BOOK REVIEW: BETTER CHOICES–FULLER LIVES: WORKING WITH PEOPLE WITH PROFOUND LEARNING DISABILITY AND COMPLEX SUPPORT NEEDS

Karen Harrold, Day Services Manager St Michael's House, Dublin

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This training pack includes six independent study units for staff and first-line managers working with people who have a profound learning disability. It has been designed to support individual study, in-house training and established BILD distance learning courses.

Unit 1, ‘Services, staff and service users’ , identifies individuals and groups who may find the material of benefit. It asks them to think about their contribution to the service they provide, to examine the strengths and limitations of the organisation within which they work, and to look at change with a positive attitude.

Unit 2, ‘Effects of disability on living and learning’, discusses the ways in which people with profound learning disabilities learn, the importance of their learning about the world around them and how to do things in that world. The unit discusses disabilities and the learning process and how it is affected by sensory or intellectual impairment, physical disability or challenging behaviours, medical conditions and syndromes. If the learning environment is interesting, enjoyable and fun, and there are real and meaningful experiences happening with staff who have built up a trusting and respectful relationship, people with profound learning disabilities can expand their learning and develop their interests. Giving ‘the right kind of help’ is the key. The text gives the reader a step-by-step guide, asking questions about how the learning environment may be changed to assist people to optimise their abilities.

Unit 3 deals with ‘Building relationships’ and breaks down the process of communication into three areas: (1) reflex communication, (2) pre-intentional, and (3) intentional communication. How many times does a person with profound disability say ‘No’ before we believe them? A person may refuse food or drink, but we keep trying until the person accepts. What may be viewed as non-cooperation or non-compliant behaviour may simply be the person saying ‘No, I don’t want this now’. Of course, there are times when it may be imperative for the person to cooperate, e.g. taking medication. There are creative ways which staff may use to gain acceptance, such as hiding tablets in a chocolate or favourite food.

This unit outlines ways of communicating and the importance of staff observing closely as they develop their relationship with the service user–picking up on noises, gestures, eye-pointing or other non-verbal cues–in order to respond appropriately to the person.

The area of sexuality is also covered in Unit 3, which provides an excellent discussion on this very delicate and sensitive area for parents, families and staff alike. Few of us working in this area have any difficulty with the assertion of people’s rights to sexual expression and relationships, making choices and having freedom from abuse or exploitation. However, for people to make informed choices they must first have access to information and understand it. This combines rights and responsibilities. Staff members find difficulty in relating the information in a real and concrete way to the person with profound learning disabilities, and in dealing with the many ethical questions raised.

Current issues commonly dealt with by staff include inappropriate touching or contact with another person or anti-social behaviours which are often addressed with behaviour modification programmes or perhaps with medication. Often it is a matter of saying ‘Stop that’ and hoping the issue goes away. Parents, families and staff need considerable support in this area, and certainly this text could be used as a starting point.

Unit 4, ‘Learning for everyday living’, asks staff to examine daily routines and to question the participation levels of the people they work with. Could routines be done differently to allow the person to take more control? This book challenges staff not to miss daily opportunities in which the service user can be involved, just because over the years we have always prepared the meal table, washed the clothes, put them in the dryer, folded them, etc. People will never learn if they are not involved. Staff are asked to break down the activity into smaller tasks and find out what help is required, to record in order to show progress achieved or to identify where further assistance is required.

Unit 5, ‘Learning in the wider world’, examines the attitudes of the reader and those others within the wider community, and asks why community is important. Again readers are asked to compare their own everyday activities–travelling to work by bus/train, socialising with friends at the cinema or pub, or shopping in the latest mall–to those of a service user with profound learning disabilities. The benefits of community experiences are identified and examples of people in various community settings are given. Much preparation and support is necessary for people with profound learning disability if they are to benefit from community activities, and staff too need support when they encounter difficulties.

Unit 6, ‘Planning for everyday practice’, outlines a structure within which staff can set goals and priorities. Too much structure may inhibit the person from having any control his/her own life, and a holistic approach is recommended when prioritising goals. The reader is reminded to think of the person’s whole life, not just one aspect. We often fall into the trap where a single feature of a person is the one aspect that gets spoken about most often, e.g. if an individual has epilepsy or challenging behaviour. From talking to service users, I have found that they understand that staff need to know a lot of necessary information about them, but they also want staff to know the positive aspects of who they are, what they can do and the things they like.

It is important to have a flexible approach and to include a review afterwards to find out how well the plan has worked. On the front line, each staff member must feel confident and supported in their work with people for whom they are in a position of advocacy. It remains important for people with profound learning disability to be involved and able to express their feelings, opinions, needs, likes and dislikes.

Overall, Better choices: Fuller lives gives a very good introduction to working with people with profound learning disabilities. It would be suitable reading for a new staff member. There are many useful pen pictures of real people in real situations and how staff interact with service users. For the seasoned staff member, the text reaffirms points of good practice and gives food for thought in areas that may have become routine. The activities in each unit make this an active learning package. This training pack would be a useful resource for any centre. Each book covers a topic which can be read on its own or as part of the overall pack. The presentation of the text makes easy reading and there is an excellent selection of up-to-date reference material for the reader.

BETTER CHOICES–FULLER LIVES: WORKING WITH PEOPLE WITH PROFOUND LEARNING DISABILITY AND COMPLEX SUPPORT NEEDS, by Alice Bradley and Carol Ouvry. BILD, First Draft Publications Series, 1999. ISBN 1 902519 05 1. Price stg$50 + 5% p&p. Available (quoting PUB/99/9) from BILD Publications, Plymbridge Distributors, Estover Road, Plymouth PL6 7PZ.