Personalisation and Diversity Issues and Solutions

Policy Review

Personalisation and Diversity – Issues and Solutions

Commissioned by ADASS

Conducted by the London Borough of Hackney

February - March 2009

Introduction

The personalisation of adult social care is part of a wider government public service reform programme. One of the key aims of this programme is to encourage citizens to shape their own lives and the services they receive. All across the public sector, new approaches to empower citizens who use public services are being developed[1]. Adult social care is a major part of this reform agenda, and is key, not only because it affects so many people, but also because it affects many of those who are vulnerable and excluded[2].

The purpose of this policy review is to examine the impact of personalisation on different groups of people. The review focuses primarily on six “equality strands,” which are identified in various pieces of legislation as requiring protection from discrimination.

Public sector organisations must respect equality and human rights in the execution of their functions. This applies not only to employment, but also to service provision. In the context of delivering services, any of the following are likely to amount to discrimination: refusal to deliver a service which would be provided to other people; providing services of an inferior quality or standard, or; offering a service or services on different terms than those offered to other people.

These duties have their bases in the following legislation:

The Race Relations (Amendment) Act 2000

The Disability Discrimination Act 2005

The Sex Discrimination Act 1975 as amended by the Equality Act 2006

The Equality Act 2006

These pieces of legislation impose on public bodies a general duty to promote equality of opportunity and eliminate discrimination. They also impose particular duties, including the requirement to publish equality schemes showing how they intend to fulfil their general and specific duties including assessing the impact of its policies and activities on the people concerned and to produce action plans to ensure that real measurable outcomes are achieved for the communities served.

The statutory bases for the prohibition of discrimination on the various grounds are set out in the Acts listed above, but the protection is not the same in each case.

Race: The Race Relations (Amendment) Act 2000 places on public authorities a duty to promote race equality so as to provide fair and accessible services and improve equal opportunities in employment. This requires authorities to address the disadvantage experienced by people from black and minority ethnic groups in accessing mainstream services.

Gender: The Sex Discrimination Act 1975 (as amended by the Equality Act 2006), requires authorities not merely to treat men and women equally but to demonstrate that they are promoting gender equality. Under the duty authorities also have an obligation to eliminate discrimination and harassment towards transsexual staff and service users, although there transgender people do not enjoy the same level of protection when accessing services. This is expected to be addressed in the forthcoming Equality Bill.

Disability: Under the Disability Discrimination Act 2005, there is a general duty on public authorities to promote the interests of disabled people by eliminating unlawful discrimination and harassment. This includes promoting equality of opportunity and promoting positive attitudes towards disabled people, taking account of people’s impairments, even if this means treating them more favourably and encouraging the participation of disabled people in public life.

Religion and belief: The Equality Act 2006 makes it unlawful to discriminate in the provision of services on the grounds of religion or belief. This also includes discrimination due to a lack of religion or belief. Authorities are not required to provide services that are not normally provided, but they are required to adapt those that are normally provided so that they are acceptable to those of different faiths.

Sexual Orientation:The Equality Act 2006 protects sexual orientation as a ground for discrimination in the same way that the Act protects religious belief, or lack thereof.

Age:There is currently no statutory prohibition against age discrimination in providing health or social care. However, the European Convention on Human Rights (ECHR), which was incorporated into UK law by the Human Rights Act 1998, sets out the rights and freedoms that each citizen should enjoy. This includes the right to freedom from discrimination. This provides strong support for the fair delivery of services to older people. In addition, the National Service Framework (NSF) 1 aims to ensure that older people are not discriminated against in accessing NHS or social care services as a result of their age.

Article 14 of the ECHR states that the enjoyment of the rights and freedoms set out in the Convention shall be secured without discrimination on the grounds of sex, race, colour, language, religion, political or other opinion, national or social origin, association with a national minority, property, birth or other status. Thus, all partnerships and agencies providing health and social care services must act to ensure that human rights and equality are placed at the core of all their policies and practices. It is arguable that age would be considered as a protected ground under Article 14 because of its reference to “other status.”

