Mental health & people with learning disabilities
LAST UPDATED 28/06/13
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This info pack has been put together with the help of The Judith Trust which works to promote best practice and improve the quality of life of people who have both learning disabilities and mental health problems.
Mental ill-health affects around 25% of people in their lifetime, and up to 40% of people with learning disabilities. Mental illness can affect the way a person thinks, feels and behaves. It can affect their relationships, their work, their day-to-day functioning and their quality of life.
Research suggests that people with learning disabilities have an increased likelihood of developing mental ill-health. This could be due to those with a learning disability being more vulnerable to various factors – social, psychological, emotional and physical difficulties.
Mental health problems can occur at any time in a person's life, and symptoms can vary in severity. For example, someone with a learning disability may develop mild depression following a bereavement, and experience feelings of sadness, but still continue their usual activities. Meanwhile another person suffering a bereavement may have difficulty functioning, becoming withdrawn, not eating or sleeping, and may need extra care and support.
Mental illness may occur without any catalyst and may last a life-time or just for a few weeks. With support, people with learning disabilities and mental health problems can lead full and productive lives.
Impact of mental illness
Many people who have both learning disabilities and mental health problems experience stigma, prejudice and discrimination. The impact of a mental illness on top of learning disability can also affect family, friends and carers. It can be doubly challenging to care for and support someone with learning disabilities and a mental health problem.
Factors affecting mental health
Lots of factors make it more likely that a person, with or without learning disabilities, will develop mental health problems. People with learning disabilities are more likely to experience all these risk factors.
• Medical and biological reasons: sometimes the underlying cause of the learning disability may also be linked to mental health problems. People with long-term medical conditions, such as epilepsy or diabetes are also at increased risk of experiencing mental health problems.
• Social factors: people with learning disabilities may have a smaller social circle and fewer close social relationships. Often they do not choose who to be friends with, but are placed in a group according to their needs.
• Emotional and psychological factors: people with learning disabilities may struggle to understand and express their feeling and emotions.
• Lack of opportunities: people with learning disabilities have fewer opportunities in life, in all areas such as education, sport, leisure, hobbies, travel and employment, as well as social opportunities outlined above.
• Lack of control over their lives: people with learning disabilities are often not appropriately supported to make meaningful choices, to maximise their independence and to achieve their potential.
• Gender differences: depression, eating disorders and anxiety are more common in females, while post-traumatic stress disorder and schizophrenia occur more often in males.
Early identification
Identifying mental health problems in a person with a learning disability can be challenging. Many of the signs and symptoms are common in people with learning disabilities or ASC (Autistic Spectrum Conditions), so how do you know if there is also a mental health problem?
Identification involves noticing changes to a person’s usual patterns of behaviour, so it’s important to know what is usual for your child, or the person you support. Look out for one or more of the following changes:
• Expressing sadness verbally, looking sad or crying
• Expressing anger, verbally or through their behaviour
• Expressing fear, or looking frightened or concerned
• Expressing confusion or looking confused
• Repetitive or unusual questions
• Repetitive or unusual behaviours
• Increased anxiety
• Disturbed sleep patterns, or sleeping more than usual
• Eating more or less than usual, and corresponding weight changes
• Less concern with personal hygiene and presentation
• Increased physical or verbal aggression
• Self-harming behaviours
• Withdrawal from usual activities and interests
• Withdrawal from relationships with friends and family
• Reduced ability to focus
• Loss of skills
• Reduced ability to follow instructions or engage in conversation
• Restless and fidgeting
• Frequent tummy aches / headaches
If you are concerned that someone with learning disabilities might have a mental health problem, your GP is the first point of contact. The GP can then refer you to CAMHS (Child and Adolescent Mental Health Services) or AMHS (Adult Mental Health Services). See below for other support organisations that may also be helpful.
Some of these services have specific professionals trained to work with people with learning disabilities. All mental health services are required to offer appropriate services to people with learning disabilities, making reasonable adjustments to ensure full accessibility.
It may be helpful to keep written records to show the GP or other professionals to demonstrate changes.
Treatment and support
Medication is effective for some people. Medication should only be offered alongside other interventions, not as the only option.
Talking therapies and creative therapies, such as art or music therapy, may also be helpful. These may be 1:1, in family groups or in peer groups, or a combination of these.
Friendship, support, opportunities and inclusion are central to improving and maintaining mental well-being.
Coping strategies
• Deep breathing
• Counting to 10, or down from 10
• Allowing the child/adult to leave the situation, for example by showing a card that tells people they want to leave
• Talking about what has happened and how the person is feeling
• Expressing feelings about difficult events through drawing, colouring, music or other creative methods
• Develop Social Stories about how to deal with challenging situations
• Many people with learning disabilities have their own unique ways of coping; find out what works for the individual
• Carers also need to develop coping strategies – caring for someone with both mental health problems and learning disabilities is challenging and stressful, and can also affect the mental health of the carer.
Top tips
Acknowledge feelings
Acknowledge and label feelings – if a child or adult cries, for example, tell them you understand they are sad and back this up with any communication aids you are using.
Express emotions
Encourage people to express and release their emotions in ways that suit them– through art, music, movement and so on.
Develop skills
Support children to develop the skills to understand and express their emotions from an early age, using pictures, signs and other communication aids. You can get support and advice on this from speech therapists and early intervention teams. Schools should also support this important area of learning.
Channel energy
If people express their feelings in physically aggressive ways try to channel this energy appropriately – for example through sport or banging a drum.
