Enhancing the lives of people with severe and complex disabilities
Submitting InstitutionManchester Metropolitan University
Unit of AssessmentAllied Health Professions, Dentistry, Nursing and Pharmacy
Summary Impact TypeHealth
Research Subject Area(s)
Medical and Health Sciences: Clinical Sciences, Public Health and Health Services
Summary of the impact
This case study describes the impact of 15 years of research on the
health and well-being of people with severe and complex disabilities.
Through collaboration with education and disability services,
research-based guidance has been developed on communication intervention
and safe eating and drinking, informing:
- National Patient Safety Agency's Guidance Paper on dysphagia.
- Royal College of Speech & Language Therapists' (RCSLT) position
paper on Adults with Learning Disabilities (2010).
- RCSLT's professional guidelines: Communicating Quality 3 (2006).
- Department for Education's training materials for teachers of learners
with severe, profound and complex learning difficulties (http://www.education.gov.uk/complexneeds/).
- Assessments for children and adults with profound intellectual
impairments (Triple C; Routes for Learning).
- Curriculum guidelines for children with severe learning difficulties
across the UK.
- Guidance for health service commissioners developed on behalf of the
Royal College of Speech and Language Therapists and the campaigning
Outputs are also cited in many education, health and social care internet
advice sources (see sections 4 and 5).
The underpinning research was conducted between 1997 and 2012 by Sue
Caton, Darren Chadwick and Juliet Goldbart, in the context of a
longstanding collaboration with the Manchester Learning Disability
Partnership and specialist schools in the Manchester area. The research
comprises two related strands which materially affect the lives of
children and adults with severe and complex learning difficulties, their
families and those who work with them; eating and drinking, and
Difficulties with eating and drinking (dysphagia) are a serious problem
for some people with learning disabilities affecting individuals' health
and quality of life and, in serious instances, can lead to death. This
research [1, 2, 3] examined the implementation of guidelines for
eating and drinking developed by speech and language therapists in terms
of carers' knowledge of the guidelines, the accuracy with which they used
them in practice, and the barriers to compliance. We found 
that recommendations relating to concrete and routinely used management
strategies are easier for carers to adhere to and remember than
support-based strategies such as verbal prompting and pacing. Moreover,
carers implemented management strategies significantly better than they
could recall the details of the written management guidelines. This
suggested a need for carers to re-familiarize themselves with management
strategies and their rationales periodically following initial training.
Furthermore [2, 3], whilst guidance relating to modification of
the consistency of food and drink was generally adhered to by carers,
other aspects, such as pacing correctly; facilitating people to adequately
relax and concentrate; observing and prompting people to pace suitably and
take safe amounts of food and drink in each mouthful, were not, thus
increasing the risk of aspiration and asphyxiation .
Over 80% of people with severe or profound learning difficulties have
communication impairments which merit intervention (Bradshaw, 2007; RCSLT,
CQ3, 2006). The findings reported in  offer a synthesis of
theory and original research demonstrating how a detailed understanding of
the cognitive and social roots of communication can be used to provide
assessment and intervention approaches for children and adults with
profound disabilities at a range of levels within developmental stages
that typical infants would complete by the age of 15 months. The research
demonstrates that reliable progression can be identified through these
early developmental stages, identifying the importance of developing
intentionality (the realisation that one can affect the environment)
typically acquired around 6 months of age for avoiding learned
helplessness and associated behavioural challenges.
The utility of the Affective Communication Assessment is demonstrated and
a sequence of intervention approaches leading to Joint Action Routines is
mapped out. An assessment of early pragmatic skills was also developed
within the research. The synthesised information is incorporated into an
Early Communication Assessment for which reliability data are provided.
Juliet Goldbart. Appointed L2 1/10/1980; SL 1/10/1988; Reader 1/10/2001;
Professor 5/1/2009. Daren Chadwick. Appointed Research Fellow in Speech
Pathology 1999 (joint post between MMU and Manchester Learning Disability
Partnership), Senior Lecturer in Psychology (0.5) and Research Fellow in
Intellectual Disability (0.5) 2001-9. 2009 - Marie Curie Research
Fellowship, Trinity, Dublin. Sue Caton. Research Associate 1999-present.
References to the research
 Chadwick, D. D., Jolliffe, J., & Goldbart, J. (2002).
Carer knowledge of dysphagia management strategies. International
Journal of Language and Communication Disorders, 37(3), 345-358. DOI:
10.1080/13682820210137196 (10 citations)
 Chadwick, D. D., Jolliffe, J., & Goldbart, J. (2003).
