Anna Kuznetsova presented a roadmap on palliative care prepared by the Office of the Presidential Commissioner for Children’s Rights.
The document comprises 18 items, including the creation of a register of diseases that require palliative care, a register of children who require such assistance, the training of palliative care professionals, as well as the drafting of standards to regulate the procedure for providing medical ventilators to families with children that require such care.
The Presidential Commissioner for Children’s Rights said that the system of palliative care for children in Russia must take into account all forms of medical assistance for children and teenagers at public and private medical facilities and at home. Children and their parents must not be left to fend for themselves; they need guaranteed, quality and affordable assistance.
Children’s Rights Commissioner from St Petersburg Svetlana Agapitova reported on her experience in the field, saying that they had developed a cross-disciplinary system for providing palliative care. The city authorities have also adopted a law on assistance to children who need artificial respirators (artificial lung ventilation machines).
At the same time, Ms Agapitova pointed out that 27 percent of children receiving such assistance in St Petersburg have no access to schooling. The commissioner proposed that individual schooling plans be developed for such children comprising several subjects a given child likes.
The meeting participants also discussed the development of a system of tutorship as the most effective form of post-boarding school guidance for orphans. Anna Kuznetsova proposed a system for interaction between all agencies that are responsible for the social adaptation of orphans.
This initiative has been added to the roadmap her office has developed. She said that the analysis of the situation had revealed the absence of a coordinated approach to this issue. The proposed roadmap is designed to streamline the package of measures that can be used to help orphans adapt to adult life.
Regional commissioners reported on their experience in this field. For example, a social card of boarding school graduates created in Kamchatka Territory includes individual guidance plans to be complemented with contracts on the provision of this service. This plan has been effectively applied in the region.
The provision of housing to orphans remains the most painful issue about which several commissioners spoke at the meeting. Nizhny Novgorod Region Commissioner Margarita Ushakova reported on the results of monitoring the protection of orphans’ housing, while Commissioner Lyubov Zyabreva spoke about problems in the provision of housing to orphans in the Novosibirsk Region.
“We have a common goal, which is to make our children happy, and the experience in this difficult undertaking each of us has accumulated can and should be shared,” Anna Kuznetsova said in her closing remarks at the meeting of the Coordination Council of Children’s Rights Commissioners.