Flexible Family Respite
A story by Firsthand Lothian
We provide tailored 1:1 support to children with disabilities and their families across Edinburgh. Delivered in their local community we match each child with a worker who will spend 3 – 4 hours with them, weekly, on a day and at a time that ensures that the whole family benefits from our input.
What Flexible Family Respite did
We carefully matched a worker with a child with disabilities who met with them weekly for 6 to 9 months doing activities that they enjoyed both in their local community and visiting places of interest across the city. Families were encouraged to think about how they would spend their respite so that everyone could benefit from doing something they enjoyed whilst we spent 1:1 time with their child and so sessions were mainly delivered on Friday afternoons, Saturdays and Sundays. Activities were tailored to the interests of each child and included role play / imagination games, arts and crafts, rock pool exploring, going to local parks, walks and woods, singing, dancing, music, ball games, having picnics, going to the beach, making sandcastles etc as well as visiting places such as Museums, Botanics, Love City Farm, Art Galleries, Arthurs seat, Calton Hill, events at the Science festival etc. Children were encouraged to try new things and visit new places with their worker. We encouraged the family to tell us what they wanted to change as a result of our input– what they wanted to be different. This shaped the activities as we worked with the child and family to help them to achieve their goals.
Families who benefited were not in receipt of statutory support. The children with disabilities supported were in mainstream education, albeit struggling, with a number of children only attending school part –time. Due to the resurgence in Covid we reintroduced our on line group sessions which created opportunities for children to meet others and interact through the games and activities the workers delivered. We continued to encourage parents to join the Parent and Carer Group which meets on line. Facilitated by a worker it is an opportunity to meet others, share experiences and knowledge and "have a bit of a laugh".
Time 4 Mum has also continued to attract parent/ carers who need some 1:1 support to explore and access activities and places in their local community so that they can spend their respite time doing something they enjoy, that recharges their batteries and creates opportunities for them to develop social networks etc.
What Firsthand Lothian has learned
What we learned was that it important to discuss and record at least one personal goal as to what the child / parent/ carer felt was what they wanted to achieve - be it going to new places, building confidence, developing social skills, communication, being able to talk about emotions etc so that activities delivered would contribute to achieving these outcomes. This clarifies expectations of what the support is about from the outset and avoids confusion about the role of the worker. It is important to be flexible as family circumstances change over time and the service delivery needs to be able to fit in with them if it is to maximise the benefits delivered. Being able to adapt and change as children achieve goals and identify new goals is also key.
Encouraging parent/ carers to really think about what they need has been a theme that has been emerging for us in recent years as we have found many carers have lost sight of who they used to be "before life got in the way" and have not really taken the time to consider what they could do that would really benefit and recharge them a a person.
We have been really proactive at encouraging parent/ carers to connect with other parent/carers who we support through online meetings. We were able to run a a pilot of 6 x weekly Health and Wellbeing session where as well as relaxing and meeting others parent/carers learned techniques for managing stress and anxiety, share experiences and knowledge, enjoy having a chat and a "bit of a laugh" and have time to consider what they enjoy / need to maintain them in their caring role.
Some lone parent /cares who have more than one child with a disability have asked us to help them take their children out as this is something that they struggle to do on their own because of the needs of their children. We have managed to deliver this for a lone dad who benefits from being able to go to places with his sons and enjoy some 1:1 time with each of them whilst the worker spends time with the other sibling. Dad feels this is his respite - being able to spend time outside with his children and enjoy family time together - something he could not do without support. It has led us to consider this more broadly and have recently applied for funding to deliver a pilot project for families with more than one child with a disability to be supported to go to places and do activities with the support of a worker. In addition this pilot is looking to work closely with the parent/carer and support them to engage in activities in their local community and build networks of support of their own.
Some parent/carers have accessed our Time 4 Mum project which matches them with a volunteer buddy and together they explore what is available in their local community, going to activities of interest until Mum is confident and able to attend alone. Some participants have also considered volunteering to help someone else in a similar position.
Over the last year it is evident that the Covid19 Pandemic has negatively impacted on both children with additional support needs and parent /carers. We have found that more children are, in addition to their disability, struggling with high levels of anxiety and their social skills and confidence levels have regressed. We have found that significantly more children are not attending school full time however positively they are engaging and learning about life and what is around them when they are spending 1:1 time with their worker.
