Health systems and long-term care for older people in Europe. Modelling the interfaces and links between prevention, rehabilitation, quality of services and informal care
Policy and Governance Legal Framework legislation which explicitly addresses LTC with respect to informal carers
COUNTRY / LOCATION: United Kingdom Keywords: Carer’s rights, legislation, carer’s needs assessment, independence
Informal carers’ rights to an assessment of needs
Around 6.8 million adults in Britain are informal carers (referred to as ‘carers’) and approximately three quarters care for older people. As the population ages, carers may need to provide even more support for longer periods. Legislation in the past two decades has recognised the contribution of informal carers and has acknowledged their individual needs. Their right to an assessment of their needs is the subject of the Carers (Recognition and Services) 1995 Act, Carers and Disabled Children Act 2000 and Carers (Equal Opportunities) Act 2004. The Acts cover carers over the age of 16 in England and Wales. The 1995 Act introduced the concept of a carer’s assessment which has since been expanded in the subsequent two acts to give carers the right to an assessment and to give them opportunities equal to those of non-carers in recognition that caring is not a legal obligation. The 1995 Act was the first piece of UK legislation to fully recognise the role of carers and the sum of these rights are highly valued by carers.
What is the main benefit for people in need of care and/or carers?
Carers benefit from the entitlement to an individual needs assessment separate to the cared for person which means they are also allowed to personally receive services or cash in kind benefits direct from local authorities.
What is the main message for practice and/or policy in relation to this sub-theme?
Local authorities must consider the needs and wants of carers beyond their caring activities. This legislation has manifested itself in a range of initiatives to support carers which vary across England and Wales, such as increased funding for short term breaks, emergency support services for carers, and day and respite care for the cared for person.
Why was this example implemented?
Informal carers (referred to as ‘carers’) are often as marginalised as the people they care for and their health and well-being can be at risk without proper support. Twigg and Atkin (1994) propose a useful framework to conceptualise service support for carers which is used here to help explain the progression and remit of the legislation. There are four types of models for how service providers respond to carers:
Carer as resource: Carers are valued only in terms of their ability to provide care as the focus of support is on the cared for person.
Carer as co-worker: Carers are viewed as working jointly with formal services, though with some consideration for the carer’s interests as these impact on the sustainability and quality of care.
Carer as co-client: Carers with heavy burdens are viewed as having their own needs which should be supported, though needs may be met to the detriment of the cared for person, i.e. with institutional respite care.
Superseded carer: Focuses on increasing independence of the cared for person such that the carer is freed from caring.
Prior to 1995 carers were viewed in legislation primarily as a resource to provide care for older or disabled people (model 1). This lack of recognition of the true value and burden of caring and pressure from carer’s groups prompted the passage of the first of three pieces of legislation in 1995 to take into consideration carer’s needs on a basic level (level 2). It was followed by two more Acts over the next 10 years which promoted the equal rights of carers (models 1,2,3,4).
Successive Governments in the UK have increased the rights of carers incrementally with three key pieces of legislation. The Carers (Recognition and Services) Act 1995 recognised for the first time the role of carers in providing care in the community and was seen as an important step forward in carer’s rights (DH and DfES, 2005). The Act entitled carers who provide a substantial amount of care on a regular basis to request an assessment at the same time as the cared for person’s assessment. However, the assessment outlined in this Act only considered the carer’s ability to care and to sustain caring for the cared for person. Importantly though this Act first outlined the concept of an assessment for carers (model 2).
Following on the from 1995 Act, the Carers and Disabled Children Act 2000 altered the remit of the assessment to focus more on the needs of the carer in their own right (i.e. as a co-client, model 3) rather than as a resource for the cared for person. The 2000 Act has the following three provisions: gives carers the right to an assessment even if the cared for person has refused an assessment or community services, gives local authorities the power to supply services or money direct to carers, and gives local authorities the option of providing carers with short term break vouchers for respite.
