Homes Not Hospitals – Ava’s Story

No Appropriate Housing, No Way Out

The Homes Not Hospitals campaign addresses the urgent issue of persistently high numbers of people with learning disabilities and autistic people in inappropriate inpatient units. We are proud to support this campaign; it highlights why organisations like Zetetick Housing are vital to ensure agency, stability and safety for those who need it most.

At Zetetick, we work hard to ensure that our tenants lived experience directly informs our work and shapes services for the better. We asked Ava – an activist, Zetetick tenant and founding member of our Ambassador programme – to write a piece about her own experiences with hospitalisation.

A Hidden Human Rights Scandal

The Homes Not Hospitals campaign highlights one of the biggest human rights scandals in the UK, where people with learning disabilities and autistic people are being detained in mental health institutions for months or years longer than necessary, due to a lack of appropriate housing.

Detained Without Medical Need

I have lived experience of being detained in hospital, not because of a medical need, but due to the system failing to provide me with the right support. I wasn’t treated as human being with access needs; I was treated as a patient to be managed.

Discharged Into Instability

Prior to being hospitalised, social care had drastically cut my support hours, resulting in me being evicted from my flat. Due to a rushed transition out of hospital, I didn’t have any permanent accommodation set-up upon discharge. A limited social care budget meant that I was moved between multiple different short-term Airbnbs over the next six months. I was pushed to my limits, the lack of support caused anxiety, panic attacks and burnout.

Living Without a Place to Call Home

Due to a long history of instability, I couldn’t imagine myself in any home that actually felt like mine. Eventually Zetetick found me a permanent bungalow. However, inconsistent agency staffing and the way support was delivered affected my sense of safety and ownership of my home, making it impossible for me to settle.

Photo of Ava, Zetetick tenant, holding a sign that says "Free our people, bring them home". — Homes not hospitals

Turning Lived Experience into Change

My lived experience of being failed by the system ignited a deep determination in me to drive meaningful change. I use my voice to push for systems that truly respond to human needs, rather than forcing individuals to adapt to them. I now deliver autism training for organisations, sit on the committee of a local self-advocacy group and am an ambassador for Zetetick.

Nothing About Us Without Us

The voices of people with learning disabilities and autistic people must shape every decision that is being made. No one should be detained in hospital just because the system cannot imagine a better alternative. The focus should be creating real personalised support, accessible housing alongside skilled community teams and true co-production with people with lived experience.