Section Two: Instilling the values - the way forward for self-directed support
The lives of people who require support are enriched through greater independence, control, and choice that leads to improved or sustained health and well being, and the best outcomes possible.
Self-directed support should become the mainstream approach to the delivery of personal support. Building on the success of direct payments, every person eligible for statutory services should be able to make a genuinely informed choice and have a clear and transparent allocation of resources allowing them to decide how best to meet their needs. The choice should be available to all but imposed on no-one.
2.1. Shifting the balance of power
Co-production and citizen leadership
The definition of SDS relies on co-production in identifying and agreeing outcomes and support plans. There has been a gradual shift in this direction, and social care policy generally reflects the inappropriateness of seeing people as 'users' of a public service which is delivered, relegating them to a passive role which adds little social value, and provides no opportunity for equal participation in our services.
Understanding that people have skills, capabilities, knowledge and experience to contribute unleashes huge potential for co-producing better outcomes across public services.
Co-production redefines the relationship between public service professionals and their clients: from dependency to mutuality and reciprocity. Citizen leadership is also based on these values.
Risk- enablement and protection
Working to achieve outcomes that promote independent living will inevitably involve risk. Risk averse practice can lead to over protection and can unnecessarily inhibit ambitions and aspirations. Risk aversive practice can also significantly inhibit the choices and empowerment of individuals and families who are denied the opportunity for self-directed support, particularly for reasons relating to perceived legal barriers to uptake. It is important to identify and manage risk in a way that is shared among the person, family and friends, the Council and the provider(s).
The shift to co-production, outcomes monitoring and risk enablement will require training for staff across the social care and health sectors, and leadership from all levels of management. It will be all the more important that individuals and families understand risk and the responsibility for accepting levels of risk, if a culture that focuses on the failure of social work to intervene is to give way to enabling people to have control.
Enabling risk in adult social care has no simple answer. No guidance or toolkit can outweigh the skilled judgement of practitioners who understand the balance between protecting individuals who need support while applying the values and principles of SDS.
There will of course be some individuals who are subject to harm and exploitation. SDS sits within the framework of social and health care in Scotland where the principles of legislation require a proportionate response in situations where a person may require some protection from the State. Since 2000, such legislation has included Adults with Incapacity (Scotland) Act, the Mental Health (Care and Treatment) (Scotland) Act, the Adult Support and Protection (Scotland) Act, and most recently the Protecting Vulnerable Groups (Scotland) Act.
SDS does not operate outwith these statutory obligations. Along with the inspection and monitoring of the new bodies created by the Public Service Reform Act, there should be sufficient opportunity to assess whether a person's chosen SDS package is delivering agreed outcomes whilst fulfilling social work's duty of care.
One challenge to the growth of SDS is the issue of capacity to consent. Social care policy emphasises the presumption of capacity, and the processes that apply to SDS should include ways of establishing the wishes of the individual. There are various approaches to doing so, and there will be many examples where it is clear that family members know best and are clearly acting in the best interest of the individual, such as Circles of Support. The statutory limitation of direct payments for adults to those with capacity to consent is currently being considered as part of the Scottish Government's proposals for a Self-directed Support Bill. Consultation on these proposals shows that some believe current AWI processes are overly bureaucratic and burdensome. Clearly, implementation of this strategy has to comply with the law, and unless this changes, direct payments will not be available for adults who clearly require but do not have, a welfare guardian to make decisions about their care and support.
The work of Adult Protection Committees and guidance and procedures should recognise the shift to self directed support models, and the forthcoming Protection of Vulnerable Groups Act will add new measures for protection through employment practice.
Risk in SDS practice is most often raised in relation to the employment of personal assistants ( PAs). This is discussed in Section 4.
Implementation of significant reform requires strong and effective leadership within and across stakeholder organisations. A shared vision is not enough to shift from rhetoric to reality. Leadership is required at all levels, from national and local government, delivery partners and from citizen leaders. A commitment to a joint approach to delivering change and co-production is needed.
