The implementation of the Convention on the Rights of Persons with Disabilities in European Union and Lithuania : case study

(1)

The Implementation of the Convention on the Rights of Persons

with Disabilities in European Union and Lithuania

Case study

Master Thesis MSc Political Science: European Politics and External Relations MSc Thesis Project: New Forms of Governance: From the EU to the World?

Author: Gaivandas Giedraitis Supervisor: Prof. Zeitlin Jonathan 2nd Reader: Prof. Annette Schrauwen

(2)

2

1. Introduction

The Convention on the Rights of Persons with Disabilities (CRPD), adopted by the United Nations General Assembly in 2006 and ratified by 177 countries since then, is the first legally binding Human Rights treaty of the 21st century and one of the Core International Human Rights Instruments. Furthermore, for the first time in its history, the European Union has become a party to an international Human Rights treaty. The main purpose of the CRPD is “to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity” (United Nations, 2006). The Convention is a unique Human Rights treaty, not only for recognising the rights of the largest minority group globally on a legally binding basis but also for its innovative and transformative features, with regard to international human rights system and the field of disability policy worldwide.

One of the most transformative features of the Convention is its adoption of the social

model of disability. It rejects the medical model and its view that disability is caused by

individuals’ impairments or differences. According to the social model perspective, disability is caused by the barriers created by societal and institutional attitudes. In this view, disability is a socially created problem, which discriminates against people with disabilities and prevents them from exercising Human Rights on an equal basis with others (Hughes, 2010). Subsequently, the Convention seeks to address social and physical limitations imposed by society and institutions in order to ensure the rights of people with disabilities. One of the primary elements of the CRPD is the recognition that reasonable accommodation is a right which is necessary to exercise all other rights. This refers to necessary and appropriate adjustments that do not impose a disproportionate burden. Thus, denial of reasonable accommodation is declared to be a form of discrimination, which must be prohibited. It is recognised that the Convention does not create new rights but extends them in the context of disability which may lead to the creation of incidental rights (Ferri, 2018).

The second innovative aspect is the inclusion of civil society actors in all parts of the process: organisations of persons with disabilities and human rights NGOs, national human rights institutions and the individuals with disabilities themselves. These actors have been involved not only as consultants, but also as stakeholders during the drafting process, and the provisions of the Convention ensure that they maintain an important role in the implementation processes and monitoring mechanisms (de Burca et al, 2013). Moreover, the Convention empowers NGOs with a legal and political basis for demanding change in their

(5)

5

countries, while an individual communications procedure enables individuals to complain about the violations of their rights to the CRPD committee.

The third innovative aspect of the Convention relates to the process of national implementation, monitoring and international revision. In addition to traditional monitoring mechanism (Committee of Experts), the Convention requires parties to establish one or more

focal points at the national level to handle matters of implementation. Moreover, states must

establish or maintain an independent body (usually a national human rights institution) to promote and monitor the implementation of the Convention. With regards to revision, Convention mandates a substantive biennial Conference of the State Parties to discuss and consider matters regarding implementation of the Convention. In contrast to other UN treaties, this conference is held not only for formal reasons or minor matters but is intended to operate as a platform for review and learning of best practices. A series of side events that follow the conference also enable civil society actors and organisations to support each other by sharing experiences and challenges, as well as to interact with decision-makers (de Burca, 2015).

The Convention also resembles multiple features of the Experimentalist Governance, which is a recursive process based on shared perception of a common problem, broad participation of stakeholders, open-ended goal setting, continuous revision on the basis of peer review, and implementation by the lower-level actors with knowledge of the local context. It has the best chance of success when actors can agree over the basic principles but are unable to articulate rules and ensure monitoring. Furthermore, inclusion and participation of civil society actors are essential (de Burca et al, 2013).

The case of the implementation of the Convention in the EU is particularly interesting for several reasons. Firstly, it is the first international Human Rights instrument of which EU is a party and participated as ‘one voice’ throughout the negotiating and signing of the Convention, thus, strengthening its position as an international actor. Secondly, all Member States of the EU also signed the Convention individually. Thus, dual and complementary implementation and monitoring mechanisms can be observed: within the EU and the Member States. This case study presents the case of one Member State, Lithuania, and also observes influence of the EU on the implementation of the Convention at the national level.

The research question is: How has the EU and Lithuania implemented UN Convention on the Rights of Persons with Disabilities?

(6)

6

 How has the CRPD been implemented by the EU and Lithuania?

 What impact did the CRPD have on policies, law and practices of the EU and Lithuania?

 How is the implementation of the CRPD in Lithuania influenced by the EU?

 To what extent did the experimentalist design of the CRPD influence the implementation process?

Research structure. The research begins with the theoretical framework, which incorporates Experimentalist Governance and some aspects of the Critical Disability Theory. It is followed by a chapter on the research design and case selection. The first empirical chapter is integrated with a substantive review of existing literature and focuses on the development of European disability law and policies under the influence of the CRPD. This chapter reviews the incorporation of the main concepts, definitions and features in the legislation, directives and initiatives of the EU, as well as court cases of the ECHR. This chapter is followed by a similar chapter on Lithuania, which covers the development and challenges of the Lithuanian disability law, policies and practices. It also examines the work of the country's independent monitoring institution, analyses the influence of the EU and reviews the most pressing issues of today. Both chapters include a variety of sources, positions and reports, including those of the authorities, non-governmental organisations, and the Committee of the CRPD.

(7)

7

2. Theoretical Framework

Two theories have been chosen as the most relevant to this research. Firstly,

Experimentalist Governance provides a theoretical basis for this research, due to its reasoned

framework for analysing EU processes and compatibility with the innovative features of the Convention. Secondly, Critical Disability Theory is taken into account as a supplementary theory because it contains several aspects that may contribute to the analysis of disability policies and the implementation of the Convention.

