Flexible Family Respite
A story by Firsthand Lothian
We provided a flexible respite service tailored to meet the individual needs of each child and their family. Weekly 1:1 sessions, delivered both in the family home and out in the local community, were arranged and provided at a time which benefited the whole family.
What Flexible Family Respite did
We delivered 1:1 regular respite to families who had a child with disabilities across Edinburgh. Each family received support and input at a time and on a day which ideally maximised the impact and benefit.
Most of the delivery took place on Friday afternoons, Saturdays and Sundays and whilst we usually met and returned the children to their family home, the 1:1 activities usually took place out with the home, going places and doing things which the individual child enjoyed including playing at local parks, visiting places of interest e.g. museums, having a picnic at the beach, travelling by tram or bus to the city centre or the airport, going to places where they would meet other children and young people e.g. The Yard –activities that ensured that each child had fun, enjoyed and looked forward to their time.
Meanwhile the family spent their respite time doing things that recharged their batteries which included parents spending time with siblings, going places and doing things they enjoyed. Whilst, once established, the delivery was usually at the same time /day each week there was flexibility so that if the family needed to adjust the timing or change the day to enable them to do something specific they could make this arrangement directly with their worker who would try to accommodate them.
In addition to encouraging families to think about how they could maximise the benefit of their respite, key to the success of the project was the recruitment of staff and volunteers who were fun to be with and who could establish a positive and trusting relationship with both the child with disability and their parents. Also important was the matching process – taking time to make a good match taking into account personalities and interests of both worker/volunteer and child/parent.
Being aware we were a time limited service we were proactive about sharing information with families about what other resources, activities and places they could go with their child and what their child enjoyed with a view to them being able to continue activity once the service ended .
What Firsthand Lothian has learned
We have learned that key to success and impact is to see each family unit and the individual’s within it as unique and that the service design and delivery needs to be tailored to meet these needs. It is now very clear that the demand for respite and when it will make the most difference is out of school hours usually Friday afternoon and Saturday and Sundays, when children are not stressed or tired from school. Also there are many more opportunities to do things and go places at the weekend than there are on a weekday evening.
Demand continues to be really high with families who we would have expected to be in receipt of some level of statutory input not having anything in place. We have noted that there are definitely areas within the city where there are less amenities, facilities and places to visit locally than others and this is a real challenge both for us in terms of delivering the service but also in being able to signpost families on when we end.
Over the course of the project we were aware of a rise in the numbers of younger children with diagnosed disabilities. Whilst initially we may have made parents aware of and encouraged them to access groups which specialise in play sessions for younger children with disabilities, we now realise from feedback and experience that for many parents this is not a appropriate.
We have learned from feedback from parents that have attended city centre play sessions that they are daunted by group sessions and activities, finding them intimidating and unsettling. On reflection it is perhaps too soon for them they are not ready to take their children to these groups as they have not fully come to terms with what the diagnosis means for them, their child and the future and are not ready to fully engage with disability services.
Other learning from the project is the number of parents who wanted to spend their respite time with their other non disabled siblings. Potentially this was more notable given the higher number of lone parent families compared to 2 parent families where spending time as a couple was an activity.
We still struggle to think of how we could sensitively connect parents, deliver a service families where children have a common interest but the practicalities being able to align the location, day, time, age and stage of the children and their interests continues to be a challenge we have not yet overcome.
Disabled children and young people will have explored opportunities to take part in activities on a regular basis that they enjoy. Disabled children and young people will have participated in activity with their worker which they enjoyed.
This target was fully achieved, we engaged 1:1 with 45 children with disabilities across the city. Meeting them initially in the family home we explored what it was they enjoyed and how they wanted to spend their 1:1 time with their worker/volunteer and if there were any specific areas that we should be focusing on within this, for example, confidence building, travelling on public transport, engaging with others, managing anxiety etc. Each child was different and wanted to do different things although mostly outdoor activity. Some enjoyed going to the local park to play & have a picnic, others enjoyed travelling on the bus or tram into the city centre, visiting Museums, the beach, Gorgie City Farm, the Botanics. Other children went to their local leisure/ community centres participating in dance classes, swimming and activities they enjoyed. We encouraged low cost activity that would be affordable and sustainable for the family in the future when we ended.
