WHAT SUPPORT DO PARENTS WANT FOR THEIR DISABLED CHILD?

Porter J.
UK, Bath, University of Bath

Инклюзивное образование: практика, исследования, методология: Сб. материалов II Международной
научно-практической конференции / Отв. ред. Алехина С. В. М.: МГППУ, 2013

Abstract

Schools in England (as elsewhere in Europe) have a duty to promote equality for disabled people and make reasonable adjustments for disabled children. There is however a degree of uncertainty about how well placed parents are to use the legislation to ensure their child’s needs are addressed. This paper presents data drawn from a national questionnaire designed for schools to use to identify their disabled pupils and examines in detail parental responses to a question on the kinds of support their child finds helpful in offsetting any difficulties they experience. It illustrates the complex and varied nature of the “reasonable adjustments” that are  required and an overriding sense these need to be underpinned by the values of a responsive child centred approach, one that  recognizes that parents’ knowledge and understanding of their child is important. Schools need to have in place the two way communication process that supports them in “knowing” about the visible and invisible challenges that pupils with difficulties and disabilities face in participating in school life.

Introduction

There has been a series of legislative acts in England as elsewhere in Europe designed to safeguard disabled people from discrimination. This rights based approach draws on a social model of disability and makes an important distinction between an impairment and a disability, the latter resulting from the interaction between the person and the environment, putting due emphasis on the barriers and supports that are in place. 

Gaining consistency in identifying disabled pupils is not straightforward. The legislation in the UK defines disability as an impairment or health condition which has gone on for a year or more which has had a substantial (more than minor or trivial) adverse effect on normal day to day activities. This definition therefore goes beyond ascertaining whether the child has a physical or mental health condition.  A pivotal element is the experience of an impairment, its impact on participation in daily life.  The views of parents and children are therefore central to the identification of disability, including the supports and barriers they encounter. Schools will have already formally identified around half of disabled children as they will also have a special educational need (Porter et al 2008), that is they will experience difficulties in learning. However there will also be a group of children with health conditions that impact on classroom life. Many of these may be cyclical with conditions that lead children to be in the grey area of not really ill or very well (Closs 2000). There will also be children whose disability remains largely invisible to schools, including those with mental health difficulties and children who have developed coping strategies that draw attention away from their struggles to participate fully in school life. There is some evidence that disabled children may be vulnerable to underachievement, particularly those who demonstrate early potential for high attainment which is eroded through school absence and ill health (Porter et al. 2008). It is important therefore that schools are aware of children and young people’s physical or mental health conditions, the challenges they face in school life and what supports and adjustments are particularly helpful.  It is important to adopt a universal approach to ensure that data are collected from all children who are struggling, rather than targeting already identified children.

This paper presents data on the support that parents of children who experience difficulties with school life find helpful. It is drawn from a national questionnaire devised for schools to use to collect data from parents about disability in line with the Disability Discrimination Act 2005 definition, i.e. to identify children with an impairment or health condition which has continued for a year or more and which has a substantial effect on daily life. The survey of disabled children reported here was the first to be developed to provide reliable data for schools and local authorities to report to Government testing new measures of impact and based on earlier developmental work with schools and Local Authorities (Author 2008)

Methods

The research was carried out in two phases between 2007 and 2010. Local Authorities nationwide were invited to nominate between 5-10 schools and in total 123 schools responded. Schools trialled the use of a parent questionnaire to identify the children who met the legislative criteria for disability, namely that they had an impairment or health condition which had gone on for a year or more that had a substantial impact on daily life which was not offset by the use of equipment or aids. Schools in the first phase were asked to survey Reception children  (aged 4-5) and those in years 4 ( 8-9) and 8 (12-13 years) and in the second phase they chose which year groups to target, sending the questionnaire to parents of all children and in some cases opted to send it out to every parent in the school.  The questionnaire comprised mostly closed questions that sought information from parents including whether their child experienced difficulties in aspects of schooling and life in the home; if their child had a physical or mental health condition, impairment or difficulty and if so whether it was longstanding and had persisted for a year or more (or was likely to). Where parents had answered yes they were then invited to state if their child had seen a professional and what diagnosis was given; they were asked about the impact of the condition and the nature of their child’s needs. There was also an open question, (the focus of this paper)  that asked parents about the support that their child found helpful. Full details of the procedures can be found in Porter et al (2008; and 2010).

