Short Break Stories

Breakaway Project

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 Breakaway Project aims to provide 6 hours respite per month for 60 carers caring for a child aged12-16 years affected by spina bifida and/or hydrocephalus. The young people will be supported by trained Youth Workers in their own homes or may chose to access planned activities in their local communities.

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.
A and his youth worker tried out a local community youth group , he was very nervous but loved it. A now attends this group every week independently and has made new friends. He is currently taking part in a hip hop dance show and has a new found interest in photography. When A was asked about the new club he said “I really like it and I’v made new friends, it gives me something to do on my own” A has also participated in mini group sessions with others from the project, 1 to 1 sessions and SSBA club.

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”
Case Study C
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.
The project was very focused on individual consultations with carers and young people to determine what kind of support carers needed and to explore what level and frequency would be most beneficial to both the carer and the young person .

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.
Carers and young people were able to choose the level and frequency of engagement in the project within the funding limitations of 6 hours per month. This proved to be too long for some carers and young people and not long enough for others which allowed a degree of flexibility with some families accessing only 3/4 hours per month and others more.

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.
A high proportion of the young people we are working with do not have a care package from the local authority as they are not assessed as a priority because they attend mainstream school and their learning disabilities are seen as mild. Some of the young people who do have a care package are using this to support their personal care needs and they are still relying on their parents to support their ability to access social and leisure pursuits.

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.
Young people are matched with skilled and experienced support workers who encourage them to be as independent as they can be . Support is tailored to the young persons abilities and aims to build confidence and resilience . Young people lead and plan their activities and support workers provide support when needed. Young people are encouraged to use public transport , try new activities, initiate contact with friends, manage their money on outings and interact with staff in shops, cafes and sports centres.

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.
Engaging with 8 new families has resulted in the families receiving intensive support with a variety of issues that they have had no previous support with as well as providing them with advice and information on how to access other appropriate resources within their local community. Families are feeling less anxious and more supported.

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.
We contacted 60 families and arranged home visits to discuss the project and to ask the carers and young people if they would like to come along and meet other parents and young people. This resulted in us engaging with 8 new families for this project as well as 19 families who had used a similar project in the past .

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 .
We were able to target young people with multiple support needs on our database which holds information on additional support needs associated with both conditions. All of the young people using the service have spina bifida and or hydrocephalus and additional support needs. 80% will have learning disabilities and the majority of those with spina bifida will have a degree of bladder and bowel incontinence or both.

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 believe that SSBA have been well supported and the new reporting system on line in very good.
We used assessment forms to gather baseline information on all carers and young people using the project . We used observational sheets for each sessional worker or youth worker to record information on all interventions.

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.