2.1 Experimentalist Governance

Transnational governance as well as the adoption and implementation of human rights treaties in particular transcend national boundaries, hierarchical structures and conventional foreign policy making. State (and non-state) actors interact in a post-hierarchical environment of interdependency and interconnectedness, in which the outcomes are often determined by the actors’ ability to cooperate and agree on common ground and goals in spite of differing national contexts and interests. One of the recently developed theories that explores the problems of modern transnational governance is Experimentalist Governance, developed by Charles Sabel, Jonathan Zeitlin and other academics, primarily in the context of European governance. Subsequently, the concept of Global Experimentalist Governance was introduced by de Búrca, Keohane, and Sabel, and applied to the study of regimes of transnational governance which share experimentalist features, such as those established by the United Nations, including the CRPD.

Experimentalist Governance is described as “a recursive process of provisional goal setting and revision based on learning from the comparison of alternative approaches to advancing them in different contexts” (Sabel & Zeitlin 2012, p.169), while Global

Experimentalist Governance is defined as “an institutionalized transnational process of

participatory and multilevel collective problem solving, in which the problems (and the means of addressing them) are framed in an open-ended way, and subjected to periodic revision by various forms of peer review in the light of locally generated knowledge” (de Burca et al, 2014, p.477). Both concepts can be used interchangeably, depending on the context. Essentially, it is a theory of recursive multi-level governance, which suggests a process in which broadly agreed framework goals can be “elaborated and implemented in a multilevel setting, whether domestically, within firms, in federal systems, or, according to

(8)

8

more recent scholarship, transnationally” (de Burca, 2017, p.281) This approach is especially useful in transnational regimes, where there is no single actor holding the authority to establish or enforce common goals, and where it is difficult to adopt uniform rules due to the diversity of local contexts, conditions and practices (de Burca et al, 2013).

At the core of experimentalist regimes is broad participation of stakeholders, formulation of goals in an open-ended way, lower-level or contextually situated adaptation, learning from local contexts, mutual monitoring and continuous revision. An ideal transnational experimentalist regime involves five key steps: (1) initial discussion, consideration and identification of a common problem, defined broadly and shared by all participating members and stakeholders; (2) formulation of a framework understanding, based on open-ended goals; (3) implementation of broadly defined goals by ‘contextually situated’ or ‘lower level’ actors with knowledge of local contexts and discretion to adapt the goals to differing local conditions and inclusion of key local stakeholders; (4) constant flow of feedback from the ‘local contexts’ to the central organ, provided by key local stakeholders, thus enabling monitoring and reporting across a variety of contexts and carrying out mutual peer-review of the outcome; (5) periodic and continuous review of the original goals and revision on the basis of peer-review (de Burca et al, 2014, 2017).

One of the main problems that may arise in experimentalist transnational regimes is the lack of willingness of certain actors to participate in deliberation, obstruction of the process or manipulation of the information they provide for peer review in order to deceive. Therefore, an experimentalist regime may need to rely on (the threat of) invoking sanctions in case of non-cooperation, known as a penalty default. This may take the form of “reducing the parties’ control over their fate through the imposition of an alternative, less attractive regime or outcome that none of them favours” (de Burca et al., 2014, p.478) or, in other words, “a rule that everyone fears more than forms of mutual accommodation that no party might independently choose“ (Sabel & Zeitlin 2012, p.306). In the international human rights regime, states that are unwilling to comply may be motivated through such measures as conditionality of aid on the basis of compliance with human rights standards or consumer-organized boycotts of merchandise imported from such states (de Burca, 2017).

Finally, experimentalist regimes in transnational politics have the best chance of success under four conditions:

(1) Central authorities are unable to articulate rules and ensure effective monitoring. This condition is usually met in diverse environments, where the effects

(9)

9

of regulation cannot be easily predicted, and implementation of the rules may thereby be hindered.

(2) Governments should be able to agree over basic principles. Experimentalist governance cannot be successful if there is substantial disagreement over basic goals and principles.

(3) Inclusion, participation and cooperation of civil society actors in agenda-setting and problem-solving processes.

(4) It should be possible to exert a ‘penalty default’ if key actors are unwilling to cooperate due to their veto rights or protection of established interests (ibid).

Experimentalist Governance and the Convention on the Rights of Persons with Disabilities

The CRPD can be regarded as an experimentalist regime because it exhibits all key characteristics of experimentalist governance. Experimentalist features within the Convention include (1) broad participation of civil society and NGOs in all parts of the process; (2) focus on national monitoring (3) non-definition of disability; (4) an open-ended definition of discrimination; (5) biennial meeting of the parties, who have authority to review implementation and propose revisions (de Burca, 2015).

Firstly, the inclusion and participation of the most affected stakeholders - persons with disabilities and organizations representing them, NGOs, civil society actors, and national human rights institutions - is prominent throughout multiple provisions of the Convention but also in the negotiation and drafting process. For example, Article 3 establishes that „States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations“, while Article 33 states that „Civil society, in particular persons with disabilities and their representative organizations, shall be involved and participate fully in the monitoring process“. Article 4 states that "In the development and implementation of legislation and policies [...] States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations.", and Article 29 establishes the promotion of full participation in the conduct of public affairs, political life, political parties, and NGOs at local, national, regional and global level (ibid). The Convention’s emphasis on inclusion of persons with disabilities in social and political decision-making clearly originates from the social model of disability, which addresses social and physical limitations imposed by the environment instead of focusing on the physical

(10)

10

limits of individuals (medical model) and seeks to ensure that persons with disabilities can exercise fundamental rights.

The adaption of the progressive social model approach became possible as a result of the prominent position taken by NGOs and national human rights institutions throughout the drafting process, along with their influence on the governments. Since the very beginning of the negotiation process, the Ad Hoc Committee made three important decisions: firstly, to invite representatives of NGOs to participate in all public, closed and informal meetings of the Committee, have an official representation in the Working Group, enable them to make statements on the floor after the discussion of each article draft, and allow them to lobby delegations. Secondly, the Committee encouraged States to include persons with disabilities into their formal delegations as well as to consult with them at home. Thirdly, the Ad Hoc Committee encouraged equal representation of NGOs from richest and poorest nations by the aid of UN fund to support participation from underdeveloped countries (de Burca, 2015).

