Perceptions of parents of children with speech and language needs

Eur. J. of Special Needs Education, Vol. 17, No. 3 (2002), pp. 211–227

Are Health and Education talking to each other? Perceptions of parents of children with speech and language needs S. BAND,* G. LINDSAY, † J. LAW,† N. SOLOFF,† N. PEACEY, † M. GASCOIGNE‡ and J. RADFORD ‡ *Centre for Educational Development, Appraisal and Research (CEDAR), University of Warwick, Coventry CV4 7AL, UK †Department of Language and Communication Science, City University, London EC1V 0HB, UK ‡University of London Institute of Education, London WC1H 0AL, UK

Address for correspondence Susan Band, Research Fellow, CEDAR, University of Warwick, Coventry CV4 7AL, UK. E-mail: [email protected]

ABSTRACT This paper reports on the Žndings of a multi-centre, year-long study commissioned in July 1999 by the Department for Education and Employment (DfEE), Department of Health (DOH) and the National Assembly for Wales; the focus here is upon the perspectives of parents of children with a variety of speech and language needs, at various stages of assessment and provision within educational settings. Groups of parents were interviewed about their perceptions of the extent and nature of collaboration existing between the agents of health and education, and during the final ‘research into practice’ stage of the study, parents joined managers and practitioners from the two agencies in discussion groups aimed at generating innovative and practical ideas for facilitating future collaboration between the two agencies. Emphasizing their wish for a partnership relationship with professionals, some parents highlighted professionals’ failure at times to communicate effectively with them. They perceived a lack of transparency in the process of assessment and provision, voicing concerns about continuity of provision, particularly at the stage of transition from primary to secondary education. In a context of insufficiently defined professional roles, some parents lacked conŽdence in a move towards a consultative model of speech and language therapy; they suggested a need for greater mutual understanding between teachers and speech and language therapists to provide a more secure basis for implementing therapy effectively. European Journal of Special Needs Education ISSN 0885-6257 print/ISSN 1469-591X online © 2002 Taylor & Francis Ltd http://www.tandf.co.uk/journals DOI: 10.1080/08856250210162121

212 European Journal of Special Needs Education, Vol. 17, No. 3 (2002)

KEYWORDS Speech and language therapy provision, Health/Education collaboration, parents’ views, professional roles

INTRODUCTION Parental involvement in decision-making and service delivery in the UK features in all recent legislation and guidance on special educational needs (SEN) (e.g. DfEE, 2000), and the Children Act 1989 also emphasizes maintaining parental responsibility and rights. Legislation during the late 1980s and early 1990s has reected the government’s agenda of introducing market-place forces into the public sector, in which education (and health) have been important elements. Parents have received power as individual consumers, though notably not collective political power to inuence the decision-making process which underlies the organization of their children’s education (Vincent, 1996). The 1993 Education Act for England and Wales introduced new arrangements for children with SEN, with a view to extending parents’ right to information about choice of schools, reducing time taken by local education authorities (LEAs) to make assessments and draw up statements of SEN, and extending parents’ right to appeal. Parents were encouraged to behave as ‘critical consumers in the educational marketplace’ (Riddel, Brown and DufŽeld, 1994). Excellence for All Children (DfEE, 1997) and the SEN Action Plan (DfEE, 1998) include as one of their themes the expansion of parent partnerships and ‘Named Person’ schemes, both of which support parents. Other themes highlighted were: empowerment, encouraging parents to collaborate with schools and local services with a view to identifying and meeting children’s needs as early as possible, and entitlement to information about what is being provided in school (Roffey, 1999). More recently, the concept of partnership is enshrined in the revision of the SEN Code of Practice (DfES, 2001). Notwithstanding the conciliatory language of partnership and empowerment so regularly found in legislation of the 1980s and 1990s, however, the propensity for contention and dispute remains. There persists a clear tension between the overriding concern of individual parents for the welfare of their own child, the pursuit of which they see enshrined in law, and the legally binding responsibility of providers in Health and Education to take into account the most effective use of resources in safeguarding the interests of every child. Parent groups have emerged in the absence of any one body at national level to take parental issues on board (Bastiani, 1995). They have ourished too as a result of the mismatch many parents as ‘critical consumers’ experience between the level of SEN provision demanded and that offered for their children. The proliferation of parent groups has also arisen from the difficulty found by individual parents in understanding SEN legislation (Paige-Smith, 1996). Each LEA now provides a named parent partnership ofŽcer on a permanent basis, following on the government’s 1994–7 pump-priming initiative through its Grants for Education, Support and Training (GEST) scheme. The activities of parent partnership ofŽcers include putting parents in contact with voluntary organizations, providing information for parents, helping them with representations and generally giving support and guidance (Furze and Conrad, 1997). A third area of collaboration concerns Portage schemes where professionals and parents collaborate to develop and implement intervention programmes for young children with signiŽcant SEN. Parent partnership ofŽcers, parents’ groups

