Paolo & Francesca
Paolo and Francesca, 50 years old, are the parents of Valeria: a 22 years old girl with intellectual disability. The father works as electrician. The mother left her job in an administrative office when Valeria finished the school to rest with her daughter. We convene the interview with the two parents during a rehabilitation horse lesson. The location of the interview is the farm where our organization run a project based on the participative construction of a greenhouse. The greenhouse project involves a group of families with intellectual disabilities.Frascesca starts: “the main help we ask to the authorities regards the autonomy”. “We do not have home care assistance because when they look at our daughter they say she is not enough severe but the home service is needed by the families to improve the autonomy”. “With us, our daughter relaxes her self too much while with strangers persons she acquires much more autonomy. She attends a professional college where teachers say that she is not enough autonomous to make the work placement”.
“The problems started when the compulsory school finished because before I worked in my office and after I had to choose between continuing to work or start to take care of my daughter” the mother says.
“In many things we do not find an help. She was really good in painting for example but we haven’t' find nothing for her because she is disabled and everything is for the “normodotati” (normally equipped). Everybody say -”Oh my good! what a poor girl!”- everybody agrees but when is needed to make an investment to build something for this guys everybody just leave you alone. This is what has happened when I tried to build an association with other parents”.
“My purpose regards the future of this guys. What will happen to them when we will die? Who will stay with them? I do not trust institution and authorities because they do not give us nothing”.
“There are some centre that are like “lager” as the day centres: we have seen a lot”. “I do not go to the day care centre”. “I do not bring my daughter there because she has to have an interest in going there”. “Why does she have to go there? Just to rest? I don't need this service! I love my daughter so much that I would stay with her all day long”.
“I understand that she can't stay with me all the time, she has to stay with same age guys to talk with them and to socialize”. “This disabled guys are abandoned”. “Until they are in school you can receive some phone call by friends but now the school is finished: no one call, there is no friends, none”. “There is a lack of relationships for this guys”. “How do they pass the day? Neither her disabled friend call”. “What I mean is that is needed a qualified persons to stimulate their autonomy”. “The school pretends the autonomy to let her attend the work placement”. “But the autonomous disabled is not the only who can works: autonomy is something you can create together”.
This interview highlights the situation faced by the family when the school finishes. Emerges e problem of isolation regards the whole families that parents denounce for their daughter. A common enterprise with other families seems not to start up because of the reciprocal distrust. In this situation it's hard to find some context of socialization to develop the daughter's interests. The world of this family seems to be divided: on one side “the disabled” part; on the other the “normodotati”: an Italian word for “normally-equipped”. It seems interesting that the family asks for the home care assistance as a service to help the whole family. At the same time this family rethinks autonomy as a product of the kind of relationship you can build with “the person with disability”. This can be also a possible target for an home intervention conducted by a qualified person.
Luciana
Luciana is mother of a 14 years old child with autism. Sandra e Giovanni are the parents of Lorenzo, a 7 years old boy with Asperger syndrome diagnosis. They are in touch with the Disability Council of the VII Municipality of Rome. The Disability Council is an agency we are working with to develop innovative service for the families facing intellectual disabilities' problems. Luciana, Sandra and Giovanni asked to the council because they face a problem of marginalization within their community. At the same time it's difficult for the council to give an answer to this request because traditional services are usually individually oriented. The council on the other hand it's very motivated to help this families to face their problems.Luciana has three children, one of which, Antonio, is 14 years old with a diagnosis of severe Autism. She use the following public services: 6 hours of home care (by the Municipality), “support” teacher in the integrated classroom and AEC operator in the integrated school. AEC operators work in the schools to help people with disability to be integrated in their classrooms.
Luciana pays also some private services, run by cooperatives and professionals. "As mothers we can’t do much for our children but there is a lack of services: they are absent! We are fighting against the institutions and it seems that they are against us”. “Our children just disappear when they grow up as adult autistic persons cannot exist: the attention of services to our children just finish. Luciana says is worried about sexuality: ”Antonio discovers masturbation. How to explain these things? This is already difficult for a normal family, even further for us”.
Regarding school she complains that her son is treated like the others: in his enrolment at the school did not have priority. But she said also “I’m very angry because even at school my child is treated as "special" and cannot attend some activities”. “Why? I want him make the same things like the others!”
Here emerges the difficulty in dealing with the feeling of being "different": families claim the right to be different and at the same time want to be normal like everyone feeling to be stigmatized.
"We need a commission to assess the needs and priorities of children". She states that there are the same services are provided for different levels of severity. For Luciana on the one hand it is “correct” and on the other hand is problematic: “everybody pretend services against who really needs it". “We don’t have a support network” she says.
