CDDHV Conference Proceedings

Welcome address from Convenor
Associate Professor Robert Davis

Director CDDHV
With the success in preventing and managing acute phases of
diseases including infections, diabetes, some cancers and
cardiovascular disease, governments in developing countries are
shifting the priorities of health care systems to chronic disease
management. The Health Special Interest Research Group of the
International Association for the Scientific Study of Intellectual
Disability is an group dedicated to providing leadership in
improving health outcomes of people with intellectual disability
and as such we need to be aware of the implications of this trend
in our approach to this population and thus take advantage of
the opportunities that the resultant shift in health policy direction
provides. This conference and roundtable aims to bring together
key people in the area, to build on our collective knowledge and
to prepare us for that task in our various constituencies.
Our program provides a mix of free papers, workshops and
discussion groups and will provide all participants with an
opportunity to share the latest developments in the field with
their colleagues around the world. This process will be facilitated
by the contribution of our keynote speakers that will provide a
background to our round table discussions. Dr Ellen Nolte has
recently completed a comprehensive study with a truly
international perspective on chronic disease management and
will give us the current perspective on the issues we need to
address. The two remaining speakers David OHara and myself
will bring the intellectual disability perspective to the discussion.
I would like to thank staff at the Centre for Developmental
Disability Health Victoria and at Monash Universitys Prato Centre
for their help in bringing together the conference and in particular
Faye Alphonso, our Administrative Manager, and Frances
Menzies and Caroline Menara, our secretaries.
A cross section of delegates who attended the 1st day of the Combined
International Roundtable of the Health SIRG and the Mental Health SIRG
of IASSID and the Annual Conference of the Australian Association of
Developmental Disability Medicine hosted by the CDDHV in Melbourne in 2005
I am sure you will agree that the venue for the conference
provides an attractive back drop to our activities and the
opportunity to develop our social networks. I hope you have
a great time in Tuscany and look forward to meeting with you
during the course of the conference at the venue or in the streets
of Prato.
About the Centre for Developmental

Disability Health Victoria (CDDHV)
The mission of the CDDHV, an academic unit established by the Victorian State
Government is to improve health outcomes for people with developmental disability by
enhancing the capacity of the generic health service systems to respond to their needs.
We do this through a range of educational, research and clinical activities. The Centre is
a joint initiative of Monash University and the University of Melbourne.
Our activities include:
leadership and
coordination in the field of
developmental disability
medicine
undergraduate and
postgraduate education
in developmental disability
medicine
clinical support and
consultancy in
developmental disability
medicine
clinical placements for
registrars
research programs in
relation to the health of
people with developmental
disabilities
Health and Human
Relations education and
counselling services
The Centre was developed

in 1998 through funding
obtained from the Disability
Services Division of the
Department of Human
Services (DHS), State
Government of Victoria.
It developed out of two
Developmental Disability Units
within the Departments of
General Practice at Melbourne
and Monash Universities. In
the 8 years since inception, its
funding has moved from being
wholly funded by the DHS to
its current level of 60% DHS
funding and 40% from other
sources.
The Centre for Developmental
Disability Health Victoria was
the first academic unit with an
interest in the health issues of
people with intellectual
disability established in
Australia. It has been followed
by similar Centres modelled
on the CDDHV being
established in Queensland,
New South Wales and in
South Australia.
The Centre has taken on a
leadership role in this new field
in medicine. Associate
Professor Davis the Director of
the Centre has been one of
the founders and is the
President of the Australian
Association of Developmental
Disability Medicine (AADDM)
since 2004 and Secretary of
the Physical Health Special
Interest Research Group
(Health SIRG) of the
International Association for
the Scientific Study of
Intellectual Disability (IASSID)
since 2000. The Centre held

the combined national
conference of AADDM and the
Health SIRG of IASSID in
Melbourne in 2005.
Associate Professor Davis as
chair, and Dr Jane Tracy, the
Educational Director of the
CDDHV as a committee
member, led the Working
Party for Disability in the
development of the Royal
Australian College of General
Practitioners new curriculum.
Learning objectives that cover
the working life of a General
Practitioner from student to a
GP with a special interest in
developmental disability will
be part of the expectation of
training for GPs. Associate
Professor Davis as the
President of AADDM has
successfully lobbied the
Commonwealth Department
of Health to include a
Medicare item for the health
assessment of people with
intellectual disability. It is
intended that this item will
become effective somewhere
between June and November
2007.
Better Health
Better Lives
Opening keynote address by Professor Mike Kerr at the Combined International Roundtable of the Health SIRG and the
Mental Health SIRG of IASSID and the Annual Conference of the Australian Association of Developmental Disability Medicine
hosted by the CDDHV in Melbourne in 2005
About the keynote speakers and facilitators
Mike Kerr
MBChB MRCGP
MRCPsych MSc in
Psychiatry
Michael Patrick Kerr is
Professor of Learning
Disability Psychiatry, in the
Department of Psychological
Medicine, Cardiff University in
the UK. This post combines
a research portfolio with
an active epilepsy service
providing two epilepsy clinics
per week and a further 16
peripheral epilepsy clinics
per year.
Mike is also involved in
providing input into the Cardiff
Rett Clinic held twice yearly.
In addition, Mike holds an
honorary post as consultant
neuropsychiatrist to the
Neuropsychiatric service at
Whitchurch Hospital Cardiff.
Mikes research interests are
in the health of people with
learning disabilities, epilepsy
and the quality of primary
medical care. Amongst many
other professional recognition
positions, he currently holds
the position of Chair of the
Health Issues Special Interest
Group of IASSID.
Bob Davis
PhD, MBBS, FRACGP
Bob has been Director of the
CDDHV since its inception in
1998 and works as a clinician,
teacher and researcher. He
started his professional life
working as a rural GP and as
the chair of a local community
organisation he was involved
in developing services for
people with ID. This in turn
led to his career today as a
leading medical practitioner
in the field of developmental
disability medicine in Australia.
His interests include the
management of medical
issues for people with
developmental disability and
in particular those issues
which impact on challenging
behaviours. His PhD thesis
looked at self-injurious
behaviour in people with ID.
He co-authored two chapters
on challenging behaviours and
the use of medication in both
the first and second editions
of the Management Guidelines
Book: People with
Developmental and Intellectual
Disability. He recently chaired
the Disability Working Group
for the new RACGP
curriculum. He is the
foundation President of the
Australian Association of
Developmental Disability
Medicine and the Secretary
of the Health SIRG of IASSID.
Ellen Nolte PhD
David M. OHara PhD
Dr Ellen Nolte is a Senior

Lecturer, European Centre
on Health of Societies in
Transition, London School of
Hygiene & Tropical Medicine.
Her main research is the field
of health systems including
approaches to health system
performance assessment,
health system responses to
chronic disease, international
health care system
comparisons, and population
health in the transition
countries of central and
eastern Europe and the former
Soviet Union. She will present
on the topic Responding to
the Epidemic of Chronic
Disease.
Dr OHara is Vice President at

the Development Westchester
Institute for Human
Development (WIHD), New
York State, USA. He joined the
Kennedy Krieger University
Center on Developmental
Disabilities (UCDD) as Director
of Social Work Training in
1975 becoming an Associate
Director of WIHD in 1987 and
Acting Director 1993-1994.
Since then in senior
management positions in
disability and foster care.
Ellen is a leading a team

in collaboration with the
European Observatory on
Health Systems and Policies,
on an international
comparative study that
examines the challenges
posed to health systems by
the rising burden of chronic
diseases in Europe and
beyond. Her presentation will
provide valuable and up to the
minute insight into the broader
concepts of how systems in
different countries manage
chronic disease.
David was the convenor of

