Executive Summary
This white paper discusses how the informal practices within Russian orphanages negatively impact children with disabilities when they turn eighteen. When these children with disabilities become young adults, they do not have a fair chance to be reintegrated into society. Commonly, the formal procedures within these orphanages are not followed, which leads to these young adults losing their power of attorney and being transferred to adult institutions against their will. The informal practices followed by many orphanages impact these young adults’ happiness and independence. To combat this, I recommend focusing on a small group of orphanages that care for children with disabilities in Russia and implementing a two-part experimental program. First, all teenagers will be educated on their legal rights so they have the knowledge and the agency to choose if they want to live independently once they turn eighteen. Second, all eighteen-year-olds who are leaving an orphanage will be interviewed to identify which procedures are being followed within the orphanages. If this experiment is successful after a year, I hope that the program will be permanently implemented and expanded throughout Russian orphanages to reinforce the legitimacy of the formal procedures.
Introduction
In Russia, it is common for newborn children with a range of disabilities to be taken by the government and cared for by state-run orphanages. While parents have the right to raise their children, regardless of any disabilities present, many parents believe they do not have sufficient resources to care for a child with disabilities. There can be concerns that their child will be worse off at home with their parents than in a state-run orphanage. In other cases, some parents may not understand their rights. Parents may forfeit their child to the state because they do not know their rights as parents or because they trust that the Russian government has their best interests at heart. This abuse of power has been documented since at least 1950 when the Soviet Union took conjoined twins Masha and Dasha Krivoshlyapova away from their mother by convincing her that her daughters had died after birth.[1]
Russian orphanages are state-run institutions that house and care for orphans, but also children with various disabilities. It is estimated that thirty percent of children with disabilities in Russia live in orphanages.[2] Since the orphanages are state-funded institutions, they have to abide by the rules implemented by the Russian government. In a Russian orphanage, a person with disabilities is allowed to live independently once they turn eighteen as long as they can prove they can care for themselves.[3] They are also granted access to housing and a disability pension. However, it is very common that orphanage administrators do not allow that to transpire. Within Russian orphanages, there are deeply entrenched informal practices that take the place of and overpower the formal institution. In this instance, a formal institution is a set of rules that is enforced by the state and is accepted by the majority as legitimate.[4] Conversely, informal practices within a formal institution are activities performed by a person or group that evade the rules created by an overarching power (in this case the Russian government).[5] While not all informal practices are harmful, they can perpetuate corrupt and detrimental practices that have lasting effects. Helmke and Levitsky’s typology on informality explains one way these informal practices can be characterized. [6] In the case of orphanage officials, the formal institution is weak and unable or unwilling to regulate prohibited behavior. Therefore, the informal practices of not informing young adults of their rights or illegally taking away their power of attorney can be viewed as competing with the formal institution. The informal practices are weakening the power of the formal institution in the orphanages. From the view of the orphanage personnel and the Russian government, these informal practices could also be used in a substitutive manner. The orphanages may not be able to achieve their goals formally, so the informal practices are a way of supporting the orphanages’ agenda.
The Transition to Adulthood
Within Russian orphanages, there are many bureaucratic levels to how the orphanages operate. However, the informal practices within the Russian orphanages have more power over procedures and decision-making than the formal institution does. Children with disabilities in Russian orphanages should be receiving care, but instead, they are faced with neglect and maltreatment. In addition, children with disabilities are less likely to be socialized with other children and receive a proper education in the orphanage. Within many orphanages, young adults are faced with an immense problem: losing their power of attorney. A person’s power of attorney grants themselves or someone else the ability to make legal decisions for them. Once their power of attorney is lost, they face living in an adult institution for the rest of their lives. In this paper, I am going to focus on how the formal procedures of reintegrating young adults with disabilities into life outside of the orphanages is overpowered by informal practices. I hypothesize that these informalities are hindering young adults from being reintegrated into society and taking their opportunities away to live more independently and happily.
Research and Findings
It is important to note that it is difficult to find primary sources from orphanage personnel and the Russian government regarding the illegal or manipulated transfers of young adults with disabilities to adult institutions. It can be challenging to find transparent information concerning activities that defy the written laws. The best way to understand how Russian orphanages affect the independence and happiness of Russian adults with disabilities is to hear from them directly. I will be using interviews conducted by Human Rights Watch (HRW). HRW interviewed a group of adults with disabilities in St. Petersburg and Leningrad who lived in orphanages as a child to understand their experiences after turning eighteen.[7] Four main informal practices take place in orphanages that do not follow the formal rules of transition from childhood to adulthood for young adults with disabilities.
