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Ionad an Staidéir Mhichumais UCD UCD Centre for Disability Studies The Development of a European Set of Health Indicators for People with Intellectual.

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Presentation on theme: "Ionad an Staidéir Mhichumais UCD UCD Centre for Disability Studies The Development of a European Set of Health Indicators for People with Intellectual."— Presentation transcript:

1 Ionad an Staidéir Mhichumais UCD UCD Centre for Disability Studies The Development of a European Set of Health Indicators for People with Intellectual Disability Linehan, C., Walsh, P.N., Kerr, M & Van Schrojenstein Lantman-de Valk 13th European Conference on Public Health Promoting the Public’s Health Graz, Austria 10-12 November 2005

2 This Presentation What is Intellectual Disability? What is Health Status & Access to Health Care like for people with Intellectual Disability? What Health Monitoring is undertaken? What is the POMONA Project? What future work is needed?

3 Defining Intellectual Disability Intellectual Disability, Learning Disability, Mental Retardation A disability characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18 Prevalence Difficult to establish – WHO (2001) estimates suggest approximately 5 million people with Intellectual Disability reside in EU.

4 Disparity: Health Status Special Olympics (Horwitz et al., 2000)  Higher rates of obesity  Lower levels of cardiovascular fitness  Lower levels of vaccination  Higher level of mental health disorders  Poorer oral health  Poorer access to health screening

5 Disparity: Access to Health Care Less likely to receive adequate health care despite the increased health problems Perception remains of the need for ‘specialist health care’ Generic health care services ‘uncomfortable’ or ‘inexperienced’ in providing care Barriers to health care include discrimination, stigmatisation & stereotypical beliefs about people with intellectual disability

6 Addressing the Disparity (US) Closing the Gap (2002) States: “People with disabilities: (i) experience poorer health status (ii) are more susceptible to ill health (iii) have limited access to treatment (iv) may be excluded from health promotion opportunities” Gloria Krahn (p. A-10)

7 Health Monitoring (US) US Surgeon General, (2002, p.5) states: “The lack of population based data on prevalence of (Intellectual Disability) and the health status and service needs of this population impedes planning and allocating resources for their care” National Core Indicator Project Established since 1996 – now includes 24 states Broader than health indicators – social etc. Survey sample method Each state, N=400 service users >18 years

8 Health Monitoring (EU) Article 152 of the Amsterdam Treaty obliges the EU to ensure health protection in implementing all Community policies and activities Programme of Community Action in the Field of Public Health (2003-2008) - Improving health information and knowledge - Responding rapidly to health threats - Addressing health determinants

9 EU Development of Health Indicators ECHI European Community Health Indicators (Kramers) ( January 2005 – shortlist 82 Items, 46 available Demographics Health Status Health Determinants Health Interventions: services & promotion Until now People with Intellectual Disability largely excluded

10 Funded by DG Health and Consumer Protection, European Commission Health Indicators for People with Intellectual Disabilities (2002-2004) – Developing an Indicator Set Health Indicators for People with Intellectual Disabilities (2005-2008) – Applying an Indicator Set

11 Why develop health indicators for persons with intellectual disabilities? There is considerable evidence about health disparities between people with intellectual disabilities and the general population In the enlarged EU (since May 2004), there are an estimated 5 million persons with intellectual disabilities The ECHI report (2001) did not include evidence about the healthy ageing of persons with intellectual disabilities – and they are excluded from the ECHI 2 shortlist Monitoring systems in the Member States do not typically document the health of citizens with intellectual disabilities

12 Generic EU Health Data Sources HIS/HES Review of the European Health Interview & Health Examination Surveys Database (N=54 omnibus surveys) – no systematic inclusion HIPE In the ‘Hospital In-patient Enquiry System’, intellectual disability is coded but compliance with completing the data reports is an issue

13 Public health and people with ID in Europe Attempts to monitor health of people with ID are hampered by a lack of available data –Prevalence not yet determined – United Nations –National registers are rare – Ireland – Census type data are not available as a denominator –For the moment – we rely on sample surveys

14 Pomona 2002-2004 Partners from 13 EU countries worked together to develop an evidence-based set of 18 health indicators. Review of literature on evidence relating to healthy of persons with intellectual disabilities Summary evidence from each Member State about systems in place to monitor the health of the general population and also those with intellectual disabilities Consultation with advocates – family members- experts in each Member State Collaborative meetings to appraise the initial list of indicators and to agree on the final list of 18 indicators

15 Selecting European Community Health Indicators Scientific principles to guide process Indicators should meet methodological, quality criteria Flexible - meet changing policy interests Base selection on existing and comparable datasets –ECHI Report 2001 (available on SANCO website)

16 Pomona: Final set of 18 indicators Demographic Prevalence Living arrangements Daily Occupation Income/status Life Expectancy Health Status Epilepsy Oral health BMI Mental Health Sensory Mobility Determinants Physical activity Challenging behaviour Psychotropic medication use Health Systems Hospitalisation, contact with health care professionals Health check Health promotion Specific training for physicians

17 Partners in Pomona-2 (2005-2008) Germain Weber - Austria Geert van Hove - Belgium Tuomo Maatta - Finland Bernard Azema - France Meindert Haveman - Germany PN Walsh - Ireland Serafino Buono - Italy Arunas Germanavicius - Lithuania Jan T ø ssebro - Norway Alexandra Carmen Cara - Romania Dasa Moravec Berger-Slovenia Luis Salvador Carulla - Spain MP Kerr – Wales, UK HMJ van Schrojenstein Lantman-de Valk – the Netherlands Christine Linehan – Ireland (Project Manager)

18 Pomona-2 Workplan (2005-2008) –Operationalize the set of 18 health indicators –Gather data on samples of people in 14 Member States –Consult Member State, EU and WHO levels –Share findings publications, conference presentations etc –Inform policy in each Member State and also through the EU Public Health structures

19 Some challenges Develop reliable, valid measures of the health indicators Respect local and regional ethical procedures Translate the measures and apply in 14 countries with very varied health systems and traditions of support for people with intellectual disabilities Consult effectively with people who have disabilities, family members, health professionals, policy makers

20 Further Information Christine Linehan Senior Researcher Centre for Disability Studies, B207 UCD Geary Institute University College Dublin, Belfield, Dublin 4 Ireland Email:

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