High Level Conference European Parliament Brussels Tuesday, 16 September 2008 EU MHADIE Project and its Health and Disability Policy Reccomendations Matilde Leonardi Coordinator of the Project Neurological Institute Carlo Besta IRCCS Foundation

MHADIE-Measuring Health and disability in Europe: Supporting policy development MHADIE is a three-year Coordination Action financed by the EU Commission, within the Sixth Framework Programme – coordinated by Dr. Leonardi Involves 16 European Centres and 10 different countries Aims to demonstrate the utility and feasibility of ICF model in measuring different types and prevalence of impairments and limitations.

MHADIE Partners Neurological Institute Carlo Besta IRCCS Foundation (I) World Health Organisation (CH) European Federation of Neurological Associations (B) Mälardalen University (S) Zurich University of Applied Sciences, School of Education (CH) Regione Autonoma Friuli Venezia Giulia–Agenzia Reg. Sanità (I) Institut Municipal d’Investigacio Medica (E) Regione Lombardia (I) National Authority for the Persons with Handicap (RO) National Disability Authority (IRL) Universidad Autonoma de Madrid (E) Ludwig-Maximilians-University Munich (D) Charles University (CZ) University Hospital of Hamburg (D) Institute for Rehabilitation, Republic of Slovenia (SI) CF consulting Finanziamenti Unione europea s.r.l. (I) ________________________________ SUBCONTRACTORS: Disability Italian Network – DIN (I) Don Gnocchi Foundation (I)

Clinical Area Universidad Autonoma de Madrid (E) Neurological Institute Carlo Besta IRCCS Foundation (I) World Health Organisation (INT) Malardalen University (S) Pädagogische Hochschule Zürich (CH) Regione Friuli Venezia Giulia – Agenzia Regionale Sanità (I) Institut Municipal d'Assistència Sanitària (E) Ludwig-Maximilians Universitaet Muenchen (D) Charles University (CZ) Rehabilitation Institute of the Republic of Slovenia (SI) Disability Italian Network – DIN (I) Don Gnocchi Foundation (I)

Statistical Area World Health Organisation (INT) Neurological Institute Carlo Besta IRCCS Foundation (I) Malardalen University (S) Pädagogische Hochschule Zürich (CH) Regione Friuli Venezia Giulia – Agenzia Regionale Sanità (I) Institut Municipal d'Assistència Sanitària (E) National Disability Authority (IRL) Universidad Autonoma de Madrid (E) Dept. of Medical Psychology –University of Hamburg (D) Rehabilitation Institute of the Republic of Slovenia (SI)

Education Area Pädagogische Hochschule Zürich (CH) World Health Organisation (INT) Malardalen University (S) Department of Medical Psychology – University of Hamburg (D)

Political Area Neurological Institute Carlo Besta IRCCS Foundation (I) World Health Organisation (INT) European Federation of Neurological Associations (B) Malardalen University (S) Pädagogische Hochschule Zürich (CH) Regione Friuli Venezia Giulia – Agenzia Regionale Sanità (I) Institut Municipal d'Assistència Sanitària (E) Regione Lombardia(I) National Authority for the persons with Handicap,Government of Romania (RO) National Disability Authority (IRL) Universidad Autonoma de Madrid (E) Ludwig-Maximilians Universitaet Muenchen (D) Charles University (CZ) Dept. of Medical Psychology –University of Hamburg (D) CF consulting Srl (I)

MHADIE European Conference Milan November 2007,

MHADIE Meeting Milan, March 2005 Madrid, June 2005 Dublin, November 2005 Prague, June 2006 Ljubljana, November 2006 Geneve, February 2007 Madrid, March 2007 Zurich, June 2007 Milan, November 2007 Madrid, April 2008

What is disability? Who are people with disability? How many people with disabilities are there in society? How do we assess the health needs of people?

