A/HRC/31/62 36. Representative organizations of persons with disabilities are non-governmental membership-based organizations created with the aim of collectively acting, expressing, promoting, pursuing and/or defending a field of common interest. Led and controlled by persons with disabilities, these organizations should be recognized by the sector that they aim to represent, and may use different strategies to promote their goals, including advocacy, awareness-raising, service delivery and peer support. They can operate as individual organizations, coalitions, or umbrella organizations of persons with disabilities that seek to provide a coordinated voice of the disability movement in its interaction with public authorities. Organizations of parents of children with disabilities are key to facilitating, promoting and securing the autonomy and active participation of their children, with the will and preferences of the child always being respected and their evolving capacities always being taken into account. 37. The Convention on the Rights of Persons with Disabilities has accelerated the process of establishing organizations of self-advocates with intellectual disabilities, of autistic persons and of other individuals who may need extensive support to express their positions. Organizations of parents and relatives of persons requiring support have often played a role in providing such support and one can find organizations that include parents as well as self-advocates. The role of parents in such organizations should increasingly move towards the provision of support, with self-advocates in full control. 38. It is important to distinguish between organizations “of” persons with disabilities, which are led by persons with disabilities, and organizations “for” persons with disabilities, which are usually non-profit organizations that provide services to persons with disabilities and often also advocate on their behalf. This advocacy role needs to be carefully assessed, as it can easily happen that advocates seek to ensure the continuity of services, regardless of whether or not they are human rights-based or the preferred options of persons with disabilities. The failure of States to acknowledge the distinction between organizations “of” and “for” persons with disabilities lies at the heart of historical tensions between the two types of organization, such as those around legitimacy, choice and control, and the allocation of resources. In their pursuit of genuine participation by persons with disabilities in decision-making processes, States need to ensure that the will and preferences of persons with disabilities themselves are given priority. 2. Promoting the creation of organizations of persons with disabilities 39. States must create an enabling environment for the establishment and functioning of representative organizations of persons with disabilities as part of their obligations to uphold the right of freedom of association.26 The Convention on the Rights of Persons with Disabilities requires that States promote the establishment of organizations of persons with disabilities to represent the latter at the international, national, regional and local levels (art. 29). Accordingly, States should adopt a policy framework that facilitates their establishment and sustained functioning,27 which should include a review of the existing legislation, the provision of financial and other support, and the establishment of a formal 26 27 See the International Covenant on Civil and Political Rights (art. 22), the International Covenant on Economic, Social and Cultural Rights (art. 8) and the Declaration on the Right and Responsibility of Individuals, Groups and Organs of Society to Promote and Protect Universally Recognized Human Rights and Fundamental Freedoms. See www.icnl.org/programs/mena/afan/ Docs/Models%20to%20Promote%20Cooperation%20English.pdf. 11