Untitled Document

Alice Paige-Smith and Jonathan Rix
Centre for Curriculum and Teaching Studies
Faculty of Education and Language Studies
The Open University
Milton Keynes
England
a.g.paige-smith@open.ac.uk

This paper explores the experiences of early intervention for three families in England. The case study research considers parental perspectives and children’s experiences of early intervention; what do parents want and what are children’s experiences? In particular the ways in which parents and children participate in early intervention programmes in order to support learning will be explained. Case study data includes interviews with four parents.

The early intervention experiences of three children with Down Syndrome aged 3-4 years old will be described and placed within the context of early years and inclusive education policy and practice in England (QCA, 2000, DfES, 2001, 2003, 2004a, TSO, 2003). Recent recognition within Government policy towards increased parental involvement in the learning of young children will be considered within the context of inclusive education and early years policy and practice. The ways in which parents are encouraged to be involved in developing the learning of their children, and their support from professional services will be considered. The parents’ views and experiences enable a conceptualisation of the implementation of policy and practice, in relation to the opportunities provided and the difficulties encountered. The tensions identified raise questions about whether parents are receiving the kinds of support they need and expect, and in particular whether suitable consideration has been given to the pedagogic models being applied through early intervention programmes.

Introduction

The importance of early intervention is recognised in the creation and implementation of a variety of programmes developed to support children with learning difficulties and disabilities. The incidences and implementation of specific early intervention programmes for these children may vary according to geographical area, trends in practice, developments in understanding about children’s learning, as well as the funding available. This was recognised in the government’s recent strategy for ‘special educational needs’:

‘Families face unacceptable variations in the level of support available from their school, local authority or local health services’

In this paper we will be considering the early intervention experiences of three children with Down Syndrome and their families. We will be focusing on parental views and experiences in the early years and their involvement in supporting their children’s learning. Gibson and Harris (1988) have considered early intervention programmes to be a ‘movement’ characterised by a ‘parent-oriented populist cause’ and an ‘area of professional and scientific specialisation’ (Gibson and Harris, 1988:1). They made these assertions about early intervention programmes in the context of the demise of segregated institutionalised care and education for children in the late 1980s. However, in this paper we will be considering early intervention within a context of the growth of social inclusion and inclusive education policy and practice (DfES, 2004a).

‘Early Intervention’ is the first chapter in the DfES report ‘Removing Barriers to Achievement’ a key document within the governments strategy for ‘special educational needs’ (DfES, 2004a). The document notes that ‘Early Intervention is the cornerstone of our strategy’ (DfES, 2004a: 9) and a part of a generalised reform of children’s services as set out in the Green Paper ‘Every Child Matters’ (DfES, 2003). At the launch of this Green Paper the Minister for Young People and Families announced the need for improving children’s lives: ‘we want to shift the balance to prevention by providing greater support to all families’ (Margaret Hodge, DfES, 2003: 2). The creation of a children’s workforce ‘working together and across boundaries’ (P.Boateng, DfES 2003: 2) is intended to enable intervention and support ‘before families reach crisis point’ alongside ‘greater support to vulnerable children’ (M.Hodge, 2003: 2).

Removing Barriers to Achievement (DfES 2004a) also has an emphasis on inclusive practice, raising expectations and achievement, and improving partnerships with parents. The chapter on early intervention outlined in the report specifies that ‘what we want to see’ is: better information sharing and assessments between professionals (from health, education and social care) around the needs of children and their families, leading to early intervention (DfES, 2004a:10). A variety of initiatives are outlined in the report, including the Early Support Pilot Programme, launched in September 2002 at a cost of £13 million for improving services for young disabled children and their families. This initiative is aimed at improving assessment procedures, and the development of ‘joined up services’, to encourage partnership between agencies and families through changes in practice, such as toolkits for professionals and parents, and the use of key workers and family service plans.