Mum and Dad have 2 boys, John and James. John is non-verbal, has sensory issues and is currently under assessment for Autism. John is full-on & demanding of attention, he is constant, full of energy and always on the go and loves being outdoors. He is also very clingy & attached to mum. John screams a lot and becomes impatient & frustrated and he requires more visual communication. He is also very tactile and will physically seek out hugs. James is 6 yrs old and has a diagnosis of Autism Spectrum Disorder, he is sensitive to sudden and/or loud noises, suffers with anxiety and some delays in his speech. Compared to his brother James is much quieter, tending to like his own company and finds it difficult to interact with his brother/peers/other adults. The family applied for support for John to enable them to spend quality time and focus with their older son, James, whilst John would have the opportunity to gain trust and spend time with another adult and do activities that were fun, stimulating and that he would enjoy. The family were matched with a skilled & reliable support worker who was experienced in supporting children with Autism Spectrum Disorder and non-verbal communication. She developed and provided stimulating experiences and activities for John out with the family home and ensured that she followed the parents lead so that there was consistency of approach in both John’s routine and how she managed his behaviours. Both the parents and John formed a good/positive & trusting relationship with the worker who planned activities appropriate to child’s age/stage of development each week to encourage child to engage/participate which were specific to his love of outdoors, energetic and addressing his sensory issues e.g. water, sand etc. She regularly fed back to mum and dad about the activities that John particularly enjoyed. Mum and dad were able to focus on and spend good quality time with their other child, going to places and doing things with him that he enjoyed which was positive too. CAHMS are now in place and there currently an ongoing assessment of James being carried out and whilst the family have been made aware of other services due to John’s young age they are currently very limited with regards to identifying/ accessing groups/services which are appropriate for his support needs at this point in time.. Feedback from the parents. “She’s fantastic, one in a million and I honestly don’t think we could manage without her, just to be able to spend that time with James means so much and was much needed.” “M ( worker) just gets on with it and I know that John is happy & having fun and I feel confident that M is looking after him.”
Parents/carers of children with disabilities will have spent time doing something they enjoy whilst confident their child is having fun with a worker. Parents/carers of children with disabilities will feel less stressed and isolated.
This project outcome was fully achieved as we discussed with each individual family what it was they needed and how best, in terms of times and days, that the service should be delivered in order to provide maximum impact for the parents/cares in terms of their respite and how they wanted to spend their time. A number of parent/carers wanted us to spend time with their child with disabilities so that they could have focused, quality ,stress free and positive time with one or more of their other children on a regular basis. It was important for parents/carers to meet their worker/volunteer and get to know them and see them interact with their child before feeling able and confident to leave them and enjoy their respite. Having the knowledge and confidence that their child enjoys their time with the worker, looks forward to it and has fun is key to parent/carers being able to not feel anxious or stressed about leaving their child and fully enjoy their respite.
Mum has two daughters. Her older daughter has recently been diagnosed with Autism and mum sees the same behaviour in her younger daughter. Neither child listens to mum with regards to boundaries. The girls climb on furniture and the kitchen work surfaces in the home and they have no concept of danger. Mum feels she has no control with her parenting and uses rewards to get the girls to co-operate, giving in to their demands. Mum is scared to take the girls out in case they get hurt so they have never been to a park to play. Mum self referred, she felt isolated and unsure as a result of her daughters ‘Autism’ diagnosis, she lacked confidence in her abilities as a parent and felt that she would benefit from guidance. It was felt that the family need an experienced, reliable support worker who could give mum confidence with her parenting including getting the family out of the home safely and helping mum find strategies that she is comfortable using that will allow her to take the girls out. Mum was also looking for help regarding appropriate play activities and experiences to engage and stimulate the girls. Mum was encouraged to access local groups to create strong support networks for herself whilst the worker spent time with both of her girls, doing activities with them that they enjoyed and introducing and supporting routines and boundaries with both girls which Mum could sustain. The relationship between the worker and Mum developed so that she felt comfortable discussing her thoughts and feelings. Mum was encouraged to attend parenting support groups/workshops, allowing her to develop her own strategies surrounding her family and giving her confidence in her own abilities. Mum was also encouraged to link in with a group where other parents had children with an Autism diagnosis which was positive for her and enabled her to meet other families which offered her a good support network. The family all had a good relationship with the Worker and looked forward to her weekly visit. Mum is now more open and feels comfortable sharing her feelings and asking for advice and guidance. There has been a focus on strengthening boundaries and helping Mum to implement a routine that works for the family. Mum is now more confident and aware of the girls abilities and interests and now able to take them to visit the park and go for walks and explore the local area. Whilst mum initially presented in a low mood, being emotional and teary on a number of occasions she has been able to talk about this and has been encouraged to visit her GP. She has also now joined local gym and a local walking group and is physically feeling better and is making friends of her own. Feedback from Mum, 'This is a fantastic service, my regular session allows me to get my energy back and recharge.' 'We don't have many friends or family and knowing we would see the same person at the same time each week has given us something to look forward to and allowed me to make a plan for my week.' 'I now have the confidence to take my girls out and I never had this before, we have benefited greatly from having May with us, I can't thank you enough.'
