Senior Practitioner – Disability
Building capacity to assist adult dual disability
clients access effective mental health services
October 2013
Report by Dr Danny Sullivan, Terri Roberton, Dr Michael Daffern
and Dr Stuart Thomas
i
Department of Human Services
Building Capacity to Assist Adult Dual Disability Clients Access Effective Mental
Health Services
A report prepared for the Senior Practitioner – Disability by: Dr Danny Sullivan, Terri Roberton,
Dr Michael Daffern and Dr Stuart Thomas Centre for Forensic Behavioural Science, School of
Psychology & Psychiatry, Monash University, Australia.
Front cover: painting by Leanne Butt, winner of Having a Say Conference Art Prize (2011) –
Theme “Dignity”
Accessibility
If you would like to receive this publication in an accessible format, such as large
print or audio, please telephone (03) 9096 8427, 133 677 (TTY), or email
seniorpractitioner@dhs.vic.gov.au
This document is also available in PDF format on the internet at
www.dhs.vic.gov.au/ds/osp
© Copyright, State of Victoria, Department of Human Services, 2013
Published by the Senior Practitioner – Disability, Victorian Government,
Department of Human Services, Melbourne, Victoria.
Authorised by the State Government of Victoria, 50 Lonsdale Street, Melbourne.
This publication is copyright, no part may be reproduced by any process except in accordance with
the provisions of the Copyright Act 1968.
October 2013
Contents
Foreword ............................................................................................................................................1
1. Introduction....................................................................................................................................2
2. Issues for people with intellectual disability (ID) accessing mental health services ............3
3. Current service models ................................................................................................................6
3.1 Provision through general or specialist services? .........................................................................6
3.2 Service Models ..............................................................................................................................8
4. Core components of service provision .....................................................................................15
4.1 Provision for assessment, treatment and continuing care ..........................................................15
4.2 Inpatient and outpatient services ................................................................................................15
4.3 Consultation services ..................................................................................................................16
4.4 Crisis intervention and out-of-hours services ..............................................................................17
4.5 Specially trained staff ..................................................................................................................17
4.6 Service provision by a multidisciplinary team ..............................................................................17
4.7 Specialist assessment and treatment resources.........................................................................18
4.8 Strong, collaborative relationships between service providers ...................................................18
4.9 Client-centred, inclusive approach ..............................................................................................19
4.10 Education and training...............................................................................................................19
4.11 Links to academic research centres ..........................................................................................20
5. Stakeholder consultation ...........................................................................................................21
5.1 Eligibility for services ...................................................................................................................21
5.2 Services offered by stakeholders ................................................................................................22
5.3 Area Mental Health Service skills ................................................................................................23
5.4 Underpinning values ....................................................................................................................23
5.5 The role of private practitioners ...................................................................................................23
5.6 Inpatient settings .........................................................................................................................24
5.7 Visions of an effective service model ..........................................................................................24
5.8 Conclusions of stakeholder consultation .....................................................................................25
6. Service providers with expertise in dual disability ..................................................................26
7. Current evidence base for intellectual disability psychiatry ..................................................27
A contemporary reference list for intellectual disability psychiatry: ...................................................27
8. Moving forward in Victoria .........................................................................................................29
References .......................................................................................................................................30
Foreword
In 2010 the Senior Practitioner – Disability commissioned a report, ‘Disability, mental health and
medication: Implications for practice and policy’. This report highlighted the complexities of mental
health assessment for people with an intellectual disability,
In Victoria, area mental health services carry the primary responsibility for the assessment and
treatment of people with mental health problems, including those with a dual disability. Incumbent
in this role are the requirements for involuntary treatment under the Mental Health Act (1986)
surrounding presentations of harm to self or others that often results in mental health services
being required to address challenging behaviour or self-injurious behaviour in people with
intellectual disabilities.
Staff in general mental health settings however routinely report a lack of confidence, skills and
training in working with these populations. They also experience frustration in having to manage
people with an intellectual disability in inpatient settings and are often in conflict with disability
service providers around roles and responsibilities for treatment and care.
Within this context the aim of this study is to determine models of best practice internationally and
to consider the benefits and challenges associated with the implementation of such practices within
Victoria. It is anticipated that this initial study will provide a basis from which to develop and trial
service development interventions to enhance the capacity of area mental health services to
manage dual disability clients.
I would like to thank the team of researchers led by Dr Danny Sullivan and the key stakeholders
who provided feedback to the team on their service and practice experience. Finally I would like to
thank the Disability/Mental Health reference group who provided insight, guidance and expertise at
key points of the project.
Thankyou.
Dr Frank Lambrick
Acting Senior Practitioner – Disability
Office of Professional Practice
Department of Human Services
Building capacity to assist adult dual disability clients access effective mental health services
1
1. Introduction
In Australia, methodologically robust studies have demonstrated a prevalence of mental illness in
people with intellectual disability which approaches 1 in 3 (Morgan et al., 2008). c.f. Whiteet al.,
2005). International studies also suggest a markedly elevated prevalence of comorbidity (Cooper &
van der Speck, 2009). However, despite the high prevalence of mental health issues, adults with
dual disability (intellectual disability and mental illness) have been shown to access mental health
services proportionately less than people in the general population (Gustafsson, 1997). Recent
estimates suggest that only 10% of adults with dual disability have received mental health
intervention, compared with 35% of general community members experiencing mental health
problems (National & NSW Councils for Intellectual Disability & Australian Association of
Developmental Disability Medicine, 2011).
It is widely recognised that adults with intellectual disability face a variety of difficulties when
accessing mental health services (Chan, Hudson, & Vulic, 2004). When they are able to access
services, Australians with dual disability are generally thought to receive a poor standard of care
from mental health services (Edwards, Lennox, & White, 2007; Lennox & Chaplin, 1995, 1996).
Recently, Bennet (2008) produced a review of services available for people with a dual disability.
This review revealed several deficiencies in existing systems that prevented optimal care for
people with a dual disability. This is reflected in the attitudes of Australian psychiatrists, who tend to
believe that adults with dual disability receive a poor standard of care in both community and
inpatient mental health settings (Edwards, et al., 2007; Lennox & Chaplin, 1995, 1996; Torr et al.,
2008).
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Building capacity to assist adult dual disability clients access effective mental health services
2. Issues for people with intellectual
disability (ID) accessing mental health
services
Several factors are thought to underpin the poor services provided to adults with intellectual
disability, including those related to the complex clinical presentation of dual disability, as well as
systemic deficits with mental health service provision for this population.
2.1. Difficulties arising from clinical presentation
First, adults with intellectual disability are less likely to seek help for symptoms of mental illness
(Hudson & Chan, 2002). The reasons for reduced presentations are complex and multifaceted and
include a reduced tendency to complain (Moss, 1999), a general fear of medical personnel, and
low expectations of these services (Clark, 2007). Furthermore structural barriers and reduced
independence may impede the capacity to access services, along with communication difficulties.
Together, these characteristics mean that adults with intellectual disability (ID) tend to be referred
to mental health services by a carer rather than being self-referred (Hudson & Chan, 2002).
However, a lack of knowledge of mental illness symptoms (Borthwick-Duffy & Eyman, 1990),
coupled with negative attitudes held towards mental health services (Oliver, Leimkuhl, & Smillman,
2003), means that caregivers may also be less likely to refer to mental health services.
Second, symptoms of mental illness often present differently in adults with ID and, as such, can be
hard to recognise, assess and diagnose correctly (Royal College of Psychiatrists, 2001). One UK
study interviewed ten mental health staff with regards to the quality and accessibility of mental
health services for adults with ID. Staff in this study believed that difficulty identifying a mental
health problem in an individual with ID was largely responsible for the poor uptake of services
(George, Pope, Watkins, & O’Brien, 2011). Assessment and diagnostic processes are complicated
further two difficulties which are more prevalent in ID: problems with communication and
challenging behaviours.
Problems with receptive and expressive communication are among the most characteristic and
marked challenges facing people with ID (Flynn & Gravestock, 2010). Differences in the use of
verbal and/or non-verbal language will impact on an individual’s ability to express pain or emotions
(Curran, Mohr, Phillips, Cook, & Davis, 2000). Not only do these difficulties often mask clinical
presentations of mental illness (Chan, et al., 2004), they may also hinder assessment processes
such as diagnostic screening interviews. Adults with milder ID, for example, may give an
impression of understanding and competence that exceeds their true abilities because of
discrepancies between expressive and receptive language abilities (Flynn & Gravestock, 2010).
Further, adults with mild ID have also been found to demonstrate increased acquiescence and
suggestibility in certain interview situations (Flynn & Gravestock, 2010; Fraser & Nolan, 1995).
Understanding of an individual’s communication skills is required to inform the assessment and
treatment of mental health issues in an individual with intellectual disability (Curran, et al., 2000).
