Developing an Outcomes Model for Disabled Children in Scotland

7 Next Steps: Recommendations

7.1 There is value in the diversity of examples and perspectives that different stakeholders bring as they seek and secure the best outcomes for disabled children⁹. The continuing challenge, and opportunity, is to have greater clarity about the meaning of Scotland's already existing National Outcomes when applied to specific individuals, and especially to the spectrum of disabilities affecting individual children.

7.2 This will involve the continuing collection and sharing of emerging knowledge and experience. Above all, strong leadership is needed at all levels, and especially from the Scottish Government, in those areas where it can only exercise such leadership on a nationwide basis.

7.3 This section lays out some priorities to enable all stakeholders to move to a greater shared understanding of outcomes models for disabled children with consequent easier implementation of agreed outcomes and models.

Who's doing what?

7.4 Many people want to know more about outcomes models, both in general and as they specifically apply to disabled children, and about who is doing what. Knowledge generation and knowledge exchange are important in the development of innovation and continuous improvement of practice.

7.5 The aforementioned work being done by IRISS and the Joint Improvement Team provides an important contribution. More is needed from a wide variety of sources, and especially from those people who are innovating successfully.

7.6 It would be helpful to have more effective and widely known ways of sharing knowledge about the initiatives being conducted in the field, across Scotland. There is a widespread interest in documented examples of outcomes models that are up and running, especially those that have been evaluated (rather than just described).

7.7 It is important that information about developing models does not feed into different parts of Government and then disappear without connecting with all interested parties and with the many current pieces of work in progress.

7.8 Recommendation: Facilitate the creation of a mechanism for sharing information (possibly a knowledge bank - new or pre-existing - preferably online), of outcomes work being done with respect to disabled children across Scotland. This would not need to be permanent and could have a limited life to match the likely time period during which GIRFEC and related models are being more fully implemented and assessed. The knowledge bank should include inputs from all relevant departments of the Scottish Government as well as other relevant parties in the third sector, academia, NHS, local government and other community planning partners.

Evaluation

7.9 Many of the initiatives being developed have evaluation built into their piloting processes. This seems to lead to a thoughtful development process and also results in good documentation of the model being developed..

7.10 Emerging developments should be encouraged to evaluate their work, using a mix of: external and internal evaluation; qualitative and quantitative methods; and formative and summative evaluations. Some training and support would need to be provided to support staff skills in internal evaluation. The evaluation criteria and strategies being used are an important part of what needs to be shared.

7.11 Recommendation: Encourage and facilitate the widespread use of evaluation, with GIRFEC principles at its core and enhanced appropriately to take account of the specific wellbeing needs of disabled children. This should be adopted among all agencies that are developing their outcome models for use with disabled children.

Piloting new models

7.12 It is clear that there is a lot of local energy available across Scotland to develop outcomes models. This could be further encouraged through allocating resources, support, and the dissemination of good examples of outcomes models and frameworks as they are ready to be shared.

7.13 There needs to be a balance between piloting new models and sharing those already developed in order to avoid duplication. To assist this process a distinction should be made between: i) new models that address all disabled children; and ii) new models tailored to each field of disability and/or specific age groups.

7.14 Recommendation: A partnership between disability organisations (including children and parent-led groups) and public agencies, should identify where outcomes work is, and is not, being developed in each field of disability, and for all age groups, and then seek to jointly plan, develop and implement such work. The purpose would be to support and consolidate ongoing work and allow people newly addressing the issue to avoid redoing work that has already been done.

Collaboration and sharing

7.15 Outcomes models can only be implemented successfully on a nationwide basis through a process of meaningful collaboration among all parties concerned. This is also true of GIRFEC, and in Section 3 we suggested that the implementation of GIRFEC and the development of outcomes models should proceed together as a symbiotic relationship.

7.16 Yet the realities for staff working in different bureaucratic environments mean that this can be difficult to achieve. It requires leadership, buy-in within the organisations, and commitment from the staff involved. GIRFEC is based on the importance of meaningful collaboration and the statutory guidance must reinforce the collective efforts required to achieve improved outcomes.

7.17 Recommendation: Statutory guidance on reporting on wellbeing outcomes within integrated children's services planning approach is proposed under the Children's and Young People (Scotland) Bill. Such guidance should emphasise that we aspire for the same outcomes for all children but for disabled children and young people, there is an extra step required - the achievement of their foundation outcomes. Training and development at local level for public bodies and their third sector partners and simpler communication methods that support information sharing within and between organisations, must also be encouraged in the guidance.

Involving disabled children

7.18 Involving disabled children in determining the direction of their lives (including outcomes from services received) is a central principle of GIRFEC but can be difficult to implement within existing systems and structures. It involves both considered work practices, with an assumption of the centrality of the children to the process, and also knowledge and skills about communication with children with disabilities, including the range of communications issues.