Parents/carers of children will feel more able to cope in their caring capacity. Parents will have increased knowledge about other services and supports available for them and their families. Parents will have increased awareness/knowledge and understanding of Self Directed Support.
Planned, regular respite meant that parents knew they had some time for themselves coming up. They told us this gave them something to look forward to and meant they felt more able to cope in between sessions. We explored what other services and supports parents were aware of/currently accessing. We explained about what else there was both locally and across the city. Sometimes we took their child to activities to see if they enjoyed them, on other occasions we encouraged parents to explore to see if they felt appropriate for them and their family so that they could access these once our service came to an end. Where families were not aware of Self Directed Support we encouraged them to start the process. We encouraged families to think about what, when and how the support their future supports could provide maximum benefit. Where families had been unsuccessful in their SDS application and we helped them to identify what other supports they could access instead.
Mum and Dad have 2 sons, James and Jack. James is 3 years old and is profoundly deaf. He has developmental delay along with a number of medical conditions which mean he has to be supervised continually. Mum feels that she is unable to leave him with anyone else due to his level of need. Dad works long, varied hours setting up his own business and Mum runs the home and lends a hand with the behind the scenes work involved in a business start-up. Mum feels overwhelmed and guilty at the lack of time she can offer her boys individually. Dad feels overwhelmed for Mum. Whilst initially support was provided to give an extra pair of hands once a week to assist Mum with the evening routine at review we identified that Mum really needed time to herself as she didn’t get this at all. After discussion with the parents it was agreed to change the respite and support from an evening session to one morning a week so that Mum could have time to herself which she used to attend a Bootcamp, met family members for coffee and a chat and shopping. Both parents were keen to attend a B.S.L class in the evening so support was changed to accommodate this for them. However the course was subsequently postponed but it was felt the parents could still do with time together we continued to provide respite in the evening which also meant that when the course started again there was no disruption for the boys as it was already established. Mum and Dad used the evenings to work on their business plan, go out for dinner, the cinema, and had a night out with boot camp attendees. Their feedback was so positive and they really enjoyed their time together, which also gave Mum another focus and confidence in herself again. The couple realised that whilst a close family member had died in the last year they had not had time to grieve as at the time their child’s health needs, visiting various doctors and specialists in different cities etc. had taken precedence. Uninterrupted time together was something they never had, and they also felt they benefited from having time together to discuss the future and look into other support options.
Parents/carers will be more aware of other services and supports available to them and their families. Parents/carers will fell less isolated and stressed. Parents / carers will have improved relationships between parents/carers as a couple, parent/carers& siblings & sibling relations.
