SUMMARY

  Scope's response to the government's Action Programme "Meeting Special Educational Needs" welcomed the emphasis on quality early years educational provision.

  Research suggests that early intervention programmes are of particular relevance to infants with cerebral palsy (cp). Early years education for children with cp provides opportunities for the early identification of additional educational needs, and early intervention.

  It also provides an early opportunity for the vital involvement of parents in the educative process. Parents often are the experts on the way cp affects their child. It is important to talk to them to find out as much as possible before the child joins a group.

  Scope supports the Disability Rights Task Force recommendation (4.3) that "Both the National Curriculum and the Early Learning Goals should continue to reflect the needs of children with Special Educational Needs".

  Scope's wide-ranging professional expertise marks us out as a potential partner in developing good practice guidelines for the provision of the means to enable communication and for ascertaining the views of children with communication difficulties, including those using non-verbal means of communication.

  A more child-centred approach must take into account the ascertainable wishes of the child. Disabled children must have the right to early, pre-school provision of alternative and augmentative communications systems when the need has been identified.

  Improved provision requires improved training.

  Involvement of all providers, public and private, local authority social services, education services, relevant voluntary organisations and parents in effective and equal partnership is vital for early years inclusion to work.

  The section "Including the pre-school child with cerebral palsy" outlines some specific difficulties faced by pre-school children with cp.

  The Liverpool Early Years Centre illustrates the opportunities and challenges of an inclusive pre-school environment which empowers children by providing choices and promoting independence. "Children are children first". But disabled children often miss out on these critical early years because not enough thought has been given to the rights of the disabled child.

  Two case studies provide evidence for the need for inclusive early years settings.

  Conductive Education is presented as one of the options available for meeting the needs of children with cerebral palsy and their families.

INTRODUCTION

  1.1  Scope welcomes this opportunity to contribute to the Education Sub-Committee's inquiry into aspects of early years education. Scope is a member of the Special Educational Consortium (SEC) which is submitting a separate document based on a wide range of policy issues around early years, agreed through an ongoing process of discussion and consensus-building. Our own paper aims to highlight some of the specific issues concerning disabled pre-school children, particularly those with cerebral palsy (for more information on cp, please see Annex 1) (Not printed).

  1.2  Early years education is important as it provides an opportunity for the early identification of additional educational needs, and an opportunity to start tackling them as quickly as possible. It also provides an early opportunity for the vital involvement of parents in the educative process. As more children with very complex disabilities (who may have multi-sensory disabilities, severe and physical disabilities) are surviving, there is a challenge to meet their needs on a local basis, with access to regional and national specialist multi-agency support and advice where necessary.

  1.3  The Department for Education and Employment consultation document "Meeting Special Educational Needs—a programme of action" of November 1998 promised that the government would improve the support and advice for parents and carers by providing "high quality early years education and childcare". It would also encourage "earlier identification of difficulties and appropriate early intervention", for "children with physical disabilities, sensory impairments, severe learning difficulties or speech and language impairments" when their special needs are first suspected. Early Excellence Centres would give "priority to multi-agency support for children with SEN and their parents".

  1.4  In her analysis of ten evaluation studies of educational interventions for infants and pre-school children with cerebral palsy, senior educational psychologist Lisa Woolfson[16] concluded that "Early intervention programmes are of particular relevance to infants with cerebral palsy because motor difficulties can limit the sensori-motor experiences available to them, affecting subsequent learning and developmental progress. Helping these children access the learning experiences normally available to non-disabled infants would seem to be an important intervention goal...".

  1.5  In Scope's response to the Action Programme we welcomed the emphasis on quality early years education and support for parents, and the principle of early intervention and identification of difficulties. We also highlighted the Schools for Parents Network which, in conjunction with local authorities, provides opportunities for early intervention and demonstrating excellent early years practice.

  1.6  Given our wide-ranging professional expertise, Scope is well placed to be involved in developing good practice guidelines for providing the everyday means to enable communication and for ascertaining the views of children with communication difficulties. This includes the highly specialised expertise within Scope of working with disabled children who use non-verbal means of communication, and with their parents. Scope also has a strong child protection policy backed up by a wealth of experience and in-depth training.

