Mythbuster and questions
There are myths about in Control and Self-Directed Support – things that we hear that we think are not correct.
Also many people ask similar questions when they are finding out about Self-Directed Support.
Below are the myths and frequently asked questions – and the answers in Control has written.
If you want to add anything to our answers, we would like to hear from you. Please e-mail:
admin@in-control.org.uk
Mythbuster
‘in Control just wants to save the government money’
No, that’s not what in Control is about. First and foremost, Self-Directed Support is about people having control over their lives. To have that overall control, people need more control over the their money and support.
In creating a system in which people have more control, it is essential that money is used more effectively and more fairly. So in Control is also concerned about the effective use of money in the system. Self-Directed Support is a way of helping local authorities to use money better so more people can get support in a way that suits them. It moves money for back office processes to less wasteful, smarter approaches.
So far it does seem that you can introduce Self-Directed Support in a way that means that people are happier and get better lives and yet (on average) people need less money than was being spent in the old system where people had no control.
This is not surprising. When people control their own money it is likely that they will tend to spend it more effectively, partly because they understand their own needs and circumstances better than the system ever can.
However, it is unlikely that this will lead to any overall savings in local authority budgets. This is partly because any savings are likely to be re-directed to people who are excluded from getting services at the moment or who need support, but don't like the limited services on offer.
So, our understanding is that Self-Directed Support is more efficient but won't save money. Instead it will allow money to be spent more fairly, in a way that reaches more people.
However this is a complex question and a lot depends upon the practices of central and local government. in Control will continue to monitor what is happening and try to help ensure that the greater efficiency of Self-Directed Support is used to benefit those who need support.
‘Self-Directed Support is just another fad. It won’t last’
Self-Directed Support builds on a long history of disabled people trying to take control of their lives. in Control has been working with local authorities and disabled people and their families to develop Self-Directed Support since 2003.
Government Policy over the last 20 years has all been in the direction of people having more individualised support. Self-Directed Support is now central to government policy – as seen in Putting People First. The Government has even put funds behind the transition process to ensure everyone who is eligible for social care support can be offered Self-Directed Support by 2011.
Self-Directed Support really does seem to improve people's lives and cost no more money. Politicians, professionals and ordinary people are unlikely to ignore something so attractive.Partly this is because the current system does not work well. It is inefficient and increasingly serves fewer people with more and more money. Those caught up in this system – professionals and people using social care – are fed up with a broken system and want something better.
‘in Control wants to get rid of residential care’
This is not correct. We believe that people should be able to choose the option that is right for them. If someone chooses residential care (or any other form of support) it should be their real choice. in Control believes in open information. So, when choosing or using residential care (or any other option), the person should know how much it costs and that they can use that money to choose a different option if and when they want.
‘It can only work for people who can manage their own money and support’
There are lots of different ways that people can take control of their lives. People do not have to deal with the cash directly themselves to be in control of what their money is used to buy. There are six different ways for people to control a Personal Budget, including taking the money as a direct payment, using an Independent Living Trust, a broker or a provider (an Individual Service Fund). These are all described in more detail in various papers on the website and we are learning more about these options all the time.
People can take the degree of control they are comfortable with and they can still get a care manager to manage the money. Similarly it is not necessary for the person to manage the support. They may have someone they can ask to do this, or they may use a part of the money to pay someone to do it. The important thing is that the person has as much control as they want – not who does the job of managing.
‘Self-Directed Support is just another burden for families’
The way the old system works, not having any control can be a terrible burden on families. If done badly, Self Directed Support could also be burdensome. But extra work should not be imposed on families and, if done well, Self-Directed Support gives families a brand new opportunity to have a better balance in their life. They can take the amount of direct control they are comfortable with.
Some families find that they take just a small amount of direct control at first, see the advantages, and then want to take more. Our findings so far demonstrate that Self-Directed Support can mean people have better, happier family lives.
‘Self-Directed Support will put professionals out of work’
There is no indication that this will be the case. It is likely that, however the system is organised, professionals will play an important role. But Self Directed Support does mean that professional roles are changing.
The social care system is there to enable people to be full citizens of their communities, and to protect those who are vulnerable or at risk. Self-Directed Support will mean that professionals need to form new, more equal relationships with the people they support. For many care managers this means being able to ‘return to doing social work’ (a return which many welcome).
‘Some people don’t want to be in control’
Everyone likes to be in control at some level. But that doesn’t mean you have to control the money and support if you don’t want to.
