If certain conditions are met, local authorities have a duty to make direct payments to people, so that the latter can purchase their own non-residential community care services – rather than have the local authority provide or arrange them. The conditions are, in summary, that the person has an assessed eligible need, that the service to be purchased will reasonably meet that need, that he or she consents to the payment, and that he or she is able to manage the payment with or without assistance. The overall stated purpose of direct payments is to give service users greater independence and control over their daily lives.

Since they were introduced about ten years, the number of direct payments has remained relatively small. This has disappointed central government. Because of this, it is now introducing a system known as individual or personal budgets. This is expected to be applied to all those people eligible for community care services. It provides an option whereby a person is allocated a particular sum of money, according to their community care needs. The person can then choose how they would like their needs met. They can opt to manage the money directly by means of a direct payment, or choose instead what could be called a virtual budget and request the local authority that a broker (such as a social worker or independent organisation) should arrange the services. With this latter arrangement, the person does not have to control the money directly.

However, the introduction of individual budgets is, at the time of writing, being implemented with no new legislation or even definitive, statutory guidance from the Department of Health. This means that to describe individual budgets precisely is not straightforward . Furthermore, it is not entirely clear how certain key elements of individual budgets – in particular self-assessment of need, service users themselves determining how their (self-assessed) needs should be met – are consistent with existing community care legislation and guidance.

In addition, at the time of writing, the legal rules about direct payments are due to change, allowing somebody else to be the recipient of a direct payment when the disabled person is unable to consent to it.

INFORMAL CARERS

Various pieces of social services legislation now make provision for informal carers. In summary, informal carers providing substantial and regular care, and who request an assessment, have a right to have their ability to care assessed. Carers’ involvement in (or wish to do) work, training, education or a leisure activity must also be taken into account in the assessment. The local authority also has a duty, having carried out an assessment, to decide whether such an informal carer requires services. However, the legislation does not contain a duty to provide any such services, but only a power.

The lack of duty actually to provide services means the legislation is arguably flawed, since informal carers appear to be taking on ever more of a caring burden. This seems particularly to be so, as local authorities apply stricter eligibility criteria under their ‘fair access to care’ policies, and are assisting ever fewer people. At the same time, the NHS has closed significant numbers of rehabilitation and recuperation beds for older people and is pursuing a policy of ‘care closer to home’, including in people’s own homes. Inevitably greater burdens fall on informal carers, especially since there is little evidence that the NHS is adequately resourcing its community health care teams. On the matter of carers, legislation applying to the NHS is all but silent.

CHILDREN IN NEED AND THEIR FAMILIES

Under the Children Act 1989, local authorities owe a general duty toward children in need (including disabled children) and may provide services also for any member of the child’s family. Therefore, in considering the legal basis for meeting the needs of disabled children and their families, or disabled adults with children, local authority staff will sometimes have to carry out assessments under both adult community care legislation and under the Children Act.

OTHER GROUPS OF PEOPLE

The Department of Health has issued specific guidance in relation to specific groups of people; these include, for example, deaf-blind people, people with learning disabilities, people with HIV and people with drug or alcohol problems.

13.1 DIRECT PAYMENTS: OVERVIEW

Legislation obliges local authorities to give service users money, by way of ‘direct payments’ to purchase their own services, rather than have the local authority arrange the services. This obligation is triggered if certain conditions are met in any individual case. Department of Health guidance states that the overall purpose of direct payments ‘is to give recipients control over their own life by providing an alternative to social services provided by a local council’ (DH 2003c, p.3).

The duty to make direct payments extends to older people as well as other groups of service users; however, a study published in 2004 questioned the extent to which such payments were making possible greater independence when compared with payments made to other groups of service users. This was because older people’s social and leisure needs were not deemed by local authorities as essential or ‘eligible’ as they would be for other adult groups; despite the fact that this was contrary to Department of Health guidance (LAC(2002)13, para 12) on ‘fair access to care’ that cautioned against such discrimination (Clark et al. 2004, p.56).

