The Convention of the Rights of Persons with Disabilities (CRPD) defines persons with disabilities as: “… those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.” (1)
There are many different types of disabilities; all with a range of different support needs. Physical disabilities often include impaired mobility, vision, hearing, and language challenges. Developmental delays may affect behavior, emotions, and learning. Disabilities – ranging from mild to severe — may be present at birth or as a result of disease, abuse, or injury, particularly in conflict settings. Just as each disability is different, each child living with a disability requires a different, individualized approach.
UNICEF and UNESCO estimate that 150-200 million children (ages 0 to 18) are living with disabilities, worldwide. (3) Yet, services for children with disabilities are often scarce or do not exist in many communities. (4) Depending on the type and severity of disability, children experience discrimination and exclusion from services and opportunities such as peer group activities, education, health, and protection. Fear of being marginalized or shunned severely limits children’s access to essential services including education, health, shelter and care, nutrition, psychosocial support and economic strengthening. (5)
Poverty and gender inequity also influence care and support for children living with disabilities. Families who struggle to meet their children’s basic needs are unlikely to have financial reserves for disability-related needs such as wheelchairs, hearing aids or eye glasses. Girls living with disabilities are less likely to receive food and care or to access education, vocational training, and future employment than boys with disabilities or girls without disabilities. (6)
Children living with disabilities are also vulnerable to neglect, abuse, injury, loss of parental care, exploitation, and even death. Some cultures view children living with disabilities or HIV as unworthy of care, protection or inclusion in the family and larger community. Stigma and social exclusion, lack of community-based programs and resources, and lack of support for families and children living with disabilities often contribute to high rates of institutional care. (9)
Children living with disabilities in the context of HIV
Children living with disabilities and HIV or other chronic illnesses often experience physical and emotional challenges including short stature, reduced stamina, social isolation, and depression. In addition to facing severe social stigma and exclusion (UNICEF, 2005) children living with disabilities are among the most vulnerable to neglect, violence, and sexual abuse, increasing their risk for HIV. (10)
Yet, sexual and reproductive health and HIV prevention programs have largely neglected children and adolescents living with disabilities. (11) Presumptions about their risk behaviors (e.g. lack of sexual activity, limited substance use, minimal risk of abuse, violence or rape) have led to underestimations of their risk for HIV infection. As a result, children and youth living with disabilities lack basic information about sexual and reproductive health and setting boundaries in relationships, therefore increasing their risk for HIV infection and abuse. (12)
HIV prevention, counseling, testing and treatment programs are not typically adapted for children and youth living with disabilities, and providers lack training and experience in working with these individuals. A family or child living with both a disability and HIV may experience compounded stigma and discrimination from service providers, and, as such, may not continue to seek services, care or treatment for one or both of their children’s conditions, foregoing essential health services and improved quality of living. (13)
Opportunities to strengthen support for children living with disabilities and their families
A [child’s] experience of disability is influenced by society’s knowledge and attitudes, and willingness to adapt and accommodate varying needs of all types of abilities. Recently, the focus has shifted from the traditional medical model to a ‘social model’ that promotes the strengths of children living with disabilities, focusing not just on disability but on ability. Emphasizing abilities can influence cultural norms and promote equal rights, equal respect, and equal participation for children in their communities.
Increasing support for children living with disabilities and shifting the emphasis towards ability requires changing attitudes and strengthening social services at every level of the system. Families, communities, civil society and governments all play essential roles in establishing programs and policies that advocate for and meet the complex and individual needs of children affected by HIV who are living with disabilities.
Key activities for supporting HIV-affected children living with disabilities and their families:
Involve children with disabilities in making decisions
- Involve children and adolescents with disabilities in interpersonal communications, sexual and reproductive health, and HIV prevention programs by reaching out to their families, caregivers, educators and representative organizations to raise awareness of their vulnerability to HIV and the need for inclusion. (15)
- Incorporate the views of children living with disabilities in the design, implementation and evaluation of HIV-related and other policies and services so they can easily access and benefit from them.
