"I'm not afraid to die. I'm afraid of what will happen to my child when I'm gone." I will never forget when the mother of a child suffering from autism uttered this sentence to me. It was as if all of her despair and hopelessness gathered in those few words.
Autism, like Down syndrome, is a permanent disorder. There is no cure. Those affected grow up physically but mentally remain at a child's level, and parents are forced to take care of them for the rest of their lives. To bathe, feed, change their clothes, and take them to the toilet for the rest of their lives.
Besides, in order to receive modest disability allowance from the state, every two years the parents are forced to prove that their children are ill.
Mihajlo is 16 years old. He has autism and Down syndrome. His mother Branislava is unable to work because Mihajlo is at the level of a two-year-old child and needs permanent care.
In order to receive 10,000 dinars in state assistance, Branislava must bring Mihajlo before a commission once in two years, which re-evaluates his medical condition. As if there can be any changes at all, as if there can be some improvement. So every two years the state reminds Branislava again and again that she has a sick child who will never recover and all this to receive disability allowance of 10,000 dinars per month (85 euros).
"That's not the only absurd thing. Under the Disability Social Assistance Law, my son is only entitled to that one type of allowance: for another person providing care and assistance. Although he is at the level of a two-year-old child, his physical disability is assessed and accordingly he receives a certain percentage of the allowance. Mihajlo's physical damage is estimated at 70 percent, so he's not receivng a full allowance, but only 10,000 dinars," Branislava Dedic explains.
The last time she brought her son before the commission, they met a boy who has 100 percent physical disability and who also has to prove this once in two years. Branislava photographed them to publicly prove the nonsensical nature of a cruel bureaucracy that the state drags them into.
"We are endangered enough. The only thing worse would be to keep quiet about our children's rights. They will never get better. It is a genetic disorder and the older they are, the more severe it gets. Mihajlo and I took a walk the other day, and he sat in the middle of the street. I didn't have the strength to lift him up. All I could do is sit with him and cry in misery," Branislava tells us.
She also warns of another problem that's about to occur.
"The Parent-Caregiver Law is on the verge of adoption in the Assembly. Under this law, parents of children with permanent disabilities will be entitled to a pension once they have been in the role of a permanent caregiver for 16 years. However, that law's condition is that the child is 100 physically disabled, which is absurd. Being mentally challenged and unable to use the toilet on your own doesn't mean someone is physically challeged. The state is showing a complete lack of empathy towards us. We are forgotten, pushed aside, pushed into a corner. But we will not give up the fight for our rights," Branislava concluded.