cddhv conference proceedings

8/17/2019 Cddhv Conference Proceedings

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Welcome address from Convenor

Associate Professor Robert Davis

Director CDDHVWith 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 togetherkey 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 O’Hara 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 University’s 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.

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.

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


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About the Centre for DevelopmentalDisability Health Victoria (CDDHV)

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 developmentaldisabilities

• 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), StateGovernment 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 DevelopmentalDisability 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 inSouth 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 aschair, 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 willbe 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

The mission of the CDDHV, an academic unit established by the Victorian State

Government is to improve health outcomes for people with developmental disability byenhancing 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.

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


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Jane TracyMBBS (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

Centre’s formation she worked

in the Monash Developmental

Disability Unit and the

Developmental Disability Clinic

and Spina Bifida Clinics atMonash 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

Centre’s 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 developmentaldisability. She is involved in

research into mental health

disorders in people with

intellectual disability with a

focus on depressive disorders

and dementia.

Nick LennoxMBBS 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) forpeople 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 DurvasulaMBBS, 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 andresearch 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 Children’s Hospital,

Westmead and Affiliate

Physician, St Georges

Hospital.


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The Program

Day one: The current evidence base on chronic disease in peoplewith 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 Morning tea

11 am – 12.30 pm Parallel sessions one

The Salone Room – Workshop (1½ hr) Sala Veneziana Room – Workshop (1½ 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 Lunch

1.30 pm – 3.30 pm Roundtable discussion groups

Discussion group 1 – Salone Room

Facilitator: Associate Professor Nick Lennox

Discussion group 2 – Sala Veneziana Room

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 Afternoon tea

4 pm – 5 pm 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 O’Hara, 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.

Wingbermühle* et al


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Day two: Developing Best Practice in Chronic Disease ManagementMain 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

Chair: Helene Evenhuis

Room 3

Chair: Helene Ouellette

Sala Veneziana Room

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 Morning tea

11 am – 12.30 pm Parallel session two

Salone Room

Chair: Helen Beange

Room 3

Chair: Jenny Torr

Sala Veneziana

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. Määtä* 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 Self–Determination. LeRoy*

A safety net for detention of childhood

visual impairment in at risk groups.

Evenhuis*

12.30 pm – 1.30 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.



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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 chronicmedical illness

Main Lecture Theatre


Developing models of health care for chronic medical illnesses of people with intellectual disability?

Dr David O’Hara

9.30 am – 10.30 am Parallel session one

Salone Room

Chair: Nick Lennox

Room 3

Chair: Jane Tracy

Sala Veneziana Room

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 Morning tea

11 am to 12.am Parallel session two

Salone Room

Chair: Mike Kerr

Room 3

Workshop (1 hr)

Sala Veneziana Room

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


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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



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 O’Hara


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Index of abstracts

Presenter Topic Page

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 andsocial supports for persons with ID

18

Evenhuis, Heleen Multimorbidity and care management Back

cover

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 disabil ity: a longitudinal study 18Kyrkou, 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 disabili ty from research to policy and

practice

Back

cover

LeRoy, Barbara The impact of a dual diagnosis (intellectual disabil ity 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

Määttä, 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

O’Hara, David Developing models of health care for chronic medical il lnesses 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 disabili ties 20

Ramsay, Tracy Addressing health disparities for people with intellectual disability living in residential

settings – a New Zealand Service Providers model

22


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Presenter Topic Page

Temple, Viviene Predicting weekly step counts of adults with intellectual disabili ty 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 disabi lity medicine – par t 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 disabili ty and psychiatr ic problems 23

Wingbermuhle, Ellen Social cognition and psychopathology in Noonan syndrome 14


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Abstracts

Day one: First keynote address

The current evidence base on chronic disease in

people with intellectual disability or the burden ofdisease in people with ID: A review of the literature

on prevalence of chronic disease and vulnerabilitiesin people with ID

Associate Professor Bob Davis

Director, Centre for Developmental Disability Health

Victoria, Monash University

[email protected]

Day one: Session one – Workshop 1

Monitoring the health of people with intellectual

disabilities within European health surveys

Linehan, C.

Centre for Disability Studies, School of Psychology,

UCD Dublin, Ireland

[email protected]

Walsh, P.N.

