Abstrakt
Artykuł dotyczy wczesnego okresu życia osób z upośledzeniem wzroku. Interwencja w tym okre-sie ma wpływ na ogólną jakość życia tych osób i ich otoczenia społecznego. W artykule skoncentrowa-no się na jakościowych wskaźnikach opieki nad jedskoncentrowa-nostkami z upośledzeniem wzroku, ze szczególnym podkreśleniem wczesnej opieki. Studia przypadków ilustrują potrzebę wczesnej interwencji i jej wkład w jakość przyszłego życia osób z upośledzeniem wzroku i ich rodzin.
Zaprezentowane studium jest wynikiem badań wspieranych przez projekt IGA: IGA_
PdF_2016_013 zatytułowany ”Factors affecting the quality of life of people with special needs [Czyn-niki wpływające na jakość życia ludzi ze specjalnymi potrzebami]”.
Słowa kluczowe: rodzina, dziecko z upośledzeniem wzroku, wsparcie, wczesna interwencja.
Introduction
Very few people nowadays doubt that the most important foundations for furthering a person’s life are created and held within the family. The prerequisite that the family will operate as the “architect” of future relations is that it has to be functional in itself. Early intervention centres serve as the means for a correctly functioning family, that is a family which is able to take care of a child with visual impairments and other family members. The burden that is caused by the presence of a disability in a child is usually compounded with a relatively long diagnostic process: waiting for a diagnosis and demands caused by the use of specific technical aids and communication techniques (Potměšil, 2013). The overall burden is thus optimally controlled to an acceptable level by early intervention services.
Early care is a service that was organized in the Czech Republic after 1989 with-in the organization for adults with severe visual impairment – The Blwith-ind Union. Its goal was then, as it is now, to support families of children with severe visual impair-ment (Stejskalová, 2010) The organization Association for Early Intervention was founded in 1997; in the same year, its members established the first of seven centres of early intervention care. Early care was provided in the context of non-govern-mental and non-profit organizations until the adoption of Act no. 108/2006 Coll.
on social services. The Act no. 108/2006 Coll. ranked early intervention care under social services, which endowed all the centres with legal personality. Until then, they were funded by the Association for Early Intervention. Currently, there are sev-en csev-entres of early intervsev-ention for families with childrsev-en with visual impairmsev-ents in the Czech Republic, which were previously sponsored by the above-mentioned company for Early Intervention. This organization currently comprises only five centres – in Prague, Olomouc, Ostrava, Brno and České Budějovice. The other two centres have partnered with the organization Eda Prague and work separately; these are the centres in Liberec and Plzeň.
Hradilková, who was and still is one of the leading figures of early care in the Czech Republic, defines (2006, p. 6) early care as a “system of services and programs provided to children and their families in order to prevent disability, to eliminate or mitigate its consequences and to provide family, the child and the society prereq-uisites for social integration. These services should be provided from revealing the risk or disability to the admission of a child to educational institutions so as to
in-crease the developmental level of the child in areas that are vulnerable to disability.”
Early care is a particular field service. It means that the counsellor visits the family at home, and they cooperate and progress in the natural environment of the child.
Consultations in the family’s natural environment make it possible to approach each client individually and are the most suitable form for all parties involved. Kor-hoňová (2006) sees the benefits of this form of cooperation as follows:
• At home, the child and parents can feel relatively at ease.
• In working with the child, the consultant uses objects and toys that the child and parents normally use. Furthermore, parents can use them for purposes \ indicated at instruction.
• Personal contact with clients in the ambulance often gives the wrong idea about family relationships, possibilities of the family and status of the child in the family. Visiting the home environment can help the consultant to understand more precisely how the family works.
• Parents can get adequate advice on practical issues such as adaptation of the flat (house) and the child’s room according to his/her state of eyesight only when the consultant visits their home.