Sample

Staff from 123 schools distributed the questionnaire to parents of 13,200 pupils of which 5432 (41%) were returned and form the basis of the analysis below. The returns were almost equally divided across boys and girls (51% and 49% respectively) with 94% of the returns from mainstream provision (56% primary and 38% secondary) and 7% from special schools. The children ranged in age from 2-19 years but as figure 1 reveals the schools’ choice of year groups resulted in more 4,8 and 11 year olds being included in the returns.

Insert Figure 1 around here.

Children with an Impairment or Health Condition

Of these returns, 1227 parents indicated that their child had a health condition or impairment- some 23% of the questionnaires returned. However a much smaller proportion of the parents reported that their child experienced a substantial impact on their participation in the activities of daily life- 9% of the returns therefore met the Equality Act criteria.  This is higher than the 6% figure quoted by the Department of Work and Pensions but within the variation of 5-18% cited by Read et al 2007.

Taking the entire group, 17% had a diagnosis of ASD and 14% of asthma, with 8% of children having a visual impairment and 8% a hearing impairment, 5% had ADHD and 4% epilepsy, and 2% cerebral palsy.

What support did parents say their child found helpful?

Parents were asked what support their child found particularly helpful  and 732 parents of children with a health condition or impairment provided comments to this open question., 60% of the sample. A higher proportion of parents who reported a substantial impact made comments- 78%, compared to just 47% of those parents whose child experienced no impact. 

We asked parents about the children’s experiences of participating in both school and home.   As might be expected more children whose health condition had a substantial impact experienced challenges to participation across all settings with 91% experiencing difficulties in the classroom, 81% interacting with peers, 82% participating in other school activities, 93% in the home and 90% outside the home. This compared to the low impact group of children where difficulties with classroom learning were reported by 50% of parents, interaction with other pupils 33%, 31% other school activities, 27% outside the home and 23% inside the home. Moreover this group was likely to experience difficulties only sometimes whereas parents in the high impact group were more likely to respond yes than sometimes in each of the domains of participation.

Turning now to the open question, an iterative process of data coding was adopted. Comments were grouped around eight emergent categories: comments that concerned the organisation for learning, notably reference to 1:1 support or small group learning; staff responses that communicated to the child positive understanding and being generally supportive; access to specialist advice both internal and external to the school; comments that related to the curriculum; mention of aids or equipment; description of particular teaching styles or approaches; aspects of the environment including space and finally reference to particular medical support including diet.

Parental Responses – All children with health condition or Impairment

Organisation for Learning

Looking across all groups, parents most frequently mentioned aspects concerned with the organisation for learning- namely individual support (119 parents ) and the presence of a teaching assistant (32) or less frequently a small group (40). This was reflected in both primary and special school responses but was not a particularly frequent mention amongst parents of pupils in secondary schools. In secondary school parents were more likely to mention having a teaching assistant supporting their child than the benefits of individual teaching or working in small groups. In special schools teaching assistant were much less rarely mentioned, with only 5 parents stating that the presence of a teaching assistant was supportive compared to 53 writing about the importance of 1:1 teaching. Parents sometimes explained why their child found it helpful as these two quotes from secondary schools illustrate:

Kitl has told me he gets help from a class assistant. By having this help Karl is able to understand subject areas which he would otherwise find difficult. This person is also available for Kitl to talk to if he has any other problems, ie. With other pupils.

Parent of a child in secondary school.

She likes smaller groups as they are less noisy and she finds it easier to concentrate.

Parent of a child in secondary school.

And from primary schools:

Support assistant is extremely important ‒ enables/facilitates access to the curriculum, support with communication, equipment, emotional, social support.

Working one to one he finds very helpful, especially if he's with someone he has clicked with…

And from special school:

For Martin  to gain confidence and to understand things, he needs more time and patience in explaining things to him, one to one tuition with no distractions are a must for him to concentrate on the tasks at hand ie homework etc…

It is clear from these quotes that the organisation for learning is also about the relationship with the person and this brings us to our second important theme. 

Attitudes, Understanding and Being Supportive

Just under one in five parents wrote about the importance of staff attitudes towards their child. This was a common theme across all three settings. Patience, understanding and reassurance were particular themes.  They wanted staff to be sympathetic to their child’s difficulties and understanding rather than judgemental.

Аcceptance and allowance for her special needs means that she is more relaxed, happy and confident in the classroom, and this will help her learning.

Parent of a child in primary school.

Help when in difficulty. Not to feel that he is not good enough.

Parent of a child in secondary school.

Elizabeth needs a lot of emotional support and reassurance.

