The Great Disdain

I’ve been trying to digest the welter of reports dropping about autistic children and children with learning disabilities being incarcerated, autistic adults and adults with learning disabilities being put into solitary confinement, and people with learning disabilities being denied a quarter century of life compared to other people. These have all been rushed out in advance of a BBC Panorama programme due to air tomorrow, presumably to share out the outrage between them and get their media lines sorted. I’ve done a lot of blogposts going through the details of these kinds of reports before, and there will be some of that in this typically over-long post, but through these repeated cycles of reports, media frenzy, ‘lessons learned’ and ‘action plans’ (not to mention the blogposts I write) I’ve come to a sense of pointlessness about what these are achieving.

Without wanting to get overly Wolfensberger about this, I can’t help feeling that we’re at a point where those in a position to champion the human rights and flourishing of people with learning disabilities and autistic people to the benefit of society as a whole fundamentally wish that people with learning disabilities and autistic people just didn’t exist. This isn’t the same as saying I think those people wish people with learning disabilities and autistic people were dead, it’s just that people with learning disabilities and autistic people are not thought of at all, made invisible, and vaguely thought of as burdens and obstructive to the ways that politicians and others want society to run (unless they can be turned into exploitable commodities for profit). When the human consequences and end-points of this disdain become visible, through concerted and exhausting efforts on the part of people, families and the media, there is an almost visible shrugging of the shoulders and exasperated side-eyeing in responses to ‘fix’ the ‘problem’. I’m now seeing this all over the place (might just be my less than rose-tinted glasses though):

·        Introduce pre-natal screening for Down syndrome.

·        Design an entire school system modelled on a minor 1950s public school, forget completely about disabled children, then idly wonder why these children are excluded and off-rolled from mainstream schools and having an increasingly rough time.

·        Talk about social care for adults exclusively in terms of older people – if mentioning younger adults with learning disabilities or autistic younger adults always mention the huge proportion of social care spending going on these groups of people and the increasing ‘burden’ on local authorities they represent. At the same time, ensure that the number of adults with learning disabilities and autistic adults getting adult social care does not keep pace with the number of people who might need social care.

·        Decide not to have a comprehensive national policy or strategy about supporting people with learning disabilities, and disband advisory groups of people with learning disabilities and family members.

·        Have a punitive benefits system that enforces people with learning disabilities and autistic people into a perpetual cycle of ‘looking for work’ activities, while ignoring cost-effective ways of supporting people into and maintaining actual paid employment.

·        Degrade ways of supporting people that would encourage people’s lives to flourish.

·        Ignore international conventions that the UK has signed and ratified (e.g. the UN Convention on the Rights of Persons with Disabilities), and contemptuously fend off UN monitoring of how the UK is doing with respect to the rights of disabled people.

·        Have health services that frequently discriminate against people with learning disabilities and autistic people, sometimes breaking the law to do so.

Look at the consequences of all this disdain – people being denied a quarter century of life compared to other people, people not being educated to equip them for a flourishing life, people on antipsychotic medication and incarcerated, sometimes from an early age, much less of a chance for living, loving and party-going. And (after delay and obfuscation), come up with woeful ‘fixes’ to deal with the ‘problem’, rather than stopping to consider the underlying reasons why people can end up in the situations they do. All these reviews, reports and activities (including ones announced today by the CQC, the Department of Health and Social Care and NHS England/NHS Improvement) increasingly seem to me part of a cycle of protracted fending off. Just get through the next news cycle and it will all die down.

Minimise

Even when charged with making the situation of people with learning disabilities and autistic people visible, the ways that organisations do this show the traces of this urge to invisibility, this fending off of the reality of people’s lives and deaths. Some examples:

As with previous reports (Mazars, last year’s Leder report), both the CQC and NHS England moved the publication dates of the CQC and Leder reports (in this case moved forward) to minimise the attention that people would pay to them – previously both organisations (and a government minister) had said that the reports couldn’t be published now because of, variously, elections coming up or the need for ‘scrutiny’.

Both the Children’s Commissioner and CQC reports talk extensively about people’s “vulnerability” and “complex needs”, as if these are fixed properties of individual people that in part have caused their incarceration (services and professionals are at a loss as to how to deal with such complexity…). Vulnerability is a function of a threatening environment, and complex needs are a statement of a lack of understanding.

There is across these reports both a fetishisation of numbers to construct “the scale of the problem”, and a concerted attempt across service providers and NHS England to minimise them. Don’t get me wrong (and I would say this, wouldn’t I?), numbers can be useful as part of a picture, but to turn an arbitrary number into a target does all sorts of violence to the intention underpinning that target. More fundamentally, presenting “the scale of the problem” can implicitly endorse the idea that if smaller rather than larger numbers of people experience fundamental abuses of their human rights, that is somehow OK – if the CQC report had found five people in long-term segregation would that be OK? One person? One person experiencing human rights abuse is one too many, and the fact that this is both possible and happening (with the whole panoply of specialist services, commissioning, policy, regulation and so on) is the logical end-point of a systemic (which, as Mark Neary points out, is a depersonalising cloaking term for a bunch of people making decisions) wish that people with learning disabilities and autistic people didn’t exist.