Accessible information
Give people accessible information about their diagnosis or treatment, and involve them in decision making – there is a list below of accessible resources related to mental health. Local services should also provide accessible information.
Diagnosis & treatment
When supporting someone through diagnosis and treatment, always involve them in understanding what is happening, in a way which meets their level of understanding
Royal College of Psychiatrists
The Royal College of Psychiatrists have accessible information about mental health conditions and treatment options.
Monitor medication
Ensure any medication is closely monitored. See also our tips section on administering meds
Keep records
Maintain records so that you can track changes, for better or worse, to help evaluate how the treatment and support is helping.
Don't discourage self talk
Self talk can help a person with learning disabilities process their feelings effectively, so try not to discourage it.
Support organisations
The Judith Trust
Established in 1997, the Judith Trust focuses its work on the problems faced by people who have both a learning disability and mental ill-health. www.judithtrust.org.uk
The Estia Centre
The Estia Centre is a training, research and development resource for those who support adults with learning disabilities and additional mental health needs. www.estiacentre.org
National Autistic Society
The National Autistic Society provides a helpline and advice on issues about mental health for people with autism spectrum disorders, their families and professionals. www.autism.org.uk
The Challenging Behaviour Foundation
The Challenging Behaviour Foundation has useful information and advice about mental health issues, including a downloadable information sheet, Mental health problems in people with learning disabilities, by Dr Steve Moss BSc MSc Phd. www.challengingbehaviour.org.uk
Mental Health Matters
Mental Health Matters (MHM) is a national organisation supporting people with learning disabilities who have mental health needs. They provide support with partner organisations to help people move on to independent living whenever possible. www.mentalhealthmatters.com
Institute of Psychotherapy and Disability
The Institute of Pscyhotherapy and Disability exists to develop, accredit and regulate psychotherapists who work with people with disabilities. As an organisation, its aim is to promote best practice in the training of professionals working in the field. www.instpd.org.uk/aims.html
Respond
Respond works with children and adults with learning disabilities who have experienced abuse or trauma, as well as those who have abused others, through psychotherapy, advocacy, campaigning and other support. www.respond.org.uk
Children & young people
Foundation for People with Learning Disabilities
The Mental Health of Children And Adolescents with Learning Disabilities in Britain is a report by the FPLD on the experiences of over 18,000 children aged between 5 & 15 years old. Mental Health of Children
Count Us In: addressing the mental health needs of young people with learning disabilities is the result of a research project conducted by FPLD throughout the UK in 2001. Count Us In
Friends for Life – Learning Disabilities aims to enable the internationally recognised Friends for Life programme to be accessible for children and young people with learning disabilities. Friends for Life
Partnership for Children – Zippy's Friends
Zippy's Friends is a programme that helps young children to develop coping and social skills. It is currently running in primary schools and kindergartens in 28 countries. Zippy's Friends for Special Needs is a new resource now available for schools. Zippy's Friends
Young Minds
Young Minds is a charity committed to improving the emotional wellbeing and mental health of children and young people. They provide sources of information and support for parents and carers of children with learning disabilities and autism too. www.youngminds.org.uk
Accessible resources
The Royal College of Psychiatrists
The Royal College of Psychiatrists provides accessible information on health conditions, medication and mental well-being, including Books Beyond Words, which are a series of accessible books on topics including bereavement and mental health. Books beyond words
All about feeling down
A booklet for young people with learning disabilities, published by the Foundation for People with Learning Disabilities.
All about feeling down
Coping with stress
Published by Bild (British Institute of Learning Disabilities) Coping with Stress is written by health professionals working with groups of people with learning disabilities. Coping with stress
Zippy's friends
A mental well-being resource primarily for schools, but with information and ideas for parents too. Zippy's Friends
CHANGE image gallery
Over 6,000 images which can be used to make accessible information for people with learning disabilities. The images, which can be easily inserted into Word documents, also include resources on mental health and emotional needs.Image gallery
CHANGE – Bereavement Resources
We are Living Well But Dying Matters is a DVD by CHANGE which encourages people with learning disabilities to express their thoughts and questions about death and dying. CHANGE DVD
Macmillan – End of Life Care
Macmillan provides a number of accessible resources for people with learning disabilities, including booklets on palliative care and bereavement. Macmillan
Resources for Professionals
RCPsych Publications
Developing Mental Health Services for Children and Adolescents with Learning Disabilities: A Toolkit for Clinicians edited by Sarah Bernard and Jeremy Turk. Toolkit for Clinicians
National Development Team for Inclusion
Reasonably Adjusted? Mental Health Services and Support for People with Autism and People with Learning Disabilities Reasonably Adjusted?
Bild (British Institute for People with Learning Disabilities)
Useful resources for professionals working with people with learning disabilities who are suffering with depression or mental health problems. Bild resources
Improving Access to Psychological Therapies (IAPT)
IAPT is an NHS programme rolling out services across England offering interventions approved by the National Institute of Health and Clinical Excellence for treating people with depression and anxiety disorders. IAPT
National Autistic Society
Mental Health and Autism: A guide for child and adolescent mental health practitioners www.autism.org.uk
The Estia Centre
The Estia Centre works in close collaboration with clinical services to improve the care of people with learning disabilities, especially those with additional mental health and challenging needs. Estia Centre
Mental Health Nursing of Adults with Learning Disabilities
A publication by the Royal College of Nursing, designed to ensure that the mental health needs of people with learning disabilities are recognised and met. www.rcn.org.uk
