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Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges

This Guidelines for Nurses summary covers the key points for primary care. Please see the full guideline for complete recommendations, including other sections not mentioned in this summary:

  • Staff training, supervision and support
  • Organising effective care
  • Behaviour support plans
  • Interventions for sleep problems

Terms used in this guideline


Children, young people and adults

  • This guideline covers people of all ages with a learning disability and behaviour that challenges. All recommendations relate to children, young people and adults unless specified otherwise. These terms are defined as follows:
    • children: aged 12 years or younger
    • young people: aged 13 to 17 years
    • adults: aged 18 years or older

Carer

  • A person who provides unpaid support to a partner, family member, friend or neighbour who is ill, struggling or has a disability. This does not include paid carers (care workers), who are included in the definition of staff

Functional assessment

  • An assessment of the function of behaviour that challenges, including functional analyses and other methods of assessing behavioural functions

Reactive strategies

  • Any strategy used to make a situation or a person safe when they behave in a way that challenges. This includes procedures for increasing personal space, disengagement from grabs and holds, p.r.n. (as-needed) medication and more restrictive interventions

Reinforcer

  • An event or situation that is dependent on a behaviour and increases the likelihood of that behaviour happening again.

Self-harm

  • When a person intentionally harms themselves, which can include cutting and self-poisoning. It may be an attempt at suicide

Self-injury

  • Frequently repeated, self-inflicted behaviour, such as people hitting their head or biting themselves, which can lead to tissue damage. This behaviour is usually shown by people with a severe learning disability. It may indicate pain or distress, or it may have another purpose, such as the person using it to communicate

Staff

  • Healthcare professionals and social care practitioners, including those working in community teams for adults or children (such as psychologists, psychiatrists, social workers, speech and language therapists, nurses, behavioural analysts, occupational therapists, physiotherapists), paid carers (care workers) in a variety of settings (including residential homes, supported living settings and day services) and educational staff

 

General principles of care

Working with people with a learning disability and behaviour that challenges, and their families and carers

  • Work in partnership with children, young people and adults who have a learning disability and behaviour that challenges, and their family members or carers, and:
    • involve them in decisions about care
    • support self-management and encourage the person to be independent
    • build and maintain a continuing, trusting and non-judgemental relationship
    • provide information:
      • about the nature of the person’s needs, and the range of interventions (for example, environmental, psychological and pharmacological interventions) and services available to them
      • in a format and language appropriate to the person’s cognitive and developmental level (including spoken and picture formats, and written versions in Easy Read style and different colours and fonts)
    • develop a shared understanding about the function of the behaviour
    • help family members and carers to provide the level of support they feel able to
  • When providing support and interventions for people with a learning disability and behaviour that challenges, and their family members or carers:
    • take into account the severity of the person’s learning disability, their developmental stage, and any communication difficulties or physical or mental health problems
    • aim to provide support and interventions:
      • in the least restrictive setting, such as the person’s home, or as close to their home as possible, and
      • in other places where the person regularly spends time (for example, school or residential care)
    • aim to prevent, reduce or stop the development of future episodes of behaviour that challenges
    • aim to improve quality of life
    • offer support and interventions respectfully
    • ensure that the focus is on improving the person’s support and increasing their skills rather than changing the person
    • ensure that they know who to contact if they are concerned about care or interventions, including the right to a second opinion
    • offer independent advocacy to the person and to their family members or carers

Understanding learning disabilities and behaviour that challenges

  • Everyone involved in commissioning or delivering support and interventions for people with a learning disability and behaviour that challenges (including family members and carers) should understand:
    • the nature and development of learning disabilities
    • personal and environmental factors related to the development and maintenance of behaviour that challenges
    • that behaviour that challenges often indicates an unmet need
    • the effect of learning disabilities and behaviour that challenges on the person’s personal, social, educational and occupational functioning
    • the effect of the social and physical environment on learning disabilities and behaviour that challenges (and vice versa), including how staff and carer responses to the behaviour may maintain it

Delivering effective care

  • If initial assessment (see Assessment of behaviour that challenges) and management have not been effective, or the person has more complex needs, health and social care provider organisations should ensure that teams providing care have prompt and coordinated access to specialist assessment, support and intervention services. These services should provide advice, supervision and training from a range of staff to support the implementation of any care or intervention, including psychologists, psychiatrists, behavioural analysts, nurses, social care staff, speech and language therapists, educational staff, occupational therapists, physiotherapists, physicians, paediatricians and pharmacists

Physical healthcare

  • GPs should offer an annual physical health check to children, young people and adults with a learning disability in all settings, using a standardised template (such as the Cardiff health check template).* This should be carried out together with a family member, carer or healthcare professional or social care practitioner who knows the person and include:
    • a review of any known or emerging behaviour that challenges and how it may be linked to any physical health problems
    • a physical health review
    • a review of all current health interventions, including medication and related side effects, adverse events, drug interactions and adherence
    • an agreed and shared care plan for managing any physical health problems (including pain)