Parent of a child in a special school.

Parents wanted staff to promote confident and raise self esteem and were particularly mindful of the impact when this did not happen.

Elsa gets frustrated if she is not listened to when she has a problem. If people hurry her or get irritated this will exacerbate the situation and she will get upset and aggressive and anxious. General support encouragement and understanding works wonders.

Parent of a child in primary school.

Sometimes find difficult to take part in physical education because he feels tired and drained of energy. When sent a note to school to exclude him he was forced to join in and told "if you are not well enough to do P.E. you should not be at school". The one time he collapsed after P.E. The hospital will be writing to the school.

Parent of a child in secondary school.

A few parents wrote about the importance of the school ethos…

Their school they attend is great. They have never been made to feel any different and have never had any difficulties to overcome. Their teachers have always been very understanding and supportive.

Parent of two children in primary school.

The school understands his limitations and accepts he cannot do rugby, they accept him just to get on with his everyday life and treat him as normal as all others.

Parent of a child in secondary school.

The importance of this category of responses is further emphasized by parents who did not write to explicitly identify support but provided comments to explain their child and their behaviours.

Chris copes mostly very well. It's the unknown or something new or different that can cause him to worry or become stressed. As sleeping is one of his major difficulties he is often exhausted and this can magnify things for him.

Parent of child in secondary school .

Specialist Advice

In addition to the attitudes of staff, unsurprisingly parents also valued specialist advice.  One in four parents of children in special schools and 1 in 6 in primary and 1 in 7 in secondary identified particular types of specialist who they had found particularly helpful. These were a wide-ranging group including Occupational, Physio and Speech Therapists, Consultants, Dieticians and Nurses, Counsellors, Social workers as well as specialist teaching staff.  Speech therapists were the most frequently identified specialist to provide their child with support, especially for parents with children in special schools and primary schools:

He finds speech therapy very helpful because this would help him to talk and express his feelings and making other people understand him…

Parent of a child in special school.

Parents also mentioned speech therapy as support from the past:

Only needed speech therapy when young ‒ discharged ‒ and the support was good. See's opticians every six months due to him having operation when he was 2 yrs old.

Parent of a child in secondary school.

Through intensive speech therapy since the age of 30 months Ciaran's speech has improved dramatically. However he still struggles with some pronunciation and needs time to think and articulate himself. He needs to be allowed to finish his sentences and to let his train of thought be fully voiced, so time and patience are vital. Also an awareness by his classmates of their need to listen would perhaps improve his relationships?

 Parent of a child in primary school.

Parents with children in secondary schools were more likely to mention specialists that provided counselling:

- Just started talking to school counselor.
- Waiting for appointment to see CAMS at (region) Hospital.
- In regular contact with members of staff concerning K panic/anxiety attacks.

Parent of a child in secondary school.

Doctors, Nurses and Paediatricians were also mentioned:

becoming Diabetic has limited Danielle's activities during school sometimes if she has a hypo or feels unwell. Danielle has been a Type 1 Diabetic for 3 years. She finds helpful support from her family, friends, teachers, diabetic nurses, dietician and consultant paediatrician.

Parent of a child in primary school.

Specialist teachers were much more rarely mentioned, with only 7 parents of children in primary schools, 2 in secondary and 8 in special indicating that they found these professionals helpful. Even rare were references to psychologists or social workers. 

Instructional Responses

Overall 14 % of parents wrote to suggest instructional strategies that supported their child’s learning. Often their child found structure and routine particularly helpful – especially for pupils in special schools.

Visual timetable; calm environment; consistency; understanding of sensory modulation dysfunction; self-calming strategies; confidence and self-esteem building strategies; TLC!

Parent of a child in special school.

Everything has to be routine ‒ if things change we have to let Tim know what is going to happen or where we are going. ‒ Picture exchange cards have been very useful with helping Tim to talk and communicate.

Parent of a child in primary school

Three other prominent themes included aspects of the way teachers communicated to pupils, especially from parents of children in primary school settings.

Lily likes to be with the same people. She tends to 'bond' to people. She enjoys structure and routine. I attended an early birds course and was told to slow ones speech and repeat the same phrase. That seems to have brought her speech on no end.

Parent of a child in primary school.

A further theme that was cited by parents of children in mainstream was providing encouragement and motivation. Parents also wrote about the importance of the child sitting at the front of the class or near the teacher.

Sitting at the front of the class in a position of her choice so that she can accommodate her 'null point'. Clear diction. Consideration of the balance issues without excluding her from activities.

