Providing medical advice to support children with special educational ...

Symposium: special needs

Providing medical advice to support children with special educational needs

Definition of special educational needs (Code of Practice, 2001)2 Children have special educational needs if they have a learning difficulty that calls for special educational provision to be made for them.

Valerie Harpin

Children have a learning difficulty if they: ( a) have a significantly greater difficulty in learning than the majority of children of the same age (b) have a disability that prevents or hinders them from making use of educational facilities of a kind generally provided for children of the same age in schools within the area of the local education authority (c) are under compulsory school age and fall within the definition at (a) or (b) above or would so do if special educational provision was not made for them.

Abstract The academic and social lives of children in school can be significantly affected by their Health needs. This article discusses the ways in which paediatricians can work with education services to support children and young people with Special Educational needs. Paediatricians may be involved in directly advising schools, writing formal advice for education departments and joining in relevant planned reviews. Partnership with parents and the involvement of children and young people themselves is vital. Advice should cover all areas of the child’s health relevant to the child’s success and integration in school and should always be understandable to both the education staff and the family.

Table 1

needs and raising expectations and for some children and young people – especially those with physical disability but good cognition – this has been extremely positive. It has also had the beneficial added effect of helping mainstream children understand and establish friendships with children with disabilities. There are still however, some children, most commonly those with profound and multiple disability or challenging behaviour, for whom this laudable aim has proved a negative aspiration and placement in an appropriate specialist provision has provided the optimal outcome. Some available outcome measures are discussed in a helpful review by Lindsay.3 The 2001 Code of Practice also contains specific sections on working in partnership with parents and with other agencies and also details the responsibility to facilitate the involvement of the child or young person themselves to the appropriate level for their age and ability (see Table 2). There is an expressed need to identify children with SEN as soon as possible. The duty of the health services to inform the parents and the local education authority (LEA) as soon as they believe that a child will have SEN is reiterated. The Code also importantly, states that speedy access to LEA support services (e.g. Autism Support Team) for one off or occasional advice on strategies or equipment or staff training may mean that a child is able to progress well without further action at that time. Additional guidance is available in the ‘SEN Toolkit’.4 Across the UK, parents and professionals are trying to work out, together, the optimal educational placement both academically and socially for children with an increasingly complex range of special needs. In this article, ways in which a paediatrician may support families and education services in this task are considered.

Keywords education; medical advice; special educational needs

Introduction In 2007, in the UK, most children aged 5–16 years spend around 6.5 hours a day, 5 days a week, and 39 weeks a year in school. Prior to 1970, however, not all children were even deemed educable. Children with severe and profound needs were considered ‘ineducable’ and they spent their time at home or in institutional care. Since 1970, it has been considered the right of every child to attend school. Initially many children were enrolled in special facilities, for example, for physically disabled, delicate, those with sensory impairment etc. The Warnock Report (1978)1 suggested that children should not be categorised in this way but should be recognised as having ‘special educational needs’ (SEN) if they had significantly greater difficulty in learning than most children of their age. A current definition of what constitutes SEN is shown in Table 1. The 1993 Education Act consolidated previous Acts and introduced the concept that the Secretary of State should issue and when appropriate revise, a Code of Practice giving practical advice to all those involved in supporting children and young people with special educational needs. The most recent Code of Practice (2001)2 is a readable document which I would advise all those involved in this process to refer to. It is downloadable from the Department for Children, Schools and Families website. This recent guidance gives a stronger right for children with SEN to be educated in a mainstream school. This is seen as promoting a higher standard of education for children with special Q3

The designated doctor for education The Code of Practice sets out the duties of a designated doctor (see Table 3).2 The role is most commonly undertaken by a community or neurodisability paediatrician. One of the roles of this individual is to support other health professionals who are being asked to provide advice to schools or local authorities, so it is always useful to know who holds this position in your district.

Valerie Harpin MB BChir FRCPCH MD is a Consultant Paediatrician at Ryegate Children’s Centre, Sheffield, UK. Q1

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© 2007 Published by Elsevier Ltd.