Problem 1:
First, orphanage administrators will tell the young adults that they will be transferred to an adult institution once they turn eighteen without educating them on their legal rights. For orphans who are poorly educated or who do not have anyone to advocate for them, this method can succeed. Young adults Anastasia and Misha, both with physical and developmental disabilities, had very similar experiences upon turning eighteen.[8] The orphanages did not educate either of them on their rights when becoming adults and transferred them to adult institutions without any explanation. Many orphanages can succeed in doing this due to the lack of education, transparency, and oversight within the orphanages. The lack of transparency does now allow for young adults who envision a future outside of an institution to prosper because their rights are not explained to them and are frequently violated.
Problem 2:
Second, orphanage administrators will coerce or force these young adults to sign paperwork to give up their power of attorney. Once that paperwork is signed, they have essentially consented to their transfer and can be transferred to an adult institution upon turning eighteen. Karina, a young adult who never learned how to read because she was not taught, could not read her transfer papers to an adult institution.[9] She also did not understand her legal rights. When the orphanage administrator told her it was mandatory to sign the paperwork, Karina did. She felt like she had no other choice.
Problem 3:
Third, the court system indirectly supports orphanages by taking these adults’ power of attorney away. Young adults with disabilities have the right to live independently if they can prove to a court that they can take care of themselves. The court system is part of the formal institution, but it manipulates the formal rules and makes it challenging for adults with disabilities to successfully retain their power of attorney. Taking away a young adult’s power of attorney removes their ability to reintegrate themselves into society, live independently, work, and build meaningful relationships.
Alexei, a young man who spent his childhood in an orphanage, stated that the court examination to retain his legal capacity tested his knowledge of daily life outside of the orphanage.[10] However, Alexei did not grow up the same way children outside of orphanages did. So, he did not know how to answer questions about daily life. This led to him losing his power of attorney and his unfortunate transfer to an adult institution. Alexei is now living under conditions as an adult that are very restrictive and do not allow him to live independently. Another adult, Tanya, had a similar experience when confronted with the examination to determine her eligibility to live on her own. Tanya not only lacked the knowledge of daily life outside of an institution, but she was also deaf. The court understood that Tanya was partially deaf and that she did not have hearing aids, but it did not consider that information when reviewing her examination. Tanya’s description is devastating as she describes her inability to pursue her interests because she is stuck in an institution. She bleakly states, “‘Here there is nothing. I don’t want to live anymore.’”[11]
Problem 4:
Lastly, these informal practices punish adults with disabilities who try to advocate for themselves. Dima, a young man with a developmental disability, was punished for hiring a lawyer and challenging the loss of his legal rights. There are barriers to seeking independence, and then there are consequences to working around those barriers. Even the young adults who can retain their power of attorney still face repercussions for leaving the orphanages and escaping life from an adult institution. Vlad, a blind man, left the orphanage but was still dealing with problems from the orphanage director. For almost three weeks, the director stole a percentage of Vlad’s disability pension that he received from the government.
Possible Solutions
Understanding the experiences of this group of Russians with disabilities who have lived or currently live in institutions illuminates the fact that the informal practices within Russian orphanages are indeed hindering young adults from being reintegrated into society and living more independently. The personal experiences of the interviewed adults clearly illustrate the problems and shortcomings of Russian orphanages and adult institutions, so it is important to create possible solutions that directly address those problems.
Lesson 1: The Lack of education on one’s legal rights as an adult with disabilities has negative impacts on their independence.
Solution 1: While goals that aim to improve academic education in orphanages go beyond the scope of this paper, these young adults need to receive mandatory education on their legal rights before turning eighteen. From the HRW interviews, at least half explained that their lack of knowledge about their legal rights affected their lives after they turned eighteen. If all children with disabilities who can prove that they can live independently are informed of their options once they become an adult, the number of young adults living independently should increase dramatically. When people have agency, they are better able to control their lives. Sveta, who grew up in an orphanage, is a great example of this. Sveta learned from her grandmother to never sign a document that you have not read. Even though Sveta could not read due to her impaired vision, she did not sign the document which would have transferred her to an adult institution.[12] Sveta was fortunate to have learned this information from her family, and it positively impacted her transition into adulthood. If all children with disabilities are given the same opportunity, transfers to adult institutions could decrease. It is important to note that without reliable and legitimate oversight, orphanages may not comply with the education program. To avoid that risk and ensure compliance, a third party should audit the orphanages’ implementation of education programs.