Positively as a result of only delivering outside of the family home in recent years feedback from parent/carers and children and young people is that they prefer the time to be spent out and about and no longer want us to spend time in the family home. Through taking children out and about it gives the rest of the family more options as to how to spend their respite time - they don't have to go out and parents can choose to spend 1:1 time with siblings doing activities together at home or just enjoy having the house to themselves, have an uninterrupted bath or read a book. As a result of this change we no longer fit the criteria of being a "sitter service" as per the Care Inspectorate categories of regulated services and, after discussion with them, it was agreed that we would need to cancel our registration as there was no other category that our new model of delivery fitted.
In terms of other funding we have secured more funding to work with "disadvantaged" children and families which allows us to support families who are awaiting a diagnosis of disability for their child/ren. This has also enabled us to support families who are disadvantaged through isolation, poverty, from BAME communities and where parents are struggling with low mood or depression etc.
How Firsthand Lothian has benefitted from the funding
We have hugely benefitted from Better Breaks funding as not only has it enabled us to be able to offer support to families with one or more children with disability who were not getting any other help it, has meant we have been able to secure smaller pots of funding from other trusts and foundations who would not have been confident to award a grant if the Better Breaks funding had not been in place. We have strengthened our working with Tailor Ed who were piloting a new group project for pre school children with autism and their parents in the city and who needed some additional worker / volunteer input to help their team deliver the sessions. Positively the workers and volunteers we supplied enjoyed the sessions and through working alongside the Tailor Ed staff learned about group work and ideas and activities they could use with children that they supported 1:1 through their work with Firsthand Lothian. They were also able to spend more 1:1 time with parent/carers and get a greater understanding and insight of their day to day situation. In addition to securing additional funding to help us support children with disabilities and their families we were able to secure funding from a number of smaller funding bodies for work with families who were disadvantaged for other reasons eg awaiting a diagnosis, isolation, lone parent families, where there is parental mental health issues, live in poverty etc. This has enabled us to provide a more holistic family support service - supporting parents in their parenting role and helping them to connect with their local community and, where appropriate, how to ask for additional support for learning for their child, an assessment for disability etc Having Better Breaks funding has helped us develop our original pilot Time 4 Mum project which evolved from realising that many parent/ carers did not know how to use their respite time or prioritise their own needs when they did have time away from caring. Positively we were able to secure funding to enable us to recruit and train volunteers to support parent / carers in their local community and the impact and sustainable difference this project is making for parent/ carers has been really positive. We have also just secured funding for this project for the next 3 years from the National Lottery. Over the last year we also secured some Health and Wellbeing funding to deliver 6 half day sessions over 6 weeks for parent/carers and parents who were isolated, from BAME communities, affected by low mood, anxiety etc . This was really successful with parent / carers feeding back that they were now using the techniques they had learned eg hand massage, mindfulness, breathing/seated yoga and arts and crafts at home when they were stressed. Activities also included community walks, gardens and a social aspect over a snack at the end of each session. We have again just recently secured some funding to enable us to run another 3 sessions for parent/ carers over the coming year and we are continuing to apply for funding to enable us to deliver this in all localities of the city.
55 children and young people with disabilities will have spent 1:1 time with their worker on a regular weekly basis, going to places and doing activities they have enjoyed, trying new things and have had fun. Activities will have included visiting places in their local community and across the city.
43 children and young people supported ( 12 less than than anticipated) and they developed a positive & trusting relationship with their worker, looked forward to their sessions and had fun. All 43 children were encouraged to try new activities and visit new places over the course of the support. This has expanded their world and delivered a range of new experiences. As a result children became more confident and because of the trust they had in their worker they were willing to step outside their comfort zones, gaining a sense of achievement about the new things they learned and did eg climbing to the top of Arthurs Seat, discovering marine life in rock pools, discovering particular interests within the museum, using the outdoor gym etc. Activities were low cost, accessible and affordable. We fed back to parents what their child had done, where they had been, what they particularly enjoyed so that as a family they could continue to do these activities in the long term.
