DREAM ITN
Final Deliverable
Carly Toepke
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
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1. Introduction to Topic & Research Question.
The original work package was based on understanding indicators and their role in human
rights monitoring. The task was the fill the gaps in the data needed for those human rights
indicators by reviewing best practices at the State and international level through target
setting, progressive realization, and indicator development. With this information, my task
as an ESR was to determine how independent monitoring of human rights could best be
achieved. However, after some research, this work package was deemed overly broad, and it
was suggested to focus on one article of the UN Convention on the Rights of Persons with
Disabilities (“CRPD”) for the project.
Children with disabilities are often excluded from education, even when States have an
inclusive education policy aimed at including those children. This noted disparity created a
legal problem that inspired a research question. My ESR work package was updated along
those lines. The updated work package centered on Article 24 of the CRPD and the State
Party legal obligations for inclusive education, with a particular emphasis on participation in
inclusive education. To complete this task, a comparison of the disability and education
related law and policy at the State and international level was to be done. Included in this
research was locating the best practices of the legal aspects of inclusive education
implementation, both in countries that have ratified the CRPD and not. Then, this research
could lead to the determination of whether the current law augments the obligations under
Article 24 of the CRPD or if changes must be made to align the law with the CRPD. From
this research, I would then make practicable recommendations to the European Union and
State Parties to the CRPD regarding the legal implementation of inclusive education for all
children but with an emphasis on children with disabilities.
This work package aimed to fill the gap between the theory and the practical, legal
implementation of inclusive education. The CRPD Committee has noted the lack of
implementation of inclusive education within the Concluding Observations to State Parties.
The Committee has recommended on multiple occasions that State Parties implement their
inclusive policies and realize inclusive education. The research done within this work package
will hopefully clarify the State Party obligations for inclusive education under the CRPD in
order to make inclusive education a reality – not just a theoretical goal.
2.
My Research Journey.
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At the starting point of my research with DREAM, I had a background in general Human
Rights Law, but no specific disability based knowledge. This made the project both exciting
and daunting. It gave me the opportunity to learn about a whole field of knowledge, but it also
left me overwhelmed with an overabundance of information. The knowledge gaps were
intimidating, but these gaps provided me immense opportunities to learn. Although my lack of
knowledge in the beginning of the project, especially when comparing myself to the other
DREAM ESRs, seemed like an obstacle to me, I accepted it as a challenge and worked harder
to be able to meet the level expected of me.
The challenge was made easier through the trainings DREAM provided. The DREAM
network events, taught by some of the most influential speakers in the disability rights
community, gave me an incredible, incomparable baseline of knowledge in the field. I was not
only reading the works done by the experts, I was able to listen to them lecture, ask them
questions personally, discuss with them over coffee, and develop relationships with them. The
lectures and conversations with the PIs in the DREAM network are what helped to form my
own perspective on what disability. These relationships pushed me to dig deeper and think
bigger about my topic and future as a researcher.
As mentioned, the research and the work package were altered to be more specific and have a
greater impact. The research changed from broad human rights monitoring to the specific
right of inclusive education. This focus worked to strengthen the research and create clearer
goals. In the journey to both find a suitable research topic for the work package and my thesis,
there were many unexpected turns. In redefining my work package, my PI and I explored
many avenues for research, but it was suggested that I choose something I had passion for.
The human rights of children have been a topic close to my heart, and the right to education is
one that is most valuable and needed to access all other human rights. With this in mind, the
work package and research shifted from a statistical, data analysis project to one focused on
the inclusion of children with disabilities in education.
The methodology used in this work package was primarily a mix of doctrinal, legal, and
comparative research. The main methodological tool employed was a cross-jurisdictional
comparative and interpretive assessment of both State and international law in an attempt to
establish best practices of inclusive education. The methodology was chosen due to my
background as a lawyer and its ties to the comparative aspects of the work package. Although
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other qualitative research methods were discussed, such as semi-structured interviews with
education authorities, it was decided that the most effective way to present the research in
both my thesis and the DREAM work package would be through methodology I was most
comfortable with.
The next turn in the journey of this ESR occurred during the secondment placement at the
Mental Disability Advocacy Center (“MDAC”) in Budapest, Hungary. It was there that I was
given a taste of reality outside of the research ivory tower. One focus at MDAC is advocacy. I
was taken out of my comfort zone and asked to research for an advocacy project about
inhuman and degrading treatment in psychiatric facilities. Again, it seemed that I was dropped
into an area that I was completely unfamiliar with. I had to teach myself the groundwork of
the topic before I could even begin the what the project entailed. Although this research did
not have any direct correlation to my research project with DREAM, it did have an effect on
it. I learned about the impact of people’s testimony’s on a project and how seeing the problem
from the person’s perspective who is facing that problem, makes the research more
meaningful to the researcher and the public. What was first an obstacle became an insight.
