Anosognosia and AOT

One of the main reasons that assisted outpatient treatment (AOT) laws such as New York's Kendra's Law and Pennsylvania's proposed SB 251 and HB 2186 are necessary is that up to fifty percent of individuals with schizophrenia and forty percent of those with bipolar disorder suffer from anosognosia, a lack of awareness of their illness that often leads to an individual not accepting treatment.

Recently, NAMI National posted information about anosognosia and requested that the American Psychiatric Association (APA) include anosognosia in the next revision of the DSM-V that will be published in 2012 or 2013.

As stated in this document, anosognosia is a "neurological syndrome that leaves individuals unaware that they are sick," and it has a "biological basis and is caused by damage to the brain." And, as already stated in the DSM-IV-TR (Text Revision version), anosognosia "predisposes the individual to non-compliance with treatment," and "it has been found to be predicative of higher relapse rates, increased number of involuntary hospital admissions, poorer psychosocial functioning, and a poorer course of illness."

Yet, at the public hearings on the Pennsylvania's AOT legislation, opponents of a sensible AOT law did not mention anosognosia at all.

The solution offered by those opposed to AOT for all the individuals who have an untreated severe mental illness who often end up homeless, victimized, or in the revolving door of frequent hospitalizations or incarceration is that we just need to increase services in our state even though Pennsylvania is the second highest in our country in spending for mental health services and programs. However, someone who doesn't believe they have an illness would not seek out or accept even the best services available, so an increase of the quality or quantity of services or programs would not benefit them.

The real answer for those who have a severe mental illness and anosognosia, who would also meet all of the stringent criteria of an assisted outpatient treatment law such as Pennsylvania's proposed SB 251 and HB 2186 is to provide assisted outpatient treatment in the community, a much less restrictive environment than being hospitalized or incarcerated, the latter, jails and prisons, which have now become more frequent than hospitalizations in our state by a ratio of 2:1 according to a report by the Treatment Advocacy Center and the National Sheriffs' Association.

The time has come for a compassionate intervention law in Pennsylvania. If you are interested in joining our effort for the passage of HB 2186 and SB 251 or would just like additional information on assisted outpatient treatment laws, please contact the Treatment Advocacy Center at 703-294-6001/6002.

Right To Be Well

Why do many advocates across Pennsylvania work so hard to see a change to the Mental Health Procedures Act of 1976 through common-sense, compassionate, timely assisted outpatient treatment (AOT) legislation such as HB 2186 and SB 251?

Part of the reason is that by looking at the outcomes and statistics found on the recent study of New York's Kendra's Law, which our AOT legislation is modeled after, we see that it reduces hospitalizations, homelessness, and incarceration.

But I think the most important reason is the impact that untreated mental illness has on the individual with the illness who may lack insight of their illness (a.k.a. anosognosia) and who must wait until they reach a level of "clear and present danger" as required under Pennsylvania's current law and the families who must wait, feeling frustrated and hopeless since they are not able to help until a very dangerous level is reached and treatment is finally provided.

I plan to periodically post real life stories from people who have a diagnosis of mental illness and from the families and friends who love them. The first is a story that was presented at the public hearing on HB 2186 on April 8, 2010, by a mother, Peggy M., whose son was denied timely treatment simply because he was unaware of the need to seek treatment on his own.

When my son Louie was little he was probably like most of your children---he was so cute and really comical and I may be partial but I think he grew up to be very handsome and STILL very comical. Louie’s friends even nicknamed him “Silly Louie”. In high school Louie loved the girls (which there was never a shortage of), he loved sports (which he excelled in), he loved playing guitar and singing (he was good at the guitar but the singing not so great), and he was also EXTREMELY intelligent.

I used to wonder, like a lot of parents, what he would grow up to be. To me he was the full package…he had the looks, the brains and a wonderful personality to go with it. I thought he could grow up to be just about anything he wanted to be. Maybe he would be a doctor, or a lawyer, who knew because the possibilities were endless. Louie went to college and then met his soon to be wife Jennifer and they had two beautiful children, Zane and Zoe. He joined the army and became part of the 82nd airborne division. Louie wanted to make a career out of the army like his uncle in the Delta Force who he respected and looked up to. He was promoted quickly because of his intelligence and he held a position with a high security clearance. But after a knee injury and then surgery he re-injured his knee again in a parachute jump and his military dreams were ended.

