This is a draft policy not yet agreed.

Social care policy has been subject to much muddle, tinkering and the perpetual promise of a fairer funding system – a promise which is never fulfilled. Now is the time to end the confusion and create a social care system that is fit for the 21st century and which is in harmony with the socialist principles which underpin the NHS.

This policy proposal offers a solution which is fair, sustainable and which would be hugely beneficial to all citizens and families across the country.

The three key elements of the proposal are:

  1. Fund a universal system and end means-testing – Social care must be put on the same footing as healthcare, funded from general taxation, with resources distributed fairly, only on the basis of need.
  2. Invest in citizenship and community – Social care must offer support that people and families can shape to their circumstances, and that helps people contribute as citizens and strengthens family and community life.
  3. End privatisation and the complexity of the current system – Social care must be integrated into one national system that invests resources locally and ends the wasteful procurement systems that currently undermine human rights.

The problems in social care grow ever deeper as the case for reform grows stronger:

  • Deep cuts in funding mean that 40% fewer adults are supported than in 2009.
  • Cuts to children’s social care are combined with growing numbers going into ‘care’.
  • Vicious means-testing systems push people into poverty in order to get care.
  • Funding for local government (council tax and business rates) is not a sustainable base for social care.
  • Individualised funding has become a confused mess of competing schemes, like personal health budgets.
  • People are not offered flexible support, instead they are encouraged to take their budgets as cash and employ your own staff, even when this is burdensome.
  • The regulatory system doesn’t work, rarely spotting abuse and undermining good practice.
  • Procurement rules push privatisation and discourage local community investment.
  • The system treats people as consumers, not citizens, undermining solidarity.
  • The system fails to respect the demands of the UN Convention on the Rights of Persons with Disabilities.

Background

The distinction between health and social care was created by the Thatcher reforms of the early 1990s and the term ‘social care’ is now commonplace, however it is rarely found in other countries and it can be more confusing. It may be more useful to think instead about the overall system to support disabled and older people who need on-going support and assistance and to call this Long Term Care.

Confused leadership

If we examine the organisation of Long Term Care in the UK we find it is confused, weak and fragmented. Not every country in the UK is exactly the same, but in England responsibility is divided between 5 different government departments:

  • Department for Communities and Local GovernmentDCLG – local government and housing related support
  • Department of Health – DH – adult social care
  • Department for Education – DfE – children’s social care
  • Department for Work & Pensions – DWP – disability benefits
  • Office for Disability Issues – cross department leadership (in practice junior to DWP)

Since the introduction of austerity leadership has deteriorated further as responsibility for policy problems has been pushed onto local authorities or NHS organisations.

Fragmented funding

Furthermore these departments oversee a variety of funding streams for Long Term Care, managed in a number of different ways:

  • Children’s social carestatutory responsibility, managed by local government
  • Adult social care for working age disabled peoplealso a statutory responsibility, managed by local government, but subject to different legislation
  • Adult social care for older peoplealso managed by local government
  • Continuing Health Care for people with chronic health conditions – managed by the NHS
  • Mental health services – managed by mixture 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
  • Independent Living Fund – The coalition Government closed down this national scheme that allowed some disabled people to get a budget for personal assistance but the scheme has been maintained in Scotland and Northern Ireland.

The overall level of public funding available for Long Term Care is certainly much higher than the £19 billion currently spent via local government. However the precise level will depend on which NHS or other services are treated as part of the Long Term Care.

Ongoing crisis

Local government, particularly in England, has had its funding savagely cut since 2010. This has led to deep cuts to adult social care, with about 40% fewer people receiving social care now than in 2009.) There have also been severe cuts in other local support services.

The severe cuts in social care have not gained the attention of the media nor the general public. Although the 2017 budget saw talk of additional funding for social care for the first time since 2010. Instead of genuine funding reform there has been much talk of theintegrationof health and social care for over 30 years. However much of this appears to be a policy smokescreen. These Better Care Fund arrangements seem to be an inadequate cross-subsidy from the NHS to social care and there is no evidence that they have led to any significant innovations or meaningful reform.

The human rights of disabled and older people have been persistently ignored and the system has been treated as of marginal relevance to mainstream political debate. In fact the current system is also out-of-date in its assumptions about what people want and need and 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.
  • The problems in social care are seen as causing problems for the NHS rather than being treated as problems in their own right.
  • While there is much talk of ‘personalisation’ mostly people are forced either to accept inflexible services ‘commissioned’ by statutory bodies or to take on the often onerous responsibilities of managing a ‘direct payment’ (receiving their budget as a cash payment and often employing their own support staff).
  • There is 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.
  • Instead of respecting people as citizens and family members, with something to contribute, the system has adopted a consumerist ideology which is misplaced and wasteful.

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

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 key principles for any future system of long term care must include:

  1. Universal coverage – The need for Long Term Care 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. 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 Long Term Care 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 than to merely place people within services, minimising control and the opportunity to exercise citizenship.

long term care

Proposals in more detail

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.

