Overdruged Seniors

A Startling Cause of Misdiagnosed Dementia

By Jeff Anderson on October 24, 2012
| October 24, 2012 More

Look in any senior’s medicine cabinet and you’ll likely see a vast assortment of pharmaceuticals. In 2010, the Kaiser Foundation reported that the average senior is taking six prescription drugs daily. Some seniors take twice that amount.  Many seniors add one or two new prescriptions to their daily routine each year until it gets to the point where it would take a database to organize them all. Often, the senior and the senior’s family do not fully understand which pill does what, when to take each pill, what side effects to look out for, and so on. It’s medication chaos.

The risk of medication chaos increases as seniors see multiple specialists and do not have a primary care physician who is responsible for the big picture and what all these medicines are doing in concert. The results can range from acute episodes of toxicity—a bad reaction leading to an emergency room visit— to outright misdiagnosis of illnesses. In fact, the Alzheimer’s Association reports, “Medication induced dementia is the most common cause of misdiagnosed or ‘reversible’ dementia.”Older Woman with Book

How Medication Side Effects Can Masquerade as Dementia

Drug interactions and side effects often mimic the symptoms of age-related cognitive disorders. For example, drugs that affect cognition and mobility, such as anti-anxiety meds, can make dementia symptoms worse—or even create a facade of dementia in people who don’t suffer from the disease, a condition known as pseudodementia. For instance, many anti-anxiety drugs commonly prescribed to seniors such as Valium and Xanax have side effects that are indistinguishable from dementia including:

  • Short-term memory loss
  • Disinhibition
  • Hallucinations

Of course, at high does, negative reactions like these are even more likely. Other medications can also cause pseudodementia, including cholesterol lowering statin drugs like Lipitor, which many seniors take. In fact, any medicine that can cause cognitive impairment could lead to a misdiagnosis of dementia. Classes of drugs including anti-histamines, antibiotics, corticosteroids, anticonvulsants, antiemetics, muscle relaxants and opioid pain killers all carry this risk.

While the right medicine can reverse the course of serious diseases and improve a senior’s quality of life immeasurably, medications also cause problems. We received this pointed comment on our Senior Living Blog, which is worth quoting in full:

“My mother was fading fast. In the course of two months, she went from needing general assistance to not being able to stand or assist with her own transfers. She went from minor memory lapses to neither recognizing people nor her surroundings. Over the course of about three weeks, she had deteriorated to the point where she could not take her medications. Without meds, she regained her mind and most of her mobility. It came down to the medications she was on. We began reintroducing them one at a time with minimal doses for the most important issues. If we saw a return of symptoms of dementia, we would reverse course and she would come right back. It has made me wonder how many of our elderly end up in homes, or deteriorate catastrophically because they are on too much medication. It almost killed my mother. She’s 80 years old. Who cares if her cholesterol is a little elevated if the combining of her meds is destroying the last years if her life?”

This reader’s fears are not unfounded.  A 2012 study published in online Medical Journal PLOS One found that 20% of the medications prescribed by seniors’ primary care physicians are inappropriate because they could cause adverse reactions.  The same study from PLOS One found that 35% of seniors’ medical reactions occur in outpatient settings, suggesting that at a supportive environment with medication management, these unintended side effects would be reduced.

Senior Living and Non-Chemical Approaches

For many seniors, a move to an assisted living community can help get this medication chaos under control. Most assisted living communities require that residents have a doctor’s visit before admission. Families and physicians often use this visit as an opportunity to “press the reset button” on prescriptions. A complete reassessment of the senior’s medication regime can (and should) take place at this time. Under doctor’s supervision, many seniors are able to go off of medicines that are redundant, have outgrown their usefulness, or are outright contraindicated.

Once a senior is admitted to assisted living, a care plan is put in place. Care plans lay out goals and strategies for the resident’s care, and medicines are a big part of the equation. The community, family, senior and medical professionals discuss what medicines will be given to the resident, why, and often set goals for reducing them. In fact, seniors, particularly those with Alzheimer’s and dementia, are often able to reduce their medications after moving to assisted living communities with memory care.

For example, many seniors who have been prescribed anti-anxiety medications we discussed above find themselves in an undignified stupor that’s not only painful for loved ones to witness, but also can lead to falls, head injuries and broken bones. Today’s memory care communities instead attempt to reduce agitation and anxiety non-chemically with methods such as:

Loren Shook, CEO of Silverado Senior Living, which specializes in memory care, confirms that many residents who move to Silverado communities are able to significantly reduce their medicine intake, and with great benefit.

