1
DREAM ITN
Final Deliverable
Dimitrios Skempes†
Disability Policy Unit, Swiss Paraplegic Research
Supervisor: Professor Jerome Bickenbach
DREAM work package: Policy Tools: Existing Human Rights & Disability Data
Streams in Europe
April, 2015
2
Abstract
This article presents the author’s learning experiences from a research project within
the Disability Rights Expanding Accessible Markets - an innovative training network
for early career professionals in disability research funded by the renowned Marie
Curie Actions program of the European Commission. This network was designed to
prepare the next generation of disability policy entrepreneurs to assume leading
positions in Europe with the aim to accelerate the implementation of a research and
policy agenda for people with disabilities based on universal human rights principles
and particularly the values of the United Nations Convention on the Rights of Persons
with Disabilities. The article first gives an overview of the context and explains the
necessity to undertake research on monitoring disability rights, particularly with
regards to health and rehabilitation, and then introduces a project which was designed
to investigate the development of evaluation indicators in this area. The article then
provides an account of the author’s research and learning activities within the network
and addresses critical aspects of the training process. These insights are relevant to
senior faculty and young scholars alike in the field of disability and rehabilitation and
may help those involved in the design, funding, and implementation of structured,
multi-site doctoral training programs for early stage researchers.
Keywords: disability, human rights, rehabilitation, training network, early stage
researchers, career development, Marie Sklodowska-Curie Actions, Europe
List of Abbreviations:
CRPD
Convention on the Rights of Persons with Disabilities
DREAM
Disability Rights Expanding Accessible Markets
EU
European Union
MSCA
Marie Sklodowska-Curie Actions
3
WHO
World Health Organization
Disability is a global political and development concern.1 People with disabilities
make up the world’s largest minority and are confronted with higher physical and
economic risks, insecurities, and inequalities in the enjoyment of opportunities for
education and health care. Insufficient regional and national responses to those threats
magnifies their experience of vulnerability and limits their capability to manage their
own affairs. In consequence, people who have physical or mental impairments are
undeservedly suffering hardships because of the lower status the society affords them.
This structural vulnerability has immense repercussions as it destabilizes disabled
people’s lives and weakens social cohesion. 2 These injustices have led the
international community to adopt the United Nations Convention on the Rights of
Persons with Disabilities (CRPD) which reaffirms the worth and dignity of every
person with a disability. This instrument provides States with a moral compass and an
effective legal tool to ensure respect and equal enjoyment by all people with
disabilities of their fundamental human rights.
In mitigating the effects of disability, the European Union (EU) plays an important
role as a powerful regional actor who can influence disability policy development and
implementation both at the international and national level. In addition, the EU as a
transnational entity pools resources and expertise which can expedite the pursuit of
the objectives of the CRPD through targeted investments and programs, including
awareness raising campaigns, training, and focused research programs. To reduce the
adverse impacts of disability, the CRPD requires State Parties to make adequate
investments in research and training of professionals, especially in countries where
disabled people experience a high degree of marginalization and exclusion. Such
training programs on disability priority issues need to be tailored to suit particular
geographical and political contexts.
The Disability Rights Expanding Accessible Markets (DREAM), which was
conceptualized as a multi-site research training network,
provided the financial
resources and the intellectual space to professionals who were at the early stages of
1.
2.
United Nations General Assembly. Outcome document of the high-level meeting of the General
Assembly on the realization of the Millennium Development Goals and other internationally agreed
development goals for persons with disabilities: the way forward, a disability-inclusive development
agenda towards 2015 and beyond. A/68/L.1. New York: UN; 2013. United Nations Development Programme. Human Development Report 2014 "Sustaining Human
Progress: Reducing Vulnerabilities and Building Resilience". New York: United Nations Development
Programme; 2014. 4
their career and were placed across several academic institutions in Europe to conduct
high quality and focused research on various aspects of disability policy under the
prestigious Marie Skłodowska-Curie Actions program of the European Commission
(MSCA). The MSCA support the development of innovative training networks that
enhance employability and career development of young researchers. In addition to
generous research funding, fellows have the possibility to gain experience abroad and
in the private sector and to complete their training with competences or disciplines
useful for their careers.3 The core strategic objective of the DREAM was to equip
early stage researchers with professional skills and knowledge to support the
implementation of the CRPD in Europe while developing their career in this area. 14
fellows have been selected to participate in the network who represented various
educational backgrounds including social policy, public health, law, and economics.
