Taking self-directed support back to its roots

The Social Care Innovation Network seeks to examine and promote ways that innovative approaches to social care and support can be supported to flourish and develop. One of the themes the network will be working on is taking self-directed support (SDS) back to its roots. Self-directed support is about people being in control of the support they need to live the life they choose.

We have the Care Act, but it is not yet a lived reality

The enacting of the Care Act was an important moment, enshrining in law the principles of self-direction (which we call self-directed support), shaped and fought for by disabled people and their supporters over an extended period. It is disappointing to say the least that today’s reality of experience for many needing care and support falls a long way short of the noble aspirations outlined in the Act.

Social care should be an enabler to allow people to live their lives the way they want to, making it possible to reach their aspirations, but also to get on with the normal things that most people take for granted, like popping to the shops or meeting up with friends. Social Care Future has co-produced this vision that sums it up well:

“We all want to live in the place we call home with the people and things that we love, in communities where we look out for one another, doing the things that matter to us. That’s the #socialcarefuture we seek”.

Giving people purpose and happiness

From Anna’s perspective the beauty of SDS is that what matters in my life and gives me purpose and happiness will be different to you and your life. By giving me choice and control about my care and support it will best be suited to me and my life.

But my experience and that of many of my friends is that social care is a stressful battle. Having my life broken down into a series of tasks or needs (such as washing and dressing) rather than seeing me as a whole person. Having to justify why as someone in my thirties I want a social life. A system based on rules, restrictions and threats, rather than enabling me to have the choice and control that SDS was originally supposed to give. The Direct Payment (DP) I get to purchase support should allow me the coice and control I would like, but my experience is that the Direct Payment Support Service commissioned by my local authority to help me with managing my budget, tend to police how I use the money I have, rather than support me to use my DP well, to get on with my life. My experience has sadly been shaped by a system that doesn’t trust me, is risk averse, has a massive power imbalance (and asserts that power) and has lost it’s humanity.

So, what’s gone wrong?

This Innovation Network acknowledges as its starting point, that the system is not working well for people. So what’s gone wrong? Could we put things right? Do things need to change? And if so, what?

SDS is generally thought of as the professional process of assessing, planning purchasing and providing the care and support needed by a person to assure their wellbeing when this is at risk, and in doing so, putting the person in as full control as possible, to the extent they wish. In order to do this, the full range of choices that are possible about the whole process and the care and support available need to be communicated effectively.

Sounds a bit ‘processy’ and mechanistic, doesn’t it?

Anna and many people like her want to see: :

• A social model of disability and the associated change in thinking that is needed to remove the barriers Disabled People experience
• Independent living and associated principles
• The concept of ‘real wealth’ that has led to a proliferation in ‘strengths and asset based’ approaches by professionals
• Changing ‘the system’ that helps them live as equal citizens independently from one of ‘gifting of resources by professionals’ to one of full citizenship underpinned by entitlements
• Socially welcoming, caring and supportive communities that are accessible to all

Working together to find solutions

People involved in phase one of the Social Care Innovation Network hosted by SCIE, TLAP and Shared Lives Plus felt that it was important to relook at Self-Directed Support and how it could support the development of asset-based areas that would bring to life this more humanistic description of the kind of society envisaged in the Care Act within which, disabled People and others needing care and support can live fulfilled lives as full and equal citizens.

We have learned a great deal over the past decades about what works in self-direction. Over recent years we have been gathering experiences about what is holding back and stifling progress.

A group of councils, providers and people with lived experience are keen to get together over the next six months to learn from each other about what they can do to close the gap between the aspirations of the Care Act and the reality of curtailed hopes of the Self-Directed Support process that many experience. I think there are some straightforward but challenging changes that could be made that would take local systems a long way down the path to closing that gap. We’re looking forward to putting these to the group and exploring them together.