1 Established in 1968, Afasic is a voluntary organisation representing children and young people with speech and language impairments (SLI), working for their inclusion in society and supporting their parents and carers. Many in our client group also have gross or fine motor difficulties and we welcome the review of all the therapy services together as appropriate to a holistic approach to meeting children’s needs. This response, however, focuses mainly on speech and language therapy and the provision of appropriate support for children and young people whose primary difficulty arises from Speech and Language Impairments. Implicit in the response is the recognition that "Speech and Language Impairments" is not a single specific condition but includes a range of different difficulties which can impact on a child and have implications for the nature of therapy provided and the other support needed.

2 The review did not seek to explore the overall effectiveness of the therapy services but the description of current services in the sample areas indicates the need for major change. We are aware of many examples of good practice but the review endorses the concerns expressed by parent members of Afasic and issues brought to our attention by professionals working to support children with speech and language impairments. The review makes it clear, that despite clear accountability of the Education Authorities for provision for children for whom speech and language difficulties are a special educational need, the responsibility of the NHS for effective management of therapy services, Childrens’ Services Plans and other policy initiatives which espouse collaborative working across departments and with the Health Trusts, plus policies which claim that the needs of children are being met, children with speech and language impairments are being failed. Afasic welcomes the clear statements of organisational and management issues currently impeding the provision of effective services to children with speech and language impairments and other difficulties. Afasic recognises that the recommendations are a logical attempt to address some of the systemic problems hampering the achievement of good practice in many areas. However, we are concerned that these recommendations do not go to the heart of the difficulties of providing appropriate services to children nor even provide a positive action plan for ensuring their implementation.

3 Afasic regrets that the review limited itself to possible improvements to organisational and management problems within existing service models. By doing so it risks the same accusation of "tinkering at the edges" levelled by purchasers in the review (Par 95) at previous interventions. A number of reviews of speech and language therapy have been undertaken recently in the UK. These reviews have common strands and taken together, demonstrate that increased knowledge and understanding of the range of difficulties experienced by speech and language impaired children suggests the need for a review of how children’s needs could be met most effectively and services redesigned to that end.

4 Afasic suggests that while, in the short term urgent steps must be taken to improve the management and supply of the provision of therapy services to children, these should be seen as critical but interim steps, pending a review of recent and current research in England, Wales and Scotland to establish the characteristics of speech and language impairments, the impact of different facets of SLI on learning, teaching, social interaction and emotional well-being, the role of the specialist therapist, the effectiveness of direct and indirect therapy, the role, essential competencies and training of teachers and the contributions of other children’s services. Having done so, the Executive should implement new models, not simply of NHS Therapy provision, but of services to children.

5 In commenting on the report, Afasic is therefore offering a different perspective, taking as its guiding principles:

• Childrens’ right to provision
• Childrens’ right to protection
• Childrens’ right to participation

as encompassing the legislative framework for the provision of services to children, the crucial importance of accountability in ensuring that childrens’ rights and children themselves are protected. And, placing the speech and language impaired child at the centre, applying the philosophies of

• The Social Model of Disability
• Normalisation, and
• Inclusive education policy and practice,

which were taken as relevant to the review and informative as drivers of current policy and provision.

6 The Social Model of Disability focuses on the identification and

removal of social and economic barriers for disabled people. For children and young people with speech and language impairments this can mean:

• Barriers to learning: Language is the key to the curriculum and the tool used by both teachers and learners yet teachers are not trained to understand language development or e.g.the process of acquiring vocabulary .
• Barriers to inclusion in the playground: Language is the tool for social interaction and children with SLI are vulnerable and isolated
• Barriers to participation in the hidden curriculum – Other difficulties frequently associated with SLI such as poor memory and organisational skills, create problems for the child operating in complex situations like large secondary schools or in extra-curricular activities while an inefficient technology support service will not help a child feel respected.
• Barriers to social inclusion in the community – as communication is essential to social interaction.
• Barriers to work - as communication is a core skill, increasingly seen as an essential basic competence for employability.

These barriers are more complex and more difficult to remove than those restricting physical access and this approach has implications for the skills and skills mix of staff in schools, further education, training and careers guidance. It demands the identification of how these barriers can be best overcome and service provision designed to achieve this end. This cannot be achieved within existing models .

