UNICEF’s “State of the World’s Children Analyses – Human Rights and the Segregation of Children with Disabilities – Institutionalization and deinstitutionalization” July 10th, 2012

In congruence with the 2013 edition of UNICEF’s “State of the World’s Children Analyses”, dedicated to children with disabilities, UNICEF held its first discussion on July 10th 2012, “Human Rights and the Segregation of Children with Disabilities – Institutions and deinstitutionalization”. The discussion touched upon components of the report at the UNICEF House at UN Plaza in New York City. In order to exemplify the ways in which children with disabilities are treated on a world-wide scale, Founder and Executive Director of Disability Rights International, Eric Rosenthal and Founder and Executive Director of Center for Outcome Analysis Inc., James Conroy were invited to discuss the types and degree of human rights violations within institutions, mechanisms that countries can utilize to end institutionalization while protecting the rights of children, and the challenges involved in transitioning to community-based care.

The first presenter, Eric Rosenthal, has had twenty years of experience in the field, and founded Disability Rights International in 1993. His primary focus over the past two decades is the documentation of living conditions of children in institutions of 26 countries. Rosenthal began his presentation by explaining that the issue of children living in institutions is a subject that is terribly overlooked internationally, but has been transformed significantly through the UN Convention on the Rights of People with Disabilities by instilling a new international human rights framework. Rosenthal notes that this is the only international law that recognizes the rights of people with disabilities. It outlines the failure of our society to protect these basic human rights, and shift towards the right of being integrated in the community.

As it relates to certain articles within the UN convention, Rosenthal speaks of the difficulties that occur when trying to integrate a child into the community after being institutionalized for it is hard to repair bonds that have been broken. Because children need secure attachments to their parents or guardians, psychological damage results when children are confined to institutions at any age. According to Rosenthal, countries claim that it takes a long time to reform this pattern of care and that there is a lack of resources to take children out of the institutions and integrate them into the community. However, Rosenthal affirms that it costs less for people with disabilities to live in the community, even in under developed societies. One of the biggest issues that Rosenthal mentioned is that many countries do not monitor how many children are kept in institutions; therefore, many go missing or are unaccounted for. Article 16 in the UN Convention requires that monitoring exists due to countries failure to report these numbers.

In order for the audience to conceptualize the horrors that take place in institutions worldwide, Rosenthal showed a video that was filmed 7 years ago in which he visited institutions in Brailia, Romania that display the inhumane conditions most people are unaware of. Children were restrained, diseased, starved and many didn’t have adaptive behavior skills, as they had not experienced love, attention or support from another human being. Furthermore, most of these institutions barely had enough staff to care for each child properly, which exacerbates the issue even further.

James Conroy’s presentation focused on the findings of his research regarding institutionalization that he has compiled over the past forty years. Through his studies, Conroy’s opinion of institutions has changed dramatically since he first began examining its effects on people with disabilities. When Conroy came onto the scene, the United States had an all time high of institutions for people with developmental disabilities. He noted that Pennhurst State School and Hospital, located in Spring City, Pennsylvania, had the worst conditions he had ever seen in an institution. For example, the institution had been designed for 700 people, but housed 2800. Many of the residents had broken bones, missing teeth, and were confined to cribs. After his visit to Pennhurst, Conroy thought the solution was to improve the quality of life at an institution so skill development would increase. Conroy focused his efforts on determining what resources were needed to create a model institution, but was stopped when a U.S. Federal Court ordered Pennhurst to be closed in 1987 as it was declared, “unconstitutional by its very nature”. Deinstitutionalization of all the residents immediately followed after the ruling.

Conroy was skeptical of this concept as deinstitutionalization was not successful for people with mental illnesses. The Pennhurst Longitudinal Study was the largest study ever done on deinstitutionalization; 1,154 people were observed from 1979 to 2007. The point of the study was to verify whether or not people with disabilities were better off in the community as opposed to an institution. After 14 years, Conroy discovered amazing results as participants of the study reported increased independent functioning, increased self-control, an increase in the 14 qualities of life as well as overall happiness, increased survival rate and sense of inclusion/integration within the community and more. This longitudinal study was duplicated in Connecticut, Oklahoma, New Hampshire, North Carolina, Kansas, Illinois, and California, producing the same positive benefits. Interestingly enough, Oklahoma produced the strongest outcomes while having the worst economy due to the collapse of the oil industry. Oklahoma’s approach to deinstitutionalization was ideal as they quickly transitioned to “supported living” where people had a choice of home and how many people they would like to live with (ranging from 1 to 3). The implementation of deinstitutionalization was deemed fiscally responsible as Oklahoma bypassed creating expensive group homes.

These results are excellent indicators as to why community integration improves the overall quality of life for people with disabilities. To take this a step further, the concept of economy of scale explains why living in the community is less expensive than living in an institution. Treating any service like an assembly line actually costs more than most people would think because placing people with disabilities in institutions is the most costly human service with a national average of $200,000 per person. Applying the economy of scale idea as a means to produce a quality human service product indicates that as the size of a residence increases, the quality of life decreases. This occurs because people believe that increasing the size of any given residence will be balanced with more staff. That approach will backfire as larger residences become more expensive and hinder the staff’s ability to give individualized attention. Moreover, Conroy’s studies have concluded that younger individuals with severe disabilities require more individualized attention that is best achieved through a smaller home as it promotes efficient skill development. The United States issue in regards to the care of people with disabilities is largely due to their financing methods of investing resources in facility care where the control lies in the hands of the provider.

Both Rosenthal and Conroy’s presentations show that utilizing community integration models for people with disabilities is the most cost efficient, and beneficial way to adhere to a person’s emotional, mental and physical needs as it relates to their disability. The fact that countries around the world violate the human rights of children and adults with disabilities due to poor methods of implementing resources is shameful when there is so much that can be done to avoid it. Rosenthal and Conroy’s work reaffirm that it is time to end the institutionalization of people with disabilities all together and honor the innate liberty of self-determination and happiness that every human so deserves.

Check out the NAMPWD team at UNICEF!

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