The number of people with a learning disability who care for parents, partners and children is rising. But are they receiving more recognition and support?
Until recently, people with a learning disability were seen simply as ‘service users' – a group to be led through life by service providers. But with individual budgets and personal-centred plans came the realisation that people with a learning disability, like everyone else, take on many roles. Often they are carers themselves.
The number of carers who have a learning disability is growing. In 2001, the Valuing People white paper estimated that a third of people with a learning disability who live in the family home are living with a family member aged 70 or over. Mencap said that this works out at 29,000 people with a learning disability who, in many cases, care for their elderly relative.
The government's current focus on personalisation means that more people with a learning disability are living in their own homes. Valuing People committed to close the last remaining NHS residential campuses by 2010.
This was backed by the £1.4 million Supporting People programme to support transition from institutional living into more independent living options. Along with the increased acceptance of people with a learning disability forming meaningful relationships, this has led to an increase in the number of people who live with a partner who needs care and support.
Issues surrounding people with a learning disability who become parents have been highlighted in the media recently (see page 9). Without the right support, some parents with a learning disability have had their children taken into care. In 2005, the first national survey of adults with a learning disability in England found that 1 in 15 of them had children.
These groups all add up to a rising population of carers with their own particular needs.
For a long time carers with a learning disability were largely invisible. Carers' assessments can be difficult to understand, so few have bothered to complete them. In addition, the ageing population means that the government's carer policies largely focus on the needs of older carers. Often though, people with a learning disability and their older parents are providing mutual care.
Dalia Magrill is project co-ordinator for the Mutual Caring Project, run by the Foundation for People with Learning Disabilities. She says that mutual carers remain hidden because they fall between services designed to support either people with a learning disability, older people or carers. "It can be a really hard concept for professionals to get their heads around," she says.
Because caring for a family member is seen as the norm, Dalia says that people don't always seek support. "People with a learning disability may have been supported all their lives and now want to care for their elderly relative," she explains. "And it can be difficult for older family carers to be open about the amount of support they need."
However, thanks to a range of recent initiatives people with a learning disability are beginning to be acknowledged as part of the carer community.
Self-advocates Richard West and Eve Rank are among those fighting for the rights of this group. The pair set up and run the Who Cares for Us? campaign, which calls for increased recognition of carers with a learning disability.
"I was speaking to Eve about how stressful it was trying to get services for my partner," recalls Richard. "She said that she found the same for her partner." For Eve and Richard, it was the first time they had thought of themselves with the label ‘carer'.
Richard cares for his partner and arranges her healthcare and other support services. Recent cuts to services have added to the pressure he faces. "Not so long ago Tracey would have had a five-day-a-week day centre placement; now she gets two hours a week. The rest of the time I have to support her."
Assisted by Inspired Services, Who Cares for Us? began to influence carer policy at the highest levels. Richard and Eve attended conferences and used Eve's contacts through her former role as commissioner at the Disability Rights Commission. The hard work eventually paid off, resulting in a national group on carers with a learning disability within the Valuing People Support Team's Family Carer Programme.
The right assessment
Cally Ward is team lead for the programme. She says that the invisibility of carers with a learning disability leads to a lack of support – her team is trying to change this.
A big problem is that so many carers with a learning disability are unknown to the team and to local authorities. "Only recently, with the national carers' strategy and more input from GPs, have we identified carers," she says.
Last January, carers with a learning disability were included as a priority group in the Valuing People Now delivery plan. Cally says that it has taken ten years of lobbying to achieve this level of recognition. The knock-on effect is a welcome increase in resources and support networks.
An accessible guide to the carers' assessment is helping people to get services they are entitled to. "These have been very successful," says Cally. "People have taken them into their local authorities, which have taken them up across the board." Incentives such as this are also being pushed by the National Valuing Families Forum, which feeds into the government's Learning Disability Task Force.