This project outcome was fully achieved. Taking time to agree when and how the support should be delivered was key to identifying how maximise the impact and benefit across the family as a unit. Where possible we would look to engage with the child with disability at a time which enabled the parent / carer to spend time with siblings - doing activities or going to places with them; alternatively the sessions took place in the evening allowing couples some time off to spend together to recharge, talk about how they were feeling, make plans and just be a couple. A number of parent/ carers chose to use their respite time going to join groups or activities as this enabled them to have more social interaction with other adults and develop their own social supports and networks. We were proactive and encouraged parents who were eligible to start the SDS process, access VOCAL carer support services etc with a view to ensuring they had on going supports in place when our input ended
Susan is a lone parent mother with 3 children Alan is 9 yrs old, Brian is 7 yrs old & Cole is 3 yrs old. Alan has Down's Syndrome, sensory issues (mainly loud noises) and has health issues relating to his stomach & bladder/bowel which he has daily medication for. He is a strong & active boy, with no safety awareness and his behaviour can be random/unpredictable and aggressive. Alan can be very demanding of his mum’s attention and she finds it difficult to spend quality time with her younger two children because of this. Mum also really struggles to go on any kind of outing with the children due to Alan’s behaviour (he is quick to run off) and finding activities to suit their individual age/stage of development. A worker was initially introduced to the family to provide mum with support/extra pair of hands within the family home. It was felt this would be most beneficial if it was in the evening to help with homework & bedtime routines and also at other times to support mum to be able to go on family outings. It was felt most beneficial if the worker spent 1:1 time with Alan engaging in positive play & interaction and play, participating in a variety of activities which were child led as this allowed mum quality time with her younger 2 children. Mum also valued the emotional support & encouragement that the worker provided as well as the practical help and having another adult to talk to and share her concerns. As the support provided was flexible mum was able to have time for herself to attend some social events as well as being able to attend school parent’s meetings in the evening. Mum fed back that she felt relationships between her and her 2 younger children also had improved & were more positive. Mum also said she feels less stressed & tired and that she feels her coping mechanisms have improved. Mum was been signposted on to the City of Edinburgh Council Social Care Direct request a Section 23 Assessment of Need by Social Work which would potentially enable her to access statutory support and self-directed support funding. This process has subsequently started. She has also been made aware of other agencies she can access for advice/support. Positively Alan is now receiving intensive behaviour therapy on a weekly basis and 1:1 Befriending support for Alan due to start in coming months. The younger children are now engaging in and being supported by a Young Carers Group. Mum said “It’s been great and L is lovely/really nice and so easy to talk to.” “Alan especially has loved it and he has told everyone about L and the time they spend together and he has it all planned what him & L will do”
Children and young people with disabilities will engage in stimulating and rewarding activity with their worker on a regular basis. Children with disabilities will spend regular time with a worker on weekly basis.
This outcome was achieved as many families with children with disabilities who we started working with had very little knowledge of what was available and accessible for them and their children in their local area and city wide. We proactively encouraged families and children to think about what they would enjoy or what they might like to explore and this formed the basis of the 1:1 input. Children tried out new activities and went to new and different places depending on their individual interests and we noted if these were something they enjoyed or not and fed this back to the parents. Children were encourage to try a range of activities and go to different places over the course of the service, however we were always mindful of focusing on stimulating experiences and play and ensuring activities were affordable and sustainable for the family once the service ended.
Mum has 2 children, Ben and Cheryl. Ben has a diagnosis of Autism Spectrum Disorder, sensory issues (mainly loud noises) and he struggles to be on his own and suffers with anxiety & has strong attachment issues. He is a strong & active boy, with no safety awareness which is a concern as he will just run off. His speech & language is delayed and he is currently received support from SALT through his nursery, and 1:1 ASL has been applied for to support his transition into P1. Ben can be very demanding and struggles to interact with his sister and his peers. Mum struggles to go on any kind of outing with both the children due to Ben’s needs and finds it difficult to identify activities to suit the children’s individual age/stage of development. It was identified that it would be helpful to provide support to Mum so that she could spend 1:1 quality time with Ben and support her to go with him to 1:1 swimming classes. In addition the worker would spend 1:1 time with Ben, engaging in stimulating, positive play & interaction which would give Mum some much needed respite. In addition to providing emotional support & encouragement to the family the worker provides practical help & support for Mum including giving her advice and information about other services that would benefit her as a parent and her children including CEC Disability Team, The Yard, Vocal, and Lothian Autistic Society. The 1:1 support enables Ben to engages in positive interaction & play on a regular basis and he participated in a variety of activities including going to play at the local park, bus trips to city centre, Princes Street Gardens, the Botanics, visiting Gorgie City farm etc.. Mum is now more confident in being able to take Ben to swimming lessons and generally feels more able to engage in other mainstream leisure activities with her children. This in turn has let to improved & more positive relationship between mum & her children and she reports to feeling less stressed & that her coping mechanisms have improved Mum’s feedback……. “Ben really loves her time with M, she asks when M is coming and all chatty when they return to tell me what they have been up to.”
