We have divided this section into the following topics. If you click on the section or topic you want you will go straight to the relevant resources. If you want to view all our resources you can just scroll down this page.
- Communication and behaviour
- Day opportunities and inclusion
- Advocacy
- Health
- Mental Capacity
- Moving and Handling
- Education
- Transition
- Person centred planning
- Arts and multi-sensory
- Other
1. Communication and behaviour
Publications:
- Communication and people with the most complex needs: what works and why this is essential – this guide was commissioned by Mencap in partnership with the Department of Health. It forms part of the Valuing People Now work to make sure that people with the most complex needs are included.
- Read Mencap’s guide to communicating with people with profound and multiple learning disabilities
- The Meet the People CD-Rom introduces you to 6 people with profound and multiple learning disabilities (PMLD)
- Foundation for People with Learning Disabilities (FPLD)’s Communication for Person Centred Planning information pack – this was designed to help staff, self advocates, families and friends to make communication better
- BILD factsheet on Communication
- BILD factsheet on Intensive Interaction
- Mencap factsheet on Multimedia Profiling
- Mencap factsheet on Consultation and people with PMLD
- Mencap’s guide to communicating with people with profound and multiple learning disabilities
- Mencap response to Bercow Speech and Language Review – Call for Evidence
- A practical guide to intensive interaction by Nind M & Hewett D (2001) Kidderminster: BILD publications.
- See What I Mean: Guidelines to Aid Understanding of Communication by People with Severe and Profound Learning Disabilities by Grove N., Bunning K., Porter J., Morgan M. (2000). Kidderminster: BILD/Mencap.
- A voice of their own – a toolbox of ideas and information for non-instructed advocacy by Annie Lawton (2006)
- Creative Conversations (DVD) – Communicating with people with profound and multiple learning disabilities by Phoebe Caldwell with Pene Stevens.
- Communication Through Movement: Sherborne Developmental Method – Towards a Broadening Perspective by Cyndi Hall (2005)
- PMLD Journal articles on Communication and Behaviour – see page 5 of journal article list prepared by Sheridan Forster, 2008
- SCIE’s At a glance 37: Challenging behaviour: a guide for family carers on getting the right support for adults
- SCIE’s At a glance 38: Challenging behaviour: a guide for family carers on getting the right support for children
- SCIE’s At a glance 39: Challenging behaviour: a guide for family carers on getting the right support for teenagers
Websites:
- Intensive Interaction – resources and training courses on Intensive Interaction
- Information about Total communication
2. Day Opportunities and Inclusion
Publications:
- The PMLD Network have produced a ‘top tips’ guide for partnership boards about how to include people with profound and multiple learning disabilities.
- PMLD Journal articles on Day Opportunities and Inclusion – see page 11 of journal article list prepared by Sheridan Forster, 2008
Websites:
- Changing Places campaign for toilets with a bench, hoist and plenty of space in public places
3. Advocacy
Publications:
- PMLD Journal articles on Advocacy – see page 2 of journal article list prepared by Sheridan Forster, 2008
Websites:
4. Health
Publications:
- Mencap’s Death by Indifference report – standard and easy read versions
- Mencap’s Treat Me Right! report – standard and easy read versions
- Health and Learning Disability Networks list
- Mencap Evidence to Independent Inquiry into the Healthcare Needs of People with Learning Disabilities
- Eye-care factsheets by SeeAbility
- Feedback from the optometrist about my test form – you will need to scroll down to the ‘Help with your eye test section’ to find this form
- DH (2002) Health action plans what are they? how do you get one? A booklet for people with learning disabilities – This booklet tells you more about Health Action Plans and how to get one.
- Information about postural care – Mencap
- Transition to adulthood for young disabled people with ‘complex health and support needs’ – Joseph Rowntree Findings (1999). Full report by Jenny Morris.