They say that if you have an underlying mental illness that has not shown up yet that “stress” can bring it to the surface. I believe that is what happened to Louie. Within a short period of time Louie lost his dream of a military career, his grandfather who he was VERY close to died, and his marriage was on shaky grounds. He started acting bizarre and became very paranoid. The family was very concerned and we asked for help. You see Louie didn’t feel that he was acting any differently and thought “we” were the ones being paranoid.

We knew nothing about mental illness, only because we had no reason to, but we thought we would just tell the doctors what was happening and they would take him to the hospital and make him better. Well we were shocked when they told us he would have to become “dangerous” first before they could help him (if he did not think he needed help). I once even begged and pleaded for help from a particular psychiatrist and he looked me right in the eye and told me, “Your son has a RIGHT to be CRAZY”.

Well today I am here fighting for my sons “RIGHT to be WELL”. I had to watch my son lose everything he had going for him. He lost his wife, his two children that used to adore him before they became frightened of him, he lost his home, his car, his friends, many jobs and he eventually became homeless. His ex-wife and I rode all over the place looking for him and “I”, his own mother, drove right past him… I didn’t even recognize him. You see, he had lost so much weight, he was filthy, and his hair was real long and straggily. Luckily his wife recognized his shirt and that is how we were finally able to find him. While we waited for him to become dangerous I watched him go through periods of delusions. Once he believed he was in the CIA and he would speak in some sort of code and then there was another time when he believed he was an army general from the 1800’s.

So often during these times he would be taken advantage of by people he claimed were his friends. He would become a public nuisance sometimes and I was always worried he would end up in jail for it. Then there was the time I tried to get the whole family together at a restaurant for a special dinner and one of the family members suggested to Louie that he needed help at which time Louie proceeded to storm out of the restaurant yelling at the top of his voice that everyone in the restaurant should listen to him that he was Jesus Christ. The whole family was in tears – not because they were embarrassed but because they saw how out of touch with reality he was. He still thought nothing was wrong with him.

But finally the time did come when Louie was considered dangerous. You see, still thinking he was Jesus, he called my daughter and told her that his wife was running a prostitution ring (another delusion) and that she would have to be “crucified” and he might have to be the one to do it. My daughter called me and my husband and we drove as fast as we could, speeding, to get to our daughter in-law and the kids. We were SO terrified that it might be too late because we kept calling her and calling her to warn her to get out of there, but we couldn’t reach her. We were SO scared—but as it turned out her phone was not working and that is why we couldn’t reach her and she WAS okay….BUT this story could have ended VERY differently. We had to wait for Louie to finally become dangerous enough to get him the help he needed and that could have come at GREAT COST. His wife could have been dead, Louie could have ended up in prison or killed by police, and his kids could have ended up without both their parents. All because of an out-dated law that DOES NOT WORK. Why should someone have to become dangerous before we can step in to help them?

I “DO BELIEVE” people have a right to choose! If someone with a heart disease chooses not to get treatment or someone with diabetes chooses to go without insulin then they have that right----they are making that decision with a sound mind. BUT when you are asking someone who clearly does not realize they are ill, because it is the BRAIN itself that is ill and not working properly, then that is a very different story. My son suffered and still suffers from anosognosia, lack of insight into his own illness. I watched him being tortured by his own awful beliefs about things that “he thought” were happening to him and to people he loved and I still could not convince him he was ill and that these things were not truly happening. As much as I knew they were not true he believed completely that they were true.

I told you earlier how I used to wonder when Louie was young what he would grow up to be----but you know now, all I want for him is to be SAFE and as HAPPY as he can possibly be. They say that early treatment can make such a difference in the final outcome of these illnesses—well Louie didn’t get that early treatment, he was denied that chance. So now Louie lives with us and receives social security benefits. He gets to see his children every now and then when I take him to South Carolina where they live, that is where his ex-wife is from originally. I just feel that ” this law” has ruined the life my son “could have had”. Not his illness, but this law…..it took away his “Right to be Well”.

