Developing an Outcomes Model for Disabled Children in Scotland

4 GIRFEC: The Context for Developing Outcomes

4.1 "Getting it Right for Every Child (GIRFEC) is the golden thread that knits together our policy objectives for children and young people... GIRFEC aims to put children at the centre of practice, improve outcomes for them and ensure that all agencies respond appropriately to individual children and any needs/ risks they may face. It requires systems, services, planners and practitioners to work in an integrated and consistent manner, using a single planning and delivery system, cutting out duplication and as much red tape as possible." (Scottish Government quoted in Stalker and Moscardini 2012)

4.2 GIRFEC also aims to help realise the National Outcome (highlighted in Scotland's Curriculum for Excellence), that children⁵ should become successful learners, confident individuals, effective contributors and responsible citizens.

4.3 Whilst GIRFEC, as the framework for all work with children, has been well documented and is widely known, it is revisited briefly here for a number of reasons. Although it is national policy, it is not currently implemented fully across the country. It involves major culture change which takes time to embed across all services. Progress is being made but remains patchy and requires further work. This section therefore attempts to cover some ground which should be familiar, in order to note specific ways in which GIRFEC can be used in implementing outcomes with disabled children.

4.4 The National Review of Services to Disabled Children (Scottish Government, 2011) places policy and practice relating to disabled children in the context of the GIRFEC framework. It argues that: "The GIRFEC principles must be applied to the many complex problems besetting services for disabled children". It also identifies a need for "a 'more systematic plan of action' to enable the necessary changes to systems, practices and cultures (page 6) if the SHANARRI⁶ well-being indicators are to be delivered for disabled children."

4.5 This project is framed in the context of GIRFEC and the SHANARRI Wellbeing indicators. Ultimately, the concern here is with how GIRFEC:

• Works in practice
• Connects at all the levels of outcomes identified
• Provides a framework for outcomes in relation to individual disabled children.

The implementation of GIRFEC

4.6 GIRFEC appears to be widely accepted and acknowledged as the framework for work with all children, including those who are disabled. Most people who are developing outcomes models seem to be using GIRFEC directly or at least taking it into account.

4.7 However, there does not appear to be a consistent pattern across Scotland in terms of how the GIRFEC approach and framework are being used with disabled children.

4.8 There were a number of references to GIRFEC in this study's literature review. Stalker and Moscardini (2012) highlight the following issues:

4.9 "GIRFEC is intended to apply to all children. However, inclusive policies that do not highlight the particular needs of disabled children may inadvertently exclude them. These children often need additional support to benefit from mainstream services and there is concern that some children, particularly those with complex needs, may fall through the net".

4.10 "Disabled children have been relatively invisible within GIRFEC. What does 'healthy' mean for a life-limiting medical condition? What does 'achieving' mean for a child with complex multiple impairments'?" Stalker and Moscardini conclude that there is a long way to go before national priorities set out under GIRFEC, will be realised for disabled children.

4.11 "If the GIRFEC approach were to be thoroughly and effectively implemented for families with disabled children - a process likely to take some years given the entrenched problems already existing and the transformations in activity and in attitude and orientation that GIRFEC demands - then it would be hugely welcomed by families with disabled children." (Stalker and Moscardini, 2012).

4.12 A report to the Scottish Parliament (Additional Support for Learning and Young Carers, February 2013) included information about the implementation of GIRFEC based on a programme of visits by Education Scotland in 2011/12 in a sample of 11 education authorities.

4.13 The report noted variability in the extent to which the GIRFEC approaches are being used, with some authorities and services embedding the GIRFEC much more fully than others. (Scottish Government 2013)

4.14 It seems from early evidence that the ways in which outcomes are being developed (case-by-case and situation-by-situation) provide examples of how GIRFEC is being implemented in practice, at a local level. The development of policies such as identifying and monitoring outcomes is one way that GIRFEC will be implemented with individual children and in different programmes. As these cover a very wide range of conditions and situations, it will take time to see how GIRFEC works and is being developed through practice.

Survey data

4.15 The survey conducted as part of this study (see Appendix A) included some questions about GIRFEC in the context of outcomes development. The responses, though few, showed a range of commitment.

4.16 When asked whether they used any specific outcomes frameworks or approaches, only a few specifically mentioned GIRFEC. For instance, one said their practice team used GIRFEC, while their occupational therapy team used a different model.

