(Dec. 16, 2013) In the year following the Dec. 14 mass killings at Sandy Hook Elementary School, reforms across the country show that public officials might just be getting serious about addressing the nation’s broken mental health system. 

Last week, the White House announced that it will devote $100 million to increasing access to “mental health services.”

Later in the week Congressman Tim Murphy (R-PA) introduced the “Helping Families in Mental Health Crisis Act,” which aims to provide help to the most severely ill patients and their families. The proposed changes include exemptions to the HIPAA privacy rule, funding for mandatory outpatient treatment programs and clarification of standards that allow involuntary outpatient and treatment.

Earlier in November, the mental health community cheered when the Obama administration announced regulations that help make mental health parity a reality. Under the Affordable Care Act private insurers will now be required to provide coverage for mental illness equal to what they provide for physical illnesses.

At the state level, nearly a dozen state legislatures passed or improved their laws that determine who receives court-ordered treatment for symptoms of severe mental illness.  In the same period, thirty-six states and the District of Columbia increased funding for mental health.

We’ve seen a new and real public and political resolve to address the issues that involve people with serious mental illness, and the resulting breakthroughs will help lower barriers to treatment for severe mental illness, but many remain.

A half-century of abandonment and neglect will not be reversed by a single banner year (“USA has made slight progress on mental health since Newtown,” USA Today).  Help us keep the momentum going:

• Become an advocate.
• Donate today.
• Ask your representatives to support "Helping Families in Mental Health Crisis Act." 

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(Dec. 13, 2013) I vaguely remember lying awake that first night in a large room with maybe twenty beds occupied by other patients. Weird thoughts and fantasies raced through my brain as I tried to reconcile events and apparent reality with my recent grasp of what I had thought “real.” I don’t know how many days I stayed in this big room.

Over the next two and a half months, my feelings about being in this place would evolve. Initially I felt trapped in a strange and sinister place. I would later come to enjoy fellow residents, both patients and staff, and the freedom from stress-causing responsibilities, tasks or expectations. I adjusted to this strange new environment quickly.

We would meet with our psychiatrists rarely--perhaps once a week.  I remember my psychiatrist as being quick to smile, soft-spoken and kindly. He would try very hard to get me to clearly explain what was going on in my mind, what I might have been thinking while doing the things that had gotten me there in the hospital and that sort of thing. It was initially very difficult to answer him.

There were many patients in the hospital near my age. Often when alone with other patients one would say to me, “I’d never tell my Doctor this but…” 

I would eventually realize and accept that one only gets out of therapy what one puts into it. If I wasn’t open and honest with my therapist, he couldn’t help. I’m thinking, though, that I only got good at committing to sessions as the people I was dealing with seemed to regard me more as a person to work with and with whom to engage in two-way communication rather than as a defective object.

When my planned series of treatments were over, they started making plans for my release. The prospect of returning to the world was scary. Were my mental problems over? How would I cope with everyday stress, schoolwork and such? How would my friends and schoolmates treat me after I had been in Middletown? On the other hand, I still had hopes of a decent future, though my prospects had been severely damaged and I wanted to get on with my life.

Joseph Bowers
Author of Life Under a Cloud: The Story of a Schizophrenic

Last  week we published Part 1, “My First Psychotic Episode.”
Purchase a copy of the book here.

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(Dec. 12, 2013) Rep. Tim Murphy (R-PA) is to be strongly commended for taking leadership on federal problems regarding the treatment of individuals with serious mental illnesses.

This is an issue on which federal and state leadership has been in short supply. Rep. Murphy, a psychologist by training, has approached the issue in a systematic and thoughtful manner, focusing specifically on the parts of the problem which have federal origins.

Earlier in 2013, following the Newtown tragedy, the Subcommittee on Oversight and Investigation, of which he is the chairman, held hearings on these problems. On the role of the Substance Abuse and Mental Health Services Administration (SAMHSA), Rep. Murphy noted:

One lesson we must immediately draw from the Newtown tragedy is that we need to make it our priority to get those with serious mental illnesses, who are not presently being treated into sound, evidence-based treatments…[Such treatment] can reduce the risk of violent behavior fifteen-fold in persons with serious mental illness…SAMHSA has not made the treatment of the seriously mentally ill a priority, in fact, I’m afraid serious mental illness such as schizophrenia and bipolar disorder may not be a concern at all to SAMHSA…It’s as if SAMHSA doesn’t believe serious mental illness exists.

