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The Howard Journal Vol 00 No 0. March 2021 DOI: 10.1111/hojo.12414
ISSN 2059-1098, pp. 1–24
Designing Solutions for Improved
Support within Health, Social Care
and Criminal Justice for Adults with
Learning Disabilities and/or Autism
who Have Offended
ANDREA HOLLOMOTZ with JENNY TALBOT
Andrea Hollomotz is Lecturer, Department of Sociology and Social Policy,
University of Leeds; Jenny Talbot is Director, Care not Custody Programme,
Prison Reform Trust
Abstract: People with learning disabilities and/or autism encounter considerable
challenges on the pathways through the criminal justice and/or forensic health systems.
This article presents a thematic analysis of focused discussions between users, profession-
als and practitioners from health, social care and criminal justice. It is informed by the
social model of disability, which dictates its focus on solutions for maximising the full
and effective participation of disabled users. Informants raised key challenges, including
indirect disability discrimination and risk aversive practice, and evidenced innovative
solutions. These include person-centred, multi-agency working, screening, information
sharing, inclusive service design, nurturing sustainable key relationships and long-term
community support.
Keywords: autism; desistance; forensic social care; intellectual disabilities;
learning disabilities; offender rehabilitation; personalisation; public sector
equality duty; reasonable adjustments; social model of disability
Foreword
Over a decade ago, when I published my review of people with
mental health problems or learning disabilities in the criminal justice sys-
tem (Bradley 2009) and at the time of the event described in this paper,
we could not predict the unique situation we would find ourselves in now.
Building on progress made and learning from our successes is challenging
during a global pandemic.
The restrictions brought by COVID-19 have created difficulties in the
lives of many people with learning disabilities and/or autism, who may
struggle due to a break in routines, and many of the good practices
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This is an open access article under the terms of the Creative Commons Attribution License, which per-
mits use, distribution and reproduction in any medium, provided the original work is properly cited.
The Howard Journal Vol 00 No 0. March 2021
ISSN 2059-1098, pp. 1–24
described in this paper are faced with additional challenges at a time when
social distancing is a necessity. Person-centred working and bringing to-
gether multiple agencies to develop joint solutions requires repeat contact.
Many people with learning disabilities and/or autism find it harder than
others to participate effectively in online meeting formats. This creates new
barriers to involving this group in the design and delivery of services.
Making time for training or to attend multi-agency planning meetings
has become a luxury, as many desk-based staff across CJS and forensic set-
tings are recalled to the frontline to respond to the Covid-19 crisis. We
must guard against silo working and make extra efforts to maintain effec-
tive working relations for multi-agency cooperation and in our work with
people with learning disabilities and/or autism.
It is encouraging to see the recent commitment by the Secretary of State
for Justice to undertake a programme of work leading to better identifi-
cation and support of people with neurodiversity, and I look forward to
contributing to that work (gov.uk 2020). In addition, many frontline ser-
vices such as Liaison and Diversion, Appropriate Adults and Intermedi-
aries have continued to provide much needed support. To further improve
the lives of people with learning disabilities and/or autism who have been
caught up in the CJS or forensic settings we must ensure that learning from
events such as this is built upon as we return to more ‘normal’ conditions.
The Rt Hon. Lord Bradley of Withington in December 2020
Introduction
People with learning disabilities and/or autism who have offended
encounter considerable challenges on the pathways through the criminal
justice and/or forensic health systems in England and there is a growing
body of literature that explains these challenges, which is explored shortly.
These include the likely over-representation of people with learning dis-
abilities and/or autism in the criminal justice system (CJS), experiences of
inhumane or degrading treatment and a high incidence of reoffending.
Sociological research into the causes for these experiences enables a focus
on broader social issues, which act as ascendants to what are often seen as
‘individual troubles’, as C. Wright Mills (1959) would put it, such as per-
sistent cycles of reoffending. This article uses the social model of disability
(Oliver, Sapey and Thomas 2012) to achieve this objective. In short, this
means that, instead of focusing on individual pathology, our focus is on
how services and environments need to change.
The current literature and findings from this study suggest that health,
criminal justice and social care do often not collaborate as effectively as
they could when responding to the often-complex needs of people with
learning disabilities and/or autism who have offended. This is why this
article presents solutions, which were collaboratively developed by some
of the most innovative users, practitioners and professionals from across
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England. To set the scene, the introduction covers definitions and preva-
lence, disability equality and human rights issues, additional comorbidities
and risks and existing evidence on effective solutions.
Definitions and Prevalence
This article is concerned with individuals with learning disabilities, autism
and co-occurring learning disabilities and autism. It mostly does not dis-
tinguish between these groups. Instead, the shorthand term ‘people with
learning disabilities and/or autism’ is used. The World Health Organisation
(2020) defines learning disabilities1as:
a significantly reduced ability to understand new or complex information and to
learn and apply new skills (impaired intelligence). This results in a reduced ability
to cope independently (impaired social functioning), and begins before adulthood,
with a lasting effect on development.
The NICE (2016) guidance describes autism as:
a lifelong neurodevelopmental condition, the core features of which are persistent
difficulties in social interaction and communication and the presence of stereotypic
(rigid and repetitive) behaviours, resistance to change or restricted interests. … Peo-
ple with autism also commonly experience difficulty with cognitive and behavioural
flexibility, altered sensory sensitivity, sensory processing difficulties and emotional
regulation difficulties.
Estimates about the proportion of autistic people who also have
learning disabilities range from 15% to 84%, with a mean of 52.6%. Fur-
thermore, around a third of people who have learning disabilities also have
autism (Emerson and Baines 2010). People with autism have sometimes
been wrongly diagnosed as having learning disabilities and vice versa. This
has led to individuals falling through gaps in service provision. Such gaps
were the driver for the ‘I Exist’ campaign (National Autistic Society 2002)
and the motivator behind the Autism Act 2009 (Aylott 2011).
