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Wertlieb - ERC1 Status and Service Innovation for Children with Disabilities in Ukraine Donald Wertlieb, Ph.D. Eliot-Pearson Dept of Child Development.

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Presentation on theme: "Wertlieb - ERC1 Status and Service Innovation for Children with Disabilities in Ukraine Donald Wertlieb, Ph.D. Eliot-Pearson Dept of Child Development."— Presentation transcript:

1 Wertlieb - ERC1 Status and Service Innovation for Children with Disabilities in Ukraine Donald Wertlieb, Ph.D. Eliot-Pearson Dept of Child Development Tufts University Medford, MA USA World Bank, Washington, D.C. May 5, 2008

2 Wertlieb - ERC2 Status and Service Innovation for Children with Disabilities in Ukraine Conceptual framework(s) Program prototype: The ERC Challenges & opportunities

3 Wertlieb - ERC3 Conceptual frameworks Bio-ecological theory Developmental Biopsychosocioculturospiritual Risk & Resilience (reconsidered) Applied Developmental Science From defectology to positive youth development Stress & Coping Paradigm

4 Wertlieb - ERC4 ILLNESS STRESS Stress and Coping Perspectives

5 Wertlieb - ERC5

6 STRESS Development Major life event Hassles Chronic COPING RESOURCES/ MODERATORS Social support “Intelligence” Personality SES COPING PROCESSES Appraisal focus Problem-solving focus Emotion management focus OUTCOMES Health Illness Adaptation Quality of life Stress and Coping Paradigm

7 Wertlieb - ERC7 Core dynamics: Levels of observation & analysis Individual – family – team/institution/community No such thing as a child Short-, medium- & long-term impacts “maladaptive coping” Resilience Resilience reconsidered

8 Wertlieb - ERC8 The center of Europe:

9 Wertlieb - ERC9 Ukraine as a Nation Ukrainian independence is proclaimed. - Population - about (and decreasing) (10 million children) -West: Ukrainian, agriculture & East: Russian, heavy industry -High levels of pollution: air, water, ground, pesticides, heavy metals -Minorities: Russian, Hungarian, Moldavian, Jewish, Roma, Tatars

10 Wertlieb - ERC10 Dnipropetrovsk Over 1 million population (45,000 Jews) 3 rd largest city (after Kyiv & Kharkov) 30% poverty rate High proportion of higher ed completers 60% of children attend preschool Far from Chernobyl “Closed City” under Soviets

11 Wertlieb - ERC11 dvd

12 Wertlieb - ERC12 Children with disabilities in Ukraine ? 16,000 or 55,000 or 62,000 or 96,000 ? in institutions, internati, special schools (aka inmates) ? 155,000 “registered” (170/10,000)? 396 special schools 100,000 street children (aged out at yrs) 900 NGO’s with disability priority

13 Wertlieb - ERC13 OUR MISSION The Education Resource Center provides developmentally-appropriate educational and social adaptation services to children with disabilities. Through community outreach, families of children with different disabilities are invited to participate in a variety of programs to enhance their quality of life. As democracy evolves in Ukraine, these families are enabled and empowered so that their children might be included in the emerging society. The multidisciplinary team at the Educational Resource Center provides direct service to children at the center and trains young professionals. The Center also functions as a resource center in a network sharing information and technology for educating children with special needs and advocating for them and their families. We are part of a world-wide movement to support the human rights of individuals with disabilities and to build an inclusive civil society where diversity is celebrated as a strength. Educational Resource Center Bet Hana Pedagogical Institute Dnipropetrovsk, Ukraine

14 Wertlieb - ERC14 OUR APPROACH Holistic - Our concern is with the whole child, attending to academic, social, emotional, intellectual, physical, and spiritual development. The important contexts of family, community and society are central. Multidisciplinary- Our team of professionals includes education, special education, corrective pedagogy, neurology, psychology, social work, speech and language therapy, physical therapy, art-therapy - all in collaboration supporting the child's health and development. Parents as Partners- Parents are in unique and pivotal positions to address their children's needs. They are included as active members of the team and respected as teachers, experts and advocates. Continue…

15 Wertlieb - ERC15 Training Tomorrow's Teachers- Student teachers as well as trainees and interns from other professions are key elements of our programs as we strive to provide better quality services for more children in settings worldwide. Leadership in Special Needs Advocacy and Training- As pioneers in special needs services and education in Ukraine, we take responsibility for leadership in the CIS Jewish disabilities communities.