Fundamental principles from the Code of Practice 20012

The role of the designated doctor (Code of Practice, 2001)2

• A child with special educational needs (SEN) should have their needs met • The SEN of children will normally be met in mainstream settings • The views of the child should be sought and taken into account • Parents have a vital role to play • Children with SEN should be offered a full access to a broad, balanced and relevant education • Agencies should work in partnership to support children and families

At the strategic level, the designated medical officer should check that the health authority have arrangements for ensuring that the trusts and GPs providing child health services: • inform local education authorities (LEAs) of children who they think may have special educational needs (SEN) • provide medical advice to LEAs for the assessment of children within the statutory time limits • consider, with LEAs and with regard to available resources, the health services’ contribution to the non-educational provision to be specified in a statement. At the operational level, the designated medical officer should: • ensure that all schools have a contact (usually the school health service) for seeking medical advice on children who may have SEN • provide a resource to other health service staff – for example, GPs and therapists – who require assistance in preparing reports on the medical history and health needs of children for schools and LEAs • coordinate the health services’ advice for a statutory assessment • participate in multi-agency meetings on assessments and making statements • coordinate the provision to be made by the health services for a child with SEN when, as may be the case with therapy and nursing services, either a health authority or primary care group may be responsible for the purchasing of these services • consider how the powers in the Health Act 1999, allowing pooling of budgets and integration of commissioning or providing functions between the NHS and local authorities, can best support services for children with SEN.

Table 2

Special educational needs coordinator If you feel it is important to liaise with a school about the health problems of one of your patients, the most appropriate person to contact is the school special educational needs coordinator (SENCO). This teacher should know all children in the school with SEN and also be aware of support the school or LEA can provide.

Paediatric involvement Initial advice A paediatrician who already knows a child may be able to offer support and advice that enables a child to integrate into a local mainstream classroom with minor adjustment or training. This might include advice around toilet facilities, medication, or specific support for children with vision or hearing impairment. It may also include advice on handling acute medical problems such as asthma attacks, possible anaphylaxis or seizures. Often this will involve liaison with education services, for example, for sensory impairment or with therapists such as physiotherapists over mobility aids or occupational therapists around needs such as handrails or tilted work surfaces. Specialist nurses – such as for epilepsy or continence services – may have a vital role in making children welcome and safe in educational settings. Teacher training cannot include knowledge of all health issues and providing teachers with relevant information empowers them in their role in supporting the child. Advice around support for children with difficulties such as attention deficit hyperactivity disorder, developmental coordination disorder or mild autism spectrum disorder, especially at times of diagnosis or transition – for example from nursery to school or primary to secondary placement – may also be very helpful to children, families, teachers and other pupils.

Table 3

effective. All of the above involvement would be at the school ‘Action Plus’ stage (see Table 4). When a child is not able to achieve appropriate progress for their ability despite maximal possible school support, application for a multi-professional assessment of educational need should be considered. Multi-professional assessment of educational need This process is initiated at different points and for different groups of children in different local authorities. This should reflect the amount of SEN support schools can access without resorting to multi-professional assessment. The need for an assessment of educational need may be raised by the child’s school or nursery, by a parent or by another agency, such as an involved health professional. The school or nursery must put forward documentation of the child’s progress and the degree of support provided by the school to a SEN panel in order to begin the process. Sometimes a medical report may be crucial to progress this (see Table 5).

What next? Community paediatricians and paediatricians with expertise in neurodisability may usefully be involved in school review meetings considering evolving needs and monitoring progress. Most busy paediatricians need to prioritise attendance as going to every school review would be impossible in any job plan. Sometimes, prior discussion by phone or written input may be equally


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Stages of support for a child/young person with special educational needs

Evidence for deciding whether to make a statutory assessment

School action When a class teacher or the special educational needs (SEN) coordinator identifies a child with SEN the class teacher should provide interventions that are additional to or different from those provided as part of the school’s usual differentiated curriculum offer and strategies.

In considering whether a statutory assessment is necessary, local education authorities should pay particular attention to: • evidence that the school has responded appropriately to the requirements of the National Curriculum, especially the section entitled ‘Inclusion: Providing effective learning opportunities for all children’ • evidence provided by the child’s school, parents and other professionals where they have been involved with the child, as to the nature, extent and cause of the child’s learning difficulties • evidence of action already taken by the child’s school to meet and overcome those difficulties • evidence of the rate and style of the child’s progress • evidence that where some progress has been made, it has only been as the result of much additional effort and instruction at a sustained level not usually commensurate with provision through Action Plus.

