Social exclusion of disabled children and adults in Ukraine

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Social exclusion of disabled children and adults in Ukraine

Svitlana Paschenko

The Ukrainian law, including the Constitution of 1996, prohibits discrimination on the basis of race, sex, religion, disability, language and social rank. Unfortunately this proclamation is often broken. For example, the demands inscribed in the law refer that people with disability must have access to public and residential buildings, transportation, municipal and community services, and entertainment, as well as to various modern facilities in Ukraine. But there are practically no conditions for this in our country. The same situation is with all the other declared rights and freedoms of disabled people. In his article «Ukraine's Situation on the Social Protection of Disabled People» Serhii Pomanyuta has defined the main fields where disabled people feel themselves being discriminated and excluded. They are:

У Lack or limited access to social environment

У Lack or limited access to services

У Stigmatization of disabled people

S Unemployment S Lack of adequate training

S Lack of specialized services

S Inadequate educational system

S Lack of economic policies to compensate for the extra cost of

disability

S The structure of the benefit system

S Living in institution

All these issues are the potential areas of intervention to combat social exclusion among people with disabilities. But this list is not complete of course.

The most simple and the often met method to find out what people feel, think, have done is to ask them. Questionnaires are research instruments comprised of questions. The questionnaire must transform the objectives of the research into specific questions and the answers to these questions will supply the necessary data in testing the hypotheses. We have used this research method to collect the necessary for this abstract information and to realize the objectives.

The aims are to create the questions for the interviews with parents of disabled children, interview them in order to evaluate then their answers and learn the main factors contributing to disabled people social exclusion.

INTERVIEW # 1

This half-structured questionnaire with open-ended questions is directed to the parents of disabled children. The purpose is to find out what they think about the rehabilitation services availability and the role which local administration plays in supporting a disabled child and his (her) family.

The interviewee was informed about the purpose of asking her questions and accepted to answer. The type of the interview is «face to face». The interviewee refused from recording during the interview so I was taking some notes at the process. To guarantee anonymity, the residence of the interviewee is not mentioned in the following writings.

S How old is your child?

10 years old. She is the youngest in the family.

S What kind of disability does she have?

Deep complex disability

S How large is your family?

2 parents and 6 children, 2 of whom are adult ones and live separately.

S Do you work?

No.

S Which rehabilitation services are appointed to your child?

Physiotherapy, hydrotherapy, speech therapy, activity therapy.

S Is she getting all kinds of them? If NOT what is the reason in your opinion?

Due to the fact the rehabilitation center can provide only two last types of therapy and the local policlinics provide only some kind of physiotherapy she is not getting hydrotherapy. In our region there is no rehabilitation institution which can provide all these services in necessary volume.

S What do you think about social services in Zaporizhzhya?

Opportunities are small - of both official social services and NGOs. There is a very poor advertisement so we practically don't know the needed information about existing opportunities. And I must search this information by myself just like the most of finance. We are also lack of definite regional services. But with my child, who does not speak, move and uses diapers it is very complicated to travel around Ukraine.

S What kind of solution do you see?

Local administration should help more. For example, in training and of course financially. Actually thinking about future is frightening… What would happen to a child if parents have gone? The way children are treated in care homes now is terrible it cannot give anything good to a child like mine one. There are no many modern rehabilitation centers and majority of them are quite primitive and not very effective. They are lack of experienced professionals who

practices new methods of therapy for children with deep complex disability. At the moment I myself am training to cope with my child better.

S How has local administration helped your family?

Not a lot actually. The local social worker has not visited us to our living conditions. I will not go there any more, it's humiliating, I'd rather search for solution by myself. With the help of other children we made our own web-page and we have got a lot of new friends through it. To get help in building and repairing of our house we appealed directly to manufactures and they have helped us according to their possibilities. What we are really lack is the live communication with people who have the same problems. But in general everything is almost OK!

S Thank you!

The life conditions of disabled children and their families in are not very good and comfortable. There are too few places where rehabilitation services are offered (especially in complex).