Medication Management and Healthy Senior Living

While decreasing the amount of prescribed medications is ideal, it’s not always possible. In some cases, seniors require every medicine they’re prescribed. But even in these cases, assisted living plays an important role. Even if medicines can’t be reduced, it’s important that that they be taken correctly. Medication management, which is offered at nearly all assisted living communities, assures that seniors get the right medicine, at the right dose, at the right time.  For seniors with a cornucopia of medicines, or with memory loss, this benefit alone can be a lifesaver.

If your older loved one is on more medicines than anyone can reasonably be expected to keep track of, or is showing changes that you believe may be related to drug interactions, arrange a doctor’s visit to reevaluate medications. Talk to the doctor about what medicines are essential, and what medicines may be doing more harm than good. And if your older loved one cannot take medication safely, and you can’t be there to help, consider memory care or residential home care. Our Senior Living Advisors can help your family find the most appropriate options for loved one.

What are your experiences? Have medication side effects or reactions led to your loved one being misdiagnosed? Are you a medical professional with your own thoughts? We welcome your comments below.

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The Crushin Costs of Care

The Crushing Cost of Care

A small percentage of challenging cases, often at the end of life, make up the great bulk of Medicare spending on hospital care. Are we anywhere close to containing the costs?


[image]Getty ImagesPatients themselves rarely make plans for dying, the period that typically costs the most.

On Valentine’s Day 2009, Scott Crawford, 41 years old, received the break that he thought would save his life. A surgeon at Johns Hopkins Hospital in Baltimore removed his ailing heart and put in a healthy one. The transplant was a success.

An Ailing Patient, Rising Costs

See an interactive timeline



But complications put the former tire-warehouse worker in intensive care for almost a year. Surgeons removed his gall bladder, his left leg and part of a lung. And Mr. Crawford soon became one of the most expensive Americans on Medicare.

A sliver of the sickest patients account for the majority of Medicare spending – and young people can often have the highest costs. WSJ’s Janet Adamy discusses the case of Scott Crawford, who became one of the most expensive Americans on Medicare.

As his condition turned grave, one of his doctors questioned whether to keep treating him. Nurses reported feeling “moral distress” over his unrelenting pain. Still, medical opinion was split, and Mr. Crawford’s family, with the backing of his transplant surgeon, pushed forward.

A few days before Christmas 2009, Mr. Crawford died, leaving behind a young son.

According to a Wall Street Journal analysis of Medicare data, the government spent $2.1 million on his inpatient and outpatient care in 2009. That was the fifth costliest of all Medicare beneficiaries that year and the highest among those who died by that year’s end. Medicare covered Mr. Crawford’s costs through federal disability insurance.

A primary goal of the 2010 health-care overhaul that the Supreme Court upheld last week is to slow the growth of costs. Even so, the law does little to address a simple fact: A sliver of the sickest patients account for the majority of U.S. health-care spending. In 2009, the top 10% of Medicare beneficiaries who received hospital care accounted for 64% of the program’s hospital spending, the Journal’s analysis found.

The Saturday Essay

Younger patients like Mr. Crawford were more expensive, representing just 18.5% of the beneficiaries who received hospital care but 23.7% of the total cost. Seniors vastly outnumbered them, however, and consumed 76% of the total hospital costs.

As for Medicare’s long-term cost trajectory, it is relentlessly upward. The program’s net expenditures totaled $486 billion last year, according to the Congressional Budget Office, or 13.5% of all federal expenditures. In March, the CBO projected that Medicare expenditures would grow an average of 5.7% per year through 2022 and equal 16.2% of all federal outlays.

Medicare patients rack up disproportionate costs in the final year of life. In 2009, 6.6% of the people who received hospital care died. Those 1.6 million people accounted for 22.3% of total hospital expenditures, the Journal’s analysis shows.

But efforts by policy makers to tackle the question of end-of-life care have foundered recently. In the debate over President Barack Obama’s health-care overhaul, an initiative to help Medicare beneficiaries plan end-of-life care sank after opponents labeled it a “death panel.”

“We’re always going to have patients in the Medicare program that need a disproportionate number of resources,” said Jonathan Blum, deputy administrator and director for Medicare. As for Mr. Crawford, “A lot of the costs were driven by complications that could have been avoided,” he said, citing an early infection as an example.

Melissa Golden for The Wall Street JournalScott Crawford’s parents, Wayne and Judy. ‘I just felt that, up until the last day,’ Wayne said, ‘they were going to save him.’

Peter Pronovost, a Johns Hopkins critical-care specialist who helped treat Mr. Crawford, said that the hospital has dramatically reduced infection rates. Still, some patients get infections, he said, and the hospital didn’t know whether Mr. Crawford’s was avoidable.

