CABAR.asia
Kyrgyzstan: "A special needs child is your own problem"
Kyrgyzstan lacks rehabilitation programmes for children with cerebral palsy and outreach activities on the part of the state, according to parents of children with cerebral palsy. They complain about the deficit of money, absence of state rehabilitation centres, shortage of qualified physicians, and the lack of infrastructure for wheelchair users.
One of the biggest problems for the families with kids with cerebral palsy is money
Arshat was born in 2009. Feeling excited after the birth of their first baby, his parents did not pay attention to how much and loud their baby was crying after birth.
His mother Takhmina Asanova said that during pregnancy she was recommended a C-section because her baby was in an abnormal position:
His mother Takhmina Asanova said that during pregnancy she was recommended a C-section because her baby was in an abnormal position:
The children's cerebral palsy (CP) is the disorder of the central nervous system, which afflicts one (or several) units of the brain. This disease has various manifestations – both mental disorders and movement disorders.
Takhmina Asanova does not blame anyone. According to her, it could happen because of the combination of few factors. The birth injury could have its impact and aggravated the condition, but hypoxia could have its impact as well.
This year, Arshat is turning 12. He cannot walk, but he can crawl around the house. The boy can eat and get in a car independently, his mother helps him out of wheelchair, walks him to the car, and he does the rest unassisted.
When Asanova understood that her son won't be able to speak, she started to use alternative and additional means of communication, namely she showed him various hand gestures. Sometimes, they repeated one simple action many times. If he failed to memorise it, they postponed it and returned to it in a year.
According to her, she always focused on his development – not on medical treatment, but on the adaptation to the real world. What Arshan can do now is due to her belief in her child as well as to their everyday meticulous work.
One of the biggest problems for the families with kids with cerebral palsy is money. Such children always need nursing care, in other words, one of the parents cannot work full time. As a result, it strongly affects the family budget.
When Arshat was three years old, Asanova hired a babysitter for her son and tried to work full time. But she had to leave in eighteenth months. The babysitter could only feed the child and take care of him, but failed to exercise with him. Moreover, Arshat needed to undergo rehabilitation at Ak Suu Centre at Lake Issyk-Kul from time to time, but she could not ask her management for a leave from work all the time.
She had to leave her full-time job and look for a job with flexible hours. Then she decided to become a speech therapist and give private lessons. Now she works a few hours a day, and the money she earns, according to her, is her out-of-pocket expenses. The main financial assistance is made of the benefit, her spouse's salary, and the money from their relatives.
This year, Arshat is turning 12. He cannot walk, but he can crawl around the house. The boy can eat and get in a car independently, his mother helps him out of wheelchair, walks him to the car, and he does the rest unassisted.
When Asanova understood that her son won't be able to speak, she started to use alternative and additional means of communication, namely she showed him various hand gestures. Sometimes, they repeated one simple action many times. If he failed to memorise it, they postponed it and returned to it in a year.
According to her, she always focused on his development – not on medical treatment, but on the adaptation to the real world. What Arshan can do now is due to her belief in her child as well as to their everyday meticulous work.
One of the biggest problems for the families with kids with cerebral palsy is money. Such children always need nursing care, in other words, one of the parents cannot work full time. As a result, it strongly affects the family budget.
When Arshat was three years old, Asanova hired a babysitter for her son and tried to work full time. But she had to leave in eighteenth months. The babysitter could only feed the child and take care of him, but failed to exercise with him. Moreover, Arshat needed to undergo rehabilitation at Ak Suu Centre at Lake Issyk-Kul from time to time, but she could not ask her management for a leave from work all the time.
She had to leave her full-time job and look for a job with flexible hours. Then she decided to become a speech therapist and give private lessons. Now she works a few hours a day, and the money she earns, according to her, is her out-of-pocket expenses. The main financial assistance is made of the benefit, her spouse's salary, and the money from their relatives.
According to the law "On state benefits of the Kyrgyz Republic", children with cerebral palsy in Kyrgyzstan are entitled to a monthly benefit in the amount of 4 thousand som (46.72 dollars).
Moreover, with a view to support parents of children with disabilities, the new type of social service "Personal assistant" was introduced in 2018.
Usually, in a family with a child with cerebral palsy, one of the parents cannot work and loses their right to retirement and medical insurance. In other words, such parents have no opportunity to earn and claim for retirement. The "Personal assistant" service has been introduced in order to financially support such parents and provides for a monthly payment of 4,900 som (57.79 dollars).
Moreover, with a view to support parents of children with disabilities, the new type of social service "Personal assistant" was introduced in 2018.
