Cuts to Michigan’s mental health budget cost state’s most vulnerable

Ann Mullen, Ross Jones and Adam Brewster

Watch the video here: 

Newly instituted cuts have left some of Michigan’s most vulnerable without health services that mental health providers say could have catastrophic results.

The cuts effect those with mental illness, developmental disorders and other conditions, like Christy Assenmacher’s son Denny.

“He had been different since he was born, I could tell there was something different since the day he was born,” Christy said.

Ten years ago, Denny was diagnosed with severe autism, a disorder that makes it virtually impossible for him to understand other people, communicate his feelings and develop relationships.  When he can’t express himself, Denny sometimes becomes violent.

“I’ve had to call the police on him a few times,” she said. “And he’s not a bad kid, he’s not a bad person.  He doesn’t understand this world and when he’s upset, he doesn’t know how to deal with it.”

Ever since his diagnosis, Denny and his mom have found respite at an agency called The Guidance Center, a non-profit group that provides mental health services that Christy’s insurance won’t cover, but the State of Michigan would.

The center offers services like speech therapy, in-home support, someone to help Denny in school and a case manger to handle his therapy and medications.  For Christy, it was a lifesaver, especially since her husband—a longtime Southgate police officer—died suddenly last year of a heart attack.

“He’s come so far because of all the help.  It takes so many people to help a child with autism really improve or thrive,” Assenmacher said.

Health coverage expands, but some services end

But earlier this year, those services abruptly stopped after lawmakers in Lansing cut funding to them by more than half.  It happened after Governor Snyder proposed something called Healthy Michigan, a program that expanded Medicaid to nearly half a million more Michigan residents.

It was hailed by both parties, shifting health coverage expenses from the state to the federal government, and saving the state millions.  When it became law, the state cut back on how much it put towards kids like Denny, thinking Medicaid would cover the difference.

But mental health providers across Michigan say the state cut too deep: more than $40 million too deep.  It caused them to cut back their programs, and left kids like Denny and others out in the cold.

Denny’s mom doesn’t qualify for Healthy Michigan because she makes too much money, but her insurance won’t pay for the services that her son needs, and she says she can’t afford them.  Denny’s been without help from the Guidance Center for three months, and his mom says he’s getting worse.

“When’s the last time he was violent?” asked Channel 7’s Ross Jones.

“This weekend,” she responded. “He got a butter knife, and I‘m sure he wouldn’t have used it but, he starts pushing and shoving me.”

Christy’s other son, 12-year-old Eric, ultimately came to her mom’s defense.  She says today, he’s her only support.

“He helps me, he’s stronger and he keeps Denny in line a lot,” she said.

Lynda Zeller is a deputy director in the Department of Community Health, which pushed the cuts to state mental health spending, from $281 million in 2013 to $97.5 million in 2015, and says no one should have lost coverage.

“There should be a smooth enough path where no one should have to lose services,” Zeller said.

“But some have, and are you comfortable knowing that some are?” Jones asked.

“Of course, none of us are comfortable when a person needs services who had them before doesn’t have them,” Zeller responded.

Service cuts deemed “unintended consequences”

For 30 years, Adult Well-Being Services of Detroit has provided guardians for the mentally disabled, elderly and abused who can’t take care of themselves. But in April, CEO Karen Schrock and her board of directors chose to end the program, citing a lack of funds.

“This is an example of unintended consequences,” Schrock said, speaking of the Healthy Michigan program.  “You think you’re doing a good thing and you think  you’re planning properly.

Today, Adult Well-Being Services is scrambling to find new guardians for approximately 140 clients.  Schrock believes that at least half won’t be able to find alternatives.

“Without this kind of oversight and support,” she said, “people will die.”

High-ranking senator ducks questions

Pleas from people like Schrock didn’t convince Lansing lawmakers to add funding during this week’s budget negotiations.  Their scheduled summer recess begins today, and they will leave the Capitol without providing any additional funding to help kids like Denny.  It’s a decision that some, like Senator Roger Kahn, aren’t eager to discuss.  He refused to be interviewed for nearly a week, then ducked out a back elevator on Tuesday just to avoid questions.

When approached Tuesday by 7 Action News in Lansing on the senate floor, Kahn literally fled from our camera.

