GAP MAP
An assessment Guideline for
People with Intellectual Disability
who have Mental Illness
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The GAP MAP Project
An Assessment Guideline for
People with Intellectual Disability
who have Mental Illness
Project 1
May 2000
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Acknowledgments
The Victorian Department of Human Services, DisAbility Services Branch, funded this
project.
This report has been prepared by: Dr Jenny Curran, Ms Caroline Mohr, Ms Alex
Phillips, Dr Angus Cook and Associate Professor Robert Davis from the Centre for
Developmental Disability Health Victoria (CDDHV). The CDDHV is a joint initiative of
the Department of Community Medicine and General Practice, Faculty of Medicine,
Monash University and the Department of General Practice and Public Health, Faculty
of Medicine, Dentistry and Health Sciences, The University of Melbourne.
The authors would like to acknowledge the invaluable contribution of the General
Practitioners, Department of Human Services’ managers and carers and service
providers who participated in this study. This project would not have been possible
without a considerable commitment of time and effort from many of them.
The CDDHV Project Team included:
Dr Jenny Curran
Ms Caroline Mohr
Ms Alex Phillips
Dr Angus Cook
Associate Professor Robert Davis
Project Supervisor
Senior Research Officer
Research Officer
Assistant Lecturer
Director, CDDHV
Ethics approval was granted through the Monash University Standing Committee on
Ethics in Research on Humans (SCERH) and the Department of Human Services Ethics
Committee.
Special thanks to Ms Katy Symmons, from the Department of Community Medicine
and General Practice, Monash University, for desktop publishing the initial report.
For more information on the report, contact:
Centre for Developmental Disability Health Victoria
Suite 202, 3 Chester Street
Oakleigh VIC 3166
Telephone: (03) 9564 7511 Fax: (03) 9564 8330
Published by Performance, Planning and Research, DisAbility Services Branch,
Department of Human Services, Melbourne, Victoria, May 2000.
Internet: www.dhs.vic.gov.au/disability
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Contents
Acknowledgments
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Contents
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Executive Summary
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1. Introduction to GAP MAP (Dual Disability Project 1)
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1.1 Aim of Project 1
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1.2 Purpose of Project 1
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1.3 Background
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1.4 Definitions
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1.5 Co-Morbidities
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1.6 The Development of Dual Disability Psychiatry
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1.7 Psychopathology and Intellectual Disability
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1.8 Victorian Perspective of Dual Disability
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2. An Introduction to the Development of Guidelines in Health Care and Dual Disability
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2.1 Description
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2.2 Rationale for the Use of Guidelines
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2.3 Development of Guidelines
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2.4 Adoption of Guidelines
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2.5 Guidelines in Dual Disability
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3. Item Review of the Developmental Behaviour Checklist
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3.1 Method
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3.2 Results and Discussion
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3.3 Summary and Conclusions
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4. A Review of Checklists and Rating Scales in Dual Disability
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4.1 Recent Research on the Reiss Screen
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4.2 Recent Research on the PIMRA
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5. A Description and Review of the Psychopathology Assessment Schedule for Adults with
Developmental Disabilities
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5.1 Checklist Description
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5.2 Summary of PAS-ADD Checklist Studies
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5.3 Conclusion and Rationale for Adoption of the PAS-ADD
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6. The Four Key Assessment Areas in the GAP MAP
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6.1 Communication
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6.2 Physical Disorders
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6.3 Behaviour
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6.4 Medication
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7. The GAP MAP for GPs and for ID/MH Professionals
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7.1 GAP MAP Compilation
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7.2 GAP MAP for GPs
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7.3 The GAP MAP for ID/MH Professionals
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7.4 Focus Group Evaluation of the GAP MAP
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8. Additional Resources for GAP MAP Dissemination
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8.1 GAP MAP Game
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8.2 GAP MAP Pamphlet
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8.3 GAP MAP Folders
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8.4 GAP MAP Video
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9. Evaluation of the GAP MAP by GPs and ID/MH Professionals
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9.1 Course Evaluation by GPs
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9.2 Course Evaluation by ID/MH Professionals
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10. References
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Appendices
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Appendix 1 - Research Protocol for Project 1
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Appendix 2 - PAS-ADD Checklist - Hester Adrian Research Centre (1993)
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Appendix 3 - Communication for Psychopathology Assessment (COMPASS)
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Appendix 4 - Charts
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Appendix 5 – GAP MAP for GPs
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Appendix 6 - GAP MAP for ID/MH
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Appendix 7 - Focus Group Workshop, Feedback Questionnaire (not published)
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Appendix 8 - Video Program Proposal Checklist (not published)
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Appendix 9 - GP Evaluation of GAP MAP Training (not published)
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Appendix 10 - ID/MH Evaluation of GAP MAP Training (not published)
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Executive Summary
People with an intellectual disability have been shown to have a significantly higher
prevalence of psychiatric disorder when compared to the general population and where
these two conditions coexist the person is said to have a dual disability. Individuals
with dual disability provide significant challenges in assessment and treatment for the
services and professionals involved with their care. There are a handful of clinicians
with expertise in dual disability, however there is a clearly articulated need to provide
generic services with the expertise to care for this doubly disadvantaged group.
In July 1998, the Department of Human Services, Disability Services Branch, funded the
Centre for Developmental Disability Health Victoria (CDDHV), to research two interlinked areas of dual disability. The first of these projects, Project 1, was to develop
assessment protocols or guidelines for use by General Practitioners (GPs), Mental
Health (MH) and Intellectual Disability (ID) service workers when assessing an adult
with intellectual disability presenting with possible mental illness. A second project,
which will be referred to later, was to develop training packages in dual disability for
the same professional groups identified above.
Project 1 began with a review of guidelines in health care and dual disability,
identifying key aspects of effective guidelines and incorporating these findings into the
prototype guideline which is called the GAP MAP (Global Assessment of
Psychopathology—Managing the Assessment Process).
The project initially reviewed existing guidelines, checklists and rating scales to
determine what could best be used to assist health professionals in screening for the
presence of a mental illness in an adult who has an intellectual disability. The
Developmental Behaviour Checklist (DBC) was investigated for its validity with the
adult population. Following an item review on 418 files of adults assessed at the
CDDHV who presented with disturbed behaviour, the DBC was found to perform
inadequately in the adult range. While no checklist was found to be applicable for all
patients with intellectual disability, the Psychiatric Assessment Schedule for Adults
with Developmental Disabilities (PAS-ADD) was useful for people in the mild to
moderate range of intellectual disability with the added advantages of current
international use and acceptable validation and reliability studies.
The project reviewed the clinical assessment process of experienced clinicians in the
dual disability field reviewing the similarities and the differences in the assessment of
this group when compared with the general population. The essential elements in this
process were identified and a draft guideline drawn up. This was in turn reviewed by
experienced clinicians outside the project and by general practitioners without
experience in the area to test its construct validity and its practical application by one of
the target groups.
Finally the PAS-ADD was incorporated into the assessment guideline that identified
four key areas that required comprehensive review:
 Communication status
 Physical health status
 Behavioural aspects
 Medication.
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These four areas were integrated into two decision making guidelines presented in easy
to follow algorithm formats for use by the relevant groups and titled:
 The GAP MAP for GPs
 The GAP MAP for MH and ID workers
These guidelines provided a simplified and structured assessment process and were
specifically designed to enable professionals in the field to better identify people with a
psychiatric disorder amongst those with an intellectual disability and to form the
framework for education programs for GPs and other health professionals. The
education process itself provided further opportunities for validation of the assessment
protocol.
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1. Introduction to GAP MAP (Dual Disability Project 1)
1.1 Aim of Project 1
Project 1 aims to:
Design and evaluate an assessment guideline/protocol for use by General
Practitioners (GPs) and health professionals which screens for the presence
of a psychiatric disorder in adults with an intellectual disability.
1.2 Purpose of Project 1
The purpose of this project is to design a useful clinical guideline which will improve
the diagnostic skills of GPs, Mental Health (MH) and Intellectual Disability (ID)
professionals when assessing people who have an intellectual disability and disturbed
behaviour. The improved precision in diagnosis should improve the access to
appropriate generic services for clients with a dual disability and the cooperation
between services to provide the best outcome for each client. This should have
applications for a broad range of clinicians and health care professionals.
1.3 Background
In 1992, the Victorian Department of Human Services funded two Units for promoting
health care for people with an intellectual disability. Both Units were university based
and had additional teaching and research agendas. Initially staff consisted of GPs but
gradually expanded to include a range of professionals including a human relations
counsellor, clinical psychologist, psychiatrist and research officers. In 1998, the Units
were merged to form the Centre for Developmental Disability Health Victoria
(CDDHV) a joint initiative of Monash University and The University of Melbourne.
This Centre provides a broad range of clinical services that address the health problems
of adults with intellectual disability who access the service by referral from their local
GPs. Nearly 60 per cent of referrals include disturbed behaviour or psychiatric illness as
one of the presenting problems. The CDDHV has been regularly involved in the
difficult and time-consuming process of obtaining access to psychiatric services for
people with intellectual disability. This problem was made more difficult by the lack of
familiarity with diagnosis in dual disability by workers and professionals.
The prevalence of psychiatric illness has been cited as high as 40 per cent in people with
an intellectual disability (Borthwick-Duffy 1994; Gostason 1985) and clearly the CDDHV
does not have the resources to deal with this problem on a statewide basis. Patients with
dual disability need to access the same community-based services as others in the
community and there is a clearly demonstrated need to develop expertise within the
generic services, and in particular among GPs, MH and ID professionals (Lennox &
Chaplin 1996; Parmenter 1988).
Teaching health professionals has been a focus activity of the CDDHV that has provided
education for GPs on a range of health issues. The CDDHV was, therefore, the obvious
choice for development of educational packages, aimed at health professionals, that
teach effective assessment of people with an intellectual disability who may have a dual
disability. The CDDHV acknowledges that the GP, MH and ID professionals in
particular, are often the first point of contact when problems arise in the care of a person
who has an intellectual disability.
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If people with dual disability are to receive services appropriate to their needs then MH
and ID professionals need to be able to collaborate together and also with the GP. The
GP has become the focus of health care delivery for people with an intellectual
disability because this population are now living longer and living in the community
with the expectation of using the same health care services as the general population.
With many former residential institutions closed or closing, there are people with
complex medical, psychiatric and behavioural needs who are cared for in the
community (Lennox & Peterson 1998).
1.4 Definitions
1.4.1 Dual Disability
The term ‘dual disability’ describes the occurrence of mental illness in a person with an
intellectual disability. Many authors, particularly in the United States, use the
alternative term ‘dual diagnosis’. Neither term adequately describes the wide variety of
mental illnesses that can be seen, varying from short non-recurring episodes of mental
illness to serious and enduring psychiatric disorders, or the extensive spectrum of
disabilities which are subsumed under the term ‘intellectual disability’.
