Mencap Cymru’s Older Voices project is helping older people with a learning disability to fight for their rights
“I lived with my mother for a very long time, and I looked after her when my father passed away,” says David Raymond Jones (see below). “But when she got ill four years ago, I had to move. Now, I live with another man in a supported flat and I am happy. I’ve been lucky, but other people find it difficult to get what I have.”
Thanks to better healthcare, the number of older people with a learning disability – and indeed all older people – is increasing. However, as David suggests, often the treatment they receive is less than impressive.
Many older people with a learning disability are unknown to social services. The strategy Valuing People estimated that at least 25% of people with a learning disability living with family carers over the age of 70 have no contact with services.
One reason for this is mistrust. Some were forced into institutions by social services, while others stayed with their parents, who are now ageing. But
because their parents are sceptical about the help available and hadn’t expected their children to live very long, they often make no plans for the future. So, when they pass away, their sons and daughters can end up in inappropriate care situations.
“It’s like they’ve been forgotten about,” says Jaki Southgate, project manager of the Older Voices project for older people with a learning disability in Wales. “They say that people think all they want is to watch TV and knit. There’s no person-centred planning.”
On top of this, older people with a learning disability face discrimination and often hate crime. “They are more vulnerable and fear going out,” says Jaki, “not just because they are older, but because they also have a learning disability. Their independence suffers.”
Plus, many find it difficult to relate to younger people and vice versa. They don’t trust the government, because of funding cuts, and are confused by the political system.
Tackling the problems
In Wales, Older Voices aims to address this. It was set up by Mencap Cymru last April in Blaenau Gwent, Rhondda Cynon Taf, Swansea and Anglesey.
The three-year project, funded by Comic Relief, will work with 17 people with a learning disability over the age of 50 in each area. Two will become trainers on the project and 15 will become beneficiaries.
Older Voices has two main aims. The first is to make the older people aware of their rights and give them the confidence and skills to change things. This will be achieved through workshops, run by Jaki and the trainers.
While those who need it will receive additional support, for most there will be one workshop per month, with three key stages. “The first stage concentrates on the different levels of government and who does what,” explains Jaki. “The second is on how to contact that person and put a campaign together. The third is doing the campaign.”
A person-centred plan will be drawn up for each person, “so they can make the changes themselves, with a little bit of help,” says Jaki. “We are a self-help project really.”
The aim is to encourage the beneficiaries to participate in older people’s forums and campaigning groups. “There are loads of forums, but the representation of people with a learning disability is minimal. We want to see people with a learning disability on forums like Age Cymru.”
The second aspect of the project is to raise awareness of the issues that older people with a learning disability face and get older people’s organisations to include them in their decision making.
Jaki will set up two steering groups to encourage joint working with relevant organisations. “We are looking at a national steering group and local steering groups,” she explains, “possibly with some of the beneficiaries and the trainers on the local steering groups.
“The national steering group would be organisations that get together and discuss our mutual issues and how to overcome barriers – like Age Cymru, Learning Disability Wales and the Welsh health boards,” she says.
So what would Jaki like the project to achieve? “I would like to see local councillors who are over 50 with a learning disability getting things sorted out for other people in the community,” she says. “That would be my dream.”
David is an Older Voices trainer in Rhondda Cynon Taf. “I really like working in a team and doing all the work we do,” says David. “At the workshops, I am going to be talking to the group about the rights of older people. We want to show other people how to promote their rights.
“I enjoyed living with my mother and where I live now. But a lot of people went to institutions. It’s not very nice that people went there. And now some people are being bullied. It’s good for them to come and talk about their problems.”