Update on Pennsylvania Assisted Outpatient Treatment Advocacy Effort

The advocacy effort in Pennsylvania to amend the outdated Mental Health Procedures Act of 1976 through assisted outpatient treatment (AOT) legislation has continued since my last post almost a year ago.

As the lead person of the PA Treatment Law Advocacy Effort in our state, I've decided to re-start this blog site and hope you will become involved in this important discussion on an issue that touches the lives of so many people with severe mental illnesses, such as schizophrenia and bipolar, especially when they have anosognosia or lack of insight and do not seek or remain in treatment. The struggles of those with untreated mental illness also reaches their families and friends who love them but are not able to help because of outdated treatment laws that prevent their loved-ones from receiving timely, effective treatment unless they have reached a level of "clear and present danger to self or others."

Information regarding many of the issues that I mention today and in future posts can be found on the side bar of this page, under "Valuable Resources and Information," including links to the AOT legislation. Currently, there are two proposed AOT bills in Pennsylvania, both a Senate and House bill that are identical.

· SB 251 replaces the previous bill listed on this blog site, SB 226, and both were sponsored by State Senator Stewart Greenleaf. SB 251 currently resides in the Senate Public Health and Welfare Committee.
· HB 2186 was proposed this year by House Representative Mario Scavello and it resides in the House Health and Human Services Committee.

As NAMI (National Alliance on Mental Illness) members know, this national organization supports AOT as stated in their Public Policy Platform, "Court-ordered outpatient treatment should be considered as a less restrictive, more beneficial, and less costly treatment alternative to involuntary inpatient treatment."

The NAMI PA state organization also endorses SB 251 and HB 2186 as well as six NAMI PA Chapters who have each signed individual resolutions in support of this legislation. You can find their resolutions of support on the Treatment Advocacy Center's PA web site on the left column, as well as endorsements for the legislation from various newspapers in our state.

My goal is to post new updates at least once or twice a week. However, even more importantly, I hope to hear from you since the only real way to improve services and treatment for individuals with severe mental illness who often are neglected and do not receive help is by understanding why assisted outpatient treatment is beneficial and advocating together for needed changes.

No funding from pharmaceutical companies

I recently received a comment from someone asking if I received funding from pharmaceutical companies. I receive no funding at all for this advocacy effort.

The Treatment Advocacy Center that has offered their support and advice to change our outdated treatment law in our state does receive funding as a non-profit organization; however, they accept no funding from pharmaceutical companies as stated on their web site:
http://www.treatmentadvocacycenter.org/index.php?option=com_content&task=view&id=21&Itemid=50

"Where does the Treatment Advocacy Center get its funding?
The Treatment Advocacy Center is funded by a host of individual donors and grants. Since its inception, the Treatment Advocacy Center has not accepted funding from pharmaceutical companies or entities involved in the sale, marketing or distribution of such products. This stance is unusual in the mental health advocacy field."

Another preventable death

If you take the time to read the "In The News" and "On TAC Blogs" sections on the Treatment Advocacy Center (TAC) home page, you will be familiar with the many stories of preventable tragedies due to untreated mental illnesses that occur all too frequently around the country.

We have been advocating to change our treatment laws in Pennsylvania so that individuals with a severe mental illness who also lack insight to seek and remain in treatment will be eligible for that help through the proposed assisted outpatient treatment (AOT) legislation, Senate Bill 226. A story that appeared on July 12, 2008 in The Daily Item by Damian Gessel, Life and death in a Snyder County ditch, is another example of a preventable tragedy, the death of a homeless man named James Farrell.

Both Kurt Entsminger, Executive Director of TAC and Estelle Richman, Pennsylvania Secretary of Public Welfare stated in this article that "Pennsylvania should adopt legislation similar to New York's Kendra's Law, which includes court-ordered mental health outpatient treatment provisions for patients who refuse help."