She states the lack of clear vision of the problems by the services providers: there isn’t a “filtering” function. There are "few services open to all" with families becoming competitors and conflicting for services as in a "war among the poor peoples"
Luciana asks for the possibility to give feedbacks regards the services she uses. “What can be useful for my son can be not useful for another one”. “However the services are useful because an autistic boy should always be followed: you never know what can happens".
Luciana suggests to contextualize the services considering the specificity of her family. Traditional services for home care, school support, or transition to work are not always requested. However the unpredictability of the relationships within the community is seen as a danger when the members of the families cannot control or understand reciprocal behaviours. To be helped in understanding the reciprocal behaviours seems a big request that the whole family posed to the services.
Luciana tells that her daughter goes suffer because other pupils make fun of her brother. She finally decided to write a letter to explain to everyone what it meant to have an autistic brother, what are her emotions about that. After the letter the other pupils understand her and start to get in touch with her and the brother in other way.
“Regarding when the school will finish there is the hope of finding a job for my son”. “The alternative is the day care centre but I do not want to put my child in day care centre: are lager”. “I prefer to stay with him at home and building directly on my own a project for him”. “I understand there we are are not open to external people. When we go out our sons disturb us and sometimes we feel ashamed”.
Sandra & Giovanni
Sandra and Giovanni says that “problems are always changing”. “We had resolved the past problems and now we face new problems”. “During the first years the majority of the problems regards the school: we had been unlucky”. “We had struggled with 3 schools as we ask an integration between Lorenzo's private therapist and the teachers”. “Unfortunately the teachers of these schools do not want to collaborate as they are scared to be evaluated them selves”. “Furthermore there are no referring point in the health institution”. “For example we have had problems in going to the dentist as if they are not adequate to get in touch with autism and disability”.Lorenzo's parents talk about their relationship with services. The Health system runs rehabilitative and therapeutic services addressed to the diagnosed person without “seeing” the family. On the other hand the services proposes a technical knowledge that the family start to apply to the child. In this way the technical knowledge seems to become the most important tool to get in touch with their son.
“Services have had a really important impact on our life: nowadays we even can't imagine ourselves without it”. “In the new school there is a good feeling between Lorenzo's therapist, school and family and now every think is good”.
For this family with a seven years old child seems a quiet moment. Some problematic situation seems resolved and they can look at the future with some kind of hope. On the other hand Sandra talks also about their daily problems they faces. “It was a continuous stress that impedes the daily life because of the emotional crises”. “The life our family is in danger when the unexpected crisis happen. “Now we understood a way to control our emotions to give him tools to communicate in a different way”. “Now it's ok for us”. “We found what we were looking for: we now have a good relationship with the community”. “It was a moment that the ABBA therapist come to our house two time a week”. “We don't ask to fix our life”. “Sometimes with the therapist you build a dependent relationship. Your son fall and you immediately call your therapist. We experienced this situation and we understood that it is not correct. Now we think that the services aren't the only way for future: we can face our problems without any help from the outside . Services are useful to help the families recognise their resources”.
Home assistant and therapist takes an educative and substitutive function in relationship with the family: a problematic function. On the one hand this family seems to ask for an help and a guidance. On the other hand seems scared by not being the taken for granted “normal”, autonomous, self-sufficient family. In this way emerge an important request of intervention regarding how to help the whole family recognise its internal and external resources and how to manage the fear of the being helped by someone stranger they may do not know.
Marcello
Asked about his experience Marcello tells us that at the end of compulsory school the services for the family and young adult with disabilities are drastically reduced."As long as the child is in the compulsory school there are a lot of answers. If he or she can go to school integration is facilitated. The problem is when he or she finishes school. The only thing the you can find is home care assistance or a day care centre. In this places the person with disabilities are isolated from the others.. They are care services that provide assistance and not integration. There are disabled and operators who work without interest and humanity. The problem is that many of the proposed activities are just for the disabled persons! The organizing principle of the services is this: after the development age the possibility of recovery is finished”.
Marcello speaks of the loneliness that emerges when the disabled person and the family feel to be isolated inside and outside their home. Inside the home care assistance service often, for Marcello, is realized by social workers "with little humanity"; outside the family, as an example in the day care centers, “there are strongly medicalized” services that seems not to help the families in reducing their isolation. Marcello says: "... there is no answers...from the age of 18 the answer is no more". Marcello repeats this sentence many times remembering their experiences with the day care centers and the other services for disability that him and her daughter make during their life.
“The answer there is no more ...” but what are the problems for which they ask an answer?