The early intervention care services can provide parents with an important op-portunity to exchange experiences with other parents and obtain information from experts (Stejskalová, 2011). For this reason, along with individual consultations, these centres organize meetings and workshops for parents, experts’ seminars, and one-week courses for families. Activities that can be provided to clients by early intervention centres are seamlessly distributed and listed in Decree no. 505/2006 Coll., which implements certain provisions of the law on social services. These are:
A) Educational and motivational activities: the service identifies the needs of the family and children with disabilities, skills and abilities of the child and parents;
it offers parents a specialized counselling; it provides parents or other caregivers with child skills training, with the goal to gain his/her maximum cognitive, sensory, motor, and social development; it offers programs and techniques to support the child’s development; it provides parents with information and educates them indi-vidually or in groups; it organizes seminars and lends literature
B) Mediating contacts with the social environment: to help the family consoli-date and promote contacts with their social environment and socially integrate into it; to help families use commonly available services and information resources
C) Social therapeutic activities: an early care centre organizes residential cours-es for familicours-es and family meetings; it supports familicours-es to exchange experienccours-es with other clients and provides psychosocial support through (attentive) listening
D) Assistance with legal matters and personal matters: the opportunity to ac-company the family when visiting local authorities, when dealing with requests for medical examinations with a child or other negotiations concerning the child de-velopment; encouraging parents’ communication skills, their ability to inquire and promote their self-help activities.
In 2016, Šárka Tesařová conducted a survey among five families who had used early intervention services. The main objective of this research is to analyze the ac-counts of families having a child with visual/multiple disabilities. A partial goal is to assess their quality of life from the perspective of parents and focus on whether and to what extent it is influenced by working with centres of early care and the services they provide.
The research sample
The basic research samples were provided by either parents of preschool chil-dren with multiple disabilities or visual impairment, or parents with older chilchil-dren with disabilities, who could assess the early intervention services in hindsight. These are the stories of five families who were willing to share their experiences and per-sonal information. The names of the respondents were changed for privacy reasons.
We came into contact with these respondents via two FB groups that were in-terested in: “Parents of children with disabilities and people with disabilities unite”
and “Let’s help each other – a group of blind and partially-sighted people.” Selected parents responded eagerly to the plea for cooperation and, what is more, some of them provided contacts to other parents with children affected by visual impair-ments. In all cases, respondents were mothers of these children.
For Individual families and their child/children with visual or multiple disabil-ities see Table no. 1.
Table no. 1 Respondents
Respondents The child’s disability The child’s age today Hana Svobodová Moderate to severe mental
retardation, visual impairment,
hearing loss, epilepsy Adélka, 7 years Jana Jasparová Twins with blindness and moderate
mental retardation Lucie and Lýdie, 17 years Markéta Bartoňová Retinopathy II. - III. degree,
strabismus, photophobia, myopia,
spastic diparesis Anička, 6 years
Jana Hajná
hydrocephalus side and III.
chambers, cerebral palsy – spastic quadruparesis, paralysis of eye
Coloboma of the iris (+ 4.5 diopters for the left eye and the right inferior narrowed field of vision without
diopters), photophobia.
Amálka, 4 years
The investigation identified several problem areas about which we have tried to obtain information via mediation talks and associated questionnaires.
The assumption no. 1:
The parents of a child with visual impairment were not previously aware of the existence of early intervention.
Svobodovi: Mrs. Hana states that she learned about the existence of early inter-vention in hospital, when they were informed about Adélka’s disability. Before that, she was unaware that such service was available.
Jasparovi: The nursery school teacher put Mrs. Jana in contact with the early intervention care centre at the time when the older of the twins lost both of her eyes.
She knew nothing about those services before that.
Bartoňovi: Mrs. Markéta was informed about the possibility to use early care services by an ophthalmologist. Before that, she did not know that such a service was available.
Hajní: Mrs. Jana did not find out about the existence of an early intervention centre until her daughter Natálka turned four. She read the leaflet about the service in the ophthalmic surgery.
