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Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People with Intellectual Disabilities within European Health Surveys Ms Christine Linehan Prof Patricia Noonan Walsh Dr Henny van Schrojenstein Lantman-de Valk Prof Mike Kerr on behalf of the POMONA Project

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Page 1: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

Ionad an Staidéir Mhichumais UCD

Scoil na Síceolaíochta UCD

UCD Centre for Disability Studies

UCD School of Psychology

Monitoring the Health of People with Intellectual Disabilities within European

Health Surveys

Ms Christine Linehan

Prof Patricia Noonan Walsh

Dr Henny van Schrojenstein Lantman-de Valk

Prof Mike Kerr

on behalf of the POMONA Project

Page 2: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

IASSID Roundtable on Physical IASSID Roundtable on Physical Health Special Interest GroupHealth Special Interest Group

“Chronic Disease Management in People with Developmental Disability”

Monash University, Prato, Italy

20-23 May 2007

Organised by

Centre for Developmental Disability Health, Victoria, Monash University, Australia

Page 3: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

Outline of PresentationOutline of Presentation

• Brief review of disparities – what we knowBrief review of disparities – what we know

• Addressing disparities through data – USA Addressing disparities through data – USA and UN initiativesand UN initiatives

• IASSID position statementIASSID position statement

• Surveying the surveysSurveying the surveys

• European initiatives European initiatives

• Possible mechanism for the inclusion of Possible mechanism for the inclusion of people with ID in initiativespeople with ID in initiatives

• Future stepsFuture steps

Page 4: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

Evidence of Health DisparitiesEvidence of Health Disparities

Page 5: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

Evidence of Health DisparitiesEvidence of Health Disparities Increased Mortality: Lower life expectancy

Increased Morbidity: Epilepsy, sensory impairment, behavioural disorder

Increase in negative Obesity & underweight, low determinants employment, fewer social of health: connections & meaningful

relationships

Access to services: Low rates of uptake of health promotion

Quality of services: High rates of prescribed antipsychotic medication with no evidence of psychosis; high rates of unrecognised disease

Kerr, 2004

Page 6: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

Factors Contributing to Health DisparitiesFactors Contributing to Health Disparities• Genetic factors such as thyroid problems associated

with Down’s Syndrome

• Social circumstances characterised by low income, social isolation, vulnerability

• Environments such as those that are physically inaccessible

• Individual behaviours based on poor knowledge of healthy lifestyles

• Environments that support inactivity, poor nutrition

• In adequate health care access that contributes to poor management of conditions such as epilepsy

Krahn et al, 2006

Page 7: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

Addressing Health DisparitiesAddressing Health Disparities

Objective 6-1: Include in the core of all relevant Healthy People 2010 surveillance instruments a standardized set of questions that identify "people with disabilities”

Aim: Promote the health of people with disabilities, prevent secondary conditions, and eliminate disparities between people with and without disabilities in the U.S. population.

Healthy People 2010 is a set of health objectives for the US to achieve over the first decade of the new century.

Page 8: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

Attempts to measure health & disability:Attempts to measure health & disability:United Nations Washington GroupUnited Nations Washington Group

The Washington Group has developed a short question set for use on censuses and national surveys for gathering information about limitations in basic activities in national populations.

The questions were designed to provide comparable data cross-nationally for populations regardless of culture or economic resources. The objective is to identify persons with similar types and levels of limitations in basic activities regardless of nationality or culture.

Page 9: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

International approaches to measuring International approaches to measuring health & disability:health & disability:

United Nations Washington GroupUnited Nations Washington Group

Do you have difficulty seeing, even if wearing glasses? Do you have difficulty hearing, even if using a hearing aid? Do you have difficulty walking or climbing steps? Do you have difficulty remembering or concentrating?

Additional Questions:Do you have difficulty (with self-care such as) washing all over or dressing?Because of a physical, mental of emotional health condition, do you have difficulty communicating, (for example understanding others or others understanding you)?

Page 10: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

Invisibility of people with ID in Invisibility of people with ID in public health monitoring systemspublic health monitoring systems

“Persons with ID should not be subsumed into a broad “disability population” definition, because additional factors, which may affect health outcomes, play significant roles that require specific attention to the needs of people with a range of syndromes, but having in common cognitive difficulties”. (p.250)

(Scheepers et al, 2005, p.250)

Page 11: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

IASSID Position Statements on Health IASSID Position Statements on Health Disparity (Scheepers Disparity (Scheepers et al.,et al., 2005) 2005)

“Surveys and data systems should identify persons with ID, as recognition can then be used to facilitate measurement of

all aspects of health and reduce health disparities.”

