Research

Overview
 
Research can be a crucial tool in making the UN Convention on the Rights of Persons with Disabilities (UN CRPD) a reality. It is vitally important therefore that the European Union, as one of the States Parties to the Convention, fully takes a human rights-based approach in its research funding programmes. The UN CRPD clearly sets out a number of provisions regarding research concerning persons with disabilities. Consequently, the objective of EDF and its members in this regard is to ensure that EU funded projects are fully aligned with the UN CRPD. 
 
Article 4.1 of the CRPD clearly states the obligation to “undertake or promote research and development of universally designed goods, services, equipment and facilities” including “information and communications technologies, mobility aids, devices and assistive technologies, suitable for persons with disabilities, giving priority to technologies at an affordable cost”.
 
Additionally, a Universal Design perspective must always be followed to ensure that accessibility is a prerequisite for all EU funded projects and not only those targeting persons with disabilities. By adopting a Universal Design approach at the core of the research process, the equal rights and participation of persons with disabilities will also be realised, for example, through inclusion of researchers with disabilities. Similarly, when including researchers with disabilities it is crucial that the EU funds for projects also cover the reasonable accommodation of researchers and persons with disabilities (e.g. personal assistant, specific assistive technology or different travel arrangements). 
 
Beyond this, it is equally important that the Commission, when deciding the research work programmes, expands further funds for research projects that are relevant to the everyday lives of persons with disabilities and their representative organisations. Article 31 of the UN CRPD sets out that states should investigate what areas are important for persons with disabilities, undertaking research and data collection that will aid them in the implementation of the Convention. Thus, areas such as equal participation in all aspects of life, active citizenship or community-based services for persons with disabilities must be high on the EU research agenda.  
Alongside this, and in line with Article 32 of the UN CRPD, should be the opportunity and funding for organisations of persons with disabilities and other civil society organisations, to participate directly in research and benefit from it
 
Horizon 2020
 
The current EU Research and Innovation Framework, Horizon 2020 (2014-2020), has given funding to a number of research projects that are within the field of disability. Although an increasing number of them focus on areas such as equality, accessibility and non-discrimination, which is moving EU research in the right direction, there are still a great number of EU funded projects which have been conducted through a medical, therapeutic and rehabilitation approach. 
 
In 2015, the UN Committee on the Rights of Persons with Disabilities, a body of independent experts which monitors implementation of the UN CRPD by the States Parties, released their Concluding observations to the EU. Amongst several other important recommendations, the UN CRPD Committee recommended mainstreaming of the disability perspective in all EU programmes, strategies and policies. Further, funding for data collection and research, particularly with regards to women and girls with disabilities, should be extended. The Committee also calls the EU to increase efforts to foster research, data collection and exchange of good practices on supported decision-making, in consultation with representative organizations of persons with disabilities. Lastly, the Committee also noted with great concern that research funded by the EU that was not accompanied by ethics guidelines to ensure that all persons with disabilities were enabled to give their informed consent. The Committee consequently suggested that the EU must review its ethics guidelines regarding research and set good practice examples by developing consent forms in accessible and easy-to-read formats and preventing substituted decision-making in this area.
 
The way forward
 
Based on the spirit and obligations of the CRPD, the UN CRPD Committee recommendations and the shortcomings identified in the current Horizon 2020 research programme, EDF along with its members call the EU to adopt the next Research and Innovation Framework Programme, entitled FP9, in line with the following recommendations.
 
- Mainstream a Universal Design perspective: requiring accessibility as a precondition for all EU funded projects;
- In consultation with persons with disabilities and their representative organisations, select research areas that are in line with the UNCRPD and its full realisation, such as ending discrimination, women and girls with disabilities, refugees with disabilities, ensuring full participation and inclusion in all aspects of life, community-based services, supporting decision-making, active participation, accessible mainstream technologies and assistive technologies, etc.;
- Ensure that research does not create new barriers by involving persons with disabilities from the outset;
- Cover disability-related costs and reasonable accommodation for researchers with disabilities and persons with disabilities participating in research projects;
- Fund and facilitate the participation of organisations of persons with disabilities in research;
- Ensure that all documentation is in an accessible format;
- Ensure that the results of relevant research are disseminated to persons with disabilities and their organisations;
- Adopt a set of ethics guidelines about persons with disabilities in research.
 
EDF and its members will actively work with the EU institutions to ensure that 80 million Europeans with disabilities will also benefit from the next generation of EU funded research within FP9. 
 
 
 
 
 
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