Report 55: People not processes: the future of personalisation and independent living
Hopes and fears for the future
Some of my friends and I have had a really harrowing year because our local authority, like many others, has introduced a really draconian charging policy and some of us are going to be wiped off the agenda.Ann McFarlane
The clearest message to come out of the seminars was that service users and carers are very fearful about the future of their services and support. At times this made it difficult to focus on developing approaches for the future of personalisation because people were very concerned about their day-to-day lives.
Where people had been seeing good practice they thought this was beginning to slip back. There was particular concern that the voices being heard at this event and others like it are the tip of the iceberg and that there will be many service users and carers who are losing services and not able to complain.
Working together to do more with less
Jane Campbell recognised that the future is going to be difficult with resources becoming much more limited. She thinks the future will mean having to do more with less money and doing things more creatively, and this will make working together more important. She argued that involvement should be the last thing that service providers should cut back and it will be more important than ever to involve users and carers to ensure that the resources that are available are spent on the right things.
Jane particularly highlighted Article 19 of the UN Convention on the Rights of Disabled People (which states that people have a right to live in the community) as a useful tool for challenging local authority cut backs to services.
Participants think that it is important for local authorities to involve service users and carers in the difficult decisions they need to make around finances. They said that local authorities need to understand that there is actually more value for money through personalisation than traditional services. This is because users are generally happier and have better quality of life if they can choose their care package, as was illustrated by the example Michelle Parry gave of the family who were able to buy a hot tub for their son.
Michelle went on to say in her presentation that the current situation as being like trying to fit a jet engine to an old, propeller driven bi-plane. She believes that we need to move away from the old model of social care for personalisation to achieve its full potential.
As well the concern about shrinking financial resources, people thought that budget cuts were also being used as an ‘excuse’ for not giving people greater control over their support and lives. In particular, participants thought this is being used to unnecessarily add to growing list of restrictions on how people can use their personal budgets.
Keeping the person at the centre
Despite the weight of these doubts and fears about the future, participants also had clear ideas about steps that need to be taken to try to ensure a positive future for personalisation.
The fundamental message was the need move back to the ethos of independent living. There was recognition that personalisation had helped many organisations develop and improve their services but there was a feeling that service or local authority driven forms of personalisation had taken over from the approaches developed by disabled people in the independent living movement which had brought in direct payments. People wanted to see a move back to this ethos in order to ensure that the choice and control of users and carers at the heart of services and a social model approach.
This would also mean taking the emphasis away from processes and mechanisms and focusing on what personalisation should be about – the human, emotional and political dimensions - the whole person. This could be called the ‘spirit’ of personalisation which is found in the people, not in the processes.
At the individual/family level this would translate into a focus on outcomes. Service providers also need to ensure people are given sufficient support to operate direct payments and personal budgets without experiencing problems. People also need to have appropriate choices that take account of their background, culture and locality and there needs to be greater recognition of the way people’s needs can change over time.
Participants saw the current government target of all service users on a personal budget by 2013 as overly ambitious. Some suggested this could not be delivered within the time allowed as it involves such a major culture change. Some participants suggested the target might be achieved on paper but the reality would be very different. They also questioned how this target relates to the government’s localism agenda.
Policy and practice
Participants identified specific measures that need to be taken by national and local government, policy makers, service providers and practitioners need to take to deliver real improvements:
- Holistic approach – the government needs to replace the current system with a holistic approach that addresses all aspects of people’s lives. This needs to be supported with overarching legislation that sets out a shared vision and understanding of what personalisation should mean.
- Pool and coordinate resources - bring together current funding that is divided between the Department of Health, Department for Work and Pensions and Department for Education in order to reduce bureaucracy. It was suggested that the Office of Disability Issues could take on a coordination role for this new approach to budgeting for personalisation.
- Better and closer collaboration between national and local policy makers and service providers.
- Develop clear and independent evidence of what is and is not working in relation to personalisation
- Develop co-production with service user and carer organisations on the basis of equality, mutual respect for expertise and powersharing.
The final point was seen as a key part of a successful approach to personalisation. However, at present co-production is often seen as too much of a risk by service providers and there need to be changes in attitudes so a co-production approach becomes embedded in organisations’ culture.
Odi Oquosa particularly highlighted the importance of funding for BME organisations, though noted that in many cases this is being cut back at present. He also pointed out the need for specific research to develop a better understanding of the effectiveness of personalisation for service users and carers from BME communities. He also suggested that BME service providers should be supported to find practical ways of involving families and communities in delivering personalisation.
What service users and carers need to do
Participants also identified important actions that service users and carers need to take to support the progress of personalisation. They felt that service users need to be inspired to have confidence in themselves. Parents with disabled children should work with disabled people as allies as they would benefit from their experiences.
Service users and carers need to work together and form good support networks so they can influence policy makers, commissioners and others involved in service provision. This could be supported by a network of champions who will work to share knowledge and good practice. Service user/disabled people’s organisations could play a key role in this.
For all the problems which were discussed over the course of the seminars there were also clear signs of hope. Jane Campbell said at the start of the seminars:
Now the genie is out of the bottle, there will always be people who understand and acknowledge the fact that people who use services are the experts of their own situation. Because there are too many of us doing it.
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