Informing this response was a consultation process carried out with large national voluntary organisations for disabled children (such as Scope and RNID). The resulting guidance ‘Together from the start’ (2003) identified the ways in which the difficulties parents and children experience in the early years should be managed and improved by education, health, social services and special educational needs organisations (DfES 2003, Together from the Start). Guidelines for practitioners include the suggestion that: ‘The child’s name should be used at all times’, indicating an emphasis on effective practice which promotes ‘respect for parents and the value of their children as children first and foremost’ (DfES,2003:13). At the same time as recognising the ‘rights’ of parents and children to be valued, the guidance also considers that parents may require emotional support on the diagnosis of the disability of their child. Contrary to this view, parents have challenged what could be considered to be, ‘patronising’ assumptions by professionals about how they perceive their child (Paige-Smith 2004, Goodey 1992). However, this aspect of parents perspectives has not been acknowledged in the guidance.

The expansion of early intervention services for children and parents is documented in the report ‘Removing Barriers to Achievement’ (DfES, 2004a) which commits to the development and extension of Portage services, through the Sure Start Programme, to cover all local authorities. The National Service Framework for Children (DoH, 2004) a 10 year programme linking health and social care services, endorses the national use of the Early Support Programme professional and family toolkits. The NSF Disabled child standard Standard 8 states the importance of early intervention:

“Delaying early intervention can result in irretrievable loss of function or ability or the intervention being less effective…. Early intervention has a positive effect both in terms of promoting development and minimising decline or regression among children with developmental disabilities.”

The sharing of information and the need for families and children to be consulted and listened to are considered to be essential elements of the inclusive policy and practice relating to early intervention and the family centred approach. There is also an increased link to voluntary organisations representing disabled children and their families and a commitment to the growth of their role (DfES, 2004a). These initiatives are presented as viable and welcomed responses that promote the sharing of information and support for children with learning difficulties or disabilities and their families. However, it is possible that the growth of family centred services could also place additional stress on some parents, depending on the type of contact with professionals. Bridle and Mann (2000), describe their anxiety in their role as parents of children with Down syndrome:

‘Another pressure mothers face is presenting themselves to professionals as coping and competent parents. In the early months of my son’s life, I remember the stress of preparing for the physiotherapists visit – the mad rush to remove the dog hair from the couches, the strategic positioning of Sean amidst his toys and the hardest thing of all – preparing myself to appear calm and in control’

One way of evaluating services set out to support children is by considering parents perceptions. Carlhed et al. (2003) noted that parental satisfaction with the intervention is dependent upon the parents feeling listened to. They suggest that professionals believe that ‘the problem is solved when the resources asked for are provided’ (Carlhed et al. 2003: 71). However, if the solution does not match the problem, parents will not necessarily be satisfied. Carlhed et al. (2003), alongside Dinnebeil and Hale (2003) recognise the importance of parents ‘owning’ the intervention process and recommend that professionals should not give advice unless parents ask for it, and that parents may require help to formulate questions. Carlhed et al. (2003) found that parents prefer verbal and written information, rather than just verbal information and they emphasise the importance of collaboration in the intervention process by using the expertise of both parents and professionals. (Carlhed et al.2003:78).

Dinnebeil and Hale (2003) note how early intervention programmes need to develop partnerships between families and professionals so that families are involved in the process of evaluating the programme, from goal-setting to change implementation. This should include accountability as to how family centred practices have resulted in valued changes for children and their families that result in ‘meaningful outcomes’ for children and ‘positive outcomes’ for families. They suggest that professionals should seek to understand families’ expectations from the early intervention programme, and should ‘clarify at the outset what is feasible and what is not’ (Dinnebeil and Hale 2003: 27). Families value relationships with ‘skilled and competent professionals’ as the most important aspect relating to service co-ordination. More important than being efficient and well organised was the professionals ability to have knowledge of relevant community resources, the ability to teach parents how to meet their children’s needs, and knowledge of child development (Dinnebeil and Hale, 2003).