4.17 However, when asked if their outcomes related to the GIRFEC framework, 24 said Yes, and 5 said No. (8 skipped the question).

4.18 When asked if the GIRFEC framework was a good fit with the outcomes framework they were using, 22 said 'Yes', and 3 said 'No'. Some thought GIRFEC was a good fit because it was broad enough to cover everything they would want in terms of outcomes or fitted well with their current frameworks. Others noted problems in how GIRFEC fits with other legislation e.g. the Additional Support for Learning Act, and how existing plans for children fit with the GIRFEC concept of a Single Child's Plan. This highlights a need for greater clarity on the fit between plans

4.19 Some specific comments are illustrative of the range of outlooks among people charged with working with disabled children:

"Although the Transition Team works closely with Children's Services, it is an adult resource."

"The GIRFEC framework, particularly the health and well-being indicators, sit well with the outcomes framework in use."

"The staged intervention process maps easily on to GIRFEC and supports the need to think beyond the academic outcomes which was a message some schools found hard to accept."

"There is a recognition of the interrelationship between the range of goals a young person will have and therefore the need to work in a multidisciplinary way in setting and achieving them."

"There is much to like about the framework. The broad framework is very helpful but descriptors (e.g. healthy, active, included, achieving) can appear devoid of meaning to many parents and disabled young people. Outcomes will differ, and priorities that are meaningful to the young person may have to be developed further."

"If applied properly it can enable children's outcomes to be put first and for children's and parents' outcomes to be balanced."

"Please do not get me wrong, they are not completely at odds, but there are some real difficulties with how the current legislation relating to ASN fits with GIRFEC and CfE. In particular the CSP does not fit with the idea of a single child's plan."

4.20 The commissioning of this work by the Scottish Government signals an intention that disabled children should be fully included within the GIRFEC framework. In looking at the question of outcome models there are a number of elements of GIRFEC that provide practical support, and a direction for implementation, in addition to the SHANARRI wellbeing indicators themselves. The Scottish Government has made clear its intention that the Child's Plan will link with other statutory plans required by some children and young people.

GIRFEC framework tools and principles

4.21 GIRFEC does not provide a prescriptive method, nor a detailed procedure. It does however, provide a framework, some tools and some principles that could and should underpin and inform all outcomes work with disabled children.

4.22 Among GIRFEC's core components, there are a number that are fundamental to the development of outcomes relevant to disabled children:

• An integral role for children, young people and families in assessment, planning and intervention.
• A coordinated and unified approach to identifying concerns, assessing needs, agreeing actions and outcomes, based on the Wellbeing Indicators with a common approach to gaining consent and to sharing information, with consistent high standards of cooperation, joint working and communication, locally and across Scotland.
• A Named Person for every child and young person, and a Lead Professional to coordinate and monitor interagency activity.
• The use of the National Practice Model, common to all agencies, which sets out the steps practitioners should follow to identify and address difficulties.
• The capacity to share demographic, assessment, and planning information electronically, within and across agency boundaries.

The role of children

4.23 The integral role of the child is central to GIRFEC, matching the increasing emphasis on Scottish public services being client-led. How this is done is one of the most difficult areas in implementing GIRFEC and related outcomes work. It is also an area in which GIRFEC to date provides the least specific guidance.

4.24 Enabling children to play a meaningful role, with their parents/carers and professionals, in planning for their needs will help ensure they become more than passive recipients of services. However, meaningful inclusion of disabled children involves a number of issues:

• The child/adult relationship is often not an equal partnership. Adults are often seen as, and deferred to, as 'experts' and controllers of resources.
• Even those closest to the child may be over-protective and not in the habit of giving them the space to express their own voice, or taking their views to heart in making decisions.
• The ability to express their needs and preferences, even in situations of unequal power is something that children can learn, with sensitive assistance.
• There may be communication issues for the child (e.g. if she/he is severely autistic, deaf or has other communication impairments), and for the adults (if they are not skilful or knowledgeable in communicating with children who have communication difficulties).
• It takes time to fully engage disabled children in this sort of discussion, something that many professionals feel they don't have. Relationship building and maintenance needs to be integral to the GIRFEC approach.
• Adults involved in the process will have to weigh the balance between risks and rights which is often settled in ways that limit children's inclusion.
• There may be legal or regulatory constraints on the freedom of disabled children to direct their own needs.

