1) Inerview with the mother of 35 years old son Paulius. Made on June 05, 2014
Who / what institution / helped you with advice, or provided the necessary support?This year Paulius will be 35. Diagnosis of Paulius: blind autism, rubella syndrome, total disability, he does not speak and needs care 24 hours a day. When Paulius was born the doctors and the family helped most of all. The doctors helped their professional advice, as specialists. At those times there were no so many professionals specialized in such type of disability. But the doctors could found the way of help to the Mother of Paulius, first of all it was human support. During soviet times children were divided to organized and non-organized. Paulius belonged to the non-organized children, therefore Dana was offered to give him to the institution. But thanks to the support of the family and the doctors Dana took her decision to take care of her son by herself, not to give him to the closed institution. Nowadays it is much easier, because a lot has been done during the years of Lithuanian independence: there are many professional doctors able to help disable persons and parents, they specialize in definite fields of disability.
The future of my son is a real problem. He needs constant special care – he is blind, he has weak chest, he is often sick, needs special mashed food. There are no proper, high quality services for him, we need new services. Now we have good health system in the country, professional doctors, good day care centre he attends. There are no so many persons as Paulius, who has severe complex disability. My family and relatives support me in my life, but I do not know what happens when I won’t be able to look after him. The people as Paulius need a personal assistant, professional and well trained. Unfortunately the help from Social welfare department is just on papers; they come to visit us once a year just to sign some papers.
What type of service does your child or you need most of all, what kind of help would you like to get?
Parents are almost always with their disabled children, they spend holidays, they do not have time for ourselves–go to the theatre, or to the barber’s shop, etc. We need temporary respite care services; it would be possible to leave our children for some hours, days or weeks with trained social workers, who will be responsible for our children. Such persons as Paulius, other persons with severe complex disability need personal assistant. His/her services should be financed by municipality. Parents are getting older, they often need physical help, the children are tired to be always with parents, they need to have their peers close to them. Personal assistant could be such a person - not only for taking care but for communication too.
How can the community help your family and how did they help already?
Community – the place where we live is very well arranged Our neighbors know who is Paulius and how to behave with him. If I leave him for some time in the yard and ask some of my neighbors to look after him, they know what to do, how to communicate with Paulius. There is one more family in our yard growing disabled childwith Down syndrome. One more family growing an autist boy has moved to our house. The neighbours know their “otherness” and understand them. When we visit the shop close to our hose, the sellers always offer a chair for Paulius. All of us are learning from each other and from our children how to behave and communicate. It is a long-lasting process of learning each other.
How do you imagine the future of your child? What would you like to change?
I repeat the words I told recently - I would like to live 150 years to bury my son. It sounds too severe, but it is true. He cannot live without good qualified care. First of all he needs security and professionalism of people who surround him. It is difficult to imagine if somebody else except me would be able to take proper care of my son.
What do you think about this project –could it be useful for parents of children with disabilities? (Young people with intellectual disabilities: The European Learning Partnership for a new approach to life). How do you think what kind of project children / people with disability need most of all.The project is very useful. The question of mothers growing children with disabilities is the same – why, what for my child is a disabled one? This question the mothers ask wherever they are from – Sweden, Africa, Lithuania, Spain or UK, etc. We can state that there are states which went a long-long way to arrange a favorable system for the life of disabled persons and their parents. We saw such examples. We need to exchange practices, to share opinions between each other. It is important that parents, specialists can sit over one table and not only talks about problems of disabled persons, but to look for ways of solving their problems. To my mind the next step could be a talk with disabled persons. It is necessary to invite them for discussions, because they know their problems, their needs and wishes best of all. We need to communicate, we need to talk to each other and learn each other better. Exchange of experience can bring good results. Sometimes we look for doors to help us, but we do not notice that the door is close to us. Let’s be more attentive and try to open the right door.
2) Interview with a mother of a 33 years old son. Date: 23-12-2014
How can the community help your family and how did they help already?
Community – the place where we live is very well arranged Our neighbors know who is Paulius and how to behave with him. If I leave him for some time in the yard and ask some of my neighbors to look after him, they know what to do, how to communicate with Paulius. There is one more family in our yard growing disabled childwith Down syndrome. One more family growing an autist boy has moved to our house. The neighbours know their “otherness” and understand them. When we visit the shop close to our hose, the sellers always offer a chair for Paulius. All of us are learning from each other and from our children how to behave and communicate. It is a long-lasting process of learning each other.
How do you imagine the future of your child? What would you like to change?
I repeat the words I told recently - I would like to live 150 years to bury my son. It sounds too severe, but it is true. He cannot live without good qualified care. First of all he needs security and professionalism of people who surround him. It is difficult to imagine if somebody else except me would be able to take proper care of my son.
What do you think about this project –could it be useful for parents of children with disabilities? (Young people with intellectual disabilities: The European Learning Partnership for a new approach to life). How do you think what kind of project children / people with disability need most of all.The project is very useful. The question of mothers growing children with disabilities is the same – why, what for my child is a disabled one? This question the mothers ask wherever they are from – Sweden, Africa, Lithuania, Spain or UK, etc. We can state that there are states which went a long-long way to arrange a favorable system for the life of disabled persons and their parents. We saw such examples. We need to exchange practices, to share opinions between each other. It is important that parents, specialists can sit over one table and not only talks about problems of disabled persons, but to look for ways of solving their problems. To my mind the next step could be a talk with disabled persons. It is necessary to invite them for discussions, because they know their problems, their needs and wishes best of all. We need to communicate, we need to talk to each other and learn each other better. Exchange of experience can bring good results. Sometimes we look for doors to help us, but we do not notice that the door is close to us. Let’s be more attentive and try to open the right door.
2) Interview with a mother of a 33 years old son. Date: 23-12-2014
The family – mother and a son - lives in Vilnius. The son attends day employment centre in Vilnius. I took the interview at her home. It was agreed about the interview beforehand.