Adherence to eating and drinking guidelines for adults with intellectual
disabilities and dysphagia. American Journal on Mental Retardation,
108(3), 202-211. DOI:
10.1352/0895-8017(2003)108<0202:ATEADG>2.0.CO;2 (21 citations)
 Chadwick, D. D., Jolliffe, J., Goldbart, J. & Burton, M.
H. (2006). Barriers to caregiver compliance with eating and drinking
recommendations for adults with intellectual disabilities and dysphagia. Journal
of Applied Research in Intellectual Disabilities, 19(2), 153-163. DOI:
10.1111/j.1468-3148.2005.00250.x (7 citations)
 Samuels, R., Chadwick, D.D. (2006). Predictors of asphyxiation
risk in adults with intellectual disabilities and dysphagia. Journal
of Intellectual Disability Research, 50(5), 362-370.
 Coupe-O'Kane, J. & Goldbart, J. (1998). Communication
Before Speech, London: Fulton. Copy of this book, which includes
empirical data, will be supplied on request.
Much of the research described in the above papers was funded through
approximately £130,000 of Culyer funding gained by a joint bid between MMU
and the Manchester Learning Disability Partnership to evaluate "cutting
edge practice" in speech and language therapy for people with learning
disabilities, from 1999 to 2007.
In addition, a small award of £5950 was gained for October 2009 - October
2010 through competitive tendering from Mencap and Department of Health
Valuing People team.
Details of the impact
Impacts On The Management Of Eating And Drinking Difficulties
Research on adherence to dysphagia management strategies, and the
barriers to adherence were of considerably interest to the National
Patient Safety Agency who incorporated the findings into their Guidance
Paper (ref 0500) which was designed to reduce the deaths and disease
burden resulting from eating and drinking difficulties in people with
learning difficulties. This Guidance Paper identifies best practice for
healthcare organisations, such as a local policy on dysphagia care
including systems for reporting patient safety incidents, provision of
information on dysphagia management and recommendations for staff
training. The risk assessment materials were devised for this report by
authors of the research papers identified in 3 (above).
This research has informed practice in many Trusts, for example Guthrie's
staff training at a medium secure unit (Calderstones Partnership
Foundation Trust), after which increased risk awareness resulted in
increased reporting of choking incidents but significant reductions in
severity. This work has been shortlisted for the National Patient Safety
Award 2013, mental health category [A].
Research is extensively cited in Eating well: children and adults with
learning disabilities, Nutritional and practical guidelines provided by
The Caroline Walker Trust [B].
In addition, the research resulted in the establishment of an RCSLT
Special Interest Group on Dysphagia which has disseminated research
findings and resulting best practice guidance through regular meetings and
seminars. The capacity-building role of this group is evidenced by members
of this group who are now engaging in their own research (e.g. Manchester
NHS PCT Small Grants Scheme: "Knowing when I'm sick and helping me stay
healthy: Parents' insights into the impact of communication on the
diagnosis, treatment and management of health; Department of Health
Support For Science funded: "Training support staff to modify fluids to
appropriate safe consistencies for adults with intellectual disabilities
and dysphagia: an efficacy study."
UK And International Impacts On Communication Assessment And
The approaches to communication assessment and intervention developed in
"Communication before Speech" have informed the widely used Welsh
government initiative for the education of children with profound
disabilities, "Routes for Learning" [C], One of its authors says "the
development group was unanimous in agreeing that it (Communication
Before Speech) was unrivalled in the detail it provided in the very
early stages of communication, and the clarity of the examples it
provided. We felt that teachers could be referred to Communication
Before Speech and would find practical guidance which was soundly based
on evidence. It is worth noting that Routes for Learning is not only
widely used in schools in the UK, but has also been translated into a
number of European Languages. Consequently the influence of
Communication Before Speech has also spread into these other countries."
The book's research is extensively cited in Department for Education's
(2010) Training materials for teachers of learners with severe, profound
and complex learning difficulties [D], module 9 of Scope's
curriculum Supporting Communication through AAC and the QCA guidance
Planning, teaching and assessing the curriculum for pupils with learning
difficulties (2009). It also provides the underpinning concepts for the
Australian Triple C: Checklist of Communicative Competence, one of very
few communication assessments designed specifically for adults with
profound disabilities, and the only one with well-researched psychometric
properties. According to its author [E] "Communication before
Speech" provided a framework for the Triple C...The Triple C used the
terminology presented in "Communication Before Speech" for the 6 stages
of communication — i) reflexive, ii) reactive, iii) proactive, iv)
intentional informal, v) intentional formal and vi) intentional
referential. Much of the descriptive information to accompany the stages
was adapted from the work done by Coupe-O'Kane and Goldbart."
