Institutionalization of children with disabilities in Russia

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Russian Orphanage Russia orphanage.jpg
Russian Orphanage

Institutionalization of children with disabilities in Russia is the placement of children, who have been abandoned or whose parents cannot support them, into a facility which can be similar to an orphanage. This often occurs in countries where alternative methods of care are not available. [1] The definition of an institution can be ambiguous; the "Report of the Ad Hoc Expert Group on the Transition from Institutional to Community-based Care" [2] defines an institution based on the following guidelines:

Contents

Soviet ideology of institutionalization

In 1917, the Russian Revolution resulted in Soviet ideology that centered around the idea of creating a society free of anomalies[ citation needed ]. As such, children born with disabilities were considered "defective", and the policy on "defectology" was developed through resolutions passed by the Council of Ministers of the USSR. [7] According to law, parents had to send their children to institutions, as familial care was viewed as inadequate for the upbringing of children with special needs; the state found it necessary to correct such disabilities, and the provision of necessary treatment was promised. Such policies were influenced by Lev Vygotsky's Institute of Defectology, which was based on the idea that all children should be corrected to have normal functioning.[ citation needed ] If they were unable to participate and meet the requirements of "normal" standards when attending school, they were considered to be "uneducable" and were subject to a life of institutionalization, isolated and segregated from the public. Schools did not have the flexibility to adjust to their needs. The establishment of social segregation was widely accepted, and a distinct separation between individuals with disabilities and the rest of society was part of everyday life in Russia. Early isolation of these individuals was not specific to the early years, as it continued unto adult life due to laws that grouped citizens with disabilities into one area of employment, further alienating them from society. [6]

Effects of institutionalization on children

The 1998 report "Findings and Recommendations of a UNICEF Sponsored Fact-finding Mission to the Russian Federation" found instances of children left neglected and constricted with restraints, as well as cases of stereotypies, such as self-inflicted physical harm and rocking in Russian institutions. [8] Also observed was the confinement of children to a bed-ridden state for hours and days and the segregation of older children into separate institutional classrooms, where they were subject to inadequate education. The report attributed such conditions to lack of necessary resources and overworked staff, who are unable to provide the necessary care to all children. [9] Institutionalized children were often confined to their beds or cribs by staff if the child was considered contagious of an infectious disease or if they were too weak to be moved from their bed. Children of highest concern to orphanage administrators were forcefully bed-ridden and often restricted with rags of fabric to cribs in designated "lying-down rooms". Its common that a disabled child in an institution is considered contagious because of their mental conditions including children diagnosed with schizophrenia. Orphanage staff neglect the children with the belief that care will “spoil” the children (Human Rights Watch report). Children are left deprived of experiencing being outdoors and being given emotional attention. [10]

Research related to institutional care has been conducted in various European countries and found that these types of environments lead to a plethora of negative consequences. The following are common effects:

Current situation

In 1993, the Russian constitution incorporated articles that included protection for children. The implementation of these articles were to be secured through various regulations, as well as the Federal Law on Basic Guarantees of the Rights of the Child, which was initiated on July 21, 1998, and incorporates the principles outlined in the Convention on the Rights of the Child. [13] Despite these laws, services in Russia for children with disabilities reflect the attitudes established during the Soviet Era, as parents report that they are still encouraged to leave their children to institutional care. Recently, more families have ignored this advice and opt to care for their children even though some have had to follow the initial advice at a later time due to financial difficulties. [6] Mothers also report facing general hostility from society when opting to take care of their children instead placing them in a government facility, and stigmas concerning disability are still prevalent in Russian society. [14]

As of 2013, the Russian federal law, “On Education”, gave children with disabilities the right to attend general education schools alongside other children without disabilities attending the closest school to home.

Following the 2013 developments, 10 St. Petersburg schools are being developed with inclusive education programs for children with disabilities, with funding of 9.7 million rubles, equivalent to ₽19.4 million in 2023. [15] [16] Children with disabilities are gradually accessing more accommodations to regular schooling and college education within recent years.

