According to a recent investigation by The New York Times, 1,200 developmentally disabled adults died of unnatural or unknown causes while living in state and privately run homes in New York over the past 10 years. James Taylor, a 41-year-old quadriplegic, was one of these deaths. Although he had no more ability to lift his head than a newborn, Mr. Taylor was left unattended in a tub with running water for 20 minutes where he drowned. No one told his family that a similar drowning had occurred only four months previously in the state. His sister, Patricia Taylor, is quoted as saying, “I believe that God put these people here for a purpose, because if we didn’t have them to look after, we would lose our humanity. How would we know compassion? It says in the Bible, do ye so unto the least of my brothers. I think that’s what it’s all about.”
So how is New York looking after the “least of my brothers”? Not particularly well, according to the Times. In fact, different agencies in New York cannot even agree on exactly how many disabled residents died in state care in 2009. The 1,200 deaths of unnatural or unknown causes over the 10-year period in New York represent one in six deaths of residents in privately or state-run homes. In comparison, the number of deaths attributable to unnatural causes in neighboring Connecticut and Massachusetts is 1 in 25. In New York, residents who were unable to ambulate stairs safely were left alone where they tumbled to their deaths; other adults who had swallowing difficulties choked to death while eating unattended. Whereas a few other states make an effort to investigate these deaths and initiate system-wide alerts and trainings when troubling trends in deaths are recognized, New York does not. Connecticut, after noting four choking deaths in 2006, instituted a statewide program consisting of two days of training on choking and refresher courses every two years thereafter. Since 2007, there has been only one choking death of a disabled resident. In comparison, New York has had 21 choking deaths in the same time frame.
In 2009 four adults died in a fire in a group home in Wells, New York where the evacuation plans assumed the disabled residents would be able to flee a fire. The resulting fire investigation by a local grand jury and the State Office of Fire Prevention and Control revealed significant safety issues that resulted in this tragic fire. And many of these troubling issues had been identified previously by a whistle blower in 2008 who warned a senior state official that records for fire drills in groups homes, including the one in Wells, were “routinely faked or implausibly speedy evacuation times were being claimed.” However, the Office for People with Developmental Disabilities, which is tasked with overseeing and running thousands of group homes in the state, has yet to review whether the state’s group homes have the appropriate safety modifications found lacking by the investigators of the Wells fire.
According to the Times article, there doesn’t appear to be a lot of hand wringing over the care of disabled adults. Nor does the article state what concrete action steps, if any, the state is undertaking to reduce these unwarranted deaths, although the commissioner for the Office for People with Developmental Disabilities acknowledged a ‘lack of transparency” and her desire to acquire “better data” on these deaths.
Although not discussed in The New York Times article, the disabled are at a far greater risk of abuse and neglect than is the general population. However, persons with severe disabilities, such as those discussed in the Times article, face unique forms of abuse. According to an Oregon Health & Science University study, the disabled experience seven major categories of abuse: physical abuse, sexual abuse, verbal or emotional abuse, neglect or withholding of support, financial abuse, manipulation of medications, and destruction or disabling of equipment.
The disabled, such as those in group homes, simply can’t pick up the phone and walk out the door when confronting abusive situations. And their families, who are unable to care for the severely disabled in their homes and in desperate need of these group homes, also have unique issues and concerns. Although the Oregon study provides multiple strategies for preventing and stopping violence and abuse, most are directed for the disabled who are still in their homes and at risk of abuse not only from service providers but also from family members. However, some of the strategies directed at improving the level of care are relevant to helping residents in group home settings.
Personal assistance services providers who work in these homes are often underpaid and themselves have histories of “poverty, personal victimization or victimization of others, and life instability that provide fertile ground” for abuse. We need to offer PAS providers competitive wages and benefits to increase the likelihood of a high level of care. We need to ensure that the disabled are cared for by multiple providers to provide better oversight of their care. We need to ensure that these facilities are better trained in recognizing abuse and violence. These recommendations, however, are bottom up ones; what is ultimately needed is better statewide systems to monitor what is happening in group homes and a true willingness to investigate and implement changes where problems are identified. After all, we need to protect the “least of our brothers.” It’s all of our jobs.
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