Social Research Findings - Developing an Outcomes Model for Disabled Children in Scotland

This research was commissioned by the Scottish Government's Children's Rights and Wellbeing Division to identify and develop an outcomes model based on Getting It Right for Every Child (GIRFEC), and the SHANARRI indicators of wellbeing¹, for disabled children and young people in Scotland². It was to include both children with disabilities as defined by the Equality Act 2010 and those defined as having additional support needs in the context of the Education (Additional Support for Learning) (Scotland) Act 2004/9. The project was modified early on to focus on mapping outcomes work that is already in progress, and to identify the essential components of outcomes models.

Main Findings

• Organisations and groups across Scotland are developing a wide range of outcomes frameworks, models and approaches for use with children and young people. Some are being developed specifically for use with disabled children and young people.
• These frameworks, models and approaches currently vary widely, according to the context in which the work is being undertaken, and the 'level' of work involved - individual, service, organisational and national. What is important is that each level should connect and is built up from an individual level using the SHANARRI wellbeing indicators.
• Disabled children have broadly the same aspirations as non-disabled children and the outcomes they would like to achieve are therefore similar. However, for many disabled children and young people, there are fundamental outcomes that need to be achieved as a foundation for others, including and especially, communication.
• Outcomes models for use with individual disabled children and young people must be developed with the children and young people themselves, their parents or carers, and the people and agencies working with them. Care must be taken by professionals to distinguish between the views and aspirations of the child or young person and those of their parent or carer.
• GIRFEC provides the framework for developing an individual disabled child's personal outcomes model based on the SHANARRI wellbeing indicators. These may soon be part of a statutory framework and existing outcomes models must therefore be developed to align fully with this framework.

Disabled Children and Young People in Scotland

There have recently been a number of key studies and reports on disabled children and on children with additional support needs.

There is a consensus across these studies that disabled children have broadly the same aspirations as non-disabled children: namely, that they want to make and sustain friendships with peers; that they want to develop autonomy as they develop and mature, that they do not want to be singled out as different, while wanting their particular needs to be taken account of.

However, many disabled children have basic needs that must be met before others can be achieved - their "foundation outcomes". Achieving these may be affected by multiple conditions or disabilities, and/or by problematic situations in which they live. Being able to communicate was considered fundamental to meeting other desired outcomes, which involves both the child and the people with whom they are in regular contact.

Disabled children often have more than one disability or have multiple needs based on social disadvantage, mental distress or physical or learning disability. Models need to be sufficiently flexible to accommodate individual outcomes. Definitions need to take account of children's views and their full range of capabilities and potential.

Outcomes Models

An emphasis on measuring outcomes in children's services is enshrined in Scottish Government policy, and set out in the Single Outcome Agreements. However, implementing an outcomes policy affects more than local authorities. Cook and Miller (2012) distinguish between outcomes for individuals and outcomes for services, organisations and nations.

The "foundation" level - those closest to the individual child - should feed upwards. The achievement of these foundation outcomes should inform and further the achievement of service and national level outcomes. Additionally, given the multiplicity of agencies providing services to any disabled child, there is a necessity for exchanges of data laterally, between professionals, agencies, parents/carers and providers.

The key elements in this Personal Outcomes Model involves:

• Engaging with the child
• Identifying what is important to the child together
• Planning how everyone involved with the child (including their family) is going to work together to achieve these outcomes
• Recording the outcomes in the child's plan
• Using the information to ensure that what matters to the child and their family is used to influence service planning, implementation and review.

GIRFEC and the SHANARRI wellbeing indicators provide the framework within which foundation outcomes for individual disabled children can feed up into each level of service and national outcome models. Outcomes models that do not link to the foundation levels, and/or are inconsistent across those agencies supporting disabled children and their families, are unlikely to be fit for purpose.

Future progress should recognise that a complex set of interactions involving management, working procedures and reporting mechanisms at all the levels identified, is involved.

Key Elements of an Outcomes Model

There is no single outcomes model suitable for all levels. However, there are a number of clearly identifiable prerequisites for effective outcomes modelling:

• There is no absolute list of outcomes appropriate to all disabled children. A personal outcomes approach is the foundation for every disabled child.
• Involving disabled children in identifying their outcomes is at the core of a personal outcomes model. GIRFEC, Additional Support for Learning legislation, the UNCRC, and the Equality Act, all underpin this approach.
• However, the personal outcomes model and the process of developing such an approach, is not at the core of traditional practice across all agencies and professionals.
• Local ownership: engaging, including and respecting the contributions of children and their parents/carers, and the practitioners they work with, are key.
• Close collaboration between the child, their family and the agencies that work with them, as well as active leadership from frontline staff and management, is essential.
• Time: The notion of "short- medium- or long-term" outcomes is meaningless in the abstract for disabled children. Rather, the time involved in achieving outcomes, and the periodicity with which they should be revisited should be an integral part of the personal outcomes model, not a separate external measurement.
• Outcomes for services at a local level and national level must connect to the personal outcomes model and demonstrate progress towards collaboration and partnership across the children's sector.

Recommendations

• Forthcoming guidance on using the GIRFEC SHANARRI principles of wellbeing must support individuals and agencies to develop their outcomes models based on the personal outcomes model and recognise the complexity involved. Guidance will be helpful to end the current duplication in the development of outcomes frameworks.
• Support will be required to navigate this complex area. Dissemination should be encouraged, together with the sharing of ideas and approaches, including how the use of evaluation tools could help agencies.
• Collaboration and sharing between agencies should continue and be encouraged.
• More effort must be made to support the meaningful involvement and engagement of disabled young people in planning their outcomes.
• Technology that improves communication with and by the child must be made equally available across Scotland and equally accessible to all disabled children.
• Support for parents and carers should also be taken into account especially when the parents themselves have additional support needs.

The Research Process

The research was conducted between December 2012 and May 2013. It involved consultation, using a survey and follow-up interviews with a range of people and organisations involved in developing outcomes models with children and young people. These included ten local authorities, 11 disability organisations, and a number of other people and agencies, totalling in all 49 contacts representing many others across Scotland.

The data provided an understanding of the different ways in which outcomes were being developed in different contexts and of the ways in which this was being related to GIRFEC.

In view of the large amount of work in progress, we were constrained to provide some examples of different approaches to developing outcomes frameworks in different contexts rather than a complete map of everything being developed at this time.

References

Cook, A., and Miller E., (2012) Personal Outcomes Approach: Talking Points, Edinburgh: Joint Improvement Team

This document, along with full research report of the project, and further information about social and policy research commissioned and published on behalf of the Scottish Government, can be viewed on the Internet at: http://www.scotland.gov.uk/socialresearch. If you have any further queries about social research, or would like further copies of this research findings summary document or the full research report, please contact us at socialresearch@scotland.gsi.gov.uk or on 0131-244 7560.