The presence of challenging behaviours such as aggression, destruction of property and self-injury
also has the potential to overshadow diagnosis and assessment processes (Bamburg, Holloway,
Crafton, & Clifton, 2003; M. J. White et al., 1995). Mental health practitioners may see these
behaviours as resulting from the ID rather than as symptomatic of mental illness (Chan, et al.,
Building capacity to assist adult dual disability clients access effective mental health services
3
2004; George, et al., 2011). In Australia, public mental health services rarely provide services for
people with problem behaviours in the absence of severe mental illness (Chan, et al., 2004).
Therefore, if an individual’s behaviour is deemed to result from the ID rather than mental illness,
they can have great difficulty accessing mental health services. One Australian study looked at two
case studies which illustrated the difficulty of an adult with dual disability accessing general mental
health services (Chan, et al., 2004). In both cases referrals made by the disability service to the
mental health service were unsuccessful on the basis that the challenging behaviours were thought
to be unrelated to the individual’s mental illness. However, in neither case was a mental health
assessment or review undertaken prior to the referral being denied.
2.2. Difficulties arising from service deficits
Complications arising from the unique clinical presentations of individuals with dual disability are, of
course, intertwined with a variety of systemic service deficits which also contribute to substandard
mental health service provision.
Arguably the most prominent barrier in the provision of good quality mental health services for
adults with dual disability is the demarcation between mental health and disability services
(Bennett, 2008; E. Chaplin, Paschos, & O’Hara, 2010; E. Davis, Barnhill, & Saeed, 2008; Mohr,
2000). Historically, intellectual disability services and mental health services either developed
separately (Dart, Gapen, & Morris, 2002), or were looked after in separate institutions. For many
years, both mental illness and intellectual disability were seen in the context of a medical model of
disability, where disability was seen as a health problem requiring sustained medical care provided
by professionals (Marks, 1997). However, around the 1980s there began a shift towards viewing
intellectual disability in the context of a social/community model of disability, which instead saw
disability as a socially constructed problem requiring a range of social-environmental approaches.
Alongside this shift, effective treatments for psychiatric disorders were developed and individuals
with mental illness were understood to benefit from therapeutic interventions.
This differentiation, coupled with the belief that people with intellectual disability were incapable of
developing mental illnesses, led to the conviction that people with intellectual disability and people
with psychiatric disorders required separate approaches and, consequently, separate services.
(Bennett, 2008). In Australia, policy development around this time oversaw this separation, and no
legislative provisions were made for individuals needing both services (Evans et al., 2012).
Currently, mental health and ID services tend to have competing paradigms which manifest in
philosophical, operational and systems differences (E. Chaplin, Paschos, & O’Hara, 2010). Not
only does this create confusion over issues of clinical and financial responsibility, but ultimately
impacts on the quality and accessibility of each of these services (George, et al., 2011; Patterson,
Higgins, & Dyck, 1995). For example, Bouras and colleagues stated that: “the recommendation of
developing local services within the ‘mainstream services’ has been interpreted by both [intellectual
disability] and mental health services as implying that the other party has responsibility for
developing ‘challenging behaviour’ services” (1995, p. 136). In Australia, this is thought to have
been partially reinforced by the fact that ID services provide some internal teams that deal with
behavioural problems (Bennett, 2008). The impact of this demarcation is clearly felt by staff
working with this population. Scior and Grierson (2004) interviewed people working with young
people with dual disability and found that breakdowns in inter-agency communication and lack of
information sharing between different services were themes which emerged strongly throughout all
interviews. Similarly, George and colleagues (2011) found that staff across both mental health and
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Building capacity to assist adult dual disability clients access effective mental health services
ID services found it difficult to understand the scope and remit of each others’ services, and that
they often felt they needed to be assertive and demanding in order to access each other’s services.
A second important service barrier is a lack of specialist knowledge and training in dual disability,
across both mental health and ID services (Bouras, Kon, & Drummond, 1993; Werner & Stawski,
2012). The number of clinicians specialising in both ID and mental health is generally thought to be
inadequate in Australia (Evans, et al., 2012). Most staff develop skills in the field of either mental
health or intellectual disability, but not both (Bennett, 2008). Werner and Stawski (2012) recently
reviewed 27 international studies that examined the knowledge, attitudes and training of
psychiatrists and other professional caregivers with regards to dual disability. These studies
demonstrated that professionals working in ID services generally demonstrate a low level of mental
illness symptom knowledge. Conversely, many mental health professionals agreed that they did
not receive sufficient training to adequately assess and manage adults with dual disability (c.f. R.
Chaplin, 2004; Jess et al., 2008). In sum, the authors concluded that there is currently a lack of
training and experience amongst professionals working with people with dual disability. This lack of
experience may be a self-perpetuating cycle whereby professionals avoid working with this
population, leading to a smaller body of specialised knowledge and continued poor training for the
next generation of professionals (Werner & Stawski, 2012). Adequate ongoing training and
practical experience with regards to mental illness diagnosis and treatment in individuals with ID
have therefore been identified as one of the key components of effective service delivery for this
population (Davidson & O’Hara, 2007; R. W. Davis, 2011).
Building capacity to assist adult dual disability clients access effective mental health services
5
3. Current service models
There is no best practice model of mental health service provision for adults with dual disability
(E. Chaplin, Paschos, & O’Hara, 2010). Presently, a range of different models for service provision
exist, ranging from specialist dual disability services through to community ID teams and behaviour
management teams. Internationally, and even within countries, there is considerable variation in
the quality of service provision for individuals with dual disability (Cain et al., 2010; Davidson &
O’Hara, 2007).
3.1 Provision through general or specialist services?
Before individual service models are reviewed, it is important to address a comparison often drawn
in the dual disability literature; that is, whether assessment and treatment services are best
provided through specialist or generic mental health services.
In some countries, including Australia, mental health services for people with ID are provided
through mainstream public mental health services (Centre for Developmental Disability Health
Victoria, 2011), typically staffed by multidisciplinary teams who work chiefly with the general
population (Jess, et al., 2008). In contrast, countries such as the UK primarily provide such
services though specialist ID services based within the community, typically staffed by a team of
multiple disciplines of health and social work professionals who tend to work predominantly with
people with ID, including specialist intellectual disability psychiatrists (Jess, et al., 2008; Werner &
Stawski, 2012). Notably, public policy in the UK has recently been directed towards encouraging
people with intellectual disability to access generic mental health services, with additional specialist
support available when needed (Bouras & Holt, 2009; Department of Health, 2001).
Chaplin (2004) reviewed studies comparing general and specialist mental health services for adults
with ID, reporting a paucity of controlled research examining the outcomes of these two basic
models of service provision, making it difficult to determine whether treatment in mainstream or
specialised services is preferable (c.f. E. Davis, et al., 2008). The little research that has taken
place has focused on the nature of the work undertaken by each type of service, rather than
outcomes, and has found that the specialist model may take place in a wider range of settings, and
provide services for a wider scope of mental illness (Jess, et al., 2008).
Broadly speaking, treatment within a generic mental health service is thought to allow the individual
to avoid segregation, stigma, discrimination and a sense of inferiority (Clark, 2007; Torr, et al.,
2008), but may also result in suboptimal care due to a lack of specialist knowledge, training and
resources, as well as unhelpful attitudes from general mental health staff who are reluctant to work
with these complex presentations (R. Chaplin, 2004; Jess, et al., 2008; Mohr, 2000).
Given the lack of controlled studies, it is unsurprising that authors differ in the conclusions they
draw regarding best practice in this area. Clark (2007), for example, concludes that generic mental
health services without specialist knowledge of dual disability are not currently the obvious choice
in terms of evidence based practice, best value or accountability. Similarly, Bennett suggests that
the consensus of opinion is that generic mental health services do not meet the needs of this
population (2008).
However, Torr and colleagues (2008) suggest that specialist mental health care should be provided
within the framework of generic mental health services in order to avoid segregation. Chaplin
(2009) reviewed the relevant literature and found that even in areas with highly developed ID
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Building capacity to assist adult dual disability clients access effective mental health services
services, people with ID continue to be admitted to general psychiatric services; this suggests that
general mental health services need to be adequately prepared to engage, treat and manage
individuals with dual disability, even in cases where comprehensive specialist services operate.
Bouras and Holt (2009) conclude that the argument for the provision of mental health care from
generic services appears sound and is widely supported. In a later paper, Chaplin (2010) suggests
that the preferred model should involve the provision of services primarily through mainstream
services, with specialist services available where appropriate for those with more complex needs.
However it was unclear how these groups would be differentiated.
In Australia, despite mental health services for adults with a dual disability being provided primarily
through generic mental health services, many mental health professionals indicate a preference for
specialised services. A survey of psychiatrists in Victoria undertaken in 1994 found that most
respondents believed adults with DD should be managed by specialised services, which they
believed would be able to provide a higher standard of care than generic mental health services
(Lennox & Chaplin, 1995). This view persisted in a similar survey undertaken in 2004, in which
many Victorian psychiatrists reported a strong need for specialist mental health services for
individuals with intellectual disability beyond services providing only consultation (Torr, et al.,
2008).
