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Monitoring the Health of People with Intellectual Disabilities within European Health Surveys

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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Monitoring the Health of People with Intellectual Disabilities within European Health Surveys

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  1. 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

  2. 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

  3. Outline of Presentation • Brief review of disparities – what we know • Addressing disparities through data – USA and UN initiatives • IASSID position statement • Surveying the surveys • European initiatives • Possible mechanism for the inclusion of people with ID in initiatives • Future steps

  4. Evidence of Health Disparities

  5. Evidence of Health Disparities Increased Mortality:Lower life expectancy Increased Morbidity:Epilepsy, sensory impairment, behavioural disorder Increase in negativeObesity & underweight, lowdeterminants employment, fewer socialof health:connections & meaningfulrelationships Access to services:Low rates of uptake of healthpromotion Quality of services:High rates of prescribed antipsychotic medication withno evidence of psychosis; highrates of unrecognised disease Kerr, 2004

  6. Factors Contributing to Health Disparities • Social circumstances characterised by low income, social isolation, vulnerability • Genetic factors such as thyroid problems associated with Down’s Syndrome • Environments such as those that are physically inaccessible • Environments that support inactivity, poor nutrition • Individual behaviours based on poor knowledge of healthy lifestyles • In adequate health care access that contributes to poor management of conditions such as epilepsy Krahn et al, 2006

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

  8. 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.

  9. 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)?

  10. 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)

  11. “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.” IASSID Position Statements on Health Disparity (Scheepers et al., 2005) “The prima facia evidence is that to date persons with ID are all but invisible within population surveys of larger disability samples” (p.250)

  12. Surveying the Surveys Are people with Intellectual Disability included in health surveys? Sampling frame – The European Health Interview Surveys & Health Examination Surveys Database (https://www.iph.fgov.be/hishes/) 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

  13. Surveys conducted between 1986 – 2005 (60%: 2000-2003) Profile HIS HES Surveys (N=123) https://www.iph.fgov.be/hishes/ • 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)

  14. Inclusion of population from ‘institution for people with mental handicap’ (available N=96) 19% YES 81% NO Profile HIS HES Surveys (N=123) https://www.iph.fgov.be/hishes/ • Use of Proxy (for children, adults not in home, adults not able to reply, institutionalised groups; available N=77) • 75% YES • 25% NO

  15. 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

  16. Europe’s Response to Narrow the Health Gap Acknowledging health disparity across Europe 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. The 2003-2008 Budget for this programme is €350 million

  17. 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. It will also require, as a key underpinning element, the continuing development of accurate, comparable and up to date health information. European Health Survey System (EHSS)

  18. 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?

  19. 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)

  20. 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?

  21. 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)

  22. 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 politicians accountable for health indicators and to advocate for increases in overall resources for health. Stansfield, S (2005) Bulletin of the World Health Organisation

  23. POMONA I & II PARTNERS 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) 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) www.pomonaproject.org

  24. ACKNOWLEDGEMENT Ms Frances Dawson, Researcher, UCD Centre for Disability Studies

  25. Thank you!

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