Working together to support disabled parents

Case 1: Single father with progressive condition

Without an inter-agency protocol in place

A single-parent father with progressive multiple sclerosis is being assisted to wash, dress and use the toilet by his 15-year-old son. The boy's school has noticed that he is arriving late in the mornings and is struggling to keep up with his studies. His form teacher visits his home as the difficulties become evident. Father and son are very wary of contacting social services and insist that they do not want to end up being separated, nor do they like the idea of complete strangers coming into the home to provide assistance. Wanting to respect their wishes, the school contacts a local young carers’ project which the boy attends once a week for peer support. The project advises him that after his 16th birthday he can apply for direct payments as a carer in his own right. The school also arranges for the boy to have extra time to complete homework assignments.

At one level this seems like an appropriate solution. An attempt has been made to respect the father and son's concerns and expressed wishes. However, the son is continuing to fulfil a demanding care role, which is having a detrimental effect on his education and his career prospects. The father does not have any assistance while the boy is in school and the risks inherent in the current care arrangements have not been assessed, either for the boy or for the father.

With an inter-agency protocol in place

When the nature of the boy's situation comes to light the school contacts a young carers’ project which is part of an inter-agency consortium working to an integrated protocol. The boy starts to attend the peer support group. A support worker from the project visits the father and son and explains to them how an assessment of the father's needs as a disabled adult with parenting responsibilities will result in an assessment by adults’ services.

While the assessment of the father's needs is being carried out an emergency package of assistance is put together using a local care agency with a good record for providing a consistent team of care workers and accommodating clients’ preferences. Short-term funding is provided jointly by adults’ and children’s social services on a 50/50 basis.

During the assessment the father decides to accept the option of using direct payments to employ his own care assistants, who he interviews jointly with his son. In this scenario the father and the son’s needs are appropriately assessed and met. They retain control over their situation and the boy's education is no longer adversely affected. The boy has access to useful peer support and additional recreational opportunities. Once the father's support package is in place the case is closed to children's social services.