Disability Awareness Hub: Huntington’s disease

November 7, 2025

Understanding Huntington’s disease

Huntington’s disease (HD) is a rare, inherited neurological condition that affects the brain’s ability to control movement, cognition, and behaviour. It’s progressive, complex, and deeply personal—impacting not just the individual, but their families, carers, and support teams.

As disability professionals, it’s vital we understand the unique challenges of HD and how we can respond with compassion, skill, and evidence-based support.

What is Huntington’s disease?

HD typically appears between the ages of 30 and 50, though it can occur earlier or later. It causes a gradual decline in:

Motor skills (e.g. involuntary movements, balance issues)
Cognitive function (e.g. memory, planning, decision-making)
Emotional regulation (e.g. irritability, depression, impulsivity)

As the disease progresses, individuals may require high levels of support in daily living, communication, and behaviour management.

The role of Positive Behaviour Support (PBS)

Behaviour changes in HD are often misunderstood. What may appear as “challenging behaviour” is frequently a response to frustration, confusion, or unmet needs.

Positive Behaviour Support (PBS) offers a respectful, person-centred approach that focuses on:

Understanding the function of behaviours
Reducing environmental triggers
Teaching alternative communication or coping strategies
Improving quality of life through proactive planning

PBS is not about control—it’s about supporting people to live with dignity, autonomy, and connection, even as their needs evolve.

Practitioner spotlight: Gary Darbyshire

One practitioner leading the way in this space is Behaviour Support Practitioner, Gary Darbyshire. Gary has a deep passion for supporting people with Huntington’s disease and is committed to helping them maintain exceptional care and quality of life.

“Huntington’s is a complex condition, but with the right support, people can still live meaningful lives. PBS gives us the tools to understand, adapt, and walk alongside them with empathy.”

— Gary Darbyshire

Gary’s work highlights the importance of tailored, flexible support strategies that evolve with the person—not just the diagnosis.

What can providers and coordinators do?

Educate your teams: Ensure staff understand HD and how it affects behaviour and communication.
Engage behaviour practitioners early: Don’t wait for a crisis—PBS is most effective when it’s proactive.
Support families: HD is hereditary and emotionally complex. Families often need guidance, reassurance, and connection to resources.
Plan for progression: Build flexible support plans that can adapt as the person’s needs change over time.

Raising awareness about Huntington’s disease is more than a clinical responsibility—it’s a human one. With the right knowledge and approach, we can ensure that people with HD are not defined by their diagnosis, but supported to live with dignity, purpose, and care.

If you're concerned about someone you know or you would like to learn more, reach out to learn how we can help.

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The new NDIS needs assessment

November 7, 2025

Are you ready for a fairer, simpler NDIS? What the new support needs assessments mean for you and your clients The National Disability Insurance Scheme (NDIS) is evolving, and one of the most exciting changes on the horizon is the introduction of support needs assessments, set to roll out from mid-2026. These assessments promise to make planning fairer, more consistent, and less stressful for participants, families, and providers alike. So, what’s changing and why does it matter? What are support needs assessments? Support needs assessments are a new way for the NDIS to understand what supports a person with disability truly needs. Instead of relying on participants to gather their own reports and evidence, the NDIS will use a validated, strengths-based tool called the I-CAN (Instrument for Classification and Assessment of Support Needs) — developed by the Centre for Disability Studies and refined over 20 years. This tool focuses on a person’s support needs, not just their impairments, and is built on the globally recognised International Classification of Functioning, Disability and Health. Why this is a game-changer For too long, participants have faced the burden of sourcing costly reports, navigating complex systems, and advocating for their needs in planning meetings. The new assessments will: remove the need for participants to provide their own evidence create fairer and more equitable budgets offer more flexibility and choice in support arrangements ensure consistency across the NDIS planning process And importantly, the government will fund these assessments, not participants. How will it work? Trained, accredited assessors will meet with participants aged 16 and over to complete the assessment. The process will include: a personalised interview using the I-CAN tool consideration of environmental and personal circumstances additional assessments for complex support needs The NDIA is working closely with the disability community to co-design this process, ensuring it reflects lived experience and is accessible to all. What’s next? The rollout will be gradual, with full implementation expected over five years. This phased approach allows for real-time feedback and continuous improvement. Most participants will continue using the current planning process for now, but the NDIA will notify individuals when it’s time for their assessment. Final thought: planning with purpose This isn’t just a new tool — it’s a new mindset. By focusing on what people need to live well, rather than what they can’t do, the NDIS is taking a major step toward a more inclusive, empowering future. Are you ready to support your clients through this change? Now’s the time to learn, prepare, and embrace a more proactive approach to planning.