Therapy provision for speech and language 213

and Portage can all be viewed as examples of initiatives marking progress towards increasing parent–professional cooperation (Wolfendale, 1997). Communication of information to parents, and the manner in which this is done, is emphasized as crucial both to parents’ ability to come to terms with the challenges inherent in caring for a child with special needs, and to the concept of a partnership relationship between professionals and parents (Case, 2000; Holland, 1998). The communication of adequate and appropriate information to parents, however, relies on the existence of good communication between professionals, as well as improvements in multi-professional collaboration (Roffey, 1999). At practitioner level, an issue here is clarity of roles: whether, for example, speech and language therapists (SLTs) will engage in a consultancy or a hands-on casework model (Law et al., in press); and whether educational psychologists use a consultancy or a referral approach to their work (Lindsay and Miller, 1991; Wagner, 2000). Furthermore, collaborative initiatives both provide the opportunity for effective communication between professionals, and indeed require this for success. Ventures involving only one service lose an opportunity. For example, Peck (2000) describes an interesting series of workshops for parents of children with language and communication difŽculties, but these were run by the LEA’s Primary Support Service without SLT involvement. While stressing the importance of collaboration between education itself and parents, the beneŽt of educator–therapist–parent collaboration is not so easily addressed, and not modelled. It seems likely that clarity concerning the operation of practitioner roles will have implications for the nature of relationships and for effective communication between those employed in them, as well as for relationships with parents. Parents, whether viewed as critical consumers of services, the voice for their children’s interests or partners with health and education professionals, may have some difficulty in accessing both the language and the activities of managers and practitioners. For many writers, the ideal of partnership with professionals is brought into question by the realities of the power equation, through which parental concerns may be brushed aside, their needs prescribed by professionals (Oliver and Barnes, 1998). Parents may be marginalized and disempowered (Appleton and Minchom, 1991), reducing the opportunity for parental involvement and participation in an equitable ‘partnership’ relationship with professionals (Dale, 1996). Case (2000) argues that the parent–professional relationship remains unequal, with the professional remaining in the role as expert. He concurs with Dale (1996) and Middleton (1998), however, in suggesting that parental issues should be addressed through a two-way dialogue, as part of a ‘negotiative relationship’. Nevertheless, the process of negotiation implies that concessions will be sought and given in reaching Žnal agreement on a course of action. Where scarcity of resources is widely acknowledged on both sides of the negotiative relationship, and this is certainly the case with speech and language and other therapies for children with special needs (Law et al., 2000), individuals may feel that they have everything to gain in taking an entrenched position. Some may wish to defend equitable allocation of resources elsewhere, while others may wish to pursue provision perceived as the right of an individual child. Moreover, a ‘Žght’ over the limited resources available may well result in inequitable allocation of provision, for those parents who are literate and vocal are likely to win at the expense of those who are less well-informed (Gross, 1996). It seems only to be expected that, as a consequence of such difŽculties, discourse at provider level around managing parents’ expectations should run alongside, and at the same time in contradiction to, rhetoric about partnership. The legislation for SEN in England and Wales is intended to ensure that children’s special educational needs are identiŽed, assessed and provided for. Where these needs

214 European Journal of Special Needs Education, Vol. 17, No. 3 (2002)

are complex and severe, a statutory assessment will be conducted which should include input from an SLT where there are speech and language needs. Parents must be involved in all stages of assessment and decision-making and have recourse to a SEN Tribunal if they are dissatisŽed. In the light of legislation which gives support to parents’ rights to involvement in matters concerning their children’s educational provision, the questions arise: to what extent is professional emphasis upon ‘managing parents’ expectations’ in conict with various models of a professional–parent partnership? In what ways do the relationships between professionals impact on parents’ perceptions that they are regarded as partners in the provision of needs for their children? THE STUDY The scoping study from which this paper arises was commissioned by the Speech and Language Therapy Working Group set up in 1998 under the auspices of the Department for Education and Skills, Department of Health and the National Assembly for Wales to address a range of issues surrounding the provision of speech and language therapy in schools (DfEE, 2000). The study mapped patterns of delivery of service provision in mainstream and special educational settings and identiŽed key characteristics at institutional or practitioner level which are critical for effective provision. At the same time, the study identiŽed features of the relationship between Health and Education services which can act as barriers to effective provision. The focus of this study included all children with speech, language and communication needs aged 0–16 years whose provision takes place in part within a school or early years establishment. These children include those whose speech and language difŽculties are secondary to other factors – hearing impairment, for example – as well as those with primary speech and language difŽculties. Speech and language therapists, who are the key professionals to address speech and language difŽculties, are mainly employed by health trusts, although their services to schools may be funded by LEAs, or in a minority of cases, the SLTs may be employed direct by LEAs (Lindsay et al., in press). In each case, SLT provide services which are at no charge to parents. The study comprised three phases: Žrst, a national survey was undertaken of all speech and language therapy managers in Health Trusts with a community children’s service, and of 50 per cent of all LEA managers in England and Wales. This, mainly quantitative, survey highlighted the nationwide variation of speech and language therapy support to different specialist education provision (ibid.); at the second stage of the project, 15 LEA/Health Trust pairs were selected from responses to Phase One, with a range of levels of perceived collaboration. During this second phase, on-site interviews at managerial, practitioner and parental level provided qualitative data regarding the factors which determine the process of collaboration between Health and Education services. Most of the LEA managers interviewed had roles speciŽc to special educational needs, but job titles included ‘principal education ofŽcer’ and ‘assistant director of education’. In the third part of the study, the Žndings from the Žrst two phases were presented at Žve Health/Education day events around the country. These working meetings were held in Manchester, Leicester, Newcastle, Bristol and London. While managers, practitioners and parents from all LEAs, Health Authorities and Trusts with community children’s services were invited to each meeting, priority was given to those who had contributed to Phase 2 as demand for places exceeded the 40 places allocated in each regional venue, and the 80 places allocated in London. Each stakeholder interest was represented at every venue.