The project was funded for the period 2011-2015 and involved 6 network partners
who were responsible for the training curriculum and 7 associate partners who
provided the fellows with opportunities for professional development.
While organizational and scientific aspects of other similar networks have been
previously examined 4and 5 , the investment for setting up and implementing such
programs in terms of the added value of the MSCA fellowship for the researchers
from their own unique perspective has not been explored. Information on the
experiences of young scholars from EU funded research networks is critical for
curriculum developers, educators, program funders, and policy makers to gain a better
understanding of the impact of those programs on scholarship formation of early stage
researchers. This paper provides an account of the author’s experiences as a MSCA
Fellow and represents an attempt to demonstrate the value of collaborative training
networks as a means for enhancing learning and research capacities and transferable
skills of young professionals using the DREAM network as an example. This study
draws on observational and other types of evidence from a diverse range of sources
such as personal records, network announcements, agendas, email correspondence,
3.
4.
5.
European Commission. Marie Skłodowska-Curie actions - Research Fellowship Programme European Commission. [online] Available at: http://ec.europa.eu/research/mariecurieactions/
[Accessed 15 Jan. 2015].
Leonardi, M., et al. Multidisciplinary research and training network on health and disability in Europe:
the MURINET project. Am J Phys Med Rehabil, 2012. 91(13 Suppl 1): p. S1-4. Van de Sande, D., H.L. Ackers, and B. Gill, Impact Assessment of the Marie Curie Fellowships under
the 4th and 5th Framework Programmes of Research and Technological Development of the EU
(1994–2002). European Commission, Brussels, 2005. 276. 5
progress reports, and participant-observations seeking to provide answers to the
following questions:
•
What research and professional activities have been performed in the
course of the DREAM training network?
•
How have these activities influenced the formation of the author’s
identity as a scholar in the field of disability/rehabilitation?
•
What is the perceived benefit of the training network for the author?
The article is organized as follows: The background section gives an overview of the
context and necessity to conduct research at the intersection of disability,
rehabilitation, and human rights -one of the focus areas of the DREAM- followed by
the second section which details the research undertaken by the author and illustrates
the breadth and scope of the training offered by the network and the host institution.
The third and last section provides an account of activities with professional relevance
and explains the benefit for the researcher.
1.
The Topic & Research Questions.
Of the almost 1 billion people with disabilities in the world, 80 million reside in
Europe and 45.4% are estimated to be adults aged 65 and older.6 Population ageing
and the rise of disability prevalence have created an unfavorable demographic reality
with ominous budgetary implications7and8 which along with the economic crisis have
propelled extensive reforms of European welfare systems on the expense of disabled
people’s rights. 9 Due to their increased dependency needs, people living with
disabilities are seen as cost generators rather than potential contributors in Europe’s
economic recovery. Thus, governments are revising their laws limiting disabled
people’s access to social and employment benefits in an effort to reduce spending on
welfare and sustain a positive fiscal balance. In consequence, many people with
6.
7.
8.
9.
Grammenos, S. European comparative data on Europe 2020 & People with Disabilities. 2013 [online]
Brussels: Academic Network of European Disability Experts, p.24. Available at:
http://digitalcommons.ilr.cornell.edu/cgi/viewcontent.cgi?article=1569&context=gladnetcollect Bloom D.E., et al. Macroeconomic implications of population ageing and selected policy responses.
Lancet, 2014. In press European Commission. The 2012 Ageing Report: Economic and budgetary projections for the 27 EU
Member States (2010-2060). Luxemburg: European Union, 2012 Biel Portero, I. Are there rights in a time of crisis? Disability & Society, 2012. 27(4): p. 581-585. 6
physical and mental impairments face restrictions in accessing health services,
including rehabilitation services, and this has profound implications for people with
severe disabilities who have high healthcare needs and may require specialist and
more intensive support.10 Access to health and rehabilitation services is an important
issue because of the consequences of an inadequate provision of rehabilitation11 and
the State’s duty to ensure access to services for those who require such. Rehabilitation
is broadly defined as a set of measures aiming to restore individual functional
capacity and enhance independence and autonomy of persons with disabilities.12 As
such, rehabilitation is considered a significant input for health care systems.