More widely, it has continued to be reported that uptake of direct payments in general has been slow. This has been attributed to a number of factors, including a lack of clear information, unawareness on the part of local authority staff, restrictive or patronising professional attitudes, inadequate advocacy and support services, inconsistency between the legislation and local practice, excessive paperwork. In addition, there have been difficulties in the recruitment, employment and retention of personal assistants, and in assuring quality (CSCI 2004, p.5).

There have been consistently reported problems with banks, which are reluctant to allow direct payment recipients to open separate accounts, owing to queries about people’s capacity, their credit rating, ability to sign cheques and so on (see e.g. CO, DH 2005). In principle these difficulties are not insuperable; for instance, banks should accept a letter from social services confirming that the person is capable of managing the account (BBA). And instead of signatures, rubber stamps can be used or, for example, electronic banking or standing orders (Mullen 2006).

Despite these reported difficulties, central government has consistently encouraged local authorities to increase the numbers of people receiving direct payments (DH 2004f). It has also included direct payments amongst the performance indicators, the targets, which local authorities are told to hit. This has brought about greater numbers of direct payments. It appears to have resulted in some local authorities making direct payments unlawfully to some people who lack the ability to consent or to manage the payment (even with assistance). Nonetheless, after a decade, uptake has remained relatively limited. Disappointed at the relatively limited impact of the direct payments policy, central government has introduced a new system of individual budgets. These are intended to encompass direct payments, as well as give service users greater control of meeting their needs in other ways. In addition, the legal rules about who is permitted to receive direct payment are being broadened.

13.1.1 ELIGIBLE GROUPS OF PEOPLE FOR DIRECT PAYMENTS

Eligible for direct payments are community care service users aged 18 or over with an assessed eligible need and informal carers aged 16 or over for whom the local authority has decided services are called for (Health and Social Care Act 2001; SI 2003/762). Also eligible are the parents of disabled children, disabled parents of children, and children aged 16 or 17 years old. In the last three categories, the child in each case has to be a child in need under s.17 of the Children Act 1989, for whose needs the local authority has decided services are called for (Children Act 1989, s.17A; SI 2003/762).

There is a number of exclusions relating to mental health and criminal justice legislation. In summary, the exclusions are: (a) patients detained under mental health legislation on leave of absence; (b) conditionally discharged detained patients subject to Home Office restrictions, status; (c) patients subject to guardianship under mental health legislation; (d) people receiving aftercare or community care that is part of a care programme initiated under a compulsory court order; (e) offenders serving a probation or combination order, or offenders released on licence, subject to an additional requirement to undergo treatment for a mental health condition, or drug or alcohol dependency; (f) people subject to equivalent restrictions in Scottish mental health or criminal justice legislation (DH 2003c, annex C; see SI 2003/762 for details). However, draft regulations issued in August 2008, propose that local authorities – rather than be prohibited as at present – should instead have a power (but not a duty) to make direct payments to individuals subject to this mental health legislation (DH 2008e).

13.1.2 CONDITIONS TO BE MET FOR DIRECT PAYMENTS

The conditions that have to be met for a direct payment to be given are as follows:

•The person has to have an assessed, eligible need (Health and Social Care Act 2001, s.57; Children Act 1989, s.17A).

•The local authority must be satisfied that the service can meet the relevant need or, in the case of child-related services, the welfare of the child concerned will be safeguarded and promoted (SI 2003/762).

•The person must consent (Health and Social Care Act 2001, s.57; Children Act 1989, s.17A). This implies both ability or capacity to do so and willingness.

•The person must be able to manage the payment with or without assistance (SI 2003/762).

If all these conditions are met, a duty arises. The prior requirement that the local authority must first have decided that services are called for in the individual case – that there must be an assessed, eligible need – indicates that direct payments are not a ‘back door’ route to services, which the person would not otherwise be eligible for. In other words the normal rules of assessment and eligibility apply (see Chapter 6).

Nonetheless, with this hurdle surmounted, there is a duty. Thus, when a woman was already receiving direct payments, she nonetheless required additional care. The local authority determined to provide this through an agency, but did not explain to her that she was entitled to receive all her care via direct payments. This failure was found by the local government ombudsman to be maladministration (Ealing LBC 2008). Another common way in which local authorities have sometimes sought to evade the duty to make a direct payment is simply to drag their feet. In the same case, a request for an increase in a direct payment was made in March 2005, not presented to the local authority’s resource allocation panel until October, and then referred for further investigation and reconsidered in December. The required package of care was not implemented until May 2006. This was too long and was held to be maladministration.

