Flexible Family Respite
A story by Firsthand Lothian
We provided a flexible service, delivered in the home & local community. Working 1:1 encouraging children to access/participate in activities & social events.
This in turn provided regular respite for parents/carers as the sessions were between 3 & 4 hours, tailored to maximise the benefit to the whole family.
What Flexible Family Respite did
We delivered regular respite to children with disabilities and their parent/carers and siblings living in Edinburgh. The delivery was targeted to meet the needs of families in need i.e. living in areas of deprivation, had no other services involved, were isolated with no other social or family supports to help etc. We worked with children of all ages and the service was delivered in the family home and their local community.
As a time limited service ( generally 6 - 8 months) we wanted to be sure we achieved sustainable outcomes for both children with disabilities & their parents & siblings. Each family was encouraged to think about their specific needs in particular when the delivery would have maximum impact and benefit for the family eg a day/time when parents could do activity with siblings or do something for themselves.
Most activity took place out of school hours either Friday afternoon, Saturdays & Sundays and usually took place out with the home. Activities depended on each child's interests and included visiting Gorgie City Farm, going to Museums, beach, local parks , soft play, travelling by tram, trampolining and going to places where they met other young people such as The Yard etc. We encouraged activities which were not only fun but that developed confidence, self esteem and social skills and interaction.
Carers were encouraged to do activities that recharged them some choosing to stay home, have a bath and read a book or sleep and others using the time to socialise with friends or partners, go to the gym or for a swim, go to an art or similar class etc. Other parents were keen to spend their time with siblings going swimming, the cinema, football, shopping etc every family was different and we fitted in with them.
We developed in house play training to raise awareness of the range of sensory activities children enjoyed and we developed a library of resources and places to go which was shared and we encouraged staff to keep this up to date by adding in places they had been.
Having fun with children & delivering tailored respite at a time that worked for each family continued to be key to success.
What Firsthand Lothian has learned
We are very aware that provision of other services across the city is patchy with some areas having more access and available services and supports than others. Whilst we have continued to gather and circulate information about other relevant agencies and made parents/carers aware of these we have learned that sometimes the information is not enough and we need to go with or introduce parents and their families to these services and projects directly.
We have found that families who most need it don't always have the confidence to ask for what they need and we need to encourage this and help them feel okay about asking for help. Feedback gathered this year from parents/carers highlighted how it was valued that we acknowledged and understood that it is a hard job being a parent/carer and that having a someone to talk to or ask questions was really valuable .
"The service has offered substantial support to me as a parent. A & B always allowed me any opportunity to have a talk....which seems like a little thing but special needs parents can be very isolated and suffer from mental health too so it means a lot. They were always there to speak to about anything...……"
We became even more aware from talking to parents how fragile their relationship can become and the importance of having time to nurture and take care of it so that they can sustain both their relationship but also their caring role. We noted that couples could talk o each other without really communicating on a personal level. Their interaction could become an exchange of instructions and statements as they focused so much on the task of caring and responding to their child's needs and in the process they got out of the way of asking each other how they were feeling, talking and enjoying each others company, spending time being together and emotionally supporting each other etc.
Given the continued reduction of other services available we would ideally like to develop from 1:1 to groups of 2 who have similar interest but given the size and geography of Edinburgh this will continue to be an issue. However the development of the Parent and Carers Group and Facebook page may present opportunities in the future for families to be able to connect and perhaps look to engage in activities together which we could help facilitate or support.
The funding from Better Breaks has enabled us to continue to develop and adapt our service to meet the needs of families with children with disabilities and attract other funding through Children in Need, Volant and The Gannochy Trust which has helped us be able to support siblings of children with disabilities and those awaiting a diagnosis.