4.25 Stalker et al (2010) highlighted that: "many practitioners lack experience and confidence in communicating with disabled children".

Coordinated approach

4.26 The use of a single planning process can be very effective, as it should mean that:

• The child does not have to participate in multiple different meetings.
• The agencies involved with the child can coordinate their care plans, prioritise the most urgent needs, and identify the most effective care and treatment routes.
• One integrated set of outcomes should be identifiable, including a proper consideration of their priority order and of fundamental outcomes that need to be achieved.

4.27 There are, however, a number of problems and gaps that were identified by this research:

• Resources are allocated by each agency separately. Each has a different system for accessing the resources. Sometimes an agency employee will have to argue for the resources against other competing claims (even within the same public agency).
• Responsiveness and timely support, which is linked to improving the quality of services, has not always been a consistent feature.
• The involvement of multiple agencies with no-one currently having an overall coordinating, decision-making role or resource allocation role.

4.28 The implementation of GIRFEC's Lead Professional should resolve some of these problems. But it will take time for the creation and widespread adoption of this role to deal with issues of different chains of command, different training systems, different work cultures, and different reporting and evaluation/assessment chains (and funding streams).

Named Person and Lead Professional

4.29 Under GIRFEC, every child "will have a Named Person in the universal services of health and education". In the GIRFEC Practice Briefing 1: The Role of the Named Person, the identity of the Named Person is made explicit and their role is to act as the "first point of contact for children and families" (Scottish Government 2010a). Their role is part of their day-to-day work and their "responsibility is to take action to provide help and arrange for the right help to promote the child's development and wellbeing".

4.30 Where a child needs involvement from more than one agency, a Lead Professional will be involved. Since, by definition, a disabled child will need services from at least two agencies (and probably more), this means they will always be assigned a Lead Professional.

4.31 The Lead Professional "ensures that agencies act as a team and fit together seamlessly ... and have a significant role in co-ordinating a multi-agency care plan". (GIRFEC Practice Briefing 2: The Role of the Lead Professional, Scottish Government 2010b).

4.32 Under GIRFEC, the Named Person may be the Lead Professional, . However, "where statutory requirements are involved a worker from a specialist part of health, education, social work or another agency will need to take the lead" (e.g. in cases involving child protection, looked after children, anti-social behaviour or other compulsory measures) (op.cit, 2010b). The Lead Practitioner may be a third sector practitioner.

4.33 Data are not currently available as to how widely these two roles have actually been implemented, nor about how effectively they are working. However, it is clear that they will have a central role in planning, recording and monitoring outcomes.

Assessing Needs

4.34 GIRFEC's My World Triangle is a simple tool that can be used to gather information to understand what is happening to a child and family. It is being applied in a number of situations: for example, it has been developed to use with disabled children in Highland (see Section 5).

4.35 GIRFEC's Resilience Matrix provides a tool to summarise the strengths and pressures in a child's situation, from information gathered using the My World Triangle plus specialist assessments. The information collected is grouped under four headings: resilience, vulnerability, protective environment, adversity (Scottish Government 2012c). This tool builds on strengths and assets, and fits well with the social model of disability. Again, as one of the tools for developing outcomes it is discussed further in Section 6.

Sharing Information

4.36 Sharing information is central to any coordinated working. It must happen laterally (horizontally) among the agencies involved in the care and support of the disabled child.

4.37 It must also be shared hierarchically (vertically) as part of the reporting process, and ultimately should contribute to reporting to national data collectors. In turn, such information should feed into national outcomes and performance data.

4.38 Until recently, it was hoped that the e-care programme would be developed to facilitate information sharing on a local and national basis. Responsibility for the programme was transferred to the Data Sharing Technologies Board (DSTB) who reviewed the programme in 2013. As a result of the review and the lack of take up by areas it was decided to halt the programme. Under the guidance of the DSTB areas are being encouraged to look to local needs and development opportunities for systems. This approach appears to be working with many areas in the process of developing local solutions. Most notable is the development of AYRshare across the three local authorities and health board in Ayrshire. The DSTB - now renamed as the Information Sharing Board - are aware of the need to share information across boundaries and are actively pursuing ways to achieve this.

THE HIGHLAND PATHFINDER PROGRAMME (HPP)

4.39 The GIRFEC pathfinder in Highland started in 2006, and was evaluated by a team from Edinburgh University (Changing Professional Practice and Culture to Get it Right for Every Child: An Evaluation Overview of the Development and Early Implementation Phases of GIRFEC in Highland: 2006-2009. Scottish Government, 2009).

