Research Policy and Planning: The journal of the Social Services Research Group – Vol 18 (2) 2000
Direct Payments and Older People: the principles of independent living
Frances Hasler, Co-Director, National Centre for Independent living; Gerry Zarb, Director of Disability Research Programme, Policy Studies Institute
The paper begins by looking at some of the broader issues around independent living (IL) and older people (eg what is known about appropriate models of IL, older people’s views on direct payments and other IL options). The main part of the paper focuses on the extension of the Community Care (Direct Payments Act) to older people, drawing on research carried out by PSI and others, the recent practice guide on local authority implementation of direct payments produced by PSI and NCIL, as well as NCIL’s development work on IL and older people. The paper then considers the specific issues of. interpreting key direct payments criteria such as consent and ‘willing and able’; models of assessment compatible with IL principles and putting in place appropriate forms advice and support to enable older people to manage their own support arrangements.
Direct payments are a means to an end. That end is independent living. Every aspect of a direct payment system needs to be geared to enabling disabled people to achieve maximum choice and control in their everyday lives. Independent living means different things to different people. However, two defining concepts mark independent living from other approaches to meeting disabled people’s support needs: choice over where to live, how to live, who provides assistance and control over who assists, when and what they do.
Independent living is not living by yourself, or doing everything for yourself, it is having access to the support you need, in ways you choose. The new Guidance to the Act, published in February of this year, makes this clear:
Consideration should be given to looking at how people could use a direct payment to regain or retain their independence, and live in their own home, for as long as possible [and] how direct payments might aid preventive and rehabilitative strategies.
For each person, independent living can change over time, as their experience grows and their circumstances change. These basic principles apply equally to all disabled people – young and old alike. Just like their non-disabled peers, the kind of lifestyle choices which older disabled people make will quite possibly differ from those of younger people. Their preferences about the kind of practical arrangements needed to support these choices might also differ in some respects from those of younger people. As Ann Macfarlane points out:
Older disabled people’s expectations may be different from younger disabled people … Many disabled people are content with their once-a-week outing for a hairdo and do not want necessarily to take on board or understand the issues that have prevented them from leading more independent lifestyles. They iust want to be able to get their own cup of tea and feed the cat. [1991, p.18]
But none of this implies that the basic goal of living independently is valued any less by older people, nor that the essential principles of how to go about enabling independent living will be any different from other groups of disabled people.
Interpreting ‘Willing and Able’
One of the most important issues will be the basis on which older people are willing and able to manage their own payments. Research on older disabled people’s views on independent living (including the possibility of direct payments) indicates that a significant proportion of older people may, initially at least, be unsure about the suitability of this option. It also shows that, compared with younger people, there is a greater likelihood that older disabled people will prefer a slightly more structured support arrangement than the archetypical ‘hire and fire’ model where the user takes on full responsibility for every detail of managing their support. We also know that the concept of independent living will often be alien to many older people from ethnic minority communities.
All of this has important implications for both assessment and support systems. A fundamental part of the assessment for eligibility for direct payments is deciding whether the person is both willing to accept a payment instead of a service, and able to manage the payment, alone or with assistance:
- willing equals choice and control;
- able equals accountable;
- able to ‘direct` is more important than able to ‘manage’.
In assessing these criteria, a critical issue is the role of support for the service user. Being ‘willing’ or ‘able’ are not fixed states, they are determined by the amount of support (information, assistance etc) available to individuals, their individual expectations and their personal experiences.
For some people, assessment of their being ‘willing’ (ie choosing) to have a direct payment may initially be hard to determine. For example, this may be the case with people who have cognitive/communication impairments, or people who live in a family setting where a family member appears to be making decisions on behalf of the service user. It is a]-so likely to be true for older people who are not familiar with the idea of independent living.
