Category Archives: Brain & Nervous System

Alzheimer’s support model could save states millions

And younger man's hand holds an elderly man's handBy Lisa Gillespie

As states eye strategies to control the costs of caring for Alzheimer’s patients, a New York model is drawing interest, and findings from a study of Minnesota’s effort to replicate it shows it could lead to significant savings and improved services.  Continue reading

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UCLA memory program offers ‘gym for your brain’

UCLA Memory 1

Vikki Helperin, 84, dances with her husband Sidney, 88, a retired anesthesiologist, at the Longevity Center at the University of California Los Angeles Medical Center. He was diagnosed with Alzheimer’s about four years ago, and the couple is hoping the memory sessions will slow the progression of the disease (Photo by Anna Gorman/KHN).

 

By Anna Gorman
KHN Staff Writer
MAR 15, 2014

This KHN story was produced in collaboration with wapo

Just as they had so many times during the past 60 years, Marianna and Albert Frankel stepped onto the dance floor. He took her hand in his, and smiling, waltzed her around the room.

“I remembered how it used to be and we could really do the waltz and he would whirl me around until I got dizzy,” said Marianna Frankel, 82, who is 10 years younger than her husband.

For just a few minutes as the music played, she didn’t think about her husband’s memory loss, the long days of silence or how much he had changed.

The Frankels and about 20 others had come to the University of California Los Angeles Medical Plaza on a breezy Tuesday afternoon to learn ways to boost the memory and help both patients and caregivers cope with what already had been lost.  Continue reading

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Can a dietary supplement treat a concussion? No

Illustration of the skull and brainA Consumer Update from the US Food and Drug Administration

Exploiting the public’s rising concern about concussions, some companies are offering untested, unproven and possibly dangerous products that claim to prevent, treat or cure concussions and other traumatic brain injuries (TBIs).

The Food and Drug Administration (FDA) is monitoring the marketplace and taking enforcement actions where appropriate, issuing warning letters to firms—the usual first step for dealing with claims that products labeled as dietary supplements are intended for use in the cure, mitigation, treatment, or prevention of disease.

The agency is also warning consumers to avoid purported dietary supplements marketed with claims to prevent, treat, or cure concussions and other TBIs because the claims are not backed with scientific evidence that the products are safe or effective for such purposes.

These products are sold on the Internet and at various retail outlets, and marketed to consumers using social media, including Facebook and Twitter.

One common claim: Using a particular dietary supplement promotes faster healing times after a concussion or other TBI.

Even if a particular supplement contains no harmful ingredients, that claim alone can be dangerous, says Gary Coody, FDA’s National Health Fraud Coordinator.

“We’re very concerned that false assurances of faster recovery will convince athletes of all ages, coaches and even parents that someone suffering from a concussion is ready to resume activities before they are really ready,” says Coody. “Also, watch for claims that these products can prevent or lessen the severity of concussions or TBIs.”

A concussion is a brain injury caused by a blow to the head, or by a violent shaking of the head and upper body. Concussions and other TBIs are serious medical conditions that require proper diagnosis, treatment, and monitoring by a health care professional.

The long-term impact of concussions on professional athletes and children who play contact sports has recently been the subject of highly publicized discussions.

A growing body of scientific evidence indicates that if concussion victims resume strenuous activities—such as football, soccer or hockey—too soon, they risk a greater chance of having a subsequent concussion.

Moreover, repeat concussions can have a cumulative effect on the brain, with devastating consequences that can include brain swelling, permanent brain damage, long-term disability and death.

“As amazing as the marketing claims here are, the science doesn’t support the use of any dietary supplements for the prevention of concussions or the reduction of post-concussion symptoms that would enable one to return to playing a sport faster,” says Daniel Fabricant, Ph.D., director of FDA’s Division of Dietary Supplement Programs.

The Claims

One of the first alarms raised about dietary supplements being promoted to treat TBI came from the U.S. Department of Defense.

“We first learned from the military about a product being marketed to treat TBI, obviously a concern with wounded veterans. We were taken aback that anyone would make a claim that a supplement could treat TBI, a hot-button issue,” says Jason Humbert, a senior regulatory manager with FDA’s Office of Regulatory Affairs. “That sparked our surveillance.”

FDA routinely monitors the marketplace. However, with more than 85,000 dietary supplements on the market and no product registration, products making false claims can slip through, at least for a time.

Typically, products promising relief from TBIs tout the benefits of ingredients such as turmeric and high levels of omega-3 fatty acids derived from fish oil. Turmeric is an Indian spice in the ginger family.

For Omega-3, FDA has recommended a maximum daily level of 3 grams per day from all sources due to possible problems with increased risk of bleeding, increases in cholesterol and problems with controlling blood sugar levels.

In its initial surveillance, FDA identified two companies selling multiple products claiming to prevent and treat concussions and other TBIs. One company claimed to have “the world’s first supplement formulated specifically to assist concussion recovery,” saying “it has the dynamic ability to minimize long-term effects and decrease recovery time.”

A National Football League player testified to its “proven results in my own recovery” from a concussion, and an unnamed “licensed trainer” said he had incorporated it into his “concussion management protocol.”

Similar claims were made by the other company, which was selling four products claiming to protect against and help heal TBIs. FDA sent letters in 2012 warning both companies that their products were not generally recognized as safe and effective for treating TBIs, that the products were misbranded (a legal term meaning, in this case, that the labeling of the products did not have adequate directions for use), and that unless various violations cited in the letters were promptly corrected, the violations could result in legal action taken without further notice, such as seizure or injunction.

Both companies changed their websites and labeling.

In December 2013, FDA issued a warning letter to Star Scientific, Inc., for marketing its product Anatabloc with claims to treat TBIs. FDA continues to monitor the marketplace for products with similar fraudulent claims, and will take appropriate regulatory action to protect the public health.

“As we continue to work on this problem, we can’t guarantee you won’t see a claim about TBIs. But we can promise you this: There is no dietary supplement that has been shown to prevent or treat them,” says Coody. “If someone tells you otherwise, walk away.”

This article appears on FDA’s Consumer Updates page, which features the latest on all FDA-regulated products.

Dec. 31, 2013

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Women’s health – Week 15: Depression and Anxiety

Office of Research on Women’s Health

Everyone feels sad sometimes, but these feelings usually pass within a couple of days. But when a woman has a depressive disorder, it can interfere with daily life and cause pain for her and those who care about her. The good news is that the vast majority of people, even those with the most severe depression, can get better with treatment.

Your health care provider may conduct a complete medical and psychological evaluation and will recommend an appropriate treatment. The most proven treatment methods are certain antidepressant medications and kinds of psychotherapy.

Women with depressive illnesses may not all experience the same symptoms. The severity, frequency, and duration of symptoms will vary depending on the person and her particular illness.

The most common symptoms of depression can include:

  • Persistent sad, anxious, or “empty” feelings.
  • Feelings of hopelessness and/or pessimism (belief that things will not get better).
  • Loss of interest in activities or hobbies once pleasurable, including sex.
  • Insomnia, waking up during the night, or excessive sleeping.
  • Fatigue and decreased energy.
  • Irritability, restlessness, or anxiety.
  • Feelings of guilt, worthlessness, and/or helplessness.
  • Thoughts of suicide, suicide attempts.
Antidepressant medication and pregnancy and breastfeeding
Women can be depressed while pregnant, especially if they have a history of depression. Women also can develop depression during pregnancy and especially after giving birth. The decisions about how to treat depression during pregnancy are complex and should be made in consultation with your health care provider before becoming pregnant to develop the best treatment plan.Antidepressants are excreted in breast milk, usually in very small amounts. Health care providers have not noticed many problems among infants nursing from mothers who are taking antidepressants, but research into possible side effects is ongoing. Whether you are planning to get pregnant, or are now pregnant or breastfeeding, consult your health care provider about the risks and benefits to you and your baby when deciding whether to take an antidepressant during pregnancy or while breastfeeding.

Anxiety disorders

People with anxiety disorders feel extremely fearful and unsure. Most people feel anxious about something for a short time now and again. For people with anxiety disorders, the anxiety is so frequent and intense that it seriously disrupts daily activity and quality of life.

Examples of anxiety disorders include:

  • Panic disorder.
  • Obsessive-compulsive disorder (OCD).
  • Post-traumatic stress disorder (PTSD) (see Week 38 for more information).
  • Social phobia (or social anxiety disorder).
  • Specific phobias.
  • Generalized anxiety disorder (GAD).

Each anxiety disorder has different symptoms, but all the symptoms cluster around excessive, irrational fear and dread. There is help for people with anxiety disorders. The first step is to talk to your health care provider about your symptoms. Your health care provider will examine you to make sure that another physical problem is not causing the symptoms. He or she may refer you to a mental health specialist.

Health care providers may prescribe medication to help relieve your anxiety disorder, but it is important to know that some of these medicines may take a few weeks to start working. The kinds of medicines that have been found to be helpful for anxiety disorders include antidepressants, anti-anxiety medicines, and beta blockers.Many people get relief from their anxiety with certain kinds of psychotherapy. These treatments can help people feel less anxious and fearful. You may be referred to a social worker, psychologist, psychiatric nurse, or psychiatrist for psychotherapy.

For more information: www.nimh.nih.gov
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“Multiple Sclerosis in the Pacific Northwest” – Science Cafe, Monday, Dec. 9

Illustration of the skull and brain“Multiple Sclerosis in the Pacific Northwest”
Monday, December 9, 2013 – 7 p.m. – Wilde Rover

Multiple sclerosis is a mysterious disease that is particularly common here in the Pacific Northwest. At the December Eastside Science Café, join the Swedish Neuroscience Institute’s James Bowen, M.D., to discover more about MS as a disease, trends and changes in its distribution around the world, and how it uniquely impacts our region.

