Independent Living and Long Term Care

Social Care

Draft Policy


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:

  • Children’s social care – managed by local government
  • Adult social care for working age disabled people – managed by local government
  • Adult social care for older people – managed by local government
  • Continuing Health Care for people with chronic health conditions – managed by the NHS
  • Mental health services – managed by mix of NHS and local government
  • Palliative and other long-term care and nursing services – managed by the NHS
  • Supporting People funding – managed by DCLG via local government

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 The system is also out-of-date in its assumptions about what people want and need.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:

  • On-going heavy investment in private and charitable residential care, despite the fact that this is not the support most people want
  • Significant resistance to giving people control and flexibility over how they get support, despite a nominal policy of ‘personalisation’
  • Minimal innovation, inclusion or accessibility for disabled and older people in our local communities.
  • Confusion in central government is mirrored by confusion at the local level with responsibilities unclear and fragmented.

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 or human rights and the unique value of all human beings, no matter their age or impairment.


Key principles

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:

  1. Universal coverage – The need for LTC is part of the normal risk of life and should be treated just as health and education.
  2. Maximum risk-pooling – The most efficient way of insuring ourselves against the costs of impairment or frailty is to all pool resources in order to cover that risk, as with the NHS.
  3. Equity – the system should be equitable and should not discriminate against people because of condition, age or geography.
  4. Entitlement – All citizens should benefit from the system and should not be disadvantaged by income or ability to pay. Ideally the system should be funded from general taxation and be free at the point of use, as with the NHS.
  5. Control – All citizens should be able to get the right flexible support to meet their needs, to be able take the level of control that is right for them and their families.

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.Our proposals

  1. Partnership

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.

  1. Rights

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.

  1. Independent Living

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.

  1. Scope

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.

  1. Means-testing

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.]

  1. Delivery

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:

  • Direct payments, flexible budgets directly controlled by the person or their representatives
  • Individual Service Funds, flexible budgets managed by an agency chosen by the person
  • Services (e.g. residential care) if people choose to use their entitlement in this way.
  • Peer support and community-led systems of support
  • Independent advocacy and information services
  • Social work and professional advice

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.

  1. Organisation

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:

Option 1 – Create one national body to manage all individual funding, perhaps leaving local community development functions to local government.

Option 2 – Fund the system nationally, but organise delivery through local government, distributing the national pot through local government.

Option 3 – Fund the system locally, but transfer NHS and other central funding to local government.

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.

  1. Advocacy

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.

  1. Economics

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:

  • Focus on the costs of exclusion versus the benefits of inclusion and contribution
  • Avoid the crisis and cost inflation caused by high eligibility thresholds
  • Minimise the bureaucracy and regulation built into the current system
  • Avoid if possible the direct and indirect costs of means-testing
  • Build on current investments within the NHS and local government

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.

  1. Wider policy change

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:

Housing policy – more accessible properties and robust and flexible housing entitlements

Social security policy – more income equality, lower benefit reduction (marginal tax) rates (or even better basic income) and greater acknowledgement of the increased living costs for disabled people and families

Education policy – more inclusion innovation at every level of education

Health policy – protection from eugenic or prejudicial ‘end of life’ policies and a commitment to the equality of all

Employment policy – greater protections and support for disabled employees to achieve and maintain jobs, greater support for families who take on caring responsibilities


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:

  • More opportunities for disabled and older people to lead the way in making the case for change
  • An effective alliance, led by disabled and older people, but embracing families and professionals
  • Clear communication of the key messages and universal benefits of this new approach
  • Support from and for politicians with the vision to back these changes

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 of something similar.