The school is the only context that Marcello evokes as "productive" for the problems related to mental disabilities. The school makes possible the relationships with other students and their families, with teachers and professionals. Recitals, school trips and birthday parties are opportunities to meet each other. The product of the school system is learning. An objective that, in "developmental age", allows the disabled persons to move toward the same objectives of “others”. Main aim of the school, in fact, is not rehabilitation but the learning of new skills for all its students. Unlike in the welfare system Marcello seems to find only a “lonely road for disabled persons”. Instead Marcello seems to ask “productive services”. The productivity for Marcello is the possibility to get in touch with other people interested to build a relationship capable to achieve some objectives. This is the humanity about Marcello is talking: “staying together not only to pass the time but to do something useful”.
Maria e Ada.
When we propose to join the interview Maria has not said yes immediately. It seems difficult for her to talk about her experience. Maria describes her daughter as "an hyperactive girl who always does whatever she wants and always has trouble to stay within the rules of contexts that she attends". For Maria “Ada inability in following the shared rules has led her to be expelled or not accepted by different contexts and disability services, such as group homes and day care centers". Maria lost her job two years ago so she started to pass a lot of time at home. At that time Ada was attending a day care centre but after she understood her mother do not work anymore she decides not to go to the day care centre. Maria, after hearing our question starts to talk about her neighborhood: “where I live, I have no relationships; there are no aggregation centre where to go with Ada…the few times I go out, I do it with some friends, mothers who have problems of disability in the family like me". This seems not enough for Maria, because she feels her condition to be different from her friends. "The disability of Ada is more serious than the one of the my friend’s children: they can do different activities, they can go to the cinema or to eat pizza; they are able to go out altogether, accompanied by some operators. The hyperactivity of Ada, instead, makes it difficult to participate in these moments".Emerges the difficulty of finding contexts able to help her daughter to share the rules. This difficulty also leads the mother to feel that they can’t to participate in social activities and community life like “the others” and this makes her feel excluded and isolated.
"One of the few services in which Ada participates is the “colony”, a summer camp for disabled youth, where I leave her alone with operators for two weeks. Another is basketball, some lessons for disabled youth organized, twice a week, by the social services of City Hall. But I do not participate in anything. The only thing I do is the nursery with you" Maria says.
This services seems to works usefully with a “respired care” function. On the one hand, one the problems of Maria is to find services where to leave Ada without a feeling of guilt. On the other hand seems to search for herself a reliable service helping her to organize her presents and future. Regarding the past Maria tell us the story and the main services which she has benefit over the years. She says: ”When Ada was a baby she was doing outpatient and speech therapy. She also went to school over 17 and a half years until she was accepted by the rehabilitative village, which unfortunately has closed, living a lot of families alone”.
Maria becomes sad remembering the time when, during the “development age”, using such services she felt not alone: “is not a problem of building structures, but of dealings (relationships whit the other people). What do you do with a guy with serious problem? The trouble is find something that motivate him and he likes to do… but you have to try, seeing and learning: it’s not easy”. “The parents, as we are, should have one’s own time. We would like for our kids something to keep them busy .If they're good we're good, that’s be fine!”.
What it’s mean to have time for a parent of a person with mental disability? She starts talk about the work she does whit us in greenhouse project. Maria is worried about the future. She is afraid that this work can stop. She says “…unfortunately parents die before their children.. I wish that the nursery project could increase, becoming a big social farm, where to produce something seriously and where Ada will be fine. …I would like that there are more times to sell plants in the markets so we could meet people, because in these moments Ada has fun”
“We are looking for a place, we cannot stay all the time together… we needs others.”
Kevin and Patrizia
Kevin, the 20 years old brother of Andrea, a 16 years old boy with mental disability, attends one our project. The first time we meet him he says us “I want to help, I’m a volunteer”.“I prefer to help because when I'm at home I do nothing. Few months ago I passed all the day crying, being terrorized and scared to death. I thought all they long about the sense of life I didn't find”. When we propose the interview to Kevin we asks us the possibility to involve her mother and we agree.The mother Patrizia is the first to speak after the question: “Andrea, my son, attends the day care centre, the horse and basketball lessons. We have no choice! There are no other structures for this disabled guys”. After Patrizia Kevin starts to speak: “What can I say about the place where we live? When we go out there is always someone insulting you or intimidating you for Andea’s condition”.
Patrizia and Kevin in this first part of the interview seems to look at the care services providers and their local community members as persons responsible for the problems of their family.
“I'm asking for home care assistance to bring Andrea out of home for a few hours. If he stays to much at home he becomes nervous, violent and starts to hit things, to broke things and to scream” Patrizia says. At this point Kevin says:“our problems are the problems of all the families with disabled persons: I'm sure of it. The problem is that my brothers do not execute the rules, he makes mistakes. Then my mother starts to scold him, we all became nervous, my mother and my brother start to beat each other, I start to beat my brother and he starts to beat me. Kevin continues highlighting that violence is a daily problem characterizing the relationships between the family members:“The only way to give him the rules it's fear and terror: my brother is terrorized by me and if I treat him he stay in behind the front line. But there is no solution: my brother do not execute the rules, he makes mistakes because he is unable to plead, he cannot choose, he cannot want anything”.
