Supporting pupils with special health needs in mainstream schools

Jane Lightfoot and Suzanne Wright

Social Policy Research Unit

University of York

Paper presented at the British Educational Research Association Annual Conference

(September 2-5 1999: University of Sussex)

Background

mainstream schools are increasingly a setting for health-related support for pupils with a chronic illness or physical disability

existing research suggests that this group of pupils are ‘at risk’ and that teachers have difficulties in supporting them

what policy guidance underpins such support? how is it interpreted in practice?

This presentation focuses on policy and practice in supporting pupils in mainstream schools who have ‘special health needs’ : by this we mean needs arising from a chronic illness of physical disablility. This is an important issue as these schools are increasingly a setting for health -related support: a growing number of pupils in mainstream schools have an illness or a disability, owing both to education policy for ‘inclusion’ and to advances in medical treatment (Botting and Crawley, 1995). Existing research suggests that this group of pupils are ‘at risk’ in that, on average, they perform less well academically and have higher rates of psychosocial problems than their peers (Wallander and Varni, 1998). A higher absence rate and limits on particpating in school life are factors behind this discrepancy (Fowler et al., 1985; Nettles, 1994). Research also shows that teachers have difficulties in supporting these pupils, for example in obtaining appropriate health information and advice from NHS staff (Bradbury and Smith, 1983; Eiser and Town, 1987) - hence the importance of good inter-agency working.

In SPRU we carried out a two year research study between 1996 and 1998 investigating the support needs of mainstream school pupils with an illness or a disability. I’m going to use data from this study to take a critical look at policies underpinning support for this group of pupils; how they are interpreted in practice; and ways in which policy guidance - some of which is currently under review - could be strengthened.

The SPRU study

focused on NHS support

included a range of health conditions

perspectives of pupils, parents and teachers

carried out in 3 LEAs:

33 pupils (aged 11-16)

58 parents

35 teachers

Just a few details about our study, for context.

The research was funded by the NHS Executive, with the overall aim of improving NHS support.

Where previous studies had focused on single health conditions, we wanted to include a range so as to draw out more general themes.

There has been relatively little research in this field, with the views of pupils themselves on their support needs a particular gap.

Tthe study was exploratory in character and qualitative methods seemed most appropriate. We collected data in 3 LEA areas: from 33 pupils aged 11 to 16 (via semi-structured interview); from 58 parents of pupils of all ages (via focus groups); and from 35 primary and secondary school teachers (also via focus groups).

Where is support needed?

absence

exclusion

peer relationships

emotional support

teachers who ‘understand’

medical care

There is only time today to highlight our key findings about support needs, although we have published the results, if people are interested (Lightfoot et al., 1998 and 1999; Mukherjee et al., forthcoming).

The importance of school to the pupils was highlighted by the efforts they made to attend and to take part in school life. Although they were actively managing their condition at school in a number of ways, there were several areas where they encountered difficulties and valued support from others: minimising the impact of absence (eg sending work home); minimising exclusion from aspects of school life (eg access to classrooms; adapting social activities; going on school trips); easing difficulties with peers (eg intervening when bullied); emotional support (someone to talk to when worried); and, crucially for these pupils, having teachers who ‘understand’, that is who know about the health condition, understand its impact on school life and make any special arrangements needed. Parents and teachers reported similar concerns and also pointed to problems with medical care: both practical problems, such as space for private treatment; and problems of principle, such as lack of clarity over responsibilities (eg between health and education for special equipment).

Key difficulties

wide variation in support

lack of defined responsibility in school

poor communication of pupils’ needs within and between schools

poor communication between NHS and school staff

Wide variation was reported in the extent to which needs were being met. Support appeared idiosyncratic rather than systematic, a matter of luck according to the ethos of individual schools, and the attitudes of individual teachers and NHS staff. Although examples of good practice were reported, where pupils did not have acces to good support, they experienced difficulties, for example: not being believed by teachers that they had symptoms; being unnecessarily excluded from some activities or inappropritaely forced to take part in others (for example PE).

Our findings suggest a number of difficulties in meeting pupils’ health-related needs systematically, in particular:

- a lack of defined responsibility in school for pupils with special health needs

- poor communication of pupils’ needs within and between schools

- poor communication between health and school staff.

Where do these children fit in policies designed to support pupils at school?

Where do pupils ‘fit’ into policy?

