Direct payments: Answering frequently asked questions
Question 14. What about gaining consent?
One part of the assessment involves being clear that the service user is able to consent to a direct payment (DP). This needs to be approached creatively and with an open mind by the assessor to ensure they are able to communicate with people who may have a variety of impairments (see Question 13).
Under current legislation, as well as under the Mental Capacity Bill, each decision has to be assessed separately. It cannot be assumed that a person generally lacks capacity to make decisions; nor can it be assumed that a person will be unable to agree a direct payment simply because they may previously have been thought unable to make other decisions in their lives. (27) (33)
Gaining consent is a gradual process and should involve the individual direct payment user, social services, the family, advocates, friends and the direct payments support services (DPSS).
The process can also be supported through the use of other tools, such as videos and pictures.
The Department of Health (DH) has an easy-read guide to direct payments, which was developed by Swindon People First and can be downloaded from the DH website.
We took this step by step. I first sat down with Jack and his mother and talked about the possibility. I took literature - the DH have a leaflet and a tape (now CD) about direct payments (for people with learning difficulties. Later we watched the 'Values into Action' video together, it is really good, but most of the people in it have physical impairments, there are few with learning disabilities. All this gave him a flavour and made him aware of the possibilities, and gave him information to help him make his decisions... The thing people need to remember is that they have to do an assessment anyway, whatever services people are having. Yes it takes time. I reckon it took four or five visits to complete the form. I took one section at a time and made sure Jack understood it all, understood what I was writing down, read it out, made changes. Consent was as much a process as a moment, though obviously there was a point when both Jack and his parents said: 'Yes.' This happened at a meeting of Jack, his mother and Ranjit in the family home. Once Jack understood that DP would enable him to do a variety of things that he wanted to do - go to college, the horticultural work and leisure activities- he was excited about the possibility. However, while Jack's mother could see the potential DP had to increase Jack's independence, she also had a number of anxieties about the responsibilities involved with DPs. She was concerned about the tax, National Insurance, employing the PA [personal assistant], etc. The support of the Direct Payment Support Agency was crucial in allaying her fears.Nottinghamshire LA
We have money from the DP development fund to run a 'support network' project aimed at building on the circles of support model and applying it to DP users.Independent Living, Norfolk
Our advocacy service is involved on many occasions and we have a worker identified within the support service to provide the extra support that may be needed by people with learning difficulties. Referrals can be made to us, and some care managers involve us at an early stage for this group.Independent Choices, Northamptonshire
Assumptions about consent and ability to manage direct payments can block people with learning difficulties from accessing support. These assumptions can be held equally by independent support schemes as by statutory services. (44)
We are using DP development fund money to create a specialist post to work with people with learning disabilities to develop new ways of supporting people who need assistance to use and run their DP scheme.East Sussex LA
Assuming the assessment is user-centred, the service user can show consent retrospectively through satisfaction with the arrangements. (31)
Measures local authorities were taking to maximise the potential for people with learning disabilities to make an informed choice included: providing accessible information, giving people time, reducing the formalities, respecting the ways in which people communicate, lessening the pressures and enabling people to make decisions in their own familiar environment. (34)
The key message for staff is that consent does not need to mean that the person understands the intimate details of how direct payments work, but they understand the options and how direct payments might make a difference to their lives.
What is a trust?
A trust is a commitment made by one or more people to manage someone else's money and act on their behalf.
Generally family members or friends, trustees have a duty always to exercise their powers in the best interests of the person receiving the direct payment.
Trusts are legally binding and can be designed to facilitate supported decision-making, maximising the person's own control.
Susan, who is in her 20s is severely disabled. She makes her views known through her actions, verbal responses, facial expressions and moods. Susan's circle of support realised she was unhappy with existing services and put together a package to enable her to live independently. Direct payments was part of the package. The circle formed itself into a user-controlled trust fund, which manages the direct payment. Susan's expressions and views guide how the money is spent, so she is in control of the use of the money. Direct payments mean Susan can live in her own house, with her own rota of support workers. She is relaxed, confident and content with a full social life and is very much part of the community.Valuing People Department of Health, 2001
More information on trusts can be found by contacting the National Centre for Independent Living (NCIL).
Local authorities will need to consider how to treat someone with a fluctuating condition which affects his or her ability to manage direct payments. In many cases, people with such conditions may nevertheless be able to cope with direct payments if a friend, relative or some other third party is willing to provide greater assistance when their condition worsens. If the person's condition is likely to deteriorate to the point where he or she is unable to manage even with assistance, the local authority might consider ways of enabling him or her to receive direct payments to ensure that support continues to be delivered in the manner preferred by the user. (18)
Advance directives are an opportunity to discuss in advance what should happen if a crisis develops or health deteriorates. This can ensure the wishes of the service user are always represented. For an example, have a look at the booklet 'Direct payments for mental health users/survivors: A guide to some key issues',available from the National Centre for Independent Living (NCIL). (35)