Finn (aged 13) is an only child and lives at home with both parents. He has Autism, ADHD, Anxiety and Depression. His Mum and Dad were both diagnosed as adults with Autism, Depression and ADHD. Finn experiences 18 alters, these are different personalities that make up Finn. Finn knows each ones name, and they all have different ages. They impact upon Finn’s’ personality and interests. Finn says that this is OSDD (other specified dissociative disorder). Finn was not attending school prior to the pandemic, and during the lockdowns he was not completing any online work. Due to this Finn has become increasingly isolated and quite lonely. Finn struggles to manage his mental health and energy levels and both parents find it hard working from home and supporting him. The family were seeking support for Finn because of their concerns that he was missing out on learning and opportunities to interact socially. In addition they were concerned that his sensory sensitivities had worsened. They were keen for Finn to have the opportunity to build a positive relationship with another adult and with a view to Finn gaining confidence to go out from the family home. To ease Finn into meeting with his worker the initial 1:1 sessions were delivered over Zoom and centred on drawing and creative activities related to Finn’s interests. Finn benefitted from taking time to build the relationship with his worker and the online meetings reduced his anxiety about meeting in person and leaving the family home. Finn progressed to the stage of actually wanting to meet his worker in person. The session times were gradually built up from an hour at a time and keeping within the local community to 3 hour sessions going further afield including a trip to the Meadows, going out to a Café. Finn was interested in animals and was supported and encouraged to join a group at Love Gorgie Farm which was specifically for young people with mental health issues. Finn has… - improved confidence - is less socially isolated - has reduced levels of anxiety Finn now… - engages more regularly in outdoor sessions - is more able to manage his anxiety and sensory issues - feels more confident & comfortable in new & busier environments, eg Cafes, Museum, Trampoline Park - engages in a Young Person Support Group at Love Gorgie Farm - has secured Self Directed Support funding. Feedback from family was “J has been very patient and accommodating, which has made a big difference to Finn’s ability to engage. Taking it at Finn’s pace has meant that he has been able to enjoy the sessions when he was able to, and did not feel too bad about cancelling when he needed to as well.” “Thank you for making this possible. It has been lovely to see Finn coming out of his shell with J and being willing to go outdoors - which he hasn’t done of his own accord for a long time.” Finn found it difficult to give feedback in response to questions about the support however he did give the service an 8 out of 10. Finn enjoys….."Zoom calls where we draw together, or talk or screen share games, memes and videos. Sometimes we go for a walk in the meadows or to the hot chocolate van and talk about things.”
Parent/ carers will have enjoyed regular weekly respite to spend doing something they enjoy, whilst confident that they child with disabilities is having fun with their worker.
We anticipated 50 families with a child /young person with a disability would be matched with a worker who they would meet on a regular weekly basis for up to 6 months. As many families & children had been negatively impacted by C19 and restrictions we worked with 31 families but for a longer period of time as there were more issues to address in terms of managing anxieties, social and communication skills taking time to build the relationship and have the courage to leave the family home. This meant that 51 parent / carers received regular weekly respite from caring from their child with disability, doing something that recharged their batteries whilst confident that their child was enjoying their session with their worker. Parent/ Carers who were unsure about how to spend their respite were encouraged to access the Time 4 Mum project & think about what they used to enjoy / always wanted to try & with the support of a volunteer, explore & participate in these activities.
Mum is a single parent with 2 children with ASD - Stan (7) and Keira (4). Stan is mostly non-verbal with some words here and there. Keira is completely nonverbal and struggles to communicate her needs at times. Mum was undergoing Chemo for breast cancer which had severe and significant side effects. The family originally applied for support as Mum had no childcare in place for when she needed to attend her chemo appointments. Mum has very limited supports and she was struggling to manage her symptoms and both children on her own. Due to Mum’s health issues and the children’s complex needs, they all spent a lot of time at home. It was agreed that the children would benefit from exploring new places and experiencing new things. Mum also said she felt that she didn’t get much time alone with Stan due to Keira’s high level of need. Two workers were put in place to support both children at the same time so that mum could have complete respite for a few hours each week. Initially, to reassure the children, the workers spent the sessions altogether - exploring new places eg parks, woodland walks, cafes, soft play etc. Once the children were used to the workers and were feeling more confident the sessions progressed to 1:1, with workers engaging each child individually in activities that they enjoyed and found stimulating. It was important that both sessions were still taking place at the same time each week so that mum had complete respite whilst the children benefitted from 1:1 tailored input. We checked in with Mum every week for an update on her appointments for treatment to make sure that the day and time of our delivery was at the right time for her, changing it if required. The workers shared with Mum their plans for activities with the children each week to make sure she was ok about what we were going to do. On the first visit to the park it was clear the children weren’t sure on how to use the equipment. Keira particularly struggled with her mobility but with encouragement and a hand of support managed to participate. Keira was keen to try out new things and enjoyed the sense of achievement she got from doing something new for the first time. Stan’s worker took him to a river and encouraged