What are your expectations / ambitions for your son’s life? Are they changing during the time?Mother of a 33 year old young man is pensioner. She is raising her son alone, without father. The son is ill from the childhood – mental retardation with signs of autism and schizophrenia. It was difficult for her to talk about her son’s expectations as the family got used to the life they live now. The son attends day employment centre since 21 years old. He attended educational centre for persons with disability before. Yarek attends the centre 3 times a week. It is difficult for him to go there more often because of early transportation. The bus comes to pick him up at 6-30 and it is a problem for him to get up so early; moreover Yarek likes to be at home with his mother. He helps her about the house – he performs simple work. So they decided to go to the centre 3 times per week. Mother says it is convenient for her too. She has some free days when she can go to the shop, to the policlinic or to do her other business. Yarek has time to be at home and communicate with his friends in the centre. Expectations – mother says that at present she is quite satisfied with the life they live in spite of difficulties. She knows about health problems of her son. Unfortunately as Yarek matures, epilepsy attacks are becoming more frequent and she has to call the ambulance rather frequently.
What factors influenced improvement of quality of life of your family?
Mother says it was better for her and Yarek when he attended the educational centre for disabled person. The centre was close to their house and they walked to this centre. It was not necessary for Yarek to get up so early. Before a couple of years mother got licences and bought a car. It improved significantly the life of the family– now she can go to the shop to buy products alone or with Yarek. She can do it more quickly as before and Yarek likes to go together with her. He can go to the shop and choose what he likes; he helps Mother to bring products to/from the car. Yarek had a possibility to go to the day employment centre together with his friends from educational centre. It helped them to better adaptation to new conditions and new social workers and assistants.
What kind of information would you like to have from your local government about services for people who have disabilities and their parents?
Yarek’s mother says she gets information from the centre, parents of disabled persons who attend the same centre, magazine “Viltis” and her relatives. She did not get information from the municipality; only once representative of social service visited her at home and inspected the conditions they live in. It would be good to get a sanatorium treatment, but it costs very expensive. Usually the family goes for summer holidays to “Pajurio Akimirka” resort on the Baltic sea-shore. They are satisfied with the conditions and the atmosphere in this resort.
What services do you think can be useful for you as a parent?
Mother says that it would be good to get some services at home – for 2-3 hours. Her son is a grown up man and it is difficult for her physically to do some things (for ex. to bathe him). Sometimes she would like to visit her friends, relatives and she does not have a possibility to leave him with. It is difficult for her to cope with Yarek alone during attacks - he is a grown up physically strong young man. It would be good to have some help of assistants who render support at home. In case of some difficult situations (go to the hospital for some days, or go somewhere) it would be good if some social worker could stay with him for several days. She knows about the respite care service centre which started to function in Vilnius not long ago. It is necessary to collect all documents to have a possibility to use this service. Mother intends to do it as this service is highly necessary.
The interview took place in the office.
Respondent: Irena, mother of 13 years old girl Saule, who has Down syndrome.
Who / what institution / helped you in your further advice, or provided the necessary support?
Irena has 2 grown-up sons and a 13-year old girl Saule. As almost all parents the Mother loves her child; but it happened that Irena’s husband divorced her when he knew about the child’s disability. When Saule was a small girl, Irena did not feel real help form institutions. She visited policlinic and one of the therapists told her that task is just to be a mother to her child and she tried and tries to follow this advice till now. It was difficult to understand and get used to the thought that your child is disabled. At this time you need some people around who can understand you, talk to you - moral support is of high importance in this case. Irena got acquainted with a woman Sinti, growing a child with disability (of 3 yrs. old). She invited Irena to her home, they started to communicate; Sinti shared with her experience she already had growing a disabled son. Sinti’s experience, cordiality, discussions were the best help and support for Irene. It is important not to be alone, to be between people who do not reprove or judge you in this difficult moment, between people who can help you to look on your situation from the other side and show that the life is beautiful. In genetics centre they gave her several brochures about Down syndrome, society “Viltis”, but she was sure that none of institutions could help her. Frank and cordial conversation with physician geneticist helped her more than booklets. Once again Irena underlined this thought.
What are the major problems to this day? How do you solve them, who / what institution / community helps you most of all?
The most difficult and important problems are: lack of time and lack of finance. Irena gets benefits from the state, but it is not enough for her family, therefore she tries to work at several places. It gives some extra money to her family budget, but she has less time to be together with her daughter. Irena says that mothers, especially those who grow children with disabilities, need to have some free time for themselves – to go to the therapist, to deal with personal documents, etc. When you work at several places it is impossible to find time for this. It is good that they can take 1 day off per month; however it is not a way out. Saule’s health (as most children with disabilities) is not very strong; therefore Irena has sometimes to ask for leave from work. She cannot do it constantly. In this case she asks for her friends, neighbors to help her. Irena has a lot of friends, she participates in the life of community, but due to lack of time it becomes a luxury. Her daughter Saule has even more friends than Irene and she is proud of that. Friendly communication is irreplaceable.
What type of service do you / your child need most of all, what kind of help would you like to get?
Respite care service (RCS) could be of great help; there should be a possibility to leave her daughter with the staff from RCS for several hours at her own home when she needs. The staff personnel who would come to their home should be trained, able to work with disabled people. A club for disabled people is much needed – it should be a place where they can come when they want. She remembers the story about Eldorado centre in Sweden. Here the persons with disabilities, their parents could feel themselves liberated, communicate, play games, arrange some parties, for example, birthdays etc. It should be done with the help of municipality and supported by the state. A dream is a swimming-pool for disabled persons – exercises are very important for disabled persons, however not all of them can visit swimming-pools for healthy people, because special equipment is needed. It should be also done with the help of municipality and supported by the state. Education – Saule attends educational class at school, assistant helps her to study. Irene wants her daughter to have textbooks of better quality, colorful, interesting for a pupil. Now Saule uses black and white textbooks, usually copied on Xerox machine. It is difficult to make her interested in subject with such text-books. Even title of subjects is rather difficult for children to understand and remember. Saule attend music lessons; she is capable in music. Irene pays for the lessons by herself. Teachers of music, other circles for disabled persons should be prepared in Pedagogical universities or colleges as they need special training.
