Involving adults with intellectual and developmental disability who display behaviours that challenge in decisions relating to their support

Introduction

Self-determination, autonomy and involvement in decisions about an individual’s own life are core aspects of human rights, feature strongly in UK policy and have been conceptualised as a quality of life domain for more than 25 years. However, people with intellectual and developmental disabilities (IDD) typically experience low levels of choice and control. Those with more severe disabilities, more severe communication challenges and those who show behaviours considered as challenging are particularly likely to experience a lack of choice and control. Current methods for involvement are typically focused around those people who are more able and who use conventional means of communication. Much less has been developed to support the self-determination and involvement of those with more severe communication challenges. Choice and control is of particular importance for people with IDD who show behaviours considered as challenging.

Such behaviours are functional in that they are a way in which individuals may access an unmet need (for example, to escape from a difficult situation or to access a preferred activity). While the behaviour may be unwanted, the need is seen as being reasonable. The problem is not located within the individual but seen as a reaction to the person being in a difficult environment. Improving the environment and the quality of life of individuals is considered a key intervention in reducing such behaviour and is central to Positive Behaviour Support, an evidence-based framework for intervention. However, consulting individuals about their care and support and involving them in the development of their behaviour support plan rarely happens within PBS, most likely because of people’s complex communication challenges.

Objectives

This project aims to strengthen social care by better understanding how to access and respond to the views, will and preferences of people with intellectual and development disabilities (IDD), with a particular focus on ensuring people’s involvement in the development of behaviour support plans. It will explore the feasibility and potential impact of a toolkit to support the involvement of individuals with IDD who show behaviours described as challenging in decisions related to their behaviour support plan.

Methods

The project will do this by:

• Working with 6 people (including their families, carers and staff) to test out key techniques related to communication and decision making in the context of assessing behaviour and developing a behaviour support plan. This will include people who have a range of communication skills and will lead to a co-produced draft toolkit;
• Piloting this toolkit and the methods of evaluating impact of the toolkit with up to 12 individuals (in three services);
• Revising the toolkit;
• Carrying out, a small scale evaluation of the toolkit will take place. Services will be split into two groups, an experimental and control group. Services will be followed up after 6 months. The project will assess impact on staff views and perceptions, quality of behaviour support plans, level of behaviours that challenge, and quality of life.