Dana Migalyova: Stop investing into an old system

Lithuania is one of the former Soviet republics, where there are no foster homes for people with chronical mental disorders and very few specialized medical and social institutions (MSIs); where the lives of people with intellectual and mental disabilities are as close as possible to the standards of the most developed countries, where social support system has been well established and operates excellently to help people with even the most difficult diagnoses to live a fulfilling life.

Aynel Kaynazarova, the SFK Public Affairs Coordinator met with Dana to ask her questions of concern to us.

Aynel Kaynazarova (AK): Dana, this year your organization is celebrating its 25^thanniversary. Let’s go 25 years back and remember how it all began.

Dana Migalyova (D.M.): “Viltis” translates into Russian as “hope”. When in 1989 we as parents of special children in Lithuania decided to come together to defend their interests, we had no hope. For the first few months we would just meet and cry. After all, at that time even crying was considered embarrassing. Not only that, but we had to go to work and we had to hide our children, because the society thought that only anti-social families have children with special needs. Over time, people who did not only cry but also acted remained in the initiative group. There were lawyers, teachers, doctors and politicians among us and we have decided to fight for our children, to address their problems and to not place them in foster homes. Hope emerged, and so did our organization along with it. We got registered, wrote our charter and developed a strategy of our work. We realized that it was necessary to stir parents to activity; to talk with experts in this field, to study the experience of creating new types of on-site services. We tried to make systematic changes in the name of human rights and children’s rights; we have inspected large closed institutions and held awareness-raising campaigns.

A.K.: As I am listening to you, I get the feeling that everything came easy for you. Although I can imagine how challenging it was. Please tell me whether there were people in your organization who helped you by sharing their experiences and guided your way?

Dana Migalyova (D.M.): Certainly, it was very difficult. We had studied international practices and received the support from international organizations. But we were well aware that international grants alone will not get us very far. The time will come when international funds will be gone, and the system will have to work at the state level.

Thanks to our trips, where we got acquainted with the social system of developed European countries, we began to clearly understand that we need to fundamentally change the system of foster homes for people with disabilities, work hand in hand with politicians, to change laws, to involve NGOs, the public and to create our own social system models. And you know, we did it. Today in Lithuania, if not everything but a lot of has been done. And most importantly, we are now talking at a different level; we are talking about the quality of life, the quality of services, their availability, an individual approach, etc.

Our structural units operate in every region of the country. Today we have 11 000 members and 58 branches across the country. These branches have day-care centers and family support centers. We are engaged in the social services market; our services are bought by local self-governments, which are something like your local akimats.

А.К.: Could you please tell me about this system in more detail?

D.M.: The law on social services says, “if there is an organization in the area that provides short-term or long-term care social services, then self-government has no right to establish a state-financed institution”. Therefore, in our country self-government buys services from non-governmental organizations. In fact, this is a global experience. Usually, those who make arrangements for such services are non-government organizations established by parents who are interested in the outcome. The standard may be the same, but the quality of services is definitely higher.

– Parents, united by a common problem represent a great strength. We also have some good examples here, in Kazakhstan. But what about those who have neither parents nor relatives? Who is going to solve their problems?

D.M.: There are 268 000 adults and 15 000 children with disabilities in Lithuania (of which 48 000 are in need of support 24 hours a day), which is 7,5% of total population of the country. In our children’s MSIs there are few children with mental disorders, as we have a very well operating early rehabilitation service. For example, there are 580 teenagers living in specialized MSIs for children with special needs in Lithuania, but hardly any preschool age kids. To date, medical and social institutions become municipal social welfare institutions, i.e. a child attends a regular kindergarten, school, clinic, and only comes to foster home for a night sleep. In our country all kindergartens, preschools and schools accept children with special needs. For example, it is absolutely normal to see a child with Down syndrome in a normal kindergarten or school.

