‘Why pooling our children’s personal budgets was worth the effort’

Pooling personal budgets refers to people deciding to bring together their resources, including money from their personal budgets, but also skills, passions and other assets, in order to achieve outcomes that were previously inaccessible to them. User-led organisation RUILS has illustrated a number of pooling projects in a dedicated guide that shows how people have used pooling to socialise together or set up businesses.

There are of course a number of practical considerations to be had as would apply to any other community project. There can be extremely positive benefits; however, even strong financial arguments may not be sufficient to overcome barriers within the social care procurement process to setting up a pooling arrangement.

Serious failings

I speak as one of the parents of four disabled children with complex needs who set up a pooling arrangement in 2010. This was in response to what we saw as serious failings in the home care being delivered to our children. With the support of commissioners, we set up Trust 23, an independent living trust (ILT), to organise their care. We pooled their direct payments and took over responsibility for overseeing the shared tenancy of their bungalow. As trustees of a not-for-profit organisation, this meant we knew every penny received was invested into providing independent living through opportunities to enjoy social and leisure activities which were previously denied such as taking an annual holiday.

Whilst not regulated by the Care Quality Commission, the ILT is bound by the same standards that are required of a domiciliary care provider. We have recruited a team of personal assistants (PAs) to provide 24/7 support, led by a senior PA with whom we work very closely to ensure compliance and the safeguarding of our children’s health, safety and welfare.

Demands on time

While it demands a lot of our time, it means we can be involved in helping our children face the challenges and opportunities of growing up, while allowing a controlled and safe degree of independence, just like other parents.

On a like-for-like basis, we believe we receive almost 30% less funding than an ordinary domiciliary care provider. And the council is not promoting or even mentioning Trust 23 as a model for other service users and families to follow should they wish in their literature around personal budgets.

Unsurprisingly, there is only one other such ILT in the UK. However, I would say that nothing comes without effort, and the rewards far outweigh the frustrations. I am happy to respond to any related queries, which can be sent to bernd.sass@disabilityrightsuk.org

• For more information on pooling personal budgets see Disability Rights UK’s report on its national programme on user-driven commissioning – improving the influence of the lived experience of service users on commissioning.

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