This seems a crucial point. The behaviors of the disabled person, seen as mistake to cancel, seem not have a meaning within the family context. The extreme consequence is that the whole life of the family risk to become uninterpretable: meaningless. In this situation the threat of violence and the reciprocal terror seems the only way to build some “shared rules”.
“One time Andrea tried to strangle me with a cord and I'm afraid he could kill me while I'm sleeping “ she says highlighting that the fear seems reciprocal for this family: all the family members seems to be terrorized by each other.
However desperation, fear and violence seems not the only emotions Patrizia and Kevin express in the interview.“Andrea is spending many hours a day at the phone with his girlfriend in the last period. He also opened a facebook account starting to add as friends many naked women” Patrizia says. “I cannot understand, there are also lots of man and little girl on facebook. Why the naked women? It's absurd” she adds.“But mum Andrea likes woman. It's not absurd” Kevin replies.
The interview shows how difficult is to understand the reciprocal behaviors when violence seems to impede the whole family in thinking about the meaning of their problems. From this point of view to help this families building a possible way to understand the reason of the reciprocal behaviors and feelings could be an important objective of the services for mental disabilities. This perspective seems possible as Patrizia and Kevin says us at the end of the interview (It can be also comic!!), can moderate the violence between the family members recovering the interpretability of a meaningful life.
Anna
mother of a girl with intellectual disabilities. She established an no profit organization and nowadays she manage a centre within offering laboratory and activities for the persons with mental disabilities. Pamela is a social worker working in the association since ten years.Expectations for the persons with mental disabilities
Pamela: “It is difficult to say what are the expectations, we always work for the immediate present and we don't build a plan for the future. As an example we try to work on the independent living but many families aren't ready for that and it's not easy to involve them”.
Anna: “My daughter is having many problems in her group apartment: she is 33 years old and it seems that she is going to decline”. “Probably would be better to have ready an independent living proposal when they are younger and want to go away from home. We always think the problem is after it's not true: the problem is the meanwhile and we loose time”.
Pamela: “Parents comes to us and they are angry, confused, bounced from a place to another. It seems as if they get the diagnosis and they start to be sent in different places without anybody really taking charge of their problems. They are full of doubts with too many referring point in their mind”
Factors influencing the quality of life of the persons with mental disabilities.
Anna: “I think the parents are a an important factor. We recently starts working with adolescents with some learning difficulties and maybe they have a teaching assistant. There isn't jobs at all and they will be marginalized they are at risk to start behave in a deviant way. Parents often says that the others are guilty but usually they are implied in the problems of their children”.
Pamela: “Many times the disability is a social problem. As an example professors came to us very angry to say what is wrong and what is right. I think that the message that arrives to the parents doesn't help, it make parents feel guilty. Person with mental disabilities are full of energy and is import to direct this energy to do productive things not to do disruptive things”.
Anna: “Also isolation is a big problem. Parents loose connection with friends, with relatives and they not prepared to face the reaction of the society. I remember when my daughter was a child I was shamed to go to the park and I remained at home”.
Factors improving the quality of life of a person with mental disabilities.
Anna: “I think we need to say frankly what is the problem understanding the problem within the context where the children life. Parents maybe be hurt at the beginning but I think that is very important to say the truth gently and wisely”.
Pamela: “families then have to be supported and accompanied to build a path, if not you launch the bomb and then you run away.
Role of the municipality and useful services.
Anna: “The problem doesn't regard the information but the confusion. Accessible public centre co-ordinating and supporting the families when the school finishes are needed: there will be less sick people as in the families with the disabled become also the brothers and the brothers become a little bit autistic.
Pamela: The training within the organization is needed: this year I decided to make a course cause I feel uncertain about some situation and I needed categories to understand and be an help for the clients.
Angela
the cousin of a person with mental disabilities participating in a social project for persons with mental disabilities.Expectations for the persons with mental disabilities
A disabled child is problem. A parent cannot leave the child at home normally even if is 30 years old. My uncle always tell me I'm sorry i cannot come where do i leave my daughter: she is going to freak out. The doctors told he the child would live until 18 but she is still living. The disabled persons ageing they was attending a loss that doesn't happen. That is the problem of the expectations. And there is the problems of the brothers with the parents always looking at the disabled child forgetting to take care of the other children and to think about their expectation.
Factors influencing the quality of life of the persons with mental disabilities.
I have been an operator for an ngo since 2007 we run a day centre working with the mental health centre organizing artistic activities for the person with mental disabilities. For the families the centre was important, it was like a dumping because when they parents are elders is difficult for them to take care of. If they leave their sons or daughter in the centre knowing that they stay well also the parents stay well.
