Flexible Family Respite
A story by Firsthand Lothian
We provided a flexible service, delivered in the family home and local community across Edinburgh, matching children with multiple support needs with a worker who encouraged and supported them to access/participate in activities.
This allowed the family some regular respite, each session duration was between 2 and 6 hours, tailored to meet each family’s needs and for a maximum of 80 hours.
What Flexible Family Respite did
Over the last year we recruited 13 new volunteers and 10 staff to work with families with children with disabilities. Once inducted and trained, volunteers who had limited experience/confidence to care for a child with disabilities on their own were able to work alongside experienced workers initially.
On the basis of feedback received from children and parents and our assessment of practice, 4 of the volunteers were offered paid sessional work with us after they had completed 6 months with a family. For a number of volunteers the hands on experience was invaluable in terms of their studies and it contributed to their longer term career aspirations. Exit feedback included " I thoroughly enjoyed my time & without the experience with the organisation I would not been able to enter the profession I have decided to pursue as a long term career path."
Once matched with a family the respite took place usually on a regular weekly basis for 3-4 hours either in the family home or in the local community. It was flexible and designed to maximise the benefit to the whole family. For example, if the session started with us meeting the child at the end of the school day the parent could have the morning and then the afternoon free from their caring responsibilities.
Many parents/carers used their respite to spend time with their other children or their partner, others took up swimming, yoga, went to the gym, each parent/carer did what they felt was best for them and helped recharge their batteries. Some parent /carers used the time to take up a night class or attend counselling sessions. As one parent said "'This is a fantastic service, my session allows me to get my energy back and recharge.'
Children and young people did a range of activities that they enjoyed on a 1:1 basis every week with their worker. Some enjoyed going to the local park, beach, to the museum, library etc, while others enjoyed the journey by bus or tram to places. Other children and young people enjoyed doing activities such as singing, reading, dancing, baking or messy play, each child/young person had the activity tailored to their needs and interests.
Mum is a lone parent, a mother with 3 children, Alan is 9 years old, Brian is 7 years old & Cole is 3 years 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 Mum 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 is difficult.
Action taken: an appropriately skilled & experienced Family Support Worker was introduced to the family to provide Mum with support/extra pair of hands within the family home (during the evening for help with homework & bedtime routine) and support to go on family outings. The Family Support Worker provided positive play & interaction with Alan to allow mum quality time with younger 2 children, the worker provided emotional support & encouragement to Mum as well as practical help & support for Mum. Mum was signposted to City of Edinburgh Council Social Care Direct to request a Section 23 Assessment of Need by Social Work which would potentially enable her to access statutory support and self-directed support funding. Mum was also given information to other appropriate agencies for advice and support.
Outcomes Achieved were; positive relationships formed between children/worker & parent/worker, Alan engages in positive interaction & play, participating in a variety of activities which are child led. Mum able to have time for herself to attend some social events, school parent’s meetings in the evening. Mum has improved & more positive relationships with her 2 younger children, and reports feeling less stressed & tired. Mum said that she feels her coping mechanisms have improved as Alan is receiving intensive behaviour therapy on a weekly basis. Section 23 Assessment of Need process has started, with 1:1 Befriending support for Alan due to start soon. The younger children are engaging in and being supported by Younger Carers Group.
Feedback from Parent; “It’s been great and L ( worker) 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”
Noel attended mainstream nursery 4 mornings per week but his session times were reduced. Mum has had a difficult relationship with the nursery and said that she feels ‘the nursery see Noel as an inconvenience’. Noel finds it difficult to interact with his peers and will tend to play alongside rather than with them. Liam attends main stream school and is making good progress and has formed positive relationships with his peers.
At the time of application, mum had separated from the children’s father although their relationship remains positive for the sake of the children. Whilst he still has contact with the children this is sporadic and the children only see him when he visits the family home. Liam thinks his Daddy has a new job and lives away. Mum had heard about our service from another parent and made a self-referral stating she would like support for Noel so she could have “some special time with Liam” taking him to places & do activities that she finds difficult to go to with Noel.
The Co-ordinator visited the family at home as part of the initial assessment and identified the need for Noel to have some 1:1 care & support whilst Mum and Liam enjoyed some quality time together. The Co-ordinator matched the family with a worker who had experience of early years & disability. It was discussed and agreed that Mum would introduce the Worker to Noel’s nursery/staff so that nursery pick-up could be part of the session, allowing Mum more time to spend with Liam.
The worker provided 1:1 positive interaction & play with both indoor & outdoor activities e.g. painting/play dough to help with sensory issues, and trips to the park with Noel. Help, support & practical advice & strategies put into place for mum re boundaries & managing behaviours e.g. use of visual timetable as there was an expressed need for consistency and support to go on outings. The worker provided a listening ear, reassurance, emotional support & encouragement to mum.
Mum was supported & encouraged to join activities/groups within the community, i.e. Bookbug at local library, she was provided with advice around Section 23 Assessment of Need and how to access statutory services. The Co-ordinator referred the family to Kindred & VOCAL and other agencies that were disability specific and appropriate to her needs.