13.1.2.1 Consent of direct payment recipient

Department of Health guidance points out that blanket assumptions should not be made about whether certain categories of person will or will not be able to manage direct payments. The guidance goes on to state that assistance might include, for instance, keeping records, management of day-to-day relationships with staff or using a payroll service; the assistance itself might be bought in (DH 2003c, paras 47, 52). Therefore the question would be whether, overall, the recipient could control what was happening, even if he or she could not necessarily handle the day-to-day administration.

Managing a direct payment with assistance. A complaint was made to the local ombudsman. A woman with learning disabilities visited the family home at Christmas and decided not to return to her residential placement. The father wanted the council to pursue the possibility of a direct payment in combination with Independent Living Fund money so that she could live nearby. The council initially refused direct payments on the ground that she lacked the capacity to manage such payments without assistance. This was maladministration (Hertfordshire CC 2003).

The organisation, Values into Action, provides pointers to thinking through the question of consent and control in the case of people with learning disabilities; although it also makes the point that direct payments are not the only way of enabling people to achieve greater independence (Bewley 2002, p.5).

If a person does not agree with the local authority about his or her capacity to manage, the guidance states that the person should have access to an advocate and that arbitration should be available (DH 2003c, para 54). In addition, it might be that a person could manage some services and not others, or simply wish to manage some but not others. This would not prevent the making of a direct payment, since a person’s needs could be met in part by the making of a direct payment, and in part by directly provided services arranged by the local authority (DH 2003c, para 50).

Local authorities should pay attention to these rules; a failure to do so could result in the local authority being deemed to have employer responsibilities. The following employment tribunal case, albeit drawn from a slightly different context, is illustrative:

Local authority as employer. Two people with learning disabilities ostensibly had a contract with a personal assistant, who was paid with money from the Independent Living Fund (a grant-giving body) and from a local authority social work department.

The assistant was bringing a case against her employer, based on allegations of sex discrimination and breach of contract, but was unsure who her employer really was. An employment tribunal held that because the local authority retained overall control of the situation in a number of respects, and that conversely the two people with learning disabilities appeared to take little responsibility, the local authority was in reality the employer. In other words, with or without assistance, the disabled people were not managing the payment. The tribunal’s decision was upheld on appeal (Smith v South Lanarkshire Council).

13.1.2.2 Consent of somebody else: change to the law

At the time of writing, consent to receiving a direct payment cannot be given by anybody else other than the service user (Health and Social Care Act 2001, s.57). For instance, in one case involving two adult sisters with profound learning disabilities, it was clear to the judge that a direct payment could made to neither the women themselves nor their parents (R(A&B) v East Sussex CC (no.1)).

Department of Health guidance also states that, in its view, a person operating an enduring power of attorney could continue to receive direct payments on behalf of a person who had already consented (before loss of the requisite capacity). However, such an attorney could neither provide the original consent nor continue to receive the direct payments if, on review, services change (DH 2003c, para 59). This is because enduring powers of attorney relate only to property and financial affairs, not to welfare decisions.

However, the law is due to change. The Health and Social Care Act 2008 provides for another person, the recipient, to give consent to a direct payment on behalf of a person who lacks capacity under the Mental Capacity Act 2005.

There are two key conditions to be met. The first is that the requisite consent be given; the second, is that the recipient be suitable.