One problem of the family is the fear of something bad happening. I mean the disabled persons freaking out and becoming aggressive. They often doesn't trust to let the children going out of home but in my experience most of the problems happen inside the home in their living context.
Factors improving the quality of life of a person with mental disabilities.
To have the possibilities to join productive activities is important. In this area apart for one organization no organization do this. The rehabilitation centre of this area are closing and the centre doesn't do productive activities. I saw that if a person with disabilities come to me to work in the artistic laboratory they he completed object if they want to bring it back home. They want something to show their mum and dad what they have done in the activity: persons with mental disabilities ask for it explicitly.
The continuity of the activities they participate is important. You can win a project one year and the next you don't. It is important to build sustainable project by producing and selling things so that you take some money to go on with the activities not depending just on public financing
Role of the municipalities
When I worked for the association we deal with the ASL and the municipalities they often don't give us a feedback. Sometimes we had problems with persons with mental disabilities becoming aggressive, we call them asking for advise about what to do. I think that for staff working with people with disabilities would be important to have more information about them, to know their stories what can make them nervous to prevent dangerous situations.
Useful services
For the family members I think is important not to stay closed at home, to do productive activities with others getting in touch with external places. But is not easy to do this if the parents do not recognise the problems preferring not to see it. In my experience in many cases I haven't find a solution and a way to help some families that think they don't have problems and it was difficult to persuade them about the importance of getting in touch with others. I think to find a way to deal with this and to find a strategy is needed.
Federico
brother of a girl with severe mental disability. He works as an operator in a centre run by his family, offering activities for person with mental disabilitiesExpectations for the persons with mental disabilities
The expectation for the disabled guys is to make them evolving from a social point of view. It's not only for the persons with mental disabilities it's also for the others. Look at Antonio who have brother with mental disabilities. The mother asks me if I can employ him in the centre she was worried about her sons attempt to suicide. I says her I can't employ him but he can come here doing volunteer work and feeling to be useful A normal person like Antonio he will never decide ask for an help from professionals but you can help him accepting him because in this world there are always
Factors influencing the quality of life of the persons with mental disabilities.
The problem is the marginalization. What does is the problem? The persons with disabilities or that jackals that make him feel marginalized and a part from the others? Where do the disabled persons stay? I have to say I never go out from this centre but I never see them in the street. The problem is that disability is a category stigmatized as the Hebrew, the Niger, the Crippled. Is it really needed to be integrated in a shitty society or it is better to create a little place like this where you can stay peacefully?
Factors improving the quality of life of a person with mental disabilities.
Happiness isn't possible. Families usually fight, parents divorced. The mum does the mum but the father doesn't accept and you are repudiated like a dog because of my god my son wont do the football player, because oh my god I wont go out for dinner in the best restaurant of the city. To improve the quality of life needs time the best artworks of the histories aren't build in one hour for example the divine comedy with the disabled person is the same. However is difficult to have a good quality of life nowadays. Everywhere people beat each others: this is the environment. The you heard that a parent massacred a professor because he expelled the son and the professor has good reasons. If the parents say to the son don't worry I will kill how can you stop? I think that id if there would be more options more choice as the possibility to send your son 4 5 hours a day also during the holidays would be better.
Role of the municipalities
I feel that the Region or other entities do promotional initiatives to go on the newspaper they are not really interested in what the organization do in this field. IT is not the information that are needed. The regional and the municipalities should help in becoming more solid, should talk and promote our activities. A contest to decide the best organization should be organized, competition can improve the quality of the services, also a guy that want to be a football players he doesn't do it for the money he do it for the goal. A place where everybody can go relax listen to the music and dance this I would ask to the municipalities
Useful services
Until my father is still here is OK but my thought goes to when he will die. We will see how many years my sister is going to live because unfortunately the disabled lives always less and she is fat and she takes psychiatric drug. I'm wondering what I will do when I will be bigger and maybe I will have a family and a child. I can also take my sister with me but if she become angry and she take my son and she kills him. So I have a place where she can stay quiet and relax. If not is normal that she become aggressive and she starts as me that I throw the punch to the door. I'd like she can live a normal live not travelling or staff like that is a luxury that I'm always here every day and I never take a day off. With my mother we imagined a place where person can cook, sells food to the customers coming to eat at lunch. This is an option because if you are 70 years old you aren't able to take care of the child all the day long.
Antonio
father of a 33 years old daughter with mental disabilities. He is the president of an association made by parents of person with mental health problems, person with mental health problems, psychiatrists, operators, citizens. The main project of the association is a musical band composed by many of the members of the association.Expectations for the persons with mental disabilities
The expectation is to maximize the autonomy in the daily life, understanding the limits. I say autonomy and occupation and not employment because it's difficult. However the idea is that when a person achieve a rehabilitation can get an employment, a job. The expectations regards the whole family cause is the family that build lot of things so the family is part of the problem. I saw lot of persons with disabilities getting older and the direction they take is the direction the family choose. It's not easy. Parents says they have to be independent but are often worried about having their sons moving independently round the city.
