Report on the site visit to the institution
Door: Jolijn
Blijf op de hoogte en volg Jolijn
22 Juli 2012 | Hongarije, Boedapest
Today in the early evening we did our homework in our small groups of 3. We had to make a monitoring-report of the visit to the institution. We had all prepared some points to address, and we put it all together in one report.
Here are our findings:
THE RAY OF HOPE SOCIAL CARE FACILITY: A LIVED REALITY
On 19 July 2012 a task team – consisting of a user and survivor of psychiatry, a legal researcher and an attorney – was requested to conduct a monitoring exercise of the Ray of Hope social care centre in Budapest, Hungary. The task team was explicitly requested to interrogate five central themes, namely: living standards and conditions; living independently and being included in the community after discharge; education, training, work and employment; and correspondence and visitors. These themes were informed and evaluated against the ITHACA toolkit for monitoring Human Rights and General Health Care in mental health and social care institutions.
Whilst a monitoring exercise ideally should be carried out over an extended period of time with several follow visits, due to strict deadlines, we were constrained to a single visit of approximately two hours. Herebelow are our observations:
Living independently and being included in the community after discharge:
(Sources: Staff and Residents)
• There has been only 1 case of discharge in recent years, when a family decided to move to Germany and took the related resident with them.
• The institution aims to institutionalize more persons in the future, including persons with milder disabilities.
• There is nobody effectively in charge of the process of discharge, as this isn’t happening in practice.
• There are no services in the community and no alternatives in the local area, so there is hardly any choice for families and residents in avoiding institutionalization in the Ray of Hope.
• There is a waiting list, so there is no free choice on institutionalization.
• All the residents are under guardianship, so they lack legal capacity on matters related to institutionalization.
Education, training, work and employment.
(Sources: Staff and Residents)
• The special school was just one small room, which provided space for a maximum of an estimated 8 persons, which is physically excluding around 108 persons from education.
• Some residents expressed their wish to learn to read and write. However, school education was only available till age 18, as until then this is compulsory by the state This implied that only 3 persons went to the special school. It was said that “adults don’t need to go to school”. (They seemed not be aware or willing that compulsory education for persons with disabilities is extended till age 24).
• There were no efforts made to educate and/or to advance intellectual abilities for adults. This means there was no stimulation of school learning activities for 113 persons (99,97%).
• There were no books, notebooks or blackboard for teaching, only toys, which made the room resemble to the occupational craft room upstairs.
• There were some residents on mattresses on the floor, behind the room divider in the class room, which seemed to get no attention regarding teaching.
• Not all residents participated in stimulating activities or programmes for advancing skills. A number of residents were just maintained in their current state of capacity, without efforts for habilitation.
• The programmes of the institution were designed to maintain the capacities of the residents, and not educate, train or provide working opportunities.
• The paintings that were made by residents could not be sold, because there were legal issues.
• The actual percentage of residents participating in programme activities is unknown.
• Not of the residents were engaged in work.
Correspondence and visitors
(Sources: Staff and Residents)
• Staff mentioned that nuns visit the institution regularly.
• Many residents were never visited by family members or other members of the community. Only a few residents had contacts with family, and only very few on a regular basis.
• Nurses said there were cultural barriers in getting Hungarian volunteers, and international volunteers were experiencing language barriers, so also didn’t come. They seemed to not challenge the absence of volunteers.
• Residents were not permitted to leave the facility to visit family out of their own.
• There does not seem to be any communication from the residents to the outside world.
• There doesn’t seem to be any provision to increase communication We did not observe any residents carrying mobile phones, nor did we see any pay phone or accessible other means of communication.
• There doesn’t seem to be any provision to facilitate any traditional or electronic letters. (only 1 person was said to have internet access).
• Staff said visitors were welcome any time of the day. We didn’t see any evidence to validate that.
• There were not any rooms to receive visitors.
Habilitation and rehabilitation:
(Sources: Staff and Residents)
• The vision of the institution on (re)habilitation was that it is not possible to enhance skills of the residents.
• From our interaction with staff and residents it appears that residents are permitted to do their own things, but in practice the meaningful activities are on an absolute minimum.