All over the place, the numbers generated and relied on in these reports are themselves the end-product of deeply discriminatory practices designed to minimise the ‘problem’. For example, the CQC report says that service providers identified to them 62 people with learning disabilities or autistic people in long-term segregation, but on their visits so far (which are not complete) the CQC found another 9 people in long-term segregation where the service provider apparently hadn’t realised that this was their situation. Four out of the 89 providers the CQC contacted didn’t bother to reply – to a review commissioned by the Minister for Health and Social Care and being done by the regulator.

The Assuring Transformation (AT) dataset, which NHS England uses to derive ever more gerrymandered claims of percentage reductions in the number of people with learning disabilities or autistic people in inpatient units, can be subject to all sorts of methods to reduce the numbers without necessarily making any fundamental changes:

·        re-registering specific inpatient units as residential care homes;

·        building ‘step-down’ or similar places in the grounds of psychiatric hospitals or other similarly remote places that don’t count in the numbers;

·        re-classifying people in inpatient units so they are no longer identified within the service as being autistic or having a learning disability;

·        making sure that people coming into inpatient systems get a different label rather than one that would put them into the AT figures;

·        for some providers, simply report far fewer people with learning disabilities or autistic people in inpatient services within AT than are reported in the other dataset of people in mental health inpatient services generally, the MHSDS. In February 2019, 115 people with learning disabilities or autistic people were reported in AT to be in Cygnet inpatient services, compared to 295 people in the MHSDS. Equivalent figures for Elysium Healthcare are 85 people reported in AT compared to 360 people in the MHSDS; for St Andrews it’s 180 people reported in AT compared to 360 people reported in the MHSDS;

·        discharge a person to an inadequate place to live (tick the AT community discharge box), then when it breaks down leave generic mental health services (not usually counted in AT) or the criminal justice system to pick up the pieces.

So it’s no surprise that for February 2019, AT reports that there were 2,310 people with learning disabilities or autistic people in inpatient services at the end of the month, compared to 3,605 people reported in the MHSDS. And even these figures are a minimisation – including people admitted to inpatient units during the month, some of whom leave again in the same month, AT reports that 2,475 people spent some time in an inpatient unit in February 2019, compared to 4,445 people reported in the MHSDS. Across the course of a year, how many people with learning disabilities or autistic people spend some time in an inpatient unit (whether ‘specialist’ or a generic mental health inpatient unit)? We don’t know.

Both the CQC and Children’s Commissioner reports make much use of information on ‘restrictive interventions’ (including restraint, ‘long-term segregation’ and other practices). This is reported by mental health service providers in the MHSDS and again, horrific though the reported figures are, they are a severe under-reporting. Most of the major independent sector providers of inpatient services for people with learning disabilities or autistic people report zero (yes, zero) restraints being used with anyone with learning disabilities or autistic people in their services. The organisations reporting zero restraints in February 2019 (when the CQC review had already started and was widely publicised) include: Cambian Childcare Ltd; Elysium Healthcare; Jeesal Akman; Partnerships in Care; The Priory Group; and The Huntercombe Group. Extreme invisibility.

Alongside these frantically minimised numbers, all the reports tell stories of individuals. As Katherine Runswick-Cole has pointed out, there is an ethical issue in getting people to tell their stories, publicly, when there is no prospect of fundamental change. Over time I’m also becoming increasingly wary of senior people congratulating themselves on their capacity to be ‘moved’ (I confess I have done this myself) by people’s stories if there is no evidence of respect, equality or action.

And as for the Leder report, when it comes to reporting the deaths of people with learning disabilities or autistic people, the urge to deny, minimise and deflect is equally strong. The original Confidential Inquiry reported that the deaths of 37% of people with learning disabilities were amenable to decent quality health care. In the Leder report (which is a voluntary programme relying on reviews conducted by staff who are not independent of the services where people died), reviewers reported that 8% of people had received care that fell so far short of good practice that it significantly impacted on their well-being or directly contributed to their cause of death, and in only 1.9% of completed reviews had reviewers concluded that the person’s death was potentially avoidable. This is without mentioning the fewer deaths of people with learning disabilities being reported to coroners (31% vs 43% of people generally), the 26% of people with learning disabilities being on antipsychotic medication at the time of their death, the 15 people for whom learning disability was written on their death certificate as an underlying cause of death, or the 19 people for whom learning disability or Down syndrome was written as the rationale for a Do Not Resuscitate Order.

The things that dreams are made of

For me, this disdain needs to be tackled head-on. This might be big, but I don’t believe it’s especially complicated – if anything, it might be less complicated than what currently exists to try and pretend people with learning disabilities and autistic people don’t really exist. The conditions that make discrimination more likely also need to be fundamentally addressed. Ways for all children to be educated and spend time together, in whichever ways work for every child and work for those close to them. People with learning disabilities and autistic people taking on positions of power. Education and economics that support everyone to flourish in whatever ways suit. Or, in the words of the Human League:

Everybody needs love and adventure
Everybody needs cash to spend
Everybody needs love and affection
Everybody needs two or three friends

These are the things
These are the things
The things that dreams are made of

And, if things have got worse, this to me means that they are not inevitable and can change for the better. Pie in the sky, typical academic waffle remote from the realities and ‘complexities’, and so on. Yes, and unashamedly so. I hope to be a tiny part of the big, broad social movement that Sara Ryan and Katherine Runswick-Cole have said is needed. To use a horrible phrase, if I’m a human, then I have skin in this game.