Usually, in a family with a child with cerebral palsy, one of the parents cannot work and loses their right to retirement and medical insurance. In other words, such parents have no opportunity to earn and claim for retirement. The "Personal assistant" service has been introduced in order to financially support such parents and provides for a monthly payment of 4,900 som (57.79 dollars).
Bad roads and the lack of accessible ramps contribute to the heavy life of families with children with cerebral palsy. It is no secret that the majority of pavements in Bishkek are rather an obstacle course, especially when it rains. However, ramps are of the same importance, especially at shopping malls, hospitals, and other facilities.
"It's unreal to get the wheelchair up stairs," Takhmina said. "If there's no ramp at the entrance, I have to get Arshat from the wheelchair and literally carry him. If I need to buy something in a store, I have to leave him alone outside."
Takhmina was shocked even more when she found out that schools refused to admit the boy to school. When Arshat turned seven, his parents decided to visit a few schools. But none admitted the child. A principal of one of the schools said, "Your son has a learning disability, and we do not have vacant places."
"It is very bad that we do not have special conditions to educate 'special needs' children," Takhmina said. "It is wrong that children do not have the slightest chance to get education and communicate with other children."
Parents enrolled Arshat at an expensive private centre, where teachers teach him, help him develop and learn basic skills. Takhmina Asanova has to pay 17 thousand som (200 dollars) every month, yet this is one of a few ways to make her son socialise.
She is sure that there are no kids with learning disability and now she is dreaming of opening small workshops in Kyrgyzstan, where children with cerebral palsy, regardless of the severity, could study, paint, draw, craft, and simply communicate with each other.
"It's unreal to get the wheelchair up stairs," Takhmina said. "If there's no ramp at the entrance, I have to get Arshat from the wheelchair and literally carry him. If I need to buy something in a store, I have to leave him alone outside."
Takhmina was shocked even more when she found out that schools refused to admit the boy to school. When Arshat turned seven, his parents decided to visit a few schools. But none admitted the child. A principal of one of the schools said, "Your son has a learning disability, and we do not have vacant places."
"It is very bad that we do not have special conditions to educate 'special needs' children," Takhmina said. "It is wrong that children do not have the slightest chance to get education and communicate with other children."
Parents enrolled Arshat at an expensive private centre, where teachers teach him, help him develop and learn basic skills. Takhmina Asanova has to pay 17 thousand som (200 dollars) every month, yet this is one of a few ways to make her son socialise.
She is sure that there are no kids with learning disability and now she is dreaming of opening small workshops in Kyrgyzstan, where children with cerebral palsy, regardless of the severity, could study, paint, draw, craft, and simply communicate with each other.
No doctors in Kyrgyzstan
Four-year-old Khakim likes playing outdoors or rolling down the slide. What he likes most is to play outdoors with a water hose, or just wander back and forth. But the problem is that he cannot walk alone, and the adults have to hold his hand. Usually, a mother or a grandmother walk hunched over with him back and forth. No wonder their backs get tired a lot.
Khakim has a combined form of cerebral palsy. In autumn 2020, epilepsy was diagnosed in him.
Khakim has a combined form of cerebral palsy. In autumn 2020, epilepsy was diagnosed in him.
Doctors suspected cerebral palsy immediately, but they made the final diagnosis one year later after numerous examinations and visits. Back then the doctors warned that rehabilitation process would be complex and rather long.
When Khakim was four years old, he learned to crawl. Now he can stand on foot by holding on to things. He could succeed due to constant physical therapy, massage sessions, and visits to osteopaths. He started speaking at the age of three, he knows the colours and knows all letters of the alphabet. The only thing he cannot do is walk.
When Khakim was four years old, he learned to crawl. Now he can stand on foot by holding on to things. He could succeed due to constant physical therapy, massage sessions, and visits to osteopaths. He started speaking at the age of three, he knows the colours and knows all letters of the alphabet. The only thing he cannot do is walk.
According to Aliya Konurbaeva, rehabilitation is very tough in Kyrgyzstan. The republic has few qualified specialists in osteopathy and physical training. In addition, all hospitals prescribe the same treatment to all children. However, every child with cerebral palsy needs individual therapy. It depends on the severity of the disease and the general state of the patient.
According to her, thanks to the attempts of parents of children with cerebral palsy, Kyrgyzstan invited doctors from Russia, but they had to pay a lot for such visits.