I couldn't agree more. SB 226, which is modeled after Kendra's Law, has already been proposed by State Senator Greenleaf and currently resides in the Pennsylvania Public Health and Welfare Committee that is chaired by State Senator Erickson. All we need now is to for Senator Erickson to bring this bill out of committee to vote, and then Pennsylvania will become a state like New York that will lower the statistics for homelessness, incarceration and victimization of those whose lives are often devastated by untreated mental illness.

Read Insanity Offense...for a better understanding

I finished reading E. Fuller Torrey's The Insanity Offense this weekend and would highly recommend it to anyone who wants to understand the history of deinstitutionalization and the effect it has had on people with severe mental illnesses and the families and friends who love them.

Dr. Torrey gives examples of actual cases of individuals whose untreated mental illness led to devastating consequences from three states in our country, although any state could have been chosen. Sadly, the good intentions of closing down our state hospitals and providing treatment in the community wasn't followed through with intensive services and supports as originally planned and so many have suffered the consequences.

We have a current example from our own state of can happen when a hospital that provided intensive support closes as described in the article from The Pittsburgh Tribune-Review, State probes ex-Mayview patients deaths, arrests on June 22, 2008.

Living in the community when you have been accustomed to having the type of intensive support that a hospital provides requires very similar intensive support, such as an ACT (assertive community treatment) program can provide, if the person is willing to remain in treatment and continue prescribed medications. Members of the team can visit a client several times a day when they first are discharged and can continue visits as often as needed. ACT also provides 24-hour crisis intervention.

However, it is voluntary, and without an effective AOT (assisted outpatient treatment) law for someone who lacks the insight that prescribed medications may be necessary, a discharge from a hospital can turn in to a revolving door of crisis situations and repeated hospitalizations, or worse, incarcerations or victimization.

Before any more state hospitals close, hopefully very careful considerations will be given to how many hospital beds are required to provide intensive services for individuals who need that level of support as well as what type of living accommodations and services need to be provided.

Also, read Dr. Torrey's book for his suggestions on what we need to do now that deinstituionalization has changed the way those with severe mental illness receive treatment. There's still hope, but we need to make those changes soon, for the sake of everyone.

We're all responsible

I received a comment to my previous post yesterday which made me realize that there still continues to exist so much misunderstanding about assisted outpatient treatment laws.

The comment I received was: "Yay. More dead psych patients to come, thanks to you and yours http://youtube.com/watch?v=dx11j0kcLn4. Hard for anyone to remain in treatment when they're killing their patients left and right."

The video is certainly a very sad, tragic story of loss of life due to neglect of the hospital staff and they should be held responsible for not providing the help that woman obviously needed. However, assisted outpatient treatment laws, such as Senate Bill 226, means that a person is provided treatment in the community where they live and they are given supportive services by the mental health agency or provider who is required by the court order to ensure the timely, consistent treatment, including medications, is provided for an individual wherever they reside.

Hospital emergency rooms aren't the only places where people are ignored. I think it is also terrible that, as a society, we walk by homeless people with a mental illness every day and ignore them as they sleep on the streets. They are often victimized (robbed, molested, left out in the elements) and sometimes commit crimes that then put them in jail or prison. People with severe mental illnesses who lack insight to seek treatment are ignored by our mental health system all the time, unless they are engaged in a dangerous activity. Even families who try to help their loved ones who are exhibiting psychotic symptoms and who desperately need help have to wait until there is a "clear and present danger" to report in our state.

So, yes, that video was a stark example of the neglect of the hospital staff and they should lose their jobs. But what consequences should the mental health administrators and agencies face because, on a daily basis, large numbers of people with a mental illness are neglected, too. You don't see them on a video in a psychiatric hospital, but just wander through the streets, visit some jails, or maybe go to a NAMI support group and listen to the families who are unable to help their loved ones obtain consistent treatment because they haven't yet done something to fulfill the "danger to self or others" that is required by law. Or visit the Treatment Advocacy Center's "Preventable Tragedies" site to see how many people we turn our backs on day after day, year after year.

In the end, we're all responsible for this negligence. Requiring our state law to allow for timely, compassionate assisted outpatient treatment would show that we understand and want to help those who lack insight to seek and remain in treatment. Passing Senate Bill 226 would show that we care...it is the responsible thing to do.