Many factors can make a patient’s care expensive. Doctors are trained to push the boundaries of what is possible. Families want to exhaust their options. Patients themselves rarely make plans for dying, the period that typically costs the most.

This tension helps to explain why reining in costs is so difficult. For patients like Mr. Crawford, “There’s almost an assumption on everyone’s part that if heroic things need to be done, we’re going to do them,” said Ilan Wittstein, a cardiologist at Johns Hopkins who treated Mr. Crawford for a decade.

Notably, the costliest patients aren’t necessarily the oldest, even though Medicare mainly cares for people 65 or older. Of the top 10 costliest people on Medicare in 2009, eight were on disability, including Mr. Crawford. Disability is the main way people under 65 qualify for Medicare.

This account of Mr. Crawford’s life and death is based on interviews with his family, physicians, Johns Hopkins finance officials and Medicare officials. The Journal reviewed hospital medical records, plus billing records from the hospital and Medicare. The agency’s billing records don’t include patient names.

Growing up in Cumberland, Md., Mr. Crawford played Little League and spent hours hunting with his brother. “He’d always been healthy,” said his mother, Judy Crawford. In high school, he juggled jobs at a Chinese restaurant and a retailer, where he worked his way up to becoming a jeweler.

In the summer of 1994, when he was 26, Mr. Crawford started feeling unusually fatigued. He was diagnosed with idiopathic dilated cardiomyopathy; his heart was enlarged and couldn’t pump efficiently. The condition had no clear underlying cause. Mr. Crawford didn’t smoke, was 6-foot-2 and weighed 225 pounds.

For a few years, drugs controlled his condition. Mr. Crawford married, had a son, Nicholas, and worked at a warehouse hoisting truck tires. Insurance through his wife’s employer covered prescriptions and checkups at Johns Hopkins. Dr. Wittstein, his longtime doctor, warned him he would need a transplant and considered him “a great candidate” for it, being young and otherwise healthy.

While awaiting a donor, Mr. Crawford needed a defibrillator to restart his heart in case it malfunctioned. Too fatigued to work, he applied for Social Security disability benefits. Through that program, he became eligible for Medicare in 2005. His marriage frayed and in July 2008, Mr. Crawford divorced.

Medicare costs accumulated. The program spent $275,744 on treatments including a heart pump to keep him alive after his heart failure worsened. Another $75,852 went to implant the defibrillator.

Mr. Crawford spoke to his family about wanting to live simply to hold his son on his lap and watch him grow. He also said he didn’t want to be kept alive if he was “a vegetable,” said his father, Wayne Crawford.

Just before New Year’s Eve 2008, a donor heart materialized. Doctors put Mr. Crawford under anesthesia, but ultimately halted the transplant because the donor heart wasn’t squeezing well enough, Dr. Wittstein said.

On Valentine’s Day 2009, a second heart came through. Ashish Shah, a cardiothoracic surgeon, performed the transplant.

Mr. Crawford’s new heart eventually performed well, but not the rest of him. His gallbladder became gangrenous and was removed. His left foot started turning purple, so his mother would sit by his bed, rubbing his toes. A dermatologist labeled his prognosis “grave,” medical records show.

He suffered from sepsis, a severe infection, and doctors zeroed in on Mr. Crawford’s left leg as the potential source. It was amputated above the knee.

The next day, a bigger worry surfaced, a multi-drug-resistant acinetobacter, a deadly type of bacteria. Dr. Shah had never seen a patient survive that type of infection.

But at the same time, Dr. Shah was optimistic about the new heart’s performance and believed recovery wasn’t inconceivable. Plus, having received a precious donor heart, there was “a stewardship that goes beyond the individual patient,” Dr. Shah said, and extends to the donor out of respect for that person’s gift.

Medicare spent $376,336 on the transplant, according to its records. Only a fraction of the bills went to Mr. Crawford. Under Medicare’s policy, the program pays for certain services for 60 days, minus a deductible. Medicare charged Mr. Crawford $1,024 for the first 60 days of treatment. During that period, Medicare paid out more than $800,000 for his care.

Medicare passed some costs to secondary insurance Mr. Crawford held through a subset of Maryland’s Medicaid program for lower earners.

Mr. Crawford’s kidneys failed. He was put on dialysis. Respiratory failure put him on a ventilator. He could only mouth words, not speak them. “Don’t forget about my taxes,” he told his father around April.

Physical therapists visited to help work toward recovery, but Mr. Crawford at one point indicated that all movement hurt. “Help me,” he mouthed during one session, his records show.

By mid-July, Mr. Crawford’s insurance hit a wall. After 150 days in a hospital, Medicare stops covering most inpatient care, though it still pays some ancillary expenses. At July’s end, Medicaid also ran out because it wasn’t renewed, leaving Mr. Crawford without comprehensive coverage.