How Firsthand Lothian has benefitted from the funding
The funding from Better Breaks has enabled us to continue to develop and adapt our service to meet the needs of families with children with disabilities and attract other funding through Children in Need, Volant and The Gannochy Trust. Over the past year we have supported a parent/carer to set up a Parent and Carer Group which has been meeting since the summer 2018. Whilst attendance at these meetings in a local coffee shop has been variable (up to 6 parents attending) and the feedback is that they are enjoying having the opportunity to meet new people and share their experiences and it makes them realise they are not alone. The Group have also been facilitated to set up a closed Facebook page which has a much higher level of engagement with parents sharing information about things and places they have discovered that are helpful etc. This has enabled people who cannot make group due to day/date/location to still be connected to other parents. Better Breaks has also allowed us to identify the need for and secure funding to develop a " Time for Mum" project which is specifically for mums who have child care in place but need a bit of support to reconnect to who they used to be and engage in things they used to enjoy/want to do now. This time limited service (up to 12 weeks) supports Mum until she is confident and connected into whatever it was she chose to pursue. This has helped parents use their time away from caring for themselves not only recharging them by doing something they enjoy but also helps them connect with other people, feel less isolated and more connected and have improved physical and mental health through the activity(s) they undertake. Better Breaks has enabled us to target , develop and deliver services to families with children with disabilities who are just below the threshold to receive SDS or statutory input - which are many. These are isolated families who are struggling to cope. Often their children are in mainstream school but finding it really difficult and stressful but we find they respond well to input at the weekend when they are not so tired and doing something they enjoy. This gives them space to develop their confidence, social and communication skills in a relaxed environment which can lead to improvements in other areas of their day to day life during the week. Other services available for local children with disabilities are either long term for children with complex disability or parents need to take their child to a specific group at a set time every week which does not always fit in with or benefit the family as a whole. The project has also enabled us to offer Volunteers and opportunity to gain experience of supporting families and children with disabilities. This has been particularly attractive to University Student who want to go on to work with in the fields of nursing, psychology, speech and language, art therapy, teaching etc and many have gone on to secure full time work in their chosen profession.
Children & young people will have enjoyed spending regular 1:1 time with a worker for around 6 months, doing activities at home and in their local community. They will have enjoyed visiting new places & participating in activities. They will feel more confident, less isolated & have had fun.
This project outcome was fully achieved as children spend 1:1 time with their workers doing a wide range of activities both in the home ( arts, crafts, singing, dancing, playing games and doing puzzles etc ) and, for the majority of the time going out and about with their worker to places they enjoyed and had fun. Some places were more local to home such as the local park or beach but other children were keen to travel by public transport and go further afield and enjoyed spending time at the beach, the museum, bigger & more exciting playparks, Gorgie City Farm etc. Other children were introduced to The Yard as it was felt they would benefit from having the opportunity to mix with other children & make friends. No two children were the same and the success of this project outcome was that we listened to what children & their parents said they liked to do and took our lead from them as to when it was best to deliver the service so that everyone - siblings & parents benefited.
Barbara has a Cerebral Delay, ASD and a visual impairment and she needs gentle guidance and support with her day to day activities/tasks due to her low peripheral vision. Mum and Dad feel a lot of their attention naturally falls on Barbara and as a result her 3 siblings lose out on a lot of valuable time with them. Barbara likes routine and once she has been somewhere she likes, it is difficult to get her to go anywhere new. The family wanted Barbara to get to know another adult and gain more confidence without Mum or Dad around. Mum wanted Barbara to try and explore new places and they also wanted to have the opportunity to spend much needed quality time with their other 3 children. In the beginning the worker who had been matched with Barbara took her to disability specific sessions at a trampoline park. Then the worker encouraged Barbara to use techniques to help her get around more independently e.g. showing Barbara the cone (secret button) that is underneath most traffic lights that spins when it’s safe to cross and encouraging her to use that along with her hearing senses to judge when it is safe to cross the road. Barbara was very excited about this small device and couldn’t wait to show Mum how to use it. As their relationship developed Barbara became a lot more open to try new things and new places to explore. Mum and Dad were very surprised to hear that she was keen to try somewhere new and that the worker had convinced Barbara to go along to the museum with her one week instead of the usual trampoline park. Barbara thoroughly enjoyed the museum and even suggested they went back fortnightly (one week at the Trampoline Park and one week at the Museum). She then began to try different places as well (Dynamic Earth, Children’s Museum, World of Illusions etc.) as long as it was fortnightly so that she could maintain her trampolining. Barbara became much more visibly confident to explore new things independently. For example, at the museum she was happy to play and try out the different activities available without the need for prompting and encouragement from the worker. Every week she came up with new ideas of places to go and things that she and the worker could do the next week. The worker also made Mum aware of activities happening around Edinburgh that she thought might be of interest to Barbara, including activities aimed at teenagers on the Autistic Spectrum, events & exhibitions on at the museum etc. Mum and Dad enjoyed and appreciated having regular respite time which enabled them to spend quality time with their other children. Barbara described her sessions as “awesome” and “so much fun”. She even told the worker “You’re an angel!” Mum fed back “Barbara always looks forward to the session throughout the week.” Mum also said she sees less “meltdowns” from Barbara as a result of her spending time out and about with her worker.
