Support for assisted outpatient treatment (AOT)

While the Treatment Advocacy Center is the only organization that has a dedicated mission to increasing the use of AOT, numerous other organizations and individuals support AOT including:

• NAMI’s official policy states that AOT should be used as a last resort and that “Court ordered outpatient treatment should be considered as a less restrictive, more beneficial and less costly alternative to involuntary inpatient treatment.”
• The National Sheriffs Association recognizes that “the consequences of non-treatment can also be prevented by having laws that allow a court to order treatment in the community for individuals who are in need of treatment but refuse it (also known as Assisted Outpatient Treatment).”

When Dr. Torrey speaks, people listen

Dr. Torrey made a major presentation to a crowd of about 700 people at the NAMI Convention in San Diego last month. His talk, entitled The Causes And Consequences Of Our Failure To Treat Individuals With Severe Psychiatric Disorders was received enthusiastically. Advocates were motivated to return to their home states and advocate early and sustained treatment for the most severely ill in their families and communities. One advocate wrote:

I attended the NAMI National Conference in San Diego and was fortunate to hear Dr. Fuller Torrey speak. I agreed with everything he had to say. What a wonderful dedicated soul. We need more like him and you!!!

To view Dr. Torrey’s powerful Powerpoint presentation go to the TAC website.

Who is left to do the right thing?

William Demegall got 25 to life for the stabbing, bludgeoning and burning of 56-year-old George Mancini. His severe mental illness, though acknowleged by the court, was not seen as a factor in sentencing.

Despite pleas by members of the local NAMI, the judge gave Demegall the maximum sentence possible.

Once again, we turn to the prison system as the last hope for treatment. As the editors of the local paper noted in an editorial today:

"It is now up to the New York State Department of Corrections to be the institution, at last, to do the right thing in this case and assign Mr. Demagall to a facility that can properly treat mental illness." [Berkshire Eagle, March 23, 2007]

Feds address Medicaid discrimination?

Congress is finally taking a look at the discriminatory Medicaid IMD exclusion.

When initially enacting Medicaid, the federal government specifically excluded payments for patients in state psychiatric hospitals and other "institutions for mental diseases," or IMDs, to accomplish two goals: fostering deinstitutionalization; and shifting the costs back to the states, which were viewed by the federal government as traditionally responsible for such care.

States proceeded to transfer massive numbers of patients from state hospitals to nursing homes and the community where Medicaid reimbursement was available. This resulted in a massive transinstitutionalization of people who needed inpatient care to facilities ill-equipped to fully help them.

TAC has long advocated for repeal of this discriminatory provision. We urge you to contact your representatives and call for passage of HR 1155.

From a NAMI email alert:

Congresswoman Eddie Bernice Johnson (D - Texas) has introduced a bill, HR 1155, to repeal the current prohibition on the use of Federal Medicaid dollars to pay for services for individuals between the ages of 22 and 64 in private and public inpatient psychiatric treatment facilities. If enacted, HR 1155 would be extremely helpful both in addressing the ongoing crisis in inpatient services for people with severe mental illness and potentially expanding the availability of community-based services for these individuals. HR 1155 has been referred to the House Energy and Commerce Committee for consideration. Your Representative sits on this Committee. We urge you to write to your Representative and urge his/her support by co-sponsoring HR 1155.

Hospitals are victims as much as villians

A series from the Atlanta Journal Constitution earlier this month focused on at least 115 suspicious deaths of patients in Georgia’s seven psychiatric hospitals and more than 190 cases of physical or sexual abuse. The series also documents violence against hospital employees and ties much of the horrors back to gross understaffing and underfunding of these institutions.

There are calls for a legislative commission – and NAMI wants the U.S. Justice Department to launch an investigation.

For decades there has been a widespread and concerted effort to close down hospitals and move patients into community treatment. Community providers take the money that comes with such a shift with ease, but then balk at performing some of the more critical hospital functions, including involuntary treatment. At the same time, there is little realization that some people need intensive inpatient care – and for those people, the cry should be not to kick them out of the hospitals, but to make the hospitals better. The result is that some of the sickest people are left behind, because neither the much-touted community services or the outdated and underfunded hospitals can address their very real and immediate treatment needs.

Horrors like those listed in the AJC stories are eye-opening and terrifying – but the hospitals did not end up underfunded and understaffed by their own choosing. As Dr. Jeffrey Geller says in the series:

"Ultimately, do the taxpayers want to do what's needed to be done in their state hospitals, or not?" says Dr. Jeffrey Geller, director of public sector psychiatry at the University of Massachusetts Medical School.

