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People with disabilities need community living, not institutionalisation

Tamar and Judy Klein relax after baking pastries in Gurjaani (Photo by Ami Vitale)

People with disabilities in Georgia are often locked away either at home or in large-scale  institutions, prevented from living their lives to the fullest. Community based housing should be the norm, offering them the opportunity to  live independently and be included in the society.

Tamara first learned what a heartfelt hug was when she was 45. This was when she first entered a family-type environment. For many years she lived with 50 other people at state residential  institution in Dusheti, where according to the Public Defender, there is often violence between residents, inhumane treatment by staff, and the denial of support in exercising basic human rights. Now Tamara  knows how to give a proper smile. Tamara, Dato, Giorgi, Kristo, and few others have now also experienced the joy of being paid for the first time. They’ve discovered lots of things only late in adulthood: like owning a mobile phone, riding on public transport, or going to the hairdresser’s for the first time.

There are about 200 people in Georgia living in government facilities for the people with disabilities, and even more in facilities for people with mental health disorders. On top of this, thousands more are locked up in their homes, unable to get proper treatment and support.

Tamara at her job in a hospital near her home in Gurjaani (Photo by Ami Vitale)

Five years ago, a local advocacy and support group for people with disabilities, Hand in Hand, began to develop community based living as an alternative for people who live in large institutions, mainly adults with disabilities.

The organisation proposed that people living in larger institutions move into smaller, family-type, houses, with a maximum of five people in each. The aim is to teach these people to be a part of society, develop their skills, and become independent.

A major problem for large institutions is that they shelter large amounts of people with only one or few psychologists and psychiatrists to assist them. The only real tasks given to residents is to eat and sleep, following the institutions’ strict schedules. Food is cooked by the staff, with residents not involved in any of their daily living activities. They don’t have access to education, employment, or proper healthcare.

‘Unequal and degrading treatment’

The Public Defender described the challenges of people with disabilities in Georgia in his October 2016 special report.

‘The Public Defender believes that the institutional arrangement of specialised residential institutions, unadjusted infrastructure, shortage of specialist and supportive staff and their poor professionalism, lack of psycho-social services and contact with outer world and families cannot ensure the delivery of services tailored to individual needs of PWDs, thereby provoking gross violations of rights and unequal and degrading treatment of beneficiaries’, the report reads.

The Public Defender also writes that the state care system fails to protect these people from violence, to manage their behavioral difficulties, ensure their and the staffs’ safety, or prevent them from abusing alcohol.

The stigma of disability

Natia bakes pastries in Gurjaani (Photo by Ami Vitale)

Many adults living in such institutions have been there since childhood. But the problem is not only that of the government and large shelters. Many people are locked in their homes, which is the decision of their families.

Stigma for families of people with disabilities continues to be a challenge, and is often cited as a reason for parents’ reluctance to officially register the disability of their children. They believe that registration will complicate their children’s lives, and negatively affect their ability to find employment.

Evidence for the way people with disabilities are treated in Georgia can be seen as far back as the end of World War II. While in Europe, the disabilities of so many people from injuries sustained during the war was the impetus for the development of plastic surgery, in the Soviet Union, people were simply locked in their homes.

A better solution

The founder of Hand in Hand, Maia Shishniashvili, allocated her own house for the first trial group in Gurjaani, Eastern Georgia, five years ago. Nowadays, Hand in Hand provides community based housing for over 20 people with disabilities, including those with intellectual disabilities and mental health problems.

Tamara has been living in the family-type home in Gurjaani from the very first day it opened. She has a intellectual disability and used to live in a large institution. She was used to life in the shelter, and at first it was hard for her, but now she is happy.

She has a job at the local hospital in Gurjaani, where she helps with cleaning. When she gets home she helps her flatmates to cook dinner and take care of the dogs they have in the garden.

Most participants in the programme lived in large institutions for many years, and had to begin new life. It costs around ₾600 ($238) each a month to house people in these homes, with a maximum of six people living in one house. In the beginning one assistant stayed with the residents at all times, and nowadays part time, to help them to develop their skills and a daily routine.

Giorgi Aliashvili (Photo by Ami Vitale)

Giorgi, who now lives in a family-type house in Tbilisi, used to live in orphanage. After becoming an adult he lived in the streets for some time. Then he appeared in a large government institution before finally coming to this house, where together with his housemates, he cooks dinner, cleans the house, works on handicrafts, participates in various activities, and says that he has started a better life practically from a blank page.

Natia and Gocha decided to live together only after they discovered the community home in Gurjaani. Gocha used to protect Natia from violence in larger institutions. They fell in love there. Now they have two children. The state deemed the couple incapable of raising children and took them away. One of the children was sent to an orphanage, and another to foster family.

After a great amount of effort, the children both now live in one foster family also in Gurjaani, and Gocha and Natia visit them, but eventually, they would like to live with their children, with the support of an assistant, in one family. Natia is a good cook, while Gocha keeps busy with housework. They both help to make churchkhelas (Georgian sweets) in autumn, and use the money they make to buy presents for their children.

Natia, 35, poses with her husband Gocha, 52, at their home in Gurjaani, (Photo by Ami Vitale)

For its first three years, the community based living programme was in its pilot phase, but for the last two years it has become a well-recognised practice, which is why the organisation is urging the government to dissolve the large shelters and help to roll out community living instead.

The Hand in Hand project now has co-financing from the Open Society Georgia Foundation and the Ministry of Health.

According to the Institute for Development of the Freedom of Information (IDFI), people with disabilities make up 3% of Georgia’s population, around 120,000 people as of 2015. Up to 200 people are still staying in large residential institutions.

People with disabilities receive from ₾70–100 ($27–$39) depending on the category of their disability.

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