Around that time, Dr. Pronovost, the critical-care specialist, sat down with the patient’s father, Wayne Crawford, on a bench outside the intensive-care unit. In direct terms, Dr. Pronovost—who is also a high-profile health-policy expert—told him he didn’t think his son was going to make it.

“You need to help us understand what Scott would want,” he recalls saying. “Do you want us to keep moving forward with these therapies?”

[image]Crawford familyScott Crawford

“You mean take his life?” Wayne Crawford recalls asking.

Dr. Pronovost said that wasn’t what he was saying. “I just want to make sure you understand what his prognosis is,” Dr. Pronovost recalls responding.

Wayne Crawford raised his voice. “I guess the money is the problem,” he recalls telling Dr. Pronovost.

Dr. Pronovost said money wasn’t the issue. Wayne Crawford told the doctor he wasn’t ready to give up.

In an interview, Dr. Pronovost confirmed the exchange and said he didn’t raise the subject of cost beyond suggesting that Wayne Crawford check his son’s benefit caps. He also said the conversation wasn’t prompted by Mr. Crawford’s lack of insurance.

Shortly after, Dr. Pronovost made clear he had concerns about the cost of treatment in cases like Mr. Crawford’s. He penned an op-ed that ran in the Journal on Aug. 12, 2009, during the height of the “death panel” debate about the proposed U.S. health-care overhaul.

Without naming Mr. Crawford, Dr. Pronovost cited his case to illustrate how patients with bleak prospects are kept alive without objective consideration of their survival chances or cost. He put the patient’s tab at more than $1.5 million. “If we are ever to control rising health costs, we will have to do a better job confronting the realities for patients like this man,” he wrote.

Dr. Pronovost confirms that he was referring to Mr. Crawford. The reporters of this article weren’t aware of the op-ed when choosing Mr. Crawford as a subject.

Wayne and Judy Crawford had reason to press forward: The doctors disagreed about their son’s prognosis. The family was meeting weekly with the transplant surgeon Dr. Shah, their son’s main physician, and he told them there was a chance for survival. The new heart continued to work brilliantly, despite Mr. Crawford’s other ailments. “The rest are wounds that should heal in a guy his age,” Dr. Shah said in an interview.

[image]Keith A. WebbIn 2009, Medicare spent $2.1 million on Scott Crawford, making him the fifth costliest of all that year’s beneficiaries.

Dr. Wittstein said he asked Mr. Crawford at various points whether he wanted to keep going with treatment. The answer: yes. “He was clear about that,” Dr. Wittstein said. And Mr. Crawford occasionally showed improvement.

In late August, a nurse alerted the hospital’s ethics team that some nurses were feeling “moral distress” in caring for Mr. Crawford, according to his medical records, due to his overwhelming pain. “Several reported feelings of dread or guilt in taking care of the patient,” the records said.

Basic procedures like changing wound dressings left Mr. Crawford “grimacing, beating his hands against the bed railing, and crying,” the report said, indicating that pain control was falling short.

But at the same time, the Crawford family was complaining that too much pain medication left Mr. Crawford doped up and unable to complete the physical therapy necessary for a real recovery. The nursing complaint prompted Johns Hopkins to invite Wayne and Judy Crawford in for an “ethics consult” on Sept. 2 that the family says was unexpected.

Hospital officials asked the Crawford’s their short- and long-term goals. “There is a consensus [Mr. Crawford] has an uphill battle,” team members concluded in the meeting, according to a summary. They told the parents the hospital had no plans to limit or withdraw care.

Wayne and Judy Crawford interpreted the meeting as a nudge to consider ceasing treatment because their son’s insurance had largely run out.

In an emotional response, they told the staff they didn’t want their son to suffer, and understood they may never take him home. At the same time, the Crawfords said they wanted everything possible done.

“This is the No. 1 hospital,” Wayne Crawford recalls saying. If the nurses couldn’t handle their son’s care, he said, they should transfer out of that unit.

His response left hospital officials speechless, Dr. Shah said.

Dr. Shah says the meeting was prompted by concern for Mr. Crawford’s suffering and not insurance.

By the fall, Mr. Crawford’s wounds had spread. He couldn’t speak, but would open his mouth to scream, medical records show.

Doctors decided the infection was tied to an abscess on his left lung and removed part of the lung. Although his full coverage had run out under Medicare’s rules, the agency paid $653,744 for the surgery and other treatments.

Mr. Crawford initially perked up, then resumed his decline. In late December, as Wayne and Judy were celebrating Nicholas’ 11th birthday, a nurse called to say Mr. Crawford was deteriorating quickly.

