Inclusive and Supportive Education Congress International Special Education Conference Inclusion: Celebrating Diversity? 1st - 4th August 2005. Glasgow, Scotland

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Listening to Other People’s Voices

The parent perspective of the parent professional partnership in Special Educational Needs (SEN)

Dr Margaret F Rayner
52 Bedmond Road, Leverstock Green, Hemel Hempstead, Herts, HP3 8LL
margaret@talland38.fsnet.co.uk

Introduction

This paper is based on small scale qualitative research at doctoral level which has shown that the parents of children with special educational needs, who are being educated in the mainstream, need to be very proactive in obtaining appropriate education for their children.    Given that more than 60% of the 1,200,000 children identified with SEN are educated within the mainstream this involves a considerable number of parents.  

These parents are not only involved in the day to day care of their children and meeting normal parental demands but are also frequently involved with a range of professionals from education, health and social services.   It is not unusual for parents to be involved with as many as twelve or so professionals, that is to say professionals of different disciplines.   This figure can grow as it does not take into account not always seeing the same GP or speech therapist for example.    There are frequent interruptions to the child’s education while attending clinics, hospitals or therapy treatment.   Siblings sometimes need to miss school in order for their brother/sister to attend appointments. These appointments involve journeys, many of them lengthy or arduous.   They all need co-ordinating. Parents speak of the number of phone calls and letters they write; of the need to make relationships with each professional and of the constant change in personnel which adds further strain both for child and parent.   There is a drain on the parent’s energy levels, both physical and emotional and parents speak of feeling drained and of the need for medical assistance to see them through.    Ruth Card, (2005) Local Area Representative for Contact a family in St Helens, has calculated that she has made 774 contacts, spent 4,942 hours on appointments and phone calls and travelled 11,004 miles to appointments relating to her daughter’s needs, and her daughter is just seven years old.    Several of the parents in my study were taking, or had taken, tranquillisers.   The impact on the remainder of the family must not be underestimated.

Added to this parents do not find it easy to make relationships with professionals.   They see many of them as abrupt and curt, with too little time to devote to the particular problem in hand.    Where something is perceived as a problem it becomes a problem.   It is therefore vital that parents’ perceptions are taken seriously and acted upon.

This is no new concept.   As far back as 1978 the Warnock report introduced the term SEN to cover ‘all those children who needed special education in any form.’ (1.9).   In doing so they placed great emphasis on the need to consult with parents and children stating that ‘indeed, unless parents are seen as equal partners in the education process the purpose of our report will be frustrated’ (9.1).   Why, if this was accepted so long ago and continual research shows that parents are not always listened to nor are their views always taken note of, is this still the case?

Government policies which have been introduced to overcome the difficulties of providing adequate provision for children with SEN.

The 1981 Education Act set out to crystallise the ethos and philosophy of Warnock and to clarify the legal requirements for children with special needs.   A practical guide for teachers and Local Education Authorities took the form of the SEN Code of Practice (1994).   This document again reinforced the importance of parental input stating ‘Children’s progress will be diminished if their parents are not seen as partners …with unique knowledge and information to impart’.    It also accepted that parents need to believe that professionals take account of their views and anxieties and that they may need assistance in dealing with professionals.   To this end parents were to have the assistance of a Named Person who ‘should be someone whom the parents can trust’.   The revised Code of Practice (2002) continued to reinforce the importance of parental input and the need for professionals to avoid stereotypic views of parents as being unhelpful.   The onus for effective communication was placed with the professionals stating that they need to consider the ‘personal and emotional investment of parents and be aware of their feelings’ (2.7).   The Code of Practice (2002) went even further identifying the relationship the school develops with the parent as setting the tone for interactions with all other professionals and agencies overseeing the child’s education.   This assumes no prior identification of need.

The Code of Practice also highlighted the need for a working partnership between education and other agencies, in what it refers to as a ‘seamless’ service stating: ‘Working supportively and in partnership with parents and the children and young people themselves will ensure that everyone involved understands the responses of the professionals concerned, and lead to a better quality of provision’ (p100).    

