Breaks 4 All
A story by Capability Scotland
We have set up an accessible Youth Group that runs for 5 hours every fortnight for 12 children and young people from rural areas within Clydesdale. This group has become extremely important to 7 children on the Autism Spectum who were having real struggles accessing or enjoying other local clubs and groups. This has meant a shift in focus towards providing intensive 2:1 support for these kids as it was felt that the benefit of providing this kind of support for children so often excluded from other play activities would be transformational for their families.
Our Youth Group provides such a positive, confident and intensive approach to interacting and connecting with children whose behaviour has often been deemed ‘too challenging’ that parents can then actually experience the benefits of regular pleasant breaks as opposed to irregular stressful ones where they are so worried that their child may be self-harming, hurting others or feeling left out that they get no meaningful break at all.
We are also providing intensive outreach in their own homes to 2 children whose difficulties have thus far stopped them from feeling able to leave the house without their parents and from having a social life outside of family life. Our outreach workers have built very good relationships with these children and are progressing towards accompanying them to local clubs.
What might seem like very small steps – feeling comfortable enough to sit calmly and chat to a worker or play a card game with them- are huge developments for these children and have taken intensive and careful rapport building by outreach staff. Progress is built on at every outreach session and leaves parents with a the realistic expectation that their children will soon be able to leave the house with the worker and attend a local club or other play setting.
Our aim was to improve the quality of life of disabled children and young people in rural areas and - by supporting them to access play opportunities independently - provide regular short breaks for their parents and carers.
Having regular short amounts of time away from caring responsibilities strengthens family relationships, allows parents to spend time with their other children or with each other and relax in the knowledge that their children are well cared for, well stimulated and having fun.
Tip 1:Successful inclusion and flexibility is what enables a great short break for a carer of a disabled child who needs it most. Staff have to be committed and positive about working with children whose behaviour can present challenges to themselves and to others.
A project's commitment to staff must therefore be the right training, all the time they need to debrief at the end of each day and all the support and guidance they might need.
We've also seen that flexibility within a structure is really important to disabled children and parents - a 5 hour session sounds great in terms of the break for carers but it is can be too long for some of our kids, they just get too wired or too tired - and so we would like to be able to offer flexible activity sessions within the same block of time to children in the future.
Tip 2:Do not be limited by a demand assessment. Our project design was based around an extensive consultation with parents and carers in 2012 on current leisure provision for children with additional support needs in South Lanarkshire. Feedback from parents of disabled children indicated a real gap in accessible play provision in rural Clydesdale and suggested that weekends were a time of social isolation for disabled children.
While our response to this consultation has helped to both identify and support some of the hardest to reach rural families, after a consultation with our parents we now feel that asking them to travel to Carluke for the Youth Group may well have inhibited early take up of places and that a number of playschemes in semi-rural towns and villages such as Forth, Lanark, Strathaven might have be more attractive to parents of disabled children in South Lanarkshire. Also the age limit of 12 inhibited many families with teenage children the opportunity to access. This would be increased to 16 in any future delivery
Tip 3:If you can use your own venue that makes life easier - we have had to move the venue of the Youth Group twice which has been difficult to manage for the children we support and has presented some challenges in terms of repairs and maintenance. It is better to have your own building that you can adapt as you wish and to always be in the position of being able to act immediately to resolve building-related issues rather than having to wait for other organisations to respond to them.
This was creating tensions and family dynamics that were pushing some parents to crisis point. At our group the children choose to paint, draw, construct models, play football and other ball games, play parachute games, make assault courses, use a soft play area, sensory toys and their own imaginations to interact meaningfully and joyfully with staff and each other.
The group allows structured choice in a relaxed atmosphere where our 2:1 staffing gives children the attention and support they need to feel confident and calm enough to join in with others - be it in games, chats, circle time or during relaxing or defusing 'time outs'. In this atmosphere children make real friends outside their own families, for the first time in some cases, they laugh, joke and thrive.
The children communicate and make choices about activities using words, makaton, gesture, and PECS (symbolisation) and we use written 'blog sheets' to share this between parents and staff. Parents of children who are non-verbal report back that our familiarity and support for inclusive communication makes the group so much more meaningful to the whole family as parents and siblings get to know exactly how a child has found their time at the group and can discuss things that have excited, interested or troubled them when they go home.
Antony, who is coming up for 9, has found playing with other children at school and in other play settings very difficult. He loves the group, his mum says that he 'counts sleeps' to know when he's coming next. Antony has ADHD. He can struggle to concentrate, share and relate. He has lots of energy so running, skipping, climbing through tunnels and chasing games with staff allow him to let off steam and then he can settle down to a more concentrated activity with other children or on his own later in the session. Antony loves arts and crafts and he always paints or makes his mum something to take home with her when she comes to collect him, which she thinks is great as she doesn't have much to show off about him from his time at school at present.
She says that Antony is taking turns when playing with other children at school now because of the support Youth Group staff have given him with sharing. His outlook on life is a lot brighter because he has new friends and he feels as though the staff at the group really like him and expect the best from him.
She said that knowing fully trained and experienced staff are able to support Antony has allowed her 'peace of mind', and a regular slot of time she can rely on. She uses this to go to the gym near Lanarkhill. Her mental health has improved 'dramatically' as she feels less stressed and much more able to cope. She says the impact of having some time to herself is 'incredible'. As a single parent she says it has really improved her relationship with Antony as well. She knows he will sleep well after Youth Group and for the days leading up to it he is excited and in a good mood.