NAMI National Convention and AOT Letter to the Editor

I returned from the NAMI National Convention yesterday and was reflecting on the many workshops I attended and the connections I was able to make in order to gain further information about the two advocacy efforts I spoke about as one of the presenters at a workshop on advocacy, assertive community treatment (ACT) and assisted outpatient treatment (AOT).

I learned from a phone message from my brother that a letter to the editor that I had written a couple of weeks ago was published in the Bucks County Courier Times on Monday, June 16, "New law would ensure that the mentally ill get needed Help" (I hadn't chosen that title). I was glad to see that the information regarding our advocacy efforts for SB 226 appeared in our local paper. Please send any comments you might want to share to this newspaper.

Although I spoke with many people at the convention who were very supportive of both ACT and AOT, I did meet with some who shared their concerns about how AOT laws are implemented. After listening to their comments, I realize that there is still a lot of misunderstanding about issues such as who would be affected by AOT (my answer: a very small minority, less than 1% of the people with a severe mental illness and history of hospitalizations or incarcerations or violence) and that there are still some people who do not believe that lack of insight or anosognosia exists and stands in the way of people seeking treatment on their own (my answer: to read Dr. Xavier Amador's book, I Am Not Sick I Don't Need Help! as well as the briefing paper on the Treatment Advocacy Center's web site which explains how lack of insight impairs someone's ability to seek and remain in treatment.)

It is still my hope that, over time, more understanding about the benefits of AOT for those whose lives are often devastated by lack of treatment will enable more states, including my own, to pass these life-saving laws.

Advocating for change to mental health laws

As I've been preparing for a presentation at the NAMI National Convention, I've been thinking about the reasons I am involved in advocating for a change to our mental health treatment laws.

My personal involvement with accessing treatment for my family member who has schizoaffective disorder and lacked the insight of understanding that she had a treatable illness is what first drew me to learning about how our mental health system, governed by our Mental Health Procedures Act, operates. After meeting many parents who also shared their stories of the difficulties of accessing timely treatment, it reaffirmed the need to become actively involved in changing our laws that put family members on hold, waiting for a clear and present dangerous situation to first occur before needed help was provided.

Research shows that untreated mental illness is the cause of frequent hospitalizations, homelessness, and incarcerations. An article that appeared in the Wall Street Journal, Compassion, Compulsion and the Mentally Ill, by Dr. E. Fuller Torrey, states the statistics from a recent study on homicides committed by individuals with severe mental illness in Indiana which shows that, "homicides were preventable, since the perpetrators in most cases were not being treated."

Assisted outpatient treatment laws have been shown to make a difference, as the outcomes from New York's Kendra's Law prove. And so, besides my own personal reasons and those of other families, the research studies and outcomes from mental health treatment laws that are effective are all the reasons that I continue to advocate for changes to the laws in my state.

The Effects of Untreated Mental Illness

Over the last few days, three articles, two from newspapers in Pennsylvania and one from California, appeared in newspapers on the issue of the effects of untreated mental illness.

One appeared in the Bucks County Courier Times and was written by a student, Lisa Clattenburg, from the college where I work, All alone: Who will help the families of the mentally ill?. I've never met Lisa, but she raises points that many families and friends of someone with a mental illness and a lack of insight to remain in treatment often wonder how to resolve regarding the treatment laws that do not provide treatment until someone is a danger to themselves or others.

Lisa states, "These laws make it very difficult for family members to get needed help for these patients. Unless they are suicidal or homicidal, it is almost impossible to force them to get treatment. It has gone from one extreme to another. We should come up with an 'in between' so that patients who suffer from this illness can receive the help they need and deserve. "

The second article, from the Philadelphia Daily News was written by Elmer Smith: The cycle for mentally ill homeless must end. He writes about people with untreated mental illness, "whose homelessness results from untreated mental illnesses, [and] find themselves suspended between periods of life on the streets and enforced stays in homeless shelters, mental-health institutions and jail cells."

But even when housing is available, if someone who has been prescribed medications does not take them because they lack the insight to remain in treatment, then all of the programs, services, and housing options available will not help them.