Strengthening the provision of health related rehabilitation is emphasized in several
legal and political instruments at the international level, either as a developmental
goal or as a human rights objective (Figure 1). The CRPD reaffirms the right to health
for all people with disabilities without discrimination and provides the legal ground
for people with disabilities to claim access to rehabilitation appropriate to their
needs.13 Specifically, the equitable provision of rehabilitation is recognized as a State
responsibility under the right to health and healthcare in Article 25 of the CRPD,
which requires signatories to “…take all appropriate measures to ensure access for
persons with disabilities to health services …including health related rehabilitation,”
and also Article 26, which stipulates further that States should “organize, strengthen
and extend comprehensive rehabilitation services and programmes… particularly in
the area of health…”.14(p.19)
Figure 1. Timeline of United Nations instruments with reference to rehabilitation
10. European Association of Service Providers for Persons with Disabilities. The service providers' role as
human rights enablers in times of crisis’. 2012 [online] Brussels: EASPD. pp.39-53. Available at:
http://easpd.eu/sites/default/files/sites/default/files/hr_enablers.pdf 11. Shakespeare, T. Still a Health Issue. Disabil Health J, 2012. 5(3): p. 129-131. 12. Meyer T., et al. Towards a conceptual description of rehabilitation as a health strategy. Journal of
rehabilitation medicine: official journal of the UEMS European Board of Physical and Rehabilitation
Medicine. 2011; 43: 765-9.
13. Skempes D, Stucki G, Bickenbach J. Health-Related Rehabilitation and Human Rights: Analyzing
States' Obligations Under the United Nations Convention on the Rights of Persons with Disabilities.
Archives of physical medicine and rehabilitation 2015;96(1):163-73. 14. United Nations. Convention on the Rights of Persons with Disabilities. New York: United Nations,
2006.
7
Despite the overall legal commitment of States to ensure the availability and access to
rehabilitation, health systems are failing to respond adequately to the constantly
increasing, basic and more complex health and rehabilitation needs of people with
disabilities. The WHO in its landmark World Report on Disability documents
widespread evidence on unmet needs and barriers to access to rehabilitation services
and highlights the lack of adequate and appropriate information and data for
addressing this gap.15 Furthermore, the report recommends that dedicated disability
surveys should be prioritized for gaining comprehensive information and data on
rehabilitation service needs and use. With the increased emphasis on the human rights
aspects of European disability related policies and programs, there is a need to
strengthen existing accountability mechanisms and design science based monitoring
tools, such as indicators, to assess compliance with international law standards and
monitor progress towards human rights objectives and goals in all areas of social
policy including healthcare policy.
From a legal standpoint, the collection of data pertinent to disability is an obligation
of State Parties to the Convention under Article 31 which requires signatories
to“…collect appropriate information, including statistical and research data, to
enable them to formulate and implement policies to give effect to the present
15. World Health Organization and World Bank. World report on disability 2011. Geneva: World Health
Organization, 2011.
8
Convention…”16 (p.23) . This includes data relevant to rehabilitation. More importantly,
the provision of comparable data and statistics in the area of health is a core
competence of the EU.17 As such, the EU is obligated under both international and
European law to collect those data that will assist Member States with their reporting
obligations and will allow comprehensive assessment of the implementation of the
treaty at the national and European level. Data collection is usually generated through
quantitative and qualitative indicators which are integral part of modern national
statistical office database systems. Depending on the purpose of data collection, other
types of measures may be deemed appropriate to capture the phenomena of interest to
those involved in the process of program and policy monitoring and evaluation.
