Health CommitteeWritten evidence from National Pensioners Convention (SC 22)

Summary

The existing care system and its funding suffer from a number of inherent problems; namely its complexity, the unfairness of means-testing, a postcode lottery of costs and standards.

The Dilnot Commission has recommended very little that will end means-testing, improve standards or prevent people from still having to sell their homes to pay for care.

There are serious concerns over access to care services, as local authorities ration services either to those with the greatest needs or through additional charges. As a result, individuals will either be asked to pay more for services, go without or rely on informal carers for support. This in turn will place an increased burden on the individual and their family, without the provision of any additional financial or practical support.

The personalisation of care must not be regarded simply as the introduction of individual budgets. Individual budgets raise serious concerns about suitability, safety and the protection of vulnerable individuals, as well as the emergence of third party organisations who will offer to manage budgets at the expense of care funding.

The fairest and most equitable way of providing a universal, free at the point of delivery National Care Service that can offer comprehensive care to all in need, is through general taxation.

Introduction

1. For years the social care system has been failing the needs of those who are reliant on the service. At the heart of the problem are issues of complexity, the unfairness of means-testing, a postcode lottery of funding and charges and little support for family carers. In addition, there are concerns surrounding the standards and quality of care services, the training, remuneration and employment conditions of the care workforce and the lack of a robust and effective regulator. The system is therefore in urgent need of reform.

2. However, one of the major barriers to providing a comprehensive, joined-up service remains the artificial distinction between nursing care which is provided free at the point of delivery by the NHS, and personal or social care which is means-tested in the community. Today, frail elderly people are moved as quickly as possible from hospital into nursing homes, or they spend a long and stressful period at the end of their lives, paying a high cost for inadequate care in their own homes.

3. Not only has the division between nursing and personal care made the possibility of providing good quality, seamless support more difficult to achieve; it has also been responsible for incorrectly labelling illnesses such as dementia as social care and pushed services beyond the boundaries of the health service. Any inquiry into social care must therefore address this fundamental issue.

The Funding of Social Care

4. On 4 July 2011, the Dilnot Commission into the future funding of care published its report entitled Fairer Care Funding. The Commission stated that the current care system was not fit for purpose and in need of urgent reform. It identified a number of fundamental problems:

The current system is confusing, unfair and unsustainable.

Eligibility for support varies depending on where you live.

There is a lack of financial products to help people meet their care costs.

5. Alongside these findings, the Commission also made a number of recommendations, including:

Capping an individual’s contribution to their care costs at £35,000. The state would then pay additional care costs once the individual had met that cap.

Means-tested support for residential care would be available to those with assets/income worth between £14,250 and £100,000 (including the value of any property). For those with assets worth £75,000 the cost of care would be around £15,000. Those with less than £14,250 would not pay any care costs.

Those in residential care would still be liable to pay for their food and accommodation costs—capped at a maximum of £10,000 per year. This would mean individuals paying up to £190 a week.

The Commission’s proposals are estimated to cost £1.7 billion a year rising to £3.6 billion by 2026. The recommendations suggest that this money could be raised either through additional income tax, re-allocation of existing government expenditure or using a specific tax such as national insurance on those aged 65 and over.

There should be a new national assessment system which would guarantee support to those with “substantial” needs or worse—but not anyone with moderate needs (including those requiring help getting in and out of bed). This assessment would be portable and apply if you moved from one area to another.

6. Despite the urgent need for a solution, the Dilnot Commission’s recommendations have fallen short of the expectations of older people, their families and carers. In particular:

It remains unclear how the Commission’s proposals relate to care at home. At present the value of your property is not included in the assessment of your assets when determining if you are eligible for support from your local authority. The Commission is suggesting that this may need to change in the future. However, the report focuses almost exclusively on the costs and payment of residential care, and does not address those issues in relation to care at home.

The proposal to raise the threshold on assets to £100,000 before being liable to pay care costs will not prevent older people from still having to sell their homes in order to pay for care. The Commission accepts that the median housing wealth for a single pensioner is £160,000, and therefore most home owners will be unaffected by the proposal.

Introducing a cap on care costs of £35,000 amounts to just over one year’s worth of care in a nursing home. The Commission estimates that a year’s residential care costs £28,600. However, only a quarter of all over 65s are likely to ever need care that costs more than the capped amount. Given this, it is questionable whether the state would ever step in to pay any additional costs in all but a minority of cases. The Commission even states “We see our proposals as a type of social insurance policy, with a significant “excess” that people will need to fund themselves”.

