Skip to main content

MHADIE (Measuring Health and Disability in Europe: Supporting Policy Development) Project | ERI SEE

MHADIE (Measuring Health and Disability in Europe: Supporting Policy Development) Project

The EU MHADIE (Measuring Health and Disability in Europe:
Supporting Policy Development) Project

 

1. Brief Description

 

The European Commission’s 6 FP Project MHADIE: Measuring
Health and Disability in Europe: Supporting policy development
was a
multi-country coordination action and was led by Dr. Matilde Leonardi of the
Neurological Institute "Carlo Besta" IRCCS Foundation of Milan, Italy. It
brought together centres and experts from the Czech Republic, Germany, Ireland,
Italy, Romania, Switzerland, Slovenia, Spain, Sweden as well as the World Health
Organisation (WHO) and the European Federation of Neurological Associations
(EFNA).

 

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. The aim of MHADIE researchers was to further the goal of
developing realistic, evidence-based and effective social policies for persons
with disabilities that will achieve equality of opportunities and full
participation.

 

Further information about MHADIE


MHADIE Website: www.mhadie.it

 

“Lancet” paper about MHADIE’s proposed generic definition of
disability:
Leonardi M, Bickenbach J, Ustun TB, Kostanjsek N, Chatterji S,
on behalf of the MHADIE Consortium: The definition of disability: what is in a
name? The Lancet - Vol. 368, Issue 9543, 07 October 2006, Pages 1219-1221.

www.thelancet.com

 

Submission to EU Commissioner Vladimir Spidla concerning a
definition of disability in the UN Convention on the Rights of Persons with
Disabilities:
www.mhadie.it/publications.aspx

 

 

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 2006-2007. 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 on the Rights of People with Disabilities to
which nearly all EU countries are signatories.

 

By providing a common framework for defining and measuring
disability, MHADIE's results help to improve the accuracy and comparability of
estimates of prevalence of disability. The methodology used and the systems
developed during the research period have begun the process of harmonising
disparate disability and health data sets collected at national and
international levels. Harmonisation is the first step to the much needed
integration of existing statistical information systems across nations, sectors
and life span.

 

2 MHADIE Project aims

 

In detail, MHADIE’s aims were:
a) to use the ICF model of
disability to analyze and evaluate existing health and disability data
sources;
b) to demonstrate that the ICF model is adequate for describing and
measuring patterns of disability;
c) to show that ICF is useful and reliable
for data collection and analysis in clinical, rehabilitation and educational
sectors;
d) to prepare policy recommendations and guidelines on health and
disability for European Union.

 

It is well known that European countries define and measure
disability differently and that this makes it impossible to have common policy
guidelines for persons with disabilities. The MHADIE project was developed and
conducted cross-culturally to fulfill the European Commission’s mandate for
MHADIE to provide scientifically appropriate tools to improve European health
and disability data collection and analysis capacity.

 

3 Methodology and key results

 

The MHADIE Project covered three main research areas:
1.
Statistical - designed to improve methodologies to analyze existing health and
disability databases;
2. Clinical - designed to collect data on functioning
and disability for clinical samples (1200 patients overall, representing 13
different diagnoses and 5 European countries);
3. Educational - designed to
apply the ICF model in various educational contexts across Europe and, in light
of the evidence, to develop the policy tool MAP-EP.

 

The ICF and the ICF adaptation for children and youth, the
ICF-CY, (including the derived ICF Checklist and WHO-DAS II) were shown to be
the appropriate basis for a common and multi-linguistic information platform for
a variety of settings, samples and applications. The MHADIE protocol made it
possible to describe the impact of health and disability on people in their
daily lives, in a manner that can be successfully linked to statistical and
clinical data, and which provides more complete and accurate information than
can be provided by diagnosis alone.

 

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. These recommendations can be
downloaded at www.mhadie.it The final version was given to the EU Commission in
October 2008.

 

4 MHADIE’s education recommendations

 

Special needs education has undergone major shifts in
conceptualising disability and in conceptualising measures of support to match
the special educational needs of children. We are now at a point where we can
integrate these perspectives and develop a common framework. Concerning
education, six recommendations were be made by MHADIE researchers: 

 

  1. MHADIE researchers recommend the ICF framework as a useful structure
    for collecting data relevant to developing eligibility criteria for educational
    services for children and youth.

 

Eligibility criteria defined by education systems regulate the
access to additional or specialized resources not readily made available to all
students. Eligibility is established by identifying the gap between present
functioning and potential future functioning – rather than in terms of an
undesired outcome (decrement in functioning or lack of progress) to be expected
if additional services are not provided. Although eligibility decisions are
obviously based on functioning, most countries link eligibility to disease or
impairment, that are one-dimensional categories. As MHADIE research shows it is
clear that this situation results in an insurmountable conceptual gap between
deficit-oriented information describing disability and competency-oriented
information describing desired functioning, operationalised by educational
goals. Additionally, despite the widely known fact that environmental factors,
such as the quality of instruction/education can cause or aggravate functional
problems, such factors are not systematically taken into account by traditional
eligibility criteria, but we have demonstrated that they should be taken into
account.

