Could building a ‘Team around the Person’ be the real way towards being genuinely person centred?
Person-centred care has been widely adopted throughout the UK adult social care sector. It’s an approach to supporting people according to their individual needs, learning styles and abilities with the goal of enabling them to live a more independent life. It is generally accepted to lead to better outcomes and satisfaction, but how does it work in practice?
Mobilise recently led an extensive stakeholder engagement for a charity that operates in Manchester and London providing supported living for adults with learning disabilities. The engagement process uncovered many challenges around the practice of person-centred care and provided useful insights for organisations throughout the sector. We spoke to parents, staff, residents and volunteers, enabling us to better understand all perspectives. Frustration was expressed by families, with parents talking about a lack of communication from staff, and staff also feeling the organisation was suffering from significant communication issues that too often led to unnecessary escalation. As the work developed, we started to wonder whether communication was a presenting issue, perhaps just a symptom of deeper, more underlying challenges.
We found a significant mismatch in understanding and expectations of the respective roles of each other – parents, staff and supported living adults. Our discussions revealed that, for staff, ‘person centred’ had become a shorthand for a kind of duty to maintain the independence of members at all costs. However, in practice, this was sometimes leading to distancing – or potentially even alienating – of parents and families who have valuable knowledge and experience to contribute.
The challenge of how to maintain independence for supported living adults whilst working in closer partnership with their families is subtle. How involved should parents be? Do adults with learning disabilities want their families to have input into decisions about their lives? How do we measure capability and understand the balance between wants and needs around a parent’s ongoing involvement? How should staff respond to families when the adult child is capable and prefers not to have parents know details of their personal lives? These are all difficult questions, yet a stronger partnership between adults with learning disabilities, their parents and the support staff, using their respective knowledge, skills and access to opportunities is surely a better way to support the life goals of each resident. This is even more important in some settings where turnover of front-line support staff can be high.
Parents and support staff should and could be on the same team building a strong team around every person with learning disabilities. To be truly person centred, organisations throughout the sector may need to take a step back and reconsider their definition and practice. Working in closer partnership with parents, according to the capabilities and wishes of adults with learning disabilities, is clearly nuanced and a challenging goal to achieve. But it is clear, that the potential rewards could be great – both for the development and independence of adults with learning disabilities, and for more harmonious learning disability charities!
Mobilise is now working to ensure a strategic plan and the right processes are in place so that this balance is created from the start. If this issue resonates with your organisation, please get in touch.
Micah Gold with Sara Borchard