Personalisation or Entitlements

Author: Simon Duffy

Personalisation is a peculiar word. Personal services used to be a euphemism for something rather naughty and, personally, I don’t want a personalised number plate. One of the reasons that people may prefer the word personalisation is that it keeps things vague and it avoids more practical things - like money.

Money is not everything - I prefer love over money - but I’d much rather have love and money.

What about the money?

For more than 30 years there has been a world-wide movement trying to shift the control of the money from government and towards disabled people. In 1996 there was a big breakthrough in the UK, after campaigning by disabled people, when the government finally allowed funding for social care to be provided through a Direct Payment.

However, for most people with learning difficulties, Direct Payments made little difference to their lives. Direct Payments were good - much better than the old system of social care - but they were still not good enough.

Some of the major problems with Direct Payments were:

• Out of bounds - People with learning difficulties and many others were told that they couldn’t access Direct Payments because they lacked capacity.
• Prescribed - If you did have a Direct Payment your care manager would still prescribe how you could use it in a Care Plan that they wrote.
• Unfair - You would only get 75% (or less) of the money that was paid to other people with the same needs.
• Limited - You could employ personal assistants, but were not allowed to use the money to purchase other services or use it creatively.
• Privatised - You could opt out of local authority services, but you couldn’t use your Direct Payment to purchase services funded by government.
• Burdensome - There was no budget for your management costs, so you couldn’t purchase support to be an employer, pay salaries or manage your accounts.
• Disrespectful - You were made to keep your money in a separate bank account, manage detailed accounts and if you saved any money it would be ‘clawed-back’.
• Gifted - Your money was not treated as an entitlement it was treated like a gift.

This analysis may seem harsh. Direct Payments was a big step in the right direction and much better than the old system of social care. But people with learning difficulties and their families deserved a better system.

What would a better system be like?

Self-Directed Support was designed to tackle these problems and to create a new system for everyone using social care. The aim was to create a system that was:

• Universal - Everyone should get the an Individual Budget, but this could be managed in different ways depending on what kind of help you needed.
• Self-Directed - You should be able to make your own plans, in your own way, nobody should be able to dictate how you live or how you are supported.
• Fair - Everyone should get a fair budget, enough money to enable independent living and full citizenship.
• Flexible - It is your budget and you know best how to use it, if you want to use it for health, housing, mainstream services or anything else then you should be able to.
• Public - You should not have to choose between using public and private services, if you want to use your budget to buy public services then you should do so.
• Fully-costed - Not only can you spend the money on support but you should also be able to purchase management, payroll services or personnel services.
• Respectful - Once the money is agreed and transferred to you it should become your money, with no claw-backs and without separate bank accounts and auditing.
• Entitlement - You have human rights which entitle you to enough support and the right to control it as you see fit.

What happened?

From 2003 until 2009 I was part of an interesting project called In Control. This project existed at the overlap between three different groups. First there were people like me, paid professionals (although in my case without any professional qualification or training), then people with learning difficulties and their families and then government people - from both local and central government.

At its best In Control served a useful purpose. It took the existing system, with all its laws, regulations and habits, and it managed to bend it creatively into new shapes that resembled the better system I described above. It challenged old forms of practice and it showed what could be possible. 

Here are just a few examples of what it managed to demonstrate:

• There are other ways budgets could be managed, and families can sometimes be good representatives for people.
• Budgets can be set more quickly, up-front, so people can make better decisions about how to use them.
• Instead of controlling how someone uses their budget it is better to focus on ensuring that people’s needs are met by looking at the outcomes achieved.
• People can do their own planning, using different kinds of support, and professionals could move to the background.

Many local authorities started to implement parts of this new system of Self-Directed Support. In Control helped to share this good practice and it encouraged others authorities to do the same. The idea, borrowed from the world of computers, was that we could design a new ‘Open Source Operating System for Social Care'. In other words, without looking up to government, we could all work on designing, sharing and implementing a better system.

What went wrong?

Many individuals and families now get more control, more flexibility and can live better lives. Some people even control funding from the NHS and education. Some local leaders have really tried to build a better social care system. It is not all doom and gloom.

However there are some very real problems. Some areas implemented these ideas very well, others have implemented them badly and in a few areas things seem to be going backwards.

Here are just some of the problems that people are facing in reality:

• People are being put through new RAS assessments which are being used to cut budgets unfairly, but which then take months to challenge.
• The Resource Allocation System (RAS) is often a monstrously complex set of forms and the process for agreeing the budget is mysterious and long-winded.
• Social workers and citizens have to fill in more forms, questionnaires, plans, agreements than they did before - bureaucracy has blossomed.
• People are not expected to plan for themselves, instead care managers or other professionals carry on writing Support Plans just as they did Care Plans.
• People are still told they cannot use their budgets creatively or as they see fit - instead they are being limited to social care services.
• The budget still has to be managed in a separate account, with auditing and clawbacks.

At the heart of all these problems is the big unanswered question - whose money is this? 

The money should belong to disabled people and their families. If people are entitled to it then it should become their money - that’s what an entitlement means. However, most people in the system still seem to think that the money belongs to the government and so professionals should be able to control it. This is a deep legal, political and cultural problem and it cannot be solved simply by bending the current rules.

The strength of In Control’s approach was that it was able to help bring about important changes without the support of central government; however it did not succeed in bringing about the legal changes that would have been necessary to embed these new approaches. It is for this reason that organisations like the Campaign for a Fair Society are demanding a new system, with a real recognition of the human rights of disabled people.

Where are we today?

Personalisation should be about shifting power and control of money to disabled people, so this means we must talk about funding. The government’s cuts to local government funding will lead to an annual reduction in social care spending of about £6 billion by 2015 - nearly a third of the current spend. It is also cutting benefits by £18 billion. This is the most direct attack on the rights of disabled people since the creation of the welfare state.

We must not accept this. If we cannot fight for the rights of disabled people now - all disabled people, all who are under attack - then when will we fight for those rights. It is not good enough to pretend that merely tweaking the current system with some extra consultancy or training course will solve the problem. Much more profound changes are necessary.

If we are to make further progress then four strategies seem important:

Carry on - There is still much to do and there are lots of ways of making things simpler, easier to implement and much less bureaucratic. The Centre for Welfare Reform has published many practical proposals for doing things better and there are many local areas still trying to do it right.

Challenge - Disabled people and families should have high expectation. Some of the bad practices that people are slipping into are illegal and illogical and so should be challenged.

Connect - Don’t try and do everything on your own - work with other disabled people, other professionals, other families - create your own circles of peer support. Strength comes through working together.

Campaign - Governments listen to people who make a fuss - so join the Campaign for a Fair Society - get involved. Now is not the time to quietly acquiesce.

A version of this text was first published in Community Living, Vol 25 No 4, 2012.

The publisher is the Centre for Welfare Reform.

Personalisation or Entitlements © Simon Duffy 2012.

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.