In addition, although much of the literature in the field of dual disability uses the term
‘mental retardation’ to describe the cognitive disability aspect of dual disability, the
current term preferred in Australia is ‘intellectual disability’. Finally, within the various
consumer and advocacy movements representing the mental health and intellectual
disability fields, there are a wide range of preferred terms which have in common the
intention of removing stigma and emphasising the normative aspects of those who
acquire labels associated with mental illness or intellectual disability.
While recognising the importance of terminology that is both accurate and respectful,
the authors of this report have chosen to use the terms ‘dual disability’ and ‘intellectual
disability’ primarily because they were felt to be the terms most likely to be familiar to
the primary readership of the report.
1.4.2 Disturbed Behaviour
Within this report, the GAP MAP Guidelines and the teaching sessions associated with
it, the authors have chosen to use the term ‘disturbed behaviour’ to describe the
behaviours of concern (Nugent 1997) exhibited by adults with an intellectual disability.
Frost (1984, p-300) defined disturbed behaviour as:
behaviour that might or might not be associated with recognisable
psychiatric illness but that was seriously disruptive or damaging to the
[person with an intellectual disability] or others, was persistent and
recurrent, or was relatively or absolutely unresponsive to normal social
controls and interfered with ordinary social interaction and acceptance.
The term 'disturbed behaviour' implies no assumptions about causality and was
primarily chosen for this reason; neither is it considered to be pejorative. It is a term in
common usage in reference to any member of the community whose behaviour
indicates that they are in need of assessment and treatment for a wide variety of
potential physical and mental health disorders.
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1.5 Co-Morbidities
The co-occurrence of intellectual disability and mental illness is by no means the only
dual disability within psychiatry. As psychiatry has developed, there has also been a
corresponding specialisation reflecting many areas of dual disability, or overlap, for
example, the co-existence of physical illness and mental illness (Liaison Psychiatry),
substance abuse and mental illness (also confusingly called dual disability), personality
disorder and mental illness, autism and mental illness, epilepsy and mental illness,
cultural issues and mental illness (Transcultural Psychiatry), women and mental illness,
the law and mental illness (Forensic Psychiatry).
It is observed that people who have an intellectual disability are also at risk of having
additional disabilities, such as motor or communication impairments, sensory
impairments or epilepsy. The link between such neurologically-based impairments and
dual disability arises from the organic or biological disorder underlying the person’s
intellectual disability. The study of the neurologically-based aspects of mental illness
has become a new and rapidly expanding field called neuropsychiatry which includes
intellectual disability and dual disability centrally within its remit.
1.6 The Development of Dual Disability Psychiatry
Developmental neuropsychiatry has been defined as the study of those disorders with
onset during the developmental period in which mental, emotional or behavioural
problems predominate at one or other stage of development and for which biological
factors have been shown to play a major pathogenetic/contributory role (Gillberg 1995).
While this clinical field is expanding rapidly, the first textbooks which address the area
from an up-to-date perspective have only been published in the last four years and
include the broad range of neuroscientific findings relevant to dual disability, such as
behavioural genetics, neurochemistry and psychopharmacology, neuropsychology,
gestational neurotoxicity, brain imaging research and developmental neuroanatomy.
While neuropsychiatry has contributed greatly at a research level to the field of dual
disability, there remains a dearth of clinical training available that is applicable to those
clinicians working with people with a dual disability. Outside Australia, training in
intellectual disability psychiatry has remained a robust branch of psychiatry in the UK.
In the USA the students of Kanner were able to read about the many children with
intellectual disability he saw in the first English language text book of child psychiatry
published in 1935 (Harris 1995). However, the USA focus on dual disability was lost
with the mid-century swing towards the Meyerian school of social psychiatry and
psychoanalysis, and has since been rediscovered over the last 15 to 20 years (Sovner &
Hurley 1983).
In Australia, the few clinicians providing intellectual disability psychiatry services
disappeared due to a number of factors, but primarily the advent of the movement to
de-medicalise intellectual disability in the 1960s and 1970s. Neuropsychiatry, though
flourishing in Australia, has pursued a path separate from dual disability, and the few
established clinicians within dual disability are child and adolescent psychiatrists with a
strong research focus and commitment. As a result, the field of adult intellectual
psychiatry remains a desolate arena with few mental health service providers willing or
able to address the mental health needs of those with an intellectual disability, whether
child, adolescent or adult.
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1.7 Psychopathology and Intellectual Disability
Since there has been a reluctance to acknowledge the co-existence of mental illness in
adults with intellectual disability in many countries including Australia, the research
into the epidemiology of dual disability has been slow to emerge. However,
epidemiologic studies of community samples have shown that children, adolescents
and adults with intellectual disability are at significant risk for the development of
emotional and behavioural disturbance (Rutter, Graham & Yule 1970; Lund 1985;
Gillberg, Persson, Grufman & Themner 1986). The prevalence rates suggest a four- to
five-fold increase over the prevalence of psychopathology in the general population
(Harris 1995).
Systematic study has shown that people with an intellectual disability are at risk of
developing any of the full spectrum of mental disorders seen in the general population
(Szymanski 1994). Those with mild to moderate degrees of intellectual disability have a
profile of psychiatric disorders that is more similar to that found in the general
population compared to those people with severe and profound intellectual disability.
Autism spectrum disorders and behaviour disorders are increasingly common as the
degree of intellectual impairment increases. Psychotic disorders are frequently over
diagnosed while anxiety and mood disorders tend to be under recognised.
Specific syndromes of intellectual disability may give rise to personality profiles or
psychiatric disorders or behavioural patterns that are associated with the individual
syndrome. This is known as the behavioural phenotype and is increasingly contributing
to the biological basis of dual disability.
1.8 Victorian Perspective of Dual Disability
The service limitations for people who have an intellectual disability and mental illness
in Australia have been a subject for concern over the last decade (Parmenter 1988;
Burdekin 1993). However, Victoria took a lead in this area and supported the
development of two university-based units, which in 1998 amalgamated into the one
centre, the CDDHV, to promote the health care, including mental health, of adults with
a developmental disability (see Section 1.3).
Despite the positive steps already taken in Victoria to provide services for people with a
dual disability, there were still difficulties experienced by ID and MH workers at the
direct care and management level, with little collaboration between services. There was
an initiative by the Department of Health and Community Services in 1994 to address
the problem by way of a protocol between disability and mental health branches of the
Department (Department of Health & Community Services, 1994). This lead to the
DisAbility Services Branch of the Department employing researchers to survey the
prevalence of dual disability amongst their registered clients who had active case
managers. However, the protocol between the DisAbility Services Branch and Mental
Health Services remained largely an unworkable document for practitioners and the
deficiencies in competence amongst psychiatrists in dual disability continued (Lennox
& Chaplin 1996).
Meanwhile, Australia was reaching international audiences with its pioneering research
work on the epidemiology of psychopathology in children and adolescents with an
intellectual disability (Einfeld & Tonge 1992). In the adult field, Davis, Judd and
Herrman (1997a & 1997b) described depression in adults with an intellectual disability
and papers appeared on dual disability services at the 1997 ASSID conference in
Brisbane (Curran, 1997). The first Intellectual Disability Psychiatry Symposium was
held in 1988 at the 33rd Annual Congress of the Royal Australian and New Zealand
College of Psychiatry (RANZCP) in Melbourne. In the east of the State, the Gippsland
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Region of the Department of Human Services was the site of a dual disability project
involving collaboration between managers from both Intellectual Disability Services
and Mental Health Services (Chesters, O’Neal & O’Toole 1998).
Victoria also established a new service in mid-1999 called the Victorian Dual Disability
Service (VDDS). The VDDS was developed to provide training and consultancy to
public mental health services when they were managing a patient with an intellectual
disability. The primary care of people with an intellectual disability whose disturbed
behaviour may be indicative of a psychiatric problem has long been, and continues to
be, a service gap for many people. This gap was recognised by the Department of
Human Services, Disability Branch which funded the current project with the long term
goal of fulfilling the service needs of those with a dual disability.
DisAbility Services Branch, Department of Human Services also funded another project
(Project 2) to develop dual disability educational programs for GPs and MH and ID
professionals (Curran, Mohr, Phillips, Cook & Davis 2000, Dual Disability Training
Project) as well as a third project (Project 3) to evaluate a multidisciplinary team
approach to dual disability (Thurecht, Curran, Watson & Murray 2000; Encompass
Multidisciplinary Clinic Research Project).
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2. An Introduction to the Development of Guidelines in Health
Care and Dual Disability
At the heart of the GAP MAP Project lay the task of developing a process or set of
guidelines to assist a health professional in assessing the disturbed behaviour of an
adult with an intellectual disability, and to more confidently make appropriate
management, treatment and referral decisions, especially in relation to the possible
presence of a mental illness.
Guidelines can contribute to health care as an educational tool and a source of guidance
in clinical decision making. The following section describes types of guidelines, the
rationale for their use and their development, issues surrounding their dissemination
and adoption and the four existing examples of guidelines in dual disability.
2.1 Description
Literally tens of thousands of articles are now entered each month in the US National
Library of Medicines database (Gilbert et al. 1998). A generation ago physicians made
decisions about diagnosis and treatment solely on the basis of their training and their
own clinical experience (Bauer et al. 1999). However, this explosion in research and
knowledge and the informed nature of the general population demands from doctors a
more up-to-date approach to their practice. The task of accessing the research,
evaluating its quality and integrating its findings into a coherent model which can be
incorporated into everyday practice is an unwieldy and unrealistic one for any
individual practitioner (Gilbert et al. 1998). Summaries and guidance are required and
practice guidelines have been developed in many health areas to fill this need.
Clinical Practice Guidelines are “systematically developed statements to assist
practitioner and patient decisions about appropriate health care for specific clinical
circumstances” where appropriate health care is defined as “a situation in which the
clinical benefit obtained outweighs the harm and costs involved” (Field & Lohr 1990, p9).
2.2 Rationale for the Use of Guidelines
The most common aim of practice guidelines is to influence the clinician to improve the
quality of care. Numerous studies have demonstrated great variability in medical
practice quality in even simple procedures performed by doctors in neighbouring
regions, and there is a growing “awareness that a significant proportion of care is
inadequately provided” (Lomas 1991, p-42). Third party funding bodies now demand
services with actual, rather than expected, benefit be provided and quality monitoring
agents are seeking succinct recommendations about appropriate practice (Lomas 1991).
While some critics fear that the implications of the consensus process (often used to
generate guidelines) will discourage physician autonomy and innovation (Lomas 1991),
and there is a valid issue of involving practitioners in guideline development, this has
proven to be less of a concern than the more often asked ‘Will adherence to guidelines
improve patient care?’ (Woolf 1990).
In summary, the rationale for guideline development is to update clinical practice, curb
rising costs and reduce unacceptable interpractice variation in the quality of care. This
will most likely be achieved if clinically useful and scientifically valid guidelines are
developed using a credible method.
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2.3 Development of Guidelines
The approach taken in guideline development can have a powerful effect on their
perceived credibility and rapidity of adoption. Physicians surveyed by Tunis et al.
(1994) expressed greatest confidence in guidelines produced by organisations with
which they were affiliated. Clearly the membership of consensus conferences, panels or
taskforces, the usual generators of guidelines, will be an important factor to consider.
