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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

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  • Ionad an Staidir Mhichumais UCD Scoil na Sceolaochta 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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  • IASSID Roundtable on Physical Health 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
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  • Outline of Presentation Brief review of disparities what we knowBrief review of disparities what we know Addressing disparities through data USA and UN initiativesAddressing disparities through data USA and UN initiatives IASSID position statementIASSID position statement Surveying the surveysSurveying the surveys European initiativesEuropean initiatives Possible mechanism for the inclusion of people with ID in initiativesPossible mechanism for the inclusion of people with ID in initiatives Future stepsFuture steps
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  • Evidence of Health Disparities
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  • 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
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  • Factors Contributing to Health Disparities Genetic factors such as thyroid problems associated with Downs 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
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  • Addressing 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.
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  • Attempts to measure health & disability: United 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.
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  • International approaches to measuring health & disability: United 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)?
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  • Invisibility of people with ID in public 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)
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  • IASSID Position Statements on Health Disparity (Scheepers et al., 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)
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  • Surveying 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 (
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  • Profile HIS HES Surveys (N=123) 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)
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  • Profile HIS HES Surveys (N=123) 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
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  • 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
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  • Need 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
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  • Europes Response to Narrow 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
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  • Proposed 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.
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  • Will people with Intellectual Disabilities be 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?
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  • Will people with Intellectual Disabilities be 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)
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  • Will people with Intellectual Disabilities be 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?
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  • 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)
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  • A final thought: There 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 politi

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