the 2003 Roundtable in
Westchester which looked at
health care disparities. He has
had a longstanding interest in
the special health care needs
of children in foster care and
has developed a model health
care program focused on
meeting these needs at both
the UCDD and WIHD. He is
currently a member of a
special task force on the
health of children in foster
care set up by the American
Academy of Pediatrics.
The AAP recently published
Fostering Health: Health Care
for Children in Foster Care,
a set of standards for health
care providers working with
children in foster care. He is
eminently qualified to give the
presentation Developing
models of health care for
chronic medical illnesses
of people with intellectual
disability
Jane Tracy
MBBS (Hon),
DipRACOG, GCHE
Dr Jane Tracy is the
Educational Director of the
CDDHV. She is a general
practitioner who has been
with the Centre since its
inception in 1998. Prior to the
Centres formation she worked
in the Monash Developmental
Disability Unit and the
Developmental Disability Clinic
and Spina Bifida Clinics at
Monash Medical Centre in
Melbourne. She has an adult
son with developmental
disability and so has both a
professional and personal
understanding of and
commitment to the field.
Tracy has worked with her
colleagues to develop an
undergraduate curriculum in
Developmental Disability
Medicine and teaching
resources for both
undergraduate and
postgraduate students. During
her time at the Centre she has
completed a postgraduate
degree in higher education to
enhance her teaching
knowledge and skills. In 2005
Dr Tracy and her colleague Dr
Mary Burbidge produced the
Centres much in demand
teaching resource a CD
entitled Healthcare Scenarios
in Developmental Disability
Medicine.
Jenny Torr
(MBBS, Mmed
Psychiatry, FRANZCP,
member Faculty
Psychiatry of Old Age)
Director of Mental Health at
the CDDHV Dr Jenny Torr.
Jenny is a psychiatrist with
dual specialisation in
intellectual disability and old
age psychiatry. She has
established the primary care
mental health program at
CDDHV. Clinical services
include general adult and
older persons psychiatric
consultancy clinics and the
Down syndrome clinic. Jenny
is involved in the development
and delivery of educational
seminars and units for health
professionals at the
undergraduate and
postgraduate level as well as
the conducting of workshops
for families and carers of
persons with developmental
disability. She is involved in
research into mental health
disorders in people with
intellectual disability with a
focus on depressive disorders
and dementia.
Nick Lennox
MBBS FRACGP
Nick is a general practitioner
who has specialised in the
health of adults with
intellectual disability since
1992. He has become a
leading academic and
advocate in the field and has
published widely in national
and international journals.
He has developed the CHAP
(Comprehensive Health
Assessment Program) for
people with Intellectual
Disability, the Ask health diary
the first whole of life handbook
on health people with
intellectual disability and a
dual diagnosis educational kit.
He played a key role in the
IASSID (International
Association for the Scientific
Study of Intellectual Disability)
ratification of health guidelines.
Seeta Durvasula
MBBS, MPH, MPaed.,
DCH
Seeta is a medical practitioner
with experience in the
assessment and management
of health issues in children
and adults with developmental
disability.
Her current activities include
curriculum development and
teaching in the Graduate
Medical Program at the
University of Sydney and
research into health related
aspects of developmental
disability. She also conducts a
Nutrition Clinic for adolescents
and adults (in the St George
and Sutherland areas of
Sydney), in conjunction with
the Department of
Developmental Assessment,
St George Hospital. She also
holds positions of Honorary
Associate Physician at the
New Childrens Hospital,
Westmead and Affiliate
Physician, St Georges
Hospital.
The aim of this Roundtable
The aim of this Roundtable is to develop a framework from which to base the
development of strategies for the management of chronic disease in people with
intellectual disability.
We will be looking at the following questions in regards to
chronic disease management:
What are the essential elements to establish a framework for
the management of chronic disease in people with intellectual
disability?
What do we know about chronic disease and its
management in people with intellectual disability?
What should our priorities be?
What are the determinants of best practice?
How do we develop and/or promote models of best
practice?
How do we engage governments and the public at large?
We have been fortunate to be able to include a number of
workshops within the program that will provide the participants
with opportunities to gain a better perspective of some of the
more significant recent developments in the field from across the
world.
During each of the afternoons of the three days of the
conference participants will be divided into working groups to
develop a consensus for the Health SIRG for the development of
strategies for chronic disease management in people with
intellectual disability.
On the first day the working groups will determine the chronic
disease burden of this population, work out priorities in their
management and identify the obstacles and opportunities that
affect this management.
On the second day we will review the current range of
management strategies used for chronic disorders identified on
day one. We will identify examples of best practice and the
important gaps in services both from a national and international
perspective.
On the final day groups will be asked to formulate best practice
models of care for four important chronic illnesses including
psychiatric disorders, epilepsy, chronic disorders common in the
general population, spasticity and movement disorders.
At the end of the Roundtable the Physical Health Special Interest
Research Group of IASSID will have the basis for the
development of papers reviewing the principles of management
of chronic disease in people with intellectual disability. These will
be written with a view to developing models of best practice and
guidelines for the management of chronic diseases in people
with intellectual disability for promotion through the networks of
IASSID and for the production of publications.
The Program
Day one: The current evidence base on chronic disease in people

with intellectual disability
8.30 am 9.15 am
Registration in the lobby
Main Lecture Theatre The Salone Room

9.15 am 9.30 am Official opening and welcome address by Professor Mike Kerr
Chairman of Health Special Interest Research Group (SIRG)
International Association for the Scientific Study of Intellectual Disability (IASSID)
9.30 am 10.30 am Keynote presentation:
The Current Evidence Base on Chronic Disease in People with
Intellectual Disability or the Burden of Disease in People with ID
A review of the literature on prevalence of chronic disease and vulnerabilities in people with ID.
Associate Professor Bob Davis
Director, Centre for Developmental Disability Health Victoria, Monash University
Secretary of the Health SIRG of IASSID
10.30 am 11 am
11 am 12.30 pm
Morning tea
Parallel sessions one
The Salone Room Workshop (1 hr)
Sala Veneziana Room Workshop (1 hr)
Monitoring the health of People with Intellectual Disabilities

within the European Health Surveys.
Linehan*, Walsh Lantman and Kerr
Educating health professionals Why, Who, What,

When & How? Tracy
12.30 pm 1.30 pm
1.30 pm 3.30 pm
Lunch
Roundtable discussion groups
Discussion group 1 Salone Room
Discussion group 2 Sala Veneziana Room
Facilitator: Associate Professor Nick Lennox
Facilitator: Dr Seeta Durvasula
Each group to determine what it feels are the important chronic diseases in people with ID and for each of these diseases discuss
following topics:
1. The burden of disease present and future
2. What determines priorities in their management for people with ID?
3. What are the barriers to their management?
4. What opportunities are there to tackle the problem?
3.30 pm 4 pm
4 pm 5 pm
Afternoon tea
Panel discussion
Salone Room
Chair: Associate Professor Bob Davis
Summing up of discussion by facilitators and panel discussion.
Panel members: Professor Heleen Evenhuis, Associate Professor Henny Lantmann, Dr David OHara, Associate Professor
Nick Lennox, Dr Ellen Nolte, Prof Mike Kerr, Dr Helen Beange
5.30 pm
Poster session on the terrace during the Welcome Cocktail Party
Poster 1: Education of health

professionals in Developmental Disability
Medicine. Tracy
Poster 2: Predicting weekly step counts

of adults with intellectual disability.
Temple & Stanish
Poster 3: Social cognition and

psychopathology in Noonan syndrome.
Wingbermhle* et al
Day two:
Developing Best Practice in Chronic Disease Management
Main Lecture Theatre

Responding to the Epidemic of Chronic Disease

Dr Ellen Nolte
European Observatory on Health Systems and Policies
London School of Hygiene and Tropical Medicine
9.30 am 10.30 am
Parallel session one
Salone Room
Room 3
Sala Veneziana Room
Chair: Helene Evenhuis
Chair: Helene Ouellette
Chair: Bob Davis
National chronic disease management

strategies and their relevance to people
with intellectual disability. Durvasula*
Developing Doctors who See People not

Pathology. Tracy*
Health monitoring through GP data

bases. Lantman* et al
Paper: The interface of disability and

chronic disease. Lee, Rianto* et al
AAIDD & QOL models applied to chronic

disease management changes lives for
408 ID subjects. Chiodelli* et al
Aged Care for People with Intellectual

Disability: Care Needs vs Service
Systems. Torr*
10.30 am 11am
11 am 12.30 pm
Morning tea
Parallel session two
Salone Room
Room 3
Sala Veneziana
Chair: Helen Beange
Chair: Jenny Torr
Chair: Nick Lennox
Uneconomical care: Estimating the Cost

of Inadequate Integration of Healthcare
and Social Supports for Persons with ID.
Elliott*
Chronic Diseases among Adults with

Intellectual Disabilities. Levy*
Surveying the Health of People with

Intellectual Disabilities. Kerr & Perry*
How Nurses Assess Changes in Health

Status. Weaver and Atkins*
Adaptive behaviour in adults with Down

syndrome. Mt* et al
Client support system for both

intellectually and visually disabled people.
Bokken* et al
The Health Experiences of People with

Intellectual Disability: A Longitudinal
Study. Koritsas
The Impact of a dual diagnosis

(Intellectual Disability and Mental Health
Concerns) on SelfDetermination. LeRoy*
A safety net for detention of childhood

visual impairment in at risk groups.
Evenhuis*
12.30 pm 1.30 pm
1.30 pm 3.30 pm
Lunch
Facilitator: Associate Professor Bob Davis
Facilitator: Dr Jane Tracy
The groups will have a list of important chronic medical diseases identified on day one. All groups to document what types of
Chronic Disease in people with intellectual disability are managed in countries represented.
1. How are these managed (specialist services, integrated into generic, mix, none)
2. What are examples of existing best practice
3. What are important areas of chronic disease that are not covered nationally/internationally
4. What approaches to chronic care can we apply in the management of chronic disease in our respective constituencies.
3.30 pm 4 pm
Afternoon tea
4 pm 5 pm
Panel discussion
Salone Room
Chair: Professor Mike Kerr
Summing up of discussion by facilitators and panel discussion
Panel members: Professor Heleen Evenhuis, Associate Professor Henny Lantmann, Associate Professor Nick Lennox,
Dr Ellen Nolte, Professor Mike Kerr, Dr Seeta Durvasula, Associate Professor Bob Davis, Helene Ouellette-Kuntz
6 pm Those participants who are joining us for dinner must assemble at Centre Lobby to board bus to dinner venue
7 pm
Dinner at Cantina del Redi restaurant in Artimino
Day three: Developing models of health care for chronic

medical illness
Main Lecture Theatre
Developing models of health care for chronic medical illnesses of people with intellectual disability?

