America and the institutional bias

Written by:
Robert Stack
President and CEO
Community Options

Happy Birthday Justin or should I say Artyom now? You remember, the adopted boy who came from a Russian institution only to be returned because the family in Tennessee couldn’t handle him. Well, he just celebrated his 8th birthday in a Russian hospital.

The truth of the matter is that an 8 year-old boy going to an institution, or coming from one is not news. If he were placed in an institution in the Clover Bottom institution in Tennessee, or the Broome institution in New York or any of the seven institutions in New Jersey or the 13 facilities in Texas, no one would have blinked an eye. This is because we still keep over 50,000 people with disabilities locked away in horrific facilities throughout hundreds of institutions in 38 states.

This shameful relic of failed past federal and state public policy is our answer to American parents if they feel they can no longer care for their child with a disability. The practice became acceptable during the last part of the 19th century and throughout the 20th century and is still the last resort today.

Leaders, policy makers and advocates have gradually realized that this is wrong. Many states like Minnesota, most of the New England states and now even Michigan have either ruled this out as an option. (Michigan is closing their last facility this summer). In 1965 there were over 100,000 children and adults with autism, mental retardation, cerebral palsy and even epilepsy living in large, horrific congregate and very costly facilities. Today that number has been cut in half.

Most Americans were horrified at what happened to this 8-year-old boy. Honestly, the only reason it became news was that he had to go back to Russia. I spent a day at an institution in Russia for children and adults with developmental disabilities. It was indubitably the most daunting experience I had in Russia. The children and adults slept in a large building with nothing to do. The conditions were dank; the setting was so far away from the rest of the Russian community. There were accounts of abuse, neglect and unmentionable sights of positive treatment of the people with disabilities that lived there. However, other than a different language, it was literally no different than the exact same kind of treatment that is experienced daily by the thousands of children and adults with disabilities in the United States.

Once in a while there is a news story that erupts about the horrific conditions in a U.S. institution, then it goes away. Recently in Corpus Christi there was a brief story about staff that would provoke people with disabilities to beat each other. The staff would bet on who would win and one of the staff even used her cell phone to tape this fight club. There are the usual deaths without cause, the pregnancies of blind/deaf girls who can’t walk. I was in an institution with an elected official and witnessed a girl bound in rags by her hands and feet. She was also naked.

In most states, the average cost to keep a person in an institution is about $630 per day (around $230,000 per year). These institutions are financed through Medicaid.

Over my lifetime I have seen Presidents decide that something was fundamentally wrong with how children with disabilities are treated in our country. President Kennedy had a sister. He created the “President’s Committee on Mental Retardation” to heighten the awareness of people with disabilities. President Reagan knew that things should be solved on a local level, so in 1981 he signed the Omnibus Reconciliation Act to give more say to states on how to allocate resources to persons with disabilities resulting in 50,000 people being moved to small homes and foster care settings. President Bush signed the Americans with Disabilities Act to increase the abilities of persons with disabilities to live and work more in the community.

There has been significant litigation in Connecticut, New York, Pennsylvania, New Mexico and in Tennessee; there were three lawsuits. The process has been very slow and very costly. The process to close an institution through legal channels is more costly than making the decision to just shut one down. In Tennessee for example, the lawsuits for institutional closure has gone on for over a decade, costing hundreds of millions of dollars.

There are cottage industries of advocates that migrate from state to state based on the efficacy of a lawsuit vies a vie settlement. However, with the serious recession and the loss of revenue to states and the Governor of Tennessee showing marked leadership mandates the Nashville institution be closed before the end of the year. This decision was seemingly arrived at through financial considerations, which is that community living is far less than institutional care.

In many states, the reason that institutions have yet to be closed is lack of leadership and essentially resistance to change.

This resistance is based on job loss and fear of what might happen without an institution to fall back on. Most unions are opposed to institutional closure. They do not want their rank and file to lose their jobs.

The truth is that in states like Minnesota, other branches of state government do in fact hire state workers employed by these institutions. The unions still continue to resist and it seems to take site visits by the United States Department of Justice followed by lawsuits to expedite closure. A few years ago, the state of New Jersey was issued a 27-page letter from the Department of Justice citing hundreds of incidents of abuse and neglect at two of their seven institutions. Horrific accounts of beatings and neglect witnessed by government officials demanding reformation and closure were highlighted. New Jersey settled.

Many of these institutions are utilized for other things, such as prisons or other more relevant and revenue generating venues. For example, the Western Center institution in Pittsburgh was sold to a developer and turned into condos. De-institutionalization has and will continue to be the answer.

It is a fact that persons with disabilities flourish in the community. The majority of people with disabilities now live in small community settings. Many of them have jobs, earn wages and become viable members of their communities. Today, parents are given so many additional options to prevent unnecessary options such as institutions. However, because the economic scales rest in the service provision of institutions, they are told to wait. Today there are over 250,000 families who remain on waiting lists to have their child given community programs. They cannot just send their child to Russia. However, years and years of waiting exacerbate an already bad situation and they wind up looking to an institution as the only viable means of compensating for an already bad situation.

If the President and his Secretary of Health and Human Services created an incentive plan to place people from these horrific institutions; if the federal government pushed states through positive programs to place the remaining people to not have to celebrate their 8th or 48th for that matter birthday in an institution, it would save literally over one billion dollars per year.

People with disabilities would experience their constitutional rights for life and liberty. It is time for us to acknowledge the fact that the way we treated people with disabilities for the last 100 years didn’t work. We now know what does work. It is not sending them to Russia, or a domestic institution. It is giving them the supports they need in small community based homes locally where they can live and benefit from all this country has to offer.


Please watch the below video on institutional closure: