08 November 2017

Challenging services to change Jonathan Senker, chief executive of VoiceAbility

Jonathan talks about how local, specialist support can improve the lives of people with learning disabilities and behaviour that challenges.

The crimes and abuse committed against people at Winterbourne View rightly brought the lives of people with learning disabilities and behaviour that challenges to public and political attention. 

However, the issues go far wider and deeper than any one particular service. 

Estimates suggest that there are 1.2 million people with a learning disability in England, and between 10-17% in this population have behaviour that challenges. 

Behaviour is challenging if it is harmful to the person or others around them or restricts the person’s life. 

Far too many people do not receive the individualised support that they need. I’ve seen first-hand the results of this, which can be devastating for the individual and their families. 

But, I am also inspired by the positive lives people lead when they are listened to and receive the right assistance. 

For these reasons, I was pleased to be appointed as chair of the NICE guideline committee on how services should be designed and delivered for people with learning disabilities and behaviour that challenges.

Improving leadership, planning and coordination together with a focus on local support lie at the heart of our draft recommendations. 

We advise that there should be a single lead commissioner responsible for health and social care services for people with learning disabilities. This person should have specific expertise about people whose behaviour is challenging. 

A named coordinator can help make sure that the person is at the centre of well-planned and delivered services, we also suggest. 

We want authorities and commissioners to provide practical and expert help to support families in the community. This includes planning ahead to anticipate and prevent a crisis as well as ensuring access to relevant information and to respite care. 

Good, specialist care, appropriate housing and support delivered on a local level can improve people’s quality of life. It can also avoid unnecessary admissions to psychiatric wards and prevent the need for people to move away from family and friends to get the help they need. 

Our draft guideline is not, however, a ‘colour by numbers’ set of instructions. Instead, they propose that support is built upon a set of values and principles which truly put people and their families at the heart of everything which is done. 

Consultation on the draft guidance closed on 20 November 2017. Final guidance is expected to publish in March 2018.


  • I am a newly appointed LAC in York and I can see how this powerful person centred approach can play a key part in improving the experience of people with learning disabilities and behaviour that challenges by promoting social inclusion for all and putting individuals and families in control of their own futures.

  • I am a mum to a teen with autism, a severe learning disability and now only very rarely challenging behaviour. The difference in his life has been due to professional ABA, so I am very glad to see it is recommended in this guidance. Without ABA, he would still be punching me and his own head when stressed, no doubt at all.

  • Best interest decisions need to be made more often when people are deemed to have capacity because that threshold is far too low. My son is verbal and refuses to comply with requests to eat regularly and healthily, shower, etc. He is diabetic and overweight. Because his behaviour is challenging, due to autism adhd learning disabilities ,most support staff just accept his refusal and say it’s his choice. His life is severely impacted by this. More training, guidelines and common sense are needed

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