The third article, State's shameful neglect of mental illness, by John Diaz appeared in the paper today. Although California has passed an effective treatment law, it has not been implemented across the state. The result is one that, "divides families, contributes to the crowding in our prisons and jails, explains why so many people are living on the streets, and causes more pain and suffering that can be calculated by any government statistic."

Providing timely, compassionate treatment is the answer and the results of Kendra's Law in New York offer a solution on how to solve these problems. In PA, once the proposed assisted outpatient treatment bill, SB 226, is passed, it will benefit many people including those with untreated mental illnesses and the family and friends who love them.

NAMI National Convention and link to MTV True Life Series

The NAMI National Convention will be held in just three weeks and I am thankful for the opportunity to be one of the presenters, along with two other advocates from Illinois and California, and the new Executive Director of the Treatment Advocacy Center, Kurt Entsminger, to talk about the advocacy efforts that I have been involved in since I first became a member of NAMI in January 2000.

I was fortunate to be a part of a very important advocacy effort, along with Charles Bechtel and Ted Burchess, that brought the first Program of Assertive Community Treatment (know as ACT or PACT) to Pennsylvania, which is located in Bucks County . As the Co-Chair of our PA Treatment Law Advocacy Coalition, along with Taylor Andrews, Esq., I will have the opportunity to talk about our current advocacy effort to change our state's assisted outpatient treatment (AOT) law through State Senator Greenleaf's proposed SB 226.

Following is information about the presentation that I will a part of, as well as information about the Crisis Intervention Training (CIT) presentation, which includes a good friend, Wendy Stewart, Executive Director NAMI Cambria County, who successfully started the first CIT in Johnstown, PA. We are fortunate that here in Bucks County, Agnes McFarlane is currently heading an effort to bring CIT to our county.

Lastly, I've also included a link to a MTV presentation by young people who have a diagnosis of schizophrenia or schizoaffective disorder and their families who share their personal stories.

From NAMI National Convention 2008 Brochure:

Grand Ballroom E Workshop 3-H One Person Can Make a Difference: Learn to be a Catalyst for Change and Treatment

In this workshop, three accomplished advocates will give you a blueprint for fostering change and creating treatment in your community. The three winners of the 2007 Advocacy Award from the Treatment Advocacy Center will explain how they turned their personal desires to help loved ones with untreated mental illness into powerful grassroots efforts for the reform of laws, programs, and policies denying effective treatment in their states and counties. These three family members relate not only what they have done, but the strategies and tactics behind their successful advocacy.

❖ Karen Gherardini, mental health treatment advocate, Shattuc, IL❖ Jeanette Castello, mental health treatment advocate, Newtown, PA❖ Janice Deloof, mental health treatment advocate, Fullerton, CA❖ Moderator: Kurt Entsminger, executive director, Treatment Advocacy Center, Arlington, VA

9:45am – 12:30pm SPECIAL SESSION Salon 3 CIT – A MODEL FOR ALL COMMUNITIES

CIT programs have been established in hundred of communities in the U.S. and internationally. These innovative collaborations between law enforcement and mental health systems have saved lives and fostered linkages with the mental health system for people who require treatment, not incarceration. This special session on CIT will feature leaders of two cutting-edge and diverse CIT programs – one in a large city, the other in a rural multicounty region. The session will also feature a question-and-answer session with Major Sam Cochran, founder andcoordinator of the first CIT program in Memphis.

❖ Jeffrey Murphy, lieutenant, Chicago Police Department, Chicago, IL❖ Suzanne Andriukaitis, executive director, NAMI Greater Chicago, Chicago, IL❖ Wendy Stewart, executive director, NAMI Cambria County, Johnstown, PA❖ Officer Daniel Marguccio, police coordinator, Laurel Highlands Region Police Crisis Intervention Team, Johnstown Police Department, Johnstown, PA❖ Moderator: Major Sam Cochran, coordinator, Crisis Intervention Team, Memphis Police Department, Memphis, TN
http://www.nami.org/Template.cfm?Section=CIT&Template=/ContentManagement/ContentDisplay.cfm&ContentID=62298