School Action Plus At ‘School Action Plus’ external support services, both those provided by the local education authority and by outside agencies, will usually see the child – in school if that is appropriate and practicable – so that they can advise teachers on fresh targets and accompanying strategies, provide more specialist assessments that can: inform planning and the measurement of a pupil’s progress; give advice on the use of new or specialist strategies or materials; and in some cases provide support for particular activities. The kinds of advice and support available to schools will vary according to local policies.

Table 5

Multi-professional assessment This may lead to a provision of statement of educational need or a note in lieu detailing the provision in school.

feel comfortable with. Clearly this will vary from family to family and may also be influenced by the medical issues. Confidentiality is vital to consider. When taking medical histories we, rightly, collect a great deal of sensitive information about the child and about their family. Although it may be easier for us to just ‘include everything’ or even to use a letter previously dictated for the child’s GP, such an approach risks including sensitive and irrelevant information, which will embarrass and anger parents and potentially stigmatise children unnecessarily. We need to ensure that all information included is relevant to the child’s ability to learn, to access the academic curriculum, to enjoy the social aspects of school and to be safe in school and on outings. It is helpful to use a checklist or aide memoire to ensure that all relevant areas are considered. Table 9 shows areas of a child’s functioning that may be relevant to their ability to access the curriculum. When writing a report you should consider each area and decide whether the child has a difficulty in this area that should be included. Using headings such as these in the report helps the administration staff and others in education services to access the relevant information. Many children/young people about whom advice is needed are known to a number of health professionals – for example, speech and language therapist, physiotherapist, child and adolescent psychiatrist, orthopaedic surgeon, ENT surgeon, geneticist, etc. Some of these professionals, for example, speech and language therapists may wish to write their own advice to submit to the process, others may wish the paediatrician to include issues relevant to their input. Local practice may vary and we all need to know what happens where we work to avoid duplication or, worse, omission. Every medical advice you write will, and should, be different but below are a few case vignettes to help you think about what to include and what should be left out. The cases are short and as a result much information that you would like and usually find out is missing but the aim is to help you work out how you would go about providing useful advice. Use the aide memoire

Table 4

There are no ‘hard and fast’ categories of SEN; each child is recognised as being unique. However, it is helpful to consider needs in one or more of the following areas: • communication and interaction • cognition and learning • behaviour, emotional and social development • sensory and/or physical. Some considerations for each of these areas are shown in Table 6. The timescales in the process are shown in Figure 1. These timescales can be tight for busy paediatricians and therapists but all children deserve prompt consideration. Some circumstances extend timescales. These are listed in Table 7. They should be seen as unavoidable events rather than an excuse for delay. Writing reports The aim of the report from health services is to inform everyone involved on how the child’s health needs affect their access to the educational curriculum. It is always more effective if you are writing a report about a child you know well but sometimes you may have met the child/young person only once or even not at all (if reports are written using medical notes). A number of general principles apply (see Table 8). Remember that the report will be seen by the child’s parents or carers. It is vital to ensure that they are aware of any medical terms you use in the report and any issues you raise, for example possible future needs. No parent should ever find out something about their child for the first time in a medical advice! It is often appropriate to use medical terms but also to include explanations in ‘plain English’. It is also important to ensure that reports are written in a way that parents and teachers can understand and