At a minimum, assessment of the service user and his/her ‘carer’ should be carried out separately (as specified in existing care assessment guidance and the Corers’ (Recognition and Services) Act, 1995). Involving an independent advocate may be the only method of establishing genuine consent in some cases. Older people who are not familiar with the idea of independent living will need to be given enough advice and information to help them to choose and – most importantly – time to make up their minds. New Department of Health guidance recognises this:
People … may have little real knowledge about their current services, how they operate, who pays for the services or who controls the spending. Information about direct payments may be meaningless if people do not understand the system they are replacing. In addition, people … may have little control over their current services and may not even be aware that they have choices. To be effective, therefore, information about direct payments needs to include enough information about services provision for people to realise the choices on offer The new Guidance reflects research, by ourselves and by colleagues at Values into Action, into the implementation of direct payments.
Alone or with Assistance
Some older people may need considerable help with managing either money or workers. It is important not to view the need for assistance as a problem. Keep in mind what payments are for – focus on how to make them work. A person can have as much (or as little) assistance with managing a payment as she wants.
There are a number of ways in which appropriate assistance can be provided; through advocates for example – a trusted personal assistant who tackles paperwork, scheduling etc on behalf of the service user – or family members. But it is essential to establish if this is what the service user wants, if we are to avoid re-creating a dependency relationship. Service users also need to have a real choice: there has to be an alternative to family help available. The new Department of Health Guidance has suggestions on this:
People may receive assistance with managing the money. The payment may be made to a third party as agent for the user and detailed management of finances may be delegated to an agent, but the person for whom the direct payment is mode must have control over how support is delivered to meet their assessed need. Direct payments may also be provided through someone with power of attorney for the user or a user-controlled trust, for example in certain cases where the user has a cognitive impairment or mental health problem. Local authorities should satisfy themselves that the relationship between the user and the agent will honour the spirit of independent living before direct payments begin. [our emphasis]
Assessment for Direct Payments
In one sense, the assessment for direct payments is straightforward: it is simply good practice in community care assessment with an extra item added to the ‘menu’ of ways of meeting assessed need. As the Department of Health Guidance says:
There is no difference in the assessment of needs between services and direct payments. Authorities should ensure that their information makes this clear
In another sense, assessment for direct payment requires a new relationship with service users, a new approach to the allocation of community care resources. In an era of tightly controlled budgets, assessment becomes a mechanism for rationing as well as for the allocation of a service. What is ‘good practice’ in this situation?:
- needs-based not task-based;
- allocation of flexible resources not fixed services.
The Department of Health Guidance makes the following comment on assessments:
it is important that the needs-led focus of the assessment is retained and that the user and, with the user’s agreement, any informal carer, should be involved throughout the assessment process … The assessment of needs, and decisions about how these needs should be met should be seen as part of one process.
A direct payments assessment must be truly needs-based. An assessment based on the usual service context (eg ‘needs day care’) will not work. This does not mean that everything the service user wants can be provided for. The overall level of ‘service’ should be the same whether this person opts for conventional services or for direct payments. But equally it does not mean that the overall pattern of service should be the same.
Given that independent living options for older people have generally been quite limited, it is not surprising that many will never have considered the possibility of managing their own support. This means that a greater proportion of time will need to be spent – as part of the assessment process – on explaining the direct payments option; identifying any concerns which people may have about the idea and exploring ways in which these may be overcome.
Expressions of initial uncertainty about direct payments should not automatically be taken as indicating the unsuitability of this option. Rather, this should signal a need to find out what it is about the idea of direct payments which may be causing concern, and then trying to identify what kind of practical support may enable people to address any concerns they may have. Research has shown that, when the option is explained fully and people have been able to consider it in their own time, many older people may well respond very positively to the benefits which direct payments can offer.
Older People Using Existing Payment Schemes
There are two groups of older disabled people whose needs may need to be considered in the context of decisions about both eligibility for, and the suitability of, direct payments. The first group is those who may have already been receiving payments under an existing third-party scheme prior to the Community Care (Direct Payments) Act. The second is new users aged 65 or older who will become eligible to receive direct payments in the near future. The relevant considerations relating to these two groups are sometimes quite different, although there are also several common issues which would need to be taken into account.