According to the Learning and Skills Excellence Gateway [F] "Written
by two specialists in the field, Coupe-O'Kane and Goldbart is a key text
on early communication. Through an extensive review of the literature it
provides a very comprehensive and clear understanding of pre-intentional
and intentional communication. It also provides methods of teaching
early meanings to children and adults with severe communication delay.
One of the most practical aspects of this book is the two detailed
assessment schedules with extensive notes about their use. It is an
invaluable resource for anyone working with people with profound and
complex learning difficulties. The revisions to Milestones 1-3 of the
Pre Entry Curriculum Framework drew extensively on the Early
Communication Assessment (ECA) described in this book."
The research contained in the book has been incorporated into a wide
diversity of training materials, such as RNIB's Effective Practice Guide:
Becoming a Sensitive Communication partner, Scope's Supporting
Communication through AAC Module 9: Children and Adults with Profound and
Multiple Learning Difficulties.
The pervasive impact of this research enabled Goldbart and Caton to
tender successfully to Mencap and Department of Health's Valuing People
team for a project aimed at providing clear information for commissioners
of services, service providers and carers and family members of people
with severe and complex disabilities (proxy consumers of services) on what
communication intervention approaches were evidence-based (using Sackett
et al's triarchic concept of EBP). This document [6 above] was
published in 2010 by Mencap. In addition to the review of existing
evidence, interview and focus group data were collected from parents of
children and adults with complex communication needs as well as from
researchers and expert practitioners. Thus, this report constitutes both
underpinning research and impact. "The new guide will be a
valuable tool for families and professionals," said Beverley Dawkins
OBE, chair of the PMLD Network and national officer for PMLD at Mencap. "Communication
is a human right that many of us take for granted. It allows people to
interact with others, express their feelings and be involved in the
decisions that affect their everyday lives." [G]
The report has been uploaded to the websites of a wide range of
education, health and social care providers and is cited by the Social
Care Institute for Excellence' Social Care Online [H], NHS
Evidence in Health & Social Care, Values Into Action Scotland, NHS
Education Scotland, Public Health England's Child and Maternal Health
Intelligence Network, the Government of Western Australia's Disability
Services Commission, inter alia.
According to the chief executive of one agency "As part of [our]
staff induction programme, we do sessions on non-verbal communication.
Reference  is central to this training. Staff are
given a copy of this publication and also referred to  as
essential reading. Additionally, we recommend  to professionals from
other voluntary organisations and health and social care staff working
with people with profound and multiple learning disabilities." [I]
It also forms the basis for Mencap's 2013 "How to" guidance on
communication for people with PMLD [J].
Sources to corroborate the impact
[A] Link to 2013 award announcement corroborating the success of
MMU MSc student Guthrie, whose research and service developments draw
heavily on refs [1-4].
[B] Link corroborating the impact of Chadwick and Goldbart's
research on evidence-based national guidance on safe eating and drinking
for children and adults with learning disabilities.
[C] Written testimonial on file from co-author of the widely used
Welsh government initiative for the education of children with profound
disabilities, Routes for Learning, corroborating the impact of Communication
Before Speech on current assessment approaches for children with
profound and multiple learning difficulties (PMLD).
[D] Department for Education's (2010) Training materials for
teachers of learners with severe, profound and complex learning
Reference to Communication Before Speech is made in many of the modules in
this training package, corroborating the impact of the research within the
book on the education of children with PMLD.
[E] Extract from written testimonial on file from lead author of
The Triple C: Checklist of Communication Competencies, the major
communication assessment for adults with PMLD.
[F] The Learning and Skills Improvement Service's Excellence
Gateway appraisal of Communication Before Speech can be found at
Specific references can be found at
[G] Statement by Beverley Dawkins OBE corroborating the impact of
the research contained in Goldbart and Caton .http://www.mencap.org.uk/sites/default/files/documents/2011-01/viewpoint_janfeb11.pdf
[I] Written testimonial on file from Chief Executive of PAMIS,
Scotland's major campaigning and research charity supporting people with
PMLD, their family and carers and professionals.
corroborates the impact of [5 and 6] on current approaches to
communication with people with PMLD.