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
Our work aimed to benefit the whole family, siblings, parents and carers. Children with disabilities were matched with a worker who they met up with weekly, usually on a Friday afternoon, Saturday or Sunday, for 3 -4 hours.
The activities varied from child to child, dependant on their individual interests and took place in the family home, out and about in the local community and visiting places further afield.
The timing of the sessions varied as we explored with the family how they too would benefit and how they wanted to spend their respite time - be it parents and siblings spending time together, time for parents to spend time as a couple or/and for parent/carers to do something for themselves that recharged their batteries.
Activities took place at the weekends as this was when families felt they would benefit most and children were less stressed and tired than through the week after a day at school.
Because activities mainly took place outside the home parent/carers could choose to spend time at home for example, having an uninterrupted bath or reading a book or they could go out to places or activities that they enjoyed themselves. Parents/carers could vary how they spent their respite week to week and were reassured that their child was happy, safe and enjoying their time with their worker.
Over half of all families who benefited from the project had made a self referral, with other families being referred by other voluntary and statutory agencies, schools, health visitors etc .
The range & diversity of families accessing the service, the nature of the activities undertaken and the age range of children and young people supported fitted with Better Breaks priorities 2 to 6. As our service is short term ( 6 - 9 months) we did not address the needs of children with complex needs who required long term support.
The success of the project was that we listened carefully and encouraged families to think about how to maximise our input so that everyone would get maximum benefit. Identifying outcomes such as improving confidence, social skills and going to new places etc helped keep the sessions focused on the child.
What Firsthand Lothian has learned
The project has continued to make us aware of the needs of families who are not accessing other much needed support. We need to continue to seek other routes into BME families and families for whom English is not their first language. We have noted that these are families who are often more isolated, not accessing mainstream services and not receiving support from family or friends.
Reaching new families and encouraging self referrals is key to ensuring that parent/carers are not struggling alone and not knowing what is available and/or how to access. Through promoting the project at local community venues and engaging with local community groups we are more likely to reach other workers/ volunteers who are more likely to be aware of more isolated families and encourage them to make contact and discuss support available in the first instance.
Finding other sources of funding for core and delivery costs continues to be a challenge. Over the past year there seems to be less funding available from Grants and Trusts and our success rate of securing new funding has reduced in the past year with many funder's telling us they are receiving 10 to 20% more applications than normal and have less funds to distribute due to falling financial markets and performance of investments.
How Firsthand Lothian has benefitted from the funding
Better Breaks funding has helped us further develop and hone our service delivery and respond to the changing needs of families and children with disabilities. We are able to attract staff and volunteers who are interested in working with children with disabilities including students who are looking to get hands on experience which will help them in their chosen career. This year we were able to offer Community Based Placements to 2 students from Queen Margaret University who are studying Education. It was useful for their learning to meet families and get a greater understanding of how home life and school impact on each other and children. Positively as a direct result of our Better Breaks funding we have successfully secured further funding for Time 4 Mum. This project was developed in response to noting that some Mums had become all consumed in their caring role and did not know where to start when asked what they liked to do for themselves during their respite time. We have recruited and trained volunteers who are matched with mums for up to 3 months and who will go with Mum to explore and try out new or long forgotten activities and classes. Mums are accessing swimming, cooking classes, art classes etc - all of which helps them develop a network of friends with similar interests out of the family home and helps them feel less isolated and more connected. The Parent and Carer Group and the Closed Parent and Carer Facebook page has also developed as a result of feedback from families who have received the Better Breaks funded service. The group meets monthly and parents share experience and knowledge and support each other. As a group they have arranged a visit to Nordoff Robbins Music Therapy, had someone from the Speech, Language and Communication Company meet with them and were recently organising a trip to see the Scottish Parliament building. The Closed Facebook page is well used by parent/carers who cannot attend the meetings and we also encourage parent/carers who are waiting on a service to join it so that they do not feel they are on their own and can benefit from some on line peer support.
Children and young people with disabilities will have told us that they have enjoyed spending regular time with their worker and have gone to places they enjoyed, spent time with other children and young people and have had fun.
