Quality statement 5: Involving families and carers

Quality statement

Families and carers of people with a learning disability and behaviour that challenges are involved in developing the person's care and support plan, which includes how to prevent or respond to a crisis. [new 2019]

Rationale

Families and carers of children, young people and adults with a learning disability can find it hard to get information and support to help them understand behaviour that challenges, and to know the signs to look out for, what to do in a crisis and where to find services and support. Involving families in developing a care and support plan (if this is what the person wants), listening to their ideas, and providing information and support will increase their confidence and skills. This means that people with a learning disability are more likely to stay with their family, if they want to, and behaviour that challenges is less likely to occur or worsen.

Quality measures

Structure

Evidence of local arrangements to ensure that community learning disability teams or relevant children's services (for example, disabled children's teams) and service providers work in partnership with the families and carers of people with a learning disability and behaviour that challenges to develop a care and support plan that includes how to prevent or respond to a crisis.

Data source: Local data collection, for example, from service level agreements and policy documents.

Process

Proportion of care and support plans for people with a learning disability and behaviour that challenges where families and carers were involved in developing them.

Numerator – the number in the denominator where families and carers were involved in developing them.

Denominator – the number of care and support plans for people with a learning disability and behaviour that challenges.

Data source: Local data collection, for example, local audit of care and support plans or education, health and care plans.

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.

What the quality statement means for different audiences

Service providers (such as community learning disability teams or relevant children's services [for example, disabled children's teams or schools], community support providers, community mental health teams, social care providers, supported housing and residential care providers, and inpatient teams) ensure that staff have the time and resources to meet the families and carers of children, young people and adults with a learning disability and behaviour that challenges to discuss a care and support plan that sets out how to prevent or respond to a crisis.

Health, social care and education practitioners (such as social workers, care managers, advocates, community learning disability nurses, allied health professionals and education staff) meet the families and carers of children, young people and adults with a learning disability and behaviour that challenges, independent advocates and the named lead practitioner to discuss and develop a care and support plan together that sets out how to prevent or respond to a crisis.

Commissioners (such as NHS England, local authorities and lead commissioners) ensure that they monitor whether services meet and involve the families and carers of children, young people and adults with a learning disability and behaviour that challenges, independent advocates and the named lead practitioner in developing a care and support plan that sets out how to prevent or respond to a crisis.

Families and carers of people with a learning disability and behaviour that challenges are involved in developing a care and support plan. The plan includes tips on how to prevent a crisis and what families and carers should do if a crisis happens. The plan also includes practical information to help them in their role as carers.

Source guidance

Learning disabilities and behaviour that challenges: service design and delivery (2018) NICE guideline NG93, recommendation 1.2.14

Definitions of terms used in this quality statement

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]

Care and support plan

A person-centred plan that:

  • meets the person's needs and preferences

  • works to support and maximise the person's mental capacity

  • takes into account people's fluctuating mental capacity and needs

  • adopts a 'whole life' approach that covers what they want to achieve in both the short and long term, and supports smooth transitions

  • takes a positive approach to managing risk

  • sets out what to do to prevent or respond to a crisis, including early intervention and management of a crisis. The plan includes key local emergency contact numbers and simple, practical interventions. It might also cover rapid involvement of additional services and provision of extra resources, such as short break services.

[NICE's guideline on learning disabilities and behaviour that challenges: service design and delivery, recommendation 1.2.14 and expert opinion]

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]