“I’m being harassed by this gentlemen,” Kahn told a senate security guard, before escaping to his office.


Panel to Create Plan to Reduce Number of Mentally Ill People in New York City Jails

Joseph Goldstein
NY Times
June 1, 2014

Mayor Bill de Blasio has asked several of his commissioners and aides to provide him with a plan by September to reduce the rate of incarceration among New Yorkers with mental illness.

The effort, which City Hall will announce on Monday, is the administration’s first major criminal justice initiative. Named the Task Force on Behavioral Health and the Criminal Justice System, it will include recommendations from the police and correction commissioners, the Manhattan district attorney, hospital administrators and judges.

The initiative comes at a time when the city’s jail system is struggling to manage a large number of mentally ill inmates. The Department of Correction is investigating the death of a mentally ill homeless veteran in February who had been left unattended for hours as the temperature in his cell climbed above 100 degrees.

“For far too long, our city’s jails have acted as de facto mental health facilities,” Mr. de Blasio said in a statement, in which he explained that he was directing the task force to develop “innovative strategies to transform, reform and update this city’s criminal justice system” and figure out how “we can provide real, lasting mental health and addiction treatment for those in need.”

While the task force will look at the treatment of mentally ill inmates on Rikers Island, it will also seek ways to reduce the number of people with mental illness who end up in the criminal justice system in the first place.

Elizabeth Glazer, the mayor’s criminal justice coordinator and one of the task force leaders, said that the group would seek ways to encourage alternatives to arrest and prosecution.

“If someone picks up the phone and calls 911 because they see someone acting out on the street, then what does the police officer do?” Ms. Glazer said. “Is this criminal behavior? And a lot of things can be described as criminal behavior, but the best intervention is not necessarily an arrest. What’s the best way to make a diagnosis? Is it up to the officer to make that diagnosis?”

Ms. Glazer said the task force would weigh a number of possible changes, such as teaming officers with social workers or other mental health professionals and providing more intensive training to officers on identifying and dealing with individuals with mental illnesses.

Part of the goal, she said, would be to provide police officers with more options when they respond to the 100,000 calls received each year regarding “emotionally disturbed persons,” a catchall term that covers a range of mental health issues.

The task force’s review of the Police Department’s interactions with the mentally ill is likely to examine its handling of so-called quality-of-life offenses, generally low-level infractions that have been aggressively enforced under the leadership of Commissioner William J. Bratton. These offenses account for a significant percentage of arrests.

“It’s something we have to look at — how these two things intersect,” Ms. Glazer said.

The task force, she said, will also examine ways to provide better mental health care following release from the city’s jails to decrease recidivism.

Dr. Ramanathan Raju, a member of the task force and the president of the city’s Health and Hospitals Corporation, said public hospitals have to explore how to better engage “with the mentally ill after they leave the criminal justice system, so they stay connected to the hospital and the treatment component, and so they don’t regress back to their illness.”

There are “a lot of things we can do better,” he said. One proposal that could receive consideration from the task force, Dr. Raju said, would be to track the medication history of some patients to see whether they are filling prescriptions they need as part of their mental health treatment. Another proposal would be to send a social worker to the addresses of mentally ill patients after their release from jail to check up on them, he said. “When they go back to their communities, do we engage them to seek care?” Dr. Raju asked.


Behavior Therapy Aids Obsessive-Compulsive Disorder

Behavior Therapy Aids Obsessive-Compulsive Disorder

Behavior Therapy Aids Obsessive-Compulsive Disorder


Five antidepressant drugs are approved by the Food and Drug Administration for treating obsessive-compulsive disorder. But they are sometimes ineffective, and guidelines suggest adding an antipsychotic drug to the regimen. Now scientists have found that adding cognitive behavioral therapy, or C.B.T., may be more effective than an antipsychotic.

Researchers studied 100 people with O.C.D. who were taking antidepressants without sufficient improvement. They randomized 40 to the antipsychotic risperidone (brand name Risperdal), 20 to a placebo pill, and 40 to exposure and ritual prevention, a special form of C.B.T. delivered twice a week over eight weeks. All continued their antidepressants as well.

The study was published online in JAMA Psychiatry, and several of the authors have financial relationships with pharmaceutical companies.

