People with profound and multiple learning disabilities (PMLD) have too little say over their lives because professionals lack understanding of the Mental Capacity Act 2005, says Mencap.
The charity has called for more training in the act for health and social care staff as part of a toolkit published today on ensuring people with PMLD can have a greater role in decision-making.
The Involve Me guidance follows a three-year project examining how people with PMLD can be more involved, based on work with four services: Turning Point’s Salisbury service, Hammersmith and Fulham Mencap, a local authority day centre in Ellesmere Port, Cheshire, and the Rix Centre, which develops multi-media ways to involve people with learning disabilities.
An evaluation of the project, run by Mencap and the British Institute of Learning Disabilities, found that tools such as talking photo albums or digital albums that carried recordings of messages or sounds alongside each photo enabled service users to express likes and dislikes and contribute to decision-making.
However, it also identified a lack of understanding of the Mental Capacity Act among some staff despite its importance in determining the involvement of people with PMLD.
Although the actions of staff were in the spirit of the legislation, “ongoing reference by managers and staff to the Mental Capacity Act 2005 is more limited than would be expected”.
“People with PMLD are some of the most excluded people in society,” said Mencap’s national officer for profound and multiple learning disabilities, Beverley Dawkins.
“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.”
The evaluation called on service managers to invest in training in the Mental Capacity Act and ensure they set out clear procedures for ensuring that people with PMLD take as many decisions as possible and are involved in decisions that they are found to lack the capacity to take.
Low expectations of people with PMLD among service managers also needed to be challenged, it said.
Other recommendations include:
● Managers should use supervision to encourage creative ways for staff to engage with people with PMLD.
● Commissioners and providers should ensure that services have procedures in place to involve people with PMLD in decision-making.
● Services should prioritise investment in communication training for staff.
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