Behaving badly? Managing challenging behaviour among people with intellectual and developmental disabilities
Submitting InstitutionUniversity of Kent
Unit of AssessmentSocial Work and Social Policy
Summary Impact TypeSocietal
Research Subject Area(s)
Medical and Health Sciences: Public Health and Health Services
Studies In Human Society: Criminology
Summary of the impact
This research on those with Intellectual and Developmental Disabilities
(IDD) who exhibit challenging and/or criminal behaviour has impacted on
public policy, professional practice, and carers' and service users'
quality of life, both in the UK and internationally (e.g. Japan, New
Zealand). The impact has been maximised by the researchers serving on
government advisory committees, writing government policy documents and
delivering training to service providers and their staff. The research was
also fundamental in establishing the need for networks to support service
users and their families, leading to the formation of the Challenging
One of the most important factors shaping quality of life for parents and
carers of those with IDD is the presence of challenging, abnormal or
criminal behaviour. In the 1980s, following scandals in institutions for
people with IDD, the established view was that, even if most people with
IDD could be resettled into the community, those exhibiting challenging
behaviour would have to remain in hospital or prison. Research by
Professor McGill (who joined Kent in 1986 as a Lecturer),
Professor Murphy (who, aside from a break between 2004 - 2006, has
worked at Kent since joining as a Senior Lecturer in 1993) and others at
Kent has contradicted this view by demonstrating that resettlement and
deinstitutionalisation can have very positive impacts in terms of reducing
challenging behaviour, as long as care and interventions are organised in
very specific ways [ref 3.4]. In this regard, McGill laid
the groundwork for the integration of values-based and more technical
approaches to managing challenging behaviour: this later became known as
Positive Behaviour Support (PBS). This approach was developed through the
work of the Special Development Team, resulting in a highly influential
1994 book and associated publications [see reference 3.1].
Subsequent research has highlighted that:
- There is a lack of innovative residential services for people labelled
as challenging, with early intervention programmes not widely available
[ref 3.1; 3.4].
- Services for people with more severe IDD can be set up and sustained
in the community, provided Positive Behaviour Support is employed [ref
- Extended training in Positive Behaviour Support is associated with
improvements in staff knowledge of challenging behaviour, the
attributions they made of its causes and their emotional and practical
responses, with research by McGill and Bradshaw (who
joined Kent in 1995 as a Teaching Fellow becoming a Lecturer in 1998,
working until 2003 prior to returning in 2010) demonstrating the
effectiveness of staff training in PBS [ref 3.3; 3.5].
- Challenging behaviour amongst people with mild IDD often brings them
into contact with the Criminal Justice System (CJS). Research by Murphy
and Mason using an innovative learning disability screening tool (LIPS)
has revealed a significant minority (around 7%) of those on probation
have IDD [ref 3.2], with estimates for prison populations being
- Those with IDD are significantly disadvantaged in police stations,
courts, prisons and on probation, having difficulty understanding
complex justice procedures, written documents and forms [ref 3.2].
This is likely to affect the effectiveness of time spent in the CJS: for
example, those on probation with IDD appear to have been in prison more
than their counterparts.
- Serious offenders with IDD, such as those committing arson and sex
offences, can be successfully treated through cognitive behavioural
interventions [ref 3.6].
In sum, the research shows that challenging behaviour among those with
IDD can be managed effectively through a combination of resettlement,
Positive Behaviour Support, cognitive behavioural treatment and
References to the research
3.1 - Mansell, J., McGill, P. and Emerson, E. (2001) `Development and
evaluation of innovative residential services for people with severe
intellectual disability and serious challenging behaviour' in L.M. Glidden
(Ed.) International Review of Research in Mental Retardation San
Diego, CA: Academic Press (pp.245-298).
3.2 - Mason, J. and Murphy, G.H. (2002) `Intellectual disability amongst
people on probation: prevalence and outcome' Journal of Intellectual
Disability Research 46: 230-238.
3.3 - McGill, P., Bradshaw, J. and Hughes, A. (2007) `Impact of extended
education/training in positive behaviour support on staff knowledge,
causal attributions and emotional responses' Journal of Applied
Research in Intellectual Disabilities 20: 41-51.
3.4 - Murphy, G., Estien, D. and Clare, I.C.H. (1996) `Services for
people with mild intellectual disabilities and challenging behaviour' Journal
of Applied Research in Intellectual Disabilities 9: 256-283.
3.5 - Murphy, G., Kelly-Pike, A., McGill, P., Jones, S. and Byatt, J.
(2003) `Physical interventions with people with intellectual disabilities:
Staff training and policy frameworks' Journal of Applied Research in
Intellectual Disabilities 16: 115-125.