7.19 The third sector, universities and SCCYP have taken the lead in showing how to engage meaningfully with children. Involving children properly is their right, has benefit for them, and their lived experience is often insightful and of value to the adults around them about what's needed and to their benefit. However, poorly conceived and poorly handled 'involvement' can be worse than doing nothing.

7.20 There is a range of knowledge, techniques and skills available upon which to build. Again, this needs to be more widely disseminated and needs to become mainstream knowledge for all professional staff working with disabled children.

7.21 Recommendation: Share what has been done already more widely, to make full use of the existing and continuously evolving methods of meaningful involvement and engagement.

Disabled children and technology

7.22 Technology can provide a huge range of support for all people with disabilities. This involves both the assistive technology that can assist with communication and with many other functions and also the use of the very rapidly expanding range of communications technology available.

7.23 Organisations such as CALL Scotland provide significant leadership, knowledge, expertise and support in this area.

7.24 It is critically important for disabled children and young people to have full access to the technology available as it can provide them with the means of communicating with their peers and with the wider world. The same is true for their parents/carers. Additionally this will mean providing access directly to technology based assessment and planning tools, including tools that are designed to help determine and monitor progress towards achieving outcomes.

7.25 Technology can be expensive and not available to all disabled children, especially those living in poverty or in constrained situations.

7.26 Because inequalities are a consistent challenge in relation to disabled children, there is a need to give priority to overcoming these inequalities. This can be accomplished both through the technologies that help manage particular disabilities and the technologies that help overcome issues such as living in a remote location or lack of direct contact with peers having similar conditions.

7.27 Recommendation: Focus on making effective communication facilities and technology equally available across Scotland and equally accessible to all disabled children.

Supporting and involving parents and carers

GIRFEC

7.28 The implementation of GIRFEC and the development of outcomes should proceed together in a symbiotic relationship. Statutory guidance that is now in development, needs to address how the child's wellbeing needs will be fully assessed and supported, and how improved outcomes for disabled children will be achieved. For example, Supporting Our Children's Learning Code of Practice, the guidance that accompanies the ASL Act and is about to be revised, should be clear about how the ASL Act and GIRFEC can complement each other and interact seamlessly.

7.29 GIRFEC is an example of a national framework that is locally implemented. However, care is needed to prevent a 'postcode lottery' where local interpretation and implementation lack consistency across Scotland in relation to disabled children. The forthcoming "GIRFEC provisions" in the Children and Young People Bill should help alleviate this but its implementation will need review.

7.30 Additionally, outcomes for disabled children should be mainstreamed throughout all services (not just the very specialised that are often so good at focussing on individuals and their personal outcomes). By focussing on every child's wellbeing, GIRFEC implementation has the opportunity to better include the many disabled children who fall between the gaps between services or whose disability is not recognised. Guidance should support local systems to achieve this.

7.31 Recommendation: The following three steps could usefully be taken:

• Greater understanding of and commitment to, the GIRFEC ethos of supporting all children's needs, by seeing the child first, then their wellbeing needs, is required across the children's and adult sectors and including parents and carers. Robust guidance supported by a communications and engagement programme, which is focussed on professionals to ensure that communication with children and families is better..
• The inclusion of work with disabled children and their outcomes in any future local evaluations of GIRFEC implementation.
• In the forthcoming Children and Young People Bill and, if the Bill is enacted, accompanying statutory guidance the Scottish Government should: i) minimise the degree to which multiple outcomes frameworks are applied to children, as a result of services being provided by multiple agencies; ii) consider the implications of multiple legal and regulatory frameworks for disabled children, which may constrain their freedom to direct their own needs and plan their own outcomes.

Data and information

7.32 There are key issues around the nature of data collection to document the wellbeing and progress of disabled children. These include: the flow of data between different levels of government; the coordination and matching of data collected; and ensuring that data are collected for all key aspects of the lives and situations of disabled children.

7.33 Better coordination and matching of data from different care systems is required in order to create a seamless flow of data from individual disabled children up to national level organisations. There are currently many separate systems for the collection of data, within different statutory frameworks, and some relevant areas where none appears to be collected at all.

7.34 Creating a unified system of data collection can only be accomplished at a governmental level since it requires the matching of different systems that have different legal and regulatory frameworks. Data collection should involve both qualitative and quantitative data. Qualitative data is more difficult to document in standardised forms and these are often undervalued. Yet they are often the data that provide deeper insight into children's lives and experience. Both types of information are needed. The ways in which such data are recorded, collated and reported should become a normal part of the projects serving disabled children (and their parents and carers).

7.35 Recommendation: The Scottish Government should lead in:

• Making sure that all key aspects of disabled children's lives are equally documented, not just those subject to particular regulatory frameworks.
• Helping to make the different information and data systems integrate effectively.