"One visit to an osteopath, for example, cost up to 65 dollars. 3-4 visits must be done within a month. Also, physical exercises were to be performed to improve the locomotor system. The price of one two-week course reached 250 dollars. Moreover, all parents paid for air tickets and stay of the specialists in Bishkek. One month of rehabilitation cost nearly 600 dollars. Specialists need to be invited several times a year," Konurbaeva said.
She had no other options to treat her son as there are no doctors in Kyrgyzstan and she needs to fight the disease. Now she cannot work because she cannot leave Khakim at home alone. Therefore, her spouse and relatives bear the financial burden now:
According to her, thanks to the attempts of parents of children with cerebral palsy, Kyrgyzstan invited doctors from Russia, but they had to pay a lot for such visits.
"One visit to an osteopath, for example, cost up to 65 dollars. 3-4 visits must be done within a month. Also, physical exercises were to be performed to improve the locomotor system. The price of one two-week course reached 250 dollars. Moreover, all parents paid for air tickets and stay of the specialists in Bishkek. One month of rehabilitation cost nearly 600 dollars. Specialists need to be invited several times a year," Konurbaeva said.
She had no other options to treat her son as there are no doctors in Kyrgyzstan and she needs to fight the disease. Now she cannot work because she cannot leave Khakim at home alone. Therefore, her spouse and relatives bear the financial burden now:
Eventually, she managed to find a private centre of physical training in Bishkek that specialises in children with cerebral palsy. However, it was almost the only one in the city and she had to wait for months to visit it because there were so many people who wanted to visit it.
Then, Konurbaeva decided to buy the sports equipment and make exercises with her son independently. Earlier, one of the Russian specialists showed some exercises and now Khakim learns to climb the wall-mounted ladder and walk using parallel bars.
His mother is dreaming about her son learning to walk independently and running and playing outdoors. To do this, according to her, the state needs to pay more attention to 'special needs' children and improve environment for their treatment and development.
Then, Konurbaeva decided to buy the sports equipment and make exercises with her son independently. Earlier, one of the Russian specialists showed some exercises and now Khakim learns to climb the wall-mounted ladder and walk using parallel bars.
His mother is dreaming about her son learning to walk independently and running and playing outdoors. To do this, according to her, the state needs to pay more attention to 'special needs' children and improve environment for their treatment and development.
No psychological support to parents
Zemfira has learned to say some syllables, stand alone and stand up holding on to things by the age of eight years. We can only guess how much effort was made to reach such results.
According to mother Roksana Garieva, Zemfira is the third and youngest child in the family. The girl was diagnosed with cerebral palsy, epilepsy and psycho-speech delay. The reason for the disease was complicated delivery. The girl could not breathe on her own for the first four days after birth and was in the intensive care unit. The doctors warned immediately that in future she would have problems and disability as a consequence.
According to mother Roksana Garieva, Zemfira is the third and youngest child in the family. The girl was diagnosed with cerebral palsy, epilepsy and psycho-speech delay. The reason for the disease was complicated delivery. The girl could not breathe on her own for the first four days after birth and was in the intensive care unit. The doctors warned immediately that in future she would have problems and disability as a consequence.
Zemfira's family receives monthly benefits from the state. Roksana Garieva was not approved as a personal assistant by the medical and social assessment board.
"Of course, I felt very upset," she said. "However, my arguments that Zemfira cannot take care of herself, that she needs constant care, and that I cannot work because of that did not convince the board. I did not want to argue with them because I had neither time, nor energies."
Thus, all financial burden to support the family of five persons is on father. Of course, relatives also help from time to time.
"A special needs child is your own problem. This is the situation in Kyrgyzstan," Roksana said. "Parents have to find doctors, ways of rehabilitation themselves."
According to her, the situation has changed a bit in the last five years because parents started to invite specialists and learn some medical skills.
"Of course, I felt very upset," she said. "However, my arguments that Zemfira cannot take care of herself, that she needs constant care, and that I cannot work because of that did not convince the board. I did not want to argue with them because I had neither time, nor energies."
Thus, all financial burden to support the family of five persons is on father. Of course, relatives also help from time to time.
"A special needs child is your own problem. This is the situation in Kyrgyzstan," Roksana said. "Parents have to find doctors, ways of rehabilitation themselves."
According to her, the situation has changed a bit in the last five years because parents started to invite specialists and learn some medical skills.
Zemfira is eight now. She understands everything what she is told, she can execute particular instructions, and according to doctors, she is progressing. But there is still a lot of work to do. They need a rehabilitation centre or a swimming pool adapted for children with epilepsy. Unfortunately, there are no such facilities in Kyrgyzstan.
