
6.12 Despite the endorsement of the principles of key working by all parties, it was clear from the various accounts presented above that joined-up working was more easily achieved in theory than practice. Ownership of care co-ordination schemes tended to rest with the agency which had initiated the scheme in the first place. It was quite rare for education, social work and health to be equally involved in the delivery and funding of care co-ordination services. With regard to their disciplinary background, key workers were more likely to be social workers or health professionals, and less likely to come from education. It was reported that some professional difficulties emerged when schemes were being set up initially, sometimes disappearing once the scheme was up and running, but occasionally persisting. The specific discourses employed by health, social work and education continued to contribute to lack of understanding of different professional practices. Problems in successfully implementing multi-agency working are amply illustrated in the research literature (see, for example, Lightfoot et al., 2001). It is evident that a significant amount of energy is needed to overcome these challenges, so that skirmishes over professional boundaries are not allowed to damage the quality of service delivered to disabled children and their families.
Accessing key worker service
6.13 Purves et al. (2008) found that, in different geographical areas, a range of practices were used in terms of determining access to key working services. In rural and semi-rural areas, where pressure on services was less intense, all parents whose children required multi-professional input were offered a key worker, and most accepted. In urban areas with considerable pressure on services, demand for key workers often out-stripped supply, and as a result more stringent qualification were applied. In some areas, the child's age determined access to care co-ordination services. Sometimes, key workers were only allocated to pre-school children or those under the age of three. These services were typically run by social work or health, and deemed to be no longer necessary once education became the main service provider.
Proliferation of co-ordinated planning mechanisms
6.14 Purves et al. (2008) demonstrate that, as the need for joined-up services has gained recognition, so the mechanisms for achieving inter-agency working have increased. Care co-ordination services, often led by social work or health, have spread, and at the same time Co-ordinated Support Plans, with education as the lead agency, have been established. Although the Scottish Government wishes to have an integrated assessment framework in place by 2009, associated with a single support plan, it is evident that the care co-ordination services run by different agencies are often operating separately. In some areas, it appeared that a child's key worker might have little involvement with, or indeed knowledge of, the person with responsibility for the child's Co-ordinated Support Plan. In addition, a child or young person with learning disabilities might have a key worker linked into the area learning disabilities team, whose responsibility for the young person would continue after they moved into adult services. Clearly, the task of harmonising co-ordinated services planning mechanisms has yet to be undertaken and, as one interviewee mentioned, much work will be needed to achieve a single assessment framework and support plan, compiled and used by all agencies working with the child.
Providing family and child-centred services
6.16 The need for services focused on meeting the needs of families and children was recognised by all interviewees. Purves et al. (2008) report that, at the same time, placing parents' concerns at the heart of all planning and review meetings was clearly difficult to achieve, since each professional was likely to have their own concerns and preoccupations which might often predominate. Furthermore, allowing children to communicate their experiences of services was recognised as a major challenge. Some professionals felt that children might be too young to articulate their views, or might be hindered by communication difficulties. However, it was evident that the various imaginative ways of providing severely disabled children with communication opportunities, perhaps using ICT or low tech communication aids, had not been fully explored. This clearly is an area for future development.
Understanding of the key worker's role
6.17 It is evident that a number of different models of key working are used in Scotland, for example, sometimes key workers are employed to carry out this role as the main or only focus of their work, whereas in other cases key working may be part of a much wider job remit. Whichever model is employed, it is of vital importance that practitioners and service users are aware of what makes key working different from other forms of service delivery, as spelt out in the Care Co-ordination Network UK key worker standards ( CCNUK, 2008) . It is telling that Purves et al. (2008) found that some interviewees expressed the view that key working was not that different from the normal working practices of health or social work professionals. Such attitudes suggest a lack of awareness of the distinctiveness and challenges of care co-ordination. Indeed, earlier work conducted by the Social Policy Research Unit at the University of York (Greco et al., 2004; 2005), found that the belief that key working was no different from normal practice tended to indicate a lack of understanding of and adherence to the central aspects of the key worker's role.