him to put his feet in the water. Although he was very unsure at first he loved it and would regularly lead Laura, his worker, back to the river again and again. Stan really struggled with transitions and Laura would initially give time warnings until they eventually developed a routine together and transitions home began running a lot more smoothly. Stan was very reserved and would not communicate verbally, however as their relationship developed he began to speak to the worker - saying small words or phrases related to their play - Flower, clap hands, went fast etc. When Mum’s chemo treatment became less frequent and she was feeling a bit stronger, the workers began taking each child out at different times during the week so that Mum could spend quality 1:1 time with each of her children in the family home which she had not previously been able to do. Outcomes were: Both children developed very positive and trusting relationships with their workers – meeting them weekly Both children explored new places Both children gained lots of new experiences Both children and their Mum have now a love for places that are all close by and they can continue to visit. Both children gained confidence and independence in their mobility skills. Stan manages transitions better using techniques that work specifically for him (i.e., Time warnings, calm reminders and routine). Stan was able to practise his communication, improving every week through adding new words/phrases to his vocabulary related to their play and time together. Mum was able to focus on her health (attending appointments & getting rest) confident that her children were safe and having fun with a trusted adult. When Mum was not attending appointments, she was able to rewind and recharge to better support the children on their return. Mum was able to look at pictures and hear about the activities her children got up to after every session. Mum was able to spend quality 1:1 time with each child. She felt that this was particularly important for Stan as they had never had much of an opportunity to spend 1:1 time together. Stan really enjoyed going for a walk and having a cake with his Mum. Mum said she really appreciated the quality time she spent with Stan knowing that Keira was safe and having fun with her worker. Mum was referred to another organisation who will continue to support both children at the weekends, allowing Mum time to rest and recharge. Stan was awarded SDS funding and the family has requested that he receives support through Firsthand Lothian Keira would start singing and flapping her arms when she saw the place we were going to (i.e. the park, café or soft play). Stan would never want to leave as he was having so much fun.
80 Parents/ carers will feel more reassured in their caring role and feel less isolated and more connected to their local community. They will have more awareness of activities and places they can go with their children which will give them increased opportunities to meet other parents and carers
The total number of Parent/carers who benefited was less than expected as, in response to the negative impact that Covid19 and restrictions had on children and their families meant many children had lost confidence, their social and communication skills regressed etc so it took longer for children and parents to get used to spending time outside and in public places on a regular basis. We had found we supported children and families for 9 -12 months as opposed to 6 months as anticipated. In total 31 families ( 51 parent / carers) were matched with a worker who developed a positive and caring relationship with their child/ren with disability for 3-4 hours every week enabling the parent / carer to have some time to do something they enjoyed and that recharged their batteries. 51 parent/carers were made aware of & provided with information about groups & agencies providing information, advice & support relevant to their needs. Families were encouraged to attend new places with workers.
John is a lone parent who has 2 young children. The family have been living in temporary accommodation in 2 bedroomed flat for over 2 years on the south side of the city. Andy is 6 years old, has a diagnosis of Autism and is pre-verbal. Billy is 7 years old, has a diagnosis of Autism, Hyperacusis, is non-verbal and has ongoing cardiac issues and is fitted with a pacemaker. Due to their age & stage both boys require all aspects of personal care and support. They have no awareness of danger and are particularly at risk when outside e.g. busy roads, water/rivers, open spaces etc. Dad’s back issues prevent him from going out with the boys as much as he’d like to, and he finds it particularly difficult to manage both of them on his own. The focus of our input was to help Dad take his boys out so that as a family they could spend time at the local park, go to the beach, enjoy exploring and go on woodland walks etc. and create time and space during the sessions so that each of the boys could have some 1:1 time with Dad, whilst the worker focussed on 1:1 time with the other child. Dad and the boys were introduced to Mika and they all hit it off right away. She listened and observed Dad’s parenting style, particularly how he communicated with the boys, e.g. verbal cues, visual - pictures & photos, and the use of social stories. Weekly sessions started at the family home so that the boys would feel more comfortable with the worker and feel reassured because Dad was present. This particularly helped Andy who struggled if he was not with Dad. Initially sessions focused on encouraging and supporting the family to explore their local community and find out what they could enjoy that was nearby. Dad felt more confident and was reassured that there was an extra pair of hands to help him keep the boys safe. As trusting relationships developed with the worker the boys would take it in turns to spend 1:1 time with Dad or the Worker. The worker went on to plan different & new activities for the boys to try e.g. Trampoline Park etc. Visiting The Yard Adventure Park, specifically for children with disabilities, which gave Dad the opportunity to meet with other Parent/Carers. Dad said for the first time ever he was able to sit down at a table and enjoy a coffee, safe in the knowledge that the Worker was supervising the boys and they were confident enough to explore their surroundings without him being with them. Outcomes were: The family are now able to explore more and have identified and engaged in new activities