Bridle, L and Mann, G. (2000) have written about their experiences as parents of children with Down Syndrome:

‘Rather than supporting children’s natural growth and development through normal childhood experiences, early intervention programs operate on a “functional diagnostic” model which prescribes “suitable” activities and governs many early family experiences. While most people these days would not deny the “humanity” of people with a disability, it still seems to be much easier to respond, with therapy, to identified problems and “deficits” than to accept, encourage and support people to be who they are, disability included. We are still, through this system, separating children, and creating the “special needs” family”

They also note the pressure on the family and agree with Micheline Mason (1995) about the negative effects of parental over involvement in therapy:

“For many vulnerable parents of children with disability, particularly in those early months of adjustment, the impulse to “work” with your child rather than enjoying a relationship with the child is established, the “work” and the focus on the future can interfere with enjoyment of the present’

Bridle and Mann (2000) identify a clash or tension between how parents feel the intervention is ‘imposed’ on them at the same time as being judged as parents, rather than being supported to encourage their child to ‘play’ and develop creatively.

The research methodology used for the study included semi-structured, informal interviews with four parents of three children with Down Syndrome. The children were aged between 3 and 4 years old. One family lived in a suburban city area, and the other two families lived in rural settings. All were living in the south-east of England. The interviews were informal and took place in the homes of the families and lasted for approximately one hour. The interview questions were based around parent’s experiences and views of any early intervention which had been provided. One of the researchers had worked with a child with Down syndrome and her family as a teacher and advocate, the other researcher is a parent of a child included in the study. We wanted to find out about the services provided to the families, as well as how parents experience the process of early intervention and their role, within the context of a shift within policy and practice towards inclusion, with an emphasis on early intervention. Whilst there is a subjective involvement in the research, through one of the researchers being involved in the teaching and learning process with his son, this researcher is also in a unique position as an ‘insider’ in the research situation. He was not one of the parents interviewed, however. The research has also been considered within a context of previous research on parental perspectives on early intervention, and the policy documentation relating to early intervention in England.

Grounded theory (Strauss and Corbin, 1998) has been used to analyse the transcripts of the interviews; responses were categorised according to the recurring themes which emerged in the data. The responses, or findings, indicate the similarities in experiences that the parents in the study have had when participating in early intervention. Whilst the research is limited to the perspectives and experiences of four parents and three families, this small scale ‘case study’ research has allowed for an in-depth analysis of parents perspectives on early intervention. The data collected illustrates how the parent is given, or perceives themselves as having, the role of the ‘educator’ of their child. A number of ‘tensions’ from this role emerged as themes.

The children in the study had been involved in a variety of early intervention programmes and activities. They were receiving support from health services, education services and Sure Start as part of a home and child centred intervention programme. One family emphasised how they had initiated support from a voluntary organisation, this family also considered ‘extra curricula activities’ such as Yoga and Ballet to be early intervention. The variety of interventions consisted of: Portage Programmes, Conductive Education, Yoga, Ballet, learning support teacher, learning support assistant, speech therapy, and physiotherapy. Each of the parents expressed their aspiration for their child to be included full time in mainstream schooling, one of the children was attending in mainstream school full time, the two other children were in early years settings, such as playgroup and a special school nursery.

The themes identified in the interviews with parents about their experiences and perceptions of early intervention, were:

In particular, there were tensions and conflict about the parents involvement as educators, or therapists for their child. We will be focusing on this theme in particular, as it also allows us to include a number of the tensions that surround communication, partnership with professionals and inclusion.

It was clear that all parents felt that they were under great pressures to support their children in any way that they could. Robert expressed his aspirations as a parent, and the pressures he felt himself to be under:

‘When you have a child with a special need, you see this is our first child, you feel helpless, you feel as though you want to do everything that you can possibly do in the first year or so, you know’.

