Flexible Family Respite
A story by Firsthand Lothian
We delivered flexible respite at a time which enabled all family members to enjoy their break, we spent 3-4 hours with the child/ren with disabilities (weekly) both in the family home and local community – encouraging them to access and participate in fun activities, try new things, visit new places of interest.
What Flexible Family Respite did
Working across Edinburgh our project supported families with child/ren with disabilities who were not in receipt of statutory support and where their child was in mainstream education but really struggling. We worked with children up to 16yeas including young children who had only recently been diagnosed to young teenagers who wanted to be more independent of their family. The support was provided for 6 - 9 months and as a result of the pandemic it was delivered both on line using FB Portals or other platforms such as Zoom etc when we were unable to meet up in person due to restrictions or poor weather. .
Our project delivered regular weekly 1: 1 sessions with children with disability, usually out of the home. Child led, we went to places and did activities children told us they enjoyed. We tailored the service delivery in terms of day and time to maximise our impact so that the whole family benefitted - parent/carers and siblings. Sessions mainly took place weekly on Friday afternoons & over the weekend - the day/time agreed to try and ensure the whole family benefitted.
Activities undertaken with children during the 1:1 sessions (particularly when restrictions were in place) included going to local parks, woodland walks etc. When restrictions were eased we were able to go further afield eg. museums, the beach, Love Farm, picnics etc
The 1:1 relationship which developed between the worker & the child helped children to have more confidence, improved social skills, communication, feel more independent as well as being active, learning new things, going to new places and having fun on a regular weekly basis.
In addition to the benefits for the child/ren the relationship between worker and lone parent/carers in particular was identified as being really important, particularly over the initial lockdown when people were scared, anxious and feeling very isolated and valued having another adult to talk to about their worries. We agreed with some parents to give them a call in the evening so that they could talk through their stresses and we could help them plan activities and approaches they could take the next day.
What Firsthand Lothian has learned
Over the past year we have learned that we are very flexible and adaptable and were pleased at how quickly we were able to change our delivery in response to the pandemic and the initial lockdown, prioritising families and children who were most in need of reassurance and regular input.
We were creative in out approach to maintaining contact with children and families , using What's App, Zoom, Face Time, Google etc initially and securing Scottish Government funding very early on in Lockdown that enabled us to purchase and distribute FB Portals to families and staff. The Portals enabled children and workers to move about the room and still be seen ( the portals have wide angled lens and zoom in and out, "following" participants around the room). This opened up opportunities to do more physical activities and games such as scavenger hunt, dancing, singing, arts and crafts, yoga, etc together.
We developed and delivered on line group sessions for children and siblings to come together once a week. Child led, these were well received and we were delighted to create the opportunity for children from across the city to meet others and make friends as this was something we had never managed to do before as children had wanted to spend 1:1 time with their worker and were not interested in travelling to a central location to meet other children. On line group sessions is definitely something we would like to continue to develop and deliver going forward.
However whilst the online delivery worked well for many children we have learned that it was not always suitable for very young children or those who did not understand how their worker could not be with them physically and how remote worked eg "how is my worker inside a phone ?".
We have learned that the pandemic has had a significant impact on both child and adult mental health with many more children with disabilities experiencing high levels of anxiety and depression in addition to their disability. More parents are also seeking help and support - particularly those with no or few family, friends or networks of their own as many are struggling with low mood and high anxiety levels.
Positively, attendance and engagement of the Parent and Carer Group has been higher over the past year with parent /carers feeling more connected and supported by peers who also have children with disability and who understand how difficult things can be day to day .
Having a place they can share experience, knowledge and information with others in a similar situation as well has having social chat and a laugh has increased engagement . As travel time and cost has been a barrier to attending in person we are keen to see if we can continue to make this available on line as well as supporting and encouraging those who can attend in person in the future.
Virtual introductions of workers to children and families was more challenging and we learned that it was improved by getting workers to provide an info sheet/ social story to include a photo of themselves, what they like to do etc which was shared with the child and family prior to the introduction sessions. We also encouraged children to do something similar to share with their worker and /or think about what questions they might have for the worker at the introduction meeting so that it gave a bit of structure and encouraged conversation. Prior to the online meetings we emphasized to children that they could say when they wanted to leave the meeting so that they knew they had a level of control of the virtual meeting. This worked well and this is something we want to continue to do.
Over the last year we have engaged with families via the introduction of an interactive Monthly Newsletter which provides both information for families and parents as well as fun activities. This is circulated to families and made available on our Facebook Page and Webpage.
