Julija was born on February 3, 2012 in Belgrade.
She was diagnosed with Apert syndrome, a rare genetic condition.
Parents of children with disabilities in Serbia
are often advised and encouraged
to place their child in an institution.
Julija went to stay in Zvecanska institution on May 8th.
Two days later we went to visit her,
and nothing remained of that child who used to smile and coo.
She had a lost look in her eyes. She had visibly lost weight.
Parents of children with disabilities often do not have access
to services and support they need to care for their child at home,
and often they feel they have no other choice but to place the child in an institution.
The intention behind institutions was to provide children with specialized care.
But in reality, children are put in settings where they often face neglect,
they do not have access to individualized care,
and all of that can lead to their stunted physical, emotional, and intellectual development.
We met a four-year-old girl with developmental disabilities
who lived in an institution for the first 10 months of her life,
and now she lives with a foster family.
In the beginning, the neurologist's advice was to engage in as much physical contact with her as possible
so that she get used to being touched
because she has fears from being in the institution.
She didn't have physical interactions because there are many children there
and not every one of them could be attended to.
When we'd touch her little hands or feet, she'd retract like a turtle.
Would you ever decide to send her back to an institution again?
No.
She has made some progress with us.
It would probably cause her progress to revert.
We are helping her as much as we can, so I wouldn't.
I couldn't.
[A child's] progress is most frequently and most easily made within a family,
because a child needs a family.
Without the work that is being done with her, her progress will amount to nothing.
Every child, including a child with disabilities,
has the right to live with their families and in their communities,
and Serbia has introduced strong legal and policy measures to ensure this right is respected.
However, more concrete steps should be taken
so the children and their families have access to the support they need,
including access to healthcare in their community, inclusive education, and financial support when necessary.
Research in other countries has shown that investing in community-based services and support
is more cost-effective than investing in large-scale institutions.
Of course, having a sick child comes as a great shock to every family.
And in addition, what discourages you is that there is literally no one to help you.
Children are best raised with their families or in family-like settings.
Studies have shown that children who were moved from institutions into families,
they simply thrived.
Take for example, Julija.
Unlike so many children with disabilities who live in institutions, she gets the support and care she needs.
She simply has better opportunities to develop and to grow, a stark contrast to life in an institution.
Somehow it was always clear that when Julija is at home with us,
surrounded by everyone, she is one child,
and when she's in an institution, she's a different child.