Wilde Rover is located in downtown Kirkland at 111 Central Way.

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Women’s Health – Week 14: Dementia

From the Office of Research on Women’s Health

Dementia is the loss of thinking, memory, and reasoning skills to the extent that it seriously affects a person’s ability to carry out daily activities. Dementia is not a disease itself but a group of symptoms caused by certain diseases or conditions.

The most common form of dementia is Alzheimer’s disease. People with dementia lose their mental abilities at different rates and may eventually need total care.

Symptoms of dementia
  • Being unable to remember things.
  • Asking the same question or repeating the same story over and over.
  • Becoming lost in familiar places.
  • Being unable to follow directions.
  • Getting disoriented about time, people, and places.
  • Neglecting personal safety, hygiene, and nutrition.
  • Changing clarity in memory, language, and reasoning.
  • Changing moods and personality.
  • Losing the ability to perform daily activities like driving a car or handling money.

A person with dementia should be under the care of a health care provider. The health care provider might prescribe medications that may help maintain thinking, memory, and speaking skills, and that may lessen certain behavioral problems for a few months to a few years.

Family members and friends can help people in the early stages of dementia to continue their daily routines, physical activities, and social contacts. If you are concerned that you or someone you know has a serious memory problem, talk with your health care provider.

Note
There are now drugs to treat diseases such as Alzheimer’s disease. Although these drugs do not stop the disease or reverse existing brain damage, they may be able to lessen symptoms of the disease for a time. This may improve a person’s quality of life, ease the burden on caregivers, or delay admission to a nursing home.
 
For more information: www.nia.nih.gov
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Lack of eye contact in early infancy may be sign of autism, study

From the National Institutes of Health

Eye contact during early infancy may be a key to early identification of autism, according to a study funded by the National Institute of Mental Health (NIMH), part of the National Institutes of Health.

Published this week in the journal Nature, the study reveals the earliest sign of developing autism ever observed — a steady decline in attention to others’ eyes within the first two to six months of life.

“Autism isn’t usually diagnosed until after age 2, when delays in a child’s social behavior and language skills become apparent. This study shows that children exhibit clear signs of autism at a much younger age,” said Thomas R. Insel, M.D., director of NIMH. “The sooner we are able to identify early markers for autism, the more effective our treatment interventions can be.”

autism eye

Decline in eye fixation reveals signs of autism present already within the first 6 months of life. Data from a 6-month-old infant later diagnosed with autism are plotted in red.

Data from a typically developing 6-month-old are plotted in blue. The data show where the infants were looking while watching a video of a caregiver. Source: Warren Jones, Ph.D., Marcus Autism Center, Children’s Healthcare of Atlanta, and Emory University School of Medicine.

Typically developing children begin to focus on human faces within the first few hours of life, and they learn to pick up social cues by paying special attention to other people’s eyes.

Children with autism, however, do not exhibit this sort of interest in eye-looking. In fact, a lack of eye contact is one of the diagnostic features of the disorder.

To find out how this deficit in eye-looking emerges in children with autism, Warren Jones, Ph.D., and Ami Klin, Ph.D., of the Marcus Autism Center, Children’s Healthcare of Atlanta, and Emory University School of Medicine followed infants from birth to age 3.

The infants were divided into two groups, based on their risk for developing an autism spectrum disorder. Those in the high risk group had an older sibling already diagnosed with autism; those in the low risk group did not.

Jones and Klin used eye-tracking equipment to measure each child’s eye movements as they watched video scenes of a caregiver. The researchers calculated the percentage of time each child fixated on the caregiver’s eyes, mouth, and body, as well as the non-human spaces in the images. Children were tested at 10 different times between 2 and 24 months of age.

By age 3, some of the children — nearly all from the high risk group — had received a clinical diagnosis of an autism spectrum disorder. The researchers then reviewed the eye-tracking data to determine what factors differed between those children who received an autism diagnosis and those who did not.

“In infants later diagnosed with autism, we see a steady decline in how much they look at mom’s eyes,” said Jones. This drop in eye-looking began between two and six months and continued throughout the course of the study.

By 24 months, the children later diagnosed with autism focused on the caregiver’s eyes only about half as long as did their typically developing counterparts.

This decline in attention to others’ eyes was somewhat surprising to the researchers. In opposition to a long-standing theory in the field — that social behaviors are entirely absent in children with autism — these results suggest that social engagement skills are intact shortly after birth in children with autism. If clinicians can identify this sort of marker for autism in a young infant, interventions may be better able to keep the child’s social development on track.

“This insight, the preservation of some early eye-looking, is important,” explained Jones. “In the future, if we were able to use similar technologies to identify early signs of social disability, we could then consider interventions to build on that early eye-looking and help reduce some of the associated disabilities that often accompany autism.”

The next step for Jones and Klin is to translate this finding into a viable tool for use in the clinic. With support from the NIH Autism Centers of Excellence program, the research team has already started to extend this research by enrolling many more babies and their families into related long-term studies.

They also plan to examine additional markers for autism in infancy in order to give clinicians more tools for the early identification and treatment of autism.

Grant: R01MH083727

About the National Institute of Mental Health (NIMH): The mission of the NIMH is to transform the understanding and treatment of mental illnesses through basic and clinical research, paving the way for prevention, recovery, and care. For more information, visit http://www.nimh.nih.gov.

About the National Institutes of Health (NIH): NIH, the nation’s medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

NIH…Turning Discovery Into Health®

Reference

Jones W, Klin A. Attention to eyes is present but in decline in 2-6-month-old infants later diagnosed with autism. Nature, Nov. 6, 2013.

 

 

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Polio eradication within out reach – Infographic from the CDC

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Description of Infographic

The Time to Eradicate Polio is Now.

  • Worldwide in 2012, there were 223 polio cases in 3 endemic countries. Worldwide in 1988, there were 350,000 polio cases in 125 endemic countries.
  • Year and Polio Cases:
    1988: 350,000
    1989: 261,000
    1990: 233,000
    1991: 134,000
    1992: 137,000
    1993: 76,000
    1994: 73,000
    1995: 60,000
    1996: 33,000
    1997: 18,000
    1998: 10,000
    1999: 10,000
    2000: 4,000
    2001: 548
    2002: 1,922
    2003: 784
    2004: 1,258
    2005: 2,033
    2006: 2,022
    2007: 1,387
    2008: 1,732
    2009: 1,782
    2010: 1,409
    2011: 650
    2012: 223
  • Children still need to be vaccinated against polio. If we were to stop our current vaccination efforts, within a decade we would see a resurgence of polio that could paralyze more than 200,000 children worldwide every year.
  • Since 1988, polio vaccine has prevented more than 10 million cases of paralysis.
  • Since 1988, more than 500,000 deaths from polio have been prevented.
  • The economic benefits of polio eradication are $40-50 billion through the year 2035 – over 80% of these savings will be in developing countries.
  • The net benefit of other services such as vitamin A delivery alongside polio vaccination: up to $90 billion in additional savings and the prevention of up to 5.4 million child deaths.
  • Polio eradication is within our reach. It will save money. It will prevent disability. It will save lives.
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Take concussions out of play: Learn to prevent, recognize and respond to concussions

From the Centers for Disease Control and Prevention

BrainCDC estimates 173,285 sports- and recreation-related traumatic brain injuries (TBIs)including concussions, among children and adolescents are treated in U.S. emergency departments each year.

A bump, blow, or jolt to the head can cause a concussion, a type of TBI. Concussions can also occur from a blow to the body that causes the head to move rapidly back and forth. Even a “ding,” “getting your bell rung,” or what seems to be mild bump or blow to the head can be serious.

Concussions can occur in any sport or recreation activity. So, all coaches, parents, and athletes need to learn concussion signs and symptoms and what to do if a concussion occurs.

CDC’s “Heads Up: Concussion in High School” and “Heads Up: Concussion in Youth Sports” initiatives include materials and information to help coaches of all sports to help identify concussions and take immediate steps to respond when one is suspected.

Prevention and Preparation

Check with your league or school about concussion policies.Concussion policy statements can be developed to include the league or school’s commitment to safety, a brief description about concussion, and information on when athletes can safely return to play. Parents and athletes should sign the concussion policy statement before the first practice.

Insist that safety comes first. No one technique or safety equipment is 100 percent effective in preventing concussion, but there are things you can do to help minimize the risks for concussion and other injuries.

For example, to help prevent injuries:

  • Enforce no hits to the head or other types of dangerous play.
  • Practice safe playing techniques and encourage athletes to follow the rules of play.
  • Make sure players wear approved and properly-fitted protective equipment. Protective equipment should be well-maintained and be worn consistently and correctly.

Learn about concussion. Before the first practice, talk your athlete(s) and others about the dangers of concussion and potential long-term consequences of concussion. Review the signs and symptoms of concussion and keep the four-step action plan with you at games and practices.

More Information

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FDA moves to reduce use of long-acting opioid pain drugs

The US Food and Drug Administration has changed the labeling on long-acting opioids, such as OxyContin, in an effort to limit the use of these drugs to patients with severe refractory pain. Here’s is the Consumer Update from the FDA released today.

FDA Consumer Update

FDA logojpgConsumers and health care professionals will soon find updated labeling for extended-release and long-acting opioid pain relievers to help ensure their safe and appropriate use.

In addition to requiring new labeling on these prescription medications, the Food and Drug Administration (FDA) is also requiring manufacturers to study certain known serious risks when these drugs are used long-term.

“The new labeling requirements and other actions are intended to help prescribers and patients make better decisions about who benefits from the use of these medications. They also are meant to reduce problems associated with their use,” says Douglas Throckmorton, M.D., deputy director of regulatory programs in FDA’s Center for Drug Evaluation and Research.

