A number of infants and young children with disabilities or developmental delays are given over to state care by their parents because of social stigma, pressure from healthcare professionals, incorrect medical diagnoses, or a lack of family support services. As a result, many of the children in Russian baby orphanages have a diagnosed disability. Institutionalization causes and intensifies a host of developmental delays, compounding the challenges. Children with disabilities who live in Russian institutions are segregated from society with no access to education and limited access to medical care. Some are confined to their beds for life. Those that survive to age 18 will be transferred to homes for the elderly where they will waste away the rest of their days.
Because the Russian cultural and systemic approach to disability has encouraged abandonment and institutionalization, there is no infrastructure to support families who decide to raise their children with disabilities at home. For example, children with disabilities are often labeled “uneducable” and do not have the right to a public education. Most families cannot afford to have one of the parents stay home full-time to care for a child with disabilities, and for single-parent families there is essentially no option other than institutionalization. The services that do exist cannot address the complex needs of the children and their families. Medical rehabilitation services for older children in Russia have grown since their introduction in the early 1990s, but services targeting infants and young children with disabilities remain nonexistent in most of Russia.
To better understand Firefly’s impact, please view this hypothetical example of what a family raising a child with a disability would be like with and without Firefly support.