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

People with learning disabilities face many barriers in being able to complain about the services they receive. The Hearing from the Seldom Heard project funded by the Department of Health and undertaken by BILD aimed to look at the how to overcome barriers and create listening cultures within organisations to hear from those who are seldom heard. The project has resulted in a resource pack.

Mencap and BILD’s Involve Me project will identify and showcase creative ways of involving people with profound and multiple learning disabilities (PMLD) in consultation and decision-making processes.

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.

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 3-year Capacity to Communicate project provided 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. The project has produced a number of resources which can be downloaded. Sense has been given a short extension to the project (to December 2009) to adapt and develop the training course for use by health and social care staff.

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.

BILD is ensuring that information about the Mental Capacity Act 2005 is widely available via factsheets, seminars, conferences and events.

The 'I'm creative too' project enables children and young people with complex, profound and severe learning disabilities to explore and express ideas and choices in a safe environment using art, movement, music and drama. The project aims to develop mechanisms for listening and responding to children and young people with complex, profound and severe learning disabilities. For more information contact Disability Inclusion Community Education (D.I.C.E) who are running the project.
disabilityinclusiondice@fsmail.net