There are, of course, a great many service model options within the spectrum of generalised to
specific dual disability mental health service. Broadly speaking, they fall into three categories: (1)
services provided within generic mental health services, (2) specialist consultation services
designed to facilitate engagement with generic mental health services, and (3) specialist dual
disability services (R. Chaplin, 2009).
3.1.1 Generic mental health model
First, services may be provided solely through generic mental health services. It appears clear that
in order for this service model to be appropriate, staff must be adequately trained in assessing,
diagnosing and treating mental health problems in individuals with intellectual disability. This may
be achieved by including one or more specialised staff in the service. For example, E. Chaplin and
colleagues (2009) describe specialist ID mental health teams that are situated within adult mental
health services but function semi-autonomously. They offer a range of services to support those
with ID accessing generic mental health services.
In Australia, this service model may be hard to implement given the lack of specialist training
available for psychiatrists and other mental health practitioners to develop skills in working with
people with intellectual disability. Currently, formal training on mental health of people with
intellectual disabilities is only a formal requirement for psychiatrists in the UK (Costello, Hardy,
Tsakanikos, & McCarthy, 2010). Similarly, the Australian Psychology Accreditation Council does
not specify that psychologists, at any level of training, must gain experience working with clients
with intellectual disability. Overall however, there are few clinicians with expertise in dual disability
in Australia (Curran, et al., 2000). Further, the relatively small number of adults with intellectual
disability accessing mental health services is likely to mean that staff in these generic services
have little opportunity to put their specialised skills into practice, perhaps leading to the
abovementioned self-perpetuating cycle of minimal specialised knowledge and few specialised
clinicians (Werner & Stawski, 2012).
Building capacity to assist adult dual disability clients access effective mental health services
7
3.1.2 Specialist consultation-only model
Second, services may be provided through generic mental health services, but with an external
consultancy service utilised to aid engagement with mental health services, and to foster
collaboration between mental health and intellectual disability services.
Although this model is currently in place in Victoria (see below), a recent survey of Australian
psychiatrists reported a clearly expressed dissatisfaction with consultation-only services, although it
was unclear why this was the case (Torr, et al., 2008). One particular difficulty with this model is that
these services often lack an after-hours crisis service and, by default, generic mental health services
are required to respond out of hours, which can sometimes lead to an inappropriate or short term
response and consequent reluctance to respond in the future (Bennett, 2008). In addition, restrictive
acceptance criteria may prevent linkage to mental health services or exclude patients not already
linked.
3.1.3 Specialist dual disability model
Finally, services may be provided directly though specialised dual disability services. While still
linked to both generic mental health and intellectual disability services, specialist dual disability
services provide direct assessment, diagnosis and treatment for more complex cases. This model
may also incorporate an academic centre. For example, Agrawal and colleagues (2008) point to
the utility of adapting a ‘hub and spoke’ model, where a regional hub providing clinical services is
linked to an academic centre for training and research purposes. The spokes then involve outreach
and support to complement local services.
Currently, there are no specialist dual disability services in Australia that provide treatment and
ongoing management. According to Cain and colleagues (2010), the services that are available are
limited in scope (such as the consultation-only services described below), generally provided by
academic units, or tend to be ad hoc initiatives of psychiatrists with an interest in dual disability.
Of course, the degree to which services are provided through generic or specialist services is
largely dependent on local policy, resources and existing services. As such, examples of variations
of each of these models are seen internationally.
3.2 Service Models
A number of models are described specifically in the literature, and shall be reviewed briefly here.
3.2.1 Australian models
In Australia, the provision of mental health services varies from state to state, driven by a variety of
government policies concerning the provision of these services to individuals with ID (Dual
Disability Unit, 2002; Evans, et al., 2012). In general, the mental health needs of individuals with
intellectual disability are assumed to be met by generic mental health services (Cain, et al., 2010).
At present, there are four specialised services available for people with dual disability in Australia.
3.2.1.1 Victorian Dual Disability Service
An Australian example of a consultation-only model is the Victorian Dual Disability Service
(VDDS), a service established with the primary aim of improving the mental health of Victorians
over the age of 16 who have both an intellectual disability and psychiatric illness (Bennett, 2000). It
acts chiefly as a consultant service to Area Mental Health Services (AHMS), assisting staff working
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Building capacity to assist adult dual disability clients access effective mental health services
in these services to develop skills in the assessment and management of this client group. As
such, they provide:
 Clinical support in the form of phone-based advice and specialist assessments
 Professional development workshops specifically designed for clinicians from AHMS
 Resources, including the Resource Manual in Dual Disability (Victorian Dual Disability Service,
2001), designed to provide general information on a variety of aspects of dual disability
 Guidance on policy development and service initiatives
The VDDS do not provide direct case management or treatment (St Vincent’s Hospital Melbourne,
2012), although efforts to provide local interventions have continued.
An evaluation of the VDDS was undertaken in 2004 (St Vincent’s Hospital Melbourne, 2012).
However, at the time of writing the authors of this paper had been unable to obtain a copy of this
evaluation.
3.2.1.2 Centre for Developmental Disability Health Victoria
The Centre for Developmental Disability Health Victoria (CDDHV) came about when two
university-based units, developed to promote the health care (including mental health) of adults
with a developmental disability, were amalgamated in 1998 (Curran, et al., 2000). The centre
provides a number of services (Centre for Developmental Disability Health Victoria, 2007),
including:
 Clinical services, including a medical assessment clinic, psychiatry clinic, human relations clinic
and allied health clinic
 Education and training, including both undergraduate and postgraduate training for medical and
allied health professionals, as well as educational seminars and workshops
 Research focusing on the health and wellbeing of adults with developmental disabilities
 Systemic advocacy and policy development
The CDDHV does not provide primary or ongoing care services, nor does it provide out-of-hours or
emergency care.
3.2.1.3 Queensland Centre for Intellectual and Developmental Disability
The Queensland Centre for Intellectual and Developmental Disability (QCIDD) is a clinical and
academic centre dedicated to the dissemination of knowledge to students, health practitioners and
disability service providers, as well as the provision of clinical services to people with
developmental disabilities (University of Queensland, 2009). The centre provides the following
services:
 Clinical services, including comprehensive health assessments, psychiatric assessments, and
behaviour support consultancy
 Teaching, including undergraduate and postgraduate training, as well as education to the
community and disability sectors
 Research designed to improve the health of adults with intellectual disability
 Providing resources, including a collection of online resources for both health professionals and
individuals with a developmental disability
Building capacity to assist adult dual disability clients access effective mental health services
9
The QCIDD does not provide ongoing psychiatric care, nor does it provide out-of-hours or
emergency care.
3.2.1.3 Mental Health Service for People with Intellectual Disability
The Mental Health Service for People with Intellectual Disability is a joint initiative between the
mental health and disability sectors in the Australian Capital Territory (ACT Government Health,
2012). It is a specialist, consultation liaison service co-located with Disability ACT, providing the
following services to individuals with dual disability:
 Comprehensive clinical assessment
 Psychiatric treatment
 Expertise, training and education to community professionals and carers
However, in order to be referred, individuals must be clinically managed by Mental Health ACT or
Therapy ACT, or be living in a Disability ACT managed group home.
3.2.1.3 Developments throughout the rest of Australia
To the authors’ knowledge, Victoria, Queensland and the Australian Capital Territory are presently
the only states in Australia providing specialised services. In other states, developments regarding
mental health services for individuals with dual disability are generally focused on strengthening
relationships between mental health and intellectual disability services, rather than providing
specialised services.
In New South Wales, there is a memorandum of understanding between Ageing, Disability & Home
Care (ADHC) and Department of Human Services regarding the provisions of services to individuals
with dual disability (NSW Department of Health, 2011). However, the NSW Council for Intellectual
Disability suggests that individuals with dual disability currently have very poor access to appropriate
mental health services (National & NSW Councils for Intellectual Disability & Australian Association of
Developmental Disability Medicine, 2011).
The Disability Services Commission in Western Australia recognises ongoing concerns with
regards the adequacy of support and services for people with dual disability (Commission, 2007).
At present, however, work appears to be focused on strengthening the interface between disability
and mental health sectors, as opposed to providing specialised services.
Government information in South Australia directs people with dual disability to both disability
services and the generic mental health triage system (Department for Communities and Social
Inclusion, 2012).
In the Northern Territory, individuals with disabilities are referred to Specialist Disability Services for
therapy, allied health and behaviour management, among other services (Northern Territory
Government of Australia, 2012).
In Tasmania, some specialised services are provided by Optia Incorporated, a non-government
agency working with adults with intellectual disability (Optia Incorporated, 2012). Little information
on the state government approach to mental health services for individuals with intellectual
disability is available.