Secondly, with regards to monitoring mechanisms, a standard mechanism, a Committee of Experts was mandated to monitor the compliance at the level of the UN. But what makes the (national) monitoring exceptional is the provision of article 33 (National implementation and monitoring) which establishes that states "shall designate one or more focal points within government for matters relating to the implementation of the present Convention [...] establish within the State Party, a framework, including one or more independent mechanisms, as appropriate, to promote, protect and monitor implementation of the present Convention” and obliges state to involve persons with disabilities and their representative organizations in the monitoring process. These three components, national focal points, monitoring role of national human rights institutions and inclusion of NGOs in the monitoring process was introduced and promoted by the NHRIs and NGOs themselves. Thus, The Convention made national monitoring and implementation a central part of multiple provisions (ibid).

Thirdly, during the negotiations, one of the most controversial issues was whether to include a definition of disability. Most NGOs argued for a firm and clear definition of disability, fearing that states might evade responsibility by excluding certain disabilities in their national legislations. Meanwhile, delegations insisted on not being too detailed. Compromise was achieved by agreeing to include the meaning of disability under the article on ‘Purposes’ instead of the article on definitions. Article 1 states: “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in

(11)

11

society on an equal basis with others”. The solution is clearly in line with social model of disability, and is compatible with the experimentalist governance approach (de Burca, 2015).

Fourthly, Article 2 adopts inclusive and broad definition of discrimination. It states: “’Discrimination on the basis of disability’ means any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. It includes all forms of discrimination, including denial of reasonable accommodation; […] “Reasonable accommodation” means necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms;” Two aspects are worth noticing from an experimentalist point of view: first, the depth of the definition, without using the words ‘direct’ or ‘indirect’. Secondly, the inclusion of the denial of reasonable accommodation. This concept resonates with the features of experimentalist governance due to its adaptability to circumstances (ibid).

Finally, the Convention mandates a substantive biennial meeting of the State Parties. Article 40 states: “The States Parties shall meet regularly in a Conference of States Parties in order to consider any matter with regard to the implementation of the present Convention.” While other human rights instruments also hold regular conferences, it is usually done for formal reasons – to elect members of the monitoring committee and take care of minor matters, without substantial discussions. In the case of CRPD, however, the meeting is intended to operate as a regular review, with the intention to enable states to meet regularly to discuss best practices and all matters of implementation. It is organised around a series of talks with a different theme each year and also includes multiple side events enabling the representative organisations, human rights organisations, civil society and other stakeholders to contribute to the agenda, network with each other as well as with states’ representatives and share best practices and experiences (de Burca, 2015, 2013).

2. 2 Critical Disability Theory

Critical disability theory (CDT) has its origins in the critical theory of the Frankfurt

School in the 1930s but it has been increasingly employed by the scholars in the 21st century. The theory has been associated with the political, social and intellectual reassessment of 'explanatory paradigms' that are used to perceive the experience of persons with disabilities,

(12)

12

and is used to propose potential solutions for political, social and economic changes (Meekosha & Shuttleworth, 2009). According to David L Hosking's (2008) conception of CDT as a theoretical basis for jurisprudence of disability, the core seven elements of the Critical Disability Theory are the following: (1) The social model of disability, (2) multidimensionality, (3) valuing diversity, (4) rights, (5) voices, (6) language, and (7) transformative politics.

CDT adopts a certain version of social model of disability, based on three principles: (1) disability is a social construct, not a consequence of impairment; (2) disability can be described as an inter-dependent relation between the impairment, individual’s response and the societal environment; (3) social disadvantages are caused by societal and institutional attitudes within the environment. However, the CDT version of the social model is described as a 'biopsychosocial model' – synthesis between the medical and social model that balances the factors of impairment, individual’s response to the impairment and the barriers imposed by the social environment. In this way, it aims to emphasize the duality of disability: in some cases, prevention and treatment is an appropriate way to deal with the impairment aspects of disability, but when social marginalization occurs in spite of medical responses, policy responses are needed to adjust the social environment (ibid).

Multidimensionality builds upon the concept of (hybrid) intersectionality, which refers to

“intersection of an axis of privilege with an axis of subordination“ (Hosking 2008, p.9). For example, a lesbian woman is more disadvantaged than a gay man: while both are disadvantaged by their sexual orientation, a woman is burdened on two axis, while a man is burdened on one. When it comes to disability, in some cases, people are not influenced by disability until a certain age or event; thus, a young heterosexual man might suddenly experience a disadvantage of disability, but may still be in a privileged position in comparison with a person who was disabled from birth or has more subordination axis than him. Therefore, multidimensionality describes multiple interconnected memberships that people may have or acquire throughout their lives, and suggests that every group consists of multi-dimensional individuals (Hosking, 2008).

Valuing diversity addresses the fundamental value of political and legal equality in

liberalism. The response of liberalism to differences with regards to race, gender, sexual orientation and ethnicity has been to claim those differences as no longer relevant. In this way, diversity as such is suppressed. Furthermore, in those cases, ensuring the equality did not require the readjustment of basic structures of societies. In case of persons with disabilities, this strategy does not work, because their differences cannot be deemed irrelevant

(13)

13

as this might result in marginalization and rejection. Instead, disability and its differences need to be recognised and welcomed in order to eliminate barriers that prevent full participation and equal rights (ibid).

Rights. CDT welcomes legal rights as an important tool to promote full integration and

advance equality claims of persons with disabilities, while also valuing the diversity that they bring to communities. While Critical Disability Theory does not oppose liberal rights, it draws the attention to how it has not properly and adequately addressed the needs of persons with disabilities due to the fact it does not take into account the diversity within the disabled community in the liberal conception of equality (ibid).

Voices. The opinions of people with disabilities have been traditionally marginalized. If

an able-bodied person believes that disability is suffering, inability and lack, then the voice and opinion of persons with disabilities can be perceived as either his/her healthy or unhealthy relation to the disability he/she has. Thus, if they express a perspective that an able-bodied person does not accept, the voice of person with disability can be dismissed as an unhealthy response to the impairment. CDT aims to prioritize the voices and perspective of persons with disabilities. It is a necessary condition in order for able bodied people to realise that disability does not have to prevent people with disabilities from having a desired life (Hosking, 2008).

