Flexible Family Respite
A story by Firsthand Lothian
We matched a worker with each family and provided flexible and responsive support which focused on encouraging and enabling children with disabilities to participate in activities, both in their own home and local community on a regular weekly basis for 3-4 hrs.
This in turn allowed the parent/carer some regular respite.
What Flexible Family Respite did
37 families accessed up to 80 hours of respite delivered in sessions of between 2 and 5 hours. Over the past year we have recruited, inducted and trained 18 sessional staff and 12 volunteers who bring with them a wide range of skills, knowledge and experience. The range of staff/volunteers age, personality and interests are taken into considerations when matching with families/children and having a varied group of people to choose from helps get the best fit.
Volunteers help where there is more than one child in the family e.g. a volunteer can care for siblings ensuring the parent/carer gets complete respite. Also where the child has significant health issues a worker and volunteer can be involved. The opportunity to gain experience alongside a member of staff has been invaluable and a number of volunteers have progressed to become sessional staff on the basis of their performance.
As we have encouraged families to say when and what they want their respite to look like, the majority are now asking for support at weekends and on Friday afternoons/evenings. This has been really positive as they are really involved in thinking about, shaping and directing their support and thus maximising the benefit. As most families want the service at the same time, for example late morning/afternoons it has put pressure on resources. Whereas before a member of staff worked with 5 or 6 families per week the concentrated demand at weekends has resulted in many staff only able to work with 2 or 3 families.
Significantly the majority of the activity has taken place out with the family home, be it trips to the local park, bus or tram trips across the city, visits to the beach or places of interest both locally and across the city. We focus on ensuring activity is affordable for the family and therefore sustainable after the service ends.
Parents/carers have used their respite in a variety of ways with many choosing to spend some regular time with non disabled siblings which has been really positive. Respite has been used to undertake a course of study, attend counselling, parenting support groups, participate in leisure & practical activities.
A is a lone parent mother with 2 young children B is 8 years old & C is 4 years old. The family are originally from Russia. A's husband/children's father died of cancer a year ago. A is isolated and has limited support from 2 close friends who have families of their own.
B has Down's Syndrome, sensory issues and is on a restricted diet as he has Irritable Bowel Syndrome. B has limited speech & uses visual aids to help support his communication. He is generally a happy, content & active boy who enjoys a variety of activities though only for short periods of time. C has some sensory issues (mainly loud noises). C will engage in a variety of activities and likes being busy & active.
Mum saw a leaflet about Firsthand Lothian in her local library and made a self-referral as she felt she really needed support. At the initial meeting at the family home Mum advised she was due to be starting a full time course at college. Mum was stressed & worried about being able to source appropriate after-school childcare & also having a lack of study time.
An appropriately skilled & experienced Family Support Worker who had knowledge & experience of caring for a child with a disability to support their needs, i.e. Visual aids was introduced to the children, provided positive play & interaction with the children, Family Support Worker provided emotional support & encouragement to Mum, Family Support Worker provided practical help & support for Mum. Signposting Mum to agencies/organisations who were able to provide relevant information & support regarding childcare & associated costs for when she started her college course.
Outcomes Achieved, positive relationships formed between children/worker & parent/worker, both children engage in positive interaction & play, participating in a variety of activities within the family home, local community and family outings, relationship between the parent and her children has improved and is positive. Mum feels her levels of stress have reduced, children feel listened to & more able to talk about their feelings, mum reports that she feels her coping mechanisms have improved /increased. Mum reports significantly reduced feelings of isolation, mum values the listening ear, support & encouragement and practical advice the worker provides and mum’s confidence & self-esteem has increased. Mum reports significantly reduced feelings of loneliness and has increased her social interaction through her studies.
Feedback from Parent, “Firsthand Lothian offered an invaluable support when I most needed it. Thank you very much!” and “As a parent, I didn’t have any worries when leaving my children in C’s (worker) care. The children enjoyed their time with C and I felt they were happy and safe.” “C has a nice personality and both children enjoyed her company. They developed a good relationship.”
Mum is a lone parent and lives at home with her youngest child M who is 5 years old. At time of application M was being assessed for ASD/ADHD. M presents with significant behavioural problems, he has no sense of danger nor safety awareness. M is obsessed with guns & blowing things up which he can take literally at times and thinks he has special powers. M sleeps approximately 4 hours a night, often not sleeping until 1.30 am and getting up at sun rise. He has been referred to the sleep clinic and prescribed melatonin, which has had little impact so far. M has sensory issues and is sensitive to loud noises. He also has issues with food and is on a restricted diet.
Mum’s recently lost her mother suddenly and is now grieving her loss and feeling very isolated. M’s behaviour has escalated since this & he is constantly swearing & lashing out at his mum.
