Developing an Outcomes Model for Disabled Children in Scotland

2 Disabled Children and Young People in Scotland

2.1 There are a number of recent, detailed research and policy reports about services for disabled children¹ in Scotland, each with a comprehensive up-to-date literature review². This section summarises key research evidence related to:

• The children's aspirations and hopes
• How these findings might contribute towards a framework for developing outcomes models.

Our findings are grouped around a number of key themes that have direct or contextual implications for subsequent outcomes work.

• The definition of disability
• Disabled children's broad aspirations
• Disabled children's foundational needs
• Engaging disabled children in planning their services
• The implications of children having multiple conditions
• The availability and sharing of information
• The role of technology in meeting disabled children's needs.

The definition of disability

2.2 'Disabled' children is the preferred term consistent with the social model of disability - a model that has become the norm for most people working in this field and adopted by all the studies reviewed as part of this project. It locates disability in relation to the social, cultural, material and attitudinal barriers that can exclude a person from mainstream life, rather than in relation to individual deficits. This links well with the literature about barriers to social inclusion (Stalker and Moscardini, 2012).

2.3 The legal definition of disability is more narrow and is provided by the 2010 Equality Act: The Act defines a disabled person as a person with a disability. A person has a disability for the purposes of the Act if he or she has a physical or mental impairment and the impairment has a substantial and long-term, adverse effect on his or her ability to carry out normal day-to-day activities. This means that, in general:

• The person must have an impairment that is either physical or mental
• The impairment must have adverse effects that are substantial
• The substantial effects must be long-term
• The long-term substantial adverse effects must have a meaningful impact upon day-to-day functioning.

2.4 This project was framed to include children with additional support needs, who may or may not be disabled in terms of this legal definition. These children are defined by the Education (Additional Support for Learning) (Scotland) Act 2004, as amended, which set in place a broader, more inclusive understanding of additional support needs (ASN), consistent with the social model of disability. The key words in the ASL Act are the ones granting eligibility/rights to children who are not benefitting adequately from their learning opportunities "for whatever reason". The Scottish Government's ASL Code of Practice outlines four factors that may give rise to ASN: the learning environment; family circumstances; social and emotional factors; and disability or health need.

2.5 So, taking these definitions together, we will find that there are children who have additional support needs because they are disabled (although all disabled children may not have additional support needs). There are also non-disabled children who do have additional support needs for other reasons (broadly, though not exclusively, connected with their situation). For example, a child may be subject to bullying, may be homeless, may live in a family where drug or alcohol use or other abuse is prevalent, may be in secure care, and so on. Clearly some of these family or social factors may overlap. These differ from the above definition of disability in that they may not always be long-term or permanent situations (e.g. bereavement, homelessness or being looked after).

2.6 This underlines the complexity around the matter of definition. The Doran Review published in 2012 noted the lack of consensus around the definition of complex ASN (Scottish Government, 2012a). Similarly, Stalker and Moscardini (2012) note that the social model can neglect: the implications of specific impairments; the role of personal experience; and diversity issues.

2.7 So, although in this report we talk about "disabled children", in line with the title of the project, this is an over-simplification. It is used, in the absence of a more accurate, broadly agreed, descriptor, to mean children with additional support needs, which may or may not include a legally-recognised disability.

2.8 This illustrates a tension underlying the whole of this work: legal definitions are inherently generalisations, which attempt to cover whole populations. Individuals do not always fit neatly into such definitions. This is broadly expressed by GIRFEC (the framework for this work). GIRFEC proposes that we should Get It Right for Every Child, and consequently starts from a focus on the individual child, rather than the whole population.

2.9 Unlike the ASL Act, GIRFEC is not restricted to concerns about educational inclusiveness. It is concerned with every child's access to and use of all services that they may need, from all or any agencies or services, at any time and for any length of time, i.e. with inclusiveness in all aspects of life and society. Children may present with additional support needs (for any services) for obvious and critical reasons, from birth onwards, but they may be identified as needing interventions and services only over time. We cannot, therefore, presume that a child has additional support needs until they have been assessed and their needs identified, or it is found that they do not, in fact, have any distinct and significant additional support needs.

