Short Break Stories

East Park Active Kids Club

A story by East Park

We held a summer club in July 2013 with a variety of activities and outings for young people to choose from.  We are also offering an after school club four nights per week with escorted transport included. The summer club was extended by a week and exceeded its target for carers respite hours. 14 young people rather than the planned 12 attended.

The aim of The East Park Active Kids Club was to provide young people with activities which would not only be fun and stimulating but would expand their social experiences and networks and would promote the development of independence skills.

The service was offered to young people with severe and complex disabilities, including learning disabilities and autism spectrum disorder, who attend East Park School and to young people who live at home and receive a small residential respite package of support.

There were two main streams to the project:
• A short summer programme of activities which will take place over the first three weeks of July 2013
• On-going after/out of school activities during term time.



Tip 1:
Consult in advance with key people; young people, carers and other key professionals and maintain an open dialogue with them.
Tip 2:
Plan carefully but remain flexible and encourage young people to lead on activities and choices.
Tip 3:
Implement regular evaluation. Be ready to respond to carers and young people's expressed views. Remember to record informal and anecdotal views.
Ellie is a 15 year old girl who was born with a congenital physical condition which has affected the way her limbs grow and means that she has very limited mobility in all limbs. She uses an electric wheelchair. She lives at home with her mother and father and her sister who is 2 years younger than her. Ellie is a lively, vivacious and very sociable girl. Ellie’s mum described how Ellie’s favourite position when she is at home has always been at the front room window where she would watch her little sister out playing room with other children. Ellie has never been able to join them. More recently she has not been doing this so much as her little sister is now a teenager and not so interested in running about outside. Ellie’s mum said she found it really sad that as a 15 year old, Ellie had no social life and no peer group except for the young people she met at school. Coming to the club has meant Ellie has developed friendships outwith school with girls of a similar age. They do all the things girls of their age tend to do like having pampering sessions, trying on make-up, listening to music and chatting about JLS. Ellie has struck up a particular friendship with one girl and they often text each other when not attending the club.

During the Summer Club one of the activities available to the young people was a programme of music therapy. Several of the young people attending the club have autism spectrum disorder. Sean, 9, is one of these. He is hypersensitive to sound. As there were plenty of discordant and unexpected sounds during the group music sessions, when some of the other young people were inquisitively trying out new instruments, he was initially very disinclined to participate. Despite this he gradually began to show an interest in the music sessions and ultimately stayed in the room and took part. When school started back after summer he was able to participate in school music sessions for the first time.
Ben is a 12 year old boy who lives with his mother and older sister. Ben has a severe learning disability and autism. He has very little verbal communication and can frequently get frustrated when his very individual attempts to communicate his needs are not understood. He is very close to his mother who is equally devoted to him but life with Ben can be very hard. He insists on certain routines and these do not only apply to him. He insists that everyone in the household has to live by his rules. He does not need much sleep at night so his mother is frequently up all night with him. His mother guiltily admits to being glad to see the school taxi arrive in the morning as after she’s waved him off she knows she can go back to bed. She does not look forward to school holidays as there’s no opportunity to re-energise.

Last summer Ben attended our Summer Club. For his mother this turned a dreaded time of year into a more restful and productive period. Because he was being kept active at the club by the time he got home Ben was a little subdued and tired. At bedtime he settled and although he did not sleep all night he did sleep for around four hours, which was much longer than usual. Not only did his mother benefit from the rest while he was out at the club but this also gave her the opportunity to spend more time with Ben’s sister without interruptions which they both benefited from.

