Homes Not Hospitals: Reflections After Visiting Mencap’s Fight for Freedom Exhibition 

Summary

Their stories remind us why we must keep pushing, loudly, consistently, relentlessly for a world where no family has to fight for their child’s freedom.

Across the UK, around 2000 autistic people and people with complex learning disabilities are still being held in mental health hospitals, including over 200 children. Often miles from home, often for years, and often without a mental health diagnosis. The average length of stay is nearly 5 years, 305 people have been detained for over 10 years. Many entered these settings in crisis and never came back out. Families describe locked doors, isolation, restraint, over‑medication, and environments that escalate distress rather than support recovery.

Mencap’s Homes Not Hospitals: The Fight for Freedom exhibition brings these hidden realities into the light. Through recreated rooms, personal belongings, audio testimonies, and family stories, it shows what institutionalisation really looks like, not in policy documents, but in lived experience. It exposes the human cost of a system that still detains people instead of supporting them in their communities, and it asks us to confront the question no family should ever have to face: How did we allow this to happen?

If you haven’t read Part One, which introduces the exhibition and the families behind it, you can read it here before continuing. 

When we first shared news of Mencap’s Homes Not Hospitals: The Fight for Freedom exhibition, we knew it would be powerful. What we didn’t anticipate was just how deeply it would stay with us long after leaving the gallery.

This exhibition is not simply something you view, it’s something you feel. It sits heavy in the chest, and urgent in the mind. It is a testament to families who have fought (and are still fighting) for their children’s freedom, dignity, and basic human rights.

Inside the Stories No Child Should Ever Live Through

Before you even reach the first display, the reality hits you. These are not isolated incidents or rare tragedies. These are the lived experiences of children and young people who were locked away in mental health hospitals, sometimes for years, sometimes for most of their childhoods. Many were detained not because they needed psychiatric care, but because community support wasn’t funded, coordinated, or available.

The exhibition makes visible what is usually hidden behind clinical language and closed doors. You see bedrooms that look more like cells. You hear families describe watching their child disappear behind locked wards, miles from home. You learn how quickly “assessment” becomes “detention,” how easily distress is labelled as “challenging behaviour,” and how often children are medicated into silence instead of supported to feel safe.

It is impossible to walk through these rooms without feeling the weight of what has been taken from these young people. Their freedom, their childhood, their sense of safety, their right to be understood rather than controlled.

Our Director at SEND Tutoring Ione Inness put the experience into words with powerful honesty:

“It’s a deeply moving exhibition about each family’s fight for justice and for their child’s freedom and independence. Too often the accounts from families felt it was the cheaper option being chosen by ‘professionals’ for their child over what was best and the happiest. It’s an incredibly moving exhibition that shines a light on families fighting the system for basic human rights and too many children and young people are left to the mercy of these ‘care’ institutions and companies fuelled by money rather than the cost of the young person’s mental health and trauma being incarcerated for years on end. It also highlights the long lasting damage of unskilled staff working with the most vulnerable and medicating people when they don’t need it. Take some tissues it’s not for the faint hearted”

When Distress Is Misunderstood And Mislabelled

A powerful shared statement from Anna and Sean Kennedy adds another essential layer to the conversation, one that speaks directly to the root of so many crises. Anna Kennedy OBE is one of the UK’s most recognised autism advocates. She founded Anna Kennedy Online, a charity dedicated to raising autism awareness, challenging stigma, and improving support for autistic children, young people, and adults. Her husband, Sean Kennedy, has been a long‑standing partner in this work. Together, they have championed the rights of autistic people, highlighted systemic failings, and pushed for environments where autistic distress is understood rather than punished, and where support is shaped by need rather than convenience. 

Drawing on decades of lived experience and national advocacy, Anna Kennedy OBE and Sean Kennedy offer a perspective that cuts straight to the heart of the issue:  

“Some specialist care professionals may still misunderstand autistic distress and mental health, for example by interpreting distress primarily as behaviour or non-compliance rather than as a possible response to overload, anxiety, pain, fear, or unmet need. Mental health difficulties in autistic people may also present atypically, including through shutdown, withdrawal, agitation, or reduced functioning, rather than through conventional verbal disclosure.

One point that particularly resonates is the importance of considering both the individual’s presentation and the surrounding environment. In some cases, it may be more helpful to ask not only what difficulties the person is experiencing, but also whether their distress is being shaped by external factors and what they may be trying to communicate.”

“Crisis Doesn’t Just Happen in Families. Crisis Begins Between Agencies.”

Barry McKenzie is an adoptive parent and advocate who has spent years naming the realities families carry when services don’t join up. His work gives voice to what many parents live through but seldom see acknowledged.

He begins with a truth that many families only realise after years of struggle:

“I want to tell you something that took me years to understand. Crisis doesn’t just happen in families. Crisis begins between agencies.”

He describes the invisible spaces, the ones that don’t appear on any form or flowchart, where accountability dissolves:

“In the space where responsibility blurs, where one service ends and another hasn’t begun, where everyone is involved but no one is accountable…Health said, ‘Try education.’ Education said, ‘That’s CAMHS.’ CAMHS said, ‘It’s a social care issue.’ Social care said, ‘Post-adoption support will lead.’ And post-adoption support said, ‘We can advise, but we can’t lead.’”

He names the language that fills these gaps, language that sounds professional but leaves families stranded:

“I started to notice the language that lives in those spaces between agencies.

• ‘We’ll refer you on.’
• ‘They’re best placed to help.’
• ‘That’s outside our remit.’
• ‘We’ve closed our involvement.’
• ‘I’ll copy them into the next email.’”

“Who is actually accountable for my child? Not who is attending. Not who is advising. Not who is ‘feeding in.’ Who is leading?” “It’s strange, isn’t it? Everyone is involved. No one is responsible.”

And then the question that should unsettle every professional who reads it:

“In a system built to safeguard children, how can there be so many professionals involved and still no one clearly responsible?”

Finally, he names the truth families already know:

“If families are the only constant, the only ones who cannot step away, what does that say about where the real accountability sits? That’s not partnership. That’s survival.”

Barry’s words are a mirror held up to the system, a reminder that crisis is not born in the home, but in the gaps between services. His insight gives language to what so many families live through daily: the exhaustion of carrying the entire structure on their backs because no one else is holding the whole picture.

What This Exhibition Forces Us to Confront

For those of us working in SEND education, these stories are not abstract. They echo the realities we see in classrooms, in meetings, and in the quiet conversations with families who are exhausted from holding everything together.

The exhibition forces us to confront:

• how often SEND profiles are still misunderstood by health, education, and social care professionals
• how quickly responsibility is passed on
• how slowly support is put in place
• how often families become the coordinators of everything
• how trauma escalates when systems stand still

It also highlights the extraordinary resilience of families who refuse to let their children be forgotten.

This Isn’t Just Emotional. It’s a Call to Action

The exhibition is moving, yes, but it is also a demand.

A demand for:

• accountability
• skilled, SEND‑informed support
• community provision
• joined‑up services
• homes, not hospitals

It asks us to stop accepting the narrative that this is inevitable.

It isn’t. It never was.

Leaving the Exhibition

When you step back out into the street, the stories don’t stay behind. They follow you. They sit with you. They remind us that this is not history.

It is happening now.

To children.

To families.

In our communities.

Their stories remind us why we must keep pushing, loudly, consistently, relentlessly for a world where no family has to fight for their child’s freedom.

Support for Every Learner
Discover how SEND Tutoring supports students with a wide range of needs, including autism, dyslexia, PDA, SEMH, epilepsy, and more. 

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Ella Jones

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