2.10 This encapsulates both the problem and the solution. The problem of identifying just which children have additional support needs, given that all such needs are not immediately obvious; and the solution that the focus of GIRFEC is every child. The core of the GIRFEC approach is the process by which the child's needs are assessed and their services planned. This is intended to be a co-operative and where necessary multi-agency process that (while instigated by the agency or parent/carer raising the initial diagnosis or issue), will involve all agencies relevant to that specific child's needs working together. So, while GIRFEC is an approach defined and described on paper, the identification of an individual child's needs is a matter of practice. The particular children whose outcomes we are concerned about will be children receiving services from all or any agencies.(The working of GIRFEC is discussed further in Section 4.)

2.11 This broad definition has implications for the likelihood of developing a single coherent outcomes model. A wide range of different agencies will be involved, each with its own approach, working procedures and regulatory framework. Of course, they all also have their own professional staff trained, socialised and experienced in different sets of terminology, working practices and frameworks. While some promising initiatives are under way in Scotland to bring together staff and practice from health and social/children's services, these include only some of the services involved with, or needed by, particular children.

Disabled children's broad aspirations

2.12 The recent study by Stalker and Moscardini (2012) for Scotland's Commissioner for Children and Young People (SCCYP) (and based inter alia on six studies since 1969) provides a view of disabled children's lives from their own perspective. They found it striking that the main findings from these six reports are very similar.

2.13 A key finding is that disabled children are, in most respects, the same as their non-disabled peers. They have a similar range of interests, pastimes and aspirations, and want to access the opportunities and experiences open to non-disabled children (though with support as needed).

2.14 This finding is reinforced by research from Sloper et al (2007), which explores the outcomes disabled children and their parents wish to achieve.

• Friendships: As with all children, friendship is important. There are often problems associated with losing friends when moving school, taking time out of school, or as a result of living far away from school, which limits access to social and leisure activities where friendships are formed.
• Although disabled children need friendships amongst their peers as a whole, they would also like, and need, to meet others dealing with similar realities and experiences.
• Foundational needs: Outcomes in certain areas of children's lives - physical and emotional wellbeing, communication and safety - were seen as fundamental and needed to be addressed before other outcomes could be achieved. This is a significant issue when planning outcomes, and is discussed in more detail below.
• Progress or maintenance: For some children, maintaining an existing situation was as important and significant as making progress. Maintenance (i.e. no deterioration in their condition or ability to function) could in itself be a successful outcome.
• Autonomy: Disabled children, and especially young people, want more autonomy as they grow older and mature (just like their non-disabled peers).

Disabled children identify their parents, especially their mothers, as very important and usually their main source of support. Parents are typically the child's main advocates (Stalker and Moscardini, 2012). However, in developing autonomy, that means that the parents themselves also need to evolve in their relationship with their child. The movement towards greater independence can be problematic when parents are very protective, a natural aspect of having acted as advocates for their child since early childhood.

• Similarity and difference: Disabled children are "sometimes made to feel different in negative ways". They are commonly subject to prejudice and bullying. Such treatment is exacerbated by a lack of awareness of, as well as by negative attitudes towards, disabled people.

The individual's sense of difference can be heightened by the institutional arrangements for their care and education. This is termed by Stalker and Moscardini as the "institutionalisation of difference", with a child's impairment often being the dominant identity or status ascribed to them. Although 'inclusion' is the policy aspiration and framework for all children throughout Scotland (particularly by Curriculum for Excellence), inclusion policies are not always thought through, and can lead to a "denial of difference". In other words, there is a risk of not giving due recognition to the impact of a child or young person's disability.

2.15 It is clear that whilst disabled children share similar broad aspirations with their non-disabled peers, there are greater challenges for them in achieving parity and genuine social, educational and community inclusion.

2.16 Any framework for identifying and measuring outcomes for disabled children should, therefore, be rooted in the outcomes models used for non-disabled children; that is, they should be focussed on the individual talents, capabilities and interests of the individual child. However, there is an important proviso to this proposition, as suggested earlier and discussed in the next section.

Foundational needs: fundamental outcomes

2.17 Many disabled children have basic needs that must be met before others can be achieved - i.e. their 'foundational' needs and their 'fundamental' outcomes. Achieving these may be compounded by multiple conditions or disabilities, and by the problematic circumstances in which they live and grow.

