The NY Times had an informative article on the state of care in New York’s adult homes. The Times undertook its own analysis of death records and found disturbing patterns: some residents who were not supposed to be left alone with food choked in bathrooms and kitchens. Others who needed help on stairs tumbled alone to their deaths. Still others ran away again and again until they were found dead.
In New York, it is unusually common for developmentally disabled people in state care to die for reasons other than natural causes. "One in six of all deaths in state and privately run homes, or more than 1,200 in the past decade, have been attributed to either unnatural or unknown causes, according to data obtained by The New York Times." State officials in New York cannot even agree on how many people are dying. The Office for People With Developmental Disabilities says 933 people in state care died in 2009. The Commission on Quality of Care says 757 did. Neither agency could explain the discrepancy.
New York has made no effort to track or investigate the deaths to look for patterns or trends, resulting in the same kinds of errors and preventable deaths, over and over. The state does not even collect statistics on causes of death, leaving many designated as “unknown,” even after a medical examiner has made a ruling.
The records shows neglect may be contributing to those unexplained deaths. The average age of those who died of unknown causes was 40, while the average age of residents dying of natural causes was 54.
New York, like most states, relies heavily on the operators of the homes to investigate and determine how a person in their care died and, in a vast majority of cases, accepts that determination without investigation or corroboration. Courtney Burke, the commissioner of the Office for People With Developmental Disabilities, which operates and oversees thousands of group homes, acknowledged that her agency suffered from a lack of transparency and what she called “a culture of nonreporting.”
The problems in the New York system appear especially troubling given that the state spends $10 billion a year caring for the developmentally disabled — more than California, Texas, Florida and Illinois combined — while providing services to fewer than half as many people as those states do.