Building Relationships: A Cornerstone of Exceptional Disability Care

In the world of disability care, relationships are not just about enrichment—they are the foundation of safety, dignity, and meaningful living. This belief was exemplified through the story of Alice, a remarkable woman whose life demonstrates the power of person-centred care, shared by Stewart Pope of McArthur Health Support.

Alice's Inspiring Journey

Alice's life changed irrevocably at the age of two when a viral brain infection left her with spastic tetraplegic cerebral palsy and complete ventilator dependence. Her story is one of resilience, creativity, and an unyielding drive to live a fulfilling life despite immense challenges.

Over the years, Alice’s care model evolved from hospital-based to community supported, combining critical care expertise with innovative support mechanisms. Her ability to communicate using a self developed language in ICU and later with assistive technology like Siri highlights her determination to connect with the world around her.

A Model for Sustainable Care

Alice’s care journey underscores the importance of tailored, sustainable support. Her team consists of registered nurses and trained support workers, each playing a critical role in managing her complex needs. This collaborative approach has enabled Alice to lead an active life, completing her education, working part-time, and enjoying social activities.

Challenges Within the System

Despite its success, Alice’s care model has faced persistent challenges within the National Disability Insurance Scheme (NDIS). Recent decisions threaten to replace her bespoke model with a generic support worker framework, which has been proven ineffective and dangerous in her case. This highlights a broader systemic issue of balancing cost-saving measures with the safety and dignity of people with complex needs.

A Call to Action

Alice’s story is a powerful reminder of what is at stake when relationships and personalised care models are undervalued. For people like Alice, these relationships are not just beneficial—they are essential to their survival and quality of life. As Stewart emphasised, 'Relationships are about enrichment. For Alice, they are life itself.'

The Way Forward

The journey of Alice and her dedicated team of professionals challenges us to advocate for care models that prioritise the person. It is a call for policymakers, care providers, and the broader community to recognise that effective disability care begins and ends with relationships.