"It's too simplistic to make the state hospital the isolated villain," he says. "The state hospital is as much a victim as a villain — a victim of inadequate funding, a victim of the general population of the state not caring enough about its most unfortunate and disenfranchised, a victim of ineffective utilization of resources that do exist."

State of the Union: Mental Illness

From National Journal - mental illness is one of the issues you will NOT hear addressed in tomorrow's State of the Union ...

After 40 years of blue-ribbon panels, myriad reports, and poorly aligned public policies, severe mental illness remains an intractable and deepening problem in America. For proof, look no further than the homeless lady muttering on the corner outside your office building.

"Mental illness is the No. 1 public health crisis in the U.S. today," declared Ron Honberg, legal director for the National Alliance for the Mentally Ill, an advocacy group based in Arlington, Va. ...

In 2001, the most recent year for which official figures are available, the U.S. spent $85 billion on mental health treatment. Experts estimate that figure is closer to $130 billion today, with federal prescription coverage included. The costliest subset by far is the severely and persistently mentally ill -- about 12 million adults with schizophrenia, bipolar disorder, and major depression -- who account for 58 percent of the spending, according to researcher and activist E. Fuller Torrey ....

It doesn't help that the federal government continues a long-standing ban on the use of Medicaid money to fund state mental hospitals, said Mary Zdanowicz, executive director of the Treatment Advocacy Center. The policy led to a wholesale emptying of state psychiatric hospitals in the mid-1960s and another wave of discharges in the early 1990s. "In Virginia, we've closed 50 percent of state hospital beds in the last 20 years," Zdanowicz said. "That's a critical -- and often overlooked -- loss for people who need intensive treatment for a severe mental illness."

"I'm the face of a thousand people behind me just crying for help"

One mother in Utah has tried to help three of her adult children get the treatment they need. But what does it take to get them that treatment?

For these three siblings, the answer was murder, a suicide attempt, and an arrest. Two of the three are now receiving treatment in prison.

In 2005, nearly 1,300 people deemed "seriously and persistently mentally ill" were booked into Salt Lake County Metro jail. To incarcerate, assess and treat this population would cost the county more than $7.3 million.

That's just one jail system, and doesn't account for the human costs, said [Sherri] Wittwer [of NAMI Utah].

"What a difference it would make, for the individual, the family and the community, if we intervened earlier."

"How am I to understand medication is relevant?"

Pam Wagner and her sister, authors of “Divided Minds,” are sought after speakers. In this excerpt of Pam’s speech at a recent NAMI meeting, you can see why.

I could be your daughter or your son, your sister or brother, your mother or father, your friend or your neighbor. I suffer from schizophrenia.

She goes on to talk very compellingly about compliance and side effects, as well as lack of insight. In her words …

The right medications can help, though, and when the side effects are tolerable, they make the difference between chronic illness and recovery. I wouldn’t be standing here today without them.

But if, as I believed in the mid-1980s, the CIA and FBI control me through a microchip implanted in my tooth, how do I know pills could resolve that? If I hear invisible voices that sound real, and think bizarre thoughts that feel true, how am I to understand medication is relevant? The solution is obviously to get rid of the radio in the wall or go to the Middle East, find 22 linguists, and translate Gray Crinkled Paper?

I asked the dentist about my tooth. For a moment, he looked taken aback, but he regained his composure and answered, “I understand you believe there’s a microchip in your tooth. I don’t think that’s possible. I think it’s a symptom of your illness. But I’ll take a look if it will make you feel better.”

Read more from the always-gripping blog of Pam Wagner.

Laura's Law extended - now lets get it implemented

California's Laura's Law was extended to 2013 with a stroke of the Governor's pen on Friday. The bill (AB 2357) was overwhelmingly supported by California legislators (30-4 in the Senate and 65-5 in the Assembly).

California legislators sent a clear message about the county-determined program: California counties must help people with severe mental illnesses who are too sick to help themselves, and counties will be given more time to use a nationally proven program to do just that.

Nick and Amanda Wilcox - Laura's parents - are to be commended for their advocacy, as are the determined advocates at California Psychiatric Association, NAMI California, the California Medical Association, and a variety of supporters, from police chiefs to judges to editorial boards from the Los Angeles Times to the San Francisco Chronicle.

The California Treatment Advocacy Coalition and The Treatment Advocacy Center together produced "A Guide to Laura's Law" to help counties with implementation. We hope now that there is more time, people will get moving to bring this important treatment tool to those who need it most.

