Who is Emanuela ZAIMI?
I was born on May 12, 1982, and I was born in Bulqiza. I completed my higher studies in Turkey, at Ankara University, Faculty of Communication, Department of Public Relations and Promotion. Then I graduated MA at the University of Bologna, for "Creation and Development of Small and Medium Enterprises in transition countries". In 8 years of work, I have worked in the field of strategic communication (marketing, PR, Advertising, event management, fundraising, business development/project management), in the banking sector, energy, in international marketing agencies, and the NGO sector.
I am married and have two children, Arbin and Dea.
Your career has taken a sudden turn for some time...You left a job with a very good salary to run DSA as an activity that requires your commitment to full time. Can you tell us a little about this moment in your professional life?
Yes. After a long effort to do two jobs, where one provided me with a good financial status while the other only enriched my soul, I chose, somewhat forced, the latter as it gave me more pleasure and because being my own work by no means I couldn't leave it.
When I created the DSA I was not very aware of the proportions it would take or the commitment it would require, a commitment not only full-time but often over-time. DSA is an NGO that has taken on great proportions even though it is very young in biological age. It has a vision and mission that in the conditions that our country is in, it takes a lot of work to realize them, and on the other hand, in addition to good management skills, it is an enterprise that needs people with strong motivation.
The DSA has become a motivation for my life, and the satisfaction I received from any commitment to it helped me make the decision to give up my previous job, and choose a challenging job, the financial benefits of which are not even 30% of what I earned before, but the work I do today fulfills and enriches me in everything else that has no price or is intangible. After all, I am working for the present and the future of my children. The first 2 months with the new conditions were difficult, in the 3rd month I confirmed that saying that goes: "Man spends as much as he has".
Yes despite everything I feel I have found the ideal job, taking for granted that the ideal job is somewhere between what you know how to do and want to do. I know I want to do this job and so far the results have shown that I also know how to do it.
How did the idea of realizing DSA come about? What activities has it undertaken so far and what does it plan to do? Do you have connections with international analogs and has this in any way influenced the strengthening of DSA Albania?
The idea for DSA originated 3 years ago when we as parents of a child with Down syndrome faced a far from good reality of raising and securing a dignified future for our child, a child with special needs. After in-depth information (through literature in foreign languages) on Down syndrome, on the specific needs that these individuals have, on their rights, and ours as parents and after we realized that these rights and needs are not addressed in an institutionalized form, I decided to do something.
The rapid acceptance of reality, my voluntary initiatives to raise the voice on what is the syndrome, what our children need, and their rights but also ours as parents, attracted the attention of the media as it was understood no one had ever spoken or heard of it before. Most urgently we saw the lack of specialized services, so we rushed to provide what we have today "Achievement and Development Center" for children with Down syndrome.
Thanks to the invaluable support of Mr. Saimir Pirgu, through his charity concert for DSA, in October 2013 and then thanks to the support of businesses in the country we managed to set up a center that today serves 30 children but comes to help in various ways many others and their families. Thanks to business support these services are provided free of charge at DSA.
In its objectives and goals, DSA has Awareness, Inclusion, Representation, and Support. In terms of awareness, we believe we have done a lot of good work in very little time. We have made not only the general public aware but above all, we have made the institutions and parents aware of the needs and rights of our children. Our awareness campaigns and activities are focused on March 21, World Down Syndrome Day, and October, Down Syndrome Awareness Month.
In terms of inclusiveness, here our impact is less tangible because this is a process that must be implemented through policy-making (law-making or implementation) by the state structure. Here we have in mind the conditions for inclusive education, vocational training, and employment, which would provide an active life for individuals with SD, like any other citizen in the society where we live. As part of advocacy and lobbying, DSA counts several achievements and agreements with key institutions such as the Ministry of Social Welfare, the Ministry of Education and Sports, and the Ministry of Health.
Thanks to several projects, DSA has managed to: organize a scientific conference on "Health Aspects of Individuals with SD", which was attended by 140 Albanian doctors who enriched their professional knowledge on this syndrome. We have already published for the first time in Albanian, the Health Guide for individuals with SD, a translation of the publication of the European Down Syndrome Association. We have trained 120 educators and caregivers, staff of kindergartens and kindergartens in Tirana, on aspects of development and care for children with SD part of the general public preschool education system. We have also published a practical guide for these educators. With the support of the State Social Service and the Department of Medical Genetics at QSUT, we finally have the first statistics for individuals with SD living in Albania and they are 635 people. We have signed a memorandum of understanding with the MES, which we will use to analyze and assist in the process of providing a comprehensive education for children with SD.
We are working to understand the reality of these children's education. In terms of support and facilitation for a better life, in addition to therapeutic services and life training courses at our center, DSA has signed several other agreements such as those with private hospitals where visits for individuals with SD are free and any other examination is enabled with a discounted price, but also realization of operations abroad with 0 costs for the family, when they are impossible to perform in our country.