Using well-validated scales and questionnaires, the researchers found that 80 percent of the C.B.T. patients responded with reduced symptoms and improved functioning and quality of life. About 23 percent got better on risperidone, and 15 percent on the placebo.

“It’s important to discontinue antipsychotics if there isn’t continued benefit after four weeks,” said the lead author, Dr. Helen Blair Simpson, a professor of psychiatry at Columbia. “O.C.D. patients who still have symptoms should first be offered the addition of C.B.T., and some will achieve minimal symptoms.

“There’s a hopeful message here,” she added. “There are good treatments.”

A version of this article appears in print on 09/17/2013, on page D6 of the NewYork edition with the headline: Mind: Behavior Therapy Aids O.C.D.

New Help for Hoarders

New Help for Hoarders


Michael Appleton for The New York TimesNew services and treatments have come along for those who can’t throw things away.

There were times, Sandra Stark remembers, when she couldn’t use her kitchen or sit on her sofa. Her collections — figurines, vases, paperweights — had overtaken every closet, drawer and surface. Stacks of clothing and old magazines added to the clutter.

Her daughters came in and threw everything away — to Ms. Stark’s horror — but a year later her home was again barely navigable. “I couldn’t throw out my garbage,” she said. “I put it in plastic bags, but I couldn’t take it out.”

A drop-in support group sponsored by theMental Health Association of San Franciscohelped her begin to control her hoarding behavior, and she has made considerable headway. “My bedroom is still a work in progress,” said Ms. Stark, 67. “But I can cook again.”

She has become a trained peer responder who works with others with this disorder. Many of the Mental Health Association’s clients are older adults: A woman in her 70s occupies one small room because the rest of her spacious house — leaking and mildewed — is filled with stuff she can’t discard. An 87-year-old, a compulsive thrift-store shopper, faces eviction because the city health department says she has created a safety hazard. “I’ll say, ‘Of these dozen black leather coats, pick two,’” Ms. Stark said, mapping her strategy to help keep the woman in her home.

Researchers are not sure if hoarding intensifies with age, but the problems it creates certainly do. “The older you get, the more stuff you’ve been able to accumulate,” said Randy Frost, co-author of the book “Stuff” and a Smith College psychologist. “And older people are less physically able to deal with it.” They are more prone to falls as they try to maneuver between piles of possessions and in a crisis, emergency crews may have trouble even entering their dwellings.

When I last wrote about hoarding almost three years ago (uncorking a wave of readers’ lamentation), I couldn’t offer much in the way of help except to steer people to the OCD Foundation. Though hoarding may not be a form of obsessive-compulsive disorder, its site remains useful.

At the time, experts knew what didn’t solve the problem, namely psychoactive drugs or “dumpster therapy,” in which well-meaning friends or family toss hoarders’ possessions, in a temporary fix that doesn’t change their behavior. But researchers were only starting to figure out what did work.

“This is an area in which there haven’t been a lot of answers,” said Eduardo Vega, executive director of the Mental Health Association of San Francisco. Now, “there’s a lot more hope and good will.”

Across the country, for example, cities, counties and states have formed about 80 hoarding task forces so that housing and health departments, senior service agencies, law enforcement and emergency units can coordinate their responses.

On the mental health front, the revised Diagnostic and Statistical Manual V is scheduled for publication in the spring, and many expect it will recognize hoarding as a distinct disorder with diagnostic criteria and a numeric code. That will make psychologists and other professionals more aware of the problem and, Mr. Vega said, “it will be easier to get insurers and providers to pay for treatment.”

Increasingly, there is treatment. Researchers have published studies showing that cognitive behavioral therapy can help, by encouraging people to reevaluate their attachment to possessions and supporting their decisions to start discarding.

Among patients in therapy groups, Dr. Frost has shown, 70 to 80 percent showed some improvement, he said. “That doesn’t mean they’re freed of symptoms, but their lives are improved and the behavior significantly reduced.”

Questions remain; several published studies use small samples that are heavily comprised of females, though hoarding may be more common among men. It is not clear, Dr. Frost said, whether cognitive therapy is as effective among older adults. And it is easier to find an individual therapist or a group in major cities than elsewhere. (Here’s a locator.)

