The voice of older people with a learning disability
A lot has been written about older people with learning disabilities and older families and the challenges they face, but rarely has it been written from the point of view of older people themselves or their family carers.
Older people with learning disabilities tell us that they value the opportunity to speak for themselves and it is important that services continue to invest in self advocacy as people age. It is also important to invest in support and advocacy services for older families as they are often isolated and vulnerable and need support to plan for the future (Ward 2012).
Keilty, T and Woodley, K (2013) No Going Back. Forgotten voices from Prudhoe Hospital. Sheffield: Centre for Welfare Reform
Mencap Cymru: Older Voices Project
National AutisticSociety: Autism and Maturity Project
Ward, C. (2012) Perspectives on ageing with a learning disability. York. Joseph Rowntree Foundation. Ref 2689
Blackman, N. and Brooks, M. in collaboration with the GOLD group (2008) Dementia and People with Learning Disabilities: Valuing Relationships. Training pack (including two DVDs made by the GOLD group) available from Respond.
Elichaoff, F (2015) What's it like being you? Growing old(er) with autism spectrum conditions – a scoping study. The European Journal of Social and Behavioural Sciences, Volume XIII, 2015
Growing Older with a Learning Disability: DVD made by the GOLD group. Made as part of the Foundation of People with Learning Disabilities – Growing Older with Learning Disabilities project. www.learningdisabilities.org.uk
also available from Respond.
Towers, C and Glover, C (2015) Talking Together. Facilitating peer support activities to help people with learning disabilities understand about growing older and living with dementia. London: Foundation for People with Learning Disabilities http://bit.ly/1IPoMtt
Organisations and web links
Foundation for People with Learning Disabilities
The GOLD group (group of older people with learning disabilities who have been meeting and working together for over ten years based in London)
Noelle Blackman, c/o Respond. 020 7874 5484
Mencap: Mencap Cymru
National Autistic Society
Real life stories
South Wales travel company trained by learning disability group
Mencap Cymru’s Older Voices group in Blaenau Gwent have been helping bus company Stagecoach in South Wales tackle the problems they face when using public transport. Project members went to the company’s Blackwood depot, and used one of their buses to play out scenarios in which passengers with a learning disability could find themselves.
Funded by Comic Relief, Older Voices brings together over 50s with a learning disability to discuss the issues that matter to them so that they can influence decision making. The project works in four council areas across Wales including Blaenau Gwent, where the group has identified public transport as a campaign priority. They outlined their concerns to Stagecoach in South Wales, who invited them to their depot to speak to staff.
People with a learning disability, particularly older people, may depend on public transport to get around their community. Despite this, they may find the experience intimidating as it can be harder to communicate with staff, or because they are bullied by other passengers. Some people with a learning disability are also wheelchair users and may be put off using public transport if vehicles or stations aren’t accessible.
Stagecoach in South Wales training coordinator Martin Shephard facilitated the day and was supported by Blaenau Gwent council officers Chris Hunt and Huw Lewis.
One of the scenarios involved a person with a learning disability being bullied by another passenger. Another saw a wheelchair user boarding the bus, only to find their space occupied by a non-disabled passenger who refused to move. Each time, drivers and the older people were asked to think about how they would resolve the situation.
Marita Phillps, from the Blaenau Gwent Older Voices group said:
“I know that buses need to get to places quickly but sometimes I can’t get my words out quick enough because of my speech problems. This puts me off using buses as I think that I am holding people up or that I will be laughed at.”
Jaki Southgate, the Older Voices project manager added:
“It’s great to see an influential company like stagecoach showing such enthusiasm to improve their services, and involving people with a learning disability to come up with the solutions. We hope some of the scenarios they’ve seen today will give staff a better idea of the problems people with a learning disability face, and help them enjoy using the buses to get around.
We ordered our lunch from Blackberry catering in Pontllanfraith, a company which employs staff with a learning disability. This was a really good talking point during the day, as it helped show the positive contribution people with a learning disability have to make to our communities.”
What do older people tell us?
The GOLD GROUP is made up of people with a learning a disability who are over 50, they have been meeting together for over 10 years to provide mutual support and to advocate for themselves and others.
They have written and contributed to several publications including Dementia and People with Learning Disabilities Trainer Pack, for more information go to www.respond.org.uk/shop/ and the BILD accessible factsheets on Ageing Well - see www.bild.org.uk/information/ageingwell/news/
You can contact the GOLD group through one of the facilitators, David Thompson on 07950 099600.
