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Failure by the NHS to adhere to the United Nations Convention on the Rights of Persons with Disabilities

This article was written by an anonymous guest author

This post references:

UN Special Rapporteur on Torture

UN Convention on the Rights of People with Disabilities

UK Mental Health Act (1983)

We are at a pivotal crossroads on our path towards a fairer society, faced with a monumental issue that, while hidden, carries unsettling implications.

The UK’s National Health Service (NHS) has repeatedly been implicated in serious violations of human rights, as outlined by the United Nations conventions on the rights of disabled persons. This is not merely an affront to international law; it’s a harsh, terrifying reflection of the suffering inflicted on people with disabilities under the pretext of health care provision.

The UK Government’s ratification of the UN Convention in 2008 was a potent commitment to protect disabled people’s rights, obligating domestic legislation to align with its principles. However, as we traverse through 2023, it’s distressingly apparent that the NHS has systematically breached this social contract, casually discarding the rights of the disabled.

The NHS’s Mental Health Act 1983 blatantly contravenes the UN Convention, notably:

• Article 12, Equal Recognition Before the Law: This Act permits restriction of legal capacity based on mental health status, infringing upon personal autonomy and decision-making rights.

• Article 14, Liberty and Security of the Person: This Act shockingly allows involuntary detention and treatment of people with mental health conditions based on their disability, violating their right to liberty and security.

• Article 15, Freedom from Torture or Cruel, Inhuman, or Degrading Treatment or Punishment: This Act neglects to shield individuals from non-consensual treatments such as electroconvulsive therapy and psychosurgery, which could amount to torture or inhumane treatment.

These issues have persisted for years. In 2013, the UN Special Rapporteur on Torture called for an outright ban on these reprehensible practices.

Regrettably, the proposed Mental Health Act reforms lack the depth needed to align the NHS fully with the United Nations Convention. A fragmented approach is grossly insufficient in addressing these grave infractions.

The field of psychiatry has largely remained reticent on this matter, often keeping these concerns concealed. The victims, who are often society’s most vulnerable, have their stories systematically suppressed.

Alarmingly, our media has mostly remained mute, a tacit accomplice to these profound human rights violations. The much-needed transparency is missing, replaced by a stifling silence that only magnifies the problem.

We must break this silence with knowledge, empathy, and decisive action. Disseminate this information broadly. Challenge the apathy that perpetuates these horrors.

We must unite and place collective pressure on the NHS to uphold its duty to protect the rights of disabled persons. The time for change is now. Let us stand together and navigate our society towards a future where health care is genuinely fair, and human rights are unreservedly respected.

How many Autistic people are in inpatient units in the UK?

When we consider the world of inpatient psychiatric care, we often think about types of neurodiversity like schizophrenia and bipolar. While it is true that these individuals represent a considerable number of admissions, there is a darker side to admission to hospital. Detainment and admission is not solely the realm of traditional psychiatric “conditions”; Autistic people are being locked away for months or even years.

This issue has become so prevalent that the government has had to commission inquiries and reports into the matter. Still, there are a disturbing number of Autistic people locked away in these institutions.

According to the National Autistic Society, as of January 2022 there were 1,185 Autistic people held within the inpatient psychiatric system. Of this, around 1 in 7 (165) were under 18 years of age. It’s not just Autistic adults being detained, it’s our children too. This represents a stark departure from the so-called schemes of “care in the community” that promised to empty asylums and create a community culture of caring for our most vulnerable.

Instead what has happened is the systematic incarceration of Autistic adults and young people for no other reason than not having the correct services in place to support them in their independence. This becomes even more concerning when you consider the current rate at which care home and inpatient units are experiencing scandals around the mistreatment and abuse of those they are supposed to care for.

Autistic people are being abused daily in these settings, despite evidence to suggest that inpatient units are inappropriate settings for Autistic people. What we are seeing is the systematic practice of locking away people because our society is unwilling and unable to give them meaningful support at home. To my mind this is against the Mental Capacity Act (2005), in particular principles 4 and 5 of the Code of Practice:

“An act done, or decision made, under this Act for or
on behalf of a person who lacks capacity must be done, or made, in his best interests”

Principle 4, Mental Capacity Act Code of Practice

“Before the act is done, or the decision is made,
regard must be had to whether the purpose for which it is
needed can be as effectively achieved in a way that is less
restrictive of the person’s rights and freedom of action.”

