Summary
A programme of flexible short breaks for families in Midlothian who have children with additional needs. Families were allocated a set number of hours with a paid carer to enable children and young people to take part in leisure and social activities.
What Wee Break Midlothian did
A programme of flexible support packages for families who have children with additional needs, delivered at various venues across Midlothian over a seven month period between September 2017 and March 2018.
Parent carers submitted applications for care support packages and were assessed before being appointed a Carer Support Worker who undertook outcome focused conversations with the family to determine their particular needs and the social and leisure activities that would be most beneficial to their children.
In addition to the flexible support packages, parent carers were also able to access a range of other practical support from VOCAL, including counselling, training and learning opportunities, welfare rights advice and peer to per support. Those carers in receipt of a flexible support package tended to use their time in a range of ways, including going to the gym or other recreational activities, meeting friends and family or simply having some time to themselves. Other parents carers took the opportunity to spend some quality time with their other children, which was not always possible when their child with additional needs was present.
The project addressed priorities areas 1, 2, 3 ,4 ,5 & 7 and successfully met all of these through the delivery of our programme of flexible support.
Lothian Autistic Society experienced some difficulty recruiting the necessary staff to provide support packages to families. This resulted in a delay in delivering some of the support packages while we found an alternative partner (The ACTION Group) to support the families that had been awarded a care package.
What VOCAL Midlothian has learned
One challenge that we had not anticipated with the project was that our partner organisation would face some staffing issues which slowed down the speed with which some families could be matched with a support worker. This had the potential to result in some families becoming frustrated or disappointed. However, we were able to manage this by having open and honest communication with both our partner organisation and with the families to ensure that everyone was clear on what was happening, when and who to approach with concerns. We learnt that this level of transparent communication is key to ensuring success.
This challenge also helped us to understand the importance of having more than one delivery partner and we have entered into partnership with two organisations for future funding programmes. This allows us to more effectively manage risks while ensuring that things are kept simple and clear for families.
Although feedback about the one to one support has been hugely positive the needs of the children and young people have been such that many could have participated in small groups or two to one support with another child or young person. As many children and young people with additional needs are isolated there are many advantages to small group work. Moving forward we will be introducing the option to share the hours allocated to reduce isolation and to maximise the volume of respite and activities provided.
Based on feedback from parents, we will also explore the possibility of providing grant recipients with more flexibility when organising support for their children and consider giving families the option to organise their own support by purchasing services directly from providers of their choice, rather than only the partner agencies who support VOCALS Better Breaks Programme. This would be in keeping with the principles of Self Directed Support and would give parent/carers the skills and capacity to take more control and responsibility for organising their care support package.
Some parent/carers also emphasised the need for more flexibility around the nature of the support on offer and the opportunity for the worker to provide some of the support within the family home. Some parents felt a bit anxious about allowing their child to leave the family home to participate in leisure and recreational activities, particularly those children that had previous behaviour of running off. Some parents felt doing activities in the house, such as games or arts and crafts, would be more relaxing and could still act as a break for both the child and the parent/carer.
The rural nature of Midlothian also presented some difficulties for parent/carers, in terms of transport and some felt that this had prevented or restricted children/young people from attending certain activities. Although the parent/carer had been allocated a set amount of hours of care support, there was no additional funding to help with the cost of getting the child/young person to and from the range of activities that they had the opportunity to engage in with their care support worker. It may be necessary to consider providing an element of funding to support transport costs in any future programme, particularly for those staying in remote areas with poor transport links.
How VOCAL Midlothian has benefitted from the funding
Better Breaks funding has allowed our organisation to benefit in a number of ways. This includes the following:
We have developed a new partnership arrangement with The ACTION Group. This has provided us with greater capacity to deal with more clients, while also offering carers more choice in terms of the type of organisation or care that is best suited to the needs of their child/young person.
The Better Breaks funding also allowed us to pilot a new grants programme targeted, particularly at parent/carers, who had children with additional support needs. Due to cuts in services and council funding, many of these parents/carers were finding it increasingly difficult to access support through a traditional routes or get a direct payment from the local authority to support the needs of their child. The Better Breaks funding has allowed us to bridge a gap in local provision and support some very vulnerable parents who would have been left without any service or support.