2.18 Sloper et al (2007) identified research on what outcomes disabled children and their parents desire from support services. Their research included children:

• With complex health care needs
• Who do not communicate using speech
• With autistic spectrum disorders
• With degenerative conditions.

2.19 They found that the strong interdependence of outcomes indicates that:

• Particular attention should be paid to 'fundamental' outcomes
• What the same broad outcome (for instance 'successful learner') means for an individual disabled child could sometimes be very different than for a non-disabled child
• Outcomes needed to be conceived not only in terms of progress, but also in terms of maintenance, e.g. physical functioning.

2.20 Sloper and colleagues focused on a number of fundamental outcomes:

• Communication: Being able to communicate was considered fundamental to meeting a range of other desired outcomes and all those in regular contact with the child need the knowledge and skills to understand a child's means of communication. Apart from giving a child effective 'voice', it opens up opportunities for socialising, being active and becoming more independent.
• However, Stalker et al (2010) note that many practitioners lack experience and confidence in communicating with disabled children. It is often difficult for practitioners who have infrequent contact with disabled children to be skilled at communication. Some disabled children, particularly those with learning disabilities, autism, communication impairments or who are deaf, may need support to communicate, a reality that needs to be in forthcoming statutory guidance on Getting it Right for Every Child (GIRFEC) implementation it is in the ASL legislation - chapter 7 of the Code of Practice.
• Being healthy: Physical and emotional wellbeing are important aspects of being healthy, which can be problematic for disabled children. For some, being comfortable and not in pain is central to achieving other outcomes. But, maintaining health and functioning could be threatened in using health services and by problems with the supply and availability of equipment in different settings. For others, psychological wellbeing may be a concern.
• For children with degenerative conditions, there was a conflict between maintaining physical health and abilities against quality of life. Emotional support was needed in order to cope with these changes and parents stressed the importance of meeting those emotional needs, especially in the end stages, to ensure the child did not feel anxious or abandoned.
• Concern among parents of children with autistic spectrum disorders and degenerative conditions about their child's emotional wellbeing were also noted, supported by the work of Health Scotland's 'Children With Exceptional Needs' project.
• Keeping children safe from exploitation: Abusive relationships and physical danger were highlighted as a concern when a child received care from a number of people, could not communicate well or lacked a well-developed sense of danger. A higher than average incidence of child abuse and neglect has been highlighted by Stalker and others in Child Protection and the Needs and Rights of Children and Young People (2010).
• Enjoying and achieving: Inter-related activities such as socialising and having friends have already been identified as a priority for many. Lack of contact with school friends (outside of school) was seen as a barrier to achieving friendships across all groups and was noted as a source of considerable frustration for some disabled children.

2.21 The foundational needs posed by particular disabilities need to be taken into account when creating appropriate lists of desired or expected outcomes.

2.22 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. For example, full independence and making the same economic contribution as their non-disabled peers may not be feasible or reasonable outcomes for all disabled children.

2.23 What we define as 'success' for a disabled child depends on their own unique reality. Not meeting the norm for an age cohort does not necessarily indicate a poor outcome for a particular disabled child.

2.24 In order to create fair and achievable outcomes, we need to consider each individual child's abilities and potential, and recognise that sometimes, the maintenance of functioning is the equivalent to the mainstream norm of making progress for non-disabled children.

2.25 Further, outcomes need to be identified both by, and for, the child's parents/carers and the professional staff working with them, as well as for the children themselves. Outcomes need to be both realistic and ambitious and must also look to the overall path for that child in the future.

Engaging disabled children in planning their services

2.26 The importance of seeking children's views is a recurring theme in GIRFEC (which in turn, reflects Article 12 of the UN Convention on the Rights of the Child). At the same time, definitions of social inclusion involve the active participation of children and families in decision-making. The ASL Act also identifies a duty to seek and take account of the views of children and young people with additional support needs in decisions about their services and provision.

2.27 Stalker and Moscardini (2012) note that: "Service planners/providers need to tap in more systematically, and in a more varied range of ways, to the way young people view the routes they take through life and the barriers they have to face or envisage." (page 20)

2.28 Our society and its institutions/services need to pay better attention to all children's views and their perceived and expressed needs and aspirations. The degree to which this is successfully accomplished is one of the needs to be addressed in fully implementing GIRFEC and achieving inclusiveness for all children.