Another focus at MDAC is strategic litigation for the rights of people with disabilities. Even
as a lawyer, this type of litigation was unknown to me, and I found the use of it interesting
and helpful to progress rights. I worked directly under two lawyers who focused on strategic
litigation and gained understanding of the process and the tactics used. While at MDAC, I was
able to assist with the preparation for an upcoming case on inclusive education. That
experience gave me a look into what an NGO can do to help further the rights of children with
disabilities through the legal process. The secondment at MDAC was meaningful to my
research in that it showed me what research can be used for in reality.
As the research progressed over the past three years, I tried to find a gap in the field to fill.
The gap I found was in the participation aspect of inclusive education. The CRPD requires
that education be inclusive at all levels and that children with disabilities are able to
participate. How were State Parties supposed to ensure that children with disabilities could
participate in an inclusive education? As participation is a subjective concept that is usually
seen outside the law, this area presented another obstacle for me. I had to do research outside
the field of law including, and far from limited to, in psychology, sociology, philosophy, and
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health. This proved difficult in the beginning because the language and lingo used in other
fields was far from what I had grown accustomed to in the legal field.
Now, as the DREAM project is coming to an end, I do feel that my knowledge of disability in
the human rights field has expanded, however, it is not even close to complete. It is such a
wide, trending topic in the international law arena. There are many possibilities for expanding
my current research or branching off into a different part of the disability human rights
agenda. I look forward to the continued research opportunities that the DREAM project
created. Not only was the project a way to further disability human rights research, it created
14 researchers who have strong networks and are capable of instigating change.
3.
My Formation as Policy Entrepreneur
Before starting this project, I had worked for the United States government. I saw the
mountains of bureaucracy needed for change to take place. I was skeptical of the ability of
governments to follow through with change, to say the least. Upon accepting my position in
the DREAM project, I had little hope of my work creating a real impact.
However, through the DREAM network, I saw what effects research could have on the
process of change. Many of the PIs had helped to create policy, sat on treaty body
committees, or wrote reports for NGOs. These works are all pieces that help make change
happen. I have seen firsthand during my experience at MDAC how researching at an NGO
creates change, not only on the cases they take, but on the lives of people with disabilities
around the world. The work of a researcher provides the backbone of any argument. I am
proud to help make those arguments.
The training events provided through the DREAM network have been invaluable. As a ESR
in the DREAM network, I received opportunities to listen to renowned lecturers, participate in
training exercises ranging from knowledge transfer to ICT to legal monitoring, and converse
with the “inner-circle” of disability experts. The training opportunities, although not always
seemingly relevant to the research of each ESR, created platforms to explore other areas that
would normally be outside of each ESR’s scope. The interdisciplinary exchange created deep
discussions that lead to the expansion of research, joint collaborations on works, and even
ESR organized conferences outside the network events.
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Conference opportunities outside of the DREAM network events were also abundant and
positively impacted research. Many other PhD students have to search out funding to attend a
conference, but within the DREAM project, funding did not restrict me from gaining from the
knowledge transfer at conferences. The funding allowance for conference travel allowed me
to present my research to groups of peers and receive feedback to better it. Idea sharing,
critiques, and questions from those outside of the DREAM network created the opportunity
for new perspectives. The conference opportunities also allowed me to expand my network.
Together, the training events DREAM provided and the conferences have allowed me to
create a network within and outside of the disability rights community. This network will
open the door for future research and enable me to successfully implement my knowledge.
This network can also help facilitate my role as a researcher active in policy change. The
trainings also gave me a look at the interdisciplinary field of disability rights. This field,
although rights based, is not only law. It can range from technology to resource management
to health policy to beyond. Although I hope to continue working in the legal field, I have had
interactions with other fields that are influential in disability human rights. The ability to learn
and accept the ideas of others is one that can make a good researcher a great one who can
actively move policy.
Researching at the University of Lucerne or in the Swiss Paraplegic Research center, I saw
how brilliant minds can research and make brilliant findings; however, many times those
findings are not distributed – creating no impact. As highlighted above, the secondment at
MDAC gave an insight into the inner-workings of an NGO but also a view of the practical
side of research. This was influential to my research because it provided real life examples of
how research can change the law. The successful strategic litigation cases and advocacy work
reinvigorated my research because I saw that research can be used in practice. Research, if
used in the correct way, can influence change. It is all a matter of timeliness, contacts, and a
means of distribution.
Seeing research be practically implemented is the goal of every researcher. Research is not
done to be put on a shelf. It is the practical use of research to fulfill goals that drives
researchers to continue with their work. As I move onto the next phases of my research, I
hope to show the entrepreneurship necessary to move my research for change.