7 Normalisation dictates the development of holistic schools/centres where the skills mix of staff enable children to develop, progress and achieve. The Review recognises the continuing rise in the numbers of children requiring therapy and the inadequacy of current resources. Systematic workforce analysis and development, and effective management of paediatric therapy services can help in the short term and this recommendation is welcomed. However, this will not, in itself, enable a severely impaired child to live and learn as normally as possible, if therapy is provided in clinical settings and the child is not treated as a whole. The growing number of children identified as needing therapy must lead us to question what is normal. The spectrum of need for speech and language, occupational or physiotherapy suggests the need for consideration of the level of support which can be provided through the curriculum, in the classroom, and through an integrated model which deals with the whole child. Strategic Planning Recommendation (a) recognises this. However, the Strategic shift necessary to bring about these operational changes should be the focus of an Executive led Action Plan based on new nationally devised models which take the different needs of children as their centre and work out to how and where these needs should, in the most normal setting for the child, be met, and by whom, taking into account the necessary competencies. As it stands, this recommendation will lead to piecemeal development and inequitable services.

8 Inclusive education as the current policy for educational provision in Scotland offers a major threat to appropriate provision for children with speech and language impairments in the short term and is a source of concern for parent and professional members of Afasic. Inclusive policy does not of itself provide inclusion. Inclusive practice from the perspective of an Education Authority, is very different from that of a child with SLI or their parents. Paragraphs 124 and 125 describe practical difficulties in providing therapy across a greater number of schools, while par. 126 suggests a longer term strategy for joint training of teachers and therapists. Afasic continues to argue, that until the implications of speech and language impairments are well understood in mainstream schools, until mainstream teachers have skills in dealing with speech and language impaired children, until speech and language therapy is provided as an integrated part of support in schools, and communications technology is well resourced and managed, children and young people will be disadvantaged and excluded in many mainstream settings. Worse, they will have been denied appropriate support to achieve their intellectual potential and their longer term potential for social and economic inclusion put at risk.. Practice is led by policy. But, in this instance, the gap between policy and practice is too wide. All those involved with children and young people with speech and language impairments wish that the policy of inclusion would be to their advantage. The current level of therapy resources and the skills mix of staff in schools means that it is not.

Part 5, Paras 188 – 191 describe some of the issues arising from working within an inclusive education model. The inclusion of parents and children in the forward agenda is welcomed. However, It is regretted that attention is given only to joint in-service training and no reference is made to the need to review the skills mix in schools and pre-service education. It is hoped that current Scottish Executive initiatives will enable these issues to be addressed outwith and across specific therapy and other professions.

9 Afasic welcomes recommendations (e) – (h) but suggests that the actions pursuant on the recommendations be strengthened from "should" to "must". Afasic has long been concerned at the length of time many children wait to be assessed and then to have therapy provided to support their educational needs; the extent of therapy provided (often significantly less than the therapist themselves suggest as necessary), and access to specialist therapists for children with severe low incidence disabilities in certain areas. Anxious parents regularly seek private speech and language therapy to counteract this deficit. On occasion this includes funding the cost of a specialist and offering support to the Authority, more usually, it is to access an adequate level of support. In such cases, the lack of working relationships with schools or other professionals may restrict the effectiveness of the therapy. Afasic’s experience suggests that private provision in Scotland is growing, but is not plentiful.

The extent and ongoing nature of the difficulties has been a clear indication of the low priority given to the provision of speech and language, and other therapies by the NHS Trusts despite national and local policy statements.

10 The loss of therapy support to a child while a therapist is on maternity leave is one the most common complaints voiced by parents. Afasic is pleased that the review recognises this difficulty, the unacceptable management practices which have allowed this to happen and the recommendations to resolve this. Afasic also welcomes the move to involve parents and children in improving the management and organisation of therapy services.

Again, the extent of the difficulties described highlights the low priority given to the provision of therapy by the NHS.

It is suggested that, in addition to the development of flexible employment policies, the gender imbalance in therapy services should be tackled by positive recruitment strategies.

11 The clear allocation of hypothecated funds for the provision of therapists and therapy services is fundamental to the protection of children’s right to provision, for ensuring accountability by those given the responsibility for the management of therapy services to children and young people and for transparency in the level of priority given to the funding of therapy services for children and others at national and local level.