Overviews of the current status of disability rights monitoring and indicators in
Europe have been provided recently by the Academic Network of European Disability
Experts (ANED).18 and 19 More recent efforts of the ANED include the development of
an online platform which contains critical information in major areas of disability
policy in order to facilitate human rights implementation assessment and reporting.20
While it is not the intention of this article to provide a comprehensive review of the
developments in disability rights monitoring in Europe, it is sufficient to state that
further expansion of the evidence based on indicators is necessary to meet the demand
for accountability across the entire spectrum of rights enshrined in the Convention,
including health related rights. A number of institutions have developed indicators for
monitoring health related rights over the last few years, but the conceptual approaches
and methods adopted are variable. For example, the UK Equality and Human Rights
Committee developed a framework for monitoring inequalities and fulfillment of
human rights based on Amartya Sen’s capability approach which includes indicators
16. United Nations. Convention on the Rights of Persons with Disabilities. New York: United Nations,
2006.
17. Greer, S.L., et al. Health law and policy in the European Union. Lancet 2013. 381(9872): p. 1135-44. 18. Priestley M. and Lawson A., “Monitoring the Implementation of the UN Convention on the Rights of
Persons with Disabilities in Europe: Principles for the Identification and Use of Indicators”, Academic
Network of European Disability Experts 2009 [online] available at : http://www.disability-europe.net
19. Priestley M. and Lawson A., “Indicators for Disability Equality in Europe: A preliminary list of
indicator proposal for discussion”. Academic Network of European Disability Experts 2009 [online]
available at : http://www.disability-europe.net
20. Priestley, M. and A. Lawson, Mapping disability policies in Europe: Introducing the Disability Online
Tool of the Commission (DOTCOM). ALTER - European Journal of Disability Research / Revue
Européenne de Recherche sur le Handicap, 2015.http://dx.doi.org/10.1016/j.alter.2014.12.006
9
that measure some basic aspects of the right to health 21 while other scholars have
utilized the normative framework of the right to health as a departure point to assess
the performance of health systems.22
Although the use of statistical and other types of indicators for measuring a State’s
compliance with treaty obligations has been extensively discussed among
intergovernmental organizations, 23 , 24 , 25 academics, 26 , 27 and 28 and non-governmental
actors, particularly in the context of health related rights, disability and rehabilitation
have not received appropriate attention so far. This is because rehabilitation has long
been considered an unimportant secondary service for people who have impairments
which resulted in rehabilitation being overlooked in the political and research agenda
for the right to health. The lack of information, particularly comparable data and
statistics about rehabilitation, hinders stakeholders’ effort to monitor improvements in
service delivery. This includes fairness in access and financing, quality and
responsiveness of rehabilitation services as well as equity in functioning outcomes.
To facilitate the implementation and promote the enforcement of the right to access
rehabilitation, it is imperative that appropriate data are available covering mostly
aspects of rehabilitation care organization, financing, service delivery, and utilization.
Valid indicators reflecting human rights principles and standards are not only
essential tools for effective monitoring of specific human rights treaty provisions at
national and regional level but can be instrumental in guiding disability friendly
21. Burchardt, T. and P. Vizard ."‘Operationalizing’ the Capability Approach as a Basis for Equality and
Human Rights Monitoring in Twenty-­‐first-­‐century Britain." Journal of Human Development and
Capabilities 2011 12(1): 91-119.
22. Backman, G., et al. Health systems and the right to health: an assessment of 194 countries. The Lancet.
372(9655): p. 2047-2085. 23. WHO, Consultation on Indicators for the Right to Health. Draft Meeting Report, 2004. Geneva. WHO
available at : http://www.who.int/hhr/activities/en/indicator%20reportFINALnopartlst.pdf
24. UN, Report on Indicators for Promoting and Monitoring the Implementation of Human Rights
(HRI/MC/2008/3), Geneva. United Nations
25. UN, Report of the United Nations High Commissioner for Human Rights to the Economic and Social
Council, Geneva 4-29 July 2011 (E/2011/90)
26. Green M., “What We Talk about When We Talk about Indicators: Current Approaches to Human
Rights Measurement”, Human Rights Quarterly 2001, Vol. 23, No. 4, pp. 1062-1097
27. Landman T., “Measuring Human rights: principles, practice and policy”. Human Rights Quarterly
2004, Vol. 26, No 4, pp 906-931
28. Vaghri, Z., et al. CRC General Comment 7 Indicators Framework: A Tool for Monitoring the
Implementation of Child Rights in Early Childhood. Journal of Human Rights, 2011. 10(2): p. 178188. 10
policy development in all areas of economic and social life, including health policy
for persons with disabilities and chronic illnesses. 29
The need to monitor the implementation of the CRPD at the European level with
scientifically robust measures creates a unique learning and academic development
opportunity for early stage researchers in this field of inquiry. The following describes
the ongoing research activities and experiences with the DREAM network as an
example of both the effort of the EU to invest in enhancing capacities in this area and
the effort to advance rehabilitation and disability rights in global health research.