* * *

MORE: Statement by TAC Executive Director Mary Zdanowicz: LAURA’S LAW EXTENDED TO 2013: California legislators overwhelmingly support mandating treatment to the sickest – counties have green light to help those with the most severe mental illnesses

Everyone is sad ...

TAC's official statement: In memorium: Dr. Wayne Fenton

Groups like NIMH, NAMI, and AFSP issued statements, and the story was retold around the country, in papers like the LA Times and popular blogs like Liz Spikol's.

There is hope

Congratulations to Rae Belle and Roger Gambs on being honored by NAMI California this weekend for their endless advocacy on behalf of the most severely mentally ill. Perhaps their greatest accomplishment was saving their own son’s life.

“The Gambses watched Rodger use street drugs, become homeless, get arrested, go to jail and face four years in prison before finally, in 1999, he was ordered by the court to seek treatment. Rodger Gambs recovered successfully and now lives on his own in San Luis Obispo.” [UPDATE: Read a stunning editorial tribute to the Gambs' in the August 25, 2006 San Luis Obispo Tribune ...]

There are so many tragic stories that we sometimes forget to celebrate the successes and honor the families who refuse to give up, persevering until they save their loved ones. (We especially thank those willing to share their positive experiences and success stories to help tear down the barriers for others.)

Jodey Lacey helped save her son Nicholas when she began to see signs of mental illness after he left for college. She reminds us, as teens head off to college, how important it is to recognize the symptoms of mental illnesses. Nicholas explains the role of medication in his recovery.

"Medications have helped control my symptoms of schizophrenia without negatively affecting my ability to do art work and enjoy life. Living with schizophrenia isn't easy. As a young person, I had to learn the hard way that I couldn't run away from my problems. It took many years before I realized that I needed to take my medication on a daily basis."

Jared Harvey has schizophrenia and is featured in the documentary "How Do You Eat an Elephant?" which explores the barriers mentally ill people face in integrating with society.
Jared gives others hope:

"Most of the time it's OK. As long as I take my medication, I can tell the difference between the hallucinations and what's real. As long as I keep myself moving, go to school, the easier it is to overcome the depression and the psychotic symptoms. And you learn to live with it."

NJ Senate votes today

The full New Jersey Senate will vote on SB 1093 TODAY at 2:00 pm. It is supported by grops like NAMI New Jersey, The New Jersey State Association of Chiefs of Police, and The New Jersey Psychiatric Association.

It was also recommended by The New Jersey Governor's Task Force on Mental Health. "The Task Force concluded that any comprehensive reform of a mental health system requires that the needs of the people with the most severe and persistent mental illnesses be addressed," said Task Force Chair Bob Davison."Our careful deliberations and extensive research led us to conclude that for those who are too ill to access mental health services, IOC strikes the appropriate balance of individual's well being and their constitutional liberties."

NJ hospital admissions and AOT

“Admissions and census levels at the state hospitals have remained at higher levels than would be preferred.”

That quote comes from the New Jersey Department of Human Services, responding to a question regarding the continually high census rates at state hospitals despite significant investments in community resources. Unfortunately, these investments havn't resulted in the sort of reductions the state anticipated. In fact, the total hospital census for FY 2006 is over 125 individuals higher than it was in FY 2001.

One factor that directly contributes to these numbers is New Jersey’s lack of an assisted outpatient treatment law. Without an effective means for ensuring that the most severely mentally ill maintain their treatment in the community, New Jersey’s most ill are allowed to cycle in and out of hospitals, jails, and the streets.

Data from the state shows just how drastic a problem New Jersey is facing. The Division of Mental Health Services reported that almost 10% of individuals between the ages of 18-64 admitted to a state hospital are readmitted within 30 days of discharge. The readmission rate jumps to 22% in the 6-month period following discharge. According to the New Jersey Office of Mgmt. & Budget, readmission rates are estimated to be as high as 35% at one of the state hospitals.

Fortunately, hope is on the horizon. Senator Richard Codey, with the support of groups like NAMI NJ, the NJ Psychiatric Association and the Governor’s Task Force on Mental Health, introduced SB 1093, a bill that would finally provide for an AOT law in New Jersey – and give hope to the most severely ill.

Services can fail when treatment law is weak

An intensive outpatient program that is being discontinued, "changed my life" according to an Albuquerque woman who had been hospitalized for mental illness and suicidal thoughts.

