New UNICEF study sheds light on the attitudes toward children with disabilities in Bulgaria
The UN Children's Fund calls for the full implementation of early identification and early intervention system for children with disabilities in Bulgaria
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About 80% of parents of children up to 6 years of age without disabilities believe that children with physical or intellectual disabilities suffer because of negative attitudes towards them. Just as many parents of children with disabilities also agree with this statement.
Sofia, 29 September 2022 These are some of the conclusions of a national survey of UNICEF Bulgaria focusing on social norms for children with disabilities and developmental difficulties from 0 to 6 years carried out by ‘Global Metrix’ agency. It was done among parents of children with disabilities up to 6 years of age, parents of children without disabilities in the same age group, health professionals, and specialists in social services.
The study sheds light on what people perceive as disability and what they do not; what are the attitudes of parents of children with disabilities and children without disabilities; what are attitudes towards institutions and policies for children with disabilities (education system and inclusive education, health services, living in/out of the family), as well as the attitudes among children and young people themselves – both with and without disabilities. The aim is to prove a causal link between the prevailing social norms and the risks of social exclusion and violation of the rights of children with disabilities and developmental difficulties and to draw attention to the need for a comprehensive early intervention system for children aged 0-6 years in Bulgaria.
Emotions regarding children with disabilities
Feeling pity is the prevailing emotion according to the results of the survey.
66% of parents of children with disabilities fully or partially agree with the statement: ‘I feel sorry for families with children with disabilities because they are victims of unfortunate circumstances.’ Among health professionals, 57% agree with this statement, and among social care professionals – 33%.
According to data from focus groups with parents of children without disabilities, children with disabilities are ‘shunned’ and often ‘isolated’ because they are ‘different’ and ‘weird’. Children with disabilities are perceived as more insecure and more dependent/helpless than other children, and children without disabilities are more independent/stronger than children with disabilities. Parents experience mainly emotions of pity and empathy – ‘pity’, ‘empathy’, ‘compassion’, ‘understanding’, ‘they are not guilty of being born like this’. The frustration of not being able to help children in need leads to self-blame and creates a ‘sense of guilt.’
52% of parents of children without disabilities said they felt sorry for children with disabilities, 34% admitted they felt insecure as they did not know how to treat them, and 35% felt uncomfortable and found it difficult to relax. However, a total of 93% of respondents also said they try to behave normally and ignore disability.
Are children with disabilities ‘defective’ or ‘normal’?
From the point of view of parents of children without disabilities, children with intellectual disabilities are defined as ‘defective’ by 10.5%. Respondents with lower education, as well as those under the age of 24 and over 45, more often define them as ‘defective’. 44% of parents fully or partially agree that children with physical disabilities are different from ‘what is normal’, and these rates are again higher for children with intellectual disabilities – 54%.
Among parents of children with disabilities, 6% share the opinion that children with physical disabilities are ‘defective’, while in terms of intellectual disabilities – about 16%. Parents of children with disabilities much more often define them as ‘defective’ in comparison to parents taking care of children with developmental difficulties.
Attitudes related to education
About 80% of parents of children without disabilities fully or partially agree that children with physical or intellectual disabilities need special educational institutions (e.g. special schools or centres).
According to parents of children with disabilities, the need for special educational institutions is greater for children with intellectual disabilities than for children with physical disabilities. However, for both groups of children, there are high levels of agreement with this statement. Carevigers of children with disabilities more often share the opinion that children with intellectual disabilities should be in special educational institutions, while with caregivers of children with developmental difficulties we can see a reverse trend.
Among parents of children without disabilities, attitudes prevail that in most cases the attitudes towards children with physical disabilities and intellectual disabilities aged 3-6 years are not the same as they are towards their peers. Respondents believe that in kindergarten they are often excluded or limited in their overall development and inclusion due to their disability or difficulty. According to the experts’ interviews, often children with developmental difficulties, even if they are involved in the learning process and present in the classroom, are not successfully included in the group. They are usually positioned at the back and sides in the rooms, accompanied by an adult – parent or personal assistant, and if they are quiet and calm, they remain almost imperceptable.
From the point of view of the parents of children without disabilities, who participated in focus groups, attitudes about the possibility of children with disabilities attending a group in kindergarten together with children without developmental difficulties depend on the degree of the disability, on the one hand, and on the other – on the presence of a specialist, a resource employee.
