Section One: Introduction
1.1. What do we mean by self-directed support?
Self-Directed Support ( SDS) is the support individuals and families have after making an informed choice on how their Individual Budget is used to meet the outcomes they have agreed. SDS means giving people choice and control.
The process for deciding on support through SDS is through co-production.
Co-production in SDS
Support that is designed and delivered in equal partnership between people and professionals.
Before agreeing a support plan, supported self-assessment is used to help people think about their important outcomes. As part of the assessment people will discuss the budget available towards meeting these outcomes. The main purpose of the process is to give people more control over how their support needs are met, and by whom.
The mechanisms for getting support through SDS can be through a Direct Payment ( DP), or through the person deciding how their individual budget is allocated by the council to arrange support from a provider. This is sometimes referred to as an Individual Service Fund. Support can be a combination of these. Direct payments can also be managed by a third party.
Some people may choose to leave the decision on how their support is provided to the council. Self-directed support allows people to make an informed choice not to take control of all of their arrangements. The strategy throughout promotes self-directed support for all, but it should not be imposed on anyone. There is a duty of care on local authorities, and self-directed support does not dilute that.
1.2. Core values and principles of self-directed support
SDS and all public services are subject to Human Rights and Equalities legislation.
The fundamental principles of SDS are choice and control. Choice is evident where people are able to choose how they live their life, where they live and what they do. People have control of their support by determining and executing the who, what, when and how of the provision.
Human Rights Principles
Equality and Non-discrimination: All individuals are equal as human beings and by virtue of the inherent dignity of each human person.
Participation and Inclusion: All people have the right to participate in and access information relating to the decision-making processes that affect their lives and well-being.
SDS demonstrates the Human Rights Principles above through:
Everyone, no matter what level of impairment, is capable of exercising some choice and control in their living, with or without that choice and control being supported by others
Everyone is treated with dignity at work, at home and in the community
Everyone is an equal citizen of the state and has the right to live life as fully as they can, to be free from discrimination, and to be safeguarded and protected.
The Scottish Government proposes to introduce a Self-directed Support Bill to the Scottish Parliament, and the Bill will include guiding principles. Should a Self-Directed Support Act be passed by the Scottish Parliament, implementation of this strategy will be guided by the principles within it.
Social care research has shown that the values that need to be sustained in any reconfiguration of social services are those which have a consensus among stakeholders.
Successful implementation of this policy depends on a clear values framework that is commonly understood and that reflects a co-production approach. The operation in practice of these values needs to be determined by the end user of SDS. As such, a final values framework needs to be developed to inform the implementation action plan and the work that flows from it. The following values are considered to apply to the overarching principles and are examples of what might be included in the framework to be developed under Recommendation 1:
Everyone is treated with respect
Everyone is provided with unbiased information about the choices available to them; and is treated in a manner which befits and benefits their individual circumstances. Fairness is in terms of the individual, not the group or society at large
Everyone is supported to maximise their aspirations and potential.
Support focuses on the prevention of increasing dependence and enablement, or re-ablement
Everyone is supported to participate freely in all aspects of society, in the same way as other citizens
Everyone is supported to feel safe and secure in all aspects of life, including health and wellbeing; to enjoy safety but not be over-protected; and to be free from exploitation and abuse.
The National Implementation Group should produce a values framework which articulates how to achieve effective co-production of both individual and collective outcomes for the policy. A communication strategy should include specific action to make information about eligibility criteria available to all.
SDS is often described as the personalisation of social and health care. There are three Changing Lives Reports which defined the Scottish Government's position on personalisation. These are:
- 'Personalisation: A Shared Understanding'
- 'Commissioning for Personalisation' and
- 'A Personalised Commissioning Approach to Support Care and Services'.
The Association of Directors of Social Work ( ADSW) paper on Personalisation 1 sets out their position on the personalisation of social work services. Personalisation was defined by the Changing Lives service Development group as:
'enabling the individual alone, or in groups, to find the right solutions for them and to participate in the delivery of a service. From being a recipient of services, citizens can become actively involved in selecting and shaping the services they receive.'
The growing terminology used to describe this shift in culture and practice, from the earlier development of direct payments to more recent SDS approaches, has given rise to confusion on what is intended. Indeed there has been a separation of long-standing direct payments practice from personalisation activity in some areas, adding further to the sense that they are distinct and disconnected. Critically the debate needs to be about improving outcomes for citizens, by providing choice, control and independence, through safe, sustainable and economically viable responses to support planning and provision. Ironing out the substantial current barriers to uptake of direct payments will need to form a key part of that debate.
