Foundations 159
Low intensity support: preventing dependency

Older people and disabled people often don't qualify for full social services assistance. Yet many clearly do need help. Low intensity support can help prevent people reaching crisis point and enable them to sustain their own homes. But it is important to strike the right balance between helping people and controlling their lives. This Foundations considers how users perceive their services and needs, and highlights some innovative approaches to support. It assesses what users want, discusses what best practice might be and investigates some of the dilemmas for providers and the implications for policy reform.

The problem   

• Care in the community reforms have focused provision on those with the greatest needs   
• Targeting can mean people get little or no support until their needs become acute 
• Preventive low intensity support is a low priority for cash-strapped local authorities 
• The Government has yet to issue national policy directives on preventive support
• Long-standing services such as home help for older people are being run down 
• Innovative low intensity services for other groups tend to be one-off pilot schemes
• Providers often define people's 'independence' by their physical/mental capabilities, rather than their ability to exercise choice and control over their own lives

Solutions being pioneered

• Locally based support workers who help people engage in the community, provide budgeting and lifestyle advice and liaise with all the key agencies
• 24 hour telephone support to back up day-time service and contact
• Mutual support networks, serviced by support workers but also promoting contact and skill-sharing amongst people using the service

Lessons for new providers

• A good relationship with workers/volunteers can make it easier for people to accept help
• If support is negotiated, people are more likely to respond to and gain from the service
• It is important that people fully understand the link (if any) between their tenancy and the support service 
• Support needs are often assessed at a time of personal crisis. These should be reviewed regularly with users' full participation
• Providers often see housework as unskilled and low priority. But to older women, home helps are experts whose support is as important as personal care
• Older people want help, not care. Being 'looked after' can symbolise loss of independence. Providers should be sensitive in their use of language

Reforms to community care have emphasised independence, choice and dignity. But the focus has been on those with the greatest needs. There has so far been no attempt to issue national strategic directives on preventive services.

Residential care continues to dominate for many people with learning difficulties and low intensity support services - such as help with housework for older people - continue to be downgraded as a priority. Resources remain scarce for investment in pilot projects which could test the cost-effectiveness and viability of low intensity support services.

Research for the Joseph Rowntree Foundation has tracked a number of low intensity support schemes that prevent older or disabled people (including those with mental health problems and learning difficulties) losing control over their lives. Other groups may also benefit from this kind of support, for example, people recovering from drug and alcohol dependency and young people leaving care.

Typically involving occasional but regular contact with staff or volunteers, these services enable people to care for themselves and maintain their homes, reducing the need for costly residential care. Yet social services departments are often reluctant to divert resources to promote quality of life and community integration as an end in itself, without clear evidence of cost-effectiveness.

But those involved in schemes that are up and running - new pilots and existing (sometimes threatened) services alike - are convinced they work. This is the view not just of providers, but of users too.

Support on whose terms?

In-depth research into users' views also often identifies shortcomings in how people are supported within mainstream housing. A recent study of 'floating support' services in Scotland found widespread satisfaction, but a lack of clarity about funding and entitlements. For example, many tenants were unaware that they were paying for support through rent or service charges.

There was also a perceived link between the tenancy and ongoing support, especially among younger people: "I had to agree to get help so I could get my house and I did want help but I'm not sure what would happen if I didn't need help any more."

Many of the participants in the Scottish study had had their support needs assessed at a time of personal crisis. In retrospect, they felt they had not been able to participate fully in planning their future support needs. Most were not aware of their formal care plans. This illustrates the importance of regularly involving people in their own support and checking their knowledge of what has been agreed.

The way the wider community is introduced to people's needs is also crucial to users. At its worst, neighbours have been 'warned' when users move in. This is considered a harmful breach of confidentiality.

Other key findings included:

• Although information may be available to users, it is not always understood
• An out-of-hours service is needed, even if just telephone-based
• People may know how to make a complaint, but not all have the confidence to do so
• Some support workers may not have sufficient awareness of mental illness to support people newly discharged from psychiatric hospital
• Users want the service to help the wider community understand their needs
• There is little evidence that people have a choice over the support they receive

Older people's priorities

Older people do not equate their needs for help with loss of independence. Tasks which they can no longer manage alone are usually willingly given up - but only if the service does not try to carry out tasks they can still do for themselves. People set their own parameters: for some it is doing their own shopping, for others cooking or housework.

"I think the time to go into a home is when you can't cook for yourself."

They are also sensitive to being 'taken advantage of'. Having unknown men doing maintenance and repair work can lead to fears for safety. The services provided by Care and Repair organisations are highly valued because people feel they can trust the workers involved.

Key lessons

• Professionals often see housework as unskilled and low priority. But older women feel home helps are highly skilled. To them, housework is as important as personal care
• Having to rely on their family can undermine older people's sense of independence. Asking for help can feel like an admission they can't cope. Access to alternative forms of assistance overcomes this
• Those with higher levels of need who meet eligibility criteria often only get minimal help with housework. This is because the 'personal care' element of their care package uses up the resources allocated to them

Group support networks

Networks of tenants in general needs housing are supported by a community worker and also by the mutual support of the group members. Access is typically agreed three ways by social services, housing and the agency itself. Staff are appointed to help people settle into the network, and to provide continuing support. They provide one-to-one support to their clients, helping tenants budget and deal with the official world. But they also ensure that the members of the network meet each other regularly.

This is not meant to be a substitute for professional assistance, but to increase the resilience of the networks and ensure they are as cohesive as possible. Success, however, requires a balance between tenants willing to take a lead and those who may be more passive. Although generally not a problem, too many of the latter can undermine a network's effectiveness.

Tenants in mutual support networks are often anxious that professionals should not interfere too much. Support can be offered and negotiated, but not imposed. As a result, the service is more likely to be approved of by those who use it.

Key lessons

• The sort of support provided by KeyRing costs around £50 a week per user. A network is self-financing if only three out of nine tenants in each network would be in residential care if the service were unavailable
• Purchasers need to think carefully about the kinds of neighbourhoods in which schemes are located, and how people are supported to manage their relationships with members of the local community

What works best

• Drawing up key principles behind and aims and objectives for their scheme
• Benchmarking schemes against those already operating, for example, KeyRing and Home-Link
• Carrying out initial and ongoing cost-benefit analysis of preventive services against the costs of curative care
• Designing services around the needs of users rather than professionals
• Ensuring a 'whole system' approach influencing work practices of all relevant agencies
• Adopting appropriate terms and language, for example, 'help' not 'care'
• Helping people to manage their relationships with members of the local community
• Supporting people to minimise the risks of abuse or intimidation and helping people deal with any difficulties that do arise
• Monitoring services to ensure people can exercise true choice over the support they receive. The experience from the pilot schemes also shows up a number of dilemmas that providers need to overcome (see box).

Policy reform

Low intensity support helps shift the focus of community care from crisis management to crisis prevention. Even where crises occur, it helps to prevent them from taking a long-term hold on people's lives. Means-testing and rationing of services may make short-term sense to agencies with tight budgets. But it will often prove a false economy. Carefully planned, low intensity support services can even free up resources and time to help those with greater needs.