There seems to be general agreement that guidelines must include the results of the
latest and best studies, leavened in some way by an accumulation of clinical wisdom,
and moderated by common sense in relation to cost and practicality (Gilbert et al. 1998).
A credible and potentially influential format clearly demonstrates that a scholarly
process has been carefully followed and ‘good’ guidelines contain specific concrete
recommendations (Lomas 1991). Some guidelines contain or are presented as, clinical
algorithms, “a flow chart that identifies what clinical processes might follow from a
patient’s clinical status” (Gilbert et al. 1998).
Guideline (or algorithm) development is an ongoing process and once devised they
need to be regularly reviewed and updated. Crismon et al. (1999) quite rightly points
out that there is no substitute for good clinical judgement, and guideline developers
should, and usually do, assume a high degree of clinical competence within their
intended audience to start with. Neither are guidelines intended to substitute for
professional training, although they may be presented in more memorable and effective
teaching programs (Crismon et al. 1999).
2.4 Adoption of Guidelines
Unfortunately much more effort appears to have gone into developing guidelines than
in trying to ensure they are implemented (Grol 1992). A persistent naivete pervades the
thinking of those charged with dissemination and adoption, whilst harder nosed
research shows that the effect of continuing education on practice is generally marginal
(Grol 1992). Guidelines, whether credible or not, rarely flow automatically into action,
even if practitioners can be enticed into reading about them. “Most dissemination
strategies have placed too much faith in the model of the rational, information seeking
practitioner, expecting the mere availability of new information to lead to changes in his
or her clinical practice” (Lomas 1991, p- 55). An awareness of new guidelines alone is
insufficient. Practitioner attitudes, knowledge and finally behaviour itself must all be
targeted in a planned fashion.
Guidelines must be published in prestigious, yet accessible, professional journals and
newsletters. They must be generated by opinion leaders, both academics, and clinicians
in the field, affiliated with mainstream organisations. Following dissemination, support
systems must be enacted to facilitate their more likely adoption (Crismon et al., 1999).
Face-to-face practitioner education, charts, pamphlets and patient materials targeted to
the intended beneficiaries will all help practitioners to change ingrained practices.
Support may also be required to meet additional costs of switching from an out dated
method.
2.5 Guidelines in Dual Disability
In the field of dual disability four approaches to the assessment and treatment of
disturbed behaviour in adults with an intellectual disability, systematically presented in
guideline or algorithm format, appear in the literature and will be reviewed. Each one,
developed for its own setting and for similar purposes, has something to contribute, but
is on its own insufficient or unsatisfactory for the purpose envisaged by this project.
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Dr Robert Sovner presented the first model of good practice in this area in 1993. As a
psychiatrist, his work played a significant part in alerting the field to psychiatric
disorder as a primary causative factor of disturbed behaviour. Compared to later efforts
by others his model appears to be deceptively simple but contains the essential elements
of medical, functional and psychiatric aspects, and also includes safety issues and drug
effects. A feedback loop directs attention to the persistence often required to effectively
treat disturbed behaviour in this group. This model, whilst effectively depicting the best
practice assessment strategies undertaken by Sovner himself, is not suitable to teach to a
group of less skilled generic health clinicians.
In later work he wrote guidelines and models directly addressing the assessment and
treatment of self- injurious behaviour (Gardner & Sovner 1994). Sadly, his death in 1997
has created an enormous void in clinical and academic excellence in this field.
Sturmey (1995) recognised a crucial difference in the presenting pathway of adults with
an intellectual disability and members of the general population where a referral for
disturbed behaviour is usually initiated by the person themselves who complains of an
aversive feeling and/or a recent loss in adaptive functioning and presents for treatment.
For an adult with an intellectual disability the pathway to assessment is almost always
different. Most importantly it is likely to be initiated by another person, either a family
member or paid carer/teacher, who may have their own needs and agendas that need
attention. As Sturmey reminds us in the first part of his flow diagram,these may
overshadow the assessment and mislead the unwary clinician.
Another useful aspect of Sturmey's model is the prompt to consider that the presenting
problem may be of a transient nature, related to recent life events. This dovetails neatly
with the Life Events Checklist at the start of the Psychopathology Assessment Schedule
for Adults with Developmental Disability (see Section 5). Disturbed behaviour
temporally related to distress and stressful events often demands a supportive and
nurturing response from clinicians and others in the environment, rather than a rapid
diagnostic decision followed by behavioural and psychotropic medication
interventions. Review and ongoing monitoring are also, as in all interventions, highly
recommended.
In the third stage of this model the prompts for assessment resemble the Sovner
diagram, with two important additions. The first, to consider empirical interventions
when the cause of the disturbed behaviour cannot be determined reflects the real life
situation encountered by clinicians in this field. Finally, the inclusion of behavioural
overlay, originally described by Lowry (1994) is an important phenomenon for
clinicians to understand, and acknowledges that multiple factors will inevitably
combine to produce the disturbed behaviour exhibited by the person being assessed.
Again this is a model of assessment and treatment that could only be undertaken by a
skilled team of experts in the field of health care, psychiatry and behaviour
management for people with an intellectual disability.
Pyles, Muniz, Cade and Silva (1997) describe a Behavioural Diagnostic Paradigm – The
Howe Model which was written to guide an interdisciplinary team through the
assessment and treatment of the disturbed behaviour of adults with an intellectual
disability, in the face of litigation around previous behaviour control attempts
employing mainly anti-psychotic medications. The authors are also scathingly critical of
the effectiveness of many of the behavioural technologies employed and the methods of
their implementation.
A fundamental principle which underpinned the construction of this algorithm is,
“Behaviour/symptoms are determined (have a cause), they do not happen by chance,
[and] the core difficulty in determining appropriate interventions is the discovery of
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why the problems are occurring” (Pyles et al. 1997, p-191), and the belief that ultimately
these causes are knowable. However the process of finding out what is causing and
maintaining disturbed behaviour can be daunting unless a system is in place to guide
the clinicians undertaking this task.
The guidelines explore medical, functional and psychiatric causes of disturbed
behaviour and the model contains feedback loops at every stage of assessment and
treatment so that no aspect is ignored and no respite for the treating team is sanctioned
until the person is settled and as well as possible. Pyles et al. (1997) are critical of the
Sturmey model for failing to include feedback loops “which can give the illusion that
once an intervention is implemented further assessment is not necessary” (p-195). The
Howe Model also highlights the use of operationalised behavioural criteria, leading to
comprehensive data collection and the empirical testing of all interventions.
It is almost impossible to be critical of this complex model, except perhaps to recognise
that few settings would be able to staff a team which would contain the multiplicity of
skills required to implement such an approach. Certainly in this project which aimed to
develop a model suitable for GPs and health workers to base their largely individual
efforts on, a different model is needed. However, there are aspects of the Howe Model
which need to be replicated in any sound approach.
Finally Nugent (1997) in her book A Handbook on Dual Diagnosis, devotes her final
chapter to describing a comprehensive assessment process, outlined in the following
steps.
1. List all the behaviours that are a concern.
2. Specifically define all these behaviours.
3. Collect data regarding the occurrence of the behaviours to determine patterns.
4. Gather a complete history of the individual.
5. Investigate any significant changes in the person’s life that occurred before, and
relatively close to the onset of the behaviours.
6. Conduct a complete medical examination.
7. Evaluate the individuals physical environment.
8. Investigate how support persons interact with the individual.
9. Determine what skills could be taught to the individual to assist him/her to better
manage life.
10. Differentiate between potential psychiatric syndromes and behaviours.
11. Develop a treatment plan based on the results of the assessment (Nugent, 1997).
Very few, if any clinicians would be able to cover all these steps personally. It is a
description of a process best undertaken by a skilled interdisciplinary team, or a group
of specialist professionals working in separate situations but maintaining excellent
liaison.
Frontline clinicians need help to be practically comprehensive in their assessment but
only as comprehensive as their role expects them to be. Not every health professional
will be a skilled Dual Disability practitioner. The main task in preparing a guide for
general use was to determine the practical limits of the generic health workers role. The
four pieces of work described here (Sovner, 1993; Sturmey, 1995; Pyles et al., 1997;
18
Nugent, 1997) all contain important tasks, but which ones can generic staff hope to
complete and how do they most efficiently undertake them? Having done the initial
assessment, where do they then refer to for further assessment and treatment? The
guidelines developed in this project attempted to answer these questions.
One early decision about guideline content foreshadowed in the research protocol
document (see Appendix 1) was to include a checklist or rating scale of disturbed
behaviour to assist in assessment and diagnosis. The recently constructed Australianmade Developmental Behaviour Checklist was the first instrument considered, and the
initial work on item review for an adult population is described in the following section.
19
20
3. Item Review of the Developmental Behaviour Checklist
The Developmental Behaviour Checklist (DBC) (Einfeld & Tonge 1992) was developed
in Australia in the early 1990s using the format of the Auchenbach Child Behaviour
Checklist (Einfeld & Tonge 1992). The checklist items were derived from the clinic files
of an Australian sample of children and adolescents with an intellectual disability.
Studies by Professors Tonge and Einfeld have found that the DBC reliably predicts
severity of psychopathology in children and adolescents with an intellectual disability
along six behavioural and emotional dimensions and discriminates well between
psychiatric cases and non-cases (Einfeld & Tonge 1992).
This checklist has been widely used and it was considered suitable for use with adults
with an intellectual disability with only a few changes in the wording of items, and the
addition of several supplementary questions about forensic issues. These changes had
been made in 1997, however, no formal studies had been conducted on this adapted
instrument.
Given the DBC's advantage of relevance to the Australian population, it was decided to
consider using it in the GAP MAP, but to first test the robustness of its items with an
adult clinic population.
3.1 Method
The method adopted for determining the behaviours and emotions of concern was to
survey the CDDHV files of adult clients referred for ‘behavioural’ difficulties. The
CDDHV has provided a small health service to adults with an intellectual disability in
Victoria since 1990. The CDDHV database contained the names of 418 adults with an
intellectual disability (or developmental disability) who had been referred to the
CDDHV with disturbed behaviour and had been seen and assessed. Distribution of the
IQ levels of this sample and comparison with the total population of people with an
intellectual disability can be seen on Table 1.
The files were accessed by CDDHV clinical staff as part of an ongoing clinical audit
process. No client identifying information was recorded as part of this review and none
is reported in the results.
Information about behavioural and emotional disturbances was recorded on each of
these 418 files by the CDDHV doctors from their observations during appointments.
The files also contained reports from parents and teachers and ID workers, the clinical
observations of psychologists and psychiatrists, and other health specialists. No
standardised behavioural rating scales or checklists were consistently or frequently
used. Every effort was made to decipher handwriting. The descriptions of behavioural
and emotional disturbance recorded in the 418 files were extracted and synonymous
terms were reduced to a single term.
Excluded from the descriptions of disturbed behaviour were:
 Behaviours explicable solely on the grounds of developmental delay
 Behaviours attributable solely to physical disorder
 Non-specific broad descriptions
 Ill defined terms, for example, psychotic.