Lesson 2: There is insufficient knowledge about how often these informal practices are taking place.
Solution 2: Russian orphanages should require an exit interview for the young adults when they leave the orphanage at eighteen to create oversight of what takes place during the transition to adulthood. The interview should contain whether or not the young adult with disabilities plans to live independently or accept a transfer to an adult institution. If they plan to live independently, it is important to know why and how they achieved that outcome. If the adults are being transferred to an adult institution, the interviewer needs to understand why it is happening. Reasons can include the orphanage not informing the adults of their legal rights, forcing the adults to sign paperwork to be transferred to an adult institution, and courts manipulating court interviews. If there can be a deeper understanding of why adults with disabilities are being transferred to adult institutions, we can better understand how the orphanages are operating and hold them accountable for their actions.
Lesson 3: These informal practices will continue if Russia is not held accountable for its actions.
Solution 3: Russia is part of various conventions to protect the rights of children and people with disabilities. Russia signed the Convention on the Rights of Persons with Disabilities (CRPD) created by the United Nations (UN) which aims to protect people with disabilities and aid them in being contributing members of society.[13] Russia is also included in the Convention on the Rights of the Child (CRC) created by UNICEF which aims at providing rights to children so they can feel empowered and make decisions on their own.[14] While the International Covenant on Civil and Political Rights (ICCPR) does not specifically address children and disabilities, their goal is to create conditions “whereby everyone may enjoy his civil and political rights, as well as his economic, social and cultural rights.”[15] Since Russian orphanages are violating the rules of these conventions, Russia should be reprimanded by the UN and UNICEF and risk losing its memberships. Even though Russian orphanages may want to continue to work around formal procedures, shame from the global community may influence Russia to be compliant.
Lesson 4: It will take a combination of solutions to combat the informal practices in Russian orphanages.
Solution 4: To best assist young adults with disabilities in achieving happiness and independence outside of an institution, accountability and transparency within the orphanages need to be made a top priority. Given the previously recommended solutions, I recommend taking a two-part approach by implementing a joint education and exit interview program.
Considering that the CRPD is a UN convention and that the UN has international legitimacy, I believe a team created by the CRPD could be a strong candidate for running the experimental program. The first part of the program will consist of program educators creating courses that aim to inform teenagers with disabilities about their legal rights as an adult. The second part of the program will consist of conducting exit interviews before the young adults are reintegrated into society or are transferred to adult institutions. This will help the CRPD see if the orphanage is following the formal procedures, or if informal practices are prevailing and inhibiting the young adults’ chances of living independently. I suggest combining solutions 1 and 2 because neither on their own will be able to counteract the informal practices in Russian orphanages. A magic bullet solution will not have the capacity to address these large, systemic problems that Russian orphanages face.
Solution 4 Implementation
Instead of implementing this program across a wide number of orphanages within Russia, I believe it would be beneficial to first test this program on a smaller scale by selecting a limited number of orphanages. If an orphanage is unwilling to cooperate with the CRPD, it will risk losing its membership in the CRPD and future UN conventions. While it is difficult to find data on the number of state-run orphanages in Russia, it is estimated that there are 400,000 to 1 million orphans in Russia.[16] Given how large the population of orphans is, I think the program should start with a group of 10,000 orphans (1% of the largest estimate and 2.5% of the lowest estimate of orphans in Russia). Given the financial resources and labor necessary to lead the education programs and conduct the exit interviews, it makes sense to begin the project on a smaller scale. There are going to be challenges when implementing the program, so it is crucial to identify solutions to any major problems early on so those problems are not perpetuated when the program is hopefully expanded to more orphanages. After a year of implementing the program, the members of CRPD conducting the program can evaluate the efficiency and ability of the program to meet its goals. This will allow the program to make adjustments and improve problem areas while also seeing if the orphanage administrators continued to follow informal practices or if they transitioned to formal procedures.
Considerations
It is important to note other factors connected to this topic that I did not cover and that have important implications for disability rights in Russia.
With the war in Ukraine, there is going to be less transparency in various state-run sectors in Russia. Considering how children with disabilities in orphanages faced several hardships before the war, I would predict the war would perpetuate a lack of transparency in orphanages. I would also predict that the resources needed to continue a war divert resources from other government institutions, like orphanages, to the military.