16 Wertlieb - ERC16 Training Tomorrow's Teachers- Student teachers as well as trainees and interns from other professions are key elements of our programs as we strive to provide better quality services for more children in settings worldwide. Leadership in Special Needs Advocacy and Training- As pioneers in special needs services and education in Ukraine, we take responsibility for leadership in the CIS Jewish disabilities communities.

17 Wertlieb - ERC17 OUR SERVICES multidisciplinary assessment by a team of professionals to determine educational goals and objectives for each child a range of interventions and therapies to enhance the health and development of each child advocacy for children, families and communities professional development opportunities for professionals including training provided by Step-by-Step, Tufts University Center for Applied Child Development, and Orot Israel Academic College a multimedia resource library loaning books, magazines, software and curriculum materials

18 Wertlieb - ERC18 OUR STANDARDS As a new and growing center, we aspire to the ethical and professional standards inherent in developmentally- appropriate practice as articulated by the National Association for the Education of Young Children (US), the Council for Exceptional Children(US), the UN Declaration of Children's Rights, and UNESCO's Salamanca Statement on Special Needs Education. Ukraine joined all of the Agreements above in 1993.

19 Wertlieb - ERC19 TAKING ADVANTAGE OF BEING A PEDAGOGICAL INSTITUTE LAB SCHOOL The Special Needs Education Resource Center is developed on the base of the FSU largest Jewish pedagogical institute, which has been working collaboratively with the Ministries of Education of Ukraine and Israel for 15 years and integrates curriculums with the Orot Academic College, which also has a major in special education. Upon receiving a Certificate of Special Education after 3 years of training a young teacher or a pre-school teacher can expand this practice as well as her knowledge and skills on the community where she comes to work. Bet-Hana graduates already work in many cities of Ukraine and the FSU. The development of the Special Needs Education Resource Center working on implementation of inclusive education - one of the most state-of-the-art pedagogical technologies on the base of Bet-Hana Pedagogical Institute, which gradually turns into the FSU methodological center of Jewish education, was the most optimal decision. As the result the whole potential of the seminary including library, methodological center of Jewish education, pre-school music teaching department and computer lab are being effectively used.

20 Wertlieb - ERC20 When people come to the Education Resource Center they will see: children actively and happily engaged in a wide variety of educational and therapeutic activities parents and professionals collaborating to enhance children's development a variety of teacher-made and commercial curriculum materials a computer station bookmarked with important and useful WWW internet sites to support work with children with disabilities a multimedia resource library with a variety of books, journals and pamphlets informative to parents and professionals artfully orchestrated teaching addressing group and individual learning objectives student teachers learning the arts and sciences of special education a child-centered, family-friendly environment committed to learning for all

21 21 Parent voices... 1 (Fridman, 2004) V. You know, when it happens that you start feeling… desperate because no one… no one is dealing with this problem, that in reality no one is interested, except for the parents, yes… and we have many families like this in our city… families that have children… so you start to understand that only parents can accomplish anything, and you get the desire to create some kind of a center like Bet-Hana, you see… where the parents could really get together…V. You know, when it happens that you start feeling… desperate because no one… no one is dealing with this problem, that in reality no one is interested, except for the parents, yes… and we have many families like this in our city… families that have children… so you start to understand that only parents can accomplish anything, and you get the desire to create some kind of a center like Bet-Hana, you see… where the parents could really get together…

