Obstacles to Deinstitutionalization

According to many directors, the two main obstacles to deinstitutionalization were the community’s negligence and stigma against persons with disabilities, and the families’ inability to help because of their misunderstanding of disability. “To protect persons with severe disabilities from the cruelty of the community, we should keep them in institutions,” a director of a public institution in Iraq asserted, a comment echoed by several other directors, mainly at private institutions. They argued that persons with disabilities cannot live in society because no one will help them.

Directors from Jordan, Lebanon, the State of Palestine and Tunisia expressed dissatisfaction with families and parents’ unwillingness to take their children out of the institution. In Jordan, a director of a private for-profit institution also reported domestic violence and abuse by parents and family members and stated that some persons with disabilities had not seen their parents for at least three years. The majority of directors in all countries noted that parents rarely visit their children or take them out over the weekend. Staff members cited cases of parents keeping their children out of their communities and isolated in the house or institutions. In contrast, some institutions also discouraged parents from visiting or taking residents out: the director of a private institution argued that doing so raised the likelihood that “children would want to leave the institutions”.

At the Expert Group Meeting, multiple participants described the absence of community-based alternatives as a major barrier to deinstitutionalization, specifically highlighting the lack of financial and social support available to the families of persons with disabilities.  Representatives from Egypt and Lebanon mentioned the financial burden in-home care places on family members, though several participants noted that financing institutions is far costlier for governments than directly providing funds to families. Stigma surrounding disability was also frequently listed as a barrier to social inclusion and community integration in Arab countries.

Representatives from Jordan and Lebanon noted the specific challenges of providing care for refugees, foreign nationals and displaced persons with disabilities. The representative from Jordan noted the difficulty of facilitating the transitions of foreign nationals living in institutions into communities without family support. The representative from Lebanon described the need for greater assistance for Palestinians with disabilities living in Lebanon.  

Jordan’s representative additionally stated that the prevalence of private for-profit residential institutions presented a significant obstacle to the country’s deinstitutionalization goals, as these institutions lack an incentive to actively integrate residents into communities. Similar obstacles were noted by the representative from Lebanon, who mentioned the challenges of coordinating services within the country’s large number of private residential institutions, and by the representative from Palestine, who described the region-wide challenge of regulating private sector institutions that provide social services.  

Finally, multiple participants mentioned the challenge posed by discriminatory legislation, particularly personal status laws that deny persons with disabilities the legal capacity to make autonomous decisions. 

As seen in this chapter, the characteristics and regulation of institutions in Arab countries varies greatly, as do the persons living within them and the kind of services and care they receive. Aside from in Jordan, deinstitutionalization plans are mostly vague, though other methods to support independent living are being formulated, such as creating group homes and independent living centres; using awareness campaigns to promote independent living; passing governmental initiatives to make public spaces more inclusive; ensuring that national education curricula and exams are accessible to persons with disabilities; and allocating more money to the families of persons with disabilities to help them cover the fees of needed care services, including medical equipment. Unfortunately, stigma remains high and attitudes towards inclusion are discouraging. Moreover, the barriers to deinstitutionalization remain significant. However, in order to obtain a more informed assessment of life inside institutions in the Arab region, the researchers conducted case studies of two institutions, seeking substantive feedback of both staff, residents of institutions and their parents about life inside the institutions, as will be outlined in the following chapter.