You can take as much direct control over funding and support as you want. It’s not a choice between having total control or none at all. Some people take a small first step – directly control some part of the funding and support – then see the advantages and want to take more control.
‘Self-Directed Support is for people who want to live their lives as independent adults. It is not suitable for people who are growing old and frail’
Self-Directed Support doesn’t dictate the lifestyle that people must lead. Rather, it offers people the means to tailor their support to their preferred lifestyle. This may be as simple as choosing when to get up and when to go to bed. The current system can struggle to make sure even these simple things are right for people who need support.
‘Self-Directed Support only works for people with more expensive support packages’
Not everyone using Self-Directed Support has an expensive support package. The benefits of control do not disappear for people with more modest packages.
‘People will be isolated and at extra risk of abuse’
There is no reason to think that Self-Directed Support is less safe than living in hostels, group homes or other services. Indeed there is evidence that a very large number of people are failed by existing services, If Self-Directed Support is done well, they will be safer. There is no reason to think that people will be isolated.
Self-Directed Support should be organised to minimise the risk of abuse by:
• putting the person in control of their life
• making sure people who love the person are enabled to be part of the person's life
• designing an agreed system of support and safeguards that fit the person’s preferred lifestyle.
Being known to many people in a local community can be the best safeguard for vulnerable people.
In addition, local authorities are working on new ways of providing protection that is effective and appropriate to Self-Directed Support. An example is Oldham's Risk Enablement Panel.
In May 2008 there were about 5,000 people directing their own support. A 2007 evaluation of in Control by Professor Chris Hatton of Lancaster University showed that, of 196 people asked whether they felt safe and secure at home since directing their own support, 29% said they felt more safe and secure; 70% said they felt as safe as before; 1% said they felt less safe.
There is no evidence that people are at extra risk of abuse and some reasons to think that Self Directed Support may protect people from harm considerably better than traditional services. There is, however, no room for complacency and no system can be 100% safe.
‘Self-Directed Support isn’t legal’
It is legal, and it’s government policy. The government’s Putting People First ‘Concordat’ of December 2007 says that every local authority will need to make Personal Budgets available to people.
The local authority circular Transforming social care makes clear that an essential feature of these changes will be ‘a clear, upfront allocation of funding to enable (people) to make informed choices about how best to meet their needs, including their broader health and well-being.’ (LAC (DH) (2008) 1, Transforming Social Care, Department of Health.)
‘Self-Directed Support is just for people with family or friends’
Everyone can have control over their support.
Some people can do it themselves, but some people need help to be in control.
If you do need help to be in control then you may (or you may not) choose to use your family and friends to help you. For those people who have good networks of family and friends this is a common way of organising things because we often turn to those we trust the most for help with things that are very personal. Not everybody makes this choice. Some people like to get help from people they pay or with whom they have a more independent relationship.
Some people don't have good networks or family or friends. This doesn't mean they can't be in control. If they don't have these networks they can use other options.
These include:
• other people with disabilities, peer supporters
• paid independent brokers
• people who work for free community advocacy or advice services
• service providers
• care managers or social workers
• intermediary organisations.
It is the job of the local authority to make sure people know about all these options and to help people access the option they prefer. Some people will help as part of their job. Sometimes people may want to buy other help with a part of their Personal Budget.
A good support plan is likely to help people make or keep a network of friends.
‘Personal Budgets are no different from Direct Payments’
Personal Budgets and Direct Payments are not the same thing, nor are they competing ideas. In a system of Self-Directed Support everybody is given a Personal Budget and some people decide to manage their Personal Budget as a Direct Payment.
Someone has a Direct Payment when their local authority provides them with cash instead of a service; the person then purchases their own support directly. A Direct Payment, in other words is a way of managing your social care money.
A Personal Budget is more than this. You have a Personal Budget when you know how much money you can spend, you know what outcomes you are aiming to achieve, and can decide exactly how and when that money is spent.
Early evidence from in Control's work suggests that very high numbers of people do choose to manage their Personal Budget as either a Direct Payment or Indirect Payment.
Some people choose to mix and match - part Direct Payment, part direct service. This is fine if it is what the person chooses.