Parent of a child in secondary school.

 Parents also made reference to the child needing more time to respond and a slower a slower pace to the instruction and more repetition A few also wrote about small steps or smaller targets. 

Some pupils clearly needed a range of particular instructional strategies.

Visual support, including demonstration and practise, mind-maps, pictures etc. Having his attention drawn to key points. Small class / group or individual teaching. Being seated in a position in the classroom where he won't be distracted and will be able to attend to teacher more easily  (at the front ?) Very hesitant about starting new things, joining groups so needs encouragement and preparation to ease the process. Specific anger management strategies positive reinforcement (any negative feedback has huge impact on self-esteem, anxiety, and increase negative behaviour. Parent of a child in secondary school.

Medical Support

In mainstream settings parents noted the importance of medical aspects of provision. I.e. support that would be provisioned outside the school setting, including medication, special diets, and medical aids such as hearing aids. Overall 17% of parents mentioned these although notably this was unequally skewed towards mainstream settings with parents in special schools by contrast rarely mentioned these as particular forms of support. The availability of medication and in particular the use of inhalers featured prominently amongst parent comments in both primary and secondary school returns.

Alex needs an inhaler on a regular basis. He has a normal healthy lifestyle otherwise and needs no extra support other than to be reassured that I'm there and he has access to his inhaler.

Parent of a child in primary school.

Although much less frequent parents also cited particular appliances such as hearing aids and grommits. For a minority of parents the most important aspect was their child’s diet, particularly where the child had an allergic reaction.

Severe eczema on back of leg ‒ cream and antibiotics meant Cally could use (stretch and bend) her leg without difficulty. Animal hair allergy ‒ keeping away from cause of allergy but inhaler helps wheezing if there is contact. Parent of a child in secondary school.

For diabetic pupils the monitoring was a vital part of the support.

Needs blood/sugar levels monitored and regular insulin injections.

Parent of a child in primary school.

Aids and Resources for Learning

In comparison to medical aids, school based aids or resources were much less frequently mentioned., with one in eight parents writing about some tangible aid. They were more likely to be mentioned by parents of children in special schools. Perhaps unsurprisingly computers were the most likely to be mentioned, although in some instances this also referred to working at the computer at home.

At school my child enjoys working on the computers. I understand he has a clear comprehension of the computer and of its many uses. He enjoys the games that are made for him, and the one to one tuition has been beneficial as its at this pace. But this will be something he will struggle with all his life.

Parent of a child in special school.

Parents also wrote about low tech support such as aids for reading:

Blue or green paper not white. Black print moves around on paper.

Parent of a child in primary school.

Cream paper, helpful, stops words moving about.

Parent of a child in secondary school.

Curriculum

Parents of children in secondary schools were slightly more likely to mention aspects of the curriculum than those in other settings with 18% of these parents including reference to what was or should be taught to their child.  16% of parents in primary schools and 12% in special schools also referred to the content of teaching. Parents wrote about the need for both additional work in a particular area and alternatives or adapted work.

Bet's PE teachers are very understanding and appreciate that Bet aware of her own physical limitations and is allowed "time out" when she needs to rest or feels any discomfort.

Parent of a child in secondary school.

By far the most frequently mentioned area was reading or English, which was more than four times likely to be cited than maths.

Abigail has poor concentration. She is improving reading by attending extra classes promoting improvements to aid her problem in phonics. Abi does get lots of support but recently I have found her demanding attention more, has no patience…

Parent of a child in secondary school.

It is mainly his handwriting and spelling. I make Stephan do handwriting practice at home, but I feel he needs more, cannot understand his writing sometimes.

Parent of a child in secondary school

Practice writing and reading regularly with teachers aid's (one to one) to aid fine and gross motor skills and communication skills.

Parent of a child in special school.

Parents also wrote about physical aspects of the curriculum and pupils needing alternatives to sport and PE. Perhaps surprisingly social skills were relatively infrequently mentioned , and only by parents in primary and special school settings.

The school offers a group session for him and others to discuss and learn about social skills. This is moderately helpful. He really just needs teachers to be understanding and on his side, most are not.

Parent of a child in primary school.

School is really helping Charlie not only with his education but life skills as well i.e. feeding, drinking and toileting.

Parent of a child in special school.

Environment

The most infrequently mentioned aspect was the environment with only 8% of parents directly noting this as being important for their child, with few differences between mainstream and special school returns. Where parents did mention it, reference was usually made to two elements, firstly that of noise and the acoustic properties of the environment and the second to that of providing a safe environment. A few parents also mentioned the importance of a calm environment. Working in a quiet environment Variety in learning methods.