Centre for Disability Studies, School of Psychology,

UCD Dublin, Ireland

[email protected]

Van Schrojenstein Lantman-de Valk, H.

Department of General Practice, Maastricht University,

Maastricht, The Netherlands

[email protected]

Kerr, M.

Department of Psychological Medicine, The Welsh Centre

for Learning Disabilities, Cardiff University, Wales, UK

[email protected]

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 Pomona-

1 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.


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Day one: Session one – Workshop 2

Educating health professionals –

Why, Who, What, When & How?

Tracy, J

Centre for Developmental Disability Health Victoria,

Monash University, Melbourne, Australia

[email protected]

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 havesubsequently 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 barriersto 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.

Day one: Poster one

Education of health professionals in developmental

disability medicine – part of a solution to the poorhealth status of people with a disability

Tracy, J



[email protected]

This poster will outline:

1. The health inequities between people with a disability and

the general population in terms of barriers to healthcareencountered 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.


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Day one: Poster two

Predicting weekly step counts of adults with

intellectual disability

Viviene A. Temple*

University of Victoria, British Columbia, Canada

[email protected]

Heidi L. Stanish

University of Massachusetts Boston, USA

[email protected]

Engaging in regular physical activity is an investment in individual

and community health; and promoting physical activity amongpeople 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 digi-

walkers 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, 4-

day, 5-day, and 6-day steps counts to predict average weekly

steps. Participants averaged 8143 ± 3790 steps per day over theseven 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.

Day one: Poster three

Social cognition and psychopathology in

Noonan syndrome

P.A.M. Wingbermuhle

Vincent van Gogh Institute for Psychiatry, Venray,

The Netherlands

[email protected]

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

[email protected]

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 psychiatricprofile 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 withNoonan 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.


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Day two: Second keynote address

Responding to the epidemic of chronic disease

Dr Ellen Nolte

European Observatory on Health Systems and Policies

London School of Hygiene and Tropical Medicine, UK

[email protected]

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.

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.

Day two: Session one

National chronic disease management strategies

and their relevance to people with intellectualdisability

Dr Seeta Durvasula

Centre for Developmental Disability Studies,

University of Sydney, Sydney, Australia

[email protected]

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, themajor 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.


16/2416

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

[email protected]

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 livingin 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 ofother 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.

Developing doctors who see people not pathology

– Victorian Medical Education in DevelopmentalDisability Medicine.

Dr Jane Tracy

Centre for Developmental Disability Health Victoria, Monash

University, Melbourne, Australia

[email protected]

To create tomorrow’s doctors we must work with today’s

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 inDevelopmental 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 CDDHV’s 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 originallydesigned for undergraduate students have formed the

foundation for sessions provided for practicing general

practitioners and psychiatrists.

This paper will br iefly 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.


17/2417

AAIDD and QOL models applied to chronic disease

management changes lives for 408 ID subjectsChiodelli G.

Corti S.

Leoni M.

Galli L.

Fioriti F.

Fondazione Sospiro, Cr, Northern Italy

[email protected]

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%, and60% 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

[email protected]

Straetmans, J.M.J.A.A.

Department of ENT, University Hospital Maastricht,

The Netherlands

Schellevis, F.J.

Netherlands Institute of Health Services Research NIVEL,

Utrecht

Department of General Practice, Vrije Universiteit Medical

Centre, Amsterdam, The Netherlands

Dinant, G.J.

Department of General Practice, and Care and PublicHealth 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



[email protected]

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 Alzheimer’s

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 currentunderstanding 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.


18/2418

Day two: Session two

Uneconomical care: estimating the cost of

inadequate integration of healthcare and socialsupports for persons with ID

Deborah Elliott MD FRCPC

Queen’s University, Kingston, Ontario, Canada

[email protected]

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 bediscussed. 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

[email protected]

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:

• 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 intellectualdisability: a longitudinal study

Stella Koritsas

Teresa Iacono

Robert Davis



[email protected]

[email protected]

[email protected]

David HamiltonInstitute of Disability Studies, Deakin University,

Melbourne, Australia

[email protected]

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 (rangedbetween 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.