Dr David OHara
9.30 am 10.30 am
Parallel session one
Salone Room
Room 3
Sala Veneziana Room
Chair: Nick Lennox
Chair: Jane Tracy
Chair: Bob Davis
Organising Health Care Services for

Persons with an Intellectual Disability
A Systematic Review. Ouellette-Kuntz*
A new competence profile for ID

Physician. Ewals*& Huisman
Empowering Individuals with Intellectual

Disabilities to improve Their Health and
Well-Being. Milberger*
Addressing health disparities for

people with intellectual disability living
in residential settings a New Zealand
Service Providers model.
Ramsay and Rhodes
ID Physician in the Netherlands: from

institute to hospital. Huisman
Hypothalamic Hamartoma: Epilepsy,

learning disability and psychiatric
problems. Veendrick-Meekes* et al
10.30 am 11 am
11 am to 12.am
Morning tea
Parallel session two
Salone Room
Room 3
Sala Veneziana Room
Chair: Mike Kerr
Workshop (1 hr)
Workshop (1 hr):
Community impact of intranasal

Midazolam for prolonged seizures.
Kyrkou*
Health assessments in adults with

intellectual disability from research to
policy and practice. Lennox*
Multimorbidity and Care Management.

Evenhuis*
Serendipity during haematologic analysis:

accessory spleen and its implications for
management. Galli*et al
12 pm 1.30 pm

Lunch
AGM Health SIRG of IASSID
1.30 pm 3.30 pm
Facilitator: Dr Jenny Torr

Psychiatric Disorders & Chronic Disorders in General Population
Facilitator: Proessor Mike Kerr

Epilepsy & Spasticity /Movement Disorders
Each group will bring together the information of the 2 days and formulate a model of care for 2 of 4 different areas of chronic
medical problems in people with intellectual disability for 2 of the following:
1. Psychiatric Disorders
2. Epilepsy
3. Chronic Disorders Common in General Population
4. Spasticity/Movement Disorders/Mobility
3.30 pm 4 pm
4 pm 5 pm
Afternoon tea
Panel discussion
Salone Room
Chair: Associate Professor Henny Lantman
Summing up of the findings of the Roundtable and Close of the Roundtable.
Panel members: Professor Heleen Evenhuis, Associate Professor Henny Lantmann, Associate Professor Nick Lennox,
Dr Ellen Nolte, Prof Mike Kerr, Associate Professor Bob Davis, Helene Ouellette-Kuntz, Professor Mike Kerr,
Dr David OHara
Index of abstracts
Presenter
Topic
Atkins, Chris
How nurses assess changes in health status
18
Bokken, Josique
Client support system for both intellectually and visually disabled people
20
Chiodelli, Guiseppe
AAIDD and QOL models applied to chronic disease management changes lives for
408 ID subjects
17
Davis, Robert
The current evidence base on chronic disease in people with intellectual disability or the
burden of disease in people with ID: A review of the literature on prevalence of chronic
disease and vulnerabilities in people with ID.
12
Durvasula, Seeta
National chronic disease management strategies and their relevance to people with
intellectual disability
15
Elliott, Deborah
Uneconomical care: estimating the cost of inadequate integration of healthcare and

social supports for persons with ID
18
Evenhuis, Heleen
Multimorbidity and care management
Evenhuis, Heleen
A safety net for detection of childhood visual impairment in at risk groups
20
Ewals, Frans
A new competence profile for ID physician
22
Galli, M
Serendipity during haematologic analysis: accessory spleen and its implications

for management
24
Huisman, Sylvia
ID physician in the Netherlands: from institute to hospital
22
Koritsas, Stella
The health experiences of people with intellectual disability: a longitudinal study
18
Kyrkou, Margaret
Community impact of intranasal midazolam for prolonged seizures
24
Lee, Lynette
The interface of disability and chronic disease
16
Lennox, Nicholas
Health assessments in adults with intellectual disability from research to policy and
practice
LeRoy, Barbara
The impact of a dual diagnosis (intellectual disability and mental health concerns) on
self-determination
19
Levy, Joel
The management of obesity and other related chronic diseases among adults with
intellectual disabilities
19
Linehan, Christine
Monitoring the health of people with intellectual disabilities within European health
surveys
12
Mtt, Tuomo
Adaptive behaviour in adults with Down syndrome
19
Milberger, Sharon
Empowering individuals with intellectual disabilities to improve their health and

well-being
23
Nolte, Ellen
Responding to the epidemic of chronic disease
15
OHara, David
Developing models of health care for chronic medical illnesses of people with intellectual
disability?
21
Ouellette-Kuntz, Helene
Organising health care services for persons with an intellectual disability

a systematic review
21
Perry, Jonathan
Surveying the health of people with intellectual disabilities
20
Ramsay, Tracy
Addressing health disparities for people with intellectual disability living in residential
settings a New Zealand Service Providers model
22
10
Page
Back
cover
Back
cover
Presenter
Topic
Page
Temple, Viviene
Predicting weekly step counts of adults with intellectual disability
14
Torr, Jenny
Aged care for people with intellectual disability: care needs vs service systems
17
Tracy, Jane
Educating health professionals Why, Who, What, When & How?
13
Tracy, Jane
Education of health professionals in developmental disability medicine part of a

solution to the poor health status of people with a disability.
13
Tracy, Jane
Developing doctors who see people not pathology Victorian medical education in
developmental disability medicine
16
Van Schrojenstein
Lantman-de Valk, Henny
Health monitoring through GP data bases
17
Veendrick-Meekes,
Monique
Hypothalamic Hamartoma: epilepsy, learning disability and psychiatric problems
23
Wingbermuhle, Ellen
Social cognition and psychopathology in Noonan syndrome
14
11
Abstracts
Day one: First keynote address
Day one: Session one Workshop 1
The current evidence base on chronic disease in

people with intellectual disability or the burden of
disease in people with ID: A review of the literature
on prevalence of chronic disease and vulnerabilities
in people with ID
Monitoring the health of people with intellectual

disabilities within European health surveys
Associate Professor Bob Davis

Director, Centre for Developmental Disability Health
Victoria, Monash University
christine.linehan@ucd.ie
Robert.Davis@med.monash.edu.au
Linehan, C.
Centre for Disability Studies, School of Psychology,
UCD Dublin, Ireland
Walsh, P.N.
Centre for Disability Studies, School of Psychology,
UCD Dublin, Ireland
patricia.walsh@ucd.ie
Van Schrojenstein Lantman-de Valk, H.

Department of General Practice, Maastricht University,
Maastricht, The Netherlands
henny.lantman@hag.unimaas.nl
Kerr, M.
Department of Psychological Medicine, The Welsh Centre
for Learning Disabilities, Cardiff University, Wales, UK
kerrmp@cf.ac.uk
Recognition of people with intellectual disabilities within
public health data sets is a strategy recommended by experts
(Scheepers, Kerr et al 2005) to reduce health disparities. This
population has been relatively invisible in omnibus surveys of
health. Within the European Union, policy objectives include
gathering information to permit population comparisons across
constituent Member States and monitoring population health
over time. Arguably, without empirical documentation and
monitoring at country level, health inequities are more likely
to persist.
This paper presents the findings of a critical survey of current
Health Interview and Health Examination Surveys in 13 European
countries. Specifically, the authors aimed to determine whether
n=58 current HIS and HES instruments:
(a) included participants living in institutions, or proxies for
children, adults not living in the home or unable to respond;
(b) included items covering a set of 18 health indicators for
people with intellectual disabilities developed in the Pomona1 project; or
(c) could potentially yield health-related data relevant to people
with intellectual disabilities.
Findings suggest that very few surveys met any of these criteria,
although many have the potential to permit health monitoring on
behalf of people with intellectual disabilities.
12
Day one: Session one Workshop 2
Day one: Poster one
Educating health professionals

