SPIRIT on tour in Norway

 

– Andrew Power

On November 1st, Melanie and I travelled to Molde University College, Norway, a beautiful campus looking out over the fjord and snow-peaked mountains. We were invited to help plan and launch a new Nordic Inclusive Research Network.

May Ostby, who works at Molde first made contact with us in the early days of SPIRIT. She, and Norwegian colleague, Anita Gjermestad (pictured above), had seen Melanie speak at a Nordic Network of Disability Research conference. When she heard of SPIRIT, she was keen to reach out and learn from the work we were doing – and to find out more about inclusive research in the UK.

May, Anita, other colleagues and a group of self-advocates with learning disabilities who had done fantastic research on self-determination attended our launch seminar in June. May and Anita were keen to establish a network for academics across Norway who wanted to do research more inclusively with people with learning disabilities. Melanie and I helped shape the funding proposal that was submitted to the Norwegian research council, in order to build a resource base to facilitate more opportunities for members to collaborate.

The aim of our trip to Norway was two-fold. Firstly, we were invited to explore possibilities for further collaboration between SPIRIT and the network and to shape the objectives and suggested activities of the network. Secondly, we were asked to share the lessons of doing research inclusively in the UK and the opportunities that SPIRIT opened up at their launch seminar. Over 30 people attended this event, including academics from universities across Norway.

Melanie spoke about the lessons she had learned from her ESRC-funded research on what quality means in inclusive research. She argued that inclusive research is difficult, but it was important to ‘feel your way’. She made an important distinction between using the term ‘inclusive research’ which can imply a particular gold-standard model, and ‘doing research inclusively’, which allows for multiple ways of doing research together with people with learning disabilities. The latter involves an open mind about trying new things.

I spoke of the lessons from two research projects which had in different ways involved people with learning disabilities participating in research design, data collection, analysis and dissemination. Through these examples, I discussed the issues associated with different priorities, timescales, politics, and pressures that academics have to contend with compared to people with learning disabilities. In many cases, people with learning disabilities have very different pressures, sometimes quite immediate, and their timescales for wanting change are very short.

Having a platform like SPIRIT has enabled Melanie and I to have a space to talk about these four different pressures with the self-advocates and disabled peoples’ organisations – and to find ways to overcome some of the differences in them.

One overarching challenge we both spoke about was the power differences that remained despite doing research more inclusively. With differential access to power, barriers continued to persist including unequal access to resources and unequal opportunities to contribute in different stages of research. Melanie and I discussed the work we had undertaken in designing a timebank to help break down these barriers. This generated a lot of interest by the Norwegian academics, who felt that they could use a timebank system to share their time and to involve more people with learning disabilities. They were excited about the idea that an online timebank could reach out to an international audience, and involve sharing of time with people in different countries.

Overall the SPIRIT tour was a successful visit, with new avenues for collaboration opened up, more opportunities to share in knowledge and experiences, and a renewed appreciation for doing research inclusively.

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Our second meeting

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.

Next steps

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)

 

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Our First Meeting

– Andrew Power

This took place on 17 September 2015 at University of Southampton.

The agenda was very open, and included a welcome and personal introductions. We talked about the background to the idea of the group and the proposal. We then talked about the proposed aims and activities of the group and how we’d like to run the group.

Co-production is all about ensuring conversations start when everyone is in the room. I therefore purposely didn’t want to set anything in stone before the meeting. This allowed everyone in the group have a say and to help shape the focus together.

Mel Nind identified a similar platform group in Norway called Prosjektgruppen and said that they might like to meet us in the future.

What we should use the group for:

We agreed to use the group to work collaboratively around researching disability issues. We would do this in three ways:

  1. Identify important issues affecting people with a learning disability.
  1. Research these topics to see what has already been covered, and what gaps exist.

3.   Try and get research out to the people who need to hear it.

We aim to develop activities such as a conference and a seminar series in order to help spread the word about these issues and talk with other people across the UK doing research in these areas.

We will be using this site to document our journey. In time, we hope it will become an online resource for all our activities and for sharing what we are learning.

Important topics

Everyone talked about what were the main issues currently facing people with learning disabilities. Here’s what we came up with from our first meeting:

  • Personal Budgets
    • Direct Payments, Risk, unclear information from Councils, a Personal Assistance Register
  • Housing Support
  • Social Isolation
    • Friendship clubs, having fulfillment, community capacity
  • Supported Employment
  • Outcomes and Person Centred Planning

Ways of working

We agreed to meet every 2 months, rotating the location at each meeting between People First Dorset, Choices Advocacy and University of Southampton.

For each meeting, we would pick an important topic and find out what research is already available on it.

Next actions:

Set up a WordPress site. (Check!)

Invite 1 or 2 more people to join group from Portsmouth/Hampshire (AP, CJ)

Find out what research is already available on the first important topic for next meeting (Personal Budgets) (everybody)

Think about a Statement which captures what we do = wording of website (everybody)

Twitter workshop: (MN to find out – everybody to attend)

  • Andrew Power
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