Civil sector experts discuss the changes that the healthcare system needs to help treat the autism spectrum disorder at early stages.
Thirty per cent of children with autism can be completely cured. Main thing is to diagnose the disorder in time and start the treatment. Its cost will also depend on the child’s age. “If diagnosed correctly and started being treated at the age of 3-4, the child will completely catch up with the peers, and no one will ever think that the disorder ever existed,” said Volodymyr Stefanyshyn, director of LLC “IGP” during a press-briefing at Ukraine Crisis Media Center.
Seven-year-old Olenka started showing the signs of the autism spectrum disorder when she was four months old, however, doctors failed to diagnose it correctly at that time. “We started noticing some signs starting from the fourth month. The child lost some skills, she stopped looking in the eyes. But doctors were saying that nothing serious was happening and we needed to wait. The child started having some typical symptoms when she was about thirteen months old. When Olenka was two years and 10 months old, this diagnosis was made. […] We did not give up and continued inquiring into what exactly leads to the pathology,” said Oleksiy Yehorov, the father of the child.
Development of autism is caused by various genetic disorders. Among them is the folate cycle deficit. “If a child manages to skip this stage, at adult age they may experience oncological diseases, as well as immunological diseases like bronchial asthma,” Stefanyshyn said. At the same time vaccination may serve only as a trigger. Same effect may be caused by influenza or intestinal infections. Among the signs that indicate development of autism in a child are skin rashes, joint pain; 70-80 per cent of them have digestion problems. “All these symptoms point at the need for diagnosing. The full spectrum of diagnosing costs UAH 3,000 (the equivalent to a minimum wage), early treatment – UAH 200,000, late treatment – UAH 500,000,” Stefanyshyn said.
Qualified assistance in Ukraine has not been standardized. Doctors often do not agree the treatment program with each other, it hampers the comprehensive treatment of a child. “There needs to be a curator, coordinator, who will be working out the assistance strategy together with the parents. It is expected that the medical, psychological, pedagogical and social component will be agreed in it. At its basis there need to be comprehensive understanding of the child’s daily life and of how social partnership with the rehabilitation centers, schools and clinics need to be organized. All who are taking care of the child need to have a clear understanding what they are working on and what the signs of the positive dynamics are. It is a highly responsible teamwork, when the results are carefully followed. We should learn to work this way,” said Tetiana Skrypnyk, PhD in psychology, professor at the Borys Hrinchenko Kyiv University.
At the moment families that have children with special needs who require treatment are counting on financial assistance from charity actors. “There is quite a number of these families in Ukraine, and they all need help and support, but it is hard for them to reach out to the wider society. […] Ukraine has got no clear mechanism for implementation of laws. They are formulated but not followed in practice. The Convention on the Rights of the Child is not implemented properly. Ukraine does not do enough to protect children’s rights. Olenka’s family fell victim to this situation. Medical reform needs to take place, so that 50 per cent of the medicines and treatment costs are covered by the state. Standards of the state financial support need to be increased for such families,” Christian Oleksiy Janer, president of NGO “Ukrainian Social Coalition”. At the same time in 2016 UAH 13 million returned back to the Healthcare Ministry budget as it was not spent for the needs of children with autism. “Ukraine does not offer neither education for children with autism, nor rehabilitation facilities. All the facilities are not connected to each other,” added Yulia Pavlovska, founder of “Special mum” (Osoblyva mama) NGO.
Contact information and account numbers to raise funds on the subject:
Child’s dad: Yehorov Oleksiy tel.: +38 (066) 700-21-24, e-mail: firstname.lastname@example.org
Child’s mother, Natalia V. Yehorova, tel.: +38 (093) 461-30-93, e-mail: email@example.com
Bank accounts for donations (in the name of mother):
PrivatBank (UAH) – 5168755611751740
PrivatBank (USD) – 5168745011992168
PrivatBank (EUR) – 5168745011992143