As to consent, the recipient must in any event give consent. If there is a surrogate for the person lacking capacity, then that surrogate has to consent as well. Draft regulations state that a surrogate must be a donee of a lasting power of attorney or a Court of Protection appointed deputy – either of whose powers, under the Mental Capacity Act 2005, must have been set up so as to include the power to secure a community care service. The recipient and the surrogate may, but not necessarily, end up being one and the same person (i.e. the surrogate may act as representative and so receive the direct payment). As to suitability, the other person (the recipient) giving consent is suitable as follows (Health and Social Care Act 2008, s.57 as amended):

•if the recipient is a representative of the person, then he or she is by definition suitable

•a representative is defined in draft regulations as a being either a donee of a lasting power of attorney or a deputy appointed by the Court of Protection (but not necessarily having welfare powers relating to community care services: DH 2008e)

•if the proposed recipient is not a representative of the person, he or she might still be suitable, but only if both the local authority and any surrogate consider the representative to be so

•if the recipient is not a representative of the person, and there is no surrogate, then the local authority alone has to consider whether the proposed recipient is suitable

In establishing whether a person, who is not a representative, is nonetheless suitable, draft regulations prescribe a number of conditions, which involve the local authority (DH 2008e):

•as far as is reasonably practicable, consulting with family members and friends involved in the provision of care for the person lacking capacity – as to whether they believe direct payments are the best option

•obtaining a criminal record certificate, if the proposed suitable person is not a family member or friend involved in providing care, from the Criminal Records Bureau (in future, this will be a check from the Independent Safeguarding Authority)

•being satisfied that the suitable person will act in the best interests of the person lacking capacity

•being satisfied that that suitable person has the ability to manage the direct payment

•being satisfied that the needs of the person lacking capacity can be met by a direct payment.

•being satisfied that in all the circumstances it is appropriate to make the direct payment to the suitable person.

The Act also provides for regulations to be made specifying the steps – such as consulting family members – to be taken by a local authority in deciding about who is suitable to receive a direct payment on behalf of a person lacking capacity. It also provides for regulations covering the case of a person’s fluctuating capacity (e.g. in the early stages of dementia), such that if a suitable recipient were receiving the direct payment, he or she could continue to do so even if the person regained capacity. However, the person would decide how the payment was used while he or she enjoyed the capacity to do so.

Regulations may also provide for repayment of the money if, for example, the recipient were to misuse it.

13.1.2.3 Willingness to receive a direct payment

The condition of consent implies not only capacity to decide to receive direct payments, but also willingness: people should not be ‘forced’ into them, as the local ombudsman noted:

Only offering direct payments for domiciliary care. The local ombudsman criticised a local authority, when it would only offer assistance for an elderly woman in her own home by way of direct payments; otherwise only permanent residential care or temporary (institutional) respite care was offered. The woman rejected both these options; she was on file as having threatened suicide rather than enter a care home and had previously had a bad experience in respite care. She reluctantly accepted the direct payments option in order to be able to stay at home; but, as the local ombudsman pointed out, direct payments ‘are not something that everyone can reasonably be expected to take on’ (Cambridgeshire CC 2002).

Nonetheless, a not uncommon question is whether a local authority can, having run down certain of its own directly provided services, effectively force a person to accept a direct payment by claiming that there is no practical alternative. This has not been answered head on, but the following case went some way to dealing with it. It concerned a direct payment to a parent for the welfare of a 12-year-old child. The court considered further the issue of consent and its implications. In summary, consent is required. In its absence, the local authority must make a reasonable response, but the speed with which the local authority must provide an alternative may depend on the reasonableness of the person’s refusal:

Refusal of a direct payment. First, it was clear that the use of direct payments was dependent on the consent of the person concerned. Second, the consent condition did not apply to the offer of a direct payment, but only to the obligation of having to make a direct payment. Third, the court considered but did not decide ‘whether the person concerned has an unqualified right to refuse to consent to direct payments’. It stated that ‘if the prospective recipient does have a reason to believe that the needs cannot be met in this way or (in the case of a child) that his or her needs will not be safeguarded or promoted by the use of direct payments or that the proposed amount is an unreasonable estimate of the cost of providing the services, the expectation of the statute and regulations is no doubt that these concerns will be articulated and a dialogue take place between the authority and the carer.’

Where a direct payment is refused, a local authority may claim that it will take longer to arrange the required services because appropriate carers may be hard to find. In deciding whether in such circumstances the local authority exceeds a reasonable time in arranging services, the court ‘may have to take into account whether the objections which [the recipient] raises to the direct payment alternative have been reasonable or arbitrary and, if reasonable, whether they have met a reasonable response’ (R(P) v Hackney LBC).

