Who will manage their support when I can’t anymore?
A question, a concern, a fear even, that we come across quite a lot in the work we do is, ‘what will happen to my son or daughter when I am not here anymore’.
This question alone is an important and compelling reason to help someone gain greater independence outside of the direct outcomes and targets we are often set when asked to provide support. Overlooking or not asking what all the concerns and fears of parents and other family carers are is to miss some of the most important influences of independence itself.
Often a learning disability case study will concern itself with the story of the person directly receiving care and support by a professional organisation. This, however, is a short of the parents of someone we support.
Bob and Dawn are as resilient and resourceful as the day is long, experts in their respective fields of education and the law, they raised their two boys, both now adults, in Berkshire. They are also good company and pleasure to have met and to work with. However, when their Local Authority contacted us, it was not to work with them, it was to work for and support their 34-year-old son, Peter. He just happened to be living back at home at that time, but without them we could not have done our job the way he been able to.
Peter is very active, likes to be busy with something; he requires a lot of interaction. Not in itself unusual, in fact many of us would say the same of ourselves. However, Peter has a learning disability and requires a fair amount of support and guidance in many aspects of his day to day life.
This support is all managed and done by his parents with a range of help from professional people and organisations, such as ours. Of which many have come and gone at various stages throughout their lives. Over time Peter has been helped to move into various accommodation options that includes sharing a flat as well as sheltered living. Unfortunately, when these moves have not worked out, Peter usually moves back home with Mum and Dad whilst new arrangements are looked into. The support we provide to Peter is packed with Varity. We mainly support Peter with his volunteer work which ranges from gardening, farming looking after the grounds at a local museum of old motor vehicles. We also support Peter with social events, emotional support and decision making.
When we sat down and spoke with Bob and Dawn to ask them to let us know what they thought about the services we had provided they had some honest and good views. The most fantastic thing from our point of view was that they felt he was becoming more independent, a relief that they had not expected at first.
They put this down to not just the quality of the support workers he has, their flexibility but also their consistency. In the six months from when we began working for Peter, his mother told us that this has been the longest period without him ‘blowing up’, which in itself is strong indicator of where Peter has got to. He had also had a quite a number of poor or changing support workers over the years that had the negative effect of creating changing situations that did not help reduce ‘blowing up’ moments, and meant a lot of administration and new beginnings for Peter and his parents.
This quality and consistency of the support services that Peter makes use of has increased trust. Both in the relationship Peter has with his support workers and that of his parents in the support Peter received and what it means to all of them. That trust in turn has meant that Peter has become quite a lot more independent from his parents. Bob, who often works from his home office, said he could do so much more effectively, Dawn has bit more time for her work and for the first time in a very long time they are going to be able to go holiday, just the two of them. Past attempts had to be cancelled.
The strongest impact their words had on us that day though was when Dawn said that because of the way things are working out now, they are beginning to feel a little less worried about what will happen to Peter and the support he gets in the future.
There is still some way to go, but positive changes like these are experiences we hold on to dearly and we learn from them, especially how to take them across the rest of the services we provide.