“Altogether, the actions we’re now announcing are part of FDA’s efforts to make opioids as safe as possible for those who need them,” Throckmorton adds.

He noted that the actions come after careful analysis of new safety information, including reviews of medical literature, and consideration of input from patients, experts and many other interested parties.

How Labeling Will Change

Opioids work by changing the way the brain perceives pain. They are available by prescription as pills, liquids, and skin patches.

Extended-release and long-acting (ER/LA) forms pose a greater safety concern because—as their names suggest—they produce their effects for a longer period, and many contain higher doses compared with immediate release or opioid/non-opioid combination products.

They include, to name a few, long acting versions of opioids such as morphine, oxycodone, and fentanyl.

Currently, labeling on these ER/LA opioids indicate they are for “the relief of moderate to severe pain in patients requiring continuous, around-the-clock opioid treatment for an extended period of time.”

However, the updated indication for when to prescribe and take these medicines will, when finalized, emphasize that other, less potentially addictive, treatment options should be considered first.

FDA is requiring labeling that says the drugs are “indicated for the management of pain severe enough to require daily, around-the-clock, long-term opioid treatment and for which alternative treatment options are inadequate.”

The “limitations of use” portion of the new labeling retains language indicating that the drugs are not intended for use as an “as-needed” pain reliever.

Furthermore, the new labeling adds: “Because of the risks of addiction, abuse and misuse with opioids, even at recommended doses, and because of the greater risks of overdose and death with extended-release opioid formulations, reserve [Tradename] for use in patients for whom alternative treatment options (e.g., non-opioid analgesics or immediate-release opioids) are ineffective, not tolerated, or would be otherwise inadequate to provide sufficient management of pain.”

This new labeling language emphasizes that patients in pain should be assessed not only by their rating on a pain intensity scale, but also based on a more thoughtful determination that their pain—however it may be defined—is severe enough to require daily, around-the-clock, long-term opioid treatment, and for which alternative treatment options are inadequate.

This framework better enables prescribers to make decisions based on a patient’s individual needs, given the serious risks associated with ER/LA opioids, against a backdrop of alternatives such as immediate release (IR) opioids and non-opioid pain relievers.

It allows prescribers to make an assessment of pain relative to a patient’s ability to perform daily activities or enjoy a reasonable quality of life.

FDA-approved labeling of these pain relievers already describes the effects on newborns of exposure to these drugs while in the mother’s womb and warns against use by women during pregnancy and labor and while nursing.

The new labeling, however, will provide more detail and will elevate the risk of neonatal opioid withdrawal syndrome (NOWS) to the most prominent position in labeling—a boxed warning. Symptoms of NOWS may include poor feeding, rapid breathing, trembling, and excessive or high-pitched crying.

Postmarket Studies

Recognizing the need for more scientific data about the benefits and risks of ER/LA opioids when used over long periods, FDA also decided to require drug companies to conduct longer term studies and trials of ER/LA opioid pain relievers on the market.

The companies must evaluate long-term use, with the goal of assessing a variety of known serious risks, including misuse, abuse, addiction, overdose, and death, as well as the risks of developing increasing sensitivity to pain.

Education to Reduce Risk

Following implementation of the safety labeling changes, certain educational materials for patients and health care professionals will be modified to reflect the new labeling for the ER/LA opioid pain relievers.

As part of the new labeling changes, opioid manufacturers also must revise a paper handout patients receive with their prescription.

The ER/LA Opioid Analgesics Risk Evaluation and Mitigation Strategy (REMS) will also be updated after the labeling changes are finalized.

The ER/LA Opioid Analgesics REMS requires manufacturers to make available continuing education courses for health care professionals who prescribe these drugs.

The courses, from accredited sources, teach about risks and safe prescribing and safe use practices of these medications.

“By improving information about the risks of ER/LA opioid pain relievers and by clarifying the populations for whom the benefits outweigh the risks, we aim to improve the safe and appropriate use of these products,” says Throckmorton.

He adds: “This is not the first or last initiative, and we will continue supporting broader efforts to solve the serious public health problems associated with the misuse and abuse of opioids.”

This article appears on FDA’s Consumer Updates page, which features the latest on all FDA-regulated products.

Sept 10, 2013

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Health reform law leaves autism coverage decisions to the states

By Christine Vestal
Stateline Staff Writer

Autism advocates celebrated what they thought was a major victory when President Barack Obama signed the Affordable Care Act in 2010:  They expected the law to require all insurance companies to cover pricey, potentially lifelong treatments for those with the incurable condition.

But instead of creating a national standard for autism coverage, the administration bowed to political pressure from states and insurers and left it to states to define, within certain parameters, the “essential benefits” that insurance companies must provide.

Coverage requirements for autism treatments, such as behavioral counseling and speech and occupational therapy, already vary from state to state.  Far from smoothing out those differences, critics say the ACA will add a new layer of complexity.

The U.S. Department of Health and Human Services (HHS) says it will consider setting a national standard in 2016. Until then, states will decide what autism treatments insurance companies must cover.

08_09_autism_merged_maps

What is autism, how is it treated and at what cost?

Autism is a mental disorder affecting more than 2 million Americans and tens of millions of people worldwide. According to the U.S. Centers for Disease Control, one in every 88 children in the U.S has the condition, and the number is rising. Paying for treatment can be financially catastrophic to families.

Symptoms of autism first appear from birth to early childhood, and include mild to severe social, communication and behavioral challenges as well as repetitive behaviors. Treatments include counseling, speech and physical therapy and medications.

Advocates say applied behavior analysis (ABA), in which a therapist reinforces positive behaviors in the patient, is essential to helping children with autism reach their full potential.

ABA, developed in the 1960s, has become the most widely used autism treatment. But it requires hours of intensive, one-on-one therapy, and costs as much as $60,000 a year.

Depending on the severity of symptoms, a trained therapist using ABA may spend as many as 40 hours a week with a child. A new study by researchers at the University of Pennsylvania and the London School of Economics estimates the cost of treating a person with autism during his or her lifetime is $2.3 million. Autism costs Americans an estimated $126 billion annually, a number that has more than tripled since 2006.

Who opposes broad coverage of autism treatments?

ABA is endorsed by the American Medical Association, the American Academy of Pediatrics, and the U.S. Surgeon General. But insurance companies often object to paying for it because they say it is unproven and is largely educational, not medical.

Consumer advocates led by the Council for Affordable Health Insurance also argue that covering ABA is so costly it causes insurance premiums to rise, making basic health coverage unaffordable for millions of Americans.

What have states done to help ensure coverage of autism therapies?

Starting with Indiana in 2001, a total of 34 states and the District of Columbia have enacted autism insurance mandates, requiring carriers within their borders to provide coverage of ABA and other autism treatments in some or all of their policies.

States require insurers to cover nearly 2,300 categories of illness, treatments, and screenings.  Every state with an autism mandate requires insurers to cover ABA for state employees.

Beyond that, state laws vary widely. Some apply only to individual health policies, while others include small group and large corporate policies.

(No state mandates apply to the self-funded policies large employers typically offer, which is the type of coverage one-quarter of insured Americans have.)

Last year, the federal government began requiring coverage of ABA for the nation’s 8 million federal employees, retirees and their dependents.  Insurance coverage for members of the military also includes ABA treatments, with some restrictions.

Will existing state insurance mandates apply to policies sold on the state insurance exchanges?

Maybe.

The ACA says state insurance mandates in place before Dec. 31, 2011 may apply to policies offered on the exchanges.  If a state requires commercial carriers to cover ABA, that same requirement may be applied to policies sold on its exchange.

However, when the administration directed states to define “essential benefits,” every state either chose a “benchmark plan” (defined as the small business plan in the state with the most beneficiaries) or let the federal government choose a similar plan for them.

If a state’s benchmark plan includes a requirement to cover ABA and other autism treatments, then all the plans on its exchange must do the same.

But in 11 of the 34 states with autism mandates, the benchmark plan does not include autism coverage, according to an analysis by advocates Autism Speaks.

In those states, as well as the 16 states without autism mandates, state officials have the option of adding autism coverage as a required “supplemental” plan.

In Ohio, where the legislature is currently considering an autism bill, Gov. John Kasich, a Republican, mandated autism coverage by executive order in December 2012.

Alaska’s insurance chief, Bret Kolb, wrote to state lawmakers last month confirming that Alaska’s newly-minted autism mandate would apply to policies sold on the federally-run exchange.

How do state mental health parity laws affect autism patients?

According to the National Conference of State Legislatures, every state but Wyoming now has a mental health parity law on the books, requiring that when insurers cover mental illness and/or substance abuse they do so on an equal financial basis with physical illnesses.

A federal law – the Mental Health Parity and Addiction Act of 2008 – also requires equal treatment, but the Obama administration has yet tocomplete the federal rules that would enable states to enforce it.

Parity laws only require carriers to pay as much for mental health treatments as they pay for medical treatments, with the same co-pays, deductibles and coverage limitations.

The laws do not require carriers to cover specific treatments, such as ABA treatments. Still, state parity laws, combined with mandates, will maximize coverage for any given child.

What is “habilitation” and how does it affect autism coverage?

The federal government lists 10 categories of health care services states must include in their essential benefits. Two relate to autism: mental health services and habilitation, which is defined as therapies for children with developmental disabilities.

In accepting state benchmark plans last year, HHS told states they must spell out what services are covered under habilitation.

The way states define habilitation and how that plays out after 2014, when insurance companies begin processing claims, remains to be seen.

Stateline logo

Stateline is a nonpartisan, nonprofit news service of the Pew Center on the States that provides daily reporting and analysis on trends in state policy.

