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Care and Support: TUC Briefing Note
The Government's debate
In May the Prime Minister and Health Secretary launched a debate about the long-term future of the care and support system (but only in England.) To support this debate the Government published a briefing document, launched a website http://www.careandsupport.direct.gov.uk and announced a series of regional consultation events. You can register to participate in these events at http://www.coievents.co.uk/careandsupport
The TUC will contribute a written submission to this debate, incorporating comments from trade unionists. Please send your comments to Richard Exell (rexell@tuc.org.uk) as soon as possible, and by no later than 19 October.
The case for change
The briefing document is called The case for change - Why England needs a new care and support system and it is available on the web, at http://care.redefine.co.uk/wp-content/uploads/2008/06/286897_social_care_acc_1.pdf The Government believes that fundamental reforms of care and support are necessary for two reasons:
Demographic changes (especially the impact of an ageing population) and
What people expect from services like social care has changed.
Because of these changes the Government thinks that it will be necessary to change how care and support services are paid for and how they are delivered. The briefing document looks at how responsibility should be shared between individuals, their families and the Government.
When the Government talks about 'care and support' it means 'the activities, services and relationships that help people to be independent, active and healthy - as well as to be able to participate in and contribute to society - throughout their lives.' They have indicated that the services that could be affected by this debate include:
Social care, like meals on wheels, care homes and support for carers.
The housing support for older and disabled people that is delivered through Supporting People and the Disabled Facilities Grant.
Support for independent living, including the Independent Living Fund.
Disability costs benefits like Disability Living Allowance or Attendance Allowance.
Everyone has an interest in care and support - most people at some point in their lives will need services because they are disabled, or have a long-term illness or have grown older or have become an informal carer.
A vision for the future
The discussion document sets out a vision for the future:
'The Government wants a society where all are respected and included as equal members of society, and where everyone has the opportunity to fulfil their potential. Public services should enable people to feel empowered and supported in meeting their aspirations. Everyone should be able to understand their role in terms of what they contribute to society and what they are entitled to receive from the state.'
This means that the Government wants to help people to be able to work, take part in education, care for their family, stay or get well after accidents or surgery, carry out everyday activities like shopping or cooking, look after themselves (e.g. washing and dressing) and be safe at home.
But it also emphasises that the new system must be financially sustainable in the long term for the government, service users and families.
An ageing population[1]
England is getting older; in the next twenty years the number of people over 85 will double, and the number over 100 will treble - and 1.7 million more people will need care and support services. If nothing is done some people will be left without support and in some other cases the strain on families will be severe.
Funding dilemmas1
If nothing is changed, spending on disability benefits will rise 50% over the next 20 years and the existing range of social care services will cost an extra £6 billion. At the same time, more and more people want (and expect) to remain independent for longer, living in their own homes (and this can often be expensive). A means-tested system will discourage paid employment and penalise those who have saved for their old age or insured against extra costs or the loss of income. A universal system, on the other hand, will be more expensive.
There are also funding consequences following decisions about whether the system should emphasise local flexibility or avoid a postcode lottery, and whether the same approach should be taken to all clients, or a distinction drawn between people who become disabled when young and older people.
The resolution suggested in the discussion document is 'that everyone can receive the high-quality care and support they need, and that everyone gets some support from the Government, but that funding is targeted at those most in need.'
Personalisation
A number of secondary themes are also highlighted in the discussion document, such as the lack of transparency about what people are entitled to or the importance of improving the quality of services. One of the most important is the 'personalisation' agenda: giving service users a personal budget which gives them control and makes it possible to tailor what they receive to their personal needs; this is expected to produce much more integrated service. The Government expects this round of reforms to result in person-centred planning and self-directed support becoming part of the mainstream.
The Wanless Review
The most substantial recent review of care services for older people was Securing Good Care for Older People: Taking a long-term view, a report by Sir Derek Wanless for the King's Fund, published in 2006. (http://www.kingsfund.org.uk/ publications/kings_
fund publications/securing_good.html) The review looked how much should be spent on social care for older people in England over the next 20 years and the funding arrangements that would be needed.
When the Wanless report was published there were more than one million people aged 65 or over using local authority care services. In 2004/5, local authorities spent £8 billion on personal social care services, and recouped £1.6 billion in means-tested charges. £3.7 billion was spent on non-means-tested benefits to cover care costs, and private spending on resident and home care probably exceeded £15 billion a year. There was little information about the effectiveness of this spending.
Wanless reported widespread dissatisfaction with the funding system, in large measure due to ignorance about what to expect. Most budgets were based on historical patterns, and there had been no attempt to calculate the right amount to spend. Wanless predicted growing demand for care services and added to this the need to address shortcomings in the system as it stands:
Unmet need.
Failure to make the care and health systems work together.
Expanding home care would be an efficient way to spend extra resources.
Only a minority of informal carers receive carer support services.
