One out of ten people in Guatemala have a disability.[1] Guatemala decided to take action after receiving a report from a study performed in 2005 revealing that “only 10 per cent of children with disabilities concluded primary school, 77 per cent did not have access to rehabilitation services and 53 per cent could not read or write.”[2] Upon receipt of this report, Guatemala ratified the Convention on the Rights of Persons with Disabilities (CRPD) and agreed to adopt a human rights-based approach to disability and enact laws to ensure compliance.[3] After Guatemala became a signatory, the United Nations Partnership on the Rights of Persons with Disabilities (UNPRPD) was created to “support countries to accelerate the implementation of the CRPD and disability-inclusive Sustainable Development Goals (SDGs).[4] They “bring[] together different UN entities, governments, persons with disabilities, and civil society for joint programming and partnerships.”[5] The UNPRPD worked with and within Guatemala for many years before releasing a Situational Analysis of the Rights of Persons with Disabilities in Guatemala.[6] In this report, they found there is common practice of institutionalizing children with disabilities in centers (also called orphanages) that are managed by the Social Welfare Secretariat.[7] In fact, there are laws promoting the institutionalization of persons with disabilities.[8]
The cost of raising a child with a disability in the United States could range from 5% to 12% of a family’s income or a net total of up to $8,000 per year.[9] In Guatemala, a country which faces poverty and inequality rates that are among the highest in Latin America, the costs of caring for a child with disabilities is similar or higher.[10] As a result of the lack of resources, families are forced to put their children in orphanages.[11] The Guatemalan government has minimal social protection programs aimed to help families who have a child with disabilities.[12] However, the funding for these programs is limited and so is the timeframe that a family can receive assistance.[13] Rather than putting more money in these programs, the Guatemalan government chooses to “spend[] 45 times more to keep a child with disabilities in an institution than to support families who keep them home.”[14] Thus, these children, who have high support requirements,[15] are not likely to ever leave these institutions.[16]
While in these institutions, the children are often vulnerable to violence and abuses such as those which occurred in one of the orphanages, Hogar Seguro Virgen de la Asunción.[17] On March 7, 2017, in Hogar Seguro Virgen de la Asunción, there were over 600 boys and girls some of whom protested against “the physical, and sexual abuse, rape and trafficking they suffered” while there.[18] That night, the girls who participated in the protest were punished and locked in a tiny auditorium overnight where a fire broke out and killed forty-one girls.[19] After the discovery of the abuses in this location, instead of closing down locations with similar issues, the Guatemalan government doubled down and opened more group homes for children with disabilities.[20]
The Committee on the Rights of Persons with Disabilities issued their concluding observations on the initial report of Guatemala on September 16, 2016, just seven months before the tragedy at Hogar Seguro Virgen de la Asunción. They recommended that Guatemala “[e]stablish the legal basis and financial support necessary to ensure that all children with disabilities are able to live in a family setting and to exercise their right to inclusive local services for children.”[21] They also called for “a strategy for the deinstitutionalization of persons with disabilities, with time frames, adequate resources and specific assessment measures.”[22] This call for deinstitutionalization means reducing the dependence on institutions and shifting to a system that provides community based services and support for the family.[23] Unfortunately, there is still “no national strategy for deinstitutionalizing children with disabilities from publicly supported residences and facilities.”[24] Until the national system supports the families and de-institutionalize the laws and practices, there will continue to be human rights violations of the children with disabilities in Guatemala.
[1] Peride Blind, Count Me In: Working Together for Disability Inclusion in Guatemala, United Nations Sustainable Development Group (Dec. 3, 2021), https://unsdg.un.org/latest/blog/count-me-working-together-disability-inclusion-guatemala.
[2] See Committee on the Rights of Persons with Disabilities Considers Initial Report of Guatemala, Committee on the Rights of Persons with Disabilities (Aug. 23, 2016), https://www.ohchr.org/en/press-releases/2016/08/committee-rights-persons-disabilities-considers-initial-report-guatemala.
[3] See id.
[4] About Us, UNPRPD Fund, https://www.unprpd.org/aboutus (last visited Nov. 2, 2023).
[5] Id.
[6] U.N. P’ship on the Rhts. of Pers. with Disabilities, Situational Analysis of the Rights of Persons with Disabilities Guatemala: Country Report 2021 4 (2021) [hereinafter Country Report 2021].
[7] Id. at 23.
[8] Id. at 20.
[9] See Donna Anderson et al., The Personal Cost of Caring for a Child with a Disability: A Review of the Literature (Jan.-Feb. 2007).
[10] The World Bank In Guatemala: Overview, The World Bank https://www.worldbank.org/en/country/guatemala/overview (last visited Nov. 2, 2023).
[11] See Priscila Rodriguez Et Al., Still in harm’s way: International voluntourism, segregation and abuse of children in Guatemala 11 (July 16, 2018).
[12] See Country Report 2021, supra note 6, at 24. – pg 13
[13] See id.
[14] See id. at 31.
[15] Bureau of Democracy, Hum. Rts., and Lab., 2022 Country Reports on Human Rights Practices: Guatemala, United States Department of State (2022), https://gt.usembassy.gov/guatemala-2022-human-rights-report/.
[16] Priscila Rodriguez Et Al., supra note 11, at iv.
[17] See New Report: Still at Risk – Death and Disappearance of Survivors of the Fire at Hogar Seguro Virgen de la Asunción, Disability Rights International (Oct. 13, 2021) https://www.driadvocacy.org/news/new-report-still-risk-death-and-disappearance-survivors-fire-hogar-seguro-virgen-de-la.
[18] Id.
[19] Id.
[20] See Priscila Rodriguez Et Al., supra note 11, at 6-7.
[21] U.N. Convention on the Rts. of Pers. with Disabilities, Concluding observations on the initial report of Guatemala, CRPD/C/GTM/CO/1, ¶ 24 (Sept. 30, 2016).
[22] Id. at ¶ 54.
[23] See Mesa Técnica de Seguimiento a NNA con Discapacidad en Condición de Abrigo, Programa de Atención Integral a Personas con Discapacidad en el Sistema de Protección Especial [Comprehensive Care Program for People with Disabilities in the Special Protection System], 13 (Guat), https://www.ohchr.org/sites/default/files/documents/hrbodies/crpd/cfi-deinstitutionalization/submissions/2022-07-25/Guatemala-Programa-de-Atencion-Integral-a-Personas-con-Discapacidad-25-07-2022.pdf.
[24] Guatemala 2022 Human Rights Report, U.S. Embassy Guatemala (Mar. 21, 2023), https://gt.usembassy.gov/guatemala-2022-human-rights-report/.