  1.7  The Disability Rights Task Force recognised that "the increasing provision of childcare together with education for under fives is ... problematic. Childcare is already covered by Part III of the DDA [Disability Discrimination Act]" and it "did not wish to see some providers subject to two different pieces of disability legislation whilst providing complementary activities" and "recognised that work needed to be done to determine where the dividing line should be so that providers were left in no doubt to which legislation they were working".[17]

  1.8  Scope strongly supports the Disability Rights Task Force recommendations (4.3) that "Both the National Curriculum and the Early Learning Goals should continue to reflect the needs of children with Special Educational Needs".

  1.9  A key requirement for improved provision is improved training. There is a need for qualified personnel with appropriate qualifications and adequate rates of pay, and for a quality environment. Qualified staff can make a difference through an early analysis of children's strengths or additional needs.

  1.10  Involvement of all providers, public and private, local authority social services, education services, relevant voluntary organisations and parents in effective and equal partnership is vital for early years inclusion to work.

2.  INCLUDING THE PRE-SCHOOL CHILD WITH CP[18]

  2.1  From the moment of birth, or very soon after, the child with cp has very different learning experiences than his/her non-disabled peers. Babies experience a short, frustrating period of helplessness quickly followed by an increasingly active exploration of their world. They experience their world through lying, sitting, reaching, rolling, crawling and standing. In a few short months they are up and away.

  2.2  Babies born with cp do not explore their world independently at the same times as their peers, if at all. Many, in addition to the physical difficulties, also have altered perception of space and altered sensations of touch. The picture they build of their world may well be a very different one than others of their age.

  2.3  The pre-school setting commonly understands the needs of a broad range of children. Staff are used to realising the potential of the bright, articulate and confident alongside nurturing the sensitive, quiet and slow. Staff will quickly identify the child who regularly plays in a garden and the child who is used to playing in a group. Those who work in pre-school settings feel confident with these differences and even biting, snatching and tantrums are coped with calmly and positively.

  2.4  When a small child with cp joins the group staff will have little or no previous experience to draw on and will be unsure of their ground. The reassuring thing is that they already have a broad range of experience and this will form a firm foundation. Knowledge will bring confidence.

  2.5  Four out of ten babies with cp have other difficulties. Some children have great difficulty unscrambling the messages they receive from their eyes. This is associated with damage to the cortex. In the most severe cases the child may appear blind but more commonly she will have difficulty making sense of pictures or writing.

Spatial awareness

  2.6  Many children have difficulty with spatial awareness. If they are walking or moving their own wheelchair this may mean they bump into things and cannot judge the speed of care as they cross the road. In the group they may find it difficult to judge how much space they need and may "push in". When they are asked to hold the image of a shape in their head they may find this very difficult. E.g. "Imagine a square and tell me how many sides it has got". This becomes even more difficult when the shapes are three dimensional like cubes or pyramids.

Communication

  2.7  It is important to be able to recognise early communication skills and the need for targeted therapy for children. If a more child-centred approach is to be developed, taking into account the ascertainable wishes of the child, they must have the right to early, pre-school provision of alternative and augmentative communications systems when the need has been identified.

Hearing difficulties

  2.8  Hearing difficulties are most commonly associated with the athetoid form of cp but it is important to remember that colds and glue ear affect all children. Many children are sensitive to sounds and startle at loud noises. Usually they become more tolerant of noise as they become used to the group.

Speech problems

  2.9  Speech problems may result from difficulty in getting messages from the brain to the tiny muscles of the mouth and tongue or may come from actual abnormalities in the speech centres of the brain. The advice of a speech therapist is vital to suggest the best way to help the child communicate and also give advice if there are chewing or swallowing problems.

Alternative forms of communication

  2.10  Most children will use speech to communicate but some will need an alternative form to either help them make their meaning clear or as their best way of talking. If the child gets his speech aids early it can help reduce frustration. Using a speech aid will never prevent speech and it can help the child take part in group work and shout out with the others. Speech and language therapists will help to recommend what the child needs. Pictures and symbols are also useful and fit into the pattern of pre-school life. The child with fine motor difficulties may need to be assessed as to how he will use the computer. Switches may be large for the hand or small for the knee or head. Most children who have fine motor difficulties will need to rely on computers as they go through school and need to use them from the earliest age.

  2.11  Early communication difficulties may be symptomatic of a learning or other disability, and an approach which would merely tackle the communication difficulty would be ineffective without addressing the child's wider needs.

Epilepsy

  2.12  Epilepsy affects three out of ten children and is usually well controlled. The medicines themselves may affect the child's behaviour and learning and the likely effects should be recognised. Where children may have a "fit" in the group it is important to reassure staff by doing a thorough risk assessment and gaining confidence in how it will be handled.