Support and interventions for family members or carers

  • Involve family members or carers in developing and delivering the support and intervention plan for children, young people and adults with a learning disability and behaviour that challenges. Give them information about support and interventions in a format and language that is easy to understand, including NICE’s ‘Information for the public’

  • Advise family members or carers about their right to, and explain how to get:
    • 
a formal carer’s assessment of their own needs (including their physical and mental health)
    • 
short breaks and other respite care 

  • When providing support to family members or carers (including siblings): 

    • recognise the impact of living with or caring for a person with a learning disability and behaviour that challenges
    • explain how to access family advocacy
    • 
consider family support and information groups if there is a risk of behaviour that challenges, or it is emerging
    • 
consider formal support through disability-specific support groups for family members or carers and regular assessment of the extent and severity of the behaviour that challenges 

    • provide skills training and emotional support, or information about these, to help them take part in and support interventions for the person with a learning disability and behaviour that challenges
  • If a family member or carer has an identified mental health problem, consider:
    • interventions in line with existing NICE guidelines or
    • referral to a mental health professional who can provide interventions in line with existing NICE guidelines

Early identification of the emergence of behaviour that challenges

  • Everyone involved in caring for and supporting children, young people and adults with a learning disability (including family members and carers) should understand the risk of behaviour that challenges and that it often develops gradually. Pay attention to and record factors that may increase this risk, including:
    • personal factors, such as:
      • 
a severe learning disability
      • autism

      • dementia

      • communication difficulties (expressive and receptive)
      • 
visual impairment (which may lead to increased self-injury and stereotypy)
      • physical health problems

      • variations with age (peaking in the teens and twenties)
    • environmental factors, such as:
      • abusive or restrictive social environments
      • environments with little or too much sensory stimulation and those with low engagement levels (for example, little interaction with staff)
      • developmentally inappropriate environments (for example, a curriculum that makes too many demands on a child or young person)
      • environments where disrespectful social relationships and poor communication are typical or where staff do not have the capacity or resources to respond to people’s needs
      • changes to the person’s environment (for example, significant staff changes or moving to a new care setting)

Assessment of behaviour that challenges

The assessment process

  • When assessing behaviour that challenges ensure that:
    • 
the person being assessed remains at the centre of concern and is supported throughout the process
    • 
the person and their family members and carers are fully involved in the assessment process
    • the complexity and duration of the assessment process is proportionate to the severity, impact, frequency and duration of the behaviour
    • everyone involved in delivering assessments understands the criteria for moving to more complex and intensive assessment (see Further assessment of behaviour that challenges in the full guideline) 

    • all current and past personal and environmental factors (including care and educational settings) that may lead to behaviour that challenges are taken into account
    • assessment is a flexible and continuing (rather than a fixed) process, because factors that trigger and maintain behaviour may change over time
    • assessments are reviewed after any significant change in behaviour
    • assessments are focused on the outcomes of reducing behaviour that challenges and improving quality of life
    • the resilience, resources and skills of family members and carers are taken into account
    • the capacity, sustainability and commitment of the staff delivering the behaviour support plan (see Behaviour support plan in the full guideline) are taken into account

Initial assessment of behaviour that challenges

  • If behaviour that challenges is emerging or apparent, or a family member, carer or member of staff (such as a teacher or care worker), has concerns about behaviour, carry out initial assessment that includes:
    • a description of the behaviour (including its severity, frequency, duration and impact on the person and others) from the person (if possible) and a family member, carer or a member of staff (such as a teacher or care worker)
    • an explanation of the personal and environmental factors involved in developing or maintaining the behaviour from the person (if possible) and a family member, carer or a member of staff (such as a teacher or care worker)
    • the role of the service, staff, family members or carers in developing or maintaining the behaviour
  • Consider using a formal rating scale (for example, the Aberrant Behavior Checklist or Adaptive Behavior Scale) to provide baseline levels for the behaviour and a scale (such as the Functional Analysis Screening Tool) to help understand its function

Risk assessment

  • Assess and regularly review the following areas of risk during any assessment of behaviour that challenges:
    • suicidal ideation, self-harm (in particular in people with depression) and self-injury harm to others

    • self-neglect

    • breakdown of family or residential support
    • exploitation, abuse or neglect by others
    • rapid escalation of the behaviour that challenges
  • Ensure that the behaviour support plan includes risk management (see Behaviour support plan in the full guideline)

