Carers rights movement

See also: Caregiver

The terms: "carers" and "family caregivers" are used in most English speaking countries to refer to the care of people with disabilities by unpaid relatives or friends. "Voluntary caregivers" and "Informal carers" are also used, but these terms have been criticized as a misnomer as caring for a relative or friend is often neither voluntary nor informal. Restrictions on the freedom and opportunities of carers caused by the heavy burden of caring have given rise to the Carers rights movement. This movement attempts to address the issues of low income, social exclusion, damage to mental and physical health and lack of recognition that have been identified by numerous research articles and studies of carers.

A widely-accepted definition of a carer is:

:“Someone whose life is in some way restricted by the need to be responsible for the care of someone who is mentally ill, mentally handicapped, physically disabled or whose health is impaired by sickness or old age.”:Baroness_Pitkeathley (1989) "It's my Duty Isn't it?" London: Souvenir Press.

More recently, Carers UK defines carers as people who "provide unpaid care by looking after an ill, frail or disabled family member, friend or partner".

Around half of all carers are effectively excluded from paid employment through the heavy demands and responsibilities of caring for a vulnerable relative or friend. Their work has huge economic and social impact, being valued at over £57 billion in the UK alone. With an increasingly aging population in all developed societies, the role of carer 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 organizations

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 U.S. 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 Europe

EUROFAMCARE aims to provide a European review of the situation of family carers of elderly people in relation to the existence, familiarity, availability,use and acceptability of supporting services. In 2003 six countries (Germany, Greece, Italy, Poland, Sweden, United Kingdom) formed a trans-European group, systematically representing the different types of welfare-states in Europe and started a comparative study. The Pan-European Group consists of 23 countries (including the six countries, which are represented by the members of the Consortium).

The last step is a feedback research action phase based both on the study results and on the pan-European expertise. A European Carers’ Charter in progress will be further developed by the new European network organization EUROCARERS in order to stimulate further activities both on national and European policy levels. [http://www.uke.uni-hamburg.de/extern/eurofamcare/]

[http://www.eurocarers.org EUROCARERS] was formally launched in June 2007 to provide a united voice at European level and influence policy both nationally and within the European Union. Eurocarers currently comprises representatives of 18 organisations and research bodies from nine countries. Members have come together to influence policy within the European Institutions to ensure that the invaluable contribution of carers is recognised across Europe. [http://www.carersuk.org/Aboutus/MoreaboutCarersUK/StrategyAnnualReportAccounts/FINANCIALSTATEMENTS13.9.07.pdf]

Carers in the UK

According to 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.

Research has shown that becoming a carer can have many impacts on a person's life. These include financial costs, exclusion and discrimination at work, social isolation and poor health through stress and physical injury.

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 £87bn a year, [http://www.carersuk.org/Home] and economic considerations form a key element in government policy to support carers.

The importance given to carers rights and legislation is evidenced by the record of parliamentary speeches, with 4,118 debates including some mention of carers at the end of March 2008 [http://www.theyworkforyou.com/search/?s=carers] .

UK history and legislation

Since the 1950's UK carers have become increasingly well organized 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. Early supporters and fundraisers included Sir Keith Joseph, MP.

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 by Judith Oliver, Sandra Leventon and others, aided by a grant of £9,879 from the Equal Opportunities Commission. It was initially refused registration as a charity, as helping carers was not at that time regarded as a proper charitable object by the Charities Commission, finally being registered in 1984. The group campaigned fiercely for Invalid Care Allowance to be extended to married women. Following a test case brought to the European Court on behalf of Jackie Drake, in June 1986 the government capitulated.

In 1982 The National Council for the Single Woman and Her Dependants was renamed "The National Council for Carers and their Elderly Dependants" in an attempt to be more inclusive and gain ground lost to other carers groups. They had opposed the extension of ICA probably because of reports that Norman Fowler had said that he would abolish ICA rather than extend it."Carers National Association was formed by the merger of the two existing voluntary organizations on May 14 1988. and was renamed Carers UK in 2001.

