Flexible Family Support
A story by Firsthand Lothian
Providing tailored 1:1 support to families living across Edinburgh who have one or more children with disabilities. We matched a worker with each child and together they engaged in fun activities on a weekly basis, usually at the weekends for 3 to 4 hours, enabling parents to enjoy regular respite.
What Flexible Family Support did
We delivered weekly 1:1 sessions, mainly at the weekends for 3 to 4 hours, which were tailored to each child's individual interests and abilities.
A skilled and supported worker was carefully matched with a family and child, spending time with them doing activities and going to places they enjoyed and which were fun. Sessions were delivered at a time that maximised the benefits of respite for the whole family.
The children who benefitted were in mainstream education but struggling day to day and looked forward to having 1:1 time each week with their worker doing activities that developed their confidence, communication and social skills, have new experiences and go to new places both in their local community and across the city more broadly.
We supported children and families where it was clear that sustainable change could be achieved over 6 to 9 months and we agreed what it was the child / family wanted to be different as a result of our input.
Carers were encouraged to think about their own needs and what it was they needed to do to recharge their batteries. For some it was having time to spend with siblings of the child with disabilities; for others it was doing something for themselves which helped their physical and mental health. Carers were encouraged to attend Health and Wellbeing Sessions - morning sessions which ran weekly where they met other parent/carers and engaged in activities that helped them learn and try out activities that helped them manage their stress as well as socialise with other parent / carers who understood the challenges they faced day to day. Parent/carers fed back that they were able to use some of the techniques they learned at the sessions with their children to help them relax and better manage their stress.
What contributed to the success of the project was that Parent /Carers were encouraged to tell us what they wanted us to do and when they wanted our input. In addition they could access other support from us as and when they needed it eg Time 4 Mum, Parent and Carers groups as and Health and Wellbeing Sessions as well as being encouraged to so something for themselves on a regular basis.
What Firsthand Lothian has learned
We continue to learn through the delivery of this project - mainly by listening and encouraging people to talk openly and honestly and tell us what works and why and what could be better. We know it is the relationship of trust that parent / carers have in the organisation is key to success. Whilst we offer parent/carers support via the phone, the parent/carer group, the Health and Wellbeing Sessions and Time 4 Mum we know that people do not progress / access our projects in a linear fashion. Some start with Time 4 Mum and then recognise they would benefit from support and respite for their child with disabilities; others access weekly support for their child and through the trust they build with their worker / the co-ordinator are encouraged and supported to come along and meet other parent/carers at the Health and Wellbeing Sessions or the Parent & Carer group.
We accept and understand that for many parent / carers and their families the best laid plans can often go awry so we do not put pressure on people - we can adapt our delivery to better meet their needs and changing circumstances.
We have this year been aware of increasing levels of referrals as it would appear that there is very little available in Edinburgh for families with one or more children with disabilities. It certainly does not feel that provision is anywhere near what is was pre pandemic and groups that are now operating appear to be full to capacity - though it is not clear if that is because their capacity has reduced or through increased demand.
The overarching thing we have learned is that many parent/carers with one or more children with disabilities need more of a holistic offering. Respite on its own is great for those who know what they need to do to recharge and also have the confidence to get on and do it, but for some isolated and vulnerable parent / carers they need support and encouragement and help to prioritise their own needs and re- engage with who they used to be before they are able to do something for themselves. Having opportunities to meet and chat with other parent/carers can be affirming - they find out that they are not alone, that others find it a struggle too.
We are delighted that we have managed to source funding to enable us to offer more Health and Wellbeing Sessions to Parent/Carers. The feedback from those who have attended sessions has been really powerful and we are keen to develop and deliver this in other areas of the city over the coming year so that it is more accessible to more parent/carers.
“A breath from all the “musts” and “have tos”.
“I wanted to say how much I enjoyed today. It was most therapeutic as I wasn’t feeling great before coming due to a bit of stress and really made me feel whole again and rejuvenated.
"Its particularly lovely to have something to take away and add to my wellbeing tool kit"
"The laughter yoga was really fun. It boosted my mood"
" I like socialising through doing an activity as then I feel more relaxed"
" I felt happy after the session"
How Firsthand Lothian has benefitted from the funding
Better Breaks funding has enabled us to secure more funding from other smaller trusts and foundations so that we can work with more children and young people with disabilities over the year. With out Better Breaks funding we would have struggled to be able to support the numbers of families who have applied to us over the year. In addition it has enabled us to be able to plan ahead for the year in terms of recruitment of staff and volunteers and training. Better breaks funding has helped us be able to expand our delivery to better support parent/ carers. This has been particularly important post Covid / lockdowns as it appears to us that many more families are very isolated and we more parent/carers are struggling with their mental health.
