Acquired Brain Injury Series: Navigating the Maze - Common Issues Affecting Disability Support Provision and How to Sustain Engagement

In the first blog of this series, we examined the nature of psychosocial features associated with ABI (called neurobehavioural disability). In this second blog, we look at how these features affect interactions with formal disability supports (support workers, coordinators, and engagement with allied health services), and how to manage engagement in this context.

People with ABI are particularly vulnerable to strain and relationship breakdowns with not just close family and friends, but also with people providing disability supports, due to a range of neurobehavioural disturbances linked to ABI. People with ABI experience higher rates of divorce (compared to the general population), estrangement from children, reduced involvement in social networks from the past, and breakdown in relationships with friends. Loved ones are also more susceptible to carer burnout primarily due to the psychosocial disturbances associated with ABI rather than the physical or sensory disabilities they may have developed post-injury. These issues are often mirrored in the relationship between people with ABI and formal disability supports - carers. support coordinators, and allied health.

How does ABI affect engagement with carers, support coordinators, and allied health?

- Rapid fluctuation in rapport, wherein carers and support coordinators may report a period of good rapport and trust, but might quickly find themselves out of favour in the event of a miscommunication or disagreement (real or perceived), leading to requests for change in providers or personnel.

-Instances of verbal aggression or threats against carers and support coordinators. Also, due to poor self-monitoring and difficulties regulating emotions, there could be altercations in public that direct violence towards themselves and carers accompanying them.

- Due to daily negative affect associated with ABI, carers could experience greater daily emotional strain and subsequent burnout.

- Refusal or passive engagement with allied health can occur due to stressful experiences in the past, apathy and poor insight leading to denying the need for supports. Similarly, short term memory difficulties could lead to forgetting information that was previously discussed or agreed upon.

-Inflexibility and resistance to support ideas, due to difficulties in cognitive flexibility wherein they may hold fixed beliefs and may not respond to suggestions or changes even if it could benefit them. They may also repeatedly question the purpose and benefits of certain supports or daily plans. Similarly cognitive overload could lead to participants feeling overwhelmed quickly and lashing out at disability supports.

- Diminished capacity to make decisions regarding personal, health, financial, and legal matters and using eligible and available supports.

Sustaining engagement in this unique context

Re-framing support timelines: Timelines attached to both participant goals and support plans will need to consider the type and level of neurobehavioural disability. This could mean breaking down goals to the smallest or simplest actions and taking things very, very slow. This could also mean making progress and walking a few steps back if the participant isn’t ready. Get a psychologist to assess your participant to get more information and support recommendations on their neurobehavioural disability and how to work with it.

Prioritising the relationship and experience over outcomes: This could mean holding off on certain changes, and suggestions, or involvement of certain allied health professionals, if there is resistance and distress or is likely to affect their experience of a service in the present and hence future willingness to engage with such supports.

Prepare, prepare, prepare: This will involve preparing them weeks or even months in advance (depending on severity) for certain actions or supports. Topics need to be introduced with patience and discussed regularly to help them retain that information (use visual aids like a whiteboard if necessary). Focusing on what their cherished goals are, their beliefs about certain types of support, their concerns, getting them to think about how it could benefit them and tying that to their cherished goals will help with motivation. Ask your allied health professional to send some simple information regarding the upcoming assessment or capacity building supports, so that you can discuss that information with the participant. See here for more on issues of motivation and preparation.

Building conflict resolution and de-escalation skills in disability support personnel to recognise triggers, rehearse language and tone, and build skills of conflict resolution that recognises the integrity and personhood of disability support staff and is compassionate towards the participant’s challenges.

Providing supervision and de-briefing for carers and colleagues to provide support on tough days and problem-solving around difficult situations.

Source: Williams, C., Wood, R. L., Alderman, N., & Worthington, A. (2020). The psychosocial impact of neurobehavioral disability. Frontiers in neurology, 11, 119.

Brain Injury Rehabilitation Directorate, Agency for Clinical Innovation, NSW Health. Working with people with acquired brain injury. Retrieved February 6, 2023, from http://www.abistafftraining.info/index.html