Adam is 47 years old and has a diagnosis of moderate/severe learning disability and has been using care services since he was a child. He attended a special needs school throughout his education and remained at school until he was 19 years old.
He lives in supported living accommodation, works at a community café, and attends the local college once a week. He is in regular contact with his sister who lives nearby.
When his eligibility was last considered (prior to the implementation of the Care Act) his needs were in the substantial band of the Fairer Access to Care Services (FACs) eligibility criteria.
Adam suffers with arthritis and often has pain in his joints and gets very tired easily. He needs support to make sure he remembers to take his medication regularly. He can often become upset and agitated over different things and will lose his temper and throw/break objects or become verbally aggressive. These incidents are increasing in their frequency and recently there have been occasions when he has become anxious and staff have had to leave him in his flat until he has calmed down to prevent themselves from getting hurt.
These incidents have focused on keeping his room clean. He hides away uneaten food and rubbish which sometimes remains undiscovered until it starts to smell. Adam doesn’t acknowledge this as a problem, and gets angry when the cleaners discover the food and also when his key worker tries to talk to him about it. It is a condition of his tenancy agreement that a reasonable standard of cleanliness is maintained.
His sister Alice thinks it is the cleaners that he has that are the problem, because they do not communicate with him sensitively. She wants Adam to have a direct payment so he can employ his own cleaner. The manager of the supported living accommodation believes that the problem needs further consideration before a way forward can be found.
Do you think that Adam has substantial difficulty in being involved?
What would you do about Alice’s request for a direct payment for a cleaner?
If it was decided that Adam did have substantial difficulty in being involved should he have an independent advocate?
Suggested answer There is evidence that Adam has substantial difficulty in communicating his views, wishes and feelings to the extent that they are inhibiting his involvement in decisions that need to be made about the management of his care and support. It is possible that he also has substantial difficulty in the other three areas set out in the guidance of understanding relevant information, retaining information and using or weighing the information as part of engaging, but further exploration would be needed to determine this. However, it is only necessary for one of the four areas to be demonstrated to conclude that there is substantial difficulty.
The response to Alice’s request for a direct payment must be considered and this would probably be best achieved through a review of his care and support plan. The local authority must make the judgement about whether Adam has substantial difficulty in being involved at this point. It may be the case that the local authority has outsourced reviews or commissioned the care provider to hold them. However, whatever the circumstances the local authority retains the overall responsibility for this judgement.
In general, an individual who has substantial difficulty in being involved will only qualify for an independent advocate where there is no one appropriate to support their involvement. Therefore, the local authority must decide whether Alice can act as an appropriate individual to facilitate Adam’s involvement. If she can take on this role then an independent advocate would not normally be appointed. The appropriate individual is expected to support and represent the person and to facilitate their involvement in the processes. So having established that Adam is happy for Alice to support him (assuming he has capacity and that he does), the local authority would have to be satisfied that she understands that it is her role to support his active involvement. In this case the local authority may decide that Alice cannot take on this role her opinion about the direct payment to employ a cleaner gets in the way of her supporting Adam to say what he wants and representing his views.