How can the community help your family and how did they help already? Irene is an active member of Community. However because of lack of time she cannot often visit the meetings or festive events arranged by the Community. People from the Community are open hearted and friendly. It positively influenced her moral conditions. It helped to understand Irene is not alone, life is difficult but at the same time it is beautiful and full of kind people. Communication and a desire to be together, to talk to each other, to participate in mutual events make the life more colorful and interesting.
How do you imagine the future of your child? What would you like to change?
Irene wants a happy future for her daughter.
The Mother wants her daughter to enter some college in future, where she could learn how to grow plants, flowers. Saule could be a good specialist in this field.
The ministry of education should pay more attention to methods of education of disabled persons; there are a lot of new methodic, findings which could be used in education of children with Down syndrome.
What do you think about this project –could it be useful for parents of children with disabilities? (Young people with intellectual disabilities: The European Learning Partnership for a new approach to life).
It is good that you are interested in the problems of parents growing children with disabilities. I hope that it will help to make some positive changes in our life. When you know the problems, you know which direction you should work.
During growing period Yurate’s behaviour, her needs began to change; it was more difficult to understand what she was trying to say by her look, or by gesture, of her hand, or her touch (Yurate does not speak). She began to be interested in other things: for example, knives, forks, scissors and so on. It is always necessary to watch out and not to leave such items in an easily accessible place. It is very convenient that my sister lives very close to us, on the other side of the street, and, if necessary, we can leave Yurate with her. But if my sister could not take care of her or live somewhere further, it would be a great problem, as I would not leave the daughter with anybody else just because of her own security. She often has unexpected bouts (epilepsy) with a sudden falls, therefore a person who doesn’t know her could not stay with her and protect her.
Use of the project
If there are no problems with the language barrier, it would be very helpful to talk with other people (who are faced with similar problems) from Europe, to share information, experiences, compare similarities and so on.
The main problems today
The biggest problem today is drug selection for Yurate, because every 2-3 years epilepsy bouts become more frequent; the body's tolerance to drugs appears, therefore it is very difficult to choose new drugs that would come up and help like the previous ones.
Another challenge we face to is the lack of special education. Some time ago we ( with my wife ) could not find the correct direction of education (as per what direction, ways , methods, etc. ) which should focus on, this is why we could not ask anybody who would work out with her, as we did not know what we can offer. Now we devote a lot of time to augmenting and alternative communication with her and I am going to devote more time for it in the future. All basic information we need we learn from communication with other people, not from some official representatives. Also we get lots of information from the magazine "Viltis" issued by Lithuanian welfare society for persons with mental disability “Viltis”.
The lack of services
It would be great if we could leave Yurate in the Day Care Centre several times per month for few hours after work or longer in exceptional circumstances (extra cases, funerals, etc.) or for the whole day.
Training of communication skills with various professionals after working hours is highly required.
This problem is soling now, but it is still far from over. One example we’d like to mention: a disabled man like me gets 1.5 pampers per day free of charge - What do you think about the attitude of the government to this fact?
Transport for the disabled - I say this from my experience. Laura fell ill, we called the ambulance and asked to transport the girl to the hospital; I was asked to pay 160 Lt. For what? Maybe I did not formulate my request properly, but it was a mockery. Another example: if you want to call the taxi for disabled person, social taxi, you need to book it advance, it can come in a week, a month, as there are only two such taxis.
What are your expectations / ambitions for your son’s life? Are they changing during the time?
We do not have big ambitions, as the son working capacity is 20%, but we would like our son to have such activity (both now and in the future ) that would be interested for him and help to self-development. The first example coming to mind - like listening to music, could choose what kind of music he wants to listen to, turn on - turn off radio, put discs in place. I would like him not to lose even small self-independent skills, physical activity is also very important, especially for his health.
Over time, expectations are not changing too much, or even decreasing – it is because of the age of as with his general health.
What factors influenced improvement of quality of life of your family? When my son started attending the training center (at the age of 10 yrs. Old), there appeared more opportunities to focus on the whole family and myself personally.
It is true, that there was slightly more tension, because we had to comply with the regime, regardless of how good the son slept at night. With the age not much has changed, his emotional state got only worse, therefore now it is a bit more difficult, but changing of surroundings and activities is good for him.
What kind of information would you like to have from your local government about services for people who have disabilities and their parents?
I would like to learn more about sanatorium treatment options (maybe there is are some privelleges, or discounts, if any) for adult people with disabilities, but probably it is not the responsibility of authorities.
What services do you think can be useful for you as a parent?
We prefer short-term care services – for a few hours at home and for several days in the centre, but it is very important not to require a big volume of advanced paperwork. It would be ideal to get more flexible transport services than we gat now.
What factors influenced improvement of quality of life of your family?
Mother says it was better for her and Yarek when he attended the educational centre for disabled person. The centre was close to their house and they walked to this centre. It was not necessary for Yarek to get up so early. Before a couple of years mother got licences and bought a car. It improved significantly the life of the family– now she can go to the shop to buy products alone or with Yarek. She can do it more quickly as before and Yarek likes to go together with her. He can go to the shop and choose what he likes; he helps Mother to bring products to/from the car. Yarek had a possibility to go to the day employment centre together with his friends from educational centre. It helped them to better adaptation to new conditions and new social workers and assistants.
What kind of information would you like to have from your local government about services for people who have disabilities and their parents?
Yarek’s mother says she gets information from the centre, parents of disabled persons who attend the same centre, magazine “Viltis” and her relatives. She did not get information from the municipality; only once representative of social service visited her at home and inspected the conditions they live in. It would be good to get a sanatorium treatment, but it costs very expensive. Usually the family goes for summer holidays to “Pajurio Akimirka” resort on the Baltic sea-shore. They are satisfied with the conditions and the atmosphere in this resort.
What services do you think can be useful for you as a parent?
Mother says that it would be good to get some services at home – for 2-3 hours. Her son is a grown up man and it is difficult for her physically to do some things (for ex. to bathe him). Sometimes she would like to visit her friends, relatives and she does not have a possibility to leave him with. It is difficult for her to cope with Yarek alone during attacks - he is a grown up physically strong young man. It would be good to have some help of assistants who render support at home. In case of some difficult situations (go to the hospital for some days, or go somewhere) it would be good if some social worker could stay with him for several days. She knows about the respite care service centre which started to function in Vilnius not long ago. It is necessary to collect all documents to have a possibility to use this service. Mother intends to do it as this service is highly necessary.