Language addresses how the use of language and words influence the disability concept

and the status of persons with disabilities. It includes the labels attributed to the people with disabilities as well as words and images that are used in the portrayal of disability. First, any label for something that society perceives in negative light, provides a negative association. To prevent it, interest groups mainstream a new label, and with each new label there is a reduction of negative stereotype association. Terms such as ‘disabled people’, ‘the disabled community’, ‘people with disabilities’ have been used by the community as preferred terms with a consensus for the word ‘disability’ since the 80s. Second, historically and even in modern times, images and words used to portray disability in the media and culture include stereotyping people with disabilities as deficient, valueless or dangerous people. This is as a result of the attitudes of the medical model, which focuses on impairment as the main cause of problems. Critical Disability Theory investigates how the negative attitudes are revealed, resulting in the perception of people with disabilities as powerless and vulnerable (ibid).

Transformative politics. While there has been progress and democratisation with regards

(14)

14

characterised by inflexibility and paternalism. Moreover, democratisation is often used by the governments to disguise cost-cutting, resulting in unequal impact for persons with disabilities. Critical Disability Theory proposes theoretical basis for addressing disability with different policy responses, based on the policies of equality, inclusion and autonomy. The goal is substantive (rather than formal) equality and empowerment. It is about the value and power (Hosking, 2008). Furthermore, the necessary features of transformative politics in the field of disability should include “ensuring disability policy remains visible, adopting a social model of disability, basing policy on the right to equality and applying a conception of equality that accommodates diversity, and seeking out the participation of disabled people in the development and implementation of disability policy.” (Hosking 2013, p. 97).

Some elements of the Critical Disability Theory are integrated in the Convention and reflected in Experimentalist Governance although from a different perspective. However,

CDT also provides interesting aspects that have not been previously addressed. In particular,

two aspects are interesting to take into account for this thesis: (1) multidimensionality

(intersectionality), which is also briefly mentioned in the Convention; (2) diversity within the

conception of equality. This research could benefit from taking these two elements into consideration when analysing and discussing EU and Lithuania’s disability policies to observe how it relates (if at all) and in what ways.

(15)

15

3. Methodology and Case Selection

This research is a qualitative case study of the implementation of the Convention on the Rights of Persons with Disabilities in the European Union and Lithuania. The goal is to determine Convention’s influence on the creation and modification of the disability-related, anti-discriminatory laws, policies and practices at the EU and national levels of one of its Member States – Lithuania. It also seeks to examine the impact of the innovative and experimentalist Convention’s design has had for the process of implementation. It focuses on three core aspects: (1) transformative social model of disability; (2) the role and impact of civil society; (3) monitoring, feedback and revision. Moreover, it seeks to explain the influence of the EU on the implementation of the Convention at the national level.

Lithuania has been chosen for this case study for several reasons. First, there is very little existing research about the implementation of the CRPD in individual EU Member States. Secondly, Lithuania exhibits some distinctive features: it is a relatively new, post-communist state which joined the EU in 2004. While the country has experienced major economic, social and political developments since then, there are still significant differences and gaps between older Member States and Lithuania, including aspects such as political culture, inclusiveness, participation of civil society, and trust in political institutions. Therefore, it is particularly worthwhile to observe the implementation of human rights treaties in a country, which is a member of the EU and is considered fully democratic, although it lacks many progressive features of a western political and social tradition. Consequently, this research might contribute to a better understanding on how the implementation of the Convention in Lithuania (or possibly in the region) is, comparing to that in older Member States.

The research question is: How has the EU and Lithuania implemented UN Convention on the Rights of Persons with Disabilities?

Sub-questions are:

 How has the CRPD been implemented by the EU and Lithuania?

 What impact did the CRPD have on policies, law and practices of the EU and Lithuania?

(16)

16

 How is the implementation of the CRPD in Lithuania influenced by the EU?

 To what extent did the experimentalist design of the CRPD influence the implementation process?

To navigate these questions, this case study will rely on qualitative research methods:  Discourse analysis will be used to examine the relevant primary sources –

legislative acts, primary and secondary law, court cases and interviews – and secondary sources, such as scholarly articles, reports by both state and non-governmental actors and also data provided by international and national organisations. This method is particularly important in order to reveal how these sources incorporate the core definitions, concepts and requirements of the Convention as well as how they reflect the innovative and experimentalist design.

 Process tracing, which is described as a “a procedure designed to identify

processes linking a set of initial conditions to a particular outcome” (Vennesson, 2012) will be used to develop a causal explanation of the implementation processes. It will support the analysis of the related processes at the international (UN), EU and national level in the context of the Convention, and in particular the dynamics of causal relation between them over time.

 Interviews will be used as a supplementary method to inquire missing

information at the national level. While there is sufficient and varied information in form of reports and scholarly analysis on the EU level, there is a lack of analytical research of the process at the national level. Therefore, this thesis will benefit from insights of the interviewees from the institution responsible for national independent monitoring institution (The Office of Equal Opportunities Ombudsperson) and an active representative of a national non-governmental organisation of persons with disabilities. This also provides an opportunity to incorporate the views and opinion from the perspective of persons with disabilities.

To conduct the research in a reliable manner and to capture relevant data from all three levels (UN, EU and national), triangulation of sources will be used. The sources will include documents (and/or their scholarly review where applicable) of the national government, EU institutions and the CRPD committee; (shadow) reports of NGOs, and the inputs of national monitoring mechanisms.

(17)

17

4. Development of European disability law and policies under the

influence of the CRPD

This chapter seeks to review and analyse the main developments of the European disability law and policies to explain the influence of the Convention at the European and national levels. It begins with a substantive review of existing literature, exploring the incorporation and interpretation of the main concepts and obligations of the Convention in the law and court cases of the EU. It is followed by a section on disability mainstreaming in the national reports in the framework of Open Method of Coordination. Then the European Disability Strategy for 2010-2020 is discussed as a policy instrument, followed by the recent developments: the European Accessibility Act and Council of Europe Disability Strategy 2017-2023.