Outcomes achieved; Noel enjoys engaging in more variety of activities to help develop his confidence, speech & social skills, mum has reported improved behaviour with both children. Positive relationships formed between child/worker & parent/worker, with improved and positive relationships between mum and children. Mum’s confidence & self-esteem has increased, and reports significantly reduced feelings of isolation. Mum said that she feels her coping mechanisms have improved and increased. and she is more aware of other supports and agencies she can approach for more support.
Review Feedback from Parent re the Service/Family Support Worker; “The service has been really good for us all and I couldn’t have been more pleased”. “Noel always had a lovely time with A( worker), he got excited about her coming and he always gave her a little kiss and a cuddle when she was leaving”.
Review Feedback from the Family Support Worker, “It made a big difference to Mum to have that time to spend with Liam knowing that Noel was left in good hands, especially after seeing how much Noel had enjoyed the sessions and that he was excited to know I was coming”.
Brad has made friends at school (which is out with his community) but has had some issues with local children and the combination of all these issues, has led to Brad becoming socially isolated. Brad mostly plays on his own, with lots of imaginative play, he is repetitive in his play and dislikes new activities which can be a challenge in getting him to participate in a wider range of activities. Recently Brad has appeared much more withdrawn and his Dad described his mood as ‘up & down’. Brad has become quite anxious about things and generally seems less interested in engaging with his peers and/or activities.
A referral was made by Brad’s CLDN to provide support for Brad to attend a group and/or engage in activities within in local community to improve his self-esteem and social interaction with his peers, he was matched with a skilled worker who encouraged and maintained routine & consistency in the relationship created between Brad and the worker. Support provided to Brad to enable him to engage in a group and/or activities of his choice within the local community, and provided 1:1 support & encouragement to Brad to increase confidence & self-esteem.
Outcomes Achieved were; Brad has formed positive relationships with the Family Support Worker, Brad’s worker has helped and supported him to form positive relationships with his peers within the local community. Brad enjoys engaging in activities with the worker out with the family home e.g. trips to the local park to play football, he has been supported to engage in a group at local community centre. Brad’s behaviour has improved due to routine & consistency, his confidence & self-esteem has increased and he has increased social interaction & social skills. Dad has been able to spend quality time with the 2 siblings on a regular basis, and he has improved relationship with Brad’s siblings.
Feedback from Parent, “R (worker) has been brilliant for Brad and has done a great job for all of us. At times, R has taken both Brad and Dan on, which has allowed me to spend 1:1 time with Cheryl as she loves shopping.” “Brad is over the moon with R, he really looks forward to their time together and R has helped him so much.”
What Firsthand Lothian has learnedThe funding has allowed us to provide a much needed support to those families who have been trying to cope without other support in place and really struggling. Over the last 6 months in particular of the project we noticed a marked increase in the number of referrals from Social Work for families whose children had quite significant health needs and multiple disabilities and who were not being assessed as being in crisis therefore not deemed to be eligible for any statutory input.
The concern we have is that the longer term impact of this approach could be that families with children with less complex needs who clearly benefit from short term support and respite at the right time and which helps them become more resilient will find it harder to access services. There are concerns that statutory agencies are looking more and more towards the voluntary sector to work with families who will not really benefit from short term input but, as there is nothing else available for them, it is seen as at least being able to offer something which is "better than nothing".
Of the referrals we received over this year around a third were self referrals, families not in receipt of any other services and supports and often not aware they could ask for /that there were support services available to help them. A further third of our referrals were from other voluntary organisations working across Edinburgh who were either unable to provide the level of help and support that the family needed or had been providing support to the family as unit but not offering respite for the parent/carer. The final third of our referrals came from statutory services including CAMHs, Health Visitors, Social Workers and Housing.
From experience it can appear that when a family is in crisis a number of services and agencies are asked to get involved. However as this tends to happen all at the same time it can often result in these supports all coming to an end at the same time. For families the extremes of levels of input from, what can sometimes feel like too much, to suddenly no support is rarely a positive or sustainable way of supporting them. Over the past year we have become much more assertive at rejecting referrals if we find there are other supports in place suggesting to the family and referrer that we would only look to offer respite and support once other services have ended.
A significant challenge continues to be finding staff and volunteers who want to or are able to work at weekends. Apart from some specific situations when the parent carer wants to attend a specific activity or class in the evening or counselling during the day most families feel that respite delivered Friday to Sunday will provide maximum benefit for everyone within the family, not just the parent/carer or child with disabilities. From a practical perspective too there is much more to do with children and young people at weekends, that is when most activities or places of interest are available as opposed to on a weekday evening!
We have also learned that not all areas across Edinburgh are equal with some communities and areas having a range of activities and community events and resources available and other areas where there is very little to do. For these less well serviced areas we have been able to focus on using public transport with the child/young person to go places and recognise for some children the experience of a tram journey may be as, if not more, exiting than the final destination!
Finally we are reassured that families would rather wait for and benefit from getting the right match a worker or volunteer that "gets" their child or children. This relationship is key to success, also important is that the respite is delivered at time that will benefit everyone within the family they would prefer to wait than take respite at another time even if it could start more quickly.