However, Records of Needs are viewed by parents as ensuring access to services. Inconsistency in the implementation of the statutory imperatives of the Record of Needs is well documented and, given the Executive’s plans to abolish the Record , suggestions to break the link are timely, but, on the basis of the arguments given, seen as dangerous. It is accepted that therapy should be provided according to clinical need and outcome focussed. However, the clinical need should be considered in the context of the child’s situation, including learning. In recommending a break between a formal statutory multi-disciplinary assessment of a child where the implications of a child’s difficulties can be clearly described in the context of their environment and with input from the parent and the provision of therapy, the report raises real fears for parents and Afasic as to how children’s rights to provision of therapy will be protected.

There is concern that in moving to abolish the Record, introduce a Co-ordinated Support Plan and break the link with funding for SLI, somehow, the rights of the child to the provision of therapy will be lost in the transition and the ability of the parent to secure appropriate support for their child severely weakened. The review demonstrates that reliance on EA and NHS policies on meeting needs is misplaced.

Afasic would argue for a clearer statement, that in establishing new joint funding arrangements, the link between funding and the identified needs of a specific child is maintained.

The problems inherent in the current funding mechanisms in Scotland are well known and decisions now must focus on how to secure funding for the future in a model which encourages responsiveness to the needs of children. Recommendation (o) is therefore welcomed as potentially reducing the confusion and the opportunity for obfuscation but with caveats as to the importance of transparency and accountability and a proposal that a proportion of the funds should follow the child.

Throughout the report there are references to "The Purchaser" meaning in most instances, the Education Authority and it is challenging to consider the implications if the purchaser had been the consumer. If we accept children’s right to participation, and not to be passive recipient of services bad or good, we must challenge thinking on how future funding can secure their access to such essential personal public services.

Short –term targeted funding can be useful in encouraging new initiatives and developing good practice. It does, however, raise issues of sustainability and should not detract from the provision of a realistic level of funding.

12 Afasic suggests that a more in-depth analysis of the competencies necessary to support children’s development should be undertaken across the therapy professions, education and support staff roles.

Examination of the roles of the different therapists as set out in Appendix B points immediately to links between certain aspects of current therapy and child development and early learning. Research points to a significant incidence of co-morbidity or co-occurrence of developmental disorders and it must be in the best interests of children to be supported in a natural setting where normal development is well understood and staff have the skills and resources necessary to identify and support children with specific or co-occurring developmental delays or disorders at first level.. Access to more specialist support should be available where children’s needs are more complex.

Development of a workforce for children needs to go beyond the current professional boundaries, to find the whole child.

13 Afasic welcomes the recommendations on involving children, young people and families in service evaluation and development but stresses this must be meaningful. Despite known areas and examples of good practice, this review denies the myth of the all-providing Authority or Trust and clearly describes a pattern of mismanagement and ultimately failure to provide quality therapy services for children and young people These problems were known and formed the basis of regular complaints from parents and others which went unanswered. Establishing effective child- centred services will be a major challenge and one which will demand significant input from the Scottish Executive and others.

14 Scotland also lacks a national centre of excellence in child development and speech and language impairments to which parents and professionals might refer for specialist assessment of children with severe low incidence disabilities. The review identifies the importance of highly skilled professionals and the problems of ensuring access to specialists for children. The Scottish Executive should consider how it can draw on the existing range of highly skilled professionals and resources in Scotland, in HEIs in Trusts and elsewhere and establish a national resource to which both professionals and parents can refer to seek support in identifying and dealing with severe and complex difficulties.

15 Afasic regrets the link between labelling and stigmatisation in Par. 10. It is our experience that there is greater resistance to labels amongst professionals – often on the justifiable grounds that a label does not accurately describe a child’s difficulties – but frequently from a philosophical basis. Parents seek clear descriptions of the kind of difficulty their child is experiencing and can use a label as a starting point for finding information and support. Although Afasic argues for a more holistic approach to supporting children’s difficulties it would also argue for clearer descriptions of conditions, implications for support and administrative categories which help target resources.

16 This review has resource implications. Improvement of therapy services to children will demand additional resources. Successful, effective provision of inclusive education will demand more. The two are interlinked. It is hoped that the Scottish Executive will use the opportunity provided by this review and the comments on it to take and resource the bold steps needed to redefine and redesign appropriate therapy and educational services for children in Scotland.

17 Afasic commends this report as a critical first step towards improving the provision of therapy services to children in need.