19/2419

The management of obesity and other related

chronic diseases among adults with intellectualdisabilities

Dr Joel Levy*

YAI/NIPD, New York, USA

[email protected]

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 ashypertension 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 utilizedto 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 Määttä*

The Joint Authority for Kainuu, Finland

[email protected]

Tuula Tervo-Määttä

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 Alzheimer´s

disease.

Methods

The principal author evaluated the adaptive behaviour in adultswith 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 Alzheimer´s

disease and to monitor the progression of the disease.

Alzheimer´s disease was confirmed and treated in many of theelderly 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 Alzheimer´s 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 Tynjälä).

The impact of a dual diagnosis (intellectual disabilityand 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

[email protected]

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 toachieve self-determination.


20/2420

In order to determine the impact of a dual diagnosis on self-

determination, 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 self-

determination, 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 andthe 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

[email protected]

[email protected]

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 adecision 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

[email protected]

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 bepresented.

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

[email protected]

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.


21/2421

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 Early detection of:

• refractive errors

• ocular abnormalities

• suspicion of cerebral visual impairment

Requirements Limited number of screening moments,

to facilitate participation

More extensive assessment than in

regular screening orthoptic/

ophthalmologic referral

Contacting 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 cerebral visual

impairment?

Screening questionnaire for cerebral visual

impairment?

Contents of

screening

around 4

years

Fixation and following

Strabismus

Visual acuity (Lea or Stycar test)

Day three: Third Keynote Address

Developing models of health care for chronic

medical illnesses of people with intellectualdisability?

Dr David O’Hara

Vice President for Development, Westchester Institute for

Human Development (WIHD), New York State, USA.

[email protected]

Day three: Session one

Organising health care services for persons withan intellectual disability – a systematic review

Hélène Ouellette-Kuntz

Queen’s University, Kingston, Ontario, Canada

[email protected]

Robert Balogh

[email protected]

Angela Colantonio

Laurie BourneUniversity 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 ofthose 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.


22/2422

Addressing health disparities for people with

intellectual disability living in residential settings –a New Zealand Service Providers model

Tracey Ramsay

[email protected]

Wendy Rhodes

IHC New Zealand (NZ) Inc, Wellington, New Zealand

[email protected]

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 provider’s 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.

• Learning’s and reflection of our experiences over the past

8 years and challenges ahead.

• Outline some options for future service delivery to achieve

improved health outcomes for people.

A new competence profile for ID physician

Frans Ewals

ID physician Erasmus University Rotterdam,

The Netherlands

[email protected]

Sylvia Huisman

ID physician Prinsenstichting Purmerend, The Netherlands

[email protected]

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).

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 thecompetence 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 tohospital

Sylvia Huisman

ID physician Prinsenstichting Purmerend, the Netherlands

[email protected]

Frans Ewals

University Rotterdam, The Netherlands

[email protected]

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. centresfor psychiatric care.


23/2423

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

[email protected]

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 beingconducted 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

• family-and coach-friendly.

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.

The conclusions and implications for policy, research, and

practice from this pilot study will be presented.

Hypothalamic Hamartoma: epilepsy, learning

disability and psychiatric problemsM.J.B.M. Veendrick-Meekes

[email protected]

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.

Results

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).

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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Day three: Session two

Community impact of intranasal midazolam for

prolonged seizures

Margaret Kyrkou*

Children Youth and Women’s Health Service,

Adelaide, Australia

[email protected]

Michael Harbord

Flinders Medical Centre, SA, Australia

Nicole Kyrkou

Flinders University, SA, Australia

Debra Kay

Department of Education and Children’s Services,

SA, Australia

Kingsley Coulthard

Children Youth and Women’s 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 10minutes. 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.

Serendipity during haematologic analysis:

accessory spleen and its implications formanagement

Galli M.L.

Chiodelli G.

Marchi L.

Fondazione Sospiro Cr, Northern Italy

[email protected]

When managing a subject with a profound level of ID the

possibilities to make a correct medical diagnosis is often difficult

and delayed.

We present the case of a 63 years old man, living in a big

residential setting in Northern Italy, who were thought to suffer ofa myelodisplatic problem, till we found an abdominal disfunction.

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.

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 nowwaiting 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

health’s conditions.

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