Chapter 2: Monitoring Systems
Systemic disability rights monitoring involves reviewing the effectiveness of legislative frameworks, case law, policies and programs in protecting and supporting the rights of people with disabilities.
While laws, policies and programs may protect human rights, they may also violate human rights. They may do this either through a discriminatory clause or through their silence on an issue important to the rights of people with disabilities. Documenting the way laws, policies and programs violate or protect disability rights and how relevant laws, policies and programs are implemented, enforced and regulated, will suggest ways to work towards legislative and government reform.
In the area of case of law, collecting and studying cases involving disability issues provides evidence of the way courts and other decision-making bodies, including human rights commissions, deal with issues related to disability rights, understand and enforce relevant laws, and use human rights law. Beyond laws and their enforcement, government action has an impact on the daily lives of people with disabilities. Documenting programs, services and practices that violate human rights - either directly or indirectly - provides knowledge for positive change.
In many countries, efforts have been made to document systemic disability rights protections. D.R.P.I. does not want to repeat this work. Instead, where possible, D.R.P.I. is seeking to build on existing data. In many cases, however, previous studies have either been sector-specific or service audits. They have, for example, focused only on particular sectors like education or employment rather than recognizing that it is a web of factors that provides the full picture of the lives of people with disabilities. These studies have also been conducted predominantly in developed rather than developing countries. D.R.P.I. has identified these gaps and is committed to filling them by designing tools that gather comprehensive information from countries in all stages of economic development.
The information collected through systemic disability rights monitoring will contribute to D.R.P.I. reports about the overall disability rights situation in various countries. That is, the systemic monitoring data will be added to the data collected through monitoring individual experiences and media in a given country to form a comprehensive view of that country's disability rights situation in a Country Report. These Reports will ultimately be made widely available through a freely-accessible interactive online database.
Figure 2: Monitoring Systems
D.R.P.I. has developed a number of ways to collect and encourage ongoing collection of systemic disability rights information about countries around the world – that is, information on national legislation, case law and policies and programs that impact the rights of people with disabilities.
Legal Education and Research Project
One approach has been to encourage law students to research issues about human rights and disability in their courses. Through partnerships with law schools around the world, D.R.P.I. is establishing a global network of students working in the area of disability and human rights. This is fostering an ongoing interest in the area of disability rights research.
D.R.P.I. has prepared a bibliography of disability rights resources which is distributed to all participating students, as well as an online message forum (web forum). Students are encouraged to collaborate with their peers from other universities (by posing questions and exchanging resources and ideas) via the web forum. In each of 2004, 2005 and 2006 a videoconference was held in which students from various countries discussed research methodologies and outcomes. In the coming year, D.R.P.I. is planning to use voice and video over internet technology to enable more frequent real-time communication.
Beginning in 2003, with participation by students from two universities, the legal education and research project has now expanded to include students from six universities with another three institutions ready to join in 2007.
Current Participating Institutions:
- La Trobe University (Bundoora, Australia)
- Syracuse University (Syracuse, U.S.A.)
- University of Greenwich (London, England)
- University of Leeds (Leeds, England)
- University of Nairobi (Nairobi, Kenya)
- York University - Osgoode Hall Law School (Toronto, Canada)
New Institutions Joining in 2007:
- Nalsar University of Law (Hyderabad, India)
- Raoul Wallenberg Institute (Lund, Sweden)
- University of Costa Rica (San José, Costa Rica)
To date, students have written papers on a number of different topics. For instance, some compare the disability rights legislative frameworks and case law of different countries, others focus on one country and the legal issues arising in a specific sector, for example education, health care, prisons and employment. Still others examine legislative frameworks as they relate to different types of disability. A sample of the topics that have been addressed by students is found in Appendix A.
With student consent, these papers will soon be posted on the D.R.P.I. website. The information collected also contributes to the systemic disability rights monitoring data included in D.R.P.I.'s Country Reports.
To expand this collaborative effort involving legal education and research, D.R.P.I. is establishing a virtual knowledge network to link law instructors involved in teaching and research on human rights and disability. Communication technology will be used to bring together professors from around the world to discuss new issues in disability rights law and policy and strategies to increase and improve teaching in this area.(Further information about the development of virtual knowledge networks is found in Chapter 6).