21
Descriptions were matched with existing DBC items if possible. DBC items for which
few direct matches were found and additional unmatchable behavioural descriptions
were listed. Two groups of unmatchable behavioural descriptions were identified. One
group contained descriptions found in more than one file, and the second group were
items that described the behaviour of only one person in the sample.
Table 1 Distribution of IQ Level of Clinic Sample Compared to the General Population
Level of Disability
Number of Clients
% of Total Sample
% in Population
None
6
1.4
Borderline
18
4.3
Mild
93
22.24
85
Moderate
59
14.11
10
Severe
31
7.41
3.5
Profound
2
4
1.5
Unknown
209
50
TOTAL
418
100
100
3.2 Results and Discussion
The sample of 418 adults with an intellectual disability referred for disturbed behaviour
is a sample of convenience and not a representative sample. On one of the most
important dimensions (IQ distribution) its most significant shortfall is in the mildly
intellectually disabled group (22 per cent compared with 85 per cent) where it appeared
to contain only a quarter of the percentage required to meet the population average.
However, it was only discovered after the file review was finished that the database
contained very limited information about level of disability. In fact, only half the sample
had been able to be coded for level of disability. This would be a problem if a
representative sample had been required for this task, however, it is sufficient for this
purpose that it is established that the files described the behaviour of a large group of
adults with an intellectual disability. Only 24 adults had a developmental disability
(with an IQ over 70).
3.2.1 DBC Items for Which Few Direct Matches Were Found in Adult Files
 Resists being cuddled touched or held. This may be an appropriate behaviour for adults
to have, to protect against sexual abuse.
 Doesn’t mix with own age group. Prefers to mix with older or younger people. May
happen but not perceived as a problem, unless of course there are sexual overtones
to spending time with younger children.
 Overly interested in looking at, listening to or dismantling mechanical things.
 Preoccupied with one or two particular interests. When these two items were mentioned
in relation to adults, they were largely accepted as personal characteristics and if
possible used to engage the person in work or leisure interests.
 Smells, tastes or licks objects. Rarely mentioned and not seen as a problem, more an
idiosyncratic behaviour.
22
 Likes to hold or play with an unusual object. As above, may have been normalised in
some way
 Confuses the use of pronouns. Rarely mentioned—perhaps for many people it is
developmentally fading.
These seven items were rarely identified in the adult files. When they were mentioned it
was more by way of describing the person and their personal characteristics rather than
describing disturbed behaviour for which the referring person was seeking assistance.
Most of these items probably describe the longstanding behaviour of adults with
Autism Spectrum Disorders, behaviour that was now tolerated and even normalised in
some way by parents, supervisors or other staff. In general, they are not behaviours that
are life-threatening or a danger to others. They may be stigmatising and inappropriate
in a range of settings, but not ‘disturbed enough’ for carers to want help with. They
were never the reason for the referral being made.
3.2.2 Additional Unmatched Behavioural Descriptions Found in Two or More Adult
Files
 Disoriented/confused
 Loss of interest in activities usually enjoyed
 Decrease in the performance of activities of daily living
 Substance abuse
 Refusing to participate in hygiene routines
 Hiding, isolating self
 Blunted/flat affect
 Psuedoseizure behaviour
 Sweaty/hot/flushed/trembling
 Persistently asking for food/cigarettes
 Bizarre/gibberish/incoherent speech
 Mute/refusing/reduction in speech
 Negative statements about self and life.
These 13 descriptions present a significant challenge to any notion of using the DBC as
it stands with an adult group of people with an intellectual disability and disturbed
behaviour that may be caused by or related to psychiatric disorder. Many of them
describe key criteria of several major psychiatric disorders which cannot be ignored
when attempting to measure the severity of psychopathology in any group of adults,
with or without an intellectual disability.
Each item could be related to more than one class of psychiatric disorder, for example,
‘refusing to participated in hygiene routines’ could be related to an affective, psychotic
or organic disorder. As with the general population, it is not the presence or absence of
specific behaviors that forms a diagnosis, but a constellation of signs and symptoms
(behaviours, thoughts and feelings). Only further work would reveal the true
prevalence of these disturbed behaviours in the population of adults with an intellectual
disability and their relevance to a range of mental illnesses.
23
3.2.3 Additional Unmatched Behavioural Descriptions Found Only in One File
 More vocal, increase in gestures and signs
 Speaking in different voices
 Violently shaking head to music
 Excessive housecleaning
 Attempted kidnapping
 Rolling in the mud
 Constantly moving furniture
 Digging up the garden at night
 Having a phobia that others might stand on toes
 Enjoys medical attention
 Cries uncontrollably when visiting a doctor
 Smearing everything
 Farts on purpose
 Eating cigarettes, whether alight or not
 Refusing to let father have coffee in the morning
 False confession of sexually abusing others
 Booked birthday cake three years in advance.
These 17 items describe disturbed behaviours that were usually concerning to carers,
but may or may not have been the reason for the referral to the CDDHV. Only a few of
these behaviours are potentially harmful to the person or their carers, and some
descriptions have a more apparent relevance than others to a diagnosis of a psychiatric
disorder.
3.3 Summary and Conclusions
The DBC items were compared to the descriptions of disturbed behaviour found on the
CDDHV files of adults with intellectual and developmental disabilities. When these
descriptions were examined two main difficulties in using the checklist with adults
were found:
1. A small group of items (7) did not appear to be identified as particular problems for
adults with an intellectual disability.
2. A larger group of behavioural descriptions transcribed from the files were not able to
be matched with existing DBC items. A subset of this group were mentioned very
rarely and whilst of interest are probably not occurring frequently enough to warrant
inclusion.
The DBC could be modified to incorporate these findings. More items may need to be
added than taken away, and this may present a difficulty with the overall eventual size
of the checklist. It could be concerning if the DBC became much longer, as it may be
difficult for carers to reliably and comfortably complete. Further consultations with
24
experts in the field and further studies which examine item robustness would also be
helpful. Once a potentially valid instrument has been drafted, formal reliability and
validity studies would need to be undertaken that may suggest further adjustments to
the content or structure. Normative data for adults also needs to be determined and the
relationship between scores on this new scale and the severity of psychopathology
examined.
As the DBC would not be available to this project in a suitable format, a review of other
potentially suitable instruments was undertaken and is included in the following
section.
25
26
4. A Review of Checklists and Rating Scales in Dual Disability
Assessment instruments provide a systematic method for describing clinical
phenomena and their use in psychiatry and psychology is expanding. However, people
with an intellectual disability may present with mental illness in unique ways that make
utilisation of standard assessment techniques difficult or inappropriate (Hurley et al.
1998).
The search for a special rating scale, checklist or other screening or diagnostic
instrument that could assist GPs and other mental health professionals to assess
disturbed behaviour in adults with an intellectual disability, continued with the
comprehensive review of all available instruments published by an international leader
in the field, Dr Michael Aman. Aman, one of the developers of the Aberrant Behaviour
Checklist (ABC) (Aman & Singh 1986), published his review in 1991. His findings will
be presented below and work completed since that time on two instruments, the Reiss
Screen for Maladaptive Behaviour (Reiss 1988) and the Psycho-pathology Instrument
for Mentally Retarded Adults (PIMRA) (Matson 1997), will also be summarised.
The earliest and best-known rating scales are the ABC and PIMRA and Reiss Screen.
The ABC was intended as an aid in the assessment of drug treatment effects, the PIMRA
was developed as a research instrument and the Reiss Screen as a cost-effective means
to screen large numbers of people for eligibility for dual diagnosis programs (Hurley et
al 1998)
Aman pointed out that there were “recurring problems with [all the] available
instruments” (Aman 1991 p-178).
In summary he stated that:
 Their sensitivity (the probability that a person who has a psychiatric or behavioural
disorder will be classified) and specificity (the probability that a person without a
psychiatric or behavioural condition will be classified by the instrument as not
having a disorder) are largely unknown.
 For most scales the diagnostic accuracy is essentially untested. This is partly because
at lower IQ levels the very expression of psychopathology may change in ways we
don’t yet understand, and even in the mild range of intellectual disability clinical
presentation will vary. The lack of a ‘gold standard’ in diagnosis must be
surmounted, which would result in the development of valid diagnostic criteria for
people with an intellectual disability equivalent to DSM 4 or ICD 10.
 Standardisation is mostly inadequate, with scales being developed and then tested
on very small groups of people, or on larger numbers but from a narrow cohort, for
example, an institutional population. Standardisation studies must take into account
age, gender, level of IQ and residential setting, at least. Funding to support largescale standardisation trials is very limited.
Aman concluded that only the Reiss Screen for Maladaptive Behaviour presents data on
the accuracy of the classification achieved, however, as it was developed in 1988 and
based on DSM III criteria, it is beginning to look somewhat dated as the internationally
accepted classification systems move on. This is also true of the PIMRA.
Hurley et al also concluded that “there is no consensus in the field about which one (i.e.
rating scale) is best”(Hurley et al 1998, p-92).
27
4.1 Recent Research on the Reiss Screen
Publishing in 1994, Rojahn et al and Sturmey and Bertman (1994) both investigated
using the Reiss in studies with other instruments in the area and came to essentially
different conclusions. Rojahn et al. investigated depression using the Reiss Screen and
two other measures of depression in a small sample of adults with a mild and moderate
intellectual disability and found that there was remarkably low convergent validity
between the scales which purported to measure the same construct. Sturmey and
Bertman used the Reiss Screen the PIMRA and the ABC in a larger institutional group
and found some reasonable correlations between the measures, confirmed the factor
structure of the Reiss Screen but also found that it had very patchy internal consistency.
Three further pieces of work by Sturmey and others published in 1996 (Sturmey,
Burcham & Perkins 1996; Sturmey, Burcham & Shaw 1996; Sturmey, Jamieson et al.
1996) concluded that there was a lot more work that needed to be done on the Reiss
Screen. In one study of 188 community-based adults, 49 per cent scored over the cut off
score, and while some scales demonstrated good psychometric properties, others did
not. However, it was the attempt to confirm the original factor structure that produced
the most questionable results.
Confusingly, in 1997 Havercamp and Reiss published a confirmatory factor analytic
study of the Reiss Screen, and claimed that the factors were stable and reasonable fit for
the original eight factors was demonstrated.
4.2 Recent Research on the PIMRA
Slightly less work has emerged on the PIMRA. Dutch researchers (Minnen, Savelsberg
& Hoogduin 1994) used both the PIMRA and the Reiss Screen with 89 adults with mild
intellectual disability and found a strong relationship between the two, but very poor
correlations between the informant and self report versions of the PIMRA, and weak
psychometric properties on the sub-scales.
Two studies on the schizophrenia sub-scale of the PIMRA appeared (Linaker & Helle,
1994 and Swiezy et al., 1995). Linaker and Helle found that they had to remove one item
from this sub-scale before it would correctly identify 75 per cent of non-disabled
patients with schizophrenia, and concluded that it should only be used with other
measures in research settings and definitely not as the basis for diagnosis in clinical
settings. Swiezy et al. (1995) were satisfied that the schizophrenia sub-scale is valid after
using it with 65 adults with mild to moderate intellectual disability, and also
recommended its use as a broadbased measure. Again no consensus has emerged to
support the PIMRA's use.