Principle 5, Mental Capacity Act Code of Practice

Given that inpatient treatment does not improve outcomes for purely being Autistic, there is a significant and unresolved risk of abuse, and the overt removal of a person’s freedom, I would argue that both principles 4 and 5 have been failed. One might argue that the Mental Health Act (1983) should take precedence which allows for the detention of people who are at risk to themselves or others.

First I would bring your attention to this section of the Code of Practice:

“The MCA should be central to the approach professionals take to patients who lack
capacity in all health and care settings (including psychiatric and general hospitals).
The starting point should always be that the MCA should be applied wherever
possible to individuals who lack capacity and are detained under the Act.”

Section 13.11, Mental Health Act Code of Practice

We have to consider what is being classed as risk, and whether the deprivation of a person’s liberty is necessary. I posit that in most cases, Autistic people remain in inpatient settings because services have no resources to appropriately address their dysregulation in the community.

An Autistic person’s freedom should not be decided by government funding.

To boot, the prinicples of the act itself state that professionals should use the:

“Least restrictive option and maximising independence”

SWLSTG NHS Trust

In what world is indefinite detention in an institution the least restrictive option? Since when does detention be decided by community resources? This is a dangerous precedent to set, it opens up the entire neurodivergent community to facing detention.

When we consider the Royal College of Psychiatrists disturbing statistic that Autistic people are nine times more likely to die by suicide, and combine that with the fact that according to The Nuffield Trust there were 1,357 suicdes in 2019 amongst people who had been in contact with mental health services. Something is going very wrong, and I suspect that, in part, it is the number of Autistic people being detained wrongfully under The Mental Health Act.

It is clear that this situation is out of control. Autistic people should be supported to freely live their lives, not spend years locked in seclusion rooms suffering chemical and physical restraint as a daily practice. Sadly, until such time that our government supplies appropriate funding and resources to services, we are going to continue to witness the systemic mistreatment and killing of Autistic people.

We are Autistic, not monsters to be hidden away from society.

Make sure you check out the CAMHS crisis resource page.

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Children are being seriously injured for displaying “challenging behaviour”

All statistics mentioned in this article are taken from The ICARS Report into the use of restrictive practice in England, information take from The Equality and Human Rights Commission, Human Rights as detailed by the United Nations, and The Royal College of Psychiatrists.

There is a growing belief in the world that the use of corporal punishment, ranging from smacking a child through to more archaic forms of punishment, are unacceptable. While this is a good thing, to me it shines a light on the hypocrisy that is currently at play.

While remaining a global phenomenon, restrictive practice is still widely used, and in particular it can be found in specialist settings where people work with disabled students who more likely than not have experienced a great deal of trauma. Autistic people in particular are likely to be traumatised, this is because of the way that the world is designed. There are myriad ways that the world does harm to us.

This becomes deeply problematic when we consider the way that restrictive practice takes place. While used as an intervention for perceived “challenging behaviour”, it would be more accurate to view restrictive practice as an intensive intervention for dysregulation.

Allow me to take a step back and consider the nature of such practice. Restraint is the use of techniques that restrict a person’s ability to act freely. Often when we consider such techniques, we imagine people being held to the floor, but we can see not just the use of mechanical restraints, but also chemical restraints in healthcare settings. Such restraints are employed by the use of drugs that inhibit a person’s ability to act freely.

As you can see from the off set, restrictive practice represents a significant issue in the human rights and ethics of working with disabled people. The hypocrisy lies with the people who speak out against corporal punishments while employing the use of restraint. While such practices are supposed to be “last resort”, 78% of those included in the ICARS report reported that their child had been a victim of restraint prior to the age of 10 years old.