The training and development of key workers
6.18 Recognising the distinctiveness of the key worker's role is linked to the importance attached to initial and ongoing training. It is evident that, whilst most new key workers are provided with initial training, on-going training is far less widely available, and is often contingent on the presence of a manager with time dedicated to this task. There is clearly a cost attached to delivering training to new key workers, as well as those who have been undertaking this work for some time. However, as demonstrated by earlier work (Greco et al., 2004; 2005), failure to invest in initial and ongoing training is likely to result in an under-developed service with insufficient awareness of best practice.
6.19 To summarise, it is evident that the principles of care co-ordination have received widespread acceptance over a relatively short period of time, and yet much further change will be needed to ensure that new ways of working become embedded. Safeguarding and building on the gains will be extremely important over the coming years, particularly in times of greater financial stringency when funding for innovative projects may be less readily available.
Reporting on progress
6.20 In the sections which follow, we shall present first the areas in which progress towards equality is evident from the disability equality schemes, action plans and annual reports, followed by discussion of the areas in which progress is not evident. The report will end with
- discussion of the use of categories of impairment in the schemes;
- the evidence of the involvement of and consultation with, disabled people and their families; and
- a summary and conclusions.
Reporting on progress: areas where progress is evident
6.21 The Scottish Government's own disability equality action plan includes many actions relevant to improving the position of disabled children and their families. In addition to the steps outlined in the Schools Directorate action plan to improve education and support for children with additional support needs, the Children, Young People and Social Care Directorate action plan describes moves to increase numbers of grants to families with disabled children, to give greater parental empowerment and control over services to disabled children and continued support for families affected by disability; improving the capacity of the social care sector to support vulnerable groups, including those affected by disability; developing approaches to working with children and their families that prevent, manage and deal with risks; and ensuring that the rights of all children, including those affected by disability, are respected.
6.22 Actions by the Lifelong Learning Directorate to improve guidance on the Disability Students' Allowance, Partnership Matters, the funding practices and provision of further education opportunities available to people with complex needs and of information, advice and guidance on funding for learners may also be relevant to disabled children and their families. The Scottish Government scheme also lists programmes where disability equality is being mainstreamed which may improve the opportunities for disabled young people - Workforce Plus, More Choices, More Chances, Get Ready for Work, Determined to Succeed, and the Education Maintenance Allowance.
Improving communication with children and their families
6.23 The evidence from the disability equality schemes and annual reports points to progress in a number of the areas relevant to Children's Services. Like other groups, families with disabled children may benefit from reported improvements in general areas, such as improved access to public buildings and provision of aids and adaptations to houses. Another important area is accessible communication about services: the provision of information in Braille, audio and large print; translation and interpretation services including sign language, lip speakers, Braille; and ensuring that council websites and intranet facilities comply with best practice for accessibility and usability. Some councils note the need not only to expand their provisions of loops at public locations, but also to check that they are operating effectively and that all staff are trained adequately to operate them.
Staff development and awareness-raising
6.24 Staff training, not only in operating appropriate equipment, but also raising the awareness of all staff of disability and other equalities, is an important element in many plans. Some councils approach this by offering awareness-raising training to all new and existing staff, and more detailed training tailored to those with specialist roles. Training of staff in impact assessment also figures in many of the first round of action plans. Some have also prioritised the training of councillors. Only a few, however, note the need to monitor and review the effectiveness of this training.
Developing collaborative systems for future action and consultation
6.25 Progress on issues specific to disabled children and their families (as opposed to their education) is not easy to assess from the disability equality schemes and annual reports. In some cases, the Council annual report describes efforts which, in the first year of the scheme, have been put into developing appropriate systems for the future. An example of this is the progress reported by Inverclyde Council in setting up a Community Engagement Network to review consultation and engagement arrangements, establishing a Community Health Partnership, and creating an integrated Children and Disability Team intended to increase their ability to respond more effectively to the needs of children and families affected by disabilities.
6.26 In other cases, the out-of-school needs of disabled children and their families are included in the education action plan and annual report: for example, Stirling Council Children's Services has developed a scheme that "goes beyond Children's Services education functions and seeks to address disability equality in all services for children and young people". It therefore includes action points about opportunities for disabled children and young people to access to care, play, sports and social activities both in school and with council partners, and about pre-school and out-of-school provision. Most of the education authorities' action plans and annual reports, however, are concerned primarily with schools and schooling, rather than the wider system of support from health and social services.