Without more substantial psychometric support for either the Reiss Screen or the
PIMRA, and certainly nothing to help choose between the two, the research team set
about exploring other possibilities. The more recently developed PAS-ADD Checklist
and the few studies conducted on it are outlined in the following section.
28
5. A Description and Review of the Psychopathology Assessment
Schedule for Adults with Developmental Disabilities
5.1 Checklist Description
The Psychiatric Assessment Schedule for Adults with Developmental Disability (PASADD) Checklist is a screening instrument designed to help carers, that is, a family
member, paid carer or day supervisor, recognise mental health problems in people with
an intellectual disability and make informed referral decisions. Developed in 1993 it
was not available to be reviewed by Aman in 1991.
Structured information from informants is of great value in the process of mental health
evaluation. Care staff and families have the most immediate perception of changes in
the behaviour of the people for whom they care, but do not necessarily have the
knowledge to understand these behaviours. The Checklist is one part of a multi-level
system developed at the Hester Adrian Centre, Manchester University (Moss, Prosser,
Costello, Simpson & Patel 1993), consisting of three components:
a) The PAS-ADD —a semi-structured interview for use with respondents who have an
intellectual disability and for key informants, which uses a computer algorithm to
produce diagnoses.
b) The PAS-ADD Checklist—a short 29 item psychiatric symptom checklist.
c) The Mini PAS-ADD—a more comprehensive checklist for use by professional staff to
document the symptom information necessary to make a preliminary psychiatric
assessment.
The PAS-ADD Checklist (Appendix 2) consists of a life-events section and 29 symptom
items scored on a four-point scale. The items are worded in everyday language, making
the checklist suitable for use by individuals without a background in psychopathology.
The purpose of the PAS-ADD Checklist is to discriminate as sensitively and accurately
as possible between those people with an intellectual disability who have significant
mental health problems and those who do not. Items were selected from the PAS-ADD
interview to go into the Checklist that were most predictive in past studies of whether
the person had a diagnosable psychiatric disorder. This item set was examined and
supplemented to ensure that all the care domains of psychopathology were represented
(Moss et al. 1998).
The four point rating scale was designed to provide the best compromise between
simplicity and reliability. Item scores are added to derive three threshold scores, to
indicate a possible:
 Affective or neurotic disorder
 Organic condition
or
 Psychotic disorder.
Anyone scoring above one or more of the thresholds should be referred for further
evaluation, and those scoring at or just below should be regularly and frequently
monitored.
29
5.2 Summary of PAS-ADD Checklist Studies
The following studies of the PAS-ADD Checklist have been reviewed, and a brief
summary attached.
1. Roy A., Martin D.M., Wells M. B. (1997) Health gain through screening – mental
health: Developing primary health care services for people with an intellectual
disability, Journal of Intellectual & Developmental Disability, p-22, pp 227-239.
This study aimed to identify people with an intellectual disability with significant
mental health problems who were not receiving psychiatric services. Screening was
conducted using the PAS-ADD on the first 127 patients who agreed to participate, from
a possible total local ID population of 388. Thirty-three per cent scored over the
threshold on one or more scales (67 per cent over one, 28 per cent over two and 5 per
cent over three). This group had significantly higher scores on the life-events scale also.
Most also had significant health problems identified as part of the same study. The
results indicated a significant unmet need for psychiatric services in the district, as 48
per cent of people who scored positively on the PAS-ADD were not receiving special
services.
The authors concluded that “the PAS-ADD is a useful and user-friendly instrument
which can help identify unmet mental health needs and is useful to the psychiatric
services in that it allows (their staff) to meet health needs appropriately” (p-231).
2. Moss S.C., Prosser H., Costello H., Simpson N., Patel P., Turner S., Hatton C. (1998)
‘Reliability and validity of the PAS-ADD Checklist for detecting psychiatric
disorders in adults with intellectual disabilities’, Journal of Intellectual Disability
Research, 42, pp173-183.
This paper presents the results of two studies evaluating the reliability and validity of
the PAS-ADD Checklist. The authors make the point that all previous instruments were
developed in the USA, and were designed for a particular pattern of service delivery
different to the local setting of the study (in Britain, where access to a psychiatrist was
not particularly difficult). American instruments were not designed for the purpose of
making decisions about possible referral because it was not often possible to refer, and
also the American instruments included other behavioural (challenging) items as well
as items relating to Axis 1 disorders.
Study one examined factor analysis and internal consistency and study two inter-rater
reliability and validity. Factor analysis of checklist items completed on a community
sample of 201 individuals yielded eight factors, seven of which were readily
interpretable in diagnostic terms. Internal consistency of the scales was generally
acceptable. Inter-rater reliability in respect to individual items gave a fairly low average,
however agreement on case identification, the main purpose of the Checklist, was quite
good with 83per cent of the decisions being in agreement. Validity in relation to clinical
opinion was satisfactory, with case detection rising appropriately with the clinically
judged severity of disorders.
The authors conclude that “the PAS-ADD Checklist was designed to address the
problem of identifying at-risk individuals and the results presented…show that layraters can validly identify cases of mental illness in people with intellectual disability
for whom they care”(p-182).
3. Simpson N., Creed F., Moss S.C. (1998) Screening for psychiatric disorders in adults
with learning disabilities. Conference presentation abstract, 2nd International
Conference—Medical Aspects of Mental Handicap, An Association of European
Organizations, June.
30
The purpose of this study was to validate a screening instrument (PAS-ADD Checklist)
to detect psychiatric disorders in adults with an intellectual disability. A random
sample of 25 per cent (N=93) was drawn from the register of adults using health and
social services in a metropolitan area in England. Internal consistency was good, the
main carer proving to be the most reliable informant. Correlations between the checklist
score and the severity of the psychiatric disorder were fair.
The authors concluded “the PAS-ADD is acceptable to carers and gives satisfactory
performance with a simple scoring method”(p-42).
5.3 Conclusion and Rationale for Adoption of the PAS-ADD
As can be seen from these studies, the PAS-ADD Checklist is a very recently developed
instrument, with limited research studies supporting its adoption. However, the studies
were well conducted and the results are very positive.
The addition of the life events section and the brevity of the remaining items, all
expressed in plain language, add enormously to its appeal and support its use as a
screening checklist for lay raters.
Most importantly, the PAS-ADD Checklist has substantial clinical face validity. In our
opinion, in this respect it stands head and shoulders above similar rating scales
developed in America in the 1980s.
Another point in its favour is that it doesn’t ‘pretend’ to diagnose specific psychiatric
disorders. It is designed to do one job, not several, which is to err on the side of overinclusiveness, so that all adults with an intellectual disability who need a psychiatric
review will be referred for one.
Permission to use the PAS-ADD in training sessions conducted by Caroline Mohr and
Jenny Curran was obtained from the Hester Adrian Centre, University of Manchester, in
January 1999.
Members of the focus group commented that in their opinion GPs could and would use
the PAS-ADD, and find it helpful (for detailed information about the focus group and
reference group see Curran et al 2000).
An issue that was raised for discussion in the focus group was the use of the PAS-ADD
with adults who have a severe/profound intellectual disability. If an item on the PASADD cannot be rated by the carer because the person with the intellectual disability
cannot communicate the developers suggest that the item be ‘crossed out’ by the rater,
and if three or more items are removed in this fashion it is suggested that the PAS-ADD
cannot be used as intended with this person (Simpson, Personal Communication, August
23 , 1998). Focus group members commented that they felt they would still find the
remaining items helpful in their assessment.
The research team had already examined this issue by searching the literature for any
alternatives to the PAS-ADD to use with a more disabled group. The DASH (Diagnostic
Assessment of the Severely Handicapped) Scale developed by Matson, Gardner, Coe
and Sovner was the only contender, but despite its publication in 1991, with early factor
analytic and reliability studies, no further work has been conducted on it since. Also it
was considered that in its present form it would be unsuitable for use by GPs or
frontline health professionals as it is too long and complicated.
31
32
6. The Four Key Assessment Areas in the GAP MAP
6.1 Communication
Communication between the health professional and a person with an intellectual
disability is integral to the GAP MAP because communicative skills will impact on
assessment procedures and ultimately diagnosis and management. People with an
intellectual disability may have deficits or differences in their use of verbal and/or non
verbal language which will impact on their ability to express pain or feelings that may
be indicative of a psychiatric condition or other health problem (McGrath et al. 1998).
The GAP MAP for GPs draws a distinction between action taken if the client has good
language skills (generally a mild or moderate disability) or if the client has poor
language skills (generally a severe or profound disability). There are several important
differences in assessment, diagnosis and treatment of psychiatric disorders that are
influenced by communication. People with milder disabilities and good communication
skills can be appropriately assessed using standard or slightly adapted assessment
methods, and the standard criteria for diagnosing a wide range of disorders, for
example, DSM IV will generally apply. Medication and slightly simplified
psychological therapies will work well with people who have a mild intellectual
disability. However, for those with a more severe intellectual disability more
behavioural and biological assessment strategies are needed, and standard diagnostic
criteria need to be selectively applied. In this group psychotropic medications must be
used very cautiously with experienced specialist advice and innovative non-verbal
therapies explored. In summary, those with more severe cognitive deficits and fewer
communication skills need the most specialist assessment and treatment services for
psychiatric disorders.
A mental state assessment requires that the practitioner identifies the communication
abilities of the client however this is not easily achieved, and can require extensive
testing. The ability of practitioners to roughly gauge the communication level of a client
develops over time and becomes ingrained within their practice. Experienced front line
practitioners have been found to be able to estimate the level of expressive and
receptive language of a client, to a functional degree by interacting with the client
(Purcell, Morris & McConkey 1999) but it is difficult for them to breakdown the
components of the task in order to pass on these skills to others (Schon, 1995). This
problem became evident for the current researchers who consulted with specialists in an
attempt to identify how these implicit skills are acquired and best learnt by others.
In October 1998 the Severe Communication Impairment Outreach Program (SCIOP)
section of the Victorian Spastic Society was contacted, and Ms Karen Bloomberg and Ms
Hilary Johnson, both speech pathologists, were employed to work on the
communication section of the GAP MAP.
The first meeting was held on 12 October where the SCIOP team was briefed by the
research team about the task. The SCIOP team was asked to:
a) Identify the crucial components of the task of assessing a clients communicative level
and
b) Develop these task components into an strategy that could be easily used by GPs
during a medical consultation.
33
Discussion ensued around the aim of this section of the GAP MAP, about the experience
that GPs have generally had with patients who have an intellectual disability, and time
and other constraints within the environment of a medical consultation.
Throughout the development process the research team continued to research and
clarify the significance of client communication within the GAP MAP and in training
medical and health professionals to effectively implement the GAP MAP. Discussions
and information was shared between the research team and SCIOP via telephone, email
and meetings.
