Section 3: ADDITIONAL SUPPORT: CONSENT NEEDS, SUPPORTED DECISION MAKING AND ADVOCACY
66. Section 2 considered best practice for assessment, planning and costing a direct payments package. Section 3 gives guidance where additional support may be needed for informed consent, supported decision making and advocacy.
Consent by the service user
67. The 1968 Act requires that all eligible adult client groups give consent to receiving direct payments, or if they lack the capacity to do so, consent can be given by an attorney or guardian. The local authority needs to be satisfied that the individual service user or representative knows that the person has a choice and that they can receive help from others to make that choice. Those with parental responsibility can consent to children under 18 who are in need receiving direct payments for services.
68. Local authorities and direct payments support organisations should make clear that when people consent to direct payments, whether for themselves or the person they are representing, they take on the responsibility for arranging and purchasing the support to which the payments relate. They must ensure that the person who needs the care receives the appropriate support to an acceptable quality, and they take on legal responsibilities, either by contracting with an agency, or as an employer. Where a person purchases services for children in need with direct payments, that person has a responsibility to ensure that the services bought will ensure the safety of the child and promote their welfare.
69. Local authorities should only make direct payments to a person whom they are satisfied appreciates and accepts the responsibilities involved. However local authorities should note that an individual may receive as much assistance as they require to assist that person in understanding and being capable of giving consent to the use and management of direct payments.
70. Self-directed care may involve a substantial commitment in terms of time and energy, especially in the set-up phase, and these responsibilities should not be underestimated. Individuals should be given time to consider the implications of taking on direct payments and the responsibilities involved. During this period the local authority may need to arrange services for the individual rather than leave them without services or rush them into making a decision about direct payments. Sometimes users find that such interim local authority services suit them and they should not be obligated to accept direct payments instead of the service they have become accustomed to using.
71. The Adults with Incapacity (Scotland) Act 2000 ('the 2000 Act') sets out a framework for regulating the intervention in the affairs of an adult who has impaired capacity in a wide range of property, financial and welfare matters. Any intervention should be consistent with the principles of the 2000 Act.
72. This means that local authorities should start from the premise that each person, aged 16 and over, has the capacity to consent to direct payments, and that they may require suitable support. Local authorities must not exclude whole client groups of people from being deemed competent to consent to direct payments. In particular local authorities are reminded that, under the 2000 Act, they should not make decisions about an individual's capacity to consent to direct payments on the basis of the individual's capacity to give consent in other areas of his or her life. (See para 80 for more on the principles of the 2000 Act).
73. Local authorities need to be clear about what choices and decisions are involved in consenting to direct payments. For example, is the individual consenting to stay in his or her own home, or to be able to choose a support worker, or to go on a college course one day a week instead of to the day centre? An assessment about capacity to consent needs to be clear about an individual's ability to express preferences about all areas of their life in order for a judgement to be made about the choice and control an individual has over the decision to have direct payments, and what this will mean for them.
Supported decision making and advocacy
Example: Working together
'They're (the council's) doing a good job, and with my local support organisation and them, it really helped me to get my own support.'
Ross is 42, has extra support needs, and lives in a housing association flat. His previous support from the housing association, using Supporting People funding, meant contact with many different workers which did not suit him and they came to see him at times that were inconvenient for him.
With advice from his advocate and his social worker, Ross chose to use direct payments to employ a personal assistant who was better able to meet his needs. He was assisted through the process of getting a direct payment and recruiting his personal assistant, by his advocate attending meetings with him and the social work department or the local direct payment support organisation.
With the assistance of his advocate to help him cope, Ross is a lot happier with his support now that he is more in control of who helps him and when they help him. Working with his advocate and the local support organisation has assisted Ross in feeling supported in his new role of employer.
74. Beyond legal mechanisms there are other means of supporting decision making. This could take the form of a User Controlled Trust, 10 a 'Circle of Support,' 11 or advocacy. This approach emphasises the right of people to whatever assistance they need in order to be confidant about making decisions. For example, research has shown that when given appropriate support, people with learning disabilities exercise control over their support and so have a better quality of life. 12
75. Local authorities should satisfy themselves that the support structure is appropriate and that adequate time is allowed for relationships to develop between the individual and the people providing the support. Supported decision making is the best way to ensure an individual is able to consent to and exercise appropriate choice and control over direct payments.