Autism affects 1.1% of the general population (National Autistic Soci-
ety 2020). There are currently no reliable estimates about the number of
autistic people in the CJS. Prevalence figures range from 2.74% to 26%
(King and Murphy 2014). The proportion of people known to adult ser-
vices as having learning disabilities is 0.6% although, as explained later,
actual prevalence is likely higher (Hatton et al. 2016). Two separate stud-
ies estimated the prevalence of learning disabilities among prisoners at 7%
(Mottram 2007; Murphy, Gardner and Freeman 2017b). Hence, despite
the vague statistics, it can be concluded that people with learning disabili-
ties and/or autism are likely over-represented in the CJS.
Disability Equality and Human Rights Issues
The social model of disability makes a distinction between impairment and
disability (Oliver, Sapey and Thomas 2012). Impairments are located at the
individual level. The diagnostic descriptions of the labels ‘learning disabil-
ities’ and ‘autism’ are presented in the previous section, and they describe
how these impairments may affect individuals. However, impairments do
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not have to become disabling. Disability only occurs when practices and
environments are ill-equipped to respond to an individual’s needs. For ex-
ample, based on Oliver, Sapey and Thomas’s (2012) distinction between
disability and impairment, Hollomotz (2014) suggested the following dis-
tinction for people with learning disabilities seeking to access offending
behaviour intervention programmes:
Impairment: Difficulties with literacy, with understanding complex words and ab-
stract concepts and with applying learning from one setting to another;
Disability: Restricted learning opportunities, caused by information being provided
in inaccessible formats, including the use of complex words and phrases, abstract
concepts and a heavy reliance on printed text. (p.190, italics in original)
Disability can be overcome by designing interventions especially aimed at
people with learning disabilities and/or autism, with their specific access
and learning needs in mind.
In England, making such reasonable accommodations is a legal
requirement. Here, we have a comprehensive equality and human rights
framework. This includes international human rights instruments, such
as the United Nations (2006) Convention on the Rights of Persons with
Disabilities (CRPD), which promotes the human rights of disabled peo-
ple. Moreover, the Equality Act 2010 prohibits unlawful discrimination
on the basis of disability. This includes direct disability discrimination,
which refers to ‘less favourable treatment of a disabled person because
of their disability compared with others who are not disabled’, as well
as indirect disability discrimination ‘where a policy, practice or crite-
rion is applied to everyone (or would be), but in fact puts (or would
put) disabled people at a particular disadvantage when compared with
others who are not disabled’ (Equality and Human Rights Commission
2017, p.21). To prevent discrimination the Public Sector Equality Duty
(Section 149 of the Equality Act 2010) requires that a public body is aware
of equality issues when planning and enacting policy. With regards to dis-
ability, this means that they need to pay heed to the issue of reasonable
adjustments (in Section 20).
In addition, under the Human Rights Act 1998:
it is unlawful for all public bodies and other bodies carrying out public functions as
defined under the Act to act in a way that is incompatible with rights set out in the
European Convention on Human Rights (ECHR). This obligation is both negative
(that is, not to breach the rights) and in certain circumstances positive (that is, to
take steps to guarantee the rights). (Equality and Human Rights Commission 2017,
p.20)
The Human Rights Act 1998 includes the right to education (protocol 1,
article 2), the right to a fair trial (article 6), freedom from torture and in-
human or degrading treatment (article 3), respect for private and family
life, home and correspondence (article 8) and protection from discrimina-
tion in respect to these rights and freedoms (article 13). Identifying people
with learning disabilities and/or autism in contact with the CJS is a first
step towards complying with article 13. Without additional support this
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population may have difficulties reading and understanding prison infor-
mation and accessing the prison regime, including, as illustrated in the ex-
ample that distinguished disability from impairment, offending behaviour
programmes. In addition, a study by Talbot (2008) into the experiences of
prisoners with learning disabilities and difficulties found that:
over half had been scared while in prison and slightly less than half said they had
been bullied. None of the comparison group [without learning disabilities and/or
autism] said they had been bullied. Prisoners were almost three times as likely as
the comparison group to have clinically significant depression or anxiety. (p.vi)
They were also five times more likely to be subject to control and
restraint and three times more likely to spend time in segregation, which
contravenes article 3 of the Human Rights Act 1998. Once released without
support to manage daily living, the likelihood for this group to be caught
up in cycles of reoffending is high (Murphy et al. 2017a). In other words,
this group requires assistance to achieve equal chances of success in com-
munity resettlement, which constitutes a positive obligation under article
8 of the Human Rights Act 1998 and links to article 19 in the CRPD, which
covers living independently and being included in the community. In par-
ticular, article 19 states that disabled people should have access to a range
of community support services, ‘to support living and inclusion in the com-
munity, and to prevent isolation or segregation from the community’.
Additional Comorbidities and Risks
The majority of people with learning disabilities who offend, especially
those who committed sexual offences, have experienced significant adverse
childhood events (Lindsay et al. 2010), which gives rise to the need for
trauma-informed care. This ‘recognizes the role of adverse events in the
development of high-risk behaviour and honours the subjective interpre-
tation of trauma as a central component of the healing process’ (Levenson,
Willis and Prescott 2016, p.353). Some people with learning disabilities
and/or autism who have offended are diverted into forensic inpatient ser-
vices. Here, Lunsky et al. (2011) found that compared with those without
learning disabilities, people with learning disabilities exhibited more se-
vere symptoms (including challenging and (self-)destructive behaviours)
and fewer resources (such as personal social support). They were affected
by additional disadvantages, resulting in increased risks, such as risks of ex-
ploitation or of becoming homeless. Doyle and de Villiers (2015) assert that
although these risks ‘may not themselves constitute factors directly related
to risk of re-offending they … may act as barriers to successful interventions
aimed at more clearly “criminogenic” risk factors’ (p.173).