In November 1998, the SCIOP team presented the Communication for Psychopathology
Assessment (Appendix 3 COMPAS). The COMPAS was designed for use by GPs. By
asking the patient a series of questions, within the setting of the consultation, the GP
could roughly gauge what communication skills the patient had. Questions were
designed to range from pointing to objects or drawings of objects which represents a
symbolic understanding of the world (Levels 1 and 2) to more abstract concepts and
verbal and reading skills (Levels 3 and 4). Accompanying the set of questions were
levels of communication that matched the ability of the patient according to their
responses. These levels were a crude representation of the possible communicative
skills of the patient. Level one and two were indicative of a mild or moderate
intellectual disability and related communication abilities, suggesting that the PASADD could be used appropriately. Levels three and four suggested the presence of a
more severe or profound intellectual disability, indicating that the PAS-ADD would not
be a useful assessment tool for these patients.
In order to evaluate the potential usefulness of the COMPASS for GPs, it was presented
to a group of GPs with expertise in developing educational packages who became the
focus group (Tang, Davis, Sullivan, & Fisher 1995). This group undertook a two-day
workshop to trial aspects of the GAP MAP. In addition a reference group of key people
in education and intellectual and psychiatric disability was formed to examine aspects
of the GAP MAP (see Curran et al 2000).
Five feedback questionnaires were completed by members of the focus group, who
attended a workshop held in December 1998. Just under half of the group did not
comment on the COMPASS. Again just under half (two participants) rated the
COMPASS as quite irrelevant and impractical. The remaining participant stated it was
quite useful but impractical and queried whether GPs would use a formal test. They
suggested that if it could somehow be used as an internal process of questioning, the
concept would become more practical.
The COMPASS instrument was discarded as a result of this feedback from the focus
group and similar feedback from the reference group. Discussion focused on the
practicality of a GP using the COMPASS during a consultation and all members
thought that it was too awkward and prescribed. It was suggested that the COMPASS
would be useful if it could be incorporated into conversation rather than as a formal
test, however this was not thought to be possible.
It was decided that a discussion and collation of ideas about communication with
people with an intellectual disability would be more useful for GPs in order to share
expertise and experience so that they could incorporate new ideas into their current
practice, rather than learn a new test that they were unlikely to use. The following
strategies to enhance communication with people with an intellectual disability during
a medical consultation were highlighted (see Curran et al 2000):
 Environment—least distracting and distressing.
 Attention–using a person’s name, speaking to them directly.
34
 Questioning—asking concrete but appropriate questions and assessing the ability of
the person to respond to questions of increasing complexity.
 Waiting—allowing enough time for people to respond, rephrasing when
appropriate.
 Responding—using an appropriate tone of voice and respectful body language, and
conveying simple information about the consultation to patients.
 Check—hearing/vision, communication aids, the possibility of a speech
assessment/therapy.
In future training sessions for GPs or other health professionals it may be appropriate to
use the Triple C Checklist of Communication Competencies recently developed by the
SCIOP team (Bloomberg & West, 1999); however this was not available during the
duration of this project.
6.2 Physical Disorders
Understanding the important inter-relationship between physical disorder and
disturbed behaviour was seen as a crucial aspect of the GAP MAP. The literature
supports the decision to emphasise this aspect of care in people with an intellectual
disability especially those presenting with disturbed behaviour. An acute onset or
worsening of disturbed behaviour should prompt an energetic search for a physical
illness (Einfeld 1996) before assumptions are made about other causative factors.
Gunsett et al. (1989) conducted one of the best and earliest studies that highlighted how
disturbed behaviour is the only method of communication that some people with an
intellectual disability have to use to convey their pain and physical distress. The clients
in the study referred for ‘behavioural programming’ displayed mainly aggressive and
self-injurious behaviour and food refusal. Medical review revealed a list of medical
disorders from which they were suffering, for example, a broken leg, toxic drug levels,
and severe infections. When these conditions were treated the disturbed behaviour
resolved completely in almost all cases.
Peine et al. (1995) in a more recent study examined the disturbed behaviour of ten
elderly people with an intellectual disability, and found that after medical treatments
there was a huge decrease in the disturbed behaviour most of them were displaying.
It is vital that the GAP MAP, which is emphasizing psychiatric causes of disturbed
behaviour, does not neglect the physical health aspects. It is of no benefit for a health
professional to over diagnose mental health problems, just as it has been of no benefit
for them to over diagnose functional/behavioural aspects. An excellent review article
by Kastner et al. (1990) describes in detail the way presentations of physical disorder
can be mistaken for a psychiatric problem by the unwary.
Training in this section will emphasize the importance of undertaking a complete
medical history and physical examination, and the desirability of obtaining
comprehensive tests and investigations to assist in diagnosis with this group who are
often unlikely to be able to describe the sensations and discomfort they are experiencing
(Kastner et al., 1990).
It is also important for medical practitioners to pursue the cause of a persons disability,
for although it is unlikely to be reversible it will inevitably provide pointers to
associated medical disorders and may also have genetic counselling implications for the
person themselves and family members (Davis, 1999).
35
6.3 Behaviour
There are many ways this component of the MAP could have been approached. There is
certainly enough known about measuring and modifying disturbed behaviour in
people with an intellectual disability. However, doing an adequate assessment of the
functional behavioural aspects of disturbed behaviour is not something that can be
taught to a GP (or anyone else) in a day, and this was only one aspect of the training.
There were many other training components to be included in the time available.
Neither is it appropriate for a generic health professional working in mental health or
intellectual disability services who is likely to be performing the initial assessment to be
expected to have this expertise, or again for this course to be able to teach it. An
assessment of the functional aspects of disturbed behaviour that may be applicable in
an individual case is a task best undertaken by a more appropriately trained clinician,
for example, a member of a Behaviour Intervention Support Team, or a psychologist
working in an Area Mental Health Service.
However there are some very important, but simpler strategies associated with
behavioural assessments which could be utilized in an initial assessment, and these
involve maximizing the reliability of information gathered about disturbed behaviour,
most often by family members or other carers. Even though the disturbed behaviour is
the prompt for the referral, it is unlikely that the people accompanying the patient to the
appointment (in the case of a GP assessment) will bring with them, or have available,
detailed information about the setting, frequency, severity and duration of the
behaviours of concern. As well they may not have good information about other
behaviours, for example, sleeping patterns, that may be important for the assessment.
So the assessing professional needs to have available to them simple but effective
strategies for gathering this information over the following weeks and months covering
the period of assessment and treatment. A decision was made to include this aspect of a
behavioural approach in the GAP MAP and highlight it during the training. Three
forms were constructed that have proved to be clinically useful, measuring aspects of
behaviour supported in the literature (Sovner & Lowry 1990). They were:
 A weight and sleep chart
 A mood chart
 An individual behaviour chart (analogue scales and tick boxes).
Copies are attached with examples of how they may be used with an individual
(Appendix 4).
6.4 Medication
Medication is a key part of a person’s internal environment that can influence behaviour
in both intended and unintended ways. Psychoactive substances are substances which
have effects on emotional, cognitive or behavioural functions, and include psychotropic
drugs which are used for their beneficial effects on emotional, cognitive or behavioural
functioning (Aman & Singh 1988). Psychotropic medications have been widely
prescribed for people with intellectual disability with disturbed behaviour, including in
Australia (Sachdev 1991). However, this practice is controversial and frequently
criticised because the evidence that these medications are effective for treatment of
disturbed behaviour is weak, and the same medications are known to produce a range
of side effects ranging from mild to life threatening (Baumeister, Todd & Sevin 1993;
Sprague & Werry 1971). Since many side effects of psychotropic medications are on
central nervous system functions, these drugs may cause emotional or cognitive
36
distress, which is frequently expressed as disturbed behaviour in a person with an
intellectual disability. Many non-psychotropic medications, such as those prescribed for
epilepsy which is common in people with an intellectual disability, can also produce
adverse behavioural effects (Ryan, Rodden & Sunada 1991).
To address the importance of medications in relation to behaviour, the GAP MAP
requires that the person’s current medication and medication history is carefully
assessed by the doctor. This information may provide a possible explanation of the
disturbed behaviour (Curran 1999). Consensus amongst experts in the field of dual
disability on the importance of reviewing medication in detail resulted in medication
issues being identified as one session in the GAP MAP training.
37
38
7. The GAP MAP for GPs and for ID/MH Professionals
7.1 GAP MAP Compilation
The GAP MAP guidelines are depicted in text and images resembling a flow diagram. A
balance between simplicity and complexity was sought, as Rush (1993) stated, “a useful
guideline must walk a fine line between excessive specificity (e.g. a step-by-step recipe
to be followed in every case) and excessive generality” (p- 485).
The first GAP MAP to be compiled was the one for GPs. The following parameters were
incorporated into its development:
 The GAP MAP would be able to be used by a solo medical practitioner with a small
amount of training.
 It would be able to be followed in two 20 minute appointments.
 It would contain both a screening instrument for psychopathology in people with an
intellectual disability and behaviour recording strategies to increase the reliability of
information gathered about the person.
 It would incorporate as much as was practically possible from published guidelines.
 It would prompt GPs to consider a range of referral options.
7.2 GAP MAP for GPs
Stages one, two and three of the GAP MAP for GPs can be found at Appendix 5.
7.2.1 Stage One
Stage One commences with the referral to a GP of an adult with an intellectual disability
for the assessment of what may turn out to be disturbed behaviour.
The initial direction is to comprehensively describe the behaviour considering a range
of parameters, and to gather this information by:
 Personal observation
 Skilled enquiry to the carer network
 Questions to the patient.
(Later the GP is taught to use some very straightforward behaviour recording forms to
assist with this task).
The second step is to ensure the safety of the patient and others as far as possible. A
range of prompts for action to help ensure safety are provided in Stage Two.
The remainder of this stage is devoted to further examinations and investigations in
different forms, and include the PAS-ADD and information collection strategies. This is
divided into two columns as a visible reminder for the GP to consider the differences
that IQ range and communication ability make to the assessment process.
39
7.2.2 Stage Two
Stage Two, located between appointment one and two, provides some important points
to be thought through. As previously mentioned in Stage One, there are prompts for
considering safety issues, and a reminder that the disturbed behaviour could be a
transient problem temporarily related to life events that will have been reported on the
Life Events Checklist on the PAS-ADD. The box ‘No, behaviour is not disturbed’
branches into the points made by Sturmey (1995) about the agendas of carers, with the
additional point to consider about sexual behaviour. Intervention strategies with carers
are included (education and stress management).
7.2.3 Stage Three
Stage Three may commence with the second appointment, a few days (or a week or two
at the most) after the first, when pathology tests have been organised, past reports
located, the PAS-ADD completed and some information collected about weight, sleep
and behaviour. A review of all this information is suggested before entering the ‘merrygo-round’ of diagnosis, referral and management, and ongoing monitoring. This is not
new information but a prompt for the GP to revert to ‘first principles’ and best practice.
Its more unfamiliar contribution is in the range of referral options provided (in the
Victorian context), a more comprehensive list than may have initially been considered,
and timely reminder to use mental health referral choices.