“The prima facia evidence is that to date persons with ID are all but invisible within population surveys of larger disability samples” (p.250)

Page 12: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

Surveying the SurveysSurveying the Surveys

Are people with Intellectual Disability included in health surveys?

Aromaa, A, Koponen, P , Tafforeau, J, Vermeire, C and The HIS/HES Core Group (2003) Evaluation of Health Interview Surveys and Health Examination Surveys in the European Union. The European Journal of Public Health 2003 13(Supplement 1):67-72

Sampling frame – The European Health Interview Surveys & Health Examination Surveys Database

(https://www.iph.fgov.be/hishes/)

Page 13: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

0 5 10 15 20 25 30

AUSTRIA

BELGIUM

DENMARK

FINLAND

FRANCE

GERMANY

IRELAND

ITALY

LITHUANIA

LUXEMBOURG

NETHERLANDS

NORWAY

ROMANIA

SLOVENIA

SPAIN

SWEDEN

UK

European Countries

Number of Health Interview/Examination Surveys examined in 14 European Countries (N=123)

European Countries

European Countries 4 4 2 17 15 6 10 6 4 8 5 4 1 2 5 4 26

AUSTRIA BELGIUM DENMARK FINLAND FRANCE GERMANY IRELAND ITALY LITHUANIALUXEMBO

URGNETHERLA

NDSNORWAY ROMANIA SLOVENIA SPAIN SWEDEN UK

Page 14: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

Profile HIS HES Surveys (N=123) Profile HIS HES Surveys (N=123) https://www.iph.fgov.be/hishes/https://www.iph.fgov.be/hishes/

• Surveys conducted between 1986 – 2005 (60%: 2000-2003)

• Scope (available on N=101) – ranging N=1,000 for Euro-barometers in Luxembourg to N=10,296,350 for Belgium General Socio- Economic Survey 2001 (census)

Page 15: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

Profile HIS HES Surveys (N=123) Profile HIS HES Surveys (N=123) https://www.iph.fgov.be/hishes/https://www.iph.fgov.be/hishes/

• Inclusion of population from ‘institution for people with mental handicap’ (available N=96)

– 19% YES– 81% NO

• Use of Proxy (for children, adults not in home, adults not able to reply, institutionalised groups; available N=77)

– 75% YES– 25% NO

Page 16: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

DEMOGRAPHICS

(1%) Prevalence

(9%) Living Arrangements

(0%) Life Expectancy

(50%) Daily Occupation

(36%) Income/SES status

HEALTH STATUS

(14%) Epilepsy

(34%) Oral Health

(62%) Body Mass Index

(51%) Mental Health

(42%) Sensory

(39%) Mobility

DETERMINANTS OF HEALTH

(45%) Physical Activity

(0%) Challenging Behaviour

(52%) (Psychotropic) Medication

HEALTH SYSTEMS

(58%) Health Check

(18%) Health Promotion

(0%) Specific training for Physicians in Intellectual Disability

(63%) Hospitalisation & Contact with Health Care Professionals

Page 17: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

HIS HES by possibility of extracting health data on behalf of participants with Intellectual Disability

0 5 10 15 20 25 30

AUSTRIA

BELGIUM

DENMARK

FINLAND

FRANCE

GERMANY

IRELAND

ITALY

LITHUANIA

LUXEMBOURG

NETHERLANDS

NORWAY

ROMANIA

SLOVENIA

SPAIN

SWEDEN

UK

Eu

rop

ean

Co

un

trie

s

Not possible Possible but small N Possible

Possible 0 0 0 0 2 0 0 0 1 0 0 0 0 0 1 0 0

Possible but small N 0 0 2 2 0 0 0 0 0 0 3 2 0 0 0 0 19

Not possible 3 4 0 15 7 3 9 0 2 5 1 0 0 0 3 4 5

AUSTRIA BELGIUM DENMARK FINLAND FRANCEGERMAN

YIRELAND ITALY

LITHUANIA

LUXEMBOURG

NETHERLANDS

NORWAY ROMANIASLOVENI

ASPAIN SWEDEN UK

Page 18: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

Need for Systematic Health MonitoringNeed for Systematic Health Monitoring

• How might this happen?