We have also used our Facebook page more to engage with both families we are currently supporting, have supported before and who are not in receipt of a service from us. We are posting activities, video clips from staff and volunteers and have developed posts that we deliver every day so that children could be entertained everyday during the week when they were not a school. Our Facebook page can now attract over 225 likes per post.
We are also very aware that despite the introduction of the Carers Act many parents do not see themselves as Carers and do not know their rights. We delivered a session to Parents and Carers on line which was attended both by parent / carers we currently/ previously supported, as well as parent carers who had been made aware of the session through our promotion of it to other local services and projects who worked with parent/ carers of children with disabilities.
How Firsthand Lothian has benefitted from the funding
Time 4 Mum is a new service we have been developing in recognition that many parents did not seem to consider doing something for themselves when offered regular respite. Many had lost sight of themselves as a person and only focused on being a parent / carer. Time 4 Mum trains and supports volunteers and matches them with parents who are isolated, low in confidence, experience low mood, anxiety etc and through developing a 1:1 relationship encourage them to thing about and explore activities they used to enjoy before becoming a parent / carer and/or explore new activities / interests available in their local area. Time 4 Mum really benefitted from virtual /portal delivery over the past year of the Pandemic with Mums and Volunteers doing a range of activities together from their own homes including cooking, baking, sewing, arts and crafts as well as attending virtual groups together including Zumba, yoga, mindfulness, tapestry etc Whilst it has been more challenging to connect participants with physical in person groups in their community, the connections made and improved confidence that Mums have achieved would indicate that once in person meetings resume they would be more inclined to attend and increase their social circle and engage in an activity they enjoy on a regular basis. Using the knowledge and experience we have gained from developing and delivering our Better Breaks project we were able to apply for funding to support children and young people who are struggling as a result of the impact the Pandemic on on their mental health and well being. We recently secured some funding to enable us to support up to 20 children and young people across the city over the coming year .who are struggling with high levels of anxiety or depression. Based on the success of our Better Breaks delivery model and demand we propose to deliver this at weekends as well and develop on line group sessions which will focus on ways of managing emotions and feelings.
45 children & young people with disabilities with have spent quality 1:1 time with a worker on a regular weekly basis for 6 months doing activities they enjoy both in the family home and out with the home. They will have had fun with their worker, visited new places and be more confident.
Whilst this outcome was achieved in terms of the activity taking place, restrictions limiting face to face delivery, indoor delivery and travel meant that we did not reach as many children as anticipated. When restrictions were eased during the summer months children spent time with their worker visiting the museum, parks, beaches etc . We were keen to encourage outside activity such as picnics, playing games outside, doing arts and crafts outside etc and we were mindful of limiting travel on public transport. On line activities worked well for many children eg scavenger hunts, singing, dancing, talent shows, arts and crafts, yoga , mindfulness and playing games with their worker. The online group sessions we developed and delivered to groups of 6 children from across the city enabled children with disabilities to meet others with similar interests and created social opportunities to make friends and engage in fun activities as part of a group on a weekly basis
Mum lives at home with her 2 children - Charlie is aged 4 and Paula, 8 . Both children struggle with social emotional anxiety and Mum struggles to manage their behaviour. Paula struggles to manage her behaviour at school and is often in trouble with Mum regularly receiving phone calls to collect her early. CAHMS are involved when we met the family where were going through a process of assessment to diagnose the reasons for Paula's behaviour and difficulties.. Mum works 2 part time jobs to support the family and applied for support to get some much needed respite and to spend some 1:1 time with Charlie. A worker was matched with Paula with the plan being to take her out of the family home to do activities that she would enjoy. Paula was very excited about starting during the home visit and chatted away to the worker. Unfortunately due to Covid19 the 1st session was postponed. During the initial Lockdown Firsthand Lothian provided phone support for Mum which she used to talk to an adult about the problems the family were facing. At the start of the lockdown she needed financial support as she was not able to work because the children were not at school. The family was referred to a service that delivered emergency packs to and the children secured a place at a hub so that Mum could start going back to work. Mum benefitted from the opportunity to offload about the children’s behaviour and how she was struggling to manage it, with the worker offering suggestions as to different approaches, encouragement and reassurance. Firsthand Lothian had secured funding to provide families with FB Portals and one was delivered to the worker and the family so that on line sessions could commence with Paula. This worked well for Paula and gave mum a bit of break as Paula engaged in fun activities and games with her worker over the portal. In addition Firsthand Lothian developed a new online group delivered by 2 Family Support Workers. Paula joined the 1st group of 5 children aged from 8 to 12, first coming up with the name for the group – "The Sheepy Sheeps" – and engaging in child led activities like Scavenger hunts, yoga, Try Not to Laugh challenges, Arts & Crafts and much more. Paula joined in with all activities and when she gave feedback at the end she said she liked it and really liked the “jumping” and “screaming”. There had been initial concerns as to whether the group approach would work for Paula because she struggled to stay focused on one thing for long periods of time. However the workers could see that the on line group sessions worked well for Paula because she was able to engage when she could but still disappear to the back of the camera to move around/make noise when she needed to - without disturbing the other children. Even when Paula did this she always came back when it was her turn to engage with an activity! The Online group benefitted Paula - giving her a chance to meet other children her age, take part in new activities, learn about and get used to turn taking with other children and having fun with other children.
