Charging for care

Summary

The issue of funding of care and support affects everyone with dementia, their carers and families. The Society has campaigned for many years to end the 'dementia tax' - where every year tens of thousands of families are left to pay all their care costs whilst other diseases are paid for by the NHS. In addition, people with dementia and carers are paying for services that often do not deliver good quality care. Alzheimer's Society has found that people with dementia are willing to make a contribution towards the cost of care but want a system that clearly and fairly shares the cost of care between the individual and the state.

In July 2012, the Government released a white paper on Social care accompanied by a 'progress report' on funding. This stated that the Government agreed with the principles of a higher means test and cap for care costs suggested by the Commission on the Funding of Care and Support , chaired by Andrew Dilnot. However, the Government stated that it was unable to commit to funding a new system this at this stage. It stated that funding reform needed to be considered alongside other priorities and a decision was delayed until the next Spending Review.

Alzheimer's Society believes that by deferring a decision about funding until the next spending review the government is missing a historic opportunity to improve social care.

Background

Charging for care affects people with dementia and carers more than older people with other medical conditions. Despite dementia being a physical disease of the brain, most of the essential care required as a result of the disease comes from social services, such as helping people to wash, eat and use the toilet. Dementia can last for many years and unlike NHS care, social care is means tested (a process of assessing a person's finances to see if they are eligible for help with the cost of care). This can mean significant bills for care.

From talking to people with dementia and their families we have found that people with dementia are willing to make a contribution towards the cost of care but want a system that clearly and fairly shares the cost of care between the individual and the state. Equally important is that people are able to access more and better quality care services in return for paying a contribution.

The costs of caring are significant. Many carers face financial hardship, often forced to give up work and pay high care bills from limited income or private savings. This is despite the fact that carers of people with dementia save the UK public purse £8 billion every year. Carers must be supported by a more generous disability benefits system.

Government policy has promised better services and support for carers. This must become a reality. Without formal commitments and funding for a better deal for carers, an increasing number will be unable to continue caring and pressure on the long term care system will be immense.

The Dementia Tax

In 2008, the Society published 'The Dementia Tax' which described how charging currently affects people with dementia and their carers. The Dementia Tax found:

People with dementia and their carers are among the hardest hit by the current charging system.

Although unpaid carers deliver the majority of care to people with dementia, many people also need significant amounts of care and support from care services arranged through social services, often for a long period of time. Individuals pay significant amounts towards the cost of this care.
Services for people with dementia are limited and vary considerably in quality.
Charging affects people from all kinds of backgrounds, including those on low incomes because of the means-test thresholds.
The state has a responsibility to make a significant tax-funded contribution towards the cost of dementia and people are only willing to make a contribution if good quality care can be guaranteed.

Alzheimer's Society believes that the current system of social care does not provide a 'safety net', because access to care is extremely limited. A 2010 survey based on Freedom of Information requests found that three-quarters of councils now meet critical or substantial care needs only. This was predicted to rise to 80% by 2011. The Association of Directors of Adult Social Services found that 15 councils tightened their eligibility criteria between 2010/11 and 2011/12. Even before more councils raised their eligibility criteria our Support.Stay.Save (2011) report found that 50% of people with dementia living in their own homes were not getting enough support and care to meet their needs. Although people with very low levels of assets and incomes and very high levels of need are eligible for publicly funded care, the experience of struggling for basic support does not bring to mind a 'safety net' for the majority of people with dementia.

Poor Quality care

The debate on future funding for social care is taking place in a context where people have to pay for care that is often of poor quality. Reports from the Equality and Human Rights Commission (2011), Age UK (2010) and others show that the system is not simply in need of repair but is fundamentally broken. The care workforce whose work is essential for the quality of care is currently largely untrained and unregulated and the current system of regulation is not working. Any new settlement must give equal consideration to improving the quality of care provided. This would support people with dementia and carers to maintain their quality of life, dignity and independence.