Why, Who, What, When & How?
Education of health professionals in developmental

disability medicine part of a solution to the poor
health status of people with a disability
Tracy, J
Centre for Developmental Disability Health Victoria,
Monash University, Melbourne, Australia
jane.tracy@med.monash.edu.au
The Centre for Developmental Disability Health Victoria has close
ties with the current two major medical schools in the State and
has successfully lobbied for a curriculum in Developmental
Disability Medicine within each. Curriculum components have
subsequently been developed and teaching sessions provided
to students at multiple points in their course. Now all students
graduating from Victorian medicals schools have been exposed
to the fundamental concepts in this discipline and have
developed the basic attitudes, skills and knowledge required
to provide health care to this patient group.
The importance of including Developmental Disability Medicine
in undergraduate medical curricula is being increasingly
acknowledged. Attitudes, skills and knowledge developed to
provide high quality care to people with a disability are equally
applicable to many other patient populations such as those with
chronic complex health issues, those with cognitive and or
communication impairments and those who experience barriers
to good healthcare resulting from discrimination, negative
stereotypes and social and financial disadvantage.
This workshop will provide a forum for those interested in
medical education in Developmental Disability Medicine to share
their ideas, frustrations and solutions. The Victorian experience
will be described and lessons learnt shared. Structured
discussion and debate will result in the identification of key
learning objectives and of ways in which the inclusion of
Developmental Disability Medicine enriches generic medical
competence. It is intended that outcomes from this workshop
will support those lobbying for the inclusion of Developmental
Disability Medicine and those developing curriculum components
in medical school curricula throughout the world.
Tracy, J
This poster will outline:
1. The health inequities between people with a disability and
the general population in terms of barriers to healthcare
encountered and the resultant health outcomes.
2. The past medical/healthcare education in Victoria prior to
2000 included very little Developmental Disability Medicine,
and what there was was generally confined to paediatrics.
3. The present medical education in Victoria currently includes
Developmental Disability Medicine taught at multiple points in
the medical curricula at both major medical schools in the
State. All medical graduates have, therefore been exposed to
fundamental principles in the health and healthcare of people
with a disability by the time they graduate. Some of the
current teaching sessions and teaching resources will be
illustrated.
4. The future healthcare education in Victoria includes more
than just doctors! A project is now underway at the Centre
for Developmental Disability Health Victoria to develop online
learning resources for students of medicine, nursing,
emergency health/paramedic, speech pathology, social
work, physiotherapy, occupational therapy, dietetics, mental
health and dentistry, among others.
5. Education building bridges over barriers. The ways in which
educational outcomes can create the will and the knowledge
and skills to build bridges over the barriers to good
healthcare encountered by people with a developmental
disability.
13
Day one: Poster two
Day one: Poster three
Predicting weekly step counts of adults with

intellectual disability
Social cognition and psychopathology in

Noonan syndrome
Viviene A. Temple*
University of Victoria, British Columbia, Canada
P.A.M. Wingbermuhle
Vincent van Gogh Institute for Psychiatry, Venray,
The Netherlands
vtemple@uvic.ca
Heidi L. Stanish
University of Massachusetts Boston, USA
Heidi.Stanish@umb.edu
Engaging in regular physical activity is an investment in individual
and community health; and promoting physical activity among
people with intellectual disability is an important public health
goal. Timely and accurate information on the patterns of physical
activity is needed for policy-making, planning, program
implementation, and measuring progress and success.
The aim of this study was to determine how many days of
pedometer wear were sufficient to predict weekly steps of adults
with intellectual disability. Participants were 154 ambulatory men
and women ranging in age from 18 to 69 years. Yamax digiwalkers were used to assess the walking behaviour for seven
consecutive days. Descriptive statistics and regression analysis
were used to examine the usefulness of daily, 2-day, 3-day, 4day, 5-day, and 6-day steps counts to predict average weekly
steps. Participants averaged 8143 3790 steps per day over the
seven day timeframe. Forward stepwise regression analysis
indicated that Wednesday predicted the most variance in
average steps per day. When two days were entered into the
model, adjusted R2 increased from .593 to .828. As the number
of days entered into the model increased, adjusted R2 was
steadily augmented. Three days of monitoring accounted for
nearly 90% of the variance in average weekly steps per day.
These results indicate that 3-days of pedometer data were
sufficient to estimate weekly steps. This finding has practical
applications to study design protocols. Reducing data collection
periods from 7-days to 3-days reduces the cost of projects and
burden to participants.
14
pwingbermuhle@ggznml.nl
J.I.M Egger
The Netherlands
Radboud University, Behavioural Science Institute/
Department of Clinical Psychology, Nijmegen,
The Netherlands
W.M.A. Verhoeven
The Netherlands
Erasmus University Medical Centre, Department
of Psychiatry, Rotterdam, The Netherlands
wverhoeven@vvgi.nl
C.J.A.M. van der Burgt

Radboud University Medical Centre, Department of Human
Genetics, Nijmegen, The Netherlands
S. Tuinier
The Netherlands
Noonan syndrome (NS) is a clinically and genetically heterogeneous
disorder. The clinical phenotype is characterized by short stature,
facial dysmorphia and a variety of heart defects. Despite the high
prevalence of NS (1 in 1000 to 2500 live births), cognitive and
social functioning of adult patients is largely unexplored, and there
is scarce literature on psychiatric comorbidity. Some authors have
noticed that NS subjects have impairments in affective processing
and social behaviour as well as more anxiety. The present study
was designed to explore the neuropsychological and psychiatric
profile of a large group of NS subjects aged 16 years and up. The
first series comprised 5 male and 5 female subjects (mean age:
29,7 yrs). Tests and interviews were used to measure variables in
domains such as intelligence, social cognition and social
behaviour, psychopathology, and quality of life. All data on the
medical history and relevant somatic or psychiatric comorbidity
were recorded. IQ was somewhat diminished (mean TIQ: 90;
range: 65-125). No discrepancy between verbal and performal
IQ could be demonstrated. Social cognition, defined in terms of
emotion recognition and alexithymia, appeared to be moderately
impaired. As to psychopathology, no increased frequency of
(DSM-IV) disorders was found, although anxiety and depressive
symptoms were reported more frequently. Most patients showed
themselves to be satisfied with their lives. In adult patients with
Noonan syndrome, IQ is slightly lowered. Results confirm
impairments in affective processing, implying problems in social
adaptation and coping abilities. The psychopathological profile
shows symptoms of anxiety and depressed mood.
Day two: Second keynote address
Day two: Session one
Responding to the epidemic of chronic disease
National chronic disease management strategies

and their relevance to people with intellectual
disability
Dr Ellen Nolte
European Observatory on Health Systems and Policies
London School of Hygiene and Tropical Medicine, UK
Ellen.Nolte@lshtm.ac.uk
Objective
To review approaches to chronic disease management in
Europe, Canada and Australia and assesses the contextual,
organisational, professional, funding and patient-related factors
that enable or hinder implementation of strategies to address
chronic illness.
Methods
Case studies in seven countries (Australia, Canada, England,
France, Germany, Netherlands, Sweden) that examine in-depth
approaches to chronic illness care in the respective health care
setting, using a structured questionnaire.
Findings
Approaches to chronic care vary between and within countries.
The involvement of the non-medical profession differs
considerably between countries with England, Sweden, and, to
lesser extent, the Netherlands and Australia making extensive
use of nurses but not France or Germany where there are legal
and professional restrictions on the deployment of nurses
outside hospital. Although the role of self-care is being
acknowledged as a key component of effective chronic disease
management, systems supporting self-care remain relatively
weak in many settings. The sustainability of chronic care models
faces considerable challenges in all health care settings. These
include administrative and financial obstacles to enhance the
coordination and/or integration of health and social/community
care services; under/mis-investment in suitable information
systems; conflicting policies (activity-based funding vs. shifting
care into the community); focus on cost reduction; and the
potential impact of electoral cycles.
Dr Seeta Durvasula
Centre for Developmental Disability Studies,
University of Sydney, Sydney, Australia
seetad@med.usyd.edu.au
In many countries, chronic diseases and their associated risk
factors are increasingly being recognised as major contributors
to the total disease burden in the population. In Australia, the
major chronic diseases account for almost 50% of total deaths
and 70% of total health expenditure allocated to diseases (AIHW,
2006). As in many other countries, the response of the Australian
Federal and State governments has been to develop a national,
coordinated approach to the surveillance, prevention and
management of chronic disease.
It is well established that people with intellectual disability have
significantly increased rates of mortality and morbidity, when
compared with the rest of the community. Chronic diseases and
their acute sequelae are important contributors to this increased
mortality and morbidity. In addition, chronic disease risk factors
such as obesity and poor physical fitness are more prevalent in
people with intellectual disability. Thus the burden of chronic
disease in this population is at least as significant as in the
general population. Can a general national approach to chronic
disease management be effective in meeting the needs of
people with intellectual disability?
In this presentation, the patterns of chronic disease and risk
factors in the general population and in people with intellectual
disability will be compared. Using the example of Australia, the
relevance and potential application of a National Chronic Disease
Strategy to people with intellectual disability will be discussed.
Reference
Australian Institute of Health and Welfare 2006. Chronic diseases
and associated risk factors in Australia, 2006. Cat. No. PHE 81.
Canberra:AIHW.
Implications
An effective response to the emerging epidemic of chronic
disease requires a health system environment that allows for the
development and implementation of structured approaches to
chronic disease management. Experience thus far suggests that
particularly systems that are characterised by fragmentation of
health services are facing considerable challenges towards the
successful implementation of system-wide strategies to provide
care for patients with chronic illness.
15
The interface of disability and chronic disease

