Developing an Outcomes Model for Disabled Children in Scotland

6 Components of Outcomes Models for Use With Disabled Children and Young People

Introduction

6.1 There is no single outcomes model suitable for all situations, and in view of the incomplete implementation of GIRFEC, even those under development must be local, and not encompass the whole range of levels of outcomes. This is all "work in progress". In this section we identify a number of elements critical to developing a successful outcomes model for use with disabled children and young people.

6.2 Scottish outcomes models that have been and are being developed, differ in some of their approaches. There are, nonetheless some commonalities emerging. Underlying principles that could and should be observed and that underlie any useful outcomes model include the following:

• GIRFEC is the framework, however incomplete its current implementation. New outcomes models should not reinvent it, but work with all the GIRFEC components as far as possible.
• There is an ongoing contextual tension (not conflict) between local flexibility/autonomy and central direction, a reality that must be worked with when planning any work within a Scottish Government framework. Anyone developing an outcomes model in this field must be aware of, and identify the boundaries of their particular work. They should also consider how it relates to different reporting structures.
• When discussing outcome models, it should be remembered that these are based on assumptions and theories. It may be that the model or elements of it need to be changed in the light of practice. This underlines the importance of testing and evaluation.
• Maximum flexibility needs to be built into the system to adapt the models case-by-case Moreover, there are reasonable and appropriate differences between for instance a model for deaf children in pre-school and students on the autistic spectrum in secondary education.

Care should be taken to avoid too much complexity, especially in the presentation of outcomes models to users. Graphic representations should not end up looking like "circuit diagrams for the Star Ship Enterprise" (to quote one respondent).

Pre-requisites

Local Ownership

6.3 This study supports the importance of engaging, including and respecting the contributions that children, parents/carers and practitioners can make to the design and implementation of outcomes models for disabled children. Outcomes models are ideally built on inputs from individuals who are going to be involved in implementing them in-practice.

6.4 The development of an outcomes model also requires: collaboration across and between agencies; leadership within the team developing it; and, buy-in from the wider professional staff that will be involved in making it real.

6.5 This implies active engagement from within each agency involved, including both the leadership and the front-line staff of the agency, which must both demonstrate strong buy-in.

Involving disabled children in identifying their outcomes

6.6 Engaging individual disabled children⁸ in the process of defining their outcomes is at the core of a personal outcomes model. GIRFEC is, of course, about every child. Still, there is implicitly a tension between the needs of each individual child and the systems that beget outcomes models. 'Systems' are more generalised and appropriate to the many, rather than the few or the individual.

6.7 Even though the starting point is the individual child, the process of defining their aspirations and needs involves more than just themselves. The child exists in a network of people: familial, social, and professional. For disabled children this network is more extensive. The interaction of services and support needs to be taken into consideration when defining outcomes. We have alluded earlier to the inherent complexity of communicating effectively with children, especially disabled children with complex communication impairments, to ensure that their voices are fully heard (or in the words of the St. Andrews Project, to ensure a process that is child-led not just child-focussed). There is not space here for a review of the approaches that can be involved though there is a widespread literature on the issue rooted in a number of different fields and including both techniques (e.g. Talking Mats) and processes (notably built around listening.)

6.8 Many of the outcome models discussed previously use a process of triangulation to document the achievements being made by the child - using three or more sources of information to validate their achievement(s). This is an essential process especially when qualitative data or behavioural observations are involved. Triangulation is also a useful concept to describe the process of determining the child's desired outcomes.

6.9 Discussion with individual disabled children will usually involve their parent and/or their carer. This already poses complex questions: if the child is not severely disabled and lives at home with parents, one could expect (hope) that the parent and child will have discussed what the child needs and wants to achieve, and what support is required for their accomplishment. This will often be informal and part of everyday discourse. But if the child is more severely disabled, and/or has a carer as well as a parent, or is living away from home with a carer, then a more formal dialogue will have to take place periodically. In either case, both parent and/or carer ought to be involved in any discussion about the child's projected outcomes.

6.10 The third party involved in planning outcomes (in the context of services to be provided from education, health, social services or other agencies) would normally, under GIRFEC, be the Named Person. However, a disabled child will need services from more than one agency and the person responsible will be the Lead Professional.

6.11 These interactions take place within the context of the services provided by the Lead Practitioner's agency, which in turn are connected to a web of services provided by all the other agencies involved.