What becomes obvious from the interview is the fact that the parents must be active themselves to find opportunities to help their children. Local administration doesn't give a remarkable amount of assistance. Also there is a shortage of training opportunities for parents which should help them to cope with their disabled children better. At the same time the local administration cannot create a support - the initiative should come from people. But maybe it is the real processes of social inclusion for which is very important to have movement and efforts from both sides (responsible administrators, professionals and people who are interested to be included).

INTERVIEW # 2

Support to foster families in Ukraine has not been developed enough. The service of family foster care is generally still in its early stages and needs a number of changes and amendments. Therefore the aim of my interview is to find out what kind of proposals the foster parents have in order to promote the engagement of children in the family life.

The following interview can be considered a qualitative theme interview with a foster parent. It took me about an hour to carry the interview. It was recorded and then transcribed. The interview took place at the parents' house.

The interview was divided into following sections:

¦ background information

¦ adaptation

¦ problems

¦ preparation for the care taking in the family

¦ possibilities to get help, relations with the officials

¦ expectations and proposals

BACKGROUND INFORMATION

N Have you had foster children before?

No, I have not.

N Where did the child come to your family from? Tell about him, please.

The child came to us from the hospital where he had undergone a medical examination. Before that the child had been in a situation of total neglect at his home. His mother didn't want to keep the child saying she was unable to love him. During her pregnancy her husband had abandoned her. The child was born handicapped with a brain damage. He has poliomyelitis. He is an 11 years old boy.

ADAPTATION

N How did the foster child adapt?

The adaptation was not difficult, the child started feeling secure from the very beginning.

N How did you adjust yourself to the new situation?

I did not have any problems either. I have a child of my own and the foster child was small when he came to us.

N What kind of help would you have liked to get during the adaptation period?

I didn't feel any need for help at that period. But I had some economic difficulties at the beginning. Fortunately I had some clothes of my own child and the neighbors helped me, as well.

PROBLEMS

S What kind of problems have you faced during the period of caring for a foster child?

To understand the child I have to think double. That has been difficult and mentally exhausting. The boy has a lot of behavioral disorders. He always pretends to be in the center of attention. He acts out in order to get attention. He is absolutely unable to take into consideration other people and it causes great problems. Our financial situation is going on to be hard. We cannot afford healthy food, vitamins, swimming. If we had more money the boy could go in for some kind of developing activities. A disabled child needs a lot of expenses.

PREPARATION FOR THE FAMILY FOSTER CARE

S What is your idea about the preparation for the family foster care?

There was no preparation for the family foster care. Nobody took interest in me. The only thing that was checked by social workers was if the kid had his own bed. More attention should be paid to the training. Foster parents are lack of proper schooling which would make them think. Parents should be told about the problems which may occur. That would make people think whether they are ready to face all the risks and challenges.

There are the items that should be discussed at the trainings. Foster parents are not able to foresee all the possible difficulties. Development of a child and cooperativeness are the subjects that should be covered. While preparing foster parents one should speak about the case of a disabled child. It is essential to inform parents about that kind of situation, as well.

S Are you satisfied with the work of social workers and other officials?

There are no regular visits of the social worker. I don't complain about it although I would rather like them. As to the social worker the problem is that I have no idea what to expect from her. I do not know what the competence of social worker is. A foster parent is being sent from one official to another as there is no cooperation between the civil servants. For example, my doctor did not inform me that with my certificate I can buy diapers at a reduced price. I heard it from somebody else. Thus, I had to go to the doctor once more to get the necessary document.

It is pretty common that officials do not trust parents. I have experienced doctors' negative attitude. They have laughed at me and considered me not a wise person.

EXPECTATIONS AND PROPOSALS

S What should be changed in the family foster care to make engagement of a child easier?

Meetings of foster parents would be greatly necessary. In order to have some relaxation parents should sometimes have the possibility to get away from home. They need to meet other parents and listen to their experience. That would give them strength. To find support and understanding, talk about one's pain, relax, gather strength, find new aims in order to return to everyday routine. There ought to be some kind of schooling during the meetings. This should be a well - planned and practical training but not just a formal event.

S What is your opinion of supporting foster families?