Martha explained how their belief in the importance of their role in enabling their daughter to achieve meant that they ‘work very hard’ with Violet:

‘We do support Violet. I think that if a child with Down Syndrome has to succeed Violet will, definitely, you know. If she doesn’t because that’s what she can do. Do you understand? Because a lot of time you wonder if that child was helped that she would have done better. So we do everything we can do, and I don’t want tomorrow look and think I could have done better and she would be better and this or that. So we do everything we can do without excess. You understand?’

Within this view we can also recognise the judgements parents make about their performance as providers for their children: their child’s achievements reflect how much the parents have done for them. This echoes the thinking behind much of the literature about early intervention, in that if we miss our early intervention opportunity then we cannot regain that lost time (DoH, 2004),

This sense of having to perform to a certain standard can mean the parents were not only quick to identify their own weaknesses but also the weakness of the professionals around them. Catherine had thought that ‘everybody was well trained and I’m not, and therefore they should be’ and that it is the role of the parent to ‘Kick start’ and ‘breathe down their (the professionals) neck’. In this case she was referring to the professionals in the playgroup her son attended. He also attended a special school part time which she considered to have a better understanding of ‘where they’re all going…. of what they should be achieving for him’. However, she felt distrustful and concerned about the special school and the playgroup being able to communicate with each other about how to work with her son.

Martha articulated strong aspirations for her child and explained how her views had conflicted with the views of one professional working as a learning support teacher with her child. The learning support teacher had compared her child to other children with ‘special needs’, trying to reassure her that her child was ‘fine’ in comparison to others:

‘Her support teacher ….said “Well Martha, don’t worry because Violet is fine, you know, I have lots of experience, and the experience that I have I can tell you have no worries, because Violet is fine”. But she never really done anything to teach and help Violet…. I don’t want anyone comparing Violet with anyone’.

Martha felt strongly enough about this issue to make sure that her child’s support teacher in the mainstream primary school was changed.

The need to make demands on professionals to meet parental expectations can create additional pressures for parents. Tricia did not consider that she had worked in partnership with professionals and had low expectations of the delivery of services:

‘If you want something, you have got to scream, kick, shout and I’ve become a lot more – what’s the word – outward about things. I never used to shout and scream at people before, but now I’ve had to. I’ve learned that you have to because if you sit back, you get nothing, where as if you shout, scream and kick you get it.’

Failure to gain access to services, can also make parents reflect negatively on their involvement. For example, Catherine expressed guilt about not pursuing physiotherapy for her son:

‘I feel hugely guilty that I’m not busy out there causing a stink about that, basically there’s only so much stink you can cause’

Receiving a service, can itself be seen as a minor victory, but that does not mean that service is accepted in a non-critical way. Catherine had Portage provided for her son, which she considered she was ‘extremely lucky to have’, but she considered Portage to be more about advice about what the parent should be doing:

‘that can be very frustrating, because you think, well I have to do all the caring and the rearing of the child, and this is your area, so you’re expecting you to do this as well’.

Carrying out the activities that are recommended by professionals may prove difficult and can create practical and emotional barriers in the learning process. For instance, Catherine spoke about how she structures her language to speak to her son, sometimes in two word shortened sentences, and signs as well, which is like ‘juggling’:

‘And I often ask him if he understands, but frankly I don’t really know that he does or not, but he responds, he nods, and, you know, indicates that he does understand, but whether he’s actually understanding or not is debatable. He’s probably learned the response that I must say “yes” if it’s a question’

Whilst Catherine talks about how she is deliberately framing her communication with her son, she also values the times when she is with her son and not involved in an educator role:

‘ a just sort of relaxing time, where we sit and snuggle and stuff like that. I don’t want to feel that I’m teaching him something all the time, because I can’t bear it.’

