Choice and Control
The Context
Our first IMPACT Network ran as a pilot in 2022 and explored choice and control (often referred to as ‘personalisation’) for adults with mental health conditions and/or learning disabilities.
Ways of offering choice and control in adult social care are sometimes seen as ‘all or nothing’: people either receive support via direct payments and have choice, or access services provided by their local authority and therefore have less control.
In Wales, Scotland, England, and Northern Ireland, there are various approaches to providing the ‘middle ground’ between directly provided or commissioned services and direct payments. The language used varies but they are essentially options that aim to provide choice and control for people who may not want to or be able to manage a direct payment, and who have a trusted service provider who they want to work with.
For this Network, there was a particular focus on:
- Exploring the barriers, opportunities, and evidence needed to enable greater progress on choice and control locally.
- Sharing practical solutions at the community level to facilitate greater levels of choice and control experienced by people who draw on care and support.
- Identifying scalable solutions to challenges around choice and control which can inspire and inform change.
Our Networks
There were four Local Networks – two in England (Independent Lives in West Sussex and Devon County Council), and one each in Scotland (In Control Scotland and Radical Visions) and Wales (Cwmpas). Each Local Network included people with lived experience, carers, commissioners of services, providers, and support services, brought together by a Network Coordinator.
In Northern Ireland, we adopted a different approach – a ‘Community of Common Interest’ – coordinated by ARC NI and which brought together people with lived experience, carers, commissioners of services, providers, and support services from across the country to explore ‘managed budgets’ and the barriers to their use in practice. This group met to explore learning from the other three nations and work together to get managed budgets back on the agenda and into practice.
Northern Ireland
In Northern Ireland, the introduction of self-directed support in 2014 included the option of receiving a direct payment as a ‘managed budget’, with the Trust, broker, care provider, or another organisation holding the budget for a person who would ultimately be in control of how it is spent.
Wales
In Wales, Direct Payments can be used to enhance voice and control, such that the Social Services and Well-being Act 2014 has an explicit commitment to ‘giving people a strong voice and real control over the decisions that affect them’. In addition, Section 16 of the Act places a duty on Local Authorities to promote cooperative, mutual, user-led services and this can include the potential to pool their Direct Payments to organise joint activities.
Scotland
In Scotland, ISFs are one of the ways of managing an individual budget available under ‘Option 2’ of the Social Care (Self-Directed Support) Act 2013 – funding is allocated to a provider of choice or another third party. Though explicitly referenced in policy in the past 10 years, ISFs have been used for over 25 years in areas of Scotland.
England
In England, ISFs have been argued as a way to move away from traditional hierarchical systems. They have been used for more than 20 years but were formally included in policy in the 2014 Care Act.
Choice and Control Evidence Review
Before the first Network meeting, IMPACT carried out an evidence review and found:
- all four nations of the UK are trying to make sure that people who draw on care and support can have greater choice and control over the support they receive
- providing choice and control can promote independence, wellbeing and a sense of empowerment as well as enable people to creatively personalise care and support to their own needs and preferences in ways that are flexible and responsive
- however, offering choice and control is sometimes seen as an ‘all or nothing’ approach and there is an impression that people either want to do everything on their own or want access to group services when in practice we all want to do somethings by ourselves and somethings with others
Benefits of this model
- the ‘middle way’ between direct payments and commissioned services can promote choice and control for the person
- increased self-confidence, improved health and wellbeing, reduced professional support, improved relationships, increased autonomy and greater self-advocacy
- offer a flexible, responsive approach that allows for creativity
- provide clarity and accountability, where everyone knows what their rights, responsibilities and roles are
- ‘keep it local’ by ensuring councils’ funding is spent locally when used alongside micro enterprises
Tips for implementation
- consider piloting the new approach to build experience and knowledge
- place the person at the centre of decision-making, and focus on outcomes
- communication is key and regular meetings between to share and explore problems and practice are important
- create training opportunities to ensure everyone is ‘on the same page’
- co-create accessible information with and for people who use services and their carers about the model you’re using
- factor in the administrative costs
- monitor and evaluate progress but with realistic expectations – change takes time.
Choice and Control Network Local Meetings
First meeting discussions
At the first Local Network meeting, Local Network Members discussed the evidence review and their experiences of choice and control.
People receiving support said they often had to ‘fight’ for the right services and their independence, and that this was frustrating. Some had experience of living in residential care and felt they had more choice and control over their lives when they moved into their own or supported accommodation. Those who did receive direct payments said they felt there was a lot of responsibility that went with becoming an employer, and where there isn’t anyone to help with this, support can go back to being provided through commissioned services.
Carers also felt that managing things like direct payments and personal health budgets on behalf of someone else could be difficult if the funding was prescriptive. Finding personal assistants or support workers they could trust could be a challenge due to recruitment and retention issues in the care sector.
People working in front-line services felt at times frustrated by a lack of progress when projects that aimed to give people more choice and control were paused or cancelled. When they had to advise and support people on direct payments and personal budgets, they sometimes found the rules and options available were too narrow and prescriptive to offer real choice.
Discussion Summary
Positive improvements to choice and control
The main things people said helped enhance choice and control, included:
- Being asked – true choice and control means asking, not assuming one answer stands forever, and considering communication needs.
