Table of contents:
Chapter 5: Conclusion
While some Governments in the Arab region are moving towards mitigating the use of residential institutions through not accrediting or opening new institutions, supporting personal assistance and improving the accessibility of public services, many countries continue to rely on residential institutions to provide care for persons with disabilities. Many barriers remain to the fulfilment of Article 19’s goals of community inclusion and independent living. This study highlights the urgency of addressing institutionalization as a primary concern for Governments seeking to implement the Convention and affirm the rights of persons with disabilities throughout the Arab region.
Interviews revealed poor conditions in residential institutions, including unhygienic and overcrowded environments. In the majority of institutions covered in this study, residents were not free to move between the institution and the local community. Eventual pathways to integration in society were at times unclear or nonexistent. There is therefore an immediate need for States to improve conditions within existing institutions while simultaneously developing deinstitutionalization strategies.
Even in cases where institutions provide high quality services to persons with disabilities, the defining characteristics of institutionalized settings—a rigid routine, exclusion from social life in the community, and a lack of choice regarding whom one lives with or receives care from— stand against the principles of Article 19. If residents are impeded from making substantive decisions about their own lives based on personal preferences, this constitutes a failure to protect their rights to autonomy, liberty, and independence. In accordance with the UN CRPD, institutions should not be improved to provide residents with a larger degree of freedom, but rather be replaced by new systems of care. Through creating strategies that address the creation of alternative, independent living facilities, the improvement of accessibility across society, and the provision of direct support to persons with disabilities and their families and communities, States would aim to progressively realize Article 19 and move toward the end of institutionalization
Planning for the end of the use of residential institutions is necessary not only for the progressive realization of Article 19, but also Article 12 on legal capacity, Article 14 on liberty and security of the person, Article 23 on respect for home and the family. Enabling independent living has positive implications for the participation of persons with disabilities in the workforce, as called for in Article 27, and political systems, as called for in Article 29. Article 19’s implementation is also central to the New Urban Agenda’s goals of accessible cities, as well as the 2030 Agenda and its Sustainable Development Goals, specifically target 10.2 to promote the social, economic and political inclusion of all.
Transitions away from institutionalization and toward socially inclusive modes of care and service provision will be complex and at times difficult, particularly in Arab countries facing poverty, armed conflict, infrastructural challenges and weak social protection floors. Cooperation across ministries and between governmental and non-governmental actors will be necessary throughout this process. While deinstitutionalization is critical to the implementation of Article 19, the closure of institutions must be accompanied by structural changes that increase accessibility across all areas of society.
The following recommendations seek to highlight specific actions countries throughout the region can take to uphold their commitments under Article 19 to support the independence and inclusion of persons with disabilities.
Adopt deinstitutionalization plans with concrete timelines, budgets, and sources of alternative care: CRPD Committee guidance has stressed that all states that have ratified the Convention must commit to ending the practice of institutionalization. However, the realization of this commitment may need to be taken in stages and the timeline of this process can vary. This is particularly relevant to countries in the Arab region, where the immediate and complete closure of all institutions may not be feasible due to war and conflict, poverty, inaccessible infrastructure, and weak or nonexistent social protection systems. But even when facing these challenges, countries must plan for the future transition to community-based care and the end of institutionalization practices. States that have existing inclusive care models in place should consider strengthening these systems and adopt policies that phase out residential institutions, including the commitment not to open any new residential institutions (Oman). States that do not currently possess alternatives to residential institutions may wish to immediately consult with experts to develop strategies for supporting independent living and community-based care and to seek assistance in creating deinstitutionalization plans tailored to country-specific needs and resources. An example of deliberate and time-scaled strategic planning can be found in Jordan’s action plan on deinstitutionalization, which will replace the country’s residential institutions with community care centers over a period of ten years. Alternatives to residential institutions can include subsidized in-home care, assisted living programs, and the provision of individualized support services. At all stages of planning processes, States Parties should actively consult persons with disabilities and their representative organizations.