Multiple conditions, multiple situations

2.29 Disabled children often have more than one disability (co-morbidities), or have multiple needs such as having to cope with mental distress or social disadvantage as well as a physical or learning disability.

2.30 This can result under current arrangements in multiple professionals from different organisational and reporting structures working with the child, which in turn can lead to multiple outcome frameworks being applied to the child.

2.31 In addition, a higher proportion of disabled children may be looked after, in secure accommodation, on the child protection register, subject to school exclusion or in another educational institution away from the main school. For example, on March 2010:³

• 5% of children on child protection registers were reported as having some form of disability.
• 20% of children on child protection registers were reported with an "unknown" disability status.
• 81% of young people in secure care accommodation had at least one known additional support need, of which 26% were known to have medically diagnosed social, emotional or behavioural difficulties.

2.32 There were a disproportionate number of school exclusions among disabled children, especially those with social, emotional or behavioural difficulties (for Scotland's Disabled Children, 2010). The Doran Review noted that the exclusion rate of pupils with ASN is almost five times greater than for those without additional support needs (Scottish Government, 2012a).

2.33 Stalker and Moscardini (2012) also identified a number of groups that are relatively neglected in the literature, including children: with mental health issues; with learning disabilities and mental health issues; who are deaf or have hearing difficulties; who are looked after and disabled; who are disabled and from Black and Minority Ethnic families; with communication impairments; and who spend long periods in hospital or at residential schools. They say that there may also be disabled children from travelling families and those who are lesbian, gay, bisexual, and transgender (LGBT), but these subgroups are essentially invisible in the literature.

2.34 The immediate impact of these multiple or complex situations is that the children concerned are often engaged with multiple services, sometimes from the independent or third sector, as well as the statutory services from public education, social services and health agencies.

2.35 Each of these bodies will have its own approach to determining outcomes (some legally determined or required) and many more people are likely to be involved in the process of determining these outcomes.

The availability and sharing of information

2.36 Better information is needed in two key areas: the numbers of disabled children and young people in Scotland and data about the services available in each area across the country.

2.37 There are no national data available that accurately count all disabled children and young people in Scotland. The National Review of Services for Disabled Children in Scotland (2011, 2012) noted that: "The exact numbers of disabled children is not known - different data sets span differing conditions and age groups." Whilst we do know how many pupils have disabilities, that does not include all children.

2.38 The Scottish Government funded for Scotland's Disabled Children (fSDC) to conduct a mapping exercise (Setting the Scene, 2010). It found that there are "Significant gaps in information about disabled children in Scotland." This project included setting up a database of disabled children receiving services or support in the public domain with the aspiration that local authorities, health boards and others would submit missing and new information. However, few agencies submitted new data and only one update was submitted. The project is no longer funded for this work.

2.39 fSDC noted that: "If an evidence based approach is to be taken to planning and delivering services, then the starting point must be knowing how many children and young people are likely to need services and support."

2.40 Further, because services for disabled children are potentially provided by so many agencies, there are concerns about consistency across the data produced by these agencies. However, "there is variation too between data gathered by local authorities and that collated by health boards... The different rates of capture shown for each NHS Board are a reflection of differing implementation and utilisation of the system in each NHS Board...This demonstrates the lack of an accurate baseline across the public sector about the numbers of disabled children in Scotland, in our communities and across service disciplines." (op.cit.)

2.41 This is not surprising since these various services operate separately and there has previously not been the desire to have such a coordination of outcome data. In addition, the coordination of such data would need to be effected at a higher level between the Scottish Government, COSLA and the NHS Health Boards. It cannot be accomplished by a small short-term project.

2.42 There are data collected, but only for some conditions and situations. For example, data are gathered at local authority level about the numbers of looked after children who have a disability. There are also Scotland-wide data about disabled children who are on the child protection register and also those in secure accommodation (for Scotland's Disabled Children, 2010). Local authorities have been collecting data about additional support needs and the reason why support is needed, since 2005. There are also data in the 2011 census and in the Growing Up in Scotland study.

