New programmes improve care and support for children living with disabilities in Georgia
TBILISI, Georgia, 24 July 2012 – Two-year-old Ioane Gelashvili is like any boy his age – full of energy, laughter and affection. He also happens to have Down's syndrome, a condition that, until recently, would have ensured his isolation and stigmatization.
"When Ioane was born, we quickly realized what his condition was and did our best to look after him," said his grandmother, Lali Gelashvili. "We needed help though, as clearly Ioane needed more specialized care. Then, last summer, social services told us about the First Step early intervention centre for children with disabilities here in Tbilisi.
“Since then, a home teacher has been visiting us and working with Ioane twice a week, and I come to the centre here with him once a month for a check-up. The results speak for themselves," Ms. Gelashvili said.
Supporting children with disabilities
"When we first saw Ioane some nine months ago, he was practically immobile, just lying down, not even able to sit up, never mind stand up. He didn't play or interact at all, and he wasn't eating properly," said occupational therapist Taka Nozadze.
"Now, he can run around, understand and follow basic instructions, eat independently and – very importantly – he has learned how to play and interact with his brother and sister and other family members,” Mr. Nozadze said. “The attitude of the family was always positive, but with the right help their involvement has definitely increased over time. Adequate support is essential not just for the child, but for the whole family too."
Yet lack of early diagnosis and treatment of disability in Georgia has hindered appropriate and timely responses. The first child development centre was established in 2009, with a mandate to improve and strengthen proper diagnosis of children with developmental delays and disability.
A second early intervention centre opened in Tbilisi in September 2011, managed by the non-governmental organization First Step Georgia under a partnership initiative with the Ministry of Labour, Health and Social Affairs, supported by UNICEF and USAID and others. With 60 children under age 6 registered so far, the centre offers psychosocial, medical and educational support, with home visits an integral part of the services.
Still, there remains a long way to go. In the absence of adequate information, few parents seek support early enough, tending to wait until their child's disability is more obvious.
Reforming national child care
Centres such as the First Step early intervention centre are part of a reform process being undertaken in the national child care system, which aims to phase out large Soviet-era institutions and ‘boarding schools’ for children with special needs. These institutions provide food, shelter and rudimentary education but nothing in the way of specialized care or support.
The past lack of services – as well as stigma attached to disability – has meant that affected children and their families have been left to fend for themselves.
But now, the government, with support from its partners, is developing viable alternatives such as foster care, small group homes and social services aimed at preventing family separation. Day care and early intervention centres for children with disabilities are a key element of these services. There are currently four early intervention centres in the country, managed by NGOs and partly state funded, principally in the form of vouchers for the most vulnerable children. Ioane’s care, for example, will be fully covered by the state until at least age 3.
However, while the number of children in state institutions has decreased dramatically since 2000, and the number of institutions has decreased over the same period, there remain hundreds of children with disabilities in ‘boarding schools’.
"There are undoubtedly still challenges," said First Step Georgia Director Maguli Shaghashvili. "For example, we've only had one case of a foster family getting state support for early intervention, as this is usually just granted to the biological family. It's essential that foster families get the support they need. The concept of small group homes still needs to be further developed too."
As for Ioane, his grandmother is confident about his future. "We have great hope that in another year or so Ioane may be integrated into a normal preschool," Ms. Gelashvili said. "But whatever happens, at least we know that he's getting maximum assistance to be able to lead as normal a life as possible."