Interview content.
After more than 100 days of quarantine, it is important to note that many institutions specialising in support for persons with disabilities have been affected, including CAR residential care centres for young people and adults with intellectual disabilities who are in situations of abandonment or social risk. For this reason, AIEDI’s Communications and Public Relations team interviewed Cristian Garay Sánchez, director of the Niño Jesús de Praga CAR, about how the institution operates and how its activities have changed since the beginning of the pandemic.
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Could you briefly introduce yourself?
My name is Cristian Alfonso Garay Sánchez. I have a degree in Social Work from Federico Villarreal National University. I studied Social Work. I am currently director of the Niño Jesús de Praga CAR within the INABIF social programme; CAR means Residential Care Centre for young people and adults with disabilities who are in situations of abandonment or social risk.
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Please describe the objectives and functions of INABIF’s “Niño Jesús de Praga” CAR.
The CAR’s vision is to provide comprehensive support to the residents housed in our homes—we call them residents because they live there. Our aim is to provide comprehensive psychological and social support according to each person’s disability, foster their autonomy and meet all of the resident’s needs.
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Through what actions does the CAR seek to fulfil the rights of a person with a disability in relation to family, health and safety?
The residential centre has an organisational structure in which different areas work as a multidisciplinary team. First is the health area, made up of a doctor, nurse and nursing technicians. The social area includes the social worker, and the psychological area includes the centre’s psychologist. We also have a physical-therapy area and, until last year, an occupational therapist. All staff work together with the tutors—who are like symbolic parents—to provide residents with comprehensive support related to their quality of life.
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What is the education provided to residents at the residential centre like?
In education, psychologists, tutors, the social worker and occupational therapists assess each resident’s abilities and recommend to the social worker the centre or institution best suited to their educational needs. Residents have varied disability profiles, including mild, moderate, severe and profound intellectual disabilities. This influences the type of education they can access. Initially, some residents attended a CEBE (Special Basic Education Centre) in Zapallal, in the district of Puente Piedra, but because of their age they moved on to a CETPRO (Technical Productive Education Centre), where they attended workshops in baking, dressmaking and other activities. These opportunities apply mainly to young people diagnosed with mild or moderate intellectual disability. For those with severe or, in some cases, profound intellectual disability, tutors at the centre provide technical support through psychology and occupational therapy to reinforce basic skills, which is essential so that residents can gradually overcome some of the limitations they may experience. They begin with basic-skills workshops such as brushing their teeth, changing clothes and carrying out activities within the house or centre itself. We also reinforce these tasks with fine- and gross-motor activities and basic readiness exercises, all adapted to each resident’s profile. Residents are also enrolled in SIS and attend appointments with professionals suited to their needs.
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What is the current situation of CAR residents in relation to the COVID-19 situation facing the country?
The pandemic has prevented residents from attending educational centres such as CETPRO and OMAPED (Municipal Office for the Care of Persons with Disabilities), so we have sought ways to compensate for the loss of workshop-based learning. When residents attended these centres, they were accompanied by tutors who followed their progress and supported their learning. Although online classes are not the most suitable option for the needs of these young people given their disability, alternatives have been sought. For example, in baking and pastry workshops, staff have coordinated with the teacher’s instructions to prepare the relevant product. The pandemic has nevertheless limited access to the learning centres they attended. Disability affects the learning process, and for these residents in-person learning is more effective because virtual learning can be restrictive. During quarantine, the psychology team has therefore tried to compensate for shortcomings in CETPRO virtual classes by running workshops within the home, including values workshops and more advanced readiness activities. They also explain the situation to residents, because those who attend CETPRO and OMAPED have enough understanding to know that they cannot currently go to study, that the situation is temporary and that they will later return. Fortunately, with support from psychologists, the social worker and educators, residents have been able to cope as well as possible with the limitations on attending classes.
- What measures should be adopted to protect people with intellectual disabilities from coronavirus infection?
The young people with intellectual disabilities belong to a risk group. Even before quarantine, the CAR began implementing a protection protocol: washbasins were placed at the entrance, workers were required to wash on arrival, wear masks and change clothes in changing rooms before working with residents. When quarantine was formally introduced, approximately 83 workers were divided into two teams. Half of the workers entered the residence and stayed there in quarantine for one month without leaving; after that, the other half of the team entered. As a main requirement, workers went to INABIF’s central office for screening tests and, once it was confirmed that all workers had negative results, they were transferred to the residence for the internal handover. This helps prevent infection between workers and residents. To date, the system has worked and we can say that there have been no cases of infection among residents within the centre. We therefore operate a monthly quarantine protocol in which half the workers enter the centre in their respective roles. At the end of the month, the other group arrives after COVID screening, relieves the existing staff and in this way we protect the residents.