Therapy provision for speech and language 215

Each ‘Research into Practice’ event started with the presentation of a summary of results from Phases 1 and 2, as a basis for full contribution during the subsequent discussion sessions. Participants were assigned in groups of ten to discuss pre-set questions arising out of the data from Phases 1 and 2. A representative appointed by each group recorded an agreed summary of responses on a ipchart. Groups then reconvened for a Žnal plenary session to share the issues raised. As well as ensuring the validity of Žndings from Phases 1 and 2, these working meetings allowed delegates to consider a range of emergent issues, develop themes and suggest both innovative and practical ideas for change, facilitating future collaboration between the agencies of Health and Education. The three phases of the Project were designed to facilitate engagement and development between them, enabling cross-phase validation of data as parts two and three were completed. The data provided a context for an examination of the participation of parents in Phases 2 and 3. PARENT INTERVIEWEES In recent years, emphasis upon the voices of children concerning their educational and care provision has increased (Lewis and Lindsay, 2000). Here it was felt, however, that the role of parents in initiating, mobilizing and maintaining professional engagement with their children’s difŽculties would allow greater insight into issues of inter-agency collaboration in their children’s diagnosis, assessment and placement in provision. As a preliminary step to parents’ inclusion, the Special Education Consortium, comprising a range of user groups, was consulted on how parents’ involvement could best achieve maximum beneŽt for the study. Group interviews were held with parents in 15 areas during the second phase of the study. Contact was established, in most cases, through the Parent Partnership Officer; in two cases, contact was made through AFASIC, the voluntary body for parents of children with speech, language and communication difficulties. These agencies were asked to identify and approach a sample of, ideally eight, parents of children with a range of ages and needs, and with varying lengths of experience of speech and language therapy provision. The overall sample comprised 65 parents of children whose ages ranged from three to 14, with a mix of problems requiring speech and language provision (and frequently other therapy and/or medical treatment). Some of the children had only recently received an initial assessment, others had been receiving speech and language input for several years. The sample consisted overwhelmingly of mothers, though in a handful of cases, both parents appeared for interview; and in two cases, fathers attended alone. In one case, a mother attended with her own (very forceful) parents. Group interviews lasting up to an hour were tape recorded, held either at clinics or on school premises, to suit the convenience of those attending. Selection of parents by the Parent Partnership OfŽcer precludes any claim that those interviews were necessarily representative of all parents of children receiving provision for speech and language communication needs. A pre-existing relationship with the Parent Partnership OfŽcer is an indication that the concerns of this group of parents were particularly well articulated. Nevertheless, the recurrence of issues highlighted by parents with a broad range of sampling characteristics suggests a wider prevalence of the views expressed among the parent population as a whole. At each site, analytic notes, recording key words and phrases from interviewees, were completed alongside Želdnotes. Summaries of each day’s research noted emergent issues and themes, for comprehensive analysis on completion of all Želdwork.

216 European Journal of Special Needs Education, Vol. 17, No. 3 (2002)

Parents were asked about their perceptions of the roles taken by professionals in the process of assessment; communication between health and education professionals, and between professionals and parents in respect of children’s needs; about planning for educational and speech and language support; and about plans for their children’s future development, including their expectations regarding transition from primary to secondary education. Assessment Parents were asked about their Žrst point of contact in the NHS or LEA, the role of this contact in their child’s assessment, and the role taken by others who were subsequently involved. Crucially, parents were asked whether they had any sense of an exchange of ideas between the agencies. Almost every parent interviewed emphasized the importance of early professional engagement with language (and other) difficulties, perceiving a false economy in delaying intervention: later intervention could simply mean that the problem becomes more serious, placing still more demands upon resources. Overall, parents of children with severe disabilities had been able to achieve assessment and provision for (perhaps several types of) therapy with relatively few problems, and there were parents of children with moderate disabilities too who had positive perceptions of the process, e.g. ‘I’ve been very lucky, because everybody supported me; speech therapist, school teachers, paediatrician. I didn’t struggle to get this place [in a language unit].’ Some of those with a positive experience in the early stages of assessment had found a ‘champion’ in their Žrst dealings with a health visitor, GP or hospital doctor. These parents described the efforts of this ‘champion’ as essential to securing access to key individuals who would advance the process of assessment. Chance engagement with someone in a position to negotiate a fortuitous outcome was, quite naturally, viewed positively by parents. Less positively, however, the fact that parents set great store by securing the support of such a Žgure indicates their perception of a vacuum left by the absence of a planned procedure to guide them systematically through the assessment process. The positive comments reported above contrast with those from parents who described obtaining a diagnosis as ‘a Žght’, ‘a real battle’; an important element in parents’ frustration while awaiting diagnosis was the need they reported for repeated ‘chase-up’ telephone calls. Many parents felt that professionals too rarely took the initiative in communicating intended steps towards a diagnosis. Parents could interpret such lack of initiative as indifference to their concerns, as suggested by the following comment: ‘they [the LEA] don’t give a monkey’s armpit about parents.’ As might be expected, evidence from the study suggests that the personal approachability of professionals and their ability to present explanations to parents in a jargon-free way are fundamental to engendering in parents a conŽdence that their concerns are understood. Overall, parents’ comments indicate that discussion with professionals, and advice from them at these early stages, could lay the ground for a realistic understanding of the part which a speech and language therapist will have to play as development needs unfold.