In addition, alcohol or substance misuse problems affect roughly
one-third of people with learning disabilities in prison or forensic inpatient
care (Browning, Gray and Tomlins 2016; Chaplin et al. 2017). Although
substance use appears similar in prisoners with and without learning dis-
abilities, the former group are less likely to report this as an antecedent
to their offences, if they are indeed able to make this link (McGillivray
et al. 2016). Some people with learning disabilities and/or autism may have
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additional difficulties with understanding dysfunctional behaviours and
their consequences and services are ill-equipped to respond to these dif-
ficulties, as illustrated by their reduced completion rate of alcohol and
drug treatment programmes when compared with non-disabled people
(McGillivray et al. 2016). Williams, Kouimtsidis and Baldacchino (2018)
also highlight higher risks of adverse health outcomes linked to problem-
atic alcohol use. This may arise from systemic barriers in accessing health-
care services and information (Emerson and Baines 2011; Walker et al.
2016). People with learning disabilities and/or autism also experience addi-
tional social consequences linked to substance and alcohol misuse, includ-
ing exclusion from services (Williams, Kouimtsidis and Baldacchino 2018).
Improving Responses to People with Learning Disabilities and/or Autism
Over a decade ago, Lord Bradley’s (2009) review of people with mental
health problems or learning disabilities (including autism) in the CJS out-
lined a range of recommendations. These include ensuring that the right
support and services are available for people in contact with the CJS, provi-
sion of adequate community alternatives to prison, where appropriate, and
improving care for people leaving prison; and progress has been made.
Liaison and diversion services are now embedded across England. These
seek to identify people with learning disabilities and/or autism when they
first encounter the CJS (NHS England 2020). Evidence suggests improved
health outcomes and a reduction of reoffending (Disley et al. 2016; Earl
et al. 2017). Community Sentence Treatment Requirements provide alter-
natives to prison, and if eligible for, and consented to, use health services
to address mental health, alcohol and drug issues (Department of Health
and Social Care 2019).
Initially under the Transforming Care programme (NHS England 2017)
and now as part of the NHS England (2019) Long Term Plan, efforts are be-
ing made to improve community services for those who display behaviours
that challenge, including offending behaviours. Within prisons and pro-
bation, offending behaviour programmes written for people with learning
disabilities are expanding (CSAAP 2020). The National Probation Service’s
(2019) Health and Social Care Strategy 2019–2022 makes learning disability
and autism priority areas. It aims to address health and social care related
drivers of offending and commits to developing national toolkits for staff
and to increase partnership working with local services.
Getting changes such as these off the ground takes time and the focus
of this article is on further demonstrating the need for such change and
that change is possible.
Methods
The University of Leeds, the Prison Reform Trust and the National Autistic
Society jointly organised a seminar in London in November 2018 to discuss
solutions for improved support within health, social care and criminal jus-
tice for adults with learning disabilities and/or autism who have offended.
This seminar was funded by the ESRC and it built on a similar seminar
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held in May 2017, which has been summarised in a detailed briefing paper
(Hollomotz and Talbot 2018). This article is guided by the written records
from our second seminar. The Methods section considers sampling, the
process of facilitating focused discussions, data processing and analysis.
Sampling
Prior to the event we put considerable thought into framing and
conceptualising what we aimed to get out of the day and how best to achieve
this. Our aim was to encourage debates about effective and innovative solu-
tions to help move practice forward. A purposive sampling strategy was key
to achieving this aim. Delegates attended the event by ‘invitation only’. We
aimed for maximum variation (Etikan, Musa and Alkassim 2016) by invit-
ing representatives from across sectors, professions and regions of Eng-
land. At the same time we employed a homogeneous sampling approach,
which drew in candidates who shared similar traits (Etikan, Musa and Alka-
ssim 2016), namely professionals with positive attitudes towards working
with people with learning disabilities and/or autism, those who had a ‘can
do’ mentality and who were in a position to make decisions.
The resultant group of 48 delegates consisted of eleven delegates from
the criminal justice sector (prison, probation and police), nine from so-
cial care (public and third sector) and nine from health (learning disability
nursing, psychology and psychiatry). Seven worked for advocacy organ-
isations and four came from the legal sector (a solicitor, two prosecutors
and a magistrate). In addition, we had Lord Bradley and two academics,
including the first author of this article. Five members of the Working for
Justice Group also attended. (Permission was given to use this affiliation
and first names.) This group of people with learning disabilities and/or
autism who have experienced involvement with the CJS has eleven active
male members and one female member, who was unable to attend. To off-
set this, some of our practitioners discussed female service users. Of the
five members who attended, two have autism and coexisting learning dis-
ability, and three have a learning disability. None have autism alone. None
were from ethnic minority backgrounds. Hence, the findings in this article
mostly reflect the experiences of white, (adult) men with learning disabili-
ties or coexisting autism and learning disabilities.
Facilitating Focused Discussions
The seminar was chaired by Lord Bradley, author of the Bradley (2009)
report, who has spent many years advocating for the fair and humane
treatment of people with learning disabilities and/or autism and those with
mental health problems in the CJS. His presence and input as someone
who had made change happen helped to frame the respectful, productive
and solution-focused atmosphere which we were aiming for. The seminar
was divided into two parts: first, the keynote panel of national leaders from
health, criminal justice and social care reported on progress in their sector
and their hopes for the future; second, the focus was on practice examples.
