The Dilnot Report was published in July 2010 by The Commission on Funding of Care and Support, chaired by Professor Andrew Dilnot. The report, which sought to set out recommendations for an affordable and sustainable funding system for care and support for all adults in England, both in the home and in other settings, is available at http://www.dilnotcommission.dh.gov.uk/our-report/
The report includes the following proposals:
- Individuals’ lifetime contributions towards their social care costs – which are currently potentially unlimited – should be capped. After the cap is reached, individuals would be eligible for full state support. This cap should be between £25,000 and £50,000. We consider that £35,000 is the most appropriate and fair figure
- The means-tested threshold, above which people are liable for their full care costs, should be increased from £23,250 to £100,000
- National eligibility criteria and portable assessments should be introduced to ensure greater consistency
- All those who enter adulthood with a care and support need should be eligible for free state support immediately rather than being subjected to a means test.
The Commission estimated that its proposals – based on a cap of £35,000 – would cost the State around £1.7billion.
As a key part of its work, the Dilnot Commission issued a Call for Evidence, to which this was my response.
Do you agree with the Commission’s description of the main challenges and opportunities facing the future funding of care and support?
The human rights framework contained within the Human Rights Act and the UN Convention on the Rights of Persons with Disabilities form the foundation for the provision of independent living support. Independent living support is a basic human right and is fundamental to equality for disabled people. This issue should have been at the very beginning of the call for evidence and its absence (apart from a brief reference towards the end of the document) makes me very concerned that the commission is not basing its work on the right foundation. The following points in relation to human rights are relevant but not exhaustive:
- ‘Charging disabled people for essential life and limb support is contrary to article 19 of the UN convention on the rights of disabled people to live independently and be included in the community’ – this is taken from Baroness Campbell’s response to Kingston Council’s current proposals to increase care charges (see local campaign website at www.janeyoung.me.uk).
- Right to life – for many severely disabled people, independent living support is what keeps them alive, by enabling them to undertake their most basic bodily functions.
- Right to family life – independent living support is essential to enable disabled people to take their natural role within their family – as a husband, wife, parent, sibling etc. Relying on a husband or child for care changes the relationship from a natural family relationship to one that is necessarily made one-sided and compromised by the inappropriate dependence of the disabled person on his or her relative.
- Right to privacy – disabled people’s right to privacy is violated by the current means testing used to decide what people should pay for their support. Many disabled people feel this very acutely as most other areas of their lives, including their intimate care, is out in the open; they particularly wish to retain privacy and control over their finances as they lack such privacy in other areas of their lives.
Do you agree with the Commission’s description of the strengths of the current funding system, and its potential shortcomings? Do you think there are any gaps?
Poor integration between health and social care
One major weakness of the current system, speaking as a social care service user myself, is poor integration between health and social care and a lack of understanding between these agencies of the best way to assess needs and meet them, particularly in relation to expensive items of equipment. Many disabled people have to pay for their own specialised equipment because the restrictions imposed by health and social care either make them ineligible for equipment they can demonstrate they need or make life unworkable. For instance, a severely disabled person in Kingston who asked if the Primary Care Trust could fund an electric bed said they would only do so on the understanding that a district nurse would need to visit every day and that the timing of such a visit could not be predicted. As this meant the service user would be unable to get to work (he works full time despite being unable to most parts of his body)!
High charges undermine the aim of prevention
High charges for independent living support, which are almost universal as council budgets are squeezed, do not assist the prevention agenda, as people decide to go without support, their condition deteriorates and they end up costing the public purse more in the long run. Providing independent living support prevents people’s condition deteriorating and enables them to take a full and productive role in the community.
Fairness and equality
There are serious equality issues with the current system that effectively punishes disabled and older people for needing support for no fault of their own. It is puzzling that these equality issues have not been addressed in recent equality legislation and guidance. The main issues are as follows:
- Charging people for independent living support results in disabled people having much less control over their own money than non-disabled people have. This is a major equality issue.
- Charging people with high level needs more for their care is deeply unfair, as people do not choose the level of care they need.