Framework for defining outcomes

6.12 GIRFEC has already provided a framework for framing outcomes using the SHANARRI indicators, through the My World Triangle. This has been used by many agencies and organisations: for example, it has been adapted in Highland (see Section 5) where it has been applied to a range of disabilities.

The disabled child's world: The context

6.13 GIRFEC has also provided a tool for documenting and analysing the child's world in the form of the Resilience Matrix.

6.14 The Resilience Matrix uses the following four data sets on two axes to identify the context within which the child lives, and the systems of support to which they have access: vulnerability compared with resilience; and adversity compared with protective environment. They can be extended to frame the issues typically facing disabled children, for example:.

• Vulnerability: May refer to the particular impairment or disability that affects the child and also refer to secondary issues such as mental health issues beyond the physical disabilities or medical conditions.
• Resilience: May be a statement about how well the child has been able to manage disability, and their consequent inclusion in the wider world.
• Adversity: May refer to issues faced by the child in managing the disability(ies), including the social climate within which they live, and with managing environmental factors, such as transport.
• Protective Environment: May refer to the effectiveness of the child's support system including in the first instance, immediate family.

These can be applied to the disabled child's life to highlight the pressures to which they are subject and the support they receive or need, which may well match some of the outcomes they want to achieve. Such considerations will often be central to the achievement of the desired and agreed outcomes for an individual disabled child.

Outcomes used

6.15 There is no absolute list of outcomes appropriate to all disabled children.

6.16 For many disabled children there are fundamental outcomes that need to be achieved as a foundation for others. Effective communication is one fundamental outcome for many disabled children but others vary according to the nature of their disability. These fundamental outcomes do need to be addressed to ensure that disabled children have a basic quality of life before looking at the wider SHANARRI indicators - in other words, outcomes that need addressing first and in the short term.

6.17 Section 5 shows that many outcomes models do use a limited selection of outcomes to start with and collaborative models may agree an "outcomes bank" from within which outcomes can be selected as appropriate.

Time

6.18 Early on in this study, there was an expectation that "short, medium and long-term" outcomes could be defined. However, it is apparent that these can be relatively meaningless terms in the abstract. There are many factors that can affect the time scale for achieving particular outcomes.

6.19 The first is the institutional context in which the child is living. If the outcomes are being measured in an educational context, then a school term (or year) may well be the context, or a period determined by the academic assessment system being used. The time-frame could be different if the child is under medical care, when the time frame of the treatment or care procedure may be dominant. If a child is living with a legally determined framework (being Cared For, in the Juvenile Justice System, or in the Child Protection system for example), the framework will have its own criteria for measuring and documenting progress.

6.20 Some children, particularly those with short-term additional support needs may only have needs for a period, rather than life-long needs.

6.21 For others, especially those with complex health conditions (that may in fact indicate a limited life), the timescale will be very different and the outcomes may involve maintaining comfort and lack of pain rather than achieving new outcomes.

6.22 The notion of maintenance (stabilisation) may also be appropriate in situations where children have disabilities that involve behavioural issues.

6.23 The length of time involved in achieving whatever outcomes are defined for a child should be an integral part of the outcomes being planned, and not a separate external measurement. The timescale should record progress compared with maintenance, and can usefully record journeys or distance travelled. Timescale might also usefully record outcomes achieved en route to achieving longer-term goals (e.g. increased confidence leading to educational achievement).

Outcomes in the context of service delivery

6.24 The disabled child's personal outcomes are contextualised in terms of the professional staff of the different service agencies involved. This makes assumptions about collaboration between the staff of different agencies and joint planning being in place. Whether or not this is the case may depend upon the degree of progress achieved in implementing GIRFEC locally.

6.25 Having identified services needed from different agencies, several separate sets of actions are likely to be involved. Even if effective joint planning and collaboration is in place, services are, in actuality still provided by different agencies. Consequently, there will be a number of streams of activity within each agency involved, concerning probably, a minimum of four different areas of activity:

• Resource allocation and the financial procedures involved.
• Staff activity and inputs.
• Management systems and reporting.
• Data collection (which may be separate and in addition to the above).

6.26 There will be a flow of information within these streams to the other levels, though in actuality, there will be more intervening stages to account for administrative/political needs and community planning and regional data collection.