Services in Residential Institutions

The 19 residential institutions surveyed provided various kinds of services for persons with disabilities, falling into three groups. The first group, the majority, provided food, shelter, and basic medical and disability-specific assistance. The second group provided self-care education as well as basic literacy and informal education programmes aimed at transferring persons with disabilities to external formal schooling. The third group were formal schools certified by ministries of education and designed to both educate and provide care for persons with disabilities. 

Directors of institutions in the third group reported offering additional services including speech therapy, sports, arts and crafts, and entertainment activities. A few directors reported providing occupational therapy. Less than half of the institutions offered computer training and services, and in many cases, the use of devices such as phones and laptops was not permitted. 

The majority of institutions provided services for a wide range of disabilities. An institution in Oman provided specialized residential care for deaf persons, and institutions in Palestine, Tunisia and Yemen were schools for the blind. These four institutions offered specialized and focused support services tailored to specific types of disabilities.

Accommodation

The majority of directors stated that the available space at their institutions was suitable for the number of residents. Accommodation was mostly in group rooms separated by sex and with shared bathrooms, but the number of residents per room and users per bathroom varied. In some cases, persons with specific types of disabilities, such as quadriplegia, were assigned a private bathroom to accommodate their needs. Most group rooms accommodated between two to eight persons sharing one or two bathrooms. 

Despite no directors outwardly describing living conditions of their institutions as inadequate or inhumane, interviews did reveal instances of overcrowding and other troubling phenomena. 

At one public institution, the director reported that large beds were shared by five persons with disabilities. In some cases, group rooms accommodated up to 45 persons, and bathrooms were shared by up to 10 persons. When asked about bathrooms, the director of one institution commented “there are more than enough, because the majority wear diapers so they don’t even need bathrooms.”

Health Care

Health care was primarily provided through government hospitals and nearby health clinics. Only two directors, in the State of Palestine and Yemen, reported having a health-care system that involved carrying out regular medical check-ups and examinations at the institution. More than a third of the institutions did not have resident nurses, and more than half did not have a resident doctor. 

The majority of directors reported that many residents showed signs of depression or aggression. A few directors reported having nurses, a neurologist, psychiatrist or special educators available to provide psycho-social support. Very few said that their institutions conducted regular assessments that included a psychological element. Some institutions consulted external psychiatrists on a case-by-case basis, and sometimes referred these cases to specialized psychiatric hospitals or NGOs. 

Directors in the State of Palestine and Yemen stated that their institutions had hired professionals to study cases of depression or aggression. A director in the United Arab Emirates stated that the institution addressed cases of depression and aggression by means of “behavioral modification […] and drugs given to them by the psychiatrist.” A director of a public institution with no personnel qualified to treat such conditions stated that “they [the institution] have around three (…) children who break everything and push people around. We [the staff] don’t do anything to them because they’re sick and will not understand anyway.” 

While all institutions had some system through which residents could receive medical care, a significant number of directors reported recent deaths of residents. The director of one institution reported five resident deaths due to sickness, including two residents who passed away while at home. Another director of an institution where the majority of residents were bedridden reported that one resident per year usually died from choking. A third reported that 2-3 residents a year die from strokes. 

Education

Despite high levels of illiteracy among persons with disabilities, the majority of institutions reviewed in the study did not provide in-house education, and few persons with disabilities were reported to have attended outside formal schooling. A few institutions prepared persons with disabilities for outside formal schooling or special education facilities through informal catch-up classes and remedial support, and through securing their admission in nearby public and private schools. Persons with disabilities who were integrated into schools outside the institution accounted for less than five per cent of the residents of the institutions; few were reported to have made it to university. 

On the other hand, six[1] out of the 19 surveyed institutions were essentially educational institutions (certified public schools) for persons with disabilities. They provided specific levels of formal education (including vocational education) following the national curriculum. Still, some  persons  living in educational institutions remained illiterate, often those who were older.

Directors in Iraq and Jordan reported persons with disabilities being refused admission in nearby schools due to their disability. Dropout rates were particularly high among persons with autism spectrum disorder. Directors reported that some persons with disabilities dropped out of outside formal schools and special education facilities because other students made fun of them. 

Decisions regarding the education of persons with disabilities were either made by directors or by teachers, speech therapists, social workers, physiotherapists or the family. In some cases, these decisions were made by a joint committee comprised of social workers, teachers, and institution staff working together with the parents of the resident. A few institutions followed up on residents’ educational profile and helped them devise an educational plan upon completion of ninth grade or high school. 

