Professional Documents
Culture Documents
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.
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)
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
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.
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 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
Morning tea
Parallel sessions one
12.30 pm 1.30 pm
1.30 pm 3.30 pm
Lunch
Roundtable discussion groups
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
Day two:
Dr Ellen Nolte
European Observatory on Health Systems and Policies
London School of Hygiene and Tropical Medicine
9.30 am 10.30 am
Salone Room
Room 3
10.30 am 11am
11 am 12.30 pm
Morning tea
Parallel session two
Salone Room
Room 3
Sala Veneziana
12.30 pm 1.30 pm
1.30 pm 3.30 pm
Lunch
Roundtable discussion groups
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
Dr David OHara
9.30 am 10.30 am
Salone Room
Room 3
10.30 am 11 am
11 am to 12.am
Morning tea
Parallel session two
Salone Room
Room 3
Workshop (1 hr)
Workshop (1 hr):
Lunch
AGM Health SIRG of IASSID
1.30 pm 3.30 pm
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
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
18
Evenhuis, Heleen
Evenhuis, Heleen
20
Ewals, Frans
22
Galli, M
24
Huisman, Sylvia
22
Koritsas, Stella
18
Kyrkou, Margaret
24
Lee, Lynette
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
19
Milberger, Sharon
23
Nolte, Ellen
15
OHara, David
Developing models of health care for chronic medical illnesses of people with intellectual
disability?
21
Ouellette-Kuntz, Helene
21
Perry, Jonathan
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
14
Torr, Jenny
Aged care for people with intellectual disability: care needs vs service systems
17
Tracy, Jane
13
Tracy, Jane
13
Tracy, Jane
Developing doctors who see people not pathology Victorian medical education in
developmental disability medicine
16
Van Schrojenstein
Lantman-de Valk, Henny
17
Veendrick-Meekes,
Monique
23
Wingbermuhle, Ellen
14
11
Abstracts
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
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
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
Centre for Developmental Disability Health Victoria,
Monash University, Melbourne, Australia
jane.tracy@med.monash.edu.au
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
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
Vincent van Gogh Institute for Psychiatry, Venray,
The Netherlands
Radboud University, Behavioural Science Institute/
Department of Clinical Psychology, Nijmegen,
The Netherlands
W.M.A. Verhoeven
Vincent van Gogh Institute for Psychiatry, Venray,
The Netherlands
Erasmus University Medical Centre, Department
of Psychiatry, Rotterdam, The Netherlands
wverhoeven@vvgi.nl
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
16
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.
Schellevis, F.J.
Netherlands Institute of Health Services Research NIVEL,
Utrecht
Department of General Practice, Vrije Universiteit Medical
Centre, Amsterdam, The Netherlands
17
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.
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.
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).
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.
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.
Aims
ocular abnormalities
suspicion of cerebral visual impairment
Requirements
Contacting
Hlne Ouellette-Kuntz
Queens University, Kingston, Ontario, Canada
Contents of
screening
around age
12 months
Refraction
Ocular abnormalities
Visual behaviour
impairment?
cerebral visual
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.
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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.
Frans Ewals
University Rotterdam, The Netherlands
frans.ewals@quicknet.nl
Sylvia Huisman
ID physician Prinsenstichting Purmerend, The Netherlands
sahuisman@tiscali.nl
22
W. van Blarikom
M.G. van Erp
Epilepsy Centre Kempenhaeghe, Heeze, The Netherlands
W.M.A. Verhoeven
Vincent van Gogh Institute for Psychiatry, Venray,
The Netherlands
Erasmus University Medical Centre, Department of
Psychiatry, Rotterdam, The Netherlands
S. Tuinier
Vincent van Gogh Institute for Psychiatry, Venray,
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
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.
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Michael Harbord
Flinders Medical Centre, SA, Australia
Nicole Kyrkou
Flinders University, SA, Australia
Debra Kay
Department of Education and Childrens Services,
SA, Australia
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