Scandal: Detention of People with Autism & Learning Disabilities

by Caroline Hopton & Inder Johar

Scandal: Detention of People with Autism & Learning Disabilities

by Caroline Hopton & Inder Johar
Caroline Hopton & Inder Johar
Case Owner
To stop the detention of autistic/learning disabled people, we want to change the law & remove autism and learning disability from the definition of ‘mental disorder’ under the Mental Health Act 1983.
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Caroline Hopton & Inder Johar
Case Owner
To stop the detention of autistic/learning disabled people, we want to change the law & remove autism and learning disability from the definition of ‘mental disorder’ under the Mental Health Act 1983.
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Latest: Oct. 30, 2019

Letter Before Claim Sent!

Dear Valued Supporters

On 28 October 2018 we sent a “letter before claim” to the Secretary of State for Justice. The letter sets out the factual and legal basis on which we argue that the …

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The detention of autistic and learning disabled people under the Mental Health Act, in mental health hospitals, also known as ATUs (Assessment and Treatment Units), is a national scandal.  

The Government has already accepted that these facilities are completely inappropriate for people with autism and learning disabilities, who do not have a treatable mental health condition, and promised to fix the problem.  However, the reality is, as the latest data suggests, increasing numbers of autistic and LD people are subject to detention. 

This cannot and must not be ignored. 

We need your help to raise funds to investigate whether there are grounds to bring a legal challenge to this hugely important issue which affects thousands of families across the UK.

The Government's response on 30/11/18 to a current petition on this issue, signed by over 45,000 supporters, is as follows:

"We agree that people with autism and learning disabilities should not be inappropriately detained in mental health hospitals. The CQC will review the use of long-term segregation and seclusion"  

Autistic and/or learning disabled people can display unusual behaviour. Sometimes this behaviour can challenge but there is usually a reason behind this.  It may be a response to being unable to effectively communicate their needs, to pain, neglect, abuse or uncertainty of how to cope with certain situations. They need help and support in the right environments with people who understand their condition and who know them, not detention in mental health institutions, a practice which is currently defined as 'appropriate' under the Mental Health Act. 

Not only are autistic and learning disabled people being detained but they are also being unreasonably secluded, restrained and over-medicated due to a lack of understanding of their condition.

Their behaviour can deteriorate further in ATU's, an environment which only exacerbates their fear and anxiety and where there is little or no appropriate support. There continue to be numerous stories published of deaths, abuse and neglect of vulnerable autistic and learning disabled people, many of whom are unable to speak or express themselves. The emotional and physical trauma endured by those detained and that of their families, who are most often powerless to help them, is insurmountable. 

Autism and learning disability are not mental health conditions and it is inappropriate for autism and learning disability to be included in the definition in this way. Under the current law, autistic and/or learning disabled people can be detained in a mental health hospital, even if they don’t have an accompanying mental health diagnosis and this can also happen simply as a result of there not being enough community-based provision to meet autistic people’s needs in times of crisis. It often means that people are held inappropriately for years on end without any plan for release. This is not good enough. We should not be allowing people’s human right to liberty to be overridden because of a lack of services. We believe this is discriminatory and has to change. The removal of autism and learning disability from the definition of ‘mental disorder’ must also go hand in hand with making sure there are the right community-based services for autistic and learning disabled people.

Caroline's story:

I am a single mother of two autistic sons, for whom I have advocated all of their lives.  I wholly adore my sons and, like so many other parents, I live in fear of what will happen to them when I die.

My younger son Oliver, 19, has autism and learning disabilities; he does not have an accompanying mental health condition. Oliver, who is minimally-verbal, suffered maltreatment in two consecutive residential care facilities.  He was safeguarded and returned home to live with his brother and I in 2017. There is an upcoming Crown Court trial with regard to his maltreatment.

Since Oliver returned home, he has changed beyond recognition. He is happy and flourishing and the anxiety-led behaviors of the past have virtually disappeared. He enjoys a wide variety of community based activities and is thriving in a day college placement.  He is now progressing in every aspect of his life.  His teachers describe how he 'lights up the room' with his happy and infectious personality. The challenging behaviour that Oliver once displayed has virtually become a thing of the past. I know now that his challenges were a reaction to a lack of support and neglect of his needs during his time in residential facilities and that he felt threatened and afraid. I feel as though I have my son back, not just in person but in spirit.    

Inder's story:

My son, Anmol, is 24 years old and although he is physically fit and strong, Anmol has autism and challenging behaviour with significant learning disabilities.  Anmol is non-verbal.  Although he is a young adult, Anmol has the mental capacity of a child and is therefore finds it difficult to make decisions on how to live his life.  Despite his many challenges, Anmol is a happy, fun-loving, cheeky and charismatic young man and brings a lot of joy into our family’s life.