55 parents / carers of children with disabilities will have received up to 75 hours of regular respite ( usually weekly) which they will have spent doing something they enjoy whilst confident their child/ren is having fun with a worker
45 Parents and Carers received respite over the year, which was fewer than anticipated due to restrictions due to the Pandemic.. We offered online support when restrictions were tight - providing families who needed equipment with FB Portals. The Portals allowed us to engage in activities with the child in the home and parent/carers fed back that they could hear their child laughing and giggling in another room when sessions were delivered and they were confident that their children were having fun. Restrictions limited how parent/carers could spend their respite but sessions delivered allowed them to have some time to switch off and relax , albeit at home, doing their nails, reading a book, having a nap,. During the summer months when children & parent / carers could spend time out of the house they were able to spend time as a couple, with siblings, doing exercise, meeting friends etc whilst knowing that their child looked forward to spending time with their worker.
Family B consists of Mum and her 3 children. The 2 youngest boys have been diagnosed with Autism and a Learning Disability. N is 12 years old and really struggles with her mental health with extreme levels anxiety, very limited social skills and limited experience to engage in activity out with the family home as Mum has been so occupied by the needs of the boys. Mum has poor Mental Health and no family living in the UK that she can turn to for support. Living in an area on the edge of the city which has a very limited bus service, she does not leave home often and spends all of her time caring for the boys who are very demanding of her time day and night. The family were also experiencing serious harassment by their neighbour which has subsequently resulted in a court case at which Mum and N are due to give evidence. Support for Child It was agreed that sessions would focus on N getting out of the house and developing her social and life skills, with the aim of being increasing independence. At the first outing with the worker N was encouraged to say what she felt were her most important goals. She identified three goals – using public transport with confidence, being able to go shopping without support and being able to cook a meal. They agreed to focus first on the public transport goal, as this would assist N in accessing the shops. They also agreed that when they started the shopping goal, they would combine it with the cooking goal – i.e. N would go to the shops to get ingredients to then make at home. The worker slowly introduced N to public transport. To begin with the worker did all the tasks required e.g. organising the fare, what bus to get, bus times etc. and then slowly allocated tasks to N so that she could learn how to work out what bus number, the timetable, how much money she would need for the fare, ask for her ticket by herself etc. C19 and lockdown meant the face to face sessions could not continue and on line delivery commenced Support for Mum A supportive relationship between Mum and the worker and Family Support Co-ordinator developed as Mum was isolated and needed someone to talk through her concerns, anxieties and feelings. The Co-ordinator and worker were able to support Mum with some practical issues e.g. getting the landlord to carry out repairs to a leaking shower etc. things which were overwhelming her because she was so stressed trying to cope on her own with being a parent /carer. The worker encouraged Mum to meet with other Mums through the Parent and Carer Group that had moved to meeting on line. Mum was supported to attend this group for the first few sessions with a worker attending too for reassurance and after the first few sessions Mum advised that she really found it really beneficial to meet other Mums and for the first time in a long time “ have a bit of a laugh” with other parent/carers. Virtual sessions with N commenced, initially via WhatsApp video calls on Mum’s phone for a few weeks until Firsthand Lothian were able to arrange for the family to have a Facebook Portal. Portal sessions worked so much better and gave the option of meeting on the Portal or Zoom during restrictions. Portal sessions started with arts and crafts, storytelling and time to talk. The worker introduced some yoga and meditation with N, which subsequently led to Mum joining in these sessions too which helped the bond between mother and daughter as well as helping them both learn how to relax. As restrictions eased in-person sessions were restarted although they needed to remain in the in the local area – going for walks to nearby parks and ponds , using their time to discuss particular things that N found challenging. There were still times that sessions had to return to virtual delivery via the Portal e.g. family member self-isolating, poor weather – and N and the worker engaged in quizzes, playing hangman, doing creative tasks together as well as talking about N’s feelings and worries and suggesting ways of managing these stresses. Impact N’s weekly support continued to be a blend of online & in-person sessions focusing on N’s mental health, confidence building and life skills. N demonstrates more confidence, her social interaction has improved and she is more able to manage her stress and anxieties Mum continues to receive weekly telephone & video calls from the Family Support Worker and Coordinator. She regularly engages in the Parent/Carer Support Group, which is held online, enabling her to chat with other parents/carers and support one another. The relationship and bond between Mum and N has improved and they are more understanding of each other’s needs. Feedback from mum included “D is very kind and we really appreciate Firsthand’s support so much. You have really helped us all and I don’t know where we’d be without you.” "The parent group is very useful to me. It has helped me to understand that I am not the only one having a hard time. It is helping me to access information and resources. It is helping in developing my parenting skills. Meeting other parents who understand the challenges that I am dealing with and talking to them. I always look forward to the parent group because I feel belonged and its also helping with my mental wellbeing. Thanks for all your support. Very much appreciated.”
