How we have involved people in developing and delivering our activity?
In the initial stage the information sessions were an invitation to comment on the project idea and to get input from potentially interested participants.
As a result of that feedback we developed a 'preparing to become a care co-operative' programme. This is an additional layer to the programme identified in our workplan and focuses on the people getting to know each other and to explore the concepts before committing to form a care co-operative.
Feedback is invited after each session and informs the structure and content of the next session.
How have we built on people’s strengths?
We have explicitly invited people to recognise their own strengths, skills and knowledge.
The programme sessions for the families (Youth in Transition) are a forum for sharing these and developing relationships and connection.
The young people with learning disability quickly made it clear they wished to have part of the session separately from their parents. Their siblings (4) also joined with them.
The 'breakout' session covers an element of the topic being explored by their parents but facilitates the young people discussing it in their own way.
We use an iPad to record their sessions so that their feedback can be shared without asking them to repeat themselves. Their interest and concerns are kept at the centre of the programme.
The remaining five sessions were designed with the families - they identified the topics and how they wished these to be explored.
The women's group members have all identified social isolation as an issue for them and look forward to being with other women and sharing their varied experiences as employer's of PAs and users of services.
This skill and knowledge sharing is recognised as a key strength in coming together and of being part of a care co-operative.
'Encompass' family members are testimony to the strength within people in the face of great challenges and adversity.
Their pioneering stance years ago in refusing to let their children be put into institutions is acknowledged by the other potential care co-operative members.
One of the mother's will be speaking with the 'Youth in Transition' parents and is a member of the over-arching advisory and self-management group which is in an early stage of development.
What connections have you had with other organisations?
When we presented at the conference we were confident in addressing the challenges put to us by delegates and emphasised the evolving nature of the project and its focus on co-design and production.
Feedback included, "the use of graphics to tell your story is very effective - can I have set of those for the 4 options please?" and "this is an exciting way to work within the self-directed support framework, I look forward to hearing more about it in the future".
The project's work is of great interest to Self-Directed Support Scotland (SDSS) who invited us to showcase progress to date at the national conference.
We have met with the SDS Rights Project in Edinburgh and C-change in Glasgow both of whom are interested in the legal aspects of developing alternative models of support. We invited Housing Options to present at the last session with the young people and their families as part of the conversation about future goals for the co-operative.
The planning for a neighbourhood co-operative has come about from our connections with 'The Haven' a community centre in South Queensferry. This was offered as the setting for our information coffee morning and we are building on that with our visits to the local GP surgery.
We are in discussions with other organisations in our network e.g. LCiL (Lothian Centre for Inclusive Living), Thistle Foundation and Inclusion Alliance, whose input we will be using as part of the 'preparing to become a care co-operative' programme. Advocacy work has also led to wider conversations with providers and the statutory sector.
What have we learned so far?
5 care co-operatives for disabled people and their families or allies over 3 years -
This was our pilot co-operative and will be supported to develop as a self managing co-op. It is made up of three families with learning disabled adult children with complex health needs (aged 40 - 55) and their siblings
Our Future in Our Hands
Supporting Families to find Play Opportunities in South Queensferry
EDG is currently working in South Queensferry with families to develop play opportunities in the local area. This is focused on working with families to identify their needs and different kinds of play opportunities as well as looking into venues where such a group could be held. If you are a family with a young person with special needs in the area and would be interested in developing a group then do get in touch with Lindsay on firstname.lastname@example.org.
As we approach the end of year two we want to recognise the progress of 8 families who are setting up a care co-operative to manage the support of 8 young adults with a learning disability. In the last year and a half they have spent time bonding, creating a charter, members agreement and memorandum and articles so they can register as a company. A lot of progress in a short time!
Their main reasons for coming together as families are so the young people can be supported to identify and follow their dreams and aspirations, pool resources to access more cost effective and bespoke support and to forma an extended community of families who can offer practical and emotional support.
‘The Street’ is so-called because it is different from the other coops in the project which bring people together because of a common interest or need for a particular kind of activity or support. In The Street, we invite people who live in the same locality to come together as a community. So members may gather to seek (and offer) support for all kinds of different reasons. It takes us back to the true essence of community, where natural supports build and we celebrate diversity.
We took the decision to end the Community Gather in June. The Gather took the form of Cooperative Community Meal; It was held on the 1st and 3rd Tuesday of each month at the Haven in South Queensferry. It was free and open to ANY community member. Unfortunately, numbers were insufficient to make it viable. We are exploring other ways of developing co-operatives in the area.
A group of four disabled women have come together to provide each other with emotional support and practical advice about issues around the day to day management of their support packages. A big theme which emerged over the first year was that they have all had difficult experiences where health and social care professionals have shown a lack of empathy, knowledge or understanding about their conditions and support needs. On many occasions this has led to a decrease in their mental and physical health.
The women are developing a film resource for professionals to support them in delivering the personalised care that as 'experts in their own bodies' the women see is needed.
