“Disabled People Fight for the Rights” from UCAN

May 21st, 2008 by Katya

I just read this on UCAN (Ukraine Citizen Action Network). Its about making tourism in Ukraine more accessible to the disabled community

http://www.ucan-isc.org.ua/eng/success_stories/improved_access_to_services_and_resources/

Social Company in Ukraine

May 21st, 2008 by Katya

I just read about this and I think its amazing.

Ilona Gudvonka is the director of Strumochuk, a not for profit that helps children with disabilities and their families. Ilona and Volodymyr Slobodanyak, a small business owner, work together to form Social Company. Social Company’s profits fund Strumochuk.

Read further: http://www.iscvt.org/what_we_do/civil_society/article/philanthropy.php

Adoption and Unavailable Orphans

May 21st, 2008 by Katya

I admire couples who decide to adopt children internationally (yes, even the celebrities). Aside from the beauracracy and the staggering expenses, couples also deal with the heart ache of becoming attached to a child and learning that child is unavailable because he/she still has family ties with their family.

In ony of my visits to the orphanage, I remember one morning where a Ukrainian family came to take a child home. The grandfather of the child came accompanied by the child’s mother. The two of them met with orphanage supervisors to discuss the possibility of taking the child back. My reaction to a case like this is split. On the one hand, I know that children belong in families and so I was happy this child’s caretaker had returned. Yet, the mother of the child was accompanied by the grandfather (I believe this was necessary to prove to the orphanage staff that in case the mother was incapable of caring for the child, the grandfather would step in as caretaker) which suggested to me this mother was possibly unprepared. Would the child fare well in such a scenario? I hoped so.

I can imagine how hard it is for foreign couples to meet a child, form a connection, want to adopt and then find out that child still has family ties. I believe the Ukrainian goverment is very sensitive to the desires of parents who give their children up for adoption, but try to retain connection with the child. It is also my understanding that the Ukrainian government prefers for an orphan to be adopted back by the child’s original family or a Ukrainian couple. I noticed that in adoptions, some foreign couples are duped into thinking they are adopting a healthy child and then when they arrive in Ukraine, that child is swapped for a child with a physical and mental disabilities and/or is sick and unwell. Or sometimes, the orphanage staff misleads the adopting couple/individual (this applies to both Ukrainian and foreign couples or individuals) into thinking the child they are adopting is free of medical problems.

Working with disabled orphans, my heart goes out to all the disabled children who need to be adopted. Speaking of family ties, there was this one child, B, who had something like CP and was already much older, around 16 years of age. His family would take him on vacation every summer but he would live at the orphanage year around. What made things even more complex in B’s case, was that B was a twin and his twin did not have a disability. Ughh, this stuff racks my brain sometimes. I have mini ethical breakdowns when I think of this stuff for too long.

In B’s case and I’m sure there are other children like him, families cannot handle the responsibility of caring for a child with disabilities. Whether they can actually handle or do not want to, is hard to say. I am sure the difficulty in caring for a child with a disability in Ukraine is a spectrum. All I can say is I want it to change. I want more families to keep their children even when they are born with disabilities. There are definitely outlets and support available to these people in Ukraine. I know because I learned about a lot of them while doing my Fulbright. It is still hard in small villages located in remote areas. But little by little, I think the perception of disability will change if more parents are willing to step up to the challenge of caring for a child with a disability.

My thoughts on problems facing orphans: Stigma

May 19th, 2008 by Katya

When I first visited the Ukrainian orphanages, I was shocked by the status of children. I think that the conditions were so difficult to comprehend mentally that I had difficulty accurately processing my experience. During my Fulbright, I had the benefit to reflect on my initial experience and more fully understand the larger picture. I benefited from meeting with key individuals who dedicate much time and effort to promoting the status of these children and acting as their advocates. Our discussions and personal communication has given me more insight on the topic as well as better understanding of what is going on and how things can change. I feel that as a student and not a specialist, I cannot make assertions concerning the exact medical and mental state of disabled children in orphanages but I can share with you my journey so far as well as my concerns, hopes and reflections.

One of the first things I noticed when visiting Ukraine, was that I saw no one with disabilities. I saw a lot of elderly people who had difficulty moving about, but no where did I see a person with a physical disability easily navigating Kyiv. There is definitely a stigma in Ukraine that having a disability is some sort of embarrassment. I remember visiting my family in L’viv a few years ago and we were leaving my aunt’s apartment. When we got outside, someone yelled up from one of the apartments. My aunt waved and chatted with her neighbor yelling down to her. She later told me that this neighbor has a son, who is wheelchair bound and rarely leaves his apartment (the apt lacks a functioning lift).