All outpatient programs in New Mexico are voluntary because the state is one of eight that does not have assisted outpatient treatment. So it should not be a complete surprise "that many patients weren't showing up for the nine required hours per week,” according to Dr. John Lauriello, executive medical director at the UNM Psychiatric Center.

If they didn't show up for a full nine hours, insurers wouldn't reimburse UNM for the service.

Opponents said "mandated treatment wouldn't work in New Mexico, due to a lack of services." But, this is a case where services didn't work, in part, because New Mexico does not have AOT.

It is important to have as many options as possible to increase treatment compliance, including AOT, particularly in communities that have a dearth of services. Nonadherence to treatment has significant fiscal (and clinical) implications.

For example, medication nonadherence is a significant factor in hospital readmissions. A study of Medicaid recipients with schizophrenia in California revealed that “individuals who were [medication] nonadherent were two and one-half times more likely to be hospitalized than those who were adherent.” The same study found that those who are non-adherent incur 43 percent more in service costs than those who adhere to medication.

AOT can help reduce such costs by improving medication compliance. Under AOT in New York the number of individuals exhibiting good adherence to medication increased by 103 percent and good service engagement increased by 51 percent.

Last week NAMI gave a D+ grade to the state that spends the most per capita on services – this could be because Pennsylvania is a state that has an overly restrictive AOT law that is rarely used, making services ineffective and inefficient – like New Mexico.

Grading the States: New Mexico, C-

NAMI today released a state-by-state report card called “Grading the States.” It shows that most states are dramatically failing those with mental illnesses.

Initial reaction from U.S. Senator Pete Domenici on New Mexico’s dismal C minus:

"While our efforts so far have raised public awareness about mental health issues, it's clear that more needs to be done."

Domenici said the [New Mexico] Legislature should have passed Kendra's Law to allow a patient's family or doctors to obtain a court order requiring the patient to get treatment. The law is named for Kendra Webdale, a New Yorker killed by a schizophrenic.

Read Domenici's earlier statement on Kendra's Law.

APA, NAMI defend AOT in WSJ

The Wall Street Journal [subscription required] today ran three strong letters to the editor in support of assisted outpatient treatment and TAC.

As one family member said so eloquently: “I can safely say to the civil libertarians that this isn't the life [my brother] would have chosen for himself; it was chosen for him by his untreated illness.

Steven S. Sharfstein, M.D., President of the American Psychiatric Association:

One of the great tragedies of modern psychiatry is the large number of incarcerated individuals who are mentally ill or drug addicted ("A Doctor's Fight: More Forced Care for the Mentally Ill," page one, Feb. 1). This is the inevitable consequence of our reluctance to use caring, coercive approaches, such as assisted outpatient treatment. A person suffering from paranoid schizophrenia with a history of multiple hospitalizations for being dangerous and a reluctance to abide by outpatient treatment is a perfect example of someone who would benefit from these approaches. We must balance individual rights and freedom with policies aimed at caring coercion. Our responsibility to each other and our respect for personal rights lie at the center of our social and moral choices as Americans.

The Treatment Advocacy Center is to be commended for its sustained advocacy on behalf of the most vulnerable mentally ill patients who lack the insight to seek and continue effective care and benefit from assisted outpatient treatment.

Shari L. Steinberg, New York:

My 41-year-old brother has suffered from serious mental illness since he was 15. At times, his behavior has become sufficiently threatening or dangerous to require involuntary hospitalization. Like many others with this disease, he doesn't believe that he is ill (a neurological deficit known as anosognosia) and therefore refuses to voluntarily comply with treatment or to take medication, even though it has proven remarkably effective. As a result, my smart, funny and talented brother has spent much of the past 25 years homeless, jobless and delusional. I can safely say to the civil libertarians that this isn't the life he would have chosen for himself; it was chosen for him by his untreated illness.

Before Kendra's Law, there was nothing my family could do to force him to obtain treatment. Although the law isn't a panacea and the mental health system is a disgrace, being forced to stay in treatment is the only chance he has of resurrecting his life.

Michael Fitzpatrick, Executive Director, National Alliance on Mental Illness:

Using the term "force" to describe state laws authorizing court-ordered treatment overlooks the point about what these laws are intended to accomplish. Most people with serious mental illnesses are able to make informed decisions about treatment. In a minority of cases, mental illness negatively affects insight and ability to recognize the need for treatment. The greatest risk is to the individuals themselves.

A New York State Office of Mental Health report shows that the impact of Kendra's Law has been positive in reducing hospitalizations, arrests, homelessness and other consequences from lack of treatment. And most people treated under Kendra's Law say it has helped them.