A referral was made by the Additional Support for Learning Service who felt that Mum really was in need of some regular respite to help her cope in her role. At the initial visit to the family home it was also identified that M needed input to help him to engage in 1:1 positive play with another adult and that Mum needed support in the home in managing Michael’s behaviour.
Action taken, an appropriately skilled & experienced Family Support Worker was introduced & matched to the family, the worker provided 1:1 positive play & interaction with M, provided support & information and encouraged and supported Mum and M to engage in activities in the community. Through participating in activities in the local community, expanded Mum and the family’s social and support networks, mum received emotional support & encouragement from the worker, she received regular respite which enabled her to have some quality time for herself and/or use the time for practical tasks e.g. shopping, housework. Practical routines & boundaries were identified and established & Mum was able to maintain these as time went on, also provided practical advice & support to Mum in coping with the demands of her child & managing his behaviours.
Outcomes Achieved, M enjoys engaging in a wider variety of activities, more so out with the family home, his behaviour has improved through establishing routine & consistency. Positive relationships formed between child/worker & parent/worker, improved and positive relationship between Mum and her child
Mum is significantly more active with her child i.e. play activities & outings, mum’s confidence & self-esteem has increased, mum reports significantly reduced feelings of isolation and reports that she feels her coping mechanisms have improved /increased.
Feedback from Parent, “R is a lovely woman who M loves and she is always warm & caring with him.” and “There used to be a time when it was a fight to get M to go out and now when he knows that it is R’s day he is sat waiting on her to come.” “It’s great to have 3 hours peace without any anxiety and with the reassurance that M is having fun, is safe and being well looked after.”
B is 13 years old and lives at home with his Dad and 2 younger siblings (C & D). B has a moderate learning disability, visual impairment, sensory issues & difficulties with social interaction. B is a vulnerable young person, he cannot judge risk in the same way as his peers and has no road sense or awareness of how to keep himself safe. B has made friends at school (which is out with his community) but has had some issues with local children and with the combination of all these issues, has led to B becoming socially isolated. B 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.
B can display challenging behaviour when he is anxious or frustrated that he cannot do the things he would like to be able to do. He can become distracted and his focus is poor which affects his ability to listen & retain information. Recently B has appeared much more withdrawn and his Dad described his mood as ‘up & down’. B has become quite anxious about things and generally seems less interested in engaging with his peers and/or activities.
Reason for Referral
A referral was made by B’s CLDN to provide support for B to attend a group and/or engage in activities within in local community to improve his self-esteem and social interaction with his peers. The actions taken were, an appropriately skilled & experienced Family Support Worker was introduced & matched with B, support provided to B to enable him to engage in a group and/or activities of his choice within the local community. Provided 1:1 support & encouragement to B to increase confidence & self-esteem, & maintained routine & consistency in the relationship between B ad the worker, formed a positive relationship between B and his worker and helped and supported him to form positive relationships with his peers.
Outcomes Achieved were, B has formed positive relationships with the Family Support Worker and his peers within the local community, B enjoys engaging in activities with the Worker out with the family home e.g trips to the local park to play football. B has been supported to engage in group at local community centre, his behaviour has improved due to routine & consistency his confidence & self-esteem has increased. B has increased social interaction & social skills
Dad has been able to spend quality time with the 2 siblings on a regular basis and dad has improved relationship with B’s siblings.
Feedback from Parent, “R (worker) has been brilliant for B and has done a great job for all of us. At times, R has taken both B & C on which has allowed me to spend 1:1 time with D as she loves shopping.” “B 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 learnedThere are still a significant number of parent/carer families who are not in receipt of any advice, support or respite. Demand for our service has continued to be consistent over the past year and there is still a lack of understanding or information available to inform families as to what they can access and how to access support.
The main learning which has been reinforced through our experience is that it is not necessarily the amount of respite that is important it is the timing, respite needs to be available at the right time! By putting parents/carers in charge of their support they are choosing to use it in a way that gives maximum benefit and often on many levels, not only does the child with disabilities benefit through having quality 1:1 time with a workers/volunteer and engage in activity they enjoy on a regular basis but siblings are benefiting. Relationships between parents/carers and parents/carers and siblings all benefit too. Families are able to have more quality time together and separately.
Whilst there it is a challenge to deliver a service that is time limited it does help encourage the family to focus on sustainability and prepare for the future whether to apply for SDS, continue to attend activity they enjoy together or separately etc. It encourages them feel more in control and directing their service to meet their needs. Applying for SDS continues to be a long process for many families and, despite the Section 23 assessment carried out, there still appears to be a variety in the level of SDS funding awarded.
As an organisation the benefits of Better Breaks funding has been knowing clearly who we are working with (those not in receipt of other services) being able to encourage families to apply for SDS and access other services and networks appropriate to their needs, to streamline our processes and focus on maximising our efforts on direct delivery and the satisfaction of seeing first hand the positive impact and benefit the service has as parents and carers, siblings and children with disabilities recharge, flourish and grow in confidence.