Dr Juliani Rianto*
Dr Alexis Berry
Clinical Associate Professor Lynette Lee
Department of Rehabilitation Medicine
Concord Hospital Sydney
Juliani.Rianto@email.cs.nsw.gov.au
This paper presents the findings of a retrospective audit of the
files of 215 cases of people with chronic conditions associated
with intellectual disability who were referred to an Australian
Rehabilitation Medicine Service during 2004-2006.
The cases ranged in age from 12 years to 72, with a
preponderance of profoundly disabled young people living
in supported accommodation settings.
As expected there were three groups of people a large group
with stable chronic disorders related to the neurological cause
of their intellectual disability (ie with neurosensory disorders,
neuroendocrine disorders, epilepsy and mental illnesses),
a smaller group with disorders related to lifestyle factors and
ageing (such as obesity, hypertension and musculoskeletal
changes) and a very small number with cancer.
The total score on the Functional Independence Measure (FIM)
was used to quantify the need for support for personal care,
mobility and cognitive tasks. There was good correlation
between level of dependency and level of cognitive impairment,
but little correlation between care need and the presence of
other chronic disorders. Level of dependency did not increase
with age except in those whose cognitive condition deteriorated.
The process of reviewing these patients has contributed to
the development of research questions being posed in other
epidemiological work in progress on the health and welfare
service impact of ageing in people with intellectual disability.
16
Developing doctors who see people not pathology

Victorian Medical Education in Developmental
Disability Medicine.
Dr Jane Tracy
Centre for Developmental Disability Health Victoria, Monash
University, Melbourne, Australia
To create tomorrows doctors we must work with todays
students. The Centre for Developmental Disability Health Victoria
(CDDHV) puts a high priority on the education of medical
students and has, over the last 10 years, been successful in
advocating for the inclusion of Developmental Disability Medicine
within the curricula of the current 3 medical schools in Victoria.
This success has lead to the creation of a curriculum in
Developmental Disability Medicine integrated throughout the
medical course ensuring all medical students (and many staff!)
are now exposed to fundamental concepts of this discipline at
multiple points throughout the course. Teaching Packages
support the delivery of curriculum components and enable their
delivery by local tutors as well as by CDDHV teaching staff. Two
primary resources have been developed for student use
throughout their course, with supplementary reading lists
provided online.
The CDDHVs success in undergraduate teaching has been
extremely valuable in advocating for the inclusion of
Developmental Disability Medicine in the postgraduate training of
General Practitioners. Other educational activities originally
designed for undergraduate students have formed the
foundation for sessions provided for practicing general
practitioners and psychiatrists.
This paper will briefly describe the history of our undergraduate
program and the process of advocacy and curriculum
development. The current curriculum will be outlined and
examples given of specific curriculum components and Teaching
Packages. The development and use of student resources will
be discussed. The current CDDHV educational project, in which
an online learning environment in Developmental Disability
Medicine is being developed for undergraduates, will be
presented.
AAIDD and QOL models applied to chronic disease

management changes lives for 408 ID subjects
Chiodelli G.
Corti S.
Leoni M.
Galli L.
Fioriti F.
Fondazione Sospiro, Cr, Northern Italy
giuseppe.chiodelli@fondazionesospiro.it
Fondazione Sospiro (Cr, Northern Italy) is a big residential facility
for 408 persons, with ID from mild to profound, which used a
merely medical management system since it was created (1896)
until May 2006. Prevalence of medical diseases is 80%, and
60% for mental disorders.
In May 2006 we implemented a restructuring work based on
American Association on Intellectual and Developmental
Disabilities. (10th edition of the System on Definition,
Classification, and Systems of Supports for ID) and QOL Models.
Principally, in terms of medical management, we changed from a
hospital approach to a community scheme, where emergency
cure becomes a structured daily prevention (primary, secondary
and tertiary) treatment. Moreover, the evolution from an
institutional paradigm to a residence one has been corroborated
by organization of intensive training for all staff members (100%
of increase from 2005 to 2006), focused both on knowledge of
new models and practices (cognitive-behavioral techniques).
As a first step of results, of these new medical approach
integrated with psychoeducational CBT approaches, we present
different QOL indirect indexes: significant reduction in drugs
administration, drastic decline in physical restraint for challenging
behaviors, quick drop of sedative intervention for acute
behavioural problems, and diminution of emergency medical
interventions.
Health monitoring through GP data bases

Van Schrojenstein Lantman-de Valk, H.M.J.,
Department of General Practice, and Care and Public
Health Institute (Caphri), Maastricht University, Maastricht,
The Netherlands
Pepijn and Paulus Centre, Echt, The Netherlands
henny.lantman@hag.unimaas.nl
Straetmans, J.M.J.A.A.
Department of ENT, University Hospital Maastricht,
The Netherlands
Dinant, G.J.
Department of General Practice, and Care and Public
Health Institute (Caphri), Maastricht University, Maastricht,
The Netherlands
GP data bases provide excellent opportunities to collect
information on health problems that were presented by
registered patients. Comorbidity is much more frequent in
people with intellectual disabilities (ID) and morbidity patterns
are different from the general population.
We examined the number of consultations, reasons for
encounter and prescriptions of people with ID in a large primary
care registration (about 400,000 listed patients).
Within a national sentinel study, the Second Dutch National
Survey of General Practice, we identified 850 persons with ID.
Each person with ID was matched with five control persons of
the same age and gender and registered in the same practice.
In a 1:5 matched sample, people with intellectual disabilities
paid 1.7 times more visits to GPs, when compared to the 4305
controls. Morbidity patterns in people with ID differed from the
controls. Repeat prescriptions were four times more for people
with intellectual disabilities.
Data from this study will be presented. These will form the basis
for recommendations on health monitoring.
Aged care for people with intellectual disability:

care needs vs service systems
Dr Jenny Torr
Jenny.Torr@med.monash.edu.au
The population of older people with intellectual disabilities (ID) is
rapidly increasing. Research has focused predominantly on the
health issues of people with Down syndrome and Alzheimers
disease with few studies examining the health profiles of the
older population with ID in general or other specific subgroups.
At a policy level there is an assumption that older people with ID
will have the same prevalence of health problems as the general
population and that generic health, mental health and aged care
services will meet their needs. This paper will review our current
understanding of the health and mental health needs of older
people with ID and examine pathways to care in a generic
system. The situation in Australia will be used as a case example
of compartmentalised generic services and the lack of policy
regarding the interface of disability, health, mental health and
aged care sectors.
Schellevis, F.J.
Netherlands Institute of Health Services Research NIVEL,
Utrecht
Department of General Practice, Vrije Universiteit Medical
Centre, Amsterdam, The Netherlands
17
Day two: Session two

Uneconomical care: estimating the cost of
inadequate integration of healthcare and social
supports for persons with ID
Deborah Elliott MD FRCPC
Queens University, Kingston, Ontario, Canada
elliottd@post.queensu.ca
The objective of this study is to develop a conceptual framework
for analyzing the cumulative costs of healthcare and community
support for persons with Intellectual Disabilities (ID) and mental
health needs. Potential inefficiencies in cost sharing will be
identified. It is hypothesized that sometimes persons with ID
enter and remain in hospital because it is less expensive for
funders of social support while more expensive for the
healthcare budget. The costs related to four typical service
utilization patterns of persons with ID as they traverse the
systems of social service supports and of healthcare are
estimated and, when analyzed, the cost patterns highlight the
gaps in service and the overlaps in funding from government
departments. Delays in the provision of service allow one
government department to save money by offloading the cost of
care to another department or agency. The examination of the
economics of care of persons with ID and mental health
concerns reveal that political ideology should be considered as a
primary determinant of health. Other policy implications will be
discussed. These policy recommendations may be transferable
to other jurisdictions and to other situations for persons with ID
and chronic or recurring medical conditions.
How nurses assess changes in health status