3) Interview made with a mother of a young 30 year old fellow. Diagnosis: autism, mental retardation
What are your expectations / ambitions for your son’s life? Are they changing during the time?
I wish my son is ensured to have a normal life at care institution when the parents die.
What factors influenced improvement of quality of life of your family? When my son started to go attend day care centre, i ofund more time for work, home and for myself.
What kind of information would you like to have from your local government about services for people who have disabilities and their parents?
We get all required information from society „Viltis“
What services do you think can be useful for you as a parent?We need more services at home.
What factors influenced improvement of quality of life of your family? When my son started to go attend day care centre, i ofund more time for work, home and for myself.
What kind of information would you like to have from your local government about services for people who have disabilities and their parents?
We get all required information from society „Viltis“
What services do you think can be useful for you as a parent?We need more services at home.
4) Interviews with parents. Questions
Date of interview: 02-06-2014The interview took place in the office.
Respondent: Irena, mother of 13 years old girl Saule, who has Down syndrome.
Who / what institution / helped you in your further advice, or provided the necessary support?
Irena has 2 grown-up sons and a 13-year old girl Saule. As almost all parents the Mother loves her child; but it happened that Irena’s husband divorced her when he knew about the child’s disability. When Saule was a small girl, Irena did not feel real help form institutions. She visited policlinic and one of the therapists told her that task is just to be a mother to her child and she tried and tries to follow this advice till now. It was difficult to understand and get used to the thought that your child is disabled. At this time you need some people around who can understand you, talk to you - moral support is of high importance in this case. Irena got acquainted with a woman Sinti, growing a child with disability (of 3 yrs. old). She invited Irena to her home, they started to communicate; Sinti shared with her experience she already had growing a disabled son. Sinti’s experience, cordiality, discussions were the best help and support for Irene. It is important not to be alone, to be between people who do not reprove or judge you in this difficult moment, between people who can help you to look on your situation from the other side and show that the life is beautiful. In genetics centre they gave her several brochures about Down syndrome, society “Viltis”, but she was sure that none of institutions could help her. Frank and cordial conversation with physician geneticist helped her more than booklets. Once again Irena underlined this thought.
What are the major problems to this day? How do you solve them, who / what institution / community helps you most of all?
The most difficult and important problems are: lack of time and lack of finance. Irena gets benefits from the state, but it is not enough for her family, therefore she tries to work at several places. It gives some extra money to her family budget, but she has less time to be together with her daughter. Irena says that mothers, especially those who grow children with disabilities, need to have some free time for themselves – to go to the therapist, to deal with personal documents, etc. When you work at several places it is impossible to find time for this. It is good that they can take 1 day off per month; however it is not a way out. Saule’s health (as most children with disabilities) is not very strong; therefore Irena has sometimes to ask for leave from work. She cannot do it constantly. In this case she asks for her friends, neighbors to help her. Irena has a lot of friends, she participates in the life of community, but due to lack of time it becomes a luxury. Her daughter Saule has even more friends than Irene and she is proud of that. Friendly communication is irreplaceable.
What type of service do you / your child need most of all, what kind of help would you like to get?
Respite care service (RCS) could be of great help; there should be a possibility to leave her daughter with the staff from RCS for several hours at her own home when she needs. The staff personnel who would come to their home should be trained, able to work with disabled people. A club for disabled people is much needed – it should be a place where they can come when they want. She remembers the story about Eldorado centre in Sweden. Here the persons with disabilities, their parents could feel themselves liberated, communicate, play games, arrange some parties, for example, birthdays etc. It should be done with the help of municipality and supported by the state. A dream is a swimming-pool for disabled persons – exercises are very important for disabled persons, however not all of them can visit swimming-pools for healthy people, because special equipment is needed. It should be also done with the help of municipality and supported by the state. Education – Saule attends educational class at school, assistant helps her to study. Irene wants her daughter to have textbooks of better quality, colorful, interesting for a pupil. Now Saule uses black and white textbooks, usually copied on Xerox machine. It is difficult to make her interested in subject with such text-books. Even title of subjects is rather difficult for children to understand and remember. Saule attend music lessons; she is capable in music. Irene pays for the lessons by herself. Teachers of music, other circles for disabled persons should be prepared in Pedagogical universities or colleges as they need special training.
How can the community help your family and how did they help already? Irene is an active member of Community. However because of lack of time she cannot often visit the meetings or festive events arranged by the Community. People from the Community are open hearted and friendly. It positively influenced her moral conditions. It helped to understand Irene is not alone, life is difficult but at the same time it is beautiful and full of kind people. Communication and a desire to be together, to talk to each other, to participate in mutual events make the life more colorful and interesting.
How do you imagine the future of your child? What would you like to change?
Irene wants a happy future for her daughter.
The Mother wants her daughter to enter some college in future, where she could learn how to grow plants, flowers. Saule could be a good specialist in this field.
The ministry of education should pay more attention to methods of education of disabled persons; there are a lot of new methodic, findings which could be used in education of children with Down syndrome.
What do you think about this project –could it be useful for parents of children with disabilities? (Young people with intellectual disabilities: The European Learning Partnership for a new approach to life).
It is good that you are interested in the problems of parents growing children with disabilities. I hope that it will help to make some positive changes in our life. When you know the problems, you know which direction you should work.
5)Yurate Ž. was born in 1984. The diagnosis is symptomatic epilepsy with focal and generalized frequent bouts, Tuberous sclerosis and Mental retardation.
Main problemsDuring growing period Yurate’s behaviour, her needs began to change; it was more difficult to understand what she was trying to say by her look, or by gesture, of her hand, or her touch (Yurate does not speak). She began to be interested in other things: for example, knives, forks, scissors and so on. It is always necessary to watch out and not to leave such items in an easily accessible place. It is very convenient that my sister lives very close to us, on the other side of the street, and, if necessary, we can leave Yurate with her. But if my sister could not take care of her or live somewhere further, it would be a great problem, as I would not leave the daughter with anybody else just because of her own security. She often has unexpected bouts (epilepsy) with a sudden falls, therefore a person who doesn’t know her could not stay with her and protect her.