A literature review 2 of the barriers and facilitators to SDS identified the variety of definitions of personalisation, self-directed support and individual budgets currently in use. This strategy therefore includes definitions of the key terminology that is relevant to SDS development in Scotland. These and other terms are set out in the Glossary at Annex 1.
Direct payments were the first step in giving individuals real control by allocating a budget which can be used to either purchase support or to employ a personal assistant. Scottish Government statistics show that in the year to 31 March 2010, 3,678 people in Scotland had direct payments. Research evidence shows that taking responsibility for the financial management of the budget is a deterrent for some people, particularly where there is no support system to help with this responsibility.
This strategy therefore aims to build on the improved outcomes for users of direct payments. It sets goals for a shift to a system where there is broader choice and control for people accessing health and social care and support, with or without taking direct control of the cash. The Action Plan for the implementation of this strategy will need to address the strategic planning, workforce development recruitment and retention, and regulatory implications for this shift.
ADSW acknowledges the crucial role of SDS in personalising social work services through processes that transfer power to citizens. The processes will evolve over the 10 years of this strategy, and will be adapted and refined to keep up with the technological, legislative and the policy developments. Implementation therefore has to constantly review practice to ensure the key aims of SDS (choice and control) are central to the systems and processes that develop around it.
1.4. Policy context
Policy and legislative developments in Scotland (and elsewhere) have increasingly focused on the personalisation of services, reflecting the shifting expectations of people in society today, where they will be able to exercise choice and control over any support they may need.
Direct payments for social care have enabled people who use them to achieve greater independence. The origins of direct payments are in the Independent Living movement in the US and were led by a group of disabled activists in Hampshire in a UK context. Significant steps have been made since then to deliver very flexible direct payment packages.
The Independent Living movement remains a driving force for equality amongst all citizens and empowerment of individuals. The Convention on the Rights of Persons with Disabilities which came into force in 2008 marks a "paradigm shift" in attitudes and approaches to people with disabilities. It views individuals with disabilities as "subjects" with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society. The Changing Lives report 3 considered the role of social work in supporting this change, not just for disabled people, but for all who require care and support.
Details of current legislation providing for direct payments in Scotland are set out in Annex 4. In summary, Scottish local authorities have a duty to offer a direct payment to eligible people assessed as needing community care services, and can be used to purchase all defined community care services and support, except long term residential accommodation.
Research evidence 4 demonstrates the benefits of direct payments, and over recent years the Scottish Government has promoted these to a wide range of individuals.
Targeted consultation lead to comprehensive guidance highlighting the benefits of direct payments to children and families, older people, and people with mental health problems.
Recent developments in self-directed support have extended the options for individuals to exercise choice, through new approaches to agreeing individual outcomes and assessing and allocating individual budgets. As yet, legislation has not been specifically developed in relation to self-directed support, beyond existing legislation for direct payments. Some recent amendments to legislation have been made in England, primarily to provide for piloting of personal or individual budgets in specific sectors.
In addition there is a recognition that individuals are best placed to say what would make a difference to them and their families or carers, and a desire to move away from the strict definitions of what can and cannot be funded to achieve social care objectives. This correlates with the preventative agenda which suggests through cost/benefit analysis the cross cutting nature of desired outcomes between health, social care, education and housing, and the benefits of the economic and social benefits that can be derived from a joint outcomes based approach.
The Scottish Government has demonstrated its commitment to self-directed support with significant investment in test sites and projects. The projects address the barriers to direct payments, a number of which will remain as barriers for a broader approach to self- directed support, unless addressed in revised policy, practice and possibly legislation. The test sites are referred to throughout the strategy and the learning from them will be crucial in taking forward this major agenda for change.
There are various barriers to direct payments. These include assumptions and attitudes about the characteristics of people who may benefit from them, limitations on the use of the allocated budget, and to some extent a vested interest in the status quo. Self-directed support must be available for everyone but imposed on no-one, and existing direct payments legislation is currently being reviewed to address some of the exclusions.
1.5. Why a strategy now?
The increasing numbers of people accessing social care and support and the range of individual needs mean that services and supports will have to continue to become much more flexible and responsive in the future. This strategy responds to increasing interest in reshaping care and support in Scotland. It aims to set out and drive a cultural shift around the delivery of support that views people as equal citizens with rights and responsibilities. It recognises that for consumers and providers alike, tighter financial pressures, and demographic changes mean that improved outcomes cannot be delivered with more of the same. A 10 year vision is needed now to deliver social care that is fit for the future.