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4.
Tentative Outcomes & Recommendations.
Although there is still much research to be done in the area of inclusive education – both legal
and practical – some clear messages from the research experience can be shared. At the EU,
Member States, and local levels, changes at the structural, financial, and attitudinal level need
to be implemented in order for inclusive education to become a reality.
This research project has given insight into how international law and policy create change at
the State level. Although change does not happen directly or immediately, changes in the
ideas about disability and human rights have positively evolved over time. The reason for
evolution is because international standards for human rights have changed, creating a
demand for change at the State level.
The initiation of the CRPD illustrated that disability human rights need special attention from
the States. Pre-CRPD, efforts to bolster the rights of persons with disabilities had been made
at a non-binding level and mildly at the binding level. The CRPD pushed disability human
rights law and policy to the forefront at the international and national level by requiring State
Parties to give support for the realization of equal access and opportunities to human rights for
people with disabilities.
The development of binding international law on the protection of the rights of persons with
disabilities also applies to the protection of the right to education for children with disabilities.
The right to education has evolved from the child having the right to education to each child,
on an equal opportunity with each other, having the right to an inclusive education with all
reasonable accommodations necessary to provide an equal, individualized educational
opportunity in the general education system. Along with the more specific right to education
came more specific obligations for State Parties. State Parties have to ensure inclusive
education at all levels, ensure access to education, including higher education, for students
with disabilities, provide reasonable accommodations, allocate educational professional
trained in inclusive education and in teaching students with disabilities, along with many
other specific obligations.
There are many barriers to change. The major barriers are structural, financial, and attitudinal.
Although intimidating, all of the barriers to change, specifically change in the implementation
of inclusive education, can be overcome by heeding the obligations set out within the CRPD
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text and the recommendations provided in the Concluding Observations to State Parties from
the CRPD Committee.
Structural barriers can include how a State’s legal system allows for and implements change.
If change is a difficult process, the State may avoid any drastic change to its legislation or
system. This could include the many changes that the CRPD obligations require. In regard to
the structural implementation of inclusive education, legislation has to be made that includes a
requirement for inclusive education. Specifically, the CRPD requires that positive steps
should be taken to develop a comprehensive education policy for inclusive education.1 This
policy should include a full, free, compulsory inclusive education – tailored to the individual
needs of all students but with extra support for students with disabilities.2 An individualized,
equal opportunity education begins with reasonable accommodations for learning.3 After the
comprehensive education policy is created, it must be implemented and monitored to
determine its effectiveness.4 To monitor inclusion, State Parties should set targets to increase
the rates of participation and completion of education by students with disabilities.5 Through
indicators and data collection, State Parties are required to monitor the implementation of
inclusive education and evaluate its success.6
Financial barriers inhibit resource distribution for inclusive education. Resources are not only
needed for the implementation of rights, but they are also required by the CRPD. State Parties
have an obligation to progressively realize the right to an inclusive education. This
progression can only occur with the active allocation of financial and human resources.
Specifically, the CRPD requires sufficient budgetary resources to be allocated toward the
1 2 3 4 5 6 Concluding Observations of the Committee on the Rights of Persons with Disabilities, Argentina, U.N.Doc. CRPD/C/ARG/CO/1 (2012), para. 38. Concluding Observations of the Committee on the Rights of Persons with Disabilities, Argentina, U.N.Doc. CRPD/C/ARG/CO/1 (2012), para. 38. Concluding Observations of the Committee on the Rights of Persons with Disabilities, Argentina, U.N.Doc. CRPD/C/ARG/CO/1 (2012), para. 38; Concluding Observations of the Committee on the Rights of Persons with Disabilities, Australia, U.N.Doc. CRPD/C/AUS/CO/1 (2013), paras. 45, 46; Concluding Observations of the Committee on the Rights of Persons with Disabilities, Hungary, U.N.Doc. CRPD/C/HUN/CO/1 (2012), para. 39; Concluding Observations of the Committee on the Rights of Persons with Disabilities, Spain, U.N.Doc. CRPD/C/ESP/CO/1 (2011), para. 44(a). Concluding Observations of the Committee on the Rights of Persons with Disabilities, Australia, U.N.Doc. CRPD/C/AUS/CO/1 (2013), para. 46. Concluding Observations of the Committee on the Rights of Persons with Disabilities, Australia, U.N.Doc. CRPD/C/AUS/CO/1 (2013), para. 46. State Parties are required under CRPD Articles 31-­‐33 to collect data, use indicators, and monitor rights’ implementation. The CRPD Committee specifically reminded a State Party about monitoring the right to an inclusive education. See Concluding Observations of the Committee on the Rights of Persons with Disabilities, Costa Rica, U.N.Doc. CRPD/C/CRI/CO/1 (2014), para. 47. 8
implementation of inclusive education.7 Budgetary allotments are also required for human
resources, which are needed for the direct implementation of inclusive education.8 Human
resources include educational professionals and staff who are trained in inclusive education
and educating children with different learning needs and abilities.9 These professionals and
staff have the direct effect of implementation at the student and community level.