Use of the project
If there are no problems with the language barrier, it would be very helpful to talk with other people (who are faced with similar problems) from Europe, to share information, experiences, compare similarities and so on.
The main problems today
The biggest problem today is drug selection for Yurate, because every 2-3 years epilepsy bouts become more frequent; the body's tolerance to drugs appears, therefore it is very difficult to choose new drugs that would come up and help like the previous ones.
Another challenge we face to is the lack of special education. Some time ago we ( with my wife ) could not find the correct direction of education (as per what direction, ways , methods, etc. ) which should focus on, this is why we could not ask anybody who would work out with her, as we did not know what we can offer. Now we devote a lot of time to augmenting and alternative communication with her and I am going to devote more time for it in the future. All basic information we need we learn from communication with other people, not from some official representatives. Also we get lots of information from the magazine "Viltis" issued by Lithuanian welfare society for persons with mental disability “Viltis”.
The lack of services
It would be great if we could leave Yurate in the Day Care Centre several times per month for few hours after work or longer in exceptional circumstances (extra cases, funerals, etc.) or for the whole day.
Training of communication skills with various professionals after working hours is highly required.
6) Laura K., born in 1984. Diagnosis - cerebral palsy, spastic tetraplegia. Total disability.
Problems. We are dealing with a number of problems, of course it is impossible to list all of them. Everywhere it is said: integration into society, but Lithuania will rarely see a disabled person in the street, or in the shop. Why? How to enter the shop with a big wheel chair if there are no ramps and lift.This problem is soling now, but it is still far from over. One example we’d like to mention: a disabled man like me gets 1.5 pampers per day free of charge - What do you think about the attitude of the government to this fact?
Transport for the disabled - I say this from my experience. Laura fell ill, we called the ambulance and asked to transport the girl to the hospital; I was asked to pay 160 Lt. For what? Maybe I did not formulate my request properly, but it was a mockery. Another example: if you want to call the taxi for disabled person, social taxi, you need to book it advance, it can come in a week, a month, as there are only two such taxis.
Medication is also a big problem. Our daughter is suffering from serious Spastik; every day eha has to take relaxing pills "Baclofen, but it is not compensated, even though the law provides that all medicines connected with this diagnosis must be compensated.
Parking - You can park your car in a parking space free of charge not in all municipalities, although we have the sign for parking for disabled persons. In Kaunas we were fined for it, we had to apply to the Ombudsmen's Office, but the fine has already been paid.
Medical treatment – You take a disabled person to the hospital, he / she has a bed in 6-place room, medications, treatments; his/her mother gets just a chair on which she has to stay all the night and day.
Only the God can answer the question whether we are able to solve all the problems by themselves. Only he sees that it is impossible. On February 22 i read an article under the title of the article "Day and night - without a minute of respite”. in a newspaper „Lietuvos rytas“. "Day and night - without a minute of respite”. The words of the head of association “Viltis” Dana Migaliova stuck me deep in the heart: "I'm worried what happens, one day i go away? I am sure, if my son appears in social care system, he will die very soon.”
All of us are worried. These are golden words, all of us understand that without the support of parents, such persons as our children are condemned.
Who / what body helped with an advice or real help you needed?
In particular, it is difficult to clearly answer to this question, because nobody cares cares how you cope with your problem. You get benefits, you get pampers and it is enough. I can tell a good word about our municipality, as thanks to “a good uncle " we managed to get some to get a better wheelchair for a disabled person. More over it was equipped with a lifter to ease our life. In general, i get most help from other persons – not physical, but moral. I am grateful to the director of Birstonas sanatorium “Versmė”, who opened our eyes to the real world many years ago. We are thankful to Palanga “Linas” owner, who treats our child as a full-fledged person of society.
The lack of services. Life does not stand still, all of us are going into the second half of our life, but services are not enough. For example - Laura's dad got sick, there is nobody who can help, and I alone lifted her into the wheel-chair, carried to the toilet, bathroom, etc. It would be nice to cal somebody and ask for help. Temporary respite care services are arranged in many countries of the world; why Lithuania cannot follow these examples?
My proposal to our Day care centre Laura attends: to arrange one room as a bed-room where a person with disability could stay during 1-3 days. After all there are weddings, funerals, other important events in the life of parents. The hands of parents are tied up. Of course now we are going with Laura everywhere, however it cannot last for the whole of life.
Future: Unfortunately the future is bleak, it is better not to talk about it.
Parking - You can park your car in a parking space free of charge not in all municipalities, although we have the sign for parking for disabled persons. In Kaunas we were fined for it, we had to apply to the Ombudsmen's Office, but the fine has already been paid.
Medical treatment – You take a disabled person to the hospital, he / she has a bed in 6-place room, medications, treatments; his/her mother gets just a chair on which she has to stay all the night and day.
Only the God can answer the question whether we are able to solve all the problems by themselves. Only he sees that it is impossible. On February 22 i read an article under the title of the article "Day and night - without a minute of respite”. in a newspaper „Lietuvos rytas“. "Day and night - without a minute of respite”. The words of the head of association “Viltis” Dana Migaliova stuck me deep in the heart: "I'm worried what happens, one day i go away? I am sure, if my son appears in social care system, he will die very soon.”
All of us are worried. These are golden words, all of us understand that without the support of parents, such persons as our children are condemned.
Who / what body helped with an advice or real help you needed?
In particular, it is difficult to clearly answer to this question, because nobody cares cares how you cope with your problem. You get benefits, you get pampers and it is enough. I can tell a good word about our municipality, as thanks to “a good uncle " we managed to get some to get a better wheelchair for a disabled person. More over it was equipped with a lifter to ease our life. In general, i get most help from other persons – not physical, but moral. I am grateful to the director of Birstonas sanatorium “Versmė”, who opened our eyes to the real world many years ago. We are thankful to Palanga “Linas” owner, who treats our child as a full-fledged person of society.
