The social inclusion support organization – Hand in Hand was founded in 2011, at the initiative of Maia Shishniashvili. The small family-type dwellings for mentally ill adults over the age of 18 soon transformed from a social innovation into a successful practice. In 2016, they started to introduce the services of personal assistance too. The goal of the organization is to promote independent and pleasant lifestyles in a community of people with disabilities and to support inclusion. The fight for deinstitutionalization, the provision of family-type housing services and personal assistance based on the community of individuals with disabilities, and their empowerment has become one of the main activities of the organization.
Activism that started with thinking about the needs of a child
Maia Shishniashvili was lead to the activism in the field of people with disabilities by thinking about the needs of her own child. In the interview with us, she said that thinking about the future of her child and realizing that there were no services to deal with many challenges, persuaded her that there was a need for a change.
“I became interested in the needs of people with disabilities after having my child. The first signs started showing when he was around 1-2 years old. When he was 3, he was finally diagnosed, which finally explained his condition. At that moment I realized that he would be a person with disability for his whole life and would need support. I started thinking about and researching disability. I wondered what programs were out there, not only for minors but also for adults. All of us wonder the same question – what will happen when we’re no longer there for our children to support them?”
I didn’t think much about the childhood. I started thinking about his future right away. I found a solution – it was to start working to found an organization. Not everything happened all at once. Levancho was about 5 years old when I already knew what I wanted to do and how I had to approach my son’s future. I wanted for him to have the same support out there as he had at home. By 2010 me and some of my companions founded an organization and we set a goal to create a model of a living space that would be based on human rights and would serve a worthy service to people with disabilities that need support. We wanted for the beneficiaries to feel at home, in a natural environment, in a society – instead of isolated, as it had been until now.”
Hand in Hand – the first steps of the organization
The organization overcame many challenged since its foundation till now. Hand in hand is an innovator in the region, who, after the Baltic countries, was the first to introduce family-type housing, services, innovations for people with disabilities, so the team of the organization had to fight daily for the interests of beneficiaries, to realize their rights. The challenges were such basic rights as the right to manage one’s own pension, the be close to one’s children, to start a family, to be employed or the right to health. Inadequate funding for individual needs services for homeowners has become a particular challenge for service sustainability, and constant advocacy work has been required to increase it.
“In 2011, we opened the first house for people over the age of 18, who was already in need of such services. We took in the beneficiaries from such institutions in which the people with disabilities weren’t given any independence. Our initiative was innovation because we were the first to say that people should not be isolated, it is essential to live in the community and have access to family-type services.
This was a huge challenge, because no one thought that people with disabilities can live independently, accordingly to their interests and aspirations, be responsible for their own decisions. We would provide the adequate amount of support, that would be neither exaggerated nor lacking in any way.
At that time, people’s attitudes were drastically different. When they came over, they asked us if we had a cook, a doctor, a psychologist, because they couldn’t imagine how people with disabilities can live without such services. They were guided by stereotypical approaches because they were accustomed to it in large institutions. We managed to prove that this is possible and that it can be achieved with even a little support. The main thing is for the person, for whom the service was created, to make the decision. Often our model was presented as an opportunity for physical independence only, but the most important thing in achieving goals is independence, taking responsibility, and if you need support to achieve a goal, you can use a service that does not dictate what your decision should be,” – recalls Maia Shishniashvili.
The ongoing work over the years to increase funding is slowly changing for the better. Batumi and Senaki municipalities are involved in co-financing, which is a necessary condition for opening new houses and, consequently, releasing more people from institutions. As for personal assistance, service standards have been developed this year through the joint efforts of the Ministry and the non-governmental sector. These standards will make it possible to provide suitable services to all types of people with disabilities. However, this has not always been the case. Maia Shishniashvili tells us about the first steps of the organization and recalls the relationship with the first beneficiaries of family-type housing, which was met with opposition from employees, residents or other people:
The difficulty of deinstitutionalization
“At first, it was difficult to communicate with the state or various social service groups. When we started taking care of the challenges on a daily basis, it turned out that there were some serious barriers. For example, when a person made a decision that they wanted to leave the institution, their supporters or residents of the institution tried to persuade them to not do it. They, in fact, had no right to make any independent decisions. The whole mechanism was working against that decision. We had to provide emotional or psychological support to future beneficiaries to enable them to achieve the goal. We helped them talk to social workers, employees of the institutions, to protect their rights to change their lives for the better. It was not easy, because we had to overcome a number of problems at once. Then, when they came to us for monitoring, they often asked if we had any cooks. To this we answered that most houses do not have any cooks in their houses and it is neither a need that our beneficiaries have. They have assistants that help them acquire knowledge needed to lead independent lifestyles. Additionally, they asked for detailed daily agendas for the beneficiaries. This, again, is wrong, because we don’t generally have detailed plans for every day of our lives.”
Years ago, relevant knowledge for the proper implementation of new, tailored services was not yet available in Georgia. The assistants were therefore trained by American and Croatian trainers to help them be properly engaged in the personal empowerment and support of people with disabilities. The organization was able to bring the best practices of developed countries, reflect them in the state program and introduce them in Georgia. In addition, the organization is already involved in the state program of the Ministry of Labor, Health and Social Affairs of Georgia and not only provides services, but also creates a professional, methodological and knowledge resource through international experience in Georgia, which disseminates and shares with all interested persons and organizations. The organization has created a service model and a training package for staff, which creates an opportunity for its further development and expansion in Georgia. Actively involved in the process of deinstitutionalization (return of persons with disabilities from large institutions to society) and advocacy for the rights of persons with disabilities, another area of the organization is to support children living with parents with disabilities.
