About Community-based Housing for the Disabled, and a Dream

INTERVIEW

See me, I can! – reads the slogan of ‘Hand in Hand,’ an NGO that provides community-based housing for persons with mental and intellectual disabilities.

GEORGIA TODAY met with Maia Shishniashvili, the founder of Hand in Hand to find out how she decided to be the first to introduce and develop this new concept in Georgia.    

What gave you the idea of founding Hand in Hand?

It was because of my son, Levancho, who was born with the very rare Angelman syndrome, a complex genetic disorder that affects the nervous system. The condition is characterized with delayed development, intellectual disability, severe speech impairment and Ataxia - problems with movements and balance. Children with Angelman syndrome in most cases have epilepsy. Discovering Levan’s diagnosis was a total shock.  I went to the US on an Edmund S. Muskie Scholarship when Levan’s condition worsened. The only diagnosis we had in Georgia was of epilepsy; the doctors had no answers to the questions I asked, which made me decide to take him to the US. The diagnosis of Angelman’s syndrome is still extremely difficult, practically impossible in Georgia.  I went to the US alone and did my MS in community health education. Luckily, with enormous effort, I managed to finish a two-year MS program in one year, and by taking Levan with me had the chance to spend more time with him. Additionally, I tried to learn as much as I could about the services available for children with disabilities. I went to all the treatments and examinations he had, I observed, learned, and slowly got involved. The final results of my son’s diagnosis arrived when we were back in Georgia, and that’s when I first heard of Angelman syndrome. When I read about it, one phrase struck me in particular.  It said he could never live independently; he would always need support services.

I took him to an integrated kindergarten class, then to a day center, then to school, because it’s so important for him, and for all children with disabilities, to be included with children we call “normal”. Making friendships is hugely important. 

What were your next steps?

I felt that something was missing; I feared the future. I constantly caught myself wondering what would happen to my child if I couldn’t be there for him for any reason, wondering how he’d cope. I started to think what kind of assistance should be provided. That’s when the idea of creating community-based housing for people with disabilities came along. At the time, I didn’t even know that there were institutions for the disabled. Because I’d learned about the best existing practices in the US, my goal was to create an environment maximally adjusted to the conditions and atmosphere of family living- it was the only model I wanted to establish and follow. We founded our NGO Hand in Hand in 2010 with a mission to create better living conditions for people with disabilities and to support their inclusion and integration into society. I realized that the major problem was not in providing services for persons with disabilities, but in helping them transition from the institution to the community-based housing. There were many examples when people who came to live in our center from the so-called shelters had been physically and psychologically abused and consequently had no trust. Their stories and experiences were often dramatic and heartbreaking. It took a lot of effort to help them forget all that negativity. In Georgia, the concept of community-based housing for the disabled is slightly different from international practice. In foreign countries there are very strict limitations regarding the number of beneficiaries. The ideal number of people in each home must not exceed six, otherwise it becomes difficult to monitor the needs of each individual, and I agree with that totally. At Hand in Hand, we always try to pay attention to each of our inhabitants. Their freedom is very important for us. Our mission here is to assist them in becoming as independent as they possibly can in controlling and leading their own lives.     

What do you think needs to be done for them to be integrated into society?

Unfortunately, there still are many stereotypes in our country even with those social workers and psychologists who work with persons with disabilities. I think we have to give people who are mentally disabled a chance to make their own mistakes, and learn from them.  We all make mistakes, but only people with disabilities are treated differently, with their mistakes often being credited to their disability. Of course, we’re here to assist them even when they make mistakes. We have to help them to acquire the necessary skills for independent living.  Very often, when we meet disabled people living in institutions, they don’t even know about the possibilities of living outside as many of them have spent their whole lives isolated. We ask that they visit us and choose. The services we offer in each of our six houses are for adults.  However, it’s not enough to have just family-type community housing services. I would wish the same system we have here to be developed in homes themselves. Services should also be provided to children and adults living at home with their parents. Do we see them? No. They are isolated from society and locked in their own homes. From January, we’re starting a pilot project bringing assistants to homes directly.

Can you name any positive changes in providing services for persons with disabilities?

The State sees the importance of family-type housing for persons with disabilities and is starting to acknowledge their right to have free choices and to live in a comfortable environment. We are trying to develop our services according to the everyday needs and the skills gained by our beneficiaries. Two of them, Giorgi and Christina, were interns at the social enterprise “Babale” and will soon start to officially work there with salaries. The next step for us will be to assist them in learning how to manage their incomes. In our center in Gurjaani, both last year and this, we’ve been producing and selling Churchkhelas, with the money raised used for the needs of the center in Kakheti. Although we’re now enrolled in a state financed program, the only regular donor we have is the Open Society Georgia Foundation. Through a friend of mine, I met Judith Klein, who’s been the director of the Mental Health Initiative and worked for the Open Society Foundation since 1995. She was instantly inspired with the idea of creating a family type housing center for the disabled and I was sent to Croatia for training. Croatia has already started the process of de-institutionalization, with State institutions being transformed into family-type housing centers. I’m dreaming of the time when the same comes to pass in Georgia, and I don’t want to wait another fifteen years for it; I’m dreaming of a time when people with disabilities won’t have to leave their homes, but will have services right there to help them be independent; I’m dreaming of seeing people with disabilities everywhere working, studying, traveling, having fun and enjoying their lives, just like others do.

Nino Gugunishvili