13.1.2.4 Direct payments and tax

One hurdle sometimes to be overcome, if direct payments are to be made more attractive, is the question of tax. Issues identified by the Low Incomes Tax Reform Group include direct payments users being categorised as ‘non-business micro employers’, but support services and information are not tailored to direct payment circumstances. Complex technical questions may arise over national minimum wage payments and sleep-in carers, as well as the tax position where living accommodation is provided for the sleep-in carer. A ‘simplified’ deduction offered to non-business domestic employers is not designed specifically for direct payments and is viewed as far from simple.

Status issues, such as whether a personal assistant is an employee or self-employed, are far from straightforward. Her Majesty’s Revenue and Customs (HMRC) have on occasion conducted a status enquiry in the context of direct payments, with ‘harrowing’ results for the older person concerned and her daughters. HMRC advice on this issue is far from clear or easy to apply. Questions may also arise about the proper tax analysis for user-controlled or independent living trusts used to administer direct payments; and whether the money- laundering regulations apply to payroll agencies in the voluntary sector in the context of direct payments (LITRG 2008, p.2).

13.1.3 RELEVANT SERVICES FOR DIRECT PAYMENTS

Direct payments are available for non-residential services including community equipment. They may also be used for residential accommodation but only on a limited basis. This is that the accommodation be provided for no more than four continuous weeks in any period of 12 months. Stays of shorter duration are to be added together, unless they are separated by a period of four weeks or more. However, they must anyway not exceed 120 days a year (SI 2003/762). Thus substantial, regular respite care throughout the year is possible under these rules, so long as there are four-week gaps and the 120-day limit is not exceeded.

However, in a case involving a child, the court accepted that the placement of a child in a residential educational placement involved the provision of a significant amount of social care and practical assistance, which did not amount to residential accommodation. Therefore, direct payments could be available for this element of the child’s needs, even to a child in residential accommodation (R(M) v Suffolk CC). In the case of adults, this case would appear to open the door to direct payments being made to a person in residential accommodation, for needs and services unconnected to the provision of the accommodation but nonetheless provided in the context of that accommodation.

13.1.3.1 Direct payments and health care

The direct payments legislation covers social services, but not NHS or housing services (Health and Social Care Act 2001, s.57; Children Act 1989, s.17A). This means that under the direct payments legislation at least, the NHS cannot make direct payments in respect of health care services.

Nevertheless, the NHS could, under s.256 of the NHS Act 2006, make money available to social services to bolster a direct payment. Section 256 allows the NHS to make payments to local authorities to help the latter carry out their social services functions. However, any such money made available by the NHS could not be for health care services.

Even given such apparent restrictions, there remains a significant grey area of uncertainty as to what constitutes health or social care. Clearly to the extent that a service (e.g. bathing) could be regarded as either, then for the purpose of direct payments it could be labelled as social care (i.e. a social services function) and be eligible. For recipients of direct payments, it may seem advantageous to have all, or at least the greater part of, their needs met through the flexibility of direct payments. However, two further issues arise.

First, the more services are categorised as coming within social services functions, the more they are subject to charging (the NHS is not empowered to charge for most services). Second, the extent to which local authorities have a legal power to provide ‘health care’ type services is governed in part by a prohibition in s.29 of the National Assistance Act 1948 (see 11.1.4 above). One study considered the very question of the dividing line between social care and health care in the context of direct payments. It found that in practice:

•Health professionals considered that tasks such as simple surgical dressings, giving suppositories and regular physiotherapy exercises could be performed by non-professionals; they lay in the grey area between health and social care (and so could arguably be included in direct payments).

•Health professionals considered the following type of task as not suitable for non-professionals (and so, arguably, should not be included within direct payments): care of leg ulcers or deep tissue wounds, assessing effectiveness of treatment, giving bladder washouts, tube feeding, enemas, manual bowel evacuation, colostomy care, tracheal suction, other aspects of tracheostomy care, changing urinary catheters (Glendinning et al. 2000).

In addition, local authorities are prohibited, under s.49 of the Health and Social Care Act 2001, from providing registered nursing care.

