Piloting choice and control for older people: an evaluation

Heather Clark and Jan Spafford

New regulations have empowered local authorities in England to extend the scope of the 1996 Community Care (Direct Payments) Act to older people.

 This timely report evaluates an innovative scheme piloting new ways of giving older people greater choice and control over the services they use. The scheme provides a model for other local authorities wanting to find ways to change care management and implement direct payments for older service users.

Based on interviews with older users and care managers, Piloting choice and control for older people:

  • examines issues around the role of informal carers;
  • looks at older people's perceptions of the pilot scheme and their definitions of quality services;
  • draws out broader lessons for service delivery and for introducing direct payments for older people;
  • concludes with suggestions for positive change in provider organisations and the culture of care management.
Summary

Summary

Since February 2000, local authorities have been able to make direct payments to older people who are eligible for community care. In 1999 Portsmouth Social Services Department (SSD) piloted a scheme looking at new ways of delivering services to older people. It was hoped that the lessons learnt would be relevant to the implementation of direct payments for older people and, more generally, to increasing older people's choice and control over services. Heather Clark and Jan Spafford evaluated the pilot phase of the scheme and found:

  • The minority of older people who chose the personal assistant option received a high quality service. The main barrier in taking up this option was a lack of social networks to find someone suitable.
  • Care managers initially found it difficult to take ownership of the scheme. Pressures of work and time, and anxieties about how to offer it, when and to whom, contributed to this. Over time, enthusiasm increased as the benefits became more evident.
  • The pilot had a limited impact in addressing the low take-up of services by minority ethnic older people, but it helped to stimulate closer working with community workers in promoting the scheme and addressing wider issues.
  • The lack of a support scheme and a designated direct payments worker probably increased the pressures on care managers and resulted in lower take-up and less creative use of the scheme.
  • The role of informal carers in providing 'third party support' was not clearly defined. In some cases, carers seemed to use the scheme to increase their own choice and control.
  • The pilot highlighted tensions for care managers between promoting user empowerment and protecting users from 'risk' and exploitation; and between meeting individual needs better versus ensuring equity in the use of rationed resources.
  • The scheme benefited greatly from the commitment of the SSD internal working group and individual care managers, and a proactive policy of offering the scheme to all existing and some new service users.

Background

In 1999, Portsmouth Social Services Department (SSD) piloted a scheme to give older people more choice and control over their support arrangements. The scheme was not a direct payments scheme (the SSD did not make cash payments to older people and it retained the roles of purchaser of agency services and employer of personal assistants), but it operated closely to the policy and practice guidance on direct payments.

The research took place in the pilot phase. It aimed to learn about issues that older people might face when considering whether to take up direct payments, and that local authorities might face when implementing direct payments with older people and more generally when seeking to give older people more choice and control over services.

What the scheme offered

Older people assessed as eligible for statutory support and deemed 'willing and able' were offered the scheme. Those who accepted had their level of need translated into a number of hours of assistance and could choose who would provide the assistance: a personal assistant, an accredited independent sector agency, the local authority's Homecare service, or a mix.

The scheme offered the older person the ability to:

  • Negotiate with providers when their services were to be delivered;
  • 'Bank' unused hours for future use (up to a rollover limit of three months);
  • Use the service to meet those needs they deemed most important, provided there was a level of accord with assessed needs.

The SSD ensured that paperwork was as simple and non-bureaucratic as possible. The tasks were: completing a timesheet; calculating hours used and hours in hand; and sending the signed sheet to the care manager each month.

Take-up

The pilot lasted nine months, by which point 31 older people were using the scheme. Of the 31 care packages: 13 were managed by older people and 18 were managed by informal carers on their behalf; 2 were for older people from minority ethnic communities; 6 were for men. Seven of the 31 care packages were provided by a personal assistant, compared with 20 provided by an independent sector provider and 4 by the local authority's Homecare service.