Tricia articulated similar tensions in her role in carrying out early intervention, including Portage with her son:

‘We go through things over and over again, and think I’ve done this and then we do it and think, “Wow, we’ve achieved it!” and then he won’t do it for months, you know, it’s very frustrating because you think “I know you can do it”, but he won’t. So it’s just persevering with a lot of it’

She also described in more detail her experience of the ‘teaching and learning process’ with her son. In her description it is clear to see that she has limited pedagogical resources to call upon. This is hardly surprising, of course, since she had previously had little experience in this field:

‘Well, like recently we’ve been looking at two pictures together and asking him to pick out a picture. And he’ll pick out the picture, hand it to you and you go to do it again and he just won’t do it. And you think, I know you can do it, but he just refuses point blank and just loses interest in it.’

Amongst the four parents interviewed, their perceptions about their involvement with the development of their child’s learning through early intervention included: a sense of anger, failure, frustration, guilt, perseverance, pressure and achievement. The parents interviewed have expressed these feelings in relation to the accessing of services, working with professionals and their role as their child’s teacher, and therapist. Their perspectives indicate that there is an expectation on them to support their child, to ‘do everything’ but that ‘others’ (i.e. professionals) are better trained, and ‘know better’. One of the parents found that delivering an early intervention programme such as Portage, put pressure on her to ‘teach’ the child, rather than just ‘be with’ the child. Another family did not like the approach of their child’s support teacher, who was then replaced by a new teacher.

Support from professional services varied according to each family, and tensions and conflict occurred between parents and professionals providing the service. The tensions focused on how parents worked with professionals and the difficulties parents had in accessing services. The services provided to the families depended upon availability, as well as, according to the parents, the demands they made for specific provision. They described their early intervention experiences with their child according to their expectations and the outcomes that they hope their child would achieve. Their comments also indicate that there is a tension between knowing what their child should be doing and what their child actually does in the teaching and learning situation. It is clear too that the parents interviewed were relying upon a mixture of professional advice, and their own parenting styles, to carry forward the early intervention strategies. They expressed how they struggled both practically and emotionally when the ways in which they interacted with their child did not seem to achieve the ‘goals’ they had been set by the professionals.

Bridle and Mann (2000) have expressed concern about early intervention programmes which follow a ‘functional diagnostic’ model that prescribes ‘suitable’ activities. When evaluating parents and children’s experiences of early intervention within a context of inclusion policies, whilst it is essential that children and families need support, it is also important to consider how support can be provided so that it does not follow a ‘deficit’ view of disability or learning difficulty. Exploring alternative pedagogical approaches towards children’s learning in the early years could possibly alleviate some of the tensions in the teaching and learning situation, which have been found to arise in this study. For instance, Margaret Carr considers the purpose of assessment to be enhancing learning, rather than checking what a child can do against a list of skills (Carr, 2004). In her approach children’s learning is evaluated and communicated to others through learning stories, rather than checklists. She emphasises a credit model of the developing child, ‘disposition enhancing’ and considers that relationships are central to early childhood experience and are:

‘….pivotal to the first messages about the self as learner that children receive in early childhood settings, messages that have an enduring effect on their capacities to learn in later years.’

Writing about children’s literacy development in the early years Miller and Paige-Smith (2004) note the importance of practitioners offering a holistic curriculum based on play and active learning. Miller advocates a curriculum which builds on children’s literacy experiences ‘in the home and community which is embedded in enjoyable and playful experiences’ (Miller and Paige-Smith 2004:125).

Perhaps within a climate of inclusive education, alternative ways of approaching early intervention programmes and models of children’s learning and assessment should be considered? An holistic curriculum, based on play, and active learning, with children’s learning evaluated through narrative learning stories does present an alternative approach to what Bridle and Mann (2000) describe as the ‘functional diagnostic model’ of supporting young children with learning difficulties or disabilities. Dinnebeil and Hale (2003) note how professionals should share the setting of goals and the evaluation of programmes with parents. However, some of the parents interviewed in this study found the expectation to work towards the achievement of ‘goals’ through the setting of tasks to be problematic. This suggests that when implementing early intervention activities and programmes the tensions experienced between parents, children and professionals should be identified, acknowledged, and addressed in order to support the child’s learning.