4.1 EU disability law and the core features of the Convention

Louisa Lourenço, Pekka Pohjankoski and Lisa Waddington (2019) provide a good overview of the development of disability law and policy in the EU, and explain how the CRPD has been influencing European measures. Furthermore, they provide relevant cases of the Court of Justice of the European Union (CJEU) that demonstrate the interpretations of the Convention in the European context.

To begin with, the most important legislative measures by the EU in the area of disability include the Framework Equality Directive (FED), sectoral legislation on accessibility and the conclusion of the CRPD. The FED, adopted in 2000, focuses on equal treatment in employment and occupation, prohibiting discrimination on a number of grounds, including disability but also religion or belief, age and sexual orientation. Furthermore, EU legislature is required to combat discrimination on disability in EU‘s activities and policies in all fields, as required by the Treaty on the Functioning of the European Union (Article 10). EU institutions are also obliged to follow the Charter of the Fundamental Rights of the EU, which includes articles on the non-discrimination and integration of persons with disabilities. Thus, mainstreaming of the protection of persons with disabilities applies to various fields, such as internal market, transport, immigration and asylum, judicial cooperation, amongst

(18)

18

others. Sectoral legislation (enacted through ordinary legislative procedure) primarily focuses on a variety of forms of accessibility, aiming to ensure that persons with disabilities may exercise their rights under the EU law, in areas such as freedom of movement, economic participation and voting. Very recently adopted European Accessibility Act aims to improve the functioning of the internal market for accessible products and services by harmonising accessibility requirements as divergent legislation in Member States creates barriers to trade (Lourenco & Pohjankoski 2019).

The CRPD is a significant source of EU legislation on disability: it is part of the EU legal order, and EU law must be consistent with the Union’s commitments as a party to the Convention. Court of Justice of the European Union (CJEU) is bound to take the CRPD into account when interpreting secondary law. All of the EU Member States have also ratified the Convention in their own right; hence their legislative measures and judicial interpretations must consider the CRPD and honour their commitments both at the EU and the national level. Furthermore, as the promotion and protection of human rights is an important part of the EU external and enlargement policies, the CRPD has a role in the EU’s interactions on the international and regional scene. For example, the CRPD is taken into account in the negotiations with the candidate countries for accession, in the context of evaluation of fundamental rights protection (ibid).

Some of the most important challenges in the interpretation of disability law include the definition of disability (who can be considered as a person with disability?), and the duty of Reasonable Accommodation (what is reasonable?)

4.1.1 Definition of Disability

In the period pre-dating the CRPD, the definition of disability was established by CJEU in a EU labour case Chacón Navas v Eurest Colectividades SA (2006) in response to a request by a Spanish labour court to explain whether FED provides protection against dismissal on the grounds of sickness (claimant was dismissed by her employer after 8 months of absence due to sickness). Firstly, the CJEU noted that the Directive provides neither a precise definition nor guidance on defining disability. Secondly, the CJEU decided that the concept of disability must be understood as a “limitation which results in particular from physical, mental or psychological impairments and which hinders the participation of the person concerned in professional life” (Lourenco & Pohjankoski 2019, p.327). Thirdly, the CJEU emphasised that the concepts of disability and sickness should not be perceived as identical. Thus, protection against dismissal does not become available “as soon as they develop any

(19)

19

type of sickness” (ibid). The CJEU was subject to strong criticism for adopting this definition, because it approached disability from the ‘medical model’ perspective, deriving the disability from the physical impairment itself, instead of employing the ‘social model’ which perceives disability a result of barriers and structures in the society faced by persons with disabilities. However, the CJEU’s perspective towards defining disability changed upon the adoption of the CRPD. In a similar case, Ring and Others (2013) which reached CJEU a few years after the ratification of the Convention, claimants complained about being dismissed from their jobs after a period of sick leave. The CJEU noted that as CRPD is now a part of the EU legal order, and the field of employment is covered by the Convention, the FED has to be interpreted with regard to its provisions. Thus it was decided that concept of disability should be interpreted as a “limitation which results in particular from physical, mental or psychological impairments which in interaction with various barriers may hinder the full and effective participation of the person concerned in professional life on an equal basis with other workers” (ibid).

This definition since been used in relation to the FED and the EU Charter of Fundamental Rights. However, it does not necessarily apply to all regulatory contexts. For example, the CJEU has not taken an identical position with regards to the field of EU’s Customs Nomenclature, where the concept of disability only covers “persons affected by non-marginal limit on their ability to walk, the duration of that limitation and the existence of other limitations relating to the capacities of those persons being irrelevant” (Lourenco & Pohjankoski 2019, p.328). In the field of transportation, disability is equated with ‘persons with reduced mobility’. The proposal of the EC for the European Accessibility Act employs two different definitions: (1) ‘Persons with functional limitations’ which includes “all persons who have any physical, mental, intellectual or sensory impairment, age related impairment, or other human body performance issues, permanent or temporary, which in interaction with various barriers result in their reduced access to products and services”; (2) ‘Persons with disabilities’ which covers “long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others” (Lourenco & Pohjankoski 2019, p.329). EU Member States may also retain different definitions, depending on the context. Thus, it is not certain whether the definition adopted by the CJEU in the area of anti-discrimination in employment, which is derived from the Convention, could be used as a broader frame of reference. While having different definitions for different regulatory area is not necessarily a problem, it would

(20)

20

be reasonable for EU legislature to provide reasoning when derogating from the Convention’s guidance on the concept (Lourenco & Pohjankoski, 2019).