If you haven't seen the MTV episodes on young adults who have a diagnosis of either schizophrenia or schizoaffective disorder and their families you can find it on NAMI's home page: http://www.nami.org/ or at
http://www.nami.org/template.cfm?template=/ContentManagement/ContentDisplay.cfm&ContentID=62365&lstid=275

Inpatient and Outpatient Treatment

The presentation from Mark Heyrman: "Why the Legal Standard for Involuntary Commitment to Mental Hospitals Doesn't Matter" is worth an hour of your time to listen to a very short but comprehensive history of involuntary commitment laws in the United States since the 1950's. Mark Heyrman is Clinical Professor of Law at the University of Chicago Law School and his talk was recorded on November 6, 2007 as part of the Chicago's Best Ideas Series.

Unfortunately though, he limits his talk to inpatient involuntary commitment treatment in hospitals and the difficulties faced by hospitals, both state and private, due to cost of treatment for those with a severe mental illness, as well as the reduction in the availability of psychiatric hospital beds, which have decreased from 55,000 in 1952 to approximately 1,400 now (or a reduction of approximately 95% in all 50 states). He does not mention the positive effects that assisted outpatient treatment (AOT) laws, such as the outcomes from New York's Kendra's Law. And obviously, since it had not yet been released at the time of his talk, he did not refer to the outcomes from the Treatment Advocacy Center's report, "The Shortage of Public Hospital Beds for Mentally Ill Persons."

I do not agree with all of Prof. Heyman's solutions because he does not mention the effects of lack of insight or anosognosia for those who receive (or I should say do not request or accept) mental health services outside of a hospital. His suggestion that increased intensive services in the community alone will solve the problems that the reduction of beds available for those with a severe mental illness has caused does not address the difficulty of providing services to individuals who do not think they have an illness, due to lack of insight.

One of the most important experts on anosognosia, Dr. Xavior Amador, provides a method called LEAP (which stands for listen, empathize, agree, and partner) in his book, "I Am Not Sick, I Don't Need Help!" However, Dr. Amador has also stated and given me permission to post on my blog site that, "AOT is a vital tool that we need to help people who have anosognosia, or lack of insight, for mental illness."

Only a very small minority of people with a severe mental illness and lack of insight need this AOT "tool" that provides court-ordered assisted outpatient treatment, but they are often the very individuals whose lives are devastated when treatment isn't provided. Sensible treatment laws, like NY's Kendra's Law, and PA's proposed AOT law, SB 226, will ensure that those individuals are given the compassionate, timely treatment they deserve.

Avoiding Victimization

I started advocated several years ago for changes to the Mental Health Procedures Act in our state that currently requires someone to be a danger to self or others before treatment is provided. Having experienced the heartache and tragedy of watching my family member go through numerous crisis situations followed by involuntary hospitalizations, I knew something had to change.

From the perspective of law enforcement, who often become involved when someone with a mental illness is in crisis, Dr. Laurence Miller has written an article that appeared on PoliceOne.Com news on May 12, 2008, P1 Exclusive Series: Dealing with mentally ill citizens on patrol.

The part that hit home for me and my main reason for my assisted outpatient treatment (AOT) advocacy efforts is the last sentence in the first paragraph under "Law enforcement response to the mentally ill," which states "However, the mentally ill are far more often the victims of crime than the perpetrators, and are three times as likely to be crime victims as ordinary citizens."

I think that people who have symptoms of severe mental illness and are not able to remain in treatment because they lack the insight to understand the need to take prescribed medications fall into the category of being "three times as likely to be crime victims." Helping someone remain in treatment, even if that requires court ordered assisted outpatient treatment, can help individuals avoid dangerous situations that can lead to victimization.

Involuntary commitment laws based on need for help

I read an article today that appeared in the BN Village, Mentally ill man dies a lonely death on L.A.'s streets . Another very sad, tragic, preventable event occurred in California because someone, Troy Green, who was in desperate need of treatment for his mental illness, did not receive help.