The legislation proposed by Rep. Murphy deserves bipartisan support. The problems it addresses are not Democratic or Republican problems, but rather everybody’s problems. The proposed legislation accomplishes the following:

• Requires states to authorize assisted outpatient treatment (AOT) in order to receive Community Mental Health Service Block Grant funds.
• Allocates $15 million for a federal assisted outpatient treatment (AOT) block grant program funding up to 50 grants per year for new, local AOT programs.
• Carves out an exemption in HIPAA that permits a “caregiver” to receive protected health information when a mental health care provider reasonably believes disclosure to the caregiver is necessary to protect the health, safety or welfare of the patient or the safety of another. (The definition of “caregiver” includes immediate family members.)
• Establishes a new National Mental Health Policy Laboratory in the Department of Health and Human Services
• Prevents federally funded “Protection and Advocacy” organizations from engaging in lobbying activities and counseling individuals on ““refusing medical treatment or acting against wishes of a caregiver.”
• Requires the US comptroller general to submit a report to Congress detailing the costs to the federal and state government of imprisoning people with severe mental illness.
• Increases Congressional oversight of SAMHSA programs and seeks improvements to the programs it supports.

The Treatment Advocacy Center (TAC) strongly supports these efforts of Rep. Murphy to improve the care of individuals with serious mental illnesses, and commends him for providing needed federal leadership in this area.

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(Dec. 11, 2013) In the year following the Dec. 14 mass killings at Sandy Hook Elementary School, legislatures in nearly a dozen states showed newfound resolve to reform the public policies that leave their most severely ill residents without the care they need to begin recovering. 

Nearly a dozen state legislatures passed or improved their laws that determine who receives court-ordered treatment for symptoms of severe mental illness in a hospital and/or the community. States making civil commitment reforms in 2013 included:
 

• Nevada – which became the 45th state to allow court-ordered “assisted outpatient treatment” (AOT) for individuals with severe mental illness who qualify under strict state criteria.
• New York – which strengthened Kendra’s Law, already the nation’s most widely used AOT law authorizing mandatory treatment in the community.
• California – which incentivized counties to use its AOT law – known as Laura’s Law – by clarifying that state mental health funds could be used to pay for it.
• Montana – which broadened its standard for emergency hospitalization for psychiatric crisis.
• Colorado, Hawaii, Indiana, North Dakota, Oregon, Missouri and Texas which enacted other reforms to make treatment possible for more individuals in the population most at risk for consequences of non-treatment, including violence.

“Unfortunately, it often takes a tragedy to tip the balance toward making court-ordered treatment more widely available,” said Doris A. Fuller, executive director. “Some of the bills that passed in 2013 have been under consideration in one form or another for years. What changed with Sandy Hook was that the public demand and official will for them to pass grew.”

Despite the progress in 2013, the Treatment Advocacy Center said the system for providing timely and effective treatment to individuals too ill to seek help remains in tatters.

• Connecticut itself failed to pass a bill to improve its mental illness treatment laws. It remains one of only five states with no provision for court-ordered treatment in the community.
• Half of U.S. states continue to withhold court-ordered outpatient treatment from people with severe untreated mental illness until they have deteriorated to a state of danger or grave disability.
• Public psychiatric beds have been reduced more than 90% while the U.S. population nearly doubled since the 1950s, according to “No Room at the Inn,” the organization’s 2012 study of state hospital bed populations.
• Less than half the U.S. population lives where the most basic methods of diverting people with severe mental illness from the criminal justice system are in use, according to “Prevalence of Mental Health Diversion Practices: A Survey of the States,” the organization’s 2013 report on the use of mental health courts and crisis intervention team policing.
• Law enforcement is under stress from the demand for peace officers to be mental health first-responders, as evidenced by the increasing role of untreated mental illness in officer-involved homicides, according to “Justifiable Homicides: What is the Role of Mental Illness?”
• Individuals with untreated mental illness remain more likely to be jailed than hospitalized in every state, according to “More Mentally Ill Persons in Jails and Prisons,” a state survey co-authored with the National Sheriffs’ Association in 2010.

“Mass killings are merely the most newsworthy of a long list of terrible consequences that befall critically ill individuals and their families when we pursue policies that neglect those who need help the most,” Fuller said. “Removing legal and other barriers to treatment will pay dividends for people living with untreated severe mental illness and their communities. As long as these barriers remain, tragedies in all their many forms and magnitudes will continue to occur daily.” 

(Dec. 10, 2013) Joan Scott is a new widow who sent the following message to the Treatment Advocacy Center in June.

Our son, Douglas, in the spring voluntarily went to Ft. Lauderdale Hospital, where he had been admitted four times before. They sent him to Broward General Hospital in Ft. Lauderdale for evaluation, and he was sent home the same day.

A few weeks later, on April 15, the police took him to the same ER for an emergency psychiatric evaluation. He was sent home again.