76. People who receive direct payments may also find it helpful to have access to advocacy support. In general, independent advocacy can help to:
- promote respect for the rights, freedoms and dignity of people, both individually and collectively;
- ensure people receive the care or services to which they are entitled, and which they wish to receive;
- enhance people's autonomy;
- assist people to live as independently as possible and in the least restrictive environment; and
- help protect disadvantaged people from abuse and exploitation.
77. Groups of local users may also benefit from advocacy support as part of their contribution to local authority consultations, care planning steering groups and committees, particularly when the local authority is considering changes to the provision.
Consent by attorneys and guardians
'Having just completed our first year using the direct payment scheme to manage the care of my brother-in-law Craig, I would like to say what a positive experience it has been. The scheme has allowed us to tailor Craig's care to suit his needs which seem to change on a daily basis. This has led us to achieve a better quality of life for him. Although the scheme is managed by me, Craig is involved in all aspects and decisions of his care from staffing, to the choices of food he has in his cupboards. This was not always possible with past care providers who seemed to be unable to be as flexible as is required. Hopefully, we can continue learning and improving Craig's care, allowing him to live his life happily and as fulfilled as possible. Lastly, when I asked Craig how he felt things were going with him and me as "the boss", he replied "magic"'. (Brother in law of 47 year old man with learning disabilities).
78. Where a local authority is satisfied that the person who requires the services cannot give consent to receiving direct payments, the person's attorney or guardian may consent to receive them on their behalf. This should be seen as a last resort, after every attempt has been made to support the person to make the decision themselves.
79. It is envisaged that the new powers for attorneys and guardians to consent to direct payments will be of most help where an individual's assessed needs change and he or she is no longer able to give consent to receive direct payments in lieu of the new services. Rather than cease direct payments, the attorney or guardian may give the consent needed for the new payments arrangements to continue. This means that direct payments can continue when a person's condition fluctuates or deteriorates to the point that they are no longer in control of the direct payments.
80. Attorneys and guardians must act within the general principles of the 2000 Act which are that all decisions made on behalf of an adult with impaired capacity must:
- benefit the adult;
- take account of the adult's wishes, if these can be ascertained;
- take account of the views of relevant others, as far as it is reasonable and practical to do so;
- restrict the adult's freedom as little as possible while still achieving the desired benefit; and
- encourage the adult to use existing skills or develop new skills.
81. Local authorities should not make direct payments to an attorney or guardian unless they are satisfied that they appreciate and accept the responsibilities they have to the individual receiving the services and the local authority. Direct payments should only be made to attorneys and guardians who have been granted the relevant powers under the 2000 Act, to act on a client's behalf. These powers are strictly interpreted and mean that when it comes to legal interpretation of the powers, there is no possibility of deducing implied powers. Local authorities must ensure that guardians and attorneys have both powers relating to personal welfare and financial matters and therefore the necessary powers to act on a person's behalf in relation to receiving direct payments. Local authorities should request documentary evidence to confirm attorney or guardian status and details of the powers granted.
82. For attorneys, this means that the granter, while capable, usually has to give the attorney financial powers to claim and receive on behalf of the granter all pensions, benefits, allowances, financial contributions, repayments, rebates and the likes to which the granter may be entitled. In welfare powers, there is often a form of words indicating that the attorney 'may decide what care and accommodation may be appropriate for me.'
83. Most commonly guardianship orders specify a range of powers delegated to one or more guardians. However, it is possible for one guardian to be given powers over welfare and financial matters.
84. The Public Guardian has a duty to receive and investigate all complaints regarding the exercise of functions relating to the property or financial affairs of an adult made in relation to attorneys or guardians. Local authorities have a responsibility to investigate complaints in relation to welfare, and the Mental Welfare Commission Scotland has a role in protecting the interests of adults with incapacity where the incapacity is as a result of mental disorder.
85. A parent or person who has parental responsibility for a child (aged under 18) may give consent to receiving direct payments to purchase the support to meet the disabled child or young person's assessed needs. Local authorities must however satisfy themselves that the parent giving the consent will make arrangements that will ensure the safety of the child and promotion of their welfare. (Section 12 gives further details of direct payments for children's services.) In the case of a 16 or 17 year old who requires services, the local authority must first seek consent from the young person, ensuring that he or she has the support required to help him or her make that decision. Only where it is clear that the young person is unable to give consent should the local authority look to a parent for consent.