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The benefits of direct payments have long been heralded by those who use them and those who championed them in the 1990s. They were introduced in England and Wales under the Community Care (Direct Payments) Act 1996 and came into effect on 1 April 1997. New legislation also paved the way for their use in Scotland and Northern Ireland.

Until then it had been illegal for social services departments to provide cash for users to allow them to employ carers or for adaptations to their home to promote independent living.

Yet, despite the known advantages, at the end of March 2003 the number receiving the payments remained low - just 9,600. A report published earlier this year found that, although other groups were beginning to use direct payments, about 85 per cent of them were still being used by people with physical disabilities, the first client group to become eligible.¹

However, the report found that even within this group there was "still a long way to go" before direct payments become part of mainstream provision. And the findings for other client groups were even more disappointing. Only "a very small number" of people with learning difficulties were found to be receiving direct payments and "too few" older people were being offered them. Additionally, progress in developing direct payments for people with mental health problems had "been disappointing".

A gloomy looking picture, but do the report's findings match up with the mood on the ground?

Physical disability

Most people accessing direct payments are those with physical disabilities - 8,200 in England. This client group became the first champion of the government's push to deliver services through direct payments, according to National Centre for Independent Living head of policy Roy Webb. Historically this is because when direct payments were introduced, the best schemes evolved from areas with strong local supporters, and most of these were physically disabled.

These users welcome direct payments because they can see a visible difference between the provision of services under the scheme compared with local authorities' approach. Webb says: "Most people we ask say they have experienced a significant improvement in their quality of life. We hope for real independent living outcomes for people through direct payments."

James Elder-Woodward, trustee of the British Council of Disabled People (BCODP), praises the idea of direct payments for allowing some disabled people to take up roles denied under traditional services. But he says independence is not a human right but is controlled "by professional prejudice and political prudence".

Until independent living becomes a human or civil right, the ability of disabled people to control their own lives will continue to depend on professional views during the assessment process and political attitudes to resource allocation, Elder-Woodward says. Direct payments are also blighted by a lack of bridging funding to help overcome the move from service-centred budgets to person-centred budgets.

Most of the problems the BCODP hears about relate to assessment and resource procedures. "Professional assessment is blighted by a negative attitude that disabled people cannot be responsible for their own welfare and that of their employees," says Elder-Woodward, adding that disabled people who are interested in direct payments receive the best help from peer support organisations.

Learning difficulties

Two new guides aimed at increasing the number of people with learning difficulties using direct payments were published at the end of last month (news, page 9, 29 April). Campaigning charity Values into Action (VIA) wrote the Department of Health's guidance for local authorities on how to make direct payments more accessible for people with learning difficulties. Swindon People First also produced the easy-to-read guidance for users.

VIA deputy director Linsay McCulloch says: "Anything we can do to bridge potential misunderstandings by local authorities and professionals about people with learning difficulties and direct payments is important."

She adds that, although in theory people with learning difficulties have equal access to direct payments, in practice they do not. "It has proved difficult for some people to get them, although there is some good practice around the country."

The problem, she adds, is the ability of some councils to address the issue of consent and management for people with learning difficulties. "Users can have as much support as they need to consent to or to manage direct payments," McCulloch says. "But it's a bit difficult for some local authorities to accept that these people need support in making decisions about direct payments."

Direct payments for people with learning difficulties are "excellent", says Colin Gear, who is on the management committee of Milton Keynes People First. He has received direct payments for three years: "I have waited 60 years for the freedom they have given me."

Gear has employed Tim Jones, his fourth support worker, since last autumn for 13 hours a week to help with showering, cleaning, laundry and grocery shopping.

The low take-up rate among people with learning difficulties, especially compared with physically disabled people, is known to Mencap. David Congdon, the charity's head of external relations, urges all social services departments to ensure that people with learning difficulties are aware of direct payments and have easy access to them.

Older people

Over 65s became eligible for direct payments in February 2000. Potentially, older people are one of the biggest client groups which could benefit from direct payments. However, just 2,700 do so.

Jenny Orpwood, information officer at the National Centre for Independent Living, says one of the biggest barriers is the ceiling that local authorities set on direct payments.

"They say that if an older person asks for direct payments they will only pay the sum they would if a person were to go into care. That's about £300 a week," she says.

"But if the care needs are more, then either the individual doesn't get the care they need or the older person has to find the money themselves to pay for the additional care."

There are also significant cost implications for local authorities. Orpwood says: "If everyone over 70 qualified for three hours of direct payments a week that would be a huge expense. Although actively encouraging older people to take up direct payments might improve their lives there's an incentive not to because the cash is not available."

Some older people do not want the hassle of being an employer and others have grown up with the expectation that the welfare state will care for them from cradle to grave.

"If a cleaning lady comes around or meals on wheels then that's fine, but they don't want the burden or responsibility of managing direct payments," says Orpwood.