‘in Control talks a lot about support plans, but ‘support plan’ is just another name for a care plan’
Care is defined as ‘to provide, look after, watch over’ (Chambers Twentieth Century Dictionary). A care plan is a plan that starts from the presumption that people need to be provided for, looked after and watched over. It is most usually a prescription by professionals that describes how they, in their experience, believe care is best provided (given the assessed needs of the person concerned). It usually comprises a mix of services selected from a list of services specially set up for older or disabled people with social care needs.
Support is defined as 'to back up, to nourish, to strengthen' (Chambers again). A support plan is a plan that recognises that people are active citizens who sometimes need extra back-up, nourishment and strength to play a part in their community. It assumes that people know what they want from life. If they seem not to know what they want, then they can be helped to discover this using a set of simple techniques. A support plan, therefore, says things about the person, who they are and what they want from life. It goes on to say how they might practically go about making their plan real over a period of time. Often, they will realize their plan by making use of ordinary resources in their own local community.
In order to plan well, you must know what resources you will be able to use. This is why in Control developed the idea of a Personal Budget – to tell people upfront the social care money they are entitled to.
When people plan, they need to reflect on what they have learned. They need to review and, often, change their plan. When people plan their own support, they can reflect and review all the time and in their own way. However, the local authority also has a role in enabling and enlivening the review process and ensuring that people's support plans are working well.
‘People won’t really be allowed to spend their money flexibly’
It is very important that people are allowed to spend their money flexibly.
One role of the local authority is to work out who is the best person to control the Personal Budget. Often this will be the person or someone close to them that they trust. Sometimes it may be a professional.
If the local authority has worked this out properly then it follows that the person managing the Personal Budget is the best person to decide how the Budget is spent. If this is the case, then, in most circumstances, they must be free to spend the money in the way that will make the most sense for the person who needs support.
If local authorities impose general restrictions that say 'you can't spend your money like this...' then there will have to be a very good reason to back up those restrictions, and strong evidence that spending the money in that way is always unhelpful. If there is not strong evidence then the authority is 'fettering the discretion' of the person and getting in the way of them doing their best possible job.
We recognise that this is an area that some local authorities may find difficult as it involves challenging changes to their current practice. This is why in Control is so clear that good practice is to give people complete freedom (within the law) over how they spend their money.
In exceptional circumstances an authority may have reason to think it may be right to agree a specific restriction on how someone's money is spent. This may be right if there is a good reason, but such restrictions must not be generalised and applied to everybody.
‘People will just misuse the money’
There is no evidence either from Direct Payments or from in Control’s work that this is a problem.
In fact, the greatest risk of misuse comes from institutional and bureaucratic services that can be insensitive to the needs of the person and are easily tempted in diverting resources (legally or illegally) towards uses that do not directly benefit the person.
in Control argues that a shift is needed in the way we think about this question and strongly suggests that when the money is allocated to the person it becomes their money and is no longer public money. It is, of course, allocated to them because they have particular needs, and so it is legitimate for public servants to ask whether the money is doing its job - whether those needs are being met or not.
If a person’s needs are not being met, then we might guess that the person needs extra help to think about what needs to change. Some conversation is needed about this. This might happen as part of the review process (or in a lot of cases even before the review). But this is not the same thing as saying that it is legitimate for public servants to dictate how a person should spend their money. It is important that all concerned understand this, and that we try to influence those politicians, journalists and others who are yet to understand the benefits of empowering people in this way.
If someone does not want to manage (or finds they cannot) manage the Personal Budget themselves, the local authority must find another person to act as their representative. The principles of Self-Directed Support still apply.
‘Self-Directed Support won’t work for people from black and minority ethnic communities’
Members of some communities sometimes rightly complain that the services on offer exclude them in different ways:
• it's hard to find out about them
• the kinds of help on offer don't fit well with their lifestyle
• services can fail to respect people's religious beliefs.
For these and many other reasons, it is often felt that the current system discriminates against people from black and minority ethnic communities.
Self-Directed Support does not discriminate in this way. Instead it lets people design services that suit them and their community. There are already many practical examples of how Self-Directed Support helps:
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it helps people recruit supporters who share their first language and come from their community
- it helps people set guidelines and rules that fit their religious beliefs
- it helps people feel that their voice really matters.
Examples showing how Self-Directed Support can work for people from black and minority ethnic communities are on the in Control website.