SDS should involve partnership between those who require support and those who commission and provide it. At present this can be an unequal partnership - indeed it is not perceived as a partnership at all by some citizens who have said they often feel powerless and dependent. Experience of local authorities that refused direct payments, for instance, on differing grounds across Scotland has added to this. This will only change with meaningful engagement at a policy and planning level with those organisations that are led by and represent people who use services and a cultural shift in attitude by those who provide and commission services. Investment is essential in sustaining and growing self-help and representative organisations at local and national level. It will also be needed to ensure adequate training and development of key people in commissioning and services. The emphasis on co-production is important for training too, with evidence that training delivered by people who have experience of using services is often the most effective.
One of the conclusions of a review of self-directed support 9 in Scotland was the need for effective leadership in enabling growth of flexible, personalised care. This is reinforced in the ADSW statement on personalisation, which stated the need for personalisation to be driven by Elected Members and Chief Executives.
The Social Work Inspection Agency ( SWIA) overview report on social services identified leadership as a key factor in delivering improved services and Scottish Government sees improving leadership as a key priority for 2010 and beyond. SSSC and Scottish Social Services Learning Networks are developing a national action plan from 2010 to improve leadership across the sector.
Improving leadership in social services is also a key theme of Changing Lives which has delivered a Leadership and Management Framework - a dynamic model that provides a set of diagnostic tools which allow users to reflect on, and assess, where they are as an individual, as a team, as an organisation, and/or as a social services community.
A cohort of leadership champions already exists in the form of people who have undergone the Leading To Deliver programme supported by Scottish Government. The Scottish Social Services Council ( SSSC) in its role of looking at national leadership issues and addressing priorities through a National Leadership Framework is looking to see how best this group of champions can be used to support national priorities. To support this at a local level the 4 Scottish Social Services Learning Networks, as delivery partners in the national framework are focussing on leadership communities and among other things the development of action learning sets. This broader leadership work provides a framework within which to support improvement of leadership around SDS thus avoiding the need to create and sustain new infrastructure.
Leadership is one of the themes of the Government funded local authority Test Sites and the learning from these should inform improved practice across Scotland.
More specifically, it has been suggested that leadership in promoting self-directed support could be achieved though champions who spread the vision, dedicated teams in each local authority, and a national forum to share best practice. There is a risk to identifying named leads for SDS that it will be seen as a specialist area, and the availability of experts in the filed needs to be in parallel with whole systems change that delivers outcomes focused assessment and review as the gateway to support.
The shift to SDS will need political buy in as well as partnerships at individual, local and national level. A key task for the national implementation group for this strategy will be to develop a communications strategy that engages all relevant partners in debate and discussion about the role of SDS in the development of both specialist and universal support.
The national implementation group should develop a communications strategy that addresses the overarching goal to increase knowledge about SDS. This should address the need for people who use services to understand their rights and responsibilities.
These developments require staff at all levels to be trained in the values and principles of self-directed support. This needs to include senior and middle managers, finance and commissioning staff, and of course front line staff. Individuals too and families that provide support should also be able to access training, especially in becoming commissioners of services or becoming employers. PA training is discussed in Section 4
Training also needs to go beyond social care to include staff in partner agencies who have a role in making SDS available - Health being a key one. The level of training required by different stakeholders will be varied but a key element for all will be the key principles and values of SDS - and of co-production. Training delivered by people with experience of directing their own support should build on Citizen Leadership and other models, providing peer support and case studies to illustrate what can be delivered in practice as opposed to theory.
As a central pillar for the future success of SDS, training will be a priority for implementation.
The national implementation group should develop a training strategy for SDS that sets some clear targets for the development and delivery of appropriate training to relevant groups. SSSC and NES and other national social care, social work and health training and qualification accreditation bodies should participate in this work to ensure self-directed support teaching is integrated into curriculum and assessment at the earliest opportunity.
2.3. Access to social care and support - prevention and intervention
Pressures exist on local authorities to provide Best Value while achieving improved outcomes, and financial pressures will continue to make policy shift challenging.
National Eligibility Criteria
The 1968 Social Work (Scotland) Act recognises the central role of the local authority in determining where there is a need for the provision of community care services and how such need should be met. The legislation describes assessment as a two-stage process: first the assessment of needs and then, having regard to the results of that assessment, the local authority shall decide whether the needs of that person call for the provision of services. The use of eligibility criteria applies to this second stage of the assessment process; they are used by councils to determine whether a person assessed as needing social care requires a service to be put in place in order to meet those needs.