The lack of services. Life does not stand still, all of us are going into the second half of our life, but services are not enough. For example - Laura's dad got sick, there is nobody who can help, and I alone lifted her into the wheel-chair, carried to the toilet, bathroom, etc. It would be nice to cal somebody and ask for help. Temporary respite care services are arranged in many countries of the world; why Lithuania cannot follow these examples?
My proposal to our Day care centre Laura attends: to arrange one room as a bed-room where a person with disability could stay during 1-3 days. After all there are weddings, funerals, other important events in the life of parents. The hands of parents are tied up. Of course now we are going with Laura everywhere, however it cannot last for the whole of life.
Future: Unfortunately the future is bleak, it is better not to talk about it.
7) Interview is made with a mother of 27 year old young man. Diagnosis: cerebral paralysis, mental retardation, myopija
What are your expectations / ambitions for your son’s life? Are they changing during the time?
We do not have big ambitions, as the son working capacity is 20%, but we would like our son to have such activity (both now and in the future ) that would be interested for him and help to self-development. The first example coming to mind - like listening to music, could choose what kind of music he wants to listen to, turn on - turn off radio, put discs in place. I would like him not to lose even small self-independent skills, physical activity is also very important, especially for his health.
Over time, expectations are not changing too much, or even decreasing – it is because of the age of as with his general health.
What factors influenced improvement of quality of life of your family? When my son started attending the training center (at the age of 10 yrs. Old), there appeared more opportunities to focus on the whole family and myself personally.
It is true, that there was slightly more tension, because we had to comply with the regime, regardless of how good the son slept at night. With the age not much has changed, his emotional state got only worse, therefore now it is a bit more difficult, but changing of surroundings and activities is good for him.
What kind of information would you like to have from your local government about services for people who have disabilities and their parents?
I would like to learn more about sanatorium treatment options (maybe there is are some privelleges, or discounts, if any) for adult people with disabilities, but probably it is not the responsibility of authorities.
What services do you think can be useful for you as a parent?
We prefer short-term care services – for a few hours at home and for several days in the centre, but it is very important not to require a big volume of advanced paperwork. It would be ideal to get more flexible transport services than we gat now.
8) A.and R. Tol.
What are the problems you have encounttered?When Camille was 3 years old it was very difficult to find an institution Camille could attend, because we are both working, we could not stay at home with the baby.
At that time, Camille’s grandmother helped a lot as she stayed with Camille up to 6 years old. At age 6 Camille with her twin sister started attending pre-school preparatory class, and then - the first class. At school, there appeared a problem with transport, as she sat in a wheelchair and the distance to the house was very short. Except this, there was a lack of professionals at school, who were able to work with disabled children; therefore Camille was left without activity and employment. These were two huge problems we have faced until Camille reached18 years. It is already 20 years as we are members of Lithuanian welfare society for persons with disability “Viltis”. We have close contacts with its members. When Camille was 18 years she began attending the day care center " Vilties Akimirka” (the moment of hope), and these 2 problems have been solved
The problems we face today.
At present the biggest problem is to find a person who could stay with Camille in the evenings or on weekends, when we must or want to go out together with my husband. Also in case of sickness we do not have anybody to leave Camille with, somebody should always stay with her. Another problem is psychological problem. Camille understands that she is a disabled person, she anxiously wants to walk, she is worried about it too much, so it is very difficult for us too.
Do you think that this project could help you? I think it could help.
We want some help and when you know that somehow tries to help you to solve your problems it is really good; it gives the perspective that you are not alone and probably they can really help to solve your problems. Yet we want living a Full Life and we want to give more to Camille, and to ourselves, that the life would not be just work and home.
The lack of services.
I would like a person with special pedagogical education come to us on weekends in the afternoon hours, in the evenings and take care of Camille; as she tends to draw, and cut, and tries to write. Another thing is the lack of information. I cannot find it in the internet, we do not get this information from official sources, just from friends and familiar people. It is necessary to get information about new laws which are relevant for us. It is difficult for Camille as psychologically as physically to go to the Day Care Centre 5 working days; it is highly required a person able to come to us and spend the entire working day with Camille in the middle of the week until we get back from work.
I would like a person with special pedagogical education come to us on weekends in the afternoon hours, in the evenings and take care of Camille; as she tends to draw, and cut, and tries to write. Another thing is the lack of information. I cannot find it in the internet, we do not get this information from official sources, just from friends and familiar people. It is necessary to get information about new laws which are relevant for us. It is difficult for Camille as psychologically as physically to go to the Day Care Centre 5 working days; it is highly required a person able to come to us and spend the entire working day with Camille in the middle of the week until we get back from work.
9) Interview made with a mother of 32 year old young man. Diagnosis: child cerebral paralysis
What are your expectations / ambitions for your son’s life? Are they changing during the time?
I would like my son son have an opportunity to improve his mental and physical health. He's like a vessel – you have just what you have put inside. Very important Physical excercises are very important, work of methodist. Unfortunately i do not have any ambitions ....
What factors influenced improvement of quality of life of your family?
The life has remarkably improved after openning of employment centers. Both for me and my son. He finds cordial and willing to help employees, he communicates, celebrates events, they are trained here .....
What kind of information would you like to have from your local government about services for people who have disabilities and their parents?
It seems to me that information about the services hardly reaches parents. Maybe it would be good to arrange a general information phone number, that could give full information, Instead of having to call to a number of institutions.
In your opinion, what services might be useful to you as parents?
A service comes to your home. It would reduce beaurocracy , no need to collect numerous certificates, on medical equipment or services of the centre. It is difficult to order orthopedic footwear. And yet, now services of centres are oriented to ceate opportunity for parents to work, but that's not just the work a person lives for. And we want to get out to the theater, to celebrate some events with friends, to travel, to learn other languages, improve computer skills.
10) Interview is made with a mother of a son . Date : 2015-01-14
What are your expectations / ambitions for your son’s life?
My expectations have reduced in comparison with the start. Now it is most important for us to teach our son to take care of himself, to have as few supporters as possible in order to he could learn to live alone ( just alone - it is not realistic). My expectation is that my son could learn how to work, any kind of work.