There were 13 presentations of 10–15 minutes, as well as two structured
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The Howard Journal Vol 00 No 0. March 2021
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focus group discussions, which capitalised on communication between
delegates in order to generate data (Kitzinger 1995). First, delegates delib-
erated ideas about the cause of the ‘problem’ and pet ideas about how to
solve it. The second focus group concentrated on practice examples and
personal experiences. To achieve a mix of backgrounds, delegates were
allocated to five tables. Here, many delegates had roles (moderators, pre-
senters of illustrative examples, note-takers) and were briefed ahead of the
event and on the day, to ensure consistency.
In line with the principles of inclusive research (Walmsley and
Johnson 2003) we sought to engage delegates with learning disabilities
and/or autism in ways that were meaningful to them. Individuals were en-
couraged, with support, to prepare what they wanted to say in advance. In
the role of presenters of illustrative examples four of the men were asked
to speak for three to five minutes at the onset of focus group 2. (The one
user who did not present at his table held the final speaker slot at the semi-
nar.) After they spoke, the focus group asked questions about the personal
history presented before discussing further illustrative examples offered by
other participants. Moderators were briefed to encourage contributions by
user delegates to mitigate against the risks of power imbalances. The five
sets of table notes indicated that this was successful, as all featured substan-
tive comments made by the users at focus groups 1 and 2. Moreover, the
users named in this article have been supported to read, edit and elaborate
on the points they raised by practitioners with whom they are familiar.
Data Processing and Analysis
Despite our efforts for consistency some table notes were more detailed
than others and some useful information may not have been recorded.
To address this, the notes were sent to each corresponding table chair for
checking. Some commentators were approached for further elaboration.
The results feature some direct quotes from the table notes. Although these
may already have paraphrased the original speaker, using these retains
more authenticity than further paraphrasing would have done.
The written records from the event were imported into NVivo12. This
includes table discussion notes, notes taken by the first author and one ta-
ble note-taker during presentations and subsequent audience discussions,
speaker’s power point slides, and a list of speaker’s ‘key messages’. (After
the event each speaker was emailed to request their ‘key message’ in up to
three sentences.) Next, a word cloud of the 40 most frequently used words
across these written records was created, using a word frequency query of
stemmed words of four letters or more. This means that, for instance, ‘po-
lice’ and ‘policing’ were combined into one word. These methods of data
collection and intentions to use this information were made explicit on the
day. At the same time the event adhered to the Chatham House (2020)
Rule2to promote a free and frank exchange.
The data from the table notes and key messages were organised
thematically in NVivio12. In line with the social model of disability (Oliver,
Sapey and Thomas 2012) these themes focused on social and contextual
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issues affecting individuals. Accounts of desistance were given much
weight on the day and in writing up the findings. Maruna and Mann
(2019) explain that such a focus can help to explore ‘individuals’ social
contexts, embedded social networks and subjective interpretations as
keys to understanding long-term life change’ (p.6). The first draft list of
themes was influenced by the word frequency query. Thematic organising
of the table notes and speaker’s ‘key messages’ resulted in 19 subthemes,
including, for instance, education, autism awareness, housing, substance
misuse and relationships. Further information from the presentations and
subsequent audience discussion notes were included when it added to
the existing themes. Finally, the subthemes were grouped into the four
main themes that are reflected in the headings of the Findings section.
The aim was to incorporate all table notes and ‘key messages’ in the
Findings section. Only during the final stages of editing, to comply with
the journal’s word limit and enhance flow, some notes were edited out,
such as a discussion about preventing school exclusions. This is relevant,
but it is not an offender intervention.
Findings and Discussion
Figure 1 presents a word cloud of the 40 most frequently used words across
the written records of the event and as such it provides a snapshot of the
findings and discussions to come. (Please refer to the Methods section for
more detail.)
The bigger the words appear, the more often they were used, with
the most frequent five words being people (179), need (158), services
(157), support (155) and works (128). The five words with the lowest
counts in the cloud were individuals (31), system (31), circles (30), living
(28) and challenges (27). Terms like autism and the combined ‘learning
disabilities’ should come as no surprise, given the subject matter of the
event. The same goes for prison, probation, police, health and social
care. Interestingly the words rights (33) and risks (34) received almost
equal counts. Delegates were talking about support (155), with the word
‘punish’ receiving not a single count, even after the word frequency
query in NVivo12 was raised to take account of single word occurrences.
Instead, we used words like help (47), understanding (36), training (35)
and sharing (32), which gives a flavour of the atmosphere of the seminar
overall, as delegates discussed best ways for moving practice forward in
partnership with users. We also discussed prevention. This is not included
in the word cloud, as this word got only 21 mentions across the written
records, but the qualitative data presented later on indicates that this was,
nonetheless, a central theme. We discussed the importance of ongoing
support, starting with more consistent screening (32) for both learning
disabilities and autism and information sharing.
We heard many inspirational accounts, both directly from the five self-
advocates and through practitioners. This article cannot present all. To
give a flavour, one example is presented in Box 1. The key points raised
by Graham’s case are discussed at relevant points throughout this article,
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FIGURE 1
Word Cloud of Buzz Words from the Day
namely diagnosis, responding to substance misuse, relationships with pro-
fessionals, reintegration into society, peer support and joined up working.
Box 1: Minutes from Graham’s Table
Graham: I was not diagnosed within the criminal justice system, I had
a troubled childhood, and there was a steady decline of my life after my
first offence. My offences were alcohol related. If I was diagnosed, I’d
have never gone in prison in the first place.
Question:Who has helped you and how did things change?
Graham: My alcohol worker was like a dog with a bone, she would not
let go … even if I let go, she suggested checking for autism. I was finally
diagnosed, didn’t know what autism was, it was a relief, it understood my
behaviour, it understood why I struggled, it brought all that together. … I
started working with the People Focused Group and using my obsessions
as therapy, like Lego, which changed my mental well-being. After diag-
nosis I got into a KeyRing support network. This gave me a grounding
for where I am today, and I ended up as trustee of KeyRing for years.
