What followed was not a story of care, but of conflict. After her eventual discharge, the only option offered was residential care. Her family spent years fighting social services simply to allow her to live at home, with her family, on her own terms. By the time Emmy reached her late teens, her life and her family’s ability to survive had become dominated by legal battles to secure adequate support. 

Twenty five years later, Thea was born. 

She was diagnosed with a rare neurodegenerative condition just under a year later. Unlike Emmy, she received a diagnosis because genetic testing had advanced and her condition had already been identified. But in practice, that diagnosis became the end rather than the beginning of support. There was no treatment and no meaningful plan. A physiotherapist visited. An OT provided some play equipment. Then the professionals disappeared. 

Unlike Emmy, Thea never met a social worker. 

Institutionalisation was no longer an option and that is progress. But meaningful, sustained support was also absent. Her family navigated life with a child who could not walk, talk, eat independently, or survive without constant care, seizures, medical equipment, and round the clock supervision. Sink or swim. 

When we met, after both Emmy and Thea had died, the parallels were impossible to ignore. Different decades. Different language. Same outcome. 

What have we learned in twenty five years? 

Disabled children now have the right to live with their families. 

But families are still expected to shoulder the risk, the labour, and the trauma alone. 

Despite medical advances and policy reform, support for families of children with complex medical and developmental disabilities remains fragmented, reactive, and often adversarial. Parents are still required to be full time carers and expert system navigators, while their lived expertise and humanity are routinely undervalued. 

Iris Possibilities exists to change this.

We use lived experience not as anecdote, but as infrastructure to redesign how support actually works for families with complex needs. 

This is not radical. 

It is not extravagant. 

It is basic, humane support and it is long overdue. 

The real question is not whether we can afford to do better. 

It is why, after decades of evidence, we still do not.