Out of 940 people with Down Syndrome, six employees

The organisation Down Syndrome Kosovaʹ has achieved that through programs that apply to equip many for work. But only six people with Down Syndrome are employed.

Sebahate Beqiri says that due institutional support is lacking and that in 2016 initiative has been made to draft the comprehensive law, one that will treat all disabled persons equally.

But this association is still waiting for the Kosovo government to adopt this concept-document to pave the way for drafting the bill on this society group.

Radio Free Europe: How many people with Down Syndrome do Kosovo have?

Sebahate Beqiri: Based on the statistics that we possess as an association, we have about 940 registered people, but this number can change because we've constantly got adult-age cases that for various reasons haven't contacted the association. We also convey babies' births with Down syndrome based on the cooperation we have with the genetics lab within the gynaecology clinic in Pristina. Every baby that's diagnosed with Down syndrome then a form of the association is completed where we get data on the number of babies' births with this syndrome. But we have cases that weren't announced earlier at the association or other institutions.

What are the conditions offered to this group of friends?

If we talk about the services that society offers, we have two programs, early education and intervention, where under this program we offer psycho-social services and physical therapy for children with Down Syndrome from 0 to 12. We also have a program for training and professional training where under this programme the adults with Down Syndrome are locked in. This program plays a very important role in preparing people with an independent life and a job market. It is noteworthy that within this programme we have managed to support the employment of six people.

As the early education and intervention program provides services for children, but we do not have the physical capacity to provide services to all the children in need. But anyway, we've managed to hire six people with the 940 Down Syndrome. But that number includes all age groups. It is not satisfying compared with the number of those who are available for the job market.

No one is employed in the public institution, everyone is in the private sector. We've had an agreement with the Ministry of Labour and Social Management where under this deal we have trained about 30 people with Down Syndrome, but we haven't yet found a suitable situation or had no support from institutions in order to pave the way for these people's employment.

What does your organization do to integrate people into society with Down Syndrome?

In addition to the services we provide within the association since its establishment, the Down Syndrome Kosovo Organisation has had a key role in protecting community rights, and we have also played and also continue to play a very important role in the field of acceptance.

We have undertaken many initiatives involving realising the rights of people with Down Syndrome. It is noteworthy that in 2016 we have taken the initiative in drafting the comprehensive Law, a law that will treat all people equally not only people with syndrome down but all disabled persons. We have finalised the concept of the document. We're on hold, and really this process has been prolonged. We are waiting for the Government of Kosovo to adopt this concept of document to pave the way for drafting the draft law on persons with limited abilities.

What is the institutional support this category of society receive?

institutional support is not enough, we as the association within the projects have support, which is not enough based on community needs. We cannot say that we have enough support since many areas are not regulated by laws.

I mentioned the initiative to draft a comprehensive law, even those laws that we have in force, are not applicable, it means there are many shortcomings in the law enforcement. We have the law for training and professional education where every institution should have, if it has 50 employees, the 51st should be a disabled person.

This law has little support on the field. The pre-school education law is also not being implemented. Children not only with lower syndrome, but generally disabled children face lack of services within public schools. It means positive changes, but we still have a very difficult situation with regard to people with lower syndrome and generally disabled persons in the Republic of Kosovo.

How does society see people with Down syndrome?

It's also seen that the level of consciousness has been markedly elevated, as a result that as a ongoing association we have organized many activities that have promoted the potential of people with Down Syndrome, besides promoting potential, we in our campaigns have always included needs and what should be done to improve living conditions for people with syndrome below.

But, I always point, it's not all about raising awareness levels. Low - syndrome individuals need services, need greater support, and there is a family that needs support because often the challenges that family faces in this case with a child or an adult down syndrome falls more just above the shoulders of the family. So I think it's time for the institutions to be more conscious of the community of disabled people.

Do Kosovo families hesitate to bring people with Down Syndrome to you for activities?

The nature of the work in the organization and the composition of the body staff have influenced parents not to hesitate to find themselves as a second home to call him inside the organization. We still have ongoing identification of cases that hesitate, that keep them isolated. These cases, however, are on the decline, as it appears, the level of consciousness in families is also rising, meaning, parents are not reluctant to report, search for information on syndrome down. Yet, it still has to be worked on.

In informing our parents about the correct information on syndrome down, because we are often faced with a lack of information, and this is one of the reasons parents hesitate or close within the family to ask for information or not to have ambition that a person with syndrome down really has the right service and support can contribute and can live a life like other people.

Normal, given the challenges they have and the difficulties they have need greater support, but if that support is provided by society they can live an independent life and be productive to society. We have many cases of success that people with syndrome down there have shown success in various fields. (REL)