Attitudinal barriers are one of the most difficult obstacles for change to combat. Attitudes are
deeply engrained in society and within people. Change in attitudes comes slowly. With the
example of inclusive education, attitudinal barriers create tension between those who support
it and those who do not. Additionally, when something is not understood or people are not
skilled in ways to implement it, it can be seen as foreign and unwanted. Inclusive education
has had this reputation in some States because the proper systemic and training steps have not
yet been put into place. To overcome attitudinal barriers, one recommendation is to promote
disability-awareness campaigns with a focus on inclusive education. Active advocacy can
promote inclusive education and the rights of students with disabilities.
Success for inclusive education at all levels depends on commitment at all levels. Change for
the implementation of inclusive education needs not only a top-down but also a bottom-up
implementation. The top being the State level and policymakers while the bottom is the
education professional, parents, and student level. The alliance between all parties and
stakeholders are needed. The State level creates inclusive education policy, while the
educational level implement the policy, the parents advocate for inclusion, and students live
it. When all parties work toward same goal of inclusive education, success is attainable.
7 Concluding Observations of the Committee on the Rights of Persons with Disabilities, Argentina, U.N.Doc. CRPD/C/ARG/CO/1 (2012), para. 38; Concluding Observations of the Committee on the Rights of Persons with Disabilities, Hungary, U.N.Doc. CRPD/C/HUN/CO/1 (2012), para. 41; Concluding Observations of the Committee on the Rights of Persons with Disabilities, Peru, U.N.Doc. CRPD/C/PER/CO/1 (2012), para. 37; Concluding Observations of the Committee on the Rights of Persons with Disabilities, Spain, U.N.Doc. CRPD/C/ESP/CO/1 (2011), para. 44(a); Concluding Observations of the Committee on the Rights of Persons with Disabilities, Tunisia, U.N.Doc. CRPD/C/TUN/CO/1 (2011), para. 32(d); Concluding Observations of the Committee on the Rights of Persons with Disabilities, Azerbaijan, U.N.Doc. CRPD/C/AZE/CO/1 (2014), para. 41(b). 8 Concluding Observations of the Committee on the Rights of Persons with Disabilities, Spain, U.N.Doc. CRPD/C/ESP/CO/1 (2011), para. 44(a); Concluding Observations of the Committee on the Rights of Persons with Disabilities, Tunisia, U.N.Doc. CRPD/C/TUN/CO/1 (2011), para. 32(d); Concluding Observations of the Committee on the Rights of Persons with Disabilities, Azerbaijan, U.N.Doc. CRPD/C/AZE/CO/1 (2014), para. 41(b). 9 Concluding Observations of the Committee on the Rights of Persons with Disabilities, Costa Rica, U.N.Doc. CRPD/C/CRI/CO/1 (2014), para. 45. 9
As for the future of disability human rights in international law, I am hopeful. The
development and expansion of human rights has continued, strengthening human rights for all
people as binding. The special protections of groups who are more vulnerable to
marginalization have increased even more rapidly over the recent years. Especially for the
right to inclusive education, the trend internationally is positive. Although after the initial
surge for inclusive education in 1980s-1990s the push for inclusion of all children in
education regressed, the CRPD has given new life to the right of inclusive education. The
right to an inclusive education for all children, but especially for children with disabilities, has
been part of a binding international legal obligation since ratification of the Convention on the
Rights of the Child. In that instrument, inclusive education was not specifically named,
however the CRC Committee continually suggests that education be inclusive and that
children with disabilities have access to an inclusive education. More explicitly though, the
CRPD requires that inclusive education is available on all levels and directly dictates that
State Parties to the CRPD have responsibilities to ensure that people with disabilities are
given access to an inclusive education.
My hopeful “vision of change” in disability human rights protections, and more specifically in
the implementation and protection of inclusive education for all learners, is confident. The
upward, positive trend experienced in the recent years for the progressive of disability human
rights cannot stay at its current momentum. There can be, however, a continual positive
movement in this direction. Human rights are not a fleeting trend. The international human
rights law field is ever expanding, looking to reach equality for all people. For example, soon
after the ratification of the CRPD, news of a UN Convention for Rights of Older Persons was
already in the rumor mill. This illustrates the constant development of human rights and
equality for all. Although regression is possible, in a world searching for equality, equal rights
and opportunities for all seems to be the dominating aim.
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