These questions are essential to develop health and social policy for people with disabilities. Valid and reliable information about health and disability is essential to the design, implementation and evaluation of policies and legislation to combat discrimination and promote social integration, participation and enhance opportunities. Astonishingly, there is no uniform conception of disability that policy makers in different countries – or even within the same country – can use to plan health and social policy.

Definition of DISABILITY Difficulty in functioning at the body, person or societal levels, in one or more life domains, as experienced by an individual with a health condition in interaction with contextual factors. [Leonardi M, Bickenbach J, Ustun TB, Kostanjsek N, Chatterji S, on behalf of the MHADIE consortium (2006). The definition of disability: what is in a name? Lancet 368: ]

MHADIE primary objectives 1.To use the ICF model to evaluate existing sources of EU disability data, general population health surveys and education statistics data 2.To demonstrate that such a model is adequate to describe patterns of disability in clinical samples, and is useful to collect and analize data in clinical and educational sectors 3.To develop predictors of disability and environmental barriers to access in health care and full participation in society 4.To produce policy recommendation and guidelines concerning the use of ICF for effective and coherent health and social policies

The research conducted in MHADIE has demonstrated the feasibility, utility and value of the ICF, as a classification and model of disability and functioning for the harmonisation of data across populations and sectors in Europe. MHADIE results show the feasibility of a comprehensive description of disability, an evidence based definition of domains of functioning and disability, and the creation of a baseline reference population for comparisons, thereby increasing the EU capacity of analysis as requested by the EU disability Action Plan MHADIE main results

In this way, inequalities can be described and measured by the difference between opportunities for participation that persons with and those without difficulties in functioning experience. These inequalities define unmet needs associated with difficulties in functioning, including those created by discriminatory policies and practices. Identification of disability inequalities is not merely an EU priority, it is also mandated by the UN Convention for the Rights of People with Disabilities to which nearly all EU countries are signatories. MHADIE main results

MHADIE's results help to improve the accuracy and comparability of estimates of prevalence of disability Europe-wide. Harmonisation is the first step to the much needed integration of existing statistical information systems across nations, sectors and life span. MHADIE project is one of the instruments selected by the Commission to reach the fourth priority action by 2007 MHADIE main results

Policy Recommendations on health and disability in Europe The results of the MHADIE Project provide the background and justification for recommendations and guidelines that will help to design new European policy on health and disability.

By addressing the difficult policy challenge of defining planning guidelines for health, social and educational policy in Europe, MHADIE researchers have taken the essential first steps in addressing the following policy questions: How do we secure the mobility and comparability of health and disability data across EU countries? How can useful and comparable clinical data on functioning and disability be collected by means of ICF (International Classification of Functioning, Disability and Health)? How can we identify gaps in the data we need for health, disability and educational policy, and how can we fill those gaps? How can the data that is collected remain consistent and comparable across policy areas and between EU member states? Policy Recommendations on health and disability in Europe

General Policy Recommendations 1. Coordinate and integrate disability conceptualization at all policy levels. The underlying problem with the conceptualization of ‘disability’ found in EU disability policy is not the result of there being different definitions of disability, so much as the failure to create ‘fit for purpose’ definitions in accordance with the single, consistent and complete, underlying conception of disability provided by the ICF. We recommend that more work be done at the policy level to coordinate and integrate disability conceptualization at all policy levels.

General Policy Recommendations 2.Conduct longitudinal studies. Given the trajectory of the underlying health condition and the fact that a person's environment will change throughout his/her life, living with a disability is a dynamic, ever- changing experience. Because of this a complete understanding of disability in Europe requires longitudinal studies from children to old-age. We strongly recommend that such studies be conducted.

General Policy Recommendations 3. Review transportation policy at national and community level. Transportation policy is a key factor in participation rates of persons with disabilities, so this area of policy should be reviewed in light of the transportation requirements of persons with disabilities.

General Policy Recommendations 4. Emphasize and support family in EU countries. The family has been shown to be a substantial environmental facilitator in the lives of persons with disabilities, so disability policy should be reviewed to emphasize and support the role of the family.