Author: Simon Duffy
It is really exciting to see self-directed support becoming the framework for social services in Scotland. On its own this may not lead to revolutionary change, and there well be many problems along the way, but it is still important progress.
Self-directed support extends independent living to people who previously have had to use institutional services, and it can even open new opportunities for people who use direct payments or the Independent Living Fund.
But as an Englishman, who spent many happy years working in Scotland, I am always slightly troubled by the way in which self-directed support is often described as if it were an English innovation, one that is now being imported into Scotland. Nothing could be further from the truth.
Self-directed support is not an English innovation.
Self-directed support is an evolving international innovation.
But if any country can claim ownership for the concept of self-directed support it is Scotland. To explain why self-directed support is Scottish let me set out how it developed and what it offers in comparison to direct payments.
First of all self-directed support means being able to have control and flexibility without - necessarily - having to take a direct payment. For some people, especially people with learning disabilities or older people, managing a direct payment, especially being an employer, is very challenging.
This is why Individual Service Funds (ISFs) were developed.
Individual Service Funds were first developed by Inclusion Glasgow in 1996. We used this system to get people with learning disabilities out of Lennox Castle Hospital. Everybody moved into a home of their own, everybody had their own support team - recruited just for them, and people could use their support and their budget to live a life of their choosing.
This is an important Scottish innovation and it made independent living possible for many more people.
Individual Service Funds can be managed by providers, advocacy groups, peer support groups or community groups. Hopefully Scotland will see more people use these kinds of support systems to open up choice and control for everybody.
Unfortunately this is not inevitable.
In England there have been very few developments in this ‘middle space’ between direct payments and local authority control. Many people have had to simply accept traditional services. Whilst they may be told that they now ‘have a budget,’ that budget brings no additional benefits because it must be spent on Council defined services. The person is not really directing their own support - they remain a bystander. At the other extreme some people are being forced to take a direct payment even when another arrangement would suit them better.
Hopefully Scotland will build on the work of the organisations who first developed Individual Service Funds, networks of service providers like Altrum, and the recent work on Individual Service Funds by the CCPS. Disabled people’s organisations can also extend their own role, enabling people to decide how much direct control they really want to take.
Self-directed support does not just extend independent living to more people, it also begins to create a flexible entitlement that people can control for themselves - what is sometimes called an Individual Budget.
This idea was also not invented in England; it was first developed in North Lanarkshire and East Renfrewshire as part of an innovative pilot programmes in 2000 onwards. People were given a budget and the freedom to develop their own plans about to spend it, in their own way. While some people still needed support the project proved that many people could decide much more for themselves and social workers could support people to lead their own planning and decision-making.
The individual budget element of self-directed support is also important in order to help people maximise their options. It means you can use funding flexibly to build on your own talents, your connections and all the opportunities that life throws open. You do not need to go back to your social worker or the local authority to make a decision - it is your money. Even people using direct payments found, in the old system, that their support package was often defined by their social worker and could not be used as creatively as they would like. Individual budgets can change this and, at their best, create a genuinely flexible entitlement.
Although developed in Scotland these ideas have certainly had a significant impact in England. Today most local authorities have accepted that the future for social services is to give people more control and choice - for everyone - not just people with physical impairments. New flexibilities and new opportunities have been created, day centres and other institutional services are declining, more people are finding jobs, building relationships - having a real community life.
All of this is genuine progress; but threats and difficulties remain.
The biggest problem is that self-directed support is now intertwined with dramatic cuts to social services. Over the past 5 years social services has been cut by 25%. This is a direct result of cuts imposed on local government by Westminster - cuts that have fallen hardest on local government.
It has been impossible to protect self-directed support from the impact of these cuts. People don’t just find their budgets cut directly, they face increased charges (the care tax) tighter eligibility rules (creating more crises) and new bureaucratic controls over their budgets (which are costly and undermine creativity and efficiency). The fact that many of these changes are damaging and self-contradictory hasn’t stopped them. Increased pressure on the NHS seems to be the direct result of these reductions in community support. The system is in real crisis in England.
This demonstrates the critical weakness of self-directed support. It is a system for improving social services, for making it more consistent with independent living. But the essential legal guarantees and the political drivers are missing. Everyone can now say they believe in independent living - but the cuts still fall first on disabled people. Changing the mechanics of how the system works doesn’t, on its own, guarantee the essential commitment to human rights that we need. At its worst it becomes window-dressing.
The second problem in England has been the very poor implementation of what is now called ‘personalisation'. Often targets are set - but the culture remains the same. Lots of consultants get rich - but people’s lives don’t change. New bureaucratic systems are put in place - but power doesn’t really shift.
Paradoxically the main problem is that too much enthusiasm for self-directed support by central government can damage its development.
Instead of disabled people, families and professionals working together to learn together there is a tendency for government to look for the quick fix: the consultants, the targets, the latest computerised resource allocation system or whatever. All of this misses the point. People miss out on doing the real work of changing how things really work. They don’t focus on the essential values of independent living, the real impact on people’s lives and the essential changes in power and control that need to take place.
I hope Scotland doesn’t make the same mistakes as England. It does not need to. This is why it is so important to remember that Scotland already has the history and experience to make self-directed support work well. It has some good councils, who have been working to improve their own systems for years. It has a great independent living movement and great disability leaders. It has some of the most innovative service providers in the world.
The key to success is for Scotland to remember the ethical foundations of self-directed support:
Self-directed support is not the end of the journey towards independent living. It is just another stage - it means more people get the chance to join in. But the real goal is to ensure that everyone in Scotland gets to live a life of citizenship and inclusion. Self-directed support must be measured by that yardstick.
This article was first written for SPAEN and was published in their Spring 2014 newsletter here.
The publisher is The Centre for Welfare Reform.
Self-Directed Support is a Scottish Innovation © Simon Duffy 2014.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.
Simon Duffy explains what an Individual Service Fund is, why it it is useful and what a simple innovation it is.
A research report by Sian Hoolahan of Choice Support describing the progress being made in Southwark using Individual Service Funds.
Researchers Animate discover that Individual Service Funds (ISFs) and Inclusion have had a positive impact on people's lives.
How one family used an Individual Service Fund (ISF) to improve care and support for their boys with complex needs.
This paper which describes the process by which we can design personalised support for ourselves or those we care about.
An Individual Service Fund is a mechanism for controlling an individual budget using an organisation.
An Individual Service Fund is a useful way in which resources can be used flexibly to achieve personalised support.
A report describing how to provide support to people with the most complex needs or challenging behaviour drawing on the work of Partners for Inclusion.