By Aicha Bensaid, BLOOM Charity
In many countries, children with disabilities are often deprived of their liberty, separated from family environments, and confined to institutions or locked away in so-called health-care facilities in the name of care and treatment. The reasons for this isolation vary: stigma, lack of awareness and a scarcity of support services for children and their families all play a role. Inside institutions in several countries, Human Rights Watch has documented that children with disabilities often face serious neglect and abuse, including beatings and psychological violence, sexual violence, involuntary and inappropriate medical treatment, use of abusive physical restraints, seclusion and sedation, denial of education and denial of regular contacts with families. These abuses can severely impede their physical, intellectual, emotional, and social development, and these harmful impacts are not limited to contexts in which the worst abuses take place. Global research has shown that children develop best with strong and supportive relationships in a safe and nurturing family-like environment.
Estimates of the number of children living in institutions worldwide range from two million to eight million.[1] These figures are often reported as underestimates, due to a lack of data from many countries and the large percentage of unregistered institutions. A disproportionate number of children who are placed in institutions have disabilities. Many are held in abusive conditions, separated from their families and their communities, deprived of education, and neglected. The exact number of children with disabilities in institutions worldwide is unknown.
Data is the key to identifying challenges and solutions that can improve the lives of persons with disabilities. Unfortunately, it’s often the case that the areas where we most need data are exactly those where we find significant data gaps—it’s true for gender, for those affected by conflict, for migrants, and it’s true for information about disability as well.
UNDERSTANDING DISABILITY:
This technical brief uses the broad definition of disability, noting that this may encompass a wide range of disorders, conditions, or situations. This PEPFAR definition evolved from the 2006 UN Convention on the Rights of Persons with Disabilities (CRPD), which provided an open, social-oriented definition “recognizing that discrimination and therewith the disabling of access for persons with disabilities is largely due to barriers of various kinds, including the built environment, but even more so to social and expressive of personal attitudes such as stereotypes, prejudices and other forms of paternalistic and patronizing treatment.” (Schulze 2010). Achieving an international, globally accepted definition of disability is challenging because models of disability are strongly influenced by culture and local contexts, and what is considered a disability in one society may not be seen that way in another. What is considered a disability—and how people with a particular disability are viewed and treated—is highly dependent on the country context, national, and local definitions, what is valued and devalued in a society, and the overall social interpretation of a particular disability (Groce 1999).
A worldwide human rights issue:
Up to eight million children live in orphanages across the world, despite more than 90% having at least one living parent. Disabled children are overwhelmingly represented, and can remain in institutionalized care for life. Disability rights advocates are saying that institutionalizing children with disabilities, cuts millions of children off from society, disrupts brain development, and violates children’s rights. “Neglect is awful for the brain,” Harvard pediatrics professor Charles Nelson told NPR, adding that a baby’s sensory and emotional development is disrupted , perhaps permanently, when “you’re staring at a white ceiling, or no one is talking to you, or no one is soothing you when you get upset as an infant”.
For the last 13 years, DRI (Disability Rights International) has been working on a worldwide campaign to shut down orphanages and institutions that, in far too many cases, neglect or even abuse the rights of the children. In particular, they focus on people with disabilities. Over their years of research, DRI has documented abuse within state-run and donor-funded facilities – including orphanages and psychiatric wards – from the Ukraine to Guatemala. In the process they have exposed institutionalization as a worldwide human rights issue. Although 32 state-run institutions in Georgia were shut and replaced with family and community-based services in the last decade, a 2013 DRI investigation found that US government money had funded two institutions specifically for disabled people, in the years since. Between 2008 and 2012, €5.6m (£4.8m) of EU funding was spent on renovating children’s institutions and those for people with disabilities in just one county in the Czech Republic. Despite this investment, the quality of care did not improve and the Czech Government commissioner still reported concerns over serious neglect and abuse in these facilities:
‘When no one is watching out, bad things happen to children’.
The Path to Institutionalization and the Reasons behind it:
Children with disabilities are placed in institutions for a variety of reasons. Often, parents are encouraged and advised to do so by professionals who claim that institutions will provide the most effective care. In other cases, there is a lack of accessible community services to support children with disabilities and their families and to allow families to care for these children at home. Parents may also lack the health, social, and economic support to be able to provide the needed care and assistance to their child. For example, one of the key reasons for placing children with developmental disabilities in institutions in India, Russia and Serbia is the lack of community-based health-care.
Another reason is that parents often decide to place their child in an institution as a means for them to get an education as there are no inclusive schools or day-care facilities in their communities. Ana, a single mother of a 12-year-old girl with physical and intellectual disabilities who lives five days a week in an institution and spends weekends at home, told Human Rights Watch: “Not one single day-care center wanted to accept her. They explained they found her too hyperactive. I’ve spent a year and half begging for an alternative where my daughter could spend her time while I was at work and I did not succeed. Three years ago, with no other option available, I placed her in an institution. Now, she can also access education with other children in the institution.” [20]
Some institutions might have adequate resources and dedicated staff, but they cannot replace a family. Institutions cannot provide the attention and affection a child would receive from their own parents and families, or from foster parents in the community [10]. As one social worker who works in one Serbian institution said that children born with serious health problems or disabilities in Serbia are often denied the opportunity to bond with their parents upon birth: “In the maternity wards, the practice is that parents do not make physical contact with infants with disabilities.”[16 ] The social worker said that such a practice significantly hinders the establishment of an emotional connection and affectionate relationship between parents and an infant with disabilities. The social worker also confirmed that professional staff in some hospitals instead may be quick to encourage parents to give up on their child with a disability.