7.3 The GAP MAP for ID/MH Professionals
The second GAP MAP, and the final one for this project, was constructed to be used by
intellectual disability and mental health professionals, who could be nurses,
psychologists or other allied health trained. Similar parameters were incorporated into
its development as for the GP GAP MAP, and all the essential elements were retained in
a slightly different format. Stages One, Two and Three of the GAP MAP for ID/MH
professionals can be seen at Appendix 6.
7.3.1 Stage One
Stage One commences with the same enquiry about the disturbed behaviour, with
prompts to seek a description of it that is as exact as possible, before addressing safety
issues, the concerns of carers and the role of life events that may have occurred recently.
7.3.2 Stage Two
Because this GAP MAP was not written for medical practitioners, Stage Two had to
incorporate prompts to the ID/MH professional to seek or ensure a comprehensive
medical examination and review for their client, whilst they took on the tasks that
remained. Because two people are now involved in the assessment, a reminder to
communicate with each other is included. The reflective task of reviewing the
information gathered concludes this section.
On this GAP MAP the division between different levels of disability was not
maintained, as the appearance would have become too confusing, but training still
included the information about differences in presentation, diagnosis and treatment
that this group of professionals would need to know.
7.3.3 Stage Three
Stage Three of this GAP MAP is essentially the same as Stage Three of the GP GAP
MAP, containing the same prompts for referral and persistence.
40
7.4 Focus Group Evaluation of the GAP MAP
7.4.1 Focus Group Workshop
To evaluate the relevance and practicality of the GAP MAP and its components for GPs,
a focus group was invited to provide comment on the GAP MAP (Tang et al. 1995). In
October 1998, five GPs, one medical researcher and one GP from the Department of
Community Medicine and General Practice at Monash University, two GPs from the
CDDHV and one GP from the Royal Australian College of General Practitioners
(RACGP), were invited to participate in the focus group by way of a workshop in
December 1998. The workshops for the focus group was conducted at the CDDHV, on
Tuesday 8 December from 9am to 12pm and Friday 11 December from 2.00 pm to 5.00
pm.
The following people attended the focus group workshop on 8 December.
 Two GPs with extensive educational experience from the CDDHV.
 One speech pathologist, specializing in augmented communication.
 One GP from the Department of Community Medicine and General Practice, Monash
University.
 The research team.
On the 11 December the following people attended the focus group workshop:
 Two GPs from the Department of Community Medicine and General Practice,
Monash University.
 One medical researcher experienced in medical curricula design from the
Department of Community Medicine and General Practice, Monash University.
 Three GPs from the CDDHV.
 The research team.
7.4.2 Workshop Content
As an introduction Dr J. Curran explained the background and rationale of the
development of the GAP MAP (Project 1) and the training. Discussion then revolved
around the role of the focus group, the research teams’ expectations for feedback about
the training content, method of delivery and usefulness to GPs. Topics examined were
the GAP MAP and its relevance and practicality for GPs, rationale for, and use of the
PAS-ADD Checklist and the COMPASS. Other topics examined were, teaching
communication techniques to GPs, the Sequential Management Problems (SMPs:
Section 6.2 of Project 2, Curran et al 2000) as an assessment tool and data collection as a
strategy for monitoring behaviour.
7.4.3 Results of Focus Group Workshop
A total of five feedback questionnaires (Appendix 7) were completed by members of the
focus group who attended the last day of the workshop.
Four out of five rated the GAP MAP as useful, relevant and practical for GPs to use. The
remaining participant rated the GAP MAP as somewhat irrelevant and impractical and
somewhat useful.
41
Two out of five did not comment on the COMPASS. A further two out of five rated the
COMPASS as quite irrelevant, impractical and not useful. The remaining participant
stated it was quite relevant but impractical and queried whether GPs would use a
formal test. It was suggested that if it could be used as an internal process of
questioning it may be more useful for GPs.
All participants (5 out of 5) stated the PAS-ADD was useful, relevant and practical for
GPs.
Overall participants stated that the content of the course, which reflected components of
the GAP MAP, would be likely and very likely to give GPs an understanding of the
importance of:
 Assessing communication skills — (4 out of 5, one did not answer)
 Obtaining an adequate history of changes in behaviour — (4 out of 5)
 Considering a possible medical diagnosis—(5 out of 5)
 Considering a possible psychiatric diagnosis—(4 out of 5, one did not answer)
 Considering various behavioural mechanisms—(2 out of 5, one did not answer and
the pre-pilot did not focus on this aspect)
 Using a rating scale, for example, PAS-ADD—(5 out of 5)
 Using data collection charts—(4 out of 5).
In addition, participants rated the following as likely and most likely to occur as a result
of the course:
 Improve GP assessments —(5 out of 5)
 Increase GP confidence —(5 out of 5)
 Increase GP knowledge —(5 out of 5)
 Improve GP decision making and referrals —(4 out of 5)
 Inform GPs about available services —(1 out of 5, one did not answer and the
workshop did not focus on this aspect)
 Encourage a GP to see more patients with an intellectual disability —(2 out of 5, one
did not answer)
 Most likely to not discourage a GP from seeing more patients with an intellectual
disability —(5 out of 5)
7.4.4 Outcomes from the Workshop
The COMPASS instrument was discarded as a result of feedback from the focus group
and feedback from the reference group, while the PAS-ADD and the case study used to
teach it, were retained as useful for training in dual disability assessment.
The PAS-ADD was considered useful even if incomplete because it can act as a trigger
and lead the GP to ask specific questions in relation to the psychiatric presentation of
symptoms, and it can act as an alert to the behaviours that have been remarked on. The
GPs found the case study (Bouras & Holt 1997) useful to learn about the PAS-ADD and
stated they would use the PAS-ADD in their practice.
42
The GAP MAP was applauded and discussion ensued to its presentation for ease of use.
A flow chart was considered the most useful particularly as flow charts were commonly
used as a method of learning for undergraduate medical students and doctors are used
to information presented in this way.
The concept of data collection was totally new to the members of the focus group yet
they reported it to be a useful strategy and emphasised that because it is foreign to GPs
teaching must include why data collection is needed.
43
44
8. Additional Resources for GAP MAP Dissemination
8.1 GAP MAP Game
At one stage a draft monopoly style ‘Board Game’ was constructed as an aid to GAP
MAP teaching, containing a hundred or more questions for game participants to answer
on their way around the board to the winning square. However, as the training
timetables were constructed it became obvious that there would be insufficient time to
include an activity such as this, which would be essentially a fun way to review the
teaching content with the course participants. It was considered that using the available
time to discuss case material would probably be a more memorable way for the
participants to achieve the same goals of review, with the added advantage of
application to a real life example.
8.2 GAP MAP Pamphlet
A three-fold pamphlet containing the GAP MAP was constructed for each of the two
training sessions and included in the participant folder of materials. This user-friendly
depiction of the essential elements of the process was included so participants would
have a summary to unobtrusively ‘carry with them’ into a clinical setting.
8.3 GAP MAP Folders
Participant folders contained the lecture material, including copies of the GAP MAP
process, with room alongside for their own notes made during the workshop as a
memory aid (for full training details see Curran et al 2000).
8.4 GAP MAP Video
An outline of the rationale for the video and its proposed script are attached (Appendix
8). Devoting time to the video construction and making the contacts in the media
industry that were required to see a project such as this happen was left until the end of
the project when the training sessions were completed a clearer idea had emerged of
what the video could achieve.
A short video that could be used to introduce the GAP MAP either during training
sessions or as an encouragement for groups to undertake this training was decided on,
with a secondary aim of informing an audience of the importance of considering the
mental health of people with an intellectual disability in service provision.
This video is now in production with the assistance of the Educational Resource Centre,
Women’s and Children’s Health Care Network and is scheduled to be completed in
August, 1999.
45
46
9. Evaluation of the GAP MAP by GPs and ID/MH Professionals
A full description of the GAP MAP teaching program can be found in Final Report 2
and the GP evaluation questionnaire is at Appendix 9 of the current report.
9.1 Course Evaluation by GPs
Overall the vast majority of GPs stated that the course was very useful “I learned so
much but did not suffer from information overload”.
Nine out of the ten GPs rated the course as highly successful (rating of 5 out of 5) in
meeting their course objectives, in providing valuable information and stated that the
presentations were of high quality. The other GP rated these criteria as a 4 out of 5,
which is still a high rating.
The most useful sessions within the course were reported to be the sessions entitled
Communication (4 out of 10 GPs), ‘Psychiatric Perspectives’ (3 out of 10 GPs) and
‘Maximising Information Reliability’ and ‘Behavioural Perspectives’ were also listed.
Two GPs would have liked to have been given more information on Victorian
Resources, and a further two GPs found the session on the Internet was not that relevant
to them because they did not have these resources at their work or home.
All ten GPs stated that they would recommend this course to other GPs with one
commenting that he was “relieved to have finally learnt something about intellectual
disability”.
Consideration of this information by the research team has resulted in the following
possibilities for further courses:
a) To keep the Communication session as a session that revolves around discussion of
past experiences and practices of the GPs and trainers because it was highly valued
and considered to influence use of the GAP MAP.
b) After using the GAP MAP, GPs identified the need for a pool of other specialists,
experienced with patients who have an intellectual disability, who they can refer
patients to. It is possible that a list of specialists who are competent and comfortable
in treating patients with an intellectual disability could be provided to future
training participants. Consideration must also be given to not overloading certain
specialists, and the risk of denying specialists without such experience the chance to
develop skills through experience with patients who have an intellectual disability.
Specialist organisations may be listed rather than individual medical professionals
and people encouraged to use community specialists.
c) The evaluation questionnaire could be improved by asking the GPs specifically what
it was they did, or didn’t like about a particular session in order to get a better
understanding of what aspects need to be revised in the GAP MAP and its related
training.
9.2 Course Evaluation by ID/MH Professionals
A total of 16 MH and ID participants completed a course evaluation form (Appendix 10).
All participants reported they would recommend the training to other workers because of
the knowledge and skills they learnt in relation to dual disability. Using a Likert Scale (15) the course achieved a mean score of 4.5 for providing information that was easily
47
understood, with participants rating an average of 4.75 for how highly they valued the
GAP MAP information. Similarly, the presentation quality was rated at a mean level of
4.8. Overall participants thought the course, which revolved around the GAP MAP, was
very successful in meeting their objectives.
The third day of training where the local service system was examined, was reported as
the most useful by one quarter of respondents, because local issues were identified and
discussed. Participants equally found the opportunities to network extremely valuable
including the session about the ‘other service’ where they learnt the language used by the
other service, and the work group activities. The case study homework was reported as
most successful by three of the 16 participants because it consolidated all the knowledge
they had gained from the previous two days training. Other sessions that were reported
as useful were basic information on the presentation of psychiatric symptoms, learning to
use the PAS-ADD, data collection strategies and Psychotropic Medication.