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Special educational needs Communication and interaction For example, children and young people with speech and language delay, impairments or disorders, specific learning difficulties, such as dyslexia and dyspraxia, hearing impairment, autistic spectrum disorder; children and young people with moderate, severe or profound learning difficulties; children with permanent sensory or physical impairment. These children may require some, or all, of the following: • flexible teaching arrangements • help in acquiring, comprehending and using language • help in articulation • help in acquiring literacy skills • help in using augmentative and alternative means of communication • help to use different means of communication confidently and competently for a range of purposes, including formal situations • help in organising and coordinating oral and written language. Cognition and learning For example, children with moderate, severe or profound learning difficulties or specific learning difficulties, such as dyslexia or dyspraxia. These children may require some, or all, of the following: • flexible teaching arrangements • help with processing language, memory and reasoning skills • help and support in acquiring literacy skills • help in organising and coordinating spoken and written English to aid cognition • help with sequencing and organisational skills • help with problem-solving and developing concepts • programmes to aid improvement of fine and motor competencies • support in the use of technical terms and abstract ideas • help in understanding ideas, concepts and experiences when information cannot be gained through first-hand sensory or physical experiences. Behaviour, emotional and social development For example, children and young people who are withdrawn or isolated, disruptive and disturbing, hyperactive and lack concentration; those with immature social skills; and those presenting challenging behaviours arising from other complex special needs, may require some, or all, of the following: • flexible teaching arrangements • help with development of social competence and emotional maturity • help in adjusting to school expectations and routines • help in acquiring the skills of positive interaction with peers and adults • specialised behavioural and cognitive approaches • re-channelling or re-focusing to diminish repetitive and self-injurious behaviours • provision of class and school systems that control or censure negative or difficult behaviours and encourage positive behaviour • provision of a safe and supportive environment. Sensory and/or physical needs There is a wide spectrum of sensory, multi-sensory and physical difficulties. The sensory range extends from profound and permanent deafness or visual impairment through to lesser levels of loss, which may only be temporary. Physical impairments may arise from physical, neurological or metabolic causes; a few children will have multi-sensory difficulties some with associated physical difficulties. Many of these children and young people will require some of the following: • flexible teaching arrangements • appropriate seating, acoustic conditioning and lighting • adaptations to the physical environment of the school • adaptations to school policies and procedures • access to alternative or augmented forms of communication • provision of tactile and kinaesthetic materials • access to different amplification systems • access to low vision aids • access in all areas of the curriculum through specialist aids, equipment or furniture • regular and frequent access to specialist support. Medical conditions A medical diagnosis or a disability does not necessarily imply special educational needs. It may not be necessary for a child or young person with any particular diagnosis or medical condition to have a statement, or to need any form of additional educational provision at any phase of education. It is the child’s educational needs rather than a medical diagnosis that must be considered. Table 6


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(Table 9) in each case and write down/highlight the information you would include in medical advice and the information that should not be included.

Feeding is a major problem. Kelly’s mother spends over an hour giving each meal despite optimal positioning and feeding methods and Kelly’s weight gain is still very poor. Following careful assessment and discussion with the family, a gastrostomy is inserted. This is successful and weight gain and nutrition improve. Kelly is a delightful and social child. However, communication is difficult for her. She makes her feelings known by smiles, laughs and crying. She can point with her left hand to symbols given time and can eye-point accurately. Formal assessment of Kelly’s cognitive ability is difficult (most usual testing procedures involve dexterity and speed, which Kelly does not have). She is interactive and can demonstrate some good understanding. At the age of 3.5 years, Kelly attends a nursery at a special school 3 miles from her home and has sessions at her local playgroup with support from the ‘early years’ service. She is not able to sit without support and is dependent for all self care. Think about the information needed in her medical report for assessment for school placement.

Case reports Kelly Kelly was born prematurely at 25 weeks gestation. Her mother is a single parent aged 17 years with a history of depression and alcohol abuse. Kelly’s maternal grandmother has epilepsy. Kelly survived a stormy neonatal course but sustained a significant ventricular haemorrhage and follow-up confirmed that Kelly has cerebral palsy affecting all four limbs. She has input from physiotherapy and occupational therapy to optimise gross and fine motor skills. She is supported by speech and language therapy to help with feeding difficulties and with communication and she is seen regularly by preschool teachers. Hearing is felt to be normal using brainstem evoked responses. Testing vision is difficult at first. Kelly has an obvious right convergent squint. She is also very short-sighted due to retinopathy of prematurity. She has glasses but dislikes wearing them and has broken her first two pairs! At the age of 2 years 4 months, Kelly has her first afebrile seizure that lasts about 10 minutes and she is admitted to hospital overnight. She has two further seizures and is commenced on carbamazepine and parents are given buccal midazolam to use for a seizure of over 5 minutes length.

Martin Martin is 4 years old. Speech and language therapists have been concerned about Martin’s poor language development and his nursery have been monitoring his progress and feel he will benefit from additional support entering mainstream primary school. They have collected information about Martin’s progress and the input nursery have provided and referred Martin to the educational psychologist. Martin presented to paediatric services due to the concerns about slow learning. Following history and examination, one possible diagnosis was Duchene muscular dystrophy and this was confirmed by investigations. Martin’s parents have a younger son aged 6 months and an older daughter aged 7 years who attends the school they wish Martin to attend. They are only just beginning to understand the meaning of the diagnosis. They are adamant that they do not want Martin or his sister to know about the prognosis at this stage and yet they feel very anxious about Martin and wonder if he should attend some kind of special school. The clock is ticking and you have 6 weeks to provide medical advice to the education department. How would you proceed?

