Carers' rights are rights of unpaid carers or caregivers to public recognition and assistance in preventing and alleviating problems arising from caring for relatives or friends with disabilities. The carers' rights movement draws attention to issues of low income, social exclusion, damage to mental and physical health identified by research into unpaid caregiving. In social policy and campaigning the movement distinguishes such people's situation from that of paid careworkers, who in most developed countries have the benefit of legal employment protection and rights at work. With an increasingly ageing 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.
Unpaid carers are also referred to as "voluntary caregivers" or "informal carers"; classifications which have been criticized as a misnomer since caring for a relative or friend is normally neither voluntary nor informal. An 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." 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 £87 billion in the UK alone.
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 threefold: 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 Ageing conference in Singapore on August 4, 2004. National family carer organizations in all countries are encouraged to join the alliance.
Australia Australia has a population of over 22 million people. Of these 2.5 million are carers.Australian Bureau of Statistics 2003 Survey of Disability, Ageing and Carers. The term 'carer' rather than 'caregiver' is used in Australia.
In Australia, carers are defined as people, usually family members, who provide support to children or adults who have a disability, mental health problem, chronic condition, who are frail aged or have drug or alcohol dependencies. Carers can be parents, partners, brothers, sisters, friends or children of any age. They may care for a few hours a week or all day every day. In Australia, many carers are eligible for government benefits, while others are employed or have a private income.http://www.carersnsw.asn.au Carers NSW website
Carers in Australia receive recognition and support in a number of ways: Each of the six states and two territories have a non-government, non-profit organisation that advocates on behalf of carers through the Network of Carers Associations. They also provide information and support programs for carers. The Australian Government has supported carers since 1983 by providing carer income support and later pensions. Australian governments at all levels provide funding for carer-specific programs including carer support groups, respite, counselling for carers and in-home care for the person being cared for. Other programs assist specific groups of carers like young carers and ageing parent carers of adult children. Parent carers of children with disabilities have received financial support since 1998. In October 2010, the Australian Parliament passed the Carer Recognition Act.Carer Recognition Act 2010 For an analysis of the legislation, visit the Australian Parliamentary Library's Bills Digest.Government Parliamentary Library Bills Digest Carer Recognition Bill 2010 Many states have carer recognition laws mandating the consideration of carers in all state policy. New South Wales, for instance, enacted the Carers (Recognition) Act in May 2010.Parliament of NSW website. Carers Australia, as part of its support for young people established the Australian National Young Carers Action Team (ANYCAT) in 2007, and following the formation held the "BringIT" conference in 2008. Carers Queensland started its "Young Carers Action Committee" in October 2009, however at its first formal meeting in November 2009 the members changed its name to "Young Carers Action Board Queensland" (YCABQ) – however some board members had reservations over the use of its initials believing that some people may get it confused with Yellow Cabs. In the latter part of 2010 the Australian Government conducted consultations with the Australian community to formulate a National Carer Strategy which was released in August 2011 and formally acknowledges the vital role of carers. The National Carer Recognition legislation and the National Carer Strategy forms part of the Government's response to the 2009 inquiry into better support for carers. See below. During the latter part of 2011, the Australian Government Productivity Commission finalised two reports of interest to carers in Australia – Caring for older Australians and the Disability care and support report. Anticipation is now building as the community prepares for aged care and disability reform in Australia.
The future for carers in Australia Australia has one of the lowest population densities in the world. It has a land mass the size of the United States of America, but a population which is a fraction of the size. Providing services to carers in remote locations continues to beset the carer community in Australia.The tyranny of distance? Carers in regional and remote areas of Australia. Prepared for Carers Australia by the Australian Institute of Family Studies 2009 Many Aboriginal and Torres Strait Islander (ATSI) carers and culturally diverse carers have poor access to carer support services. The remoteness of many Aboriginal communities and their cultural approach to caring plays a part in low access rates to these services. Carer advocates work to try to address this situation.
In May 2009, the Australian Government completed an inquiry into better support for carers leading to the expectation that more will be achieved for carers in the future.Who Cares ...? Parliament of Australia. House Standing Committee on Family, Community, Housing and Youth. 2009 It initiated a feasibility study into a national social insurance scheme to replace an inadequate network of existing support for people living with disability and their carers. The draft report was completed in early 2011. National carer recognition legislation was introduced into the Australian Parliament in March 2010 and passed after the national elections in August 2010. Schedule 1 of the legislation contains The Statement for Australia's Carers.
Caring is now seen as a community responsibility in Australia as evidenced by the comments of those surveyed on the issue.Who cares? The ethics of caring in a good society. National conversation, national action by St James Ethics Centre with Macquarie Group Foundation and Carers NSW 2009 The formerly private world of carers is becoming a public concern as Australia, like other ageing populations, feels a shortage of carers.The economic value of informal care in 2010. Report by Access Economics for Carers Australia Further information on Australia's carers can be found at the websites of Carers Australia and Carers NSW.
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.
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.
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 services to 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 the family carer's time-off. Taking days-off or recreational time do not reduce the amount of family carer allowance.
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.
Carers who provide care for 20 hours a week or more are regarded as 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).