What factors influenced improvement of quality of life of your family?
Guality of life of my family has changed a lot after birth of a disaibled child. He has born with a congenital heart desease. But he got a disaiblity just after 2 years of birth. The realtions in the falimy between family members have also changed. Our status as a status of parents willing to make a carreer has also changed - success in work was not so important.
What kind of information would you like to have from your local government about services for people who have disabilities and their parents?I do not know. Probably some stability, some guarantees. However nobody can ensure it.
What services do you think can be useful for you as a parent?
Advice of specialists (psychologists, special pedagogues, etc.) To have a kind of a house ( respite care service), where we could leave our children though for some time - for 1 day or 2, or 1 time per 3 months. We aslo need an advice for professional orientation, lega consultation. Foe example, how to enter the sanatorium ( as we have not been there yet). It is importnat that all information referring disabled persons is published in 1 edition - ehre to gethelp, where to go to school, where to wrok, etc.
11) Interview with a mother of a daughter Date: 27-11-2014
What are your expectations / ambitions for your son’s life? Are they changing during the time?When my daughetr started to attend a small school , i as a mother found a hope because my daughter went to this school with a great wish. Beforehand i thought that it will be very difficult for her to grow without my help. But now i see that she gets professional support and everything is changing step by step.
What factors influenced improvement of quality of life of your family?
No answer
What kind of information would you like to have from your local government about services for people who have disabilities and their parents?There is always lack of information. All information we get from parents, who have the same problems as we. Any kind of information would be very useful for us.
What services do you think can be useful for you as a parent?
All kind of information , to be precise, any information that is important for me, would be useful. I would try to apply this information in my everyday life.
It is lack of information. It seems that the state in everything hiding from us and tries to hurt us. No one has ever phoned us, wrote a letter to us or informed us in any other way what type of compensations we are entitled to. We get all information communicating with other parents who raise children with disability. We get such an impression that if we do not know, we are not entitled the compensation. Up to 18 years old nobody came to us to check if a child is washed, or fed or clothed. Only at the age of 18 representatives of institutions started to worry who should take care of Margaret, who should be her guardian, who should manage her financial issues. We have passed cross paths until we proved that we are not asocial family, that we are not alcoholics, etc.. We turned to the lawyer, who said that this is the first case in his career. We fought with these problems ourselves, by our own initiative; we did not look for help from the outside.
The problems we face today.
We are feared what happens when we are no longer able to take care of Margaret. Also we would like to go somewhere with my wife to relax, but we do not do it because of solidarity with the daughter; if she cannot go, we can’t go neither. The only entertainment for the daughter is the concerts, which she likes very much, and we try not to miss performances of her favourite artists.
The lack of services.
We would like "Viltis” could arrange more summer camps for disabled persons, special discotheques for disabled persons at weekends with volunteers. Also weekend trips with disabled persons to rural tourism or just to the nature could be organized. It could be a mandatory practice for students.
Our major concern is communication that allows expanding the horizons of Margarita. We have the possibility to keep her at home, but neither she nor we want to do it. On the way to the centre she communicates with drivers, with visitors on arrival at the centre; she would not get this communication sitting at home and watching TV.
What factors influenced improvement of quality of life of your family?
Economic and political situation. I am afraid of the future.
What kind of information would you like to have from your local government about services for people who have disabilities and their parents?
We want more services, support for families, sport complexes, some discounts in payment for services. Children need movements, camps, activities...
What services do you think can be useful for you as a parent?
Psychological help, caring children, especially during summer holidays.
My main expectation is adaptation of my son in society. It is important to teach my son to understand what is going around and to accept everything that is going around him.
What factors influenced improvement of quality of life of your family?
Quality of life of the family influences inablity of my son to communicate with his peers, his inability to understand this or that sutiation, behavious of people.
What kind of information would you like to have from your local government about services for people who have disabilities and their parents?
At present we do not get any information from authorities. Any kind of information isd required.
What services do you think can be useful for you as a parent?
Any kind of services are required, it is important ot offer the services.
I am very worried about the health of my son in the future. We would like to get a steady rehabilitation therapy to stop progression of desease.
What factors influenced improvement of quality of life of your family?
The life of my family has improved after i have started to attend the employment centre.
The Son is more interested, and my family has more free time.
What kind of information would you like to have from your local government about services for people who have disabilities and their parents?
We get enough information.
What services do you think can be useful for you as a parent?
I think that at present we get enough services.
No answer
What kind of information would you like to have from your local government about services for people who have disabilities and their parents?There is always lack of information. All information we get from parents, who have the same problems as we. Any kind of information would be very useful for us.
What services do you think can be useful for you as a parent?
All kind of information , to be precise, any information that is important for me, would be useful. I would try to apply this information in my everyday life.
12) Interview
What are the problems you have encountered?It is lack of information. It seems that the state in everything hiding from us and tries to hurt us. No one has ever phoned us, wrote a letter to us or informed us in any other way what type of compensations we are entitled to. We get all information communicating with other parents who raise children with disability. We get such an impression that if we do not know, we are not entitled the compensation. Up to 18 years old nobody came to us to check if a child is washed, or fed or clothed. Only at the age of 18 representatives of institutions started to worry who should take care of Margaret, who should be her guardian, who should manage her financial issues. We have passed cross paths until we proved that we are not asocial family, that we are not alcoholics, etc.. We turned to the lawyer, who said that this is the first case in his career. We fought with these problems ourselves, by our own initiative; we did not look for help from the outside.
The problems we face today.
We are feared what happens when we are no longer able to take care of Margaret. Also we would like to go somewhere with my wife to relax, but we do not do it because of solidarity with the daughter; if she cannot go, we can’t go neither. The only entertainment for the daughter is the concerts, which she likes very much, and we try not to miss performances of her favourite artists.
The lack of services.
We would like "Viltis” could arrange more summer camps for disabled persons, special discotheques for disabled persons at weekends with volunteers. Also weekend trips with disabled persons to rural tourism or just to the nature could be organized. It could be a mandatory practice for students.