2. Human rights

Future policy must be based on human rights and the UN Convention on Rights of Persons with Disabilities (UNCRPD). The Convention confirms 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.

Currently the UK is a signatory to the Convention but since 2010 it has been extremely negligent in meeting its international human rights responsibilities. For instance, in 2016, the UN Committee on the Rights of Persons with Disabilities reviewed the UK Government’s policies and stated:

“…there is reliable evidence that the threshold of grave or systematic violations of the rights of persons with disabilities has been met in the State partyThe core elements of the rights to independent living and being included in the community, an adequate standard of living and social protection and their right to employment have been affectedfreedom of choice and control over their daily activities restricted, the extra cost of disability has been set aside and income protection has been curtailed as a result of benefit cuts, while the expected policy goal of achieving decent and stable employment is far from being attained.

Any future policy for Long Term Care must make commitment to clear and enforceable human rights central to its strategy.

The foundation stone for this 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.

3. Universal 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 childrens social care and support for people who are at the end of life.

The purpose would be to create one single, universal and flexible system to replace much of current social care provision, and also to include only those elements of NHS funded services that would genuinely benefit from being converted into flexible entitlements (e.g. Continuing Healthcare, and some mental health provision). This system would end the system of Personal Health Budgets and make clear that means-testing, charging and private insurance has no place in the modern welfare state.

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 their entitlements. Local community support would need to be established to ensure that any individual entitlements were convertible into effective support.

4. Means-testing

There is no moral case for applying means-testing to social care and the impact of the vicious levels of means-testing in the current system are highly toxic:

  • People with higher incomes or assets get no benefit from social care and have no interest in supporting it through the ballot box or by taxation.
  • People on modest incomes or with assets are tempted to give away what they have to family or to spend their resources in order to become eligible for social care.
  • People who are eligible for support are discouraged from earning additional income if they can, as this means they will lose their social care support.
  • Means-testing is carried out using an expensive and cumbersome ‘charging system’ often raising no more money that the system costs to implement.

Already the system is confused. Children and families are not means-tested, but adults are means-tested. People needing adult social care are means-tested, but if their needs are re-assessed as ‘health’ needs then they stop being means-tested. None of this makes any sense and it often undermines the possibility of effective joint-working or integration between health and social care.

Self-funders currently spend about £10 billion on care, which is 0.5% of GDP. In essence this policy can be funded by asking people to pay a very small tax increase in order to cover themselves against the risk of having to pay for their care privately and potentially losing all their assets. A similar policy change in Australia involved the introduction of a hypothecated tax in order to pay for all fully funded universal system for working age adults. It was introduced by the recent Australian Labour government and was so popular that the incoming Liberal government was not able to touch it.

5. 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:

  • Flexible and individualised services, provided by statutory and local community organisations
  • People being able to manage their own budget or choose their own support if they want
  • 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 will change over time as citizens, communities and local leaders innovate, identify and share best practice.

This system would also end the use of procurement and tendering systems, which have had a very damaging impact on local statutory and community services. Currently services for disabled people are put out to tender and people are sold offto the lowest possible bidder.

The only way to avoid being part of this inflexible system is take your budget as a direct payment and about 25% of adult social care is organised in this way. But this is often neither feasible nor advisable, and it can bring many additional burdens. In practice there are IT systems available which could replace the current mess of contracting, invoicing and payment systems and which could make flexible services possible for everyone. In fact the NHS currently owns 50% of PHB Choices, and it (or some similar system) could easily be developed to provide a coherent solution for the whole system – giving people choice and control but not forcing people to use direct payments.

6. Organisation

A renewed system for Long Term Care needs to have clear and coordinated leadership at a national level, combined with the right kinds of being decisions being made at an individual, practitioner or local level. There are a number of ways this could be achieved and much would depend on the details of how any further devolution of powers in the UK might work, however an outline proposal is as follows:

  • Overall national leadership for Long Term Care could move to DCLG
  • Local communities would receive a ring-fenced Long Term Care budget calculated on the basis of need
  • Local community support systems would be organised through local government, in partnership with NHS agencies
  • Assessment of entitlement and setting of budgets would be organised locally
  • Individual budgets for people would be portable, flexible and clear

This system would combine fairness with good governance and positive incentives.

7. 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, now highly dependent on central or local government funding, failed to mount any defence of peoples human or legal rights. Any new system must be underpinned by legal and advocacy systems that protect people form this kind of systemic abuse.

8. 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
  • Support families, who already provide over 80% of care in practice
  • Minimise the bureaucracy and regulation built into the current system
  • Avoid 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. Systems like local area coordination, or a renewed focus on community social work, would provide a better basis for building a sustainable system than the current care management system, that was imposed on local government by Mrs Thatcher.

9. 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, a 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 lifepolicies 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

Conclusion

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 ambitiousis 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 do something similar.

This paper was produced by Dr Simon Duffy on behalf of the Socialist Health Association on 21st April 2017

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