Personalised care: Disabled people taking charge of their lives

Rights to independence

The success of moves towards a more personalised care system requires giving back to service users rights and freedoms, writes Simon Duffy.

Disabled people often find that to obtain support they are forced into a dependent relationship with public services. When this happens it is all too easy for people to find themselves in situations where ordinary rights go missing: people lose their homes, privacy and dignity; control of who helps them or even who comes through their front door. Too often people using services find they are socially isolated and cut off from ordinary experiences of work, play and contribution.

For this reason the battle for independent living has often focused on the reform of health and social services. One key victory was the Direct Payments Act 1996, which ensured that councils would not be punished for giving disabled people control of their funding support. Today 50,000 people use direct payments with thousands taking them up each year.

Research shows two things: first, people’s experience is broadly positive and life is seen as much better; second, there are deep institutional barriers to successful implementation of direct payments. Direct payments work but they are often hampered by wider management and funding systems.

In 2003, In Control was set up as a social enterprise to explore how to co-produce a better system for everyone who needs social care ­ this system was called self-directed support. In this system everyone is given a clear entitlement to support, sometimes called a personal budget. People can then decide how their budget is spent and how much control they want to take over that budget.

Self-directed support is not a different system; instead it is a system that has been designed to provide the right context for direct payments. Early research shows that direct payments numbers have grown radically within self-directed support. This may be because it lets people have more opportunity to develop their own plans and use their funding more flexibly.

Today In Control continues to work as a social enterprise, supporting networks to build better systems and supports. It brings together disabled people and families who want to live independently, along with those leaders within councils and Association of Directors of Adult Social Services who want to design a more personalised and modern social care system.

Dr Simon Duffy, chief executive of In Control Partnerships


 
The long road to freedom

Putting People First is the culminaton of the long journey to personalised care, and it may well overhaul staff and services, writes Simon Stevens

Over the past 15 years or so social care has been on a journey to personalisation. As an adult, I always received an assessment and some level of service under community care guidance.

Direct payments were the next step in personalisation and was the first time service users had some say in social care policy and a direct say in how their personal assistance is managed. But direct payments were a good idea that had to be implemented within a rigid and inflexible system and the level of personalisation was watered down bureaucracy.

The individualised budget pilots were an opportunity for councils to start with a blanker canvas and spend more time with service users to understand their needs and desires.

Metaphorically it has been like an away day for social workers and service users ­ a team building session if you like. The apparent success of the pilots has led to Putting People First.

Putting People First is a very exciting opportunity to radically improve adult social care for the 21st century and to finally use some common sense to offer service users with the level of personal assistance they require in a manner that best suits them. It also could radically change the relationship between social workers and service users as they learn to work in partnership.

But, Putting People First will also create a whole new set of problems.

First, this new wave of excitement does not mean that social workers will be handing out blank cheques to service users. Assessments will still be needed and there will be debate on the type of assessments that will be used. For example, you have In Control’s self-assessment model that differs markedly from the outcome-focused assessment model used by Coventry Council and others. On reflection, I am personally in favour of outcome-focused assessments as I believe it is more concrete and provides more long term stability.

For some social workers, the revolution I predicted years ago is now happening and the attitude that service users should be seen and not heard is no longer welcome.

It is not going to be easy to change everyone to this new way of working.

Let’s be under no illusions ­ social work staff are going to have to adapt and change their roles or they will have to find a new career.

Simon Stevens is chief executive of Enable Enterprises 

Related article

Direct payments and personalised care