This, in turn, has allowed us to expand the range of services we are able to offer, while also strengthening the reputation of VOCAL across Midlothian. It has also allowed us to gain a greater understanding of the complex needs of parent/carers and the difficulties that they experience accessing support from mainstream services. This has enabled us to highlight the plight of parent carers and present strong arguments for greater recognition of their situation and the need for more support from mainstream services.
Project Outcomes
Outcome
15 children and young people with multiple support needs will have been matched with worker who will support them to participate in a wide variety of leisure and learning activities of their choosing. Key indicators of success will be the variety of activities undertaken and the number of those not
Results
13 children and young people were matched with a worker to engage in activities out with the family home.
18 parents/carers were supported to explore a life outside of caring.
Case study
The parent/carer was a 30 year old lone parent with a 5 year old son, who was diagnosed with autism and could be unresponsive and very difficult to communicate with at times.
An application to VOCAL’s Better Breaks Fund was successful and a package of care was put in place with one of VOCAL’s partner support agencies, who provided the client’s son with 1 – 1 support from a professional member of staff, who had been specifically matched to the boys needs.
The parent felt the support sessions had been a huge benefit to both her and her son. She now feels less stressed and more confident when taking her son out on her own and says he appears to be more relaxed. The time away from her son allowed her to go out for a relaxed lunch with her mum and enjoy uninterrupted adult conversations. She also had the opportunity to plan things in advance, arrange to meet up with friends and this has made her feel less isolated.
The parent/carer is also feeling less stressed with her son and has noted that his speech has been more spontaneous, he is copying things that the support worker said to him and is even talking about his feelings, which is a big breakthrough. She stated that her son really enjoyed the experience and interaction presented by the support sessions and he became quite attached to the worker. He appeared to really enjoy his support sessions and was introduced to a range activities that he had not experienced or participated in previously. This has helped the carer to relax, enjoy being with her son when she takes him out on her own and has introduced her to new activities that they can now do together. She feels that Better Breaks has helped her son "come out of his shell", has been good for his development and this makes her happy.
In her end of grant evaluation she reported big improvements in confidence and social well being, as well as some small improvements in health well being and changing relationships.
Outcome
The parents/carers of the 15 children and young people will report improved physical, mental or emotional well being, highlighting indicators such as improved confidence and/or relationships.
Results
13 children and young people were matched with a worker to engage in activities out with the family home.
18 parents/carers were supported to explore health and wellbeing goals, with 73% reporting an improvement in the health and well being.
Case study
The parent/carer was a 38 year old married woman with five children, four of them with additional support needs. The parent's 14 year old son had been suffering from a functional neurological condition, anxiety and impulsivity since the age of 11 and his aggressive and challenging behaviour was disruptive and impacting on the whole family.
An application to VOCAL’s Better Breaks Fund was successful and a package of care was put in place with one of VOCAL’s partner support agencies, who provided the client’s son with 1 – 1 support from a professional member of staff, who had been specifically matched to the boys needs.
The parent stated that the support offered through the Better Breaks programme has been invaluable as it has given her and the rest of the family an opportunity to spend time doing fun activities together and a chance to ‘breathe’.
She enjoyed spending time and having fun with her husband and other four children and on one occasion they went to Vogrie Country Park, something that would not have been possible if her son had been with them.
Her 14 year old son was able to engage in a range of sports and leisure activities with the support of a professional worker, including swimming, cycling, football and climbing. The boy’s mother states that this has brought him out his shell and increased his confidence quite significantly.
This has had a very positive impact on the parent/carer’s health and well being as she felt that she did not spend enough time with her other children and at times felt she was neglecting them by spending too much time looking after her 14 year old son.
In the end of grant evaluation the parent/carer reported a big improvement in her health and wellbeing and in the relationship with her partner and other children.
Outcome
Carers/parents and children and young people will be given the opportunity to express preferences about and make choices concerning the selection of the worker who will support them.
Results
13 children and young people were matched with a worker to engage in activities out with the family home.
18 parents/carers were supported to explore a life outside of caring, with 82% reporting more confidence in their ability to shape services.
Case study
The parent/carer was a 41 year old married woman with a 5 year old son who had complex additional needs. The client, her partner and son stayed in the same house as her parents and sister. Their son was diagnosed with ADHA, displayed some very challenging behaviour and needed constant attention and 1-1 support. The child’s behaviour impacted on the entire family, with them all living in the same house and this caused a great deal of stress and animosity amongst family members.
