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Two foundations have developed rules for the ethical provision of services to people with Down syndrome

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The charity foundations "Downside Up" and "Love Syndrome" have developed a Declaration of Ethical Principles for providing services to people with mental disabilities, including those with Down syndrome. It is addressed to all specialists whose work is somehow connected with helping such people: teachers, doctors, employees of museums, banks, hotels.
"Society should have a common understanding of how to treat people who are not like others, with their own characteristics. Each person is a unique person with a unique inner world that is worthy of respect.
We want a person with Down syndrome and their loved ones to stop feeling pressure, disrespect and devaluation", explained Yulia Lavricheva, general director of the Love Syndrome Charitable Foundation, in a comment for «».
According to her, parents of children with Down syndrome face unethical towards themselves and their children almost everywhere: in medical and educational institutions, on the street, in the store, on the playground.
Parents have the right to information and their own opinion
Ethics violations begin from the moment the diagnosis is reported. “All the studies carried out by Downside Up Foundation related to the Diagnosis Reporting Protocol show that parents in maternity hospitals and clinics face the fact that specialists put pressure on them, allow subjective statements, and psychological assistance is often not provided.
Parents often do not receive full information about the prospects for the development of a child with disabilities. A similar situation is observed in all spheres of life", said Alexander Borovykh, Director of the Strategy Department of the «Downside Up» Foundation, an expert of the «Love Syndrome» Foundation.
According to the Declaration, parents have the right to receive full information about the achievements and difficulties of the child, as well as about ways to protect his interests, set out in simple and understandable language. At the same time, they have the right to have their own view on the process of raising their child.
Listen to a person with Down syndrome correctly
A separate block of rules concerns communication with people who have difficulties with speech.
"People with mental disabilities may have difficulties in speech, and due to established stereotypes, they are not perceived as full — fledged participants in communication, - said Alexander Borovykh. — Almost always they are defenseless before society, because they have difficulties in expressing themselves, expressing their opinions.
On the other hand, specialists themselves often do not know how to communicate with people with mental disabilities and with their parents".
The Declaration prescribes not to interrupt or correct a person who has difficulties with speech, to let him express his thought to the end. Maintain eye contact with the interlocutor, ask questions again, formulate questions so that they can be answered briefly. Do not talk about the present person with mental features in the third person, be polite, correct, and tolerant.
Prevent bullying and respect privacy
“People with mental disabilities, including those with Down syndrome, are among the most vulnerable categories of the population. In relation to them, there is an increased likelihood of injustice or causing additional harm, therefore the process of communication or providing them with services requires special attention and protection”, the Declaration says.
The document calls on specialists to suppress any manifestations of bullying against people with mental disabilities, as well as their relatives and friends. We are talking about a boycott, the use of offensive nicknames, deliberate damage to property, public discussion of the physical or intellectual disabilities of the victim, etc.
The basic principles for the provision of services set out in the Declaration assume respect for privacy and protection of the confidentiality of personal information of a person with mental disabilities, harmlessness, inadmissibility of using it for personal, professional or financial gain, etc.
When people serve people with mental disabilities, professionals should use their knowledge and skills appropriate to the situation and be honest - just as they do with all other clients.
The “Love Syndrome” and “Downside Up” charities called on the professional community, families of people with mental disabilities, as well as all concerned citizens to discuss the Declaration. Each person can follow the link and, by filling out a special form, submit their suggestions and comments.
“As a result, there should be a living and efficient document that will help both parents and specialists”, said Yulia Lavricheva.
The project is supported by the Presidential Grants Fund