Families were able to tell us why the short break made a difference to them as individuals and parent/carers. We have gathered information as to how parent/carers spent their time and the benefits to them. We gathered feedback from children and siblings as to what was good.
Families were fully engaged in the service they received and they were encouraged to think about what it was they needed, how and when it should be delivered and were asked to consider how to maximise their time. In some cases it was beneficial for us to collect a child from school so that the parent/carer had a longer respite as for them it could start when the child went to school. On some occasions it maximised the respite if the parents dropped the child off and met their worker away from the family home and once they had completed their outing or activity together they could return home together. Key to the success of this outcome was the flexibility of the service,being able to change and adapt in terms of when and how it was delivered in response to changing needs of each family and individuals - ie a service that fitted round the family and did not intrude on or interfere with what the family already had in place and that was working for them.
Mum and Dad in their 30’s with 2 sons, James and Jack. James is 3 years old and is profoundly deaf and he has developmental delay along with a number of medical conditions which mean he has to be supervised continually. Jess feels that she is unable to leave him with anyone else due to his level of need. The family have only recently moved to Edinburgh. Dad works long, varied hours setting up his own business and Mum runs the home and lends a hand with the behind the scenes work involved in a business start-up. Mum feels overwhelmed and guilty at the lack of time she can offer her boys individually. Dad feels overwhelmed for Mum After meeting with the family it was identified that Mum would appreciate an extra pair of hands once a week to assist with the evening routine, allowing her time to focus on one child while the worker is with the other child. This worked for a short time, both Mum and the boys were comfortable and enjoyed the worker being in the home, however after a review we identified that Mum really needed time to herself as she didn’t get this at all. The worker changed the respite time to one morning per week, allowing Mum time to herself which she used this to attend a Bootcamp, met family members for coffee and a chat, did shopping etc. Both parents attended a B.S.L class an evening per week and initially Granny and Mum’s brother looked after the boys. However the brother had been lashing out at the boys when babysitting and the parents decided they did not want this behaviour around their boys as it was clearly unsettling them. After discussion the family’s worker changed the day and time of delivery and was able to look after both boys while mum and dad attended their BSL group. Initially there were several short evening visits in order for mum to feel certain that the worker was confident in looking after both boys and comfortable following the bed time routine. Sessions progressed well, the worker established a good relationship with the family and both boys but unfortunately the parents no longer enjoyed the group they were attending due to a change in tutor so they postponed the course, gaining entry onto the new block with their previous tutor which started in 4 months. As it was felt the parents could still do with time together we kept the worker in place to continue to allow the parents respite in the evening which also meant that when the course started again there was no disruption for the boys as it was already established. Mum and Dad then used the evening to work on their business plan, go out for dinner, the cinema, and had a night out with boot camp attendees. Their feedback was so positive, they really enjoyed their time together giving Mum another focus and confidence in herself again. The couple realised that the previous few years had been difficult for them. Whilst there had been close family bereavement they needed to focus on James at that time visiting various doctors and specialists in different cities and Mum was pregnant so they never really had time to stop and think about all that had gone on or have the space and time to properly grieve. Having time more recently as a couple to talk about this has been a great comfort for them both. Uninterrupted time together as a couple was something they had never had and they realise now that they felt overwhelmed with the level of care they gave their two boys. James’ needs are constantly surprising them as he matures and their couple time together has allowed them to discuss the future and look into other support options. Our service provided a consistent, flexible service that was responsive and tailored to the needs of this family, working with them in order to ensure the service was benefiting them as much as possible. Our service worked at the pace of the family, ensuring children and parents had time to adjust and feel comfortable with new routines - this was greatly appreciated by the family. Sessions for the children are stimulating and fun and the parents comment regularly on how relaxed the boys seem and how they call out the workers name whenever the doorbell rings.