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Working up a sweat may reduce your risk of stroke

Road BikeFrom NIH Research Matters

New findings suggest that breaking a sweat during regular physical activity may lower your risk of having a stroke.

Stroke is the fourth leading cause of death in the United States. It occurs when blood vessels that supply the brain become ruptured or blocked. As a result, brain cells die from lack of oxygen and other nutrients.

Even when a stroke isn’t fatal, the damage to brain cells can lead to permanent speech, movement or memory problems.

It’s still not known why most strokes occur, but various risk factors have been identified, including high blood pressure, diabetes and inactivity.

To investigate the relationship between physical activity and stroke, a team led by Dr. Michelle N. McDonnell from the University of South Australia and Dr. Virginia Howard of the University of Alabama at Birmingham analyzed data from the Reasons for Geographic and Racial Differences in Stroke (REGARDS) study.

The dataset included information on more than 27,000 black and white participants, both men and women, from across the country. They were at least 45 years old at the time of recruitment and had no prior history of stroke.

The participants were asked how many times per week they exercised to the point of sweating. They were then contacted every 6 months to see if they had experienced a stroke or a mini-stroke known as a transient ischemic attack.

Participants were followed for an average of 5.7 years. Medical records confirmed their responses. The study was funded by NIH’s National Institute of Neurological Disorders and Stroke (NINDS). It appeared online on July 18, 2013, in the journal Stroke.

Participants who were inactive (exercising less than once a week) were 20% more likely to have a stroke or transient ischemic attack than those who exercised at least 4 times a week. After adjusting for traditional stroke risk factors (diabetes, hypertension, body mass index, alcohol use and smoking) exercise

was not a significant independent predictor of stroke risk, suggesting that the effect of physical activity is mediated through its association with obesity, hypertension and diabetes.

“Physical inactivity is a major modifiable risk factor for stroke,” Howard says. “This should be emphasized in routine physician checkups.”

“Exercise reduces blood pressure, weight and diabetes. If exercise was a pill, you’d be taking one pill to treat 4 or 5 different conditions,” McDonnell says.

One limitation of the study is that it included self-reported data on the frequency of exercise, but not on the duration of activity.

Official guidelines recommend that healthy adults (ages 18 to 64) get at least 2.5 hours of moderate aerobic physical activity each week. Activity should be done for at least 10 minutes at a time.

REGARDS will continue to assess stroke risk factors to look for long-term patterns in the study population. The findings will ultimately help researchers develop interventions aimed at preventing stroke and its consequences.

RELATED LINKS:

ReferenceStroke. 2013 Jul 18. [Epub ahead of print]. PMID: 23868271.

Funding: NIH’s National Institute of Neurological Disorders and Stroke (NINDS).

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Life and Death in Assisted Living, Part 1 — “The Emerald City”

“The Emerald City”

By A.C. THOMPSON, ProPublica and JONATHAN JONES in collaboration with 

A special to ProPublica

joan_boiceJoan Boice needed help. Lots of it. Her physician had tallied the damage: Alzheimer’s disease, high blood pressure, osteoporosis, pain from a compression fracture of the spine. For Joan, an 81-year-old former schoolteacher, simply getting from her couch to the bathroom required the aid of a walker or wheelchair.

The Alzheimer’s, of course, was the worst. The disease had gradually left Joan unable to dress, eat or bathe without assistance. It had destroyed much of the complex cerebral circuitry necessary for forming words. It was stealing her voice.

Joan’s family was forced to do the kind of hard reckoning that so many American families must do these days. It was clear that Joan could no longer live at home. Her husband, Myron, simply didn’t have the stamina to provide the constant care and supervision she needed. And moving in with any of their three children wasn’t an option.

These were the circumstances that eventually led the Boice family to Emeritus at Emerald Hills, a sprawling, three-story assisted living facility off Highway 49 in Auburn, Calif. The handsome 110-bed complex was painted in shades of deep green and cream, reflecting its location on the western fringe of the craggy, coniferous Sierra Nevada mountain range. It was owned by the Emeritus Corp., a Seattle-based chain that was on its way to becoming the nation’s largest assisted living company, with some 500 facilities stretching across 45 states.

Emeritus at Emerald Hills promised state-of-the art care for Joan’s advancing dementia. Specially trained members of the staff would create an individual plan for Joan based on her life history. They would monitor her health, engage her in an array of physically and mentally stimulating activities, and pass out her 11 prescription medications, which included morphine (for pain) and the anti-psychotic drug Seroquel (given in hopes of curbing some of the symptoms of her Alzheimer’s). She would live in the “memory care” unit, a space designed specifically to keep people with Alzheimer’s and other forms of dementia safe.

At Emerald Hills, the setting was more like an apartment complex than a traditional nursing home. It didn’t feel cold or clinical or sterile. Myron could move in as well, renting his own apartment on the other side of the building; after more than 50 years of marriage, the couple could remain together.

Sure, the place was expensive — the couple would be paying $7,125 per month — but it seemed ideal.

During a tour, a salesperson gave Myron and his two sons, Eric and Mark, a brochure. “Just because she’s confused at times,” the brochure reassured them, “doesn’t mean she has to lose her independence.”

Here are a few things the brochure didn’t mention:

Just months earlier, Emeritus supervisors had audited the operations of the memory care unit where Joan would be living. It had been found wanting in almost every important regard. In truth, those “specially trained” staffers hadn’t actually been trained to care for people with Alzheimer’s and other forms of dementia, a violation of California law.

The facility relied on a single nurse to track the health of its scores of residents, and the few licensed medical professionals who worked there tended not to last long. During the three years prior to Joan’s arrival, Emerald Hills had cycled through three nurses and was now employing its fourth. At least one of those nurses was alarmed by what she saw, telling top Emeritus executives — in writing — that Emerald Hills suffered from “a huge shortage of staff” and was mired in “total dysfunction.”

During some stretches, the facility went months without a full-time nurse on the payroll.

The paucity of workers led to neglect, according to a nurse who oversaw the facility before resigning in disgust. Calls for help went unanswered. Residents suffering from incontinence were left soaking in their own urine. One woman, addled by dementia, was allowed to urinate in the same spot in the hallway of the memory care wing over and over and over.

The brochure also made no mention of the company’s problems at its other facilities. State inspectors for years had cited Emeritus facilities across California, faulting them forfailing to employ enough staff members oradequately train them, as well as for other basic shortcomings.

Watch Life and Death in Assisted Living Preview on PBS. See more from FRONTLINE.

Emeritus officials have described any shortcomings as isolated, and insist that any problems that arise are promptly addressed. They cite the company’s growing popularity as evidence of consumer satisfaction. They say that 90 percent of people who take up residence in assisted living facilities across the country report being pleased with the experience.

Certainly, the Boice family, unaware of the true troubles at Emerald Hills, was set to be reassured.

“We were all impressed,” recalled Eric Boice, Joan’s son. “The first impression we had was very positive.”

And so on Sept. 12, 2008, Joan Boice moved into Room 101 at Emerald Hills. She would be sharing the room with another elderly woman. After a succession of tough years, it was a day of great optimism.

Measuring the dimensions of his mother’s new apartment, Eric Boice sought to recreate the feel of her bedroom back home. He arranged the furniture just as it had been. He hung her favorite pictures in the same spots on the wall. On her dresser, he set out her mirror and jewelry box and hairbrush.

Joan, 5-foot-2 and shrinking, had short snow-and-steel hair and wintry gray-blue eyes. Eric looked into those eyes that day at Emerald Hills. He thinks he might have seen a flicker of fear. Or maybe it was just confusion, his mom still uncertain where, exactly, she was.

A Reform Movement Winds Up on Wall Street

The Emeritus Corp., the assisted living corporation now entrusted with Joan’s life, sat atop an exploding industry.

Two decades earlier, Keren Brown Wilson had opened the nation’s first licensed assisted living facility in Canby, Ore., a small town outside of Portland. Wilson was inspired by tragedy: A massive stroke had paralyzed her mother at the age of 55, forcing her into a nursing home, where she was miserable, spending the bulk of her days confined to a hospital bed.

Wilson aimed to create an alternative to nursing homes. She envisioned comfortable, apartment building-style facilities that would allow sick and fragile seniors to maintain as much personal autonomy as possible.

“I wanted a place where people could lock the door,” Wilson explained. “I wanted a place where they could bring their belongings. I wanted a place where they could go to bed when they wanted to. I wanted a place where they could eat what they wanted.”

These “assisted living” facilities would offer housing, meals and care to people who could no longer live on their own but didn’t need intensive, around-the-clock medical attention. The people living in these places would be called “residents” — not patients.

Joan1cIt took Wilson nine years to persuade Oregon legislators to rewrite the state’s laws, a crucial step toward establishing this new type of facility. After that, states across the country began adopting the “Oregon model.”

But what began as a reform movement quickly morphed into a lucrative industry. One of the early entrants was Emeritus, which got into the assisted living business in 1993, opening a single facility in Renton, Wash. The company’s leader, Daniel Baty, had his eyes on something much grander: He was, he declared, aiming to create a nationwide chain of assisted living facilities.

Two years later, Baty took the corporation public, selling shares of Emeritus on the American Stock Exchange, and piling up the cash necessary to vastly enlarge the company’s footprint. Many of Emeritus’s competitors followed the same path.

The company’s rapid growth was, at least in part, a reflection of two significant developments. Americans were living longer, with the number of those in the 65-plus age bracket ballooning further every year. And this growing population of older Americans was willing to spend serious money, often willing to drain their bank accounts completely to preserve some semblance of independence and dignity — in short, something of their former lives.

As the assisted living business flourished, the federal government, which oversees nursing homes, left the regulation of the new industry to the states, which were often unprepared for this torrent of expansion and development. Many states didn’t develop comprehensive regulations for assisted living, choosing instead to simply tweak existing laws governing boarding homes.