Another concerning statistic is the number of children who were harmed by restraint. The ICARS report found that 97% of respondents were harmed, while restraint was only recorded 59% of the time (breakdown of statistics below). My interpretation of this data is that restraint is being performed dangerously, in a punitive context, and improperly recorded.

Taken from The ICARS Report into the use of restraint in English schools

The implication of children experiencing punitive restraint flies in the face of a society that is trying to move away from corporal punishment. Such brazen abuse of the position of trust and power that schools are privileged to have is simply unacceptable. Children have died and been significantly traumatised by restraint. This is, quite simply, not a practice that should be occurring in this day and age.

We must also consider the fact that restrictive practice feeds into a self-perpetuating loop, in which the child is constantly being exposed and re-exposed to the trauma of restraint. Dysregulation creates challenges, which are approached with restraint, causing trauma that once again results in dysregulation. It is a self-fulfilling prophecy of sorts that is fueled by societies pervasive desire to assimilate children’s behaviour into an “acceptable” standard.

According to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), the UK has made a commitment to create an inclusive education environment and protect disabled people from all forms of violence and abuse. I would challenge our governments commitment to this convention on the grounds that the punitive and improper use of restraint is a direct violation of both of these commitments.

According to a report made in 2018 for the UNCRPD, 75% of Autistic students, and 70% of those with a physical disability reported bullying in school, compared with 50% of those with no disability. How can we reduce interpersonal bullying among students peers in an environment where adults are actively harming children with restrictive practice? We have, in effect, normalised the mistreatment of disabled children on the grounds that disabled embodiment is a challenge to be intervened on rather than addressing issues with the wider environment that are creating traumatised and dysregulated children.

The Universal Human Rights Index specifically mentions concerns over the UK’s use of restraint on children, stating;

The Committee is concerned that the State party is still using techniques of restraint that aim to inflict deliberate pain on children in young offender institutions, including to maintain good order and discipline

UHRI (Accessed May 3rd, 2023)

This indicates that the UK government is failing in it’s duty to prevent torture and ill-treatment of it’s citizens. This raises further questions about the fact that this failure specifically pertains to disabled children, a notably marginalised group in our current society.

The truth of the matter is that children’s lives are being endangered, if not by the restraint itself, then quite possibly due to it’s correlation with the 9x increase in suicide risk seen amongst Autistic people (RCPSYCH, 2018) and the significant over-representation of Autistic people in demographics that have been victims of restraint.

Disabled people deserve compassion and equal access to the world. All of the time that we are holding the threat of dangerous restrictive practice over their heads, this has not been achieved. we need to create a world in which disabled people thrive, are not met with the threat of pain and violence. Restrictive practice needs to be seen for the toruturous practice that it is, and not normalised as a means of forcing the behaviour that institutions arbitrarily believe is acceptable.

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Restraint and Seclusion in England’s Schools

The International Coalition Against Restraint and Seclusion have just published their report into the use of restraint and seclusion in English schools and the results are terrifying. With Autistic children being the most likely to be the victims of inappropriate restrictive practice, it is clear that normative violence is taking far more overt forms than the micro-aggressions we are used to. For this reason, I am going to explore the findings of the report, using screen shots taken directly from the summary deck.

You can access the full ICARS report by clicking here.

What is restraint?

Ask this question to the layperson and you will receive different takes depending on the person’s career and privilege. I however feel it’s necessary to highlight the definition within the report, which itself is quoted from the Equality & Human Rights Commission 2019.

So, restraint is an act carried out with the purpose of restricting and individual’s movement, liberty and/or freedom to act independently.

This can be done in a number of ways. Most common is the use of holds and mechanical restraints that physically restrict movement of the body. One can also be chemically restrained. Most common in hospital inpatient settings, this involves administering sedative and/or tranquiliser drugs with the purpose of subduing a person into a state where they can no longer exhibit the behaviour that is being modified.

That is what restraint is. It is behaviour modification through the use of force. Where the more insidious behavioural interventions are not successful, the use of restraint gives a person no choice but to comply in order to have some semblance of liberty. Something I find most concerning is that legislation such as The Mental Health Act (1983) and The Mental Capacity Act (2005) incorporate the use of “least restrictive options” in their code of practice, and yet in the schools of England, children are being exposed to unnecessary and traumatic uses of physical restraint that are far from being “the last resort”.