This concept of a seamless service is set out in the government Green Paper ‘Every Child Matters’ (DfES 2003). It provides for a new Director of Children’s Services in local authorities to bring together education and children’s social services.   It will encourage Local Authorities and Primary Care Trusts to pool budgets into a Children’s Trust to support more joined up services.   The deadline for implementation is 2008. This should lead to greater information sharing across agencies in a controlled and measured way and more common standards in training and skills across the whole children’s workforce.  In their response to the consultation on ‘Every Child Matters’, NASEN stated ‘Dealing with parents who are vulnerable is no easy matter and frequently mishandled thus leaving very strong perceptions of ‘authority’ that are shared with friends and family.   Improving inter-professional relations must be a priority for the Green Paper’ .

It is to be hoped that children, young people and their families will also have an active role to play.   The provision of Children’s Trusts giving priority to disabled children and those with SEN is a welcome development however, listening to the voice of the parents and children will be critical to their success.

This then is the framework of the policies which professionals have to put into practice. There was evidence to show however, that putting policy into practice does not necessarily seem to have improved the relationship between parents and professionals at the grass roots.

Government seemed to have acknowledged that the relations between parents and professionals might at times become confrontational otherwise why set up Parent Partnership Groups.   The major function of these groups was, initially, to provide information to parents concerning the statutory assessment procedures and the local SEN provision.    However research, (Wolfendale and Cook 1997; Furze and Conrad 1997 Unwin and White 2001) has shown that case work (i.e. working for the parent) accounts for the majority of the work load and that these groups are very successful.

They must therefore be satisfying a need.

Parental Views of partnership

From parental interviews it is clear that the overall view of parents is that in order for there to be a worthwhile partnership between themselves and professionals there needs to be a large element of sharing and valuing of each other.   Parents acknowledge that they have information and knowledge which is of value to professionals, and that equally professionals have information and expertise to share with them.   They define partnerships as being:

‘someone to talk to and share the load with, obtain correct information and asses what should be done’;

‘to get the best one can for your child using each others knowledge and experience’;

‘It isn’t a partnership because it isn’t balanced.   The parent and the professional have different hats.   I don’t think that I know more about her condition than the school.   There are the implications, the physical and emotional difficulties.   It is a new experience and its been trial and error for all of us.’

‘It is working together for the same objectives but coming from different sides, working together.’

‘working together to push forward for money to help.’

‘There is no partnership, the professionals are on one level and the parents are more realistic’.

‘They should be there to help, approachable, not guarding themselves at all cost.’

What concerns do parents have?

• They feel professionals need to be ‘more human and approachable’, and that they need to think about how the parent is feeling.   One parent said ‘I suppose that professionals ‘get used’ to dealing with cases like mine.   I suppose it was his job – they just get used to it’. Many professionals display an abrupt or curt manner when dealing with parents.   One parent said ‘he needs to improve his bedside manner I was told ‘she has no sight in the left eye make sure she doesn’t injure the other one’, and ‘there could be complications she could be severely handicapped.’   Another was told ‘I think he’ll hold down a job’ which was said, according to the parent, with no compassion and left her ‘feeling desperate’.

• Parents say that professionals often gave the impression that they couldn’t be bothered.   Parents cited professionals who didn’t have their diary so couldn’t make appointments.   They spoke of having to fight for what they wanted for their child ‘I joined the Aphasic support group.   They are a feisty lot there, up for a fight, but they all seem to have gone through the mill to get what they have for their children’.   One told of the time when ‘two ladies came and were full of ideas – like a breath of fresh air – but they didn’t follow it up and send the report – I felt let down’.

• They feel that the child’s needs are paramount, that there should be sufficient funding to provide adequate services.   They appreciate the difficult position that head teachers are placed in having to juggle budgets, but feel that funds should be there. One parent had clear views saying ‘I know what I want for my child and I say you sort out how you get it for her, who pays for it, I don’t care as long as someone does.’

• Parents speak of professionals who are easily approached but also highlight others who are not. One said ‘All the teachers (in her child’s school) are very approachable, very caring and very supportive’. Another stated ‘people are always there to help when I phone.   I may not see all the people now but I can still phone up when I want to’.  Sadly though the experience of the majority is the opposite, as summed up by the following comments ‘There is not enough time and its on their terms’; ‘I went when I was summoned but if I rang the person was out, or they didn’t have their diary, it was all at their convenience.’

