Table of contents:
Causes of institutionalization
The study found that institutionalization is often a result of the inability of families to care for relatives with disabilities for reasons that include a lack of local services, inadequate access to transportation, limited financial resources, and difficulties providing appropriate care in the home environment. Residential institutions in the region accommodate a significant number of orphaned and abandoned persons with disabilities, as well as many children of divorced parents, children from families that have more than one family member with disabilities and children with multiple disabilities. For some interviewed families, social stigma and the fear of harassment or abuse also played a role in the decision to place their relatives with disabilities in residential institutions.
Types of institutions
Most countries in the region have public residential institutions, except Lebanon, whose institutions are all run by civil society organizations and funded by the government. Private institutions were more likely to have high staff turnover due to job dissatisfaction and low wages. Various governmental and non-governmental bodies, individuals and/or families covered residency costs for persons with disabilities, depending on the type of institution (i.e., public, private for-profit or private non-profit).
Types of care provided
Care provided in institutions varies in quality and scope. While some institutions provide only food and shelter alongside basic medical services, others offer specialized services, such as rehabilitative medical care, formal, informal and vocational education, employment support, psychosocial support, transportation assistance, and activities outside the institution. Only six out of 19 institutions interviewed provide in-house formal education following national curricula, though others offer non-standardized educational programming, such as literacy classes.
Monitoring of institutions
All directors of institutions reported that their institutions were regularly inspected by government bodies but given the often poor living conditions within some institutions, standards and procedures for such monitoring were unclear. Additionally, reporting and monitoring processes frequently varied between public and private institutions, and at times, government officials expressed lacking influence over institutions in the private sector. Morocco’s Act No. 65-15 of 2018 on the governance and monitoring of residential institutions, which requires institutions to create internal monitoring committees, is a notable example of progress in this area.
Obstacles to independence
In interviews, the majority of directors of institutions stated that institutionalized persons with disabilities had limited prospects for independence or integration into formal school systems, the labour market and/or society at large. According to these interviews, the majority of institutionalized persons with disabilities were illiterate. Those who received formal education outside the institution accounted for less than five per cent of the total number of residents in all 19 institutions. In case studies of two institutions, more than 80 per cent of interviewed residents were reportedly either never offered an opportunity to go to school or had dropped out of school.
The study found only a few instances of residents employed inside or outside institutions: many worked for low wages, and in some instances their parents received their remunerations. For residents with access to education or employment, decisions on what they should study or where they should work were often made by caregivers or parents.
The study revealed a complex relationship between the staff of institutions and the families of persons with disabilities: a lack of successful communication between these two parties appeared to create additional challenges for residents. While staff referenced a lack of familial involvement in the lives of institutionalized persons, interviewed parents mentioned that they felt they did not have the skills necessary to adequately support their children. Case studies showed that disconnect between family members and staff regarding care plans occasionally resulted in difficult and emotionally taxing situations for persons with disabilities, particularly when transitioning back and forth between their communities and the institution.
In 10 of 19 institutions, staff perceived residents as likely to stay permanently, and described social stigma as the main barrier to integration. Persons with disabilities, however, viewed the lack of employment and education opportunities as the central barriers to their independence.
Strategies for deinstitutionalization, integration and inclusion
While the majority of the 13 public officials interviewed for this report supported deinstitutionalization, few disclosed any specific plans and timelines. A key exception is Jordan, which has a ten-year plan mandated by law to close institutions for persons with disabilities by 2027. Jordan’s plan intends to replace residential institutions with alternative community-based facilities such as group homes and independent living centers, in addition to providing training and financial support to families to help them accommodate residents with disabilities at home.
While Jordan was the only country surveyed that possessed a concrete plan to close residential institutions, public officials from other countries mentioned strategies intended to increase the inclusion of persons with disabilities in communities and thus lessen the use of residential institutions. The public official from the State of Palestine described plans to create new accessible housing units for persons with disabilities, and to provide medical equipment and financial support to persons with disabilities and their families. In Morocco and Lebanon, efforts to increase social inclusion have prioritized improving persons with disabilities’ access to formal and informal education. Saudi Arabia intends to promote deinstitutionalization through expanding care subsidies and providing training to families. While the majority of interviewed public officials affirmed the importance of increasing the inclusion of persons with disabilities in public life, throughout the region, there was little evidence of state-led plans with the end goal of closing residential institutions.
Gaps in data
Officials and representatives from 14 Arab States (Bahrain, Iraq, Jordan, Lebanon, Mauritania, Morocco, Oman, Palestine, Qatar, Saudi Arabia, Sudan, Syria, Tunisia and Yemen) provided basic numerical data on institutions offering residential services for persons with disabilities and/or the total number of institutionalized persons with disabilities in their respective countries. However, the research team often encountered a lack of distinction between residential and non-residential institutions, as well as an absence of data on private institutions. The research team also identified a significant lack of disaggregated data regarding the age, sex, and disability types of persons with disabilities living in institutions. A notable exception was Jordan, which made available current and detailed official statistics on persons with disabilities, including institutionalization rates disaggregated by gender and country of origin. Without proper data on institutions, it is difficult for governments and other interested parties to fully monitor the implementation of Article 19.