Two or three years ago I started to run a Lego group.
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Question:What got you to the point of being able to commit to running a
group?
Graham: A passion for helping in any small way that I can help. Shar-
ing that common interest and pushing that forward. Peer support. It
helped me, so I thought it would help others.
Question:What was it that enabled a change?
Professional from KeyRing: Graham was able to see a way out and so
was motivated.
Graham: I didn’t want to become that person that was always strug-
gling, I’d had enough of muddling through, I wanted something good
to happen. The choice came a few years into my support from KeyRing
when I realised, I wanted my life to get better.
Support worker: A non-judgemental unconditionally positive model
of someone sticking by you.
Question:How to get a team who face verbal abuse etc to keep coming back?
Graham: If you believe that someone can change, you need to stick
with them until the end, whatever happens, until you see that change.
Professional from KeyRing: At KeyRing we had an exceptional team
manager who was supportive, gave the team vision and was always avail-
able – this made the difference.
The findings are loosely organised to follow a ‘journey’ through the
system: Prevention is followed by considerations about inclusive service de-
sign. Next, information sharing and consistency are discussed. Finally, key
relationships and community support are discussed.
Prevention
The term ‘prevention’ can refer to relapse prevention, which means pre-
venting individuals from reoffending (for example, Keeling and Rose
2005). By ‘reoffending’, this article means to relapse back into behaviours
similar to those for which a person had previously been in contact with
criminal justice or other services. In addition, prevention can start much
further upstream. The equality and human rights framework described
earlier promotes equal opportunities. To achieve this within the education
system, young people with learning disabilities and/or autism need to be
identified and offered additional support. The relevance here is that a lack
of educational attainments has been linked to social exclusion, which in
turn has, in some instances, been linked to the development of problem-
atic behaviours (Wheeler, Clare and Holland 2014).
Moving on into adulthood we know that in England the proportion
of the population known to have learning disabilities drops from 2.5%
among children and young people to 0.6% among adults aged 20–29 years
(Hatton et al. 2016). Emerson and Glover (2012) claim that this highlights
the existence of a ‘hidden majority’ of adults with learning disabilities. A
senior representative from social care commented at our event: ‘We give
them no support in early adulthood and then are surprised when they
show risky behaviour which sometimes ends up in them hurting themselves
or other people’. Our delegates believed early identification, retention of
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knowledge about a person as they transition from child to adult services
and subsequent better support in early adulthood are pivotal. Guidance
by Public Health England (2019) on collaborative approaches to prevent-
ing (re)offending in children aims to support just that. One delegate sug-
gested that we should learn from people who were not known to adult
services before encountering the CJS. Individuals and their families could
advise what help could have prevented the offence.
Delegates provided a variety of examples of service gaps for people with
autism who do not have learning disabilities. These gaps link to preven-
tion, as without autism specific guidance, some people with autism are at
risk of developing problematic behaviours. For example, a psychologist
explained:
We get lots of panicky calls from the police and local authorities, typically about
young men 16 to 17 years old, who have autism and have developed raving anxiety
in tandem with their sexual development. There follows a long, detailed assessment
but no offer of family therapy, meaningful employment, specialist education and/or
help to integrate into society.
The second point links to an absence of appropriate interventions once
problematic behaviours have been detected. The first point links to a lack
of adequate information about sex and sexuality as a method to prevent
problematic behaviours. Delegates emphasised the importance of appro-
priate information. For instance, an advocacy worker stated:
An autistic child may not make the link about how you get from forming romantic
relationships to having sex and may well be behind their peers in experience of
even friendships. So, unless completed in a specific way for autistic children, sex
education may still not address risk issues.
A solicitor commented that common offences by people with autism he sees
are cybercrimes, harassment and possessing indecent images of children.
Mostly, family carers are not aware that these offences are happening and
those committing the offences are isolated.
Department for Education (2020) guidance on sex education provides
limited insights into how considerations about inclusive design should
shape delivery. Thus, solutions have to be found in the specialist literature.
For example, Asagba, Burns and Doswell (2019) explain that educators
should avoid abstract and jargon language, use concrete examples of ab-
stract ideas and be flexible in adapting existing published resources. Grove
et al. (2018, p.315) discuss how curriculum and materials can be modified
through the use of technology. Evidence further suggests that involving
family carers in sex education can improve outcomes for young people
with learning disabilities and/or autism (Asagba, Burns and Doswell 2019;
Rooks-Ellis et al. 2020), while the use of peer educators has been received
positively by adults (Frawley and O’Shea 2020).
Building Inclusive Services
The National Autistic Society (2017) highlights that professional exper-
tise and services are not always available for autistic patients in specialist
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FIGURE 2
Holding Room
learning disability services. In addition, a service gap remains for autis-
tic people without learning disabilities. An advocacy worker asserts that
learning disabilities professionals working in prisons and forensic services
generally do not feel they have the skills or experience to work with this
group. Hence, disability awareness training was welcomed across sectors.
However, availability of training is not enough. It also needs to be of a
quality that can make a difference and staff need to be able to access it.
One study in a specialist learning disability hospital reported that staff
lacked an understanding of autism, even after compulsory autism train-
ing (Chan et al. 2017). Some delegates reported that being released to
attend training is challenging for wing- or ward-based staff who need
to find cover for their shift. A self-advocate further adds that ‘train-
ing does not always shift entrenched “old school” attitudes’. One ta-
ble discussed that training that involves users as educators can poten-
tially have more impact. An external evaluation of such training pro-
vided by KeyRing found that ‘participants stated that their personal at-
titude towards people with learning disabilities had significantly changed
for the better’ and training had increased their confidence in commu-
nicating with them directly about their needs (Burleigh and Vaughan
2018, p.22).
