Protection and participation: Balancing risks, rights and responsibility

When we talk about risk, our view is often predetermined by labels. Terms such as frail, elderly, vulnerable and disabled generally bring out a caring and sympathetic response. This indicates our decision-making process is often influenced by emotion, rather than logic. How then do we balance the risks, rights and responsibilities of disabled people, whether young or old, in order to treat them as citizens?

As a black disabled man who receives care and support, I have first-hand experience of accessing primary care, acute care and mental health services. I work full time, chair the Think Local Act Personal (TLAP) board, organise my own care and still find time to attend matches at Birmingham City Football Club.

We all view risk differently – what seems highly risky to one person is an everyday activity to another. We sometimes assume that as people get older they should try to avoid putting themselves at too much risk. However by being over cautious we can stop some people who may have disabilities doing the things they want.

It is important to remember that we cannot balance the risks, rights and responsibilities of people in an abstract sense. Each situation is different and we need to work with people in their own context, despite the complexities, and treat them as individuals.

Having open communication is vital. Providing information, advice and support to find out what matters, allows the person to express their own needs and wants, and to feel they are able to live a normal life.

There should be risk enablement and safeguarding training for staff, people using services, carers and their families. Unfortunately for some, their rights are often not fully respected, and they face risks caused by the system failing to fulfil its responsibilities.

In 2016 TLAP carried out a survey on the Care Act 2014. It surveyed the views of nearly 1,100 people on their experience of care and support, 60 per cent of whom were carers. There were some positive findings, for example 58 per cent overall said the support they received made daily living better. However over half, 51 per cent, said they had experienced no improvement or felt less safe with the care they were being given.

We should of course avoid making too much of any particular finding, however there is often a disparity between what services think they are doing and what people feel and experience. We have to get the balance between people’s rights, risks and responsibilities correct, but maintain focus on care and support.

To achieve this we need to get leaders acting together to do ‘the right things’. Spend time engaging with communities to build trust and develop the concept of risk intelligence. This approach is summed up well in the re-launched ‘Making it real’ website, produced by TLAP and the Coalition for Collaborative Care (C4CC). It contains a set of principles for what good community-based support looks like and gets to the heart of what matters through a series of personalised statements.

When we look at risks we should do so in the context of people’s strengths, resourcefulness and support networks. Everyone should have the right to make choices about their lives, so it is important to work out whether a risk is significant, and whether it is likely to happen.

In his book ‘How to live with uncertainty’ author Dylan Evans defines risk intelligence as the ability to estimate probabilities accurately. At its heart lies the ability to gauge the limits of your own knowledge – to be cautious when you don’t know much and to be confident when you know a lot. The American humorist Gerald Barzan nicely summed up the approach with the quote ‘I wish I could be half as sure of anything as some people are of everything’.

Most people agree that risk-taking is part of everyday life but when their circumstances change they want to be able to call upon the right support at the right time to help deal with risks without losing independence.

The workforce, at all levels needs to be empowered and supported to encourage choice and control. Co-production with people, families and carers – both at the individual level and at the strategic level. Supporting disabled people to have a voice individually and through their organisations. This is the way forward for achieving the right sort of balance between rights, risks and responsibilities.