While the advent of self-directed support requires a broad interpretation of the legislation (it is not necessarily for the local authority to provide a service in response to assessed need) it remains the case that local authorities should operate eligibility criteria to determine whether or not an individual assessed as having a social care need can access formal support.
The current position in Scotland is that a national eligibility framework exists which was developed in response to Lord Sutherland's Review of Free Personal and Nursing Care for older people. However, councils are able to apply to all adults assessed as having community care needs as councils hold that eligibility criteria have to be applied equitably across all social care groups in view of public bodies' equalities duties. The national eligibility framework employs a four criterion approach, categorising risk as being critical, substantial, moderate or low:
- Critical Risk: Indicates that there are major risks to an individual's independent living or health and well-being and likely to call for the immediate or imminent provision of social care services.
- Substantial Risk: Indicates that there are significant risks to an individual's independence or health and wellbeing and likely to call for the immediate or imminent provision of social care services.
- Moderate Risk: Indicates that there are some risks to an individual's independence or health and wellbeing. These may call for the provision of some social care services managed and prioritised on an ongoing basis or they may simply be manageable over the foreseeable future without service provision, with appropriate arrangements for review.
- Low Risk: Indicates that there may be some quality of life issues, but low risks to an individual's independence or health and wellbeing with very limited, if any, requirement for the provision of social care services. There may be some need for alternative support or advice and appropriate arrangements for review over the foreseeable future or longer term.
It remains the statutory responsibility of each local authority to assess the needs of each individual, consider whether those needs call for formal support and manage access to that support on a priority basis. While councils undoubtedly value the ability to set eligibility thresholds in line with local priorities, a key concern amongst people who use services is the fact that provision can vary in different council areas in Scotland. To that end, further work will be undertaken by the Scottish Government and COSLA to assess whether there is merit in establishing national thresholds for access to formal support across all client groups.
It is also important that councils and their partners consider whether the provision of services or other interventions might help prevent or reduce the risk of an individual's needs becoming more intensive. Indeed, councils should ensure that they have in place clear arrangements for meeting, managing or reviewing the needs of individuals who are not assessed as being at greatest risk, including:
- adopting a strong preventative approach to help avoid rising levels of need;
- embedding preventative strategies at every level of the social care system, informed by assessment of local needs and created in partnership with relevant agencies;
- timely investment in re-ablement services, therapy, intermediate care and assistive technologies to reduce the number of people requiring ongoing social care support to live independently;
- active management and review for those who are intended to but are not provided with support;
- a clear timescale for review of needs arising from the assessment;
- provision of advice on alternative sources of support and request to contact relevant referring agent if needs change.
It is recognised that the use of eligibility criteria as a means of managing demand for social care is imperfect and can result in resources being narrowly focused on individuals with acute needs. Self-directed support aims to give people control of their lives, to sustain independence and prevent escalation of need where possible. It is vital that resource allocation takes into account the important role that this level of support has in preventing crisis and a loss of independence and control. At the same time, councils need to be able to manage growing demand for social care and support, and if balanced with enhanced community capacity and appropriate early intervention options, eligibility criteria can play a role. What is important is that eligibility criteria do not impact disproportionately on any specific client group.
In 2010 the Scottish Government in conjunction with COSLA and the National SDS Implementation Group will review the application of the national eligibility framework in order to establish the need for national eligibility thresholds for all adults with social care needs.
The role of universal services
Tightening resources are a reality for all agencies and the challenge is to develop self-directed support in a way that offers people real choice whilst recognising that social work budgets may not meet all of the demands. There is growing evidence of the financial efficiencies of a focus on early intervention, prevention and (re)-ablement. Good information and advice, practical support, appropriate housing options, and joint working between health and social care can assist people in living fulfilled and independent lives, thereby reducing the number of people entering or requiring ongoing support from social and/or health care.