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 is having fun with a worker.
For parents and carers of children with disabilities the positive relationship their child developed with their workers was really important and key to them being confident that their child was having fun and doing something they enjoyed with someone who genuinely cared for them and their well-being. This enabled parents and carers to look forward to their respite too and not feel guilty as they know their child wants time apart from them also. Some parents and carers chose to spend the time with siblings and go out to places they wanted to go and have fun with them, eg swimming or the cinema. Others simply wanted to switch off completely and have uninterrupted sleep or go for a coffee, read a book ans everyone had their own way to recharge their batteries. By being able to spend regular time apart (without feeling guilty) parents were able to meet friends, spend time together as a couple knowing that when they returned home both they and their child had benefited.
Mum is lone parent with 2 young children, Celia and Derek, who receives little support from her family. Derek is 3 ½ yrs old and he has periventricular leukomalacia (brain injury), chronic lung disease with a weak immune system and developmental delay. Derek’s understanding & communication is poor. Derek was born prematurely at 25 weeks. Derek has a delay in his learning, currently responding to tasks at level of 12-18 months. Whilst Derek has mobility, it is for short distances as his calf muscles will tighten and he will fall a lot. When Derek is upset or frustrated he will often bite furniture, he previously went through the stage of biting other people and will hit/lash out and throw objects. Derek tends to play alongside his peers rather than engage and at times he does not tolerate them. Celia is 10 months old and her needs are age/stage appropriate. Mum struggles at times to spend quality time with Celia due to the demands of Derek. Mum was sign-posted to Firsthand Lothian through VOCAL asking for 1:1 support to be provided for Derek to allow Mum some time with her youngest child and allow her a break. The worker engaged in stimulating experiences and activities e.g. outings to parks, bus trips etc. with Derek. He particularly enjoyed sensory activity e.g. exploring different textures/smells like shaving foam, jelly, water and the worker fed back to Mum about the sessions e.g. how he engaged, the type of play and Derek’s response to encourage Mum to continue these activities with him. Mum developed a positive relationship with her worker and felt comfortable to talk openly to her. The worker provided information for mum about services for herself and her family and encouraged her to access local groups & disability specific services to create strong support networks for herself as VOCAL and introduced her to The Yard with a view to being able to both meet Derek’s needs and provide opportunities for mum to develop social networks and meet with other parents in similar position. Mum enjoyed spending 1:1 positive and focused time with her youngest child Celia. Mum said, “Kay’s been great and Derek adores her… as soon as she gets here, Derek will run to grab his shoes & coat and grab her hand to walk her back to the door.” “She does lots with him, especially sensory & messy play which he loves.”
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 is having fun with a worker.
This outcome was fully achieved as our delivery focussed not only on how we would spend our time with each child with disability but also on how we could maximise the benefits of regular respite to parents/carers. We asked parents to think about how they would want to spend their time for some it was just having uninterrupted switch off time alone, having a bath, going for a coffee, sleeping for a few hours. For others the opportunity to do something more social such as spending time as a couple, meeting friends for coffee, going to the gym or a class, going shopping, everyone was encouraged to think about what would work best for them as an individual. The benefit of our approach was that the sessions usually involved going out with their child so parent/carers could spend time just chilling out at home if that is what they wanted to do. A number of parents enjoyed spending 1:1 time with siblings e.g swimming lessons etc and felt their whole family benefited from respite.