While researching, I struggled to find information on why orphanage administrators are inclined to act the way they do. Conducting follow-up research to try and find the motivations behind these administrators’ actions is key to understanding why the orphanage system functions the way it does and how it can be changed.
Concerning my recommended solutions, there are potential roadblocks to these approaches. First, it would be challenging to find enough trustworthy people to conduct legitimate interviews at the orphanages. There is no guarantee that an outside party would fulfill its requirements or provide accurate data. It is important that there is balance between Russian orphanages having freedom to choose how they operate and oversight so Russian orphanages implement change. With too much or too little oversight, a principal-agent problem could arise. Second, the data collected could be obstructed and affect the oversight. This could result in an incorrect understanding of the efficiency of this program. Third, it would be extremely costly to hire and train enough workers to serve all of the state orphanages. Lastly, young adults may fear telling the truth in these interviews due to threats of retaliation from the orphanage administrators.
[1] Jeffrey M. Craig, “A Twin Tale to Keep You up at Night,” Science 357, no. 6352 (2017): 653, https://doi.org/10.1126/science.aao1869.
[2] Corey Flintoff, “For Russian Kids, a Disability Often Means Life in an Orphanage,” NPR, 2014, https://www.npr.org/sections/parallels/2014/11/04/358315057/for-russian-kids-a-disablity-often-means-life-in-an-orphanage.
[3] Corey Flintoff, “For Russian Kids, a Disability Often Means Life in an Orphanage,” NPR, 2014, https://www.npr.org/sections/parallels/2014/11/04/358315057/for-russian-kids-a-disablity-often-means-life-in-an-orphanage.
[4] Gretchen Helmke and Steven Levitsky, “Informal Institutions and Comparative Politics: A Research Agenda,” Perspectives on Politics 2, no. 04 (2004): 727, https://doi.org/10.1017/s1537592704040472.
[5] Abel Polese, “What Is Informality? (Mapping) ‘the Art of Bypassing the State’ in Eurasian Spaces - and Beyond,” Eurasian Geography and Economics 64, no. 3 (2021): 324, https://doi.org/10.1080/15387216.2021.1992791.
[6] Gretchen Helmke and Steven Levitsky, “Informal Institutions and Comparative Politics: A Research Agenda,” Perspectives on Politics 2, no. 04 (2004): 728-730, https://doi.org/10.1017/s1537592704040472.
[7] “Russia: Adult Prospects Dim for Youth with Disabilities,” Human Rights Watch, 2020, https://www.hrw.org/news/2018/12/06/russia-adult-prospects-dim-youth-disabilities.
[8] “Russia: Adult Prospects Dim for Youth with Disabilities,” Human Rights Watch, 2020, https://www.hrw.org/news/2018/12/06/russia-adult-prospects-dim-youth-disabilities.
[9] “Russia: Adult Prospects Dim for Youth with Disabilities,” Human Rights Watch, 2020, https://www.hrw.org/news/2018/12/06/russia-adult-prospects-dim-youth-disabilities.
[10] “Russia: Adult Prospects Dim for Youth with Disabilities,” Human Rights Watch, October 28, 2020, https://www.hrw.org/news/2018/12/06/russia-adult-prospects-dim-youth-disabilities.
[11] “Russia: Adult Prospects Dim for Youth with Disabilities,” Human Rights Watch, 2020, https://www.hrw.org/news/2018/12/06/russia-adult-prospects-dim-youth-disabilities.
[12] “Russia: Adult Prospects Dim for Youth with Disabilities,” Human Rights Watch, 2020, https://www.hrw.org/news/2018/12/06/russia-adult-prospects-dim-youth-disabilities.
[13] “Convention on the Rights of Persons with Disabilities (CRPD) | Division for Inclusive Social Development (DISD),” n.d., https://social.desa.un.org/issues/disability/crpd/convention-on-the-rights-of-persons-with-disabilities-crpd.
[14] “Convention on the Rights of the Child,” UNICEF, n.d., https://www.unicef.org/child-rights-convention.
[15] United Nations, “International Covenant on Civil and Political Rights,” 1967, https://treaties.un.org/doc/treaties/1976/03/19760323%2006-17%20am/ch_iv_04.pdf.
[16] “Russia without Orphans,” World Without Orphans, n.d., https://worldwithoutorphans.org/about/national-teams/country-movements/people_organization/13512.