Camphill Village Trust (CVT) is a national charity supporting adults with learning disabilities to live as independently as possible in their homes within community settings. Providing a wide range of supported skills-development activities, which are open to people living both within, and external to, our community settings. The activities provide opportunities for people to develop vocational and life skills, as well as having therapeutic benefits.
In 2015, CVT began working with Changing Our Lives , an independent, rights-based organisation. The aim was to introduce a ‘Quality of Life’ (QOL) review approach into CVT settings. This approach is led by people who use the services (‘reviewers’) who visit people in communities other than their own. The reviewers spend time looking at how people are supported to have those life experiences we all recognise as part of ‘ordinary’ life. The result is a comprehensive review based on the QOL standards. These reviews include recommendations to improve outcomes as well as the way our support enables people to live as independently as possible, contributing to society as equal citizens.
The QOL review approach is consistent with a wider commitment across the charity to engage the people we support co-productively. The QOL review programme involves people with disabilities developing different skills and taking ownership and increased responsibility over what they would like to achieve. It also ensures that people are having real influence over how they interact with and contribute to their community.
At the core of the Quality of Life programme are the partnerships built between the reviewer and their partner within each review team. The reviewer is the person with lived experience and it is their role to lead the whole process. They are supported by a partner, usually a support worker who knows the reviewer well. The role of the partner is to take notes when requested, help to construct the report following the review and ensure that the reviewer has everything they need.
The programme aims to support reviewers to develop the skills to recognise and gather facts, listen to and balance opinions and gain a deeper understanding of what will be a positive outcome for every person. This process of gathering review ‘evidence’ is done through speaking with people, observation of interactions, awareness of environmental factors (especially when visiting people in their own homes) and the ability to think about and then ask the right questions. The reviewers develop their own listening skills, sense of empathy and ability to read body language, as well as increasing their understanding of how people can express their emotions in different ways and what this may mean.
It is also important for the reviewers to recognise when something is to be treated as confidential, what rights people have and how to ensure that people feel safe and not overwhelmed or intimidated. The review teams know when they need to alert someone, and who this should be, if they are concerned about someone’s wellbeing or that something is not right.
These skills do not come easily and need to be developed and encouraged. The programme is underpinned by a comprehensive training plan. The initial training is two days. It challenges and inspires the prospective review teams to trust their instinct and experience, and recognise their own abilities. This is followed up with additional training days once they have undertaken their first review. The reviewers are encouraged to reflect on their own practice and identify their own skills and abilities, whilst also looking at areas that they need to work on for their own personal development.
Some reflections from reviewers include:
- ‘The opportunity to be a reviewer has filled me with confidence and self-worth.’
- ‘I feel I can inspire others to achieve their goals.’
- ‘It does not matter what your abilities are, you are seen as an individual person in your own right.’
Perhaps the most rewarding aspect of any review is when the recommendations result in actions that improve the quality of life for others.
Some of the developments we have seen include:
- Changes to accommodation to enable increased independence.
- Increased access to different employment opportunities.
- Changes to support delivery method and timings, reducing dependency on paid support.
- Improved accessibility throughout the community for people with physical disabilities.
The work that the review teams have undertaken so far is summarised by Jayne Leeson (MBE), Chief Executive of Changing Our Lives. She comments, ‘The CVT Quality of Life reviewers take a rights-based approach to their work, arguing all disabled people have a right to an ‘ordinary life’, where they decide who supports them, where they live, who they live with… in short, how they live their life. The Quality of Life reviewers are championing these rights, exposing myths and, in many cases, finding some of the most genuine and positive interactions between people with learning disabilities and staff that we have seen in a long time. They really are making a difference.’
The most exciting prospect for CVT is that this is just the beginning. New opportunities continue to open up for people we support to be involved with and influence the delivery of the charity’s services. The QOL reviews are directly influencing CVT community development plans and, at a wider level, strategic planning.
To ensure that this project continues to grow, the new role of a Quality of Life ambassador has been created. These are people with learning difficulties who take responsibility for ensuring that reviews and reports are shared, actions are recorded, and outcomes are monitored.
Recognition of the work of the CVT Quality of Life teams culminated in winning the 3rd Sector Care Awards Citizenship Award in December 2017. Huw John, CVT Chief Executive said, ‘This award is a reward for the hard work which teams from all our communities have put in over the last twelve months. Thank you to all of them. It represents a significant change in how we review quality and further strengthens our resolve to enable the people we support to have a stronger voice in the charity’s direction and governance.’
The members of the review team say that receiving the award has given them even more confidence and enthusiasm for doing more reviews, saying, ‘Knowing that other people respect our work makes us really happy and proud.’ The foundations have been built for a positive future.
With thanks to our supporters