Individual budget users and carers

An examination of a major study on the implications of individual budgets for carers. By academic Jill Manthorpe

Title: The Individual Budgets Pilot Projects: Impact and Outcomes for Carers, February 2009, University of York, Social Policy Research Unit, Working Paper No 2298, www.york.ac.uk/spru

Authors: Caroline Glendinning, Hilary Arksey, Karen Jones, Nicola Moran, Ann Netten and Parvaneh Rabiee

Affiliations: University of York

Under the banner of personalisation in social care, individual budgets (IBs) were designed to bring together public funds to give people greater choice and control over their own support. They were piloted in 13 local authorities and were highly influential in formulating the concept of personal budgets. Unlike personal budgets, IBs were meant to enable several streams of pubic money to be brought together.

IBs may seem like the distant past when things are moving fast but they were key in confirming policy direction and the rapid roll out of personal budgets.

While there are many ways in which personal budgets can be provided, one of the main ways is through a direct payment. This research is the first to examine the impact on carers of people receiving IBs and the outcomes for carers of this new approach.

METHODS

The study was designed to answer the questions: how much and what support is provided by carers following the award of an IB? Are there patterns in these changes, for example, among particular groups of carers or among carers supporting specific service users? Do IBs affect the well-being and quality of life of carers, compared with carers (and service users) who receive conventional services?

This research was a substantial add-on to the main Ibsen evaluation. It interviewed carers of people who had been offered IBs and a comparison group who had not. It used the same measures as the main Ibsen evaluation, plus one specifically to assess the impact of care-giving. The interviews took place between December 2007 and May 2008, after data collection for the main Ibsen study had been completed. Some interviews explored issues in more depth. The research team also asked social services’ IB project leads about how carers’ issues were being dealt with when implementing IBs.

The researchers focused on the two largest groups of carers likely to be affected by IBs: those of older people and of people with learning disabilities. As a result, nine of the 13 IB pilot sites were included in this study and 163 carers supporting all of the four main groups of service users were interviewed.

Another recent study, conducted by Carers UK, reported that direct payments could have a positive impact on carers. The support they purchased through direct payments was generally better at meeting the needs of the disabled person; was more flexible; and gave carers more free time. Just over half said their overall experience of direct payments was positive. But no details were given of the number of carers participating in the survey or how they were recruited.

FINDINGS

Since the year 2000, carers have been able to receive direct payments in their own right, although take-up of direct payments by carers has been low and variable. The revised English national strategy for carers, Carers at the Heart of 21st Century Families and Communities, (Department of Health 2008) promises that over the next few years every person using social services, including carers, will be given a personal budget. It makes a commitment to greater flexibility in how personal budgets and direct payments can be used or deployed.

The IB research suggests that this is beneficial for many carers. IBs were associated with positive impacts on carers’ quality of life, social care outcomes and psychological well-being. Two-thirds of carers had changed their views on what could be achieved in their lives following the offer of an IB to the person they were supporting. The research says: “On balance, carers of IB users also tended to express satisfaction with the level of the IB; the IB deployment arrangements; and the amount of paperwork the IB involved”.

Not everything had changed of course: “Carers supporting IB users were slightly more likely to be satisfied with the support planning process, compared to carers of standard social care service users – but a substantial proportion of both groups also expressed some dissatisfaction”.

The study revealed some issues that need resolving at policy and practice levels.

● Practice differs in respect of different groups of carers.

● There is a need for clearer guidance for carers who take responsibility for managing an IB on how and what this can be spent on.

● Agreement is needed about the extent to which carers and other family members can be paid from the IB of a service user; the conditions (such as employment contracts), if any, that should be attached to such payments; and the effects of payments on carers’ entitlements to social security, housing and other benefits, as well as tax considerations.

The day-to-day management of IBs can often be confusing. Carers were uncertain about what to do if they had not spent all the IB that they were managing – would they lose this if it was unspent? Was it alright if they paid people in cash or did they have to do this by cheque? Could they employ whomsoever they or the service user wished?

Only a small number of carers received payments from the service users’ IB, which could contribute to positive outcomes for the IB user by reducing feelings of dependency and obligation. How much carers were paid varied – ranging from the equivalent of a part-time job to small amounts covering carers’ expenses. Carers who managed an IB on behalf of a relative understood the risk of conflict of interest when paying themselves out of the IB.

Analysis

Before the IB study, Carers UK advised local authorities to:

● Speed up the application process and try to avoid long waiting times for decisions and complicated assessment processes. In their survey a quarter of carers had waited more than a year from making an enquiry to getting a direct payment under way.

● Make it a real choice and not pressure carers into accepting them.

● Provide employment support through third party organisations to help with payroll and so on.

● Ensure the sum provided as a direct payment is enough to meet assessed needs.

● Allow people to employ family members.

● Help with back up and emergency plans.

● Compensate and train carers’ for the time spent in administration.

● Keep commissioning specialist services.

These points are based on their survey of carers who had received direct payments on their own behalf or are working with them on behalf of a family member.

The rigorous IB evaluation allows us to see if these points are applicable more widely, especially in places where personal budgets or IBs were becoming more common and where there had been substantial interest and investment in their promotion. In many ways, these experiences were confirmed. Carers find IBs often very helpful but need support to make them work.

CONCLUSION

The IB carers’ research is an important study. Like the main IB evaluation, there are many answered questions and what happens to people over time will be particularly telling. What will be the effect of legal changes on the ways in which carers can deal with other people’s money? How far are brokerage and other support services becoming sustainable?

Carers UK may need to repeat its survey and the rigour of the IB carers’ study provides a wealth of research approaches that could influence other studies. Further explorations of practice may help social workers manage the questions that emerge about personal budgets so that they can accurately inform carers, services users and wider circles of support.

Jill Manthorpe is professor of social work and director of the Social Care Workforce Research Unit, King’s College London. She was a member of the first IB research team

Resources

● Glendinning, C., Challis, D., Fern‡ndez, J., Jacobs, S., Jones, K., Knapp, M., Manthorpe, J., Moran, N., Netten, A., Stevens, M. and Wilberforce, M. Evaluation of the Individual Budgets Pilot Programme: Final Report (the IBSEN study), 2008, Social Policy Research Unit, University of York, York.

● Choice or core? CarersÕ experiences of Direct Payments, Carers UK, 20 Great Dover Street, London SE1 4LX. Tel: 020 7378 4999 Fax: 020 7378 9781, Email: info@carersuk.org Web: www.carersuk.org