The Single Equality Bill, which was announced in the Queen’s Speech at the start of this Parliamentary session, but which has not yet received its first reading, is expected to harmonise protection across all 6 equality strands.

These 6 equality strands are those that are protected in law, although regard should also be had for the effect of Article 14 of the ECHR. Authorities should be aware of, and aim to eliminate, discrimination on other grounds, the most obvious of which being income or socio-economic status.

Scope of the Review

This paper draws on the views of a range of organisations which represent the interests of people within those six equality strands, particularly where individual and institutional discrimination has been identified and is recognised as an issue, and therefore needs to be considered when implementing strategies. This review does not seek to evaluate the concept of personalisation or the implementation of the various aspects of it, save where it has been shown to have a differential impact (whether positive or negative) on the different equality strands, or where concerns have been expressed by campaigning/representative organisations that a differential impact may result.

The review considers the broad aims behind the personalisation agenda, the views of a number of stakeholders, academic opinion, current evaluations, lessons learned from international models, current practice in selected authorities across the UK[3] and details of outcomes for specific individuals/groups where information is available. The personalisation process is still at a relatively early stage, so learning from the current programme itself while useful, is limited in its evidence base. This review therefore draws on evidence from analogous initiatives (e.g. encouraging uptake of direct payments), from which learning can be used to inform implementation policies around personalisation. It also seeks to draw conclusions as to the issues/impacts on equality and diversity of the personalisation agenda, and how these might be addressed.

The findings are presented according to the different equality strands, and where the views of external organisations are presented these are referenced. The volume of published information and opinion on this subject is vast, and this paper does not purport to be an exhaustive summary of every report or every organisation’s views. It simply seeks to draw together the work that has been done on this topic, identify key themes, particularly where there is commonality, and make recommendations where appropriate. It focuses primarily on the impact on people accessing services (service users), but in places touches on the issues of carers and the social care workforce, although this is not explored in any detail.

Background and Context

Following a Green Paper in 2005[4] and a White Paper in 2006[5], the joint vision for how this broader agenda should be taken forward in the social care arena was set out in "Putting People First: a shared vision and commitment to the transformation of adult social care[6]". This was a concordat between central government, local government and the social care sector, and set out what needs to be achieved under the umbrella of transformation, with the key emphases being on independent living, choice, control and dignity.

The personalisation of adult social care is based on the core value of “ensuring older people, people with chronic conditions, disabled people and people with mental health problems have the best possible quality of life and the equality of independent living is fundamental to a socially just society[7].” The main driver to this, set out in the paper, is the need to replace “paternalistic, reactive care of variable quality with a mainstream system focussed on prevention, early intervention, enablement and high quality personally tailored services[8].” The principle behind this is the desire for people to have maximum choice, control ad power over the support services they receive, with the right to self-determination being at the heart of the reformed system.

Central to whether these aspirations can be met for all service users will depend on how personalisation is interpreted by local authorities, the level of support from staff for the personalisation agenda, the systems that are in place to enable staff to support service users through the assessment process and in establishing support plans.

The key elements of the transformed social care system are set out in the paper. For ease of reference, they have been reproduced at Annex A.

The emphasis, in the transformed services, will be on people who use social care services, together with their families, designing and commissioning their own services, and being able to choose their own support services using a personal budget. This will put those receiving public funding on a more equal footing with those who fund their own support packages. This is vital from an equalities perspective as the issue of income/social class is often overlooked when considering issues around equality and diversity. It is, however, one of the key determinants of people’s educational achievement, and thus future prospects. In many areas there is also likely to be a disproportionate impact on disabled people, people from BME groups, women and older people, all of whom are likely to be worse off financially.

Thepersonalisation agenda has very clear links with the aim shared by all local authorities to eliminate discrimination in the delivery of services, and to reduce social exclusion. Enabling people to live independent lives and increasing choice and control is one of the central aims of the equalities agenda, and personalising services so that they meet individuals' needs is key to this. Indeed in its recent report ‘From Safety Net to Springboard,’ the Equality and Human Rights Commission set out its views of what the overarching objectives of a reformed social care system should be, namely to: promote the capabilities and autonomy of each individual regardless of means; encourage co-production and partnership to create a sustainable infrastructure of care and support; and identify and communicate the cost-benefits of reform to society as a whole. The same report set out seven key principles, which were developed in order to influence the forthcoming government green paper on the future of social care. Several of the principles are also highly relevant to the personalisation programme and in many respects lie at its heart.