Other factors affecting learning

  2.13  Many youngsters with cp have odd sleep patterns that can affect their readiness to learn. They will be frustrated by their disability and may be angry.

  2.14  Many children, even those with average or above average ability, will have difficulty with speaking, reading, drawing and mathematics. When the children are young it can be difficult to know whether the learning difficulty is because of ability or because of the barriers. It is important to spend time observing the child in different situations: eg watching the eyes, watching for signs of anticipation, realising when s/he gets angry with him/herself when unable to complete her task. These signs will help gauge the level of ability.

Support for parents

  2.15  Each child is an individual. In most cases the parents have already become the experts on the way cp affects their child. It is important to talk to them and also the therapists or other carers to find out as much as possible before the child joins the group. It is vital that staff other than the child's support assistant become confident in handling, positioning and communicating with the child. A child may visit the group without this happening, a child may be made welcome, but for the child to be included everyone has to feel confident.

3.  LIVERPOOL EARLY YEARS CENTRE

  3.1  Liverpool Early Years Centre (LEYC) provides a nursery in which disabled and non-disabled children play and learn together. LEYC is supported by funds from Liverpool City Council for a maximum of 40 children per day (20 disabled, 20 non-disabled) from the ages of 18 months to five years. They enjoy an integrated environment which aims to meet the physical, emotional, educational and social needs of all the children who attend.

  3.2  Referrals for non-disabled children are via social workers and health visitors, and for disabled children also through other health professionals.

  3.3  All the children are deemed as "in need" as defined by the Children Act 1989.

  3.4  The nursery has undergone many changes in recent years to keep abreast of current Government initiatives as outlined in its Early Years Strategy, and is currently working towards inspection by OFSTED, whilst in receipt of the Government's funding for three and four year olds.

The need for training

  3.5  Physical disability is a very complex area. The spectrum of physical disability is wide and varying causes—physical, neurological, metabolic—produce very different and changing educational needs. Staff need to be aware of this complexity and have some knowledge of the mechanisms of motor education and the speech and language needs of children. Standardised accredited assessment of their acquired competencies could be developed into recognised qualifications.

  3.6  LEYC has identified training as an area in which there are huge gaps. These need to be addressed during the initial training period for early years workers, supported by an ongoing training programme for all qualified staff in order to ensure that practice is current and relevant.

  3.7  Through the links the LEYC has established with Liverpool's Early Years Development and Childcare Partnership, the Centre has been able to access additional training for staff, specifically in the area of curriculum planning.

  3.8  training is an important issue in regard to staff working with children with additional needs. The content of related topics in current training courses for Early Years Practitioners is minimal and does not prepare an individual for work with a child who may have complex needs.

  3.9  The LEYC believes that an additional period of six to 12 months' specialised training, aimed at staff who wish to work with children with additional needs, and one which would provide a further qualification would address the issue. The current Diploma in Nursery Nursing is a two-year full-time course and is still one of the most widely recognised by employers.

The emphasis on education—concerns

  3.10  The LEYC's concerns and that of many of their colleagues working in other Early Year settings is that the emphasis on "education" is overriding all else.

  3.11  "Education" and "teaching" need to be considered in the broadest possible sense. It is critical that whilst practitioners are ensuring that children are achieving their "goals" they do not lose sight of the importance of preparing a child emotionally and spiritually for their journey into adulthood.

Inspections

  3.12  With the changes in inspection arrangements it is critical that Early Years inspectors have the skills and experience that matches the diversity of settings they will be required to inspect, from voluntary playgroups through to maintained nursery schools and classes.

  3.13  There is concern over the perceived pressure on the smaller voluntary groups to either "conform" or "close". For these groups the majority of which are non-profit making, possibly relying in small grant aid from the Local Authority, their existence is about providing a service which enables parents and carers and children to have a choice. With limited funds and equipment, staff by dedicated volunteers, small local playgrounds offer an alternative to large nursery classes and schools.

Learning progress

  3.14  Parents/carers of pre-school children who also have a special or additional need face considerably more challenges and difficulties than the parents of a non-disabled child.

  3.15  The most common route for a child into education is via parent/toddler group, playgroup, nursery class, and finally school. This is often not an option for a disabled child. Ignorance and fear of inexperienced workers can block a child's passage into school as much as the hospital, physio, speech and occupational therapy appointments that need to be kept. This disruption can mean that even the brightest child does not progress in the recognised way. The LEYC believes that the DfEE has not sufficiently recognised this problem.