In this suddenly booming, but haphazardly regulated industry, no company expanded more aggressively than Emeritus. By 2006, it was operating more than 200 facilities in 35 states. The corporation’s strategy included buying up smaller chains, many of them distressed and financially troubled, with plans to turn them around.

Wall Street liked the model. Market analysts touted the virtues of the company and its stock price floated skyward. One of the corporation’s appeals was that its revenues flowed largely from private bank accounts; unlike hospitals or nursing homes, Emeritus wasn’t reliant on payments from the government insurance programs Medicare or Medicaid, whose reimbursement rates can be capped. As the company noted in its 2006 annual report, nearly 90 percent of its revenues came from “private pay residents.”

In filings with the Securities and Exchange Commission and in conference calls with investors, Emeritus highlighted many things: occupancy rates; increasing revenue; a constant stream of complex real estate deals and acquisitions; the favorable demographic trends of an aging America.

“The target market for our services is generally persons 75 years and older who represent the fastest growing segments of the U.S. population,” Emeritus stated in a 2007 report filed with the SEC.

Today, the assisted living industry rivals the scale of the nursing home business, housing nearly three-quarters of a million people in more than 31,000 assisted living facilities, according to the U.S. Department of Health and Human Services.

Keren Brown Wilson, the early and earnest pioneer of assisted living, is happy that ailing seniors across the country now have the chance to spend their final years in assisted living facilities, rather than nursing homes. But in her view, the rise of assisted living corporations — with their pursuit of investment capital and their need to please shareholders — swept in “a whole new wave of people” more focused on “deals and mergers and acquisitions” than caring for the elderly.

She speaks from experience. After her modest start, Wilson went on to lead a company called Assisted Living Concepts, and took it onto the stock market. Wilson left the company in 2001, and it has encountered a raft of regulatory and financial problems over the last decade.

“I still have a lot of fervor,” said Wilson, who now runs a nonprofit foundation and teaches at Portland State University. “I believe passionately in what assisted living can do. And I’ve seen what it can do. But for some of the people, it’s just another job, or another business. It’s not a passion.”

“A Phenomenal Deal”

Joan1aJoan Boice, born Joan Elizabeth Wayne, grew up in Monmouth, Ill. It was a tiny farm belt community, not far from the Iowa border. Her father, a fixture in the local agriculture trade, owned a trio of riverfront grain elevators on the Mississippi and a fleet of barges. As a teenager, she spent her summers trudging through the fields, de-tasseling corn.

In 1952, accompanied by a friend, Joan packed up a car and followed the highway as far west as it would go. Then in her early 20s, she was propelled by little more than the notion that a different life awaited her in California. In a black-and-white snapshot taken shortly after she arrived, Joan is smiling, a luxuriant sweep of dark hair framing her pale face, gray waves curling in the background. It was the first time she’d seen the Pacific.

Joan had been a teacher for two years in Illinois, and she quickly found a job at an elementary school in Hayward, a suburb of San Francisco. In certain regards, her outlook presaged the progressive social movements that were to remake the country during the next two decades. She viewed education as a “great equalizing force” that could help to remake a society far too stratified by class, race and gender.

“She was just free-spirited and confident,” Eric, her son, said.

Joan met Myron Boice through a singles group at a Presbyterian church in Berkeley. On their wedding day, Joan flouted convention by showing up in a blue dress. The Boice children came along fairly quickly: Nancee, then Mark, then Eric.

Myron Boice was a dreamer. A chronic entrepreneur. He sold tools from a van. He made plans to open restaurants. He had one idea after another. Some worked; others didn’t.

Joan’s passion for education never dissipated. Even in her late 60s, she continued to work as a substitute teacher in public schools. After retirement, she began volunteering with a childhood literacy program.

But age eventually tightened its grip, and hints of a mental decline began surfacing around 2005. Eric grew worried when she couldn’t figure out how to turn on her computer twice in the span of a few months. Then she forgot to include a key ingredient while baking a batch of Christmas cookies. The cookies were inedible.

The elderly couple was still living in the San Francisco suburbs, when, in late 2006, a doctor diagnosed Joan with Alzheimer’s. As her mind deteriorated, Myron struggled to meet her needs. The situation was worsened by the fact that none of the children lived nearby. Mark was in Ohio. Nancee was about an hour away in Santa Cruz. And Eric and his wife, Kathleen, were roughly two hours away in the foothills of the Sierra.

“We offered my parents to come and live with us,” Eric recalled. But Myron said no. He and Joan wouldn’t move in with any of the kids. The family patriarch refused to become a burden.

A physician encouraged Joan and Myron to consider assisted living. It made sense. And so Myron sold their home in 2007 and the couple moved into a facility called The Palms, near Sacramento. The move put them approximately 40 minutes away from Eric and Kathleen.

“They were very attentive to every single thing she needed,” Kathleen Boice said of the staff at The Palms. “They actually re-taught her to eat with a fork and a knife.”

Joan1eBy 2008, however, Myron wanted a change. He wanted to be closer to his son and daughter-in-law and grandkids. He wanted different meals, a new environment. Myron began hunting for a new place to live, a search that led to Emeritus at Emerald Hills in Auburn.

Emeritus opened the Emerald Hills complex in 1998. It was, in many ways, a classic Emeritus facility, situated in a middle-class locale that was neither impoverished nor especially affluent. It was a sizable property, capable of housing more than 100 people.

In part because of its appetite for expansion, Emeritus was in the early stages of what proved to be a period of enormous stress. In 2007, the company had made its biggest acquisition to date, buying Summerville Senior Living Inc., a California-based chain with 81 facilities scattered across 13 states.

The purchase — which expanded Emeritus’s size by roughly one-third — helped the company make another major leap, bouncing from the low-profile American Stock Exchange into the big leagues of commerce, the New York Stock Exchange. News of the Summerville deal propelled the company’s stock to a new high. Emeritus was poised to become the nation’s No. 1 assisted living chain.

But the timing for this bold move turned out to be wretched. The real estate market was freezing up, and it would soon collapse, plunging the nation into an epochal recession. For Emeritus, the economic slowdown and then the housing crash posed direct challenges. Its services didn’t come cheap, so many people needed to sell their homes before they could afford to move into the company’s facilities. With the real estate market calcified, Emeritus’s customer pool shrank.

“Our stock price plummeted,” recalled Granger Cobb, Emeritus’s chief executive officer, who joined the company as part of the Summerville deal. The company’s occupancy rates had been trending skywards. Now they went flat.

At Emerald Hills, the economic slowdown that summer was making life tough for Melissa Gratiot, the lead sales agent.

“It was way harder to move residents in,” she remembered.

But there was some good news. She was close to a significant sale, this one to a couple. Gratiot worked the pitch. She talked with the family. She emailed. She gave them a tour of the facility’s memory care unit, called The Emerald City. She told the family she’d received approval from higher ups to offer the family “a phenomenal deal.”

Gratiot closed the sale. On Aug. 29, 2008, Myron and Eric signed the contract, and the family opened its wallet: A $2,500 initial move-in fee; $2,772 for Joan’s first two weeks in Room 101; another $1,660 for Myron.

There had been one oversight, though. No one at Emeritus with any medical training had ever even met Joan, much less determined whether Emerald Hills could safely care for her.

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Life and Death in Assisted Living, Part 2 — “They’re Not Treating Mom Well”

By A.C. THOMPSON, ProPublica and JONATHAN JONES in collaboration with 

A special to ProPublica

Joan2aWhen the ambulance crew arrived, about 8:20 p.m., Joan Boice was in the TV lounge, face-down on the carpet. Her head had struck the floor with some velocity; bruises were forming on her forehead and both cheeks. It appeared she’d lost her balance and fallen out of a chair.

But no one at the assisted living facility could say precisely how the accident had occurred. No one knew how long Joan had been splayed out on the floor. She had defecated and urinated on herself.

Worried that Joan might have injured her spine, the emergency medical personnel gently rolled her over and placed her on a back board. They pumped oxygen into her nostrils.

It was Sept. 22, 2008 — just 10 days after Joan had first moved into Emerald Hills.

No Emeritus employees accompanied Joan to the hospital. And even though Joan’s husband, Myron, was living in the facility, the Emeritus workers didn’t immediately alert him that Joan had fallen and hurt herself. Joan, confused, injured, and nearly mute, ended up in the local hospital by herself, surrounded by strangers.

It was supposed to have been a festive night for Joan’s son Eric and his wife, Kathleen, who lived nearby. They were throwing a birthday party for their daughter, then in elementary school. The celebration was interrupted when a doctor called from the hospital with news of Joan’s fall. As Kathleen recalled it, the physician was somewhat baffled — he didn’t understand what Joan was doing in the emergency room without a family member, and he was having trouble deducing the extent of her injuries because she couldn’t communicate.

California law requires assisted living companies to conduct a “pre-admission appraisal” of prospective residents, to ensure they are appropriate candidates for assisted living.

But Emerald Hills took Joan in without performing an appraisal. It wasn’t for lack of time. The Boices had signed the contract to live at Emerald Hills more than two weeks before Joan moved in.

Joan, then, had taken up residence in the memory care unit at Emerald Hills. The unit — referred to as a “neighborhood” by the company — is a collection of abouta dozen small apartments on either side of a central hallway. At each end of the hallway are heavy doors equipped with alarms, which sound when anyone enters or leaves. The alarm system is meant to prevent residents from simply walking off.

On the day Joan moved into Room 101 in the unit, a company nurse named Margaret “Peggy” Stevenson briefly looked her over. The nurse realized that Joan needed to be monitored closely to keep her from falling — she wrote it down in her cursory assessment — but facility records show she didn’t craft any kind of detailed plan for her care and supervision.