Bob Weaver and Dr Chris Atkins
Disability Enterprises, Leura, NSW, Australia
healthteam@disabilityenterprises.com.au
While there has been significant inquiry into what to assess in
relation to the health of individuals with intellectual disability as
well as chronic and complex health care needs (for example,
Health Guidelines for Adults with an Intellectual Disability), there
has been little to say about how to assess. Drawing on research
of Registered Nurses perceptions of quality of life for these
individuals (Atkins, 1998), this paper explicates the processes by
which Registered Nurses assess changes in health status. These
processes are together described as becoming intimate and
involve the three empathising processes of knowing, interpreting
and feeling.
Devolution of services for people with intellectual disability has
meant, in many instances, the removal of Registered Nurses
from their direct care. This paper, therefore, examines the
implications of these changes and the new challenges
Registered Nurses face in health assessment, including their
relationships with:
18
clients
families
disability support workers
General Practitioners
emergency services, and
health specialists.
As an example, this paper will trace the development of a model
of health care which is funded by the New South Wales
Department of Disability, Ageing and Home Care and came
about as a consequence of the characteristics of the client
group, their geographical location and the context of health and
disability services.
The health experiences of people with intellectual

disability: a longitudinal study
Stella Koritsas
Teresa Iacono
Robert Davis
stella.koritsas@med.monash.edu.au
teresa.iacono@med.monash.edu.au
robert.davis@med.monash.edu.au
David Hamilton
Institute of Disability Studies, Deakin University,
Melbourne, Australia
david.hamilton@deakin.edu.au
A number of researchers have documented increased mortality
rates in all populations with developmental disabilities, as well as
increased and undetected morbidity in comparison to the
general population. Researchers have also identified inadequate
primary and preventive health care, high rates of obesity, and low
levels of participation in physical activity. A longitudinal study was
conducted to examine the health experiences and service
utilization of adults with an intellectual disability (ID). 185 people
participated in the study. The sample comprised 98 males and
87 females with a mean age, at follow up, of 35 years (ranged
between 20 to 74 years).
Preliminary analyses revealed over time there was a difference in
the number of times people with ID received outpatient services
and the number of medications the person was taking. There
was also a difference in the number of people with ID who
received general anesthetic in order to undergo any tests,
services or treatments, or to complete a dental procedure. There
was also a difference in the number of people receiving a flu shot
and a pap smear test. DBC-A results will also be discussed.
The management of obesity and other related

chronic diseases among adults with intellectual
disabilities
Dr Joel Levy*
YAI/NIPD, New York, USA
joel.levy@yai.org
Improved health care for people with intellectual and/or
developmental disabilities has led to increases in longevity
for this population. As a result, health conditions not typically
a concern in this population have now become an issue.
As in the typically aging population, coronary heart disease
(CHD) is becoming a concern for people with intellectual
and/or developmental disabilities. Moreover, there is increasing
evidence that secondary conditions related to CHD, such as
hypertension and, hypercholesterolemia, and diabetes mellitus
may be beginning to affect people with intellectual and/or
developmental disabilities at younger ages than the general
population.
The goal of the current study therefore was to examine the
prevalence of overweight and obesity in adults with intellectual
and/or developmental disabilities living in a community. Data
were collected from an ethnically diverse population of
individuals who obtained primary care at a specialty medical
practice that serves individuals with intellectual and/or
developmental disabilities from New York and four of the
surrounding boroughs. Detailed chart reviews and the New York
State OMRDD developmental Disabilities Profile-2 were utilized
to obtain information about height, weight and other medical
conditions and demographic and disability information
respectively. The prevalence of overweight/obesity varied by
ethnicity and by co-morbid health conditions such diabetes,
hypertension and, hypercholesterolemia will be presented.
Results of the current study will be discussed in terms of the
need for preventative care practices and service coordination.
Adaptive behaviour in adults with Down syndrome

Tuomo Mtt*
The Joint Authority for Kainuu, Finland
tuomo.maatta@kainuu.fi
Tuula Tervo-Mtt
Anja Taanila
The University of Oulu, Finland
Markus Kaski
Matti Iivanainen
The Rinnekoti Research Centre, Finland
Aim
The aim was to evaluate the clinical use of an adaptive behaviour
measure in people with Down syndrome and Alzheimers
disease.
Methods
The principal author evaluated the adaptive behaviour in adults
with Down syndrome for six years. Clinical assessments and
repeated informant ratings by the Adaptive Behavior Scale
Residential and Community (ABS-RC:2 1993), Part I, were used.
The method is designed to evaluate important coping skills for
daily living.
Results
The adaptive behaviour remained stable in young adults.
A progressive decline of the ABS scores was seen in many
participants after their early forties. The demonstration of a
functional decline helped to raise the suspicion or Alzheimers
disease and to monitor the progression of the disease.
Alzheimers disease was confirmed and treated in many of the
elderly participants. Interpersonal differences in scores were
great at all ages.
Discussion
The study group represents people with behavioural changes
perceived by carers. The adaptive behaviour could be assessed
by ABS-RC:2 in adults with intellectual disability at all phases
of ageing and dementia. This method overcomes many of the
problems of cognitive based measures. The subscales
correlated and differed slightly in their sensitivity to change.
The method can be used to complement the clinical evaluation
of adults with intellectual disability and functional decline due to
suspected or confirmed Alzheimers disease.
References
The Adaptive Behavior Scale Residential and Community
(Nihira K, Leland H, Lambert N (ABS-RC:2), 1993 American
Association on Mental Deficiency, Finnish translation by Irja
Martikainen, Markus Sundin and Anneli Tynjl).
The impact of a dual diagnosis (intellectual disability

and mental health concerns) on self-determination
Barbara W. LeRoy, Ph.D.
Director, Developmental Disabilities Institute,
Wayne State University, 4809 Woodward Avenue,
Detroit, MI 48202 USA
b_le_roy@wayne.edu
Self advocacy and empowerment is not only the current best
practice model in the field of intellectual disability, but are
mandated in the state of Michigan (USA). Individuals with
intellectual disabilities and their families must be given the
opportunity to express their wishes, make choices regarding
their services and supports, and direct their own budgets. In
contrast, traditional mental health practice operates on a medical
model, in which the doctor is the expert and individuals with
mental illnesses are passive recipients of treatment. This
apparent discrepancy in the attitudes of the two systems may
undermine the efforts of individuals with dual diagnoses to
achieve self-determination.
19
In order to determine the impact of a dual diagnosis on selfdetermination, a study was conducted with a large service
provider in Southeast Michigan (Detroit metropolitan area).
Approximately 300 persons with intellectual disabilities were
recruited into the study. They were assessed as to the existence
of mental health concerns using the Psychiatric Assessment
Schedule for Adults with a Developmental Disability (PAS-ADD)
(Moss et. al., 1993). Additional information was gathered on
individual demographic characteristics and indicators of selfdetermination, as defined by state monitoring criteria.
Findings from the study will be presented, including the
prevalence data on dual diagnosis for the study sample and
demographic and self-determination correlates to dual diagnosis.
Implications for policy and practice will be discussed in light of
the disability-related needs of persons with a dual diagnosis and
the self-determination mandates of the state service system.
Surveying the health of people with intellectual

disabilities
Kerr, M.
Perry, J.
Department of Psychological Medicine,
The Welsh Centre for Learning Disabilities,
Cardiff University, Wales, UK
kerrmp@cf.ac.uk
perry@cf.ac.uk
A prerequisite for the effective management of chronic disease in
people with intellectual disabilities is information about the extent
of chronic disease amongst this group and information about
past and current remedial action. To date, attempts to gather
such information have tended to be inadequate, not least
because until recently there has been no instrument dedicated
to the measurement of chronic disease amongst people with
intellectual disabilities.
The Pomona 18 has been developed for precisely this purpose.
Drawing from data collected during a pilot study undertaken in
12 EU member states as part of the development of the Pomona
18, this paper will illustrate the type of information the new
instrument will yield. When collecting this type of information a
decision has to be taken about the best source the person with
intellectual disabilities or a third party. Evidence from research on
quality of life assessment will be presented briefly, to raise the
issue of whether self or proxy report is the more appropriate.
Client support system for both intellectually and

visually disabled people
Josique Bokken
Inge Wiersema
Martin Scheerder
Prof Heleen Evenhuis
Sensis, Dept Intellectual Disability Medicine, Erasmus
University Medical Center Rotterdam, the Netherlands
jbokken@sensis.nl
20
Care and support for people with both intellectual and visual
disabilities require specific expertise. Both disabilities influence
each other negatively, respectively add up.
Sensis offers specific advice and support for this group, aimed
at ophthalmologic and functional assessment and intervention,
spectacle training, support of the client system, education and
training of carers, technical advice for the living environment.
Evaluation of implementation and effects of this programme has
shown, that after 9 months, on average 35 55 % of given
advices have been effectuated. Carers are familiar with these
advices in similar percentages (Sjoukes et al, not yet published).
To improve implementation, Sensis has recently developed an
adapted client support system for this specific group of clients.
Our current advices tend to be too informal, insufficiently
specific, and too many. Working with objective, achievable,
individualized main and working targets, based on
multidisciplinary diagnostic assessments, is central to the new
method. This offers clear advantages: individual overview and
direction and specific evaluation points.
Main target is the individual long-term aim: which situation/
change do the client and his family/carers want to effectuate in a
specified period?
Working targets should be effectuated within 1-4 weeks and are
meant to create the necessary conditions to reach the main
target. They may directly concern individual functioning or
indirectly improvement of external support. Implementation of the
targets and individual effects will be evaluated applying goal
attainment scaling. Details and first findings of this project will be
presented.
A safety net for detection of childhood visual

impairment in at risk groups
Dr Heleen M. Evenhuis
Intellectual Disability Medicine, Dept General Practice,
Erasmus University Medical Center Rotterdam,
The Netherlands
h.evenhuis@erasmusmc.nl
On behalf of the Dutch working party