Constraints on the SSD

The scheme operated under certain constraints. The inability to make cash payments at the time meant service users could not be direct employers of personal assistants and were in a weaker position with providers than would have been the case under direct payments. Moreover, the scheme had to operate within existing community care guidelines and cost ceilings. This, and the fact that the Independent Living Fund was not available to older people, posed additional constraints. The pilot also suffered from not having a direct payments support worker available.

Take-up by black and minority ethnic older people

Under-representation among statutory service users meant that few older people from minority ethnic groups were offered the scheme. By the end of the pilot, two had accepted. In both cases, informal carers managed the scheme on behalf of the older person. In one case the SSD agreed, as an exception, to employ the co-resident daughter of an older person to be his personal assistant. No provider had been able to supply a care assistant who spoke the older person's language.

Although the SSD had not sought to consult with minority ethnic older people in planning the scheme, important achievements were made in working closely with community workers to promote the scheme and to address the shortage of minority ethnic employees within statutory and agency provider organisations.

Language continued to be a barrier: the SSD interpretation services were overstretched and even care managers struggled to access them at times.

Support for older people and staff

At the time of the pilot, there was no independent or in-house scheme to support older people using or interested in the pilot, and there was no designated direct payments support worker available to help with the scheme.

The tasks of offering the scheme to older people and helping them decide fell to the SSD care managers; many had little experience of independent living options. An internal working group was set up to train and support them.

The tasks of supporting older people fell to informal carers. Where carers were not present, older people who were unable to manage the scheme without support were deemed unable to participate.

The role of informal carers

Informal carers could provide 'third party support' on behalf of older people who might have had difficulties in managing it alone. Sometimes the scheme was offered to older people and informal carers at the same time, occasionally to the informal carer directly. By the end of the pilot, informal carers managed over half the care packages operated through the scheme.

Some carers (and some care managers) saw the scheme as a way for carers to have more choice and control over arrangements. This was particularly apparent where respite or 'sitting' services were used, and where older people lived with adult children. A major perception was that giving carers more choice and control would enable them to continue their caring role. This raised questions about who was benefiting most from the scheme (service users or their informal carers) and about what constitutes appropriate 'third party support'.

Care managers' views

Some care managers were immediately enthusiastic about a scheme that would give older people more choice and control, and give them more time for developing imaginative solutions to meeting needs, and promoting people's independence. As the scheme progressed, the success of some encouraged others whose initial response had been more cautious.

However, care managers had to manage the scheme on top of their already heavy workloads. A widespread anxiety was how to offer the scheme. The SSD provided training and produced plain language information leaflets, yet several care managers worried about their ability to convey the scheme clearly.

Deciding when to offer the scheme was another worry. It was felt better to offer the scheme at reviews and reassessments, but this was problematic where older people did not engage with the offer because:

  • They were worried that care managers might reduce care hours or change the care assistant they liked;
  • The review or reassessment was sometimes carried out by a care manager they had not previously met;
  • There was not enough time and support for older people to clarify what the scheme and the different options would mean for them.

Care managers would have preferred to offer the scheme over several visits, but this seldom happened due to workloads. Care managers also worried that where older people had only reluctantly accepted help from the SSD an offer of the scheme might unsettle them to the extent that they decided not to accept services at all.

'Willing and able'

Some care managers were unsure about their role in deciding whether an older person was eligible - 'willing and able' - to participate. It was difficult to get a clear idea of how different care managers interpreted the eligibility criteria. Some identified 'unwillingness' where older people declined the scheme or seemed unclear about why it was being offered. Most determined eligibility on the basis of their perceptions of the older person's 'ability' to be in charge of their own support arrangements. Some used a narrow measure to determine this, such as understanding charging policies.

Almost all care managers regarded people who lived alone and had dementia or were very frail as ineligible. Here, the presence of an informal carer to provide 'third party support' was seen as crucial for admittance to the scheme. Some older people were immediately identified as 'ideal' because they were assertive about their likes and dislikes.