But Dr. Frost and his co-authors have published a workbook called “Buried in Treasures,” along with a free facilitator’s guide, that allows people with hoarding disorders to form their own 15-session action workshops, led by peers rather than professionals. That approach, too, has brought measurable improvement (when used in groups, not individually), a study shows. “Here’s a way people can start working on this on their own,” Dr. Frost said.

Diagnostic criteria, treatment centers, workbooks, published research — all this is more than mental health professionals could offer years back. Still, compulsive hoarding remains a stubborn problem, a safety risk for older people and a heartache for their families.

“It’s really difficult for adult children,” who worry about their parents, but can’t induce them to change, Dr. Frost said. “There may be a history of animosity. Many report they grew up feeling their hoarding parents cared more about their possessions than about them.” The children, young or grown, could probably use a support group, too.

Paula Span is the author of “When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions.”



Affordable Care Act Fills Need in Mental Health Care

Affordable Care Act Fills Need in Mental Health Care


Like millions of Americans, we have struggled with addiction. Fortunately, we were able to access the treatment and recovery services necessary to get well. But for many people facing addiction or mental health issues without the necessary insurance coverage, such lifesaving services have been out of reach.

The Affordable Care Act changes that. A provision that passed with unanimous support requires that starting in 2014, health insurance plans cover mental health and addiction services as part of the essential benefits.

As a result of these historic changes, approximately 68 million Americans will have access to lifesaving mental health and addiction treatment services. Furthermore, these services, which have been misunderstood and marginalized for so long, will finally be fully integrated as part of a comprehensive approach to health care. That is, if the law is implemented as intended.

The far-reaching impact of this change cannot be overestimated. Research has found that one out of every five Americans will experience some type of mental illness at least once in their lifetime while over 20 million Americans currently need treatment for a problem with alcohol or drugs.

Untreated mental health and substance-use disorders cost American employers an estimated $17 billion annually in absenteeism and lost productivity. Studies have shown that every dollar spent on mental health care results in a savings of $12.

But Americans don’t need a lot of statistics to know that effective programs to address mental health and addiction save lives. Polls show that three in four Americans are concerned that people addicted to alcohol or drugs may not be able to get treatment because of cost or lack of insurance coverage.

While health care reform is designed to address these obstacles, unfortunately, there are many opportunities for this historic achievement to be derailed.

As part of health care reform implementation, every state is required to inform the Department of Health and Human Services of its choice of a benchmark plan, the minimum level of benefits for all insurance plans in the state. The benchmark plans are required to include coverage for mental health and addiction, but as with so many things, the devil will be in the details.

Variation among the states is to be expected — indeed, each state should tailor its plan to meet the needs of its residents. Yet some elements must be standardized for the full potential of this change to be realized.
Many state benchmark plans suffer from a lack of transparency and specificity about benefit coverage. As a result, it is difficult to determine whether certain substance-use and mental health services are covered, consistent with legal requirements. In addition, lifesaving benefits are potentially being excluded in certain states, including residential addiction treatment and certain medication-assisted treatments, an area that has seen tremendous advancements in the past decade.

Recently, the federal government released for comment proposed regulations regarding which services should be considered “essential” and thus required to be covered. Unfortunately, the new rules lack clarity regarding the standard for sufficient coverage for mental health and substance-use services.

The Mental Health Parity and Addictions Equity Act of 2008, which we sponsored and President George W. Bush signed into law, required that insurance coverage for mental health and addiction be equal to coverage of other illnesses. Health care reform set these principles in concrete and extended them. The next few months will be critical to ensuring the principle of parity becomes reality.

As HHS Secretary Kathleen Sebelius and her staff review benchmark plans and craft a final essential health benefits rule, it is vitally important to ensure the states receive sufficient federal guidance to comply with the consumer protections in the law. For true parity to be realized, HHS must ensure that plans cover a sufficient continuum of mental health and addiction-care services and that individuals have good access to that lifesaving care.

Millions of people are hoping the new health care law will make life better — for them and those they love. But there must be clarity and transparency to ensure fairness and effectiveness.

The need for mental health and addiction treatment is urgent; the public support is widespread; and the path forward is within reach. Now is the time for policymakers to ensure the promise of truly integrated, comprehensive care for those facing mental health and addiction issues is finally realized.


