Human Rights and Values

Choice

Choice

Exercising choice and making decisions is a part of everyday life for all people, and a fundamental part of being recognised as an individual. People with learning disabilities can find it difficult to gather and process all the information required to make a choice or decision.

The Choice Initiative, a project supported by the Foundation for People with Learning Disabilities, found that establishing a means of communication is the first step to helping people with learning disabilities to make choices. It is very important to pay close attention to the individual, not make any assumptions, listen and appreciate that all people have different ways of expressing themselves.

Dependent on the situation, it can also be important to involve someone who knows the individual well. Other situations will be best handled with the help of an independent person.

Exercising choice for most people is part of everyday life. It is also a fundamental part of being recognised as individual and being respected as a person. Whether these choices are minor or major they all contribute to having control over our lives. Minor choices are typically taken for granted. Major choices or decisions are those such as where to live, work, whether to have a particular type of medical treatment or even who to be intimate with. These are the ones that can have a big impact and long-term effect on people's lives.

Choice for consumers is routinely promoted as a quality standard when care providers advertise their services. For politicians and policymakers alike, it has become something of a buzzword. For people receiving care and support services there is often a very real gap between the rhetoric and the experience. Consideration should be given regarding the difference between making a 'choice' and a 'decision'.

Generally speaking, making a 'choice' is referred to when the options are not too important. A 'decision' is claimed to relate to a more fundamental choice which can have a greater impact on an individual's life. Whilst 'choice' has started to figure in the lives of some people with learning disabilities, wider 'decision making' has not yet made a similar impact. This is one of the areas Person Centred Planning and its process attempts to address. (See Person Centred Planning.)

In order to make a major decision a person should have:

• Access to appropriate and sufficient information
• The capacity to understand the information, the options and the consequences of the various outcomes
• The opportunity to make their decision freely and without any duress or biased encouragement

A person considered to have an intellectual disability can be at a disadvantage in light of the above. Historically, other parties have simply made decisions on behalf of individuals or persuaded them in one direction or another.

The question of a person's legal mental capacity may have to be addressed but this is usually only in exceptional circumstances, such as those requiring court proceedings.

The vast majority of decisions, and perhaps virtually all choices, can be addressed by most adults with learning disabilities if the information and options are made accessible to them in terms they can understand. These efforts can involve advocates and other measures to safeguard the decision making and may for some parties require considerable time and expertise in communication.

The Choice Initiative, a project supported by the Foundation for People with Learning Disability, found that establishing a means of communication was an essential starting point before the issue of choice could be addressed. When working with people who had high support needs, project workers discovered that although there are tools and techniques to aid communication, it was just as important to do very basic and simple things. These involved paying close attention to people, not making any assumptions, really listening and realising that even when people are being quiet they are still perhaps communicating and some people can have very subtle and complex ways of expressing themselves. The project workers also said much of the communication was informal and unstructured, using verbal and non-verbal cues, tone of voice, body language, facial expression and eye contact.

Sometimes presenting the same information in different ways and small pieces and continually checking understanding, can help with progression to an overall understanding and therefore decision. It may well become apparent that the person cannot make a decision completely on their own. In this case, every effort should be made to ensure they have participated in the decision making process to the fullest degree.

Depending on the situation, it may be important to involve a person who knows the individual well. Those close to an individual can teach us a lot about their communication. On other occasions, it may be appropriate to use a person who is completely independent to work with a client, if it is feared that they might be the recipient of the received wisdom of someone who is close. Clearly Citizen Advocates can have an important role to play as also highlighted in the White Paper 'Valuing People' (2001) and the Disabled Persons Act (1986).

Exploring choice can also expose people to potential risk. Professionals and staff caring for people with a learning disability can feel a clear tension regarding choice and empowerment and risk for the individual. Whilst being aware of their duty of care and wishing to empower users to take reasonable risks on the one hand, they are acutely aware of being accountable for their actions and can fear a blame culture. Here is where appropriate risk policies have a role to play and organisations should develop a clear definition of risk which looks at probability and consequences. If people with learning disabilities are to enjoy full lives in the community, agencies need to develop risk policies which embrace both protection and empowerment issues.

It has been suggested that choice is only meaningful if at least two attractive options are given which both meet a person's wish or aspiration. If one choice is vastly superior over another (or neither is appropriate) then it is not actively choosing!