On April 17, the police again took him to the ER. This time, he was sent home with a prescription.

Five days later, on April 22, he killed his father – my husband, Norman.

Do you have any suggestions? What can I do to help stop tragedy?

Joan is now working with us to raise awareness of the need for treatment before tragedy. She is advocating for public policies that provide timely and effective treatment for individuals with untreated severe mental illness. She has also has become a faithful Treatment Advocacy Center donor.

“It’s too late for us, but it’s not too late for other families living with a loved one’s untreated mental illness, and the Treatment Advocacy Center is the organization that’s there to help,” she says.

Please join Joan in helping us make treatment possible for more of the people with severe mental illness who are least able to help themselves.

Your gift of any size will help. Please give today by clicking here to make an online donation or to find mail-in instructions.

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(Dec. 9, 2013) Responding to a possible psychiatric crisis, police ended up shooting a Maryland woman last week, according to the Washington Post (“Hyattsville police officer shoots woman in the chest after a mental health call to her home,” Dec. 4).

Officers were trying to calm the woman when she produced a knife, the Post details. In light of the potential threat, an officer tried to subdue her with a Taser and then “fired one round from his weapon.”

Thankfully, the woman is recovering in a local hospital, but confrontations between police and individuals in psychiatric crisis often have even more tragic consequences. At the Treatment Advocacy Center we see stories like this all the time – one of the results of a system that diverts people with severe mental illness from receiving effective treatment and instead places them into the hands of law enforcement.

In Maryland, most of these officers are untrained to handle their roles as front-line mental health workers. Our study, “Prevalence of Mental Health Diversion Practices: A Survey of the States,“ found that only 31% of Maryland’s population is served by crisis intervention teams, units of police officers who are trained to respond more effectively to crises involving mental illness.  

And Maryland has a mental health system that reserves treatment for those who are able to seek it voluntarily. It is one of only five states without an assisted outpatient treatment (AOT) law . At the same time, the standard for court-ordered inpatient treatment in a hospital is exceedingly high.

While the woman’s psychiatric diagnosis is unknown, what is known is that Maryland is consistently failing its population with mental illness. Unless the state modernizes its mental health laws and better trains its police officers to respond to people in the midst of a psychiatric crisis, we will continue to see stories like this.

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(Dec. 6, 2013) My first full-blown psychotic episode began as a series of imaginary conversations with God.

It began with me trying to imagine what it would be like to be God. This progressed to my imagining that God was with me in my mind’s eye telling me what being God was like. At some point I came to believe that He was there talking to me and from there it got progressively worse.

It would sometimes be hard to say if I thought I was talking to God or remembering being God. What He told me about being God was cataclysmic. He described immense amounts of time drawing up plans and designs. He told of entire universes slowly developing intelligent life and complex civilizations. His goal was to create joyful societies living eternally in peace and harmony.  And He always failed.

He could not root out people’s quarrelsome nature and warlike tendencies. Time after time a vast, complex universe would develop only to have man destroy it. There would be nuclear war or some such. It would start on one planet and spread throughout the universe. He told of destructive weapons beyond my imagining.

When I started believing that I was God, I sometimes believed I had made myself human out of loneliness, not wanting to continue being one of a kind.

Neurologists to this day don’t understand how we distinguish between memory and imagination, as they seem to involve the same brain areas and impulses. Many times in my life, I would be unable to make an accurate distinction. It was getting that way now. I was imagining highly complex, structured fantasies and believing them to be memories.

It kept getting harder and harder to push away the fantasies dominating my consciousness to focus on conversation, what a teacher or coach was saying, or homework. I couldn’t shut them down to sleep at night. I became obsessed with them.

I quit sleeping altogether, as the fantasies kept racing through my consciousness more and more complex, faster and faster. At some point I came to believe that I was some combination of God and Jesus, then the creator of the universe himself.

I spent much of my time, both in bed and during the day attempting to live my life “remembering” my many adventures and accomplishments as creator. I didn’t talk about these thoughts to anyone partly because of how I thought they would react and because I was beginning to believe they were real and wanted them to be real.

Eventually it became useless to shut them down or to tell myself it was just fantasy.

Joseph Bowers
Author of Life Under a Cloud: The Story of a Schizophrenic

Next week we will publish Part 2, “My First Time in an Institution.”
Purchase a copy of the book here.

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(Dec. 5, 2013) Outpatient treatment for mental illness reduces arrests, according to still another study (“Effects of outpatient treatment on risk of arrest of adults with serious mental illness and associated costs - psych services - 2013.pdf,” Psychiatric Services, Sept. 2013).

And reducing arrests in the population of citizens with severe mental illness saves taxpayers money.