Memoir Traces How Cartoonist Lost Her ‘Marbles’

Memoir Traces How Cartoonist Lost Her ‘Marbles’

When you think of mental illness, you don't often think of comics; but for cartoonist Ellen Forney, the two came crashing together just before her 30th birthday. That's when she found out she has bipolar disorder, a diagnosis that finally explained her super-charged highs and debilitating lows.

Now that diagnosis is also the subject of Forney's new graphic memoir. It's called Marbles, as in losing one's marbles — a hint that this memoir is both painful and funny. It opens just after a wild trip to a tattoo parlor leads Forney to a psychiatrist. She joins NPR's Renee Montagne to discuss what that psychiatrist told her and how she came to reconcile her illness with her artwork.

Interview Highlights

On learning she was bipolar

“The psychiatrist was the one, after the second visit, who told me that I was bipolar. And I didn't believe it briefly. We went through the symptoms together in the DSM — the Diagnostic and Statistical Manual of Mental Disorders, basically the bible of mental disorders. And we went through the symptoms, one by one, and it sank in. And it was just a very, very strange, strange feeling to see what I had thought of — in particular when I was manic — as super-duper me; exponentially me; very, very, very me. And to see it right there in a book.”

On becoming part of “Club Van Gogh,” a list of writers and artists with depression

“I think that Van Gogh is really the ultimate crazy artist that we all think of. And so there was a certain sense of cred to being part of that [club]. I found that list both encouraging, and I felt like I had company; and at the same time it was terrifying because all of these artists and writers who had done such brilliant work hadn't been medicated, for the most part.”

On the notion that treating her condition might medicate away her creativity

“I find that stability is good for my creativity. There are different artists that I found that feel differently. Poet Anne Sexton was one. It was her opinion that it was the responsibility of artists to feel intense pain so that we could express that for other people who couldn't express it themselves.

“But then, of course, she committed suicide as well. So if you're talking about how creative someone with a mood disorder can be, that really cuts short your creativity and productivity if you cut your own life short.”

On a section of the book that shows her being swept into mania

“On the left side of the page, there's this sense of what stability is about. There's a house and a dock. And then, swooping over onto the right side of the page, is me desperately reaching for the dock, with the rope that had secured me there broken and [me] knowing that I was [being] swept into this depiction that I did of mania, which is this big cloud of mermaids and hearts and stars and swirls and woosh! And I could feel that I was slipping, that I was becoming unmoored, and there was really nothing that I could do to keep that from happening.”

On the book's sense of humor

“It was very important to have humor in the book. For one, it's much easier to take in a difficult story if there's relief. There's a relief in being able to laugh. Like, for instance, in the book there's a scene where, because of my health insurance that didn't cover mental health, I had to go to the cheapest place for my meds that I could find, and that was Costco. And so I would, very depressed, have to drive myself down to this huge, brightly lit, full of enormous tubs of peanut butter and Twizzlers [Costco], and I would go to the pharmacy there. And they did this thing at the time that I hope they don't do anymore, which is, with all of the rest of the people around, they call your name — your full name, 'Ellen Forney' — and to make sure they have the right prescription, they say, 'Lithium.' And so that kind of thing, maybe it wasn't funny at the time — and I would have to say it was not funny at the time — in retrospect, just the absurdity of it [is] very funny.”

  You will be able to listen to the story by going to the website below.


Gandhi: Depression’s Spiritual Transformation

Gandhi: Depression’s Spiritual Transformation

Mohandas Gandhi was one of the principle leaders of India’s movement for independence from the British Empire. Independence was achieved in 1947. He is also recognized as the world’s foremost proponent of non-violent civil disobedience as a force for change, which greatly influenced the civil rights movement in the United States in the 1950s and 1960s.

Gandhi was born in 1869. During his life, he lived through episodes of depression, including a suicide attempt as a teenager. He was also said to be shy and sensitive.

Following India’s independence, he endured his most severe episode of depression.  India faced many tragic problems, including poverty and hunger. These issues weighed heavily on him as the “father of his country.”