Specific legislation followed:

Carers (Recognition & Services) Act 1995

This Act was the first piece of UK legislation which formally recognized 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, which does not cover Scotland, 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 April 1 2005 and in Wales on April 18 2005.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 England in October 2006, makes provision for improved maternity and adoption leave for women. It also extends the right to request flexible working for Carers.

Carers in Scotland

Policy and legislation in relation to caregivers living in Scotland is somewhat different from that in England, Wales and Ireland. Carers are defined by the Scottish Census as being “individuals who look after, or give any help or support to family members, friends, neighbours and others because of long-term physical or mental ill health or disability or problems related to old age” (Scotland’s Census Results Online [SCROL] . Estimates from the 2001 census put the numbers of carers in Scotland at 481,579. Of these, 175,969 are reported to provide more than 20 hours of care a week, and 24% provide more than 50 hours of care ( [http://www.scrol.gov.uk)] .

Carers who provide care for 20 hours a week or more are regarded as being at the ‘heavy end’ of caring (Parker 1990). This assumes that they are the most involved carers, providing both personal and physical care, resulting in high levels of stress and most in need of support services. Many of these carers however, continue to provide care without support from social work or health services and because of this they remain hidden or invisible (Scottish Executive 2006, Cavaye 2006).

Carers are viewed by the government as an important resource and in recent years have been given increasing recognition in health and social care policy. Since devolution in 1999 legislation and policy for caregivers has been developed by the former Scottish Executive (now Scottish Government).

Carers in Scotland are regarded as ‘partners’ in the provision of care. As a result, support services provided to carers are regarded as part of the overall package of care to the person being looked after. This means that carers are not seen as service users and are therefore not responsible for the cost of any service provided. The exception to this is when a carer is looking after their partner; in that situation their income may be taken into account during a financial assessment.

This situation is different from that which exists in England where carers are viewed as services users in their own right and as such are liable for the cost of services provided. Yet, in many cases, it is not the carer who actually needs the service; it is the person being cared for who needs it because of their illness or disability.

Policy, Practice and Legislation for Carers in Scotland

Strategy for Carers in Scotland 1999This was a package of measures put in place by the Scottish Executive (became The Scottish Government in 2007) after devolution in 1999. The aim was to commit resources in order to improve service provision for carers. The Strategy comprised three elements: information, support and care for carers. Central to the Strategy was a number of assumptions including a carer’s right to choose to care, to be adequately prepared to do so, to receive relevant help at an appropriate stage, and to be enabled to care without it adversely affecting their health or inclusion in society. An important aspect of the Strategy was its emphasis on the provision of services for carers in their own right. This issue built on the provisions of the 1995 Carers (Services and Recognition) Act, which accorded carers the right to an assessment of their needs only if the person they were caring for was being assessed. This measure however, limited carers entitlement to services, undervalued their role and their needs.

Community Care and Health Scotland Act 2002This legislation introduced new rights for carers in Scotland. The Act made provision for the right to a carer’s assessment which was independent of the person being cared for. It also placed a duty on local authorities and the NHS to inform carers of their rights. Local authorities are also required to recognise the care being provided by a carer and to take into account the views of a carer when deciding what services to offer to the person being cared for. Underpinning this legislation is the principle that informal unpaid family carers are to be treated as ‘key partners’ in providing care.