4.1.2 Reasonable Accommodation

Denial of reasonable accommodation is recognised as a prohibited form of discrimination in the CRPD. The obligation of reasonable accommodation is also specified in the FED. Furthermore, a general duty of reasonable accommodation is reflected in the Convention, and it has to be taken into account when interpreting EU laws. The issues related to it may arise in a variety of EU regulatory contexts besides employment. The FED specifies that accommodation measures should be ‘effective and practical’, emphasising functionality over formal compliance They include “adapting premises and equipment, patterns of working time, the distribution of tasks or the provision of training or integration resources” (Lourenco & Pohjankoski 2019, p.335). An example of adapting premises and equipment may be an installation of particular equipment or remodelling of working area. The CJEU has clarified that patterns of working time refer to the speed or rhythm of work, meaning that adjustment in scheduling regular breaks might be needed. Reduction in the working hours may also be an appropriate measure of reasonable accommodation. According to FED, accommodation measures may be considered unreasonable when they would result in disproportionate burden to the employer. Assessment of whether the burden is disproportionate includes such factors as the financial resources or the size of an employer, but the burden may not be considered inappropriate if it is remedied by the national disability policies, for example, if financial aid is provided to hire and accommodate persons with disabilities. Overall, the extent of appropriate measures as well as the assessment of disproportionate burden cannot be determined in advance and depends on a case-by-case evaluation (Lourenco & Pohjankoski, 2019).

There are very few cases at the CJEU relating to the concept of reasonable accommodation. However, some examples from the practice of the CRPD Committee and the European Court of Human Rights may illustrate the guidelines for assessing the proportionality of burden. Firstly, in the case of Marie-Louise Jungelin v Sweden (2014) the CRPD committee considered the complaint of a job-seeker with visual impairment who was refused employment at the Swedish Insurance Agency. It was decided that the agency’s refusal to employ the person was justified because it would constitute undue burden: the employee would not be able to execute the duties of the position because agency’s IT software could not convert handwritten documents into Braille, while the duties of employee

(21)

21

included the handling of such documents. The upgrade of IT software would have required 2% of Agency’s budget, thus the Committee agreed with the decision of the Swedish Court that the accommodation measures would have been disproportionate. An example of an outcome in favour of the complainant is the case of HM v Sweden (2012). In this case, Committee concluded that no justified burden existed when the city’s planning office refused to grant a permission to build a rehabilitative hydrotherapy pool in private property, next to the complainant’s house, who suffered from a hereditary condition for which hydrotherapy was necessary. The Committee decided that the decision to refuse the permit on the grounds of its incompatibility with city’s development plan had not addressed the disability-related needs of the complainant, and that issuing the permission would not have resulted in an undue burden. Finally, a case at European Court of Human Rights has shown that it is impossible to justify a refusal of accommodation measures if the requested measures have not been considered at all. In the case of Cam v Turkey (2006), the Court decided that the refusal of music school to consider accommodation measures for a person with visual disability to attend performance studies was discriminatory. It was explained that the failure to at least consider the possibility of accommodating the complainant due to his disability, was a violation of the rights to anti-discrimination and education (Lourenco & Pohjankoski, 2019).

4.1.3 The CRPD and the New EU Equality Directive

A new anti-discriminatory Equality Directive was proposed in 2008 by the Commission to complement the FED and extend the prohibition of discrimination based on disability to areas beyond employment. The Directive has not yet been adopted but it would be become an important milestone for disability law in Europe. While the EU had not yet concluded the CRPD at the time of the original proposal, it was already influenced by the Convention, and was described as an effective way for the Member States to implement certain parts of the Convention. In particular, the influence of the CRPD is identified in three areas of the most recent version of the proposal: guidance on the concept of disability, reasonable accommodation and accessibility (Waddington, 2019).

Firstly, with regards to the guidance on the concept, the following amendment was included in the proposal for the Directive, citing Article 1 of the Convention: “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others”.

(22)

22

Secondly, the Articles of the Convention that include denial of reasonable

accommodation as a form of discrimination, and define reasonable accommodation as necessary and appropriate modification and adjustments not imposing a disproportionate undue burden to ensure the exercise on an equal basis of all human rights and fundamental freedoms are also reflected in the proposal. It states: “Reasonable accommodation means

necessary and appropriate modification and adjustments not imposing a disproportionate burden, where needed in a particular case, to accommodate the specific needs of a person with a disability so as to allow that person access on an equal basis with others to the specific social protection measure, educational activity, good or service concerned”. The first part of the definition is nearly the same as that of the Convention, but the second part is much narrower: while the Convention stipulates ‘all human rights and fundamental freedoms’, the proposal relates only to access to social protection, educational activity, goods or services (ibid).

Thirdly, accessibility and the elimination of discrimination by removing barriers to accessibility is one of the central principles of the Convention, and in the proposal for the Directive. The original version of the proposal included controversial provisions that were considered too vague and uncertain by the Member States, such as the use of term ‘effective non-discriminatory access’ and lack of clarity on whom the duties would fall. After several amendments, the current, shortened version provides: “Member States shall take necessary and appropriate measures to ensure accessibility for persons with disabilities on an equal basis with others, within the areas set out in Article 3. However, these measures should not impose a disproportionate burden. (…) Accessibility includes general anticipatory measures to ensure the effective implementation of the principle of equal treatment for persons with disabilities (…)”. The proposal also refers explicitly to the CRPD on the principle of ‘universal design’, which provides the measures of improving the accessibility by ensuring that products, services and programmes are designed in a way to be usable by all people, thus meeting the specific needs of peoples with disabilities, while reducing the costs of adaption and promoting their availability. An important aspect of the Proposal is that it seeks to ensure accessibility by anticipation instead of requiring to apply reasonable accommodation for specific individuals (or groups). However, while most Member States agree on the inclusion of a provision addressing accessibility, there is no agreement yet on how such provision should be framed or how it would relate to other EU measures that regulate accessibility standards. The proposal demonstrates the willingness of the Commission and the Member States to implement the anti-discrimination provisions of the Convention through EU law, but

(23)

23

it has not yet resulted in the adoption of the Proposal for the new Equality Directive (Waddington, 2018).