Code of Practice on the Identification and Assessment of Special Educational Needs (DfE/ Welsh Office, 1994)

Supporting Pupils with Medical Needs (DfEE/ DoH, 1996)

Child Health in the Community

(DoH, 1996)

This group of children straddles the policy boundary between education and health: there is no single policy document which sets out to identify and address the range of their needs. However, this group of pupils does feature in guidance in both education and health.

There are three key guidance documents (see slide). I’ll briefly describe the main points of each and then draw out our practice evidence.

The Code of Practice was issued under the 1993 Education Act. Under the Code, ‘special educational needs’ means that a pupil has a learning difficulty which calls for educational provision additional to or different from that generally available locally (1993 Act: section 156). The Code argues that there is a continuum of severity of SEN: pupils with SEN are allocated to one of 5 stages on a school’s SEN Register. Stage 3 upwards signals a need for outside specialist support (eg from the NHS). At Stage 5, a statutory assessment by the LEA and other relevant agenices - including the NHS - results in a formal Statement of SEN specifying additional resources to support the pupil at school. In each school a designated teacher - the SEN Co-rodinator (SENCO) - is responsible for day to day operation of the school’s SEN policy, including maintenance of the Register, and for liaison with colleagues, parents and other agencies.

The SEN Code of Practice

‘Children with identified medical needs will not necessarily have an associated learning difficulty, but the consequences of their illness or disability...may lead to future difficulties if there is not close co-operation between the school, the relevant child health services, and parents.’

(para 2.49)

Where do pupils with an illness or disability fit into the Code? Despite its focus on pupils with special needs arising from learning difficulties, the legal definition of SEN includes children with a disability ‘which prevents or hinders them from making use of eduactional facilities’ (1996 Education Act: section 312). The Code itself draws attention to the potential impact which a child’s medical condition may have for his or her education and urges collaboration between those who have expert knowledge about the child (see quote).

Under the Code, each health authority must have a ‘designated meadical officer’ to lead the local NHS contribution to assessment of pupils with SEN. And all schools should have a named contact (usually the school doctor) for seeking medical advice on pupils who may have SEN (para 2.47).

How is the Code interpreted in practice for pupils with an illness or disability?

The SEN Code of Practice

focus on learning difficulties: teachers unclear how to interpret for ill or disabled pupils

equity issues:

identifying responsibility in school

systems for communication: within school; between teachers and NHS staff

In our research, teachers reported that the focus of the Code on learning difficulties meant that its application to ill or disabled pupils was unclear. Pupils in the study who had a Statement of SEN had constant and clear-cut needs for additional resources, for example a need for personal assistance with mobility, or toileting. Other pupils had needs which teachers found more difficult to relate to the Code’s guidance as to where - or even whether - to place them on the SEN Register: for example, where needs were intermittent (such as support in a medical crisis) or essentially prevetative (such as repeated absence risking the child falling behind with the curriculum). In practice, schools differed as to whether they allocated pupils with special health needs to a stage on the SEN Register: some did, and others did not.

Given the scope for wide interpretation of the Code, teachers expressed concern about equity. From the data, it was clear that, where a pupil with special health needs was on the SEN Register, this brought two types of benefit: first, having a named teacher - the SENCO - with lead responsibility for co-ordinating special arrangements. The second benefit was improved communication: both within school, where the Register acted as a device for raising awareness among staff about pupils’ needs; and between teachers and health professionals (especially for pupils with a Statement where formal service and review arrangements were in place).

The SEN Code of Practice

‘I’m not sure whether or not I’m that responsible person. I think it’s the pastoral side of school...but I do tend to get landed with a lot of stuff. And that’s bad in itself, that I’m not clear as to whether I’m properly reponsible or not.’

(SENCO)

SENCOs found themselves in a difficult position since, although a pupil with health needs (only) and not on the SEN Register was technically outside their remit, in practice they reported taking responsibility for this group of pupils ‘by default’, since colleagues turned to them for advice on pupils with special needs of any kind (see quote).

In turn, SENCOs felt that their colleagues had unrealistic expectations of them. While they saw themselves as ordinary class teachers with an administrative, co-ordinating, role, colleagues mistakenly saw them as having medical knowledge. In reality, SENCOs said they had insufficient non-contact time, training and links with health professionals which would be needed to develop a health-related support role.

Importantly, the SENCO having lead responsibility ‘by default’ for pupils with special health needs also posed problems for pupils themselves. Four young people mentioned that they did not like being expected to turn to the SENCO for emotional support, since they thought SENCOs prioritised pupils with learning difficulties and so took their health-related worries les seriously.