Independent Living is one of the four areas which Scottish Ministers have set as priorities for co-ordination of action across the public sector, and against which they will be required to report on progress. They have also set up a cross Governmental group, with representatives from central and local Government, health, trade unions and the . Independent Living movement. They have signed up to a vision that states:
"based on the core principles of choice, control, freedom and dignity, disabled people across Scotland will have equality of opportunity at home and work, in education and in the social and civic life of the community"
To apply these principles in practice there has to be a clear understanding of what independent living means: disabled people of all ages having the same freedom, choice, dignity and control as other citizens at home, at work, and in the community. It does not mean living by yourself or fending for yourself. It means rights to practical assistance and support to participate in society and live an ordinary life.
The principles of SDS are also strongly linked to those of recovery, rehabilitation and re-ablement. It is a shift to doing things with people who require support, patients and carers, rather than to them, within the framework of outcome planning and co-production. At the heart of this is good personalised and co-produced assessment, service design and care management and review. Shared messages within such approaches are:
- A change in culture of service provision from task and time approaches to better outcomes and on focussed goals.
- Doing with the service user/patient/carer rather than doing to or for.
- Maximising people's long term independence and quality of life.
- Appropriately minimising ongoing support - and thereby minimising the whole life cost of care.
Scottish Ministers' commitments to these principles are reflected in:
- the Reshaping care and support for older people programme
- Scotland's dementia strategy, which sets out the Scottish Government's vision and key actions to transform dementia care and treatment in Scotland. 5
- Caring Together -the carers and young carers strategy for Scotland 6
- Ensuring our children have the best start in life and are ready to succeed, and improving the life chances for children, young people and families at risk
- Equally Well
- Changing Lives
Health policy on Shifting the Balance of Care, Anticipatory Care, the Long Term Conditions Strategy, Palliative Care, and the Quality Strategy reflect similar themes of co-production, personalised service and support design, and connection to wider community planning agendas. Work on social return on investment, and the supported employment strategy give emphasis to better outcomes from goal focussed community care activity.
Self-directed support clearly has a role in meeting all of these objectives. It has a role in supporting the Government's overarching aim of growing the Scottish economy. It supports the empowerment of individuals to gain equality of opportunity and sustain their citizenship. It also contributes significantly to improving health and well-being and tackling health inequalities.
The overarching aims of all of these agendas is to increase all citizens' participation in, and choice and control over, key aspects of their lives. Some strategies and policies focus on discrete client groups, to raise the awareness and understanding of their distinct needs. These include the learning disability strategy The same as you?7 , the draft strategy 8 for people with autism spectrum conditions and other client group specific policy and guidance relating to, amongst others people with a sensory impairments and adult survivors of childhood abuse. These and others are discussed in Section 4 of the report. The consultation "Fresh, Thinking New Ideas" and the pressures and shifts in housing provision, suitability, and support are also necessary considerations in developing and safeguarding choice and independence.
The national performance framework focuses on delivering better outcomes, which is fundamental to self-directed support. In doing so, SDS also strives for best value, putting the individual at the centre; but with a transparent discussion on the use of the public purse. The strategy reflects the common goals of current health and social care policy to deliver better outcomes for individuals and communities. Evidence to the Health Committee in 2006 suggested a lack of cohesion between Government policies relating to health and social care. This strategy provides an opportunity to consider the delivery of SDS in parallel with these other commitments.
At individual level, SDS aims to acknowledge and respond to the support needs of all, regardless of characteristics, to allow equal access to outcomes. In doing so it will rely on a trained and committed workforce. SDS allows people to make purchases from outwith the traditional provider market and to spot purchase for more general goods and services. The development of SDS will therefore require a cultural shift that recognises the impact on commissioning strategies, and to some extent procurement practice. This is discussed in Section 5.
At present, SDS development in Scotland is bedded in social work and SDS through direct payments has mostly been for social support, which is to fulfil the duty of care in the Social Work (Scotland) Act 1968. Further development of self-directed support is dependent on a number of contributory factors, but there is growing evidence of the contribution SDS can make to keeping people healthier and more independent for longer. There is limited practice where it includes funding from the NHS where the outcomes include health needs. As the strategy develops, it will look to opportunities for applying the approach to other funding streams that collectively support people to live independently.
The strategy therefore addresses the role of universal services, workforce skills and competencies, protection and safety, employment law and training. It identifies national and local responsibilities for providing guidance, information, and support for those who rely on services, and those who deliver them. It also identifies and seeks to address gaps in evidence on what works.