Gandhi also felt a sense of personal failure. Independence was achieved at the cost of India being divided along religious lines into two separation nations: India, where the population was predominantly Hindu, and Pakistan, where the population was Muslim. The partition led to bloody riots in many cities between Hindus and Muslims. Gandhi saw it as a rejection of his philosophy of non-violence and collapse of his life’s work.

Gandhi spoke of his depression openly, confounded and frustrated because he lacked patience and “technique” to overcome it.

He once believed he could live to be 125, but told a reporter, “I have lost the hope because of the terrible happenings in the world. I don’t want to live in darkness.” The tone of his speeches, his “voice,” grew less optimistic.

Gandhi’s sense of failure and depression led to deeper reflection over his philosophy of non-violence and his life’s work. In a sense, he revisited choices he had made over the years, struggling with self-doubt. The result was reaffirmation, and to some degree, transformation.

Reflection often is part of cycles of growth in all people, especially those confronted by loss. This includes individuals living with mental illness as part of a process of recovery.

As a lawyer in South Africa, early in his career, Gandhi led opposition to legal discrimination against the Indian minority. It was the period when he first developed his philosophy of non-violent civil disobedience. When he returned to India in 1915, because of his work in South Africa, he became known as “Mahatma,” meaning “Great Soul.”

It was a title Gandhi did not like, until the last year of his life, as part of his transformation. He told a granddaughter: “I am a true Mahatma.”

His outlook included a sense of fatalism. Because of his teachings and work, he always believed he would die at the hands of an assassin, a death he said, he would gladly accept. In 1948, a Hindu extremist shot Gandhi to death, as part of a conspiracy whose members believed he favored Muslims in trying to end India’s violence.

Much of this article, including quotations, is based on the essay “From Mohandas to Mahatma:  The Spiritual Metamorphosis of Gandhi” by Karen E. James in Essays in History, Vol. 28, pp. 5-20  Corcoran Department of History  of the University of Virginia (1984), at


Seeing Things? Hearing Things? Many of Us Do

Seeing Things? Hearing Things? Many of Us Do

HALLUCINATIONS are very startling and frightening: you suddenly see, or hear or smell something — something that is not there. Your immediate, bewildered feeling is, what is going on? Where is this coming from? The hallucination is convincingly real, produced by the same neural pathways as actual perception, and yet no one else seems to see it. And then you are forced to the conclusion that something — something unprecedented — is happening in your own brain or mind. Are you going insane, getting dementia, having a stroke?

In other cultures, hallucinations have been regarded as gifts from the gods or the Muses, but in modern times they seem to carry an ominous significance in the public (and also the medical) mind, as portents of severe mental or neurological disorders. Having hallucinations is a fearful secret for many people — millions of people — never to be mentioned, hardly to be acknowledged to oneself, and yet far from uncommon. The vast majority are benign — and, indeed, in many circumstances, perfectly normal. Most of us have experienced them from time to time, during a fever or with the sensory monotony of a desert or empty road, or sometimes, seemingly, out of the blue.

Many of us, as we lie in bed with closed eyes, awaiting sleep, have so-called hypnagogic hallucinations — geometric patterns, or faces, sometimes landscapes. Such patterns or scenes may be almost too faint to notice, or they may be very elaborate, brilliantly colored and rapidly changing — people used to compare them to slide shows.

At the other end of sleep are hypnopompic hallucinations, seen with open eyes, upon first waking. These may be ordinary (an intensification of color perhaps, or someone calling your name) or terrifying (especially if combined with sleep paralysis) — a vast spider, a pterodactyl above the bed, poised to strike.

Hallucinations (of sight, sound, smell or other sensations) can be associated with migraine or seizures, with fever or delirium. In chronic disease hospitals, nursing homes, and I.C.U.’s, hallucinations are often a result of too many medications and interactions between them, compounded by illness, anxiety and unfamiliar surroundings.

But hallucinations can have a positive and comforting role, too — this is especially true with bereavement hallucinations, seeing the face or hearing the voice of one’s deceased spouse, siblings, parents or child — and may play an important part in the mourning process. Such bereavement hallucinations frequently occur in the first year or two of bereavement, when they are most “needed.”

Working in old-age homes for many years, I have been struck by how many elderly people with impaired hearing are prone to auditory and, even more commonly, musical hallucinations — involuntary music in their minds that seems so real that at first they may think it is a neighbor’s stereo.

