Flexible Family Respite
A story by Firsthand Lothian
We provide home based support & respite for families with children with disabilities living within Edinburgh.
Staff & volunteers are matched with children and deliver regular sessions of respite, engaging children in appropriate play activity, encouraging and enabling them to access activities in their local community. Parents / carers can use their respite time to do something for themselves
What Flexible Family Respite did
We have delivered respite and support to 39 families over the past year/ We have recruited 12 staff and 12 volunteers who, once trained, were matched with children and their families. Our staff and volunteers come from a wide range of backgrounds and bring a good variety of skills, knowledge and life experience. We have recruited people specifically based on their core values and those who genuinely want to make a difference in their role.
Each of the 39 families were offered up to 80 hours of support and respite which was delivered in the family home and local community on a regular basis in sessions which were usually 3 to 4 hours in duration.
How each family used their respite and support was very variable. In some situations we cared for all of the children, the child with disability and their siblings. Other families felt they would benefit if we collected children from school , engage in outdoor activity at the local park, beach etc, or go with their child to places of interest across the city etc museums etc. Sessions took place in the main after school hours - evenings, weekends and Friday afternoons when the schools finished early.
Some families used the respite to enable the parent / carers to spend time with non disabled siblings, or spend time together as a couple and maintain their relationship and others used the time to take up a class, participate in an exercise class, spend time with friends, undertake study etc.
Referrals were received from a wide range of sources including other agencies, health visitors, self referrals etc. Families who were not receiving any other statutory input or support and those with few or no supports of their own were the priority for us when assessing and matching with a worker/ volunteer. The who
What Firsthand Lothian has learned
The fund has enabled us to work with families and help them take control of their respite and support - encouraging them to feel confident to ask for what they need and when they need it. This has been a change for many parents/ carers who have been so desperate for any level of support and respite that they would accept respite and support even if it didn't quite allow them to spend the time as they would have liked - as any respite is better than none at all.
The coordinator spent a lot of time at the assessment stage encouraging parents and their children to really consider what they wanted to do with their respite time and to ask for deliver - be it flexible and variable - if that was what they needed to achieve their goals and outcomes.
We have noted that by having a finite number of hours (in this case 80 hours per family) there are very few cancellations ( unless illness) and that parents / carers ensure that their support and respite is delivered at a time that enables them to gain maximum benefit. We encourage parents / carers to discuss directly with their worker any changes required so that the respite time is responsive and flexible and delivered at the right time.
The fund has enabled us to work with families who are struggling as they have no other services in place and do not know what is available to them. This has included families who are waiting for a diagnosis, families who have just received a diagnosis but have no other information and do not know what this means for them both in the present and the future.
We were surprised by the number of families who were not aware of Section 23 Assessment or how to access one, had not heard of SDS and generally did not about other supports and agencies that they could approach for support and guidance.
Having experience support and respite and been encouraged to think about and ask for what they need as a family, particularly in terms of when and frequency and flexibility of service delivery, some families now see the benefit of being confident to ask for what they need rather than passively accepting support and respite which does not really fully meet their needs and allow them to do what they want to do in their respite time.
One of the emerging trends for us which brings challenges in terms of staffing and volunteer availability is the increased number of families who are seeking support and respite on Friday afternoons and at weekends when the children are not at school.