- Transition: Getting it right for young people – Department of Health, Child Health and Maternity Services Branch (2006)
- An example Personal Health Profile is available from Oxleas NHS Trust
- An example Health Action Plan (HAP) is available from Mencap
- PMLD Journal articles on Health – see page 16 of journal article list prepared by Sheridan Forster, 2008
- Young people’s experiences of living with medical technology – research summary report. Dr Sue Kirk, the University of Manchester (2008)
- Profound Intellectual and Multiple Disabilities: Nursing Complex Needs – Jill Pawlyn and Steve Carnaby (Editors)
- Living and dying with dignity: a best practice guide to end-of-life care for people with a learning disability produced by The University of Keele and Mencap
Websites:
- easyhealth.org.uk has lots of health information that is easy to understand
- Brush My Teeth has videos showing how to help people brush their teeth
- Looking after your eyes – advice from SeeAbility
- The Palliative care of People with Learning Disabilities Network (PCPLD Network) seeks to provide training, information and advice to anyone concerned with the palliative and/ or bereavement care needs of people with learning disabilities
- The impact of Mencap’s Death by Indifference campaign
- Visit the UK Health and Learning Disability Network and join to take part in the discussions
- The DisDAT tool is intended to help identify distress in people with severe communication difficulties. Find out more here
5. Mental Capacity
Publications:
- Mental Capacity Act – Gov.uk collection of guidance and support
- Best Interests guidance – The British Psychological Society
- PMLD Journal articles on Mental Capacity – see page 18 of journal article list prepared by Sheridan Forster, 2008
Websites:
- Mental Capacity Act 2005
- Independent Mental Capacity Advocate (IMCA) service
- Office of the Public Guardian
6. Moving and Handling
Publications:
- The Guide to the Handling of People (6th Edition), 2013
- Health and Safety executive guidelines: Moving and Handling in Health and Social Care
7. Education
Publications:
- St Margaret’s School for pupils with profound and multiple learning disabilities (PMLD) – curriculum flyer
- A leaflet about education for students with Rett syndrome at St Margaret’s school
- Information about Carousel Days at St Margaret’s School: whole class multi-sensory experiences
- Including Me: managing complex health needs in schools and early years settings
- Special Educational Needs in England, January 2008 – Statistical First Release from the DCSF
- PMLD Journal articles on Education – see page 12 of journal article list prepared by Sheridan Forster, 2008
Websites:
- The Children’s Trust School (formerly St Margaret’s School) for pupils with profound and multiple learning disabilities (PMLD)
8. Transition
Publications:
- Transition to adulthood for young disabled people with ‘complex health and support needs’ – Joseph Rowntree Findings (1999). Full report by Jenny Morris
- Transition: Getting it right for young people – Department of Health, Child Health and Maternity Services Branch (2006)
- A transition guide for all services: key information for professionals about the transition process for disabled young people – DCSF and Department of Health
- Transition Guides – Council for Disabled Children
- Mencap guide to transition
Websites:
9. Person Centered Planning (PCP)
Publications:
- Communication for Person Centred Planning – this information pack from the Foundation for People with Learning Disabilities is designed to help staff, self advocates, families and friends to make communication better
Websites:
- The Circles Network is a national voluntary organisation based around the key principles of inclusion and person centred planning approaches
- There is more information about person centred planning (PCP) from Helen Sanderson Associates
10. Arts and Multi-Sensory
Publications:
- Mencap’s guide to the arts and people with profound and multiple learning disabilities (PMLD)
- Bag Books – Multi-sensory story packs. Devised for children and adults with complex needs, Bag Books provide sensory stimulation that helps to tell an accompanying story
- PMLD Journal articles on Art and multi-sensory – see page 3 of journal article list prepared by Sheridan Forster, 2008
11. Other
Publications:
- PMLD Network definition of profound and multiple learning disabilities – standard and easy read versions
- PMLD Network leaflet – standard and easy read versions
- PMLD Network submission to Valuing People Now – full response, easy read, summary.
- PMLD Network submission to the Joint Committee on Human Rights (JCHR) inquiry into the human rights of adults with learning disabilities
- Valuing people with profound and multiple learning disabilities (PMLD), PMLD Network 2002
- Meet the People CD-Rom introduces you to 6 people with profound and multiple learning disabilities (PMLD).
- Mencap’s guidelines on gaining consent for showing images and video clips
- Valuing People: what has it meant for people with profound and multiple learning disabilities? by Rachel Fyson, Norah Fry Research Centre, University of Bristol – article in Focus Newsletter, May 2005, issue 42
- Rosengard A, Laing I, Ridley J & Hunter S (2007) A Literature Review on Multiple and Complex Needs – This review evaluates existing research to understand the processes through which people with multiple or complex needs engage, or do not engage, with services to resolve their problems and identifies good practice
- Inclusion Europe (2003) Inclusion of people with severe and profound intellectual disability. This brochure explains more about the needs of people with severe and profound intellectual disability. It wants to help organisations, self-advocates and parents to include them in their work.
- Joint Committee on Human Rights report: A life like any other? Human rights of adults with learning disabilities – standard and easy read
- People with profound and multiple learning disabilities: A review of research about their lives, Dr. Steven Carnaby (2004)
- Multimedia Technology for People with Profound and Multiple Impairment: An Evaluation of a Mencap Pilot Project Using Multimedia Profiling (2005)
- Mencap’s factsheet on sexuality and people with profound and multiple learning disabilities (PMLD)
- PMLD guide: Core and essential service standards
- PMLD – Involve Me – Involve Me aims to increase the involvement of people with PMLD in decision making and consultation. The Involve Me summary booklet and practical guide are a result of the 3-year project, supported by the Renton Foundation and run by Mencap in partnership with the British Institute of Learning Disability (BILD).
- List of PMLD Journal articles prepared by Sheridan Forster, 2008
- Raising our sights: services for adults with profound intellectual and multiple disabilities – report by Professor Jim Mansell, 2010, commissioned by the Department of Health as part of the Valuing People Now delivery plan.
Websites:
- PMLD Link
- British Journal of Learning Disabilities (BJLD)
- Information about inclusive technology which can support people to communicate can be found on the inclusive technology and the CALL Scotland websites