A story by Carers of East Lothian
We provided breaks through a person-centred approach, supporting over 30 disabled children and families to access the activities of their choice, including individual and group activities.
We built on local connections and strengths to increase access to resources.
What Children Inc did
In June 2016 the Project Coordinator and Advisor contacted families, mainly from the local playscheme waiting list, and met with them on what would make a good summer. We offered £200 grants to 10 families. They chose the things that would work for them and they reported back in September with photo’s and accounts of their experience.
The grants were used in various ways to meet individual needs and included trips and activities, a bike and an Ipad. Several parents presented their story in person at a wider event with families and providers in September. We also identified summer opportunities and ran a family day at the Museum of Flight. We advertised the support & activities on Facebook and through contact with social work, the carers centre, schools and youth work.
Family visits took place from September and we identified in more depth what would work for individual children and their families. In December we organised a Christmas party. Parents took the lead in planning and organisation for the event which took place on Saturday 17th December. It was so successful that we ran a similar but bigger event in March, attended by 71 family members and 14 professionals and potential providers to meet the families. They also met our volunteer, Ashleigh, and saw her presentation on her experience and of getting Self Directed Support.
In February this year we organised two groups based on the requests from the family meetings. These ran on Monday and Tuesday evenings for 8 weeks to the end March. They took place at two venues, the Gatehouse and InverEsk Cafe in Musselburgh. The Monday group had a room where parents could stay and chat and the Tuesday group where most parents left the children with us. Feedback suggested that both groups provided what the child and parents wanted and worked well for them.
The final breaks of the year were organised as an Easter programme with activity options offered and chosen by families. They included trampolining (Portobello), Lego groups (MECA Centre), a film event (Tranent) an Easter Egg hunt (Musselburgh), Animal Encounters ( MECA) and horses, group and an individual sessions.
‘We did something different for our family. I never thought this would be an activity we would try. Having a bike has been a gift for my family and myself to go for a ride after work to clear my head’.
“Jason loves to go to the group and his mood is lifted and he is becoming more confident with other children.” “it is good respite for me knowing that Jason is safe while I can spend time with his sister”
Her mother said. “She loved it. I have never seen her smile so much. It made her day and mine. Amy is not good around strangers so the horse riding was great as a one to one. Amy also attended the Easter animal day which she loved. She loves animals and also knows another child who was going so that made things easier.”
What Carers of East Lothian has learnedThis funding enabled Children Inc to set up and work in an innovative way using co production and the principles of self-directed support. We have learned that there is a lot to be done to change culture and practice in this area. We began with the unexpected challenge of losing our lead partner and identifying a new partner to support the project until we could become an independent entity. We have a focus on choice and control for families and are working to build connections with others in the community who can assist in this approach.
We have prioritised the involvement of parents on our Board and want to ensure that we hear the views of disabled young people to inform our personalised breaks. Everything we have done had been informed and decided by those with direct experience. We have prioritised those less likely to ask for support through our wide range of contacts and we have more work to do to reach the most isolated and excluded.
We need to work more on contact within schools and work to identify what works best for families and how we can open up ordinary places whilst promoting children’s confidence and friendships. We are learning how all of these things will benefit children, young people and the whole family.