6.27 As noted in the chapter 3 (Schools), in some areas the education disability equality scheme and action plan are integrated into the local authority scheme and plan - featuring as an appendix or separate section within the main council document. Yet even if all services are described within one document, social work initiatives such as fora for service users with physical disabilities, learning disabilities or mental health problems, carers and parents of disabled children and the provision of person-centred services for young people in transition are generally listed quite separately from the arrangements in schools for support, consultation and involvement of disabled children and their parents. Perhaps as more progress is made on collaborative working it may be possible to draw together information on the progress towards equality of some of these user groups. It could be argued that real progress towards equality of opportunity for disabled people will depend on the co-ordinated actions of several teams of service providers within their local area, including education, health, social work, housing, and leisure services.
6.28 To sum up, schemes and action plans contain ample evidence of activity intended to improve the situation of disabled children and their families, by improving communication and information, developing stronger links with other professionals working with those families and staff training to raise awareness of disability issues. Measuring progress is complicated by the separation, in reporting, of the activities of education and social work professionals, the former being reported in the education authorities' annual reports, the latter in the general council schemes.
Reporting on progress: areas where progress is less evident
6.29 Most of the local authority schemes do not present enough detail about services to disabled children and their families to allow a full assessment of progress towards equality of opportunity. This is not necessarily a criticism: the disability equality scheme is a summary document covering all aspects of council services, and cannot convey the full impact of, for example, services for disabled children and their families, as opposed to their school education. This does not mean, of course, that no progress is being made, but simply that disability equality schemes and annual reports are not always suitable sources for detailed evidence of progress.
6.30 Impact assessment of policies by councils is progressing unevenly. Some local authorities report training their assessors and identifying priority policy areas for impact assessment in their first year, while others report that they have designed and distributed impact assessment tools, or present prioritised lists of policies for impact assessment. Others again, such as South Ayrshire, provide not only a guidance leaflet for their staff undertaking impact assessment, but also a list of those policies which had already been impact assessed before they produced their first annual report.
6.31 To sum up, the breadth of some of the aims expressed in the council action plans and the relative lack of clear targets, as well as the separation of the education and social work plans makes it harder to see how much progress is being made in improving the opportunities for disabled children and their families. It also seems likely that delays in some authorities in undertaking impact assessment of policies will not have helped.
Categories of impairment employed
6.32 As noted in previous sections, most council disability equality schemes do not provide statistics of their service users and the categories of their disabilities. A few supply statistics of children in schools, who may or may not be recipients of services in the community. Perth and Kinross Council, for example, provided data on pupils with additional support needs in primary and secondary schools, using both the old categories and the new.
Consultation and involvement
6.33 Almost all the disability equality schemes mention links with voluntary groups who work with disabled people in their area and seek to involve them, alongside disabled clients and employees in their consultation processes, and most plans include seeking the views both of disabled children and their families. Yet as noted elsewhere in this report, many schemes and annual reports contain scant details of the processes of consultation or of the nature of the changes that were made as a result and how these changes helped progress towards equality of opportunity for disabled people. Some councils, however, do provide a little more detail: for example, one notes that "children and young people's views are routinely collected as part of staged intervention, childcare review and co-ordinated support plan meetings to inform and influence decisions that affect them, leading to personalised learning and care plans", and describes consultation with parents over the opening of new premises, and awareness-raising sessions at Parent Forums to encourage participation of children and young people, parents and carers in public life.
Summary and conclusions
6.34 Disabled children and their families seem likely to benefit from the focus on reviewing services and policies and increased consultation with and involvement of service users which the disability equality duty demands. While the disability equality schemes and annual reports reviewed here contain evidence of efforts to improve the provision and co-ordination of services, these documents alone cannot capture the difference, if any, that council services are making to the lives of disabled children and their families. To understand that would require a more detailed investigation of the users' perspectives on the impact of the disability equality legislation.
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