Children with Disabilities: Social Challenge or Opportunity to Unite and Improve?

KYZYLORDA – Around the world, children with disabilities are often locked away in institutions and forgotten. As conditions in these institutions are often poor, many children never make it to adolescence. Those who do are often condemned to a lifetime inside the walls of an institution, simply because they have a disability. Children with disabilities are rarely eligible for foster care in countries where this practice is available and parents who want to keep children with disabilities almost never receive any help or support. Governments and international donors spend millions worldwide building and rebuilding these institutions for children with disabilities, when instead they should be supporting families, foster care and adoption, not to mention community services and education.

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Assel Nauryzova, 21 years old, and her custodial mother Balmeken Nurdildayeva

Many children with disabilities are thought to go unregistered because of the stigma and discrimination attached to their disability. Children with disabilities who are not institutionalised are frequently kept in the home and are severely limited in their opportunities for education and integration with society. It’s a lucky few disabled children who have morally strong parents who will provide them with the love and care they need.

There are approximately 147,000 children with disabilities registered in Kazakhstan, of which more than 42,000 live in institutions for children with disabilities. More than 18,000 of them come from disadvantaged families.

There are more than 20 institutions in Kazakhstan for children with special needs. While these institutions provide for children’s basic needs, children in many of these institutions are isolated from their families and communities and unable to participate in social life.

The Kyzylorda Regional Institution for Children with Disabilities takes care of 162 children, including 117 from Kyzylorda region and 45 from Aktobe oblast, as Aktobe doesn’t have its own institution.

2012 was a good year for these children, as in August 2012 the institution added a new building with 200 places for children with disabilities and where all special and social services are fully provided to them.

“I have been working in this institution for eight years and I believe this: Time is needed before our society sees a child with a disability as a child first, a child who lacks parents and care and needs love and attention just like other kids. But this change in perception will not just come on its own. State and local organisations working for the children’s best interests need to consolidate their efforts on every level to make this change happen sooner”, says pediatrician Balmeken Nurildayeva.

Parents give children with disabilities to institutions due to low public awareness of the issue, poor educational support and limited access to treatment services and care for these special children. Some parents see institutions as the only option they have.

“The main aim of our staff is to find the parents or relatives of abandoned children with disabilities. Otherwise, when the child reaches 18 years old, he or she will be transferred to an institution for adults where they will stay for the rest of their lives in isolation and exclusion”, says Aida Talgat, a social worker at the Kyzylorda Regional Institution.

The most common disabilities among children in institutions are neuro-psychiatric disorders and congenital anomalies (72 percent), most of which are diseases of the nervous system (34 percent), 20 percent of them being children with cerebral palsy. There are also many children with special needs due to other disabilities, learning difficulties or other disadvantages.

When I visited Kyzylorda Regional Institution, I met the lovely Sara Yermekova, who has a congenital clubfoot. A clubfoot, or congenital talipes equinovarus (CTEV), is a congenital deformity of the foot. Without proper treatment, individuals afflicted with CTEV are often forced to walk on their ankles or on the sides of their feet.

Obviously, it was difficult to look at abandoned children with disabilities. When Sara noticed my reaction she said simply, “But I am alive”.

There are, of course, stories of children who found happiness by being adopted. Assel Nauryzova, 21 years old, was adopted by Balmeken Nurdildayeva, a pediatrician who works at the Kyzylorda Regional Institution. Assel has a mild mental deficiency. She was found on the street in March 1991, by police when she was three months old. At the orphanage her given name was Alfiya and her surname was Unknown. Assel was transferred to an institution for children with disabilities in 2008 and was adopted by a doctor in 2010. Her adoptive parents say Assel is a responsible, kind and honest girl who cares for her two nephews, the sons of Ms. Nurdildayeva’s oldest daughter.

The most interesting part of Assel’s story is her participation and success in the Special Olympics World Summer Games, held June 25 to July 4, 2011, in Athens, Greece. Assel played on Kazakhstan’s Special Olympics basketball team.

More than 7,000 athletes with intellectual disabilities from nearly 180 nations—including more than 1,350 athletes and 1,152 coaches from Europe/Eurasia—participated in the event, demonstrating courage, showing their skills and developing friendships from all over the world.

The Astana Times asked Assel about her new family, her achievements in basketball and about her future plans.

How do you feel about your new family? Did you have any difficulties during your first days with them?

I am so happy I was adopted by Balmeken-mother and actually I did not have any problems at home, because everyone in the family is so nice and ready to help me if anything is needed.

How do you usually spend your day?

Well, nowadays I live with Dana and her family. Dana is the eldest daughter of Balmeken-mother. She is married and has two lovely sons whom I take care of when both the boys’ parents are at work. I accept these children as if they are my little brothers. I like to help Dana with housework and being involved in family activities, such as celebrating birthdays and other holidays. I also like drawing when I have any free time.

Assel, I’ve heard that you’re good at basketball. How long have you been playing basketball?

As far as I remember, I started when I was nine years old. Our regional team used to take part in cup competitions for children with disabilities at national and international levels. Athens in 2011 was amazing. We were together with so many children from different countries. Greece, the first foreign country I visited, will stay in my heart for a long time.

How do you imagine your future?

I could not graduate school due to my disease. However, my family always supports me and that is very important for me. I have a dream to sew lovely dresses for girls who live in institutions.

Do you blame your birth parents for being abandoned?

No, I have never felt abandoned, I have always felt special. My new parents made me feel special.

Despite the struggles they have faced since early childhood, abandoned children with disabilities keep on believing that one day new parents will come to adopt them.

To help make these hopes come true, we must undertake some large tasks, seriously and urgently. We must improve health care and we must make information about disabilities more accessible, because no government strategy can fix this problem as long as our society is closing its eyes to these issues.

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