- Encourage governments to consult children with disabilities when developing and implementing legislation and policies that concern them. Ensure children’s right to be heard, to express choices and desires and to report issues of abuse and exploitation.
Coordinate services to support the child
- Increase synergies among HIV national programs, civil society organizations and communities to reach children and adolescents with disabilities. (16)
- Strengthen coordination of multi-sectoral services such as protection, health, education and shelter (housing) to more adequately meet the multiple and complex needs of children living with HIV and disabilities. (17)
- Train service providers and outreach workers to address disability and HIV-related stigma and discrimination, to understand needs of children and youth with disabilities, and to ensure respect for the rights, dignity, and privacy/confidentiality of children and families of children living with disabilities and/or HIV. (18)
- Support schools’ readiness to accept children with disabilities and to meet children’s special educational needs.
Move beyond minimum standards
- Strive to improve children’s access to appropriate quality care including needs-specific rehabilitation services, medical treatment, technological aids, tools and devices that enhance their strengths and abilities.
- Focus on serving the individual child with a disability and on transforming systems and social norms.
- Strengthen data collection and information systems to capture reliable, objective data on children living with disabilities in the context of HIV. Use this data to improve planning, resource allocation, and advocacy for increased support for children with disabilities.
Support families
- Support families to care for their children living with disabilities at home, within communities and to provide the best possible home environment and quality of life for their children.
- Ensure that social policies account for the monetary and time costs associated with disability and include support for parents and caregivers through subsidized daycare or financial assistance (e.g., cash transfers or grants) to help offset costs and lost income from time spent caring for a child with a disability.
- Include children with disabilities and their families in evaluating services to help guarantee adequate and appropriate provision of disability and HIV-related services as children grow and their needs change.
End Institutionalization of children with disabilities
- Support family-based care for children living with disabilities. Reduce pressure for children to be sent away – establish or strengthen community-based rehabilitative services, schools and health systems, including HIV prevention programs that are accessible and responsive to children and youth with disabilities.
- Ensure that children living with HIV, disabilities and other special needs are not placed in institutions. Where children cannot live at home, provide a range of care options appropriate to the health and developmental needs of individual children as alternatives to institutions.
- Support immediate measures to reduce overreliance on institutions and include a moratorium on new admissions.
Dismantle barriers to inclusion
- Ensure physical accessibility of HIV care and treatment services and resources. Locate services within reach of transportation that is accessible to persons with mobility disabilities.
- Provide prevention, care and treatment information and options for children and youth living with a range of disabilities, in accessible formats including: Braille; large print; plain language; audio; captioned and sign language interpreted video; and/or other formats as appropriate. (21)
- Employ the principles of “Universal Design” when building schools, early childhood development centers, health facilities and parks so they can be physically accessed and used, by all children, regardless of ability.
- Facilitate access and participation of children with disabilities alongside their peers.
- Strengthen Governments capacity to introduce and implement legislative, administrative and educational measures to protect children affected by disabilities and/or HIV from all forms of exploitation, violence and abuse in all settings. Support one, inclusive, high-quality child protection system that is suitable for and accessible to all children.
Fight discrimination
- Work with governments, international organizations, civil society (e.g., disabled people’s organizations) and community partners to ensure that laws and policies include equal rights and non-discrimination for children living with disabilities.
- Establish clear legal entitlements to reduce discrimination against and vulnerability of children with disabilities. Inform disabled children of their rights and teach them how to assert those rights.
- Promote public awareness-raising campaigns to change attitudes towards children with disabilities and their families. Start with essential service providers in health, education and protection. Include international agencies and their government and community partners to highlight children’s abilities and foster community engagement with and by children with disabilities.
- Hire people living with disabilities and/or HIV as peer educators, counselors, and health and outreach workers. (22)