Suggesting that additional funding for care could be found by making older people pay national insurance places an unacceptable burden on a single generation—rather than sharing the cost of care across society as a whole. It would be the only area of welfare provision where one section of society was paying for itself eg older people paying for the care of older people, rather than the costs being shared across the population as a whole.

Introducing a higher threshold of need before someone can access care will leave hundreds of thousands of vulnerable older people without any support in the community. Access to care services needs to be widened, rather than restricted in this way. The removal of low level support will inevitably lead to a worsening in conditions which will accelerate more severe care needs and higher costs.

None of the proposals will end the means-testing of care, prevent people from selling their properties, assist family carers or address the urgent need to improve the standards and quality of care that individuals receive.

Access to Care

7. In 2003, the Fair Access to Care Services (FACS) guidelines were introduced as a response to the outcry against the “postcode lottery” which allowed local authorities to use different criteria for assessing an individual’s need for care. The guidelines state that every local authority in England must use four standard criteria: critical, substantial, moderate and low to assess and deliver social care, but all the evidence shows that most councils now only help people with substantial or critical needs, leaving many needing help to fend for themselves or rely on friends and family for support.

8. It is estimated that at least 160,000 households are currently denied the help they need, whilst rising charges for those still receiving care in their own homes, are forcing older people to reduce or even stop their support services.

9. A National Coalition on Charging report in 2008 revealed that:

80% of people surveyed who no longer use care services say charges contributed to their decision to stop their support.

29% of respondents did not feel their essential expenditure (related to impairment/health condition) was taken into account in financial assessments to pay charges, meaning they have to choose between essential support and equally essential food, heating or utility bills.

nearly three quarters (72%) of people surveyed believe the government should think about the charges people pay for support at home in any plans to reform adult social care.

a fifth (22%) of people surveyed who currently use support suggested they would stop if charges increased further.

10. The Royal College of Nursing (RCN) has also claimed that the rationing of support to those with the most critical care needs has created a “revolving door”, as older people who have unmet care needs are forced to go to hospital, placing the NHS under greater strain. Nurses also say they are frustrated that when older people are admitted to hospital, for instance after suffering a fall, they are only able to give them “wash and go” treatment rather than being able to ensure they are eating well and able to live independently.

11. Given the government’s ongoing cuts to local government funding, and the lack of ring-fencing for social care, the rationing of services is therefore set to increase. Research suggests that at least 250,000 older people could lose their home care as a result.

12. Of these older people, 100,000 are projected to go without any support at all, while the remainder would be expected to buy support privately. There would be a 23% rise in unmet need, when measured in hours of personal care required but not provided (neither by paid or informal carers) and as a result there would be a 25% rise in hours of personal care provided by informal carers.

13. As a result of such rationing, those with low and moderate needs have no choice but to either rely on voluntary organisations or family members to help, or do without. Naturally, this situation can lead to a worsening of their condition and their needs may eventually reach a substantial or critical level. The cost of providing this extreme level of care is therefore more expensive in the long term than would have been the case with earlier intervention; when needs are at a lower level. Any solution must therefore be for the long-term.

14. However, what is extremely worrying is that because the social care system has long been the Cinderella service of the welfare state, it has encouraged low expectations from those who it is supposed to support. Many individuals have modest desires about what help they might get when entering the system. Many feel they are receiving less support than they need—or are trying to muddle through without any help or guidance.

15. The exclusion of lower bands of eligibility means that people have particular difficulty in getting support with practical—yet vitally important tasks—such as housework, gardening and shopping. The National Pensioners Convention’s own research has found the care gap can include a lack of help with cooking, gardening, housework, visiting day centres, going out, shopping, DIY/maintenance, adaptations to property (ramps, showers etc) and bathing.

16. Ultimately, the burden created by this care gap is felt by the individual’s family and carers. Despite a commitment from the previous government to “valuing” carers through a Carers’ Strategy which is due to come into force by 2018, there is no suggestion from the Coalition of changing the current rules on the carer’s allowance which prevents someone in receipt of a state pension from claiming. Many support services, such as respite care, are also unavailable to existing carers. As a result, the constant pressure of looking after a highly dependent individual, without the necessary support and help can lead to passive neglect, because the older carer is simply no longer able to cope.

The Personalisation of Care

17. The personalisation of care was at the heart of both the previous and present government’s policy, but the idea of personalisation must not be confused with the introduction of personal or individual budgets.

18. Local authorities are already facing an impossible task of delivering personalised care and support against a growing demand, with no extra funding, whilst at the same time trying to generate efficiency savings. Government policy and local authority practice, together with tightening budgets, therefore mean that the personalisation agenda is helping to produce a market-led model of care provision.

