Paul Streets: the Challenging Behaviour Foundation, an overlooked gem

Chatham is known for being the birthplace of HMS Victory, Nelson’s flagship: but it’s also the birthplace of the Challenging Behaviour Foundation, one of the most overlooked and impressive small national charities in Britain.

The foundation occupies what was once the courthouse. Like most premises occupied by small charities, it has seen better days: above the buzzy purposeful atmosphere, a line of damp runs along the edge of the ceilings from where the lead disappeared recently. Chatham is the most deprived town in Kent and petty crime is common.

The charity was established in 1997 by Vivien Cooper, a mother who was horrified that the only thing on offer locally for her son, who has severe learning disabilities, was containment until everyone got to crisis, and then a specialist residential placement in Preston, 275 miles away, at a cost of about £150,000 a year.

“Challenging behaviour” has a formal definition: it puts the safety of the person or others at serious risk. And it happens for a reason: an unmet need. The challenge is to find what that need is, and to meet it.

Cooper vividly describes having to cope with a son who, as a young child, would continually bang his head against the wall. She found the established national learning disability charities had little to offer and limited experience with severe learning disabilities because the numbers affected were so small. So she established the foundation.

Since then she has been fighting tooth and nail for a better offer for people like her son, often with local authorities and the NHS, who wish to do more but don’t know how to manage needs that are so complex.

She describes the breakthrough when she found someone who could teach her son signs for “yes”, “no” and “finished”, so that he could stop an activity or eating rather than just “swipe everything off the table”. Through her efforts and tenacity, her son now lives close by in his own home with two full-time carers funded by the council.

His challenging behaviour continues. She describes how he had three kilograms of inappropriate material surgically removed because he is compelled to eat inedible objects. But now he lives in the community near to his family, supported by people who understand and meet his needs.

The map in the office has pictures of a network of volunteers around the country, most with children who have similar needs, who share information and resources with others like them and signpost families to the helpline. This also provides emotional, technical and practical advice on how to cope, how to navigate the system and how to educate statutory authorities on what they can and should do.

Gemma, who runs the network, describes recent calls from a parent of a 16-year-old whose school placement had broken down. The local authority response was to put him into a secure mental health unit. She says this is common because people with severe learning disabilities who display challenging behaviour often meet the threshold for being sectioned.

Another call was with a senior NHS official to unlock additional rent for an older person with a severe learning disability. Gemma secured the additional rent by explaining it was necessary so that the older person could access appropriate housing.

This advocacy and support work targeted at individuals is combined with very effective national advocacy. The foundation is widely consulted by government on how to support people with severe learning disabilities, but also by the large mainstream learning disability charities. This is reflected in an impressive “strategic influence strategy” drawing from its casework.

No one really knows how many people are affected, but the foundation estimates that between 30,000 and 50,000 families in the UK have children with severe learning disabilities who display challenging behaviour. NHS support can cost up to £12,000 a week.

The purpose of the foundation is to make sure money is spent in a way that focuses on maximising quality of life, rather than solely minimising harm, or indeed causing it by inadequate or inappropriate support.

Truly humbling. #SmallButVital at their best.