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Building capacity to assist adult dual disability clients access effective mental health services
3.2.2 International models
Reviews of international service models and the history of their development have already been
undertaken (Dart, et al., 2002; Davidson & O’Hara, 2007; Dual Disability Unit, 2002). Only those
international models that appear frequently in the literature, or have noteworthy features, are
described below.
3.2.2.1 Mental Health in Learning Disabilities
Perhaps the most well reported specialist dual disability service is the Mental Health in Learning
Disabilities (MHiLD), a UK mental health service for adults with an intellectual disability, intended
to complement mainstream mental health services (E. Chaplin, O’Hara, Holt, Hardy, & Bouras,
2008; E. Chaplin, Paschos, & O’Hara, 2010). The MHiLD has been in operation for over 25 years
and currently offers three broad categories of services: (1) community based specialist mental
health services, (2) a specialist inpatient unit of six beds for planned assessment and treatment,
and (3) training and clinically directed research/development (provided by the Estia Centre). The
MHiLD offers services such as:
 Specialist assessment
 Specialist interventions
 Follow-up and review of care plans and mental health needs
 Follow-up and review of psychotropic medication
 Crisis resolution
 Mental health promotion for people with learning disabilities
 Skills training for local learning disability service providers
 Carer and family education and support
 Court and other specialist reports
 Consultancy and academic courses
According to Chaplin and colleagues, the MHiLD has been developed within the same conceptual
framework as other specialist mental health teams in the UK and, as such, shares interfaces with
local mental health, general health and social care services for adults with an intellectual disability
(E. Chaplin, et al., 2008). Further, it is designed to complement these existing services by providing
information on appropriate assessment and treatment strategies, as well as offering practical
assistance (E. Chaplin, Paschos, & O’Hara, 2010). Each MHiLD community team consists of a
consultant psychiatrist, two psychiatric trainees and two community mental health nurses. Each of
these staff members are trained in both mental health and intellectual disability.
Within this model, adults with an intellectual disability may, according to their unique needs, be
served through either specialist MHiLD services, or generic mental health services with MHiLD
support (such as in-reach services when a known service user is admitted to an adult mental
health unit) (E. Chaplin, Paschos, & O’Hara, 2010). In 2008, the MHiLD was reported to hold
caseloads of between 600 and 800 people at any one time (E. Chaplin, et al., 2008).
The MHiLD is considered to be a successful model of service provision and appears to have
informed several service models across Europe, including Spain and Ireland, as well as further
afield in places such as Hong Kong (Cain, et al., 2010). According to the research centre
associated with MHiLD, those individuals admitted to the specialist unit demonstrated significant
Building capacity to assist adult dual disability clients access effective mental health services
11
improvements in functioning, and reductions in behavioural impairment, level of psychopathology
and severity of mental illness (The Estia Centre, 2005).
3.2.2.2 Mental Health Service for people with learning disabilities
The Mental Health Service for People with Learning Disabilities is a UK service located in
central London, consisting of four inpatient beds for people with mild intellectual disabilities within a
mainstream inpatient unit (Hall, Higgins, Parkes, Hassiotis, & Samuels, 2006). This was a
collaborative venture between adult mental health services and intellectual disability services,
designed to allow individuals with intellectual disability to access mainstream mental health
inpatient services. On this unit, inpatients are able to mix freely with other patients to avoid
segregation, but are provided with specialist support by mental health nursing staff who have
received additional training in supporting individuals with intellectual disability.
This service also provides a ‘virtual team’ of staff who meet on a weekly basis to discuss
individuals with dual disability living in the community. This team comprises psychiatrists,
psychologists, occupational therapists, nurses, pharmacists, care managers and community
support workers. A significant part of this work is directed at supporting and promoting access to
generic mental health services.
An evaluation of this service found significant improvements across a broad range of outcome
measures, including severity of mental health problems, Global Assessment of Functioning and
Health of the Nation Outcome Scales, in both community and inpatient groups (Hall, Parkes,
Samuels, & Hassiotis, 2006).
3.2.2.3 Toronto MATCH project
Davidson and O’Hara (2007) describe the Toronto MATCH project, a model for providing services
that consists of a network spanning over 40 agencies, each with commitments to providing
services for individuals with dual disabilities. Services provided across the network include:
 Education and training with a focus on prevention/early intervention
 Assessment and treatment planning
 Inpatient and outpatient settings
 Crisis response and intervention services
 Day treatment and vocational programs
 Long-term care via high levels of support to residential community-living settings
 Family support networks
 Respite services
3.2.2.4 Ontario ‘buddy system’
Mohr and colleagues (2000) describe a collaborative model of service provision in Ontario, where
separate mental health and intellectual disability services work together to meet the needs of adults
with dual disability. Collaborative between these services is heightened by a buddy system,
whereby both services assign a worker whose skills and expertise is complementary to their
partner in the other service. Further to this, staff from a specialist dual disability service act as third
party, objective facilitators between the two systems, promoting a particular joint case management
process.
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Building capacity to assist adult dual disability clients access effective mental health services
3.2.2.5 Rochester crisis intervention model
The Rochester crisis intervention model is a New York model described in several reviews
(Dart, et al., 2002; Davidson & O’Hara, 2007). It consists of a continuum of services provided by a
multidisciplinary team of specialists, including psychiatrists, psychologists and behaviour therapists.
Its services include:
 Crisis intervention services available 24 hours per day for acute behavioural crises
 Clinical assessment and treatment
 Inpatient and outpatient services
 Specialised residential services
 Family support services including respite services
 Prevention services providing staged education and training
 Family-centred case management
3.2.3 Reviews of service models
Several reviews have been undertaken in an attempt to outline and categorise current models of
service provision. Almost 20 years ago, Bouras and colleagues (1995) reviewed models of mental
health service provision for individuals with dual disability. They summarised four main models of
service provision: (1) a separate, specialised comprehensive provider including assessment,
treatment and continuing care services, (2) a community-based specialised mental health service
integrated mainly with the intellectual disability services, provided chiefly as an advisory service, (3)
a community-based specialised mental health service, integrated with mainstream mental health
services, and (4) separate ‘challenging behaviour’ services.
In 2002, a more comprehensive review was undertaken by the University of Queensland that
examined a wide array of international models of service provision to adults with a dual disability
(Dual Disability Unit, 2002). This review concluded that there was no clear definitive model of
preferred service delivery or best practice model, but presented 11 service models options, ranging
from specialised dual disability services through to more generic mental health options. These are
summarised below, however the demarcation between service options is somewhat unclear, and
some aspects appear to be components of effective service rather than service models per se.
At the most specialised end of the spectrum lies (1) a university affiliated dual disability service that
provides assessment, diagnosis and treatment, as well as consultation, technical assistance,
continuing education and capacity building for local care providers and families. The authors next
describe a model of (2) collaborative case management. It is unclear exactly what this service
model involves, other than “an integrated partnership that adopts case management”, but appears
that it involves community outreach and networking, as well as some specialist service provision. A
model with a more practical focus is the (3) specialist dual disability community outreach team,
which aims actively to seek out the appropriate client group and focus on improving the quality of
the individual’s everyday life by attending to basic needs such as housing, food and clothing,
alongside psychiatric and medical care. An (4) integrated specialist service model is also
described, where a specialist outreach team providing a community support role is combined with
inpatient assessment, treatment and management where these services cannot be provided within
the community setting. This model involves the establishment of a community-based agency that
has services that are integrated with both generic mental health services and disability services
The authors also draw attention to (5) specialist day services that provide specialist assessment
Building capacity to assist adult dual disability clients access effective mental health services
13
and treatment programs and are based at a hospital but do not include a residential service. With
regards to inpatient services, one service model involves (7) specialist residential assessment and
treatment units, which may provide assessment, treatment and care planning in circumstances
where such services are not able to be provided in the community. However, Cullen notes that
these units are often full to capacity with long waiting lists, and have difficulty discharging people
due to insufficient community based services available for follow up and support (Dual Disability
Unit, 2002). Another option consists of (8) dedicated acute beds for adults with ID within generic
mental health inpatient services, where such services are prepared to accept such clients. The
authors next describe (9) Generic mental health services and (10) mental health teams for
intellectual disability that offer clinical services and supported case management to adults with dual
disability, often involving coordination of care from different services across agencies or
organisations. It is difficult to determine how these service models differ. The review also draws
attention to (11) behaviour management teams which, despite demonstrating success with regards
to changing challenging behaviours, are considered inappropriate to meet the comprehensive
needs of adults with dual disability. Finally, the use of a (6) dual disability psychiatrist, who has
been trained in both mental health and intellectual disability, is also put forth as a service model
option. The psychiatrist provides services through either outpatient clinics or specialist dual
disability services.