55 Parent/Carers will feel, more reassured, less isolated, more connected to their local community, feel more confident in their role, know what they are entitled to and how and who to ask for help when they need it. More aware of activities and places they can go with their child/ren
Whilst we did not support as many parent / carers as we hoped ( 45 ) the support and relationship parent / carers developed with their worker and the Family Support Co-ordinator was invaluable. We were flexible and adaptable - where requested phoning parents at the end of the day to give them space to offload and to help them plan activities for the next day; develop strategies to try with their child when things got difficult; signposting them to community resources and local supports available during the initial Lockdown etc. We encouraged people to come to the online Parent & Carer Group meetings and join our closed Parent and Carer Facebook group. Having space to share experiences, sharing information and having social contact helped to reduce feelings of isolation and loneliness. We delivered a session to parent/carers about the Carers Act so that they were aware of their rights . We encouraged parents connect with others through accessing our Time 4 Mum project.
Family Make Up The IB family consists of mum and her two children – A is 9 years old and Y is 4 years old. Mum experienced domestic abuse which led to her fleeing from her children’s father who was subsequently arrested & charged by the Police. The children witnessed this abuse. Y has ASD and he is non-verbal. He is very demanding of his mum’s attention and will scream to communicate his needs. A is a sensitive boy and finds it difficult to engage with others. A referral was made on behalf of the family from Edinburgh’s Women’s Aid where they identified that Y required more specific disability support and would allow for mum and A to have some quality time together. It was agreed that the worker matched would provide Y weekly sessions on a Friday afternoon which Mum identified as being the best time to allow her & A to have time for themselves. A always wanted to have his mum take him to his swimming lessons but it was always so difficult to do this due to Y’s needs. Sessions would focus on Y building his relationship with another adult and to engage in outdoor activities together to support is social & communication skills. Y has boundless amounts of energy and loves being outdoors. Y and his worker have gone on long walks together, stopping to feed the ducks and have a play at the local park. When face-to-face sessions had to be halted the worker tried to engage in telephone & video chat with Y but it wasn’t possible as Y found it difficult. The worker offered mum support instead by way of regular weekly telephone chats to check-in on mum’s mental health & wellbeing as well as offering parenting support & strategies as Y was finding lockdown really difficult and his behaviour was becoming increasingly challenging. Both the Coordinator & worker explored a range of ways in which to help support Y’s behaviour with sensory play & calming down techniques & activities. Mum raised concerns regarding her other son A. She felt he was becoming increasingly anxious & upset. She mentioned that when the doorbell rang A would jump out his skin or run to mum and he was constantly looking for reassurance that nothing was going to happen to them. Mum also felt that A was missing out on having his own fun as Y is constantly demanding her attention and always taking things from A. The Coordinator agreed to support A by introducing him to a Family Support Volunteer, Alex, as it was felt that A would benefit from building having a positive male role model. Sessions were arranged weekly on a Friday afternoon (same time as the other support worker was in place for Y) which allowed Mum to have some quality time for herself to allow her to relax and focus on her own wellbeing. A & Alex initially met for in-person sessions and enjoyed going to parks, bike rides together. Alex also focused on support A’s mental health/anxiety by way of emotion talks. He encouraged A to join in FHL Saturday Group which was meeting weekly via online Portal sessions and this enabled A to mix with other children of similar age/interests. Mum fedback "A loves his sessions with Alex , learning new things and they have fun together" Outcome Y has settled back well with his worker as in-person sessions resumed and she continued to build on his learning & development. A has now engaged in a youth group and has returned to school full-time. Mum continued to receive weekly check-in support from the worker for her mental health & wellbeing. Mum is now looking to take-up driving lessons. Mum is attending college to improve on her English. Quote from Mum “Y loves M (worker), he gets very excited to see her. She is just lovely, smiley, welcoming, accepting, always happy.” “Contact & communication from both workers is good, they message me before each session to confirm and what the plans are.”