According to focus groups with parents of children with disabilities, their experience is often related to petitions against the inclusion of their children and the lack of capacity to meet their educational needs within educational institutions. According to the parents, there are many regulations that in theory guarantee the implementation of inclusive education as part of the government policy, but in fact ‘everything is only on paper’. For example, in a kindergarten, they refused to accept a child with Down's syndrome, because they were worried about infecting the other children. A mother from the town of Sevlievo told how, in an informal conversation, the headmaster of the kindergarten the child currently attends compelled her to provide the child with a private teacher. Another condition within the education system, which often violates the rights of children with disabilities and developmental difficulties, is the physically inaccessible environment.
How does society treat families of children with disabilities?
The majority (nearly 59%) of the parents of children with disabilities said that others usually treat them with respect. There were low rates in terms of forms of harassment (2%), insults (3%), poor services in public places, such as shops and restaurants (3%), or less politeness towards others (4%). Approximately 7% of parents declare forms of discriminatory treatment of them and point out that very often ‘people avoid contact with them’, ‘behave as if they are frightened of them’ or demonstrate an attitude ‘as if they think they (parents of children with disabilities) are not smart.’
Data from focus groups with parents of children with disabilities differ from the above. They report they face inappropriate comments and behaviour towards their children on a daily basis. ‘They spit in their bosom, they knock on wood – nobody enjoys looking at you.’ Parents say it is an unpleasant practice for people to make comments in front of the children, albeit in good faith, about their condition, especially when the child is grown up and aware of their difficulties, as well as to use the phrase ‘such children’, which even specialists often use. Parents tell of situations where other parents do not allow their children to play with theirs, as they are worried about imitation and negative influence on the development of their own children. They also share about different, negative attitudes they receive from kindergarten teachers, doctors, neighbors, and circle of friends.
Characteristics of the families of children with disabilities and attitudes towards institutions and policies
88% of parents of children without disabilities fully or partially agree that children with physical disabilities need separate health services, and almost 80% agree on the same for children with intellectual disabilities. Parents of children with disabilities share in focus groups unpleasant sensations and impressions of health care. They say some negative experiences of consulting with doctors, as often afterward, instead of having a clearer picture, they feel more confused than before.
Attitudes towards institutions and policies
About 75% of parents of children with disabilities fully or partially agree that children with physical or intellectual disabilities cannot fit into society without financial assistance. For parents and children without disabilities, the numbers are similar - 77% agree that children with physical disabilities cannot fit into society without financial assistance for their families. For children with intellectual disabilities, the level is 71%.
62% of parents of children without disabilities believe that families of children with disabilities are not a burden on society. This opinion is also shared by 56% of healthcare professionals and 67% of social services professionals.
Data from focus groups with parents of children with disabilities and developmental difficulties also show that they do not feel sufficiently involved in policy-making that directly affects them and their children.
‘It is important for UNICEF that every child has the best possible start in life. This includes supporting parents, working with professionals, and fighting against any type of social prejudice and negative attitudes towards children with disabilities that still hinder their timely access to services. The trends in the study show that the situation is improving, but there is still much work to be done so that children, especially the most vulnerable, can unleash their potential’, said Christina de Bruin, UNICEF Representative in Bulgaria.
The survey was conducted for the first time under a new methodology of UNICEF's Regional Office for Europe and Central Asia in partnership with Drexel University.
The context in Bulgaria
Bulgaria has established a legal framework and institutional conditions for providing early childhood intervention for children with developmental difficulties. There is a primary healthcare system of general practitioners and outpatient pediatricians, which should provide preventive care for all children, as well as regularly monitor and evaluate overall child development and growth. Diagnosis, treatment and rehabilitation for specific conditions and disabilities are available through the health system, and the ‘early intervention of disability’ service is introduced in the social services system. Nevertheless, there is no systematic approach in Bulgaria to provide early intervention for all children who need it to help the child develop their full potential.
UNICEF Bulgaria supports the introduction of a systematic approach to early childhood intervention, which includes coordinated efforts within the health system to improve the monitoring of early childhood development and early detection of developmental difficulties; the establishment of mechanisms to direct children at risk of developmental difficulties to the community early intervention services; the provision of quality, family-oriented services; and support for a smooth transition to inclusive early education and care. The systematic approach is introduced in 5 municipalities (Nova Zagora, Sliven, Stara Zagora, Haskovo, and Chirpan) as part of the initiative for piloting the European Child Guarantee programme, as well as under a partnership between UNICEF and H&M Foundation on a global level. ‘The big goal we set is to help the state implement a systematic approach in early intervention across the country – based on the model that we are currently building in several key regions’, Christina de Bruin added.
Additional resources:
:: A presentation of the full study in Bulgarian can be found here.
:: A summary in Bulgarian of the study can be found here.
:: A short documentary about two families in Bulgaria, one with access to early intervention services, the other without, can be viewed here.
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