In the NGO Impulses program, Marta Anđelić from NGO “Adria” was a guest, and the topic of discussion was addressing the problems faced by people with disabilities who already live with elderly and increasingly frail parents. Supported living was also a topic of the meeting held at the premises of this NGO on Friday.
RB/BI: The greatest fear of parents whose children have developmental issues is what will happen to them when they are left alone – parents age, and they themselves become ill and need support. What should the state do for them?
Anđelić: It is truly high time to provide adequate attention and support services to people with psychophysical developmental disabilities because, as you mentioned, they are getting older, and so are we as parents. Our greatest nightmare, something we literally think about every day, is what will happen to them after us. We have invested a lot and will continue to invest as long as we can in their socialization and integration into the community, to be with us, as part of the family and the community. They genuinely need a support service that will take care of them after us. That is the biggest concern and struggle of all parents because both we and they are getting older and sicker. All our users are over 30 and 40 years old.
RB/BI: There are some in the city who are even 60 years old.
Anđelić: Yes, there really are. And they all need support services. The existing ones need to be adapted to the needs of these individuals. They are the most invisible category of people with developmental disabilities and people with disabilities. Only our association works with them. We work every day, as best as we can, because as you know, there is no membership fee – since 2001, when we were founded, we have not charged a membership fee or any service. We work as we can and as much as we can, we cooperate with parents, but the problems are increasing.
RB/BI: You pointed out these problems even twenty years ago. All this time, you have been saying that support for living is needed, so they are not moved to institutions like nursing homes, where they do not have adequate conditions and care, because living is not just about getting food and being treated.
Anđelić: Exactly. In 2001, the first request was sent to open a multifunctional center for people with developmental disabilities, where both children and the elderly would be, according to the needs of the users. However, in 2023, we do not even have a Day Care Center for children with developmental disabilities, let alone any support service for adults with developmental disabilities. I cannot understand why that does not exist. Related associations and our association are fighting as best as we can. We deal with adults because we think it is now a priority. Inclusion has begun, it is somehow going, there are associations dealing with children, but no one pays attention to adults with developmental disabilities.
RB/BI: You have done a lot to make these individuals visible. They have always existed, but they were some quiet, invisible citizens of this city until you founded your association.
Anđelić: Unfortunately, that is true, and later other associations were founded. And I did that because I believe they are also members of the community, our society, that despite their “deficiencies,” which are their natural state, they can offer a lot. And I was right. If you remember how well-attended our concerts were, where Radio Bar and all other associations, cultural-artistic societies, writers, singers, and security personnel who looked after the concert supported us. About 300-400 children passed through the stage, it was fantastic. But what was most important to me were those five minutes of “fame” for our users, whom many in Bar saw for the first time. Prejudices and stigma are still significant. They always come from ignorance, so we strive to make them visible and to participate in community life according to their abilities and needs. Only when they become visible in this way can we reduce the prejudices and stigmatization of these people in the community. There is no other way.
RB/BI: Were there prejudices and stigma in their families when you started working?
Anđelić: Of course! I think there still is. We provide psychosocial support to families, we have conducted numerous workshops and seminars, I wouldn’t list everything. Unfortunately, even today, families expect the most help, not realizing that they also need to make an effort for some things. Neither our association nor I as an individual, no one can solve it completely, but together we can do a lot, in cooperation with families and the community, institutions that deal with this population, we can do a lot. We discussed that – it is really high time and the right moment to implement supported living, at least as a pilot project in Montenegro.
RB/BI: Is there any response from the institutions?
Anđelić: I have been talking about this topic for years. Supported living is nothing new. At numerous meetings I have attended, both as a member of working groups, at meetings in our association, and seminars, I have asked people from institutions, from the community: What happens to them after us? No one could give me an answer. You said it well, we all know the answer, it is just difficult to say. It means their property is taken away, and they go to some homes, which is a trauma for them. It is already a trauma that they are left alone, and an even greater trauma that they are in an unfamiliar environment, with unfamiliar people and inadequate care, without any form of socialization, and with the lack of fulfilled time and needs they are used to. Institutions that could help need to understand that it is not that expensive. Everyone asks how much it costs, it does not cost much, we just need everyone to get involved and work together.