Zelenkovi: Mrs. Kateřina was not aware about early intervention services even though she herself is visually impaired. She was informed about this service at the hospital when her daughter was examined.
All five respondents found out about the early intervention services via some kind of mediator (teacher, doctor, leaflet, etc.) only when the issue of visual impair-ment became relevant to them due to the disability of their child.
The assumption no. 1 was confirmed by all five respondents.
The assumption no. 2:
Early Intervention centres have fulfilled the expectations of parents.
Svobodovi: Mrs. Hana was satisfied with early care services. According to her, they were a great source of information. She considered early care worker visits at
home the most valuable because her child did not like changes. At the same time, however, she suggested something that would improve the services. In her opinion, the centre should not concentrate only on one problem but should deal with the issue in a more comprehensive way. Her daughter Natalie has multiple disabilities and, as such, she expects a more complex approach when dealing with her needs.
Jasparovi: Mum Jana stated that the early care services met all her expectations.
She found friends in families having children with the same disability owing to the early care centre. Her daughters found their friends there too. She thinks that it was excellent that the workers of the early care centre familiarized her with the ways of teaching and stimulating the development of her twin daughters and showed her appropriate toys.
Bartoňovi: Mrs. Markéta responds to the question of early intervention service quality positively; she considers it to be sufficient. As a previous respondent, she re-gards meeting with families at events held by the early care centre as beneficial and as an opportunity to exchange experiences.
Hajní: Mrs. Jana talks about the early intervention centre positively. She was pleasantly surprised by the competences of the adviser who visited her at home. She wishes that the society knew more about this type of service. She found out about the early care centre too late and by accident.
Zelenkovi: Mrs. Kateřina talked about her fulfilled expectations with early inter-vention. She said that on the one hand, her situation was not so difficult because, be-ing visually disabled herself, she knew what to expect from her daughter’s disability;
on the other hand, however, she experienced doubts whether she could take care of her daughter in the same way as if she were healthy. Early care provided them with emotional support and information about training opportunities for the daughter in a special nursery school, thanks to which they experience great progress.
All respondents reported positive experiences with the early intervention cen-tre, and thus confirmed satisfaction with their services.
The assumption no. 2 was confirmed by all five respondents.
The assumption no. 3
The parents of children with visual impairment see the greatest psychological support in the knowledge that they do not have to deal with their problems alone thanks to their friendship with other families which are in the same situation.
Svobodovi: Psychological support and assistance to their family consists of many pieces, as Mrs. Hana says. The family lives in a small village, where everyone knows them and their neighbours are not indifferent to the family’s predicament and support them. Neighbours help collect the bottle caps for her daughter Adéla and some of them even regularly help with their sorting. This is evident from the
personal group on Mrs. Hana’s Facebook account, which serves to support Adélka.
The staff of the school Adéla attends support the family too.
Jasparovi: Ms. Jana finds the greatest psychological support and help within her own family. She also appreciates the organization Home for me, which provides them with such assistance services as picking twins up from school or organizing urban camps. She assesses this positively, as it allows her to save time. Clearly, in this case, our assumption was not confirmed.
Bartoňovi: Mrs. Markéta’s husband helps her the most; they are supportive to each other. If necessary, they can receive support from other relatives. Our assump-tion proved not to be valid in this case.
Hajní: For Mrs. Jana, the greatest psychological support and assistance is provided by her husband, even though he is at home only at weekends. Her adult daughter is also of great help. If necessary, the mother can receive support from a friend who works as a clinical psychologist. Thus, we have to reject the assumption in this case too.
Zelenkovi: Mrs. Kateřina’s situation is especially difficult because of her own limitations, and also because she can not expect support from her extended family.
They seek support mostly from the immediate family; their older daughter often helps them. Our claim was not confirmed in this case either.
The assumption no. 3 was confirmed partially, by one family; three other families did not confirm our assumption.
