NPC has long argued that charity governance, at its best, means including people affected by the cause in the running of the charity.

So here’s an awkward question. What if a charity involves beneficiaries in this way—and then doesn’t agree with what it hears from them?

The US-based autism charity Autism Speaks shows how quickly this can turn toxic. The dominant voice on autism in the USA, the charity has struggled to articulate how it can best serve its different beneficiaries, even when some beneficiaries sit in positions of power. Thus co-founder Susan Wright—at the time bringing up an autistic child—referred to the condition as a national emergency where ‘life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future’. John Elder Robison, one of few autistic people in a position of responsibility at the charity, and the only known senior member at that time, resigned in protest against the image of autism as such a terrible burden.

By contrast, Autistica, one of the UK’s premier autism charities, has found a way to engage proactively with the autistic community. When it consulted on the top 10 research priorities for autism this year, 23% of respondents were individuals on the autism spectrum.

So does this mean charities should hand over the keys entirely to the beneficiaries? In reality it is rarely that simple. One look at deafness charities shows the complexities involved.

The development of hearing technology, including cochlear implants, have dramatically enhanced the capacity of deaf people to hear. But this has caused conflicts. Some in the deaf community (including, but certainly not limited to, people who sign as their first language) worry that implants could damage deaf culture by discouraging the use of sign language. At its most extreme, the move towards implants has been compared to ethnocide, the destruction of a culture.

This cultural battleground becomes especially sensitive around children, and charities can end up in an uncomfortable position—effectively taking sides in this conflict between beneficiaries. For example, the Mary Hare charity, which operates schools for deaf children, doesn’t permit sign language in teaching and actively encourages the use of verbal communication between classes. Its position aligns it with some parts of the deaf community, but squarely against others.

So what is the solution? The best model is probably for a charity to integrate elements of joint decision-making between the people it supports and people with a background in charity governance (and, wherever possible, individuals who can combine the two).

One good example is the Thera Trust, a charity which provides support to adults with learning disabilities to help them find suitable housing, engage in employment, and live the lives they choose. The Trust is committed to promoting their beneficiaries as leaders in society, and to supporting those affected in managing the services they receive. This is entrenched across the organisation, including at the highest level—both Directors and non-executive Directors must include at least one person with a learning disability, and currently 40% of their directors have a learning disability.

Charities have also worked hard to break down some of the barriers between charity staff and the people they support. This is the approach embraced by Mosaic Clubhouse, which aims to maximise the involvement of their beneficiaries in the day-to-day operations of the charity (there are no ‘staff only’ areas in their buildings, for example). In charities like Parkinson’s UK, members—who may be directly affected by Parkinson’s Disease—hold voting powers to elect trustees and therefore have a potentially considerable sway over how the charity is run.

If this sort of good practice is possible for charities working with such tough beneficiary groups, it should be possible for most to give it a go. We know it isn’t always easy—which is why beneficiaries’ roles will be an essential part of the updates we’re making in the next few months to our little blue book guide to analysing charities. However, charities should be optimistic that they can engage with and learn from the people they support.