3.6 - Sex Offender Treatment Services Collaborative - Intellectual
Disabilities (SOTSEC-ID) (2010) `Effectiveness of group
cognitive-behavioural treatment for men with intellectual disabilities at
risk of sexual offending' Journal of Applied Research in Intellectual
Disabilities 23: 537-551 (Murphy is lead author) [submitted to
REF2, output ID SSPSSR123].
Grant income exceeds £1 million across more than 15 major awards from
stakeholder and beneficiary groups, including the Department of Health
(DoH), the Baily Thomas Foundation, Mental Health Foundation, Remedi, Wolf
Hirschhorn Syndrome Trust, and the National Institute for Health Research.
The most significant awards include:
- Peter McGill. Preventing challenging behaviour of adults with complex
needs in supported accommodation, NIHR (SSCR),
- Peter McGill. Scoping the development of better commissioning for
individuals with behaviour that challenges services, Department of
Health, (01/07/09-31/12/09), £10,000.
- Glynis Murphy. Follow-up of the Camberwell cohort, Department of
Health (NHS R&D), (1995-1998), £117,000.
- Peter McGill. The relationship between aspects of the service
environment and challenging behaviour in people with learning
disabilities, Department of Health (NHS R&D), (1995- 1996),
- Glynis Murphy. Costs and benefits of social care support for
ex-offenders with learning disabilities, NHIR (SSCR),
- Glynis Murphy: Treatment for men with learning disabilities and sexual
offending, Baily Thomas Foundation, (01/09/06 - 28/02/08),
- Glynis Murphy. Effectiveness of cognitive-behavioural treatment for
men with learning disabilities at risk of sexual offending, Department
of Health, (01/01/02-31/12/03), £105,411.
- Glynis Murphy. Symptoms of abuse in people with severe learning
disabilities, Department of Health, (01/11/01 - 30/10/02),
- Glynis Murphy and Peter McGill. Physical restraint and people with
learning disabilities, British Institute of Learning Disabilities,
Details of the impact
The research has impacted on policies and practice in the treatment of
those with IDD exhibiting challenging, abnormal and criminal behaviour
both in the UK and overseas. The beneficiaries have included policy-makers
and practitioners in health and social care, the carers who live with
those with IDD, and those with IDD themselves who have benefited from more
humane and appropriate interventions instead of punitive ones. The Chief
Executive of the Care Quality Commission states that the researchers have
made `an outstanding contribution to improving the quality...care and
support for people with learning disabilities' [see corroboration 5.1].
This is confirmed by the Chief Executive of the Mental Health Foundation
who writes that the research has made `a major contribution' to the
treatment of those exhibiting challenging behaviour [corrob 5.2].
Impact on government policy and legislation
The Department of Health's (DoH) 2007 policy guidance on services for
people with IDD [corrob 5.3] and the Government's policy document Valuing
People Now [corrob 5.4] both cited this research, concluding
that, `where individuals with problems are cared for in environments which
do not respond well to their needs, challenging behaviour is likely to
develop and then to remain in the person's repertoire' and `the reduction
of challenging behaviour is likely to require attention to other factors
(such as communication) than just the behaviour itself' [corrob 5.3,
p.7 and p.9]. The recommendations of Mencap and the Challenging
Behaviour Foundation's influential document `Out of Sight' [corrob
5.5] also drew directly from Mansell's and McGill's research.
Following this, and as a result of the research on Positive Behaviour
Support (PBS), the DoH commissioned McGill to contribute to a service
specification for commissioners, policy-makers and regulators on PBS
services which is being integrated with a similar specification for
services for young people with IDD commissioned from Gore (Kent, 2007 -).
Once integrated, the combined specification will be disseminated through
the NHS Commissioning Board and the Local Government Association. McGill
is also contributing to the development of guidance on PBS through his
membership of steering groups for Skills for Care and the Royal College of
Nursing. Following the Winterbourne View scandal, McGill chaired a DoH
stakeholder event in 2012 and was invited to chair a Ministerial round
table in 2013. Murphy sits on the Ministry of Justice's NOMS (National
Offender Management Service) committee on Learning Disabilities, providing
advice on screening for IDD in prisons. These interactions evidence the
influence of the research on government policy across a range of
departments dealing with people with challenging behaviour and IDD.
