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The charity Foundation "Downside Up" conducted a sociological study on the topic of compliance with ethical principles in relation to children with Down syndrome

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718 respondents from various regions of the Russian Federation took part in the survey conducted by the Downside Up Charity Foundation. The target group of the survey included families with children with Down syndrome from 0 to 18 years old, as well as experts in the field of education, health, social services, and representatives of the non-profit sector. Place of residence of the target group: from localities with a population of up to 100,000 people to cities with millions of inhabitants.
The results of the survey showed that ethical principles in relation to children with Down syndrome and their families are more often observed in large cities than in villages or cities with a population of less than one hundred thousand, which is an indicator of the general cultural level of the population.
The expert audience evaluates compliance with ethical standards in relation to children with Down syndrome and their families more positively than parents. Most parents believe that ethical standards are more likely to be observed, although sometimes they are violated.
Less often, both target audiences face ethical violations against people with Down syndrome by specialists (teachers, doctors, social workers, coaches, etc.), peers and their parents, while visiting exhibitions, museums, obtaining a medical certificate for sports, banking, managing their own finances.
At the moment, the most relevant topics of the community in matters of ethics, according to both experts and parents, are: the lack/ lack of teachers who can deal with children with Down syndrome, the lack/ lack of sports sections and coaches for adaptive physical culture, the lack/ lack of an environment friendly to children with mental disabilities. Also, the survey participants noted the frequent use of the word "Down" in an inappropriate context (jokes, jokes, swearing), the reluctance of teachers to improve their skills, to be trained to work with children with Down syndrome.
The area in which ethical norms are most often violated, according to both target audiences, is professional sports sections. Respondents noted that there are not enough professional sections and sections on adaptive physical culture, as well as there is a shortage of trainers, their unwillingness to improve their skills to work with children with Down syndrome.
The expert community
A separate part of the study was devoted to the work of the expert community.
Experts who took part in the survey: speech therapists, speech pathologists, teachers, tutors - (24%), educators - 12%, psychologists - 11%, social workers - 10%. Some of the surveyed specialists live in the city (88%), with a population of 100 thousand to a million (41%) and more than a million (36%).
About half of the respondents are potentially ready to improve their skills, learn new skills to work with children with Down syndrome or autism spectrum disorder (ASD). As barriers to professional development, experts mentioned: the inability to independently pay for retraining courses (50%), the need to obtain additional qualifications (43%), lack of experience working with children with this feature (40%), lack of support from the management of the organization in which the expert works (30%), as well as the lack of material incentives (30%). Many also lack clarity on where to get additional education (27%) and how to start the process (27%).
Only 9% of experts are aware of statistics on children with diabetes in their locality.
Therefore, it is important for both non-profit organizations and the media to continue to work to inform the public about the opportunities and needs of people with disabilities. Joint actions and events involving children with Down syndrome and children without a diagnosis can continue to improve the situation and create a friendly environment for people with special needs.
In cooperation with experts working with children with Down syndrome – the help of NO is needed, which can provide support in the field in improving the skills of the expert community and providing experts with the necessary methodological information, data on statistics about people with Down syndrome in their region.
The “Downside Up” Foundation, together with the “Love Syndrome” Foundation, will continue to work in these areas to create more opportunities for a full life for people with Down syndrome in Russia.
The survey was made possible thanks to a grant from the Presidential Grants Fund for the Development of Civil Society