within their local community. The family are now more aware of disability specific venues/activities which they have visited & which both the boys and Dad have enjoyed and found beneficial. Dad has been able to meet with other Parents/Carers and had the opportunity to relax and chat with them knowing that the boys are safe & happy with the Worker. Knowing that the sessions are regular & consistent gives Dad and the boys something to focus and look forward to each week. Dad feels less stressed and less isolated. The boys developed a positive and trusting relationship with another adult (Mika). Both boys are now more confident to spend time with other adults. Dad feels reassured and more confident in his parent/carer role. The family are less isolated. Dad now has knowledge and understanding of The Carers Act and what it means for him and his family. As a result of the positive experience the family enjoyed with Firsthand Lothian input Dad now feels more confident to seek support from other services. The Coordinator has signposted and referred Dad to other support services relevant to the family’s situation e.g. Family & Household Support regarding their temporary housing situation; CEC Social Work Disability Team to request a Section 23 Assessment which should enable him to access other supports for his boys; Dads Rock which offers social and peer support for fathers; One Parent Families Scotland, Vocal for Parent/Carer Support, Firsthand Lothian Parent and Carers Group and local agencies offering support and guidance around Mental Health & Wellbeing. Parent feedback “Andy is at a pre-verbal stage and often at home prior to our meet ups with Mika, Andy will walk around saying “where’s Mika” which is lovely to hear.” “Billy has been looking forward to go on walks again, he was walking around with Mika’s photo.” “Before we started having the sessions, the boys would never be able to be away from me independently, it’s great that they’re learning that it is okay.” “Having the support allows the boys to have more freedom to explore!” Dad said "for the first time ever I was able to sit down at a table and enjoy a coffee, safe in the knowledge that Mika was supervising the boys and they were confident enough to explore their surroundings without being with me."
55 children looked forward to spending time with their worker on a regular weekly basis, doing activities & going to places they enjoyed. 50 parents received regular weekly respite of 3-4 hours, doing activities that they enjoyed whilst confident their child was having fun with their worker.
43 children looked forward to doing things & going to places they enjoyed with their worker on a regular basis. As a result both children with disabilities & their parent / carers reported that family relationships were improved. Children developed warm and positive relationships with their worker and discovered new activities and places that they liked to go. Through spending time with another adult out side of the family on a regular basis, both children & parents are now more confident to consider being able to ask if their child can be cared for by another adult. Parent / carers have learned how to relax & spend their respite time in a way that works for them – at home, reading a book, having a nap or going out with friends, partner, siblings, to an exercise class, shopping etc. 16 parent/carers learned skills and techniques which they have used outwith sessions & have said they found it helped them to manage their stress and anxieties and recharge their batteries.
Mum was an isolated lone parent with a 5 year old son who had been diagnosed with Autism. Initially she accessed support to give her some respite and to encourage her son to feel more able and confident to spend time with another adult as she was aware that he did not cope well when he was not with her and was concerned about what would happen when he started school. In addition to her son spending 1:1 time with a worker each week Mum received regular phone calls from the team which gave her an opportunity to chat, talk about her worries, and be provided with relevant information and ideas around play activities that she could engage in with her son. Positively she was encouraged to realise she was a carer for her son which in turn allowed her to access support from other agencies and relevant benefits. As her trust in the organisation as whole developed she was encouraged to participate in the "Time for Mum" project. Matched with a volunteer she was able to explore and join local fitness classes. Mum now engages in regular exercise activities at the gym on her own. This also gave mum confidence to join the Parent Carer group, by zoom. She was initially very shy and for the first few sessions had her camera switched off until she felt more confident to be seen. Mum also participated in THE Health and Wellbeing Sessions pilot along with other parent/carers. Mum began to think about retraining with a view to obtaining employment in a different field. She has attended a number of training courses, including digital skills, and other online support groups. Mum mentioned that she had been doing social media posts and was asked if she would like to be involved in volunteering with Firsthand Lothian to help create and post on our social media sites. Mum was keen to be on board and a volunteering role descriptor and agreement was developed for her role. Outcomes were: The 1:1 support for her son has now come to an end and he is now attending the local primary school. Her son is more confident and able to spend time away from mum without getting anxious. Mum is more confident and able to express her views regarding her son’s needs at meetings with the school and other professionals. Volunteering has given mum a sense of purpose and routine. Mum attends team meetings and is connecting with the staff team on a regular basis. Mum comes into the office to plan and write posts on a regular weekly basis. Mum is currently posting her lived experience of being a Carer of a child with ASN. Mum has set up a WhatsApp group to enable those attending the Parent Carer Group to be able to offer support to each other in between meetings and organise in person meetings etc. Mum is getting a sense of purpose and has a focus outwith her caring role. Mum is learning and developing new skills that will create opportunities to move into employment or further education. "I like writing the posts at home when my son is at school. I like having something to focus and concentrate on".