The Wanless review concluded that the current system cost 1.1% of GDP (2002 figure) and this would rise to 1.5% by 2026, but that a 'core business model', providing 'the highest levels of personal care and safety outcomes justifiable given their cost' would 2% by 2026. Providing this increased funding should be dependent on reform of services; this should include an increase in the size of home care packages for people with moderate and high levels of dependency, extra funding for carers and extra support to promote well-being, especially by tackling loneliness and isolation.
The most significant Wanless recommendation was a partnership funding model. The review considered a universalist approach (such as free personal care), which would entail funding a higher level of service than society seems willing to support and this means that some of the money would have been better spent on other objectives. A means-tested system would be the cheapest for the state, but would lead to a sub-optimal level of spending on care services.
In the partnership model everyone would be entitled to a minimum amount of free care, set in this case at 66% of a benchmark care package. Individuals would be able to top this up to the benchmark level, with the state paying £1 for every £1 the individual paid (the benefits system would help people on low incomes.) This would remove means-testing, require everyone to make some contribution, reduce the numbers having to sell their homes and would be sustainable.
The Disability Agenda
In 2007 the Disability Rights Commission (since merged into the Equality and Human Rights Commission) published a Disability Agenda that included a section on 'Developing a Social Care System Fit for the Future'. This argued that the current social care system risked undermining the well-being of individuals and the prosperity of the country because damaging trends: only providing services to those with the highest needs and relying on families to fill the gaps.
The DRCargued that 'demand massively outstrips supply and the way in which services are provided does not meet people's aspirations for independence and choice.' Some indications of a crisis included:
Most local authorities only provide services to people who have been assessed as having the highest levels of need.
Where care and support are provided, few people receive more than 'life and limb' support - help with feeding, toileting, getting up in the morning and going to bed at night.
Despite the public's preference for home support the number who received it was falling - by 11% between 2000 and 2005.
The number of people in inappropriate residential settings was rising: the number of young people with physical impairments living in care homes designed for different client groups rose from 8,000 in 2002 to 9,000 in 2005.
Residential services often isolated disabled people - the average residential placement for someone with a learning disability was 74 miles from home.
The standard of quality was commonly too low - nearly half the care homes for older people and young disabled people in England did not meet the minimum standard for the provision of medication and one in six did not meet the minimum standards for meals.
Disabled people in institutions often lacked the human rights of privacy, dignity and self expression. They were often prevented from deciding when and with whom to share a bedroom, from conversing in their own language, from expressing their sexual orientation and sexuality.
One and a quarter million informal carers provide at least 50 hours support a week, a level that would break the Working Time Directive if they were paid workers. Many carers' health and employment prospects suffer as a result.
The DRC suggested that the objectives of reform should be to:
Extend the choice and control that individuals can exert over their support services.
Set national frameworks of minimum entitlements to social care.
Incentivise services that support people to live in their own homes and participate in public life.
Ensure that everyone is treated with dignity and respect.
Carers, Employment and Services
In 2007 Carers UK published Carers, Employment and Services: time for a new social contract? This report set out a 21st century vision for carers, based on the results of a study carried out by the University of Leeds.
Carers UK pointed to the economic consequences of the current system. Two thirds of Britain's 4.27 million working age carers are in employment, but often the combination of the two roles with inadequate support leaves them badly stressed and in poor health, others would like to return to or retain employment, but find it impossible. The report made some important points about the weaknesses of current provision:
Informal caring is a normal part of life, most people can expect to find themselves as carers at some point, and yet the lack of support available suggests that it is exceptional. People new to caring are shocked to find how difficult it is to obtain information, advice and support.
It is wrong that caring ends people's careers, damages their education and forces them to give up training. Most working carers felt they had support from their friends and family, and about half felt their employers were supportive but only a quarter thought they had adequate support from formal services. Support for people who combine caring with paid work is particularly inadequate.
The report called for a 'social fabric' approach, which values, involves and consults carers, and where support is shared across all public services. Local providers of social care services, workplace support and the local health service were key elements of the support infrastructure carers needed. Carers, Employment and Services identified three elements of a 'new social contract for care':
Health is a major issue for carers, whose health bears a negative relationship to the intensity and duration of caring. Carers need flexible breaks from their caring role, training and support in the tasks they carry out as carers, services to cope with crises and unforeseen circumstances and help in combining paid work and caring would improve carers' health.
Money is almost as important. Carers are much poorer than non-carers and this is a direct result of the lost earnings and extra costs that result from being carers. Again, support in combining paid work and care would make a major difference. The design of jobs could make a significant contribution, with more opportunities for part-time and reduced hours working being particularly relevant. Women and men who have taken time out from employment to care for someone should not face a lower pension as a result.
Inclusion - the isolation of carers is not only an evil in itself, it means thattheir views often go unheard. The report calls for a public sector duty to promote equality for carers, who should specifically be included in all legislation. The right to request flexible working should be extended to all employees, as this would guarantee that carers were covered, and welfare-to-work policies should be designed to meet carers' needs.
[1] The facts presented in this section are taken from The Case for Change.
Briefing document (2,300 words) issued 1 Jul 2008