42 children and young people with disabilities will look forward to spending 1:1 time with their worker every week, engaging in a range of new activities and visiting new places which are stimulating, fun and that they enjoy.
This outcome was achieved with all the children and young people with disabilities who accessed the project. They were carefully matched 1:1 with a worker who they met up with every week for 3 - 4 hours, usually at the weekends, and through the trusting and positive relationship developed they looked forward to engaging in a variety of activities tailored to their interests week to week. Activities included playing at the local park, feeding the ducks, picking flowers, playing ball games, going for picnics, trampolining, going to the beach, building sandcastles, rolling tyres down a hill, climbing Arthurs seat, woodland walks etc. Other activities included arts and crafts- drawing and making things, baking cookies and cakes, singing and dancing. Children and young people were encouraged to travel by bus to visit new places including the Botanics, The Museum of Scotland, Art Galleries, Lauriston Castle, Portobello, Libraries etc “I like the museum! I want to come again
Introduction Mum and Dad have 2 children aged 3 and 7 years. Lyle is 7 years old and has ASD and suspected ADHD. Lyle really struggles with communication, doesn’t have an understanding or awareness of danger and needs constant supervision in order to keep him safe. Lyle also struggles when out of the family home if it is particularly busy or loud which means that he struggles to be fully independent. Mum felt that Lyle would benefit from building a 1:1 relationship with another adult who was not a family member. She thought that by spending some time out with the family home Lyle would improve his self-confidence and independence as well as develop his communication skills. Activity undertaken. Initially the worker met with Mum and Lyle together - going out to local parks with them so that they could all get to know each other and develop a positive and trusting relationship. This also enabled the worker to observe and mirror the ways Mum helped Lyle manage his behaviours and emotions when he was out and about in the community. After a few sessions Mum was confident that the worker could manage Lyle and so they began going out every weekend together – exploring many new and different places that he had not been to before including the Botanic Gardens, Lauriston Castle, parks, art galleries and museums. He enjoyed and looked forward to his weekly sessions with his worker and thrived on his new experiences. The worker helped Lyle develop his communication skills and confidence by encouraging him to do things for himself e.g. getting on the bus and speaking to the bus driver, going into shops to buy something etc. Lyle and his worker also engaged in a lot of arts and crafts - discussing and planning different activities relating to the seasons coming up e.g. Halloween, Christmas, Spring etc. OUTCOMES AND THE DIFFERENCES MADE For Lyle Lyle became very confident and comfortable around his worker and they enjoyed their time together. Lyle’s communication and speech notably improved – initially he did not speak much to his worker but as time went on he began to talk to her more as his confidence developed . Initially the worker had to show Lyle how to do simple tasks but now she simply asks him to do it and he understands most things e.g. pushing the buttons at the crossings, putting rubbish in the bin, wiping down the table etc. Lyle has become more confident as will get on and off the bus by himself and say hello and thank you to the bus driver. Lyle has become more independent when out and about – he will go to the toilet and wash his hands by himself without being reminded. Lyle is much more willing to interact with others including playing with children at the park and waiting his turn when it is busy park Feedback from Lyle included: "Please come back next week" “I really like the gallery” Mum Positively Mum got to spend regular 1:1 time with Lyles younger sister which benefitted them both and the family as a whole. Feedback from Mum included: “ I have seen changes with my child behaviour as well his interaction with others”. "He really looks forward to seeing you every Sunday." “I think Lyle really trusts you and feels comfortable around you”. “I think he is definitely showing improvement”.