Responding to the above mentioned challenges and seeking to fill the knowledge gap
in human rights monitoring as it pertains to rehabilitation for people with disabilities,
a doctoral research proposal was submitted to the Department of Health Sciences and
Health Policy, University of Lucerne in line with the Work Package 3.4 “Developing
tools and indicators for measuring progress” of the DREAM grant proposal. The
proposed research work was also aligned with the overall agenda of the hosting
institution, namely the Disability Policy Group at the Swiss Paraplegic Research, and
was adapted to the personal interests and professional background of the author and
principal investigator. The main objective of the COPAIR project (Commitment,
Policy and Action Indicators in Rehabilitation) was to propose and explore the
feasibility of a set of human rights based indicators, meant to serve the purpose of
monitoring the implementation of the rehabilitation related aspects of the CRPD. The
specific aims that have been or remain to be addressed in this project are to:
a.
Perform a legal analysis of the Convention to ascertain the attributes
and basic elements of the right to access rehabilitation and corresponding
States obligations
b.
Delineate the core elements of rehabilitation services delivered through
established health system mechanisms, and identify evaluation measures by
systematically reviewing, critically discussing, and synthesizing different
service delivery and organization models published in the scientific literature
c.
Achieve consensus among rehabilitation researchers, human rights
experts, policy makers, and people with disabilities for a new conceptual
29. Gruskin, S. and L. Ferguson. Using indicators to determine the contribution of human rights to public
health efforts. Bull World Health Organ, 2009. 87: p. 714-719 11
framework and a set of measures for monitoring rehabilitation related aspects
of the CRPD
d.
Explore the feasibility of the proposed evaluation framework and
indicators set and formulate policy recommendations for the implementation
of the indicators suite.
To address the previous research objectives, we designed a project consisting of four
successive and interconnected studies (Table 1). These studies and the specific
activities undertaken in the frame of the COPAIR illustrate the breadth and scope of
tailored research training offered by the DREAM to the author.
Study 1 - Identifying legal commitments, policies and actions in rehabilitation: This
study is exploratory and interpretative in nature. We have conducted extensive desk
research to present the legal framework for the right to access rehabilitation under the
CRPD in a systematic way.
Table 1. The COPAIR project: Specific aims, research questions and related studies
Studies
No
Specific Aims
Research Questions
1
Determine the range of
What are the obligations of
Legal analysis/Desk
State duties with respect to
governments in relation to health
review
rehabilitation under the
related rehabilitation under the
CRPD
CPRD?
Identify the core
What are the core organizational
Systematic Literature
organizational capabilities
elements of health related
Review
of rehabilitation services
rehabilitations services? What
and relevant evaluation
evaluation measures are
measures
currently available?
Develop through a
What qualitative and quantitative
Concept Mapping
participatory process a set
measures are contextually
Study of indicators for monitoring
relevant and scientifically
the implementation of the
appropriate to measure progress
rehabilitation related
towards the implementation of
2
3
performed/planned
(Mixed methods,
Participatory)
12
aspects of the CRPD
rehabilitation related aspects of
the Convention?
4
Explore the feasibility of
What is the availability of data to
the proposed indicators set
populate the proposed
for rehabilitation
indicators? What is the
representation of the proposed
Feasibility study with
Qualitative content
analysis
indicators in country reports to
the CRPD Committee?
We searched the electronic libraries on the websites of intergovernmental
organizations such as the United Nations, the World Health Organization, and the
World Bank to identify development consensus documents and human rights treaties
referring to rehabilitation and categorized those by year, content, and legal power
(binding vs. non-binding). Following standard rules of human rights law
interpretation, we conceptualized the right to rehabilitation as part of the broader right
to health and highlighted States’ obligations in conjunction with the latter. Human
Rights Law Databases such as the HURIDOCS and the Global Health and Human
Rights Law database, a free online database of law from around the world relating to
health and human rights, have been searched for court cases and other legal material
to support our arguments. Finally, literature gathered from various academic sources
was synthesized and interpreted in light of the accumulated knowledge from the field
of disability studies, global public health, and rehabilitation research to produce a
rights based framework for the evaluation of rehabilitation policies and programs.
