Institutionalization of children with disabilities in Russia

Institutionalization of children with disabilities 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:

• A facility that is separated from the local community and does not allow for normal community interaction^[3](p119)
• A facility that houses a large group of non-family members who are made to follow a pre-planned schedule that may not meet their individual needs^[3](p119)
• A facility that provides housing for individuals who are segregated due to a disability and have to live in isolation for prolonged periods of time^[3](p119) According to the Convention on the Rights of the Child, Article 23: "States Parties recognize that a mentally or physically disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child's active participation in the community."^[4] The Committee on the Rights of the Child finds that institutions have become a widespread option for the placement of children with disabilities. The 2006 General Comment No.9 reports concern with the lack of adequate treatment provided, as well as increased vulnerability to institutional abuse and neglect.^[5] In Russia, 400,000 to 600,000 children are under institutional care, and these children are subject to the concerns stated in the Committee's report.^[6]

Effects of institutionalization on children

The 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.^[7] 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 are subject to inadequate education. The report attributes such conditions to lack of necessary resources and overworked staff, who are unable to provide the necessary care to all children.^[8] Research related to institutional care has been conducted in various European countries, and findings show that these types of environments lead to a plethora of negative consequences. The following are common effects:

• Developmental delay is prevalent due to the absence of physical stimulation and presence of daily neglect, as is motor skill delay, inadequate brain development, impairment in social and cognitive skills, and speech impediments. Attachment disorders are also common, which lead to harmful self-inflicting actions. Enuresis, anxiety disorders, eating disorders, as well as difficulty in forming healthy relationships have also been reported.^[3](p121)[9]
• Delay in physical development occurs for a variety of reasons. Malnutrition, lack of immunization, improper feeding, and depression resulting from lack of emotional attention all contribute to physical growth delays among children. Widespread infectious disease and problems with vision, hearing, low height and weight, along with microcephaly have been reported. While children may have correctable birth defects, often surgery or necessary treatment is not provided.^[9][10]
• Institutional abuse is also widespread, leading to further physical and emotional damage. Sexual abuse also occurs, but the actual number of cases is unknown.^[3](p121)[9]

Causes of institutionalization

Soviet ideology

In 1917, the Russian Revolution resulted in Soviet ideology that centered around the idea of creating a society free of anomalies. 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." ^[11] 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. 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]

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.^[12] 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.^[13]

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]

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.^[12] Eight schools exist that serve individuals with the following disabilities: severe retardation, various ranges of blindness and deafness, as well as severe motor problems.^[14] 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."^[12] 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.^[14]

Initiatives

International proposed plans

Several international bodies have created principles that uphold the rights of children with disabilities.^[3]-A Human Rights Priority for Children with Disabilities"/>^(p121) 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.

• equality and non-discrimination (art. 5);
• right to life (art. 10);
• equal recognition before the law (art.12);
• right to liberty and security (art. 14);
• freedom from torture or cruel, inhuman or degrading treatment or punishment (art. 15);
• freedom from exploitation, violence and abuse (art.16);
• respect for physical and mental integrity (art. 17);
• right to live independently and be included in the community (art. 19);
• respect for privacy (art. 22); and
• respect for home and the family (art. 23).^[15]

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." ^[16] 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:

• Resources for families, such as community support, education, healthcare, and appropriate levels of preventative, supportive, or rehabilitative service according to need.^[15]
• Economic aid to help with additional costs associated with providing adequate care for children with disabilities. This aid can be in the form of grants, social pensions, or any other form of financial assistance.^[15]
• Appropriate care options if families are unwilling to keep the child. Such facilities must provide support, education, and integrated services. In circumstances where parents are willing but unable to take care of the child, there should be the opportunity for children to have as much interaction with their parents as possible.^[15]

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."^[12] 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.^[12] 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.^[12]

Local Efforts

Advances regarding the improvement of resources and services for children with disabilities has occurred in isolated instances. In the region of Sverdlovsk Oblast, various specialized centers and a team of staff contribute to the evaluation of a child, which has proven to provide a more accurate assessment. In the region of Saratov, a center for children with disabilities, which includes services and support networks was established in 1994. This center, however, consists of untrained staff, as social work is considered to be a profession that does not require formal education. Despite this shortcoming, women have reported the center to be beneficial for their children.

United States Adoption

According to "A Few New Children: Postinstitutionalized Children of Intercountry Adoption," more than half of the children adopted in the United States are from China and Russia. Of the children adopted from Eastern Europe, it was found that when initially adopted, "These children 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." ^[17] In post-adoption analysis, this study found that 60.38% of parents who adopted reported "no continuing medical or developmental difficulties for their children." While this study reported such findings when collecting data from 105 children, it was stated that much more information must be gathered to assess the changes adoption makes in the development and growth of children who had been previously institutionalized.^[17]

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. 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. 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. Retrieved 20 October 2013.
7. Koloskov, Sergey. "The Desperate Situation of Children with Disabilities in Russian Institutions". Disability World. Disability World. Retrieved 20 October 2013.
8. "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. Retrieved 30 November 2013.
9. "A Study of Institutional Childcare in Central and Eastern Europe and the Former Soviet Union" (PDF). Family Matters. Every Child. Retrieved 20 October 2013.
10. Miller, Laurie (April 2000). "Initial assessment of growth, development, and the effects of institutionalization in internationally adopted children". pediatric annals: 224–232.
11. 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. doi:10.1177/002221949803100209. Retrieved 20 October 2013.
12. "Children's Rights: Russian Federation". Library of Congress. Library of Congress. Retrieved 20 October 2013.
13. Iarskaia-Smirnova, Elena (1999). ""What the Future Will Bring I Do Not Know": Mothering Children with Disabilities in Russia and the Politics of Exclusion". A Journal of Women Studies 20 (2). JSTOR 3347014.
14. Malofeev, Nikolai (1998). "Special education in Russia: Historical aspects". Journal of Learning Disabilities 31 (2): 181. doi:10.1177/002221949803100208. Retrieved 20 October 2013.
15. "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.
16. "Guidelines for the Alternative Care of Children" (PDF). General Assembly. United Nations. Retrieved 20 October 2013.
17. 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. Retrieved 5 November 2013.