Changing Our Lives work with people with learning disabilities and autistic people in hospital settings across the country.
The average length of stay for these individuals is around five years, however some people have remained in hospital for over fifty years.
Person Centred Planning
Working alongside individuals trapped in hospitals and those close to them, we facilitate the creation of a ‘person centred plan’, which is used to inform other people about the individual and the kind of life they want to lead. This plan is then used to shape support and services when the individual leaves the hospital. We often find individuals who are trapped in hospitals are not really known by the people who support them and the picture of them presented of them in written documents such as care plans does not reflect the real person. They are labelled as ‘complex’, ‘violent’ and are invisible behind a wall of diagnoses.
However, from our experience of over 20 years, we know that with the right support, individuals who have lived for years in locked hospitals, can and do live in their own homes very successfully. There is no doubt that this takes time, thoughtful planning and supportive and creative professionals, working alongside the individual and family, but it is achievable. Evidence from our work shows that people thrive living in their own homes, making their own daily choices, forging friendships and relationships if this is their choice and creating their own version of an ordinary life.
As well as facilitating a person centred plan, we work alongside the individual to advocate for them: this is to ensure that their plan is put into practice, and that they leave hospital with adequate support and a team recruited to meet their needs and wishes. The development of the relationship between ourselves and the individual who is living in a locked hospital is vitally important to us, as many individuals take time to trust people and time to get to know. Wherever possible, we remain working alongside the individual until several months after they have left the hospital.
This is our preferred approach as we know that there are many stresses and situations to overcome in the first few months of leaving an institution and if the right, timely support is not in place, an individual can find themselves returning to the hospital system. We also work closely with families, many of whom struggle to navigate the hospital system, feel displaced by the system, or feel removed from the life of the person in hospital. Including families in advocacy and planning is vitally important.
Working as a rights based advocate alongside people who are stripped of their most basic human rights is a challenging role. We are often a lone voice, fighting against systems that don’t work for people who have been labelled as ‘challenging’ and ‘dangerous’, dehumanised by the very institutions that are meant to support them. In Camden, our work to achieve the release of Kasibba, a Black African woman kept in long-term segregation for a quarter of a century, was complemented by working alongside a multidisciplinary social work team. This work, which gained national recognition, is reflective of the quality and tenacity of all our person-centred planning and advocacy work.