A story by Scottish Spina Bifida Association
The project has delivered 61 one to one sessions for 27 young people aged12-20 years and provided respite to 50 carers .The coordinator has carried out 27 detailed assessments of needs for 27 young people and 50 assessment of needs for 50 carers.
Young people have been supported by staff to plan and access activities e.g. attending local youth clubs, meet friends for cinema and bowling trips, participate in community events, visits to the science centre,art gallery , shopping , sports etc.
Carers have been able to access gyms, visit relatives, pursue hobbies, relax and have time to themselves.
The Project Coordinator will carry out detailed assessment of need for the carers and the young people
Tip 1:Providing opportunities to consult with both carers and young people prior to the service starting means that the project is shaped by the needs , ideas and enthusiam of the people who will use it and ensures a good level of engagement .
Tip 2:Having skilled , confident and knowledgable support workers means that carers are confident and relaxed about the short break they have when their child is out and about. Young people's confidence is increased because support workers know what levels of support are required to promote independence.
Tip 3:Using simple but effective monitoring tools which are part of the assessment and review process means that young people and carers don't feel as if they are under pressure to complete forms and questionnaires. Recording feedback should be part of the project and as informal as possible.
Since beginning the project, staff and his family agree A is now much more confident and has higher self-esteem. The thought of making friends is no longer frightening and he wants to be more independent. His mother says that A “ has come out of his shell, has lots of new friends which has lifted his confidence, it really has turned his personality around, He’s full of beans when he comes home and can’t wait to go again”
Case Study B
Before the project started, B was very shy, lacked confidence and self-esteem, she was socially isolated and has a longing to meet people her own age. Due to the distance her school friends live from her and their differing needs, meeting up outside of school is very difficult. B would love to join a club and hang out with friends.
Since beginning the project B now has a support worker who she see’s once a month for a mix of 1 to 1 sessions accessing her local community and meeting others involved in the project for group outings. She is also part of the Coolio Club (youth group) that meet one Friday evening a month at the SSBA . When asked about the project B said “I love being with my friends and not having mum or dad there” and “the make over at body shop was my favourite outing so far”
Since the project began B’s parents use the time to spend together as a couple. Time and having someone to support B was their major barrier to accessing anything outside their caring role. When asked how the project had benefited them as a family parent B reported that “the project has given us time to relax, we go for a meal and spend a couple of hours together” “ we were quite nervous to begin with expecting a call from B but this hasn’t happened, she looks forward to seeing her friends and her (support worker), she’s more confident and wants to do more on her own, not having us with her all the time has made such a difference”
Case Study D
When asked how the project has benefited herself, parent D said “it has given me regular time to do the things I’v really wanted to do but never could such as my reiki course” She highlighted that she could never take up a course like this in the past because finding the time and childcare each week was impossible. “ D’s support was arranged so that I got the time when I needed it.”
Another point made was that after seeing such an improvement in D’s confidence and his enthusiasm for his sessions with his support worker and his clubs, she grew more confident and it made her think what she could do for herself knowing he was happy. Now that her course has finished she will be taking up swimming and a sewing course. Having her own interests outside the family and being able to meet new people has had a positive impact on her and her family as a whole. Consultation process was through building positive relationships with carers in the first instance and through a gradual building of trust and good communication.
Carers needed to feel confident that their young person would be having fun and doing things that they wanted to do while they were away from their parents. Young people were keen to have support from young enthusiastic, cool support workers who understood their likes and dislikes and encouraged them to think for themselves.
The project also responded to requests from young people to meet with their friends for activities and resulted in some groups of between 2 and 4 young people meeting together with support workers to go to bowling or watch wheelchair rugby etc. Several parents have also requested times that coincide with hobbies, courses and leisure pursuits on specific days and times on a regular basis.
Carers also tell us that they feel that the only respite on offer is not appropriate to their young peoples needs and would involve the young people being slotted in to an inappropriate peer group.
Funding has provided regular opportunities to meet with others at youth groups , events and on small group outings. Young people report that they feel more confident in their abilities and less socially isolated.
The biggest challenge has been with recruitment and retention of support staff. Ideally the project would benefit from a bigger pool of sessional workers working less hours so that we can accommodate the young people and families who all seem to want weekend respite.
This has been very challenging as sessional workers want to work a higher number of hours but are being limited to weekends by the needs of families and we need more workers to cover weekends.
The 8 new families have had very little access to support in the past and we are now providing intensive family support with a variety of issues for these families. We hope that accessing the project has acted as a "gateway" to them accessing support from our other services at SSBA and from external services through signposting .
Those with hydrocephalus have varying degrees of impaired communication and social skills and 4 young people also have a diagnosis of autism and 1 has cerebral palsy. It is also relatively common for young people to have visual and or hearing impairment associated with hydrocephalus.
We used key performance indicators scaled from 1-5 to measure communication, mood , engagement , interaction and independence skills. Carers were asked to rate their level and frequency of short breaks from their young person and also their ability to access social and leisure pursuits.
We also rated more soft outcomes like , anxiety levels and confidence. All results will be analysed and reported on in the final report.