Therapy provision for speech and language 217

Communications There were some parents whose experiences had brought into relief the importance of communications at this professional to parent level, subsuming impressions of the relationships which exist (or not) between Health and Education systems. Other parents did highlight experiences which relate to collaboration and inter-agency exchange of ideas. For some, however, there is an interplay between these two levels of communication: where there are effective lines of communication to the parent, efŽciency and collaboration at inter-agency level can be assumed. Conversely, such collaboration may be perceived as lacking where there is ineffective professional to parent communication. Most comments from parents about communications between Health and Education related to the assessment process and ease of negotiating this. There were parents who had experienced quick assessment of their children’s difficulties and provision of speech and language therapy, marked by positive collaboration among health/education professionals, as for example: ‘the hospital doctor first noticed a problem, then all sorts of people: paediatrician, speech and language therapist, educational psychologists worked together on a diagnosis, and they always kept me informed about what people he’d have to see.’ This parent was one of a number who perceived an ‘exchange of ideas’ between professionals involved in assessment; and the comment about being kept informed reinforces the priority expressed repeatedly by parents in relation to all stages of assessment and provision. Many other parents experienced the assessment stage less as a discursive process between professionals, and more as a process which evolved in isolated stages: parents assumed the professionals involved at each stage might confer privately, but lacked evidence of this. Less positively, a number regarded duplication of reports, or at contradictions in their content, as evidence of a lack of communication between the professionals who produced them. Overall, parents who perceived little inter-agency dialogue, or received little communication from them, experienced the process of assessment and obtaining a statement of special educational needs isolating and alienating. A question exploring whether or not parents were aware of any exchange of ideas between the agents of Health and Education during the assessment process brought little direct response. Parents ignored the issue of exchange of ideas in their replies, describing instead their experiences in obtaining a statement of needs. Many parents felt strongly that adequate access to speech and language provision, widely perceived as poorly resourced and inequitably allocated, could only be assured through a statement of special educational needs under the Education Act 1996: a document which would both describe provision and safeguard that provision from competing claims on the service. Moreover, the majority of parents expressed the view that therapy recommendations are based on Žnancial resources, rather than need. Comments from parents reect the recognition that determination and persistence can bring provision denied to the child of a less vociferous parent.

218 European Journal of Special Needs Education, Vol. 17, No. 3 (2002)

Planning Questions sought to explore the unfolding of speech and language provision after assessment. Parents were asked to what extent they were aware of a planning process at this stage, in which Health and Education had played equally balanced parts. As with assessment, many parents felt that planning speech and language provision took the form of a series of steps, rather than being brought about by a cohesive operation with balanced input from Health and Education. When asked: ‘How aware were you of a planning process?’, a number of parents replied ‘What planning?’. Comments indicate that many parents were unaware whether Health and Education had collaborated in the completion of reports: parents were more concerned with the details of provision being offered than with the allegiance of those who had prepared reports. A few parents found the wording of reports inaccessible, and suggested that the nature and scope of recommendations could and should be clearly conveyed without the use of professional jargon. However, questions about collaboration between departments typically produced comments about communication to parents, as evidenced rather negatively by the following remark: ‘Are people talking to each other? Well, if they are, they’re not letting us know about it.’ Parents who felt that agencies were prompt and proactive in communicating information to them were more likely to have a good sense of collaboration between these agencies, even if lacking hard evidence for this view. Questions asking for parents’ views about strategic planning prompted replies that related rather to service operation. As at the assessment stage, a number of parents felt that the interest of a key individual had facilitated easier access to provision. Many parents felt the need for a named individual who would initiate communication with them, and to whom they could turn for clariŽcation of issues or support. A number were not aware of the availability of a SENCO (special educational needs coordinator) in their child’s school. Service Operation Parents were asked what types of speech and language therapy support their child was receiving, and whether support options were discussed between the LEA and Health Service. They were asked how these agencies had worked together, and how this had changed over time. In addition, parents were asked about their involvement in discussions regarding the nature and frequency of speech and language support to be offered. Most parents made no distinction between inter-agency collaboration at the stages of service operation and of assessment, and no one identiŽed a change in the degree of Health/Education collaboration over time. A good number could no longer recall details of what information had come from which agency, and at which stage, once assessment was completed. A variety of arrangements for delivery of speech and language input was described in a range of settings, including a hospital clinic, an assessment centre and a special school, and in mainstream classroom, in a language unit and the child’s home, and there were mixed preferences relating to delivery. All parents felt included in

Therapy provision for speech and language 219

discussions about provision, though not all were satisŽed that sufŽcient attention was paid to their views. Some parents, however, were quite satisŽed on this count, also with the scope of therapy provided, e.g. ‘We’ve had everything we could have asked for: 1 year’s speech therapy at a cluster, then on to a language unit. That’s how the system should work.’ There was a high level of satisfaction with the speech and language therapy provided, once access was achieved, and many singled out individual therapists for praise. Parents frequently referred to a therapist who had ‘worked wonders’, ‘been fantastic’. However, a number of parents would have welcomed more frequent therapy provision, and where lack of resources limited access to provision, communication of the circumstances to parents was deemed important. Parental dissatisfactions were merely compounded by any failure to relay reasons for the decision promptly and clearly. Paradoxically, the greater the success achieved by a therapist, the greater the disappointment when this therapist left the service, reduced therapy for a particular child or when responsibility for hands-on delivery of therapy fell to another individual. An issue which arises here is how therapists’ role in provision should be deŽned: this might be a consultative role with the implication that other professionals, and parents too, take on responsibility for hands-on therapy, following the advice of the SLT; alternatively, it might be a hands-on role with direct involvement with the child’s therapy throughout. Comments made by parents indicate that most see the role of therapists in this latter way, for a number of reasons. First, many parents had been accustomed to the hands-on model, and felt it had served them well. Many had established a positive relationship with the therapist providing for their child, with a high level of satisfaction with results achieved. While some parents were comfortable with the idea of helping to administer therapy, others preferred to leave this to the therapist, fearing their own lack of training would do more harm than good. In these circumstances, it is unsurprising that some parents should resist the idea of moving towards a model which places responsibility for therapy delivery elsewhere, possibly with a classroom teacher who lacks appropriate training in speech and language therapy and who has many competing claims on his/her time. Particularly noteworthy, furthermore, are the comments from many parents indicating lack of conŽdence that the relationship between the therapist and classroom teacher facilitates a smooth mechanism for the delivery of speech and language therapy, and highlighting a perceived lack of communication or empathy between therapist and teacher. Crucially, speech therapists themselves are not in a strong position to argue the case for the consultancy model with any conviction, in the absence of research evidence which can substantiate claims for its superior effectiveness (Law et al., in press). It seems unsurprising therefore that some parents believe that the drive to lower cost of delivery, rather than the will to offer an improved service, underlies promotion of the consultancy model. Overall, however, by far the greatest consensus among parents was in respect of the perceived need for greater understanding and collaboration at the level of SLTs and classroom teachers. This was considered a priority, whatever the future holds in terms of a consultancy or hands-on role for therapists.