RB/BI: Essentially, it would mean that someone would take care of a person left alone – visit them, prepare a meal, help with household chores, take them to the doctor. And there should be records of how often this is done, everything should be free for them, and after their death, the state inherits the property that belonged to them.
Anđelić: That is the point. Their property should not be taken away immediately, that property can be used to pay for supported living after us. Or, if the disability is mild, two people could live in that apartment. For those who need 24-hour care, caregivers are needed, and support services should be involved to periodically check if everything is functioning properly. For those who cannot prepare a meal themselves, who need help, it is usually solved with a support service – Supported Living, where approximately three people stay in one house (an apartment is not suitable, as they need a yard). Everyone should have their own room, decorated as they wish, and their own bathroom. The common area is the living room, there is a cook, people who work, and something that is still unrecognized in our society, although I have been talking about it for twenty years, the profession of caregiver does not exist. It should either be a nurse who wants to do that or a trained person. There needs to be really good training because these are specific cases. Some need help eating, some dressing, some bathing. What is needed: a kitchen, three rooms, three shower bathrooms, one office, storage space, and a yard. It is not that big. The problem is just to build it, to find a common language, goodwill, and the desire to really form it in Bar, so we, as parents, can start with it. Believe me, they love it when volunteers come to them, when someone visits them. But that is for an hour or two, they cannot be with them all the time. They are happiest when they are together. We have one member who always says he would come, but there is no way, we have no transportation, and he is alone with his sick mother.
RB/BI: So, you have outlined the steps to be taken. Who will you approach first?
Anđelić: First, the Municipality of Bar. I am pleased that people with disabilities will be a priority in the Local Action Plan. This is not related to that local action plan, although it must be included in it. We can start these activities earlier. I would really like the Municipality to finally recognize our need and for us to work together. The Center for Social Work is very important, whose pedagogue and social worker can occasionally visit them. The Health Center – the chosen doctor and nurses-caregivers, who would work with them. I think the owner should not be our association or only the Municipality, but responsibilities should be shared so that we all take care of it. If these three institutions work together, there will always be someone to ensure there is no abuse, that they are clean, tidy, and everything functions properly. The most important thing is that when we are together, we are stronger and can help each other more. It is not about power or who founded it, but about doing something together for the benefit of these people. What I would expect from the Municipality is land or a house. From the Center for Social Work, we expect their professional work. There are possibilities for creative work, workshops. Pensioners who want to help or socialize with these people could also be involved. Due to prejudices, many do not know how nice it is to work with them, draw, make greeting cards, play board games with them. I already mentioned the Health Center, the doctor and caregiver, with annual health checks.
RB/BI: How feasible do you think all this you mentioned is at the moment?
Anđelić: If there is goodwill, it can start to be realized tomorrow. If not, well, 24 years have passed, and nothing has been achieved. Maybe there is goodwill among some
, but something is blocking it. As for us, today was the first, initial meeting, where we concluded that we need to renew the memoranda of cooperation. We have memoranda of cooperation with the Health Center, the Center for Social Work, and the Municipality, but I think they need to be renewed, new, younger people have come, many do not know everything we have done. In this way, we have initiated the search for a solution together. If it needs to be built, let us look for a donor together – the Municipality does not have to finance everything, there are IPA projects, international projects. When we apply together and act as partners, I believe it is much better than when we work alone, especially in the case of vulnerable groups.
RB/BI: Of all the vulnerable groups, they seem the most vulnerable because time is not on their side. We hope that their problem, at least regarding supported living, will be resolved as soon as possible. We will stay in touch, follow how everything progresses, and hope that their communal home will be established in the near future.
Anđelić: I hope so too, I have seen goodwill from the Municipality of Bar and the Center for Social Work. The advice of experts, the assessment of the Center for Social Work for supported living, is very important to us. Also, the Health Center, specifically the Mental Health Center, needs to be included in that assessment. As for the Municipality, I hope they have enough space to allocate (not in our ownership, it would be owned by the city), so they could continue their lives with dignity and decency after us. Because so far, it seems to me that is not the case.
