Better Breaks Edinburgh
A story by VOCAL
We provided 1-1 respite for children and young people aged under 21 and their families. Families were allocated hours with a specialist carer to use at times that suited them allowing the child or young person to engage in activities they enjoy and the families to pursue their own activities.
What Better Breaks Edinburgh did
VOCAL widely promoted Better Breaks including features in our newsletter, a dedicated page on our website and through targeted mailings and professionals enabling us to communicate with many families about the opportunities.
Families were asked to complete an application which was reviewed by an independent panel of carers who allocated hours. The application form gathered information to be cross referenced against eligibility and priority criteria in order to ensure a fair and transparent process and enabling the allocation of hours to those in greatest need.
Once hours were allocated, families were introduced to a specialist carer and supported to identify activities that the child / young person would enjoy and times that would enable the break to be a success for both the children/young person and for the other family members. As the support was directed by the families to meet their specific needs and interests each package was delivered differently some were used on a weekly basis, others less frequently and some on an ad hoc or quite intensive basis.
The children/young people participated in a wide variety of activities in the community across the whole of Edinburgh supported by their specialist carer including trampolining, visiting libraries, museums, parks and the cinema as well a going out for hot chocolate or food. While the children/young people were being cared for parents and siblings engaged in an equally diverse range of activities, going to the shops, catching up on paperwork, going to the gym, reading a book, visiting friends, spending time with other children who they felt can at times be a little ignored.
What VOCAL has learned
Families welcome the opportunity to shape the their own respite packages and like being involved in the shaping of the own support. Some families need considerable support to engage with a self directed package. especially those who have not had experience of doing so before and families for whom life is unpredictable can find it particularly challenging to maintain contact with the breaks provider.
Working with more than one partner is beneficial to ensure that breaks are really responsive to families needs and can be taken at the times and frequency they desire.
How VOCAL has benefitted from the funding
Better Breaks has supported us to strengthen our offer to parent carers. It has also helped us to improve our brokering skills and fully understand the type and level of support that some families need to engage with self directed respite.
52 children and young people will have participated in activities that they enjoy outside the home.
53 children and young people participated in flexible respite activities. The children and young people took part in a variety of activities while being supported by the specialist carer including the cinema, museums, going to the park, going swimming, going out for food or hot chocolate.
A mother who carers for two children with additional needs a daughter who is 20 years old and has a learning disability and Autism Spectrum Disorder and a son who is 13 and has Autism Spectrum Disorder and epilepsy. Mum applied for flexible respite to take her son out to do activities allowing him a break from his sister and allow mum and daughter some quality time together and occasionally if coordinated well with other support mum a break from both children. At the time of the application mum reported that the house can be quite fraught and that as a single parent to two children with additional needs she can find it hard to give everyone the attention they need and that she rarely has time for herself. She noted that she is well but that feels her health and wellbeing was not as good as it had been. The family had accessed flexible respite through Better Breaks several years ago. That time for her daughter and that her daughter everyone had really benefited from the time apart and that spending time with another adult had been helpful to help her daughter feel ‘important’ and it had ‘helped her mature’. She felt spending time with someone else would be good for her son not just because of the break it afforded everyone but that it might help with some of his anxieties, to have a bit of fun and become more independent. Following the breaks the carer reported ‘it was brilliant’ and ‘we would have loved more’. The son and worker had gone to the cinema, to the park and to cafes. He had enjoyed going out with someone other than his mum and was happy to meet the worker at the front door and head out after a few visits. Mum noted he had been nervous at the start but had become more confident over the weeks. Mum really felt the increase in confidence really positive and she hoped it would be sustained.
52 carers will use flexible respite packages to enable a short break from caring. Carers will report an improvement in their own health and well being and in that of the child or young person they support.
53 carers accessed flexible respite packages to enable a short breaks form caring. Carers used the breaks in a variety of ways to address health and well being including going to the gym, resting, addressing chores that caused anxiety, seeing friends and spending time alone. Carers consistently reported having respite care they could trust was helpful as they were able to relax fully while they were away from their children. Several carers noted that the self directed nature of support was really useful as that enabled them to arrange the respite for times it would make the biggest difference.