The Smith family comprises Mum and Dad and their 2 daughters Linda (7 years old) and Ruby (10 years old). Ruby is has autism and a learning disability, is non-verbal and can become quite aggressive with her parents and her sister if frustrated or bored. Mum and dad receive no additional support for Ruby. Mum and Dad asked for support to allow them to spend some time together as they were both really struggling in their parent/carer roles, were tired, frustrated and only communicating with each other on a practical level, making statements about what needed to be done or had happened etc. They had over time stopped talking to each other on an emotional level or even taking the time to ask each other how their day had been or how they were feeling. The parents recognised their relationship was in danger of collapse and felt that having someone care for their disabled child and her sibling would enable them some time to reconnect with each other away from the children. The worker was introduced to the Mum, Linda and Ruby at the family home as Dad was away with work. They discussed the routine and plans for the sessions and as the respite was primarily aimed at providing mum and dad with some respite together they required the worker to visit in the evening to allow for work commitments and so on. It was agreed that the worker would spend time with Ruby and Linda, having fun and doing things they enjoyed before bed time. At the initial session the worker shadowed mum and dad to learn their routine. The following week, mum and dad went out and the worker spent time with the girls and followed their bedtime routines and all went well. These sessions have continued weekly for 3 hours. Every session starts with play time before the bed time routine must begin. During the play time, Linda enjoys role play (such as Teddy Bears Picnic, Toy Birthday Parties and so on). Ruby enjoys just spending time with the worker and is particularly keen on sitting near her and having foot rubs, hand rubs etc. Mum and Dad feel they really benefit if the sessions take place on a Friday night as there is something to look forward to together. As the girls can sometimes be quite tired at the end of a busy week, they will, with parental permission, sit together to watch a film. The bed time routine is quite simple, with the girls heading to bed shortly after Ruby has been given melatonin. The worker spends time settling the girls before mum and dad return. Firsthand Lothian introduced a 2nd worker to enable for each girl to get 1:1 input. Ruby really enjoyed this, as she could have sensory sessions with her worker whilst Linda was doing things with the other worker. Ruby would choose which worker she wanted to spend time with at the start of the session. She enjoyed foot rubs, and particularly enjoyed using clean paint brushes to stroke her feet, hands and head. She also enjoyed some books. Linda used the time to play role play and do crafts. Linda also enjoyed the introduction of a Bed Time To-Do List, which helped her stay in control of bed time, whilst following the general rules and requirements. Sessions moved to fortnightly for the last few months to allow the girls to adapt to change and prepare for the service to end. Linda and Ruby had enjoyed their time and Ruby in particular, had become more interactive and engaged in fun activities with her sister and the worker. The sessions had allowed mum and dad time to spend quality together, and they regularly reported how much of a positive impact this had had on their relationship. Looking back they realised how dangerously close they came to splitting up and how much better they both feel now about their relationship as they are taking time to spend time together, are more able to relate to each other and work as a team. Whilst the service has ended Mum and Dad have introduced a DVD and Popcorn night once a week for themselves where they are intentional about spending chill time together at home once they have the girls in bed and asleep.
Regular respite will enable parents/carers to have time to recharge & do something for themselves. They will feel less isolated & more connected to their local community, feel more confident in their role &more informed about who & how to ask for help, SDS & opportunities to meet other parents.
This project outcome was fully achieved as not only did we encourage parents /carers to think about how best to use their respite we were also were proactive at both providing information and supporting parents to access other supports and networks including VOCAL, Kindred, LAS, Tailor Ed, The Yard, Sleep Scotland etc. We also made parent/carers aware of SDS and how to apply to for this etc We supported parents to set up a Parent and Carers group which meet socially and share knowledge and their own experiences of services and places to go etc which has been positively received. This has helped many parents feel a lot less isolated and for those who cannot make the meeting they can connect with other parents through the Closed Facebook Page which has been well received and has helped parents feel less isolated.