220 European Journal of Special Needs Education, Vol. 17, No. 3 (2002)

The Future Parents were asked how transition had been (or would be) handled from primary to secondary education, and about plans for continuity of speech and language therapy provision. Overall, parents of school-aged children, or those approaching school placement, expressed uncertainty and anxiety about their children’s education in general, and access to speech and language therapy in particular, as was also found in Lindsay and Dockrell (submitted). In addition to fears that children might be placed, contrary to their wishes, in an educational environment perceived as not ideally suited to their needs, many parents were dismayed at the prospect of diminishing or discontinued contact with a speech and language therapist at some stage of school life (indeed many parents of children already at school had already experienced a decrease or withdrawal of provision). Especially among those whose children were transferring from a language unit into a mainstream school, there were fears that the classroom environment would provide insufficient speech and language therapy opportunities. At the time of transfer to secondary education in particular, a central fear for many parents was that speech and language therapy would become unavailable, or at least be much scaled down in mainstream education. A number of parents whose children were at the stage of transfer were considering opting for the private sector rather than settle for a choice of school considered second best. Such decisions were based, however, on reasonably in-depth assessments of the suitability of various schools in the area; and on the availability of a place. There were other parents who found themselves less well equipped to deal with the transition process, for while general information about a school’s facilities is readily available, Žnding a match with the individual child’s needs can prove a complex task. As children approached the transfer to secondary school, many parents would have welcomed more speciŽc advice from professionals who have worked with their children. It was deemed insufŽciently helpful simply to be provided with a list of schools without comments as to their suitability for an individual child. It is noteworthy that the emphasis of parents here is upon advice, which would not detract from their perceived right to a key role in the Žnal decision. On the other hand, there were parents who clearly had given little thought to the future: dealing with the present was proving problematic enough, and they were adopting a ‘wait and see’ attitude. Overall, there was, however, no perception or anticipation of a process which would oversee transition, coming into play as a matter of course as a child neared a transfer point in his/her education, taking into account a child’s health and educational needs with a view to developing and implementing an integrated plan. Table 1 provides a summary of issues discussed above which were highlighted by parents during the interviews, singled out as issues of concern, or which drew praise from them. ‘Research into Practice’ During the discussion sessions on the ‘Research into Practice’ days which comprised Part 3 of the study, many of the issues highlighted as matters of concern to parents during the interviews came to the fore as each group of delegates addressed a number of pre-set questions. These addressed the following issues:

Therapy provision for speech and language 221 Table 1: Key points from interviews with parents during Phase 2 Parents emphasized the importance of:

Of concern to parents were:

Parents praised:

Early professional engagement with SL problems

The experience of some parents of the assessment/ statementing process as a struggle

Some examples of good collaboration between LEA and Health

Clear and prompt communication of information to them from agencies

Vaguely worded statements perceived to evade provision which adequately reects needs

Provision received from the SLT service, once assessment completed

Agencies taking a more pro-active role in initiating discussions with parents

Vagaries of provision perceived as inequitable, and resource, rather than needs, based

The role of individual therapists in providing therapy, and (with other individual professionals) in championing a parent’s cause

A named individual at all stages of assessment/ provision to convey information and advice

Perceived need for a greater mutual understanding between teachers and SL therapists, with more initial training for teachers, despite time constraints

Language unit provision, particularly valued in facilitating different levels of integration as a child’s needs change

Jargon-free presentation of information from Health and Education professionals

The management of continuity of provision, particularly across educational transitions, e.g. from primary to secondary phase

Some parents praised easy access to therapy following a trouble-free process of assessment

— Inter-agency agreement on systems of resource allocation which can maintain the best model of intervention for each child. — The optimum balance for provision of SLT in education and health settings. — Avoidance of practitioner role duplication. — Managing parents’ expectations; squaring parents’ perception of their children’s needs with service deŽnitions of the most appropriate provision. — Examples of effective practice in joint models of service resourcing for children with speech, language and communication needs. — Sharing of health service/LEA providers’ agenda in joint strategic planning. — Clarity of policy at government level. A representative from each group recorded on a ipchart agreed responses to the questions set. Input from professionals at both managerial and practitioner level included comments about the pressures on existing speech and language therapy

