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Introduction

Carer or caregiver is the terminology in most English-speaking countries for an unpaid spouse, relative, friend or neighbor of a disabled person or child who assists with activities of daily living and assists those unable to fully take care of themselves. While the terms "caregiver" or "careworker" may also apply to many paid providers of services, the words "voluntary caregiver" are broadly used in American English to describe those individuals other than parents whose contributions are normally not compensated as employment. The term used by most international organisations and agencies is, more simply "carer|carers".

The services of one or more carers can be invaluable in helping the person with a disability live in their own home and/or with their own family, limiting the need and costs of professional home care services, or relocation to group home, assisted living, nursing home, or hospice care settings. Carer|caregiver training is sometimes offered by professional agencies to share options and methods for voluntary carer|caregiver to use.

As medical breakthroughs have changed some health problems from terminal to chronic, and life spans have gradually increased, and as average age of the population becomes older, the role of carer/caregiver has been increasingly recognized as an important one, both functionally and economically. Many organizations which provide support for persons with disabilities have developed various forms of support for carers/caregivers as well.

International organisations

On February 27, 2004, the International Alliance of Carers Organizations (IACO) was launched by family caregiving organizations from Australia, the UK, Sweden, the Netherlands, and the US. The mission of the organization is three-fold:

  • to increase visibility of family caregiving across the lifespan as an international issue;
  • to promote the sharing of best practices in caregiving programs between countries; and
  • to encourage and provide assistance to countries interested in developing family carer organizations.

IACO is headquartered in London. Initial IACO projects included promotion of a United Nations Day for Carers and a presentation on the IACO as part of a half-day workshop at the International Federation on Aging conference in Singapore on August 4, 2004. National family carer organizations in all countries are encouraged to join the alliance.

Carers in the USA

According to the United States National Family Caregivers Association, "more than 50 million people provide care for a chronically ill, disabled or aged family member or friend during any given year." [1]. The vast majority of these are voluntary caregivers.

Carers in the UK

According the Carers UK, and based on the 2001 census around six million people in the UK provide care on an unpaid basis for a relative, friend or neighbour in need of support due to old age, disability, frailty or illness. The population of carers is dynamic: at least a third of all people will fulfil a caring role at some point in their lives.

At least half of all carers are in full or part time employment and some care for more than one person. Carers save the UK economy an estimated £57bn a year, and economic considerations form a key element in government policy to support carers.

UK history and legislation

Since the 1950's UK carers have become increasingly well organised in seeking recognition, improved social care services and human rights.

In 1965 the National Council for the Single Woman and her Dependants was formed following a letter to The_Times newspaper by a carer, the Reverend Mary Webster, concerning the difficulties that confronted single women when they faced the complex task of earning the family living and caring for the home, the sick and the elderly. She began writing to newspapers, journals, MPs and peers drawing attention to the isolation and financial hardship that women carers were suffering. Her letters received a huge response from hundreds of women in similar situations.

Baroness Seear, then a lecturer in the London School of Economics was an early supporter. Due to her intervention, a meeting was held in the Grand Committee Room of the House of Commons. As a result of this meeting, The National Council for the Single Woman and Her Dependants was born, and the carers movement can be said to have begun.

During the 1960s and 70’s The National Council for the Single Woman and Her Dependants won tax concessions and pension credits for women obliged to give up work to care. In 1971 the Attendance Allowance was brought in for those needing constant care at home.

In 1976 Invalid Care Allowance was introduced - the first benefit for carers and still the only benefit specifically for carers.

1978 saw the introduction of Home Responsibilities Protection to protect carers’basic state pension

In 1981 the UK Association of Carers was formed.

Carers National Association was formed by the merger of the two existing voluntary organisations on 14 May 1988.

Specific legislation followed:

Carers (Recognition & Services) Act 1995

This Act was the first piece of UK legislation which formally recognised the role of unpaid carers and provides for the assessment of the ability of carers to provide care.


Carers_and_Disabled_Children_Act_2000

This Act makes provision about the assessment of carers’ needs; to provide for services to help carers; to provide for the making of payments to carers and disabled children aged 16 or 17 in lieu of the provision of services to them and for connected purposes

Carers_(Equal_Opportunities)_Act_2004

This came into force in England on the 1st April 2005 and in Wales on 18th April. The Act gives carers new rights to information - Section 1 of the Act places a duty on local authorities to inform Carers of their right to a Carers Assessment. Ensures that work, life-long learning and leisure are considered when a carer is assessed - Section 2 means that when a Carer's Assessment is being completed it must take into account whether the carer works or wishes to work, any courses the carer is taking or wishes to take, and any other leisure activities the carer undertakes or wishes to undertake. Gives local authorities new powers to gain the help of housing, health, education and other local authorities in providing support to carers - Section 3 states that if the local authority requests another authority to plan services, that authority must give that request due consideration.

Government legislation affecting the care of children with disabilities includes:

- Special Educational Needs and Disability Act 2001 - The Children Act 1989 - Convention on the Rights of the Child

Work and Families Act 2006

This Act, which came into force in October 2006, makes provision for improved maternity and adoption leave for women. It also extends the right to request flexible working for Carers.

See also

National organisations

References and additional reading

http://www.crossroads-scotland.co.uk/cislmain.htm

Books

National Council for the Single Woman and Her Dependants, Roxane Arnold, and Olive Chandler. Feminine Singular: Triumphs and Tribulations of the Single Woman: An Anthology. London: Femina Books, 1974.

J. Agate, Taking Care of Old People at Home, Unwin Paperbacks, London, 1979, 61.50, 159 pp. ISBN o 04 970004 9.

T. Dartington, Family Care of Old People, Souvenir Press (E & A)Ltd., London, 1980, 23.95, 159 pp. ISBN o 285 64885 3.

J. A. Muir Gray and Heather McKenzie, Take Care of Your Elderly Relative, George Allen and Unwin, London, 1980, g5.95, 202 pp. ISBN o 04 6180168.

Taking Care of Barbara: A Journey Through Life and Alzheimer's and 29 Insights for Caregivers, Bonnie Campbell McGovern

The Caregiver’s Tale: Loss and Renewal in Memoirs of Family Life, Ann Burack-Weissi

Caregiver Daily Journal By Sylvia Barron Baca

When The Man You Love Is Ill, Dr. Dorree Lynn

A Caregivers Journey-You Are Not Alone, Linda S. Thompson

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