NICE quality standard (draft for consultation) Service model for people with learning disabilities and behaviour that challenges NICE quality standard (draft for consultation)

What is a learning disability? When you have difficulty understanding information. When you may need help and support with some everyday tasks. You have had these difficulties since before you were 18.

What is behaviour that challenges? Doing things that hurt yourself or others. Damaging things. Doing things that make life difficult for you or for other people.

What is this quality standard about? This quality standard is about how to make services work better for people with a learning disability and behaviour that challenges. It describes 5 actions that can make services work better together for people with a learning disability (these are called quality statements). It should be used by all services that give people care and support.

What is this quality standard for? To give people more choice and control in their life. To make it better and easier to use services. To make services work together better. To make people’s lives better, and make life better for families and carers.

We are asking for your views What do you think? We are asking for your views This quality standard is in consultation until 18 March 2019. This means NICE is asking for your views about this document. After hearing what you and other people think, NICE will make changes and publish the final quality standard in July 2019.

Questions for you Question 1 What do you think? Questions for you Question 1 Is there anything missing from this quality standard that you think we should say? Question 2 How easy do you think it would be to do these actions?

List of quality statements Statement 1 Local authorities and clinical commissioning groups jointly choose a lead person to oversee strategic commissioning of services for all people with a learning disability. Statement 2 People with a learning disability and behaviour that challenges have a named lead practitioner. Statement 3 Families and carers of people with a learning disability and behaviour that challenges are involved by services in developing the person’s care and support plan, which includes how to prevent or respond to a crisis. Statement 4 People with a learning disability and behaviour that challenges can have specialist behavioural support in the community. Statement 5 Adults with a learning disability and behaviour that challenges are supported to live where and how they want. .

Quality statement 1 Local authorities and clinical commissioning groups jointly choose a lead person to oversee strategic commissioning of services* for all people with a learning disability. * This means they choose 1 person who is in charge of services for all people with a learning disability

Why is quality statement 1 important? Having 1 person in charge of all services (a lead person) who has worked with people with a learning disability before will help to make sure that services can meet people’s needs. The lead person can bring together commissioning across health and social care to make it simpler and to share costs.

What does quality statement 1 mean for people with a learning disability? People with a learning disability use services that are organised by 1 person who is in charge and has worked with children, young people and adults with a learning disability and behaviour that challenges before.

Hi! My name is Sue Quality statement 2 People with a learning disability and behaviour that challenges have a named lead practitioner.

Why is quality statement 2 important? People with a learning disability are often supported by many different services. These services need to work together. A named lead practitioner can make sure that all the services have the information they need to support the person.

What does quality statement 2 mean for people with a learning disability and their families and carers? People with a learning disability know who they can talk to about their care and support. They know they can ask this person questions and get help when they need it. Families and carers (and anyone else who helps out) know who to talk to when they need advice or information.

Quality statement 3 Families and carers of people with a learning disability and behaviour that challenges are involved by services in developing the person’s care and support plan, which includes how to prevent or respond to a crisis*. * This means writing a plan to spot when you are having a bad time and your behaviour gets worse, or a plan to stop that from happening

Why is quality statement 3 important? Families and carers can find it hard to get information and support about behaviour that challenges and what to do in a crisis. Involving families and carers in care and support planning helps them to feel listened to and to know what to do. Having a plan can help to spot problems early and stop a crisis happening later.

What does quality statement 3 mean for families and carers? Families and carers (including friends, partners or colleagues and anyone else who helps out) are involved in making plans to help as soon as there are problems, and stop behaviour getting worse. They are given support that helps them to manage their role as carers.

Quality statement 4 People with a learning disability and behaviour that challenges can have specialist behavioural support in the community*. *This means getting help from specialist services close to home

Why is quality statement 4 important? Getting help from staff with specialist skills close to home means people with a learning disability do not have to move away or go to hospital to get the support they need. They may need support when they come home from hospital. Without it, they might have to stay in hospital longer. Support from staff with specialist skills helps families and carers to look after the person at home and stop them having a crisis.

What does quality statement 4 mean for people with a learning disability and their families and carers? People with a learning disability can get help from specialist support services close to home when they need it. Families and carers can get help from specialist support services close to home so that the person they care for can stay at home.

Quality statement 5 Adults with a learning disability and behaviour that challenges are supported to live where and how they want.

Why is quality statement 5 important? Adults with a learning disability want to choose where they live and who they live with. They might want to live alone with support or share a house with a small group of people. Helping people to choose means they have more control.

What does quality statement 5 mean for adults with a learning disability? Adults with a learning disability talk to staff about where they want to live and whether they need any support to live there. They are supported to choose where and how they want to live.

NICE has other quality standards that are important for people with a learning disability. You can see the full list at quality standards topic library. The most important ones for people with a learning disability and behaviour that challenges are: People’s experience of using adult social care services (QS183) Learning disabilities: identifying and managing mental health problems (QS142) Learning disabilities: challenging behaviour (QS101) Autism (QS51)

Artwork is from the Valuing People Clipart collection and cannot be used anywhere else without written permission from Inspired Services Publishing Ltd. www.inspiredservices.org.uk Recs 1.9.8 to 1.9.10