The Russian Labor and Social Protection Ministry report that amongst the people in Russia who have received higher education, disabled children have at a rate of “two times lower than the number of non-disabled people”. [17]

Government provisions

When newborns to four-year-olds are abandoned by their parents for various reasons, they are taken to Baby Houses, which are under the regulation of the Ministry of Health. Those that are four years of age are then evaluated to determine what institution they should be assigned. Institutions regulated by the Ministry of Education and Science house those deemed educable, and other children, determined to be uneducable, go to institutions which are supervised by the Ministry of Labor and Social Development. As adults, those categorized as uneducable transfer to an adult institution, where some facilities leave individuals to live in a bed-ridden state. [6]

Once children with disabilities in Russian orphanages turn 18, many are moved to adult closed state institutions without the consent from the young person.

A Human Rights Watch study suggested that:

The 2020 Human Rights Watch study also indicated that there are many instances of children living in Russian orphanages being coerced into signing paperwork to join an adult institution without being offered support or knowledge of how to live independently. Some young adults were driven to an adult institution without notice or consent. [18]

The Children of Pavlovsk organization was developed by Margarete von der Borchas, a charity established in 1992 to help children who have reached 18 years old and are unable to continue to live in Russian orphanages. “our goal is to transform these institutions into institutions that support families." [19]

Special education

According to the Library of Congress, about 1.6 million children in Russia need access to special education. Despite legal rulings that allow children to attend school and mandate that specialized education be available, most do not receive a public education. Advances, however, have been made to provide rehabilitation services according to disability. [13] Eight schools exist that serve individuals with the following disabilities: severe retardation, various ranges of blindness and deafness, as well as severe motor problems. [20] The Library of Congress reports that "In 2006, Russia had 1,373 boarding schools for 170,000 children with speech, hearing, and language pathology, vision impairment, mental retardation, skeletal diseases, and tuberculosis; and 1,946 day schools for 236,000 disabled students." [13] Primarily, though, children are placed into institutions at an early age. Since 1993, the Ministry of Education made a recommendation regarding the creation of the availability of classes for children with learning disabilities, but this sort of social change is still in progress. [20]

Initiatives

International proposed plans

Several international bodies have created principles that uphold the rights of children with disabilities. [3] :121 In 2008, World Health Organization's Better Health, Better Lives Initiative states that its goal is to: "[E]nsure that all children and young people with intellectual disabilities are fully participating members of society, living with their families, integrated in the community and receiving health care and support proportional to their needs." The Convention on the Rights of Persons with Disabilities has created the following articles outlining the rights of children with disabilities, which also protect against institutionalization.

Concern related to the violation of the CRPD's articles led to a United Nations General Day of Discussion, which further led to the UN guidelines on the Alternative Care of children in 2009. Paragraph 22 states: "While recognizing that residential care facilities and family-based care complement each other in meeting the needs of children, where large residential care facilities (institutions) remain, alternatives should be developed in the context of an overall deinstitutionalization strategy, with precise goals and objectives, which will allow for their progressive elimination." [22] In order to adhere to the guidelines and end the practice of institutionalization, the Europe Regional Office branch of the United Nations Human Rights created a set of suggested solutions in their report "The Rights of Vulnerable Children Under the Age of Three: Ending their placement in institutional care". These solutions include:

Russian government

The United States Library of Congress reports that "[u]ntil 1979, disabled children were not legally recognized in the Soviet Union because disability was defined as an inability to perform professional functions due to a sickness or trauma." [13] As a result, no benefits were given to persons with disabilities. On December 14, 1979, children under the age of sixteen were able to obtain health benefits if they had a certain disease, as outlined by the Ministry of Health Care Regulation No. 1265. [13] The ratification of the 1993 Russian Constitution initiated advancements in human rights for all by outlining guidelines that guarantee all individuals freedoms. While institutionalization is still widespread, when children are to be assessed according to their abilities, the parents are ensured certain guarantees. Parents must be informed of the evaluation and they must agree with the determined institution before the child is relocated. The adequate placement of children into proper institutions may not be accurate, as necessary resources are sometimes unavailable. [13]