• There were some activities, but they were not based on choice, but on institutional activity plans.
• We were informed that social, physical and occupational activities were available, but most of the equipment was new and unused (there was dust on several attributes).
• Staff stored personal belongings in activity rooms, which suggests these rooms aren’t used according to their purpose.
• Activities were assigned to residents due to what was assumed to be in their best interest.
• It is doubtful if there were any meaningful and enjoyable activities, because individual plans were designed for them and not in close consultation with the resident involved.
• Agreement with family on individual plans would be sought, but if not obtained, the plan would be run anyway.
• There was no organized peer support structures.
Living standards and conditions:
(Sources: Staff and Residents)
• We observed freshly cleaned wards.
• Despite the fact that all windows were open, the place was smelly, which indicates that the institution isn’t properly ventilated.
• Our observations are that the facilities were working and of an adequate standards, which we expected from a freshly renovated institution.
• The building structure did not allow residents to move around freely, as there were many locked doors throughout all the building.
• The locks on the doors of all dormitories suggest that all residents are locked away for the night time, in average in groups of 4 residents.
• The structure of the institution, such as dormatories, doesn’t allow for any privacy or independent living.
• Wards and furniture looked all the same, and the only variation was the colour of the walls. There was no diversity, no individually tailored setting, and no special design to comfort women, men and children.
• Light switches in dormatories and throughout the wards were placed very high on the wall, out of reach for many of the residents, leaving them incapable to switch the light on or off.
• Clocks were not running, or not running on time, which disables orientation in time of the residents.
• Only 30 persons out of 116 had an access pass which they could use to enter the living room. (75% did not have personal access to the living room)
It seemed that these passes also unlocked doors between wards and corridors.
• Persons with passes led other persons around, as if they were their personal assistants, and opened doors for them.
• In cases where a resident accompanied another resident to enter a ward, nurses would check if there was a nurse present for supervision at the ward. This suggests that there are not always nurses present at all wards.
• Nurses supervised that certain persons were not leaving the ward, eagerly closing and locking doors.
• Many persons with decreased mobility were at the first and second floor, unable to leave the floor, while there were stairs which are unaccessible for a lot of persons with physical or (severe) intellectual disabilities. This means a severe restriction in their liberty, implying no free access to fresh air and sunlight.
• There was insufficient staff to provide individual support to the residents.
• A number of residents spent their day time in bed.
They were obviously physically unable to get out of their beds all by themselves.
• Many of the residents were strapped to their wheelchairs, which seemed to be rather an orderly measure, than based on their wishes.
• Some residents were further restrained, such as a person with cloth around his hands, disabling him to use his hands. This was said to be done because he chewed his hands. There were no visible efforts of assisting him in using his hands, nor any alternatives in place to prevent this chewing.
• Daily activities for all residents were eating, sleeping and getting dressed.
• A number of residents were still in bed and therefore not dressed in day clothing.
• Some persons wore no pants, and were displayed to us in their underwear. Nurses seemed to find this a normal practice, and didn’t mention anything about this.
• Closets in dormatories were having locks, and half of them were also placed high. It is unknown whether residents do have free access to their closets, but the impression is that this is not the case as the closets are high/ out of reach.
• The closets were small so they don’t provide much space for clothes.
• Food was only available on the scheduled times, with no choice in type or amount. Extra food or drinks (on demand) were not provided for the residents.
• Water wasn’t freely available or accessible for the residents.
• When a resident would get food or candy from a visitor, nurses explained he/she would be encouraged by the nurse to share it with the group of residents at the ward.
• We weren’t able to observe anything related to the quality of food.
• The dining rooms were small, open nooks in the corridor, which provided not much space for the residents.
• We observed some thin persons, but we were unable to observe or assess if this was malnutrition.
• Nurses were on low wages, with a huge workload, and burn-out is common amongst the staff.
• Despite the nice weather there were hardly any residents in the garden. However a lot of staff were seen outside, enjoying their break time, even in groups.
Conclusion
It is evident from the above observations that the Ray of Hope social care centre – whilst adequate in conventional structure – fails in a number of key priority areas identified in the United Nations Convention of the Rights of Persons with Disabilities; particularly the inclusionary approach mandated thereby.
