Mencap launches ground-breaking new resource for people with profound and multiple learning disabilities

Tuesday 27 September 2011

Mencap has launched a new toolkit to give a voice to one of society’s most excluded groups.

A new toolkit to give a voice to one of society’s most excluded groups has been launched by Mencap.

The new Involve Me resource pack aims to breakdown some of the barriers faced by people with profound and multiple learning disabilities (PMLD) and to get them more involved in the decisions that affect their everyday lives.  

It targets everyone involved with people with PMLD, from their families and carers to commissioners of services, and provides a range of resources that will help them to become involved in a range of decisions that affect them, such as what to wear, how they spend their time and where they live.

Involve Me consists of a short booklet which summarises the project and a practical guide with an interactive DVD and resources. There is also an independent evaluation, which has recommendations for everyone, including government, the Care Quality Commission, commissioners and support staff.

Involve Me shows how creative approaches such as sharing stories and peer advocacy can be used to involve people in decision-making.

It is the result of a three-year project, involving four services. Each looked at how a different approach could be used to involve people with PMLD in decision-making and consultation. The project is supported by the Renton Foundation and is being run by learning disability charity Mencap in partnership with the British Institute of Learning Disabilities.

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 profound and multiple learning disabilities, said: "People with PMLD are some of the most excluded people 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.”

The toolkit stresses the need to get to know the person with PMLD well, not to make assumptions about the person, to learn from what the person tells them and act on what is learnt.

It was launched at City Hall in London on 23 September, where one of the keynote speakers was Caroline Stanley from the Renton Foundation.   

The Involve Me resource will be available at no cost for a limited period.

Email: involveme@mencap.org.uk or visit www.mencap.org.uk/involveme

Notes to editors

For more information and to speak to a Mencap spokesperson contact 0207 696 5414 or email media@mencap.org.uk

About PMLD

People with profound and multiple learning disabilities:

• have more than one disability
• have a profound learning disability
• have great difficulty communicating
• need high levels of support
• may have additional sensory or physical disabilities
• complex health needs or mental health difficulties
• may have behaviours that challenge us

(PMLD Network short definition, 2005)

There are just over 16,000 people* with PMLD in England.

About Involve Me

Involve Me is a three-year project which looks at how to creatively involve people with profound and multiple learning difficulties into decision-making.

It started in January 2009 and the resources from the project are to be launched in September 20011, with targeted dissemination until December 2011 and wider dissemination beyond that.

There was project activity between five and 11 months at four different sites - The Coronation Centre, a local authority day centre in Ellesmere Port, used music, art, movement and dance to communicate with people with PMLD; The Rix Centre, a multimedia advocacy centre based at the University of East London,  used photography, video and computers;  Hammersmith and Fulham Mencap, set up a peer advocacy service and Turning Point, Salisbury, allowed people with PMLD to share their stories in group settings by using sounds and objects.

Its steering group was made up of:- Beverley Dawkins OBE, national officer for profound and multiple learning disabilities, Mencap (Chair); Louisa Whait, national project manager, Mencap; Keith Smith, CEO, BILD; Sue Thurman, independent consultant and Rachel Fyson, associate professor, University of Nottingham.

*(E. Emerson, 2009, Estimating future numbers of adults with profound and multiple learning disabilities in England, Lancaster Centre of Disability Research).

About Mencap

There are 1.5 million people with a learning disability in the UK. Mencap works to support people with a learning disability and their families and carers by fighting to change laws and improve services and access to education, employment and leisure facilities. Mencap supports thousands of people with a learning disability to live their lives the way they want.

We are also one of the largest providers of services, information and advice for people with a learning disability across England, Northern Ireland and Wales.  People with a learning disability and their carers can find out more about our services by calling Mencap Direct on 0300 333 111 or by visiting www.mencap.org.uk

About learning disability

A learning disability is caused by the way the brain develops before, during or shortly after birth. It is always lifelong and affects someone's intellectual and social development. It used to be called mental handicap but this term is outdated and offensive. Learning disability is NOT a mental illness.

The term learning difficulty is often incorrectly used interchangeably with learning disability.