13.1.3.2 NHS ability to make direct payments under the NHS Act 2006

The courts have held that an NHS primary care trust (PCT) can pay money into a user independent trust, a voluntary organisation or private care agency. This would be under the wide powers a PCT has under s.12 (and schedule 3, para 15) of the NHS Act 2006:

Legality of NHS payments to user independent trust to allow disabled woman to live in the community. A woman who was blind, suffered from diabetes and had suffered several strokes. She required 24-hour nursing care, which had been provided by her parents in a home setting with private 24-hour nursing support. The parents now wished to withdraw hands-on care.

The PCT decided on a residential package, the main factor involved being cost and specialist attention being to hand in case of a crisis. A case was brought on the woman’s behalf, arguing that the PCT should provide support in her own home. This would be a cost-effective solution, it was argued. There was doubt as to whether it was lawful to make such a payment. The court held that it was lawful under the wide NHS powers. Furthermore, a reconsideration of the case was required, with a view to utilising and IUT.

However, the court would not order the PCT to enter into such an agreement, and there were various problems that had to be overcome. For instance, the IUT would need to be registered, some past track record would be needed, financial accountability would be required and the PCT would have to remain ultimate decision-makers. Nonetheless, the reconsideration was required because the interference with family life under article 8 of the Convention was clear. Whilst cost was relevant under article 8, so too was the evidence of the improvement in the woman’s condition at home, the quality of life in the family environment and the her expressed views that she wished to remain at home (R(Gunter) v South Western Staffordshire PCT).

Section 12 of the Act states that the Secretary of State ‘may arrange with any person or body to provide, or assist in providing, any service under this Act’. In addition this power may be exercised on ‘such terms as may be agreed, including terms as to the making of payments by or to the Secretary of State’. Under schedule 3, a primary care trust ‘may do anything which appears to it to be necessary or expedient for the purposes of or in connection with its functions’ (NHS Act 2006). Nonetheless, it is also clear that whilst such a power exists to make payments to a user independent trust, it is just that; it is a discretion not a duty (R(Whapples) v Birmingham East PCT).

It is arguable that these powers are so wide that they go beyond the ambit considered in the Gunter case and enable PCTs to make payments direct to patients. Thus, in 2008, a PCT settled an imminent judicial review case by agreeing to make a direct payment to the parents of a severely disabled girl of more than £35,000 per annum – and to meet their legal costs. The parents claimed that this would save the NHS money because she could be treated at home instead of in a high dependency unit. They argued that their daughter, with learning disabilities and severe heart problems, would accept care only from her parents. The PCT had argued at the preliminary legal hearing, that it would be unlawful to make such a payment, that to do so would be contrary to policy and that if such payments had been intended, then Parliament would have said so explicitly (R(Patnaik) v Sunderland Teaching PCT; also Booler 2008).

13.1.4 USING DIRECT PAYMENTS TO PURCHASE SERVICES FROM CLOSE RELATIVES OR LOCAL AUTHORITIES

A direct payment recipient may not use the money to pay close relatives living in the same household, unless this is necessary in order for the recipient’s needs to be met satisfactorily- or, in respect of a child-related direct payment, it is necessary for promoting the welfare of the child. The list of relatives comprises parent or parent-in-law, son or daughter, son-in-law or daughter-in-law, stepson or stepdaughter, brother or sister, aunt or uncle, grandparent, spouse, or any person living as spouse with anybody on this list (SI 2003/762).

The local authority may also make a direct payment subject to whatever other conditions it thinks fit, including that the payment should not be used to purchase services from a particular person (SI 2003/762). Such conditions might also relate to financial procedures , including methods of payment, monitoring procedures and accounting procedures; guidance on such matters is published by the Chartered Institute of Public Finance and Accountancy on such matters (CIPFA 2007).

The Social Security Commissioners have held that, where a husband was paid by his wife to provide care for her, using her direct payment, that money counted as income for the purpose of his claiming income support (thus reducing his entitlement (CIS/1068/2006). This decision was upheld by the Court of Appeal (Casewell v Secretary of State for Work and Pensions).

13.1.5 AMOUNT OF DIRECT PAYMENT

The local authority must make the payment at a rate that it estimates ‘to be equivalent to the reasonable cost of securing the provision of the service concerned’ (Health and Social Care Act 2001, s.57).

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