United States adoption

In a 2005 study of 105 "Postinstitutionalized Children of Intercountry Adoption" more than half of them adopted in the United States were from China and Russia. The children from Eastern Europe initially "exhibited 1 month of delayed growth for every 5 months they had spent institutionalized. They also demonstrated delayed fine motor (82%), gross motor (70%), language (59%), and social–emotional (53%) skills. [23] In post-adoption analysis, the study found that 60.4% of adopting parents reported "no continuing medical or developmental difficulties for their children." While this study reported findings collected from 105 children, its authors stated that much more information must be gathered to assess the changes adoption makes in the development and growth of children who have been institutionalized previously. [23]

Related Research Articles

<span class="mw-page-title-main">Orphanage</span> Residential institution devoted to the care of orphans

An orphanage is a residential institution, total institution or group home, devoted to the care of orphans and children who, for various reasons, cannot be cared for by their biological families. The parents may be deceased, absent, or abusive. There may be substance abuse or mental illness in the biological home, or the parent may simply be unwilling to care for the child. The legal responsibility for the support of abandoned children differs from country to country, and within countries. Government-run orphanages have been phased out in most developed countries during the latter half of the 20th century but continue to operate in many other regions internationally. It is now generally accepted that orphanages are detrimental to the emotional wellbeing of children, and government support goes instead towards supporting the family unit.

<span class="mw-page-title-main">Foster care</span> System of non-parental temporary child-care

Foster care is a system in which a minor has been placed into a ward, group home, or private home of a state-certified caregiver, referred to as a "foster parent", or with a family member approved by the state. The placement of a "foster child" is normally arranged through the government or a social service agency. The institution, group home, or foster parent is compensated for expenses unless with a family member.

<span class="mw-page-title-main">Individuals with Disabilities Education Act</span> United States law

The Individuals with Disabilities Education Act (IDEA) is a piece of American legislation that ensures students with a disability are provided with a Free Appropriate Public Education (FAPE) that is tailored to their individual needs. IDEA was previously known as the Education for All Handicapped Children Act (EHA) from 1975 to 1990. In 1990, the United States Congress reauthorized EHA and changed the title to IDEA. Overall, the goal of IDEA is to provide children with disabilities the same opportunity for education as those students who do not have a disability.

<span class="mw-page-title-main">Trafficking of children</span> Form of human trafficking

Trafficking of children is a form of human trafficking and is defined by the United Nations as the "recruitment, transportation, transfer, harboring, and/or receipt" kidnapping of a child for the purpose of slavery, forced labour, and exploitation. This definition is substantially wider than the same document's definition of "trafficking in persons". Children may also be trafficked for adoption.

Developmental disability is a diverse group of chronic conditions, comprising mental or physical impairments that arise before adulthood. Developmental disabilities cause individuals living with them many difficulties in certain areas of life, especially in "language, mobility, learning, self-help, and independent living". Developmental disabilities can be detected early on and persist throughout an individual's lifespan. Developmental disability that affects all areas of a child's development is sometimes referred to as global developmental delay.

Disruption is ending an adoption. While technically an adoption is disrupted only when it is abandoned by the adopting parent or parents before it is legally completed, in practice the term is used for all adoptions that are ended. It is usually initiated by the parents via a court petition, much like a divorce, to which it is analogous.