Detection of childhood visual impairment in risk groups
Children with intellectual disabilities have an increased risk
of visual impairment, caused by both ocular and cerebral
abnormalities, but this risk has not been quantified. The same
applies to preterm children and children with cerebral palsy with
a normal intelligence.
Many cases probably go unidentified, because participation of
these children to preschool vision screening programmes is not
guaranteed, or because no screening programme is available.
A safety net construction for vision screening has recently
been proposed by a multidisciplinary Dutch expert working
party, based on scientific evidence and joint professional
expertise, to improve identification of both ocular and cerebral
visual impairment in at risk groups. Costs and gains of the
model will be scientifically evaluated in a test region.
Safety net for preschool vision screening in at

risk groups
For whom?
Children of at risk groups (who do not

participate in public preschool screening
programme):
preterm (< 32 weeks)
developmental delay or intellectual
disability
cerebral palsy
Aims
Day three: Third Keynote Address

Developing models of health care for chronic
medical illnesses of people with intellectual
disability?
Dr David OHara
Vice President for Development, Westchester Institute for
Human Development (WIHD), New York State, USA.
dohara@wihd.org
Early detection of:

refractive errors
Day three: Session one
ocular abnormalities
suspicion of cerebral visual impairment
Requirements
Contacting
Limited number of screening moments,

to facilitate participation
Organising health care services for persons with

an intellectual disability a systematic review
More extensive assessment than in

regular screening
orthoptic/
ophthalmologic referral
Hlne Ouellette-Kuntz
Queens University, Kingston, Ontario, Canada
Link to vaccinations around age 12 months

and 4 years
direct referral by vaccinating child
healthcare professional (physician, nurse,
health visitor), pediatrician or pediatric
neurologist
Contents of
screening
around age
12 months
Refraction
Ocular abnormalities
Visual behaviour
impairment?
cerebral visual
Screening questionnaire for cerebral visual

impairment?
Contents of
screening
around 4
years
Fixation and following

Strabismus
Visual acuity (Lea or Stycar test)
oullette@post.queensu.ca
Robert Balogh
baloghr@yahoo.com
Angela Colantonio
Laurie Bourne
University of Toronto, Toronto, Canada
A systematic review of the literature was conducted to assess
the effects of organisational interventions for the mental and
physical health problems faced by adults with an intellectual
disability. Only randomized controlled trials, controlled clinical
trials, controlled before and after studies and interrupted time
series of organisational interventions were included. Two
reviewers independently extracted data and assessed study
quality. Study characteristics and results were summarized in
tables and meta-analyses were performed when appropriate.
Eight studies met the inclusion criteria. In general the studies
were of moderate methodological quality. The included studies
investigated interventions dealing with the mental health problems
of persons with an intellectual disability, none focused on physical
health problems. Four of the studies identified effective
organisational interventions and the other four showed no
evidence of effect. Only two studies were similar enough to
analyse using a meta-analysis. In the pooled analyses, 25
participants received assertive community treatment and 25
received standard community treatment. Changes in measures of
function, caregiver burden and quality of life were non-significant.
We conclude that there are currently no well designed studies
focused on evaluating the organisation of the health services of
persons with an intellectual disability and concurrent physical
problems. There are very few studies of organisational
interventions targeting mental health needs and the results of
those that were found need corroboration. High quality health
services research aimed at improving the lives of persons with
an intellectual disability is possible and long overdue.
21
Addressing health disparities for people with

intellectual disability living in residential settings
a New Zealand Service Providers model
Tracey Ramsay
tracey.ramsay@idea.org.nz
Wendy Rhodes
IHC New Zealand (NZ) Inc, Wellington, New Zealand
wendy.rhodes@idea.org.nz
The New Zealand government policies aim to make significant
improvements in health gains as part of the wider social aims for
New Zealanders. Good health having two essential elements
how long people live and the quality of their lives.
This presentation will provide an overview of:
The context of Health and Disability service provision within
the New Zealand
The Service providers response to the New Zealand
government policies on Health and Disability
Background to a service providers model of support for
people with chronic health conditions in residential settings.
How the providers model works and tools used in linking
service users to health care services both primary care and
secondary care and how this framework supports front-line
support staff as the key agents in delivery of care and
support to service users.
A new professional profile has recently been established for all

33 medical specialisms, according to the CanMEDS frame work,
to build on the 33 new curricula. Meanwhile the opportunity
presented itself to redefine and specify the profession of ID
physicians. To what core business, competences and positions
do ID physicians appropriate themselves? In February 2007
the competence profile was accepted by the national board
of medical professions.
The competences were described in 7 domains: medicine
practice, communication, cooperation, knowledge and science,
public proceedings, organisation and professionalism. Each
of these sections was filled in with specific professional
competences. This presentation illustrates the main
competences. The full text was published on www.nvavg.nl.
This year a new curriculum will be developed based on the
competence profile. The profile will induce the development of
guidelines, best practices and health indicators and targets. This
also means an endorsement for new positions of ID physician to
offer specialized care outside the institutions (see presentation
ID physician in the Netherlands: from institute to hospital).
ID physician in the Netherlands: from institute to

hospital
Sylvia Huisman
ID physician Prinsenstichting Purmerend, the Netherlands
sahuisman@tiscali.nl
Learnings and reflection of our experiences over the past

8 years and challenges ahead.
Frans Ewals
University Rotterdam, The Netherlands
Outline some options for future service delivery to achieve

improved health outcomes for people.
frans.ewals@quicknet.nl
A new competence profile for ID physician

Frans Ewals
ID physician Erasmus University Rotterdam,
The Netherlands
frans.ewals@quicknet.nl
Sylvia Huisman
ID physician Prinsenstichting Purmerend, The Netherlands
sahuisman@tiscali.nl
On behalf of NVAVG (Netherlands Society of Physicians

for People with Intellectual Disabilities)
This presentation is the third in a row of IASSID congresses that
shows the development of the ID physician as a new medical
specialism in the Netherlands: 1. The ID physician, a new
specialist (Scholte, 2000, Seattle); 2. The ID physician training
program, results and perspective (Meijer, 2004, Montpellier); 3.
A new competence profile (2007, Prato).
22
On behalf of NVAVG (Netherlands Society of Physicians

for People with Intellectual Disabilities)
Both Australia and The Netherlands have managed to develop
specialized medical care for people with ID. From early days
there are differences in care systems and specification of duties.
In the Netherlands the process of discriminating duties between
general practitioner and ID physician rapidly evolves. Primary
care is more and more offered by a general practitioner.
Specialized medical care by ID physicians is available if needed.
These developments were precipitated by several guiding
documents: 1. NVAVG mission statement (2002) specialized
medical care is available to all people with ID who need it; 2.
European Manifesto on Basic Standards of Health Care for
people with ID (2004); 3. community care transfer protocol for
medical care to general practitioners (Maastricht, 2003); 4.
NVAVG-LHV agreement (2005) and 5. subsidiary scale of
charges for ID physician (2003/2007).
Since a few years general practitioners and clinical specialists
can refer to an ID physician. ID physicians offer specialized
medical care in 1. institutes related centres of expertise, 2.
centres for consultation and advice (CCE) for highly complex
needs, 3. outpatient clinics of (academic) hospitals, 4. centres
for psychiatric care.
In 2006 a conference was organized in consequence of a

questionnaire on outpatient clinics activities. Challenging
behaviour was the number 1 reason for referral. Procedures and
methods varied. The NVAVG has recently set up a committee to
further improve the quality of these activities.
Medical care for people with ID is substantially based on chronic
disease management. By increasing the outpatient clinics
activities the IDphysician can support chronic disease
management. Are the Australian and the Dutch systems drawing
nearer to each other?
Empowering individuals with intellectual disabilities

