Carys’s story about growing up with Person Centred Planning (PCP)
Carys is a young woman with profound and multiple learning disabilities (PMLD). She has cerebral palsy, uses a wheelchair and needs total support in all aspects of daily life.
Carys is at college. Her interests include going out and meeting new people.
Carys’s family first heard about person centred planning (PCP) when Carys was 16 years old. At the time Carys was living at home and travelling to school every day in Southampton. Outside of school, she spent most of her time with her family and had few opportunities to go out with people of her own age or be involved in local activities.
Carys regularly went to stay at a residential respite unit but her family received no additional support at home. The situation at home had become so stressful that the family began to wonder whether they could cope much longer. They were also very worried about the future as Carys was due to leave school the following summer and they felt that the choices on offer were very limited. The plan for Carys’ future was to look for a residential home.
The family went to a meeting to find out more about person centred planning (PCP). They hoped it might be something that would open up some alternatives for Carys, although they were not optimistic as they had tried many things over the years. But the presenters at the meeting were enthusiastic about PCP so the family decided to give it a try.
At first they were not sure how to get started with PCP as it was difficult to grasp what they were supposed to be doing:
‘We realised that although we knew a lot about Carys and day-to-day living, we didn’t know what her dreams and wishes were. We thought it might be very difficult to find out’
The first step was for them to set up a circle meeting. They didn’t really know how to do this and who to ask to come. The PCP project which was supporting the family to develop Carys’s person centred plan suggested they have the meeting in a pub and write a letter to all the people who knew and cared about Carys to ask them if they would like to come along to a meeting. Carys’s family were really pleased at how many people turned up. Lots of people came and they all had good ideas about things Carys might like to do.
The PCP project also made suggestions about how to find out what sort of things Carys liked and from that what some of her dreams and wishes might be. The circle used some planning tools like PATHS and MAPS.
The circle identified that her main wishes were a regular social life with people of her own age, friends who greet her i.e. that she knew people who would say hello and chat to her when she was out and about, and more exciting and fun activities.
Since the first circle meeting Carys has been water skiing, joined the Gateway club and youth club in the next village, been on a float in the local carnival, been to the theatre and skiing at the dry ski slope.
Through the PCP Project Carys’s family also got suggestions about the Independent Living Fund, Direct Payments, homes and other useful initiatives and services. They made an application to the ILF to fund carers to provide support for Carys at home. Their application was successful.
However Cary’s family found it difficult to find someone to help who was young and would feel comfortable helping Carys to go to places where she would meet people of her own age. But the circle of support came up with the idea of re-wording the advert in order to emphasise Carys’s interests as a young person rather than her level of disability and high support needs. This advert attracted two young support workers who were willing and able to support Carys to make links with her peers. This has worked out brilliantly – Carys loves to see them and they enjoy seeing her. They regard her as a friend.
As well as a person centred plan, Carys’s family developed a health action plan (HAP) for Carys. Without these Carys’s family said she would not have gained her 3-year place at a specialist college focusing on communication and living skills which she really enjoys. She is going out and about, with support from people other than her parents, and meeting many new people.
Carys’s family says
‘Carys is now much happier and more relaxed and gets much more enjoyment form life. The whole family is less stressed. We are also much better informed about options and services. Personal centred planning has widened all our horizons - we now consider things we previously thought out of the question.’
