This week I have been mostly cheering on families challenging the closure of an NHS short break unit in Hertfordshire, watching with a combination of awe and anger as George Julian live tweeted Richard Handley’s inquest* and feeling sickened and disgusted by the reports of the Safeguarding Adults Review of Mendip House, the former National Autistic Society (NAS) service in Somerset. Not the happiest week. This blog post is about the last of these three horror shows. The NAS position statement is here.
I’ve read lots of the commentary this week at the #MendipHouse hashtag on twitter. The most powerful comment for me was that by Neil Crowther: ‘When Panorama exposed Winterbourne View a human rights expert described the treatment filmed as ‘torture’. The treatment described here in a residential home run by [NAS] is also torture, inhuman and degrading treatment and must be labelled as such.’ Only judges and treaty bodies get to decide that human rights have been breached, but like Neil I struggle to see how the kind of treatment of the residents at Mendip House described in the Safeguarding Adults Review** can be anything other than inhuman and degrading – and thereby prohibited by Article 3 of the European Convention on Human Rights. I also share the concern Neil expressed in a later tweet about the radio silence from the ‘mainstream’ human rights bodies on this issue – feeding the unfortunate impression that violations of disabled people’s rights are not ‘real’ human rights violations.
The only positive contribution I may have to the discussion is to flag section 73 of the Care Act 2014, which makes clear that voluntary and private sector providers of state-funded adult social care are now covered by the Human Rights Act 1998. This means that a resident of a private or voluntary sector care home (or a recipient of domiciliary care) can bring a claim that their human rights are being or have been violated in exactly the same way as if they were in a state-run institution (see below for more on ‘institutions’ in this context). Although the Care Act only applies to adult social care, in my view it is very likely that the courts would now take the same approach in relation to children’s social care and NHS-funded care for both children and adults, in order to avoid unlawful discrimination contrary to Article 14 ECHR. However until this is tested in court the position is unclear. Equally, until the first voluntary or private sector provider is successfully sued using section 73 of the Care Act, I’d imagine this very important extension of disabled people’s rights will continue to be little known and poorly understood.
A number of really important questions seem to me to arise from what happened at Mendip House. The first is whether charities should be running services at all. In my view the only justification for a national charity running services that can only benefit a handful of individuals is that these services act as an exemplar of what can be provided to all. As such my view is that every service run by a charity should have an ‘outstanding’ rating. Charities should sell off services rated only ‘good’ or below to the private sector or non-profit companies; if the service isn’t ‘outstanding’ it can’t be an exemplar. Of course what was going on at Mendip House was about as far from ‘outstanding’ care as it’s possible to get, as the NAS recognised by closing the service.
Secondly, should charities be running these kinds of services? Dr Oliver Lewis of Doughty Street Chambers and Leeds University published a powerful thread on twitter suggesting that ‘institutional’ care breaches Article 19 of the UN Convention on the Rights of Persons with Disabilities on independent living and community inclusion. Oliver linked to the UN Committee’s General Comment on Article 19 from last year, which stated that assessments that disabled people were ‘unable’ to live outside institutional settings were ‘contrary to article 19’ and that independent living means ‘life settings outside institutions of all kinds’. While I would completely sign up to the programme of deinstitutionalisation called for by the UN Committee in its recent concluding observations on the UK, I’m not convinced that this means that there can be no charity-run residential care. Residential care provision can be (although admittedly rarely is) run wholly in keeping with the letter and spirit of Article 19, promoting genuine community inclusion. Equally I agree with Mark Neary that some of what passes for ‘independent living’ in this country is as alienating and segregating as the worst of residential care. What seems to me to be the greatest priority is ensuring that disabled people have ‘choices equal to others’ about where they live, in the language of Article 19. So (1) there ought to be a duty on local authorities to develop the widest possible range of community support services, and (2) local authorities and NHS bodies should be prevented from taking the cost of residential care into account when developing community support packages – precisely as we called for in #LBBill.
Thirdly, what’s the point of the big disability charities? On this one I am in complete agreement with Polly Neate, the chief executive of Shelter, who tweeted the following: ‘I think if local and activist-led groups and larger charities with more capacity join forces around an issue, there’s more potential to achieve change than traditional Westminster/Whitehall public affairs and so-called “insider” influencing’. But the prerequisite for this must be that the big charities have ‘clean hands’ – the least of it being that if things go badly wrong there is a prompt, complete and up-front public apology.
I’ll end on by returning to an earlier theme – that abuse such as that uncovered at Mendip House needs to be part of the mainstream human rights discourse. There are brilliant disabled activists, family members, academics and lawyers speaking more and more publicly about disabled people’s human rights. They need the full support of the major human rights organisations to make sure abuse like this is not framed as merely a ‘safeguarding’ failure but as human rights violations.
*Help fund George’s work here: https://chuffed.org/project/richard-handleys-inquest
**See in particular table 1 on pp5-6 of the report which goes through blow by blow the allegations in relation to individual residents.