More people with learning disabilities are finding they have been transformed. From being labelled as “cared for” they have become carers themselves. Whether this means coping with ageing parents or living with partners with disabilities, this new type of carer is isolated, unsupported and under a great deal of stress.
But two seasoned campaigners who found themselves in that situation have decided to do something about it. Eve Rank and Richard West first met in 2000 as part of a team of service users contributing to the Valuing People white paper. Circumstances have changed for both of them since.
While chatting at a conference last year, Rank and West made the connection. “The time we first met, neither of us were carers,” says Rank. “He was saying how stressful it was getting Tracey [Richard’s partner] the right support, and then I realised Richard, your story is a bit similar to mine. And then we realised what we’re doing is being carers.”
The Disability Rights Commission (DRC) estimates that there are 70,000 people with learning disabilities who live with parents older than 70. And as more people are choosing to live independently and set up home with partners who may need support, confusion over roles and red tape is creating a forgotten group of carers.
Rank and West hatched a plan to bypass the middlemen and take the issue straight to the Department of Health minister responsible for care services at a seminar. Rank explains: “We decided to ask Ivan Lewis about his commitment to carers with a learning disability. At meetings professionals were saying ‘you can’t ask that, there isn’t time’.
“So we decided rather than sit on the back row, we’ll sit on the front row. One would sit on one side, and one on the other. We just stuck our hands up so the first one that got him would ask the question.”
The pair successfully caught Lewis’s attention, and he advised them how to proceed. The Who Cares for Us? Campaign was born, with help from social care advocate Andrew Holman. “We realised we couldn’t set this project up without the support worker, so we bullied him to support us,” Rank says, laughing. “He told us we were bolshie, and that’s how to get things done.”
A crucial part of the campaign was the creation of a national network for people with learning disabilities caring for partners or ageing parents.
Cally Ward, team leader for family carers at the Valuing People Support Team, which facilitates the network, says: “The network is to bring people together to share information about what is happening across the country and support one another’s initiatives and campaigns.”
The group set up to oversee the network, which Rank and West attend, also has a wider role in developing direct services. On the older parents’ front it is helping to fund the Mutual Caring Project, run by the Foundation for People with Learning Disabilities. The philosophy is that, without the teamwork and support both the older family carer and the person with learning disabilities give each other, neither would be able to remain living independently.
Pilot projects set up in Barnsley, Leeds, Norfolk and Shropshire are targeting a small number of older families in the first instance. As well as providing accessible information and help with carers’ assessments, local co-ordinators are getting health services in on the act, advising on medication, moving and handling and understanding dementia. These projects are the first steps in dissolving the unhelpful boundaries between carer and cared-for.
However, Ward is aware that not enough is known about their target groups. She says: “The fact that more people with learning disabilities are marrying or living with partners of their choice is something to celebrate. Now they just need to get the right support to live their lives. To begin to quantify those who are caring for a partner there needs to be much better joint working between self-advocacy groups and local carers’ organisations.”
It seems likely that once the network gets going, thousands of people will be properly recognised as carers for the first time. “We came up with a list of questions – basic things like whether they collected medication,” says Rank. “It’s a piece of work we can build on. “One of the questions was ‘is your life your own?’, which is important because if you are a carer your life isn’t your own.”
They are both busy people – Rank is a DRC commissioner and she and West regularly attend meetings and conferences, as well as support their partners and cope with bureaucratic services.
But her and West’s efforts are already yielding results. Ivan Lewis recently admitted in public for the first time that carers with learning disabilities were an important group. Later this year they will be speaking at an all-party parliamentary group about the issue and give evidence on human rights.
Rank is clearly proud of their achievements so far: “From November to now, we’ve done a lot of work we didn’t realise. Just hearing the minister saying it’s really important – six months ago he wouldn’t have even thought of it. We’re so dedicated to this, if we’ve got to have our bums on seats on front rows, we will do.”
‘I have diabetes so caring tires you out even more’
Richard West, Carer and partner
Richard West is a carer who shares a flat with his partner, Tracey, who has learning disabilities. He says it is difficult to get the recognition and support they need – even an assessment – but all he wants is the same rights as other carers. West describes himself as a black British deaf person with a learning disability.
“Being a carer is very tiring. I’ve got diabetes so it tires you out even more. When it comes to two or three o’clock in the afternoon I could feel very tired. It can be so stressful that when you get up in the morning, you don’t know where you are.
“If I go away, she gets upset. If anything goes wrong with her, I have to deal with it. If she’s upset in the daytime I have to deal with it. On quite a few times she’s been really upset.”
Tracey often comes along to the conferences and events West attends. But sometimes they only get help due to “friends in high places” who can provide a support worker. West also recognises the importance of support from friends, family, in-laws and neighbours.
“She can come and give leaflets out, but if she wants to do something else I can’t just leave her on her own, I’ve got to go with her. If I’ve got to go to a meeting or a conference, I have to sort it out.”
West manages to get what he needs by pushing for it, a natural trait for some, but most people with learning disabilities are scared to do this. Carers’ forums around the country need to reach out to people with learning disabilities, he says.
“It’s still got a long way to go to be recognised as a group. There are some carers with learning disability from an ethnic minority background whose first language is not English. That needs to be taken into account as well.”
This article appeared in the 7 June issue under the headline “When carers need caring”