His parents and his sister, Gina Russell, arrived. Sepsis had overwhelmed his system. Death was near.

“Something just snapped in me that said, ‘This is the end,'” Wayne Crawford said. He decided the hospital should take his son off the machines keeping him alive.

Judy Crawford rubbed her son’s hair and Ms. Russell held her brother’s hand. He died Dec. 22, 2009.

Johns Hopkins estimates Mr. Crawford’s claims for 2009 totaled $2.7 million, and that $766,919 remained unpaid. The total is higher than the number logged by Medicare, because the agency didn’t cover all Mr. Crawford’s costs.

After inquiries from the Journal, Medicare determined it overpaid Johns Hopkins $316,348 because it erroneously paid for some treatments after Mr. Crawford’s full coverage ran out. The agency said it has recouped that money from the hospital. A Johns Hopkins official said the hospital is pursuing some payments through Medicaid but doesn’t plan to pursue the matter further.

Mr. Crawford’s physicians still disagree on how they handled his case. Dr. Pronovost says doctors let Mr. Crawford suffer by continuing treatment so long. “We’re really, really good about keeping patients alive,” he said. “We’re less good about altering whether they live or die in the end.”

Dr. Shah thinks that if he had the case to do over, “it’s not obvious” he would treat Mr. Crawford differently. “Even knowing that bad things were happening to him, it would have been equally agonizing to withdraw support on him,” Dr. Shah said.

Wayne Crawford agrees. “I always got up and went to the hospital every morning with the hope that he had improved,” he said.

“I just felt that, up until the last day,” he said, “they were going to save him.”

Write to Janet Adamy at janet.adamy@wsj.com and Tom McGinty attom.mcginty@wsj.com

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Health care wanted in United States Bayport NY 1177

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Times article: retitled Health Centers are Dangerous

In State Care, 1,200 Deaths and Few Answers

Steve Jacobs/Times Union

A 2009 fire at a group home in Wells, N.Y., that killed four disabled residents revealed shortcomings in staff training and safety standards.

By and

For James Michael Taylor, an evening bath became a death sentence.



Abused and Used

Unnatural Causes

Articles in this seriesexamine the treatment of the developmentally disabled in New York State and how money is spent on their care.

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Photograph courtesy of Taylor Family.

James and Joan Taylor. He drowned when he was left in a bathtub in 2005.

Readers’ Comments

Mr. Taylor, who was 41 and a quadriplegic, had little more ability than a newborn baby to lift his head. Bathing him required the constant attention of a staff member at the group home for the developmentally disabled where he lived, near Schenectady, N.Y.

One summer night in 2005, a worker lowered Mr. Taylor into the tub, turned on the water and left the room. Over the next 15 minutes, the water slowly rose over his head. He drowned before anyone returned.

Joan Taylor, his mother, remembers the words her husband said as dirt was shoveled onto their son’s grave.

“This is the last time they’re going to dump on you,” he told his dead son.

James Taylor’s death was no aberration.

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 that has never been released.

The figure is more like one in 25 in Connecticut and Massachusetts, which are among the few states that release such data.

What’s more, New York has made little effort to track or thoroughly investigate the deaths to look for troubling trends, resulting in the same kinds of errors and preventable deaths, over and over.

The state does not even collect statistics on specific causes of death, leaving many designated as “unknown,” sometimes even after a medical examiner has made a ruling.

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.

Mr. Taylor was hardly the only resident to drown in a bathtub. Another developmentally disabled man at a house run by the same nonprofit organization drowned in a tub four months earlier.

Through a Freedom of Information request to the State Commission on Quality of Care and Advocacy for Persons With Disabilities, The Times obtained data for all 7,118 cases of developmentally disabled people — those with conditions like cerebral palsy, autism and Down syndrome — who died while in state care over the past decade.

The data from the agency, which is responsible for overseeing treatment for the developmentally disabled, included only the broad “manner” in which people died — by homicide or suicide, accidents or natural causes.

By far the biggest category, other than natural causes, was “unknown,” accounting for 10 percent of all deaths in the system.

The records suggested problems in care 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.

The Times reviewed the case files of all the deaths not resulting from natural causes that the commission investigated over the past decade and found there had been concerns about the quality of care in nearly half of the 222 cases.

The records also showed that problems leading to deaths rarely resulted in systemwide steps, like alerts to all operators of homes, to prevent mistakes from recurring. Responses were typically limited to the group home where a resident died.

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 caregivers, who are represented by unions that contest disciplinary measures.

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 and institutions.