Lack of awareness is also a problem. Heather Clark, senior lecturer in the school of social studies at University College Chichester, says: "Direct payments need to become as well known as the home help service. And care managers need to become more aware of it themselves. It's not part of the culture of care management teams working with older people."

Practitioners do not always feel confident about offering direct payments to older people, she says, and might assume that older people would not be able to manage them. Presumptions are also made about the fullness of older people's lives. Yet, as Clark explains, direct payments can enable older people to pursue a more active social life - one older person used them to go on fishing trips as an alternative to respite care.

Mental health

The take-up of direct payments by people with mental health problems remains low, at 300. But Peter Beresford, chair of user group Shaping Our Lives, believes things are changing and the take-up rate is accelerating.

The problem is that many service users - and some practitioners - do not always realise that direct payments could be a suitable option.

"People have not been supported traditionally to think about themselves in these kinds of ways," says Beresford.

However, in order to increase the take-up there is little doubt that action is needed and that accessible information should be offered to potential users.

"There's a sense that there hasn't been enough active promotion at a national level. The National Institute for Mental Health in England needs to be getting much more behind this, and direct payments could be built into other strategies," says Laura Luckhurst, a freelance consultant who specialises in direct payments.

Some people with mental health problems find that their condition fluctuates and direct payments can be useful in dealing with the changes. "They can manage their budget in a way that they know will provide contingency or back-up if things get worse," she says.

Essex Council has 45 mental health service users on direct payments. Mike Hay, who is responsible for the council's direct payment scheme, attributes this success to the fact that this client group has never been excluded, and to the independent advocacy service which was set up early on.

It can sometimes be difficult for people with mental health problems to see how direct payments could help them as, on the whole, they do not need a high level of physical assistance, he adds.

"But they give people real choices and put people in real control over the way their support is provided. People using direct payments tend to become more confident, assertive and have fewer hospital admissions," says Hay.

Direct payments were introduced to ensure that more service users could have a greater degree of control over their lives. Although it is working for those who use them, accessing them is not always so straightforward. Both users and professionals agree that in order for direct payments to work smoothly, users need to be able to access good support services.

So, if the take-up rate of direct payments among services users is to increase, local authorities must put accessible information and support on the agenda. Anything less shortchanges them and users alike.

¹ All Our Lives http://www.audit-commission.gov.uk/Products/NATIONAL-REPORT/586EB7DB-A4A6-4C78-88B7-4EF4D60BAFA2/AllOurLives.pdf

Who receives direct payments? 

• 8,200 people with physical or sensory disability 
• 2,700 over 65s  l900 people with learning difficulties 
• 300 people with mental health problems 
• 200 others 

Figures for 2001-2   Source: Department of Health

It's about me being in control'

"For me as a disabled person, getting the support I need enables me to lead an independent lifestyle," says Berni Vincent.  She has a physical impairment and has been receiving direct payments for eight years. 

"It's about being in control of who I have providing my support, what they do for me and when they do it. Direct payments give me flexibility," she says. 

"Traditional services may provide someone to get you up but it might not be until 10 or 11 o'clock, which is not constructive for an independent life. I work full time, and leave at eight in the morning and get home at seven at night."   Vincent, a senior direct payments support worker for the Southampton Centre for Independent Living, runs training courses for care professionals. They are not always aware of direct payments and do not understand how they can affect an individual's life. 

She says: "There's sometimes an assumption that someone with a complex impairment can't use direct payments. I think everyone can use direct payments if they want to. It's about how the support is in place to allow the person to manage." 

In Vincent's view, peer support from another disabled person is best. "Someone who does not have an impairment may be a strong ally and have some understanding of the issues but this is not the same as living with discriminatory barriers on a daily basis."  Vincent employs four support assistants. She says direct payments allow people to recruit staff for their strengths. 

"There might be someone who is a good cook or driver or who is good at supporting you with personal care. We have a responsibility to be a good employer," she says.

'It can be hard being a boss'

Cliff Moss has learning difficulties and has been using direct payments since June 2000. He is a self-advocacy worker for Swindon People First, which is where he first heard about direct payments.   Initially, he was not sure what direct payments entailed and talked about it with his family and others who knew about the initiative. "Once I understood what it was about I thought it was a good idea."  When he started receiving direct payments he lived with his wife, Clare, in a flat in sheltered accommodation. The couple applied for direct payments because they did not like having agency support staff as they had to deal with too many people. Moss says: "We wanted to have more control over our lives and felt direct payments were a good way forward."  

Clare died last May and Moss has continued to use direct payments to pay for his support worker, Gay Waites. She has worked for him for two years and helps him with his cleaning, cooking, correspondence, going out, hospital visits and money. They have a good relationship: "She is really nice, it's like having a really good friend."   For him, the best thing about having direct payments is that they have helped him live independently. However, the system is not without its difficulties and being the employer can prove challenging. "It is hard sometimes being a boss and managing staff. I had support to help me sort out problems with staff," he says.  

He recommends direct payments to other people with learning difficulties keen on using them as long as they "suss it out" first.