4.40 Disabled children and those with mental health issues were priority groups for HPP.

4.41 Multi-agency strategic planning teams were set up around both groups to develop materials for the Integrated Children's Services Plan.

4.42 At one point, the research questions whether wellbeing indicators should apply to all children, but then suggests that, for disabled children they should be considered developmentally and not as measures of success or failure.

4.43 In the HPP, the GIRFEC approach is widely endorsed as "eminently suitable for disabled children". The adaptation of the My World Triangle in Highland is explained in Section 5.

GIRFEC Conclusions

4.44 It might be suggested that it is redundant to talk about implementing GIRFEC as a precursor to developing outcome models as the two are so inter-related. In fact, the full implementation of an effective outcomes model will assist the implementation of GIRFEC, as they both call for the same processes. It is not so much a chicken and egg situation as an iterative process - a continuous loop - rather than a straight sequence of cause and effect. The implementation of one affects the other (which, in turn, informs the first). The effective implementation of one takes the other further also.

4.45 This might be said also of the individual elements of GIRFEC. For example use of Lead Professionals, a key element of the GIRFEC approach, is also a key element in determining and monitoring outcomes for disabled children. However, it is still unevenly implemented in practice. As best could be determined by this study, most disabled children in Scotland do not yet have a Lead Professional or Named Person who meets the GIRFEC criteria and expectations.

4.46 Future work in this area might therefore take the form of monitoring a range of implementation models and documenting them. This would allow agencies to circulate examples of good GIRFEC-conforming practice as evidence of its effectiveness on the ground.

4.47 Given that many of the outcomes models are in the early stages of development and piloting (see Section 5), it may well be at least a couple of years before this can be done. However, a framework to do this could be put in place now.

4.48 One conclusion is that the wide and deep implementation of GIRFEC as the national approach and framework for assessing and meeting the needs of disabled children could become a global outcome in its own right.

Curriculum for Excellence

4.49 Scotland's Curriculum for Excellence (CfE) is the intensive curriculum for all children (ages 3-18). It sits alongside GIRFEC as part of the framework of Scottish Government policy for all children and young people. In principle, CfE is intended to meet, on an individual basis, the holistic support needs of every student. Therefore, in principle, it could greatly reduce the need for additional support. This aspiration has not yet been achieved in practice.

4.50 There is no scope within this small study to discuss the implementation of CfE in relation to disabled children, except to look at its implications for outcomes development. However, it should be noted that "there is a danger that for disabled children, CfE will simply be mapped onto existing practice with no real change taking place". (Stalker and Moscardini, 2012)

4.51 It was noted in Section 2 that many disabled children have foundational needs that need to be addressed in order to move on to other outcomes, and that communication is one of the widespread fundamental outcomes.

4.52 Stalker and Moscardini caution that "While the language used in the experience and outcomes of CfE portends to place the child at the centre through the use of the first person, it is very likely that the technical nature of the language used would not be meaningful to disabled pupils." For disabled pupils, there is a need for greater collaboration and consultation in education planning. These are, however, among the same issues as apply to the implementation of GIRFEC itself.

SUMMARY OF FINDINGS

This project is framed in the context of Getting it Right for Every Child (GIRFEC) and the SHANARRI Wellbeing indicators.

The survey indicated that most people found GIRFEC to be a good outcomes framework. However, there was concern that:

• There is no consistent data yet available across Scotland to inform how GIRFEC is being used with disabled children.
• Policies where disabled children's needs are not highlighted can inadvertently exclude them. For example, what does 'healthy' mean for a child with a life-limiting medical condition? What does 'achieving' mean for a child with complex multiple impairments?

GIRFEC was found to have the potential to provide practical support in the following areas:

• The integral role of the child: Making sure that disabled children can play a meaningful role in shaping their outcomes.
• The single planning approach: The Lead Professional/Named Person could go some way to addressing this need for integration but will take time to implement. The current lack of someone with an overall coordinating role, particularly in relation to the allocation of resources, has been and sometimes remains a problem.

The Highland Pathfinders Programme indicates that GIRFEC can be eminently suitable for disabled children.

The many outcome models that are being developed across Scotland are valuable examples of how GIRFEC is being implemented in practice and future work should involve documenting these further.