A group home, congregate living facility, care home, adult family home, etc., is a structured and supervised residence model that provides assisted living and medical care for those with complex health needs. Traditionally, the model has been used for children or young people who cannot live with their families or afford their own homes, people with chronic disabilities who may be adults or seniors, or people with dementia and related aged illnesses. Typically, there are no more than six residents, and there is at least one trained caregiver there 24 hours a day. In some early "model programs", a house manager, night manager, weekend activity coordinator, and four part-time skill teachers were reported. Originally, the term group home referred to homes of 8 to 16 individuals, which was a state-mandated size during deinstitutionalization. Residential nursing facilities, also included in this article, may be as large as 100 individuals in 2015, which is no longer the case in fields such as intellectual and developmental disabilities. Depending on the severity of the condition requiring one to need to live in a group home, some clients are able to attend day programs and most clients are able to live normal lifestyles.

Disability Rights International (DRI), formerly Mental Disability Rights International, is a Washington, DC–based human rights advocacy organization dedicated to promoting the human rights and full participation in society of persons with disabilities worldwide. DRI documents conditions, publishes reports, and promotes international oversight of the rights of persons with disabilities.

<span class="mw-page-title-main">Intellectual disability</span> Generalized neurodevelopmental disorder

Intellectual disability (ID), also known as general learning disability and mental retardation, is a generalized neurodevelopmental disorder characterized by significant impairment in intellectual and adaptive functioning that is first apparent during childhood. Children with intellectual disabilities typically have an intelligence quotient (IQ) below 70 and deficits in at least two adaptive behaviors that affect everyday, general living. According to the DSM-5, intellectual functions include reasoning, problem solving, planning, abstract thinking, judgment, academic learning, and learning from experience. Deficits in these functions must be confirmed by clinical evaluation and individualized standard IQ testing. On the other hand, adaptive behaviors include the social, developmental, and practical skills people learn to perform tasks in their everyday lives. Deficits in adaptive functioning often compromises an individual's independence and ability to meet their social responsibility.

Child migration or "children in migration or mobility" is the movement of people ages 3–18 within or across political borders, with or without their parents or a legal guardian, to another country or region. They may travel with or without legal travel documents. They may arrive to the destination country as refugees, asylum seekers, or economic migrants.

<span class="mw-page-title-main">Deinstitutionalisation (orphanages and children's institutions)</span> Process of closing down orphanages

Deinstitutionalisation is the process of reforming child care systems and closing down orphanages and children's institutions, finding new placements for children currently resident and setting up replacement services to support vulnerable families in non-institutional ways. It became common place in many developed countries in the post war period. It has been taking place in Eastern Europe since the fall of communism and is now encouraged by the EU for new entrants. It is also starting to take hold in Africa and Asia although often at individual institutions rather than statewide. New systems generally cost less than those they replace as many more children are kept within their own family. Although these goals have been made internationally, they are actively being working towards as reform and new reforms are put into practice slowly as is fit for each country.

In the United States there are approximately 50 million people who are caring at home for family members including elderly parents, and spouses and children with disabilities and/or chronic illnesses. Without this home-care, most of these cared for would require permanent placement in institutions or health care facilities.

Street children or orphans in some Eastern European countries face problems such as malnutrition, HIV, lack of resources, victimization though child sex tourism, social stigmatization and discrimination.

The Republic of Palau has had a turbulent history over the last 450 years, with many states claiming ownership over them. Since World War II, the Islands came under United Nations' trusteeship and were administered by the United States. After becoming a sovereign state in 1994, Palau joined the UN and ratified the Convention on the Rights of the Child in 1995, the Convention on the Rights of Persons with Disabilities and the optional protocol to the latter in 2013. In 2011, the International Covenant on Civil and Political Rights in 2011 and other core human rights treaties were signed. These treaties are yet to be ratified.

Disability in China is common, and according to the United Nations, approximately 83 million people in China are estimated to have a disability.