An application to VOCAL’s Better Breaks Fund was successful and a package of care was put in place with one of VOCAL’s partner support agencies, who provided the client’s son with 1 – 1 support from a professional member of staff, who had been specifically matched to the boys needs.
The support sessions allowed the client to attend a regular training course with her partner and also attend some social events, which her son would not have been able to cope with. The client had not been able to enjoy time away from her caring role previously, as she always felt guilty leaving her son with her sister or parents and was aware of the pressure and stress it caused them. The regular sessions with the support worker allowed the boy to spend some time away from the house and his family and undertake a range of recreational activities, while also giving the carer, her partner and the rest of the family a break from the boy’s behaviour
In an end of grant evaluation carried out with the carer, she reported improved well being, a better relationship within the family home and greater confidence in her caring role.
Outcome
15 children and young people with multiple support needs will be matched with a worker to engage in activities out with the family home assisting carers to feel better supported to sustain their caring role. Parents/carers will report positively against key indicators such as improved health and we
Results
13 children and young people were matched with a worker to engage in activities out with the family home.
18 carers were supported to reflect on the sustainability of their caring role and support that would be beneficial them and their family, with 82% reporting improved confidence in their ability to shape services.
Case study
The parent/carer was a 30 year old lone parent with a 5 year old son, who was diagnosed with autism and could be unresponsive and very difficult to communicate with at times.
An application to VOCAL’s Better Breaks Fund was successful and a package of care was put in place with one of VOCAL’s partner support agencies, who provided the client’s son with 1 – 1 support from a professional member of staff, who had been specifically matched to the boys needs.
The parent felt the support sessions had been a huge benefit to both her and her son. She now feels less stressed and more confident when taking her son out on her own and says he appears to be more relaxed. The time away from her son allowed her to go out for a relaxed lunch with her mum and enjoy uninterrupted adult conversations. She also had the opportunity to plan things in advance, arrange to meet up with friends and this has made her feel less isolated.
The parent/carer is also feeling less stressed with her son and has noted that his speech has been more spontaneous, he is copying things that the support worker said to him and is even talking about his feelings, which is a big breakthrough. She stated that her son really enjoyed the experience and interaction presented by the support sessions and he became quite attached to the worker. He appeared to really enjoy his support sessions and was introduced to a range activities that he had not experienced or participated in previously. This has helped the carer to relax, enjoy being with her son when she takes him out on her own and has introduced her to new activities that they can now do together. She feels that Better Breaks has helped her son "come out of his shell", has been good for his development and this makes her happy.
In her end of grant evaluation she reported big improvements in confidence and social well being, as well as some small improvements in health well being and changing relationships.
Outcome
The 15 children and young people provided with a worker will be supported to identify and participate in activities they will enjoy, including many mainstream activities.
Results
13 children and young people were matched with a worker to engage in activities out with the family home.
13 workers were recruited from a variety of backgrounds to ensure meaningful choices for parent/carers, families and children/young people.
Case study
The parent/carer was a 49 year old lone parent who had 12 year old twin daughters who both suffered from ADHD, high anxiety and challenging behaviour.
Two separate applications to VOCAL’s Better Breaks Fund were successful and packages of care were put in place with two of VOCAL’s partner support agencies. This provided the client’s daughters with 1 – 1 support from professional members of staff, who had been specifically matched to the girls needs.
The opportunity to choose between different support organisations proved to be beneficial on this occasion, with the carer deciding to use two different agencies to support each of her twin daughters. This allowed her to select the agency and worker which best suited the needs of each of her daughters.
The parent/carer also organised the support for her daughter to take place at different times so that she was able to spend some quality, one-to-one time with each of the other twins while their sibling was engaged in activity with a support worker. This allowed the carer to do things with each of her daughters that would not have been possible if they were both together.
Her daughters also appeared to enjoy the opportunity to participate in a range of mainstream activities, including swimming, badminton, skiing, as well as visiting local parks and libraries. This appears to have made them more aware of the range of activities that are available to them in the local area and how easy it can be to access some of these services.
In the end of grant evaluation, the parent/carer reported a big improvement in the relationship between her and her daughters, as well as an improvement in her social well being. She also stated that she no longer felt guilty about not spending enough one-to-one times with her daughters and was looking forward to them bonding, while doing more fun things together in the future.