SECTION 3: ADDITIONAL SUPPORT: GIVING CONSENT, SUPPORTING DECISION MAKING AND ADVOCACY
Consent by the service user
45. 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. Local authorities must not exclude whole client groups of people from being deemed competent to consent to self-directed support. This means that local authorities should start from the premise that each person, aged 16 and over, has the capacity to consent to self-directed support, even if they require help to enable them to do this.
46. The local authority needs to be satisfied that the individual service user or representative has the help and support to enable them to do this, for example, advocacy may be needed. Those with parental responsibility can consent to self-directed support for children under 16 or persons under the age of 18 where that person is incapable of giving consent 23.
47. Local authorities need to be clear about what choices and decisions are involved in consenting to self-directed support for that individual. For example, is the individual consenting to stay in their 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?
48. Local authorities and support services (for example, Centres for Independent Living, local support organisations, local authority support services) should make clear that when people consent to self-directed support, 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 also take on additional legal responsibilities, either by contracting with an agency, or as an employer. Where a person purchases support for children, that person has a responsibility to ensure that the child is safe and that their welfare is promoted.
49. Local authorities should only make payments to a person whom they are satisfied accepts the responsibilities involved. Self-directed support may involve a substantial commitment in terms of time and energy, especially in the set-up phase. 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 self-directed support. Sometimes users find that such interim arranged services suit them and they should not be obliged to take up self-directed support instead of the service they have become accustomed to using.
50. 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 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.
Ross is 42, has extra support needs, and lives in a housing association flat. His previous support from the housing association 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 self-directed support to employ a personal assistant. He is a lot happier with his support now that he is more in control of who helps him and when they help him, and is confident in his new role of employer.
He says: '…The council's doing a good job, and my local support organisation really helped me to get this sorted...'
Supporting decision making and advocacy
51. Besides the support principles enshrined within the 2000 Act, there are other means of supporting decision making across all client groups, for example, user controlled trusts, circles of support, and advocacy. This approach emphasises the right of people to whatever assistance they need in order to be confident about making decisions. For example, research has shown that when given appropriate support people with learning disabilities can achieve a better quality of life 24. This is equally true for older people, those with autism or those with sensory impairments. 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.
52. People using self-directed support may also find it helpful to have access to advocacy support 25. Independent advocacy and self-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
- protect people from harm and exploitation.
'Having just completed our first year on self-directed support 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 support 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 support 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. Lately, 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).
Consent by attorneys and guardians
53. Where a local authority is satisfied that the person who requires the services cannot give consent, even with support to do so, the person's attorney or guardian may consent to receive them on their behalf if they have been granted the relevant powers under the 2000 Act. This should be seen as a last resort. As well as consenting on the adult's behalf, the attorney or guardian with the necessary powers will manage the package directly or indirectly.
54. Under the 2003 regulations, parents caring for a young person aged over 18 26 who is unable to give consent (for example, due to severe learning disabilities) will need to apply for guardianship. Attorneys and guardians must act within the general principles of the 2000 Act. The powers for attorneys and guardians to consent to self-directed support will also be of help where an individual's assessed needs change and they are no longer able to give consent to self-directed support in lieu of the new services. Rather than cease the package, the attorney or guardian may give the consent needed for the arrangements to continue. This means that self-directed support can continue when a person's condition fluctuates or deteriorates to the point that they are no longer in control day to day.
55. Self-directed support requires consent in relation to both financial and welfare matters. These powers are strictly interpreted according to what is stated in the court order. Local authorities should request documentary evidence to confirm attorney or guardian status and details of the powers granted. It is possible for one guardian to be given powers over both financial and welfare matters or for there to be a separate welfare guardian and financial guardian. In addition, there may be joint guardians where more than one person applies to hold the same powers jointly.
56. For attorneys, this means that the individual, while capable, usually has to give the attorney financial powers to claim and receive on their behalf all pensions, benefits, allowances, financial contributions, repayments, rebates and the likes to which the person 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.'
57. The Public Guardian 27 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.
58. Under the 2003 regulations, a parent or person who has parental responsibility for a child or a young adult (aged under 18) may give consent to receiving direct payments to purchase the support to meet the child or young person's assessed needs. Social workers also have a duty under the Children (Scotland) Act 1995 28 to elicit, listen to and take into account the views of the children concerned in decisions which affect them; increased weight is given to these views from the age of 12.
59. Where a young adult aged 18 or over lacks capacity to give consent to self-directed support, no-one else can consent on his or her behalf without use of the 2000 Act. A parent, for example, is able to act on behalf of his or her child aged 18 and over only if he or she has guardianship.
Jenny is 18 years old and lives with her mum who is also her legal guardian. She has just left school and started college. Her mum was her full-time carer and the only time she received respite was when Jenny's school was running summer camps which were not always suitable for Jenny's needs. Jenny's mum also felt that her daughter was missing out on taking part in activities that other young people were doing as she depended on her mum to support her.
Jenny has now been using self-directed support for a year. She was awarded 11 hours a week with which she employs a personal assistant for some of the time and contracts an agency for the rest of the time. Her workers assist her with bowling and swimming. This means that Jenny is independent and can mix with people her own age.
Jenny's mum is less worried about her daughter's future and believes that self-directed support has made her re-think what support Jenny has a right to.