Supporting pupils with medical needs

guidance to tackle a ‘grey’ area in responsibility between staff and parents

the individual health care plan

Turning to the second area of guidance, the growing number of pupils with medical needs in mainsteream schools has exposed a ‘grey area’ as to the responsibilities of school staff at the boundary between education and medical care. In 1996, the DfEE and DoH issued joint guidance aimed at clarifying the legal situation and providing a Guide to Good Practice to help school draw up policies on managing medication and to put in place support systems for pupils.

Under the guidance, although the school’s governing body is usually responsible for support procedures (as part of a health and saefty policy), it is parents who are responsible for their child’s medication: individual members of school staff who administer medication do so on a voluntary basis, it is not a legal duty.

The guidance recommends drawing up a clear protocol in the form of an ‘individual health care plan’ to set out daily care requirements at school and what to do in an emergency. The child, parents, school and NHS staff should be involved in preparing the plan, which should be reviewed annually.

Supporting pupils with medical needs

Problems with the guidance:

poorly disseminated

fails to clarify responsibilities

In practice, our evidence suggests two types of difficulty with the guidance.

First, it appears to have been poorly disseminated. Although issued to LEAs, the guidance was available to schools only on request. Knowledge about the guidance, including the concept of an individual health care plan, was poor among the teachers in our study. Ironically, teachers identified a need for clear protocols for individual pupils along the lines of these plans!

Secondly, in common with a recent House of Commons Select Committee (1997) investigation, we found that the guidance does not appear to have clarified responsibilities for medication. Parents reported school policies as unclear about the respective obligations of staff and parents. Parents who were asked to come into school to deal with medication queried this in principle: what about working parents? Responsibility for the individual health care plan was also unclear as to whether this lay with the school, NHS staff, or with families.

Child Health in the Community

DoH good practice guidance across all child health services

objectives of the school health service include ‘minimising the consequences of illness and disability in children for their education’

a more selective focus for the SHS: including information and advice to schools

The final guidance to mention was published by the DoH in 1996 as a good practice guide for all child health services, including the school health service (SHS).

One objective of the SHS is ‘minimising the consequences of illness and disability in children for their education’ (para 8.1). Inclusion of more disabled pupils in maintream schools is cited in the guidance ( in para 8.5) as one of the factors behind an increasingly selective focus for the SHS; that is a shift away from universal ‘medical inspection’ of all school children in favour of a targeted approach, providing infor mation and advice to schools about individual pupils, and making a contribution to the assessment and support of pupils with SEN and medical problems (para 8.6).

It follows that the guidance sees the SHS as having a key role for this group of pupils.

Child Health in the Community

Reservations about school doctor as key NHS contact:

level of support varies between school doctors

an expert on medical conditions?

lack of knowledge about individual case

delays in receiving information

In practice, we found reservations expressed about this role. All the teachers in the study saw the SHS - and in particular the school doctor - as their key contact with the NHS. Although some teachers had long-standing and good relationships with a school doctor, wide variations in the level of support were reported.

Even where relations were good, in general teachers were not keen to approach the school doctor for advice an information about pupils with an illness or disability. The school doctor was seen as having a particular focus on the learning impications of illness and disablity and not as an expert on medical conditions per se. One parent even cited an example of a school doctor’s knowledge about treatment being out of date. Also, asking the school doctor inevitably meant a delay in receiving advice, since the school doctor would have to ask the child’s lead health professional (typically their consultant) about the individual case. Pupils felt that SHS staff were unlikely to know about how their illness affected them personally. For these reasons, teachers said they would prefer to have direct contact with the child’s consultant.

Child Health in the Community

Teachers’ information needs

specific and wide-ranging, but largely unmet: lack of mechanism for systematic communication between teachers and health professionals

pupils wanted teachers to have health information

all types of respondent wanted health professionals to be more pro-active in passing information to schools

In our study, teachersreported a wide range of needs for specific health-related information and advice with which to support individual pupils. These needs remained largely unmet, owing to the lack of a mechansim for systematic communication between teachers and health professionals caring for individual pupils.

Without exception, the pupils in the study wanted their teachers to have information about their health which would help them to understand their support needs at school. Pupils, parents and teachers all wanted health professionals to be more pro-active in taking responsibility for collating and passing information to schools routinely.