If we talk about people with mental disorders, our long-term goal is to make sure that no one even gets to a foster home. To this end, we are carrying out a whole reform and further introduce new services. For instance, we introduce a system of professional custodial care: we train custodians, while the state covers all costs. Very soon there will be pilot courses on alternative services for mentally retarded people. We started talking about protected housing for people with mental health disorders. We have a system of small group homes – apartments with assistants. These are small steps on the way to great changes.

A.K.: Dana, I would like to know more about main achievements of Lithuania in the field of deinstitutionalization?

D.M.: My formation as a specialist in this area was happening simultaneously with the development of our state. I was elected as a member of the Council for people with afflictions (we never say “with disabilities”, preferring the word “afflictions”) affiliated with the Lithuanian government, was elected to the boards of European companies, led the regional office of an international organization. So I have had the unique opportunity to help the young state in shaping and implementing into life democratic and human approaches to people with disabilities.

Ever since 1991 Lithuania has had no schools that would not take special children. We have prepared article 12 of the Education Act, which reads: “Every child, regardless of the type and extent of their disorder, has the right to pre-school, school or vocational training in the community”. Of course, at first both schools and parents of healthy children were indignant, but it was due to ignorance and fear. After all, they did not know how to work with these children.

In 1992 we got the first small home for adults with special needs who had never attended school and had no skills prior to that. In 1992 we ratified the Convention for the Protection of Children’s Rights, prepared the law on social services and began to prepare a catalog of social services, which is being supplemented up to now. In 2000, in order to join the European Union, Lithuania had changed a number of regulatory acts, even the law which was adopted in 1998 “On Special Education” had been integrated into the basic education law.

Along with that, our organization decided to help the state to calculate how much money is spent to keep one person in a closed institution for people with chronic mental disorders. We have prepared questionnaires that were made by all international rules. Interviews were conducted with both the staff and with the residents of these institutions. I visited all 26 MSIs for adults and realized that no systematic work with people to improve their condition was carried out there. These reports were presented to the government, and they made a great impression. In 2010, Lithuania ratified the UN Convention on the protection of the rights of persons with disabilities. This was a big win.

A.K.: You said that there is no systematic work carried out in closed institutions to improve patients’ condition. In this regard, I would really like to ask you a question – what do you think an “everyday” life of a person who was born with mental disability should look like?

D.M.: life of a person born with mental disabilities should be the same as any other person’s life. They should wake up in the morning, wash, drink coffee and go about their business. And it doesn’t matter what their level of development is like. Having friends, working, coming home in the evening, then going out for entertainment. The only difference is that such a person needs an assistant from time to time. Assistants are specially trained people who offer additional support to persons with mental disorders. The sooner we begin to provide assistant’s services, the fewer problems such people will have and the sooner they will be integrated into society.

A.K.: Dana, you often come to Kazakhstan. Do you see any significant changes along this line in our country?

D.M.: You’re right; this is not my first visit to Kazakhstan, therefore, I do see some changes. I can see that currently you have a lot of initiatives on the part of parents; there are inclusive classes now and different organizations began to interact with one another and to create coalitions. This is great!

I remember during my previous visit, a large foster home was opened in Atyrau for children and adults with special needs. In a desert, far from the city, a huge building, with no air conditioning of course… Why do it? I could not understand the joy of the townsmen.

You see, you should not invest into the old system. You can change windows and doors, and paint the walls, but this does not change the approach in the work and the living conditions. We have to think more deeply and systematically. In this respect society plays a very important role. We must work together with parents and professionals as closely as possible. Do not be afraid to use the laws and to go to courts for various violations. You must not think that the whole world should feel sorry for you and help you (parents). We must show that we are able take care of ourselves.

I myself have a son with special needs. He needs support 24 hours a day. But I’m here today, and tomorrow I will be in some other country. I can safely leave him at home, because in Lithuania both the lives and care for people with absolute affliction are on entirely different level. He’s being supervised at a family center by a personal family doctor; he has a personal assistant, which means that I don’t have to worry about leaving him alone. Can your parents do that? I think the answer to this question clarifies a lot of things.