Functional assessment of behaviour

  • Carry out a functional assessment of the behaviour that challenges to help inform decisions about interventions. This should include:
    • a clear description of the behaviour, including classes or sequences of behaviours that typically occur together
    • identifying the events, times and situations that predict when the behaviour will and will not occur across the full range of the person’s daily routines and usual environments
    • identifying the consequences (or reinforcers) that maintain the behaviour (that is, the function or purpose that the behaviour serves)
    • developing summary statements or hypotheses that describe the relationships between personal and environmental triggers, the behaviour and its reinforcers
    • collecting direct observational data to inform the summary statements or hypotheses
  • Vary the complexity and intensity of the functional assessment according to the complexity and intensity of behaviour that challenges, following a phased approach as set out below
    • carry out pre-assessment data gathering to help shape the focus and level of the assessment
    • for recent-onset behaviour that challenges, consider brief structured assessments such as the Functional Analysis Screening Tool or Motivation Assessment Scale to identify relationships between the behaviour and what triggers and reinforces it
    • for recent-onset behaviour that challenges, or marked changes in patterns of existing behaviours, take into account whether any significant alterations to the person’s 
environment and physical or psychological health are associated with the development or maintenance of the behaviour
    • consider in-depth assessment involving interviews with family members, carers and others, direct observations, structured record keeping, questionnaires and reviews of case records
    • if a mental health problem may underlie behaviour that challenges, consider initial screening using assessment scales such as the Diagnostic Assessment Schedule for the Severely Handicapped-II, Psychiatric Assessment Schedule for Adults with a Developmental Disability or the Psychopathology Instrument for Mentally Retarded Adults and seek expert opinion

Psychological and environmental interventions

Early intervention for children and their parents or carers

  • Consider parent-training programmes for parents or carers of children with a learning disability who are aged under 12 years with emerging, or at risk of developing, behaviour that challenges
  • Consider preschool classroom-based interventions for children aged 3–5 years with emerging, or at risk of developing, behaviour that challenges

Interventions for behaviour that challenges

  • Consider personalised interventions for children, young people and adults that are based on behavioural principles and a functional assessment of behaviour, tailored to the range of settings in which they spend time, and consist of:
    • clear targeted behaviours with agreed outcomes
    • 
assessment and modification of environmental factors that could trigger or maintain the behaviour (for example, altering task demands for avoidant behaviours) 

    • addressing staff and family member or carer responses to behaviour that challenges
    • a clear schedule of reinforcement of desired behaviour and the capacity to offer 
reinforcement promptly
    • a specified timescale to meet intervention goals (modifying intervention strategies that do not lead to change within a specified time)

Medication

  • Consider medication, or optimise existing medication (in line with the NICE guideline on medicines optimisation), for coexisting mental or physical health problems identified as a factor in the development and maintenance of behaviour that challenges shown by children, young people and adults with a learning disability (see also Interventions for coexisting health problems)
  • Consider antipsychotic medication to manage behaviour that challenges only if: 
psychological or other interventions alone do not produce change within an agreed time or 
treatment for any coexisting mental or physical health problem has not led to a reduction in the behaviour or 
the risk to the person or others is very severe (for example, because of violence, aggression or self-injury)
  • Only offer antipsychotic medication in combination with psychological or other interventions
  • Antipsychotic medication should initially be prescribed and monitored by a specialist (an adult or child psychiatrist or a neurodevelopmental paediatrician) who should: 

    • identify the target behaviour
    • 
decide on a measure to monitor effectiveness (for example, direct observations, the Aberrant Behavior Checklist or the Adaptive Behavior Scale), including frequency and severity of the behaviour and impact on functioning
    • start with a low dose and use the minimum effective dose needed only prescribe a single drug 
monitor side effects as recommended in the NICE guidelines on psychosis and schizophrenia in adults and psychosis and schizophrenia in children and young people
    • review the effectiveness and any side effects of the medication after 3–4 weeks
    • stop the medication if there is no indication of a response at 6 weeks, reassess the behaviour that challenges and consider further psychological or environmental interventions
    • only prescribe p.r.n. (as-needed) medication for as short a time as possible and ensure that its use is recorded and reviewed
    • review the medication if there are changes to the person’s environment (for example, significant staff changes or moving to a new care setting) or their physical or mental health

Reactive strategies

  • Only use reactive strategies for children, young people and adults with a learning disability and behaviour that challenges as a last resort and together with the proactive interventions described in Psychological and environmental interventions. When risks to the person with a learning disability or others are significant, or breakdown in their living arrangements is very likely, consider using reactive strategies as an initial intervention and introduce proactive interventions once the situation stabilises

Interventions for coexisting health problems

  • Offer children, young people and adults with a learning disability and behaviour that challenges interventions for any suspected or coexisting mental or physical health problems in line with the relevant NICE guideline for that condition (see also Medication). Adjust the nature, content and delivery of the interventions to take into account the impact of the person’s learning disability and behaviour that challenges

* See the Royal College of General Practitioners’ guide for GP practices on annual health checks for people with a learning disability for further information

© NICE 2015. Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges. Available from: www.nice.org.uk/guidance/ng11. All rights reserved. Subject to Notice of rights.

NICE guidance is prepared for the National Health Service in England. All NICE guidance is subject to regular review and may be updated or withdrawn. NICE accepts no responsibility for the use of its content in this product/publication.

First included: November 2018.