The Carers (Equal Opportunities) Act 2004further expanded on the 2000 Act to give carers opportunities commensurate with their non-caring peers. It also had three provisions:requires local authorities to inform identified carers of their right to an assessment, assessments must also consider the carer’s wishes relating to work, leisure, education and training, and local and public authorities must work together in planning and delivery of services to support carers in their caring role.
These Acts could not be implemented without corresponding monetary support. The Carer’s Grant was introduced in 1999 to support carers’ breaks and services. The grant is paid direct to councils and in 2009-2010 was worth £240m (€280.8m) (DH, 2009). An example of how this grant was spent from one county in England (Kent) states that Kent Adult Social Services (KASS) was allocated £4,663,000 (€5,455,710) in 2009/10 for their Carer’s Grant. This grant covers a range of caring related services including: the Learning Disability Development Fund, Kent Carers’ Emergency Card scheme, the carer’s survey, evaluation of carers’ services, one-off direct payments to carers, consultation events with carers, day care, respite and carers’ short-term breaks.From April 2009 to March 2010 KASS carried out 204 carers assessments of an approximate carer population of 139,500 (KASS, 2010). From these assessments £20,000 (€23,400) was paid directly to carers for short breaks.
What are/were the effects?
The Acts have been progressive in that each one has built on the previous Act as evidence has arisen to its effectiveness or ineffectiveness. A survey published in 2003 showed that carers’ desire and need to continue in employment was not often included in their assessment (Carers UK, 2003); the Act in 2004 subsequently addressed this gap.
The sum of these Acts has furthered the debate about carer’s rights and increased support schemes for carers which are highly valued by those who receive them. The legislation addresses all four models of service support and providers are likely to draw on each of the models depending on what is appropriate. There are now numerous service providers offering a range of services with the specific aim of meeting the needs of carers but in ways that they can continue caring. In particular, the use of short term breaks has been championed as the way forward to best support carers. These rights and the resulting service provision are evidence of a systemic impact which has been sustained and increasing for more than a decade.
The combination of the right to a carer’s assessment and the government’s personalisation agenda (giving people more choice in the care and support that they receive) has considerable potential impact for improving the lives and independence of carers as well as those they care for. A high proportion of carers over the age of 65 provide a substantial amount of care (50+ hours per week) (ONS, 2006), but people in this age group are also likely to suffer from long term conditions themselves. Thus an assessment of their abilities and needs as carers and individuals should lead to support to help them continue caring. However, the quality and topics covered by the assessment can be variable. Also some carers are missing out on an assessment as they choose not to be assessed or are unaware of the potential benefit of an assessment. There is evidence that carers’ assessments are leading to increased support, especially since the introduction of the Carers Grant, but there is considerable room for improvement (Carers UK, 2003).
What are the strengths and limitations?
The Acts of 2000 and 2004 separate the needs of carers from the cared for person, thus treating them as an individual entitled to their own support.
Though the 2004 Act stipulates that service providers must notify carers of their right to an assessment, it is still difficult for providers to identify carers if the cared for person is not known to services. Thus many carers may not be aware of their rights to an assessment.
Carers’ legislation gives authorities the power to provide services direct to carers, but does not make it a duty to provide services.
Signalling out carers’ needs separate from older and disabled people should promote a change in social care professionals’ attitudes towards the value of carers and their needs.
Since the recognition of carers’ legal status in 1995, there have been other related pieces of legislation that pertain generally to the rights of carers, i.e. Equality Act 2010 which states that carers cannot be discriminated against because they are carers.
If carers are not aware of the purpose of the assessment or what services they could receive as an outcome, then carers may not take up the offer of an assessment.
Author: Laura Holdsworth Reviewer 1: Teija Hammar Reviewer 2: Hannelore Jani Verified by: Amanda Edwards, Social Care Institute for Excellence & Deborah Sturdy, Department of Health