The assumption no. 4:
Parents meet with uncomfortable, sorrowful or rejecting reactions to their child’s disability from the surrounding society.
Svobodovi: Mrs. Hana described positive reactions of her neighbours towards her daughter’s disability, of which she often feels moved. She did not experience any directly negative reactions. She adds that strangers on the street or in public trans-port services sometimes glance curiously, but this does not bother her.
Jasparovi: Mrs Jana never met with negative reactions in her neighbourhood, where she found friends. However, she reports that strangers sometimes (usually when travelling) even utter negative comments on her twin daughters’ behaviour because they can react “inappropriately” to certain stimuli. She adds that she used to be touched by those reactions, but nowadays she repels these attacks. Mrs. Jana met with direct negative reactions, so we consider our assumption confirmed in her case.
Bartoňovi: Mrs. Markéta states that her daughter was accepted by her commu-nity without any problems. She did not recall any negative reactions. She only adds that some people seem envious of the state disability benefit, even though they have no idea how “beneficial” it is for them. Thus, the research assumption was not con-firmed in this case.
Hajní: Mrs. Jana experienced a negative reaction from her immediate family because her mother-in-law does not accept Adelka as a family member.
Zelenkovi: Mrs Kateřina confirms regretful reactions from her neighbourhood on Amálka’s disability. She even admits the fact that her sister have suggested put-ting the child into an institution, which made her really angry. The research as-sumption was confirmed in this case.
Mrs Jana, Jana and Kateřina met with direct negative reactions to their daugh-ters’ handicap. The other two respondents perceive reactions of their surroundings as positive, and they do not mention any negative reactions towards their children’s disabilities.
The assumption no. 4 was confirmed by 3 respondents, 2 respondents did not confirm it.
Assumption no. 5
According to parents, their life has the same value as the life of families with healthy children even though they experience unfavourable circumstances.
Svobodovi: Mrs. Hana states that it is not possible to tell whether living with a child with a disability is better or worse than living with a child without a disabili-ty. It is different, mostly in terms of the activities and longer time spent on childcare.
In the case of Mrs. Hana, we consider the assumption to be confirmed.
Jasparovi: Mrs. Jana mentions the necessity to adapt her life to the life of her daughters. She adds that she has to ensure full-time supervision for her daughters, which limits her. However, she thinks that the life with disabled children has the same value as the life of other families. The point is whether a person can perceive their life as beautiful and fulfilling.
Bartonovi: Mrs. Markéta does not consider her daughter to be different from other children except that she has special needs. The mother thinks that the special care for her daughter adds meaning to her life.
Hajní: Mrs. Jana said that she was completely limited by the disability of her daughter and that her life was different from the life of a regular family. She has to provide her daughter with 24-hour care, similar to that given to a new-born baby.
She is convinced that the life of a family with healthy children is much easier. There-fore, our assumption was not confirmed in the case of Mrs. Jana.
Zelinkovi: Mrs. Kateřina perceives her life as limited mostly because of her own disability, which does not allow her to enjoy some activities with her children.
Moreover, she suffers from the remorse that her daughter is disabled because of her.
She admits that both of these facts make the parenthood really challenging, even though her daughters are not aware of their disabilities and her efforts yet. She also mentioned a positive aspect of having a disabled person in the family. We consider this research assumption partially confirmed.
The assumption was confirmed by 3 respondents, one respondent confirmed it partially, and one did not.
Assumption no. 6
Parents are considerably worried about the future of their child.
Svobodovi: Mrs. Hana is concerned for her daughter Adela because she does not know who will take care of her fully dependent child when she is no longer able to provide the care that her daughter needs. She trusts in the people around her that
Svobodovi: Mrs. Hana is concerned for her daughter Adela because she does not know who will take care of her fully dependent child when she is no longer able to provide the care that her daughter needs. She trusts in the people around her that