E D I T O R I A L

Dorothy Atkinson

Welcome to the final issue of 2006. The linking theme of the

papers in this collection is choice and decision-making; in

particular, the papers address the question of who gets to

decide what in the lives of people with learning disabilities.

Rarely, it seems, is it the person or people most directly

concerned. Often it is not their families either, as Helen Dorr

and Vicki Raphael of the National Family Carer Network,

discuss ‘in conversation’ with Andrew Holman. Although

families may have real concerns about the lack of provision

overall and the quality of existing services, they rarely have

‘a place at the table’ to make their views known. Widely

seen by health and social care practitioners as ‘over

protective’, too ‘emotional’ and generally difficult, parents

constantly have to challenge negative stereotypes in order to

have a say in the lives of their sons and daughters. The

Network, now 2 years into its 3-year initial funding, is an

important means by which family voices are at last being

heard.

If families are not involved in key decisions in the lives of

their relatives, then who is? The White Paper, Valuing People

(2001) states: ‘We believe that everyone should be able to

make choices. This includes people with severe and

profound disabilities who, with the right help and support,

can make important choices and express preferences about

their day to day lives’ (p. 24). The reality, however,

according to Liam Concannon (‘Inclusion or control?’) is

that the ‘new management culture’, with its emphasis on

meeting performance targets, driving down costs and

demonstrating value for money, has led to more barriers

to choice and inclusion rather than less. What is needed is

the time and space for commissioners and care managers to

be flexible and creative in supporting and meeting individ-

ual choices, using the mechanisms of person centred

planning and direct payments to do so. Whether the forces

of bureaucratization will enable this to happen remains to

be seen.

In the first of two ‘paired’ papers by Paula Manners and

Emma Carruthers, the authors explore and discuss ‘Emma’s

story’. Emma knows the reality of ‘living with learning

difficulties’ and wants journal readers and others to under-

stand what it is like. The themes of loss, anger and blame are

drawn out, and the point is made that, like so many people

with learning disabilities, Emma’s life is controlled by

services and many of the key decisions that concern her are

made by others. The second paper in the pair is a vivid

description of a role play in which the two professionals

working with Emma experience some of what it feels like to

have learning disabilities. In addition, they have to confront

their own ‘professional vulnerability’ – their inability also to

change the world.

If people with learning disabilities are to become – as the

White Paper intended – more actively involved in the

decisions that affect their lives, then they need accessible

information so they can make informed choices. In their

paper, ‘Are you allowed to say that?’, Andy Dunn and

colleagues outline the possible barriers to decision-making

for people with learning disabilities, including lack of

practice as well as cognitive and communication difficulties.

In order to overcome these barriers, they developed a short

video to inform potential psychology service users about

talking therapies – and then successfully tested it with 19

people at a local social education centre.

The issue of informed choice is addressed again in the

paper by Andrew Hawkins and Roger Look (‘Levels of

engagement’). Their study explores the barriers to physical

activity for people with learning disabilities – and discusses

how to find creative ways of overcoming them. The barriers

include lack of awareness of likely benefits, the range of

possible options, and financial constraints. Creative solu-

tions, they argue, include greater exposure to an array of

activities, supported participation through accessible infor-

mation, and cost effective group bookings and special

classes/courses.

The importance of diet, activity and healthy lifestyles is

topical. A recently published report by the Disability Rights

Commission (Equal Treatment: Closing the Gap, September,

2006) highlights the health inequalities experienced by

people with learning disabilities. Although they are at

greater risk of obesity, are more likely to suffer major illness,

develop serious health conditions at an early age and are

more likely to die younger than other people, they face

barriers in accessing health services. The question of choice

is important from a human rights perspective – but what

happens when that choice is ‘uninformed’ and leads to poor

ª 2006 The Author

Journal compilation ª 2006 Blackwell Publishing Ltd, 34, 195–196 doi:10.1111/j.1468-3156.2006.00424.x

diet, lack of exercise and all the health consequences that

follow? This is a topic pursued by Catherine Smyth and

Dorothy Bell (‘From biscuits to boyfriends’). In a critical

overview of recent literature on choice, they pinpoint the

neglect of ‘food choice’ and the consequences of ‘unhealthy

choices’ on people’s health and well-being. Greater know-

ledge, understanding and awareness all round is important,

for staff and other carers as well as people with learning

disabilities, so that everyone is in a position to make

informed choices.

Finally, in this issue, David Allen and colleagues describe

an ‘exciting and probably unique’ Special Projects Team,

working with people with learning disabilities and

challenging behaviour. The team, funded by the Welsh

Assembly, aims to provide a comprehensive service for

people with challenging behaviour. Its work covers reset-

tlement of people from a long stay hospital, identification of

current placements and future needs, staff training, links

across agencies and research reviews. This is a development

which may have resonance elsewhere, as it aims to provide

a good local service which, in time, will reduce the need for

expensive out-of-county placements for people with chal-

lenging behaviour. Cost effective local provision is likely to

be of interest to practitioners and policy-makers in many

areas of the UK and beyond.

196 Editorial

ª 2006 The Author

Journal compilation ª 2006 Blackwell Publishing Ltd, 34, 195–196