0.2 Personalisation across the life course
This course’s focus is a broad one. We consider personalisation in the context of the very wide range of needs that people may have, related to, for example, their mental health, learning disabilities, substance misuse and long-term physical health problems. We also look at personalisation across the life course. In other words we are interested in the way that people of all ages and life stages benefit from being 'at the centre' whenever decisions are made about what support will work best for them.
Most of the course's content, including the principles of personalisation, and many of the debates about how mechanisms such as self-directed support should work, is equally relevant whether we are considering the needs of adults or children. However, there are some differences in how we think about personalisation in relation to children and adults.
Meet Sara and her family
Who do you think makes decisions in this family?
On the face of it, this is quite an easy question to answer. All the family - Sara, her mother and her grandparents - make decisions of one kind or another. But you will probably have identified that Lela and probably Samuel and Gita will be making some decisions for Sara. For example Lela probably decides where Sara lives and where she goes to school, and to varying degrees, will make day to day decisions about what she eats, or when she goes to bed. Sara will of course play a part in making these decisions too but Lela has legal as well as moral responsibilities, and rights, to make major decisions about her daughter's welfare. Samuel and Gita often look after Sara and so will be making decisions for her too. You know that Gita is sometimes reliant on help from her daughter and husband; does this also mean that they may be taking some decisions for her? We don't know the answer to this but can safely guess that, as in family, there will be continuing negotiations between family members about who makes what decisions for whom, and when.
Why is this important?
We said that personalisation is about people being active participants in selecting and shaping health, social care and other services. Being an 'active participant' implies that people have some capacity to decide what support and assistance they need and the power to take those decisions for themselves. Thinking about Sara and her family is a reminder that we cannot talk about personalisation without considering people's rights to take decisions for each other. This is especially important when we are talking about parents and children. The principles of personalisation are the same whether we are talking about children or adults, but the approach taken often has to be different. To take account of these differences some of this course's content is about both adults and children, and other sections are about just adults or just children.
Of course this neat division between adults and children isn't quite as straightforward as we make out here. Adults are legally able to make decisions about their own care and support, but are unlikely to make those choices without considering the views of, and consulting with, other people, such as close family members (which may of course include children). Some adults may also lack the capacity to make some decisions about their lives, and so require help to make decisions. As Sara grows up she will make more and more of her own decisions, and Lela's legal responsibilities, and rights to make decisions for her, will gradually decrease, but her perspective may well remain very significant to her (as may Sara's father if he is a significant person in her life). How this transition between childhood and adulthood happens in practice will also vary from child to child, and family to family. The course will address personalisation and decision making at different stages of the life course, from babies to young children, though the teenage years to adults of different ages.