LEA receive request 6

6 weeks

Decision

to access

not to access LEA seek advice

6 10

To make statement

Not to make statement

Alex Alex is 9 years old. He is a bright child who started well in school but over time more difficulties have emerged. Alex’s behaviour is challenging. He will correct the teacher, tell tales on other children, hit or bite when he cannot have his own way at break time or if he is not allowed to sit with a particular

Proposed statement (notify parent of decision)

Notify parent of decision not to make statement (note in lieu)

Reasons that may lead to a ‘Stop the Clock’ (Code of Practice, 2001)2

Advice received Decision

16 weeks 2 18 weeks

8

25 weeks

• Exceptional personal circumstances affecting the child or parent in the 6-week period • The child or parent are absent from the area for at least 4 of the 6 weeks • The child fails to attend an offered appointment • The health authority has no prior knowledge of the child

Final statement

Figure 1 Timescales in the statutory assessment (Code of Practice 2001).2 LEA: local education authority.


Table 7

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own input. Alongside the formal input to the statementing process, the health service professionals supporting the child should also provide further written information to the school and (previously) to the family about the needs of children with specific diagnoses. Often very helpful information can be obtained from the ‘Contact a Family’ website (www.contactafamily.org.uk). Information on this website is constantly reviewed and updated. If you use other websites, always check the source of the information and the date it was last updated.

Some general principles in writing medical advice • Always give medical diagnoses but explain in lay terms • Ensure parents are already aware of any terms you use • Include all information that may affect learning and explain why • Omit unnecessary information including medical details about other family members • Be concise but cover all relevant points

Feedback from the cases

Table 8

Kelly • Kelly is known to a number of therapy colleagues. They will all provide relevant information to help Kelly in school. • You must check that Kelly’s mother understands the medical terms you use and you should include explanations of all medical terms in non-medical language. • Begin with all the diagnoses in a problem list form. • List all medication and indicate which if any will need to be given in school. • Go through all areas of function in the aide memoire and indicate Kelly’s current ability. • Mention all the equipment Kelly needs. • Mention specifically action to be taken in school if Kelly has a fit. • You do not need here to mention any information about Kelly’s mother or grandmother.

child. Other children in the class do not find it easy to work or play with Alex. Alex has a particular interest in the Romans and dinosaurs and will talk about his interests incessantly when meant to be working on other topics. Alex has been threatened with exclusion following his latest violent outburst when he threw a chair that hit a supply teacher. Alex’s teacher and the school SENCO have met with his parents and discussed their concerns. With the parents’ consent a referral is made to the educational psychologist and parents go to their GP to request referral to the Child Development Centre for an assessment of Alex’s social and communication skills. Following a full diagnostic assessment, Alex is felt to fulfil the criteria for Asperger’s syndrome. What input do the school need? Teresa Teresa is 10 years old. She is in Year 6 at her local primary school and is predicted to get level 5 in all her SATS tests. On 23rd December, she is a passenger in her father’s car when the car is hit by another vehicle that skids on ice. Teresa sustains a severe head injury and fractured ribs and is in the intensive care unit over Christmas. She makes a really positive recovery. After 10 weeks she is considered ready to return to school. Think about the advice the school need.

Martin Once again use the aide memoire to write/highlight the information needed for the advice. More importantly here is how the advice is handled. Parents need to be leading the process and it may be important to ‘stop the clock’. It is vital to share the diagnostic information with all therapists and the educational psychologist. If you are not the paediatrician involved in ongoing management, you clearly need to liaise with that doctor and his/her team. The confidentiality of the diagnosis in school is important especially as Martin’s family have not yet told their other children the meaning of this. Advice needs to be reviewed frequently in line with Martin’s needs and his parent’s views. Written material on muscular dystrophy should be provided to school with parental consent. The Muscular Dystrophy Society and ‘Contact a Family’ provide suitable literature.