Improving professional standards and guidelines
The involvement of the researchers in influential policy networks has
allowed the research to be disseminated to key stakeholders. For example,
in fulfillment of a pledge by the DoH following the Winterbourne View
scandal, Murphy chairs the NICE Guideline Development Group concerned with
challenging behaviour among people with learning and intellectual
disabilities [corrob 5.6]. This role ensures that research evidence
will guide subsequent practice in health and social care services for
people with IDD and challenging behaviour. Murphy also sits on the DoH's
National Learning Disabled Offenders Steering Group (NLDOSG), which has
produced guidance for professionals from health, social care, police,
prison and probation services (Positive
Practice, Positive Outcomes). The Steering Group has also designed
training for prison officers and established IDD screening in prisons [corrob
As a result of the research in relation to mild IDD and challenging
behaviour in the criminal justice system, Murphy was also asked to join
the Steering Committee for Jenny Talbot's `No One Knows' programme (Prison
Reform Trust), which used Murphy and Mason's learning disability screening
tool (LIPS) and Murphy's checklists for action for people with IDD in the
CJS [corrob 5.8; 5.9). The Director of the Prison Reform Trust
states the research `has made a significant impact on national policy and
practice for people with learning disabilities who find themselves in
contact with the criminal justice system' [corrob 5.9]. Murphy was
also invited to help the Foundation for People with Learning Disabilities
(part of Mental Health Foundation) and NOMS to adapt the `Thinking Skills'
Programme for people with IDD: this has been trialled in three prisons [corrob
5.2]. Murphy and Sinclair's research on sex offender treatment for
men with IDD - the Sex Offender Treatment Services
Collaborative-Intellectual Disabilities (SOTSEC-ID) programme - is now
used across the UK (over 500 therapists have been trained). Therapists in
New Zealand (2009) and Japan (2013) have also completed training [corrob
5.10] and training has been requested in Australia and US.
Improving the quality of life of service users and their carers
The research has directly supported service users with severe IDD and
challenging behaviour and their families and carers. For instance, McGill
helped to establish a UK charity in 1997, the Challenging
Behaviour Foundation (CBF) and remains as a trustee and contributor
to the charity's Challenging
Behaviour Charter. CBF promotes evidence-based approaches to
challenging behaviour underpinned by the latest research (i.e.
non-institutional services, ethical use of physical intervention, and a
PBS approach) through a number of activities: CBF website, telephone
helpline (1391 calls in 2012); educational DVDs (including: `An
Introduction to Challenging Behaviour', of which 1286 have sold, and
`Self-Injurious Behaviour', of which 890 have sold) and CBF newsletter
(circulation of 5,000). The Chief Executive states `The CBF has been very
successful at raising the profile of this marginalised group of
individuals, improving the quality of information and support to family
carers... in no small part due to the partnership developed with [these
researchers], which brings together the expertise of leading
academics in the field, with families supporting individuals on a day to
day basis' [corrob 5.11]. In another example of the research's
impact on service users, Murphy has also worked on a number of projects
offering direct support by producing `easy-read guides', both as part of
the DoH's National Learning Disabled Offenders Steering Group's work to
revise prison guides into `easy-read' formats (with Mencap) and also
co-authoring 'You're under Arrest' and `You're On Trial' easy-read books
for service users.
In sum, the research has led to better standards of care for those
exhibiting challenging behaviour by changing policy guidelines, resulting
in improved quality of life for service users and their carers.
Sources to corroborate the impact
(all links correct at time of submission to REF2014)
5.1 - Statement provided by ID 1 - (Chief Executive, Care Quality
Commission). This demonstrates the impact of the research on the quality
of care and support for people with IDD.
5.2 - Statement provided by ID 2 - (Chief Executive, Mental Health
Foundation). Corroboration that the research has resulted in more humane
and appropriate interventions for those with IDD.
5.3 - Department of Health (2007) Services
for People with Learning Difficulties and Challenging Behaviour or
Mental Health Needs London: HMSO. Cites the research.
5.4- Department of Health (2009) Valuing
People Now: a new 3 year strategy for people with learning
disabilities London: Department of Health. Cites the research.
5.5 - Mencap and Challenging Behaviour Foundation (2012) Out
of Sight: Stopping the Neglect and Abuse of People with a Learning
Disability London: Mencap Publications.
5.6 - NICE Guidance
in Development - Challenging behaviour and learning disabilities
Corroboration that the Guideline Development Group (GDG) which Murphy
chairs is overseeing the development of new guidelines.
5.7 - Department of Health (2010) Positive
Practice, Positive Outcomes: A Handbook for Professionals in the
Criminal Justice System Working with Offenders with Learning
Disabilities London: HMSO. Shows influence of research on
criminal justice procedures.
5.8 - See Talbot, J. (2008) Prisoner's
Voices: Experiences of the Criminal Justice System by Prisoners with
Learning Disabilities and Difficulties London: Prison Reform
5.9 - Statement provided by ID 3 (Director, Prison Reform Trust). The
corroborates the impact of the research on the support and treatment of
prisoners with IDD.
5.10 - Statement provided by ID 4 (President, Protection and Advocacy
Japan). This shows the impact of the research on the training of those who
work with sex offenders with IDD in Japan.
5.11 - Statement provided by ID 5 (Chief Executive, Challenging Behaviour
Foundation). Corroboration of the impact of the research on the support
and training activities of the CBF.