In addition to training, services need to be designed to meet the needs
of people with learning disabilities and/or autism. Chief superintendent
Jonathan Betts understands that the Public Sector Equality Duty encour-
ages such a change in organisational culture. Betts helped to ensure that
police processes, procedures and environments in Cheshire do not have
a disproportionately unsettling effect on autistic suspects. To do this he
‘walked’ the experience of being brought into custody through the eyes of
an autistic person. This led to several changes. For instance, the signpost
‘holding room’ (see Figure 2), might frighten a person who thinks in literal
terms and does not like touch. This room has since been renamed ‘secure
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waiting area’. This inexpensive example of a disabling barrier being re-
moved has significant potential to reduce anxiety.
Information Sharing and Consistency
Across the CJS – police, courts, prison and probation – there remains work
to be done to ensure that people with learning disabilities and/or autism are
routinely identified, and adequately supported (HM Inspectorate of Pro-
bation Criminal Justice Joint Inspection 2014, 2015; Talbot 2008). A pro-
bation officer reported that in her region three-quarters of those attend-
ing treatment programmes aimed at men with learning disability and/or
learning challenges who have sexually offended have no diagnosis and no
service involvement. Danny pointed out that people with learning disabil-
ities and/or autism who are aware of their condition do not always want to
disclose. Even once a person’s support needs become known, our profes-
sional and user delegates explained that they are often unsure of whom to
turn to for support.
At the time of the event there was no routine screening upon reception
into prison. However, from April 2019 prisoners are screened for learning
difficulties and/or disabilities on first reception into the educational services
of all adult prisons across England (Ministry of Justice 2019b; Wakeling and
Ramsay 2019). Prison and probation use IQ below 70 as the benchmark
for ‘learning disabilities’. They label those with IQ between 70 and 80 as
having ‘borderline intellectual functioning’. These groups are described as
having ‘learning disability and/or learning challenges’ and they are entitled
to additional support (Ramsay et al. 2020). This does, however, not include
autism. Graham describes his autism diagnosis as a turning point, and this
was reinforced by the other delegate with autism.
Delegates were concerned that once they leave prison and probation
many people with ‘learning disability and/or learning challenges’ lose their
entitlement under the more stringent criteria used by health and espe-
cially social care. Many people with autism and increasingly some individ-
uals with learning disabilities tend to be excluded from community ser-
vices, which have been affected by austerity measures over the last decade
(Malli et al. 2018). For instance, between 2010–11 and 2017–18 local au-
thorities in England lost about half of their government funding (Na-
tional Audit Office 2018), but how this has been applied differs across
authorities.
Furthermore, retaining knowledge about people’s needs as they travel
through the system is essential. One note-taker summarised a user’s
thoughts as follows:
A person should tell their story once and agree whether and how that will be shared
with others (and why). Information should be shared along the justice pathway
(police, liaison and diversion, court, probation, prison). Even better, one person
should walk with the individual along this pathway.
Similar suggestions were made at our first event. We summarised this
as a key person ‘holding the story’ (Hollomotz and Talbot 2018, p.21).
However, the then new General Data Protection Regulation (European
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Commission 2020) made delegates nervous about information sharing.
In addition, they commented that knowledge is not routinely retained by
courts. A solicitor was concerned that ‘too many times you start a case with
an individual with complex needs and they have four or five judges’. One
of the speakers presented the case of a woman who displayed destruc-
tive behaviours, which in the past led to frequent arrests and time spent
in prison and hospitals. The complexity of these behaviours required a
joint working approach between family, social care and community learn-
ing disability teams, police, ambulance, fire, probation and alcohol services,
A&E liaison, the lawyer, the local MP and the courts. One judge under-
stood the difficulties that inconsistencies in court responses caused. Since
then, almost without exception, this is the only judge who deals with this
woman. Essentially this means she has a ‘personalised’ judge. This con-
tributes to a more consistent response to her behaviours, which have be-
come less frequent and less severe. However, this solution is an informal
arrangement. Hence, it is not offered more broadly to others who could
benefit.
The updated quality standards of the National Institute of Health and
Care Excellence (NICE 2019) on Learning Disability: Behaviour that Chal-
lenges includes the following quality statements: ‘Local authorities and clin-
ical commissioning groups [will] jointly choose a lead person to oversee
strategic commissioning of services for all people with a learning disabil-
ity’. In addition, ‘people with a learning disability and behaviour that chal-
lenges [should] have a named lead practitioner’. Some delegates forecasted
developments that may potentially help with information sharing. The
NHS England (2019, p.52) Long Term Plan commits that ‘by 2023/24,
a “digital flag” in the patient record will ensure staff know a patient has
a learning disability or autism’. Following piloting this became available
for wider use at the end of 2020 (NHS Digital 2020). The plan includes
a move towards integrated care records across GPs, hospitals, commu-
nity services and social care. However, the rise of electronic databases
and flags used by different agencies increases risks around algorithmic
bias and algorithmic discrimination (Obermeyer et al. 2019), which is why
the lead practitioner ‘holding the story’ remains crucial. This practitioner
could be one formal key relation for the individual when moving into the
community.
Key Relationships and Support upon Community Resettlement
Box 2 shows quotes taken from Derek’s presentation. He co-presented with
the director from his social care organisation. Derek speaks in detail about
factors that enabled his resettlement, including being involved in discharge
planning, key relationships, feeling secure and staff consistency.
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Box 2: The Journey to my Front Door
Derek: I got into trouble when I was younger. I was sent by the court
to hospital. I spent about 18 years in various secure hospitals. In high,
medium and low secure services. I was discharged once, but it all went
wrong, and I had to go back.
