NICE is urging councils and health bodies to make sure that people with learning disabilities can access well-designed services and staff with the right skills so they do not need to move away for care or treatment.
In a new guideline, NICE says children, young people and adults with learning disabilities, who have behaviour that challenges, should have the right support to live their lives in the community like everyone else.
Jonathan Senker, chief executive of VoiceAbility and chair of the NICE guideline committee, said: “We want people with learning disabilities and behaviour that challenges to get support to live their own life, not just to get a service. This new guideline is designed to help local authorities, the NHS and service providers work alongside people and their families to deliver well-designed support that meets their needs. It aims to improve community support for people with learning disabilities and behaviour that challenges so that people don’t need to move unnecessarily or live in institutional services.”
The guideline says local authorities and clinical commissioning groups (CCGs) should take joint responsibility and put one person, who has experience of working with people with learning disabilities and behaviour that challenges, in charge of designing services
This lead commissioner should work together with people using services and their families to develop a clear plan to support people with learning disabilities and challenging behaviour. They should base the plan on good local evidence such as local registers. Budgets and resources should be pooled across health, social care and education. This could be done across neighbouring authorities for the most specialist support services.
The guideline also emphasises the need to plan ahead to reduce the chances of a crisis arising and calls for resources to be in place to respond quickly, for example by providing an out-of-hours helpline.
NICE says adults with learning disabilities who have behaviour that challenges should be offered the option of living on their own if they prefer this and can get appropriate support to do so. As an alternative they can be offered shared housing with a small number of people.
The guideline says each person should have a singled named worker, like a social worker or community nurse, who can have regular meetings with them to discuss their needs.
The guideline emphasises the need to provide families with support as early as possible. This includes providing practical advice on how to care for their loved one, access to short breaks away from their caring duties and details of available local services.
NICE says people with a learning disability and behaviour that challenges should not be admitted to inpatient units unless all other possible options have been considered and exhausted.