Stevenson, asked years later about Joan, said she could recall nothing about her or her stay at Emerald Hills.

Kathleen had immediate suspicions about Joan’s fall. The family, she said, had warned the facility not to leave Joan sitting in a chair without supervision because she was liable to try to stand up, lose her balance, and topple to the floor. Joan had fallen several times during an earlier stay in an assisted living facility near Sacramento, but the staff had developed a specific plan to address the issue.

Despite the warning, Kathleen said that when she visited Emerald Hills during Joan’s first days there she often found her mother-in-law sitting in a chair alone.

The recent track record at Emerald Hills featured a host of falls similar to Joan’s, and ambulances were often called to take the injured off to the hospital. Falls are a particular hazard for the elderly, and assisted living facilities like Emerald Hills are required to report them to state regulators.

Internal company records documented 112 falls at Emerald Hills in 2008. Some residents fell repeatedly.

Consider the case of one Emerald Hills resident, 83-year-old Dorothy “Dottie” Bullock.

On April 5, 2008, an Emeritus employee discovered Bullock “on the floor in a semi-seated position” in the memory care unit, according to a state report. She “was unable to tell” the worker what had happened to her. The incident was described as a fall in state records. Emerald Hills sent her to the hospital.

Joan2bOn April 7, Bullock, back at Emerald Hills, fell again, according to the handwritten log of her personal attendant, who was hired by Bullock’s husband to give her extra help.

On April 8, Bullock, complaining of pain, was hauled by ambulance back to the hospital. Doctors concluded that she’d fractured her pelvis, but soon returned her to Emerald Hills. She fell again on April 12.

Bullock would fall again months later, for the final time.

Emeritus records show Bullock tumbled in front of her apartment and was found on the carpet with her aluminum walker beneath her. Blood spilled from her nose and a “bump” developed on her forehead, according to the company documents. The impact broke a vertebra in Bullock’s neck and crushed her nasal bones and sinus structures, hospital records show. A CT scan revealed possible fractures of both eye-sockets and the base of the skull.

Dottie Bullock died in the emergency room.

While Emeritus recorded the fatality in its internal logs, the company did not report her death to state regulators, a violation of California law. The state requires assisted living facilities to file reports on all deaths, even those believed to be from natural causes, so that it can look into suspicious or troubling incidents.

Emeritus said it lacked information about Bullock’s death and thus could not say why it had occurred.

Bullock’s personal attendant, Julie Covich, says Bullock was not supervised properly.

“I think there was neglect,” said Covich, who usually visited Emerald Hills once or twice a week to help out Bullock. “I would go in there and never see a caregiver.”

“It was hard to find anyone that was running the place,” she said. “It was crazy.”

“Heads on the Beds”

In early 2008, the year Joan Boice entered Emerald Hills, Emeritus rolled out a new business campaign. The company dubbed it the “No Barriers to Sales” effort.

The concept was straightforward: Move as many people as possible into Emeritus facilities. Wall Street was looking closely at the company’s quarterly occupancy numbers and a few percentage points could propel the stock price upward or send it tumbling down.

With the housing market foundering, Emeritus needed to step up its sales efforts.

In case there was any confusion about just how seriously the company took this new campaign, a company vice president sent a blast email to facility directors across California. In the body of the email, the vice president got right to it:“SALES and your commitment to sales is your highest priority right now.” Facility directors, the message concluded, would be “held responsible for census and occupancy growth.”

Emeritus employees across the country realized they were entering a new era.

“There was a different sense of urgency. The tone was different,” said a former Emeritus manager who ran a facility at the time. “The message from above was put as many people as possible in the beds and make as much money as possible. That’s what they said. Verbatim. Honestly.”

According to Lisa Paglia, a regional executive in California at the time, Budgie Amparo, the company’s top official for quality control, was openly critical when a Northern California facility declined to admit someone who did not have a doctor’s evaluation.

Such evaluations, which are designed to keep out seniors with problems that assisted living facilities aren’t equipped to handle, are required under a California law known as Title 22.

But on a conference call with roughly half a dozen California managers, Paglia said, Amparo declared that the Northern California facility should have admitted the resident.

Joan2d“Our priority,” Amparo declared, according to Paglia, “is to get the heads on the beds.”

The issue arose again in October 2008 during a training session for approximately 25 facility directors and salespeople held at an Emeritus property in Tracy, Calif. During the seminar, a company vice president reiterated Amparo’s instruction to disregard California law, according to court records and interviews.

The mandate prompted something of a staff revolt.

At least one facility director spoke out at the meeting: His license to operate the facility was at stake, he said.

An employee who worked at the Tracy facility eventually alerted California regulators. The state dispatched an investigator, and state records show that the investigator met with employees who confirmed that a company official had approved the practice of admitting someone without a doctor’s report. The investigator reviewed a random sample of seven resident files, finding that two people had been moved in illegally, documents show.

Amparo, a nurse whose full title is executive vice president of quality and risk management, denies directing employees to violate the regulation. In a written statement, Emeritus said, “Neither Budgie Amparo nor any of our other officers issued a directive to violate Title 22 or any other law. Emeritus does not condone allowing residents to move in without the proper documents.”

Emeritus eventually fired Paglia, and lawyers for the company have since portrayed her as a poor worker who failed to do her job competently. Along with two other former Emeritus employees, Paglia sued the company alleging wrongful termination, and wound up settling on secret terms.

For assisted living chains such as Emeritus, there is a powerful business incentive to boost occupancy rates and to take in sicker residents, who can be charged more.

Emeritus, for its part, rejects any suggestion that a quest for profits has tainted its admission practices. But in interviews, former Emeritus executives described a corporate culture that often emphasized cash flow above all else. The accounts of the executives, who spoke independently but anonymously, were strikingly consistent.

“It was completely focused on numbers and not human lives,” said one executive, who worked for Emeritus for more than three years and oversaw dozens of facilities in Eastern states.

The company’s emphasis on sales and occupancy rates, the executive said, transformed the workforce into “a group of people who were grasping at every single lever they could pull to drive profitability.”

Emeritus operates a sophisticated, data-driven sales machine. There are occupancy goals for each facility, as well as yearly company-wide goals. The company tracks dozens of data points — including every move-in and move-out of residents — in a vast database. It posts a monthly snapshot of each facility’s sales statistics on an internal website, allowing employees to see which strategies are most successful.

Sales specialists are instructed on how to use psychology to persuade potential customers to sign on. One suggestion: Give the customer “a sense of control and choice by offering two possible options.” A 2009 Emeritus sales manual, which runs 181 pages, encourages sales people to generate publicity by hosting seminars on Alzheimer’s or organizing charity efforts in the event of a natural disaster like a “flood or earthquake.”

Emeritus motivates its workforce with a broad range of financial incentives. There are bonuses for hitting monthly occupancy goals. Bonuses for hitting yearly occupancy goals. Bonuses for boosting overall earnings. And the money doesn’t just go to sales people: The company hands out checks to maintenance workers, nurses, facility directors and other workers.

Nurses play a key role in assisted living, providing much of the hands-on care. But nurses at Emeritus facilities are also expected to be deeply involved in increasing revenue by making sales.

During more than a year of reporting, ProPublica and PBS Frontline spoke to 10 facility directors who said nurses were required to participate in weekly conference calls focusing on little but economics. Those accounts are backed by an internal Emeritus document that lays out the agenda for the weekly calls and that shows an overarching concentration on finances.

Doris Marshall was at the forefront of Emeritus’s efforts to have nurses play the dual roles of caregivers and salespeople. After receiving her nursing license in 1984, Marshall had spent many years tending to patients in the emergency department of a Southern California hospital, and she’d later gone on to help run a nursing school.

But Marshall was intrigued by the assisted living business and in March 2008 she signed on to supervise 10 Emeritus properties scattered across Northern California. Amparo, the company’s head nurse, convinced Marshall to take the job, telling her nurses “had a voice” at Emeritus.

Marshall was to oversee the well-being of roughly 800 elderly people. But her job description went well beyond that: She was to help with “marketing” and “attaining financial goals.” Her job, in the end, actually involved very little nursing.

Instead, she said, she was drawn into Emeritus’s evolving strategies aimed at upping its revenues. The company planned to bring in more seniors with Alzheimer’s and dementia because they could be charged more, she said. Her boss gave her a digital tracking tool showing how much more money Emeritus could make by admitting sicker, frailer residents.

By the fall of 2010 Marshall was worn out and disillusioned. She quit.

Emeritus’s extraordinary drive to put heads in beds — perhaps routine in, say, the hotel industry — has distorted the admissions process at some facilities, records and interviews show. Since 2007, state investigators have cited the company’s facilities more than 30 timesfor housing people who should have been prohibited from dwelling in assisted living facilities.

A 2010 episode at an Emeritus facility in Napa highlighted the perils of improperly admitting people. The facility rented a room to a 57-year-old woman with an eating disorder, depression, bipolar disorder and a history of suicide attempts. The woman, who was distraught over the death of her husband, taped a note to her door saying she wasn’t to be disturbed and committed suicide, overdosing on an amalgam of prescription painkillers.

The state’s investigation into the death was scathing: the woman should never have been allowed to move in; the staff had missed or ignored bulimic episodes and her obvious weight loss; no plan of care was ever developed or implemented despite the resident’s profound psychological problems.

Emeritus, asked to respond to the state’s investigation, said only that the woman had overdosed on drugs she had brought into the facility on her own, and that as a result they could not be faulted in her death.

“She Barely Even Talked to Us”

In the aftermath of her fall in September 2008, Joan returned to Emerald Hills. But the staff, inexperienced and often exhausted, worried about her.

