Exploring learning disabilities: supporting belonging
Exploring learning disabilities: supporting belonging

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Exploring learning disabilities: supporting belonging

1.1 Assessment and treatment units: the new institutions?

In 2018, the Rightful Lives online exhibition was launched in the UK, arguing that the rights of many people with learning disabilities were not being upheld. This included people who live in Assessment and Treatment Units (ATUs) or private facilities where people are sometimes locked away for years, with no say about what happens to them.

ATUs were brought to public attention in 2011 by a BBC Panorama programme that exposed the abuse happening in the Winterbourne View private hospital. This led to six members of staff going to prison, in recognition of the seriousness of their offences. The government then set up the Transforming Care programme to get people out of ATUs. But at the last count (2018) there were still over 2,300 people living in such units.

In 2019, Panorama broadcast a second programme which showed disturbingly similar abuse happening in another ATU – Whorlton Hall – eight years later.

The lack of suitable community-based services means that even when people are discharged, they often find themselves back in these private hospitals within a matter of weeks or months. On a range of counts, the situation facing many people with learning disabilities and autism in these units represents a fundamental breach of human rights.

Activity 2 Eden’s story

Timing: Allow about 10 minutes
  1. Watch this video about Eden, who has autism and mild learning disabilities. After you have finished watching, note down your immediate reaction to the video.
Download this video clip.Video player: Video 3
Skip transcript: Video 3

Transcript: Video 3

NARRATOR
This is Eden's story. Eden has autism and mild learning disabilities. Eden's early years were full of failure. He was failed, moved from school to school where his needs were consistently not met, despite the best efforts of some teachers, and where he was bullied. He was medicated from the age of eight, thus starting a trend that was to haunt him all his life.
Once he got to secondary school age, Eden was left hanging with the promise of a school place for two years. Yet even when a place was found, it turned out to be unsuitable. During all this time, Eden was stuck at home without the education that was his right. As time went by, the indecision and instability dragged on. Educational opportunities were found, but not explored. Or, yet again, were just not right for Eden.
He was moved from pillar to post. But there never seemed to be any learning at all. Instead, there was very little understanding of Eden's autism. And his anxiety level spiralled. Sometimes Eden was drugged and bruised.
Eventually, he spent six months in a specialist hospital in Birmingham, where he got on well. However, the recommendations made on discharge for his care were not met. And so the cycle soon started up again.
All this was so stressful for the family. His mum's health suffered. And Eden's siblings were all affected. Yet, when he was at home his mum tried to help him with music, dancing, swimming, cooking, and other activities that he loved.
She says, all I ever wanted was my son to have a school and one that knew autism. Sometimes I regret ever asking for help, as I feel his life was taken away, and he has been punished for having autism. He has been failed all his life by professionals that I thought were meant to help. I have always been there. So he trusts me. But it is an existence. It is not a life. It's heartbreaking.
The years of failure took their toll, and eventually Eden was detained under the Mental Health Act at the age of 17. His life was about to get even worse. Eden's first hospital was a medium secure forensic unit. Yet, Eden was not a criminal. He had no forensic history. He was kept in long term segregation for a lot of the time, as he was picked on by other patients. He had no fresh air, no exercise. And he gained 16 stone in weight.
He was meant to be moved shortly after he was detained, as it was obviously the wrong place for him. But he was left there for over five years. Nothing was done to address his autism and learning disabilities and the anxiety that accompanied them. The answer to his distress was simply to increase his medication. His behaviour, understandably, deteriorated, and he ended up on a criminal section.
None of it was his fault. His mother states, he was locked away in a room with no toilet or access to one. It was horrendous. The CQC didn't help. I thought he would end up dying in that room with all the antipsychotic meds on him. Just meals taken in. We had long periods of good behaviour from him. But they kept resectioning him on a 37. It was easy for them to just keep him there.
At the age of 23, Eden was moved to another hospital, this time in Norfolk, hundreds of miles from home and in a very isolated location. Again, promises were made that it would be for a short time. Again, promises were not kept. He was kept isolated and fed food through a hatch. The medication regime continued. And there was no support towards acquiring any basic skills. Family had to travel a 13 hour round trip to visit him. But they steadfastly carried on, visiting every week.
Finally, after a huge battle, Eden's discharge was agreed. He was coming home to London to his own house with his own care team. However, effective transition planning was impossible due to the distances involved. There was no provision for local health and social services support and no crisis planning. Eden did come home. And he did really well at first. He was able to visit the family home and start to have a proper life.
Yet, the old mistakes were made again. Goalposts were moved. Promises not kept. And Eden's anxieties returned. He was recalled to hospital. And he is still there. They said it would just be for a week. But months have gone by now.
Eden doesn't deserve any of this. He is a lovely man with a caring nature. It is about time he was given the chance of a proper life. Bring Eden home.
End transcript: Video 3
Video 3
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Answer

One person who watched this video said:

I was utterly shocked by what Eden and his family have been through. How can this be happening to people in 21st-century Britain? Mistakes being made over and over again. No one listening to Eden and his family. The fact that Eden was moved so far from home, and then moved back without proper support in place. And the conditions in the units that his mum describes sound inhumane.

  1. Complete the drag and drop activity below to identify the breaches of Eden’s human rights that were described in the film:

Using the following two lists, match each numbered item with the correct letter.

  1. Right to education (Article 2 Protocol 1)

  2. Right not to be tortured or treated in an inhuman or degrading way (Article 3)

  3. Right to liberty (Article 5)

  4. Right to respect for private and family life, home and correspondence (Article 8)

  • a.Being placed hundreds of miles from his home and family

  • b.Kept in secure units for many years with no effective planning for his discharge home

  • c.Eden put on high levels of anti-psychotic medication, denied opportunities to exercise, fed through a hatch, kept in a secluded room with no toilet

  • d.Eden left without a school place for two years

The correct answers are:
  • 1 = d
  • 2 = c
  • 3 = b
  • 4 = a

You may have found it shocking and distressing to hear about Eden’s experiences. Sadly, his experience is not unique and there are many other people in similar situations. You can find out more on the Rightful Lives [Tip: hold Ctrl and click a link to open it in a new tab. (Hide tip)] website.

In the next section you will explore how people with learning disabilities have learned to speak up for themselves and fight for their rights.

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