Statistics found by the report

This report had a sample size of 560 respondents. The following are the statistics arising from the experiences of the participants.

  • 81% of those experiencing restraint were Autistic
  • 34% were ADHD
  • 17% had a diagnoses of Sensory Processing Disorder
  • 15% had anxiety
  • 13% were PDA
  • 13% had a Specific Learning Difficulty
  • 47% of children were psychologically harmed by the use of restrictive practice.
  • 43% were physically and psychologically harmed.
  • 5% were physically harmed
  • 2% of respondents disclosed harm of an unknown nature
  • 3% did not note any harm

This means that of the respondents, 81% of children experiencing restraint were Autistic, and 97% of them experienced some kind of harm. This begins to raise questions around why Autistic people are over-represented in this sample, and why we feel it is okay to expose them to harm without good monitoring or reason.

On the topic of whether or not restraint was necessary in its use, we have the following statistics.

  • 3% of respondents said that restraint was necessary
  • 86% Said it was not necessary
  • 8% were unsure if it was necessary
  • 3% said it was sometimes necessary

Again, 97% of cases of restraint did not have a clear rationale or were a situation where restraint was not always necessary. 97% of the time, the hugely over-represented Autistic students were being exposed to restraint that could have been handled differently.

Restraint has a tendency of occurring in situations of dysregulation. The primary factor in Autistic dysregulation is an environment that does not meet the needs of the Autistic person. In the context of Children and Young People, this is very often a school environment that is under-resourced within it’s own SEN provision. In support of this, I give you this data from the ICARS report.

  • 2% of respondents said that, Yes, their child’s needs were being met.
  • 91% said that there child’s needs were not being met.
  • 6% said their child’s needs were somewhat being met.

This means that in 98% of cases, the needs of the child were not being met appropriately enough for the parent/carer to give a solid “Yes” as a response. Where we have unmet needs, we have dysregulation, which in turn raises the risk of restrictive practices being used. Rather than adjust the environment to the child, the child is being forcibly coerced into “appropriate behaviour” through the deprivation of their physical liberty.

Where restraint is used on a child, caregivers should always be informed. This leads me onto the last couple of statistics I will share, these are perhaps the most troubling statistics in my opinion.

  • 52% of respondents had not been notified about the use of restraint on their child.
  • 20% were sometimes notified.
  • 28% were notified.

72% of the time, schools could not be trusted to accurately report the use of restraint on children. This represents significant issues in accountability for schools and the scrutiny that they may face if all uses of restraint were made known to caregivers.

So perhaps you are wondering why parents don’t just withhold permission for the use of restraint?

6.3% of respondents were told that if they did not give permission, their child would not be afforded a place at the school. This is in direct conflict with a child’s right to education, and highlights a belief among staff that restraint is a necessary weapon of forced compliance.

Commentary

This statistics are horrifying. They represent a discourse around Autistic and learning disabled children that implies a lack of humanity, and the use of physical restraint to coerce them into normative standards of behaviour. I myself have written about neuroqueering education, and this report highlights to me the distinct importance of decentering normative values, and instead placing the rights of children centre place.

Children deserve space to work through difficult feelings and dysregulation without the fear of coming to physical harm. As you will see in the report, some of the restraint used has restricted children’s breathing and caused significant psychological harm. I am very much of the opinion the the use of restraint outside of preventing serious injury or death is child abuse. If it would be illegal to do it to an adult or romantic partner, then why is it okay to do to a child?

Children do not exist to serve pre-existing power structures and institutions. None of us were born to be boxed into idea’s of normality and acceptability. While I recognise that dysregulation can lead to a significant risk of harm, restraint needs to truly be a last resort. Where restraint has to be used, it needs to be documented in a way that allows for public scrutiny.

If having your use of restraint on public display makes you worry that people will not send their children to your school, the issue is not the child, it is the culture you have developed as an educational institute.

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