18 March 2010
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Many carers with a learning disability unknown to services
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Charity publishes new resources to help families and professionals
According to a new policy briefing published today by a leading charity, services need to better identify and support the thousands of people with a learning disability caring for elderly relatives. While the exact numbers are unknown, it is been estimated that up to 29,000* people with a learning disability live with an older family member over the age of 70.
In
Mutual Caring, the Foundation for People with Learning Disabilities says that because more people are living longer, increasing numbers of people with a learning disability are now providing ongoing care to older family relatives (usually a parent). Responsibilities can include doing the cooking, cleaning, shopping, and keeping them company at home.
But the Foundation for People with Learning Disabilities asserts that those caring for elderly parents should be able to access more support from services for help with practical tasks such as the jobs around the home or claiming essential benefits. People with a learning disability in this situation often find themselves isolated and have less time to make friends and engage in social activities, because they are worried about leaving an elderly relative at home alone.
Many carers unknown to services
The charity reveals that some mutual caring families remain hidden because they fall between services designed to support either people with a learning disability, older people or carers. Evidence also shows that the three services do not always work together to support these families even when they are recognised. The result is that they often receive little or no care.
The Foundation for People with Learning Disabilities also says that the problem is compounded by the fact that many mutual caring families do not ask for help from services unless a crisis happens, often because they do not want to be dependent on services or fear that they will be split up.
Progress can still be made in face of cuts
Whilst increased pressures on social care budgets are likely to hamper service provision, the charity believes that progress can still be made. It says that services could work more closely together and develop protocols to set out clear lines of responsibility to meet the interdependent support needs of the older carer and the person with a learning disability.
Mutual Caring makes a number of recommendations for commissioners and care managers, including ensuring that professionals develop effective person centred plans and offer personalised budgets – existing tools that would support families to maintain their independence. The Foundation also asserts that work needs to be done nationally and locally to identify families where mutual caring is taking place to understand the scale of the issue.
Molly Mattingly, Assistant Director at the Foundation for People with Learning Disabilities, said:
"For anyone, caring for a relative can be stressful, but it’s even more so for a person with a learning disability. Many people get immense satisfaction from the responsibility of providing care for their older family members but they may not recognise the point at which the strain of providing care becomes too much and when some outside help would be appropriate. It is vital that people with a learning disability are adequately supported by services in their role as carers. They should be helped to plan for the future so that they can cope should something happen to their parent - this does not mean living separately before they are ready."
Cally Ward from Valuing People Now (a three year strategy for people with learning disabilities), said:
"It has become increasingly obvious that caring roles are changing within many older families as people with learning disabilities find themselves offering emotional and practical support to their ageing parent. Valuing People Now has called for greater support for people with learning disabilities in a caring role and more support for older families, and has commissioned work to help local services make this happen."
Pat O'Shea from Bromley Mencap, said:
"Bromley Mencap are supporting more elderly carers with learning disabled sons and daughters living in a mutually caring situation. Cuts in social services coupled with longer life expectation for both these groups means more people are reliant upon support from voluntary organisations such as Bromley Mencap in many aspects of their lives."
NEW resources for families and professionals
A range of
helpful materials have been produced by the Foundation for People with Learning Disabilities and are available to download alongside the
Mutual Caring policy briefing. A limited number of hard copies are available. Telephone 020 7803 1101.
Two guides for frontline staff and services.
Supporting Mutual Caring explains how to best support and respond to the needs of older families.
Circles of Support and Mutual Caring advises on how to develop circles of support so that people with a learning disability can get the help they need from a wider group of people in the local community.
A pack of three Growing Older Together booklets for families.
Supporting You as an Older Family Carer gives advice about accessing support and planning for the future.
Supporting You and Your Family as You Grow Older Together for people with a learning disability.
Supporting You to Support Your Family is for relatives and close friends of older families that include a person with a learning disability.
The charity has also produced a
Mutual Caring DVD (£5) that shows four films: Being a Carer, Carer’s Assessment, Person Centred Planning, and Peer and Group Support. All films feature families where mutual caring is taking place. Telephone 020 7803 1101 to order.
The Mutual Caring Project
The
Mutual Caring Project was set up to promote recognition of - and develop improved service provision for - older families, where the balance of the caring relationship between the long-term family carer (often a parent) and the person with a learning disability (normally an adult son or daughter) has changed. The project worked with five pilot sites in Shropshire, Norfolk, Bromley, Leeds and Barnsley. The work was funded by Lloyds TSB, the Valuing People Support Team and the Calouste Gulbenkian Foundation.
Ends
*Housing Timebomb report, June 2002,
Mencap.
Notes to editors
For more information or to request a copy of
Mutual Caring, please contact the press office team on 020 7803 1130/28 or email
sloveland@mhf.org.uk. Family case studies as well as staff working at some of the pilot sites are available for interview.
The Foundation for People with Learning Disabilities promotes the rights, quality of life and opportunities of people with learning disabilities and their families.
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