222 European Journal of Special Needs Education, Vol. 17, No. 3 (2002)

services which have, to varying levels in different areas of England and Wales, an impact upon maintaining an adequate, and equitable, level of provision. These pressures include insufŽcient speech and language therapists and other key professionals to provide the necessary skill mix, and an increasing demand for services, which may be exacerbated with the placement of greater numbers of children with speech and language difŽculties in mainstream schools. Scarce resources provide a context in which inequities of provision arise and parents feel driven to rely on the statutory statement of needs as a guarantee of provision. Delegates proposed that attention be given to resource mechanisms to explore the feasibility of discontinuing the statementing process, deemed to foster among parents a ‘who shouts loudest gets’ approach. At the same time, at every venue delegates indicated that nationally agreed criteria for needs assessment would help to address the propensity for disproportionate claims upon resources, and would facilitate greater transparency in the decision-making process surrounding assessment and provision. Discussion groups repeatedly identiŽed transparency as a crucial issue. Professionals working in Health and in Education linked the need for transparency with their concern both to develop a relationship of trust with parents and to keep them informed. At the same time, these delegates recognized their own need to collaborate in the information provided, avoiding contradictory information which will merely erode trust and lead to the frustration which some parents highlighted during the Phase 2 interviews. Many workshop participants from both agencies supported a process of joint assessment, which would eliminate the danger of parents receiving conicting information. Moreover, this would curtail the assessment process, and with it a source of much discontent among parents for whom a protracted process has suggested a lack of collaboration between the agencies. At a number of the workshops, managers and practitioners supported the concept of a partnership relationship with parents, and comments suggested variously that such a partnership could refer to decisions taken about therapy provision and to parental involvement in implementing a therapy programme. One group suggested that parents could be formally involved at a strategic level. Professionals felt that on the one hand a more proactive approach from the agencies of Health and Education towards partnership would aid transparency, and on the other hand it would provide a context in which to ‘challenge parental assumptions that more is necessarily best’ (speech and language therapist) and offer training in professional knowledge to parents, for the view that parents have misconceptions about the nature of speech and language therapy was expressed by many (particularly practitioner) members of discussion groups As regards training, many practitioners highlighted the importance of their own training and continuing professional development. Their comments put into context parental perceptions expressed during interviews that professionals involved in the delivery of speech and language therapy, particularly in mainstream schools, are not always equipped to enable a successful meshing of skill bases. In particular, delegates felt that time given to special needs on the curriculum for initial teacher training is too short. They felt that a higher proŽle should be given to special needs (and in this context, speech and language issues, to include communication difŽculties and appropriate classroom techniques) at the school induction stage of the course. Moreover, delegates emphasized that speech and language therapists, as well as teachers, should receive initial training to prepare them for collaborative working and a joint understanding of perspectives. Several delegates drew attention to the potential of training for both underpinning professional ‘expert’ knowledge and for fostering in individual professionals an awareness of the boundaries of their own and others’

Therapy provision for speech and language 223

roles in relation to speech and language therapy, and their complementary nature. Evidence from parent interviews suggests that such enhanced communications between professionals will have very considerable beneŽts for the parents whose children need their services. DISCUSSION The parents who participated in this study were accessed (in the main) through parent partnership officers; the pre-existence of a dialogue between parent and Parent Partnership Officer might be judged as an indicator that the parents interviewed belonged to a group particularly articulate in airing grievances. While many of those interviewed did express some measure of dissatisfaction with some stage of the process of assessment and intervention, however, this was by no means true of all interviewees: a number of parents felt well served by the professionals with whom they had to negotiate, some singling out individual therapists, doctors, health visitors, and so on, for praise. Moreover, the recurrence of themes throughout the interviews and the workshops which followed suggests that the range of views expressed have a wider prevalence among parents of children with speech and language and other special needs generally. Among the parents interviewed, the importance of early intervention was frequently emphasized, yet many reported the reluctance of a health visitor or GP as their Žrst point of contact, or later on a classroom teacher, to take their concerns about development seriously; for some parents, frustration at this stage was followed by a long assessment process, characterized as ‘a Žght’. Later on, parents often felt let down by the absence or withdrawal of provision which in their view their child needed: a view for which they may have received professional backing elsewhere. Reluctance to address parental concerns, denial or withdrawal of therapy may be based either on sincerely formed professional judgement of need, or on a more pragmatic assessment of available resources; but in any event, parents are likely to question the sincerity of a needs-based decision taken in the context of sparse resources. While the phrase ‘who shouts loudest gets’ has credence among parents and practitioners alike, it is easy to understand the suspicion of parents that they are being cynically manipulated into compliance; moreover, lack of transparency surrounding the assessment process itself and the criteria applied to therapy provision are likely to add to their unease. In these circumstances, the concept of a strong partnership relationship between parents and professionals rings hollow indeed. Nevertheless, the responsibilities and rights of partnership, particularly on the parent side of the partnership relationship, are far from clear. As argued by Vincent (2000), the relative desirability of different kinds of parental involvement and types of home–school interaction, their purpose and aims remain unclear, despite widely held assumptions that parental involvement in education is a ‘good thing’. A recent report (Rathbone, 2001) indicated that many parents did not feel that they were involved in a partnership with their children’s schools, neither did they Žnd information about learning and education accessible to them. Home–school agreements have the potential to remedy this sense of isolation, facilitating an ongoing process of clarifying roles and responsibilities between parents and their school (though a more cautious analysis warns of the risks for parents in a mandatory system which inherently affords schools a means of controlling parental conduct (Sykes, 2001). A robust view of partnership has parents as active and central in decisionmaking and its implementation, with equal strengths and equivalent expertise, able to contribute to as well as receive, services, sharing responsibility, and mutually