Some evidence of the developing use of individual budgets in self-directed support suggests that the dialogue with individuals and families can lead to more effective support that will meet people's outcomes at lower costs. IBSEN10 found little difference between the average cost of an individual budget and the costs of conventional social care support. Clearly, the main aim of self-directed support is not to cut costs, but the extent of its success will be limited by financial constraints, and social care budgets cannot meet all of the demands. It is therefore crucial that resources from all responsible sectors are combined effectively. Local authorities need to work in partnership with the NHS to share investments that improve outcomes for individuals. Work on the Integrated Resource Framework may assist in addressing the interface between health and social care costs, strategic planning and service redesign. This work is underway with four partnerships (four health boards and their 12 local authority partners) established as test sites in September 2009. The objective of the IRF, which is being developed in partnership between the Scottish Government, COSLA and NHS Scotland, is to enable resources to move across the system to best meet the needs of citizens.
The responsibilities and targeting of other service agencies should recognise the principles of person centred approaches, and co-production. Citizens should be supported to sustain or regain their independence, and have the right to support that at least maintains and, where possible, improves their health and well being and promotes independent living.
More economic analysis is needed, to assess the extent of investment needed - from social work and community planning partners -to achieve the right balance between lower level and critical and substantial supports. As discussed above, many authorities have introduced eligibility criteria in an effort to manage budgets, to bring some transparency and clarity to their services and to address the feeling that there is an inherent lack of fairness. A cost benefit analysis is needed to identify the financial and other benefits of the focus on prevention, reablement and self-care across all sectors and workstreams.
Beginning in 2010, the Scottish Government should work with COSLA to apply economic analysis to developing strategies for councils to lead the shift towards self-directed support. The focus should be on a shift to commissioning for individuals rather than for groups, and in investing in prevention.
The direct purchase of services by individuals is mostly through social care at present, and the longer term aims of the strategy will be to extend this to other sectors. But some services and supports need to be available throughout communities, to enable active engagement, empower citizens and promote inclusion. Information and advice on mainstream and specialist services should enable citizens to access wider supports more easily.
This responsibility does not rest solely with social care. Social care is one of a range of resources that can play a part in bringing that about. For independent living to be a reality, people need to have access to housing, transport, new technology, and telehealth care, education, jobs and leisure and recreation in the community. It needs the combined efforts of people themselves, their personal networks, their communities, universal services and other sector providers. Education, transport, Department for Work and Pensions ( DWP) and employment agencies are the primary resources with which social care and health need to engage.
Guidance for Community Planning following the Local Government (Scotland) Act 2003 states: 'Building social capital - the motivation, networks, knowledge, confidence and skills - within communities should be an integral part of achieving more effective community engagement. Local authorities, in conjunction with their other Community Planning partners, should provide support to community and voluntary bodies to facilitate community engagement in the Community Planning process to those communities most in need.'
Community planning has three main aims:
- Making sure people and communities are genuinely engaged in the decisions made on public services which affect them; allied to
- a commitment from organisations to work together, not apart, in providing better public services, and
- providing a vehicle for the development, by stakeholders, of Single Outcome Agreements that capture the priority policy aims of local communities to be delivered by stakeholders.
Community planning partnerships therefore have a clear strategic role in delivering the level of change required to support the growth of self-directed support. Communities can develop the use of social capital, including through disabled people's organisations, so that people can meet their needs with the most appropriate recourse to statutory services. They should provide a coordinating role in relation to key activities on the environment, public safety and security, access issues, and community services and activity. For example, Passenger Transport Authorities and their local authority partners, the Scottish Ambulance service and private and community transport operators could examine how better to reach people with mobility issues.
There is a need to raise the profile of co-production in public services with community planning partners, both nationally and locally, and COSLA, ADSW and National Government should make use all opportunities to do so. Community planning groups should also seek appropriate representation from individuals and representative groups to reflect the diversity in the community. The engagement should also focus on capturing the evidence of improved outcomes, to inform Single Outcome agreements and other targets specific to some CPP partners.
The Scottish Government should encourage community planning leads to support social work and other local authority departments and agencies to work together and combine their funding to achieve better outcomes for people who have personal and social support needs. This should be reflected in Commissioning and strategic planning frameworks where the place of SDS is clearly modelled and planned for.