Calm and stress free environment. Needs a structured teaching environment and a flexible approach. Is making excellent progress in his special school.

Comments were made that linked aspects of a child’s health condition to the properties of the physical environment. As a mother of a child in primary school wrote:

My child suffers from eczema and as a result finds it difficult to learn if the heating arrangments in the classroom are too high. Extremes of heat and cold cause great irritation, and therefore, distract. Keeping the environment (room) at an even temperature.

One strategy that teachers used which helped pupils access the environment was a pass card

Pat has a pass-out card that when she needs to she may prepare to leave the school site at the end of the afternoon a little earlier than her peers to avoid being jossled, this has been most appreciated by Pat when her joints have been painful during a flareup.

Parent of a child in secondary school.

We now turn to look briefly at targeted groups within the data: children with ASD, the majority of whom were in special school provision, pupils with asthma, the majority of whom were in mainstream and lastly those with mental health conditions.

Children with Autistic Spectrum Disorder

The most common diagnosis that children received was that of Autistic Spectrum Disorder, and the data was analysed to investigate whether as previous writers have found, there were issues that were specific to this group.  Of the 206 that were diagnosed as placed somewhere on the spectrum, over 90% experienced difficulties participating in classroom learning and interacting with peers. Indeed it limited activities at home for almost 4 in 5 children. The majority of children (69%) were educated in special schools.

Most parents (83%) rated the impact of their child’s condition as substantial with only 16% experiencing a minor impact to participation in daily life activities. Over 80% of the parents made comments about what their child found helpful with the largest category of comments falling within the organisation for learning category- 40% of parents made comments concerning the benefit for their child having one to one or small group learning or being supported by a classroom assistant. This was less true for parents of children in secondary schools.

One to one support at school, clear routine and instructions, structured day, continued re-affirment of behaviour and expectations. Computer access at school and home. One to one support to access music tuition, gym.

Parent of a child in special school.

Parental Responses – Children with ASD

The second most frequent category of response was instructional responses, with 22% of parents overall mentioning aspects of pedagogy. This was particularly true for parents of children in primary schools.

ADULTS TO UNDERSTAND ASD ie no point asking Jordan to stop doing something if request is directed to whole class/group. He needs HIS name called followed by request/instruction. ADULTS to be aware of Jordan's triggers and to understand his inappropriate responses are very difficult for him to curb. ADULTS to be aware how other pupils treat him i.e. he is their "pet" in order to be accepted, teased because of his extreme response.

Parent of a child in Primary School.

This was the largest category of response for parents with children in secondary schools although their responses were distributed thinly across categories:

clear short instructions Really needs someone to organise him.

Parent of a child in secondary school.

Attitudes and understanding were mentioned by just under 1 in 5 parents one parent indicating the importance of the school ethos.

A school ethos that actually welcomes disability diversities.

Parent of a child in primary school.

Health Needs

Some 680 children had a health condition and no reported learning difficulty. Most of these, 85% experienced no substantial impact on their daily life. The largest group of child with a health condition were the children with asthma.  In total 272 children had asthma varying from mild to more significant (144 in primary schools, 123 in secondary and just 6 in special schools) and the majority (80%) had no additional needs.   Fewer than 15% experienced difficulty participating in school or home activities.  For many of the children the impact of their health condition caused no difficulty and where it did it combined with additional difficulties that the child experienced.

It is perhaps unsurprising that many fewer parents, under half  (44%) provided comments on what their child found supportive and that when they did the most commonly referred to support was medical in nature, with just over half commenting often to refer to the importance of the child having access to their inhaler.

When Joseph  becomes breathless he needs to have his inhaler straight away. I have to give Joseph his inhaler twice a day at home, but when his chest is bad he has to have it more often.  Joseph suffers from chest infections about every 5/6 weeks so when his chest is bad he needs his inhaler at school.

Parent of a child in primary school.

Asthma ‒ mild. Uses Preventer daily. Uses blue inhaler as required and before exercise. Wayne self-administers. Sometimes feels he under performs in PE and on playground.

Parent of a child in secondary school.

Parental Responses – Children with asthma

However, taking the group as a whole, attitudes and understanding are in second place in order of support. As one parent of a child in a secondary school stated:

-   P. E. teacher showing understanding of problem ‒ asthma
‒ Understanding that school absence is sometimes unavoidable.

