CLIENT PARTICIPATION – ACHIEVING THE IDEAL?

It can be difficult to help people with severe intellectual disability to make decisions about their lives and to be involved in planning for their future. Despite this difficulty it is important that people with intellectual disabilities can put forward their views about their lives and the services they receive. This article summarises two recent publications which look at the area of client participation explains Gareth Bailey, Social Worker, Daughters of Charity Services, Dublin

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Theresa Joyce and Lorraine Shuttleworth (2001) investigated the extent to which clients with challenging behaviours, living in a 24-hour supported housing scheme, actually enjoyed their day activities programme. They found that clients tended to receive only the limited range of day activities chosen by the service and little emphasis was placed on identifying, or providing for, people’s actual preferences. They observed that staff were aware that clients did not enjoy all of the activities in their daily programme and they concluded that services should try and avoid providing activities just for the sake of activities.

In the development of services it is important that client choices in the type of service they receive are respected and facilitated. This involves developing ways whereby clients can be supported in making decisions—from what to have for breakfast to where they should live.

Services need to incorporate innovative ways to assist those with significant communication difficulties to make choices and influence decisions. The authors recognise, however, that situations may arise where staff have to make assumptions about a person’s likes and dislikes when a client is unable to express them him/herself- This can be problematic and at times measuring how satisfied a client is with a service may seem impossible.

Similar difficulties were noted when Michelle Alexander and John Hegarty (2001) looked at the area of client participation in individual programme planning (IPP) meetings. IPPs arose from, among others, the principle of normalisation whereby clients and the significant persons in their lives set goals for the future to make positive changes in the clients life. Again, the basic philosophy behind this process should enable client participation, whereby the choices, needs and wishes of the individual are wholly incorporated in all aspects of future planning and decision making.

However, reflecting on the above points, the authors discovered that for some individuals with learning disabilities have little confidence or experience of communicating their thoughts and feelings. They go on to highlight some of the difficulties that exist in achieving client-focused IPP meetings. They state that just because a client attends a meeting it does not automatically mean that they participate at it. From existing studies, the authors discovered that issues contributing to clients’ lack of participation range from a conflict between client-related and service-related aims, to the claim that the participation of individuals with more profound intellectual disability could be seen as time-consuming.

From the two publications we can see that there exists the desire to promote and enable real client participation, but that in certain instances this can be a difficult ideal to realise. While this article does not allow for any detailed analysis or description of the methods outlined, it is heartening to see that frameworks exist in both articles where it is possible to use staff as a means to assist clients to inform decisions and future planning. In these studies, through observation, staff completed checklists based on clients’ behaviours and reactions to different settings in their daily lives which provided some kind of benchmark from which to measure areas such as enjoyment and active participation. Central to this is the need for these observations to be conscious and to be used in a way that actually influence and inform decisions. While staff are usually aware of a client’s likes and dislikes, these should be looked at more closely and recorded, so that all the information collected is accurate and can be used to make the right decisions.

To conclude, both articles identify the importance that clients, particularly those with severe intellectual disability, are facilitated to put participation into practice. To achieve this Theresa Joyce and Lorraine Shuttleworth highlighted the need for improved staff training and support, the provision of individualised needs-based opportunities and activities, and for service providers to actively promote choice. For them it is vital that agencies and professionals come up with ways to assess each client’s individual preferences and choices and that this needs to become a service priority.

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