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Are Older Children with Severe Developmental Disabilities to be Discharged to Die?

June 4, 2014, 16:30 4303 Author: Albert Pavlov, translated by Oxana Burns deti.zp.ua Due to the lack of children's hospice unit the seriously ill children from the "Solnyshko" orphanage are transferred to children's homes where financing per child is half as much and qualified medical staff is not available

Due to the lack of children's hospice department the seriously ill children from the "Solnyshko" orphanage are transferred to children's homes of the Department of Social Welfare, where financing per child is half as much and there are no qualified medical personnel. Health Department of Zaporozhzhye region pretends not to notice the problem

The "Solnyshko" orphanage in Zaporozhzhye is home to about 60 children with special needs, including about 30 children with incurable (untreatable) pathology who receive palliative care. Some of these children receive a special tube feeding which requires round-the-clock care of qualified personnel, and sometimes emergency resuscitation actions.

On reaching the age of 4 years, the kids from the children’s home "Solnyshko" used to be transferred to the orphanage located in the village of Kalinovka, Chernigov area, under the charge of the Department of Social Security of Zaporozhzhye Regional State Administration. This is a critical moment in their lives. Many incurable children died during their first months in the new orphanage. The reason is the lack of qualified medical personnel (there is still no pediatrician in Kalinovka while there are 10 pediatricians in the "Solnyshko"). Another factor is poor financing of the Kalinovka orphanage which is 2-3 times less compared to the "Solnyshko" and as a result - lack of staff. To make it even worse, we can add distance from the Kalinovka orphanage to the district hospital in Chernigovka (40 km on rough roads) and low-level medical assistance rendered in the Chernigov district hospital (this fact is confirmed by the footage from the BBC film “Ukraine’s Forgotten Children”, where British journalists could not find nurses in the department with a gravely ill child for quite a long time).

Fortunately, the Social Security Department realized the problem, and after the death of several seriously ill children in 2011 they stopped accepting new incurable children from the "Solnyshko" to Kalinovka. A few meetings of the representatives of Social Welfare Department and Health Department to which the "Solnyshko" is subordinate took place. The Department of Social Welfare adheres to the following position: incurable children assistance unit (hospice) has to be set up in the "Solnyshko", as this orphanage has all the necessary conditions for hospice unit functioning (more than 600 people in staff, 10 pediatricians, city location, hospital costs are about 10,000 UAH (833 US dollars) per one child a month, while the staff in Kalinovka is only 120 people, no pediatrician, remoteness from the hospital, the costs per a child are 5,500 UAH (458 US dollars) per month. The “Happy Child" supported the Department and also proposed to create a hospice unit within the "Solnyshko". We have expressed our position in two appeals to the Health Department of Zaporozhzhye region.

But, unfortunately, telling arguments and risk of death of children without decent care can convince neither Health Department officials nor the leadership of "Solnyshko" in the need to keep incurable children over 7 years in this children’s home. We can do no more than guess why they act like this, but it seems to us, that, first of all, they are afraid to have death statistics with consequent investigations to be carried out, also they are reluctant to bother themselves with a bad contingent. Another reason is their desire to turn the "Solnyshko" into a rehabilitation center; in this case, its closeness to the hospice unit will unlikely make it a more popular place. But how are all these reasons consistent with children's right to life, to qualified assistance and suffering alleviation?

The response from the Department of Health, which we received, contained a reference to a bunch of laws and we were informed that a hospice unit is impossible and inexpedient to create as part of the "Solnyshko". They admitted that the problem needs to be addressed, but gave no answer where the incurable children from the "Solnyshko" will be sent to upon reaching the age of 7. As a result, attempts to "push out" such children continue, but not to the village of Kalinovka, but to the Zaporozhyzhe children's boarding house located in Velikiy Lug and the Kirovo nursing home.

It turns out that children die not without any good reason but in compliance with the laws of Ukraine?

It appears that Department of Health officials and institution directors care more about good statistics and death rate absence than alleviating the suffering of poor children.

The "Happy Child" Foundation addresses to the region authorities and personally to the Governor with a request to make all necessary changes in the Charter of this children's home and take other required measures to enable incurable children spend the last years or months of their lives not in pain but in decent conditions. After all, children’s growing up is not a reason to sign their death warrant.

We sincerely hope to start a constructive dialogue regarding establishment of the hospice unit.

Albert Pavlov,

Director of "Happy Child”, www.deti.zp.ua

info@deti.zp.ua +38 066 513 34 35

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