19. Local authorities increasingly outsource services to private and third sector providers; while under the direct payments scheme, an assessment is made of the user’s needs in terms of hours, and is converted into an amount required to deliver that care in the form of a personal budget which users can spend as they choose.

20. However, the introduction of individual budgets raises a number of serious concerns. Many budget holders will be met with a bewildering choice of care providers, consisting of local authority services, private companies and the voluntary sector. The individual will therefore need to be directed to the “experts” offering advice and services and will inevitably be drawn into the growing market where private companies, the voluntary sector and charities compete for contracts to supply such services. As a result, the organisation offering “advice” may be the same one that is also providing a service. This therefore raises serious concerns relating to impartiality and independence.

21. Research also shows the negative physical and psychological effects that the responsibility of managing individual budgets can have on older people. The IBSEN Individual Budget Pilots Evaluation report October 2008 showed that service outcomes for those using an individual budget in the pilot were not improved for older people, and that their psychological well-being was damaged.

22. However, despite this obvious drawback for older people, the government seems intent on promoting individual budgets as the only mechanism through which care services can be accessed. This “cash for care” model has shown that some local authorities are now refusing to offer a choice of how services can be accessed—with access to care being limited through direct payments only. The principle that all service users should have an individual budget in order to receive a minimal service is therefore inappropriate, especially as most frail older people simply want a decent service arranged for them that meets their needs.

23. Ultimately, the introduction of individual budgets will transfer risk and responsibility either to the individual who needs social care or to their relative(s). They must now take on management tasks or deal directly with the private companies which will provide their advice or care for profit. However, there is no clear guidance for the individual when becoming an employer.

24. Fundamentally, expecting some of our most vulnerable older people to take on the responsibility of micro-employers—recruiting, dealing with payroll matters, contracts, discipline, employment rights, paying tax and national insurance—is simply unrealistic. In effect, rather than giving choice, individual budgets open up opportunities for abuse by those who manage the individual’s affairs and those organisations who see it as a chance to win contracts and make profits. Already evidence is emerging around the country that private agencies are offering to manage budgets for an average cost of 10%-15%; which in most cases will be paid out of the money that should have been used on care. It should also be noted that at the moment, these brokers currently fall outside any regulatory framework.

25. In addition, individual budgets raise serious concerns about the safety and protection of vulnerable individuals who will be responsible for employing their own care workers, who as lone workers are at present also exempt from registration, regulation and inspection. The responsibility of individual budget holders for arranging suitable cover for staff absence due to sickness and maternity leave also adds to this concern.

26. Far from enabling a highly-skilled and motivated workforce, the model of provision that is actually emerging encourages low pay and poor conditions, and risks entrenching problems of inadequate recruitment, retention and career development.

27. Furthermore, shifting funding and responsibilities onto individuals undermines local authorities, local democracy and the role of the welfare state. The personalisation of care is therefore becoming synonymous with reducing choice, increasing privatisation and allowing the growth of an unregulated care service.

An Alternative Vision of Social Care

28. There is an urgent need to develop a proper and comprehensive social care system which addresses many of the problems and weaknesses associated with the current regime. This new system should include the following specific elements:

National Assessment—There should be nationally determined assessment criteria which will be used throughout England to assess care needs. Individuals should have the right to have their needs (critical, substantial, moderate and low) assessed and receive the appropriate care from a universal menu of services. At the same time family carers’ needs should also be assessed.

A Comprehensive Service—Individuals and their family carers should be entitled to receive a variety of care services from a range of regulated providers, which will be of the highest standard. There should no longer be a divide between health and social care provision and the process of accessing care will be transparent and easily understood. All services will operate to nationally agreed standards which will be properly regulated and enforced.

Information and advice—Individuals and their carers should be able to easily access straightforward information and advice about their entitlements to services at every stage of their care, and advocacy when required. Whether in the community, care home or hospital, individuals and their family carers should be entitled to receive information which clearly explains their entitlements to care, how to access the services available and their rights as a service user.

Personalised care—There should be a range of care and support services made available that can be tailored to individual personal circumstances and needs. Care and support should be designed and delivered around an individual’s needs through a regulated provider, whilst the responsibility for managing budgets should lie with the local authority or NHS.

Fair funding—Society should share the cost of providing care for those in need. A tax-funded universal National Care Service would entitle individuals to free non-means-tested care, support and accommodation appropriate to their needs.

October 2011

Prepared 13th February 2012