Self-directed Support: Practitioners Guidance

Use of direct payment to employ family members

In the past, local authorities have had limited, discretionary powers to make direct payments to family members to undertake some caring duties that would otherwise have been purchased from a provider. It is not the intention of this approach to pay family members for undertaking family caring duties that are usually provided as part of the carer’s existing role. Typically this situation has arisen due to issues of rurality (e.g. where more formal support may be difficult to access because of geographical remoteness) and ethnicity (e.g. where a person’s specific cultural needs require to be met by someone with a comprehensive understanding of those needs, and that person may be a family member). These are not the only circumstances where family members have been paid by a local authority to care within their family but they are more common examples.

The statutory regulations that accompany the Act define the circumstances where a local authority may agree to a family member providing paid support where this is requested by the supported person.

A direct payment to a family member can be considered where:

• the family member and direct payment user and local authority agree to the family member providing the support.
• the family member is capable of meeting the direct payment user’s needs and
• any of the factors below apply.

The factors are:

• there is a limited choice of service providers who could meet the needs of the direct payment user.
• the direct payment user has specific communication needs which mean it will be difficult for another provider to meet the needs.
• the family member will be available to provide support which is required at times where other providers would not reasonably be available.
• the intimate nature of the support required by the direct payment user makes it preferable to the direct payment user that support is provided by a family member.
• the direct payment user has religious or cultural beliefs which make the provision of support by a family member preferable to the direct payment user.
• the direct payment user requires palliative care.
• the direct payment user has an emergency or short-term necessity for care.
• there are any other factors in place which make it appropriate, in the opinion of the local authority, for that family member to provide the support.

The regulations define an ‘exception to the family members rule” where local authorities may not agree to a family member being employed if:

• the local authority determines that either the family member or the direct payment user is under undue pressure to agree to the family member providing support; or
• the family member is a guardian, continuing attorney or welfare attorney with power to make decisions as regards the support to be provided through the direct payment.
• and includes a person, granted under a contract, grant or appointment governed by the law of any country, powers (however expressed) relating to the direct payment user’s personal welfare and having effect during the direct payment user’s incapacity.
• if the arrangements do not meet the person’s needs then the local authority does not have to agree (exemption already exists in existing legislation).
• if the arrangements place the person at an unacceptable risk then a duty of care takes precedence.

Paid support by family members: considerations for practitioners

• regulations have binding legal status so cannot be ignored.
• crucially the local authority, as well as the family member and direct payment user must agree to the family member providing the support. The ultimate decision lies with the local authority to retain the power to decline to fund this arrangement and must be made explicit to the person as to why this decision has been made. This means that the authority, as well as the supported person and prospective employee, must agree to the arrangement in order for it to be allowed under the Regulations. There are a number of reasons as to why an authority may disagree with the arrangement. For instance, the arrangement may not in fact meet the assessed needs of the supported person. Or the authority may be aware of other factors, for instance, the authority may be aware of potential exploitation issues.
• it is important to ensure that enough information is provided (that includes potential consequences) to enable informed choice.
• best practice indicates that this discussion is best located at the support planning stage of the self-directed support process when the ways of meeting a person’s needs and intended outcomes are being explored and described.
• there may be advantages and disadvantages to paying a family member. It may help to resolve a long-standing difficulty in relation to meeting the person’s support needs. On the other hand, families often have complex dynamics. Inevitably, paying for support changes the nature of the relationship between the person with support needs and the family member providing the support. This change in relationship may have an effect on the support needs of the individual. In all cases, the practitioner should weigh up the specific circumstances and they should do so alongside the individuals involved.
• it is important to explore the extent to which both parties are comfortable with the arrangement. Some considerations are likely to be around the nature of the arrangement, which often involves the person becoming the employer of their family member. In these circumstances it is important to assess how easy would it be for the supported person to raise concerns about the quality of the support provided? How easy would it be for the person to dismiss the family member if the need arose? Would employing a family member inhibit the choices and lifestyle of the person with support needs? How would you monitor the quality of support provided? What are the risks of such an arrangement and what steps can be taken to mitigate them?
• the above factors should be explored with the person and family member(s) to ensure the implications of such an arrangement are fully understood and the choice a well-informed one.
• an alternative that is sometimes deployed is for the person to use a direct payment to fund a provider organisation to employ their family member, which can help remove some of the challenges associated with the employer-employee relationship.
• a good support plan will address such issues (and some of those questions apply to a wider range of provision, e.g. employment of an unrelated Personal Assistant).
• ultimately the regulations state that a family member must be “capable of meeting (a person’s) needs” so practitioners must satisfy themselves that a person’s intended outcomes can be met in this way, as with every other option.
• if a worker believes such a payment is not appropriate in this context, it will be important to evidence the reasons why e.g. where a practitioner believes a person is under “undue pressure to agree” there would be a reasonable expectation from all parties that this is documented and explained.

Douglas’ story

Douglas is in his late 30s and has a long history of substance misuse. His wife is also a drug misuser and both lived very chaotic lifestyles. Douglas’s wife Anne is a particularly angry and verbally abusive individual though not physically abusive. The tenancy is vulnerable due to anti-social behaviour reports to the housing department.

Douglas was diagnosed with Motor Neurone Disease a few years ago and this is increasingly having an impact on the couple. Their lifestyle had already compromised and damaged their relationship with family and neighbours and as Douglas’ condition worsened, they became more isolated.

A direct payment was put in place to enable flexible support in an isolated area where options were limited and community networks not an option.

The circumstances were described to a support agency, and they started to provide personal and other key support to Douglas, though Douglas’ ambivalence was at times challenging for carers and arrangements were monitored. This was monitored very closely and Adult Support and Protection featured frequently. The couple have strong antipathy toward authority in general and social work services and resent the increasing need for support. However they do trust their GP.

Regular multi-agency meetings are held including representatives from police, housing, GP and an Adult Support and Protection Plan is in place.

The agency lost some staff to a rival agency, which meant a change to regular support arrangements. The couple struggled with this, and new carers found the attitude of the couple difficult, so they have given notice to withdraw.

Douglas at times expressed to his sister that he did not trust the care provided by Anne who was by now main carer. Anne frequently put her own needs above her husband’s wellbeing, and carers increasingly had no money to buy food for Douglas nor the means to provide personal care with dignity or safely.

Anne left, and the situation settled but a mutual dependency brought the couple together again. Douglas has the capacity to make decisions and clearly wished his wife to remain in his life and in their home.

In light of providers’ withdrawal, a plan was developed whereby Douglas’ sister would take on the role of Personal Assistant and would with her brother’s permission, provide some aspects of the support, while Anne took on the more personal aspects.

This was considered appropriate because Douglas’ sister provided a protective factor, she was the last relative willing to engage with the couple, She also recognised her brother’s choices were becoming restricted as his condition worsened and felt to provide support would help the couple stay together which in turn helped her brother stay out of institutional care, the last thing he or she wanted.

An outcome of this arrangement is that Anne has experienced a productive teamwork approach that does not judge her, and as a result she is more trusting and more able to compromise and is certainly less confrontational. Douglas is confident and reassured that his personal choices are respected. Prognosis is poor but this arrangement has enabled Douglas to remain in his own home which was his goal, for as long as is possible.