Frustration over MPs’ failure to hear disabled people’s voices on ATU scandal

Disabled activists have welcomed a new parliamentary report that calls for an end to most admissions to long-term health institutions for autistic people and people with learning difficulties, but they have criticised its lack of direct evidence from disabled people.

The cross-party Commons health and social care committee this week released its report on how autistic people and people with learning difficulties are being treated in long-term mental health institutions.

It said there were still more than 2,000 such people in secure mental health inpatient settings in England, where they are “unable to live fulfilled lives and are too often subject to treatment that is an affront to a civilised society”.

The average length of stay in one of the so-called assessment and treatment units (ATUs) – where autistic people and people with learning difficulties are often detained – is a “shocking” six years, often because of the “totally inadequate” provision of alternative community services.

In ATUs, they can experience “intolerable treatment”, including abusive physical and chemical restraint, and long-term seclusion and segregation.

The one autistic person who spoke to the inquiry was Alexis Quinn, who in February described the system to the committee as “brutal… aggressive… routine-less, chaotic, sensory-charged warehousing”, and often situated hundreds of miles from the autistic person’s home.

She said then that she had seen no improvement in ATUs since she was last detained about four years previously.

Among its recommendations, the committee calls for a ban on new long-term admissions of autistic people and people with learning difficulties to such institutions, except for forensic cases (where there has been criminal behaviour).

It also recommends the closure of all ATUs within two years and for them to be replaced with person-centred services, as well as an independent review of all deaths of autistic people and people with learning difficulties in both inpatient and community settings.

But disabled campaigner Simone Aspis, director of consultancy Changing Perspectives, said the committee’s failure to take more oral evidence from people with learning difficulties and autistic people was “absolutely shameful”.

She said: “We are constantly getting all these reports being published by politicians, by government, independent reviews, and very rarely do they ever involve or engage with people with learning difficulties or people who are autistic.”

Aspis, who has been involved in securing the release of people from ATUs for several years, said: “We are never asked what needs to be changed. If we are not involved in terms of having our voice heard, then how do things change?

“History tells us every time that nothing happens unless we are absolutely at the centre of making recommendations for change.

“Clearly they don’t want to hear our voices.”

She also highlighted the committee’s failure to publish an easy read version of its report, which meant it was not accessible to many of the people it was making recommendations about.

But she welcomed the evidence given by Alexis Quinn, and many of the report’s recommendations.

Aspis also said she was concerned about the committee saying that “forensic” cases could still be admitted to long-term institutions, as she said that many autistic people and people with learning difficulties end up with criminal records because of the failure to understand their behaviours and due to a lack of support.

She also highlighted the report’s failure to mention the need for advocacy for people in such institutions.

Kat Williams, a director of Autistic UK, which is run by autistic people, said she was also disappointed at the failure to hear from autistic-led organisations and those led by people with learning difficulties, with the “excellent” Alexis Quin apparently the only autistic person to speak to the committee.

She was also critical of the failure to produce an easy-read version of the report.

She said the report’s failure to address how people with learning difficulties and autistic people would be informed of their rights was a “glaring omission”.

And she said the report should have made it mandatory that any new staff training must be co-produced with people with learning difficulties and autistic people.

Williams also criticised the report’s “inappropriate” recommendation for a new post of “intellectual disability physician” to co-ordinate care for both people with learning difficulties and autistic people.

She said that most autistic people do not have learning difficulties, while most people with learning difficulties are not autistic.

Williams said the report “raises several good points”, but that until they were actioned, and autistic people and people with learning difficulties were “involved as full partners in the implementation of its recommendations, we will reserve our optimism”.

The committee has so far refused to explain why there was no easy read version of the report, other than stating that select committees “don’t produce easy read versions of reports but can produce large print versions for visually impaired people”.

Asked why no organisation led by autistic people or people with learning difficulties was asked to give oral evidence, and why only one autistic person – and no person with learning difficulties – gave oral evidence, a spokesperson said the committee had been “keen to hear directly from people whose lives had been affected by the treatment they or their family members had received”.

She listed all those who had given evidence, including representatives of several non-user-led organisations, without explaining why the committee had not done more to hear the direct testimony of disabled people.

She added: “The committee also accepted written evidence that represented the views of those with lived experiences.”

None of this written evidence appears to have come from a user-led organisation.

The Department of Health and Social Care (DHSC) said it would respond to the report in due course.

A DHSC spokesperson said: “Our priority is to ensure autistic people and people with learning disabilities are supported to live well in their communities, receive safe and high-quality care, and are treated with dignity and respect.

“The number of inpatients in mental health hospitals with autism and learning disabilities has reduced by around 30 per cent in recent years, and we’re building on this with additional funding to cut admissions further and support the discharge of these patients back into the community.

“Earlier this year, we outlined proposals to limit the scope for people with autism and learning disabilities who do not have a mental health condition to be detained in the Mental Health Act white paper.”

Picture: Simone Aspis (left) and Alexis Quinn

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