Factors influencing the quality of life of the persons with mental disabilities.
The management of the families issue is tiring. Every year you have to reinvent a program. What is she going to do this year? The system is quite perverse because specially for those persons who are not properly within one the psychiatric categorization because the neuropsychiatric department is the the referring point and have the responsibility of the interventions, after nobody is responsible and each family has to invent a path. And it arrives a moment of stalemate, impasse and you don't know where to go or which path follow. For the proper mental illness is different; there is the acute phase and the hospitalization and after the sending to the community based service. The mental health department remain a referring point. For the person on the border with the older age the problem come back to the management of the family also if your son or daughter attend some centre or activities.
Factors improving the quality of life of a person with mental disabilities.
So the important thing is to carry on the problem. There should be a multidisciplinary team coordinating the interventions. Who does guide this team? Every specialist says: it is not my field. I think that the ASL have to be this referring point in regards to the management, the verify of the interventions and the building of the paths. Then there are all the social and public stakeholders: the territory. Nowadays they are investing on the third sector but without a co-ordination it doesn't works. So the important thing are the relationship with the other families to stay on the move not to stop also if you do some mistake at least you are moving.
Role of the municipalities
We don't need a questions-answers relationship we need someone accompanying me, to feel that we are not lonely that we can share our experience. It's not a matter of having a flyer or a paper from the social service or the ASL. The users in the first access always pass from the doctors because they hope there is the possibilities to resolve the problem then they recognise they need to get in touch with others.
Useful services
I think you should be important to find a way to enter the emotional world of the person with mental disability as they are not as the psychiatric patient that apart from the acute phase are able to communicate. I think that their emotional world is incredibly wide but it's difficult that comes out and that can be possible to get in touch. Parents often have the hope of the medicines to resolve everything. This happens also with the associated parents of our organization, there is this emotional sphere that is difficult to communicate. They say you cannot understand this problem is mine. OK it's yours but if you trust you can you can see there are different dimensions and can become ours.
Sara
sister of a 17 years old boy with severe intellectual disability.Expectations about the persons with disability:
Until the persons with disabilities are 12 years old I can say there is somehow a reasonable path. After 18 you don’t know what to do or to expert. My brothers has attended a special school and nowadays that is 18 is he still wear pampers. To have some good expectations for the future it is necessary to build a serious path during the adolescence. If you don’t not things become more difficult, parents get elder, tired, no more capable to provide a proper assistance.
Factors influencing the quality of life of the families:
One difficulty is that, taking care of person with a severe form of disability, you find yourself isolated and lonely in understanding a person that usually has relational problems. At the beginning the families struggle for a diagnosis as a way to know what to expect for their life. Unfortunately the diagnosis doesn’t give this kind of information. At the beginning there is a big reaction within the families but then a feeling of resignation arise due to the lack of expected progresses in the cure and families start to search for the quicker cure and doctors, magicians forcing the boy to follow strict and stressful diet. After the childhood the problems comes out more and more. Persons with disabilities at 10 or 12 are see as little child but they are not and their tender behaviours become socially There are many problems related to entering in the adult age and that is the moment when families stop to have referring point and start to feel abandoned. As sister of a brother with a severe form of disability I have had a lot of frustrations, i am one and my broche is another one, I should have my life it’s my life and I’m sane but it is as if I’ve been always the disappeared member of the family.
Factors improving the quality of life of the family:
I think that creating for all the persons involved the possibility of sharing the problem can be very important, I think that talk about the problems could be important. I think that it’s not easy as sometimes need to stop think about my brother and to start think about my self. I have had many private reflection that I ‘haven’t shared with nobody. I think the role of the brothers and sisters of persons with disabilities is very important within the families. I would like this role to be recognised. We lived really difficult situation at home, many days we are full of stress and dark feelings but we are rarely considered when some choice has to be done. I think that one factor improve the quality of life is not always think about future and to focus the attention on the present breaking the circle of sacrifice and trying to be happy to transmit happiness.
Role of the municipality and useful service:
There should be an agency offering consultancy to the families about what they are doing and about what can be some reasonable objectives to pursue. I would like to have advice about how to deal with my brother, There is a big difficulty in open a discussion on this kind of topic, there is a big silence. Persons with disabilities and their family members are not a minority the problem is that they usually don’t talk to each others. It is in my mind since when I was 15 that the future of this guys will be their brothers or sisters. It will be mine the decision of having him with me at home or put him in some institution. I wont leave my brother in an institution but I want to have the possibility to decide about my future and about the future of my brother. Services should help the families to help them communicate on this level. The parents have had a disable d son but i have had a disabled brother furthermore educated by my parents.