The other important policy introduced by this legislation which impacts upon carers is that of Free Personal and Nursing Care for Older People. This policy is unique to Scotland. The definition of personal care contained within the Act does not include ‘board and lodging’ or ‘hotel’ costs. The definition is mainly based on the one used by the Royal Commission on Long Term Care (1999) except that it takes account of the needs arising from cognitive impairment and behavioural problems as well as physical frailty. Thus the definition of is different from that used by social services in England. The definition is important because it is used as a basis for community care assessments and describes the range of tasks that might be undertaken by home carers employed by social work departments. It is also an accurate reflection of the activities undertaken by informal, unpaid family carers. This policy has been found to be very effective in supporting carers to continue providing care for longer and the researchers found that the volume of care being provided at home had actually increased in recent years (Bell & Bowes 2006)

The following external websites show recent Scottish legislation and policies:

• http://www.scotland.gov.uk/library2/doc10/carersstrategy.asp" Strategy for Carers in Scotland - The Scottish Executive's Carers' Strategy

• http://www.doh.gov.uk/carers.htm" Caring About Carers - the national strategy of carers. - The UK strategy from the Department of Health.

• http://www.carestandards.org.uk/nation+min.+standards/default.htm" National Care Standards - Gateway to National Care Standards legislation.

• http://www.dpscotland.org.uk/2002dp/5stepsla" Five Steps - A guide to local authorities implementing direct payments

• http://www.scotland-legislation.hmso.gov.uk/legislation/scotland/acts2002/20020005.htm" Scotland Health and Community Care Act 2002

• http://www.hmso.gov.uk/acts/acts1995/Ukpga_19950036_en_1.htm" Children (Scotland) Act 1995

Carers in Finland

There are over 300,000 (estimate) family carers in Finland

*Of them some 29,000 receive family carer’s allowance from their respective municipalities under The Act on Family Caregiving

*The municipality may arrange various social and healthcare servicesto backup family caring. The main types of services are home help and home nursing; meals on wheels; rehabilitation, short-term care etc.

*The law ensures a minimum caregiver allowance of EUR 310.Caregivers in heavy caring situations will receive a minimum of EUR 620 a month. (taxable)

*Time off for the carer: at least 3 days / month

*When the carer is continuously or with only minor interruptions tied up to caring.

*The Municipality has to ensure that the care for the care recipient is appropriate during family carer’s time-off. Taking days-off or recreational time do not reduce the amount of family carer allowance. Source [http://www.eurocarers.org/userimages/Paris%20publications/Carers-Finland-Eurocarers-conference.pdf]

Caregivers in the United States

The National Family Caregivers Association was founded in 1993. 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." [http://www.nfcacares.org/who/stats.cfm#1] . The vast majority of these are unpaid caregivers.

Nationally constituted campaigning organizations run primarily by carers for carers

* [http://www.carersaustralia.com.au/ Carers Australia ]
* [http://www.carersuk.org/Home Carers UK ]
* [http://www.caregiver.org/ Family Caregiver Alliance (U.S.) ]
* [http://www.mantelzorg-lot.nl/ LOT(Dutch Carers Association)]
* [http://www.caregiving.org/ National Alliance for Caregiving (U.S.) ]
* [http://www.caregiving.org/ National Alliance for Caregiving]

References and additional reading

* [http://www.caregivermag.com CAREgiver Magazines]
*Elderly care
* [http://alzonline.net/ Alzheimer's Caregiver Support Online]
* [http://www.aarp.org/ AARP]
* [http://www.caregiver.com/ Caregiver.com Magazine]
* [http://www.nfcacares.org/ National Family Caregivers Association]
* [http://www.wellspouse.org/ Well Spouse Association]
* [http://www.americanheart.org/caregiver American Heart Association's Heart of Caregiving site]
* [http://www.strengthforcaring.com/ Strength for Caring online resources for caregivers]

Books about the Carers rights movement

* Bell, D and Bowes, A (Financial Care Models in Scotland and the UK, Joseph Rowntree Foundation, York
* Cavaye, J. (2006) Hidden Carers, Dunedin Press, Edinburgh
* 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.
* The History of the Carers' Movement, Tim Cook, ISBN 978-873747-36-0 Carers UK, 2007
* Scottish Executive (2006) The Future of Unpaid Care in Scotland, Edinburgh, Scottish Executive.
* Parker, G. (1990) With This Body: Caring and Disability in Marriage, Buckingham, Open University Press.