- Being supported to make decisions – decision-making can happen at lots of different levels, and people should be supported to make decisions at every level possible.
- Good information – being able to access up-to-date, accessible information on providers, activities, or groups. “We need to get information about what is out there to people. How do you learn about these things as they are not common knowledge?”
- Good relationships – there are power dynamics in relationships; one person could be seen as being quite influential and pushing a decision in a particular way. Facilitating open conversations is important, potentially using advocacy.
- Transparent systems and clarity over budgets – clear understanding of the eligibility criteria for different monies, knowing what they could be spent on; clear and easy to understand budgets; visual tools to help with setting outcomes and timescales (e.g. PATH [Person Centred Planning in Action], 24/7 grid)
Issues that prevent choice and control
Issues that prevented people having choice and control included:
- Risk – people should be supported to take risks and try new things, but attitudes can be a hindrance. Proactive risk management with the supported person, mitigating risks together can be positive.
- Finding a balance – professionals and carers knowing when to step in and intervene or step back and allow space for risk, mistakes and learning.
- Relationships – sometimes the “family knows best” perspective can be a hindrance to the individual making progress. Also relationships between different partners- care providers feeling like they are consulted to a lesser degree than a social worker, for example. Rigid systems and processes – “assessments are only as good as the person writing it”. Support plans can be unnecessarily prescriptive and prohibit flexibility.
- Time – time to review support plans not seen as a priority, and choices should be revisited, not taken as permanent. “The importance of enabling the person receiving care to be flexible, change their mind and be the main ‘voice’ in their own care and decisions as a priority”.
- Location and availability of services – very rural locations mean choices can be limited.
- Disconnect between social care and health – health paying directly for some services rather than putting it into the budget so the individual can choose.
- Covid-19 – many projects and activities were paused during the COVID-19 pandemic
Choice and Control: an example
Each Local Network drew on their own personal experience and practice knowledge to explore the changes they could make, and also shared them with the other Local Networks via their Local Network Coordinators and at a showcase event. One example shared was an adult social care cooperative, established in Wales.
Wales – an independent co-operative
In Wales, a group of adults with learning disabilities were told their support service was going to be re-tendered by the local authority. They were told they would be able to choose who provided their support, but as things progressed, they were told this might not be the case. This was upsetting as the group was familiar with their provider and had built trusting relationships with their support workers which they didn’t want to lose.
After discussions with the Local Authority, the group was told they would have to accept care from a new organisation or receive individual direct payments. They felt upset, worried, and that they needed to “fight” to take control of their care. The group received support from Cwmpas (the Wales Co-operative Centre) and the Local Authority, and decided that they wanted to explore receiving direct payments which they could pool together and manage as a group by forming an independent co-operative. Cwmpas provided guidance on the practical steps involved in setting up a co-operative, and information on the responsibilities of key roles such as Chair, Treasurer, and Director.
Overcoming challenges
There were a number of challenges faced by the group. Firstly, as the pooling of direct payments was a new way to receive support, it took some time for the LA to set up systems and the group had to communicate with a range of departments.
Financially, there were challenges including opening a bank account, keeping records of passwords, and managing correspondence. Banks weren’t familiar with the idea of co-operative, and sometimes the group needed help with letters that felt intimidating. However, members explained how being part of the co-operative had given them more control over their care.
For example, one person loves gardening and has an allotment, and he can now use his care hours to pay for a support worker to help him do this. Overall, the group found the process worthwhile and would really recommend other groups to “go for it” and set up their own co-operative.
Reflections
The Local Network in Wales brought together members of the Friends United Together Cooperative, the local authority, the support provider and Cwmpas, the Welsh Cooperative Centre. Working together to explore the benefits and challenges of the cooperative model gave ‘space and time’ to reflect on how far they had come and where they wanted to go next together.
The Local Network Coordinator reflected: “The group told me that it had been interesting to share their experiences with me as it helped them to reflect back on what they had achieved and how far they had come. They had “taken it for granted” in some ways, rather than seeing it, as I did, as something pioneering and impressive”. In later meetings, they brought in other members of staff from the local authority in the Direct Payments team who reflected that the meeting was “invaluable” and that hearing and seeing the impact of Friends United Together would lead to further change.
Members of the IMPACT Networks Team and IMPACT’s National Lead for Wales also linked members of staff from the local authority who had supported the establishment of the co-op with commissioners from other areas of the UK to hear about their approach. The showcase also was attended by stakeholders from across the UK, including from the Northern Ireland Community of Common Interest who were inspired by the story of Friends United Together and the other experiences and practices shared.
Action Plans and Theory of Change
The later Network meetings focused on mapping processes related to choice and control to support the identification of potential areas of change. The final meeting was used to co-produce an ‘action plan’ using a Theory of Change approach, that drew on what they had learned from the evidence, other Networks, and each other – to enhance choice and control in their local area. A Theory of Change is ‘the description of a sequence of events that is expected to lead to a desired outcome’.
After the Network had ended, members held a showcase event to present their action plans to each other and a broader audience. Evaluations are done six and twelve months after the Network concludes to find out more about the impact of taking part in a Network and to support the Networks to monitor the progress of their action plans.
Feedback on IMPACT Networks
Network Coordinator
WalesNetwork Coordinator
West SussexNetwork Participant
Devon