Community Glue’s Experience.
What We Liked About ‘Personalisation
Jon and I started Community Glue because we wanted to support initiatives that gave people more say in their social and health care. In previous jobs, we had been frustrated by an approach to commissioning services that often paid tokenistic attention to the views of service users, and led to inflexible support, low staff morale, and a risk-averse culture.
In 2008 Oxfordshire County Council had introduced ‘self-directed support’ under the ambitious banner of ‘Transforming Adult Social Care’. The vision was that, with the help of a support broker, people could design their own support packages, and that this would in turn lead to them shaping services in ways which would meet their needs more effectively.
Having control of their own social care budget seemed to offer people genuine power over how their care was provided. We were optimistic about how this might improve people’s experience of social care.
More Peer Brokers!
In the brokerage process, the support broker seemed to be key, and we were particularly interested in the idea of ‘peer brokers’ – people who had themselves experience of services.
We wanted to increase the number of peer brokers locally, so we designed and ran a 10 session course that would equip people with the skills and knowledge to work as peer brokers. The course was backed up with mentoring support and opportunities for linking in with like-minded individuals and organisations.
We hoped this would lead to more people working as support brokers, which would create a bigger pool of brokers for people to choose from.
The Peer Broker Course
The Peer Broker Course ran three times between September 2011 and April 2013, training a total of fourteen people as Support Brokers. We used a ‘peer learning’ method, with everyone’s personal experiences being valued equally, to mirror the sort of approach we favoured in support brokerage.
Participants found the courses useful and interesting. They valued the emphasis on people using their own experience to help the learning process, and generally felt they were better equipped to help themselves and others navigate the process of setting up social care.
Problems with Personalisation
Whilst the courses were running, Jon and I both did some work as support brokers. Our experience was not particularly positive. As time went on, a number of concerns arose about whether self-directed support was really delivering locally, and about job prospects for course participants.
Lack of Knowledge about Self Directed Support
We often encountered a general lack of knowledge among professionals, service users and carers about personalisation and the role of support broker.
Self directed support began life at a time when social care funding was in perhaps its healthiest state ever, but then the economic crash in late 2008 happened, and social care budgets have been slashed ever since. Partly as a result of the cuts, self-directed support failed to inspire many professionals. We heard of cuts to individuals’ budgets resulting in the barest minimum of support provision; tighter limits on eligibility; and a lack of time for social workers, brokers, personal assistants and other professionals to work with people, leading to unmet expectations, and low morale.
Transparency about Money
How local authorities work out the individual budget to meet people’s social care needs is often shrouded in mystery. Most professionals view the process with distrust.
Admin heavy assessments, complicated forms, and cumbersome, unresponsive mechanisms for organising care are commonly experienced obstacles. Course participants were often confused about the financial side of self directed support. Which, frankly, is probably not unrelated to the fact that it is confusing!
Lack of Choice
People often have very limited choice about who offers them support. In the case of personal assistants, particularly outside the city, there may be only one, or sometimes none to choose from, rather than the burgeoning market of supports and services that was imagined.
Lack of Work Opportunities for Peer Brokers
Only people identified as having ‘critical or substantial’ social and health care needs can access professional support brokerage. This has reduced the number of support brokerage work opportunities.
Community Glue’s Attitude, and Ideas from Participants
Our initial optimism about self directed support has been tempered by our experience over the last 3 years. Implementation of sds has been patchy at best, though by early 2012, there was still a degree of optimism locally for what personalisation could offer.
We were realistic about the limitations of self directed support, particularly in the wider context of changes to the welfare system. At the end of the first run of the course, we asked our group if they thought self-directed support had been discredited, and whether we should walk away from it. People unanimously thought it was important for us to stay involved.
We also stressed the immense value of supports that could be provided by ‘user-led’ groups and organisations. We asked how we could best support the development of local initiatives. The group came up with a range of useful suggestions, including:
- Providing basic skills training and support to local groups.
- Use a wide range of supports as examples for exercises on support planning.
- Sharing information on our web site
- Developing a similar course for people who want to develop user-led supports
- Updating people about changes to the way individual budgets are administered locally, and on policy developments.
- Hearing from people with experience of setting up/using support plans.
- Exchanging information about local supports.
- Letting people know if there are any developments with mental health budgets
- One course participant suggested that we should set up some sort of support of activists/self-advocates who want to challenge their individual budgets.
By the final run of the course, we were encountering more scepticism about the idea that support brokerage would provide better support outcomes for clients. This was not surprising, given that many people with social care needs were experiencing a general reduction in the level and range of support they were able to access, limiting their choice and control over the supports they receive.
Changes to the way that brokerage is working locally frustrated participants’ ambitions to gain paid employment at the end of the course, though many found that learning from the course was useful to them personally, or to the people they cared for. This led us to investigate opportunities for volunteer broker support, or using what people had learned more informally (for example to help a relative or friend).
Areas for Development
We haven’t given up on personalisation, but we have become much more doubtful about whether how it is delivered locally necessarily leads to a more person-centred approach, and better packages of support for people. Along with others, we’ve come up with a few ideas on how to improve things locally.
Increasing Knowledge and Support in Personalisation
We discovered that more general information about personalisation was required. We identified a particular lack of knowledge among people assessed as having learning disabilities. During the project we established links with ‘My Life My Choice’, a self-advocacy organisation for people with learning disabilities, and we would like to work with them to provide information sessions for their members.
Collaboration with grass-roots groups and organisations
The positive efforts of groups such as The Oxfordshire Wheel, Oxfordshire Family Support Network, Re-Energise, and Age UK inspired us to hold on to the idea that grass-roots organisations often have a better grasp of what is going on for individuals in the system, and are better place to come up with solutions. We worked with Age UK Oxfordshire to look at ways of them offering volunteer placements to support brokers.
Working outside the constraints of ‘eligibility criteria’
With the decreasing number of opportunities for people to work professionally as brokers, and for people with lower levels of need to access support brokerage, we became interested in the idea of people being able to offer unsalaried peer support brokerage in a form that values their work in other ways.
While we were acutely aware of not getting the legal obligations ‘off the hook’, we want to maximise people’s options for support. We responded to this challenge by thinking about non-mainstream approaches: in particular, timebanking.
Timebanking is a means of exchange used to organise people and organisations around a purpose, where time is the principal currency. For every hour participants ‘deposit’ in a timebank, perhaps by giving practical help and support to others, they are able to ‘withdraw’ equivalent support in time when they themselves are in need. In each case the participant decides what they can offer.
We were attracted to the idea of people offering support brokerage to others through the timebank, particularly to those whose needs were assessed as ‘ineligible’ by statutory services, and to be able to then bank their time so that they could access support for themselves in the future. Oxford Timebanks helped us develop ideas, and we continue to work with them to make this a real possibility for the people we have worked with on the course.