Our major concern is communication that allows expanding the horizons of Margarita. We have the possibility to keep her at home, but neither she nor we want to do it. On the way to the centre she communicates with drivers, with visitors on arrival at the centre; she would not get this communication sitting at home and watching TV.
13) Interview with a mother of a daughter Date: 14-01-2015
What are your expectations / ambitions for your son’s life? Are they changing during the time?At present there was more optimism. Now we are more realistic. My expectations - it is important that he could be able to take care of himself, to go to the shop, to stay alone at home.What factors influenced improvement of quality of life of your family?
Economic and political situation. I am afraid of the future.
What kind of information would you like to have from your local government about services for people who have disabilities and their parents?
We want more services, support for families, sport complexes, some discounts in payment for services. Children need movements, camps, activities...
What services do you think can be useful for you as a parent?
Psychological help, caring children, especially during summer holidays.
14) Interview with a mother of a daughter Date: 27-11-2014
What are your expectations / ambitions for your son’s life? Are they changing during the time?My main expectation is adaptation of my son in society. It is important to teach my son to understand what is going around and to accept everything that is going around him.
What factors influenced improvement of quality of life of your family?
Quality of life of the family influences inablity of my son to communicate with his peers, his inability to understand this or that sutiation, behavious of people.
What kind of information would you like to have from your local government about services for people who have disabilities and their parents?
At present we do not get any information from authorities. Any kind of information isd required.
What services do you think can be useful for you as a parent?
Any kind of services are required, it is important ot offer the services.
15) Interview is made with a mother of 27 year old young man . Diagnosis: cerebral paralysis with tetraparėsis, mental retardation
What are your expectations / ambitions for your son’s life? Are they changing during the time?I am very worried about the health of my son in the future. We would like to get a steady rehabilitation therapy to stop progression of desease.
What factors influenced improvement of quality of life of your family?
The life of my family has improved after i have started to attend the employment centre.
The Son is more interested, and my family has more free time.
What kind of information would you like to have from your local government about services for people who have disabilities and their parents?
We get enough information.
What services do you think can be useful for you as a parent?
I think that at present we get enough services.
16) Interview is made with a mother of 12 year old girl. Diagnosis: autism, moderate mental retardation
What are your expectations / ambitions for your son’s life?
Are they Fear about the future. It is a lack of supported housing (when we pass away, our daughter will live without caregiver) where our daughter could live and have a personal assistant.
What factors influenced improvement of quality of life of your family?
Not all schools equally arrange education process. Quality of education differs. For example: one school teacher makes a pupil to work independently, but he/she does not explain how to fulfill the task - write a letter „A“ - he does not explain what it is, how to write it, etc.
What kind of information would you like to have from your local government about services for people who have disabilities and their parents?There is a lack of information from the authorities: about occupation centres, another serious problem is employment. The state could create jobs especially for parents who have children with mental disabilities, so as parents have time to go back home and meet the son or daughter returning from schools or from centers.
What services do you think can be useful for you as a parent?It would be good if a social worker comes to your house, as parents sometimes need to work longer and have not time to come back home to meet the daughter. It is Lack of occupation, parents not always can take their child to a circle or anywhere else; a social worker could help them in this case.
What factors influenced improvement of quality of life of your family?
Not all schools equally arrange education process. Quality of education differs. For example: one school teacher makes a pupil to work independently, but he/she does not explain how to fulfill the task - write a letter „A“ - he does not explain what it is, how to write it, etc.
What kind of information would you like to have from your local government about services for people who have disabilities and their parents?There is a lack of information from the authorities: about occupation centres, another serious problem is employment. The state could create jobs especially for parents who have children with mental disabilities, so as parents have time to go back home and meet the son or daughter returning from schools or from centers.
What services do you think can be useful for you as a parent?It would be good if a social worker comes to your house, as parents sometimes need to work longer and have not time to come back home to meet the daughter. It is Lack of occupation, parents not always can take their child to a circle or anywhere else; a social worker could help them in this case.
17) Interview with a mother of a 24 years old son. Date: 22-12-2014
The family – mother and a son - lives in Vilnius. The son attends day occupation centre in Vilnius.
What are your expectations / ambitions for your son’s life? Are they changing during the time?Mother of a 24 year old young man works not far from her house in the day care centre for persons with disabilities. The family consist of 4 persons. Vitaliy is the younger son in the family. The son is ill from the childhood – mental retardation, low muscle tone and speech difficulties. The mother says that at present she does not have any ambitions. She is quite satisfied with the life they live now - her son attends day occupation centre, he likes to be among his friends and peers, he likes social workers who work in the centre and help him during the day activities. Expectations – she thinks about the health of her son and dream is to see his health not to become worse. When her son was a child she thought it was possible to improve his health with some medicine methods, new discoveries in the field of medicine, but in the course of time she understood the complexity of problems. She understood that there are diseases which cannot be 100% cured. Her son needs good care, he should be taught life skills, communication skills, should be engaged in day occupational activities. This is what they do in the day occupation centre Vitaliy attends.
What factors influenced improvement of quality of life of your family?
Mother noticed that communication of her son with his friends and peers improved his state of mind. Her son willingly goes to the centre. He gets up early and goes to the centre by a special bus in a good mood as he knows that he will meet his friends and social workers. After he comes back home he tells about activities they had in the day-time, about his friends and even during the weekend he speaks about it.
What kind of information would you like to have from your local government about services for people who have disabilities and their parents?Mother says that till now she got all necessary information from the centre her son attends, from other parents and her neighbour. She finds information in magazine “Viltis” about services, Viltis association activities, some legal advices. At the age of 21, her son had to go from school to the day occupation centre. She applied to municipality and got some offers about the centres her son can go to. It would be good to get information about sanatorium treatment, if there are some discounts on vouchers for disabled persons.
What services do you think can be useful for you as a parent?For this family would be good to have some services at home for 2-4 hours, when it is a need to go somewhere for personal reasons – meetings, seminars, theatre, to do some paperwork, etc. She knows about respite-care service that started to function in Vilnius last year. They require a big package of documents and Tatyana is ready to collect all necessary papers. Though the price of respite care services is rather high, it is a good help for parents when they need to leave their son or daughter for several days.