We tried hard to ensure we got the best match in terms or the worker and child - who we thought the child and parent/ carer would engage well with in terms of personalities and interests. The bond and trust established between worker and child enabled the worker to encourage the child to try new things and go to new places. Children were encouraged to come up with ideas of things they wanted to do / how they wanted to spend their time whilst the worker also made suggestions as to activities they might try out together or places they could visit. Activities varied and included staying locally and going the park or for woodland walks, going further afield on public transport to the beach, the city centre, the Botanic Gardens, Gorgie city farm, various museums as well as soft play, trampoline centre and, particularly when the weather was not so good, staying home and baking, doing arts and crafts, singing, dancing, reading stories etc
The family comprised of Dad and Andrew who was 4 years old and had only recently come to live with dad full time. Andrew no longer has contact with his Mum. Andrew has been diagnosed with ATRX syndrome, a rare condition that can cause physical and learning disabilities. The service was requested so that we could provide support and respite for Dad, help Andrew develop strong relationships with another adult and help Andrew to access and experience a range of new activities. Starting in the family home initially the worker spent some time getting to know Dad and Andrew and together they all went on trips and did activities which helped the worker understand Andrew’s personality and learn any necessary techniques or adaptions that she might need to make when out with him on her own. In addition this time together enabled Dad and Andrew time to get know the worker better and for them to develop trust. Once the relationships were established the worker took Andrew out every week to engage in a wide variety of activities including trips on the bus, tram, going to the park, vising South Queensferry to see the 3 Forth Bridges, to the beach etc. Dad reported that Andrew and his worker did lots of fun things together Andrew really looked forward to his time with her. Dad enjoyed his respite doing different things – sometimes doing personal admin, catching up with work, visiting friends, going out on walks etc. The service provided Dad with regular respite which he could spend as he wanted each week and Dad reported that the service had been a really positive experience Andrew and that now both father and son were more open to accepting help from other adults – family and friends.
Parents will be more aware of what helps them feel less stressed and more able to cope in their role. Children and their parents will look forward to and enjoy the respite time provided by the worker. Children will have enjoyed new experiences with their worker and have had fun.
As the project focused on delivering positive change for the whole family - child with disability, siblings, parents and carers this outcome was achieved. Parents were encouraged to think about what activities they enjoyed or used to enjoy doing, what other supports they required to help them feel less stressed and how best to spend their respite so that they felt recharged for longer than just the few hours away from their caring role. Key to this was getting parents to think about themselves and their needs without feeling guilty. Seeing how their child responded to their worker and that they looked forward to the sessions helped reassure parents that it was okay to take time out for themselves as their child looked forward to and benefited from time away from them as well. Hearing their child talk about what they were going to do and what they had done with their worker confirmed along with the timing of sessions and not having to travel to an activity was an added bonus
Mum has 3 children. Luke (7) who has a global developmental delay and is currently being screened for Autism. Henry (3) who has a speech and language delay and is also currently being screened for Autism. They also have Laura (6 months). Mum is alone at home managing the children. Mum reported that she finds it extremely difficult to manage with Henry’s challenging behaviour. Henry will scratch, bite and throw toys when he becomes frustrated and Mum experiences low mood and increased anxiety because of all this. They applied for support so that Mum could try to use some alone time to focus on her own mental health. Mum said that Henry really struggles to really connect with new adults. The worker provided stimulating play activities for Henry bringing sensory activities (e.g. Jelly, colourful spaghetti and colourful rice) to sessions which gave Mum new ideas about things that Henry liked to do. At first Henry wouldn’t really want to connect with the worker, however after a few sessions he began to get excited when she arrived. Henry now opens the door for the worker and runs through to the living room and gets out the messy mat so they can get started on the activity. Mum expressed how happy she was to see him get all excited for the activity and how she was pleased that he was now comfortable around the worker. From the very start Mum expressed her inability to trust other adults with her children, especially Henry. The worker acknowledged this and took it one step at a time, never pushing Mum out of her comfort zone. The sessions started with Mum staying in the room while the worker engaged with Henry. As Mum became more and more comfortable around the worker she began to go into the other room until the worker was able to take Henry out into the garden to play for an hour without Mum being with them. Eventually Mum allowed the worker to stay with both Henry and Laura while she could go and do other things around the house (i.e. take a bath). Mum said “it is nice to be able to sit down and take care of myself without the worry about what the children are doing”. Mum enjoyed being able to talk about her week, particularly the difficulties she and Henry had faced. Mum and the worker chatted about the process applying for SDS for Henry, her concern with Henry’s sleep as he gets up several times during the night and the worker helped Mum to complete the forms. The worker also offered suggestions around setting and maintaining boundaries which would make things easier for her to manage her children.
Parents and carers will have regular time to themselves on a weekly basis which they can spend doing things they enjoy whilst confident their child with disabilities is being cared for and having fun.