The move: What helped?
Derek: Having regular meetings around my discharge and being in-
volved.
Director of Derek’s social care organisation: Really involved. There
was some real joint working going on. Not just people turning up for
meetings.
Derek: Bridging work with the new service I was going to. Develop
trust.
Director: The bridging and development was over a long period, this
helped both of us start to develop trust and understanding.
Derek: This was done in a professional way and not in the way it was
done last time I was discharged.
Director: I think it was important for Derek that he felt safe and looked
after.
My own front door. What helps?
Derek: To me a good service keeps people such as managers and key
staff for the long term, not constant change and people leaving. I need
staff that respect me and treat me fairly. Staff who understand me and
my needs and can help me when I am struggling.
At both events, professionals from across sectors emphasised that finding
and securing housing upon discharge from hospital or release from prison
was a major challenge. Derek’s social care organisation arranged hous-
ing for him. Likewise, Graham and Danny received hands-on support by
KeyRing. For instance, Danny was supported to complete housing applica-
tion forms and to apply for the correct benefits. Danny thinks that without
this help, he would have ended up back in prison.
To enable successful community resettlement, individuals need to
establish positive social support networks. However, an advocacy worker
shared that often community services do not want those who have com-
mitted offences, as they are worried about risk. In their lieu probation can
offer structure and social contact for people. ‘This is often the only so-
cial contact available and there is an associated risk that once the order
ends, the person may well reoffend to get access to social contact again’.
Moreover, disabled people are disproportionally excluded from paid em-
ployment (for example, McMahon, Bowring and Hatton 2019). Graham’s
volunteering work, leading a Lego group and offering peer support, is
an example of a creative solution for establishing meaningful social roles
beyond the restraints of paid employment and existing provisions.
Giving and receiving peer support was hailed as invaluable by all user
representatives. As members of the Working for Justice Group they have
given feedback on their experience of the CJS, supported the Bradley
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(2009) report and been involved in several prolific projects, delivered
awareness training and had their say at the House of Lords and the House
of Commons (KeyRing 2020). Danny explains that the Working for Justice
Group helped him to speak for himself to people in authority. He is proud
that the group has had an impact on raising the importance of using more
accessible versions of information and easy read within the CJS. Beyond
this, Ian describes his support network in Box 3.
Box 3: Ian’s Support Network
Ian is supported by Choice Support twice a week to keep his flat tidy,
budget and manage his bills. He now feels more confident doing his own
shopping, cooking and washing. With support he has been able to live
independently for nearly ten years, having lived with his parents until he
was 40 years old. During this time, he had several support workers, but
he prefers continuity. Once every five weeks the Community Learning
Disability Team help with wider issues; and Ian attends a peer support
group aimed at recognising factors that can lead to offending. With all
this support Ian has improved his ability to develop and maintain rela-
tionships, developed his social skills and become better able to manage
his anxiety when things get difficult. This help in developing his inde-
pendence, alongside finding a job that he enjoys and that suits him has
enabled him to stay in the same job for 15 years and prevented further
involvement with the CJS.
Two speakers at our event introduced Circles of Support and Accountabil-
ity (COSA), which involve using community volunteers to support peo-
ple who have committed sexual offences to safely reintegrate back into the
community. The objective is that the volunteers become a social network
who introduce their core member to various community-based activities
(Wilson et al. 2007). For further information, please refer to the case study
that was included in the briefing paper that summarised our first event
(Hollomotz and Talbot 2018, p.21, box 5.5c). The idea of community map-
ping was also discussed at the second event: We heard about the liaison
and diversion service in one area using its community link workers to find
out about services, supports and amenities in the area.
A representative from social care reflected at our event: ‘The diverse
range of people in the room is illustrative of the need for integrated ap-
proaches’. This was illuminated by Graham’s account (Box 1), who re-
quired a response to needs arising from learning disabilities, autism, men-
tal health, alcohol misuse and offending behaviour. One delegate noted
that ‘just a couple of key relationships can have a massive impact on recov-
ery journeys’. This includes the above discussed informal social networks
and peer support, but also relationships with professionals. Derek empha-
sised that staff need to be respectful, but also understand his risks and sup-
port needs. In Box 1 Graham mentioned that it was his alcohol worker who
made the difference. Looking back, he values that she believed in his ability
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to change, even when he did not. Graham also explained that his support
team, despite facing ‘verbal abuse etc.’ did not give up on him.
Once these services are successfully set up, one representative from the
CJS was concerned that services discharge people who are seen to ‘be do-
ing well’. However, remaining incident-free is often reliant on having the
right services in place that provide structure, safety and boundaries. One
advocacy worker commented that ‘a well-managed need is still a need’. The
positive case histories we heard on the day had in common that individuals
received ongoing hands-on support. For example, Danny stated that what
had made a difference in his resettlement were help with budgeting, bills
and looking after himself.
Conclusion
Behaviour change at the individual level is imperative for preventing
future offending and there is an abundance of literature that explores how
this can be supported, including many excellent articles in this journal.
What this article adds is an exclusive focus on how professional practice
can be optimised, as well as on how disabling barriers can be removed or
overcome when people with learning disabilities and/or autism access ser-
vices within the CJS and forensic health system. This is summed up well
in one user’s key message: ‘People with disabilities can do things with sup-
port’. Designing solutions is not an easy task with quick fixes. This article
demonstrates that there are often many complex issues affecting people
with learning disabilities and/or autism and it rationalises why solutions
need to be carefully planned around individual’s needs.
As we had the aims of outlining enabling practices and environments in
mind from the point of project conception we were highly selective in our
choice of delegates and brought together users, professionals and practi-
tioners from health, social care and criminal justice who had a reputation
for being committed towards pursuing the disability equality agenda and
for making change happen. We also thought carefully about the focus of
discussions and invited presentations and briefed speakers and facilitators
accordingly. The fact that this was successful was reflected in Figure 1 and
its related discussion and is further summarised in the feedback below:
I found the whole day energising, including all presentations and table discussions.