When narrowly crafted and sufficiently protective of civil liberties, laws authorizing court-ordered outpatient treatment can be both humane and beneficial.

Top Policymakers Support AOT for New Mexico

New Mexico is one of only 8 states without an assisted outpatient treatment (AOT) law. That means someone who is too ill to make an informed treatment decision must be left untreated until they are in a crisis, posing a “likelihood of serious harm to themselves or others.”

Who supports bringing AOT to New Mexico? Republicans and Democrats alike have rallied behind the effort to update New Mexico's mental illness treatment laws.

• Rep. Joni Gutierrez (D-Las Cruces), who introduced the bill in the House, said that "existing New Mexico law essentially forces people who lack insight into their illness to hit rock bottom before they can be helped ... Forced deterioration is cruel and inhumane."
• U.S. Senator Pete Domenici has strongly endorsed the legislation, pointing out "Some argue that it is wrong to force individuals to undergo treatment against their will. We argue that the tragic consequences are simply too monumental not to require help under certain circumstances. The success rate of the AOT program in other states has been well documented in both research and in practice.”
• Governor Bill Richardson held a news conference to endorse the measure, saying "We need this law to prevent events like the tragic murders in Albuquerque last summer. We have to do everything we can to prevent this from happening to another family, another police officer, or another community, ever again.” [Read more about the news conference.]
• Albuquerque Mayor Martin Chávez is a strong supporter, noting that 20 percent of the 55 homicides in Albuquerque in 2005 were related to mental illness.
• The bill is supported by the state and local chapters of the National Alliance for the Mentally Ill (NAMI).

GET THE FACTS

What is assisted outpatient treatment?
Why does New Mexico need AOT?
How is it working in other states that are using it?
Why do some people refuse treatment for severe mental illnesses?

Among other things, assisted outpatient treatment:

• Reduces homelessness, psychiatric hospitalizations, arrests, incarceration, and harmful behavior, and improves treatment compliance
• Reduces caregiver strain
• Is retroactively endorsed by participants

Some individuals and organizations have raised concerns about assisted outpatient treatment. Most of these fears are based on misinformation or misunderstanding. Educate yourself about the myths surrounding assisted outpatient treatment.

Needs Treatment … But Gone Missing

Cindy Shannon, 41, is schizophrenic and is on three types of medications. … "I'm just worried about her," Terri Shannon said. "She usually calls. I'm just surprised she hasn't called. I know she doesn't know she's been gone several days. … Terri Shannon said her sister might look unkempt by now and most likely would be talking to herself or she could be panhandling for change or food. … "She's not violent," Terri Shannon said. She worries that people might hurt her sister or that her sister might become a victim of a hit-and-run driver. [San Gabriel Valley Tribune, Jan 12, 2006]

When a family member is missing, time seems to stand still.

We hear too many stories about people with severe mental illnesses who disappear, leaving their family members mired in feelings of panic, worry, helplessness and hopelessness, fear that the police will not find their loved one... and fear that they will find them, after it is too late. Just this month, we’ve seen stories from across the country, like California (they found a missing woman’s clothes, but haven’t yet found her) and Oklahoma (an unhappy ending).

WHY?? In most of these cases, the missing person is unaware that they are sick. They may believe that they are on the run from the CIA or the mafia. This phenomenon — called anosognosia — affects the majority (55 percent) of those not receiving treatment for severe mental illnesses. You cannot convince someone with anosognosia that that they are sick because they fully believe their delusion. In many cases, the only way to get someone with anosognosia into treatment is via a court order.

WHAT CAN I DO?? Because people with anosognosia who are missing are often times constantly on the move, this presents an additional legal challenge to families trying to get their loved one committed — each state has a very specific law in regard to assisted treatment or involuntary commitment. That can make it especially hard on families who are trying to navigate a law they don't know in a state where they don't live.

What can you do if someone you love is missing?

• Read some real-world advice from a family that has been there …
• Contact the Center for Missing Adults
• Connect with others in similar situations (try the great message boards on www.schizophrenia.com or your local chapter of NAMI)

Support builds for NJ reform

“For New Jersey's mental-health reform to be truly comprehensive, we must reach those individuals who fall between the cracks,” notes Phil Lubitz, Director of Advocacy Programs for the New Jersey chapter of NAMI in a letter to the editor this week in the Philadelphia Inquirer.

New Jersey is one of only 8 states without the option for assisted outpatient treatment (AOT) – support from power players like acting Governor Codey and a recommendation for passage from the task force he created are a hopeful sign. Letters like this are another.