The value of analyzing death records for problems in care that could be prevented through alerts or training has been well established, and is encouraged by the federal Government Accountability Office. Officials in Connecticut, for example, noticed four chokingdeaths in 2006, the first year the state published such data. They developed a statewide program — two days of initial training and a refresher course every two years thereafter. The state has had just one choking death since 2007. New York has had at least 21 during that same per“

It’s incredibly important,” said Terrence W. Macy, commissioner of the Department of Developmental Services in Connecticut. “If everybody knows you study it this hard and you have this level of detail, it’s going to have an impact.”

Bill Trojan/The Leader-Herald

A service for victims of the 2009 fire in Wells, N.Y., that killed four disabled residents. Stricter safety standards might have prevented the fire.



Abused and Used

Unnatural Causes

Articles in this seriesexamine the treatment of the developmentally disabled in New York State and how money is spent on their care.

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RICHARD WIDMEYER, 71:  Mr. Widmeyer choked on a piece of bread that he had taken from a kitchen in a state-run home in Rome, N.Y., in 2004. The staff had supervised him during meals because of his history of eating too fast, but did not restrict his access to food at all times.

Readers’ Comments

There is no question that it can be extremely challenging to care for the developmentally disabled, a population that includes some people who are fragile and immobile and others who are unruly and inclined toward violence. But 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.

Lawsuits are relatively rare after the deaths of developmentally disabled people in New York, in part because economic damages are difficult to prove, given that the victims are seldom employed. And sometimes families are simply grateful to the group home for years of care for their relative.

This year, Gov. Andrew M. Cuomo forced the commissioners of the two agencies that oversee the developmentally disabled to resign amid a Times investigation of group home workers who were beating and abusing residents.

In interviews, the officials who replaced them acknowledged problems with how the state tracks and seeks to prevent untimely deaths.

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.”

“One of the things I’m seeking to do,” she said last month, “is have better data on those deaths.”

A Recurring Problem

One evening last year, a large piece of London broil was left marinating in the refrigerator of a state-run group home in the hamlet of Golden’s Bridge, in Westchester County.

The kitchen was supposed to be locked overnight. As in many homes for the developmentally disabled, residents known to be at risk for choking were not allowed to be left alone with food. But the kitchen was open during the early morning of June 5, 2010. No one noticed as Cynthia Dupas left her bedroom, opened the refrigerator and bit off a chunk of raw beef. She collapsed outside her bedroom and died. She was 51.

Hers was hardly an isolated case. A quarter of the 222 death files reviewed by The Times involved a person choking to death. And given the state’s poor recordkeeping, the actual number of choking deaths is likely larger. The deaths often occur when residents try to eat food too quickly; physical limitations also play a role. Some of the fatalities came in quick succession:

At a home near the Finger Lakes in 2001, a resident died after stuffing down a steak that was left on the kitchen counter after dinner, in violation of safety guidelines for several residents.

Four months later, Maxwell Chanels died at a Schenectady-area group home after being left alone to eat a steak. A nonprofit group that cared for Mr. Chanels during the day had determined he was a choking risk who required mealtime supervision, but a second nonprofit agency that ran the group home where he lived had no such protections in place. He was 66.

Less than two weeks later, Virgil Macro was served a breakfast that had not been prepared according to a meal plan devised to keep him from choking. Staff members at his Dutchess County group home also failed to supervise him while he ate. He was 39.

In each case, the response suggested by the Commission on Quality of Care was mostly limited to the place where the death occurred. Workers who made mistakes were disciplined. Some employees in the home, or the local area, were retrained.

But other states take broader action.

In 2006, Ohio officials recognized an increase in choking deaths and issued a statewide alert.

A year later, California officials noticed a similar rise in one part of the state and began an educational program that reduced deaths.

A lack of standards and accepted definitions of basic terms also leads to deadly confusion.

Terms like “bite-size” and “chopped,” which are key to defining what is safe for a person to eat, can be left open to interpretation by the staff at a given institution or group home.

JAMEL TERENCE CHRISTIAN, 23: Mr. Christian choked to death in 2003 in a group home run by a nonprofit organization in Rensselaer, N.Y. An investigation questioned whether a plan to prevent him from eating dangerously fast had been put into effect.



Abused and Used

Unnatural Causes

Articles in this seriesexamine the treatment of the developmentally disabled in New York State and how money is spent on their care.

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The Commission on Quality of Care regularly asks individual homes to revisit those definitions, but the state has not resolved varying interpretations.

In contrast, Connecticut’s training materials, which the state credits with sharply reducing choking deaths, precisely define such terms with photographs and dimensions.

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.

Outside experts said they were particularly puzzled that records maintained by the state would list the cause as “unknown” in more than 700 deaths over the past decade, and wondered how hard state officials had tried to determine what happened.