The vast majority of children with disabilities in institutions has a living parent and could live with their families given the right support services [12]. However, due to a lack of community-based health-care, support services, and adequate information, as well as poverty, stigma, discrimination, social exclusion, and neglect by authorities and social services , parents in many countries are often pressured or feel they have no choice but to place their child with a disability in an institution. [13]
The Mistreatment of Girls with Disabilities:
Around the world, women and girls with disabilities are subjected to horrific and widespread human rights violations. In particular, those who are detained in institutions and segregated from society suffer terrible abuse. DRI has found through its investigations that abuse against women and girls with disabilities – such as trafficking, forced sterilization, sexual violence, and physical abuse – is raging, especially when women and girls are locked away and forgotten in institutions and orphanages.
Historically, women with disabilities have been prevented from exercising their sexuality and forming family units through marriage. The inherited theories of the late 19th and early 20th centuries, which sought to prevent persons perceived as “inferior” or “unfit” from reproducing, shaped laws and policies that still have implications for persons with disabilities today.
UNICEF has estimated that 82,000 children live in Ukraine’s institutions, while other NGOs and local advocacy groups quote numbers upwards of 200,000. There is little to no oversight or protection for children placed in institutions and orphanages. Without government supervision, children detained in institutions are at risk of sexual abuse and trafficking for sex, pornography, or sale of organs. Children, especially girls, caught in the crossfire of the current armed conflict in Eastern Ukraine are especially at risk of disappearing from institutions or being abandoned in them. The UN recognizes a link between conflict and trafficking and sexual slavery; trafficking thrives in environments created by the breakdown of law and order. [2]
Those most vulnerable to being trafficked often belong to already marginalized and disadvantaged communities, such as children in orphanages and institutions. In its 2014 Trafficking in Persons report, the United States Department of State identified Ukraine as a source, transit, and destination country for trafficking for sex and forced labor. [3]
The International Organization for Migration reports that more than 120,000 Ukrainians have been the victim of trafficking since 1991, making Ukraine one of the largest source countries for trafficked persons in Europe. [4]
What Can and Should be done Instead?
All children, including children with disabilities, have the right to be cared for and raised by their parents and not to be separated from their parents, except when such separation is necessary for their best interests. For example, not all families are safe, nurturing, and protective, and there are times when alternative family care or short-term state care for children may be necessary.
According to BLOOM’s website, “more than 65,000 children live in Moroccan orphanages.” A 2015 UNICEF study reports that a common reason for child abandonment in Morocco is birth outside of marriage. In Morocco, there is a stigma against unmarried or single mothers.
Research suggests that nearly 16% of Moroccan children born out of wedlock are abandoned. Other parents may give up disabled children or children they cannot care for due to poverty or immigration status. Neglect, poverty and abandonment have left tens of thousands of children in Moroccan orphanages. Understaffing and a lack of funding lead to overcrowding and insufficient resources. Yet, increased awareness of this issue is leading more people to support orphanages and fostering greater openness toward adoption in Morocco. [21]
BLOOM seeks to improve quality of life and long-term outcomes for children living in Moroccan orphanages through campaigns targeting early childhood development/education and mental health needs. BLOOM also aims to build networks of support for Moroccan children adopted in the USA, to foster their sense of community and a connection to their birth country.
Conclusion:
Children should not be isolated from their families or communities or denied the chance to learn and be with other children because they have a disability. Children with disabilities need to be included in communities and schools and not confined – in the name of “care,” “treatment,” or “rehabilitation” – to institutions where in reality they are at risk of irreversibly stunted physical, intellectual, emotional, and social development. This will require a change in how governments invest their resources, which should be used to promote community-based services and support, instead of large-scale institutions. It will also require a change in attitudes to view children with disabilities as any other child, possessing the same rights and requiring the same amount of affection, inclusion and support.
* In some Islamic countries, the term ‘Kafala’ in Islamic law is used to describe a situation similar to adoption, but without the severing of family ties, the transference of inheritance rights, or the change of the child’s family name. Kafala also mandates that parents who take in a child be Muslim and promise to raise the child according to their birth culture and religion.
Citations and Resources:
[1]: UNICEF, “Progress for Children: A Report Card on Child Protection Number 8,” 2009; Pinheiro, P., World Report on Violence against Children (New York, UNICEF, 2006).
[2]: Elisabeth Rehn and Ellen Johnson Sirleaf, Women, War, and Peace: The Independent Expert’s Assessment on the Impact of Armed Conflict on Women and Women’s Role in Peace building, 2012.
[3]: United States Department of State, 2014 Trafficking in Persons Report – Ukraine,
Page 390, 2014.
[4]: International Organization for Migration, Ukraine. No Way Home: The Exploitation and Abuse of Children in Ukraine’s Orphanages (2015).
[12]: Browne KD, Hamilton-Giacritsis CE, Johnson R, Chou S. Young children in institutional care in Europe. Early Childhood Maters 2005; 105; 15-18.
[13]: Human Rights Watch, Human Rights Watch, Abandoned by the State: Violence, Neglect, and Isolation for Children with Disabilities in Russian Orphanages, September 15, 2014.
[16]: Human Rights Watch, It Is My Dream To Leave This Place: Children with Disabilities in Serbian Institutions; June 8, 2016.
[20]: Human Rights Watch, ‘It Is My Dream To Leave This Place’: Children with Disabilities in Serbian Institution, PP. 38-39.
[21]: “BLOOM Charity Brings Hope to Moroccan Orphanages”. By Annie Prafcke; The BORGEN PROJECT, October 30, 2021.