LINCOLN -- Medical reviews that could have shed light on potential dangers of moving developmentally disabled people from a state institution haven't been conducted as state officials said they would. And a committee has been slow to review the deaths of some of those patients as required by the federal government.
All told, state officials -- including Nebraska's chief medical officer -- say they haven't learned anything from what death rates, experts, and parents of developmentally disabled people who have died indicate was a disastrous decision to force 47 people from the Beatrice State Developmental Center 1½ years ago.
Death rates calculated and reviewed by The Associated Press also show that previous moves may have exacted a toll on former residents of the center, most with severe mental retardation.
"I don't know if there's anything I've learned from that particularly," Dr. Joann Schaefer, the state's chief medical officer, said recently of moving 47 people from the center in 2009. Schaefer ordered the move following a couple deaths at the troubled center that she said showed the facility had turned too dangerous for medically fragile residents.
The lack of lessons-learned exists at the same time officials continue to urge people with severe mental retardation to leave BSDC.
"Some of what happened to them should never happen to anyone, and we should learn from that," advocate Margaret Huss said when told the state hasn't done reviews of the cases and has been slow to do others required by an agreement with the federal government. Huss is on the board of the Mental Retardation Association of Nebraska and warned in a letter to state officials shortly after the 47 medically fragile residents were moved in February 2009 that the sudden move could have "catastrophic results."
"I think the numbers speak for themselves...there was little planning, and decisions made by people with little or no experience with these people," said Huss, whose brother lives at BSDC.
Under an agreement with the federal government, the state had to form a special committee to help identify and promptly resolve preventable causes of death by reviewing deaths of BSDC clients, including the medically fragile removed from BSDC in early 2009.
But to date, the committee has reviewed just three of the 12 deaths of medically fragile former residents who were moved and less a dozen other deaths of BSDC clients since 2007. An expert appointed to review progress at BSDC said it took nearly a year after some deaths before reports were finalized.
"Such lapses in time have the potential to render the information useless," said Maria Laurence, the expert appointed to monitor the state's progress in meeting the terms of a 2008 settlement with the U.S. Department of Justice over poor conditions at BSDC, in a June report.
Jodi Fenner, the state's developmental disabilities director, said a second committee of medical professionals has been formed to review deaths, which could increase its work production.
Also incomplete is a review that Schaefer said a year ago two nurses with no connection to BSDC would do.
Schaefer said at the time that part of the job of the nurses would be to review how the conditions of the medically fragile she forced to leave BSDC were managed after they left. The intent of the review, she said, was not to determine whether the move affected their health conditions.
Schaefer said she decided later not to have the reviews done because they would have been redundant. She said she was getting regular information she was satisfied with from state staff.
An official at a national advocacy group sharply criticized Nebraska's handling of the move of the medically fragile and apparent lack of knowledge about the potential problems associated with transitions.
It is widely known in the field of treatment for developmental disabilities that moves can cause what is known as "transfer trauma," causing serious health conditions and increasing the chances of death, said Tamie Hopp, a director at Voices of the Retarded, a national advocacy group that has monitored the issue in Nebraska.
"It was a cure worse than the problem," Hopp said of the transfer. "That's borne out by the high number of mortalities."
Among them was Brady Kruse, who died in November, nine months after he was moved from BSDC along with 46 others. His father, Terry Kruse, said his son got good care at the Lincoln hospital he was sent to after leaving BSDC but while there, became unresponsive and unconscious on three occasions - something he said never happened during Brady Kruse's more than 30 years at BSDC.
Two weeks after moving to a small facility in Omaha that Kruse said provided good care to his son and that was intended to be his permanent home, he died.
Kruse is convinced the moves led to medical problems and that his son never recovered from the initial move.
"You think 12 out of 47 dying is just a fluke?", said Kruse, who's trying to contact other parents of the medically fragile and has lobbied lawmakers hard to help developmentally disabled people waiting for services
"It's not a coincidence, give me a break," he said.
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An Associated Press review of deaths of BSDC residents and former residents shows that the move of the medically fragile in February 2009 and moves that occurred the year before may have had severe consequences:
* The death rate among the group of 47 medically fragile -- 12 who died within a year of the move -- was more than nine times higher than the death rate among all BSDC residents both in 2008, when medically fragile people still lived at BSDC, and 2009. In 2008 when the medically fragile still resided at the center, just seven of BSDC's 267 residents died, compared to 12 of the 47 medically fragile who died within a year of being moved in early 2009.
* The death rate among residents moved out of the center in 2008 before the order to remove the medically fragile was more than five times higher than the rate at BSDC that same year. In 2008, when seven of BSDC's 267 residents died, 74 others were discharged from the institution. Eleven of those died within a year of being moved. That is just two fewer deaths than occurred in all of 2007 at the center, when there were nearly 340 residents.
Schaefer and Fenner questioned the AP's comparison of the mortality rate of people moved in 2008 to residents who stayed at the center.
Fenner said more of those people may have died simply because they were elderly.
Schaefer said the death rate of those who were moved may have been higher because they were mortally ill and were moved to hospice care during what parents or guardians knew were the last days of their lives.
Fenner, however, acknowledged just one person has been discharged from BSDC the past few years to be placed in hospice.
They said comparisons of mortality rates can't be done without more information and a scientific study.
Asked if deaths of the medically fragile offered any lessons about possible effects of transferring people with developmental disabilities, Fenner said: "Not that I'm personally aware of."
Schaefer said she'll never know if the moves she ordered in 2009 caused deaths, but that she believes transitions can cause stress.
"So one can further make the leap that if they were already medically stressed, you know, it doesn't take much to make a connection," she said. "How much of a connection was there? We'll never know."
Schaefer said she'd make the same decision again. More of the medically fragile may have died had they stayed at BSDC, and the conditions surrounding their deaths at the center "might not have been very pleasant."
Fenner said the state has changed how people are moved from BSDC. What used to be a one-size-fits-all process is now a more flexible system that fits individual needs, she said.
If it's decided a developmentally disabled person, for example, needs a long segue into community-based care, staff from the new facility will meet with the person at BSDC. And after moves are made, BSDC staff sometime go to the new residences so people they may have seen daily for decades can see familiar faces.
Because the process is still new, it's difficult to determine whether it's helping reduce mortalities.
People continue to move out of the center and into community-based settings at the urging of the state. The Beatrice center now has about 170 residents, half the population at the center just three years ago.
The moves are part of a longtime national trend away from large institutions some advocates like Hopp believe are too often driven by ideology that ignores the fact some people do better in larger, congregate settings like BSDC.
Also, for more than two years, a centerpiece of the state's strategy to improve care at the center has been to reduce the population.
Fenner said she thinks all the remaining, 170 residents of the center could conceivably be moved to community-based programs as long as they had the proper support. Resistance from residents and guardians, she said, is the main reason they haven't left.
She doesn't see any reason some people shouldn't be moved because doing so might cause health problems.
"I'm not aware of anything like that," she said.