With funding from Big Lottery (The National Lottery Community Fund), we are supporting groups of people to establish the first ever self-managing care co-operatives in Scotland.
EDG has been working with people with learning disabilities and their families for over 30 years. In recent years many families and individuals have made it clear that they want to have more control over the way support is delivered. People are looking to use self-directed support to design and manage innovative and bespoke support. This will give people the best opportunity possible to live meaningful lives where they can make their contribution to the community and be valued.
There are three main learning points to date -
1. People need a longer timeframe to come together and 'get know each other' before they can 'sign-up' to a care co-operative (the families in the pilot had known each for many years and this made this stage relatively quicker). As a result we have introduced a 10 session preparation programme.
2. Provision of direct support including advocacy prior to and alongside the programme is essential for people to be able to engage with future planning - we had identified this as an element in our application but it has proved to be even more important in engaging interest
3. Family sessions with adolescents require a different approach - when we initially designed the Youth in Transition family workshops, we drew on our experience of delivering “Big Plan” sessions and planned to adapt this methodology to suit the different inputs, outputs and outcomes required in developing the co-operative.
Big Plan methodology involves inviting ‘family supporters’ to join parents and their young people with learning disabilities in teams. Each team sits at a table and uses Person Centred Planning tools to support each of the young people to develop a plan to achieve their dreams.
It soon became clear by their behaviour that the young people and siblings involved in Youth in Transition sessions were unhappy with the team set up. They kept moving away from their team tables and over the first two sessions gave feedback that they wanted to be have sessions away from their parents, with their peers and siblings and social time for themselves. The parents were also showing stress and an inability to focus on the sessions whilst trying to manage their young people’s behaviour.
We therefore decided to trial a different approach in Session 3, whereby the young people and their siblings spent part of the session in another room. This was extremely successful. The young people and their siblings were very clear about why they were attending the workshops and what they needed from the sessions to enable them to contribute more fully, which were to plan for the future and to spend the sessions away from their parents, respectively.
The siblings also said they wanted some ‘sibling only’ time for mutual support and to discuss issues that are of concern to them. The parents gave feedback that they were able to engage more fully with the session without the young people in the room.
We therefore repeated the process in Session 4 and the young people were very keen to get away to their ‘own’ session, such that we have decided to run young people and/or siblings’ sessions in parallel with that of their parents. We are covering the same topics with each of the groups, using appropriate methodologies, for example when parents are considering housing options, the young people will explore ‘My ideal home’. Siblings will consider how their brother or sister’s housing options might impact on their own choices of home in the future.
Outwith the project we are looking at supporting the establishment of a support worker's co-operative to run in tandem with the neighbourhood co-operative as a potential solution to the on-going crisis in recruitment to the care and support sector.
So watch this space for further updates!
What difference do we think we are making?
"Our Future in Our Hands" formerly known as "Youth in Transition" -
all the parents were interviewed at the start of the programme and asked about their personal confidence in making decisions about their young person's future and about their concerns.
All expressed anxiety and a lack of knowledge.
One said "It's that Donald Rumsfeldt moment, known unknowns and unknown unknowns...."
Each session is evaluated and the feedback used to inform the next session - see learning below.
The evaluator's last report stated "the majority of parents say that they are more confident as a result of participating in the project, citing reduced isolation and that they have access to people and advice about how to secure a positive future for their young person that they wouldn’t have had otherwise".
Although they recognise that it is still a daunting prospect, they report that their confidence to deal with it is enhanced by the sense of not being alone in the endeavour.
"More confident that a co-op would be a good place for S and her friends"
"More because I can see it can be a shared problem and we have access to people/advice we wouldn’t otherwise. Even if it is still daunting".
The young people told us that they wanted to have time away from their parents, "spend time with our friends" and during the sessions have offered each other peer support, "I am anxious about college but J told me it was good and that he would show me around".
Parents valued the direct support/advocacy offered, "I got a letter from DWP today. M is getting the enhanced rate for both living and mobility. So that’s excellent. Thanks so much for all your help and advice with the form - I’m lucky to have had your support"
Women's Group - the individual women all commented on their isolation and the lack of acknowledgement of the emotional impact of the challenges they faced. They view this as a key driver in coming together to explore a care co-operative approach.
Provision of direct/advocacy support has been regarded as very beneficial with feedback including, "I could not manage when my PA service broke down, taking charge of the finances was too much, with your support in arranging a meeting with LCiL and social work I feel it is back on track" and "support to negotiate a new budget made a real difference. I look forward to the women's group as a way to share some of these experiences and hear about ways other people have managed"
'Encompass' - "without your support in challenging the local authority we would be even further away from our goal of our sons being supported in their own homes and us being able to step back" and "knowing each other through the co-operative helps us to handle tricky situations better, we talk, we want to resolve things"
South Queensferry - this is in a very early stage but the interest of the GP and some conversations to date point towards a positive impact at a neighbourhood level.
Our work to clarify the status of care co-operatives in terms of regulation with the Care Inspectorate will have a benefit for future co-operatives and families wanting to come together.