For existing service users, particular care needs to be taken when carrying out any assessment reviews when people reach the age of 65. One of the problems which can occur in this situation (depending on the particular organisation of generic services within an authority) is that reviews are automatically triggered when people reach an age where they may become the responsibility of a different service team. For example, a switch in responsibility from physical disability to older people’s services may trigger a review even though there may not have been any other objective change in an individual’s circumstances. While such reviews may be useful in some respects, it is of paramount importance that continuing suitability for direct payments is assessed in exactly the same way as for any other service users. It should most definitely not be assumed that age alone will make any difference to whether or not an individual either wants, or is able, to continue managing his/her own support.
Particular care should also be taken when dealing with people who may have been living independently for some time but who subsequently experience changes in personal and/or domestic circumstances in older age. Any suggestion that direct payments may no longer be a suitable option is likely to be perceived as a threat to their independence and may therefore be a source of great anxiety. In view of this any assessment reviews with older people who fall into this category will need to be carried out with a great deal of sensitivity.
One issue affecting both existing and new users is the policy of applying a cost ‘ceiling’ to individual care packages. In most authorities this is pegged to the equivalent of residential care costs, the rationale being that spending more than this is not ‘value for money’. Older people are not eligible for Independent living Fund to supplement a care package. This can mean that older people are denied the chance to live independently.
The government has taken note of the problem and has pledged to take action. The Fair Access to Care initiative (part of implementing Modernising Social Services) explicitly says that cost ceilings that lead to unnecessary loss of independence should not be used. A recent speach by Minister John Hutton referred to the same topic and promised guidance on it:
Many authorities are setting a financial ceiling on their domiciliary care packages, which can lead to premature admission to care homes when care at home would have been more suitable. [Modernising Social Services]
Support services are perhaps the most fundamental part of a successful direct payment scheme. As the Department of Health Guidance argues: ‘developing a support service is a prerequisite of a successful scheme’. The purpose of direct payments’ support services is to ensure that adequate advice, information and support is available to disabled people so that they feel confident to undertake the complexities of using direct payments to employ and manage their own staff.
Such support also ensures that individuals using a direct payment are operating legally and efficiently. It has been shown that, in regions where disabled people are receiving and managing direct payments successfully, there is an established support service. Again, as the Department of Health Guidance points out:
A support scheme will offer information, advice, peer support and training, for example in budgeting skills, as a minimum starting point. A support service may also be able to provide practical assistance.
In some cases, it may be appropriate to include an element of advocacy within an individual support package to enable an older person to manage direct payments effectively. This could be particularly relevant for people who may have been living in an institutional setting, those who want to try direct payments on a trial basis and people who also have cognitive impairments. As with other groups for whom advocacy may be appropriate, the basic aim is to enable the individual to retain essential control over his/her support while providing practical assistance with particular aspects of managing direct payments as required.
Alternative Support Arrangements
As suggested earlier, while they are no less likely to value the benefits of independent living, some older people may well want to have a slightly more structured arrangement for managing their support. In practice, they may be less inclined (compared with younger groups) to want to take on all the administrative aspects of direct payments such as arranging insurance, dealing with PAYE and so on. There is no reason however whey these aspects could not be dealt with on a collective basis – for example, through provision of block insurance policies or use of a payroll bureau – as part of any support system run, or commissioned by, the local authority. Some people may of course prefer to use their payments to purchase agency support for similar reasons.
In some areas the support scheme takes the employer role, acting in effect as a recruitment agency for personal assistants. Typically, the disabled person specifies, selects and supervises the worker, with help if needed, and the agency pays the wages, and sets the conditions of service. The main advantages of this system is that it gives service users choice and day to day control over workers, but relieves them of all the responsibilities of being an employer. This is likely to be particularly attractive to older people who do not want to take on this kind of responsibility directly. The main disadvantage is that it can restrict choice – for example if the agency sets terms and conditions for all its staff, individual users can not vary these to suit their circumstances.