‘Self-Directed Support is bureaucratic and expensive’
There is no evidence to suggest that Self-Directed Support is more costly to administer than the current system. On the contrary: though there is not much real data on the transaction costs of social services, in Control estimates that about a third of social care money is spent on administering the current system. Self-Directed Support allows people to control many aspects of the assessment and planning process that are currently undertaken by paid professionals. The new system will be more efficient than the old one.
in Control has found that many people, with support from friends and families are more than able to lead their own assessment and planning and to design their own support. This means that professionals who at the moment struggle to work with large numbers of people are free to work more closely with those who do need support in these areas.
Frequently asked questions
Below are some of the questions that people often ask. We have written some answers.
If you want to add anything to our answers, you can. Please e-mail:
admin@in-control.org.uk
What is Self-Directed Support?
The term ‘Self-Directed Support’ describes a set of practices by which people can move from the role of passive consumer to that of active citizen. These practices have been developed largely around the needs of people for 'social care' but they can equally apply to needs for health care, housing, income-support or anything else which is needed for active citizenship. The defining characteristics of Self-Directed Support are that:
- The support is controlled by the individual
- The level of support is agreed in a way which is fair, open and flexible
- Any additional help needed to plan specify and find support is provided by people who are as close to the individual as possible
- The individual controls the financial resources for their support. It is their money.
- All of the above practices are carried out in a manner which conforms with an agreed set of ethical principles (how can we clarify this?)
Self-Directed Support had its origins in the United Kingdom in the Independent Living Movement of people with physical impairments. They campaigned in the 1980s and 1990s for the introduction of Direct Payments. At around the same time, the Independent Living Funds were introduced to assist a small number of disabled people to control some of the money they needed for personal care. The idea of Support Brokerage entered the literature then as an approach to assisting people to commission their own support. In the late 1990s Person-Centred Planning techniques were introduced into learning difficulty services and were promoted through the Valuing People White Paper.
In 2003 the first editon of Keys to Citizenship by Simon Duffy was published and in Control was set up by a number of people including Simon, Julie Stansfield, Martin Routledge, Helen Sanderson, Caroline Tomlinson, Carl Poll, Jo Williams and Steve Jones. It was set up as a project of Mencap with the support of the Department of Health’s Valuing People Support Team.
A seven-step model was proposed, based largely on the learning from Simon's work in Scotland. Self-Directed Support has come to be more clearly defined since that point through the practice of those individuals, families and local authorities that have volunteered to test and improve this model. In early 2008 more than three quarters of local authorities in England are involved. Ten of those are already working towards using Self-Directed Support as the approach for everyone needing social care support.
‘Where does the money come from?’
There is no new money to go into Personal Budgets. If Self-Directed Support could only happen when large amounts of new funding become available, it is unlikely that it would happen at all.
So, the amount of money available is the same as is available now and it comes from that money which social services are already spending on social care. However, this approach should also help people identify and use other sources of funding (e.g. the Independent Living Fund, Benefits, Employment, Community Services, Health, Education and grants).
‘How do I get this ‘in Control money’?’
Ask your local authority. Over three quarters of English local authorities are members of in Control. They can tell you how they are delivering and developing Self-Directed Support. in Scotland and Wales, too, local authorities have begun work. In June 2008, in Control was just starting in Ireland.
‘What is in Control?’
It is an organisation helping people get real choice and control. It is supporting local authorities to deliver Self-Directed Support.
in Control is a social enterprise that was set up to transform the current social care system into a system of Self-Directed Support. Its mission is now to create a new welfare system in which everyone is in control of their lives as full citizens.
It is a partnership working with different kinds of membership – for example, citizen members, local authority and NHS members, provider members, commercial members, sponsors and ambassadors.
in Control has over 120 local authority members (in June 2008) that are working to change their systems.
It was set up in 2003 and in 2007 it was established as a Company Limited by Guarantee. Soon it will be registered as a charity.
‘How does Self-Directed Support fit with eligibility e.g. Fair Access to Care Services (FACS)?’
in Control is helping local authorities with a step-by-step approach. A more efficient use of money frees up resources for preventative work. in Control is creating a variety of means and systems that free the local authority from having to only work to restrictive FACS criteria. At present, however, the local authority must work with people who are assessed as meeting the eligibility level the Council decides. This level varies from area to area.
‘How does Self-Directed Support fit with charging?’
It doesn’t. Charging is an expense in itself and a complication. in Control’s view is that charging should be abolished as the Resource Allocation System will sort things out by allocating money fairly.
‘What if the Personal Budget isn’t enough?’