Employment

Only six[2] institutions, four of which were private and two public, reported that some of their residents were working, most often inside the institution. Their salaries ranged from USD 50 per month to USD 500 per month.

Persons with disabilities who were externally employed tended to work in the service industry and in administrative positions, as well as in carpentry, tailoring and other crafts. A few worked as teachers. Directors reported that decisions related to employment and financial independence were often made by the directors themselves with the team at the institution, or by the resident’s family. Some institutions in Jordan and Lebanon gave salaries earned by working persons with disabilities to their parents for fear of them losing or squandering the money. 

Participation in Institutional Decisions

The vast majority of directors reported that there were no residents’ councils in their institutions. Some directors claimed that residents were either too young or too severely disabled to participate in institutional decision-making. A director of one public institution commented, “What would the children say, anyway? They can’t even talk.”. Only two institutions, in Lebanon and Tunisia, reported having councils of residents. 

Freedom of Movement

In the majority of cases, persons with disabilities were not allowed to move freely in and out of institutions. A few directors reported permitting residents to go out only after they had submitted a permission request stating the reason for and agenda of their trip. Only one director of a public institution in Tunisia reported that all residents could go out unescorted every day with prior permission. 

Duration of Stay

The majority of institutions did not have an age criterion for admittance or limits on the duration of residence. Persons with disabilities staying in the institution for long periods or their entire lives (25 years or more) were likely to be orphans or abandoned as children. This suggests that many institutions have no clear deinstitutionalization or integration goals, but rather provide shelter services indefinitely. When asked about the longest duration of stay, a director at one institution explained that it had no authority to release residents without families from care. Another director explained that persons with disabilities stay at the institution “until they die.” One other stated that persons with disabilities “never leave the institution, they love the place.”

The exceptions were institutions that focused on the integration of persons with disabilities in both the formal (six institutions in Lebanon, the Sultanate of Oman, the State of Palestine, Tunisia and Yemen) and non-formal (three institutions in Jordan and Tunisia) education systems. The duration of residence in these institutions, which were more likely to be private, was generally between three and 15 years, after which residents were transferred to a formal school or sent home to their families.

Quality of Caregiving

The ratio of caregivers to care recipients diverged considerably. While the majority of institutions had an average of one caregiver or nurse for every six persons with disabilities, in other institutions, this ratio was up to one caregiver or nurse for 17 residents. 

Nearly half of the institutions lacked qualified or specialized personnel, such as nurses, physiotherapists, speech and language therapists, occupational therapists or teachers. While the majority of direct helpers (caregivers and nurses) did not hold university degrees, most directors claimed that the medical and educational staff were qualified and held at a least a bachelor’s degree in the field of their work. 

Three directors reported that volunteers support persons with disabilities alongside paid staff. One director at a public institution reported that all staff members were nuns, and responsible for providing the majority of services to residents, including medical diagnoses and pharmaceutical prescriptions. Some directors at private institutions expressed the belief that employing qualified and educated nurses and caregivers for direct assistance was unnecessary. As one director explained, caregivers and nurses are “mothers, not educators”. 

More than a third of the directors reported that they monitor and evaluate their staff (particularly nurses and caregivers) by camera surveillance. Another group of directors reported evaluating caregivers based on achievement of pre-determined programmes designed by the institution. A third group described evaluating staff performance with appraisal and assessment tools including questionnaires with measurable objectives developed by directors, supervisors, doctors or other specialists. 

Directors rarely stated that they required their caregivers and nurses to submit reports, though some conducted observation periods followed by individual interviews or staff meetings to monitor performance. Only one director claimed that no monitoring and evaluation assessments were needed because “we [the staff] trust each other over here.” 

The majority of directors of both public and private institutions reported that they support their caregivers by means of professional and educational development, health insurance, salary raises, promotions, bonuses, motivation plans and gifts. Some institutions lacking qualified caregivers had conducted training workshops.

Directors reported noticeably higher personnel turnover rates in private institutions compared to public ones. Some directors, particularly of private institutions in the State of Palestine, explained that the main reasons were low salaries and job dissatisfaction. Directors of private institutions in Jordan expressed a strong dissatisfaction with the high staff turnover rates, considering it a waste of their efforts to invest in and train their staff. 

The majority of institutions allowed caregivers only limited participation in overall planning and decision-making; directors generally designed a rigid programme for caregivers to follow. Institutions with qualified staff, particularly those that provided education, were more likely to rely on caregivers to participate in the design and adaptation of programmes.