While this review reports many dual disability services across a wide range of countries, the
descriptions of service models are somewhat variable and, as such, it is difficult to make
comparisons or draw conclusions (Moss, Bouras, & Holt, 2000). Variability amongst international
services and the modification of service models to suit the local context means that the process of
categorisation is largely academic and may be of limited practical usefulness when shaping a new
service. Instead, recent reviews have attempted to distil the core components of existing services,
revealing those which are necessary for best practice provision of services to individuals with dual
disability.
Hudson and Chan (2002), for example, discuss factors which they believe are common to all
service models, including: the use of reliable diagnostic assessment tools and procedures, the
participation and collaboration of a multidisciplinary team, the training of caregivers in the treatment
plan, continued care from inpatient to outpatient stage, monitoring of the individual following
treatment, and the use of a multi-system treatment approach.
Davidson and O’Hara (2007) also reviewed clinical services for people with dual disability, citing
service models primarily from America, as well as some from across Europe and Australia. In
describing each of these models, the authors again acknowledge that there is very little data
available measuring the impact of these services on service users, families, carers and other
service providers. Instead of attempting to categorise these models, however, the authors
summarise the characteristics of an ideal model. They describe an ideal service that is: established
by consensus, promotes cross-system access, provides comprehensive community-based, interdisciplinary services with tertiary links, has credibility, is funded directly, and provides training for
staff.
Most recently, Bouras and Holt (2009) list components of an effective psychiatric service for people
with intellectual disability, including: organising services around clients’ wishes and needs, good
interagency communication, high level of awareness of mental health issues by support staff and
primary care staff, multidisciplinary composition, ability to provide consultation, assessment and
treatment, provision of community-based interventions, access to local specialist and generic
community and inpatient assessment, treatment, forensic, and rehabilitation facilities, adequate
resources, clear coordination of inputs, staff training, and measurement of outcomes.
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Building capacity to assist adult dual disability clients access effective mental health services
4. Core components of service provision
Examination of the service models and reviews reveals several core components that appear to be
particularly important with regards to providing appropriate mental health services to individuals
with intellectual disability. Before outlining these components, two points are worth mentioning:
First, given the range and scope of important components, it is likely that services will need to be
provided through a comprehensive network of service providers, rather than a single service or
agency (Dart, et al., 2002; Davidson & O’Hara, 2007).
Second, given the lack of consensus in the international literature as to which services are
preferable, it may be most important to provide a variety of service options. That way, services can
be appropriately matched to an individual’s level of need and can be provided in the least
restrictive environment (Bouras & Holt, 2009; Dart, et al., 2002; E. Davis, et al., 2008). Factors
such as individual preference, level of intellectual disability, and existing service involvement may
determine which services an individual chooses to engage with. However in practice this will result
in multiple and at times conflicting assessments, without any service or provider engaging in
ongoing treatment.
4.1 Provision for assessment, treatment and continuing care
In order to facilitate the access to services of individuals with dual disability, it is important that any
service model incorporates the provision of high-quality assessment and treatment, as well as
continuing care. People with dual disability require treatment that is intensive, specialised,
integrated and long-term (E. Davis, et al., 2008). Continued care from inpatient to outpatient stage
is an important part of many service models, as is ongoing monitoring of the individual following
treatment (Hudson & Chan, 2002).
Currently in Victoria, two centres (VDDS and CDDHV) provide psychiatric assessments for
individuals with intellectual disability and complex mental health issues, although have different
criteria determining eligibility for services, which may restrict access. Such assessments are
ostensibly designed to facilitate ongoing engagement with generic mental health services or private
mental health professionals. However, differences in opinion and lack of resources of skills mean
that many recommendations are not enacted (Davidson & O’Hara, 2007). In order to ensure
recommendations are followed, some international models such as MHiLD provide specialist
interventions, as well as follow-up and regular reviews. Individuals are able to receive treatment
through either specialist services or supported engagement with generic mental health services (E.
Chaplin et al., 2010).
Although in Victoria an emphasis has been placed on providing treatment through generic mental
health services, there is a growing recognition of the need for additional specialist services as well
as help to access services (Davidson & O’Hara, 2007; Torr, et al., 2008). The most recent literature
points to the efficacy of services which support involvement with generic mental health services,
with the capacity to provide a full range of specialist services to those individuals with the most
complex needs (Bouras & Holt, 2009).
4.2 Inpatient and outpatient services
In recent times, service provision for individuals with mental health problems, including those with
an intellectual disability, has undergone a shift from institutionalisation towards care in the
Building capacity to assist adult dual disability clients access effective mental health services
15
community (Xenitidis, Henry, Russell, Ward, & Murphy, 1999). Public mental health care has been
driven by the guiding principle of “least restrictive environment” (Bennett, 2008). Community-based
services and activities are, of course, vital for long-term treatment of mental illness in individuals
with intellectual disability, and appear to reduce the need for hospital admissions (Davidson &
O’Hara, 2007). However, an inpatient admission may be required for appropriate assessment and
treatment in complex cases. Further, the lack of insight that sometimes accompanies a relapse of
mental illness sometimes necessitates an inpatient admission in order to provide compulsory
treatment (Hall, Parkes, et al., 2006). Calling on over ten years’ clinical experience, Bouras and
colleagues (1995) suggest that all community mental health services for individuals with dual
disability should be operationally linked to generic mental health services, with access to inpatient
facilities. More recently, E. Chaplin (2010) concluded that models for providing mental health
services to individuals with dual disability should include small specialist inpatient units.
In one UK study, Xenitidis (2004) reported that just under 17% of adults with dual disability in
contact with the community mental health/intellectual disability teams required psychiatric
admission over a three year period. In this same study, individuals with dual disability admitted to a
specialist inpatient unit significantly improved with regards to psychiatric symptoms, overall level of
functioning and behavioural disturbance. On balance, the literature appears to support specialist
inpatient units, perhaps located within generic inpatient units. Although individuals with dual
disability tend to stay longer on specialist inpatient units when compared to generic mental health
inpatient units, they are less likely to be discharged to an out-of-area placement (E. Chaplin,
Paschos, & O’Hara, 2010; Xenitidis, et al., 2004), and may be less vulnerable to exploitation within
a specialist unit (Kwok, 2001). Despite this empirical support, there remain some concerns with
inpatient admissions, with one American study reporting that about half the individuals with
intellectual disability admitted to a psychiatric inpatient unit did not warrant hospitalisation for
severe mental illness (Morgan & Lowan, 1989).
Effective running of specialist inpatient units requires strong links with community services and a
clear focus on discharge planning, in order to maintain throughput and ensure that inpatient units
do not become overrun (Mansell, Ritchie, & Dyer, 2010).
Unfortunately in Victoria there are no specialist inpatient units for individuals with dual disability. At
present, these individuals are required to stay in generic mental health inpatient units (Torr, et al.,
2008). Bennet and colleagues (2004) examined the prevalence of inpatient care for people with a
dual disability in Victoria, reporting that at the time of the study 35 people with an intellectual
disability were inpatients in mental health facilities with admissions longer than 2 months.
4.3 Consultation services
Providing consultation to external services such as Area Mental Health Services may facilitate
engagement with generic services that may otherwise lack appropriate training to provide care to
this population. There may also be a role for consultation services to facilitate collaboration
between services, such as by providing group training to intellectual disability and generic mental
health services.
The VDDS was established primarily as a consultation service in order to assist the Area Mental
Health Services in Victoria. This service currently provides consultations regarding the presentation
of mental disorders, mental health assessments, treatment and management of mental health
disorders, and services available in Victoria (as well as how to access these services) (St Vincent’s
Hosptial Melbourne, 2012).
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Building capacity to assist adult dual disability clients access effective mental health services
4.4 Crisis intervention and out-of-hours services
Service models such as that seen in Rochester (reviewed above) provide 24-hour per day crisis
intervention services which may help to contain and stabilise individuals experiencing mental
health crises (Davidson & O’Hara, 2007). The involvement of these services in treatment planning
would allow individuals to receive appropriate care and consistent responses even during mental
health crises.
A noted gap in the current provision of services to individuals with dual disability in Australia has
been the lack of after-hours crisis services (Bennett, 2008). This gap means generic mental health
services such as CATT in Victoria are required to respond to crises out of hours, sometimes
resulting in inappropriate, short-term or even counter-therapeutic responses and subsequent
difficulties in inter-agency relationships.
4.5 Specially trained staff
The implementation of any service model is, of course, entirely reliant on the availability of trained
staff (Davidson & O’Hara, 2007). Mental health issues in individuals with intellectual disability can
be particularly difficult to assess and treat, due in part to difficulties with receptive and expressive
communication, and the presence of challenging behaviours. Australian mental health
professionals have expressed a lack of confidence about determining the mental health needs of
individuals with intellectual disabilities (Jess, et al., 2008), and tend to believe they have not
received sufficient training in this area (Lennox & Chaplin, 1995, 1996).