DSA aims to become a self-sustaining organization. The biggest challenge is the financial one. To ensure some self-sustainability, the DSA is working to set up a social business, which will "supply" the DSA with income but also employ young people with Down syndrome. On the other hand, DSA will not stop fighting to provide services for every child and individual with SD in Albania. It is unacceptable for a baby to have to travel from Shkodra, Lezha, Puka, Fieri, Librazhd, etc. to get the services it needs in our center. These services must be accessible in the city where they live. On the other hand, it is equally unacceptable that an individual with SD may not be able to lead an active and inclusive life. He must have a job and his income and be able to live a life of at least semi-independence. Syndrome Kosovo and Down Syndrome Turkey, undoubtedly have a big role in strengthening us as they are earlier in the field and more experienced than us.
How hard to manage is this venture? Are there any differences from other companies where you have worked? If so, in what aspects?
DSA has difficulties as an NGO, but also I as its leader. Ensuring sustainability is the biggest challenge as an NGO. On the other hand, I encounter the difficulties of an employer in such a financial field but also in a field where the human capital specialized in services for children with SD or other intellectual abilities is poor. It is at the expense of the DSA to increase human resource capacity, and this is a separate item that should be included in the DSA's annual budget.
What reward does it give in return? From what we see in following DSA activities on social media, there is a lot, but a lot of love… it seems that this job fills you with love. Is it true? Do you give or receive more love from it?
I am enriching my soul with this work. I feel valuable to society, my work is appreciated, I am thankful, I am supported in different ways, I receive blessings not only from my parents but from many people .. and I start and end the day with the hugs of my children and the hugs of my children DSA… and yes, there is a lot of love, we can hug 10 times a day in DSA. Such ventures bring about a radical change in the entire system of functioning of the state and society.
How do you evaluate the work done so far, what change have you managed to bring? Do you think that you have managed to set something in motion in the governing structures?
I can say with great certainty that in all three line ministries and with interest in the DSA, our cause is already known and known much more than 3 years ago for our needs. We are part of many consultation roundtables within the reforms that the Ministry of Social Welfare and Youth has received and is undertaking. Of course, the radical change, which will make tangible and livable those services and infrastructure that our children need, will still take time, a lot of time, but it is a good start, which must be maintained "tempo". On the other hand, our country is poor, and this fact hinders the maintenance of this "tempo" and even more so with its frequency. But it is a fact, a fact that hurts us parents of children living today, that every day that passes without providing what our children need is a missed chance for a better, healthier, more dignified, and more inclusive future… This fact worries me a lot as a mother and as a DSA leader.
What about you, as a person, has this job changed you? What have you learned that you can share with those young people who want to make a difference with their ventures?
To me, in many ways. I would advise young people to dare to be concrete and proactive in realizing their ideas or dreams. Do not be afraid of mistakes they can make, as long as they believe in their project. Seek support from everyone and be grateful when they have it. In those "terrible" days when I was weighing the decision to leave a job which every 1st day of the month provided me with a good salary, valid private health insurance, and vacation for myself and the whole family (a very important benefit especially this about my son with Down syndrome), etc etc, a friend told me "Emma do not be afraid, there are many people out there who will give you the right help and support to move forward." And indeed it is. Until this morning it was almost 90% certain that after October, the DSA would seriously jeopardize the provision of free services to children, but after a lunch meeting, it is almost 90% certain that the DSA would be able to raise funds and for another year. This was a meeting with one of those "out there". We do not know what tomorrow will bring, but it is important that even if it does not bring us what we want, we know how to manage it and turn it into an opportunity in favor of our well-being, our happiness.
How would young people feel if they choose to run a "Heart Entrepreneurship?" Can young people come and work (as interns) in your organization, it's probably the best way to feel this kind of entrepreneurship.
As the founder of Down Syndrome Albania, I would invite them as they would feel fulfilled, with increased self-confidence and self-respect. Yes of course they can come. One of the biggest assets the DSA has is volunteers or interns. All the staff that is at DSA today has worked for at least 2 months voluntarily at DSA. Volunteers with us are allowed to realize their mini-projects. Understanding the needs and objectives of the DSA, they propose ideas and projects that are implemented. In this form, they help us, and above all, they develop their skills and talents. To give some examples, the "Trisomy 21 Exhibition" is a 100% idea and realization of DSA volunteers. Two volunteers, medical students, on their initiative, these days are engaged in writing a project, which aims to enable a check-up according to the Down syndrome protocol, for all individuals with SD in Albania. I am very confident that they will take this to the end. Anyone wishing to join the DSA as a volunteer can email us at [email protected] or fill out the volunteer form on our website www.dsalbania.org
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