 

  1. Across the education sector, we recommend that the consistent and
    valid understanding of disability provided by the ICF be used to understand the
    embeddedness of disability categories and the process by which disability
    categories of special needs are created and applied.

 

In the educational systems of most European countries
disability categories may be used as a clinical description of a student. But
they may also merely describe a student's response to an intervention, or simply
be an indication that a specialized resource of educational setting has been
provided to the student.

 

In most countries, disability categories are not clearly
defined or consistently used. They may be used to inform policy decisions, to
organize administrative processes, to regulate access of professionals to jobs,
or merely to justify educational programmes. They may represent very different
correlates of participation problems depending on the context in which they are
applied. This inconsistent use of disability categories eads to circular
thinking: children with learning problems need to attend a program for the
learning isabled, hence, they must have a learning disability. MHADIE research
shows that ICF provides the terminology nd overall conceptual model that makes
it possible to disaggregate disability categories and analyze their specific
applications in a given education system.

 

  1. MHADIE has shown that MAP-EP© (Matrix for Analysis of Problems in
    Educational Planning), developed by MHADIE researchers, is a useful and valid
    protocol for linking clinical, administrative and survey data to components in
    the education sector, and we recommend to use it as a guide to identify the
    information that needs to be collected for educational planning.

 

Given that disability categories tend to be used inconsistently
(sometimes to represent groups of children with similar clinical
characteristics, sometimes groups affected by the same policies, and sometimes
groups in the same educational programs), in order to achieve consistent use, it
is important to be able to analyze and compare underlying problems. For this
purpose, MHADIE researchers developed an information matrix called MAP-EP© for
comparing the use of disability categories and related information at different
levels of the education systems and at different points of the educational
planning process. For example, a special teacher needs different information to
develop an individual educational plan than is required to establish eligibility
for programmes or to monitor the overall outcome of all students at the end of
compulsory education. MAP-EP provides a protocol for analyzing and
contextualizing available information and links the appropriate information for
each application. MAP-EP can be further tested for usefulness and consistent
application across the educational system.
A European Coordination Action for
Policy Support 13

 

  1. MHADIE research highlights the importance of including the 0-6 years
    children subgroups in population surveys for prevention policies. Given this,
    MHADIE researchers recommend that the ICF-CY (ICF Children and Youth version) be
    used to collect these data.

 

MHADIE researchers tested ICF-CY in a population of children,
0-3 years with special needs. ICF-CY proved to be very useful in capturing
issues of participation of children as well as their environment. Some issues
were rehabilitative, other were preventive. Data is often missed in statistical
studies for this age range, but is urgently needed for preventive actions for
the very young. Linking early development data to health and health-related
measures in older adult life will dramatically increase the value of
self-reported measures of these parameters. ICF-CY is the best way to collect
functional information together with health information to create longitudinal
data sets, useful to tailor interventions at the different stages of life.

 

  1. We recommend that new instruments and tools, that more reliably
    capture the child’s participation and complexities of educational participation
    in school, be developed.

 

 

Extent of current participation in education is a predictor for
future participation, not only in subsequent educational levels, but also for
future participation in employment, economic and social life. MHADIE research
shows that participation in education is multifaceted and requires more
attention than it is usually given. There are known critical factors that lead
to restrictions in participation, some quite unrelated to a health condition,
namely personal factors such as socioeconomic background or gender.
Participation in education may be experienced differently because of the child’s
relationship to the teacher, to other students, or the class, or because of
negative attitudes associated with 'special schools' rather than 'regular
schools'. Few of these factors can be successfully identified or measured by the
instruments currently available, as these are often limited to specific groups
of children or to specific aspects of participation, such as the expression of
an interest to participate. Given the availability of ICF-CY that could provide
the biopsychosocial framework new instruments and tools, that adequately account
for the complexities of educational participation, are therefore required.

 

  1. MHADIE researchers recommend that the social impact, resulting from
    outcome evaluation of education policies, be collected along with education’s
    outcome indicators for children with disabilities.

 

European Ministries of Education are adopting competence-based
systems of accountability. From a focus on input indicators, policy makers are
becoming interested in academic and non-academic outcomes. Despite this shift
from input to outcome indicators, many countries lag behind in the application
of outcome indicators for children with disabilities. The social recognition of
the need to equalized rights for persons with disabilities, coupled with the
trend toward life-long learning, educational systems are increasingly required
to show how well they do with their students with disabilities. MHADIE research
shows that appropriate outcome indicators for these students will be developed
only when data on students’ performance, as well as other functional
characteristics will be linked to the additional resources or services they
received. Such information needs to be consistently collected across the levels
of education and compared within and between European countries.

Calendar

Upcoming

There are no upcoming events.

Color coded legend

Institutional partners

COE

ETF

EUA

OECD

Task force fostering and building human capital

RCC