<span class="mw-page-title-main">Armenia and the United Nations</span> Armenia at the United Nations

Armenia was admitted into the United Nations on 2 March 1992, following its independence from the Soviet Union. In December 1992, the UN opened its first office in Yerevan. Since then, Armenia has signed and ratified several international treaties. There are 20 specialized agencies, programs, and funds operating in the country under the supervision of the UN Resident Coordinator. Armenia strengthened its relations with the UN by cooperating with various UN agencies and bodies such as the International Monetary Fund, the World Bank, the World Food Programme, and with the financial institutions of the UN. Armenia is a candidate to preside as a non-permanent member of the UN Security Council in 2031.

Disability affects many people in Zimbabwe in both rural and urban areas. In spite of services provided by the government, philanthropists and welfare agencies, people with disabilities and their families often face several barriers. Philanthropist, Jairos Jiri, started services for people with disability in Zimbabwe in the 1940s. He is regarded as the father or founder of disability work in Zimbabwe.

Protection of children’s rights is guaranteed by the Constitution of the Republic of Azerbaijan and a number of other laws. Children’s rights embrace legal, social and other issues concerning children.

People with disabilities face 1.5 times more violence than people without disabilities. The perpetrators are often people known to the person with disabilities, such as their partners, family members, friends, or acquaintances. It is estimated that 15% of the world's population lives with disability and are more likely to be poor and socially excluded. Thus violence against people with disabilities has many dimensions.

<span class="mw-page-title-main">Impact of the COVID-19 pandemic on people with disabilities</span>

Individuals with disabilities are more susceptible to contracting COVID-19 and have higher mortality rates compared to those without disabilities. This is particularly true for people with intellectual and developmental disabilities, those residing in care facilities, and women with disabilities. Individuals with disabilities face heightened risks of mental health issues related to the pandemic, such as increased feelings of loneliness and isolation. They were also more likely to face domestic violence and abuse during the pandemic. People with disabilities are more likely to experience unemployment as a result of the pandemic and may require changes to the types of accommodations they require for work. Children with disabilities experience complications in their educational programming. Remote learning poses a host of challenges for children with disabilities, including disruptions to physical and occupational therapies and access to assistive technologies.

