A right to be heard
Most people don’t understand what it’s like to be someone with profound and multiple learning disabilities (PMLD).
- We must campaign for change so that everyone with PMLD can take their rightful place in society.
- We must listen to family carers and help them get the support they need.
- We must increase advocacy provision for people with PMLD.
Find out what we are doing
Sharing good practice about involving people with PMLD in decision making
- The Choice Initiative by the Foundation for People with Learning Disabilities (FPLD) explored how people with severe, profound and multiple learning disabilities can express choices and take more control over their own lives.
- Mencap is working with others to collect good practice about involving and including people with PMLD.
Increasing advocacy provision
- Scope’s Voices Through Advocacy project is running free Non Instructed advocacy training for any advocate in England and Wales.
- Mencap’s Getting to Know You project trains self advocates with a learning disability to speak up for people with PMLD.
- BILD is responsible for managing the advocacy grant programmes in England and Wales, with a current focus on enabling advocacy support for individuals with PMLD.
- Sense's Capacity to Communicate project provides training and information, harnessing best practice around communication and advocacy issues for people who lack capacity and who have little or no formal communication, including deafblind people.
Working with family carers
- The Foundation for People with Learning Disabilities (FPLD)’s Wellbeing project has highlighted key areas in which information and training for family carers and care staff could enable them to better support people with PMLD.
- BILD's Quality Network involves people with PMLD and their families in reviewing the support they receive from service organisations as part of a process that looks at the outcomes of support on the quality of peoples' lives.
Explaining how the Mental Capacity Act can be used to support people with PMLD
- BILD is ensuring that information about the Mental Capacity Act 2005 is widely available via factsheets, seminars, conferences and events.
- BILD has developed training opportunities for staff to learn how to support people with PMLD in making choices and decisions in line with the Mental Capacity Act 2005.
What you can do
Resources
Read our Communication and behaviour, Advocacy, Mental Capacity and Other resources
