In many countries, people with disabilities may be forced to live in an institution even if they might prefer to live in their own home. Being unable to choose where you live and who you live with is itself a human rights violation. People placed in institutions often experience additional human rights violations such as losing the right to make choices about what medical treatment they will accept or reject, being unable to participate in community and cultural activities, experiencing higher risk of abuse, and other issues.
In some places, programs have been successful in moving people with disabilities from institutions to their own homes in the community. Sometimes institutions have been shut down because all the former residents now live freely outside them.
Supporting Independent Living
There are ways to provide assistance and services to people in their own homes, enabling them to live outside institutions. Examples include personal care services that might be needed for daily tasks (i.e. bathing, eating, etc.), or assistance in understanding and paying for bills and managing one’s personal budget, shopping, and laundry.
In some cases, these types of services are only made available to people inside an institution. This limitation can effectively trap people in institutions even if laws might technically defend their right to live at home. The process of de-institutionalizing people with disabilities often needs to include creating programs that make it possible for them to receive all the services they need from day to day either inside their own home or at a local community-level clinic or other service agency that they can visit on a periodic basis.
Making Communities Inclusive
People with disabilities are sometimes placed in institutions because local neighborhoods and communities may not be disability inclusive. Removing accessibility barriers in local communities can be one part of a larger plan for moving people with disabilities from institutions to their own homes.
It may be helpful to review laws to ensure they support the right of individuals to choose to live at home. For example, programs need to be in place that provide people with certain kinds of services at home or in their local communities centers that previously were only available inside institutions. In some cases, legislation may need to mandate that assistance programs be created and maintained.
In many countries, laws may make it too easy to permanently take away a person’s right to decide where they live simply because they have intellectual, psychosocial, or other disabilities. These laws often violate the principle of Article 12 in the Convention on the Rights of Persons with Disabilities (CRPD). These laws may need to be revised or abolished so people with disabilities can have the freedom to refuse to be placed in an institution, and to request and receive the services they need to live at home.
In some countries, it may also be necessary to develop legislation defending the rights of people with disabilities to pursue legal complaints in court. This enables people with disabilities who feel their right to live in the community has not been respected to pursue this right in court or otherwise pursue justice. Legislation may need to defend the right of people with disabilities to enter into contracts to receive disability-related services, or to purchase or rent housing, or otherwise enter agreements that affect their ability to live outside an institution.
Simply finding a house or apartment that is accessible can be enormously difficult in many countries. Thus, it may be helpful to have legislation aimed at increasing the number of private homes that are fully accessible for people with various disabilities without the need for added renovations: this could begin with newly constructed homes, but could consider incentives for landlords to renovate selected existing buildings.
De-institutionalizing Infants and Children
There are many reasons why infants and children may be placed in institutions. Disability is one common reason. Some countries have implemented programs to de-institutionalize infants and children so they can remain with their original family or else be placed in foster care or adoptive homes. Many of these programs, however, are much slower to de-institutionalize marginalized children in general—including children with disabilities. Often children with disabilities are among the last to be moved out of institutions—if they are de-institutionalized at all.
Leading organizations, such as the Children’s Rights International Network, recommend specifically prioritizing children with disabilities and other marginalized children in de-institutionalization efforts so they are not left behind. They also recommend that programs meant to de-institutionalize children in general may need certain adaptations to meet the needs of children with disabilities. For example, training programs for foster families should provide training in meeting the needs of children with disabilities. Some families may need access to periodic respite care in order to enable them to continue caring for children with more intensive care needs at home.
Some children with disabilities are placed in institutions because there may be no other place for them to receive an education. De-institutionalizing children with disabilities may need to include efforts to make local public schools throughout the country more accessible and more competent in meeting their educational needs.