Report on the detention of young people with learning disabilities and/or autism

On 1st November 2019, the Parliamentary Joint Committee on Human Rights (JCHR) published a report on the detention of young people with learning disabilities and/or autism. The report condemns the “horrific reality” of conditions and treatment under which many young people with learning disabilities and autism are detained in mental health hospitals, “inflicting terrible suffering on those detained and causing anguish to their distraught families”. The full report can be downloaded here:

The British Institute of Human Rights have published an ‘explainer’ of the report which is available here: 

We are grateful to Sheffield Citizens Advice for forwarding this information to the Sheffield Autistic Society. We feel this is so important that we are reprinting the official summary of the report below:

“We regard ourselves as a civilised society with a respect for human rights. Most people would say we should take extra care to support young people and those who are disabled. But the brutal truth is that we are failing to protect some of the most vulnerable young people – those with learning disabilities and/or autism. And indeed, we are inflicting terrible suffering on those detained in mental health hospitals and causing anguish to their distraught families. The recent BBC Panorama programme showing taunting and abuse of patients at Whorlton Hall exposed the horrific reality for some.

Too often the pathway to detention is predictable. It begins from before diagnosis. A family grows worried about their child. They raise concerns with the GP, and with the nursery or school. It takes ages before they get an assessment and yet more time passes before they get a diagnosis of autism. All that time they struggle on their own with their worries and without help for their child. This pattern continues throughout childhood as families are under-supported and what little help they have falls away when the child reaches the age of 18.

Then something happens, perhaps something relatively minor such as a house move or a parent falls temporarily ill. This unsettles the young person and the family struggles to cope. Professionals meet to discuss what should happen, but parents are not asked for their views. Then the child is taken away from their home and the familiarity and routine which is so essential to them. They’re taken miles away and placed with strangers. The parents are desperately concerned. Their concerns are treated as hostile and they are treated as a problem. The young person gets worse and endures physical restraint and solitary confinement – which the institution calls “seclusion”.

And the child gets even worse so plans to return home are shelved. The days turn into weeks, then months and in some cases even years.
This is such a grim picture, yet it has been stark in evidence to our inquiry into the detention of young people with learning disabilities and/or autism. We have lost confidence that the system is doing what it says it is doing and the regulator’s method of checking is not working. It has been left to the media, notably the BBC, Sky News and Ian Birrell in the Mail on Sunday, to expose abuse. No-one thinks this is acceptable.
There has been a succession of compelling reports including that from the Children’s Commissioner for England, Anne Longfield OBE.

Our proposals for change are urgent and they are not complicated. They include:
• The establishment of a Number 10 unit, with cabinet level leadership, to urgently drive forward reform to minimise the number of those with learning disabilities and/or autism who are detained and to safeguard their human rights.
• A review to be carried out by the Number 10 unit of the framework for provision of services for those with learning disabilities and/or autism. At a minimum Government should introduce:
– a legal duty on Local Authorities and Clinical Commissioning Groups to ensure the availability of sufficient community-based services.
– a legal duty on Local Authorities and Clinical Commissioning Groups to pool budgets for care services for people with learning disabilities and/or autism.
• Stronger legal entitlements to support for individuals. The Government must act on legislative proposals put forward by the Equality and Human Rights Commission, as well as those made by the Independent Review of the Mental Health Act 1983 and campaign groups.
• Care and Treatment Reviews and Care, Education and Treatment Reviews to be put on a statutory footing.
• The criteria for detention under the Mental Health Act must be narrowed to avoid inappropriate detention. Those with learning disabilities and/or autism must only be detained in situations where:
– treatment is necessary;
– treatment is not available in the community and only available in detention (i.e. the last and only resort);
– treatment is of benefit to the individual and does not worsen their condition; and
– without the treatment, there is a significant risk of harm to the individual or others.
• Families of those with learning disabilities and/or autism must be recognised as human rights defenders, and other than in exceptional circumstances, be fully involved in all relevant discussions and decisions. This should include:
– On every occasion that anyone is restrained or kept in conditions amounting to solitary confinement their families must be automatically
– Young people must not be placed long distances from home as it undermines their right to family life under Article 8 ECHR. Financial
support must be made available to ensure that families are able to visit their loved ones.
• Substantive reform of the Care Quality Commission’s approach and processes is essential. This should include unannounced inspections taking place at weekends and in the late evening, and the use, where appropriate, of covert surveillance methods to better inform inspection judgements.

Our country is prosperous and values human rights. We cannot turn away from the reality of the lives of these young people and their families. It’s time to act.”