Some support services are trying to develop new systems which provide the advantages of an agency with fewer of its disadvantages. They describe this as a shared or ‘partnership’ approach to personal assistance employment. Another possible arrangement is to set up a local pool of personal assistants (employed by an independent agency) which people receiving direct payments can call on as and when they need to (up to the total number of hours they have been allocated). A formalised system of this kind of on call support was trialled in the London Borough of Haringey between 1991 and 1993. This model -which was based on research on older people and independent living – provided a significant degree of flexibility, choice and control for users.
NCIL has identified a number of factors affecting the successful implementation of direct payments. We believe these apply equally to extending direct payments to older people:
outreach – so people get to know about the option (leaflets are not enough);
local support – for all the reasons we have mentioned earlier;
enthused and informed care managers – so that referrals are made for direct payments;
holistic and realistic community care assessments -so that the overall package is workable.
Direct Payments and Older People: Resource list
Community Care (Direct Payments) Act 1996 – Policy and Practice Guidance: The Department of Health, free from Department of Health, PO Box 777, London SE1 6XH or http://www.dh.gov.uk/PublicationsAndStatistics/Publications/
A guide to receiving direct payments, The Department of Health, as above, HMSO: London Direct Routes to Independence – a guide to local authority implementation and management of direct payments, Hasler, Campbell & Zarb, PSI/NCIL, February 1999, £10 from Grantham Book Services, Isaac Newton Way, Grantham, Lincs NG31 9SD (tel 01476 541 080)
Personal Assistant Employer’s Handbook, produced by ILSA (the Integrated living Scheme of West of England Centre for Integrated living (WECIL Ltd)), January 1998, £10+£2 p&p to disabled people and organisastions of disabled people or £20+£2 p&p to all others, from ILSA Team Administrator, WECIL, Leinster Avenue, Knowle, Bristol B54 1 AR (tel 0 117 9839839)
PA Management Skills – Training and Resource Manual, £45 including p&p, Greenwich Centre for Independent living, Christchurch Forum, Trafalgar Road, Greenwich, London SE 10 9EQ (tel 0 181 305 2221) (resource guide to enable trainers to deliver training in personal assistant management skills)
Personal Assistant Users Newsletter, the newsletter of the BCODP (independent living Sub-Committee), available from NCIL, 250 Kennington lane, London SE1 1 5RD (tel 0171 587 1663) or www.bcodp.org.uk/ncil (essential for up-to-date funding news, debate and networking)
Factsheet on direct payments, Age Concern England, available from ACE, Astral House, 1268 London Road, London SW16 (tel 020 8992 0898)
Background reading and other useful publications
Ageing with a disability – what do they expect after all these years, Zarb & Oliver, University of Greenwich, £8.50, a study of growing older with disability, available from University of Greenwich, Avery Hill Campus, Bexley Road, London SE9 2PQ
Controlling Your Own Personal Assistance Services, an NCIL/BCODP publication (new edition) 1997, available from NCIL, £2.50+£1 p&p (nb make cheque payable to BCODP) (free to disabled individuals on receipt of an A4 envelope stamped with 39p)
Cashing in on Independence: comparing the costs and benefits of cash and services, by Gerry Zarb & Pamela Nadash, published by BCODP/PS1 1994, £5.75 including p&p, available from BCODR Litchurch Plaza, Litchurch Lane, Derby DE24 8AA (tel 01332 295551) (detailed analysis of the costs and quality of payment schemes and direct service provision)
Disability-Related costs and Charges for Community Care, by Ann Kestenbaum, published 1997 by DIG, Unit 5, Archway Business Centre, 19-23 Wedmore Street, London NI 9,4RZ, £9.50 including p&p, (research study challenging local authorities to think anew about their charging policies, suggests a formula for assessing an individual disabled person’s ability to pay)
Older People’s Perceptions of Direct Payments and Self-Operated Support Schemes, by Colin Barnes, published January 1997, BCODP Research Unit, The School of Sociology and Social Policy, University of Leeds
Taking care in the market. a study of agency homecare, by Ann Kestenbaum (2nd edition) 1993, published by DIG and RADAR, £5.52 (examines the market for domiciliary care in one region of the country and explores users’ perspectives of agency care and the services which the homecare market could deliver)