2 British Journal of Learning Disabilities Vol. 27 (1999)

Editorial

Dorothy Atkinson and Jan Walmsley

We are very pleased to enclose in this edition of the journal David Felce's paper, 'Enhancing the Quality of Life of People Receiving Residential Support'. This paper was given as the Gerry Simon Lecture at the British Institute of Learning Disabilities Annual Conference in September, 1998. It provides an excellent overview of the quantity and quality of residential care for people with learning disabilities at the end of the 1990s. The paper reports that there are shortfalls in both. Thus there is a shortfall in the overall number of places available. The 'ordinary life' policy, based on the principle of Normalisa- tion, envisaged provision for all those adults who wanted and needed a residential alternative to the family home. The shortfall in places makes this an impossible dream for many. There ate also shortfalls in the quality of residential care, in that it is not as accessible, flexible, individually-tailored nor as locally-based, as the ordinary life policy requires. And in the residential homes them- selves there are more shortfalls in the quality of staff support, and in the capacity of some individual staff members to interact and engage with people with learn- ing disabilities.

What is needed to make good these shortfalls? It is not enough, according to Felce, to close the hospitals. Nor is it enough to argue for more 'ordinariness'. What's needed, in fact, is less ordinariness and more 'differentiation'. This needs to start at a macro level, with a New Millen- nium equivalent of the 1971 White Paper ('Better Services for the Mentally Handicapped') which, in its time, had helped set in train the shift from hospital to community care. Felce argues for a new national policy statement on learning disability to address the quality of community care for people with learning disabilities, especially the quality of residential care in all of its manifestations.

The paper argues against a perceived 'drift' towards generic policy and practice. It argues instead for services which meet the distinctive and diverse needs of people with learning disabilities, and which enhance the quality of their lives through the quality of their environment and the quality of the care they receive. This is not, accord- ing to Felce, necessarily a question of more staff, but a question of a better trained, managed and supported workforce. Whilst the paper supports the principles of 'ordinary living', it argues that the way to an ordinary life is through differentiation and specialisation so that the lives of people with learning disabilities are enhanced through supported access to wide-ranging opportunities, rather than diminished through the neglect of their indi- vidual needs and wishes. The better the quality of the support, the better the quality of life - so that people with learning disabilities are enabled to move from their

traditional role of 'patient' or 'client' to being a house- holder or even a citizen.

The papers in this issue reflect this position. They are specialist papers, each suggesting in its own way how the application of specialist knowledge and skill can help enhance the quality of the lives of people with learning disabilities. The papers cover many different aspects of those lives. They range from working with people with learning disabilities to enable them to access health care (Dodd and Brunker), to develop alcohol awareness (Forbat), to improve their communication skills (Dobson, Stanley and Maley) through giving feedback on services (McKenzie, Murray and Matheson); to working suppor- tively with families (Barr).

Good health is a prerequisite of a good life. And yet people with learning disabilities may lack information about diet, exercise and lifestyle; they may have little awareness about their bodies and how they work; they may have few or no words to describe pain; and may lack the confidence and social skills to consult a doctor. Karen Dodd and Jo Brunker address these issues in their paper, 'Feeling Poorly'. They describe how they designed a teaching package for use with a group of people with learning disabilities. The teaching sessions were success- ful. People learnt about their bodies, understood pain and symptoms, and developed the communication skills to go to the doctor's surgery. The authors showed that health awareness can be taught. This was, however, a small study and short term. Clearly more work remains to be done in this area.

'Ordinary living' in the community brings many oppor- tunities in its wake, including access to pubs and alcohol. How much do people with learning disabilities under- stand about the effects of alcohol on them? Liz Forbat's paper is an account of an alcohol awareness course run with a group of people with learning disabilities on a medium secure unit. Alcohol had already featured in their lives and, in the fullness of time, they would be resettled into the community with renewed access to pubs and alcohol. The pilot study reported here used a teaching package combined with group work to encourage participants to develop positive attitudes towards 'sensible drinking'. Again this was a small-scale study, but the approach did work - at least in the short term.

Life in the community brings demands as well as rewards. It requires people to interact and communicate with others. For some people with learning disabilities, especially those with challenging behaviours, this pre- sents problems. Communication itself, in whatever form, may be difficult for some people, but getting it right in a

British Journal of Learning Disabilities Vol. 27 (1999) . 3

particular social context may defeat them. The small study reported by Susan Dobson, Brian Stanley and Lisa Maley attempted to put communication into a naturally occurring context. They chose an exercise class where people with challenging behaviours could work on their social and communication skills in a non-threatening environment. The combination of exercise and com- munication apparently worked well.

What matters most to people with learning disabilities in terms of the services they receive? Do learning dis- ability services contribute to the quality of people’s lives? Yes, they do, according to the findings of Karen McKenzie, George Murray and Edith Matheson. They consulted 56 people about what mattered to them - what they regarded as ’important’ - in their day ser- vices. What emerged was a consensus of views about the ’importance’ of regular reviews and written plans, and how ‘important‘ it is to people to be directly involved in them.

Good working relationships between professionals - and between professionals and families - matter also in the context of genetic counselling. Getting genetic infor- mation from a geneticist, a paediatrician or other expert, is only the first step in understanding its meaning and consequences, and coming to terms with the diagnosis of learning disability. In fact, genetic counselling, according to Owen Barr, may have mixed or even nega- tive consequences, as famdies struggle with complex, sometimes contradictory, feelings of blame, guilt, fear, stress and so on. This is where other people come in - health visitors, community learning disability nurses and social workers - to listen to parents’ concerns, to understand them and to be supportive. This can only be done within an ’effective partnership’ with parents, a partnership based on mutual respect and agreed aims. In his paper, Barr points to good practice in a specific context; the same principles of collaborative work and partnerships with parents could equally well apply elsewhere.

The papers reflect Felce’s themes of differentiation and specialisation. They report successes. They show a way forward for others. And yet the voice of the person with learning disabilities is still silent in these pages - and the expert’s voice continues, by and large, to use the language of ’clients’ and ’patients’. Can we retain what‘s good about specialist knowledge and expertise, whilst listening ever more carefully to people with learning disabilities and their families and - wherever possible - enabling people to express their views? We hope so.

bild Education Events

A Proactive Approach to Managing Challenging

Behaviour

19th May - Glasgow

This workshop will give participants the Dpportunity to consider proactive and nteractive ways of managing challenging Dehaviour. This workshop is experiential and participants will have the chance to Dractice some of the ideas put forward by Dr Mark Harold & Mark Mulrooney

Ways of working with people with learning disabilities who have mental health problems -

Theory into Practice

20th May - Glasgow

This workshop will consider ways of assessing mental health problems led by David Coyle and Linda Milner

Almost all you wanted to know about autism

17th June - Norwich

This workshop will explore ways of working with people with autism including Asperger‘s Syndrome led by Cliff Hawkins.

Jackie Wadlow will also be looking at TEACCH principles and ways of applying it in different situations.

For further details of both events, Contact: Liz Howells at BlLD on

01562 850251