The Resource Allocation System (RAS) produces an indicative allocation which should only be viewed as definite once the person’s plan has been agreed (at stage 3 of the 7-step process). It is the planning process itself that tests whether the allocation is reasonable. The key question here is: can a plan be developed that allows a person to achieve the outcomes identified in the RAS? This question decides the reasonableness of any allocation. In practice, if the amount of money is seen not to be enough, the local authority must either allocate more funds, or work actively to show how a plan can be developed that achieves the agreed outcomes within the allocation.
Councils need to develop a Resource Allocation System that is compatible with their duties in law and with policy guidance. For example: councils have a statutory duty to assess needs and to provide help to people who meet their eligibility criteria. Councils also need to continue to meet their statutory duties to carers. Councils need to ensure that their resource allocation system is compatible with guidance on Fair Access to Care.
In other words a council can't just say that the amount indicated by the RAS is enough. People have come-back based on statutory duties.
‘What happens if you also need help from the NHS?’
At present there’s less flexibility with NHS funding than social care money. But things are changing.
The government is looking at how support can be personalised for those with long-term health conditions. Even now you should be able to negotiate with doctors and nurses about how your health needs are met in a more personal way.
If you have a short-term health crisis, then you could try asking for a review of your support plan.
in Control is just beginning work (in June 2008) with Primary Care Trusts and local authorities to explore how Self-Directed Support works in the NHS and at the boundary between health and social care – for example, around mental health, long-term conditions, dementia and substance misuse. This is the Staying in Control programme.
‘What if people save some of their money?’
A Personal Budget is money that has been allocated to an individual because they need it. Once it has been transferred to another party (a person or an organisation), in Control maintains that the money no longer belongs to the local authority.
Whoever receives the money is responsible for using it to do the best for themselves or the person they are managing the money for.
Direct Payments guidance refers to the money as 'public money' and states that: 'Councils are able to require some or all of the money they have paid out to be repaid if they are satisfied that it has not been used to secure the provision of the service to which it relates. They may also require repayment if the person has not met any condition that the council has properly imposed.'
in Control believes that it is a mistake for local authorities to attempt to claw-back any of the funding they have given away. Claw-backs are inappropriate, expensive to administer and counter-productive – when people believe that they may lose money left in their account at the end of a month or a year they are more likely to rush to spend it – often inappropriately. This probably makes the system more inefficient and expensive than just treating the money as properly belonging to the person.
Some people decide they don't need all the money. It may make more sense to celebrate those who return funds in those circumstances than to try and claw back funds. Local authorities should encourage a culture of responsibility and citizenship – treating people as if they are likely to defraud the system is not helpful.
‘What records should people keep?’
The local authority should be most interested in the outcomes that you achieve – are you getting the life you have set out in the support plan? But, of course, local authorities will want to check if you’ve used money legally and so you have to keep some records. It depends if you are controlling the money or if someone else is doing that for you. If you are controlling the money then you have to keep bank statements, basic accounts of what you’ve received and what you’ve spent. If you are employing personal assistants or other staff, then you have to keep a record of payroll and have employment documents like insurance certificate, a contract etc.
But you don’t have to keep a receipt for every cup of coffee or bus ticket.
If someone else is looking after your support money, they have to keep those records. If a provider organisation is doing it, they have to have a separate account for your money. The same is true of a local authority that manages your money.
"If someone receives a Personal Budget, does this count as income, and does it affect their eligibility for Benefits such as DLA?"
No. Personal Budgets will not affect welfare benefits as they are not classed as income to the person. In any case, Welfare Benefit such as Income Support, Incapacity Benefit and Daily Living Allowance are not means tested. What this means is that if somone receives a Personal Budget this does not affect their eligibility for any of these benefits.
"Can a person who 'lacks capacity' as defined by the Mental Capacity Act be forced to receive their social care as a Personal Budget?"
No, no-one can be forced to receive their social care as a Personal Budget. In Control has always made it very clear that there are at least six ways in which someone can manage the money in their individual allocation. These are as a payment to the person themselves; to their represntative; to an Independent Living Trust; to an independent person or organisation (a broker), to a provider organisation; or managed directly by the Local Authority, usually by a social worker or care manager.
"Is it appropriate for a local authority to make Self-Directed Support mandatory?"
Self-Directed Support is about more choice and control, not less. This will be the case in reality if Local Authorities make it clear that the full range of options for managing money is available to their citizens - see the answer to the previous question.