Contribute to an increased understanding of the extent and scope of institutionalization in the region: Arab Governments are advised to conduct their own in-depth research that probes the use of and conditions in residential institutions in their respective countries, with specific attention paid to the role of institutions in facilitating or impeding independent living. Amassing and publishing disaggregated statistics on currently operational institutions, both public and private, and the number and profiles of persons they accommodate is critical to the monitoring and evaluation process, and a necessary first step in promoting and supporting independent living and formulating deinstitutionalization plans and policies.
Improve monitoring and regulation of existing residential institutions throughout transition processes to community-based care: While states create and implement deinstitutionalization strategies, steps must be taken to ensure persons with disabilities currently living in institutions are protected, supported and listened to and that the institutions themselves are providing high quality care. Governments must actively monitor and regulate all operational institutions, identifying barriers to residents’ autonomy, reducing guardianship, and facilitating improvements in the provision of care and services while keeping larger goals of independent living in mind. Morocco has recently made progress in the area of monitoring through the passage of Law 65-15, which requires all residential institutions to create committees to facilitate the monitoring and inspection process.
Improve the accessibility and inclusivity of existing community-based services and facilities: To fully support the independent lives of persons with disabilities, wide-ranging accessibility improvements must be enacted throughout the Arab region. Ensuring persons with disabilities have equal and unimpeded access to hospitals, schools, transportation systems, workplaces, commercial areas, and leisure spaces will reduce the need for the provision of services through institutions.
Develop individualized support services at the local level: In addition to improving the accessibility of public facilities and services, Arab countries must work to ensure persons with disabilities have access to personalized support in their homes and communities. This can take the form of subsidized personal assistance, community-based rehabilitation programs, housing adaptations, and/or the provision appropriate medical equipment. Community-based support services must be tailored to meet the diverse needs of persons with sensory, psychosocial, physical and intellectual disabilities. Providing training and technical support to the families of persons with disabilities may also be helpful, as interviewed families were often reluctant to remove their relatives from institutions because they did not know how to best assist them. Promisingly, the public official from Palestine described a forthcoming plan to provide medical equipment directly to persons with disabilities to promote independent living, and the public official from Saudi Arabia stated that the Government would soon roll out a programme to train the families of persons with disabilities on providing care within home environments. In all cases, new programmes should be widely publicized, so persons with disabilities can make informed decisions about the assistance they wish to receive.
Redirect state resources away from institutions to directly benefit persons with disabilities and their families: Currently, many Arab countries provide financial support to public and non-profit institutions, and subsidize care in private institutions. Interviewed public officials, directors of institutions and caregivers associated institutionalization primarily with the socio-economic conditions of families of people with disabilities, and to a lesser extent with disability itself. Individuals with disabilities from disadvantaged socioeconomic backgrounds are more likely to end up spending their lives in residential institutions since support services maybe be expensive, difficult to obtain or far from home. If money that is currently directed towards institutions instead goes to persons with disabilities and families themselves, this money could be used to pay for needed care, support services, assistive technologies, adjustments to their home environment, etc. and therefore reduce and even eliminate the need for residential institutions. This study therefore recommends that as part of deinstitutionalization plans, governments shift their financial support away from institutions and toward directly assisting persons with disabilities and their families/caregivers, in addition to improving the provision of necessary facilities and services within communities.
Improve the inclusivity of national education systems: Interviewed persons with disabilities living in institutions frequently cited a lack of educational opportunities as a barrier to community participation. Rather than creating separate educational centers for persons with disabilities, governments should take steps to promote the inclusion of persons with learning disabilities in state-run schools. Lebanon has recently made progress in this area through the roll-out of a joint program with UNICEF intended to increase the enrollment of children with learning disabilities in 30 public schools throughout the country. This will be achieved through deploying special educators to each school, providing training to teachers on curriculum adjustment, and creating five mobile teams consisting of psychologists, psychomotor therapists, and speech therapists that will travel between schools.The British Council supports Iraq in developing an inclusive education strategy.
