Human Rights and Disability A Manual for National Human Rights Institutions While, ideally, civil society should be consulted by the focal point within government, they can and should be part of the coordination mechanism within government. They must certainly be part of the framework for monitoring set out in article 33(2). Persons with disabilities should also be involved in the work of NHRIs. They may be directly involved; for example, where persons with disabilities are appointed as Commissioners or staff within NHRIs or where they sit on advisory groups or committees. Involvement may also be via representative organisations. Here it is important to draw a distinction between organisations ‘for’ persons with disabilities, such as some charitable organisations and service providers that are led and staffed overwhelmingly by persons who do not have a disability, and organisations ‘of’ persons with disabilities, which are led overwhelmingly by persons with disabilities. It is also important that organisations of persons with disabilities represent the plurality of persons with disabilities including, in particular, the experiences and perspectives of people with psychosocial disabilities, intellectual disabilities, women and children with disabilities, older persons with disabilities and persons with disabilities from minority ethnic or indigenous groups. Representivity – and judgments about representivity – are inherently difficult and will no doubt prove challenging. The Note by the Secretariat for the Convention on the Rights of Persons with Disabilities to the 2014 Conference of States Parties recommends that: The potential to have national human rights institutions serve as independent mechanisms and organizations of persons with disabilities as participating entities of the monitoring framework should be explored. A number of States have taken this approach and examples of their work are provided in Part III of this Manual. 3.6. TOOLS FOR EFFECTIVE POLICY-MAKING: DATA COLLECTION (ARTICLE 31) Article 31 requires States parties to collect appropriate information, including statistical and research data, to enable them to develop and implement policies to give effect to the UN CRPD. In doing so, they must comply with established safeguards regarding confidentiality, privacy and data collection, as well as with ethical principles in the collection and use of statistics. The Convention also emphasises the importance of disaggregating data in order to identify the necessary steps required to implement the Convention. This clearly indicates the need for data that identifies the barriers faced by persons with disabilities in exercising their rights, rather than on the prevalence of disability or specific impairments. The UN CRPD also requires that this data is disseminated and accessible to persons with disabilities. A very recent promising practice involves the Office of the Ombudsman of Samoa and the preparation of its annual Human Rights Report. In 2016, the report will focus on disability.113 It is currently conducting a survey to which the public are invited to contribute. Furthermore, it is collecting narrative stories or case studies of the lived experience of persons with disabilities. This is the first time this has been done in Samoa and the outcomes will be used to inform policy making. 113 52 Reports of the Ombudsman of Samoa are available at www.ombudsman.gov.ws.