I remember that moment so pointedly because I felt like the things preventing that man from interacting with his city were 1) a building that was not handicap accessible and 2) his parents’ fear that people would laugh at him. I’m not blaming his parents for not trying hard enough to overcome these obstacles, but its the overall way of thinking that gets to me, that in cases such as this young man’s its somehow better to avoid attacking the problems in order to protect the person with a disability. I see the reasoning in this way of thinking, but I feel that maintaing this opinion, is like mainitaining this vicious cycle, where you are afraid to be open with disability and so you hide it and in turn, this makes it even harder to be open about disability.

The stigma related to the difficulty of being disabled also shatters the hope of leading a fulfilling life as a person with mental and physical disabilities. I dealt with this attitude among orphanage caretakers who did not see the purpose in investing time and attention to children who were bedridden or who had trouble speaking. The caretakers felt like it was a waste of time to communicate to these children because nothing would come from it; the child would remain mute or bedridden until he/she died. What a fatalistic view? But, I think they thought that because they did not see children with disabilities enjoying life.

One organization I worked with tried to remedy this problem by sending orphanage staff and caretakers for training at a center in Kyiv, which works with children with mental disabilities. During these training sessions, caretakers and orphanage teachers, learn techniques and methods to help and teach these children. But during this, they also saw how the children at the center were functioning well. The center I am referring to is Djerela Center in Kyiv, they support families with children with mental disabilities, such as Down Syndrome and their services are basically free- I plan on doing a blog entry dedicated to this center. You can read about the director of the organization, Raisa Kravchenko, at the Insititute for Sustainable Communities: Coalition Stories page

http://tools.iscvt.org/advocacy/stories_from_the_field/coalitionstories

When the orphanage staff returned to the orphanage, they brought with them their new skills and ideas. They approached each child with more care because they believed in the child’s development and progress. This change in perspective had an obvious positive impact on the children. Fighting these stereotypes is a huge but essential hurdle in overcoming the fear that hinders the development of children with mental and physical disability.

Explanation of Ukrainian Orphanages

May 19th, 2008 by Katya

I have been to three Ukrainian orphanages: Zaluchya, Znamianka and Zhytomir. When explaining to people how orphanages are structured and the specifics concerning orphanages, I feel like I make people really confused. This entry is an attempt to be clear about exactly how orphanages in Ukraine work. Here goes:

When a child is given up for adoption, that child resides in a baby houses/budynky malyuky until 4 years of age. During this time, their mental and physical functions are evaluated and they are designated normal or “disabled” (if anyone finds offense or discrepancy with my terminology, please comment, I am always eager to learn about how other people see things).

The orphanages in Ukraine are divided into 4 levels. Level 1 is for children with physical disabilities but not mental disabilities; these children can usually attend school. Level 2 is for children with mental disabilities and/or emotional behavior issues but no physical disabilities. Level 3 is for children with mild physical and/or mental disabilites. Finally, level 4 is or children with critical physical and/or mental disabilities; often these children are bedridden. Children are sent to the orphanages based on their categorization. A child can live in the orphanage until he/she is 18 years old. After 18 years of age, young adults are forced to leave.

Three different government agencies oversee orphanages: The Ministry of Family, Youth and Sport, Ministry of Labor and Social Affairs, and the Ministry of Public Health. For example, the Ministry of F, Y, S oversees adoptions and the Ministry of PH is engaged during the time between birth and transfer to the orphanage. Each oblast (Ukraine is divided up into 25 oblasts, an oblast is similar to a state or province) upon receiving orders from the ministries, makes their own independent decisions with regard to the orphanage in their oblast, especially with respect to how the budget assigned to each orphanage can be used.

The Ukrainian government pays orphans a pension up until 18 years of age. If a child dies before 18 years of age, the pension money returns to the government.

Most professionals in this field believe that there are 200,000 orphans in Ukraine, with 20 level 4 orphanages housing 6,000 children.

Meeting in Dobb’s Ferry

May 7th, 2008 by Katya

I am really excited to be back on the bandwagon and telling people about the status of Ukrainian orphans. Last night, I spoke to a group of women who belong to a Ukrainian Women’s Association called Coyuz Ukrainoik. They asked me to speak and talk about my Fulbright experience in Ukraine and any information I had on orphans.

I believe that many Ukrainian Americans are aware of what is going in orphanage, but it is still tough news to share. My chats never end on a very uplifting note, even when I try to stay positive. Still, I think its really important to inform the international community. Also, the more I speak out about, the more I better understand what’s going on or learn to practice explaining it.

Still, I have difficulty communicating. I often find that when I answer any question relating to orphans, there is a general answer with a million exceptions and unknowns. For example, ” Are these truly orphans, do they have parents?” Answer: “Well yes, but some children do have parents who are unable to care for them. So they may come visit on weekends, once a month or once a year. Or maybe they’ll just drop into the child’s life out of nowhere asking to take the child home.” Its hard to have one outcome in these cases because each child has an individual story and background. That’s life I guess- often, unpredictable. And that’s Ukraine, often random and chaotic.

