Annex 1. Summary of the literature review on the right to independent living and advocacy

It is perhaps well known that there is a conceptual issue when it comes to approaches, understandings and definitions related to the rights of persons with disabilities due to the predominance of the medical model and welfare-based approaches in the field of disability in countries of the Arab region. Despite the majority of them having ratified the Convention on the Rights of Persons with Disabilities and many having revised their national legislation in the area of disability-related rights and issues, these countries still adopt a welfare approach when handling these rights and issues, the effects of which are reflected in policies, strategies and even legal texts in many cases. These policies and pieces of legislation are often of a purely service-oriented nature and consider health care and physical rehabilitation – which are indeed important – as the main priorities, while paying little or no attention to civil and political rights.

In researching a number of Arab legal texts on disability, we find that most of them do not mention independent living as a fundamental right, and many are dominated by a focus on social protection in a narrow sense, limited to the provision of cash assistance and of free or reduced-cost housing.[1]

Some Arab laws contain provisions that violate the right to independent living, inclusion and social protection, such as the Palestinian Rights of Disabled Persons Act No. 4 of 1999,[2] articles 10 (c) and (d) of which oblige relevant authorities to "provide residential services and encourage the use of sheltered workshops for persons with disabilities", and Tunisian Guiding Principles Act No. 83 of 2005 on the advancement and protection of persons with disabilities,[3] which authorizes the establishment and licensing of residential institutions in article 18 yet contains no provisions on the right to independent living.

The Jordanian Rights of Persons with Disabilities Act No. 20 of 2017[4] is the only law in the region that explicitly provides for, in article 28 (c) and (d), putting an end to institutionalization, a prohibition on the establishment of new residential institutions following the law coming into force, and the obligation to convert existing ones into inclusive day institutions within 10 years, as well as, in article 29, the need to strengthen skills for independent living and support services. To implement these provisions, in 2019, Jordan demonstrated an example of best practice in the region by launching a national strategy for alternatives to institutionalization[5] together with an implementation plan, which was followed by regulations and instructions[6] to transform the system of residential institutions into an inclusive system through alternatives. These alternatives included: returning children in residential institutions to live with their biological families after providing training and support services to families and individuals, designing fostering and kafalah programs so that orphaned persons with disabilities can live with their extended families (relatives), and encouraging the inclusion of persons enrolled in residential institutions who lack family support within fostering programmes. Despite all this, the Jordanian Rights of Persons with Disabilities Act does not include a clear definition of the right to independent living in its broadest sense, which encompasses the right to choose one's home and where and with whom one lives, as well as specific services to support independent living, such as mobility support, social protection programmes and other services.

The United Nations Committee on the Rights of Persons with Disabilities issued general comment No. 5 (2017)[7] on living independently and being included in the community,[8] in relation to Article 19 of the Convention on the Rights of Persons with Disabilities. This comment included a detailed explanation of the article, the concept behind it and its contents and requirements. The Committee then issued a document entitled Guidelines on deinstitutionalization, including in emergencies, which was based on the right to independent living and inclusion in the community.[9] These guidelines included conceptual explanations and clarifications with regard to the practices and procedures States parties can use to put an end to institutionalization and transition to community inclusion and independent living.

The 2019 ESCWA study entitled "Barriers to Implementing Article 19: A Study on the Institutionalization of Persons with Disabilities in Select Arab Countries" is one of the very few studies in the Arab world to address this topic.[10] Although the study contains some statistical and information gaps – for several reasons, including the lack of reliable databases on institutionalization in most Arab countries – it indicates that while practices of institutionalization are deep-rooted in Arab countries, there is a trend of some of these countries shifting towards community inclusion and pursuing the path taken by Jordan when it comes to legislation and practice. However, the main obstacles appear to be attitudinal barriers, especially stigma; families lacking the skills required to care for persons with disabilities; and a lack of clear strategies and implementation plans for alternatives to institutionalization. All these factors make deinstitutionalization in these countries a thorny issue that needs careful and in-depth planning.

When it comes to advocacy on human rights and disability rights in particular, there are guides and training materials available in Arabic, such as the New Tactics guide,[11] which sets out guidelines for advocacy campaigns, as well as examples related to disability rights. In addition to the materials available in Arabic, which generally deal with human rights advocacy campaigns and are either prepared by Arab experts or Arab institutions or are translated from foreign sources, there are guides that focus on a specific right or issue relating to disability. These are issued by various organizations, are translated into Arabic,[12] and vary in depth and consistency with human rights approaches and the Convention on the Rights of Persons with Disabilities. However, there is no such specialized guide on the right to independent living or the replacement of institutionalization with an inclusive system. Hence, there is a clear need to develop a simple, user-friendly guide for organizations of persons with disabilities and human rights organizations generally that outlines the implications of this right and the methods and tactics that can be used to promote it and achieve a radical transformation in this area.