22 22 Parent voices... 2 S. So, what happened is that his muscle tissue became so relaxed that he could not deal with his own saliva, he couldn’t swallow it. I am asking, “Please come and see what’s going on with the child.” Y. You asked… S. Yes, [I asked] our treating doctor. V. … at the hospital… S. He didn’t come. He didn’t look [at the child] once. So, I keep referring, keep saying, “You see, the child probably has an allergic reaction to Finolepsin, because after taking Finolepsin he starts…” He says, “You know, you are the first [mother] in the world whose child has an adverse reaction, has allergic reaction to Finolepsin. It’s the first.” But why the child… he ignored my complaint. And at one point, at one wonderful… not so wonderful, of course, moment (sighs), the child (sighs) starts to suffocate. He turned blue in my hands. He completely stopped breathing. He turns black-blue. And all this happens late at night when most of the doctors have left. So, by the time we got attention, by the time we… I can’t remember how much time that took. In the state I was in, you lose track of time, become disoriented. So, they were resuscitating him in the emergency room, and a phrase… well, we were sitting outside by the door, and we could hear, “Reflexes present, reflexes present.” So it was his second clinical death in three months. The first one I am not sure about, whether he was dead or not, but this clinical death, and that was the end of it. I was waiting for everything to come back that he was capable of. S. He didn’t come. He didn’t look [at the child] once. So, I keep referring, keep saying, “You see, the child probably has an allergic reaction to Finolepsin, because after taking Finolepsin he starts…” He says, “You know, you are the first [mother] in the world whose child has an adverse reaction, has allergic reaction to Finolepsin. It’s the first.” But why the child… he ignored my complaint. And at one point, at one wonderful… not so wonderful, of course, moment (sighs), the child (sighs) starts to suffocate. He turned blue in my hands. He completely stopped breathing. He turns black-blue. And all this happens late at night when most of the doctors have left. So, by the time we got attention, by the time we… I can’t remember how much time that took. In the state I was in, you lose track of time, become disoriented. So, they were resuscitating him in the emergency room, and a phrase… well, we were sitting outside by the door, and we could hear, “Reflexes present, reflexes present.” So it was his second clinical death in three months. The first one I am not sure about, whether he was dead or not, but this clinical death, and that was the end of it. I was waiting for everything to come back that he was capable of.

23 Wertlieb - ERC23 Parent voices... 3 F. And if you look around, there are many invalids in our city… Not like you can come out and look around and see that everyone is in wheelchair, [but]… M. It’s because they are all staying home… F. They are all staying home, and kompleksuyut (feel inferior), kompleksuyut… Because the perception is… if you walk along the street with the child, he gets looks, and some people even laugh at him… Look, look there – such a big kid and is sitting in a wheelchair (stroller?). M. Our society is simply raised to believe that disability is a vice. Almost like zaraza (something nasty and contagious)… F. But if all invalids would come out, then… then everyone would see how many invalids we have... M. Yes, anyway… F....and that might get them to realize that we have another social stratum.

24 Wertlieb - ERC24 Parent voices... 4 Y. And you, specifically, what kind of attitudes do you encounter when you go into town with your child? when you go into town with your child? S. They laugh. I kompleksovala (felt inferior) before. But I overcome that in myself, and… V. You know, Yulika, we got used to it… We used to feel embarrassed before, kompleksovali a little (felt a little inferior), but now we started to just look people straight in the eyes. Say, we are walking, and notice a look being given to our child. Well, the people that are walking in the opposite direction… We simply look them straight in the eyes… And they also willy-nilly… also look you in the eye. S. Children laugh. I, sometimes, stop a child and ask, “Please explain to me, I can not understand – maybe this is really so funny? Maybe there is something I am missing? Please explain to me – is this funny? And he… he understands that he is doing something wrong… Y. It takes a lot of strength…

25 Wertlieb - ERC25 Parent voices... 5 Y. So, we talked a bit about the people that you randomly encounter. What about professionals – doctors, teachers? S. Well, like I said, there are some people, few and far between, that we picked, so these people are normal people, so to speak, who are not financially invested. They charge us a certain amount of money… for their work… We feel that they are not making a fortune on our affliction. But mostly we find that… V. Some people even… Some people even say that… We are not going to charge you…

26 26 Parent voices... 6 Y. And when the doctors tell you the diagnosis, for example, the doctor told toy that the child has CP, and then, at eight months, said that he has severe autism, how does this conversation go? Do the doctors give you any information about what to do, what it means, about the prognosis? M. When we learned about it the first time, the child simply was in the incubator (?). The first time my husband called reanimaciya (emergency care), and when… when they were taking him… and the head of the hospital… and here he is being taken, and I am begging the emergency doctor, I say, “I am begging you, let my child live”, and she says, “What do you need it for?” She was not telling yet the diagnosis, CP. “You will have such problems. Your child will never walk. Your child will never talk.” You see, I didn’t even know that word, CP. And the first time we learned about it, it was on the emergency ward, right? Yes, it was eighth, maybe tenth day of [his] life… and he, the emergency doctor, told us the diagnosis. Horrible.