This small-scale study into parental perspectives of early intervention raises questions about what models of children’s learning are embedded in early intervention programmes and that different pedagogical approaches may affect children’s learning situation. The current policy context of early intervention incorporates the improvement of support for children with ‘special needs’ as outlined in Removing Barriers to Achievement (2004a) which includes the Early Support Programme, the development of key workers, family toolkits providing information on local services and the extension of Portage services. Referring to the family toolkits (DfES, 2004 b) the programme director of the Early Support Programme pointed out that:

‘The materials in the pack are not the intervention; they are only as good as the professional that goes with them and the system that goes with it’

At the same time, these toolkits are considered to be valuable to the parent in so far as:

‘Parents can see the progress their child is making. They will be able to use that tool and say they are progressing against these milestones, and if not, why not’

(Susan Daniels, chief executive of the National Deaf Children’s Society, Guardian 1.9.04)

However, when implementing early intervention initiatives, perhaps there needs to be more of an understanding of parental perspectives and experiences, as well as a consideration of the pedagogical approaches to children’s learning in the early years within a home setting.

Bridle, L, and Mann, G. (2000) Mixed Feelings – A Parental Perspective on Early Intervention, originally published in Supporting Not Controlling: Strategies for the New Millennium: Proceedings of the Early Childhood Intervention Australia National Conference, July 1-23, 2000 pp59-72. Accessed 21.12.04 http://www.altonweb.com/cs/downsyndrome/eibridle.html

Carlhed, C. Bjorck-Akesson, E. and Granlund, M. (2003) Parent Perspectives On Early Intervention: The Paradox of Needs and Rights, The British Journal of Developmental Disabilities, Vol. 49, Part 2, July 2003, No 97, pp. 69- 80

Carr, M. (2004) A folk model of assessment – and an alternative, in Miller, L. and Devereux, J. Supporting children’s learning in the early years, London: David Fulton. p.54-66

Department for Education and Skills, (DfES) (2004 a), Removing Barriers to Achievement; The Government’s Strategy for SEN, Nottingham, DfES.

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Department for Education and Skills, (DfES), (2003) Every Child Matters – Clarke, Boateng and Hodge, Press notice 0175, accessed 18.90.03: www.dfes.gov.uk/pns/

Department for Education and Skills, (DfES), (2003), Together From The Start – Practical guidance for professionals working with disabled children (from birth to third birthday) and their families, Nottingham, DfES.

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Dinnebeil, L. and Hale, L. (2003) Incorporating Principles of Family-Centred Practice in Early Intervention Program Evaluation, Zero to Three, July 2003, pp 24-25.

Gibson, D. and Harris A. (1988) Aggregated early intervention effects for Down’s syndrome persons: patterning and longevity of benefits, in Journal of Mental Deficiency Research, Vol 32, 1-17.

Goodey, C. (1992) ‘Fools and heretics; parents’ views of professionals’ in Booth, T. et al. Policies for Diversity in Education, 165-76. London: Routledge.

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Mason, M. (1995) The Breaking of Relationships, Present Time, January 1995, pp 10-15

Miller, L. and Paige-Smith, A. (2004) Literacy in four early years settings, in in Miller, L. and Devereux, J. Supporting children’s learning in the early years, London: David Fulton. p.124-136.

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Paige-Smith, A. (2004) Parent partnership and inclusion in the early years, in Miller, L. and Devereux, J. Supporting children’s learning in the early years, London: David Fulton. p.45-53.

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Parents perceptions and children’s experiences of early intervention – inclusive practice?

Introduction

Parents perceptions and children’s
experiences of early intervention – inclusive practice?