Until the age of 19, Anmol was in a full time autism specific school but his last year was increasingly difficult as Anmol craved an environment where he had the freedom to make choices.  He was displaying extremely challenging behaviours on a daily basis which resulted in him being held on ground holds and it was in the final three months of school that we decided to take Anmol out and keep him at home.  

This was the best decision we made for Anmol and ourselves.  We empowered (and constantly encourage) Anmol to make his own decisions, no matter how mundane his choice may seem to us (as long as his choices are legal, not ridiculously dangerous and he can afford it), we support him in these choices.  Anmol’s challenging behaviours decreased and he was back to the happy, fun-loving young man that we know and love.

Anmol lives at home full-time and is cared for by his parents and a team of carers.  We work very hard to ensure that Anmol has a full life and enjoys a wide variety of activities.  Anmol's mother and I are advocates for him and provide a voice for him in all matters affecting his care and wellbeing.

Anmol needs 24 hours a day, 2:1 care provided by trained support workers who have intimate knowledge of Anmol’s needs and behavioural challenges, to keep him safe and well and help him develop his range of self-help and communication skills and range of leisure activities.

If we were no longer in Anmol’s life (for whatever reason) and his support broke down or failed through no fault of his, he would become a target to be detained (under the Mental Health Act 1983) simply because he has a diagnosis of autism.

Please support us to change the law to stop people with autism and/or learning disabilities from being at risk of detention under the Mental Health Act. Success of this campaign will potentially help thousands of vulnerable people and their families across the country.

Thank you.

Caroline and Inder

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Update 3

Caroline Hopton & Inder Johar

Oct. 30, 2019

Letter Before Claim Sent!

Dear Valued Supporters

On 28 October 2018 we sent a “letter before claim” to the Secretary of State for Justice. The letter sets out the factual and legal basis on which we argue that the Secretary of State is failing to discharge his legal duties, by failing to exclude learning disability and autism from the definition of "mental disorder" for purposes of section 3 of the Mental Health Act. Section 3 is the section which allows for a person with a mental disorder to be admitted to hospital for treatment.

We are arguing that the Act discriminates against people with learning disability and autism. Specifically, we argue that the Act is incompatible with Article 14 of the European Convention on Human Rights (“ECHR”), in conjunction with Articles 5 and 8 of the ECHR.

•       Article 14 requires that all of the rights and freedoms set out in the Act must be protected and applied without discrimination

•       Article 5 of the ECHR provides that no-one shall be deprived of their liberty save in specific cases and in accordance with a procedure prescribed by law

•       Article 8 of the ECHR provides that everyone has the right to respect for his private and family life, his home and his correspondence and that there shall be no interference by a public authority with the exercise of this right except such as it is in accordance with the law and is necessary in a democratic society

We argue that the current wording of the Act means that it is possible in principle for a person to be deprived of their liberty, and then to be subject to compulsory treatment, on the clinical basis that they have a learning disability or autism.  We argue that those with learning disability or autism are in a relevantly different situation to others with a diagnosed “mental disorder” falling within the scope of the Act because:

•       Learning disability and autism are not mental health conditions, affording of mental health treatment. Rather, they are impairments requiring support;

•       The ‘treatment’ on offer for mental health conditions does not represent support for these impairments. Psychotropic drugs are known not to alleviate the effects of the impairments, but to actively worsen them. The very fact of being within an in-patient psychiatric hospital setting can serve to exacerbate distress and the effects of the impairment;

•       A person with learning disability or autism detained under s.3 of the Act is likely to remain detained for a longer period of time than a person detained on other grounds.

We have requested a response to our letter within 14 days, which is the standard timeframe set for a response by the legal protocol for this correspondence. We will provide a further update at that stage.

Warmest wishes

Caroline and Inder

Update 2

Caroline Hopton & Inder Johar

Sept. 3, 2019

Quick Update!

Dear Valued Supporters

We are aware that we've been quiet for a while but please rest assured we are working hard in the background on this hugely important case and have a key meeting lined up in mid-September to consider the complex issues and legal options open to us.  Please bear with us and we will be in touch again very soon.

Thank you all SO much for your kind support and generous donations; we could not have got this far without you.

Very best wishes

Caroline and Inder

Update 1

Caroline Hopton & Inder Johar

June 11, 2019

Update; we've instructed a barrister!

Thank you SO much to all who have donated to the campaign to date. The funds we have raised so far, will allow our solicitors to instruct Steve Broach, a barrister at Monckton Chambers who specialises in disability rights:

Steve will advise whether we have grounds to challenge the inclusion of autism and learning disability under the definition of mental disorder in the Code of Practice to the Mental Health Act. If there are grounds to do so, the next step will be for our solicitors to write to the government in accordance with the pre-action protocol for judicial review, setting out our proposed grounds of challenge. 

We will keep you updated via this page and thank you once again for your support. Please continue to share this hugely important campaign with friends, family and colleagues.

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