The development of local area co-ordination ( LAC) is growing in Scotland, with evidence 11 of the positive outcomes it delivers for individuals and families. Currently local area co-ordination is funded principally by social work budgets, mostly learning disability budgets. Local authorities and Community Planning partners should consider the broader contribution local area co-ordination can make to communities, and consider combined resources to extend availability to all client groups. The LAC National Development Team should share their practice framework with Community Planning partners.
Community planning partners should be provided with information on the potential of local area co-ordination, with a view to considering pooled resources to support the development of this approach for all client groups.
2.5 Health and wellbeing
Jasmine lives with her parents and 2 teenage siblings. She is 3 years old and was born with auto immune deficiency requiring hospital treatment over a long period. She has had bone marrow treatment, the second time more successful, and has been able to return home. She requires a very high level of care and supervision.
Due to the immune deficiency and need to protect her from infection while her system builds in strength she is unable to attend nursery or any respite resource. Her parents are in need of regular breaks from caring and to have time to spend with the older children. An agreement has been reached between social work and the NHS for health to fund 6 hours per week, which the family take as a direct payment to employ a nurse who can come into the family home and offer a break in a very flexible way.
Health services need to be an integral part of the overall effort to increase self-directed support, through single shared assessment practice, anticipatory care, and robust discharge planning. In particular, health improvement and complex care provision need to come together and build on preventative, enablement/reablement and rehabilitation approaches.
A few existing direct payment packages, managed by the council, are funded entirely by health monies, but it has been suggested that health partners' understanding of and engagement with the development of self-directed support needs to be developed. The Government has provided funding to NHS Lothian to build on the existing, limited practice of health monies contributing to self-directed support packages.
NHS Lothian pilot
The first phase of NHS Lothian pilot is focusing on;
- individuals living with complex care needs, in particular focussing on increasing the uptake of jointly funded SDS packages;
- those living with one of three long term neurological conditions namely MS, First Stroke & ABI, with a focus on supporting individuals in the self - management / self -maintenance of their health.
The purpose of the pilot in the first phase is to;
- capture baseline knowledge of the SDS approach with both individuals and staff
- capture the numbers and data of people opting for SDS
- capture the individual experience of opting for SDS
- capture carers perceptions of the benefits to the cared for individual of opting for SDS.
capture staffs' perceptions of the benefits to engaging with individuals through SDS, and the benefits for the individual of opting for SDS.
One of the short term goals of this strategy is to increase the contribution of health monies to SDS packages, and the lessons from this project will be an important factor in achieving that commitment.
The Scottish Government should disseminate the findings from its health-related pilot in Lothian to all NHS Boards so that this learning can be put into place across all of Scotland by 2012. In the interests of shared awareness, the findings should also be sent to local authorities and providers.
2.6 Housing Support
Housing support services help promote independence and choice for the individual, with an ethos of working with those individuals to help them achieve their own goals or aspirations, and regain or maintain their independence, as far as is practical, in a stable supportive environment. Services can be provided in the individual's own home or linked to specialist supported accommodation, for example for older people or homeless people.
The removal of ring fencing around "Supporting People" funding was designed to make it easier for local authorities to develop more flexible support packages, tailored to the personal circumstances of individuals, and reduce accounting burdens on local authorities and service providers.
Housing support services provide a range of assistance, including help to maximise income and manage a household budget, maintain a tenancy, keep safe and secure, assistance with shopping, laundry and other daily living tasks or getting help from specialist addiction services. Levels of support can vary; from low level preventative services to more intense daily assistance, and can be on a short or long term basis. Support is tailored to suit the specific needs of the individual, but focussed on helping them maximise their independence. These services are regulated by the Care Commission and routinely use support planning as a method for engaging individuals and agreeing outcomes to focus on.
Personalisation and choice are core values within housing support, and providers are encouraged to work with clients to help them set their own objectives and measure progress towards these objectives, for example through the use of the "Better Futures" outcomes tool. This tool can be used by providers to help individuals define their own short and long term goals and measure progress towards them.
At present, some people have direct payments that include funding for housing support, allowing them to take a holistic approach to arranging their personal and housing support. Implementation of this strategy should therefore consider how the broader options for SDS will allow a co-ordinated approach to delivering personal and housing support, building on direct payments experience and allowing those who do not wish to manage the resources to have the same level of choice and control. In relation to housing support we encourage shared assessment processes alongside consideration of social care and other needs, but it can be carried out separately.