Older people's views

Accepting the scheme
There was no straightforward link between levels of satisfaction with services and the decision to accept the scheme, although a few did accept the scheme because they were dissatisfied. Several people accepted because it enabled them to 'bank' hours and use them when they wished. The realisation they could use them how they wished came later through negotiations with the care assistant or personal assistant about what they wanted, such as getting out to the shops or housework.

Mrs Patrick is a widow in her 80s. She chose the scheme because:
"It puts me in control of my life. You see, I'm not at the mercy of any bureaucrats. I say what I want and if I don't want somebody I ring up and say I don't want them. ... It's the fact that I know that I could call on them if I need them; but if I don't need them, I don't want them."

Declining the scheme
Some of those who declined the scheme, and even some who accepted, were unclear about what it offered. Many did not know about the 'personal assistant' option or the potential for saying which tasks they wanted done. Care managers' initial uncertainties and the lack of a support scheme probably contributed to this. In one case, a care assistant who had not been fully informed about the scheme dissuaded an older person from accepting it.

The main reasons for older people explicitly declining the scheme were: feeling satisfied and in control of their current service; not wanting to lose care assistants with whom they had a good relationship; worry about back-up support to cover periods of absence; and fears about losing a care manager to negotiate with the agency on their behalf: as one couple explained "we feel so alone when things go wrong" that having a care manager seemed a crucial safeguard.

Choosing the personal assistant option
A minority of older people chose the 'personal assistant' option. Those who did subsequently enjoyed a high quality service. They found their assistants through personal contacts. However, most people felt they did not know anyone suitable or even anyone who could recommend someone, and therefore rejected this option since advertising was felt to be unsafe.

Mrs Constable, a widow in her 80s, had experienced lack of continuity of care assistant and unreliability. Her care manager suggested the personal assistant option; her neighbour recommended June. They "clicked immediately": "I don't quite know why but somehow you do get that feeling that you've got a bit more say in it. You haven't got too much say when the council send you a carer. It's the same thing in a sense and yet it's different ... you feel different."

Choosing the provider agency option
None of the older people interviewed who chose this option changed provider agencies. This was seen as not worth taking on: it was difficult to know which agency provided a good quality service and whether their charges were reasonable. Older people who chose this option pointed to the backup that agencies provide to cover periods of absence.

Views of provider organisations

Independent sector providers were concerned about:

  • Not being able to meet the scheme's promise of flexibility of time and continuity of care assistant (even though they would have wished to);
  • Losing good staff if older people asked care assistants to become personal assistants;
  • Care assistants undertaking tasks (like cleaning) without the explicit approval of the care manager;
  • Higher costs involved in operating according to the scheme;
  • Insurance and employer liability issues.

Tensions for care management

The pilot was intended to support a change in care management towards promoting user empowerment. Signs of such a culture shift among some care managers were clearly visible. So were tensions, such as those between:

  • Meeting individual need versus equitable use of rationed resources;
  • Promoting user empowerment versus protecting users from 'risk'.

There were concerns that older people on the scheme would use their services for tasks other than for assessed needs of personal care, and that this could amount to an 'inappropriate' use of resources in a context where finite resources demanded rationing. This seemed unfair to people who had declined the scheme or were ineligible.

There were also concerns about how to protect older people from abuse or exploitation by personal assistants; from the increased stress that managing one's own (or a family member's) support might entail; or from older people leaving themselves at risk through neglecting personal care needs.

About the study

The research evaluated the pilot stage of the scheme using in-depth and loosely structured interviews with 36 older people and/or their informal carers in their own homes. Other participants included care managers, team managers, statutory and independent sector providers, the Community Development Resource Team and minority ethnic community workers. Ongoing consultation was undertaken with the SSD's internal working group attached to the scheme and with a local organisation of disabled people.

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