The need for a society tailored to individual needs
“Everyone should understand that a person shouldn’t be living in isolation. There’s a place for everyone in the society equally. The society should exist in a way that protects the rights of an individual, that takes into account their needs” – Maia Shinsiashvili.
According to Maia Shinshiashvili, the fight for achieved changes goes on and we have to get to a point in which there will be no need for big insitutions.
“There will always be things to fight for, but we have to start somewhere. Today we already have a service that is included in the institutional state funding program. We have everything written and sorted, but it needs to be expanded even further. However, until segregation exists, the situation will not be fixed. If a person thinks that there is an easy way out, they will not try anything else, as they do not see a need for it. There is a place for everyone in the society equally, and the environment should exist in a way that is based on respect, taking into account their needs. If a person looks at life through the prism of individual needs, they will understand the challenges of every vulnerable group much better. We have to build a society in which everyone has equal rights and in order to achieve that some people need more support, while others need less.
Services should not be replacing people’s ordinary daily routines. Of course, there are certain recommendations that people can benefit from, but they shouldn’t be mandatory. In large institutions the beneficiaries have to follow the shared daily agenda. No one thinks about the fact that everyone has their own biological rhythm. The services should take that into account and offer individual support to the beneficiaries.
The institutional model is still leading in most countries. Such community services that we offer, for some reason, are referred to as alternatives. These attitudes are widespread because there is a lack of services that people can get if they want to. I believe that community services are very basic. They aren’t an alternative, they should be a part of the support system. We have to make sure that there will be no need for large institutions and for that community services should be available in every region.
We are still at the stage of physical adaptation and we cannot get past this state, because we haven’t adjusted to it properly. The state sees a unified mass, but the problem must be narrowed down to the individual, and this will create a much greater opportunity to find effective ways to solve it, to use the resource properly.”
Breaking stereotypes through everyday examples
“Lack of knowledge causes stigma. When something is unfamiliar, it is hard to have a correct approach. While when something is familiar, people share their experiences, stereotypes are shattered. Now, often we don’t even have to get involved – our beneficiaries change the misconceptions about themselves on their own” – Maia Shinshiashvili.
At this time, the organization has 7 family-type houses, with 33 people living in them. They have 2 houses in Tbilisi, 4 in Gurjaani and 1 in Batumi. They are planning to open another house in Senaki, in which 5 people will be housed. The residents decide for themselves what they will do throughout the day. For example, they decide when to eat, daily or weekly menus, everything is tailored to their needs; they manage their money according to their priorities. Additionally, every activity is carried out only based on the decisions of the residents, depending on their desires.
The team of the organization works collaboratively, with the interests of the residents in mind. The houses have managers, who with the help of a coordinators helps the assistants to work with a proper view and techniques. The assistants are the main support of the services – they are daily helpers of the residents. The key to a successful organization is a cohesive and strong team.
For Maia Shishniashvili, the fight for the rights of people with disabilities does not end there. She says that with each new step she realizes that there are many more details to be changed and her daily observations help her in her search.
“For me, working for the rights of people with disabilities started with a sense of injustice. I often wondered why my child should not have the same experiences as other children that to school, cafes, get different services. By comparing my experiences to those of my son, I saw what solutions I had to find. If it’s possible for me to achieve something without any obstacles, why shouldn’t my son be able to do that? I asked myself, what should I do, to change that? With this approach I would find a solution. My son had a problem related going to school, and I realized that a personal assistant would solve this challenge. That’s why we created such a service. Another example is the difficulty of searching for a job. People that are locked up in institutions do not have the skills to search for a job. They have never had this experience, they haven’t lived in a society, so we added this component to our services too.
Later on, I realized that if my son’s peers don’t have better awareness, openness to relationships, when I get old, my generation won’t be able to support him. Therefore, there was a need to change the awareness of his peers. Thinking about future pushed me to strengthen the parents of my child’s peers, for them to not go encounter the same obstacles that I had to overcome. For them to not be as tired from fighting at my age, as I am now.”
There still are people with negative attitudes who are against the housing for people with disabilities in their neighborhoods. But the beneficiaries of the organization, who are independent, confident, employed people, work to change the attitudes of those around themselves. They have become human rights defenders and break stereotypes with everyday examples.
“The obligation to eliminate stigma lies, first and foremost, with the state. It should be able to create opportunities for people with disabilities to live in the community, to exist on an equal footing with other people. Housing-type models should be further funded and supported. The situation is changing for the better.”
In terms of such services, Georgia is a leading country in this region. The services of the organization have become a model for such countries as Azerbaijan, Moldova, Kazakhstan, Kirgizstan, Poland and other countries. In 2021, the World Health Organization released a technical package of recommendations for the introduction of human rights-based services – one of six areas related to housing and the service provided by the organization – Hand in Hand was used as an exemplary, which is additional proof that the work started by Maia Shishniashvili years ago is developing in the right direction.