2.7 Employment and education
Recent policy work has recognised the central importance of employment to well being, and Equally Well 12 highlighted a need to strengthen education and skills, income and employment status as factors which can combat inequalities in health.
Just under half (48.1 per cent) of disabled people in Scotland are in work, compared to around 75 per cent of the general population. There is considerable variation in the employment rates for different health problems or disabilities, with less than one in five people with severe learning difficulties in paid work.
The Scottish Government in conjunction with Cosla produced a Supported Employment Framework for Scotland that aims to:
- Raise awareness about the contribution supported employment can make to economic growth, to employment, to social inclusion and to the health and wellbeing of disabled people.
- Ensure that supported employment is seen by local authorities and their partners as a valued and integral part of local mainstream employment services.
- Help agencies work together to make sure that individuals are not caught in a 'training cycle' but make the transition from training to paid employment.
To support some of this activity, the Government created an Employability Learning Network 13. The network is aimed at partners in local employability networks, including local authorities, NHS Boards, CHPs, and Third Sector organisations. The employability learning network's website has toolkits, learning points and other employability resources.
Stimulating young people to remain in education, employment or training post-school is the best way of ensuring their long-term employability and contribution to society. Partnership between national and local government, colleges, universities, the voluntary and private sectors, is essential to achieve this. Partnership Matters 14 sets out the key partnership roles in providing support for students with additional support needs, whether it is to a university student needing support to stay within halls of residence or for a further education student with complex needs wishing to improve their independent living skills.
Case study 15
Laura is a young woman in her early 20s who was diagnosed when she was 18 as having Asperger's syndrome. She had now been receiving a direct payment for 3 years and she uses it to employ a PA for an average of 20-25 hours a week. However this average conceals a wide range since Laura can use the time for brief catch up meetings after classes and for longer periods of support at weekends and during holidays, where there would otherwise be les structure to her life. Like all younger women of he age Laura wants to be independent and she is hoping that the university degree which SDS has supported her to achieve, together with continuing access to SDS, will help her to do this. She is now beginning to look beyond university and is currently trying to identify the sort of work she would like to do after she graduates.
Self-directed support should enable more people to tailor their support to access education, training and work. The Implementation Action plan should specifically address opportunities for SDS and employability activity to bring this about.
2.8 Services for children: Getting it Right for Every Child ( GIRFEC)
SDS is relevant to all ages. Whilst much of the focus of the strategy has been on support for adults, implementation activity will need to build on the limited progress to date in providing direct payments for children and families.
Getting it right for every child is a national programme that aims to improve outcomes for all children and young people in Scotland. It seeks to do this by providing a framework for all services and agencies working with children and families to deliver a coordinated approach which is appropriate, proportionate and timely.
The fundamental idea behind Getting it right is that an integrated and seamless network of support, coordinated at the point of delivery, should be built around the child or young person's needs rather than that the child and family should have to adapt to the requirements of the system. Evidence from the pathfinder to date suggests that many service users are getting a more appropriate, timely and proportionate service.
Social work services have reported a marked reduction in referrals to them from universal services for general support for individual children and families, which would indicate a gradual shift to more children with needs being held within universal services. This has also been noted by the universal services.
It is apparent that a significant shift towards the single planning process has taken place. There is also emerging evidence that resources are being used in a more planned and targeted way. However, this depends on three key factors:
- that the Child's Plan is a genuinely multi-agency one and not a social work plan or health care plan with bolt-on extras;
- that, in the most complex cases, the Lead Professional has the support and guidance of senior managers across the agencies;
- that the plan is outcome-led rather than output-led.
An analysis of potential savings arising from the implementation of the new Getting it right processes in the Highland pathfinder area is still being carried out in order to explore to what extent either net savings are being achieved through more streamlined pathways and planning processes or whether costs are being redistributed across services.
There are many parallels between GIRFEC and SDS. Direct payments are already available for children's services provided under the section 22 (1) of the Children (Scotland) Act 1995. In 2009, 471 direct payments were made for people under 18 years of age.
Implementation of this strategy should therefore include specific activity to consider how both agendas can be integrated, with a specific focus on the opportunities to improve the transition to adult services for young people.