The cases involving the decisions of CJEU, ECHR and the CRPD committee in the context of both, EU-level and national-level disputes, demonstrate that the Convention has had a major influence on the development of the anti-discriminatory disability law and policies in Europe. The strengthening of the social model of disability, the concept of disability as well as the extent of reasonable accommodation and accessibility have been shaped by the CRPD which has become a part of the European legal order. It has had implications not just for the EU but also for the European region in a broader sense, with particular effect for states that are contracting parties to the ECHR and the Council of Europe. In the words of Favalli, "UN Convention has profoundly changed the ECHR’s case law, assuming a prominent role in the Court’s interpretation of disability law. It has become the main interpretative tool setting the standard concerning the protection of the rights of persons with disabilities in the Council of Europe. (…) this is the effect of the (cautious) recognition of the UNCRPD’s core principles as ‘general principles of international law’, that is, regional customary law" (Favalli, 2018, p.530).

Moreover, the FED and any EU secondary law and legislation must be drafted by the legislators and interpreted by the Courts in line with the provisions of the Convention. However, the practical challenges of applying the social model of disability as well as the conceptualization of disability in the EU still remain, particularly in the areas beyond employment and the cases of persons whose impairments may not directly affect their ability to work, but nonetheless effect the ability to participate in the labour market on an equal basis with others due to various barriers.

4.2 Disability Mainstreaming and the Open Method of Coordination

Mark Priestley (2012) contributed to the debate about the extent of convergence or divergence of national disability policies in the EU by looking into the Member States‘ reports within the OMC processes: National Reform Programmes and National Strategic Reports. Specifically, part of his research aims to provide evidence to what extent the disability issues have been mainstreamed into OMC processes during 2008-2010.

Firstly, it is important to understand the concepts of Open Method of Coordination

(OMC) and mainstreaming. The OMC is an instrument of governance which offers 'soft'

policy mechanisms. It is a formal mechanism for voluntary political cooperation between the Member States and the EU in some policy areas where it is possible to reach an agreement on

(24)

24

shared objectives. As opposed to 'hard' measures such as EU legislation, regulations and directives, OMC does not involve transfer of competences to the EU, and relies on mutual agreement for national participation, including voluntary submission to the monitoring of national implementation and policy plans. The core features of OMC are common strategic goals, autonomy of Member States in the implementation of these goals, learning through comparison, reporting, and benchmarking of the progress. OMD processes have been applied in multiple policy fields, such as employment, education, social inclusion, amongst others.

Mainstreaming in the European context has been largely associated with the promotion of

equal opportunities in the field of gender equality. It was done by systematically taking into account the equality dimension in all policies and activities of the EU, including soft law and hard law and the policy processes (as opposed to focusing on policies for specific groups). Mainstreaming is vital in the context of disability as it cuts across multiple policy areas not only within the EU (binding EU regulations and directives) but also national policies (for example, education, social services, housing) (Priestley, 2012).

In 2008, in a round of reporting on Social Protection and Social Inclusion, guidance was given to Member States on Disability Mainstreaming in the New Streamlined European

Social Protection and Social Inclusion Process by the Disability High Level Group. The

discussion paper noted that people with disabilities should be given consideration in all policies and measures, without limiting the actions to those measures that address their needs specifically. It also raised a request to provide a greater emphasis to indicators and data that describe the situation of people with disabilities. Moreover, the DHLG provided a framework of guidance, requesting Member States to include multiple points in their National Strategic Reports and Action Plans with regards to the evaluation of disability mainstreaming. These points are summarized in five core principles:(1) reports should demonstrate social model of disability, non-discrimination and accessibility; (2) reports should highlight the interconnection between the Convention, EU policies and national strategies; (3) reports should show the incorporation of disability issues across relevant fields of policies; (4) reports should demonstrate dialogue with the persons with disabilities; (5) reports should aim to identify related indicators and examples of policies (Priestley 2012, p.17).

On the basis of this framework, Priestley analysed the evidence of disability mainstreaming in (1) Employment OMD (the 2008-2010 National Reform Programmes for growth and jobs) and (2) Social OMD (the 2008-2010 National Strategy Reports on social protection and social inclusion).

(25)

25

With regard to National Reform Programmes (NRPs), the findings have shown very little evidence of systematic mainstreaming of disability as the visibility of people with disability varied significantly: some NRPs have shown increased visibility of disability, while others only mentioned it amongst the list of disadvantaged groups. There was an absence of the core concepts and the social model of disability in the NRPs, and there were very few linkages to UN Convention or European frameworks. There were some examples of the incorporation of disability issues across the range of policies but most only referred to the previously made commitments. In terms of evidencing input by people with disabilities, Denmark presented an example of excellent practice, while some others included minor references to initiatives for involving people with disabilities in the consultation process. Majority of the NRPs did not mention statistics of the situation in the labour market with indicators related to disability (Priestley, 2012).

With regards to National Strategy Reports (NSR), people with disabilities were referred in multiple policy contexts, showing an improvement in NSRs mainstreaming. However, there was little consistency amongst the reports of Member States: Some had over 100 references to disability, while others only a handful. References in the reports of few Member States have also decreased in comparison with previous period. While commitment to mainstreaming was highlighted in some of the NSRs (for example, Sweden, Malta), it was not consistently applied throughout the reports (ibid).

While the analysed reports show a clear lack of coordination amongst different national government ministries and agencies contributing to the reports as well as failure to fulfil of all five guiding principles of DHLG at the time, some positive examples and exceptions are worth mentioning: Slovenian NSRs were the most progressive as they consistently integrated persons with disabilities in all sections of its reports. Slovenia‘s National Disability Action

Plan and Active Employment Policy was initiated in response to claims from civil society and was partially inspired by EU policies. This country was also one of the first to ratify the

CRPD. Some Member States have shown significant progress with regards to strategic consultation with persons with disabilities. Slovakia had established a Council for people with disabilities to monitor the CRPD and provide advice to the government. Ireland and UK initiatives have established bodies of consultations with people with disabilities. Denmark, which had been noted as an example of excellent practice, had issued law requiring local municipalities to establish local disability councils, where half of the members would be delegated by the disability organizations.

