Quality statement 8: Services in the community

Quality statement

People with a learning disability and behaviour that challenges have access to specialist behavioural support in the community. [new 2019]

Rationale

A lack of specialist support in the community can affect quality of life for children, young people and adults with a learning disability and behaviour that challenges, and their families and carers. It can lead to problems after discharge from specialist inpatient care, such as assessment and treatment units or secure services. Insufficient community support can also delay or prevent discharges and transition from residential placements. Ensuring that specialist support is available locally for early intervention can help families and carers to look after the person at home, and reduce the incidence of crises and the need for intensive services and out-of-area and residential placements.

Quality measures

Structure

a) Evidence of local arrangements for specialist behavioural support to be available in the community for people with a learning disability and behaviour that challenges (including for people in contact with, or at risk of contact with, the criminal justice system).

Data source: Local data collection, for example from service specifications.

b) Evidence that local maximum waiting times for initial assessment, and for urgent and routine access to treatment and support for people with a learning disability and behaviour that challenges, have been set.

Data source: Local data collection, for example from service specifications.

c) Evidence that professionals working in specialist behavioural support are trained in helping people with a learning disability and their families and carers to understand and change behaviour that challenges.

Data source: Local data collection, for example, local service specifications.

Process

Proportion of people with a learning disability and behaviour that challenges accessing specialist behavioural support who receive support in the community.

Numerator – the number in the denominator who receive support in the community.

Denominator – the number of people with a learning disability and behaviour that challenges accessing specialist behavioural support.

Data source: Local data collection, for example from patient records and surveys on the experience of people with a learning disability and behaviour that challenges accessing specialist behavioural support, and their families and carers.

Outcomes

a) Proportion of adults with a learning disability who live in their own home or with their family.

Numerator – the number in the denominator who live in their own home or with their family.

Denominator – the number of adults with a learning disability.

Data source: NHS Digital's data set 1G - Proportion of adults with a learning disability who live in their own home or with their family. This data set is part of measures from the adult social care outcomes framework, England – 2017-18.

b) Proportion of children and young people with a learning disability who live with their family.

Numerator – the number in the denominator who live with their family.

Denominator – the number of children and young people with a learning disability.

Data source: Local data collection, for example, from children's social care services data sets.

c) Rates of inpatient admissions for people with a learning disability.

Data source: NHS Digital's learning disability services statistics includes inpatient data on learning disabilities and autism from the assuring transformation and the mental health service data set.

d) Rates of restrictive intervention use for people with a learning disability.

Data source: Local data collection, for example audit of records from schools and inpatient settings.

What the quality statement means for different audiences

Service providers (such as community learning disability teams, specialist intensive support teams, schools, short break services, social care providers and community support providers) ensure that practitioners working in the community are trained to help children, young people and adults with a learning disability and behaviour that challenges and their families and carers understand why the behaviour occurs and how to prevent or change the behaviour if it is causing problems for them, before it gets worse. They ensure that services are available in the community. If a child, young person or adult develops, or is at risk of developing, offending behaviour, they should refer them to appropriate specialists, such as community forensic or youth justice services, as soon as possible.

Health, social care and education practitioners (such as clinical psychologists, behaviour therapists, psychiatrists, learning disability nurses, community learning disability professionals, education staff, specialist intensive support workers and social workers) assess the needs and risk of children, young people and adults with a learning disability and behaviour that challenges in a community setting. They help the person and their family and carers, as well as other practitioners, to get support in line with this assessment. This support should help them to understand their behaviour, improve their quality of life, and reduce the behaviour that challenges before it gets worse, if it is causing problems for them. If a child, young person or adult develops, or is at risk of developing, offending behaviour, they refer them to appropriate specialists, such as community forensic or youth justice services, as soon as possible.

Commissioners (such as local authorities and clinical commissioning groups) have a lead commissioner to act on their behalf to commission specialist behavioural support in the community for children, young people and adults with a learning disability and behaviour that challenges (including for people in contact with, or at risk of contact with, the criminal justice system). The lead commissioner should ensure that specialist behavioural support in the community for children and young people includes support from education and child and adolescent mental health service (CAMHS) practitioners who have skills and experience in working with children and young people with a learning disability and behaviour that challenges.

People with a learning disability and behaviour that challenges can access specialist behavioural support in the community when they need it to help them understand their behaviour, if it is causing problems for them, and to stop it from getting worse. Families can have specialist learning disability support in the community instead of residential placements away from home, which will reduce the need for such placements.

Source guidance

Learning disabilities and behaviour that challenges: service design and delivery (2018) NICE guideline NG93, recommendations 1.3.1 and 1.4.7

Definitions of terms used in this quality statement

Specialist behavioural support

Support provided by practitioners who have training in helping children, young people and adults with a learning disability and their families and carers to understand and change their behaviour if it is causing problems for them or other people. This includes assessing behaviour that challenges to understand why the behaviour occurs and the function of the behaviour, and developing a behaviour support plan that identifies strategies to prevent or change the behaviour and improve quality of life.

[NICE's guideline on learning disabilities and behaviour that challenges: service design and delivery, terms used in this guideline and NICE's guideline on challenging behaviour and learning disabilities, recommendations 1.5.1, 1.5.6 and 1.6.1]

Carer

Someone who provides informal care and support to a child, young person or adult with a learning disability. It does not cover staff who are paid to provide care or support.

[NICE's guideline on learning disabilities and behaviour that challenges: service design and delivery, terms used in this guideline]

Behaviour that challenges

Behaviour of such an intensity, frequency or duration as to threaten the quality of life and/or physical safety of the person, or others around them. It also includes behaviour that is likely to severely limit, or result in the person being denied, access to and use of ordinary community facilities.

[Adapted from NICE's guideline on learning disabilities and behaviour that challenges: service design and delivery, terms used in this guideline]

Equality and diversity considerations

Children, young people and adults with a learning disability may have difficulties communicating because of disability or sensory impairment. Those with severe or profound learning disability may have particularly complex needs. Practitioners working with people with a learning disability may need to call on additional support to help them communicate with the person. This could include involving speech and language therapists or working with family members to find ways of improving communication. Practitioners may also use augmentative and alternative communication approaches such as manual signs, pictures, objects and communication aids to help people to communicate well.