Today, 1 November 2019, the 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”.

What is the Joint Committee on Human Rights?  

The Joint Committee on Human Rights consists of twelve members, appointed from both the House of Commons and the House of Lords. Their role is to examine matters relating to human rights within the United Kingdom. The JHRC conducted an inquiry on the detention of young people with learning disabilities and/or autism. After hearing evidence the Committee published this report of findings and recommendations.

Why did the inquiry take place?

As a result of evidence arising from its inquiry into youth detention: solitary confinement and restraint, it was clear to the Committee that that the detention of young people with learning disabilities and/or autism threatens their rights to private and family life (Article 8), their right to freedom from inhuman and degrading treatment (Article 3) and their right to liberty and security (Article 5). Sadly in some cases young people's right to life (Article 2) is threatened. 

Therefore, the Committee decided to take evidence on the inappropriate detention of children and young people with learning disabilities and/or autism in mental health hospitals and the threat that such placements pose to their human rights. During the inquiry,  the treatment of people with learning disabilities and/or autism hit the headlines after the Panorama expose on Whorlton Hall hospital.

What issues does the report look at?

The inquiry focused on younger people with learning disabilities and/or autism who are detained in Assessment and Treatment Units (ATUs). These are specialist units which are often situated within larger mental health hospitals. Although the report focuses on younger people it recognises that there are many older adults in similar situations, some of whom are now detained because of failures to provide adequate support for them when they were younger.

What does the report say about the detention of young people with learning disabilities and/or autism?

The report finds that the human rights of many of those with a learning disability and/ or autism are being breached in mental health hospitals. The detention of individuals in the absence of individualised, therapeutic treatment risks violating an individual’s right to liberty and security. In some cases, detention may even reach the threshold of degrading treatment.

The report finds that too often the pathway to detention is predictable. First families raise concerns with a GP, then there is the struggle for an assessment and diagnnosis. During this time the young person's condition worsens, their under-supported family struggled to cope and the young person is then taken away, often miles from their families. The young person gets worse and endures physical restraint and solitary confinement - which the institution calls “seclusion”. Due to this the young person gets even worse so plans to return home are shelved. The days then turn into weeks, then months and in some cases even years.

Eight years ago, after a BBC Panorama documentary exposed the horrific abuse of patients in an assessment and treatment unit (ATU) at Winterbourne View Hospital, the Government introduced its Transforming Care programme. This programme promised to shift more care for people with learning disabilities into community settings and close down significant numbers of ATUs and other inpatient provision. However, in July 2019, 2,270 people remained in institutions, a net reduction of just 125 people over the lifetime of Transforming Care. In March 2019, the last phase of the Transforming Care programme officially came to an end. Following on from this the NHS Long Term plan, published in January 2019, set a revised target for reducing the number of those with learning disabilities and/or autism in inpatient units.The report states that the biggest barrier to progress was a “lack of political focus and accountability”. 

The JCHR report states that they have “no confidence that the target to reduce the numbers of people with learning disabilities and/or autism in mental health hospitals, set out in the NHS Long Term plan, will be met”.  The report also states that the detention of those with learning disabilities and/or autism is often inappropriate, causing suffering and long term damage.

The report finds that the right housing, social care and health services needed to prevent people being detained inappropriately are not being commissioned at local level. In addition, too often families of young people, who may be desperately trying advocate on behalf of their children are considered to be the problem, when they can and should to be the solution.

The report also states that the Committee has “lost confidence that the system is doing what it says it is doing and the regulator’s method of checking is not working”. Regarding the Care Quality Commission the report states that “a regulator which gets it wrong is worse than no regulator at all”

What recommendations does the report make? 

  • The report calls for 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. This unit should carry out a review of the framework for provision of services for those with learning disabilities and/or autism.
  • There should be changes to the law to create of legal duties on Clinical Commission Groups and local authorities to ensure the right services are available in the community and narrow the Mental Health Act criteria to avoid inappropriate detention.
  • 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. 
  • The report also states that a 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.


What happens now?

The Committee is now awaiting the government's response to the report. According to a spokeswoman the Department of Health and Social Care is currently consider these recommendations carefully and will respond to them in due course.

Where can I find more information?

The rights of young people with learning disabilities and/or autism is centeral to our work here at BIHR. Human Rights should be the framework for all decision making. They are too often only discussed when addressing failures in services, but human rights based decision making means that better quality decision making happens from the outset. 

Below are some links to our previous blog posts and resources that you may find useful.


Do you #KnowYourHumanRights?

Our new online advocacy tool supports people to know when their human rights may be at risk in mental health and mental capacity services, and how to use the law to resolve these issues in everyday discussions with staff.

 

 You can access the tool here.