And another parent similarly says:

Not being made to take part in sports if asthma present…

Parent of a child in secondary school.

Additionally, 12 parents also mentioned aspects of the curriculum: five of these concerned supporting maths or English or both but the remainder referred to additional or alternative approaches to the curriculum:

Having missed periods of 2-3 weeks at a time my daughter would benefit from extra help to 'catch-up' the time she has missed either in classroom support or extra work at home relating to the period she has missed.

Parent of an 8 year old girl in a primary school.

Alternatives to outdoor play, physical activities when in recouperation.

Parents of a 7 year old girl in primary school.

These comments illustrate the important role for school in responding to the health needs of their pupils.

Mental Heath Difficulties

The place of mental health in relation to disability is not straight forward, and this is particularly true with reference to children and young people. In total there were 156 children whose parents identified them as having mental health needs, 83 in mainstream provision and 73 in special school, but not all of these children would be identified using the Equality Act Criteria.  Parents reported a substantial impact for 108 of the pupils, 44 of whom were in mainstream.  These included children with depression, anxiety and phobias.

An additional five children in mainstream, were clearly at risk of falling within this category, they were either seeing a counsellor or waiting for an appointment.

These were children who struggled to participate in classroom learning and/or interacting with their peers (78%) and for the majority in joining in other school activities (74%).  Slightly fewer experienced difficulties at home (62%). 71% of parents reported that their child experienced a substantial impact on daily life as a result of their difficulties.   Only 20 children had no additional needs identified by their parents.  Around 70% of the pupils in primary and special schools also had a behavioural difficulty, but this was only reported to be the case by 43% of secondary school parents.  Around 70% also had a learning difficulty and just over half speech and language difficulties.  Many of these children had a complex array of needs.

Just over three quarters of the parents (76%) wrote about what their child found helpful.

Parental Responses – All children with mental health needs

Table x above presents an overview of the comments made by parents of children with mental health needs. This was a diverse group of children as many had a diverse group of needs, especially those in special schools.  Parents did no always explicitly address mental health needs when they wrote about what their child found helpful. If we compare this subgroup to data from all the children we can see that parents were slightly more likely to highlight both the importance of organisational factors as well as attitudes and understanding of staff.

Non intrusive support, so that he has a person he can 'run' to when he is likely to lose control. He responds well to encouragement, boosting his self esteem which otherwise is very low, therefore he needs support that provides this positive feedback.

Parent of a child in primary school.

1-1 support for all activities routine. Non judgemental attitude from adults too could bridge the division between his world and other peoples. Specialist rather than mainstream educational/social support.

Parent of a child in special school.

In secondary school settings the attitude and understanding of others were particularly important whereas in primary schools more reference was made to access to one to one support and being in small groups.

Skilled Teaching Assistant really helps Michael get through a day at school. He has occasionally received counselling, which was beneficial, and advice from a psychiatrist. Michael … becomes emotional quite easily and so I am glad of any support I can get.

Parent of a child in secondary school.

Flexibility in the resposiveness of school was also important:

Pacing in relation to physical activities and mental activities. …..Support from friends. Consideration of timescales for homework. Consideration of periods of absence. (Alice currently takes Thursdays off, but has often taken further days off due to extreme fatigue. Being allowed to stay in class breaks, enter dinner hall early….

Parent of a 14 year old girl in secondary school.

A number of parents made reference to counselling although specialist services were not always viewed positively:

Helen has seen CAMHS for several years, also the school psychologist, counsellors and a family support worker, none of which she found helpful.

Parent of a 13 year old girl in secondary school.

Many children, especially those with the most complex needs, require an array of support: 

Tim needs lots of support to get along with his teachers and accept direction. Tim needs support to understand communication with friends, to control his behaviour and reduce anxiety. Thomas is very upset at school and hates his teacher, he needs lots of support to deal with this. Tim receives mental health support via psychologists, psychotherapy and psychiatry. He is often very depressed and talks about ending his life. Tim needs support when out and about to reduce anxiety and stay safe (noise, unexpected change etc). Tim needs to control his asthma and migraines with medication which gets worse with anxiety, allergies and stress. Lots of adult support needed.

Parent of a 12 year old boy in special school.

This quote illustrates the ways in which different conditions inter-relate and require sensitive and informed interactions from others. The responses from parents demonstrate some of the challenges pupils face : Luke has had a rough time, in terms of divorce, cafcass reports, court cases and a lot of deaths in the family…

Parent of a child in primary school.

