Spotlight issue: Intellectual disability, communication and positive behaviour support

For people with intellectual disability, communication issues are a significant barrier to safe health care. This is because:

The person’s intellectual disability can affect their ability to communicate verbally and to understand what others are saying
The person’s communication may be a combination of verbal, non-verbal and behavioural communications^[75]
Behavioural communication, under stress or from past traumas, may include behaviours of concern.

A behaviour of concern is defined as a behavioural response that creates a risk to the safety or wellbeing of the person or those around them.^[76] It is important to recognise that a behaviour may indicate an unmet healthcare need, including pain or discomfort.

Not all people with intellectual disability and communication difficulties display behaviours of concern. Some people may only display behaviours of concern in response to specific triggers such as new or distressing environments.

However, some people with intellectual disability and communication difficulties may display behaviours of concern in all settings. For these individuals, healthcare barriers and stressors are compounded, and they are at high risk of poor health outcomes and use of restrictive practices.

The safety and quality risk of misdiagnosis is relevant in this situation. Life-threatening conditions can be missed if the person has a behavioural response to pain or physical symptoms that are, in turn, attributed to the person’s intellectual disability.

The type and extent of a person’s behaviour of concern depends on the immediate context, how unwell they are, their existing communication modes and their psychosocial history.

Important NSQHS Actions

See the discussion of Action 1.27 in this User Guide, as well as the following Actions.

Action 1.29	The health service organisation maximises safety and quality of care: Through the design of the environment By maintaining buildings, plant, equipment, utilities, devices and other infrastructure that are fit for purpose.
Action 5.14	The workforce, patients, carers and families work in partnership.
Action 5.33	The health service organisation has processes to identify and mitigate situations that may precipitate aggression.
Action 5.34	The health service organisation has processes to support collaboration with patients, carers and families to: Identify patients at risk of becoming aggressive or violent Implement de-escalation strategies Safely manage aggression, and minimise harm to patients, carers, families and the workforce.
Action 5.35	Where restraint is clinically necessary to prevent harm, the health service organisation has systems that: Minimise and, where possible, eliminate the use of restraint Govern the use of restraint in accordance with legislation Report use of restraint to the governing body.
Action 5.36	Where seclusion is clinically necessary to prevent harm and is permitted under legislation, the health service organisation has systems that: Minimise and, where possible, eliminate the use of seclusion Govern the use of seclusion in accordance with legislation Report use of seclusion to the governing body.

Strategies for improvement

Strategies to support Actions 1.29, 5.14, 5.33, 5.34, 5.35 and 5.36 include:

Designing the environment to include Easy Read posters, quiet rooms and facilities that allow families or supporters to be with the person
Developing policies about reasonable adjustments for communication and behaviour. These policies can support clinicians and hospital staff to provide positive behaviour support. Positive behaviour support plans include guidance on:
- Effective communication, identification of risks, and prevention of escalation or de-escalation of a situation
- Environmental strategies that are needed to support the person, such as speaking slowly, providing quiet spaces, adjusting communication and physical contact styles, adjusting medical procedures and managing a fear of needles
Ensuring procedures support the involvement of families or disability support workers in assessing risk and developing strategies
Considering clinical, communication, psychosocial and environmental factors. Could the person’s behaviours be the result of pain, other symptoms or emotional distress? Ask family, supporters or guardians whether these behaviours have occurred before and in what circumstances
Ensuring that clinicians and hospital staff who interact or coordinate care for people with intellectual disability understand how they as care providers can respond to individuals and manage the environment
Identifying alternate models of care or patient pathways to facilitate care. Examples include those provided by:
- South Australian Intellectual Disability Service
- Austin Health Disability Service
- GeneEQUAL toolkit
- Better Health Channel Disability Liaison Officer program
- Western Australian Department of Health Disability Health Network
Establishing organisational relationships with the National Disability Insurance Agency and NDIS service providers to develop guidelines for people with behaviours of concern when they are admitted to hospital. For people with significant behaviours of concern, developing a joint plan (pre-admission or at admission) between the person, family, NDIS service providers and/or guardians to identify potential risks and mitigation strategies in a hospital environment
In line with the Psychotropic Medicines in Cognitive Disability or Impairment Clinical Care Standard, if the person presents with behaviours of concern or these emerge during the admission, assessing the potential reasons for the behaviours in consultation with the person and their family, supporters or guardian.

Resources

Blue Knot has developed the first Guidelines for Trauma Informed Practice: Supporting People with Disability who have experienced Complex Trauma. A plain English version is also available: Plain English Guide: Supporting People with Disability who have experienced Complex Trauma.
The Berry Street Take Two program has developed the Taking Time Framework to guide service providers who support people with intellectual disability. The framework can be downloaded for free from the Berry Street resources and bookstore.
National Institute for Health and Care Excellence Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges – guidelines for health professionals.
Autism and developmental disability: Management of distress/agitation is guidance from the Royal Children’s Hospital Melbourne on inpatient management of anxiety and agitation in young people with developmental disabilities (including autism) who may require medical or surgical care.
Caring for people displaying acute behavioural disturbance [i] from Safer Care Victoria notes the importance of pain in people with intellectual disability as a possible underlying cause of acute behavioural disturbance.
Challenging behaviour in a person with developmental disability covers the use of restrictive practices for challenging behaviour in a person with developmental disability. Any form of restrictive practice (for example, physical, chemical or mechanical restraint, or seclusion or containment) has legal implications. Use of restraint during an emergency should be a ‘last resort’ and only in response to a behaviour that might cause harm to the person or others.
POSSUM Restraint-free Sedation for Kids is a model of care implemented at the Sunshine Coast Hospital and health service organisation aimed at reducing anxiety and distress experienced by children because of previous medical procedures.
The A better way to care user guide (specifically Actions 5.29 and 5.30) provides strategies and resources to assist in establishing a system that has capacity to respond to the needs of people with cognitive impairment. These strategies are all relevant to people with intellectual disability.
The NDIS Quality and Safeguards Commission has produced a suite of resources on Understanding behaviour support and restrictive practices – for providers.