OPPOSITION FIGURE PRESSES ARMENIAN STATE ON CEREBRAL PALSY CARE
By Naira Melkumyan
Institute for War and Peace Reporting IWPR
CAUCASUS REPORTING SERVICE, No. 602
August 4, 2011
UK
Much more needs to be done to stop children being shut away at home
for lack of treatment and educational opportunities.
An opposition politician in Armenia is urging the government to do
more for children with cerebral palsy, saying many are isolated by
having to stay at home.
Anahit Bakhshyan, a member of parliament from the opposition Heritage
Party, accused the authorities of ignoring parents whose children have
cerebral palsy, and of failing to give them the assistance they need.
Bakhshyan said there was plenty of money in the government’s budget but
it was not being used effectively. For example, the welfare benefits
paid to people with cerebral palsy were so small that they did not
even cover the cost of shoes.
“The rights of people in this country are not protected in general,
and the rights of the disabled, as vulnerable members of society,
are violated most of all,” she said.
Doctors say early diagnosis and treatment of cerebral palsy are
essential, but parents often keep children at home for fear they will
face discrimination and bullying.
Arevik Mirzoyan’s 16-year-old son Manvel has cerebral palsy, and she
has become an activist pressing for better state provision. Now she
has got Manvel into a mainstream school.
“I didn’t have any more children for 12 years; I just cared for him
– he has serious muscle coordination problems, he’s had operations,
but it’s impossible to change things,” she said.
“Many people keep their children at home and conceal the problem. It
was hard at first, but the Bridge of Hope organisation helped me and
we managed to break the stereotype. My son became the first child
with this condition to go to school. Now he is in the ninth grade of
an ordinary school. He has caring friends who help him and whom he
can talk to, which is very important for me.”
Hasmik Ghukasyan of the World Vision organisation said there was a
common prejudice that children with cerebral palsy could not study
at mainstream schools.
“In a programme funded by USAID which ended in June, we found 73
children in Armenia who had been taken out of school because of their
disability, who barely leave their homes, and who aren’t placed in
children’s homes or schools,” she said.
Disabled children in Armenia attend 26 special schools and 65 inclusive
ones where they study alongside other children. The education ministry
plans to ask parliament to consider turning disabled-only schools
into integrated education facilities as well.
Bakhshyan said the government must stop excluding disabled children
from mainstream schools.
“An everyday environment changes them, whereas a special school just
increases exacerbates their problems,” she said. “Mainstream education
must be organised so that it meets the specific requirements of these
children and takes their potential into account. That’s the point of
integrated education.”
Karine Sarbekyan, who heads the mother-and-child department at the
health ministry, acknowledged that children with cerebral palsy were
commonly kept at home in rural areas, in particular.
“No one knows about them because society doesn’t have the right
attitude to them. The parents often hide them away or isolate them.
We’re still a long way off European values, even basic human values,
in this regard,” Sarbekyan said. “But the state is definitely trying
to work in that direction with its programmes.”
Bakhshyan said that a decent education was no guarantee that someone
with cerebral palsy would find work as an adult.
“When I worked as head of Yerevan’s school no. 27, we had a child
with cerebral palsy who finished school and went on to the humanities
university. But sadly, he’s now sitting at home and no one will give
him a job, even though he’d be able to apply his skills,” she said.
Deputy labour and social affairs minister Jemma Baghdasaryan said
the government was trying to reshape policies to bring them into line
with international conventions governing the rights of the disabled.
“We are working to ensure that people with special needs enjoy equality
with everyone else, and to help them integrate into society,” she said.
Yerevan has two treatment centres: the Children’s Rehabilitation Centre
and the Arbes Centre, which also has six branches outside the capital.
Laura Movsisyan, head of medical services at the Children’s
Rehabilitation Centre, said 70 per cent of the children under
observation there had cerebral palsy.
Welfare provision for the 7,891 people registered with cerebral palsy
in Armenia is less than generous. Children get around 40 US dollars a
month in benefits, and if they are under seven they qualify for free
medical treatment, which can be extended to older children if proof
of disablement is furnished.
Children with cerebral palsy also have the right to go on an annual
paid-for trip to the spa town of Jermuk. The government does not,
however, cover the costs of rooms with hot water or en suite bathrooms.
Parents say they find it hard to claim the trips, and healthcare
staff are obstructive.
“No one told me I had the possibility of taking my son for treatment at
a sanatorium,” Rosa Grigoryan, who has a five-year-old with cerebral
palsy. “When I found out, I asked the [health] ministry about it,
but they told me rudely and brusquely that there weren’t any places
available, and that I’d need to fill out an application. I filled it
all out and we did get a place. That means there were places available,
so why did they have to treat me like that?”
Sarbekyan said the government was unable to meet the demand for places,
but was now expanding the programme.
Naira Melkumyan is a freelance journalist in Armenia.