• Recognition of the need to monitor the health of people with disabilities through census/national surveys

• Recognition of the need to include people with ID in these health monitoring activities

Page 19: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

Europe’s Response to Europe’s Response to Narrow the Health GapNarrow the Health Gap

Community Action on Health Monitoring Programme aims to produce a health monitoring system to monitor the health status in the community, facilitate the planning, monitoring and evaluation of Community programmes and to provide Member States with information to make comparisons and to support their national policies.

Acknowledging health disparity across Europe

The 2003-2008 Budget for this programme is €350 million

Page 20: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

Proposed European Health StrategyProposed European Health Strategy

The European Commission is currently developing a new Health Strategy which it aims to adopt in summer 2007.

A core issue of the Health Strategy is to help reduce health inequalities, narrowing health gaps within and between countries.

European Health Survey System (EHSS)

It will also require, as a key underpinning element, the continuing development of accurate, comparable and up to date health information.

Page 21: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People
Page 22: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

Will people with Intellectual Disabilities be Will people with Intellectual Disabilities be included in the European Health System?included in the European Health System?

Minimum European Health Module (MEHM)

CONDUCTED ANNUALLY IN EUROPE

Restricted to 3 variables:

• How is your health in general?

• Do you suffer from (have) any (long standing) illness or condition (health problem)?

• For the past 6 months or more have you been limited in activities people usually do because of a health problem?

Page 23: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

Will people with Intellectual Disabilities be Will people with Intellectual Disabilities be included in the European Health System?included in the European Health System?

European Health Interview Survey (EHIS)

CONDUCTED EVERY 5 YEARS IN EUROPE

Comprises 4 components:

• EHSM (Health Status includes MEHM)

• EHDM (Health Determinants)

• EHCM (Health Care)

• EBM (Background Variables)

Page 24: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

Will people with Intellectual Disabilities be Will people with Intellectual Disabilities be included in the European Health System?included in the European Health System?

European Special Health Interview Surveys

CONDUCTED WHEN APPROPRIATE

• This component comes under the Community Public Health Programme – which funds POMONA Health Indicators for People with Intellectual Disabilities

• According to the Europa website these modules will focus on ICF and mental health issues

• Is this the route to systematic health monitoring for people with Intellectual Disabilities?

Page 25: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

Future Developments?Future Developments?

• POMONA Partnership can open negotiations with the European Health Survey System given its representation on the European Commission Working Group of Morbidity and Mortality Working Party (MMWP) and the Task Force on Major and Chronic Diseases (TFMCD)

Page 26: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

A final thought: A final thought: There is Strength in NumbersThere is Strength in Numbers

• Health information systems have been shown to deliver cost savings and improve health outcomes.

• Information has also been used to hold politicians accountable for health indicators and to advocate for increases in overall resources for health.

Stansfield, S (2005) Bulletin of the World Health Organisation

Page 27: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

Prof Patricia Noonan Walsh & Christine Linehan (Project Manager) (IE)

Prof Germain Weber (AT)

Prof Geert van Hove (BE)

Prof Meindert Haveman (DE)

Mr Frank Ulmer Jørgensen (DK)

Dr. Tuomo Määttä (FI)

Prof Charles Aussilloux & Dr Bernard Azema (FR)

Dr. Serafino Buono (IT)

Dr. Arunas Germanavicius (LT)

Dr. Raymond Ceccotto (LU)

Dr. Jan Tøssebro (NO)

Dr Henny van Schrojenstein Lantman-de Valk (NL)

Dr. Luis Salvador (ES)

Dr. Alexandra Carmen Cara (RO)

Dr. Monica Björkman (SE)

Dr. Dasa Moravec Berger (SI)

Prof Mike Kerr (UK)

POMONA I & II PARTNERSPOMONA I & II PARTNERS

www.pomonaproject.org

Page 28: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

ACKNOWLEDGEMENTACKNOWLEDGEMENT

Ms Frances Dawson, Researcher, UCD Centre for Disability Studies

Page 29: Ionad an Staidéir Mhichumais UCD Scoil na Síceolaíochta UCD UCD Centre for Disability Studies UCD School of Psychology Monitoring the Health of People

Thank you!Thank you!