Inclusion and Deinstitutionalization

The head of the institution reported working on a new “reverse integration” programme, whereby more than 2,500 school students and a number of non-governmental organizations visited the institution yearly. As part of the programme, students and volunteers participated in activities with the residents and learned about the Braille system with them. Reverse integration, however, assumes that inclusion involves preparing society to tolerate persons with disabilities, irrespective of whether or not persons with disabilities move out of institutions to live within communities. Given that these interactions (i.e., volunteering and visiting) are inside the institution and temporary, reverse integration is not necessarily related to inclusion or deinstitutionalization.  

Interviewed residents revealed a variety of ideas about the kind of support they needed for independence. The majority of interviewed residents described employment and financial independence as necessary to achieve autonomy. Some residents also listed marriage as an indicator of independence. Three residents were ambivalent when asked to describe their futures outside the institution. One resident said that she liked the center and would prefer to remain there. Another resident said stated that he was not comfortable around people outside the institution, while a third said that he could not assimilate into the community because he needed people around him who were able to understand his special needs. 

Caregivers considered the individual’s self-acceptance, realistic life expectations, mobility (i.e., the ability and freedom to move independently) and physical appearance as equally important factors for the independence and inclusion of a person with disability into society outside the institution. According to one caregiver, persons with hearing impairments had a higher level of mobility and capacity for independence. Another caregiver stated that “the most important criterion for independent living is for the person with disability to accept himself/herself.” A third caregiver argued that sometimes residents have unrealistic life aspirations that hinder the achievement of the autonomous lives they envision. 

According to the head of the institution, underage residents could not leave without a parent, but those who are above 18 could receive permission from the institution to go out. One resident expressed his dissatisfaction with that routine because he wanted to have a busy life full of outings, not necessarily revolving around trips home. He stated that he liked to go out to different places without a guardian or a companion, but that he was not allowed to do so unless his mother gave her consent. The director maintained that “what applies at home, applies in the institution. Even if you are living at home, you inform your parents when you are going out.” Her insistence on the family metaphor reinforces the idea that residents are at home and not at an institution. 

When residents were asked how easy it was for them to move in and out of the institution, all reported not being allowed to exit the institution unless they had obtained a spoken and, in some cases, written or signed permission of their parent or guardian. When describing persons with disabilities’ autonomy, one of the caregivers stated that “Persons with disabilities are autonomous inside of the institution and not outside of it. They cannot handle the outside world.”  

Caregivers stressed the role of parents in supporting the independence of persons with disabilities. In interviews, staff stated that residents needed to feel valued because they were marginalized individuals. Only one caregiver suggested that public spaces should be made more inclusive and that medical support could be of use.

When family members were asked about the support that they needed, they generally focused on vocational, medical and financial support. The majority said that they could only feel secure about their relative’s future once they knew that he/she had a stable job. They also requested help in terms of specialized equipment, such as hearing aids. 

Among residents with moderate medical cases, the majority typically stayed for at least 20 years. According to one caregiver, institutionalization ends in two ways: if the resident obtains employment or if the resident’s case can no longer be managed by the institution. The latter occurs when the institution has exhausted all rehabilitative options and the resident has not shown any signs of improvement, or if their case has grown worse.