A carer who has recently moved to Edinburgh after several years living in Europe applied for flexible respite to support her 14 year old soon to take part in activities outside the home. Her daughter has ASD and ADHD. The carer and child with additional needs share their home with the carer’s husband and another child. The family have no informal support network in Edinburgh as their wider family leave in other cities. At the time of application the carer noted her health and well being was a very important issue saying she was looking for "time for myself". carer said "I've been struggling, its been too much, 7 days a week", "he is super hyper and my husband works full time’. The carer requested respite for Saturday or Sunday mornings having noted these can be flash points for confrontation in the home as her son becomes restless without the routine of school. The daughter was keen to use the time with the worker to ‘do fun things’ and they went out for food and to a buskers club. The carer reported ‘he has loved doing this’ and that the family will try and get out and about more now as they can see the difference it makes. They have also decided to try and look for a regular club as their son has coped so well with the one to one sessions. The carer noted her son with additional needs is full of energy and used to family dynamics being centred around his needs. Now with the support being provided at a weekend sometimes the carer has been spending time with her husband and her other child in the house or out and about for example at the cinema. The carer noted that ‘this has been so good’, ‘I feel that I can focus my attention on my son and husband in a way I can’t normally’. The carer noted that she had returned to the house on several occasions before her son and the respite worker and upon entering the house and has become surprised at the level of peace and quiet within only then remembering that her son is out. The carer reported ‘ this perhaps should not be so surprising but it is so unusual. When he is there you know he is there is so much noise and commotion.’ The carer noted on those times and at others her son was out with the worker she had felt ‘ a sense of calm and peace without his constant demands and pressures’. The carer reported feeling a significant improvement in her health and wellbeing most notably in her emotional and mental health, noting that she felt less anxious, more in control, less guilt and worried and ‘generally calmer’.
52 carers will use flexible respite packages to enable a short break from caring responsibilities. All carers will report an improvement in social wellbeing and/or changing relationships and/or health and wellbeing.
53 carers accessed flexible respite packages to enable a short breaks form caring. Carers spent their time in a variety of ways to enable them to have opportunities outside caring. Some carers spent time outside their home with friends and family, others chose to relax at home, reading, etc.
The parents of a child aged 11 who has complex needs, is a wheelchair user applied for and were awarded flexible respite. The family are in the process of being assessed for a housing adaptation to create a downstairs bedroom for their son as at the moment the only way he can move between rooms is to be carried. This is becoming increasingly challenging for his parents due to his size and has become something he no longer enjoys as he matures. The family used the hours to enable the parents to have ' date night' following the breaks mum reported they had been to the cinema, for dinner, to the theatre and out for a walk. The carer noted 'I feel a lot brighter' 'it was so great having some respite at the weekends'. The carer said it was extremely rare for them to have time alone as a couple she said it had been easier when their son was younger but as he is now quite tall and heavy it is not possible for family members to provide support when he might be moved. The carer also reported ' it was so nice to be out ourselves and to have a conversation about us' she noted that so much of their lives are dominated by their son's support needs and currently the challenges with the housing adaptation she and her husband had talked of nothing else for some time. the carer noted that she had really felt the benefit of 'quality time' with her husband.
52 carers will use flexible respite packages to enable a short break from caring. All carers will report an improvement in health and well being and/or changing relationships and/or confidence in caring role
53 carers used flexible respite packages to take a short break from caring allowing then to improve health and wellbeing improve relationships and maintain social wellbeing to sustain caring.
A carer in her mid 50s supporting her 10 year old son who has ASD and diabetes. The carer felt that respite on a Saturday would be best for both her and her son. The carer noted that supporting her son 24/7 was quite difficult to sustain at the time she applied for flexible respite. Following the breaks the carer noted a big improvement in health and wellbeing. 'It really helps to have a break as the 24/7 aspect of our son's care is exhausting, emotionally, physically, intellectually and the break gives me time' ' knowing our son would be fine, safe and enjoying his time allows me to rest and there aid my ability to care and confidence' The carer also noted that her relationships had been positively impacted by the breaks ' I have had more time with my partner' and 'I am less stressed and less exhausted means I am better able to cope with normal things as they arise'. The carer stated she feel better able to cope now she knows she has a break soon helped her get through difficult times I the run up to the break and then after a break she felt better able to keep going.