You can help by writing to your representatives asking them to support reform and reauthorization of the Developmental Disabilities Act and passage of H.R. 2032.
EXCERPTS: In State Care, 1,200 Deaths and Few Answers (NY Times)
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 group homes, or more than 1,200 in the past decade, has been attributed to either unnatural or unknown causes, according to data obtained by The New York Times. In deaths not resulting from natural causes there had been concerns about the quality of care in nearly half of the 222 cases. Few states that release such data. [*see Note below.]
What’s more, New York has made little effort to track or thoroughly investigate the deaths to look for troubling trends, and did not take steps to prevent reoccurrence (such as alerts to all group homes), resulting in the same kinds of errors and preventable deaths in group homes, over and over. Responses were typically limited to the group home where a resident died.
The state does not even collect statistics on specific causes of death, leaving many designated as “unknown,” even in cases where a cause is known.
The Times undertook its own analysis of 7,118 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. Some died in fires. Still others ran away again and again until they were found dead.
The data from the state commission, which is responsible for overseeing treatment for the developmentally disabled, included only the broad “manner” in which people died — by homicide or suicide, accidents, natural causes, and “unknown,” the biggest category (10%), other than natural causes. The average age of those who died of unknown causes was 40, while the average age of residents dying of natural causes was 54, which suggests problems in care.
At homes operated by nonprofit organizations, low-level employees were often fired or disciplined, but repercussions for executives were rare. At state-run homes, it is also difficult to take action against state employed caregivers.
New York 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. And the state has no uniform training for the nearly 100,000 workers at thousands of state and privately run homes.
Group homes now care for a vast majority of the New York’s developmentally disabled. Staff training to avoid common mistakes which lead to tragedy (such as chokings, drownings, and fires) should be pursued. Providers are not inclined to make changes unless the state requires it; the state must act.
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November 29, 2011
Dear Members of the U.S. Senate and House of Representatives:
VOR is a national, nonprofit organization advocating for individuals with intellectual and developmental disabilities (ID/DD) and their families.
The disability community is quite diverse, ranging from people with some physical limitations to people whose cognitive and/or physical limitations are so significant that they function at the level of a newborn or an infant and require around-the-clock care.
Families of individuals with profound intellectual disabilities who receive life-sustaining care in congregate facilities (ICFs/MR) fear that the forced eviction of their family members will be a virtual death sentence.
A recent New York Times front page story, “In State Care, 1,200 Deaths and Few Answers," confirms their worst fears (see above). It exposes an unchecked system of group homes throughout New York where 1,200 deaths occurred during a 10-year period due to preventable tragedies such as drowning in bathtubs, fires, choking and wandering. The Times attributes these deaths to a lack of system-wide reporting or staff training.
New York is not alone. There is widespread documented abuse, neglect and death of individuals with profound intellectual disabilities (most of whom are also medically fragile with physical disabilities) in small settings in more than half the states. [*1]
With apparent disregard for the impact on affected residents, many ICF/MR evictions and closures are due to lawsuits and other actions by federally-funded organizations, such as Protection and Advocacy (P&As) and the Department of Justice lawyers.
Congress must act. Legislative solutions are at hand:
A. Pass H.R. 2032, a bill introduced by Reps. Barney Frank, Bob Goodlatte and Debbie Wasserman Schultz, to restore the decision-making authority of individual residents of ICFs/MR and their legal representatives in federally-funded legal actions by P&A and the Department of Justice.
B. Reform and reauthorize the Developmental Disabilities Act to prohibit their programs from using federal funds for downsizing and closing of Medicaid-certified and licensed public and private ICFs/MR, actions which disregard of resident choice and safety, and fly in the face of federal law, including the Supreme Court’s Olmstead decision.
With documented tragedies, why are the federal agencies, which are charged to protect people with disabilities, closing ICFs/MR? Could these federal protectors be more concerned about their reputations than the lives of those Americans they are charged to protec? [*2] People are dying. Residential facilities are necessary and must remain open. Congress must act.
Please contact Tamie Hopp, VOR’s Director of Government Relations at 605-399-1624 or thopp@vor.net with any questions. Thank you for your consideration.
Sybil Finken, Co-President Ann Knighton, Co-President
[*1] See, www.vor.net/abuse-and-neglect
[*2] See, “Neglect for Sale, The American Prospect (November 30, 2000) http://prospect.org/article/neglect-sale (“Because the P&As were so instrumental in closing state institutions, several advocates told us, they fear divulging anything, particularly to the media, that might reflect negatively on community-based programs.”)
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