No recommendations may be made at this time due to the nature of the report.
Here are our findings:
THE RAY OF HOPE SOCIAL CARE FACILITY: A LIVED REALITY
On 19 July 2012 a task team – consisting of a user and survivor of psychiatry, a legal researcher and an attorney – was requested to conduct a monitoring exercise of the Ray of Hope social care centre in Budapest, Hungary. The task team was explicitly requested to interrogate five central themes, namely: living standards and conditions; living independently and being included in the community after discharge; education, training, work and employment; and correspondence and visitors. These themes were informed and evaluated against the ITHACA toolkit for monitoring Human Rights and General Health Care in mental health and social care institutions.
Whilst a monitoring exercise ideally should be carried out over an extended period of time with several follow visits, due to strict deadlines, we were constrained to a single visit of approximately two hours. Herebelow are our observations:
Living independently and being included in the community after discharge:
(Sources: Staff and Residents)
• There has been only 1 case of discharge in recent years, when a family decided to move to Germany and took the related resident with them.
• The institution aims to institutionalize more persons in the future, including persons with milder disabilities.
• There is nobody effectively in charge of the process of discharge, as this isn’t happening in practice.
• There are no services in the community and no alternatives in the local area, so there is hardly any choice for families and residents in avoiding institutionalization in the Ray of Hope.
• There is a waiting list, so there is no free choice on institutionalization.
• All the residents are under guardianship, so they lack legal capacity on matters related to institutionalization.
Education, training, work and employment.
(Sources: Staff and Residents)
• The special school was just one small room, which provided space for a maximum of an estimated 8 persons, which is physically excluding around 108 persons from education.
• Some residents expressed their wish to learn to read and write. However, school education was only available till age 18, as until then this is compulsory by the state This implied that only 3 persons went to the special school. It was said that “adults don’t need to go to school”. (They seemed not be aware or willing that compulsory education for persons with disabilities is extended till age 24).
• There were no efforts made to educate and/or to advance intellectual abilities for adults. This means there was no stimulation of school learning activities for 113 persons (99,97%).
• There were no books, notebooks or blackboard for teaching, only toys, which made the room resemble to the occupational craft room upstairs.
• There were some residents on mattresses on the floor, behind the room divider in the class room, which seemed to get no attention regarding teaching.
• Not all residents participated in stimulating activities or programmes for advancing skills. A number of residents were just maintained in their current state of capacity, without efforts for habilitation.
• The programmes of the institution were designed to maintain the capacities of the residents, and not educate, train or provide working opportunities.
• The paintings that were made by residents could not be sold, because there were legal issues.
• The actual percentage of residents participating in programme activities is unknown.
• Not of the residents were engaged in work.
Correspondence and visitors
(Sources: Staff and Residents)
• Staff mentioned that nuns visit the institution regularly.
• Many residents were never visited by family members or other members of the community. Only a few residents had contacts with family, and only very few on a regular basis.
• Nurses said there were cultural barriers in getting Hungarian volunteers, and international volunteers were experiencing language barriers, so also didn’t come. They seemed to not challenge the absence of volunteers.
• Residents were not permitted to leave the facility to visit family out of their own.
• There does not seem to be any communication from the residents to the outside world.
• There doesn’t seem to be any provision to increase communication We did not observe any residents carrying mobile phones, nor did we see any pay phone or accessible other means of communication.
• There doesn’t seem to be any provision to facilitate any traditional or electronic letters. (only 1 person was said to have internet access).
• Staff said visitors were welcome any time of the day. We didn’t see any evidence to validate that.
• There were not any rooms to receive visitors.
Habilitation and rehabilitation:
(Sources: Staff and Residents)
• The vision of the institution on (re)habilitation was that it is not possible to enhance skills of the residents.
• From our interaction with staff and residents it appears that residents are permitted to do their own things, but in practice the meaningful activities are on an absolute minimum.
• There were some activities, but they were not based on choice, but on institutional activity plans.
• We were informed that social, physical and occupational activities were available, but most of the equipment was new and unused (there was dust on several attributes).
• Staff stored personal belongings in activity rooms, which suggests these rooms aren’t used according to their purpose.
