Standing up to disability: Ioane's story
May, 2012, Tbilisi
Laughing with delight as he bangs on a toy drum, then running to give his grandmother a hug, two year-old Ioane Gelashvili is much like any boy of his age – full of energy, laughter and affection. Ioane also happens to have Down's Syndrome – a condition which at least until recently would have effectively ensured his isolation and stigmatisation in Georgian society.
"When Ioane was born, we quickly realised what his condition was and did our best to look after him," says his grandmother, Lali Gelashvili. "We needed help though, as clearly Ioane needed more specialised care. We didn't know where to turn, so we went to the grave of monk Gabriel in Mtskheta to pray for a miracle," she says, referring to the legendary 20th century eastern Orthodox monk renowned for his healing powers. "Well, unfortunately, it didn't work," she adds with an almost apologetic smile.
"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," says Lali happily.
Occupational therapist Taka Nozadze agrees enthusiastically. "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," she says. "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," says Taka.
"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," Taka adds.
Lack of early diagnosis and treatment of disability in Georgia has seriously hindered appropriate and timely responses. While the first Child Development Centre was established in 2009, with a mandate to improve and strengthen the capacity of the medical sector to properly diagnose children with developmental delays and disability, there is still a long way to go in terms of appropriate and effective early intervention. In the absence of adequate information, few parents seek support at a sufficiently early stage, tending to wait until their child's particular disability is more obviously manifested.
The second early intervention centre opened in Tbilisi in September 2011 – managed by the non-governmental organisation, First Step-Georgia, under a partnership initiative with the Ministry of Labour, Health and Social Affairs, and supported by UNICEF and USAID among others – is therefore making an important contribution to tackling this problem.
With 60 children aged 0-6 registered so far – suffering from a variety of disabilities and developmental disorders including cerebral palsy, Down's Syndrome and autism – the centre offers psycho-social, medical and educational support, with home visits an integral part of the services.
Centres such as this are part of the reform process of the national child care system, which aims to phase out large Soviet-era institutions and "boarding schools" for children with special needs, which provide food, shelter and rudimentary education, but nothing in the way of specialised care or support. The overall lack of services in the past – as well a general attitude of shame or stigma attached to disability – has meant that affected children and their families have been marginalised, left to fend for themselves. As a result, few have been able to develop to their full potential, becoming in turn a hidden generation of housebound, dependent adults.
In parallel, 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 disability 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, for example, will be fully covered by the state until at least the age of three – although thereafter his status, and his family's means, will need to be reassessed.
However, while the number of children in state institutions decreased from 4,100 in 2005 to 200 in 2012 (including approximately 100 children with disabilities), and the number of institutions decreased from 45 to 9 over the same period, there were still up to 700 children with disabilities remaining in "boarding schools" and only 81 in foster care, according to government figures.
"There are undoubtedly still challenges," says Maguli Shaghashvili, director of First Step-Georgia. "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," she says.