224 European Journal of Special Needs Education, Vol. 17, No. 3 (2002)

accountable with professionals (Wolfendale, 1983). A number of professional delegates at the ‘Research into Practice’ meetings seemed to have such a concept in mind. Phrases such as ‘parental opinion to be given equal weight’ and ‘engage with parents and seek view actively’ abounded. Some delegates suggested that parents should be actively engaged as early as possible with respect to shared assessment and intervention, ‘to result in shared identiŽcation and understanding of child’s strengths and needs’. Others proposed involving parents in negotiating an action plan for their child as a means of achieving a shared view of realistic intervention aims. More radically, perhaps, another group suggested that parents be given a ‘formal voice’ at strategic level. Both professionals and parents put forward the idea of training for parents to support them in a partnership role (they also identiŽed a need for the initial training of SLTs and of teachers to prepare them for joint working and reciprocal understanding of perspectives). However, the various models of partnership alluded to by the comments above suggest the potential need for parental training at several levels. There might be training which explains and clariŽes the roles of various professionals and how these roles interlink. It is noteworthy here that both health and education practitioners at the workshops expressed the need for a clearer deŽnition of their roles and responsibilities, particularly with regard to the consultancy or hands-on emphasis of their work, and clearly the boundaries of these roles have implications for the expectations which parents may reasonably have of individuals. At a second and practical level, training for parents might seek to bridge in some measure the distinction between professional knowledge and a parent’s knowledge of their particular child. This distinction was emphasized by a teacher at one of the workshops who spoke of the need for ‘acknowledgement of parents’ knowledge and skills and limitations’. Here training could, for example, give parents an insight into the potential beneŽts and limitations of various intervention techniques, and explore ways in which they can play a part – emphasizing, for example, the complementarity of ‘in school’ and ‘out of school’ learning opportunities for children (Wolfendale and Bastiani, 2000). Thirdly, there may be a need to include a grounding in the political and economic principles underlying the allocation, denial or withdrawal of SLT provision (particularly in the case of parental involvement in strategic decision-making). It is noteworthy that new partnership arrangements between Health and Education make it possible to have parents with the casting vote on the joint Boards; here the parent is cast as the ultimate arbitrator of whether collaboration is working effectively. But what would be the resource implications, and what would be the mechanisms for putting in place training which would give parents the tools they need (or augment the tools they already have) as a basis for effective partnership at these different levels? Resource allocation by SLT services is affected by services having competing priorities, with children being only part of the client group, whereas education services provided by LEAs are primarily concerned with the 0–19 age range. The success of training at any level relies on the willingness, capacity and availability of parents to engage with it, and parents are clearly not a homogeneous group (ibid.). Apart from reservations concerning resource implications and parental participation, however, there is an

Therapy provision for speech and language 225

underlying need perceived among professionals to ‘manage parents’ expectations’ and ‘maintain their cooperation’ (workshop delegates), phrases which seem to support a view of parents as ‘clients’ who are peripheral to decision-making, as well as dependent upon experts’ opinions and in need of redirection (Wolfendale, 1983). It seems unlikely that an essentially political agenda which seeks to constrain parental demands, ‘to challenge parental assumptions that more is necessarily best’ (practitioner), will rise above a training ethos which simply perpetuates a subordinate role for them. It is perhaps training at the level of speciŽcs concerning their own child’s speech and language needs, though in the context of a two-way dialogue with professionals, which while helping parents to Žnd a balance between hope and realism, can enable them to make their contribution to an informed decision in respect of their own child’s provision. Among professional delegates the overall view was that the key to managing parents’ expectations and maintaining their cooperation lies in building their trust at both individual professional level and at the level of the employing agencies: a formidable task, perhaps, bearing in mind the propensity for individual personalities either to embellish or tarnish their own employing agency. Early impressions clearly have a strong impact on the building of trust for individual professionals and the agencies employing them, and indeed the successful management of parents’ expectations as time goes by. In this study, parents who felt that agencies were prompt and proactive in communicating information to them were more likely to have a good sense of collaboration between these agencies, even if unable to cite any speciŽc incidents of cooperation. In a sense, the issue of collaboration became important to parents only when it was lacking; when things were running smoothly the question of whether Health and Education are talking to each other did not arise. A key worker who ensures continuity of liaison with individual cases, providing a link with professionals and bringing clarity to issues where parents experience confusion is likely to prove of much value to a policy of greater transparency. Such a policy will clearly give parents greater conŽdence that they are fully appraised of the basis on which proposals are being made. There are clear tensions, however, for professionals in giving unrestrained support to transparency while inequity of provision persists, for in cases where the resource-driven basis for a decision is laid bare, parents may not be prepared to accept alternative ‘second best’ arrangements for their child. The beneŽts of a congenial relationship with parents stemming from professional honesty, clarity and attention to imparting information must be weighed against the risk that transparency may simply encourage parents in the belief that adequate access to provision can only be assured through a statement, with ultimate resort to the Special Educational Needs Tribunal. Moreover, widely publicized tribunal decisions in favour of parents are certain to encourage parents to persist for what they perceive as their children’s right. Trust for the integrity of individual professionals may be insufficient to secure parental cooperation with a system perceived to be inequitable and inadequately funded. Where such failure occurs, the cycle of inequitable provision, overall parental dissatisfaction with ‘the system’ and mistrust for the agencies running it is merely perpetuated. Data from the project suggest that a flexible approach to provision, which acknowledges that a single pattern of provision cannot meet the needs of every child, and offers responsiveness to individual needs, might go some way to breaking this cycle. This poses challenges to the development of inclusive education, where parental choice may not match the model of provision being developed, particularly if this is deliberately being developed as homogeneous, within stream class support (see also Lindsay and Dockrell, submitted). A group of workshop delegates proposed a ‘menu’ of provision possibilities in various settings, with an easy system of transfer between

