Truthmeter.mk: Thirty Children with Cerebral Palsy Live In Isolation in Ohrid, the State Is Silent

Children with cerebral palsy in Ohrid live in complete isolation. They do not have any day care centers. Parents complain that their children are discriminated against and excluded from society, Truthmeter.mk writes.

Author: Sonja Rilkovska

Children with cerebral palsy from Ohrid face total isolation. Excluded from the educational process and social life, fully disconnected, they are locked in their homes. There is no daycare center in the municipality for this category of children, the parents complain.

They say that for decades they have been asking the local self-government to provide them with space so that an appropriate daycare center can be built for this category of people.

The previous mayor promised them that they would have their own area, but with the change of government, this becomes uncertain.

The previous mayor promised us, but now we have a new local government. We also addressed the new mayor, he said that he will help us from the bottom of his heart to realize such a project, but we are still waiting to be given a designated area. We do not have any information, but it is crucial to get an area for our children to be able to leave home, because no one deserves to live in isolation, Vesna Gabeloska, a parent of a child with cerebral palsy, told Truthmeter.

Children with cerebral palsy face architectural barriers and countless other problems. There are no accessible toilets, pedestrian paths in the city, no beach, and no playgrounds. It is difficult to reach the health service because there are stairs everywhere without access ramps, say the disappointed parents. Thus, for example, in the hospital on the second floor is the children’s ward, and the elevator is almost always broken.

That is a high degree of discrimination. We have the right to health care, and we cannot exercise it. It can all be solved in a simple way – you only need good will, awareness and conscience. A room for these children can be equipped on the ground floor and I know that the doctors will not have any problem when it comes to such a child, to go there, examine them and give them appropriate therapy, says Gabeloska, who has been part of several NGOs from Ohrid, working in the field of improving the rights of people with cerebral palsy.

Children with cerebral palsy cannot exercise their fundamental rights

Children with cerebral palsy are deprived of their fundamental rights – primarily, inclusion, which means providing equal opportunities for children with disabilities and their active participation on an equal footing with all other children.

The main problem is that the society did not realize that there is a special category of citizens, for whom, as for all others, conditions for normal functioning should be provided. The amount of the special allowance is the same for everyone, both for those who have children with light form and are completely independent, but also for those who have children with severe form who need help literally 24 hours a day. There are children, whose mothers hold their heads while they sleep, so that they can breathe, otherwise the child can suffocate, says Gabeloska.

The special allowance for children is 5000 denars for everyone. The parents react that in the neighboring countries the problem is solved completely differently and that only in our country, even the wheelchairs, which are necessary for the children, the parents buy them themselves because the Health Fund does not cover the costs.

Throughout the pandemic, the government has not set aside a separate package of measures for families with children with disabilities. In addition, we no longer have fund wheelchairs suitable for children with severe cerebral palsy. There used to be, but after the change of government, I do not know what happened. I bought it for my daughter from Serbia and it cost me 900 euros. Some parents are not able to buy it, so the children can not leave the home at all, says Gabeloska.

There are laws on paper, in practice there is no help

In March 2021, Deputy Minister of Labor and Social Policy Enver Hussein, on Cerebral Palsy Awareness Day said:

The new Law on Social Protection introduced new rights that were not foreseen, such as the right to monetary compensation for disability, which used to apply only to people with the most severe physical and sensory disabilities, and is now extended to people with severe disabilities or profound intellectual disability. Then, personal assistance services and home help and care services, rehabilitation and reintegration of people facing social and / or health problems, psycho-social support, therapeutic work, occupational therapy, support for the acquisition of job and employment skills, reintegration and independent living.

The parents, on the other hand, say that it is only written on paper because in reality nothing has been achieved. The parents say that the engagement of personal assistants, help and care in the home was not realized and that last year the municipality was supposed to train personal assistants, for which a budget was allocated, but to date, none of that has been realized.

There is also no rehabilitation. The autism center has opened, but there is nothing for cerebral palsy, we have been ignored to the maximum. I hoped that they would give space and there we would carry out rehabilitation according to new methods. According to the convention, the state is obliged to open rehabilitation centers, smaller, but more in number, says Gabeloska.

There are about thirty children with cerebral palsy in Ohrid who need socialization.

The EC notes little progress in improving the rights of persons with disabilities

Little progress has been made in improving the rights of persons with disabilities. A mechanism has been set up within the ombudsman’s office to monitor the implementation of the Convention on the Rights of Persons with Disabilities, according to the EC Progress Report on North Macedonia

The National Coordinating Body for the Implementation of the Convention met regularly, but its powers and capacity to influence decision-makers in state structures are still weak. People with disabilities continue to face significant discrimination, both direct and indirect, due to infrastructure disruptions, lack of information and services, discriminatory behavior and social exclusion. The ombudsman received 37 complaints of discrimination against children and adults with disabilities in 2020, according to an EC Report.

According to the Convention on the Rights of Persons with Disabilities, states are obliged to provide equal opportunities and rights for children with disabilities.

Article 7 of the Convention on the Rights of Persons with Disabilities obliges states to provide children with disabilities with all human rights “on an equal ground with all other children”. The decision should be based on “the best interests of the child”. Article 9 provides for access by persons with disabilities “on an equal ground” to schools, information, the Internet and new information and communication technologies. Article 24 refers precisely to education, obliging states “not to exclude children and young people with disabilities” from the general education system “on the grounds of disability.” States have a duty to ensure “reasonable accommodation to the individual needs” and “effective individual support” of children with disabilities “within the general education system”, according to the Convention on the Rights of Persons with Disabilities.