A list of faculty and students participating in the legal education and research project is found in Appendix A.
Field Assistants
Systemic data on disability rights is also being collected within each of the countries where a pilot project to monitor individual experiences of people with disabilities is taking place. In each of the pilots, information about disability rights legislative frameworks, case law, policies and programs in the host country is collected by local university students who are called Field Assistants.
The information collected by Field Assistants is added to that collected in other areas of systemic monitoring (case law and legislative frameworks data and statutory human rights data) and combined with data collected in monitoring individual experiences and media portrayals to create a complete report on the country's disability rights situation.
Tool to Collect Legislation, Policy and Program Information
D.R.P.I. has developed a template to help with the collection of legislation, policy and program data specific to disability rights in any particular country. The template is designed to gather data addressing all categories of rights (civil, cultural, economic, political and social). As well as assisting with the collection of data, the template serves as an assessment tool, allowing the identification of gaps in legislation and policy. The template includes cross-references to the relevant provisions of key international human rights treaties, including the new Disability Convention. The template was pre-tested in Portugal15 and later by Field Assistants conducting systemic research during the pilot projects for monitoring individual experiences.
Monitoring the Work of National Human Rights Institutions
D.R.P.I. approached the Asia Pacific Forum of National Human Rights Institutions (A.P.F.)16 to collaborate on the development of a tool to track disability cases decided by national human rights institutions (N.H.R.I.s). At its Annual Meeting in 2005, the A.P.F. agreed to work in partnership with D.R.P.I., to develop and field test this tracking tool. The tool will be pilot tested by A.P.F. member institutions as well as other national human rights institutions in Europe, North America and Africa and then will be made available to national human rights institutions in other countries.
In addition to collecting data, by working with and through national human rights institutions themselves, this initiative will bring to light disability rights issues that have often been hidden and increase the likelihood that disability rights data collection will continue in the future.
In light of the requirement in Article 33 of the new Disability Convention that states parties establish one or more independent mechanisms, as appropriate, to promote, protect and monitor implementation
it is possible that, in many countries, national human rights institutions may be called upon to take an active role in monitoring disability rights. The tool developed by D.R.P.I. and A.P.F. will prove to be very useful in this process.
Strategic Disability Rights Litigation
D.R.P.I. continues to work with the London-based N.G.O., Interights, to find a strategic disability rights legal case in an important area of disability rights law. While most court cases provide justice or relief for one individual, a strategic litigation case aims to have a broader impact and advance the status of international human rights law as a whole. The strategic disability rights legal case will be significant for the lives of people with disabilities living in many countries around the world.
The first phase of the collaboration with Interights involved the development of a strategic approach to advancing the rights of people with disabilities in court and the background preparation of several possible test cases on disability discrimination. Interights supervised preliminary research in this area. This work was conducted by an intern from the Australian disability community. Interights submitted a report outlining a disability litigation strategy, including an overview of existing international disability rights instruments and mechanisms. The report also identifies a number of priority issues for legal action. Finally, Interights outlined the challenges it foresees when pursuing legal action for disability rights.
A second report outlining possible test cases on disability discrimination is expected from Interights in the near future. Upon receipt of this report, one case will be selected and steps will be taken to begin proceedings in the appropriate court or tribunal.
D.R.P.I. has partnered with Interights because of its well-known expertise in advising on and engaging in legal action involving general human rights issues in various jurisdictions around the world. Prior to its partnership with D.R.P.I., Interights had not engaged in any work regarding the rights of people with disabilities in particular. Since having made contact with D.R.P.I., Interights' Equality Programme has taken a strategic interest in disability rights-related work. D.R.P.I. hopes that Interights will continue to work in this area, thus promoting disability rights as a central issue and increasing the possibility that the legal protection and promotion of the rights of people with disabilities will continue to be advanced through the work of similar N.G.O.s in the future.
D.R.P.I. is well on its way to developing tools for the comprehensive collection of information about disability rights legislation, case law, policies and programs around the world. By collaborating with partner organizations that are already engaged in similar work and cultivating interest in disability rights issues on the part of academic researchers, D.R.P.I. seeks to build upon existing expertise and encourage ongoing interest in disability rights monitoring beyond the duration of the project.