The second meeting of SPIRIT took place on Thursday 3 December. We all meet at People First Dorset in lovely Herringston Barn in Winterborne Herringston, Dorchester.
We start by talking about the beautiful journey by train and the local countryside over a cup of tea and cake.
In the previous meeting we identified a list of key issues which shape the lives of people with learning disabilities. We decided to prioritise these and at each meeting, we would identify what research has been done on this topic and what are the gaps. The first of these that we researched was on personal budgets and direct payments. The summary of what we found is below:
Part 1 of meeting: Research on Personal budgets and direct payments
Mel begins by giving a summary of the main findings in the research. These findings emerged from a word search for ‘learning disability’ and ‘personal budgets’ and/or ‘personal assistants’. 1,531 sources were found; only 104 in UK:
- Managing personal budgets could be challenging; need skills to manage money, deal with the advertising, recruitment and employment of a personal assistant, including dealing with contracts, employment law
- Often family member takes this on, but best support may come from ‘direct payment support officers’ or other support services such as People First and Centres for Independent Living, as they work to keep the person with learning disabilities in charge. Power may be delicately balanced.
- Often personal assistant was not a stranger, partly because of concerns about safeguarding, but employing family members as personal assistants is problematic
- Relationship needs to be friendly but professional
- One paper found a preference for employing different people to do different tasks
- Direct payments enable choice if there is support to use them
- Parents can be parents rather than carers if a personal assistant takes over care
- Direct payments affect the ways social workers do their jobs, they need training to support people with learning disabilities to use them
- 5 key things to a successful working relationship: showing respect; supporting choices; giving advice; friendliness; and, providing support to ‘speak up’.
- Personal assistants need to develop skills and strategies to achieve an ‘ordinary, friendly relationship’ but within a professional context
- Personal assistants’ work is poorly regulated; they commonly have ‘low levels of pay and poor working conditions of employment’
- Employing PA toolkit skillsforcare.org.uk/employing-your-own-care-and-support
Next, Andrew shares similar findings from the IBSEN evaluation (2008) and recent POET survey (2014):
IBSEN (Individual Budgets Evaluation Network):
- People with physical and sensory impairments have consistently higher rates of take-up while older people, people with learning disabilities remain much lower
- In a few sites, implementation for people with learning disabilities had been more difficult than expected because it had required developing accessible information and assessment documentation; developing support plans with this group had also been more difficult and protracted than anticipated.
- Budgets for people with learning disabilities were highest and appeared to provide most scope for a wide range of uses. However in line with the size of the overall budget, expenditure on mainstream services was significantly higher for people with a learning disability compared with other groups
- People with a learning disability spent significantly more on leisure activities (mean £3,360; p< 0.05) compared with other client groups
- For people with learning disabilities, there is a cost-effectiveness advantage in terms of social care outcomes but only really when we exclude people without support plans in place from the analysis.
- People with learning disabilities and their carers were thought to find individual budgets processes stressful and this stress may have been exacerbated by the length of time it took to put one in place.
In Control POET Survey (October 2014: 4000 respondents with PBs).
- People with learning disabilities were less likely to report a positive impact of their budget on their opportunities for paid work, feeling safe, being as independent as they wanted to be and being supported with dignity.
- They were, however, more likely to report a positive impact of their budget on their self-esteem.
- People with learning disabilities and people with mental health difficulties were more likely to report that the council made things difficult.
- People with learning disabilities were less likely than other groups to have a direct payment made straight to them and more likely than other groups to have a direct payment paid to a family member or friend.
- People with learning disabilities were less likely than other groups to do their planning themselves without help.
Finally, other members of SPIRIT platform provide accounts of ‘on the ground’ experiences of personal budgets:
- Communication is poor from councils. The lack of information means that people don’t know what they are eligible for or how it works.
- Reviews happen very rarely. Social workers are only available if an emergency crisis.
- Every council is different – huge fragmentation, each area re-inventing the wheel in different ways.
- Day services’ staff don’t like PA’s to come along to their centres, as often they are not a flexible service.
- No Local Area Coordination or no In Control in Southampton or Dorset. This makes it very difficult for people with learning disablity, as process is not clearly mapped out.
- Degree of success completely depends on Individual Care Assessment manager. There is huge inconsistency with commissioners keep changing their local processes.
We all agree: Research has identified lots of problems and what is needed is ideas for solutions!
Part 2 of meeting: Seminar Launch Event
The focus of the second half of the meeting is our launch event which we agree needs to be focused on how research can be turned into action.
We discuss what is a seminar. We talk about how it can be organised more like a workshop with some presentations that are accessible. There can also be opportunities for lively small group discussions.
We share ideas of potential people that could participate. We agree that we should provide online podcasts of the speakers for wider circulation.
We suggest that some time in May 2016 could be a suitable time to host this event.
Clare suggests that an opening question for the seminar should be: What is research? We could ask people to find out about personal interests from person sitting beside them as an example of ‘doing research’.
I agree to circulate an online survey to record each member’s views about what we would like to focus on for the event (our ‘key message’) and ideas for potential speakers.
Talk to Inclusive research in Norway project about finding a date in May for launch seminar event.
Research theme for next meeting: housing (look at what research/info is available)
Find two new people for group from Hampshire and Bournemouth (People First Dorset and Choices Advocacy) possibly with – complex needs/from a different cultural background.
Date for next meeting: 25 February (Choices Advocacy, Southampton)