The seven principles are:

1. Care and support based on clear outcomes and founded on human rights and equality.

2. Access to publicly funded care and support based on clear, fair and consistent criteria.

3. Individuals and familiesincontrol of their care and support.

4. The right balance between safety and risk to promote choice and independence.

5.Local strategic partnerships that play a central role in developing and maintaining local care and support.

6. Funding that balances affordability and sustainability with fairness.

7. Equality and human rights law and practice re-calibrated to respond to our ageing society.

Although local authorities do not have control over all these areas, many of them come firmly within their remit, and as such they should consider whether their social care arrangements are based on these principles. Human rights and equality are inextricably linked and are a key theme in social care, given that the rights enshrined in the ECHR include: the right to life[9]; the right not to be subjected to inhuman or degrading treatment[10]; the right to liberty and security[11]; the right to respect for private and family life[12]; the right to freedom of thought, conscience and religion[13]; the right to marry and found a family[14]; and the right not to be discriminated against in the enjoyment of these rights[15].

Findings of the Review according to the six Equality Strands

Many of the organisations which have published material on personalisation are concerned about an underlying agenda to reduce the overall cost of adult social care, particularly given the ageing population and the impact of this on the social care system in coming years. The issue of the cost of social care is not discussed in this paper, but in engaging service users and user-led organisations in the development of person-centred support local authorities will need to be aware of this perception of the agenda, and therefore either acknowledge it or work to counter it.

In order to provide some context, some useful facts and figures are attached at Annex B.

Equality in relation to social care can be viewed and measured in three ways: equality of access to care and support; equality of outcomes from care and support; and the contribution care and support can make to people's equality of opportunity to participate and contribute fully in society[16].

It is important to recognise that there is the potential for discrimination on multiple grounds, and that this is particularly acute for people accessing social care services. A disabled person also has a gender, an ethnicity, an age, a sexual orientation and a belief system, any or all of which may be reasons for discrimination, either by individuals or by institutions. It is therefore important that authorities recognise that each person is an individual andthat while the six equality strands are useful for the purpose of identifying and rooting out discrimination on those grounds, groups of people against whom there is discrimination are not homogenous and each person’s experience will be different. In order to overcome this potential for discrimination, it is therefore important that we achieve personalisation in its truest sense, and that services really are tailored for individuals, with only the highest level of service being offered to everyone, regardless of their ethnicity, gender, age, disability, faith or sexual orientation.

Disability

The Disability Discrimination Act 1995 defined a disabled person as someone who has a physical or mental impairment that has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities.The vast majority of people using care services fall within this definition. For this reason, much of the discussion about discrimination will fall under the heading of disability. Where there are specific issues related to the other equality strands, these will be dealt with separately, under the relevant headings.

The key values set out in ‘Putting People First[17]’ include ensuring that disabled people have the best possible quality of life and equality in relation to independent living. Independent living does not necessarily mean living alone. The government has adopted the following definition and vision for independent living: “Independent living means that all disabled people have the same choice, control and freedom as any other citizen – at home, at work, and as members of the community. This does not necessarily mean disabled people ‘doing everything for themselves’ but it does mean that any practical assistance people need should be based on their own choices and aspirations.”[18] The Commission for Social Care Inspection (CSCI) has recently published a report[19], in which it identified twelve basic needs for independent living[20]. These are:

• Full access to the environment
• A fully accessible transport system
• Technical aids and equipment
• Accessible/adaptable housing
• Personal assistance
• Inclusive education and training
• An adequate income
• Equal opportunities for employment
• Appropriate and accessible information
• Advocacy
• Peer counselling
• Appropriate and accessible health care provision

Disabled people have long viewed the disadvantages they experience as being caused by barriers in society, rather than the differences in people’s bodies or minds. This is the key principle of what is referred to as the social model of disability[21], and is now the generally accepted view[22].