  3.16  Disabled children need individual learning goals. They also need good Early Years workers who are experienced in devising individual learning programmes and can develop these. Using a baseline assessment format as the starting point, and taking the child's stage and level of development into consideration, means that evidence of all the child's progress can be recorded.

Statementing

  3.17  It is important that children have access to appropriate and timely provision whether or not they have a Statement of Special Educational Needs.[19]

  3.18  With a limited choice of providers it means that some disabled children do not access any form of play and learning environment until their statement of educational needs is complete. For the fortunate ones this may happen when they are as young as three, but LEYC's experience is that many children are not afforded this luxury.

  3.19  LEYC currently has a waiting list of eleven disabled children aged between 13 months to four years. To bring any of these children in, other children need to move on. Of the 16 three and four year olds currently on register 11 are disabled children who are awaiting statements. All of these children have been referred to the LEA, but with a depleted and over worked educational psychology department the children are waiting considerably longer than the recommended time as stated in the Code of Practice.

  3.20  These children can neither move into a mainstream or specialist nursery without their statements.

CASE STUDIES

  3.21  The children who attend LEYC are fortunate. It offers an environment that empowers children by providing choices and promoting independence. There, it is recognised that all children are individuals and that their needs are different.

  3.22  Its dedicated staff are experienced in working with children from a variety of backgrounds, often with very complex needs. They recognise that children are children first. Without a stable environment that nurtures and stimulates, children of any age cannot learn.

  3.23  Unfortunately not all disabled children are as fortunate. Far too many miss out on these critical early years because not enough thought has been given to the rights of the disabled child. Authorities use the "non-statutory" provision as a means of escape. Concerns exist that this could be an argument for the lowering of the formal school age. And some regard this as the wrong way to address the issue. Quality, choice and access of provision should not relate to whether or not it is a legal requirement of a local authority to provide.

  3.24  The following examples provided by the Liverpool Early Years Centre show how disabled pre-school children are disadvantaged by the current procedures.

CASE STUDY 1

  S.—born January 1995

  Recently moved into the area from abroad. Formal request for statutory assessment 15 June 1999.

  To date (January 2000) the final statement is not complete and no offer of an appropriate school has been made. (Recommended timescale for this: 26 weeks).

  If S. had not attended the LEYC there would have been a considerable lack of continuity and support for her and her family.

  S.'s parents could not just enrol her in their local primary school.

  The local playgroups did not feel confident in their ability to meet S.'s needs, also she would not have been with her age/ability related peers.

CASE STUDY 2

  C.—born April 1997

  C. has a rare syndrome causing significant respiratory problems. She has a tracheotomy.

  The LEYC arranged with the Local Authority, on the parents' behalf, an additional worker who was trained and confident in the management of C.'s condition.

  This enabled her to attend her local playgroup as her older siblings had done. It was not therefore necessary for her to be transported out of the area to attend the LEYC nursery.

  This arrangement took nine months to arrange and was funded through the Social Services Department.

4.  CONDUCTIVE EDUCATION

  4.1  As one of the options available for meeting the needs of children with cp and their families, Scope has been supporting the development of Conductive Education. Originating from the work of Andras Peto in Budapest, Hungary, almost 50 years ago, Conductive Education is a system of learning appropriate for people with neurological disorders such as cerebral palsy. It is a learning process and not, as has been described, treatment, therapy or exercises. It takes a holistic approach and aims to teach individuals skills which are needed to meet the challenges of everyday life.

  4.2  As part of developing this option, Scope in partnership with Budapest set up Peto (UK) in London in 1992, to provide assessments and follow-up courses for families of children with cp aged 0-14 years. It also works in partnership with Keele University and Budapest to provide training for teacher/conductors at Keele, and has pioneered a "Schools for Parents Network" in England and Wales, with now almost 40 Schools for Parents. Within its own direct services Scope currently maintains two special schools that offer Conductive Education (Ingfield Manor in Sussex, and Rutland House in Nottingham).

Scope

January 2000

17   From exclusion to inclusion, a report of the Disability Rights Task Force on civil rights for disabled people. December 1999, pp53-54. Back

18   This section is based on an article by Lindsay Brewis, a Scope Education Officer (1999) "Including the child with cerebral palsy", Practical pre-school, Issue 16. Back

19   In 1999, the number of under-fives with Statements was more than 8,500 (DfEE News Release 186/99 28 April 1999). Back