Support the participation of persons with disabilities in the labour market: Alongside exclusion from educational systems, a lack of employment opportunities was often mentioned as a barrier to independent living. In addition to creating or enforcing quota systems for the employment of persons with disabilities, Governments would be advised to create or support programmes that encourage employers to hire persons with disabilities and support them in the workplace. A shift in the mentality of employers can be assisted by providing them with Disability Equality Trainings, technical assistance and financial support to help them make the necessary adaptations to their facilities. Vocational training programs and schemes that help with transport to work will also facilitate integration into the workforce. Plans like Saudi Arabia’s Tawafuq programme that combine measures to improve workplace inclusivity with vocational training and employment support are particularly effective.
Invest in affordable and accessible transport: While improving accessibility across all sectors is necessary, case studies indicated that improving or creating accessible transportation systems should be a priority in the efforts of Arab States to protect the right to community living and social inclusion. Interviews with families showed that inaccessible transport services, high transportation costs and logistical difficulties forced many parents to place their relatives in institutions full-time, even when non-residential options were available. When support services are not provided at the local level, affordable and accessible transportation is necessary to ensure persons with disabilities can travel to receive care, education and employment outside of their communities while maintaining their residence of choice.
Combat the stigma attached to disability: Negative depictions of individuals with disabilities in public culture, on television, in newspapers, school textbooks, novels and children’s stories and other media outlets feed prejudiced attitudes that reside in the conscious and unconscious minds of the general public. Such representations can enforce the exclusion of persons with disabilities from communities, presenting a significant barrier to deinstitutionalization and independent living. Public education campaigns play an important role in combating stereotypes and reducing stigma surrounding disability. Under Article 8 of the Convention, Governments have an obligation to actively initiate and maintain awareness campaigns to build receptiveness to the rights of persons with disabilities. In doing so, civil society organizations and media groups can help identify discriminatory stereotypes and reinforce more equitable norms that advance the inclusion of persons with disabilities in their communities.
Engage in dialogue on how institutions can support the transition away from segregated residential care: The study found that the majority of public officials were pro-deinstitutionalisation while directors of institutions often maintained that their role was to protect persons with disabilities from society. Further dialogue is needed between government officials and institutions on how institutions can support the transition away from segregated residential care and become establishments that continue to provide specialized services while fostering independent and community living. In many instances, residential institutions are the only entities available to persons with disabilities that have the capacity to provide specialized services, so rather than simply shuttering them, they could be redesigned in a way which replaces institutionalized care with day-service facilities that support the principles outlined in Article 19. These redesigned facilities can also work together with the government, civil society and the media to combat discriminatory stereotypes which result in the exclusion of persons with disabilities from society.
At its core, Article 19 of the Convention on the Rights of Persons with Disabilities stipulates that persons with disabilities, like all others, have the right to choose how to engage in society. They are entitled to actively participate in communities as students, employees, friends, and neighbors, and to enjoy the benefits of leisure spaces, home environments, and family life. Unfortunately, the practice of institutionalisation excludes persons with disabilities from making these choices. Even the most basic acts of personal autonomy, such as deciding what to eat, when to go to sleep, and who to interact with, are difficult in an institutionalized environment.
21 out of 22 Arab States have signed or ratified the Convention, yet there remains a significant gap between these commitments and the reality of the Convention’s implementation in the region. This extends to Article 19, as many Arab States and societies rely on residential institutions to provide care and services to persons with disabilities, despite the resulting deprivation of rights to independent living and community participation. In the region, there is a clear need to advance the implementation of Article 19 through new national strategies for inclusion. The closure of residential institutions will be a necessary component of these future plans, but it alone does not ensure the full integration of persons with disabilities. Despite many regional constraints and various domestic and local challenges, the Governments of Arab States must address inclusion and independent living expansively and holistically, removing social, cultural, physical, economic and legal barriers to ensure persons with disabilities can participate in all aspects of society on a basis equal with others.