Costello and colleagues (2010) reviewed the literature on training on mental health issues in
individuals with intellectual disability, and concluded that training was associated with increased
knowledge of psychopathology in individuals with intellectual disability as well as improved
attitudes, but was generally ad hoc and dependant on individual health professionals and local
service providers. The authors also make recommendations for the delivery of training for staff,
noting that training must facilitate and reflect the multidisciplinary nature of the work and, as such,
must provide a common language and framework.
4.6 Service provision by a multidisciplinary team
Many authors highlight the necessity of a multidisciplinary team when working with adults with dual
disability (Davidson & O’Hara, 2007; E. Davis, et al., 2008; Hudson & Chan, 2002). Ryan (1993),
for example, argues that no single professional group is able to treat this population on their own,
and that it is important to include input from psychiatrists, mental health practitioners, behaviour
specialists and case managers. Similarly, Bennett (2008) notes that individuals with dual disability
may raise more complexities in diagnosis and treatment than those with mental illness or
intellectual disability alone, and are sometimes beyond the resources of a single practitioner. This
is important to remember, given that when funding is scarce it is tempting for services to rely solely
on medical personnel to address mental health issues (Bamburg, et al., 2003). Using a
multidisciplinary approach allows treatment to take place across modalities (Bennett, et al., 2004;
E. Davis, et al., 2008), and ensures that the client receives the skills and talents of multiple
clinicians and in doing so allows care providers to be matched to individual needs (E. Davis, et al.,
2008). Bouras and Holt (2009) suggest that the multidisciplinary team should comprise
psychiatrists, mental health nurses, clinical psychologists, behaviour support specialists, therapists
and social workers.
Building capacity to assist adult dual disability clients access effective mental health services
17
The VDDS is currently staffed by consultant psychiatrists, a nurse, a psychiatric registrar, a
clinician and an administration officer (St Vincent’s Hospital Melbourne, 2012). The CDDV is
currently staffed by medical practitioners, consultant psychiatrists, an occupational therapist, a
speech pathologist, a counsellor, and an administration officer (Centre for Developmental Disability
Health Victoria, 2007). Although these services appear to draw from a range of disciplines, there are
noticeable gaps from disciplines such as nursing, clinical psychology and social work.
4.7 Specialist assessment and treatment resources
In reviewing the literature, several authors briefly mention the need for specialist assessment,
diagnostic and treatment resources (Bouras & Holt, 2009; Hudson & Chan, 2002). A number of
features of intellectual disability, such as receptive and expressive communication impairments,
acquiescence, suggestibility and difficulties with abstract concepts, require some modification to
the assessment and treatment of mental illness in this population (Flynn & Gravestock, 2010).
In a helpful review, Flynn and Gravestock (2010) outline some rating scales that may be used with
individuals with dual disability. They also point to the use of modified classification manuals such
as the Diagnostic criteria for psychiatric disorders for use with adults with learning
disabilities/mental retardation by the Royal College of Psychiatrists (2001).
In Victoria, the CDDHV have produced guidelines which screen for the presence of a psychiatric
disorder in adults with intellectual disability, in order to help health professionals more confidently
make appropriate management, treatment and referral decisions (Curran, et al., 2000). One set of
guidelines was produced for GPs; another for intellectual disability or mental health professionals.
The Senior Practitioner – Disability has also produced a Clinical Assessment Resource Folder.
4.8 Strong, collaborative relationships between service providers
It is extremely clear that people with dual disability require input from a range of services, including
those from both the disability and mental health sectors (Bouras & Holt, 2009).
More than a decade ago Mohr and colleagues (Mohr, 2000) identified collaboration with intellectual
disability services as the most important feature of generic mental health services that sought to
meaningfully engage individuals with intellectual disability. They outlined the key elements of a
collaborative model of service provision, where services are being provided by both mental health
and intellectual disability services:
a. Shared understanding of different models. It is important for each service to understand the
others’ frameworks and language (terms such as ‘case management’ have different meanings
across different services). Mohr and colleagues (2000) suggest that it can be helpful for a third
party specialist service to understand the difference in service models and bridge the gap by
acting as a translator and educator.
b. Effective communication. Services must be able to share information effectively, including
regular meetings with members of different services in the presence of the client.
c. Respect for and willingness to learn from each other. In order to maintain an atmosphere of
collaboration services should be willing to share knowledge and skills freely. They should also
be willing to listen and learn from each other.
d. Multidisciplinary inputs.
e. Ability to resolve dynamic tensions.
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Building capacity to assist adult dual disability clients access effective mental health services
f. Adequate resources. Ensuring that each service is adequately resourced, while difficult,
reduces the temptation for one service to ‘hand over’ to another as quickly as possible.
Several other authors have also suggested means to improve collaboration between services.
Patterson and colleagues (1995) reported an anecdotal lessening of tensions between mental
health and intellectual disability services, as well as improved working relationships following the
institution of an inter-agency consortium to overcome fragmented care for individuals with dual
disabilities. Similarly, Davidson and colleagues (1995) demonstrated that a collaborative approach
led to greater coordination of services and, ultimately, services that were much improved. Chan,
Hudson and Vulic (2004) suggest providing inter-agency continuing education about roles and
responsibilities, undertaking joint case management and assessment, and sharing resources to
provide services. Finally, Chaplin and colleagues (2010) recommend joint initiatives such as
training to both intellectual disability and mental health services.
In 1994, the Victorian Department of Human Services released a Protocol Between Intellectual
Disability Services and Psychiatric Services. This document sought to help intellectual disability
services and psychiatric services work effectively with each other for the benefit of people with dual
disability receiving services from both programs. According to Curran and colleagues (2000),
however, this document was thought to be largely unworkable for practitioners and did not appear
to greatly improve collaboration between mental health and intellectual disability services.
4.9 Client-centred, inclusive approach
One important aspect of service provision to adults with dual disability is the inclusion of the
individual and their caregivers in both the assessment process and the development and
implementation of a treatment plan (Bouras & Holt, 2009; Hudson & Chan, 2002).
It has been suggested that, in many cases, services fail to understand the complex social networks
on which people with intellectual disability rely (Hall, Parkes, et al., 2006). It is important that each
individual is viewed within the broader context of their environment, and that attention is paid to the
informal (family, friends and colleagues) and formal (services, groups and organisations)
interactions that occur on a daily basis. Identifying these connections provides a framework for
identifying where more support can be provided, in order to strengthen the whole system (Dart, et
al., 2002).
4.10 Education and training
Almost all of the service models reviewed recognise the need for ongoing education and training,
directed at clients and caregivers, as well as professionals. Education regarding mental illness in
individuals with intellectual disability is particularly important for prevention and early intervention
(particularly with regards to increasing caregivers’ recognition of signs of mental illness).
Education appears to be a component of service provision that is reasonably well addressed in
Victoria. The CDDHV provides extensive tertiary education (undergraduate and postgraduate) and
educational sessions for people with a developmental disability, while the VDDS provide
workshops and training for Area Mental Health Service staff (Centre for Developmental Disability
Health Victoria, 2007; St Vincent’s Hosptial Melbourne, 2012).
Building capacity to assist adult dual disability clients access effective mental health services
19
4.11 Links to academic research centres
In reviewing the literature on provision of mental health services to individuals with dual disability,
perhaps the clearest inference to be drawn is the need for ongoing research. A great number of
authors draw attention to the need for more controlled studies in this area (E. Chaplin, Paschos,
O’Hara, et al., 2010; R. Chaplin, 2004; E. Davis, et al., 2008).
In Victoria, the CDDHV is involved in a great variety of research that aims to provide an increased
understanding of the health and wellbeing of adults with development disability, including
evaluation of effective interventions, assessment tools, and models of primary health care service
delivery (Centre for Developmental Disability Health Victoria, 2007).
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Building capacity to assist adult dual disability clients access effective mental health services
5. Stakeholder consultation
Consultation with various Victorian stakeholders by the authors of this document was sought to
explore viewpoints on current obstacles to service provision, and optimal management of
challenging behaviour in dual disability by Area Mental Health Services.
In addition researchers attended a dual disability forum held on 15 November 2012 which had
goals overlapping with this project. The outcome of that forum is to our understanding not yet
available but it is likely that there will be substantial overlap with this study. The forum sought to
address similar concerns to those which prompted this study, namely that dual disability clients
were poorly served by existing services.
Criteria for inclusion as a stakeholder included frequent clinical interactions at the interface of
intellectual disability and mental health. We did not seek exhaustive or specifically representative
opinion but rather hoped to elicit a range of viewpoints about current service gaps and possibilities
to remediate these as well as the reason behind them.
Consultation included staff from the following agencies:Indigo (service provider for Multiple and Complex Needs Initiative, with expertise in assessment
and care planning for complex clients including those with comorbid intellectual disability, mental
health and offending issues).
Acute Psychiatric Intensive Care Service (APICS, a gazetted 4-bed locked psychiatric unit at
Alfred Health, which is a statewide resource for the mental health sector, at times tasked with acute
inpatient management of challenging patients with dual disability under the Mental Health Act).
