The Centre has been working with the Socialist Health Association (SHA) on a possible new policy for social care. This draft document is for discussion and is not SHA policy.
This paper is the result of discussions with the Socialist Health Association (SHA) it does not represent official SHA policy, but it is published both to aid discussion and offer one possible way ahead and to support the Centre for Welfare Reform's submission to the Communities & Local Government Select Committee Inquiry on adult social care.
The system to support disabled and older people who need on-going support and assistance (or long-term care LTC) is weak and fragmented. Not every country in the UK is the same, but in England it is divided between:
As this list implies, overall leadership in LTC is entirely absent, with DCLG, DWP, ODI, DoH and DfE all having confused nominal leadership roles. However, since the introduction of the austerity policies that have targeted long term care, central government has tried to increasingly evade all policy leadership and treated the issue as one that is merely a matter of local implementation.
Local government, particularly in England, has been radically cut since 2010. This has led to deep cuts to adult social care (well in excess of 30%) and severe cuts in other local services. While there has been much talk of ‘integration’ of health and social care for over 25 years, much of this appears to be a policy smokescreen to disguise the level of organisational confusion.
To date the severe cuts in social care have not gained the attention of the media or the general public. The human rights of disabled and older people have been ignored and the system has been treated as of marginal relevance to mainstream political debate.
The system is also out-of-date in its assumptions about what people want and need. It tends to reinforce negative images and assumptions about disabled and older people:
The following proposals provide a framework for leaving behind this ineffective, and often toxic, legacy, and redesigning the welfare system so that it properly respects our human rights and the unique value of all human beings, no matter their age or impairment.
In the future policy must reflects the need for the UK to create a system which is consistent with its responsibilities as a signatory to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) which includes a universal right to the support necessary to enable independent living (Article 19). If the UK Government took seriously its human rights responsibilities this would revolutionise our approach to long term care.
The five key principles for any future system of long term care must include:
In addition, If the UK were to apply these principles then it would be more in line with current developments across OECD countries:
“On equity and efficiency grounds, a majority of OECD governments have set up collectively financed schemes for personal and nursing care costs. Many are also moving towards universal entitlements to coverage of LTC costs.” [ OECD (2011) Help Wanted?: Providing and Paying for Long-Term Care. OECD.]
Similarly the UK would also be in line with an international trend from Canada, the USA, Australia, Scandinavia and Eastern Europe to shift more power and control to citizens themselves rather to merely place people within services, minimising control and opportunity to exercise citizenship.
Any future policy should be developed in partnership with and with support of disabled and older people themselves. In particular the National Pensioners Convention (NPC) and other groups led by disabled people must be central to the definition of any detailed proposal.
Future policy must be based on human rights and the UN Convention on Rights of Persons with Disabilities (UNCRPD). The Convention reinforces the social model. It assumes that all disabled and older people, no matter their age, condition or impairment, have full human rights and must be supported to be independent and contributing members of society - equal citizens.
The foundation stone of any future policy must be full social commitment to the creation of a robust, enforceable, universal entitlement to the support necessary for independent living. This right would exist for people of all ages. In effective the whole of society would guarantee to set aside the resources necessary to make sure that any of its members who needed extra support to participate as an equal would receive that support.
This right would extend to all people needing on-going support. It would include support for disabled people regardless of age or impairment (people with physical, sensory or cognitive impairments). It would include all people needing on-going support because of their mental health or chronic health conditions. It would include children’s social care and support for people who are at the end of life.
The purpose would be to create a universal and flexible system that replaces most of current social care provision, but which would also include significant elements of NHS funded services (e.g. Continuing Healthcare, Mental Health provision and other NHS services that need to be personalised and designed with and around the on-going needs of the person). This system would replace the current systems of personal budgets and personal health budgets and would dissolve the distinction between them.