This outcomes was fully achieved as parents and carers needs were taken into account when looking at what, when and where sessions took place. For parents with more than one child with a disability we provided 2 workers or a worker and volunteer so that the parent could enjoy complete respite and have time to do something for themselves. Because the sessions were flexible we could fit in with classes or activities that parents wanted to attend and, if it made more sense and maximised the respite time for parents, we could meet or return their child to the venue rather than always starting and ending in the family home. Key to success was that parents felt reassured that they child was having fun and was looking forward to the time they spent with their worker. Knowing their child was happy and cared for meant they could wholly enjoy their regular respite
Mum and Dad have a 5 year old boy called Alan who has a severe vision impairment, epilepsy and profound developmental delay in a range of areas. He has not developed speech and finds it extremely difficult to communicate. Alan can get very distressed because of this and may attempt to self-harm (hitting himself). He receives support from various professionals to help with his development including Speech therapy, occupational therapy and additional support for learning in nursery. The family are quite isolated and have little support/interaction with family or friends because their family all live in China. The family applied for support to help with Alan’s development and improve his quality of life by helping to establish routines with him. The support will also help the parents have quality time together and to obtain necessary life skills including learning to drive so they can take Alan to school and back when he starts. The worker used the sessions to take Alan out on small walks around the neighbourhood and to the family garden. Alan needed a lot of encouragement to get outside but seemed to enjoy it a lot when got out. The worker helped Alan use his other senses - exploring different sounds and touches while out and about. In the last hour of every session, the worker helped Alan establish his routine by doing the same thing in the same order every week. For example, brushing teeth and getting ready for bed. The worker also spent short periods of time with Mum providing a listening ear and reassurance when needed. Mum and Dad thoroughly enjoyed having date night, which they said they hadn’t had since Alan was born 5 years ago. They came back from sessions very happy and appreciative of the service. Mum agreed that it was lovely respite for her especially as she is the main carer of Alan because Dad works. The service benefited Alan in a way that it allowed him to develop a trusting relationship with another adult and helped him understand his bedtime routine that little bit better. After a review it was agreed that the worker would be at home for Alan coming home from school as this would give Mum and Dad more time together. During the sessions the worker would stick to Alan’s usual routine which was very important for both him and his Mum. Some sessions were spent taking Alan out into the garden on his swing, going for walks in the local neighbourhood etc. The worker was very mindful of his sensory impairment and used the sessions to try and help Alan explore his senses by introducing different toys and sensory equipment, including the piano which Alan loved hearing and playing. Mum and Dad enjoyed their time together without having to worry about Alan and were always very appreciative of the service on their return saying “there is simply no other service out there that can help them take care of Alan that will allow them some respite”.
Parents /carers will be more aware of other supports / agencies appropriate to their needs and how to access them ( including SDS ) Parents / carers will have more confidence to ask for the support and help that they need. Parents / carers will feel less isolated and more connected to others
Through the positive relationship that parent/ carers established with the Family Support Coordinator and their worker, parent/ carers felt more able to be open about their situation and could share their concerns. In turn this meant that the worker could provide relevant information appropriate to their particular needs and encourage and support them to access agencies and services that could provide the help and advice they required. This included encouraging parents to apply for Self Directed Support, access specialist services etc . Realising that it is okay to ask for help and having someone acknowledge that being a parent/carer role is challenging and difficult at times, parents recognised the benefits of getting the help that they needed -which could include more support from friends or family . Through accessing the Parent & Carer Group and talking with other parent/ carers, sharing experience and chatting etc, parents realised they were not alone.
Haley and Joe live at home with their Mum. Both children are autistic but this presents very differently for both. Haley is verbal, and can engage with activities for long periods of time however she get upset and frustrated and needs time to adjust and overcome her difficulties. Joe is non-verbal, and less able to engage in activities. He prefers alone time, but the right task can bring him into the group. Mum was looking for support so that she could have 1:1 time with each child, as well as time alone with other family members or friends. Initially both children were present at the weekly sessions enabling Mum to spend time with her elderly parents who needed additional support before going on to do activities of her own that recharged her batteries. Activities with the children were mainly in the home and included baking, painting, arts and crafts, playing on the trampoline, trains, Lego and so on. Whilst the worker tried to encourage the children to play outdoors or go to the park this was generally turned down by both children. Over time, Haley’s behaviour in sessions became a bit more distressed and it was agreed with Mum that it might be better if the support focused on Joe. This went really well and it seemed to be more fun for Joe. Mum enjoyed having 1:1 time with Haley and going to places such as the cinema, shopping trips, cafes etc The worker discussed additional services that were available for Mum, including Section 23 Assessments for both children and she was encouraged to pursue this and was awarded a care package for Joe which meant another organisation would collect Joe from school one day per week which provided on going respite for Mum