(26)

26

What does the review of NRPs and NSRs tell us about Lithuania? (1) Lithuania fell under the category „Limited or no visibility“ of disability mainstreaming in the 2008 NRP. In the NSR, Lithuania had over 100 references to disability or persons with disability, along with Slovenia, Ireland and the UK; (2) The Lithuanian report had acknowledged that the country is dominated by the medical model, whereas social rehabilitation areas are subject to less prominent development; (3) Country’s National Programme for Social Integration of the Disabled 2003-2012 suggested a framework for programme development, however, it was not applied consistently throughout different sections of the NSR. (4) Lithuania was not able to report on the level of poverty/income level of persons with disability due to the fact the database system that would allow such reporting was still being developed. (5) The Lithuanian report had mentioned the intention to ratify the CRPD (which was done in 2010).

The conclusions of Priestley’s analysis noted that despite the guidance of the Commission, disability has not yet been systematically mainstreamed within the frameworks for reporting, and “the existing processes have not codified a framework that allows for systematic reporting amongst the Member States” (Priestley, 2012, p.31). Also, Members have initiated ‘more coherent national disability strategies‘ due to the new European Disability Strategy 2010-2020 and the Convention’s entry into force; however, the examples of good practices were often not visible in the existing OMCs. Thus, this provides an obstacle to the monitoring and comparison between Member States (Priestley, 2012).

4.3 The European Disability Strategy 2010-2020

The European Disability Strategy 2010-2020 was adopted in 2010 by the European Commission, replacing European Disability Action Plan 2004-2010. The CRPD had a major influence on the Strategy, as it was prepared with the special attention to the Convention’s impact on the EU and its Member States. The Strategy references and builds upon the Convention as well as the CFR and EU treaties. It acknowledges that full economic and social participation of persons with disabilities is necessary for the achievement of Europe 2020 programme, promotion of market opportunities, innovation fostering and the advancement of the market. It aims to support the objective of empowering people with disabilities so that they can enjoy equality as citizens and individuals, and benefit from participation in the European economy on an equal basis with others. Furthermore, to bring benefits for the economy and society “without undue burden on industry and administration”. (ibid)

(27)

27

Eight key themes of the strategy are: accessibility, participation, equality, employment, education and training, social protection, health and external Action. In each area, the Strategy notes that the actions of the EU will supplement and support policies of the Member States. The objective of accessibility refers to the ‘accessibility to goods, services including public services and assistive devices for people with disabilities‘. Participation aims to ensure the exercise of fundamental rights and equal participation in society by removing the administrative and societal barriers to participation, including the transition to community-based care as opposed to institutional care.

Equality relates to the objective of eradication of discrimination on the grounds of

disability; thus, deals with the policies and laws against discrimination. The objective of

Employment theme, 'enabling many more people with disabilities to earn their living on the open labour market', relates to the activities that will be undertaken by the European Social

Fund the social OMC. The emphasis of the education and training theme is the mainstreaming of disability in EU programmes and removal of barriers, to promote 'inclusive education and lifelong learning for pupils and students with disabilities'. Social protection is intended to be addressed through social OMC and the European Platform against Poverty. The theme deals with the issues of social exclusion, inequality and poverty. Health theme is addressed in the context of European strategy of Health and Safety at Work programmes.

External Action refers to the promotion of the rights of persons with disabilities within the

areas of EU external action, with relevance for policies and programmes within EU enlargement, neighbourhood and international development. It also relates to the EU role in international organizations. For example, by ensuring that disability policies are properly addressed with regards to CRPD in international contexts and aid programmes (Hosking, 2013; European Commission, 2010).

The implementation of the Strategy relies on ‘soft law’ measures. It is built on the principle of subsidiarity and aims to support national policies and practices in the development of the wider EU disability policy. Thus, the European Commission has assured that the Member States shall maintain the primary role, while the European-level initiatives focus on the added value to the national policies that can be achieved by ‘the adoption of common guidelines toward a shared core of policy objectives' (Hosking, 2013, p.82) The Implementation plan refers to the following instruments: (1) awareness-raising, (2) financial support, (3) statistics and data collection and monitoring, and (4) mechanisms required by the UN Convention. Awareness-raising seeks to ensure that persons with disabilities are informed of their rights of their rights, with particular attention to accessibility to information

(28)

28

and materials, as well as promotion of 'design for all' approach to services, products and environments. Financial support refers to optimizations of EU funding for greater accessibility, non-discrimination and increased visibility of relevant funding opportunities. It states the cost of measures to enable the participation of persons with disabilities in EU programmes should be reimbursed. Furthermore, EU actions should support and complement national measures to combat discrimination and improve accessibility through mainstream funding and increasing accessibility requirements in public procurement. Statistics and data

collection and monitoring seeks to supplement the disability-related statistics to monitor the

situation of persons with disabilities and support the measures of Member States in collecting the statistics and data that informs about the barriers that prevent persons with disabilities from exercising their rights. The fourth instrument refers to addressing the governance framework required by the UN Convention on two levels: Member State and EU level. It states that mechanisms for coordination between the Commission and the EU institutions as well as between the EU and Member States should be established. The implementation of the CRPD and of this Strategy should be regularly discussed with the Member States, their national focal points, the Commission, and organizations representing the persons with disabilities. Furthermore, a monitoring framework with independent mechanism should be established to promote and monitor the implementation of the CRPD (European Commission, 2010).

Hosking (2013) offers a critical assessment of the Strategy in the wider context of EU disability policies. He points out that its transformative potential is constrained by the limits of the EU competences and the principle of subsidiarity. The latter is especially relevant as the field is extensively occupied by the social policies of Member States. These contribute to heavy resistance to the process of transformation of national policies to accommodate the social model approach. On the other hand, there is also a valid concern that the adoption of social model might lead to reduction in financing the social welfare that supports persons with disabilities. Another interesting observation by the author’s assessment is the friction between substantive and formal conceptions of equality: the effectiveness of the equality directives may be restricted by the CJEU’s tendencies towards adopting formal conceptions of equality, particularly “if the Court adopts a restrictive interpretation of the duty to provide reasonable accommodation or places tight bounds on the scope of positive action” (Hosking, 2013 p.96)

The implementation of the Convention on the Rights of Persons with Disabilities in European Union and Lithuania : case study