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Designing services for people living with learning disabilities and behaviour that challenges

Posted by: , Posted on: - Categories: Information sharing, learning disabilities

We bring you another in the series of blogs from our friends at the National Institute for Health and Care Excellence. This time, Jonathan Senker, Chair of the Committee for the NICE guideline on learning disabilities and Chief Executive for VoiceAbility shares his thoughts on why a new guideline is so important to the social care sector.

Jonathan Senker: 'The new NICE guideline... focuses on the principle that children, young people and adults should have the support they need to live where and how they want.'

According to a study in 2007, there were an estimated 1.2 million children, young people and adults with learning disabilities in England, and of these there were around 10 - 17 percent who displayed challenging behaviour.

We also know that between 2014 and 2015, more than 160,000 adults with a learning disability received social care services ranging from a few hours of support a week to 24-hours-a-day support.

Variations in quality and availability of support persist across the country, with some services achieving a great deal in supporting people and major gaps observed in others. That is where the new NICE guideline on learning disabilities, which provides evidence based recommendations, can help.

These recommendations aim to help local commissioners and providers to focus on prevention and early intervention, enabling children, young people and adults to live in their communities, and increase support for families and carers.

This should reduce the need for people to move away from their homes and communities for care, education or treatment.

The guideline suggests ways to design and deliver services to help people have a good quality of life, support their physical, mental and emotional wellbeing, and maximise their choice and control over the support they receive and lives they lead.

NICE calls for effective co-ordination of services planning and delivery through a single lead commissioner and pooling of budgets.

It emphasises the importance of co-ordination of individual support for the person by named co-ordinators too.

The guideline calls for effective and timely access to expert support to prevent crisis. It emphasises that support and accommodation should be tailored to individual need, including offering people the option to live alone with support when appropriate.

As chair of the committee for developing the guideline, it was great to get a group of people together with a very diverse set of life experiences and expertise. The committee included people with learning disabilities and family members, as well as frontline and senior health and social care professionals and clinicians.

It was clear that all committee members had a strong, passionate desire to see people with learning disabilities and challenging behaviours lead better lives. Their knowledge gave us great insight into how providing well planned services and strengthening local support and expertise are essential.

Our recommendations were developed from the best available research and expert evidence. We were also able to draw upon committee members’ lived experience and professional experience to assess what was likely to make a real difference in practice.

As well as being aimed at commissioners and providers to help them plan and provide well designed services, this guideline provides an important resource to individuals and families to understand what support ought to be made available and to empower them to ask for what’s needed.

Designing the right support for people isn’t about imposing a one size fits all solution. On the contrary, it is about listening to what each individual needs to live their own life and building support based on those needs. This guideline provides a framework and approaches to help make this happen.

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