Victorian Advocacy League for Individuals with Disability (VALID Inc, an advocacy service for
people with intellectual disability).
Victorian Dual Disability Service (mental health service funded to provide statewide specialist
assessment and capacity building for the mental health sector to assess and manage clients with
dual disability).
Centre for Developmental Disability Health Victoria (CDDHV, a statewide centre which aims to
promote and manage the health of people with intellectual disability, including mental health
needs).
Meetings were held between the researchers and representatives from stakeholders at the location
of their service. Stakeholders were provided with a list of broad questions (Appendix 1) to enable
preparation and forethought. Opinions were transcribed and arranged thematically. What follows
then is a broad discussion of the issues raised by stakeholders without attribution and specific
opinions to stakeholders reflecting general themes.
5.1 Eligibility for services
Stakeholders perceived that very specific referral criteria excluded certain referral sources or
particular behaviours, based upon (what were perceived as) arbitrary criteria. It was noted that
there was some resistance to acceptance of these clients, which appeared associated with stigma
as well as therapeutic pessimism in referrers.
The effect of recurrent refusals of service to address specific problems was noted also to be
demoralising for those referred, who were often keen for help. Frequently noted was the recurrent
Building capacity to assist adult dual disability clients access effective mental health services
21
labelling of problems as “behavioural” rather than related to a mental health diagnosis, and
consequently not perceived as warranting mental health service input. The label “behavioural” was
considered inappropriately applied and used to exclude people with challenging behaviours and
dual disability from mental health services.
In addition, also noted was that personality disorder or substance use disorders were often used to
exclude people from mental health services despite any significant diagnostic rigour for the
diagnosis of personality disorder in people with intellectual disability.
Emergency Departments were noted as a place where many mental health interventions or
assessments took place for people with dual disability and it was noted that they were intimidating
places, where behaviourally disturbed clients were met by security staff, and that the environment
was high in stimulation and not designed for the needs of dual disability clients.
It was clear that services had evolved in an unplanned fashion and some stakeholders noted that
at times multiple opinions were sought from different agencies about the same person, reflecting a
crisis or the helplessness of managing staff. Some stakeholders noted that significant resources
were devoted to mediation between services, advocacy for a client and seeking a pragmatic
outcome, which varied depending on local practice and culture.
A number of stakeholders noted that the Mental Health Act definition of mental disorder should
more explicitly include intellectual disability, rather than exclude it as a criterion for involuntary
treatment. It was seen that there was a significant lack of guidance, leadership and policy to
address the needs of those who fell between service systems.
All stakeholders noted the difficulty of engaging services in cases involving acquired brain injury,
which were not considered core business by either disability services or mental health services. In
addition, particularly challenging clients were mentioned, including those who actively sought
containment or imprisonment and were not deterred by this as a sanction and whose needs were
difficult to meet elsewhere.
Also noted was that there were occasions when individual relationships with accessible and
competent staff provided a conduit for services and enabled development of innovative and
beneficial assessment plans which were person-centred and not simply reactive.
5.2 Services offered by stakeholders
There were a range of service models providing for varying degrees of assessment, primary and
secondary consultation, telephone advice, the provision of information, formal assessment and less
frequently, capacity for ongoing treatment. This was available but tended to be time-limited and
reserved for very specific cases which would not be able to access assistance elsewhere.
Other stakeholders noted that most services were isolated from one another and functioned as
“silos” and thus had specific resources such as capacity for case management, expertise in
assessment or treatment but not necessarily all of these.
It was pointed out that there were a number of case conferences but few frontline staff capable of
implementing management plans. In addition some perceived that the brokerage model of disability
services seemed to disadvantage dual disability clients, as services were contracted out and the
client ended up with fragmented care.
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Building capacity to assist adult dual disability clients access effective mental health services
5.3 Area Mental Health Service skills
Some stakeholders noted that many services looked to mental health services to provide a
contained environment to manage behavioural disturbance in the community. Some services were
praised for broad and inclusive criteria for acceptance of clients, their flexibility in multi disciplinary
working and their capacity to provide outreach based interventions.
Stakeholders almost universally however identified training deficits and lack of experience amongst
Area Mental Health Service staff in the provision of effective treatment to dual disability clients. In
addition mental health services were perceived to lack an understanding of the disability and
welfare sectors and had limited capacity for assessment in the client’s own environment. Most
services in the mental health sector were considered to have limited access to skills and limited
sense of mastery when dealing with dual disability clients, and consequently were anxious.
It was noted that mental health staff had become deskilled in the application of principles of
behaviour analysis and management, that benchmarks for dual disability clients were lacking and
that there was very limited experience base compared to countries in which training in learning
disability psychiatry was mandatory.
It was also considered that disability staff often failed to appreciate the range of medical services
available. In the medium term it was considered that some client service needs were akin to those
of rehabilitation provided in a Community Care Unit; and in the longer term the goal should be for
self sufficiency.
5.4 Underpinning values
Although mental health services were often perceived as being more professional and organised,
stakeholders often noted their lack of person-centred culture, and noted that treatment in a
paternalistic model did not effectively empower clients.
It was also noted that there was a significant mismatch between the values in the treatment models
of mental health which consequently might result in an increased use of restraint and seclusion for
dual disability clients. A remedy for this was seen to be an increase in opportunities to promote
human rights and train staff about how to implement these in practice. Some stakeholders
emphasised the need to develop collaborative practice where the client was a partner in treatment,
and treatment was individually tailored.
Some stakeholders considered that the provision of skills training was far less important than
values-based training and those individuals with the appropriate aptitudes were best placed to
meet the needs of complex dual disability clients. Noted with approval by some stakeholders was
the use of a practice code to provide skills and values based training in the workplace, which was
noted to provide “accountability and follow through”.
In addition it was noted there were often deficits in communication from mental health services that
generally relied upon written information and had limited use of visual information or local capacity
to assist those with sensory issues such as visual or hearing impairments.
5.5 The role of private practitioners
Some stakeholders considered that the utility of private practice service providers was limited and
that services should be provided exclusively in the public health and welfare systems. It was noted
that current funding models for psychology and psychiatry services did not meet the needs of dual
Building capacity to assist adult dual disability clients access effective mental health services
23
disability clients and yet there was limited funding for face-to-face workers. It was considered that
this might be addressed by the incipient disability insurance scheme.
Other stakeholders considered that the provision of a specific Medicare benefit for psychiatric,
general practice and physician involvement with clients with intellectual disability might aid in
increased involvement in the private sector. Some allied health professionals might also claim
specific Medicare benefits. However the billing model currently in operation privileged limited
assessment and did not adequately renumerate doctors and particularly specialists for site visits, or
for the range of inter-service communications and documentation which any of these cases
required. Nevertheless there was a reliance on private psychiatrists due to the reluctance of Area
Mental Health Services to offer services. It was noted that in general practice a model providing
financial incentives was often beneficial in upskilling service providers and enhancing their capacity
to manage specialised care.
5.6 Inpatient settings
It was noted that at times inpatient settings were needed, in particular when access to
comprehensive services including radiology, surgery and physician assessment were also required
to exclude occult pathology underlying challenging behaviour. Generic mental health services were
seen as toxic environments for people with intellectual disability, and disability staff was seen as
unable to manage mental illness safely and effectively in most disability settings.
Stakeholders gave cautious approval to the notion of a locked inpatient unit although many
reflected they would prefer to see it look more like a residential setting than an inpatient mental
health unit, that it should be staffed by a team with dual expertise and also expertise in substance
use, and there were strong opinions that inpatient units were traumatising for dual disability clients.
Consideration of environmental issues in an inpatient setting included creating a space sensitive to
the needs of people with intellectual disability, and the capacity for an individual client to have
some control over the personalisation of their room or having a single room.
Consideration was also given by some stakeholders to ring-fenced beds reserved for dual disability
clients in Secure Extended Care Unit or Continuing Care Unit settings. Obstacles to inpatient
assessment were noted to include exit strategies and accommodation, and there were few services
or individuals with a skill set focussed upon dual disability,
Operational obstacles included a mismatch between mental health and disability regions which
reduced the capacity for effective linkages, the development of collaborative relationships and
pathways between community and inpatient settings.
5.7 Visions of an effective service model
Generally stakeholders envisioned the development of an effective multidisciplinary team with selfselected staff who were then provided with further training. Team development was seen as
critical. It was noted that some specialities in the multidisciplinary team were less utilised than
others, in particular speech and language therapy. Should include reasons why multidisciplinary
teams are necessary for this client group
In many cases it was noted that despite the provision of expert “one-off” consultation, what was
regularly needed was recurrent assessment and intermittent support at a primary or secondary
level, or some considered more ideal, specialist case management. In addition multiple settings
24
Building capacity to assist adult dual disability clients access effective mental health services
including inpatient, outpatient and outreach models were considered necessary to meet the needs
of specific clients. Capacity building was seen as a key role for speciality services.