Carers will have engaged in activities that they enjoy on a regular weekly basis knowing that their child with disabilities is having fun with their worker
This was achieved and exceeded! Carers enjoyed and looked forward to weekly respite at weekends, confident that their child with disabilities looked forward to and enjoyed their time with their worker "He really looks forward to seeing you every Sunday." ( Mum) We encouraged families to think about how they would spend their time and tailored the time/ day of our delivery to ensure they were able to gain maximum benefit through doing something for themselves, as a couple, with siblings, socialising with friends and family, gardening etc. Positively we were able to be flexible and respond to changes in family circumstances as they arose. In addition we encouraged and supported carers to come to Health and Wellbeing Sessions which we delivered in blocks of 6 weekly mornings where they could spend time with other parent/carers and try new activities. Feedback from these sessions included:- "I always look forward to the group - it helps with my mental wellbeing"
Mum lives at home with Bella aged 4. Mum also has ASD and has no family around her and is socially isolated and struggles with her physical health. Bella is a very social and happy little girl who loves singing and arts and crafts. Mum applied for support so that she can study for her exams and to get help and support to develop and be more able to manage in her parenting role. To maximise Mums study time it was agreed the worker would do a nursery pick up which would give mum time while Bella was at nursery and then after. Mum and the nursery highlighted that Bella had little safety awareness and often refused to hold hands and would run away. The worker spent time with Bella every Wednesday, after nursery, and they very quickly developed a strong bond and positive relationship. Bella was very excited every time she was picked up. At first the worker would always use the reins Mum provided when she went out with Bella due to her lack of safety awareness and listening skills. The worker did work with Bella around hand holding and encouraged her to listen. She showed examples of how to cross the road safely, encouraging Bella to press the button and watch for the green man before crossing. The worker would reminded Bella to look and would say things like “The cars have stopped - we can cross” or “no cars - we can cross”. Eventually Bella began to understand and listen to the worker enough for the worker to begin to not use the reins on some occasions. The sessions were spent doing different activities out the family home including going to Love Farm and soft play and, when the weather was bad or if Bella was feeling tired, sessions were spent in the family home doing arts and crafts. Initially Mum was quite isolated and struggling to get out so at the end of each session the worker spent time chatting to Mum about her week and spoke to her about any concerns she may have for Bella. Mum would go to the worker for guidance around Bella’s behaviour and development. To start with Mum would spend a lot of the sessions in the house studying while the worker was out with Bella. However once her exams were over Mum began to feel more confident and she began to go out more and more until she was spending the majority of her respite time out of the house - going to the café with friends, going to the gym etc. Mums feedback has included: “I feel amazing and way more confident in my parenting as well as in myself.” “I write a list of all the things I wants to do during the session and look forward to it all week.” “I have a lot more energy to come back and take care of Bella after a much-needed break without her.”
Parent/Carers will report improved health and wellbeing and feel less stressed in their role
This was achieved as carers were able to benefit directly from weekly respite, usually at weekends, which they looked forward to and were encouraged to do something that recharged their batteries. As sessions started and finished at the family home they were able to enjoy instant respite as they did not have to travel to drop their disabled child off at a venue. Knowing that their child was spending time with another adult they trusted and looked forward to seeing every week also helped to reduce their stress and helped them not feel guilty for wanting time to themselves. Carers were also encouraged to connect with other carers through our parent and carer on line group and to attend the health and wellbeing sessions we delivered during the week when their children were at school. These sessions were varied and focussed on activities that helped to manage stress and that could be replicated at home " I loved the mindfulness in the woods - I felt so relaxed afterwards"
Introduction Mum has two children who both live with her – an older daughter and her 14 year old son who has Autism. She is a lone parent and has some physical health issues of her own which are exacerbated by stress. Mum’s confidence was low especially with regard to going out and about and she said she had previously been anxious, depressed and suicidal. Initially mum said that she was quite isolated and that this had got worse over the Covid lockdowns. Mum wanted to build her confidence and be able to go out and about again. Whilst a worker was matched with her son, spending time weekly with him at weekends and doing activities that he enjoyed and looked forward to, Mum was encouraged to come along to the Health and Wellbeing Sessions we were delivering for parent/ carers. Through the trusting relationship that mum developed with the worker she was prepared to give it a go. •Mum attended Tai Chi offered to parent/carers through the Health& Wellbeing session where she also had the opportunity to meet other parent/carers. •Mum was helped to access beauty treatments which she had identified would benefit her own wellbeing and relaxation. •Mum was made aware of and supported to connect with LCIL ( Lothian Centre for Inclusive Living) to help with Lifestyle Management to help her better manage her health condition. Outcome /Impact/ Differences •Mum is regularly organising and attending beauty treatments for her own wellbeing. •Mum is more self-aware and assertive. •Mum identified that she is beginning to set boundaries for her own wellbeing & personal relationships. •Mum recognises how important it is for her to be around positive people. •Mum now plans, organises and spends time socially with friends again. •Mum is relaxing and having fun with other people again. •Mum looks physically more relaxed and well. •Mum is taking time to organise her home and garden so the space is more relaxing &less stressful for her. Feedback from Mum “I feel like the old me. It’s given me my life back. I’ve got a different mindset. I am able to recognize my overthinking and low mood. I forgot how to be an adult with my own thoughts and choices”. “I like taking time to look after myself and going to the college beauty salon and hairdresser”. “My daughter has noticed that I am happier, and my children are happier that I am feeling better” “My friends say it is like having “the old me” back again!”
Disabled children and young people (aged 20 and under) and their carers will have improved wellbeing.
