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
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
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.