“We found that high medication possession and receipt of routine outpatient services reduced the risk of arrest…,” write the authors from two universities. “In addition, participants who were arrested after discharge from their index hospitalization used a different, and more costly, mix of services than those who were not arrested.”

The authors said their research added “to a growing body of evidence” that shows outpatient treatment reduces the likelihood of arrest, particularly for misdemeanor crimes. Cost savings occurred even though those who received treatment used more services.

The findings are encouraging news for individuals who recognize they are ill and who adhere to treatment. They also illustrate the personal and social costs of failing to pass and use assisted outpatient treatment (AOT) laws for those who have trouble adhering.

Disinformation from opponents to the contrary, there is no evidence that mandatory treatment is any less effective than voluntary treatment. If outpatient treatment reduces arrest and costs, AOT does, too.

Reserving outpatient treatment only for those well enough to seek it is discriminatory and inhumane. To subtract criminalization from mental illness, an active AOT program for those who aren’t needs to be in the toolbox of every jurisdiction.

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(Dec. 3, 2013) The Substance Abuse and Mental Health Services Administration (SAMHSA), a federal agency charged with improving the quality and availability of mental health services, presented a highly illuminating public seminar yesterday on assisted outpatient treatment (AOT). Held at SAMHSA headquarters in Rockville, Maryland with live webcasting to hundreds of registrants, the event included Treatment Advocacy Center Policy Director Brian Stettin as a panelist.

In the first half of the program, Duke University professors Marvin Swartz and Jeffrey Swanson gave highlights of the many AOT studies that they have conducted in New York and North Carolina, dating back to the late 1990’s. Their findings made a persuasive case that if properly implemented, AOT is a cost effective means to improve outcomes for people with severe mental illness who struggle with treatment adherence.

In the panel presentation that followed, Brian cautioned against misinterpreting Drs. Swartz and Swanson’s findings to mean that AOT was only useful in states with ideal availability of community-based services. The panel also featured Dr. Stephanie Le Melle, Co-Director of Public Psychiatry Education at Columbia University and the New York State Psychiatric Institute, who spoke of the positive results she has had in treating patients under AOT, and Chaku Mathai, a peer advocate and longtime AOT opponent.

Archived video of the four-hour seminar will soon be posted online. As soon as it happens we’ll report it on our Twitter feed and Facebook page.

While we have certainly taken our shots at SAMHSA over the years for inattention to the needs of people with severe mental illness, today we offer only praise for facilitating this critical discussion. In her remarks, SAMHSA Administrator Pamela Hyde promised that yesterday was “only the beginning” of the agency’s plans to keep AOT in the spotlight. Count us in for whatever’s next.

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(Nov. 29, 2013) Being a professional advocate for better mental illness treatment policies and a personal advocate for a loved one with severe mental illness has both drawbacks (a 24/7 “job”) and benefits (I know exactly how the system can and should work for individuals in crisis and their families).

So when I found myself in a hospital emergency room in the middle of the night after my daughter’s hard-won stability of nearly two years faltered this week, I figured I was well-equipped to handle whatever the night brought.

I wasn’t.

Naturally, I knew there would be stern admonishments about protecting my daughter’s privacy under HIPAA (the Health Insurance Portability and Accountability Act of 1996), but I’d heard – and combatted – these admonitions successfully before. In a pinch, I could argue that it was in “the best interest of the individual” for her medical providers to disclose information to me (see our HIPAA at a Glance chart for more on this). In practice, this has rarely been necessary because she is willing to sign an authorization to disclose information to me.

But in this Virginia hospital ER, neither was enough to overcome the HIPAA roadblock. After the standard admonishment about the privacy act, the attending physician added that – because she was a psychiatric patient and experiencing disordered thinking – my daughter wouldn't be allowed to authorize release of her own information either.

“Wait!? So you’re telling me that because you’ve decided my daughter may not be able to make decisions in her best interest right now, you are going to leave all the decisions about what's in her best interests up to her?!? Or to doctors who've never laid eyes on her before?!?”

Exactly.

The House Subcommittee on Oversight and Investigations at the behest of Chair Tim Murphy last spring took testimony on whether HIPAA is getting in the way of treatment of those with the most severe mental illness and other psychiatric conditions.

In this Virginia ER and the hands of this ER physician, it most certainly did.

Members of the Oversight and Investigations subcommittee, under whose purview HIPAA comes, are listed here. If HIPAA has affected the care and recovery of your loved one, let committee members know. The law was intended to help patients, not hamper their effective treatment by excluding the caregivers who are most informed and most invested in their recovery.

Read more about the subcommittee hearing in our blog, “HIPAA: What’s Smoke, What’s Fire.”

DORIS A. FULLER
Executive director

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