There would also need to be in place an infrastructure of services to support people with information, advocacy, social work and nursing expertise and support to manage entitlements. Public and private services will need to be fostered to ensure that any individual entitlements were convertible into effective support.
Means-testing is deeply problematic. Some (although not all) personalised support is heavily means-tested (adult social care), some is not means-tested (children’s social care and NHS funded support). There is no obvious moral reason for this distinction and there is next to no meaningful capacity for people to insure themselves against any of the costs that come with impairment or long-term illness.
A new system would ideally have no means-testing whatsoever. However some limited form of means-testing may be reasonable when people are giving up their home in order to enter some form of state funded residential care home. In this case, and in this case only, their home (or some portion of their home) could become the property of the government. [This policy could extend, as it does in France, to place a responsibility of children to take responsibility for their parents. In this case, if children then put their parents in a home then this charge on the parent’s home would extend to the children’s home - this would end the current incentive for parents to give away their home or wealth in order to get ‘free care’ should this happen which is now common practice.]
The right to personalised support to achieve independent living would be delivered through a balance of individual entitlements and community-based support, made up of the following elements:
Support arrangements, in a healthy system, will not be static. They would change over time as citizens, communities and local leaders innovated, identified and shared best practice. This system would also end the need for current procurement and tendering systems. The current practice by which disabled people are ‘sold off’ to the lowest possible bidder must come to an end.
Internationally there are significant differences in how such systems are organised. The UK is currently one of the most centralised welfare states in the world and this tends to reduce innovation and citizen participation. However there is an understandable desire amongst from many advocates to seek a centralised solution for social care because central government protects its own services first (e.g. NHS) while imposing cuts where it is less likely to be accountable (e.g. local government and social care).
This is a contested issue in the world of disability. The policy of direct payments was first developed by disabled people and local government working together in Hampshire in the 1970s. However the Independent Living Fund (an agency run by the DWP) which has just been closed down in England (although maintained in Scotland) was a very effective system for many. Likewise internationally there is a tension between more local or centralised approaches to meeting the right to independent living.
Options include:
The system should be organised with the right set of incentives to encourage innovation and community development and avoid undue regulation or bureaucracy.
There is also a strong case for removing the function of adult social care from the control of the Department of Health and children from the control of the Department of Education. Instead they could be the responsibility of the Department for Communities and Local Government. The current system continues to diminish the importance of social care and focuses on other priorities.
One of the major failings of the current system is the fragility of individual and collective rights. Within local communities people have only the weakest notion of their entitlements and as the cuts programme began most charities, who are now highly dependent on central or local government funding failed to mount any defence of people’s human or legal rights. Any new system must be underpinned by legal and advocacy systems that protect people form this kind of systemic abuse.
There have been a wave of failed initiatives to calculate the cost of ‘social care’ and to determine suitable systems of funding. It is vital to create a sustainable system of funding to underpin rights created by the new system. Instead of building on a failed system and the assumption that residential or nursing care is the default model for support we need a fundamentally different approach to the economics of independent living:
This issue is also important to the definition of eligibility. Currently the system has made it very easy for people to be deemed ineligible for support, however significant their needs. A new system will seek to enhance contribution and connection by all citizens.
These changes need to be considered in the context of wider changes in policy. In particular it is clear that if communities become more welcoming places and if all citizens benefit from the right balance of rights and responsibilities then the whole system becomes stronger and more sustainable. Here are some examples of beneficial changes that would make independent living a reality:
What is outlined above is a reasonable policy for a wealthy society in the early years of the 21st Century. The fact that it may seem ‘ambitious’ is that we have not yet created the necessary conditions to make it seem reasonable. To do this we will need to see:
None of this is impossible. These kinds of changes were achieved by the Every Australian Counts campaign and are leading to the most substantial international effort to support the human rights of disabled people. There is no reason why the UK could not do something similar.
Publisher is the Centre for Welfare Reform.
Potential New Policy for Social Care 2016
local government, politics, social care, Article