Interview with the mother of a 12 years old boy with mild intellectual disability.
Expectations about the persons with disability:
I’ve no clear expectation about my son. His disability was genetic and since he was born he has been hospitalised too long. Nowadays is very difficult to imagine to separate my self from my son. When I think to the future I hope not to have to put my son in a centre where these guys are parked. I hope to be able to help him become enough autonomous to be able to live on his own. This would be possible of course with the help of his brother as a supervisor.
Factors influencing the quality of life of the families:
The services has influenced our quality of life. In my opinion the rehabilitation centre has stopped to provide therapy too early and my son remained without therapy. Every body think that after ten years old this guys don’t need therapy anymore but I disagree. Their needs change with the time and when they grow up they need to have occupational therapy to become autonomous. If you wait since they are 15 or 16 years old there is the risk of being too late. In this sense our role as parents at home is very important and we are the first that we have to cooperate. It has been hard ,I worked before and then I’ve been fire and I’ve remained with nothing. After that I’ve had a break down with several neurological problems and my mothers came to live with us.
Factors improving the quality of life of the families:
For us It would be important to stimulate my son’s autonomy. It is very hard for us as parents to help on this level. He doesn’t look at us as therapist and we have always to struggle to make him wash him self as an example. If we don’t he would stay at home all day long in pyjamas doing nothing. We have to be hard also to make him leave the bed and we have to use how to say the rod and the carrot. He stay well just in his home he would like to have some friend at home everyday but his friend with the time are going far from his while they are growing up while my sons is remaining like a child. However with a child with disabilities the priorities change as an example yesterday we have had a perfect day: we have been in the park playing and having fun.
Role of the municipalities:
Now we have entered a new project promoted by the local health agency but it is because I move my self and I’ve asked to be involved. The municipalities and the other public agencies don’t come knocking at your door you have always to fight and to make requests not to leave this guys without stimulations. I’ve asked for the home assistance ten years ago and since I have had nothing. I hope that with the time the situation will get better and the municipalities would come closer to us.
Useful services:
I would like to have assistance at home, someone helping me in taking care of my son, substituting me for some hours. I would like to have some services for free and to have an operator giving assistance at home without waiting for years. Also the assistance to the parents is highly needed, it is difficult to learn how to be a parent how to deal with some difficult situation. The assistance should be provided to all the family members including the brothers and sisters that should have the role of supervisor that have to be accepted. We always think about future and the brothers and sisters will have an important role.
Carla
mother of 12 years old boy with mild intellectual disability.Expectations about the persons with disability:
My families comes from the another country and there the expectations are different from here in Italy. Until the boy has born I didn’t know he had problems. The doctors told me rudely that he won’t live long proposing me to leave him in the hospital. In my country I worked as personal assistant of the boy and he went to a private school, financed by a British agency, that I choose to prevent him to be put in special school. Regarding the expectation, the financial benefit are very important. Also the school as been very important, we found delicious persons and I feel that until he go to school we are not forced to think about future. Of course the adolescence is coming and we are starting to think what to do. We will probably make an arrangement with the association for down syndrome as if you are lonely you cannot build nothing you need someone to build something. Regarding the future I think, the boy will remain with us, I’m scared to let him go alone, I cannot see him alone. Maybe we are not ready I always see him as a child. However maybe his autonomy with the time will improve and he will learn to get the bus on his own to cook on his own but I’m scared about this.
Factors influencing the quality of life of the families:
There are many difficulties. As an example it is difficult to have a job and take care of a disabled child. I think is very difficult to have a stable job. He have had a financial benefit but as we are foreigners we have always to renovate it. Bureaucracy is a big problem and also the economic condition of the family are important for a disabled person. As an example we would like to leave him an house to leave him something but it is not easy as it is not easy to earn enough money if just my husband has a full time work.
Factors improving the quality of life of the families.
One good thing for us it is that he is a quite autonomous, quiet and not violent guy. It has been had to teach him to walk or to go to the bath room but we have done it on our own despite in our country the disabled persons are seen as rubbish, something to throw away. On this level we know that it has been important to treat him as a normal child not thinking that he is incapable child and his level of autonomy depend on our way to educate him. However the problems are related to becoming an adult.
The role of the municipalities:
The social worker of the municipalities has been helpful in finding a centre and in getting the benefit for our child. However for us it is very difficult to ask an hand to the municipalities or to ask an hand in general. We are people that integrated our selves trough and are ashamed to ask for an help as for us it is like ask for a charity. As we come from another country we are ashamed to be perceived as a burden for the society and to be stigmatized.