Study 2 – Defining the organizational context of multidisciplinary rehabilitation: We
developed a review protocol based on specific mapping criteria and performed a
structured/systematic review of the literature in selected electronic databases such as
PubMed/Medline, CINAHL, and SCOPUS as well as in scientific journals to identify
the core organizational components of multidisciplinary rehabilitation services. High
quality grey literature was identified by hand search on relevant websites and by
searching the reference lists of identified key publications. In addition, experts have
been contacted to suggest publications that might have been missed by the applied
13
filters or have not been published. Two reviewers have independently extracted data
from the studies selected for the review using a standardized form. Data for the
analysis include the type of study, setting, study population, organizational context,
and key findings. The key findings have been synthesized in a narrative fashion to
produce meaningful and generalizable conclusions.
Study 3 – Developing a suite of rights based indicators for rehabilitation: The
methodology of concept mapping for planning and evaluation has been adopted for
the development of indicators. Concept mapping is a novel participatory approach
that guides action plan development, strategic planning, implementation, evaluation,
and other activities in which group input is valued. The results are visualized and
allow participants to view a specific topic from many perspectives.30 This study will
involve the following research activities:

A focus question or statement will be created to elicit participants’ best
ideas on the topic. (indicators brainstorming based on reading of a background
document summarizing findings from studies 1 and 2);

Participants then organize the indicators into categories to identify
themes and patterns. This will allow us to validate our proposed framework of
study 1;

All participants will also rate the indicators on predefined values of
interest such as importance, feasibility, relevance, user friendliness, or
potential impact;

A sophisticated software organizes and displays data from the
participants, using several multivariate statistical algorithms. The result is a
series of easily readable concept maps which show the relationship between
indicators and the clustering of indicators into themes or issues. Additional
analyses of the ratings data produce Pattern Matches and Go-Zones which
illustrate the values assigned by participants to each rehabilitation indicator;

Further interpretation of the maps and other graphical results and
discussion of the broader themes that the data suggest will allow formulation
of recommendations for action necessary to implement change.
30.
Kane M, Trochim WM. Concept mapping for planning and evaluation. Thousand Oaks, CA: Sage
Publications; 2007
14
Study 4 – Exploring the feasibility of the proposed indicators: We have designed a
feasibility study for testing the indicators set in two areas: (i) data availability and
quality to populate the proposed indicators, and (ii) overall acceptability and uptake.
The data for this study will be drawn from four main sources: WHO Health for All
Database, OECD Health Database, Eurostat sources (European Community Health
Indicators /ECHI and others), and the State Parties’ reports to the CRPD Committee.
Data availability scores will be calculated for each indicator as well as an average
availability score for the full indicators list. The State Parties’ reports will be
scrutinized and reviewed against the indicators list. Indicators coverage scores and a
total coverage score for the set will be calculated. A set of recommendations to policy
makers and practitioners will be formulated to address gaps in indicators availability
and coverage.
2.
My Research Journey.
The DREAM project was created as a laboratory in which fellows undertook research
activities supervised by eminent senior investigators in the field of disability research,
policy, and law. During this process I engaged with experts in my field of study and
explored conceptual frameworks, approaches, and methods to address significant
public health issues of concern to people with disabilities. These areas of concern are
access to rehabilitation, participation in health policy development and service design,
integration and coordination of rehabilitation services with support measures, and
respect for human rights, such as dignity and autonomy in care processes. As a
member of the structured doctoral program in Health Sciences and Health Policy of
the Graduate School of Humanities and Social Sciences at the University of Lucerne,
I have attended advanced courses in human functioning and related classification
systems, the CRPD, and the CRPD’s implications for health care policy and
rehabilitation. These courses have expanded my knowledge on the evolution of the
concept of disability and allowed a better understanding of both the bio-psychosocial
model of disability, as this is articulated in the WHO International Classification of
Functioning, Disability and Health, and the contemporary notion of rehabilitation
deriving from this model. Additionally, I attended workshops and seminars to
improve my skills in research project management, writing grant applications, and
15
publishing in academic journals. Furthermore, I have exceled in preparing and
delivering presentations, thus advancing my public speaking skills. Last but not least,
the DREAM provided me the opportunity to participate in seminars and doctoral
colloquia and the necessary resources to attend and present my research in
international conferences.
