While many disabled people are fairly independent of social care services, some of us require high support packages, and this means we need to interact with professionals, who basically assess and decide how much assistance and support we receive. I am very independent in the decisions I make and this is because of the support I receive, but this does not stop some professionals believing that either they are in control of every minute of my life, or there is not at least someone being my puppet master, 'allowing' me to make the choices I make myself.
This is an attitude I have encountered in many professionals, who assume for some reason someone else is controlling me, as having a speech impairment seems to mean to them I am not fully able to make decisions for myself, believing there must be a family member somewhere behind the scenes. I think this is partly because they are able to successfully control most of the users they are dealing with, or at least ensure users are managed by their carers, particularly if they are perceived to have learning difficulties. I think it is also because many professionals have low expectations of what people requiring assistance and support can achieve within a paternal system that assumes we need every minute of our day carefully managed and supervised.
New Labour's Personalisation agenda for social care services, which has been continued by the Coalition government, was suppose to be an user-led revolution that was going to be a radical shift in power between service users and professionals, and a revolution to improve our choice and control. The basic problem however with personalisation was that it began as, and remains, a professional led exercise, despite claims that it was user-led, or even user-inspired. Disabled people and the independent living movement had already won the right to have a direct payment, instead of services, in 1996, which remains relatively unchanged.
For me, personal budgets, which some people rave about, are no more than an itemised bill, so people know how much their services cost, even when they have little control over the services they receive. It is an odd concept for public services, and there are few services where people need to worry about how much services cost. I can not imagine many people would be pleased to be informed about how much their hospital stay costs including their operation, even if they did not have to pay it themselves. As I write this, I realised personal budgets is a ploy to make people own the cost of social care in a way like no other public service.
The language of personisation is controlled by professionals, as well as the concept, and I fear that it was designed as a reluctant step forward, to prevent three steps forward, as an answer to the rising expectations of service users. The idea of choice and control are now overused and meaningless, especially when professionals are unwilling to let go of the power and give users the responsibilities they need to manage real choice and control. But letting go of power is very hard, especially when it is attached to your livelihood. My supposed dependency keeps numerous professionals in paid employment and therefore they will not be so easily prepared to make themselves redundant.
If we really want to change the power dimensions between professionals and users, then we need to firstly be honest about them, and stop pretending many users have a control over their lives, when that is not really the case. Professionals could become our advocates, supporting us to navigate our journeys as our running mates, as oppose to balls and chains slowing down our full inclusion into society as contributing citizens. With the support we require and choose, we can indeed take control of our lives,