Danny is a 13 year old boy who lives with his gran. He has autism spectrum disorder. He really does not like change, preferring familiarity and a set routine. He can get very upset when his routine is not followed. When the summer club was offered his gran put his name down but did not think he would actually agree to attend. Towards the end of the school term the staff used a social story to tell Danny what he would be doing when school stopped. To his gran’s surprise when the familiar minibus turned up for him on the first day he did get in and went on to have a great day. He continued to attend giving his gran a well-earned break.
Derek is a 16 year old boy with autism spectrum disorder and a learning disability. He lives with his dad and his little sister who is 10. Derek requires a lot of attention from his dad as he has no sense of danger and so despite his age cannot be left alone for any length of time. Derek’s dad has a busy life as he is on his own with the children. He says he could not do without Derek’s little sister who is very caring about her brother despite him taking up a great deal of her dad’s time. She seldom has any time on her own with her dad. Derek’s sister and dad would drop him off at the summer club. She would bounce in excitedly every morning telling staff what plans she and her dad had for the day. Her dad said he really appreciated being able to spend whole days with Derek’s sister doing things and going places which they felt they would not be able to if Derek had not been at the club.

Kevin is a lively 10 year old with ADHD and a learning disability. He lives with his mother and father and big sister. His mum says he “never stops”. He is endearing and exhausting. She says school holidays are particularly hard as he is stuck indoors with her a lot of the time due to his propensity for taking off and running away when she does try taking him out. She says Kevin demands a lot of attention and for the duration of the school summer break she really cannot get much done. When we asked her what she did with her time while Kevin was at the summer club she said she just did “normal things” like giving the house a good clean, going to the supermarket without rushing and having a long relaxing bath with no interruptions. She said she really appreciated the chance to do these things and was more relaxed with Kevin and more able to cope when he arrived home at the end of the day.
We consulted with parents and young people to find out about young people’s interests and what their expectations of the service would be. Once we had that information we grouped young people together so that they could enjoy spending time with others with similar interests.

The activities as well as being fun and stimulating were aimed at promoting the development of independence skills and encouraging young people to try new experiences and expand their social networks. This meant that for parents they could be confident that their child was enjoying a productive and stimulating experience with an appropriate peer group. We have received feedback from young people and carers via evaluation questionnaires.
We consulted with parents and young people prior to starting the project and have sought their views via 1:1 discussions and questionnaires. The young people attending the service have become key decision makers about the service and frequently lead on the choice of activities for the sessions.

We are aware that personalisation and self-directed support means that carers and young people now have more choice & control. We aim to respond to this by developing a service based on service user choice.
This service is additional to existing statutory short break provision. The funding has helped us to consider best value for carers and young people given that they will wish to utilise their personalised budgets economically while still receiving a safe, quality service. It has helped us as an organisation to bridge this change in funding models and has encouraged us to consider more the benefit of volunteers and community partners in non-statutory services.
We are aware of the difficulties often experienced in transition to adulthood for young people with disabilities in particular, and their carers. As a result many of our activities become learning and development opportunities which can be used to support the development of independence skills, widen experiences and expand social networks. We provide opportunities for young people to safely engage in new activities while learning about safety, risk and being part of a team.
We provided escorted transport for our services and have found this to be very costly as the young people were from a wide geographical spread. Following consultation we have decided that to be more cost effective we will focus on the holiday clubs as opposed to the after school club which had a poorer uptake. We feel if carers are to contribute to the service it would be more cost effective for them to benefit from more hours of respite and the longer day session during the holidays responds to that.
We focused on families known to us via East Park School . We surveyed carers asking them what sort of service they felt would be of benefit and responded to that.
The majority of the young people who attend East Park School have additional multiple support needs. These include young people with additional health needs including arthrogryposis multiplex congenita, dyspraxia, central motor disorder, epilepsy, cerebral palsy, augmentative feeding systems e.g. PEG tubes.

We have several young people who have ASD and limited or no verbal communication. Most of the young people need a great deal of support with daily living skills. Most have significant behavioural issues related to their learning disability and/or autism.
We have found Shared Care Scotland as an organisation to be very approachable and supportive.Application and evaluation processes have been well thought out and developed.
Discussions with young people. Evaluation questionnaires for carers. Questionnaires for young people in appropriate formats e.g. Pictorial, Board maker etc.. We have recently been looking at the Short Breaks Evaluation Tool kit and now intend utilising that.