Both children and carers benefitted from improved well being through having 3 - 4 hours each week which they could look forward to which was focussed on meeting their individual needs. Having time aware from each other meant that carers were able to recharge their batteries and by doing something for themselves they were less stressed and more able to enjoy their parenting role. Having opportunities to spend time with other parent/ carers helped many realise they were not alone, the role is tough and they were doing a good job of parenting their child. In addition connecting with other parent / carers afforded opportunities to share knowledge and experiences eg around education, places to go etc. Children have improved wellbeing and increased confidence gained through trying new things and going to new places and having another adult to confide in and through travelling on public transport become more aware of what is available across the city and become more independent.
Alex is 6 years old and has a diagnosis of ASD and ADHD. Mum applied for support for Alex as she was very aware that he had developed attachment issues which meant he needed to be with her at all times and this was not good for either of them. Mum hoped that by developing a relationship with another adult Alex would be able to become more independent of her, have new experiences without her being there and develop his own self-confidence. Alex struggles with transitions and he needs consistency and routine as well as time-warnings and distraction techniques. He also needs lots of encouragement to engage with his peers as well as learning how to respect their space and boundaries. Alex enjoys arts and crafts, sensory activities and imaginative play with his soft toys. He is very active and loves being outdoors and he is particularly fascinated with objects blowing in the wind. Alex was matched with a creative worker who also had a love of the outdoors. Alex was introduced to The Yard where he enjoyed painting or making something and was then encouraged to move on to outdoor play. He loved hanging things on the tree branches and watching them blow in the wind. The worker noted that once he finally achieved what he wanted to do, he had a big smile on his face saying “I focused” - which is what she had been encouraging him to do! Sessions were also shaped to build in some life skills for Alex to become both more independent and gain a sense of achievement. He learned to use scissors, tie knots and put his shoes and jacket on himself which helped him concentrate and focus more. Alex needed help with his interactions with other adults and children as he was distant and nervous with those he didn’t know but too intimate when he was close to someone - wanting to cuddle/kiss them. Mum and the worker agreed to keep reinforcing that “cuddling and kissing is only for family” Alex sometimes felt sad or annoyed by other children’s actions e.g. if they were riding a bike that he wanted to go on, when a child wanted to join the same activity as him and he didn’t want them to. The worker initiated play with the other children so that Alex could observe how she did it and she spent time talking to Alex about how to make healthy connections, appropriate behaviour for different relationships, sharing etc. Alex developed his skills and confidence and was able to ask other children saying “excuse me, would you like to play with me”. Positively Alex became more confident in his interactions with others and was able to spend time away from Mum which was good for his social skills and communication. Mum also benefited from knowing that she could spend time doing something for herself and was able to start making plans for getting back into employment, building a network of friends of her own and learning new ways to look after her own health and wellbeing through engaging in the Health and Wellbeing Activities we delivered "I like trying activities and having an awareness of different kinds of ways to relax"
Additional project outcome
Carers will be more connected to other parent/ carers and feel less isolated. Carers will have developed supportive relationships with other carers through engaging with Time 4 Mum, Health and Wellbeing Sessions and the Parent and carer group.
Anne is a isolated, single mum with two young children with additional support needs and no family local to the area. During the initial meetings between Anne and the Co-ordinator to look at what and when we could offer support to her children to provide Anne with respite Anne opened up about her personal situation and how she had no other support networks of her own. Anne was made aware of the parent and carer group which met on line and encouraged to join and Time 4 Mum, where a volunteer is matched with a parent/carer and together they explored and engaged in activities in their local community until they were able to attend on their own. Through getting to know other parent and carers on line Anne expressed and interest in finding out more about Time 4 Mum and the Lead worker arranged to meet with her to take this forward. Anne acknowledged that her moods could be quite high and low, but talked positively about reaching personal goals. She felt she had lost confidence and wanted to learn to swim and lose weight. Goals Agreed • To improve physical fitness and feel healthier • To improve overall mood through exercise • To get into a weekly routine of going to the gym/swimming/doing an exercise class Anne was helped to secure a place on the “Get Moving Programme” which supported her with Weight Loss and Nutrition and an exercise programme at the gym. She then decided that rather than swimming she wanted to go to the gym once a week with her volunteer. Outcomes Achieved •Sleeping better and less pain in her feet •Feeling fitter and happier •Building new friendships and support networks with other parents and carers •Being more able to ask others for help and support •Making links in the local community •Going out with her children to groups and recreational activities Initially Anne did not see meeting new people or forming friendships as something she wanted to do. However Anne said at the end of her participation that she felt it had directly impacted on her being more connected to her local community. Feedback included: “I am getting better at going on my own…..not so nervous. I got to know the place and the routine. I talked to someone new, which I don’t usually do” “I now have the confidence to attend other carer events e.g. Eric Liddell and Vocal that I didn’t before and I am meeting new people which is good” “The social group at the art group makes me feel really comfortable …it’s small and everyone is lovely”