- Charging for independent living support means that disabled people are unable to have the same aspirations as non-disabled people – eg to own their own home, to improve their home, to save for their children, to safeguard their future by being prudent and saving etc. This is because the Dept of Health guidance allows councils to leave service users with very little income and savings
- Current systems of charging for independent living support do not take into account the way in which such charging compromises life chances and leave disabled people in a significantly worse financial position than their non-disabled peers.
Given the problem we have articulated what are your suggestions for how the funding system should be reformed?
Evidence base for suggestions
In the Royal Borough of Kingston upon Thames during late 2010 and early 2011, a high profile campaign has been staged against the council’s proposals to make huge increases in charges for non-residential social care services. The campaign has gathered a number of responses from service users and their families of the harm that will be done if the proposals are approved in February. These responses are available on the campaign website at www.janeyoung.me.uk and are relevant to this call for evidence as they address themselves to a proposal to increase charges for independent living support.
The campaigners also went out on the streets of Kingston and New Malden to gather support and signatures for the petition. There was huge public support for the campaign from people who were horrified that councils can charge such huge amounts for basic support with getting up in the morning, using the toilet, washing, dressing, eating, drinking and going to bed. Several passers-by said they would be happy to pay more tax so that disabled people who need support would not have to pay these charges.
Independent living support should be paid for by everyone, not just current users
Many service users strongly reject the argument that the country cannot afford universal social care support free at the point of need. It should be remembered that we are all subject to much lower tax rates than we were in the 1970s and that despite widespread poverty the UK is not a poor country. People don’t choose to need social care any more than people choose to need healthcare. In terms of priorities, the ability to function at a basic level, eg to get out of bed, get dressed, washed, eat, drink etc is much more important than many of the activities government spends its money on. For example, theatres and art galleries are nice to have and enhance people’s enjoyment of life, but they are of little use if people are denied the ability to get out of bed or leave their own homes.
Contributions must be compulsory
Any system of voluntary contribution will not work as people are not good at anticipating future need – as is demonstrated by the low level at which people fund their pensions. Any system of voluntary contributions will lead to a situation where those who do contribute effectively pay twice – because, in a civilised society, the poorest, who have not made contributions but who have a critical need for support, will not be abandoned, so their care will be paid for by those who have paid into the system.
Fairness and realism demand that any system for funding social care must be paid for by everyone. No-one knows whether they will fall ill or be injured, and a large proportion of very old people need some kind of support towards the end of their lives. This does not mean that the payment has to be in the form of taxes; so long as there is a comprehensive, affordable but compulsory contribution system in place, whereby people pay in according to their means, the system could be run on an insurance basis.
There is still an important role for disability benefits
There is always a place for benefits to be paid to people to go some way towards meeting the extra costs of disability, regardless of the adequacy of social care. This is because cash payments give people the maximum control over how they meet their needs and because no system of social care will be able to meet everyone’s disability-related needs and not all people with disability-related needs will need social care support. Therefore any future social care funding system must not absorb the whole of people’s disability living allowance (or personal independence payment) or attendance allowance.
Social care should be funded nationally and delivered locally within a national framework, to enable geographical mobility and clear accountability
The argument that provision should vary across the country does not recognise the reality of 21st century life. Globalisation, effective transport systems, the nature of the labour market and modern expectations of geographical mobility mean that disabled people, like anyone else, may want or need to move to another part of the country for work, to be near family or for other reasons. What they pay for their support and the level of support they receive should be consistent, albeit delivered locally. National provision will also help avoid the situation where national and local government blame each other if there is insufficient resource for care services in a particular area – this buck-passing achieves nothing.
Whilst the call for evidence states that nothing will be ruled out, we need to watch carefully as most politicians appear to want to rule out the option that most service users, many of the organisations supporting them and many members of the public favour – ie a system that works in a similar way to the NHS – free at the point of use and paid for by everyone through their taxes (or possibly an alternative form of compulsory contribution). Support for independent living, which is what social care should actually be in 21st century Britain, is at root an issue of human rights and equality and there is no good reason why it should not be funded in the same way as other essential public services.
Retired Disability Equality and Access Officer
User of local authority independent living support in the form of a personal budget