Report 55: People not processes: the future of personalisation and independent living
What we mean by personalisation
It’s about being me.Workshop participant
One of the key aims of the seminar was to consider exactly what is meant by the term personalisation. This became the key theme of the first day’s examination of ‘where we are now’ with personalisation.
The importance of this issue was highlighted at the seminars, where participants expressed concern that each local authority has a different definition of personalisation and this means there are wide variations in how it is put into practice.
In looking at ‘where we are now’, Baroness Jane Campbell’s presentation gave an account of how we have arrived at personalisation. She described how a group of disabled people in the 1970s decided to leave the ‘disabling services’ of residential care and live in the community with control over the money that was used to pay for their support services. Their success was repeated by others and this became the independent living movement and led to direct payments. Personalisation has grown from independent living and direct payments and we are now in a position, ‘where growing numbers of people and their families are leading and defining their own support services, rather than simply consuming them.’
Another speaker, Ann McFarlane, summed up her view of personalisation as being, ‘about all of us and all our lives. It’s not about social care alone, or medical support. It sits in every local authority directorate, whether it’s parks and gardens, roads – whatever it is, it affects you and it affects me.’
The question ‘What does personalisation mean for you?’ was the key discussion point. One workshop group produced a joint statement of what personalisation meant to them:
- Personalisation for me is about: flexibility, choice and control.
- To make it work for me, it needs: peer support, information and advice
- If it’s working well, it is: liberating with positive outcomes.
- I will be included and valued.
- No decision about me, without me.
Other discussions highlighted several key characteristics of personalisation:
- freedom, choice and control – being an individual and being able to make your own decisions
- the focus is on the person rather than the service – delivering quality of life and happiness and enabling you to live on your own terms
- being valued as a person
- keeping people in the mainstream and in the community, being included/integrated and being citizens on equal terms
- ‘nobody tells you what to do’
- liberation – including being able to take risks and make mistakes
- being listened to and heard.
A key point to emerge was that personalisation should be about the principles of independent living as developed by disabled people. However, there was a feeling that personalisation is now being based on certain understandings that do not include the principles of independent living. It was suggested that more should have been done to make direct payments/independent living more widely available rather than spending lots of money bringing a new approach.
Another suggestion was that personalisation should include recognition of the need for low level support and how this saves money in the long run as it stops people developing higher levels of need. At the moment, problems with assessment processes and eligibility criteria mean people in this position are often left vulnerable. It is also unclear how much personal budgets can be used in a preventative way that reduces the need for more support as people’s circumstances change.
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- SCIE Report 55: People not processes: the future of personalisation and independent living
- SCIE Report 55: Easy read: People not processes: the future of personalisation and independent living