People with impaired sight, similarly, may start to have strange, visual hallucinations, sometimes just of patterns but often more elaborate visions of complex scenes or ranks of people in exotic dress. Perhaps 20 percent of those losing their vision or hearing may have such hallucinations.

I was called in to see one patient, Rosalie, a blind lady in her 90s, when she started to have visual hallucinations; the staff psychiatrist was also summoned. Rosalie was concerned that she might be having a stroke or getting Alzheimer’s  or reacting to some medication. But I was able to reassure her that nothing was amiss neurologically. I explained to her that if the visual parts of the brain are deprived of actual input, they are hungry for stimulation and may concoct images of their own. Rosalie was greatly relieved by this, and delighted to know that there was even a name for her condition: “Tell the nurses,” she said, drawing herself up in her chair, “that I have Charles Bonnet syndrome!”

Rosalie asked me how many people had C.B.S., and I told her hundreds of thousands, perhaps, in the United States alone. I told her that many people were afraid to mention their hallucinations. I described a recent study of elderly blind patients in the Netherlands which found that only a quarter of people with C.B.S. mentioned it to their doctors — the others were too afraid or too ashamed. It is only when physicians gently inquire (often avoiding the word “hallucination”) that people feel free to admit seeing things that are not there — despite their blindness.

Rosalie was indignant at this, and said, “You must write about it — tell my story!” I do tell her story, at length, in my book on hallucinations, along with the stories of many others. Most of these people have been reluctant to admit to their hallucinations. Often, when they do, they are misdiagnosed or undiagnosed — told that it’s nothing, or that their condition has no explanation.

Misdiagnosis is especially common if people admit to “hearing voices.” In a famous 1973 study by the Stanford psychologist David Rosenhan, eight “pseudopatients” presented themselves at various hospitals across the country, saying that they “heard voices.” All behaved normally otherwise, but were nonetheless determined to be (and treated as) schizophrenic (apart from one, who was given the diagnosis of “manic-depressive psychosis”). In this and follow-up studies, Professor Rosenhan demonstrated convincingly that auditory hallucinations and schizophrenia were synonymous in the medical mind.

WHILE many people with schizophrenia do hear voices at certain times in their lives, the inverse is not true: most people who hear voices (as much as 10 percent of the population) are not mentally ill. For them, hearing voices is a normal mode of experience.

My patients tell me about their hallucinations because I am open to hearing about them, because they know me and trust that I can usually run down the cause of their hallucinations. For the most part, these experiences are unthreatening and, once accommodated, even mildly diverting.

David Stewart, a Charles Bonnet syndrome patient with whom I corresponded, writes of his hallucinations as being “altogether friendly,” and imagines his eyes saying: “Sorry to have let you down. We recognize that blindness is no fun, so we’ve organized this small syndrome, a sort of coda to your sighted life. It’s not much, but it’s the best we can manage.”

Mr. Stewart has been able to take his hallucinations in good humor, since he knows they are not a sign of mental decline or madness. For too many patients, though, the shame, the secrecy, the stigma, persists.

Oliver Sacks is a professor of neurology at the N.Y.U. School of Medicine and the  author, most recently, of the forthcoming book “Hallucinations.”

Published: November 3, 2012


Patrick Kennedy: We need a different attitude on mental illness

Former Congressman Patrick Kennedy discusses the stigma surrounding mental health and mental illness.

by CNN

For Veterans, an Alternative to the Nursing Home

For Veterans, an Alternative to the Nursing Home

Paulia and Bienne Bastia set two dinner tables in their house in Mount Airy, Pa., each night, one for their three children, and another for themselves and the two older men the children call “Grampa.”

The Army veterans Booker Lovett, 79, and Wesley Ottis Furr, 95, are not related to the Bastias or to each other, but this has been their home since late winter. They’re participants in the Department of Veterans Affairs Medical Foster Home program, which places veterans who need round-the-clock care in private homes.

Mr. Lovett, who previously lived with his sister in Philadelphia, had a stroke — he still has trouble speaking — and has glaucoma. Mr. Furr, who maintained his own Philadelphia home, remains talkative and agile despite his age.