to improve their health and well-being
Sharon Milberger, Sc.D.
Henry Ford Health System, Center for Health Promotion
and Disease Prevention, Detroit, MI, USA
smilber1@hfhs.org
Research shows that the majority of individuals with intellectual
disabilities are overweight or obese which places them at
especially high risk for diabetes, heart disease, and a shortened
life expectancy. The Special Olympics has shown their strong
commitment to improving the health of athletes by providing
health services to thousands of athletes around the world.
However, changing health behavior is rarely a discrete, single
event. Rather behavior change has come to be understood as a
gradual process of identifiable stages through which individuals
pass. In response to this need, a pilot study is currently being
conducted focusing on Special Olympic athletes, their families,
coaches, staff and volunteers from Detroit, Michigan.
A group of key stakeholders has been convened regularly who
have designed a health promotion program that provides
athletes with the information, encouragement and facilities they
need to sustain physical fitness and healthy lifestyle choices.
Key elements included in the program are:
realistic goal setting
behavioral self-management skills
use of incentives, and
Hypothalamic Hamartoma: epilepsy, learning

disability and psychiatric problems
M.J.B.M. Veendrick-Meekes
veendrickm@kempenhaeghe.nl
W. van Blarikom
M.G. van Erp
Epilepsy Centre Kempenhaeghe, Heeze, The Netherlands
W.M.A. Verhoeven
The Netherlands
Erasmus University Medical Centre, Department of
Psychiatry, Rotterdam, The Netherlands
S. Tuinier
The Netherlands
Introduction
Hypothalamic Hamartomas (HH) are rare developmental
malformations that contain atypical proportions of neuronal
tissue elements. Its prevalence is estimated to be 1 in 50.000
to 100.000. Laughing (gelastic) seizures followed by multiple
seizure types and precocious puberty were related to HH.
Behavior deterioration and cognitive decline were described
as other symptoms present in patients with HH. In this study
we describe the clinical features of adult patients having HH.
This may help recognizing the symptoms in the individual patient
which may lead to the diagnosis by performing a MRI.
Methods
We performed a case study of 5 patients having HH. MRI results.
Localization and size were described. In all patients we
retrospectively studied epilepsy symptoms, cognitive decline
and somatic problems. We also described the neuropsychiatric
profile of each patient. Patients were assessed for psychiatric
symptoms by daily monitoring of behaviours.
family-and coach-friendly.
Results
A randomized experimental study design is being used where

one team was randomly selected to receive the health promotion
program and a second team was randomly chosen to serve as a
control group (N=30, 15 athletes on each team). Both formative
and summative data are currently being collected and will be
analyzed shortly.
All patients were suffering from treatment refractory epilepsy and

used combinations of several anti-epileptics. One patient
underwent stereo tactic radio-neurosurgery. All patients showed
cognitive decline. IQ ranges 75- 28. All patients showed obesity,
precocious puberty was found in 2 patients and 1 had
hypothyroidism. The psychopathological profile comprised
disturbances in behavioural regulation (aggression: n=4;
stereotypies: n=4; self-injurious behaviour: n=2), psychotic
phenomena (hallucinations, paranoid ideation and thought
disturbances: n=2) and mood symptoms ( n =3).
The conclusions and implications for policy, research, and

practice from this pilot study will be presented.
Conclusions
The clinical signs of HH should be considered as a syndrome with
a highly variable symptomatic expression depending on the size
and site of the hamartoma, the epilepsy and its treatment, the
dependence on environmental contingencies and at the same
time the inconsistent modulating influence of the environment.
23
Day three: Session two

Community impact of intranasal midazolam for
prolonged seizures
Margaret Kyrkou*
Children Youth and Womens Health Service,
Adelaide, Australia
kyrkou.margaret@cyh.sa.gov.au
Serendipity during haematologic analysis:

accessory spleen and its implications for
management
Galli M.L.
Chiodelli G.
Marchi L.
Fondazione Sospiro Cr, Northern Italy
giuseppe.chiodelli@fondazionesospiro.it
Michael Harbord
Flinders Medical Centre, SA, Australia
When managing a subject with a profound level of ID the

possibilities to make a correct medical diagnosis is often difficult
and delayed.
Nicole Kyrkou
Flinders University, SA, Australia
We present the case of a 63 years old man, living in a big

residential setting in Northern Italy, who were thought to suffer of
a myelodisplatic problem, till we found an abdominal disfunction.
Debra Kay
Department of Education and Childrens Services,
SA, Australia
Clinical history shows a malignant neuroleptic syndrome with a

strong tendency for infections (especially pneumonia type), in a
subject with profound MR diagnosis and motor problems, plus
leucopenic and thrombocytopenia. In 2004 he was hospitalized
because of Staphilococcus Aureus MRSA Pneumonia, with a
severe pancytopenia.
Kingsley Coulthard
Children Youth and Womens Health Service, Adelaide,
Australia
Rectal diazepam (RD), mainstay for managing prolonged
seizures in the community, is not appropriate for mobile students
in mainstream educational settings. An interagency working
party developed a protocol using intranasal midazolam (INM),
the training package providing information on epilepsy including
potential triggers, and safe first aid management, supplemented
by video clips of children seizuring. It includes side effects and
post administration effects, along with precautions when used
for prolonged seizures plastic 5 mg/1 ml ampoule, and test
dose when no previous exposure, supplemented by a video
demonstrating administration.
Initial survey revealed 145 parents and carers administered INM,
with 95.5% response, increasing to 97% with dose increase
based on weight, and only one minor adverse effect. 52 parents
had administered both RD and INM, 73% preferred INM, with a
further 10% happy with either. Questioned about perceived time
to have effect 39% of parents considered INM to be effective
within 2 minutes, with maximum time to response less than 10
minutes. By comparison, parents reported a slower response to
RD, with only 18% response within 10 minutes of administration.
For parents at home, this difference in response time represents
the difference between knowing the seizure has been safely
controlled, and calling an ambulance because of uncertainty
about resolution of the seizure without further treatment.
INM also offers a safe alternative for doctors, nurses and
ambulance officers when IV access is not possible, and has
revolutionised the safe management of prolonged seizures in the
community, reducing the need for transfer to hospital.
24
In December 2006 he had the same disease, but clinicians

decided to annul bone marrow exam because of his mental
conditions. After a chest X ray in December 2006, the
radiological image gave a suspect index: his left hemidiaphragm
was more elevated than right one. Ultrasound analysis showed
two spleens imagines previously unidentified, and he is now
waiting for an abdominal CT.
Was this morphological anomaly the cause of his haematologic
problems? This is one but not the only potential answer. But
which is the best way to manage the problem in order to improve
his Quality of Life indicators?
We suggest to strengthen intervention to monitor haematologic
functioning, and to prevent infections which could worse general
healths conditions.

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Welcome address from Convenor

Associate Professor Robert Davis

About the Centre for Developmental

The Centre was developed

since 2000. The Centre held

About the keynote speakers and facilitators

Ellen Nolte PhD

David M. OHara PhD

Dr Ellen Nolte is a Senior

Dr OHara is Vice President at

Ellen is a leading a team

David was the convenor of

The aim of this Roundtable

Day one: The current evidence base on chronic disease in people

Registration in the lobby

Main Lecture Theatre The Salone Room

The Salone Room Workshop (1 hr)

Sala Veneziana Room Workshop (1 hr)

Monitoring the health of People with Intellectual Disabilities

Educating health professionals Why, Who, What,

Discussion group 1 Salone Room

Discussion group 2 Sala Veneziana Room

Facilitator: Associate Professor Nick Lennox

Facilitator: Dr Seeta Durvasula

Poster session on the terrace during the Welcome Cocktail Party

Poster 1: Education of health

Poster 2: Predicting weekly step counts

Poster 3: Social cognition and

Developing Best Practice in Chronic Disease Management

Main Lecture Theatre

Parallel session one

Sala Veneziana Room

Chair: Helene Evenhuis

Chair: Helene Ouellette

Chair: Bob Davis

National chronic disease management

Developing Doctors who See People not

Health monitoring through GP data

Paper: The interface of disability and

AAIDD & QOL models applied to chronic

Aged Care for People with Intellectual

Chair: Helen Beange

Chair: Jenny Torr

Chair: Nick Lennox

Uneconomical care: Estimating the Cost

Chronic Diseases among Adults with

Surveying the Health of People with

How Nurses Assess Changes in Health

Adaptive behaviour in adults with Down

Client support system for both

The Health Experiences of People with

The Impact of a dual diagnosis

A safety net for detention of childhood

Discussion group 1 Salone Room

Discussion group 2 Sala Veneziana Room

Facilitator: Associate Professor Bob Davis

Facilitator: Dr Jane Tracy

Dinner at Cantina del Redi restaurant in Artimino

Day three: Developing models of health care for chronic

Parallel session one

Sala Veneziana Room

Chair: Nick Lennox

Day one: The current evidence base on chronic disease in people

Day three: Developing models of health care for chronic