I think that helping orphans in Ukraine is an important project for the Ukrainian diaspora. As a large community of different talents and backgrounds, we can collaborate to alleviate the adversity these children face. My hope is that you reading this blog will become interested and even devise your own projects and make your own connections. And of course, email me your feedback or comment.

Additionally, last night I met a woman who adopted two children from Ukraine. Her children are 16 now and thriving. She explained that there were definitely things to overcome when she first brought her children to the US and they had to undergo an extensive rehabilitation and medical evaluation. I commend parents who adopt from Ukraine. Adopting a child is very emotional and physically draining process, not to mention expensive.

I would love feedback from parents who adopt children in Ukraine and abroad. What are your thoughts about the process? Why do you think its so expensive. I would like to dedicate an entry on this, but first I would love to hear your thoughts. Comment below.

Adaptive Equipment for Znamianka

May 5th, 2008 by Katya

My most recent endeavor is to find a sponsor to purchase and ship adaptive equipment to Znamianka orphanage in Ukraine.

Znamianka orphanage is located in the Kirovograd region of Ukraine, which is south of Kyiv, Ukraine’s capital city. The orphanage is a level 4 facility, meaning that children with severe mental and physical disabilities live here. In the past two years, Children of Chornobyl Relief and Development Fund has found a rehabilitationist to work with children there, which has made a huge impact on the mobility of many of the children there. However, many children would profit from using adaptive equipment to allow them to move around freely. Also, bed ridden children with the help of specific chairs, could engage in more activities. All of these improvements would give children more freedom and confidence about themselves.

The orphanage director is enthusiastic about working with NGO’s and therefore, this orphanage has seen a lot of transition in the past couple of years.

Right now, I have some ideas how we can get this project going, but I will definitely keep updating on the status of this project. See below for a list of equipment we are trying to get:

TherAdapt Secondary Transition Chair Tilt in Space Kit + Abduction Block http://www.adaptivemall.com/setrchtiinsp.html

Leckey Advance Seat, Size 2, Size 3 + Activity Tray
http://www.adaptivemall.com/leadsesi2.html

Feeder Seat, Size Small, Medium, Large
http://www.adaptivemall.com/tumforfeedse.html
http://www.specialkidszone.com/Product_Level3.asp?ProductID=915

Panda High-Low Seating&Positioning Chair (Manual Lift) Size 2, with Swing- away Shoulder Support, Pommel with Cover, Plastic Tray, Two-pieces Footrest
http://www.adaptivemall.com/pahisepochml.html
http://www.rehabmart.com/product/21820.htm

Tumble Form 2 Carrie Seating System, Preschool and Elementary Seats with Tray and Footrest
http://www.rehabmart.com/product/10417.htm

Leckey Prone Stander Size 1
http://www.adaptivemall.com/pronstansiz1.html

TherAdapt Tray Easels, Small Size
http://www.adaptivechild.com/index.asp?PageAction=VIEWPROD&ProdID=1150

AmTryke Hand Propelled, Regular Size with Saddle Seat + Vertical Hand Grips, Lateral Support, Plastic Footcups with Straps and Hardware
http://www.adaptivemall.com/am12regsiz.html
http://www.specialkidszone.com/Product_Level3.asp?ProductID=2312
http://www.rehabmart.com/product/17327.htm

Toddler AmTryke Therapeutic Tricycle
http://www.adaptivemall.com/toamthtr1.html
http://www.adaptivechild.com/index.asp?PageAction=VIEWPROD&ProdID=725

First Blog Entry and Bio

May 5th, 2008 by Katya

Hi everyone!

So this is my first attempt at a blog (yay!). My intentions in starting this blog is to easily communicate everything I learn with respect to orphans in Ukraine and let you know about the different initiatives aimed at helping orphans.

First off, I would like to introduce myself. My name is Katya and I have been involved with Ukrainian orphans since 2005. From 2006-2007, I lived in Ukraine doing a Fulbright focused on studying the impact of social institutions on disabled Ukrainian orphans. While in Ukraine, I worked closely with Children of Chornobyl Relief and Development Fund (CCRDF) and Maryana Voronovych (director of orphanage programs). During my time in Ukraine, I met a lot of dedicated individuals and organizations working with orphans in Ukraine, I traveled to different orphanages, and I amassed A LOT of information.

Now a year has gone by and I’m still drawn to what is going with those kids and I want to continue to help, so hence a blog to create awareness and get more people involved that want to help.

I am going to be posting information about Ukrainian orphans, ideas to help the children, contacts and organizations, my involvement, and anything else pertinent to this issue.

Get excited!