The Bastia children, ages 5, 6, and 7, consider the veterans family. Mr. Bastia thinks of them as father figures — he calls each “my king.”

“I felt at home as soon as I come here,” Mr. Furr said.

Mrs. Bastia, 36, a certified nursing assistant, and Mr. Bastia, 45, owner of a tax preparation business, drive the men to appointments, serve meals tailored to their dietary needs and administer medications. The Bastias can communicate with a nurse through a V.A.-provided telehealth monitor equipped with a video camera, blood pressure cuff and other equipment.

On a recent afternoon, Mrs. Bastia fastened the cuff on Mr. Furr’s thin arm while a nurse at the Philadelphia V.A. Medical Center 13 miles away observed. “Thank you, your blood pressure reading has been accepted,” said an automated voice from the monitor.

Medical foster homes provide an alternative to nursing homes for veterans who are unable to live safely and independently at home or lack a strong family caregiver. Conceived in 2000 by V.A. social workers in Little Rock, Ark., the program currently serves 535 veterans; it has cared for 1,468 since it began.

Though the veterans range in age from 23 to 101, their average age is 70. About half have some form of dementia. They often stay until they die, an average of 459 days.

“I know a lot of people suffering,” Mrs. Bastia said, explaining why she decided to participate. “I used to work in nursing homes. I know how it’s like when you get 14, 16 people to take care of. You don’t have time to do what you’re supposed to do. I figure out, if I take them to my house they can get more care.”

Now operating through 73 V.A. sites in 36 states, the medical foster homes program is scheduled to expand to 10 more states within two years. Eventually, the V.A. hopes to introduce the program to all 153 of the agency’s medical centers, said Dan Goedken, national program analyst.

It costs a site about $260,000 a year to introduce the program; each site can serve up to 30 vets. The V.A. finances each place for two years, after which the program is expected to be self-sustaining, said Dr. Thomas Edes, national director of geriatrics and extended care operations at the V.A.

Though medical foster homes are intended to provide better care, not to reduce costs, they operate for half the cost of nursing homes. “It is quite likely that it will save V.A. money and taxpayer money and veterans’ money,” Dr. Edes said.

The Bastias, who met in Florida after emigrating from Haiti, went through months of interviews and background checks to qualify as caregivers. A social worker, a nurse, a dietitian and a fire-safety expert inspected their two-story home on a quiet suburban street, and it will be reinspected annually.

Given the vulnerability of the older veteran population, the V.A. approval process is rigorous. Only one in 10 to 15 applicants are selected. People with no formal training can apply, however, and many with family caregiving experience do. Once a veteran is placed in a home, the V.A. provides training for tasks like cleaning wounds, managing incontinence and safely transporting the new residents.

And it provides periodic respite for caregivers. “It really is 24/7 care,” Mr. Goedken said. “This is a fairly intensive expectation on our part on what they’re going to do. Some willingly back away.”

Veterans pay $1,800 to $3,000 a month for care, depending on their medical needs, often using their combined V.A. and Social Security benefits. Mr. Furr and Mr. Lovett each pay the Bastias $2,000 a month for their shared bedroom and their care. The couple has another room available and is awaiting a third veteran, the maximum allowed.

A national V.A. study measuring veterans’ satisfaction and costs won’t be completed until 2013 and 2015. But 30 percent of veterans who would qualify for V.A.-paid nursing homes choose instead to pay out of pocket for medical foster homes — evidence, Dr. Edes said, that they prefer a home setting.

Even with dementia or mental illness, “they recognize this as their home. It’s very familiar,” he said. “They’re given a lot of autonomy. And it’s very one-on-one attention.”

Mr. Furr and Mr. Lovett get along well in their dorm-style room, with its twin beds and flat screen television. They take turns — Mr. Furr watches the news, while Mr. Lovett prefers football. One is a Democrat and the other a Republican, so they keep political talk to a minimum. Members of Mr. Furr’s congregation drive him to and from his Methodist church twice a week, and he often takes walks. He recently surprised his roommate, who prefers napping and relaxing at home, with a box of Lorna Doone cookies.

“I don’t expect him to be like me, and I can’t be like him,” Mr. Furr said. “So, I accept him as he is and he accepts me as I am. It’s a good deal.”