Bruce Simmons was one of the many people the state had listed as dead of unknown causes. But a review of the records from the state’s own investigation reveals what occurred. He lived in a group home in Cortland, N.Y., which kept him under tight supervision around food because of his history of stealing food and choking. But the nonprofit group that took care of him during the day decided that was not necessary, and he choked to death in November 2008. He was 52.

Lapses in Fire Safety

All that is left of the house at 1534 State Route 30 in the Adirondack town of Wells is a grassy field and an empty driveway.

More than two and a half years ago, the house, home to nine developmentally disabled residents, burned to the ground, killing four of them.

The fire revealed shortcomings in staff training and safety standards. And the home’s evacuation plans were based on unrealistic expectations that developmentally disabled residents would be able to flee in an emergency.

Large institutions for the developmentally disabled are built much like hospitals, with extensive fire safety measures. The group home had some safety features, like sprinklers in parts of the house, but was permitted to meet building codes akin to those of homes with able-bodied residents who know they should flee from a fire.

Yet though the Wells fire took place in March 2009, the state has not undertaken a broad review of whether group homes, which now care for a vast majority of the state’s developmentally disabled, have appropriate safety modifications to protect residents who often do not understand that they are in danger.

The fire at the house, known as Riverview, occurred in the early morning, starting in a trash can on a screen porch and spreading rapidly up vinyl siding into the attic of the L-shaped, one-story residence.

An automatic alarm call was made at 5:25 a.m. to a monitoring company. The protocol established by the Office for People With Developmental Disabilities required that the company call the group home before notifying the Fire Department, which wasted minutes and violated state fire standards. By 5:30, the local fire company was dispatched, alerting Ken Hoffman, a firefighter who lived across the street and rushed over to help.

When Mr. Hoffman arrived, all nine residents were still inside, but he and two staff members helped most of them evacuate. Then one resident fell, distracting the two staff members as three residents wandered back into the burning house, according to state records.

There were further complications. The state had not informed local fire officials about the presence of the group home, leaving them ill prepared.

“There was no contact,” said Peter Byrne, a Rockland County fire safety official who was on the panel of experts convened by the state after the fire. “If I roll into a single-family dwelling at 2 or 3 in the morning, I’m expecting mom, dad and 2.3 kids, whatever the average is, not 11 challenged individuals.”

Credible investigations were performed — one by a local grand jury, one by the State Office of Fire Prevention and Control, and another by the panel that included Mr. Byrne.


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Nusing Homes Seeks Exemptions from OBAMA CARE


The Nursing homes  industry is lobbying congress saying that they cannot pay Health care workes’ insurance;  the same insurance that allows the industry to function.

Nursing Homes Seek Exemptions From Health Law

Rick Scibelli Jr. for The New York Times

Joanna D. Knox says her New Mexico nursing home cannot pay more for employee coverage.

Published: May 15, 2011

WASHINGTON — It is an oddity of American health care: Many nursing homes and home care agencies do not provide health insurance to their workers, or they pay wages so low that employees cannot afford the coverage that is offered.

Rick Scibelli Jr. for The New York Times

Vanessa Valerio, a nursing assistant, says she cannot afford the $25 monthly payment toward insurance at Ms. Knox’s facility.


The numbers are stark. Among workers who provide hands-on care to nursing home residents, one in four has no health insurance. Among those who provide care to people living at home, one in three is uninsured.

The new health care law is supposed to fix the problem by guaranteeing access to affordable coverage for all. But many nursing homes and home care agencies, alarmed at the cost of providing health insurance to hundreds of thousands of health care workers, have started a lobbying effort seeking some kind of exemption or special treatment.

Mark Parkinson, president of the American Health Care Association, the largest trade group for nursing homes, says the problem is that reimbursement rates for Medicaid and Medicare, set by government agencies, do not pay them enough to offer their employees medical coverage. “We do not have much ability to increase prices because we are so dependent on Medicaid and Medicare” for revenue, he said.

Mr. Parkinson acknowledged that when nursing homes do offer health insurance to employees, the benefits are often limited. The coverage “is probably not up to what will be required” by the federal law, he said.

Medicaid covers about two-thirds of nursing home residents. States set Medicaid rates, and many states, facing severe budget problems, have reduced payments for nursing homes.

Starting in 2014, the law will require employers with 50 or more full-time employees to offer affordable coverage or risk paying a penalty. For a midsize nursing home, that penalty could easily exceed $200,000 a year. Nursing home executives are urging Congress and the Obama administration to spare them from the penalties.

Vanessa Valerio, 25, a certified nursing assistant who earns $10 an hour at Lakeview Christian Home in Carlsbad, N.M., said she was uninsured because she could not afford the coverage offered by her employer.