Andrew's mum, another parent who was really struggling to cope with Andrew's behaviour at home tells us through our regular feedback e-mails that Andrew has successfully learnt to wait for things at the club and has 'transferred this new patience into other activities. As a result, we now feel confident about taking him abroad on holiday next year as we feel he will now be better able to cope with the waiting at the airport. This has given our whole family a massive boost - freedom!' After 5 months almost all of our parents and carer's started to report overall improvements in their energy levels, mental health and feelings of well being.
Parents of children on the Autism Spectrum are under particular strain. They have the myriad of challenges and responsibilities that go with nurturing, protecting and managing children with challenging and unpredictable behaviour, but also have to explain their children to the outside world and to adults who interact with them. This, at the same time as holding down jobs (where this is possible), looking after other children and keeping important relationships afloat.
Janet who looks after her autistic sons 8 year old Jack and 5 year old Daniel told us of her sense of ' extreme tiredness' when in the past she has tried to explain her boys to staff at local clubs and groups. She gets a break from this type of fatigue when they come to the Youth Group because she knows that our staff are used to working with her sons and really enjoy their company. Daniel and Jack now can't wait for the weekends when the group is on. That they can both come has been a lifeline to the family as Janet's husband works off-shore for 4 week blocks at a time and they have also have an 18 month old daughter.
Janet's husband now feels much less stressed and sleeps better when he's away knowing that Janet is now getting a real break. She can now spend time with her youngest and do the housework, free from the constant demands of supervising her two sons. Janet says that this regular short break has been a 'safely valve' for her family - 'without it we might have blown apart' and it allows her to take a breath and come back to herself, meaning she has the energy to give her best to all of her children.
Using everyday toys, resources, games and ideas the training demystifies 'inclusion' and enables mainstream childcare staff to be more prepared to meet the needs of children with additional support needs. We will use the experiences of supporting the children at our Youth Group and through our outreach work to ensure that all delgates are made aware of ways to support children with Autism Spectrum disorders and challenging behaviour.
We know that for short breaks to work carers of disabled children have to feel completely comfortable in the knowledge that their children are happy and secure, so our focus is meeting the individual needs of each child and supporting the parent to feel confident in taking time off from caring for that child.
The Youth Group has chosen to go to Jungle Book at the Citizen's theatre in Glasgow after Christmas when it's less busy and Deep Sea World in Edinburgh in the new year is on the list of wishes.
The children and their families will be a key part of the process of planning and organising these trip as their enthusiasm and commitment to it is what will make it a success. This degree of involvement is what makes the children so enthusiastic about the service which has in turn allowed their carers the breaks they need to regain some control and balance in their own lives.
Parents tell us that Breaks 4 All is so much more personal and caring than statutory respite where “it's a bit faceless really, and they don't communicate with him and we never know what he’s done or who he has been with”. Breaks 4 All compliments and integrates with family life and other statutory provision and has become a very important support for our families.
Friendships are key to better lives for these children and their families. We see where there are sparks of friendship and subtly and less subtly encourage this by group games, pairing children for an activity, talking about friendships and how to maintain them, role modelling friendly behaviour, organising outings where children can get to go out with their friends in a social group and linking parents to each other where we think their children might play well together at other times.
These informal networks are crucial to parents feeling more supported and better able to manage busy lives on top of the immense pressures that come about from caring for disabled children.
In the meantime Staff recruitment took place to fill all positions which initially were to be filled with existing staff. This proved to take longer than anticipated with pre employment checks having to be fully completed before the staff could start training. There was also a difficulty with the new registration application for the project and the two strands group setting and outreach setting requiring separate registration through Care Inspectorate which resulted in a delay in securing suitable registration which was resolved through variation to existing projects within Capability Scotland.
Referral agencies initially did not latch on to the opportunity provided by this project and were slow to refer or made inappropriate referrals. We currently still have some issues with referrals which we have raised with the relevant department and it is being addressed. The length of time it has taken from introduction to families, assessment and allocation was much longer again than anticipated on average taking around 8 weeks before the children are ready to attend.
Significant work that was then carried out with families, and whilst time consuming, has proved hugely beneficial to sustaining the places for these families, however, some significant work has resulted in families who would then after some months decline a place. We had not originally expected our cohort of children to be children with Autism and so had to adapt staffing ratios, planning and delivery to the needs of these children. Whilst this was at times a real challenge and has culminated in us not reaching all of our original targets at this stage in the project, the unanticipated benefits of providing meaningful play activities to children of parents so in need of a short break became quickly apparent.
Families of children who challenge others can too often become trapped in a very negative feedback loop, where their children are 'problems' , caring responsibilities are extremely pressured and relationships strained and behavioural problems escalate as a result. We see that none of the methods of releasing tensions that other families use - parents going to see other friends who have similar age kids, parents getting a babysitter and having a night out, the whole family getting out of the house, going for a walk, to the park or cinema - work so well or are even possible for these families.
South Lanarkshire Social Work Department used eligibility criteria, prioritisation and their own knowledge to encourage families who were most in need to make use of our service. We also used leaflets distributed by the council to reach families who were not known to us.
The Better Breaks stories website should now encourage groups and care providers to network and share experiences and best practice. This should help to improve the provision of services across Scotland designed to give families under pressure meaningful short breaks.
2. Observation and recording i.e. what was a child's reaction to a particular activity.
3. Parents’ feedback. We have used letters, phone calls and e-mails to ask parent's how they are finding the service. We now know the parents really well and chat easily with them. This way we find out how the children feel about the activities and the staff, how the whole family is coping, and what carers have been able to do with their short breaks.
4. Team meetings and supervision sessions. Staff have very regular opportunities to discuss their experiences and share knowledge around the team.