Learning disability charity Mencap has launched a resource pack for people with profound and multiple learning disabilities (PMLD) designed to help them become more involved in decisions that affect their everyday lives.
The pack, Involve Me, aims to breakdown some of the barriers faced by people with PMLD. It targets everyone involved with people with PMLD, from families and carers to commissioners of services, and provides a range of resources designed to help them to become more involved decisions that affect them, such as what to wear, how they spend their time and where they live. Involve Me comprises a short booklet that summarises the project and a practical guide with an interactive DVD and resources. It also includes an independent evaluation, which has recommendations for everyone, including government, the Care Quality Commission, commissioners and support staff. The launch event at City Hall in London last Friday (September 23) showcased the resources, and some key messages, such as how creative approaches such as sharing stories and peer advocacy can be used to involve people in decision-making. Other messages included the need to take time and to get to know the person with PMLD well, not to make assumptions about the person, to learn from what they tell them and act on what is learnt. Involve Me is the result of a three-year project, involving 4 services. Each looked at how a different approach could be used to involve people with PMLD in decision-making and consultation. It comes in response to the Mental Capacity Act 2005, which states that when people are not able to make their own decisions they should be involved as much as possible in the decisions being made on their behalf.
Beverley Dawkins OBE, Mencap’s national officer for PMLD said: “People with PMLD are some of the most excluded in society. “Because they don’t use formal communication, they haven’t been able to speak up for their rights and needs like other people with a learning disability have. People around them often lack the skills to communicate with them and as a result their needs haven’t always been thought about and they have missed out. “Involve Me will equip everyone to meaningfully involve people with PMLD in decision-making and consultation. It shows how everyone, including support staff, families and policy makers can use creative approaches to capture people’s preferences and experiences and ensure these are represented in all aspects of decision-making.”