When asked at a BILD conference in 2013 about what they had learnt and wanted to pass on to others this is what they said:
“What the group have learnt about getting older with a learning disability is:
• Friendships are very important. Support to keep friendships going takes a lot of time
• It is hard to get extra support when it is needed
• The group have stopped people’s support being reduced
• Services often avoid involving the people who can speak out for older people with learning disabilities
• Some people are on personal budgets, but it is difficult to see how things have changed
• Services are not helping people make plans for the future
It is hard to talk about losses, but sometimes it is good to do this”
Larry: Older people making change happen in their lives
You may be interested in this set of inspirational film clips on You Tube telling the story of Larry O’Bryan. Larry made his move from the UK to Ireland with the support of his family and his circle of support.
This video, cut into two parts, and a section that explains the PATH person centred planning process his support used, tells his story (with Spanish subtitles because it was made by a Spanish filmmaker).
Research: Developing a digital and 'living' archive of learning disability history
The Open University, in collaboration with the University of East London, the University of Leeds, and a number of self-advocacy organisations in England, has been awarded funding from the Arts and Humanities Research Council to develop a digital and 'living' archive of learning disability history.
The project is the culmination of 20 years of pioneering work into the history of learning disability, led by the Open University’s Social History of Learning Disability Research Group.
In that time, people with learning disabilities, their families, academics, self-advocacy organisations and practitioners have been researching and recording fascinating aspects of learning disability history.
But much of this knowledge remains dispersed and difficult to access. The project will address this issue by creating an accessible digital archive that makes it easier for everyone to explore and contribute to the history of learning disability.
The project will involve pulling together what we know from a wide variety of research projects, alongside collecting stories from people with learning disabilities and other stakeholders about their memories and experiences.
We want the archive to be as inclusive as possible and are actively seeking the involvement of people with high support needs, and those who support them, in the project.
For more information, please visit our website:
www.klikin.eu/livingarchive or contact project lead Liz Tilley at firstname.lastname@example.org
Ex-long stay resident awarded Honorary Fellowship of the University of Cumbria
The University of Cumbria has awarded honorary fellowship to Jill Ward for her outstanding contribution to a research project they are running into the experience of residents of the Royal Albert long-stay hospital in Lancaster.
“Jill has given generously of her time to share her life experiences - memories of which have often been painful and shocking. Without these accounts the academic and learning gains would not have been possible and this project continues to be an integral part of the curriculum for students training to work with people with learning difficulties,” said university orator Margaret Weaver, pictured below at the presentation service with Jill and Dr Steve Mee.
Jill Ward was born in the south of England. She moved to Lancaster as a young adult where she was admitted to the long-stay Royal Albert hospital, an institution established for the care and education of children with learning disabilities. Jill was to spend 40 years of her life in the hospital, experiences which she would later share with numerous projects and conferences.
Undoubtedly the highlight of Jill’s story was when she was first contacted by her brother in 2005 – a brother she had not known existed. Since the initial contact was made Jill has been reunited with two brothers, a sister and their extended families. This has had a significant impact on Jill’s life and she speaks of her family and their visits with pride.
Jill has now moved to a house where there is staff presence 24 hours a day, due to her recent difficulties with mobility. Having said this, Jill remains actively involved with her community, attending line dancing and church activities whilst remaining in contact with her many friends and family.
Her outstanding contribution to the academic development of the understanding of the social history of learning disability is a shining example of Jill’s giving nature. She truly is, as Margaret Weaver described her, “a lady who has lived her life to the full.”
Read the full University of Cumbria citation >
Gayle Newberry’s research – what do older people with a learning disability understand about the ageing process
Gayle wrote to us about research that she carried out with older people with learning disabilities as part of her doctorate in clinical psychology. She told us:
“Not enough is currently known about how people with learning disabilities experience and understand the ageing process. This is particularly important as the population of older people with learning disabilities is growing due to increased life expectancy.
This study aims to fill this gap in the literature by exploring how people with learning disabilities experience and make sense of the ageing process and old age.
Seven people with learning disabilities aged 60 or over were interviewed, and their accounts were analysed.
- The key themes arising from the group analysis were:
- The quality of relationships is central to enjoyment of life
- The importance of affection and companionship and distress at lack of closeness
- Anxiety about ability to satisfy others;
- Needing a sense of purpose; and
- Making sense of getting older, including reactions to changes with age, life review and looking to the future.
This study demonstrates that some older people with learning disabilities can engage in a process of life review and learning disability services could play a useful role in facilitating this process. Understanding of the ageing process varied between participants, and tended towards a negative, stereotypical view of ageing.
The findings suggest that people with learning disabilities could benefit from education on the ageing process to aid them in making sense of the changes they experience as they get older.”
Download a summary of the research >