Braving the odds of disability and displacement: Jemal's story
May, 2012, Tbilisi
It is play time at the First Step-Georgia day care centre for children with disabilities. A group of about a dozen children of different ages – suffering from a variety of mental and physical disorders – are free to choose games or activities while teachers keep a watchful eye over them. Some race around excitedly on tricycles or wheelchairs, some play boisterously with toys, while others simply sit or lie silently, lost in their own thoughts.
One particular boy stands out somewhat from the rest. He is listening avidly to classical music on a transistor radio, occasionally pressing his ear to it as if to hear better, as he rocks gently back and forth. His expression is one of pure joy.
This is nine year-old Jemal Chulukhadze, who suffers from cerebral palsy and related developmental impairments. "Jemal adores music," says his grandmother, Zoia. "He has to have music wherever he goes – when we come here on the bus, we have to ask the driver to put the radio on. Or he listens to music on my mobile phone. Music really calms him down and makes him happy," she smiles.
Zoia has been bringing Jemal to the day care centre faithfully every day for almost four years, while his mother stays at home looking after his two siblings and his father (Zoia's son) tries to find occasional work. Most days he is unsuccessful.
Along with thousands of others, the family fled South Ossetia during the 2008 armed conflict between Georgia and Russia, and a few months later were housed in the Tserovani settlement for internally displaced people some 20 kilometres outside Tbilisi.
Cut off from their land and traditional source of income, life is hard for the Chulukhadzes. Zoia, for example, receives a monthly state benefit of 30 Georgian Lari (USD 18) – more than other family members since she is a widower – but this doesn't even cover her bus fares to and from the day care centre (Jemal travels free only because he sits on Zoia's lap).
Yet Zoia makes light of any hardship. "Well, it's true we manage on very little, and we don't have very much to eat. But doing our best for Jemal is really the most important thing. Seeing him make progress has been the biggest reward," she says with humbling modesty.
Giorgi Demetrashvili, programme coordinator of the day care centre, is unequivocal about Jemal's developmental progress, thanks in large part to his grandmother's commitment. "Initially Jemal had barely any motor skills, in fact he couldn't stand up unaided. He couldn't feed himself or communicate," he says. "Now he is much more mobile, more active and sociable, and can feed himself. And while he might not be able to speak, he can communicate through his own sign language."
"Zoia really fought for Jemal's rights through the municipality where they live, and obtained full state coverage to attend this centre. But this doesn't include transport," says Giorgi. "And we know of at least ten other cases of children with disability in Tserovani who aren't getting any assistance, mainly because of transport constraints," he adds.
Giorgi explains that the day care centre – currently catering for 46 children aged 3-18 – offers families an individual programme working towards specific goals, and a comprehensive educational programme for the children based on group work. "This is education in a very broad sense, providing support for a child's particular needs and helping to make them more independent," he says. "While there is some academic teaching – often with a practical focus such as dealing with money – there is also a big emphasis on so-called sensory education, learning about the senses and how to adapt better to the environment. Learning to eat healthily and more diversely – through experimenting with touch, smell and taste – is also very important."
The day care centre and neighbouring early intervention centre for children with disabilities 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, supported by UNICEF and USAID among others.
These centres are an important element in the ongoing reform of the national childcare system, which is geared towards deinstitutionalisation, providing alternatives such as foster care, small group homes and social services aimed at preventing family separation. The ultimate aim is that every child in Georgia grows up in a family environment – and as far as possible, with its biological family.
The number of children in state institutions decreased from 4,100 in 2005 to 220 in 2012 (of whom approximately 100 have disabilities), and the number of institutions decreased from 45 to 9 over the same period. Up to 700 children with disabilities still remain in special needs "boarding schools," which are also being phased out.
However, while there are now 24 day care centres across the country – with the government providing vouchers for the poorest and most vulnerable children – access to these services needs to be increased, according to Maguli Shaghashvili, director of First Step-Georgia. "In order to ensure the high quality of services, we have to co-fund each child through our own fundraising. State vouchers provide one third of the services. And those families who do not qualify for vouchers are in many cases simply not able to pay," she says. "Much remains to be done, too, to provide sufficient support for families fostering children with disabilities, and to further develop the concept of small group homes."
"Attitudes of stigmatisation and discrimination against people with disabilities may be changing in Georgia, but it's a slow process," says Giorgi Demetrashvili. "When we went on an outing to the zoo recently, our kids were looking at the animals, but everyone else was staring at our kids. And not everyone has a family member as determined as Zoia," he smiles.
"I will continue to do what's best for Jemal," says Zoia, shrugging off any praise, "even if it means coming here every day until he's 18. Then at least he'll have a chance of being able to take of himself when he's an adult."