- How does a resident with a disability cope with social isolation?
At first, the young people asked why they could not go out for their usual activities in the district, such as walks and outings. Thanks to the work of the entire technical team, the situation was explained to them, awareness was raised and they understood it. The centre also has televisions on which they watch news and programmes accompanied by educators and psychologists who explain the situation. They have understood the reality well and there has not been a significant situation of frustration.
The centre’s facilities also allow residents to use open recreation spaces where they can play sports and distract themselves, which has helped them cope. Another positive change has been greater empathy between residents and staff. Because staff remain in the residence for a month at a time under the quarantine system, they spend more time living together. This has strengthened bonds between residents and workers, increased mutual understanding and improved behaviour.
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Through what actions is residents’ will and autonomy respected when decisions are made within a residential centre?
This is an approach that we have gradually changed at the centre, moving from an overprotective model to one in which residents can express their free will. Support for the exercise of legal capacity is adapted to the resident’s profile because a resident with severe intellectual disability may not be able to communicate a decision independently in some circumstances of daily life at the centre. A resident with a mild or moderate diagnosis can express what they want to wear, which clothes they want to change into, whether they want to eat lunch later, or suggest somewhere they would like to go for an outing. We present options and they choose. This year we have asked residents which CETPRO they would like to attend based on what they previously learned: would you like to work in baking, leatherwork, or cutting and sewing? They themselves decide which workshops they want to join. When it is time to do sport, some do not want to and they are not forced. At our centre, each resident has their own bed and wardrobe. Every morning they choose what clothes to wear and combine them according to their own criteria. Sometimes they ask whether a shirt looks good or bad, but ultimately the resident decides. I think these are small steps in supporting the exercise of legal capacity. Elections are a special example. On election days, residents were told they were going to vote and a large group decided that they wanted to do so. Staff from the National Jury of Elections provided training at the centre and gave them basic information about how to vote. They were taken to the polling places and ultimately exercised their free will to choose whom to vote for. I therefore think that each CAR is taking small but important steps so that residents can exercise their legal capacity, while taking account of the reality of each residence because every residence has different profiles and it is always important to adapt support to each setting.
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Under what conditions can a resident with a disability leave the CAR?
Residents who enter the centre are people who were in situations of abandonment or social risk, such as living on the street, being victims of physical, psychological or sexual abuse, or never having had family support. Discharge can therefore occur when there is a family member with whom work has previously been carried out to strengthen family ties, including home visits and verification that the family has the conditions needed to provide adequate support to the resident and continue the care provided by the centre.
The main requirement is that there be a direct or extended family member who can take responsibility and who has the conditions needed to provide the comprehensive support the resident requires. At this residence, residents are over 18; we do not have minors. For a young person to leave and function independently—to be able to support themselves—is a long-term process, because they come from institutionalisation. Many have lived in a residential setting since they were very young and have developed habits of dependence. Becoming independent therefore requires support so that the person can manage on their own. When someone leaves with their family, there is a six-month follow-up period carried out by the technical team, which includes social work, psychology, occupational therapy and, depending on the disability, physical therapy. Follow-up includes home visits, telephone calls and video calls.
At our residence, the circumstances for a resident to leave and live independently have not yet occurred, but we have supported residents who have worked. We had two residents employed at the Marathon store in the Mega Plaza shopping centre. They worked there and we transported them to and from work. They followed this routine for a considerable period, but were later transferred to another residence that brought together residents who were working, with the aim of developing a more independent approach with them.
- What recommendations can you offer families who have a family member with an intellectual disability?
It is always advisable to seek support from specialists because abandonment of people with disabilities often arises from a lack of knowledge about the disability a family member may have. Neglect or inadequate support by families frequently results from not knowing how to respond to the person’s needs. I would recommend that families of people with disabilities consult specialists such as physical and occupational therapists, psychologists and, in some cases, psychiatrists, because disability may sometimes coexist with psychiatric conditions and support therefore requires multidisciplinary work. It is also very important to have patience and empathy.