Some options also considered were dedicated dual disability teams, although there was a risk that
these would become isolated and the question of funding remained to be determined. Options such
as a portfolio holder within Area Mental Health Services were considered but it was noted that
would require skills across complex cases and resourcing to enable them to hold a caseload.
It was considered that capacity building would also involve funding of training positions and
fellowships or the provision of innovative training models, in particular to develop a skill set
extending outside mental health or disability alone.
Many stakeholders also identified the need for an inpatient unit with explicit skills in managing dual
disability clients, particularly with forensic issues. Also noted was the necessity of developing
capacity for extended in-home assessments due to the effects of changes in the environment on
behaviour and functioning in people with moderate to severe intellectual disability.
It was noted that the development of a coterie of skilled medical practitioners including physicians,
general practitioners and neurologists would benefit the welfare of those with dual disability as well
as enhancing the capacity of mental health services to assist clients with dual disability.
The skills of behavioural management specialists were considered invaluable by some
stakeholders, and would be applicable across the entire spectrum of services. This included
children, adults and elderly people with dual disability. In addition it was noted that occupational
therapy and speech and language service provision was sometimes necessary but had not been
considered.
5.8 Conclusions of stakeholder consultation
All stakeholders identified obstacles to access for dual disability clients and noted the exclusionary
attitudes of mental health services and staff, and also lack of diagnostic assessment and diagnosis
skills for dual disability. Most specialist services with capacity for dual disability work were
considered underfunded and limited in resources and could generally offer little more than
consultation. It was noted that fragmentation of services meant that there was limited capacity for
joined up thinking across social and environmental, behavioural and psychological,
pharmacological and physical therapies and most of these were managed by different providers in
“silos”.
Building capacity to assist adult dual disability clients access effective mental health services
25
6. Service providers with expertise in dual
disability
One goal of the project was to compile a comprehensive database of services and the individual
practitioners with expertise in the provision of mental health services to clients with intellectual
disability. This task proved complex and suggests that active development of a coalition of
interested parties requires centralised effort in order to develop collaborative research, education,
training and service development.
It is clear that some individual practitioners are known to disability services and provide services to
them within their area of expertise. This will at times include the assessment and management of
people with complex disorders including dual disability. Efforts to contact individual practitioners
through peak bodies and request their permission to include them on a register were met with a
poor response and the ‘lists’ established were small and hardly exhaustive; as such they will not be
reproduced here. Peak bodies do not maintain publicly accessible databases
The Royal Australian and New Zealand College of Psychiatrists has an active special interest
group (SIG) in intellectual and developmental disability which has developed in the last couple of
years and has some college impetus. This has been associated with increased funding and activity
in other States including the appointment of professorial chairs (New South Wales) and active
recruitment to training positions. The SIG has been active in developing communications with
members, training packages and the provision of a briefing paper provided to the Minister for
Mental Health about unmet need.
There is a professional body of intellectual disability-skilled nurses (Professional Association of
Nurses in Developmental Disability Australia, or PANDDA). This coordinates a conference and
other meetings.
The Australian Psychological Society has a College of Educational and Developmental
Psychologists, and also a “People with Intellectual and/or Developmental Disability and Psychology
Interest Group”. The College runs an annual conference but does not clearly delineate a focus on
dual disability.
Other smaller craft groups such as speech and language therapists do not necessarily have craft
groups addressing dual disability. Most neuropsychologists will have some facility with a dual
disability client but there is no specialised grouping. Human relations counsellors are scarce,
known to the department but do not have a peak body.
It is recommended that specialist groups consider initiatives which might provide for training,
development and linkages between those with an interest in the field, in the form of ad hoc or
regular educational and social meetings. The Senior Practitioner – Disability appears to be the
optimal body to oversee such linkages, potentially in collaboration with the office of the Chief
Psychiatrist. Existing bodies such as the Royal Australian and New Zealand College of
Psychiatrists and the Australian Psychological Society may be able to promote training
opportunities which explicitly privilege training in the assessment and management of clients with
dual disability.
26
Building capacity to assist adult dual disability clients access effective mental health services
7. Current evidence base for intellectual
disability psychiatry
Recent literature addressing intellectual disability psychiatry was reviewed. The evidence base
remains limited due to:
 exclusion of people with intellectual disability from many studies;
 ethical constraints upon the inclusion of people who lack capacity into research;
 ethical constraints upon research into vulnerable and high risk populations including offenders
and those subject to restraint or restriction on liberties;
 low numbers in studies;
 heterogeneity in study sample (which reduces the applicability of these studies to specific
populations);
 difficulties in developing reliable assessment tools and criteria which are replicable for research
purposes.
Assessment tools tend to be task-specific and related to specific issues such as self-injurious
behaviour. Descriptive assessment remained the primary assessment methodology used in many
services. Applied behavioural analysis remains the main method of assessing problem behaviours
in people with dual disability and also noting the potential presence of mental disorder. The validity
of some instruments in common use is backed by research findings for use in intellectual disability
populations, e.g. the Brief Psychiatric Rating Scale (BPRS) (see e.g. Hatton et al., 2005).
A contemporary reference list for intellectual disability psychiatry:
1.
Bouras, N. & Holt, G. (2007). Psychiatric and Behavioural Disorders in Intellectual and
Developmental Disabilities. (2nd ed.). Cambridge University Press, Cambridge.
2.
Deb, S., Clarke D., & Unwin G. (2006). Using Medication to Manage Behaviour Problems
among Adults with a Learning Disability: Quick Reference Guide (QRG). Available at:
http://www.birmingham.ac.uk/research/activity/ld-medication-guide/index.aspx (retrieved 4 May
2013).
3.
Emerson, E. & Einfeld, S.L. (eds.) (2011). Challenging Behaviour. (3rd ed.). Cambridge
University Press, Cambridge.
4.
Goldstein, S., Naglieri, J.A., & Ozonoff, S. (eds.) (2009). Assessment of Autism Spectrum
Disorders. The Guilford Press, New York.
5.
Hassiotis, A., Barron, D.A., & Hall, I. (eds.) (2009). Intellectual Disability Psychiatry; A Practical
Handbook. John Wiley & Sons, Chichester.
6.
Lindsay, W.R. (ed.) (2009). The Treatment of Sex Offenders with Developmental Disabilities; A
Practice Workshop. John Wiley & Sons, Chichester.
7.
Lindsay, W.R., Taylor, J.L. & Sturmey, P. (eds.) (2004). Offenders with Developmental
Disability. John Wiley & Sons, Chichester.
Building capacity to assist adult dual disability clients access effective mental health services
27
8.
Luiselli, J.K. (ed.) (2012). The Handbook of High Risk Challenging Behaviours in People with
Intellectual and Developmental Disability. Paul H Brookes Publishing Co Inc, Baltimore.
9.
O’Hara, J., McCarthy, J., & Bouras, N. (eds.) (2010). Intellectual Disability and Ill Health: a
Review of the Evidence. Cambridge University press, Cambridge.
10. Odom, S.L., Horner, R.H., Snell, M.E., & Blacher, J. (eds.) (2007). Handbook of
Developmental Disabilities. The Guilford Press, New York.
11. Royal College of Psychiatrists (2001). DC-LD: Diagnostic Criteria for Psychiatric Disorders for
use with Adults with Learning Disabilities/Mental Retardation. Gaskell: London.
28
Building capacity to assist adult dual disability clients access effective mental health services
8. Moving forward in Victoria
Although empirical studies concerning models of mental health service provision to individuals with
dual disability are scant, the literature builds a clear picture regarding the components of service
delivery that are considered to be important. Given that multiple services would undoubtedly be
necessary to provide comprehensive mental health care to individuals with dual disability, it
appears the goal should be to provide a network based on a range of services and supports (Dart,
et al., 2002).
While some Victorian services are able to provide some of the components outlined above, there
remain gaps, particularly around access to specialist treatment, continuing care, inpatient units,
crisis intervention and strong, collaborative relationships between service providers.
When seeking to develop a local model of service provision, it is important to be clear about what
purpose the model seeks to achieve and what outcomes are desired (Dual Disability Unit, 2002).
Furthermore, bringing stakeholders together to sanction the need for, and characteristics of, a
comprehensive state-wide service model before it is established can help to facilitate a consensus
on the required components of a comprehensive service network (Davidson & O’Hara, 2007).
There are strong imperatives to drive an effective whole-of-government service response to the
needs of those with dual disability and challenging behaviours. A significant number of people with
dual disability are in prison rather than therapeutic settings, changes to funding of disability
services may galvanise service provision. A current care packages for a small number of dual
disability clients are very expensive and unsustainable in a frugal economic climate
We hope that this study can provide the basis of empirical research into the provision of mental
health services which meet the needs effectively of a marginalised and complex population.
Building capacity to assist adult dual disability clients access effective mental health services
29
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Building capacity to assist adult dual disability clients access effective mental health services