Sometimes it feels like we are trying to climb (and re-climb!) a mountain, just to
embed respect and humanity in our work with this marginalised group, but seeing,
hearing and feeling the will in the room was really uplifting! (senior representative
from criminal justice)
Data processing, analysis and writing up of the findings were driven by
the social model of disability, which acted as a lens that helped to priori-
tise what data to include and how to analyse and relate this to the exist-
ing literature. For instance, approaching the likely over-representation of
people with learning disabilities and/or autism in the CJS through the so-
cial model of disability gives rise to several observations: first, needs not
being identified and met early on in life can be linked to some people with
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learning disabilities and/or autism slipping onto a destructive path. Once
they come into contact with the CJS some individuals’ needs continue to
go unrecognised, which may cause them to struggle to engage. This links
to some spending longer within the system, when compared with non-
disabled people. Finally, lack of community support links to increased risks
of relapse. Over-representation is therefore a public issue of social struc-
tures (Mills 1959), which requires structural change. The findings included
many examples of innovative practices for eradicating or overcoming dis-
abling barriers, which have been evidenced to work in the cases presented.
These lead us to make ten recommendations for practice.
Recommendations for Policy and Practice
1. Person-centred working: The user should be at the centre of decision
making when designing services. This means genuine involvement,
not just tokenistic presence in the room where decisions are made.
2. Inclusive service design: Public services can and must be designed
with everyone’s needs in mind. Chief superintendent Jonathan Betts
advises: ‘Do what you can to understand your users’ experience of
your service. Walk their journey and ask yourself if it’s meeting their
needs. If it’s not, do something about it’.
3. People with learning disabilities and/or autism are likely over-
represented in the CJS where they suffer additional disadvantages
unless their needs are identified and responded to. To enable reason-
able adjustments to be made, screening for learning disabilities and/or
autism should happen upon first contact with the CJS.
4. Many people with learning disabilities and/or autism may not have a
formal diagnosis, but they still need support. Services should be flex-
ible in equating support to needs rather than to a diagnosis.
5. Specialist autism services are needed to meet the unique needs of
people with autism and those with co-occurring autism and learning
disabilities.
6. People with learning disabilities and/or autism are three distinct
groups. Within these groups, individuals are often affected by multi-
ple disadvantages, including childhood trauma, poverty, poor physical
and mental health and substance misuse. They may also have specific
needs relating to, for example, gender, sexuality and race. They thus
require a multi-agency response.
7. Information sharing is essential across sectors and in transitions (for
example, from child to adult services, from hospital to the community).
This is best done through a lead practitioner ‘holding the story’.
8. We need to support individuals to develop sustainable key relation-
ships. These are known agents for change, impacting positively on
recovery journeys and include informal social networks, peer support
and relationships with professionals.
9. Upon release from prison or discharge from hospital many people
with learning disabilities and/or autism require sustained support with
community living, including practical help (for example, with filling
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out housing applications), social care support (for example, help with
paying bills, personal hygiene) and continued treatment for any men-
tal health or substance misuse difficulties. Such support should not be
time limited to a specific date but based on progress made and ongoing
support needs.
10. Joint training was recommended in the Bradley (2009) report and
the positive feedback at our event further indicates that shared think-
ing about what works and pooling ideas where challenges exist is wel-
comed. Delegates requested more events like the one described in this
article, which should include:
a. regional events to allow professionals to build up local networks;
and
b. ones that focus on specific groups, such as women or ethnic mi-
nority populations.
Final Reflections in the Context of a Global Pandemic
Despite unprecedented time and resource constraints, public services con-
tinue to be obliged to meet the public sector equality duty. Concerns about
a fair and just criminal justice and forensic health system, as well as about
effective interventions remain applicable at the time of a global pandemic
and beyond. However, in the Foreword, Lord Bradley pointed out that
some of the practices described in this article have been disrupted or are
now, as Lord Bradley put it, considered a ‘luxury’. In this context the
above ten key recommendations can help to focus the reader’s attention on
some effective solutions that are worthwhile investing in. This investment
will save money. Reoffending costs the UK taxpayer £18.1 billion annually
(Ministry of Justice 2019a) and it is therefore of public interest to reduce
this cost whatever times we may find ourselves in.3
Notes
1 WHO uses the term ‘intellectual disability’, while this article uses ‘learning disabilities’,
as this was the preferred term used by most delegates.
2 This means that the author is ‘free to use the information received, but neither the
identity nor the affiliation of the speaker(s) may be revealed’, unless permission is
given.
3Acknowledgements: We would like to thank Danny, Derek, Ian, Graham and Wayne from
the Working for Justice Group for sharing their personal histories and all the hard
work they are doing to support peers. Special thanks to Lord Bradley for his support,
especially for chairing the event and his thoughtful closing words at the event and
Foreword in this article. Thanks to Jenny’s colleagues from the Prison Reform Trust,
without whose support the event would not have happened. We are equally grateful
to Clare Hughes from the National Autistic Society for help with organising the event
and feedback on the draft, to Tracy Hammond, Hugh Asher and John Hutchinson for
checking the draft with the men who shared their histories and helping them to add
more detail. Thanks to Alison Giraud-Saunders, Tracy Hammond, Kerensa Hocken,
Salma Ali and Mark Priestley for feedback on draft versions of this article, and finally,
thanks to all the participants for their contributions, especially to the table chairs and
note-takers. This research was funded by the ESRC (grant ref. ES/L010534/1).
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Date submitted: September 2019
Date accepted: November 2020
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