Research internships and experiential learning opportunities
According to the training curriculum and a previously agreed personal career
development plan, the DREAM training provided me the opportunity to conduct
research and experience work in the Disability and Rehabilitation Team of the World
Health Organization Headquarters from March 2013 until August 2013. Positive
experiences during doctoral and post-doctoral education and the early establishment
of research activity are important for the successful development of researchers31.This
was certainly a positive and tremendously beneficial period of experiential learning
during which I was exposed to the everyday challenges of the United Nations
specialized agency for health in providing strategic guidance and technical assistance
to Member States to implement policies to improve the health and advance the rights
of people with disabilities worldwide. Due to their relevance with the COPAIR study,
the following tasks and duties were assigned to the author:
a.
Support the development and production of the WHO International
Policy Guidelines on Health related Rehabilitation by examining and
documenting existing approaches for assessing evidence on disability policy in
general and rehabilitation services research in particular;
b.
Preparation of a submission to WHO Guidelines Review Committee
regarding the comprehensive approach to evaluating the evidence included in
the Rehabilitation guidelines;
c.
Provide feedback and technical guidance to contracted research teams
in areas related to specific expertise including the evaluation of rehabilitation
related research proposals;
31. Sinclair, J., D. Cuthbert, and R. Barnacle, The entrepreneurial subjectivity of successful researchers.
Higher Education Research & Development, 2014. 33(5): p. 1007-1019. 16
d.
Become fully integrated into the Disability and Rehabilitation Team
and participate actively in the preparations of the 66th World Health
Assembly; and
e.
Support the drafting and development of the WHO Action Plan 2014-
2021 "Better health for all people with disabilities" by reviewing data
availability and proposing monitoring and evaluation indicators.
The secondment at WHO has allowed me to acquire and practice professional skills in
an authentic setting thus contextualizing my research training in disability and
rehabilitation policy and developing a more coherent identity as a scholar who aims to
produce socially useful research.
Various project activities have fostered interactions between young and senior
researchers with different professional backgrounds and diverse research interests in
the field of disability studies. To facilitate this interaction, the DREAM organized 5
semi-annual conferences creating a community of scholarship for the constructive
exchange of ideas and learning. In addition to academic experts and thought leaders in
the field of disability law and policy, experienced advocates of disability rights from
various organizations as well as policy makers were invited to these conferences,
providing the fellows the opportunity to learn directly from the source how the
processes of change have been initiated, implemented, and monitored in key aspects
of the disability policy agenda at national, regional, and international levels.
Interactions worth mentioning are those the author had with members of the European
Association of Service Providers for People with Disabilities (EASPD), the European
Disability Forum (EDF), and the European Union Agency for Fundamental Rights
(FRA) on political measures at the EU level to reengineer social services and
programs for people with disabilities including rehabilitation and initiatives to
monitor successful implementation of those measures. Furthermore, the network
included intergovernmental organizations from the United Nations system as
associated partners, such as the World Health Organization and the International
Labor Office, which has significantly widened the scope of the professional training
offered to all fellows. In addition, the strong links of the host institution with these
entities were helpful in maintaining communication with key experts even after the
completion of the program, thus creating a space for experiential learning through
networking.
17
3.
Tentative Conclusions & Recommendations.
Overall, DREAM provided a platform for acquiring skills in disability research and
training young professionals in several interdisciplinary fields. However, there were
significant challenges to implementing interdisciplinary research training programs
that DREAM had to overcome. The fact that trainees had diverse backgrounds was
supposed to allow them to explore the broad spectrum of disability policy from
various angles and instill the benefits of collaborative work through structured,
deliberate training and research activities. This type of mobility is called
interdisciplinary mobility, which theoretically seems easy to achieve. However, it
proved extremely difficult in practice because it required fellows to be acquainted
with literature and concepts from different fields in order to build knowledge bridges
to help establish an effective code of scientific communication within the network.