Most respondents indicated that there were no areas of training, or the GAP MAP, that
should have been included that were not, with all responses indicating that none of the
sessions were unnecessary. Between them, three respondents stated that they would have
liked to do more case studies, have learnt more about mental health issues and learnt
specifically about the current referral process of each service.
48
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54
Appendices
Appendix 1 - Research Protocol for Project 1
Aims:
The GAP (Global Assessment of Psychopathology in people with intellectual disability
and possible or definite mental illness) MAP (Management of the Assessment Process)
Project will develop a clinical protocol (i.e. guidelines based on a combination of clinical
best practice and suitable instruments) which aims to improve the health outcome for
people with an intellectual disability and possible or definite mental health problems
when they attend a health provider.
Objective:
Development of the GAP MAP to improve GP and other mental health service
providers skills in assessment of possible dual disability
The GAP MAP will provide guidance on the steps needed in an assessment of a person
with developmental disability who may have a mental illness by indicating the
likelihood of mental illness in an adult with an ID. When the GAP MAP is applied by a
GP or other mental health service provider it will improve the process of differential
diagnosis in people with developmental disability who present with disturbed
behaviour. This will be achieved by providing a more informed basis for clinical
decision-making, and help rationalize the referral process.
GPs and mental health professionals will be the primary users of the GAP MAP.
However, providers of services for people with intellectual disability, particularly Case
Managers in the Disability branch of the Victorian DHS responsible for intellectually
disabled clients with definite or possible mental illness will have opportunities to be
trained in the use of the GAP MAP protocol through Project Two so that they will have
an understanding of how they can support the GP and mental health professionals in
carrying out an assessment of the appropriateness of psychiatric referral (or referral to
other disciplines and agencies).
Method: Project Stages 1-4
Stages of the project are as follows:
Stage 1
1.1 Review of psychopathology screening tools for adults with dual
disability and choice of instruments to include in the GAP MAP (current
contenders are PIMRA, Reiss Screen, PAS-ADD Checklist and Adult DBC
based on inter-rater reliability, validity and suitability of each screen.
1.2 The items of the Adult DBC-P will also be reviewed at this stage to
ensure that all behavioural disturbance encountered in practice is present in
this instrument.
1.3 Decision as to which screen to use in the GAP MAP
Stage 2
Development of the other four key assessments needed in the GAP MAP, which are:
55
2.1 Developmental level including communication status (i.e. assessment of
the person and the various communication environments which exist) and
social-emotional profile
2.2 Physical disorders especially epilepsy, autism, sensory impairments,
specific syndrome associated physical disorders e.g. hypothyroidism in
people with Down syndrome, and behavioural phenotype e.g. social
anxiety in people with Fragile X Syndrome.
2.3 “Behavioural” aspects i.e. behaviours which are learned and/or
maintained by environmental reinforcement or are due to behavioural
phenotype.
2.4 Medication aspects including principles of rational prescribing.
Stage 3
3.1 Assembly of the 5 elements of the GAP MAP into an instructional
format.
3.2 Pilot the GAP MAP with groups of GPs (This process is linked with
Project Two).
3.3 Pilot studies of use of GAP MAP with mental health professionals (This
process is linked with Project 2)
Pilot studies will include evaluation of ease of use and validity studies of the
psychopathology screen section. Validity studies will include a content validity study
and 2 separate concurrent validity studies. Methodology and timelines for these studies
are attached
Stage 4
4.1 Final assembly of the GAP MAP
4.2 Distribution activities, which will include the GAP MAP being
embedded in the dual disability training, described in Project 2 (Curran et
al 2000).
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Appendix 2 - PAS-ADD Checklist - Hester Adrian Research Centre (1993)
Appendix 5
PAS ADD Checklist
Hester Adrian Research Centre (1993)
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58
59
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Appendix 3 - Communication for Psychopathology Assessment
(COMPASS)
Authors: K. Bloomberg & H. Johnson, Severe Communication Outreach Program;
Spastic Society
A Screening Tool to Assess Cognitive Function
The assessor will need 4 levels of representation of items commonly found in a doctor’s
surgery. Begin at level 5 and continue to level 1, or until patient cannot carry out
instructions.
Level 1:
The individual will be asked to read the following words
(indicative of a mild ID)
stethoscope
tissue
paper
cup
Level 2:
The individual will be asked to point/look at the words as they are said
randomly (indicative of a mild/moderate ID)
Give time to allow the individual to respond. Have a clear
understanding of what the individual is using as his/her response eg:
finger
pointing, eye pointing, fist pointing, yes/no confirmation.
Level 3:
The individual will be asked to point to line drawings for the above items.
(indicative of a mild/moderate ID)
Level 4:
The individual will be asked to look at/give the actual objects.
(indicative of a moderate/severe ID)
Level 5
The individual is unable to comply with any of the requests.(indicative of a
severe/profound ID)
Communication Skills and Abilities
MILD
Speech may range from easy to understand to no functional speech
Yes/no responses should be reliable. May need to find out how the person indicates
yes/no.
61
Receptive Strategies:
Keep information jargon free. Use short, simple sentences.
Expressive Strategies:
Speech alone
Speech plus augmentative strategies
Augmentative strategies as primary means
Strategies include:
Communication aid eg: VOCA – Voice Output Communication Aid,
Non tech aid eg: Communication board, book, wallet.
Display on aid eg: spelling words, line drawings
Use of unaided strategies, eg: finger spelling, signing, gesture, mime, body language,
facial expression.
Seek permission from the individual if further information can be offered by the carer.
MODERATE
Speech may range from simple functional speech to non functional speech.
Yes/no responses may be reliable for concrete information eg: identification of common
objects. May need to find out how the person indicates yes/no.
Receptive Strategies:
Keep information jargon free. Use short, simple sentences. Supplement speech with
use of visual cues, eg: pictures, objects gestures.
Expressive Strategies:
Speech alone
Speech and augmentative strategies
Augmentative strategies as primary means
Strategies include;
Communication aid eg: VOCA – Voice Output Communication Aid,
Non tech aid eg: Communication board, book, wallet.
Display on aid eg: words, line drawings, logos, photos
Use of unaided strategies, eg: simple signing, gesture, body language, facial expression.
Seek permission as carer may have more information than individual can give.
SEVERE/PROFOUND
Speech may not be used functionally. Single words, phrases eg: mum, girl, cup of tea.
Yes/no responses not reliable.
Receptive Strategies:
62
Do not assume the individual can understand speech. Supplement speech with the use
of visual cues, eg: gestures, objects.
Expressive Strategies:
Single words and phrases may not be used functionally.
Vocalisation
Use of simple augmentative strategies.
Strategies include;
No formal augmentative system
May be able to make choices at object level. May have signals/signs
eg: toilet, drink. Are more reliant on communication partner
interpreting his/her behaviour.
Rely on carer as the main source of information.
63
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DAYS

5.9.99
4.9.99
3.9.99
2.9.99
1.9.99

31.8.99
30.8.99
29.8.99
28.8.99
68
27.8.99
26.8.99
25.8.99
24.8.99
23.8.99
22.8.99
Select range – person specific (kilos)
69
21.8.99
20.8.99
Number of continuous hours sleep
from 8 pm - 8am
Appendix 4 - Charts
Weight and Sleep Chart
Name: _______________________Starting Date: __________________
72
71
70

67

66
65
64
63
62
61
60
10
10
9
9
8
8
7
7
6
6
5
5
4
4
3
3
2
2
1
1
0
0
65
Mood Chart
Name________________________
Starting Date______________
Laughing
alot
+2


Talking
alot
+1






Calm

0




Quiet &
sad looking

-1
Crying a lot
66
13.2.99
12.2.99
11.2.99
10.2.99
9.2.99
8.2.99
7.2.99
6.2.99
5.2.99
4.2.99
3.2.99
2.2.99
DAYS
1.2.99
-2
Individual Behaviour Chart
Name:_________________
Date: _______________________
Tick each box that applies

_____
Incontinent

______ Ran away

Multiple showers
Circle a number
0
1
2
3
4
5
_______________________________
calm
pacing
0
1
2
3
4
5
_______________________________
quiet
talkative
0
1
2
3
4
5
_______________________________
polite
swearing
As above - ADD PERSON SPECIFIC DESCRIPTIONS OF BEHAVIOUR
67
Appendix 5 – GAP MAP for GPs
GAP MAP for GPs - Stage 1
1st APPOINTMENT
Person with ID and ? Disturbed Behaviour
frequency
Description of the behaviour
duration
setting
severity
Safety concerns
yes , act now
options
Developmental level
mild disability
severe disability
* medical history
* medication
* social/family
* examination
* order tests
* data
* request past reports
* medical history
* medication
* social/family
* examination
* order tests
* PASADD/data
* request past reports
TREAT IF INDICATED
68
GAP MAP for GPs - Stage 2
Is the behaviour disturbed?
No, the behavour is not disturbed
Educate carer
Yes, or not sure
There are safety issues
Developmentally normal
Referral (CAT, IDS, Police)
Carer misconception
Plan with carers
Normal Sexual Development
Temporary sedation
Stress management Stressed carer
for carer
Containment
Could it be a transient problem?
YES
Protect
Support the person and their carer
69
GAP MAP for GPs - Stage 3
2nd Appointment
mild disability
* review typology
* review safety
* review reports
* review tests
* review PASADD
* review data
severe disability
* review typology
* review safety
* review reports
* review tests
* review data
Differential
Diagnosis
CDDHV
DENTAL
MEDICAL
SENSORY
Management and
Referral
….SPEECH
AREA MENTAL
HEALTH
IDS/BIST
PSYCHIATRIST
VDDS
70
Monitor and
Reassess
Appendix 6 - GAP MAP for ID/MH
GAP MAP for ID/MH - Stage 1
Adult with an ID and ? Disturbed Behaviour
frequency
severity
setting
duration
Description
Behaviour is not disturbed
Need to address safety
Carer misconception
Educate
carer
Containment
Developmentally normal
Referral
Normal sexual dev
Plan with carers
Stressed carer
Stress
management
Sedation
Could it be a transient problem?
Protect
YES
Support the person and their carer
71
GAP MAP for ID/MH - Stage 2
Person with ID & Disturbed Behaviour
Medical Review
Concurrent Assessment
* Past reports
* PASADD
* Data collection
* Social/Family
* Medical History
* Physical Examination
* Medication Review
* Test & Investigations
Communicating
information
REVIEW
* Behaviour description
* Tests and investigations
* PASADD and data
* Safety
72
GAP MAP ID/MH - Stage 3
Differential
Diagnosis
……….CDDHV
…..DENTAL
..MEDICAL
SENSORY
Management and
Referral
Monitor and Reassess
…..SPEECH
PSYCHIATRIST
….
IDS/BIST
VDDS
73
Appendix 7 - Focus Group Workshop, Feedback Questionnaire (not published)
Appendix 8 - Video Program Proposal Checklist (not published)
Appendix 9 - GP Evaluation of GAP MAP Training (not published)
Appendix 10 - ID/MH Evaluation of GAP MAP Training (not published)
Note: Please contact the CDDHV for copies of appendices that weren’t published.
74