“She couldn’t walk, she couldn’t feed herself, she barely even talked to us, and her health wasn’t that good,” recalled Jenny Hitt, a former medication technician at Emerald Hills.

But if concern was abundant at Emerald Hills, expertise was in short supply.

Alicia Parga ran Joan’s memory care unit. On some weekends, she managed the entire building — not only the wing of residents with dementia, but the rest of the three-story assisted living facility, one that could hold a total of more than 100 residents.

After Parga started on the job, it took Emeritus roughly 18 months to give her any training on Alzheimer’s and dementia. The state regulations were hardly substantial: Someone such as Parga was obligated to get six hours of training during her first four weeks on the job. But even that requirement wasn’t met.

Emeritus has insisted that Emerald Hills had properly trained personnel to care for Joan and others, and they described Parga as a woman deeply invested in tending to the residents.

But Parga, who had barely earned a high school degree, wasn’t even familiar with the seven stages of dementia. Though she was responsible for the well-being of 15 or more seriously impaired people, as well as the supervision of employees, Parga was paid less than $30,000 per year.

Catherine Hawes, a health care researcher at Texas A&M University, conducted the first national study of assisted living facilities. In her view, training is absolutely crucial. A well-educated employee can “interpret non-verbal cues” from people like Joan, intercept seniors before they wander away from the building, or keep residents from eating or drinking poisonous substances.

“You can do great care,” she said. “You just — you’ve got to know how.”

Other than the Emeritus employees working in the memory care unit at Emerald Hills, only one person saw Joan enough to know what kind of daily care she was getting: Her husband, Myron.

He was worried. And he did his best to sum up his concerns to his son Eric:

“They’re not treating Mom well.”

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Life and Death in Assisted Living, Part 3 – “A Sinking Ship”

By A.C. THOMPSON, ProPublica and JONATHAN JONES in collaboration with 

A special to ProPublica

Joan3eOn Sept. 30, 2008, an employee at the Emerald Hills assisted living facility in Auburn, Calif., made an entry in a company computer log:“pressure ulcer/wound.”

Joan, who had spent just 19 days in the facility, had developed the wound on her foot. The fall eight days earlier had hospitalized her and left her with bruises and an abrasion on her right temple. This, though, could be much, much worse.

Pressure ulcers — also known as bed sores — can form when a person loses the ability to move about freely. Lying in bed or sitting in a chair for long stretches of time diminishes the blood flow to the skin, causing it to break down and die. A hole grows. If bacteria creep into the wound, the bugs can devour flesh or invade the blood and bones. Pressure ulcers can turn fatal, particularly in older people.

Because of the lethal potential of pressure ulcers, the federal government monitors them closely in the nursing home business. In the eyes of experts, the sores are often an indicator of poor care. Attentive caregivers can prevent many pressure sores by making sure that people don’t spend too much time in the same position.

“We know that most bed sores are avoidable,” said Kathryn Locatell, a forensic geriatrician who investigates allegations of elder abuse for California Department of Justice. “That is the consensus of experts in the field.”

Physicians grade the ulcers on a scale ranging from Stage 1 to Stage 4, with Stage 4 being the most serious. In California, assisted living facilities are allowed to house people with Stage 1 and 2 sores, but only if the resident receives medical treatment from a “skilled professional.” The law bars facilities from renting rooms to people with more severe pressure ulcers.

The Emerald Hills worker who wrote up Joan’s pressure ulcer on Sept. 30 understood its significance. The employee noted that a “skilled professional”would be treating the wound.

Emerald Hills was supposed to contact Joan’s doctor when she developed the ulcer. But nobody from Emerald Hills called a doctor. No nurse came to salve Joan’s wound. And nobody told Joan’s relatives — her husband, Myron, who lived in the same facility, or her son who lived nearby — about the development.

Joan’s short, painful stay at Emerald Hills seemed to be accelerating her decline.

Things had been different at the first assisted living facility Joan had lived at, a place called The Palms near Sacramento. There she’d enjoyed a constant stream of activities. “She was doing things every day,” remembered Eric Boice, her son. There were storytelling sessions, games of wheelchair bowling, arts and crafts. Once Joan had smeared finger paint on her palm and pressed it to a piece of paper, creating a keepsake for her son.

Adequate staff at The Palms was central to the family’s satisfaction with Joan’s stay. Promises that staff would keep Joan active and engaged — central ambitions in dementia care — were kept. And the perils of prolonged inactivity, like mental decline and dangerous sores, were avoided.

By comparison, the unit at Emerald Hills where Joan lived seemed to the family to be poorly staffed and thus static. Staff rarely turned up to organize activities. What few staffers were available managed only to bring Joan down to the TV lounge, where she sat, unengaged. Myron and other family members visited frequently, but otherwise she was marooned.

Joan3aMelissa Gratiot, the Emeritus salesperson who had convinced the Boices to come to Emerald Hills, had given the family a brochure during her sales pitch. The facility’s “entire staff” would strive to produce “meaningful interactions and activities” for Joan.

But Gratiot had come to doubt her own marketing pitch, and a lack of staff was part of what colored her regret. She saw few activities going on in the memory care unit and rarely saw her colleagues working to protect Joan from long stays in her wheelchair or bed.

“When I would see Joan,” Gratiot said, “she’d be in the TV room, sitting in a chair.”

“State Visits, Fines, Resident Upheaval”

Just months before Joan arrived at Emerald Hills, Mary Kasuba, a nurse there, told senior management at Emeritus that things needed to change. She took her concerns directly to the top bosses, the executives in Seattle who ran the assisted living empire from a gleaming glass office cube on the Puget Sound.

In late 2007, Kasuba wrote a five-page letter and sent it via certified mail to the 10 highest-ranking figures in the company. In the letter, Kasuba warned of “total dysfunction” at Emerald Hills because of “the way the corporation mandates this building to be run.”

She pleaded for the bare essentials any assisted living facility needed to operate safely: a key one being an adequate workforce.

Alarms bells had been ringing in Kasuba’s head nonstop during her short tenure at Emerald Hills. The first was triggered when she had to cover the overnight shift with another employee. There were roughly 80 seniors living at Emerald Hills at the time.

“There were residents that could not necessarily get up and walk to the bathroom on their own,” Kasuba said in an interview.

Some of them, she immediately noticed, needed the help of two people — all the workers she had on duty — to get out of bed and shuffle to the toilet. If any sort of emergency had forced Kasuba to evacuate the building, it would have been slow-motion chaos.

Typically, Kasuba would grab a nap as dawn broke and be back at Emerald Hills by 10 a.m. The scene wasn’t much better on the day shift. She came to feel the company was exploiting its customers.

In her letter to Emeritus officials, she wrote, “Since I came to work with Emerald Hills, there has not been enough staff to cover any part of the day-to-day staffing needs.”

“The med room is a sinking ship with no ballast compartments to keep it afloat.”
MARY KASUBA, FORMER NURSE AT EMERALD HILLS, IN A LETTER TO EMERITUS EXECUTIVES

Kasuba’s biggest worry was the medication room. The medication technicians, called “med techs” in the industry, were responsible for passing out a mountain of pills each shift. Med techs aren’t nurses or even certified nursing assistants. Typically, they have no formal medical education. At Emerald Hills at that time they made approximately $8 to $10 an hour.

One medication technician, Kasuba wrote, “was placed in the med room with maybe a day’s training. She worked in the med room until her stress level became such that she stepped down.”

Recordkeeping throughout the facility was haphazard at best. Documents were missing or misfiled. One resident’s chart, according to the nurse, contained a doctor’s evaluation that had been filled out and signed by a family member — not an MD.

Joan3bAgain, Kasuba didn’t mince words, calling the medication operation “a sinking ship with no ballast compartments to keep it afloat.”

Kasuba ended her letter to the company’s executives with an ultimatum: Let her make major changes at Emerald Hills or she was out.

“Corporate can hire someone else and the cycle of dysfunction will begin again,”she wrote. “State visits, fines, resident upheaval, staff turnover.”

Emeritus replaced Kasuba. The company says it dealt with the concerns she raised about Emerald Hills. Many of those who remained at Emerald Hills tell a different story.

A couple of years later, Susan Rotella got a taste of the same problems, but on a much grander scale. In November 2009, Emeritus tapped Rotella, who had made her career in assisted living, to manage the company’s California division.

It was a big job. Emeritus agreed to pay her $210,000 per year, plus bonuses and stock options. She’d be part of a three-person executive team overseeing 45 facilities.

Rotella testified under oath that as she traveled around the state meeting Emeritus employees she heard one thing over and over: The facilities needed more staff.

The division, however, wasn’t posting the kind of financial numbers Emeritus wanted to see.

“All eyes were on California because we were keeping the stock price down,” she said. “As California went, so went Emeritus.”

“He turned to me and with a big smile on his face said, ‘Aah, so you’re the one who’s going to run the shithole.’”
SUSAN ROTELLA, FORMER EMERITUS VICE PRESIDENT IN CHARGE OF OPERATIONS IN CALIFORNIA, TESTIFYING TO WHAT COMPANY FOUNDER DANIEL BATY SAID TO HER AFTER SHE TOOK THE JOB.

One man didn’t bother to sugarcoat his feelings about the California division, Rotella said. As she tells it, shortly after signing on with Emeritus, she was welcomed aboard by company founder Daniel Baty.

Baty, she recalled, said, “Ah, so you’re the one who is going to run the shithole.”

He denies making the statement.

Rotella’s superiors directed her to slash labor costs by 10 percent across the board, she said. Facility directors “were constantly being told to cut labor expense, cut labor, cut labor, cut labor,” she added.

Emeritus said Rotella’s claims were false. “Unfortunately, it is another accusation without any documentation, evidence, or even another person present to verify the conversation. Emeritus would not enact across-the-board labor cuts at the expense of our residents’ care needs,” the company said in a statement.