Although participation in scholarship communities and professional networks has
positive effects on both early-career and experienced researchers’ development323334,
empirical evidence shows that students from different disciplines each construct their
doctoral identities in unique ways35. Along this path of identity formation, many
young researchers perceive themselves as being different both in how they understand
research36 and chose to pursue their research objectives37. These findings possibly
explain why disciplinary collaborations are important in promoting scientific and
academic careers38.
Nevertheless, interdisciplinarity is inherent in the nature of social research, and
disability research in particular. DREAM’s success was that it provided trainees with
the essential abilities to respond effectively to the previously mentioned challenges.
Early stage researchers expanded their theoretical horizons and learned strategies for
32. Boyle LE, Ribeiro S. Training European public health professionals-the role of young professional
networks. European journal of public health. 2014;24(5):704-5.
33. Baron P, Corbin L. Thinking like a lawyer/acting like a professional: communities of practice as a
means of challenging orthodox legal education. The Law Teacher. 2012;46(2):100-19.
34. Cox MD. The impact of communities of practice in support of early-career academics. International
Journal for Academic Development. 2011;18(1):18-30. 35. McAlpine L, Lucas L. Different places, different specialisms: similar questions of doctoral identities
under construction. Teaching in Higher Education. 2011;16(6):695-706. 36. Stubb J, Pyhältö K, Lonka K. Conceptions of research: the doctoral student experience in three
domains. Studies in Higher Education. 2012;39(2):251-64.
37. Pifer MJ, Baker VL. "It Could Be Just Because I'm Different": Otherness and Its Outcomes in Doctoral
Education. Journal of Diversity in Higher Education. 2014;7(1):14-30. 38. van Rijnsoever FJ, Hessels LK. Factors associated with disciplinary and interdisciplinary research
collaboration. Research Policy. 2011;40(3):463-72. 18
transcending traditional boundaries of their disciplines to approach research problems
within their real-life contexts. In this respect the author expanded his theoretical and
practical knowledge by presenting his research in network-wide conferences and
constructively exchanging ideas with senior visiting scholars and professional experts
from different disciplines. In addition, the author’s experience from assuming
practicing roles within disability-policy development helped him develop a broader
understanding of the competing roles of various stakeholders in forming policies and
learned to appreciate their influence on research priorities. This experience has
encouraged the author to view social-policy transformations and changes through the
lens of human rights and adopt a wider ethical perspective when examining
programmatic reforms at the macro-policy level. In terms of career impact, temporary
assignments to professional workplaces allowed the author to expand and
contextualize his skill set and assume new roles within the academic sector.
This article has provided an overview of the research and career development
activities performed in the frame of the DREAM project as it pertains to the specific
work package related to rehabilitation and disability indicators. These activities
required an inter- and trans-disciplinary perspective which the DREAM has instilled
to the author. Several components of the training network have contributed to its
success: access to state of the art facilities to conduct research in rehabilitation at the
host institution, generous financial conditions and opportunities for academic
networking, inter-sectoral mobility through structured internship schemes, and
excellent mentorship. Challenges are concerned with the difficulties inherent in
interdisciplinary mobility where researchers need to combine multidisciplinary and
traditional concepts to produce new knowledge.
†
Dimitrios Skempes, MPH is Marie Sklodowska-Curie Fellow at the Swiss
Paraplegic Research (SPF) under the Marie Curie Initial Training Network “DREAMDisability Rights Expanding Accessible Markets” funded by the European
Commission (ITN-2010-256057).
Disclaimer: This report is submitted in fulfillment of the author’s contractual
obligations with the DREAM network. The views expressed in this paper do not
necessarily reflect the views of the Swiss Paraplegic Research, the DREAM training
consortium, or any other
entity the author is affiliated with. Correspondence
19
concerning this paper should be addressed to Dimitrios Skempes, Disability Policy
Group, Swiss Paraplegic Research, Nottwil CH-6207, Switzerland. Email:
(dimitrios.skempes@paraplegie.ch). © All rights reserved