Your advice is needed firstly to help the education services decide on the kind of support the child needs and should also help the school use that support and also optimise the school’s

Aide memoire for writing medical advice Consider the following: • diagnoses/problem list • particular strengths • medication and any necessary use in school • communication skills • learning ability • gross motor ability and help and equipment needed • fine motor skills and help and equipment needed • self-care skills and help needed (e.g. feeding, toileting, dressing) • emotional and behavioural difficulties and helpful strategies (if appropriate)

Alex The first role of this medical advice is to confirm the diagnosis of Asperger’s syndrome and give an indication of what difficulties this may cause Alex in school. Alex will need support from specialist education services. Support for Alex may need to be directed to unstructured times such as break times and lunch, and to facilitating group work and peer relationships. Teresa Some areas may have specific support services for children who have sustained a head injury. Teresa does not appear to have significant residual physical needs but this should be monitored.

Table 9


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For Teresa, ongoing needs are likely to be related to learning and behaviour. After a head injury, previously learnt skills may be preserved and only by monitoring learning progress over the following 6–12 months will the extent of learning needs be apparent. Preserving self-esteem and friendships needs a particular mention here.

The GP has a special role in coordinating adult healthcare and communication with the GP needs to be clear, full and up-to-date. There is always a danger that GPs are not the doctor families of disabled children turn to. Paediatricians can take over the primary care role even if they do not mean to. Throughout childhood communication with the relevant GP team is needed to maintain primary care involvement. This will facilitate smooth transition to adult care.

Ongoing reviews Conclusions

A statement of educational need is reviewed at least annually. It is not necessary for the paediatrician to attend all these reviews but if the health needs have changed at all, attendance may be helpful and a report should definitely be written to update the health section of a statement. Telephone or e-mail contacts can also be really helpful to the child and the teacher.

Supporting children with SEN is an important paediatric role. This may vary from one-off advice to a school to detailed discussion with others involved, writing a formal medical advice and being involved in ongoing reviews. Working with schools and other education professionals, needs knowledge of each other’s roles and mutual respect. Paediatric input can greatly help children and improve their quality of life in school. ◆

Transitional reviews Times of transition from one school to another are always important and may require further input. The review of a statement of educational need at Year 9 is, however, considered of special significance as it should mark the initiation of planning for adult life for this young person. Young people with significant health needs should be well known to services by this age. The important need is to begin to involve the health professionals that the young person will need as an adult, so that they and their family can feel secure in knowing and understanding the team who will help in the future. The health input will also be vital in some cases to planning adult accommodation, career or day services. Once again the health services advice may significantly affect the placements that the young person is offered and the funding that they are allocated, so it is really important to collaborate effectively and honestly. The Code of Practice (2001)2 emphasises the need to involve the child/young person in the process at all stages to the level appropriate for them. It is especially important to review this at this point. You should consider how you involve the young person in medical consultations and how you share your written reports with them. Do you know that they are aware of the medical terms used about them, the causes of their difficulties if known and the future prognosis? You should always be aware of the child/young person’s chosen communication methods and the level of their understanding.

References 1 Warnock M. Committee of Enquiry into the Education of Handicapped Children and Young People. Department of Education and Science, 1978. 2 Department of Children, Schools and Families. The Special Educational Needs Code of Practice. (DCSF 0581/2001). www. teachernet.gov.uk/doc/3724/SENCodeOfPractice.pdf, November, 2001. 3 Lindsay G. Educational psychology and the effectiveness of inclusive education/mainstreaming. Br J Educ Psychol 2007; 77: 1–24. 4 Department of Children, Schools and Families. Special Educational Needs Toolkit. (DCSF 558/2001). www.publications.teachernet.gov.uk/ default.aspx?PageFunction=productdetails&;PageMode=publications& ProductId=DfES+0558+2001, 2001. Q4

Practice points • Communication with families throughout is vital • The health professionals involved should ensure that all discussions and reports are in easily understandable language with no unexplained medical jargon • Only relevant information should be included • When writing medical advice this should be completed within 6 weeks whenever possible • Providing clear, comprehensive and timely advice to schools, families and Education Authorities will help to optimise support for children

School leaver review In the young person’s last year in full-time education, it is important to ensure that all the young person’s health needs in adult life have been documented and shared with the young person (where possible), the family and all who will be involved in the future.


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