References

  1. Morrison, Lynn. "Ceausescu's Legacy: Family Struggles and Institutionalization of Children in Romania". Journal of Family History: 171.
  2. "Report of the Ad Hoc Expert Group on the Transition from Institutional to Community-based Care". Directorate-General for Employment, Social Affairs and Equal Opportunities. European Commission. Retrieved 30 November 2013.
  3. 1 2 3 4 5 6 Mulheir, Georgette (2012). "Deinstitutionalisation-A Human Rights Priority for Children with Disabilities" (PDF). The Equal Rights Review. 9. Retrieved 20 October 2013.
  4. "The Convention on the Rights of the Child". UNICEF: Office of Research. UNICEF. Retrieved 20 October 2013.
  5. "Committee on the Rights of the Child, General Comment No. 9, The rights of children with disabilities (Forty-third session, 2007), U.N. Doc. CRC/C/GC/9 (2007)". University of Minnesota: Human Rights Library. University of Minnesota. Retrieved 30 November 2013.
  6. 1 2 3 4 Rosenthal, Eric; Elizabeth Bauer; Mary F. Hayden; Andrea Holley (1999). "Implementing the Right to Community Integration for Children with Disabilities in Russia: A Human Rights Framework for International Action". Health and Human Rights. 4 (1): 83–84. doi:10.2307/4065169. JSTOR   4065169. PMID   10438556.
  7. Korkunov, Vladimir V.; Alexander S. Nigayev; Lynne D. Reynolds; Janet W. Lerner (March–April 1998). "Special education in Russia: History, reality, and prospects". Journal of Learning Disabilities. 31 (2): 186–192. doi:10.1177/002221949803100209. PMID   9529789. S2CID   44517080.
  8. Koloskov, Sergey. "The Desperate Situation of Children with Disabilities in Russian Institutions". Disability World. Archived from the original on 3 December 2013. Retrieved 20 October 2013.
  9. "Findings and Recommendations of a UNICEF Sponsored Fact-finding Mission to the Russian Federation 20th October through 6th November 1998". Children in Russia's Institutions: Human Rights and Opportunities for Reform. Mental Disability Rights International. November 1998. Retrieved 30 November 2013.
  10. admin (19 December 2016). "Individuals With Disabilities In Russia". Special Needs Resource. Retrieved 17 December 2023.
  11. 1 2 3 "A Study of Institutional Childcare in Central and Eastern Europe and the Former Soviet Union" (PDF). Family Matters. Every Child. Archived from the original (PDF) on 11 November 2011. Retrieved 20 October 2013.
  12. Miller, Laurie (April 2000). "Initial assessment of growth, development, and the effects of institutionalization in internationally adopted children". Pediatric Annals. 29 (4): 224–232. doi:10.3928/0090-4481-20000401-08. PMID   10782478.
  13. 1 2 3 4 5 6 "Children's Rights: Russian Federation". Library of Congress. 3 May 2012. Retrieved 20 October 2013.
  14. Iarskaia-Smirnova, Elena (1999). ""What the Future Will Bring I Do Not Know": Mothering Children with Disabilities in Russia and the Politics of Exclusion". Frontiers: A Journal of Women Studies. 20 (2): 68–86. doi:10.2307/3347014. JSTOR   3347014.
  15. 1548 to 1675 A.G. Vinogradov, National economy of Russia 1515-2015 , 1703 to 1913: Mironov, B. (2010). Wages and Prices in Imperial Russia, 1703-1913. The Russian Review, 69(1), 47-72. Retrieved May 21, 2021, 1914 to 1956: Efremov, Steven M., The Role of Inflation in Soviet History: Prices, Living Standards, and Political Change (2012), 1956 to 1984: CIA, USSR: Estimates of Personal Incomes and Savings 1985 to 1990: Stanley Fischer, 1994. Russia and the Soviet Union Then and Now, NBER Chapters, in: The Transition in Eastern Europe, Volume 1, Country Studies, pages 221-258, National Bureau of Economic Research, Inc., 1991-2023: Federal State Statistics Service, Indices of consumer prices for goods and services in the Russian Federation, monthly data (since 1991)
  16. Liveable disabilities: Life courses and opportunity structures across time (Report). CORDIS. 1 February 2016. doi:10.3030/647125.
  17. Vang, Houa (2023). "Unequal Embeddedness: Universities' Influence on Underrepresented Students' Knowledge of and Access to Graduate School". Proceedings of the 2023 AERA Annual Meeting. Washington DC: AERA. doi:10.3102/2018883. S2CID   261318996.
  18. "Russia: Adult Prospects Dim for Youth with Disabilities | Human Rights Watch". 6 December 2018. Retrieved 12 December 2023.
  19. Prospects for the implementation of interdisciplinary research: a collection of articles from an international scientific conference (St. Petersburg, June 2023)Перспективы реализации междисциплинарных исследований: сборник статей международной научной конференции (Санкт-Петербург, Июнь 2023). 6 July 2023. doi:10.58351/230615.2023.40.24.001. ISBN   978-5-907676-81-7.
  20. 1 2 Malofeev, Nikolai (1998). "Special education in Russia: Historical aspects". Journal of Learning Disabilities. 31 (2): 181–185. doi:10.1177/002221949803100208. PMID   9529788. S2CID   21574053.
  21. 1 2 3 4 "The Rights of Vulnerable Children Under the Age of Three: Ending their placement in institutional care" (PDF). Europe Regional Office. United Nations: Human Rights-Office of the High Commissioner. Retrieved 20 October 2013.
  22. "Guidelines for the Alternative Care of Children" (PDF). General Assembly. United Nations. Retrieved 20 October 2013.
  23. 1 2 Meese, Ruth (September 2005). "A Few New Children: Postinstitutionalized Children of Intercountry Adoption". The Journal of Special Education. 39 (3): 162. doi:10.1177/00224669050390030301. S2CID   144029692.