There can be no sustainable NHS without reform of social care funding. A lack of support leads to avoidable hospital admissions and then keeps people with dementia in hospital because they cannot be cared for at home. Counting the Cost (2009) found that supporting people with dementia to leave hospital one week sooner than they currently did could result in savings of at least £80milion a year. A new settlement for social care has the potential to enhance the sustainability of the NHS and enable a fair and affordable quality social care system.

The Commission on Funding of Care and Support

The Commission on Funding of Care and Support, chaired by Andrew Dilnot and often called the 'Dilnot Commission' was set up to advise the government on a range of funding options for social care in England and published its report in July 2011. In their report they identify that the current adult social care funding system in England is not fit for purpose and needs urgent and lasting reform.

The Commission made a number of recommendations to address the failure of the current social care system. These include:
Putting a cap on the amount an individual has to pay for care. They suggest that the cap should be between £25,000 and £50,000 and suggest a figure of £35,000. Where an individual's care costs exceed this cap they should be eligible for full support from the state. However, this would not include 'hotel' or accommodation costs which would still cost between £7,000-£10,000 per year.

Currently if an individual has assets (such as savings or their property) over £23,250 they are liable to pay for all of their social care. The Commission recommend that this figure should increase to £100,000.
In residential care, people should contribute a standard amount to cover their general living costs, such as food and accommodation. The Commission believe a figure in the range of £7,000 to £10,000 a year is appropriate.
The Commission recommends that eligibility criteria for service entitlement should be set on a standardised national basis to improve consistency and fairness across England.
The government should invest in an awareness campaign to encourage people to plan ahead. This campaign could be linked into the wider work to encourage pension savings.

The Commission concluded that more needs to be spent on social care, both now and in the future. An additional £1.7billion (at 2011 prices) is needed from the government for a new system, however individuals will also need to contribute to the funding of social care. They believe that their recommendations will help people to manage their contribution better, by helping people plan and prepare for the future, and encourage the development of new financial products. Alzheimer's Society believes that implementing the solutions suggested by the Commission is a minimum to provide a sustainable and fair system.

Dilnot estimated the cost of implementation of his proposals at £1.7 billion. The Dilnot Commission was not tasked with estimating the cost of extending care and support to meet the needs of all those who need it and do not receive it, nor with estimating the cost of improving the quality of care. Alzheimer's Society believes that a "Dilnot Plus" model is needed to do this as implementing the Dilnot proposals alone will not be sufficient to meet unmet need, end the dementia tax, abolish the postcode lottery and improve quality. We urge the government to act on this so that no more of our most vulnerable citizens suffer the neglect and appalling treatment which has been so graphically exposed in recent months.

The 'Progress Report' and White Paper on Social Care

The Care and Support White Paper, published in July 2012, sets out the Government's vision on Social Care reform. This includes measures which the Government say will improve consistency in Social Care, provide more support for carers, provide more information, improve integration of different care, and provide people with more control. However, the Society believes these measures will not ensure the radical reform to social care that is required to improve the accessibility and quality of care.
As the same time, the Government published a 'Progress Report' on funding. The report sets out that the government agrees the principles of the Dilnot Commission's model - financial protection through capped costs and an extended means test - would be the right basis for any new funding model. It is the Government's intention to base a new funding model on the principles if a way to pay for it can be found. However, whilst they suggest that this is the right thing to do, the Government does not commit to introducing a new system at this stage citing the size of the structural deficit and the economic situation the country faces. They suggest that funding reform needs to be considered alongside other priorities and that decisions will be made at the next Spending Review.

The Society believes that by deferring a decision about funding until the next spending review the Government is missing a historic opportunity to improve social care. A fair and sustainable funding settlement is an essential prerequisite to ensuring access, dealing with unmet need, ensuring quality and true personalisation.

The Society campaigns for

Implementation of Dilnot proposals as the minimum, as well as wider debate about how to improve quality, meet the level of unmet need, abolish the postcode lottery and end the dementia tax. There must also be similar action in Wales and Northern Ireland.
A substantial change in the regulation of care so that people paying for care, the taxpayer and the government have greater guarantees about the quality of care they can expect in the future.
A new system that recognises the role of unpaid carers and ensures that they are not financially disadvantaged by caring.