A/HRC/34/69 51. A research coordinator at the Office of the Special Rapporteur on the rights of persons with disabilities, Alberto Vásquez Encalada, highlighted the gap in data collection regarding rights, services, cost of disability and good practices. Quantitative and qualitative empirical research should replace anecdotal evidence to enhance understanding of best practices in different areas such as disability determination and inclusive, community-based interventions. Disability research should follow the human rights-based and participatory approach of the Convention, involve persons with disabilities and their organizations, acknowledge and engage persons with disabilities as rights holders, and respect and protect the will, diversity and preferences of the persons with disabilities involved. 52. A representative of the Disability Research Initiative of Melbourne Law School, University of Melbourne, Yvette Maker, affirmed that research was crucial to informed, validated, transparent and effective policymaking. Ireland used research in drafting a decision-making bill and Australian states were using advocacy and research findings to reassess guardianship laws. To fill gaps in data, indicators of compliance and identification of good practices and to strengthen capacity for research, funders should support disability research proposals and researchers with disabilities. Research agendas should reflect the priorities of organizations of persons with disabilities, the process should be accessible and participatory, and research outputs should be widely accessible and promote rights under the Convention. 53. Representatives of Spain, the Bolivarian Republic of Venezuela, ASEAN Disability Forum, Mongolia National Federation of the Blind, Niger Federation of Persons with Disabilities, People First New Zealand and World of Inclusion made statements on several issues including meaningful inclusion of persons with disabilities and incorporation of research on that group of persons in governmental and commercial policies and practices; the right to inclusive education; challenges faced by women with disabilities; research on justice systems; public policies to meet the needs of persons with disabilities; the need for credible and accurate data on the status of those persons and adequate funding to conduct studies and censuses; and the importance of collaboration and solidarity within and between countries to realize the rights of persons with disabilities. 54. In response, Ms. Davar noted that human rights models should replace outdated medical models as the basis for research. She highlighted gaps, including the need for greater collaboration between academics and civil society in undertaking research. Mr. Vásquez Encalada noted the need for strong frameworks in facilitating participatory research processes and called for stronger links between civil society and research institutions in collecting and using data. Ms. Maker addressed participatory research as a means to avoid misrepresentations in evidence-based policy, as well as the importance of good research in aiding justice systems. She prioritized the need for adequate funding and collaborative approaches to research. I. Realizing the human rights of persons with disabilities 55. A member of the Committee on the Rights of Persons with Disabilities, Theresia Degener, noted that fewer than 30 States had yet to sign the Convention and that some States parties could improve compliance by withdrawing reservations or declarations. Stakeholders should work to understand and promote a human rights model of disability, i.e., that rights could not be gained or taken away based on personal features, and move away from a medical model of disability. Governments and organizations of persons with disabilities should make use of the Committee’s recommendations, including designating national human rights institutions as independent monitoring mechanisms. Organizations of persons with disabilities could translate recommendations into feasible national action plans. She welcomed efforts of national jurisprudence to clarify aspects of the Convention, 14

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