And the important role of school as well as other professionals in supporting pupils.

Open access to paediatric ward of local hospital community medical personnel ‒ nurses, carers, telephone contact with paediatricians. Regular respite with childrens hospices. Sympathetic and understanding personnel at school. Regular attendance at school.

Parent of a child in special school.

Discussion

Our sample reflected the range of challenges children experience from those which occur regularly in every setting to those which are only occasionally experienced. However a common factor that united the children was their effect on classroom life and in consequence the pivotal role to be played by schools to enable their full participation in daily activities. Given the opportunity provided by the questionnaire, a large proportion of parents whose child had a physical or mental health condition communicated with schools about what support their child found helpful. This was particularly true of parents of children with ASD who formed the largest group of respondents.

For many parents the greatest area of support was seen in the way that learning was organised and in particular their child’s contact with adults. Overall a quarter of parents wrote that this was an aspect that was important for their child, especially for those in primary and special school settings. Access to adults featured heavily in parental responses with a quarter specifically referring to individual support, small groups or small classes. This requirement  was often linked in parental comments to providing a positive emotional climate, one where staff gave encouragement and reassurance. While schools may view the organisation for learning as a pedagogic response there is also a relational or affective element. Research has raised some important questions about the efficacy of support provided by classroom assistants in one-to-one and small group settings in mainstream schools (Webster et al 2010). A longitudinal UK study of everyday provision in schools revealed that teachers were almost entirely engaged in whole class work in both primary and secondary settings and that it was teaching assistants (TAs) who provided small group and individual support. The data suggests that this had a negative impact on pupil progress in core subjects even when controlling for factors such as prior attainment and SEN status (Blatchford 2009) as TAs lacked the pedagogical skills to promote pupil understanding. Instead their focus was on task completion, prompting pupils even by supplying the answers. Where TAs are trained to deliver a highly structured programme the outcomes are more promising (Farrell et al 2010).

Given that parental comments less frequently referred to other elements of pedagogical support, it is possible that their view of the supportive nature of these organisational arrangements reflects additional values. Howes et al (2003) in a review of previous research suggests that the style of interactions of a TA is different to that of a teacher and more likely to be informal and personalised, helping pupils to engage and stay on task. Webster et al (2009) refer to this as developing the “soft skills- confidence and motivation, dispositions towards learning” p331, and this is consistent with the views of pupils themselves (Fraser & Meadows 2008). Given the personalised and more extended interaction that TAs have with pupils it is quite possible that this increased interest and attention is what parents value, and they, like others, are not aware that this does not necessarily lead to improved learning outcomes.

Consistent with this analysis is the finding that in secondary schools there was a slight shift in parental responses to focus on the nature of the relationships children have with adults, whether they are understanding and supportive in their attitude towards the child. Notably this was also cited as an aspect that created barriers for their child. This difference is also reflected in the views of the children themselves (Georgeson in press) where younger children value more contact with adults and for older pupils it is the quality of that contact that is important. Research has consistently addressed the importance of attitudes in promoting the inclusion of children with disability and SEN in school life, “being helpful” can be as important as the help received.

Although fewer parents argued for different pedagogic responses their comments did suggest that access to specialist advice was helpful. This was often about the knowledge and understanding of children’s particular difficulties. Parsons et al (2009) also refer to the “strong desire for children’s individual needs to be adequately recognized, understood and supported” p54 although they conclude that equally important is the knowledge and understanding of the “impact of different conditions, disorders, disabilities or difficulties on children’s individual experiences and capabilities.”p54. The emphasis here can be placed on pupils’ experiences and well-being rather than on a more narrowly conceived view of attainment. Notably parental comments about the curriculum were largely about providing opportunities for children to develop their self-esteem and self- confidence, often to promote their social and communicative skills rather than to address particular areas of academic knowledge.

Within the data are hidden the needs of different groups. In this paper we have drawn out contrasts between pupils with ASD, pupils with asthma and those with mental health difficulties. Notably parents of children with ASD and those with mental health difficulties were particularly forthcoming about the support needs of their child.  Previous research on parents of children with ASD has highlighted the factors that appear to be associated with parental levels of satisfaction with the educational provision of their child. Whitaker (2007) writes “The extent to which parents felt that school staff understood (and empathised) with their children’s difficulties, and the perceived flexibility of the schools’ responses to the children’s needs… The extent and quality of reciprocal communication between school and home... [Were] strongly associated with levels of satisfaction.” P. 170.