More attention should be paid to economic support. It is vital that psychological help was available for foster families. Despite of good relations in the family there still are communicational problems. That brings about the necessity to have a person who would listen to a parent, help to analyze his (her) problems and give him (her) an advice. The adviser may be a municipality worker but some outside and objective person would be more preferable. Social workers and people of child welfare must possess the information where to send those who need help, where they can get cheap or free consultation. It is important to organize meetings of the foster families with disordered children to share experience and information. There are certain details that can be learned with a little help from aside. Definitely, the foster parents should be given juridical consultation.

As a result of the interview it became apparent that a foster parent appreciates psychological advice as well as support from other foster parents. Therefore the interviewee pointed out the importance of foster parents' meetings to offer opportunities to share their experience, worries and support. It also became clear from the interview that minor matters may often cause problems in a foster family. The parent questioned claimed that it was not possible to foresee the difficulties of raising a foster child. Accordingly, it was considered essential to speak about potential difficulties when preparing foster families. Medical and psychological topics, legal and economic management should be discussed at the training. Parents ought to be informed about supporting options. Social workers should have more cooperation with parents and other officials.

Conclusion. It is important to remark that while we refer to people with disability as disabled, the attitude change that is necessary to end the exclusion of those people will not happen. It is also the problem of the internalization of the concept that disables the people of a society to change mentality and attitude. This is, according to the Stigma Theory, the real problem. As Thompson, quoted in Wisch (2003), underlines,

«(…) stigma theory remind us that the problems we confront are not disability, ethnicity, race, class, homosexuality, or gender, they are instead the inequalities, negative attitudes, misrepresentations, and institutional practices that result from the process of stigmatization» (Thompson, 1997 cit. in Wisch, 2003:76)

The main problem of exclusion is, to my mind, the unacceptance of what is different from a pattern that some powerful group established. So, the problem of mobility, accessibility and acceptance of disability lodges on the prejudice about disability and people with disability. As one of my colleagues (a blind person K. who is a Professor of Psychology) interviewed before remarked, «being a people with disability (…) means, in each new day, to arm oneself with a great spirit of sacrifice, a lot of courage and optimism to overthrow a large series of obstacles in a large series of situations, because almost everything is built, delineated and thought to the so-called «normal citizens» and he adds that the main psychological and moral obstacles to people with disability are «the label attributed by so-called «normal» people to the citizens with disability (…) of incapacity, disvalue on the performance of any task by their charge». Well, like this, is difficult to get some place in the society besides the ones of the margins. People with disability cannot prove that they are able to work if there are no opportunities for that, and the easier things to change are the physical and infrastructural obstacles, when there is the will for changing.

To conclude, here remains one important question that K. has put: «(…) without opportunities to show their capabilities the citizens with disabilities cannot be citizens with full rights and without opportunities to prove that they are able to work as the rest of the individuals, how will the assume responsibility charges, to study, to assert professionally, culturally and socially?»

References

social discrimination protection

1. Bloemers, W., Johnstone, D. Rodrigues, D., Wisch, F.-H. (2004). European Perspectives on Disabled People. Frankfurt am Main: Peter Lang.

2. Lansdown, G. (2001). It's Our World Too! A Report on the Lives of Disabled Children. London: Disability Awareness in Action.

3. Reforming Social Services, retrieved from

http://www.lp.edu.ua/CIDA/disability.html

4. Romanyuta S.O. Barrier-Free Access for the Disabled in Ukraine: Public Policy Analysis, retrieved from http://unpan1.un.org/intradoc/groups/public/documents/NISPAcee/UNPAN004658.pdf

5. Social Exclusion and Conflict: Analysis and Policy Implications, retrieved from http://www.crise.ox.ac.uk/SocialExclusionandConflict.pdf

6. Stake, R.E. (2000). Case Studies. In N.K. Denzin, Y.S. Lyncoln (Eds.), Handbook of Qualitative Research (2-nd Ed.) (pp 435-453). Thousand Oaks, California: Sage Publications. UNESCO (1994): The Salamanca Statement and Framework for Action on Special Needs Education. Paris: UNESCO.

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