Circles of Influence Model:
When considering how a person can influence, we looked at the circles of influence model. These circles are interconnected, and all affect each other. With better understanding of a person’s experiences, preferences, and views (the middle circle), decisions can be based on this which affect their daily life and the organisations and services that support them. Taking this approach with a number of individuals we can start to identify themes which have a bearing on policies, guidance and legislation which affect systemic change.
If engagement is taking place to find out a person’s experiences, preferences or views about something, then it is important that what is learnt actually translates into real change and influence.This impact could just be direct for that person, such as what activity they participate in that day, or what clothes they want to wear. But it can also be wider and benefit more than just that one individual.
A lot of the time due to being assessed as having a lack of mental capacity, decisions are made without the young person’s input. A lot of the time the decisions that are made by professionals are blanketed ones and made for budgetary reasons and not in the young person’s best interests. Each year during the annual review for EHCP process, the young person is asked their views and also their parents. Teachers and parents put a lot of time and effort into trying to compile as accurate and meaningful portrayal of the young person’s views as possible but largely they are ignored by the local authorities who seem to make decisions not in the young person’s best interests but in the best interests of budgets. We have had battle upon battle with our local authority and their therapy services about this. Local authority decision makers don’t attend annual reviews or even meet the young person whose lives they are making decisions about, despite being encouraged to do so. On a day-to-day level my daughter is encouraged to make choices at college by using her communication system like what food she wants to eat, what activities she wants to do, say how she is feeling. She has absolutely no opportunities at all to be consulted on a higher level i.e government. – Family Carer
Hydrotherapy Pool Case Study:
After carrying out various home and college visits to the young people, and telephone and video calls to family carers, we started to plan our first engagement day with 3 young people through Demelza who joined us for the first session. Prior to the activity day – which we called ‘exploring experiences’, we recorded key observable indicators through conversations with family carers and support circles, and through observations at the prior home and college visits. These observable indicators would mean that we could react to signs of distress or discomfort and ensure it is in the best interest of the young person to take part in the activity we have planned, so long as the observable indicators were positive. We planned a group hydrotherapy session, something we learnt from family carers is an activity that all the young people seem to enjoy when they have accessed it previously. Typically, when accessing the hydro pool, the young person would be in the pool alone supported by a family member or carer. We wanted to explore young people’s responses and reactions to engaging in this experience with peers and young people of a similar age being in the pool with them and interacting in games together. Whilst apprehensive initially, it was felt by family carers this was a good opportunity to try something new and in an environment that we knew typically provided a positive meaningful activity for young people.
We were fortunate enough to be able to do a hydrotherapy session with Fenton and all his peers in the pool, which just doesn’t happen anywhere public because they’re just not able to facilitate our young people’s needs. And for him to be able to get in a pool with no equipment around him, to be with all his peers was a bit of a breathtaking moment because it was completely new to all of them, but it was such a success. They were all so happy, all interacting, smiling at each other, and it was just amazing, absolutely perfect. – Family Carer
The first session appeared to have been enjoyed by everyone who participated. The interactions between the young people were very intense, more so than we had seen previously in any other observations or activities. The familiarity of the environment, the weightlessness of the pool and the opportunity to interact in a close proximity with other young people appeared to be a wholly positive experience for the young people involved.
I’ve never really seen that with Fenton. To have that freedom to just be them, as young people without their disability, without everything else that goes with their daily lives. I can’t even put a price on it or a word for it. – Family Carer
Owing to the positive reactions from this first session we planned a further hydro pool session and recalled our activity day in an exploratory ‘Story Sharing’ activity. This involved the young people contributing to retelling the events that happened during the hydro pool sessions in a multi-sensory way including through sound buttons, smell, sounds and touch.
All the family carers, as well as the Demelza staff, felt that after experiencing the group hydro sessions, it highlighted the importance and need for more opportunities to interact socially with other young people. We spoke about the lack of opportunities for interacting with other young people in a meaningful way. The positive impact of the group hydrotherapy session has influenced a change within Demelza as an organisation in that they now run weekly group hydro sessions that can be pre-booked by family carers so that young people can enjoy a swimming session with their friends in a safe, accessible environment. Previous practice was that the hydro bookings were used by one young person/carer at a time. It was clear there was a real need for this, as the group sessions were offered to the 18–24-year group and were fully booked within a few weeks.
I think if Taylor didn’t come into Fenton’s life, I don’t think he would have ever got the opportunities to do what he’s done. I don’t even think Demelza would have probably thought about a transition swim if it hadn’t been instigated by the project in the 1st place. So, I don’t think he’d have had the opportunity to do what he did and make the friends that he’s made.And the experiences he’s had of swimming with the young lady that he really likes and playing with her in the pool and having a hug from her and things like that. He never would have experienced that. I know he wouldn’t have done it because there was no way to facilitate that. – Family Carer
What a fantastic example of self-advocacy– Marsh Stitchman, Director of advocacy organisation Lewisham Speaking Up.