Please note that the stories of Arshat, Khakim and Zemfira are only three of many others. As of 2020, 1,723 children in Kyrgyzstan were officially diagnosed with cerebral palsy by the medical and social assessment board.
Please note that the stories of Arshat, Khakim and Zemfira are only three of many others. As of 2020, 1,723 children in Kyrgyzstan were officially diagnosed with cerebral palsy by the medical and social assessment board.
We're losing precious time
In February 2021, Ulukbek Maripov was appointed the head of the government of Kyrgyzstan. When he was nominated, he said that once he's elected, he would carry out the reform of public administration and reduce the number of state servants. He based his decision on the fact that the government office is too excessive, officials often duplicate each other's functions, and work inefficiently.
As a result, the government structure was reorganised, and some agencies, services and offices became subordinated to relevant ministries.
Thus, after the reform, Kyrgyzstan became to have the ministry of health and social development, which joined the ministries of health, social development and labour. In addition, it now includes the Social Fund, Compulsory Medical Insurance Fund (FOMS), and State Service of Migration (except for the functions of external migration, which are now the responsibility of the Foreign Ministry).
In her comment to CABAR.asia, Cholpon Mambetalieva, chief specialist of the office for social services to PWDs, ministry of health and social development, said that the merger of the two agencies could have a strong impact on further life of children with cerebral palsy. Even for the worse.
According to her, the ex-ministry of social development has been trying for a few recent years to assign a local centre to a child with cerebral palsy, their parents or an adult with disability so that they could enjoy social services there. They want to provide such people with a comfortable environment, with nearby centres providing qualified social services to them.
"Moreover, we developed assistance projects that included provision of children 'with special needs' with comfortable multifunctional wheelchairs (so that a child could sit during the walk), verticalizers (so that a child did not lie all the time, but could stand from time to time), comfortable orthopaedic shoes and even diapers," Mambetalieva said.
According to her, they were planning to implement all those plans and introduce all expenses to the budget in phases. However, the merger of the two agencies hinders the process as all decisions must be agreed with the health ministry.
"Medicine has never dealt with such issues, it has always been the priority and task of the social protection agency. But taking into account the fact that the decision on the merger of the two ministries has been approved already, we will try to work in a given format. However, what it will look like when we are in the same boat remains to be seen," she said.
According to Mambetalieva, the office had earlier prepared calculations and projects to create nine rehabilitation centres with state participation. They were planned to be opened in every region of Kyrgyzstan. However, these activities are being suspended. According to the government, there are no funds to implement these projects.
As a result, the government structure was reorganised, and some agencies, services and offices became subordinated to relevant ministries.
Thus, after the reform, Kyrgyzstan became to have the ministry of health and social development, which joined the ministries of health, social development and labour. In addition, it now includes the Social Fund, Compulsory Medical Insurance Fund (FOMS), and State Service of Migration (except for the functions of external migration, which are now the responsibility of the Foreign Ministry).
In her comment to CABAR.asia, Cholpon Mambetalieva, chief specialist of the office for social services to PWDs, ministry of health and social development, said that the merger of the two agencies could have a strong impact on further life of children with cerebral palsy. Even for the worse.
According to her, the ex-ministry of social development has been trying for a few recent years to assign a local centre to a child with cerebral palsy, their parents or an adult with disability so that they could enjoy social services there. They want to provide such people with a comfortable environment, with nearby centres providing qualified social services to them.
"Moreover, we developed assistance projects that included provision of children 'with special needs' with comfortable multifunctional wheelchairs (so that a child could sit during the walk), verticalizers (so that a child did not lie all the time, but could stand from time to time), comfortable orthopaedic shoes and even diapers," Mambetalieva said.
According to her, they were planning to implement all those plans and introduce all expenses to the budget in phases. However, the merger of the two agencies hinders the process as all decisions must be agreed with the health ministry.
"Medicine has never dealt with such issues, it has always been the priority and task of the social protection agency. But taking into account the fact that the decision on the merger of the two ministries has been approved already, we will try to work in a given format. However, what it will look like when we are in the same boat remains to be seen," she said.
According to Mambetalieva, the office had earlier prepared calculations and projects to create nine rehabilitation centres with state participation. They were planned to be opened in every region of Kyrgyzstan. However, these activities are being suspended. According to the government, there are no funds to implement these projects.
Editor: Natalia Lee
Photo: CABAR.asia
Photo: CABAR.asia
This publication was produced as part of the mentorship programme under the Development of New Media and Digital Journalism in Central Asia project delivered by the Institute for War and Peace Reporting (IWPR) with support from the UK Government. It does not necessarily reflect the official views of IWPR or the UK Government
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