Useful services:
We have emotional difficulties, maybe I need help but I don’t fell confident in venting. We are not used to be helped, we are used to struggle on our own. We haven’t had an easy life. It is very difficult for us to be open with the others, we are afraid to be judged we always need to seem strong. We would need to be helped in facing this fear to be open and to be judged. I would like to learn how to do it.
Donatella
mother of a nine years lady with severe epileptic syndrome.Expectations about the persons with disability:
We would like to have the magic wand but we know that it doesn’t exist. For us it is very difficult to think about future, we simply try to survive day by day. I never have a moment for me during the day since my daughter has born I didn’t go to the cinema once. My son, her brother, is 12 years old but he seems older than 50. When it is a bad day my daughter can have 10 /12 crises in a few hours. During that days since she wake up you must remain attached to the child. From being free we passed to loose everything. We stopped to camping, everything it is closed in basement. Yes maybe the most critic phase has passed but we remain with that sensation of risk. We are worried about the future as she is growing up and the next year the rehabilitation therapies will stop and she will never have any assistance except from the ones that we paid privately.
Factors influencing or improving the quality of life of the family:
The quality of life is not so good as we do not have enough assistance. We are in a savannah. Furthermore there is not just the pathology, each child or each family has also other problems related to the pathologies and for that problems there is not any assistance. As an example as parents we have always to bring her somewhere. The problem is that nobody understand our problems as in the critical moments they aren’t at home. Friends and relatives, except the grandparents, usually disappear when someone need them. . The problem is also that we have another son, the older brother has to remain sane and if you don’t take care of him problems comes out. Recently he had he had angry reaction towards the sister saying that we never go out and asking to let her at home. I had to live my job as i worked in a shop and i always arrived late. Specially in the week end at home it is very difficult. We have been three days closed in our house attached to the daughter. It would be useful for us to have some structure or as an example some gardens prepared to welcome this kind of children where we can met some persons competent in dealing with the epileptic crises, reliable and not scared by them
Role of the Municipalities:
Nobody give information. The local sanitary agency and the municipality aren’t enough prepared and if you ask for something it seems that you are asking a treasure. We need competent professionals within the centres, the hospitals the schools. Her school has been an example of good practice, she found really well with the teachers and the other pupils it is a well prepared environment used to be in touch with persons that can have unexpected behaviours. Unfortunately out of this rare places there are many problems and you live like in a jungle.
Useful services:
I would like to have quiet moment for my self, the possibilities to live for a while without heavy thoughts and burdens. It would be great also to have an help giving me the possibilities not to ask always to my parents, the grandparents of my daughter. I feel it has started a dynamic that make me come back. I ‘have always been free since I was 18 but now I suffer from depending again from my parents. To have this help it is needed for the home assistants to be prepared in facing the epileptic crises and the situation we face everyday. The problem on thin level is that the service providers follow obsolete guidelines and criteria that should be changed.
Loredana
mother of a 50 years old women with mild intellectual disability.Expectations for the person with disability:
My daughter is 50 years old but she seems to have 14. Persons round her grow up, their life change while she seems to be remained a little child. For her future it is very important that her environment will remain stable as when she change place it is a shock for her. Now we are very worried for the future as the probably will change the job that she is doing since 30 years in a kindergarten. She is getting older as me, her leg are suffering, her job its now more heavy than before. We are wondering what to do in case she should change her job, we cannot take her at home all day long.
Factors influencing or improving the quality of life of the families:
Illness compromise the quality of life. My daughter has problems on his necks and I have psoriasis on my hands and feet. In this sense home assistance is very important when someone become older and I think this is not enough considered by the care service providers. With the time passing my daughter will need more and more help to manage the financial issues as she is incapable of doing on her own. We really don’t know who can help her. We need someone honest and secure because you can’t trust everyone entering you home. Maybe someone could steal all her money. This is my main worry: Who we may ask for being supported? Unfortunately I know that the society is full of not unreliable persons and I’m sure that when I will die my nephew will take all the money for them self. I don’t want her to live in a group home, i want her to live in the home I bought for her with the money i earned with my job.
Role of the local authorities:
We don’t have a good relationship with the Municipality. My daughter is starting to have physical problems that are not recognised by the municipality. In the next few days we will have a meeting with a commission that has to decide for her to be pensioned or to be transferred to another job. To decide her to be transferred means to kill her. For this reason we have stopped to sleep in the night, we would like to make some plants for the future but we don’t see nobody that can help up.
Useful services:
We would need some meeting at home to teach my daughter some things, to teach her maths but it would need a trusted person. The point is that curing her from a medical point of view is not a problem but we need someone helping her in learning to count. It is not a severe case it is just needed to work for anticipating the moment I will die. My daughter is the properties on many things but she is incapable to manage them and to spend some time with her. I won’t her at home watching TV all day long I would like also to have some centre that she can attend one or twice a week.