• Parents have concerns about the bureaucracy of the system.   Many refer to the mass of paperwork sent to them as being full of jargon.   One said ‘all this paperwork you read through is full of jargon and the people – nobody tells you what role they all play’ and another stated ‘its was like an exclusive club, where the professionals knew the terminology and the parents don’t.   Nobody takes   the time to explain what all these code of practice stages are, what it means’. One parent explained his bewilderment to me about the way in which the statementing process takes place.   He explained that his daughter was identified early in her life as having severe communication difficulties and had received assistance from the age of three.   ‘So why’ he asked ‘were we supposed to wait until two terms before she started school to start to get a statement.   It seemed so obvious to us that the school were going to need to advertise for additional help so why not start the statementing early and give the school plenty of time.’    In fact he did push the system and the statementing process commenced a term earlier.

• Often parents feel that their parenting skills are being questioned.   They do not wish to feel that professionals are critical of their parenting skills or are in any way criticising them for the problems that the child is displaying. One parent spoke of being made to feel guilty. Other parents said:

‘I am only doing my best’;

‘I don’t think that parents are taken seriously enough.   I was told I was an over pedantic mother’; ‘I’ve been toldI feel very sorry for you, you have a child who is totally uncontrollable but the doctor just gives you a bunch of pills and sends you away’;

‘It was very difficult to get anyone to listen to you especially as this was the firstchild.   The health visitor suggested I take away his dummy and bottle (aged18 months) but he wasn’t having those anyway’.  

• Parents complained of not being taken seriously enough; of professionals using stalling techniques to delay action.   Two parents identified problems within the first days of birth and were told they were ‘too sensitive’.   Others were told that ‘boys develop more slowly than girls’;‘you are a pedantic mother’.

• There is concern that parents are not made fully aware of who various professionals are or what their role is.   Parents spoke of meetings where they didn’t know who the people in the room were ‘although it was obvious they were going to have an input into my child’s future.’

• Professions display a reluctance to attend meetings.   Parents spoke of professionals sending reports but not attending review meetings, which they saw as lack of interest, and of reports written by people they had never heard of, which they saw as lack of communication.

• Frequently parents ask the question ‘Do professionals talk to each other?’   This was mainly directed at the health/education interface where many parents spoke of having to repeat the same thing to a succession of professionals and questioned: ‘do they talk to each other?’; ‘How can they make decisions unless they talk to each other?’; ‘Professionals need to get it right between themselves before they can hope to have a partnership with parents’.

• Parents speak frequently of having to fight in order to obtain the education they see as their child’s right. ‘Unless you are prepared to fight you won’t get anything’ ‘We had to fight our principles in order to spend all this money on things which he should get (as a right)’ ‘sometimes I don’t want to fight anymore – you have to have a lot of strength.   It’s not knowing the likely outcome, not being able to make plans.

• Parents also feel that their emotions are not fully considered and that there emotions have a direct bearing on the making of good partnerships.   Parents expressed feelings of:

Guilt. ‘Did I eat wrongly when I was pregnant?’ ‘What did I do wrong?’ ‘It seems wrong not to be able to say he’s coming on a treat because they will cut the money’.

Frustration.   ‘He was three when we stated asking for a statement and five when we got it’ ‘Why does it all take so long?’ ‘They said he needed speech therapy but he couldn’t have it until he was three’

Anxiety.‘I’m desperately worried aobut next year in case he doesn’t get hel[p’ ‘It is one of the most worrying times I have had’ ‘They (professionals) have no idea what the problems are, the problems we have had’

Concern over levels of provision. ‘It all comes down to money in the end’ ‘will there be enough money next year’

What do parents want?

Parents would like to see their child’s needs met without them having either to fight or struggle to get the help they feel is their child’s right.    They also feel that this would be beneficial in terms of educational and social skills and to the service providers in relation to costs.   They would like their workload in respect of ‘fighting for help’ ‘getting their problems over to all those different people’ simplified.

Many would like to have additional help with the formal side of statementing and review meetings.   One parent said ‘Why can’t they send someone like you to explain all this to me.   I try to read it all but I don’t really understand it’.   Another summed up the process thus:

 ‘The process of the statements was horrendous – just finding out where everyone belongs and what to do.   They tend to forget that it’s all new to you.   I just did as I was told I wrote letters and filled in forms.   It was all too much to take in – and I consider myself reasonably well educated and intelligent.   I felt that they were doing their best to give him the least possible – the minimum amount of help’.

