Charli is a member of the RITES Committee and a Lived Experience Expert for BIHR as an autistic and neurodivergent person who was admitted to Inpatient CAMHS (Children's Mental Health Services) aged 15. They advocate for human rights and system change in health & social care in roles across the NHS and third sector, and elsewhere, they are a writer, speaker, and trainer.
Please note, this is a guest blog and views expressed in this blog do not necessarily reflect the views of BIHR.
The Supreme Court ruling overturning Cheshire West is extremely concerning. Several charities have described it as the ‘biggest rollback of disability rights in a generation’ - from a human rights perspective, it has to be seen as problematic and dangerous to our communities. To me, it appears to severely misunderstand the realities of what changes and impacts a person’s right to liberty when they are under the state.
This is now a landmark moment for disabled, neurodivergent and Mad people, and alarm has to be raised. The nature of this ruling means there is no route to appeal the decision, and there was no public debate - the Department of Health and Social Care must release interim guidance and a route to legislating.
It is hard, from a lived experience view, to not view this to an extent in a cynical nature: the pressure on the Deprivation of Liberty Safeguards system has long been overwhelming, and this will cause that to drop significantly. It is very difficult to not see this as intentional. A reduction in pressure on the system should never be the focus over people’s needs and safety. The Human Rights Act is clear that staffing, resources, or money are rarely legitimate reasons to restrict a human right.
Much of the Human Rights Act hinges on decisions being within the law, with a legitimate reason, and proportionally having the least impact: a DoLS authorisation means someone’s liberty does need to be restricted, but puts these safeguarding scaffolds in place to make sure this is consistently measured as their best interest, and done without abuse or neglect.
The ruling in part discusses focusing on more factors than the current ‘acid test’ does, which can in theory sound positive. Normally, I welcome more issues being considered when it comes to human rights needs, as so often, some issues slip through the net or are not deemed worthy. In this case, though, this is not the case. It has to be questioned as to whether liberty is something which can be debated. The Cheshire West acid test puts the need for safeguards in the minute that someone is subject to continuous supervision and control, and they are not free to leave - if this is happening but someone is okay with that, does it mean they should not be safeguarded?
This ruling says that if a person appears happy with their situation, this is not a deprivation of liberty as this gives consent. Though every disabled person is different, many can be more vulnerable to being persuaded, seeing abuse or neglect as normal, or to being institutionalised (where the practices of a facility such as psychiatric ward or care home become normalised, and where it can feel extremely difficult to leave or push back against such structures).
When institutionalised or simply under the system, it can feel extremely easy to say that you are okay with what is happening or what is being suggested; this can be because it feels safer to do so, or because you simply do not know that something different is available or that something is wrong. We are not often not taught or told about our rights in these settings, and advocacy is often lacking (whether it be due to funding, availability, or being unaware of the right to it). For me, self advocacy became a survival tactic I learnt on the spot - not something I was taught or supported with. To write into law that one can give this sort of consent simply through appearing happy or even just being passive is extremely dangerous.
In the case that someone does appear to be genuinely happy with their situation under this test, it has to be argued that this still does not pull away the need for safeguards. Abuse and neglect happens at concerning rates in health and social care settings in the UK, and learnings from cases like Winterbourne View have never truly manifested in reality. If someone is not free to leave a setting and is under continuous surveillance or lacking allowance for decision making, this puts them in an extremely vulnerable position.
I am in agreement with organisations like the National Survivor User Network who see this as symptomatic of the rights rollback that disabled people are facing across many areas at present. The fact that this was done at Supreme Court level means a complete lack of debate or scrutiny over this decision which must be seen as severely concerning. The UK Government must work with charities, organisations and individuals to consider the reality of the impact of this and put proper guidance in place prior to legislating, which must consider our rights fully.
Questions must also be raised in relation to how this decision interacts with the new Mental Health Act. Thousands of autistic people and people with a learning disability are about to not be allowed to be detained, and will, in theory, be placed into community settings. Whilst this can be seen as positive, there are fundamental issues with it surrounding where funding and placement is actually coming from - and without the DoLS framework, it has to be wondered how many people will be supported, safeguarded and protected from abuse or neglect when they are moved.
DoLS has never been perfect. In my work, I have had my fair share of disagreement with cases in which it has felt like it is being used to the benefit of the system in place of supporting people into better environments or situations. Similarly, I have sat in many Care and Treatment Reviews where a person is stuck in a more restrictive environment due to waiting so long for DoLS due to the high demand. But, to pull away such a fundamental piece of safeguarding is to open the door for higher levels of neglect and abuse behind closed doors, and allow for people to be kept in settings or scenarios which are unjustified or are far from in someone’s best interests.
This is a huge moment for which route is taken next: a new system could embed human rights more thoroughly, consider how often we restrict people’s right to liberty and consider how disabled, neurodivergent and Mad people can be genuinely supported. Currently, however, this seems unlikely - and in real time, thousands of people’s safeguard has just been pulled out from under them.