The numbers of children diagnosed with asthma has been increasing over the past 20 years (Wolf et al 2002). Unsurprisingly medical support is the highest reported form of support for those with asthma (and low for those with ASD), as parents place emphasis on children having access to their inhalers and being able to self-medicate. While the evidence of effectiveness is not clear cut, self-management is an important strategy for children with asthma (Wolf et al 2002). However there are also important reminders in the data that health needs can generate the need for other educational responses. Asthmatic children for example may also require curriculum adjustments, partly due to absences that mean they may need the opportunity to catch up on learning that they have missed. 

Children with mental health needs are also a growing group (Nuffield Foundation 2010) with a doubling in the last 30 years of the number of young people who report that they frequently feel anxious or depressed. Where children have additional difficulties, it may be particularly challenging to identify these needs (Hackett et al 2010) and it’s likely that the returns of this survey under-represented this group. The data that was provided however illustrate finely the need for schools to be supportive and to provide an environment that does not exacerbate the challenges the child faces. There was a plea by some parents to look beyond the behaviour to understand what may lie beneath it.  Again the emphasis on being part of a smaller classroom unit and having access to a teaching assistant speak not just of a pedagogic response to the way that learning is organised, but also of the desire for a closer relationship, one which is flexible and responsive to children’s changing needs.

However the data also revealed some ambivalence about the schools and professional involvement with some parents being concerned that their mental health child’s difficulty should not be discussed. Schools therefore have a sensitive role to play in providing genuine opportunities for parents to contribute to enabling their child to participate fully in school life. It is likely that the “reasonable adjustments” that parents want are first and fore-most to understand the needs of their child.  Where absence plays a key part in the child’s coping, staff may be unaware of the challenges they face in participating in school life. While Local Authorities assess their services for children with mental health difficulties as high, including those for children with learning difficulties (Statistical Release 2011), the data from parents suggest that everyday contact with understanding adults within the school has a vital role to play in supporting their child.

The findings of this study are highly consistent with research on the social dimensions of schooling and the impact of relationships with teachers and others on a pupils’ sense of well-being. McLaughlin and Clarke (2010) review a body of research that reveals the interconnectedness of learning, relating and belonging.   Particularly relevant here is the evidence that teachers who are “good” and in particular perceived as kind and supportive play a particular role in emotional well-being, an example of the way you are treated being as important as how well you are taught. A technical approach which is so characteristic of policy and practice may fail to tackle institutions as social organisations. It may in particular overlook the issue of pupil-teacher relationships which appear to be as central in the everyday experience of young people in contributing to emotional well-being.

Conclusion

The questionnaire provided an important vehicle for ensuring that all parents had the opportunity to provide information on the supports to learning rather than simply targeting those parents whose child’s needs were already known to schools. In this way schools were opening up the possibilities to learn about the needs that had been invisible to them but which impacted on the child’s experiences in school. Parents took the opportunity to explain aspects of their child’s experience, such as the effect of not sleeping or the impact of absences on children’s confidence, setting up the potential for a two way dialogue for establishing the “level footing” required by the legislation.

However this should be seen as simply the first step. Parents in general would rather avoid an escalation of issues through “more open and less formalised communication between parents and schools” (Opinion Leader 2009 p8). Parents are therefore unlikely to want recourse to a legal system to pursue the rights of their child unless no other avenue is open to them. As others have indicated the law is an imperfect device for dealing with the complexities of “what’s best for the child” when the driver to decision-making is “what’s lawful” (King and King 2005). The potential of the Equality Act lies with setting up a process for a two-way partnership where detailed knowledge of the child can be exchanged to promote understanding of how the  learning environment can be developed to enhance the capabilities of the child, in the broadest sense.

Parents want to be assured that someone in the school truly “knows their child” and has regular contact with them, a finding consistent with the Lamb inquiry (Lamb 2009). This calls for understanding and empathy, most usefully employed where that person has some insight into the child’s condition and is also aware of the variety of ways that it manifests. Parental responses clearly revealed that a standard one-size- fits- all was not the appropriate approach. A personalized approach is not easily amenable to the setting of institutional targets and an action plan. Reasonable adjustments are too frequently seen only in terms of changes to physical layout or the provision of aids and equipment. Instead parental responses reinforce the need for schools to retain flexibility in their provision for children. Above all however schools need to have in place the two way communication process that supports them in “knowing” about the visible and invisible challenges that pupils with difficulties and disabilities face in participating in school life, processes that go beyond simply having data on file.

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