226 European Journal of Special Needs Education, Vol. 17, No. 3 (2002)

them, though the scope of this choice would undeniably continue to be based on resource as well as needs based criteria. Mindful of this, delegates suggested the ‘ . . . need for a range of models of provision which link both to the disorder of the child and to jointly agreed criteria for access’. They proposed agreement on criteria for needs assessment at national level as an essential basis for progress towards more equitable resource allocation, and it is surely this which in turn offers the soundest basis for optimum professional/parent collaboration, for all models of partnership. REFERENCES APPLETON, P. L. and MINCHOM, P. E. (1991). ‘Models of parent partnership and child development centres’, Child Care, Health and Development, 17, 1, 27–38. BASTIANI, J. (1995). Taking a Few Risks. Cambridge: Black Bear Press. CASE, S. (2000). ‘Refocusing on the parent: what are the social issues of concern for parents of disabled children?’, Disability and Society, 15, 2, 271–290. DALE, N. (1996). Working with Families of Children with Special Needs: Partnership and Practice. London: Routledge. DEPARTMENT FOR EDUCATION AND EMPLOYMENT (1997). Excellence for All Children: Meeting Special Educational Needs (Green Paper). London: The Stationery OfŽce. DEPARTMENT FOR EDUCATION AND EMPLOYMENT (1998). Meeting Special Educational Needs. A programme of action. Sudbury: DfEE Publications. DEPARTMENT FOR EDUCATION AND EMPLOYMENT (2000). Provision of Speech and Language Therapy Services to Children with Special Educational Needs (England): Report of the Working Group, November 2000. London: DfEE . DEPARTMENT FOR EDUCATION AND SKILLS (2001). SEN Code of Practice. London: DfES. FURZE, T. and CONRAD, A. (1997). ‘A review of Parent Partnership Schemes’. In: WOLFENDALE, S. (Ed.) Working with Parents of SEN Children after the Code of Practice. London: David Fulton. GROSS, J. (1996). ‘The weight of the evidence: parental advocacy and resource allocation to children with statements of special educational need’, Support for Learning, 11, 1, 3–8. HOLLAND, S. (1998). ‘The special needs of parents’, Educational Psychology in Practice, 12, 1, 24–30. LAW, J., LINDSAY, G., PEACEY, N., GASCOIGNE, M., SOLOFF, N., RADFORD, J. and BAND, S., with FITZGERALD, L. (2000). Provision for Children with Speech and Language Needs in England and Wales: Facilitating Communication between Education and Health Services (Research Report RR239). London: DfEE. LAW, J., LINDSAY, G., PEACEY, N., GASCOIGNE, M., SOLOFF, N., RADFORD, J. and BAND, S. (2002). ‘Consultation as a model for providing speech and language therapy in schools: a panacea or one step too far?’, Child Language Teaching and Therapy, 18, 2, 145–163. LEWIS, A. and LINDSAY, G. (Eds) (2000). Researching Children’s Perspective. Buckingham: Open University Press. LINDSAY, G. and DOCKRELL, J. (under review). ‘Whose job is it? Parents’ concerns about the needs of their children with language problems’. LINDSAY, G. and MILLER, A. (1991). Psychological Services for the Primary School. Harlow: Longman. LINDSAY, G., SOLOFF, N., LAW, J., BAND, S., PEACEY, N., GASCOIGNE, M. and RADFORD, J. (2002). ‘Speech and language therapy services to education in England and Wales’, International Journal of Language and Communication Disorders, 37, 3, 273–288.

Therapy provision for speech and language 227 MIDDLETON, L. A. (1998). ‘Services for disabled children: integrating the perspective of social workers’, Child and Family Social Work, 3, 4, 239–246. OLIVER, M. and BARNES, C. (1998). Disabled People and Social Policy: From Exclusion to Inclusion. Harlow: Longman. PAIGE-SMITH, A. (1996). ‘Choosing to campaign: a case study of parent choice, statementing and integration’, European Journal of Special Needs Education, 11, 3, 321–329. PECK, D. (2000). ‘An approach to working with parents of children with language and concentration difŽculties’, Support for Learning, 15, 4, 172–176. RATHBONE, N. (2001). Could Do Better. Manchester: Churchgate House. RIDELL, S., BROWN, S. and DUFFIELD, J. (1994). ‘Parental power and special educational needs: the case of speciŽc learning difŽculties’, British Educational Research Journal, 20, 3, 327–344. ROFFEY, S. (1999). Special Needs in the Early Years: Collaboration, Communication and Co-Ordination. London: David Fulton. SYKES, G. (2001). ‘Home–school agreements: a tool for parental control or for partnership?’, Educational Psychology in Practice, 17, 3, 273–286. VINCENT, C. (1996). Parents and Teachers: Power and Participation. London: Falmer Press. VINCENT, C. (2000). Including Parents? Education, Citizenship and Parental Agency. Buckingham: Open University Press. WAGNER, P. (2000). ‘Consultation: developing a comprehensive approach to service delivery’, Educational Psychology in Practice, 16, 1, 9–18. WOLFENDALE, S. (1983). Parental Participation in Children’s Development and Education. London: Gordon and Breach. WOLFENDALE, S. (Ed.) (1997). Working with Parents of SEN Children after the Code of Practice. London: David Fulton. WOLFENDALE, S. and BASTIANI, J. (2000). The Contribution of Parents to School Effectiveness. London: David Fulton.