Mum is a lone parent with 2 children Josh who is 14 years old and a diagnosis of autism, Hyperacusis and social anxiety, and his younger brother Mark who is 8 years old and currently being assessed for ADHD. Mum has had her own health concerns within the past year and particularly wanted to spend some 1:1 time with Mark. The sessions were arranged to enable this to happen with the worker spending time at home with Josh whilst Mum used her respite to take Mark out to the cinema, for lunch and shopping and generally spending quality time together and having fun. Mum was worried that Josh was becoming more and more isolated and that he would benefit from learning to engage with another adult/person. The worker encouraged Josh to talk about his interests, school (he was only able to manage to attend for 2 hours a day) and his concerns or worries. The informal basis of the sessions meant that Josh felt comfortable talking without fear of probing or upsetting questions. They developed a way that Josh could discuss his fears and anxieties and through time he was able to speak more openly, particularly about negative experiences (mostly related to his time at primary school). Josh’s conversational skills improved and he is much more likely to initiate conversations. Mum reported positive feedback from school which had noted an improvement in Josh’s confidence and conversational skills with peers. Mum and Josh both feel he has grown in confidence and he is communicating more and interacting and talking more with his brother and mum on a regular basis. Mum feels that Mark now realises that his older brother is not just attention seeking but that he needs more support and so that has eased their relationship. Mum fed back that having observed how the worker engaged with Josh, giving him space and time to respond, and that she had adopted the same approach with significant results. Mum now makes time on a regular basis to spend 1:1 time with Josh, watching comedy show he enjoys and they have a giggle and laugh together. Mum has also joined the Parent and Carer Facebook Group which she has found supportive and a good place to connect with other mums and share information about herself and her family subsequently attend meetings over coffee with other mums which has made her feel less lonely and isolated and has presented opportunities to share and exchange experiences of life.
Additional project outcome
Siblings of children with disabilities will have regular time to do spend doing something they enjoy with parent/carers. This enable us, where appropriate, to spend time with all children and therefore give the parent carer 100% respite.
Dad lives with his 4 children on his own in the North East of Edinburgh where the family live in financial deprivation. Dad suffers with mental health issues, low moods, lacks confidence and suffers from stress & anxiety. Abigail is 5 yrs old and has delayed speech & language, hearing loss and visual impairment. Her behaviour can be challenging and she commands 1:1 attention and lashes out at her siblings. Anna is 7 yrs and is bright, confident and socially engaging and tends to take on some of the caring duties of her siblings and will act older than her years. Alana is 3 yrs old and comes across as quite shy and reserved. Abbey is 2 yrs old and has delayed speech and has a low immune system, suffering from chesty cough/colds regularly. The girls are a bundle of fun, lively and energetic. They enjoy arts & crafts, dress-up, reading books. They love being outdoors but Dad finds it difficult to manage this on his own. Firsthand Lothian introduced 2 workers to the family with the view to allowing Dad some time for himself to have some respite and to keep up with some practical tasks. The focus of our work was to support both Abigail and provide positive interaction as well as spending time with her 3 siblings so that the whole family would benefit. The workers focused on activities which were stimulating and took place out with the family home. They went to the beach, local parks, woodland walks, for picnics, botanic gardens, the museum etc and focused on having fun together. In addition the workers provided guidance to Dad regarding play activities and experiences to engage and stimulate the girls in between the sessions. Focusing on Abigail’s needs the worker introduced sign as a form of communication which proved beneficial and when Dad expressed an interest in learning this the worker provided Dad with print-outs of basic sign commands for him to use and as a result Dad said he feels his own relationship with Abigail has improved significantly both in terms of understanding her needs but also that they now spend quality time together. Dad was encouraged and supported to access local groups so that he could create strong support networks for himself. i.e. parenting classes, access to leisure activities etc. with a view to him meeting new people and working on his own confidence and self-esteem. In addition he was helped to establish and maintain routines and boundaries for the girls and parenting approaches to help Abigail specifically and help Abbey develop her speech and language. Towards the end of the service Dad asked if he could engage in a couple of the sessions with the workers and the girls to get some ideas for play and to just share in the fun/chat from the support workers. As Dad became more confident in himself his relationship with and parenting of the girls improved too. Dad and the girls developed a good positive & fun relationship with the family support workers and he said he feels he benefited from the service in having his own head-space as well and doing practical tasks around the home. Dad said: “I think they’re brilliant! I love how they come down to the girls’ level to talk, make eye contact, speak clearly and have great ideas.” “The girls love them and going out. They know the day they are coming and get really excited.” “I’m really impressed with how they have connected with Abigail, signing to communicate which no one has ever done that before and its great that they have taken the time to teach me.”