Parents need to feel valued in the partnership.    They see the professionals as being in control.   They sometimes feel guilty because they are aware their child has problems.   They feel bruised and vulnerable and need their needs met just as much as the needs of their children.   They talk of having to ‘readjust’, ‘to come to terms with’,   they are very susceptible to insensitive remarks.

How are we to achieve improved working partnerhsips between parents and professionals?

The findings of my research highlighted the following areas, many of which are addressed in Every Child Matters (2003):

The need to define partnership:

Whilst accepting the difficulties in coming to a finite definition, showed the need to define the term partnership to have some agreed and accepted agreement on definition to use as a starting point for developing partnership.

The concept of partnership cannot be imposed through legislation.   It involves people and therefore is likely to be a transient concept varying from partnership to partnership.

It therefore seems likely that partnerships break down because of faults on both sides and it seems obvious that both parties should take responsibility for their improvement. However, because parents have nothing in common except that they all have children the onus, and indeed requirement, for making any improvement in partnerships will have to come from the professionals.

Greater personal contact between parents and professionals:

If the way that parents perceive professional attitude is to change then professionals need to become aware of how they are perceived.    ‘It has been suggested that teachers are good at communicating but sometimes they are not too good at listening’. (Blamires et al 1997).    ‘Active listening’ involves a considerable amount of effort by the listener.    It is not a question of just hearing what is said, but it also involves the need to consider the feelings and emotions behind the statements understanding and checking ones understanding. This entails time, it is not something which is easily carried out.   One problem is that the current system of education in England does not allow for teachers to have unlimited time available to participate in partnerships with parents.   In Denmark it is assumed that teachers will devote two hours per week to contact with parents (Macbeth 1989).   Based on a forty week year in England this would amount to eighty hours, and even that may not be sufficient.   It is not something which teachers can resolve on their own, it requires a re-think at a higher level.   It is though, an issue which needs to be addressed both from the time aspect and also the implications for training which are embedded within the concept.

The need for greater transparency and consistency regarding funding:

The research also highlighted the anomalies in funding and the provision of services in particular those of the speech therapy services. Additional funding for speech and language services is addressed in Every Child Matters. There is a need for additional finance to fund the needs of children with additional needs.   Current funding is not sufficient to resolve the problem of parents needing to fight for funding or the correct provision for their children.

The need for joined up working:

The advent of the new Integrated or Child, Family and School Services and the Children’s Trusts should go a long way in addressing these needs bringing about a seamless service in the interests of the child led by one named professional as the lead officer in each case.   Professionals will also be encouraged to work in multi-discipline teams based in and around schools and Children’s Centres.

The need for more user friendly documentation:

There is a need for documentation to be less bureaucratic but at the same time not talking down.   There is little point in building up   good face to face partnerships if the documentation sent to parents leaves them needing to seek help to understand what has been written.

The need for training for professionals:

There is considerable research to back my findings that training for practising teachers and for the inclusion of partnership skills in the initial teacher training programmes is an issue which needs addressing. If the concept of common core training for those who work solely with children and families and those with wider roles in relation to children and families’ needs becomes practice this will develop a more consistent approach.

The framework has been set.   With adequate training, funding and above all sensitive handling, maybe the lives of children with additional needs and their families will be smoother in the future.   Perhaps the voices are at last being heard.

REFERENCES

Blamires, M., Robertson, C. and Blamires, J. (1997)   Parent–teacher Partnership.   Practical Approaches to meeting Special Educational Needs, London,  Fulton

Department for Education and Science   (1978)  Report of the Committee of Enquiry into the Education of Handicapped Children and Young People, Warnock Report  London HMSO.

Department for Education and Employment   (1994) Code of Practice on the Identification and assessment of Special Educational Needs, London, HMSO.

Department for Education and Skills (2002) Special Educational Needs Code of Practice, Nottingham, DfES publications.

Department for Education and Skills (2003)   Green Paper on Every Child Matters

Furze, T. and Conrad, A., (1997) A review of parent partnership schemes in Wolfendale, S. (ed) Working with parents of SEN children after the Code of Practice, London. Fulton.

NASEN Response to Every Child Matters consultation (unpublished)

Unwin, P. and White, S., (2001) Parent Partnership Services – the organisational dilemma, Special Children March 2001

Wolfendale, S. and Cook, G. (1997) Evaluation of Special Educational Needs.   Parent Partnership Schemes, DfEE Research Report RR34, Norwich, HMSO

Card,   R. (2005) www.cafamily.org.uk

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