The assisted living industry is overseen in a very different manner from its closest cousin, the nursing home business. Nursing homes are governed by a complex grid of federal and state regulations.

The U.S. Centers for Medicare & Medicaid Services collect a vast array of data from nursing homes — drug prescribing patterns, staffing levels, patients who’ve had falls, etc. — and make much of it available to the public through a website called Nursing Home Compare.

And an array of information on fines and inspections can be found on the easier-to-use website Nursing Home Inspect. States set minimum staffing requirements for nursing homes.

The early advocates of the assisted living movement chafed at many of these regulatory dictates. They wanted flexibility, the ability to innovate. They wanted to create spaces that were more home, less hospital. Today, two decades on, there are still no federal standards and leaders of this growing business sector continue to push back against anything more than modest government oversight.

Their success at staving off uniform regulation from state to state means Emeritus’s hundreds of facilities operate under wildly varying regulations and offer different services. From Miami to Dallas to Des Moines, there isn’t even an agreed-upon definition of assisted living.

“We say in this business if you’ve seen one assisted living community, you’ve seen one assisted living community,” said Rick Grimes, president of the Assisted Living Federation of America, a trade group.

The dearth of hard and fast rules gives executives and managers at assisted living companies wide latitude in deciding how many workers should be clocking in on a given shift. Many states require assisted living facilities to keep “sufficient” staff on duty at all times, but don’t define what that means.

The increasing frailty of the population in assisted living makes adequate staffing critical to quality of care, said Catherine Hawes, a Texas A&M professor and an expert on the assisted living industry. According to a 2010 national survey, more than 50 percent of assisted living residents need help dressing and bathing and 42 percent have some form of dementia.

Publicly traded companies like Emeritus are under substantial pressure to hit their financial goals — each quarterly performance is scrutinized and failing to meet expectations can damage the company’s value.

We say in this business if you’ve seen one assisted living community, you’ve seen one assisted living community.”
RICK GRIMES, PRESIDENT OF THE ASSISTED LIVING FEDERATION OF AMERICA.

To hit their goals, then, Emeritus tightly manages its workforce. “Tightly manages” often means reducing staff, slashing wages and curtailing benefits.

Joan3cChief executive Granger Cobb addressed the issue with investors and market analysts as recently as last year.

“We’re feeling good about the cost structure,” he said. “I think we’ve got a very good control on the — our biggest expense, which is labor. We’re managing it very closely.”

Emeritus had just cut its overhead by 8.2 percent, largely by cutting pay and benefits.

The company asserts that all of its facilities are adequately staffed, and that it would never compromise care by irresponsibly reducing staff.

One former Emeritus executive, who supervised nurses in multiple states for a period of years, thought the company kept its staffing levels dangerously low as a matter of policy.

“Is that unique to Emeritus? I would say it’s ubiquitous to the entire assisted living industry,” said the executive. “We need to take a huge step back and look at this whole industry.”

Lack of proper supervision at Emeritus facilities appears to have played a central role in several cases in which residents suffered avoidable and sometimes catastrophic harm.

  • On Christmas Day 2004, Mabel Austin froze to death in front of an Emeritus facility in Texas. The lone staffer on duty in the memory care unit didn’t realize that Austin, 91 years old and suffering from Alzheimer’s, had walked out of the building. Emeritus would not comment on this case.
  • It took about 12 hours for staffers at an Emeritus facility in Iowa to call an ambulance after 84-year-old Paulyne Stevens took a fall in her bedroom. An employee at the facility put Stevens back in her bed, but did not contact any medical professionals. When doctors finally examined Stevens they found she had six broken ribs and a deflated lung. Investigators found workers at the facility didn’t have legally required training. Emeritus admits the incident was mishandled, and has settled a lawsuit with the family.
  • June Hassler, 86, died in a locked bathroom at an Emeritus facility in Pennsylvania. It took employees 36 hours to notice. The director of the facility said the staff thought Hassler was visiting family. Two years earlier, 84-year-old Eleanor Hodges died in the same facility after being attacked by a male resident with a history of aggressive behavior. The state found that Emeritus had failed “to provide proper supervision” of the man. Emeritus told the state it would act to correct the problems that led to Hodges’s death. The families of both women have sued Emeritus.

Emeritus portrays incidents such as these as isolated events and says state authorities are citing the company less and less frequently for violations. “If you look at our regulatory history versus others in the industry we probably fare pretty well,” Cobb said.

There are no national statistics on regulatory violations in assisted living. But ProPublica and Frontline obtained and analyzed data from California, the state with the most assisted living facilities.

The data – compiled by the state ombudsman program, which investigates allegations of abuse and misconduct – shows that between 2010 and 2012, Emeritus had more verified complaints per bed than any of its major competitors.

In two of those years, the company had more substantiated neglect complaints than the other big chains, again on a per bed basis.

Some companies have devised their own systems for calculating how many people should be on duty on any given shift. Though Emeritus collects and parses a vast array of data, much of it focused on sales and profitability, it has chosen not to create a staffing ratio or formula.

This surprised Rotella, the California executive. She had previously worked at another major chain called Sunrise Senior Living, which had used a formula based on the health needs of each resident.

Rotella said she brought the issue up at a meeting with the man in charge of quality control for the entire Emeritus empire, a nurse named Budgie Amparo.

“He stood up and he was quite agitated. And he said, ‘We will never have staffing ratios at Emeritus,’” Rotella recalled. Amparo said that if somebody got hurt or killed in an Emeritus facility, a written ratio or formula could be a liability, according to Rotella. If it turned out the company wasn’t following its own staffing protocol, the plaintiff lawyers would jump all over them.

“I don’t remember that,” Amparo said. In a statement, Emeritus said “we do not have a staffing formula” because such a formula “would not serve our residents’ best interests.”

Emeritus ousted Rotella shortly after her conversation with Amparo. It was March 2010 and she had been on the job for three months. Today she works as a consultant to assisted living firms and is suing Emeritus for wrongful termination. Company leaders, Rotella said, viewed her as a “troublemaker.”

When Joan Boice took up residence at Emerald Hills in the autumn of 2008, the lack of staff was evident.

The facility didn’t assign any workers to the memory care unit on five nights, according to company time sheets.

Emeritus says the employees filled every shift in the memory care unit; they just didn’t keep accurate records of their labor.

Workers in the building felt overwhelmed and bitter. As discontent mounted, the facility director ordered employees not to share their complaints with the public.

“They do not need to know you are tired,” the director wrote in a memo. “They are NOT to hear we are short staffed.”

Then Emeritus decided to shrink the payroll even further. The facility reduced the number of med techs. That meant there would only be one such employee on duty during the facility’s busiest shifts.

Jenny Hitt was one of the med techs affected by the downsizing. Hitt had to keep track of “thousands” of pills coming into the building from a host of different pharmacies. Some residents were taking “15 different prescriptions” and needed to receive pills up to six times per day.

Hitt, who didn’t complete high school and had no medical education, said she was so busy that she sometimes had to “run down the hallways” to get all of her rounds done.

The company, she said, often assigned her to double shifts and once kept her on duty for 24 hours straight.

After Hitt made multiple calls to the company’s “Ethics First” hotline — a supposedly anonymous in-house reporting tool — Emeritus fired her. Her boss told her she had made a medication mistake. She says she was fired because she was calling attention to the building’s failings.

Out of a job, Hitt said she felt only relief. She was weary of worrying that she might kill someone.

Language Had Left Her

In Room 101, Joan’s room, the ulcer on her foot worsened. One day slid into the next. An Emeritus employee faxed a message to Joan’s physician: Joan “seems to be experiencing more frequent and intense pain…She has trouble putting weight on her right foot…Please advise.”

It was Oct. 14 — a full two weeks after the Emeritus worker had first noted the wound in her records.

The physician promptly faxed back instructions: Bring her in for X-rays of her right foot and ankle. Joan’s family was responsible for taking her to appointments with her doctor, but nobody at Emerald Hills told the family about the doctor’s order.

It would be three more weeks before the facility finally informed the Boice family about Joan’s damaged foot. An Emeritus worker phoned Kathleen Boice, Joan’s daughter-in-law, who lived nearby, on Nov. 3. Blood, the employee said, was seeping through Joan’s sock.

Eric Boice took his mother to the doctor on Nov. 4. The doctor’s notes show that the physician thought the wound might have been an ulcerated bunion; the physician, Tayyiba Awan, wondered whether Joan had been lying on her side for long periods of time. The wound had scabbed over and seemed to be healing. Awan did not examine the rest of Joan’s body for sores.

But Joan had other issues, the doctor noted. She’d lost much of her ability to move the right side of her body. The doctor wondered whether she had suffered a series of minor strokes. And so she ordered physical therapists to visit Joan at Emerald Hills to try and improve her mobility.

Back at Emerald Hills, Myron came to Joan’s room frequently, often bringing snacks. Eric Boice would visit his mother one day; the next, Kathleen would visit.They divided the labor, and the heartache.

Over the weeks, Kathleen came to think something was “weird.” But she couldn’t figure out what was going on with Joan. And Joan couldn’t say what was wrong. Language had left her.

“You know, most of the time she was in a bed. Blanket sheets up on her,” Eric recalled. “You know, I sat with my mom, I held her hand and I spoke to her.”

He told her what the grandkids were doing. He’d inform her if his son had played a baseball game the day before.

Disease had transformed his mother. It had spun their roles around. But in Room 101, Eric couldn’t always bring himself to treat his mother like a child. He just never felt comfortable asking her to undress so he could examine her.

If Eric had seen her skin he might have understood what was going on. There wasn’t just a single wound. The pressure ulcers were marching across her body.

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