The chief executive of the Lakeview nursing home, Joanna D. Knox, said the company used to pay the entire premium for employees. It now requires workers to pay $25 of the $585 monthly premium for individual coverage.

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Long Term Health Care Insurance, approx $110 per month

Public option for long-term are insurance faces challenges

Posted on 17 March 2011

The public option for long-term care insurance is on the run.

The Community Living Assistance Services and Support plan (CLASS for short) was a little-noticed provision of the broader health care reform law passed last year. It aims to fill the current gap in long-term care (LTC) protection by offering modestly-priced coverage that emphasizes more flexible, community-based care over nursing homes.

But CLASS is under fire from critics who charge that it won’t be financially sustainable and will create a long-term drag on the federal deficit. President Obama’s deficit commission recommended reform or repeal of CLASS last December; Republicans in Congress are pushing for the latter option.

The Obama Administration is acknowledging the problems, and pledging to make adjustments. Health and Human Services Secretary Kathleen Sebelius made public comments recently indicating her department is addressing financial sustainability issues as it writes the rules and regulations for CLASS ahead of its anticipated 2013 rollout.

It’s not clear if CLASS will survive, but this much we know: The country will need to figure out how best to finance the cost of long-term care, which is expected to explode in the next several decades as the population ages.

The Center for Retirement Research at Boston College (CRR) says about one-third of Americans turning 65 this year will need at least three months of nursing home care sometime during their lives.

Medicare covers only a small portion of long-term care needs, and the cost of a semi-private room averages $79,000 per year. CRR calculates that the mean lifetime exposure to long-term care costs for a 65-year-old couple is $260,000, with a five percent risk of a $570,000 expense.

Medicaid remains the nation’s largest LTC funder, paying for more than 40 percent of all care, But in most states, qualifying for Medicaid requires spending assets down to poverty levels, and the choices for care are limited. Meanwhile, privately-offered LTC insurance hasn’t caught on, having been bought by only about 5 percent of potential customers.

CLASS will be deployed mainly through the workplace as an opt-out choice in benefit plans. Employers don’t have to participate, but the opt-out feature will be important for those that do. It means employees will be in the plan unless they make an active decision to drop out.

And, while CLASS is aimed mainly at the workplace, there also will be a public exchange where policies can be purchased by those working for companies that don’t participate, or for self-employed people.

In the workplace, CLASS participants will pay an insurance premium via payroll deduction. After a five-year vesting period, CLASS provides a LTC benefit of no less than $50 per day. Two additional, very significant features make CLASS different than most private coverage: There will be no lifetime or dollar cap on benefits, and insurers can’t turn away applicants due to a pre-existing condition.

Sebelius acknowledged in her recent speech that there is a solid actuarial case that CLASS can’t fund itself as required under the health reform law.

A key concern is what actuaries call adverse selection. That occurs when consumers are able to make enrollment decisions that hurt an insurance program’s viability. In other words, healthy, younger people might not enroll at all, and others might sign up when they suspect a need to make claims could be imminent.

Premium pricing is another key issue. A flat monthly premium was envisioned originally, but benefit payouts would rise with costs. A survey by the American Council of Life Insurers (ACLI) found broad support for a public option LTC program, but that support fell sharply when proposed monthly premiums were mentioned. Just five percent of potential enrollees told ACLI they’d enroll if the monthly premium were set at $110; CBO’s modeling assumed a $123 monthly premium.

Sebelius said HHS is weighing options for making CLASS financially sustainable. Options include indexing premiums to the Consumer Price Index so that they keep pace with rising benefit costs, and closing loopholes that could allow enrollees to drop out of the plan and return later without paying penalties. HHS also is studying ways to encourage employer participation.

Watch Howard Gleckman, resident fellow at The Urban Institute, discuss prospects for CLASS:

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Home Care check-ins to full 24/7 Care

At icertainti we check.  Like when you check your kids. Like when you see if you turn the stove off. Like when you are on vacation.

How did we come to this? How did we start checkin?  Well when you have boats….like kids…it is really really comforting to see that everything is okay. Hence, we started by checking boats, docks, moorings, bilge pumps, bilges, waterlines, rope, anchors.  basically anything that floats or has  even tangentally to do with floating.  See our webpage a http://www.cheaptrawlers.wordpress.com

How did we get into the home car business?  A friend mine was hospitalized an ended up in a nursing home.  What stood in the way  of  “her -and-her-freedom” was there as no one there check-in on her. So we started checking people.  And after a while we decided to start check in for everyone.

Icertinti  home of the 15$ check

Menu of Services:

The monthly check
The weekly check
The Pet check

Photo Service
The Phonecheck

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