Key priorities for implementation

The following recommendations have been identified as priorities for implementation. The full list of recommendations is in section 1.

General principles of care

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

  • 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.

Delivering effective care

  • If initial assessment (see section 1.5) 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.

Support and interventions for family members or carers

  • 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.

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 recommendation 1.5.8)

    • 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 recommendation 1.6.1) are taken into account.

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 recommendation 1.6.1).

Functional assessment of behaviour

  • 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

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 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.

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