At least 35 families will have benefitted from regular input which has improved the wellbeing of both the child/young person and the parent / carer
We supported 33 Families, just short of our target for the year. Carefully matching children with disabilities to workers ensured warm and positive relationship developed and they spent time doing activities that they enjoyed and looked forward to each week. Having the 1:1 time boosted their confidence, reduced anxieties and for children attending the online groups, it helped them make friends. Regular respite enabled parent/carer to have time to themselves to look forward to and enabled them to doing something for themselves which improved their mental health and wellbeing through being able to switch off and recharge. Being able to engage with others people through engaging in activities that relaxed them such as arts & crafts, exercise classes reduced stress levels and presented opportunity to meet other people. The worker was able to share information about activities and other supports available locally that would benefit the parents & the family as a whole.
Mum and Dad have 2 boys, Callum (5) and Colin (3). Callum has high functioning ASD. Colin is currently under assessment for ASD and is non-verbal. Both children love outdoor play but both have a habit of running off so Mum struggled to get out with them. Mum asked for support with the youngest, Colin as he gets a lot of Mums attention, leaving Callum on his own a lot of the time. After speaking to Mum about her own health issues and lack of time to herself it was agreed that she would benefit if 2 people were matched with the family so that Mum could have total respite. It was very clear that the boys had a lot of energy so sessions focused on taking them to places they enjoyed including the Museum and Park. Colin struggled with waiting for his turn etc. but responded well to being cuddled so the worker would sit on the floor with him cuddling him while reminding him to wait. Both boys would get extremely upset when it was time to leave wherever they were for the session. Colin would scream, cry and fight with the worker and did not calm down until he was in the buggy with a snack. Colin struggled to understand waiting his turn to do activities and would often push other children and scream to skip queues. The worker would have to stay close to Colin and sit with him, softly cuddling him and tell him “waiting” when doing activities he has to queue for, otherwise he would just barge to the front. However over time he began to understand better and would sometimes sit on the workers knee for a cuddle while he waited. Callum struggled a lot more with transitions and different techniques such as Now and Next cards with pictures were introduced throughout the sessions and timed warnings before it was time to leave and firm boundaries helped him. Callum struggles to understand that he needs to share toys/activities with other children when out and about. Mum said that the school has stopped teaching him to share but she wants him to learn and practice sharing as she thinks it’s important so the workers made an effort to remind Callum to share during sessions. Impact The workers noticed a behaviour change in the boys. Callum responded a lot better to transitions and responded to firm boundaries. Colin needed more patience and distractions (i.e. Snacks). The boys got close to the workers and were both ready at the door and excited to go out as soon as the workers arrived. Mum says they both look forward to the session all week with Callum asking in the mornings “is the today the day my friends will come?” Covid_19 meant face to face contact was suspended again. Support was provided over the phone giving Mum someone to talk to about her worries and the challenges for the family which were exacerbated by having had a new baby and having to stay indoors. Video calling the boys was considered but it was agreed that the boys don’t engage with calls so this might be more stressful. In addition to phone support for Mum the worker sent out a range of resource and activity packs for the boys. When Dad moved out Callum struggled to understand what was happening and the worker made up a social story for Mum to read with the boys to try and help them to understand a bit better. When face to face sessions could resume again Mum suggested that she thought 1:1 sessions focused on Colin would be beneficial as she felt everything tended to revolve around what Callum wanted or needed. She was also concerned that Colin had become very attached to her and he now really struggled to be away from Mum. At the first resumed session Colin was upset so Mum came to the park with him and his worker. Once Colin relaxed and was playing and giggling with the worker, she slipped away. At the next session Colin came straight out of the house and took the worker’s hand to go to the park. They then did this every week, playing together and going for walks around the park looking for squirrels and other wildlife. Outcome & Benefits Mum valued being able to have regular and uninterrupted time to spend 1:1 time with and bond with her new born baby. Mum valued had another adult to talk to, particularly when Dad moved out, with whom she could share her concerns and worries Mum said she feels supported and feels she is in a much better place now. Mum is now receiving support from FHL’s Time For Mum project where she has been introduced to a Volunteer and engaging in weekly support – telephone & in-person sessions The boys have settled back at school & nursery and are adjusting back to their routine.