Seeing the whole child

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Good communication is central to achieving successful educational outcomes for children with visual impairment

If you were to ask parents to express a major concern about their children’s educational needs and provision, I feel sure most of them would respond: “communication.” Good communication is the key that enables parents and professionals to work together in a constructive and amicable way, which in turn helps children to receive and enjoy the appropriate education they deserve.

There are an estimated 24,000 children with visual impairment (VI) in the UK, as many as 60 per cent of whom have additional needs. The parents of a child who is blind or partially sighted have a right to know that their child has been recognised as needing a little extra support and that they will have their needs fully assessed to ensure that they are addressed.

For a child who is sight impaired (formerly known as partially sighted) or severely sight impaired (formerly known as blind), extra resources may need to be put in place for them to fully access the curriculum at the same time as their sighted peers. It is important that parents know what this means and how it will work.

Often, parents rely on professionals to keep them informed about what is happening, to allay any fears and anxieties and, when necessary, to provide some emotional support. However, some of the terminology used in the field of VI can be little short of terrifying for parents. For example, frequently used words such as ophthalmologist, orthoptist and optometrist all refer to different kinds of eye doctors. The terms microphthalmia, anopthalmia, retinal dystrophy and cerebral visual impairment, all names for eye conditions, might be bamboozling for anyone, but with a little description can be clarified.

Of course, there are some professionals who are great communicators, and many that routinely “go the extra mile” to ensure that they are understood. But it must not be forgotten that for the the vast majority of parents, it will be the first time that they have been in brought into contact with the system, while for professionals, it will all be familiar territory.

Parents may not know how to get the best education for their child.The school is usually the first point of contact. However, while parents of a child with VI may recognise that their child needs extra assistance, they are often at a loss as to what they should do to secure their child’s right to a fulfilling education. Many parents are initially unaware of how they should approach the issue of their child’s VI or the types of specialist support and resources that are available to them in school.

Parents can get upset or angry, when all they want to do is to make sure that they are doing their best for their child. They often feel they have to ask too much and too often and they may fear upsetting school staff when, in reality, they are simply trying to find out what is happening with their child and how they can help.

Some parents feel that by having to ask for access to a specialist VI resource or specialist VI support for their child they may be thought greedy. They worry that their request for extra help may not be taken seriously or may be deemed to be one resource too far when, in fact, it represents a need, not a desire.

Good communication, though, can help lessen these anxieties and create a better relationship between parents and education providers. Some parents would rather hear a negative reply than wait for several weeks for a response. Sometimes, all that is needed is the giving of information, but often parents do not have even this level of communication and they can feel they are not allowed to know what is in place for their child.

Even a reply such as “I don’t have the information or answer yet” is a simple yet very effective way of letting people know that their case is still being worked on and that they are not forgotten.

Communication is important at all levels, and all too often the system becomes unnecessarily bureaucratic and complex. Attending meetings can be very daunting for parents, especially when they are the only non-professionals in the room. Indeed, parents may not fully understand the roles of those in the meeting with them and may be afraid to ask too often for clarification.

Parents can feel that professionals are unapproachable and they may worry that they are making judgements and decisions which have a huge and lasting effect on their child’s future when, in some cases, they have never even met them.

More effective communication by professionals to parents, and vice versa, would help to address all these issues. It is essential to listen, empathise, establish relationships which support and empower, and act sensitively. After all, parents want the focus to be on the whole child, not just on their VI.

Communication between all staff working within the field of VI is also critical. VI is a low-incidence disability and not everyone will come across a child who is sight impaired or severely sight impaired. So it is vital that good practice, information and advice are available for all to share.

Sometimes, parents welcome help from someone qualified and experienced in navigating the complicated worlds of learning with sight loss and SEN provision. This is a large part of the role of the specialised educational advocate within the VI sector. Advocates, some of whom are qualified teachers of the visually impaired and hold professional teaching qualifications or have other relevant specialised experience, can work with parents and  students and liaise with teachers, learning support assistants, eye clinic liaison officers, educational  psychologists, visual impairment services and charities to try and ensure effective communication.

It is important for parents to know that there is someone to listen, to endorse their opinions and offer pointers for meetings, to provide advice about legal issues and how to present their contributions, and to give expert, professionally recognised support in dealing with reviews, statements of SEN and tribunal reports.

This specialist support can be given at any time, from the point of diagnosis, through all the educational stages from pre-school to further education and university and it can be provided anywhere. Educational advocates can ensure that families become known to VI services, that statements of SEN are completed with appropriate specificity and detail, that appeals are withdrawn before tribunal or, in the event of a tribunal hearing, that good representation is in place to ensure a fair hearing for the family.

The ultimate aim is to ensure that all parents of children and young people with VI can gain access to appropriate educational provision to meet their children’s individual needs and enable them to achieve their goals in the best possible environment.

Further information

Glenys Critchley is Education Manager (North) of the National Blind Children’s Society:
www.nbcs.org.uk

This article was first published in issue 47 (July/August 2010) of SEN Magazine.

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