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article image'Abandoned': Bosnia's forgotten disabled children and families

By Rusmir SMAJILHODZIC (AFP)     Feb 28, 2020 in World

Children with hands bound together and tied to a radiator, some in tears -- harrowing photos from inside an institution for disabled youth have shocked Bosnia and shed light on the lack of support for special-needs kids and their families.

The photos from the public institution outside Sarajevo were first revealed by an opposition lawmaker in November, triggering street protests and outrage over the inhumane treatment.

A probe is under way and the director of the home has been dismissed.

But some 3,000 other minors live in such institutions, isolated from society and often in grim conditions, according to the NGO Sumero, which helps youth with disabilities.

These centres are a last resort for parents who are left to fend for themselves in one of Europe's poorest countries, where the most help they can hope for is a monthly state allowance of 75 to 200 euros ($82-$218).

Muamer Kulelija, a 41-year-old supermarket employee in Sarajevo, is well acquainted with the difficult choices such families face.

His brother has a mental disability and has spent 20 years living in the centre under investigation. He was sent there because his family was unable to provide proper care at home.

Kulelija says the institution suffers from a dire lack of resources and poor management. There are reportedly only some 30 staff responsible for the direct care of 350 children in the centre, which refused AFP's requests for comment.

"When I once reacted and questioned the competence of the staff, they threatened to kick my brother out," Kulelija told AFP.

Today he is also struggling on a second front: his 10-year-old daughter has severe hearing loss, a diagnosis it took doctors two years to reach.

Ilhan's mother has been unable to go back to work because her 17-year-old son needs round-the-c...
Ilhan's mother has been unable to go back to work because her 17-year-old son needs round-the-clock care
ELVIS BARUKCIC, AFP

"They told us that she could hear well but that she was lazy," he said.

Aleena is entitled to 280 euros ($306) every three years for hearing aids, but the devices cost at least 1,300 euros each.

- 'Live and die isolated' -

Disabled children in Bosnia are "born, grow up, live and die isolated, on the margins" of society, explained Aleksandra Ivankovic, a legal expert on their rights.

According to the UN children's agency, they are "one of the most marginalised and excluded groups" in a country whose health and education services are "not adequate".

While there is no official data, UNICEF says 6.5 percent of Bosnian children between the ages of two and nine are estimated to be disabled.

Many parents want to keep their children at home but the lack of public support makes that option extremely trying -- financially and psychologically.

Mirsada Begovic, 52, has been trying for years with other mothers to open daycare centres that would give parents a break.

No such centres exist in the Sarajevo region, home to 400,000 people.

Like many mothers in her situation, Begovic is unable to work because she devotes all day to her son Ilhan, who suffers from severe motor and cognitive disorders.

The 17-year-old has never spoken. But he can walk thanks to the hours of daily exercises his mother helps him with.

Music and art therapy are offered at one of the few centres in Bosnia specialised in caring for chil...
Music and art therapy are offered at one of the few centres in Bosnia specialised in caring for children with disabilities
ELVIS BARUKCIC, AFP

"It's very difficult, you have to be with the child 24 hours a day," said Begovic, whose family relies on income from her husband's car battery shop to fund basic treatments.

- Parents unite -

"The mental, physical and financial exhaustion" of these families who are "abandoned by the state" is huge, said Ines Kavalec, the president of an association called "Give us a chance".

More than 70 percent of couples with a special-needs child end up divorcing, she added.

Her organisation provides psychological support and practical help to 600 families in the Sarajevo area, offering windows of childcare so that parents can take a break.

They can "see a doctor, go to the cinema, see a friend, play sports," said Kavalec, whose teenager has cerebral palsy.

Other parent-run associations also try to fill the gap. One such group, named Colibri, was founded by Saudin and Aida Hrnjic, whose seven-year-old son Anur is autistic.

After learning about their son's condition, the parents quickly discovered the limits of the public system.

It "offers you nothing" except a diagnosis, said the 49-year-old father.

Hrnjic gave up his career as an industrial designer to take care of Anur and later founded Colibri, which organises workshops for special-needs children and offers a community for parents.

"Our children deserve a little charity  that's all " says the father of a child with ...
"Our children deserve a little charity, that's all," says the father of a child with autism
ELVIS BARUKCIC, AFP

"There are a lot of parents who are selling off all their possessions, spending everything they have on various methods of care," said Hrnjic.

"Our children deserve a little charity, that's all," he continued. "But the state doesn't bet on them".

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