27 Wertlieb - ERC27 Parent voices... 7 Y. Is it the typical attitude on the doctor’s part to say, “What do you need this for?Y. Is it the typical attitude on the doctor’s part to say, “What do you need this for? M. In our country, it is.M. In our country, it is. M. Yes, yes… You know, when I was already in the Resource Center and talked to many mothers… by the way, it is such a big help, talking to parents of those children, especially if the children are older, who have gone through this all before… Practically all were told, “Give [him/her] up”, practically all were told that nothing will come out [of the child], practically all were told that he would be better off dead, your child.M. Yes, yes… You know, when I was already in the Resource Center and talked to many mothers… by the way, it is such a big help, talking to parents of those children, especially if the children are older, who have gone through this all before… Practically all were told, “Give [him/her] up”, practically all were told that nothing will come out [of the child], practically all were told that he would be better off dead, your child. F. Not practically all – all of them.F. Not practically all – all of them.

28 Wertlieb - ERC28 Parent voices... 8 M. No, just conversations, you know, it is likely that you have forgotten already in 9 years… It happens often and not only around me… It is done intentionally, when people position themselves close to you and start discussing out loud, as if they were not talking about us, but loudly… “Wow, how is that… this has not happened for no reason, someone somewhere must have…” It is not so bad if they simply say that G-d sent this punishment. This is the best case scenario… Often there is a recounting, “it must be something genetic in their family somewhere… someone did something somewhere when drunk…” And so on.. That happened to us too.. And now, thanks G-d, even these people go, “Hello, how is the little one? Mishen’ka, give me your hand! Oh, he is drooling.” Even like that… Very, very impressive…

29 Wertlieb - ERC29 Parent voices... 8 (cont) M. I was considered to be a woman who is giving birth late. It was my first pregnancy, first child, a woman who gives birth late it is called. And if some other people, who are younger, they were usually told, “But you are still young, you have your whole life ahead of you”, we probably had it written all over our faces that we are not that young already, and that for now besides him there is nothing ahead of us, you see… F. No, it was not even a question. We wanted him, we love him. M. Yes, yes. And that’s why, to tell you the truth, they tried to talk to us heart-to-heart, but on the other hand more… F. No, M, I didn’t give a $%&*, they didn’t talk to us all that much… M. Father, do not forget, that everything is recorded, what a rude word! We also had a situation. To tell you the truth, when I learned the diagnosis, it was later on… some time later my husband and I returned to this conversation, and I say, “You know, F., I understood, that even if you leave me, I will take this child and will raise him alone.” And he says, “And I, to tell you the truth, was thinking that even if you say, “Well, let’s give him up”, I will take him and will raise him alone.” So that each one of us made our own decision.

30 Wertlieb - ERC30 Challenges & Opportunities Furious and momentous pace of change Democratization Cultural responsiveness Stigma Practice-Based Evidence & Evidence-Based Practice Lab schools as optimal/critical modes for knowledge dissemination Social assistance & protection vs Education 900 disability NGO’s: feast or famine? Policy bias and institutional care

31 Wertlieb - ERC31 Thanks to our partners: The Jewish communities of Boston & Dnipropetrovsk Tufts University CIBC World Markets Step-by-Step Foundation Gordon College (Israel) Orot Academic College (Israel)

32 And thanks to you for your attention and feedback. Contact:

33 Wertlieb - ERC33 Discussion and Q&A Match/mismatch – here and Kyiv ? Another parent’s voice? Any “Challenge/Opportunity”? Collaboration links?


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