• Activities were assigned to residents due to what was assumed to be in their best interest.
• It is doubtful if there were any meaningful and enjoyable activities, because individual plans were designed for them and not in close consultation with the resident involved.
• Agreement with family on individual plans would be sought, but if not obtained, the plan would be run anyway.
• There was no organized peer support structures.
Living standards and conditions:
(Sources: Staff and Residents)
• We observed freshly cleaned wards.
• Despite the fact that all windows were open, the place was smelly, which indicates that the institution isn’t properly ventilated.
• Our observations are that the facilities were working and of an adequate standards, which we expected from a freshly renovated institution.
• The building structure did not allow residents to move around freely, as there were many locked doors throughout all the building.
• The locks on the doors of all dormitories suggest that all residents are locked away for the night time, in average in groups of 4 residents.
• The structure of the institution, such as dormatories, doesn’t allow for any privacy or independent living.
• Wards and furniture looked all the same, and the only variation was the colour of the walls. There was no diversity, no individually tailored setting, and no special design to comfort women, men and children.
• Light switches in dormatories and throughout the wards were placed very high on the wall, out of reach for many of the residents, leaving them incapable to switch the light on or off.
• Clocks were not running, or not running on time, which disables orientation in time of the residents.
• Only 30 persons out of 116 had an access pass which they could use to enter the living room. (75% did not have personal access to the living room)
It seemed that these passes also unlocked doors between wards and corridors.
• Persons with passes led other persons around, as if they were their personal assistants, and opened doors for them.
• In cases where a resident accompanied another resident to enter a ward, nurses would check if there was a nurse present for supervision at the ward. This suggests that there are not always nurses present at all wards.
• Nurses supervised that certain persons were not leaving the ward, eagerly closing and locking doors.
• Many persons with decreased mobility were at the first and second floor, unable to leave the floor, while there were stairs which are unaccessible for a lot of persons with physical or (severe) intellectual disabilities. This means a severe restriction in their liberty, implying no free access to fresh air and sunlight.
• There was insufficient staff to provide individual support to the residents.
• A number of residents spent their day time in bed.
They were obviously physically unable to get out of their beds all by themselves.
• Many of the residents were strapped to their wheelchairs, which seemed to be rather an orderly measure, than based on their wishes.
• Some residents were further restrained, such as a person with cloth around his hands, disabling him to use his hands. This was said to be done because he chewed his hands. There were no visible efforts of assisting him in using his hands, nor any alternatives in place to prevent this chewing.
• Daily activities for all residents were eating, sleeping and getting dressed.
• A number of residents were still in bed and therefore not dressed in day clothing.
• Some persons wore no pants, and were displayed to us in their underwear. Nurses seemed to find this a normal practice, and didn’t mention anything about this.
• Closets in dormatories were having locks, and half of them were also placed high. It is unknown whether residents do have free access to their closets, but the impression is that this is not the case as the closets are high/ out of reach.
• The closets were small so they don’t provide much space for clothes.
• Food was only available on the scheduled times, with no choice in type or amount. Extra food or drinks (on demand) were not provided for the residents.
• Water wasn’t freely available or accessible for the residents.
• When a resident would get food or candy from a visitor, nurses explained he/she would be encouraged by the nurse to share it with the group of residents at the ward.
• We weren’t able to observe anything related to the quality of food.
• The dining rooms were small, open nooks in the corridor, which provided not much space for the residents.
• We observed some thin persons, but we were unable to observe or assess if this was malnutrition.
• Nurses were on low wages, with a huge workload, and burn-out is common amongst the staff.
• Despite the nice weather there were hardly any residents in the garden. However a lot of staff were seen outside, enjoying their break time, even in groups.
Conclusion
It is evident from the above observations that the Ray of Hope social care centre – whilst adequate in conventional structure – fails in a number of key priority areas identified in the United Nations Convention of the Rights of Persons with Disabilities; particularly the inclusionary approach mandated thereby.
No recommendations may be made at this time due to the nature of the report.
Reageer op dit reisverslag
Je kunt nu ook Smileys gebruiken. Via de toolbar, toetsenbord of door eerst : te typen en dan een woord bijvoorbeeld :smiley