2.43 Audit Scotland gathers and publishes local authority indicators on the numbers of people assessed for a service or waiting for an assessment, as well as the numbers of people receiving a service - but only for adults. Similar indicators are not measured for children and young people (for Scotland's Disabled Children, 2010). Although Audit Scotland collates data on the number of respite weeks provided for disabled children under the age of 17 by each Local Authority. In 2006-07, a total of 22,610 weeks were provided in Scotland. This had changed little over 5 years with 22,970 provided in 2011-12. http://www.scotland.gov.uk/Publications/2012/10/7084/1

2.44 Creating a unified system of data collection can only be effected at a governmental level since it requires the matching of different systems that have different legal and regulatory frameworks. If all the sources mentioned above were brought together it would provide at least a better more accurate indicative number of children requiring services.

Information about services and their consistency

2.45 for Scotland's Disabled Children compiled information about the range of services and their availability in all local authority areas in Scotland. It compiled detailed information about the number and type of services and support provided by each local authority and health board and published it on the fSDC website. The survey "elicited a small number of responses; a web search was marginally more successful; there was very little Scottish Government data except on short break provision and self-directed support." (for Scotland's Disabled Children, 2010)

2.46 In terms of strategies, plans, services and support, fSDC found, among other things, that: "Single Outcome Agreements are all in place and, current but very few contain specific local outcomes or indicators relating to disabled children".

2.47 Stalker and Moscardini (2012) found that: "Post-Concordat, there is unevenness of provision across the country and funding for disabled children is not ring-fenced. The amount spent on services for disabled children is almost impossible to identify."

2.48 They also note that the costs of inclusion should be an integral part of service planning and that there is a need for stronger capacity building in mainstream organisations to welcome and properly assist disabled children and young people. There is a strong ethos and expectation of increased inclusion through Scotland's Curriculum for Excellence. This is a welcome development but CfE's potential has not yet been fully realised across the nation.

Disabled children and technology

2.49 Technology provides a huge range of support for all people with disabilities. This involves the technology that assists with communication and many other functions. It also applies to the use of the very rapidly developing range of communications technology available to everybody (not just computers, mobile phones but also the software and applications that are developing equally rapidly).

2.50 CALL Scotland provides critical and significant leadership, knowledge, expertise and support in this area.

2.51 It should be noted that the use of communications technology by young people themselves can provide them with: i) the means of communicating with their peers and with the wider world; ii) ways of accessing directly a variety of technology-based assessment and planning tools, including tools that are designed to help determine and monitor progress towards achieving outcomes; and, iii) using technology to enhance their general wellbeing.

SUMMARY OF FINDINGS

Disabled children share most of the same aspirations, goals and insecurities as their non-disabled peers. It is clear however, that there are greater challenges for these children in achieving parity and genuine social, educational and community inclusion.

Any framework for identifying and measuring outcomes for disabled children should, therefore, be rooted in the outcomes models used for non-disabled children but take into account the following:

The very broad definition of 'disability' means that a very diverse range of agencies could be involved. Each will have their own approach, working procedures and regulatory frameworks.

As with all children, each disabled child has her/his own unique reality - a complex mix of strengths and support needs. What is defined as 'success' for one, may not constitute 'success' for another. This is even more important for children with complex needs, where not meeting the 'norm' for an age cohort may not necessarily indicate a poor outcome (acknowledged in CfE through the concept of the "jagged profile" which acknowledges the different levels at which children learn without any implied judgment).

The nature of disability means the child is more likely to be engaged with a number of different services, all of which will need to collaborate and be involved in developing outcomes for the child (which should be achieved through the full implementation of GIRFEC).

Ensuring that the children are actively engaged in developing their own outcomes is crucial (a duty under the Education (Additional Support for Learning) (Scotland) Act 2004, as amended). However, disabled children are more likely to experience communication difficulties, which means that professionals require specific knowledge and skills to be effective.

Parents are often their child's main advocate. Outcomes need to be created for, and with the child's parents and/or carers, and for the professionals who work with them, as well as for the child themselves.

There are inadequate data about the numbers of disabled children in Scotland, and the services available to them. Coordination of the data needs to be effected between the Scottish Government, COSLA and NHS Health Boards.