As stated in the article, "Across the country, Los Angeles County sheriff's homicide Det. Robert Harris was also not surprised when he learned the details of his newest case. He said he has seen similar cases again and again: mentally ill people, adrift in gang-populated neighborhoods, falling victim to homicide."

A friend of mine has been trying desperately to keep her daughter safe and able to receive consistent treatment. But, each time her daughter is released from a short stay in a hospital (and one time from a jail), her daughter wanders off and puts herself in a precarious situation that could potentially cause her harm. My friend doesn't want to see her daughter, who has a mental illness and wanders off and sleeps in parks at night, become one of the homeless statistics. But the mental health system only responds when she is a "clear and present danger to herself or someone else." A history of an individuals repeated hospitalizations and/or incarcerations is not considered if it is beyond the previous 30 days for an involuntary commitment.

The next time you see someone who is living on the streets, remember that they may have had a family that tried to get them help but that our mental health system didn't provide that assistance, because, by our outdated treatment laws, they weren't required to help.

Troy Green's sister, Lillian Green, "condemns a system that she said left her with few options to keep her brother safe." She further states, "she understands involuntary commitment laws. But, she says, "It shouldn't be that way. It should be based on whether they need help."

We need to change our commitment laws in all of our states to ones that provide timely help for those with severe mental illnesses who are not able to ask for that help themselves. A decent society would do no less.

Idaho passes important bill

As recently posted on the Treatment Advocacy Center's web site, Idaho has passed legislation that will help those with a severe mental illness who are often most vulnerable. The law will go into effect in July 2008.

I take heart and encouragement from knowing that common-sense approaches to helping those with severe mental illness who lack the insight to seek and remain in treatment do exist, and, that through education and advocacy, states such as Pennsylvania that require "clear and present danger to self or others" can also change their outdated laws.

I know that my friend whose daughter has been hospitalized four times and incarcerated once over the last six months hopes that we will soon have such a supportive, timely law in this state. Families who need to wait for their loved ones to receive consistent, sustained inpatient and/or outpatient treatment for their loves ones worry that their family members will not survive the constant months of cycling in and out between crisis situations and then hospitals and/or jails. I think of this form of mental health services as following the Russian roulette model of treatment. If you're lucky, your loved one will survive this trial period that is used to prove that someone is really, truly, undeniably in need of sustained treatment.

My friend's daughter was recently missing (again) and thankfully was found two days ago by a caring police officer who observed that she was in need of some help. The officer kindly took the time to take her to a hospital and was able to ensure that she could receive the treatment she needed through an involuntary commitment. Hopefully, the scary game of Russian roulette has ended and my friend's daughter now qualifies for sustained intervention.

SB 226, which would have allowed my friend's daughter the opportunity to access timely sustained assisted outpatient treatment after her second hospitalization or time spent in jail, could have helped to cut her time spent in hospitals and jails over the last six months in half.

If Idaho can take this common sense approach to treatment, certainly we can do the same in Pennsylvania.

Importance of inpatient and outpatient services

As Virginia puts into place the mental health bills that were recently passed, questions continue to arise as to the effects of more inpatient hospitalizations due to a change in their commitment criteria that now allows that there "exists a substantial likelihood” a person might cause serious physical harm to themselves or others as a result of mental illness for an involuntary commitment to be issued. However, there was no increase for the funds for state hospitals.

Meanwhile, their laws affecting outpatient treatment weren't raised to the standards of Kendra's Law, as their proposed SB 177 would have accomplished and that assisted outpatient treatment (AOT) model has outcomes that include a reduction in hospitalizations and incarcerations.

As stated by Robert Johnson, executive director of the Region 10 Community Service Board in Charlottesville in the article Number Crunch in The News Virginian, "“There really hasn’t been an increase [in funds for state hospitals] to meet our needs,” Johnson said. “And that’s because of a policy that [patients] should be integrated back into the community as soon as possible. And it’s a great policy. The problem is, when you do need a bed, it may not be there anymore.”

Virginia govenor signs bill

The tragedy of the Virgina Tech shootings that occurred a year ago has drawn attention to the potential effects of untreated mental illness and the need for timely, sustained follow-up support for someone in need of treatment.

Although so much more should have been done to make the needed appropriate changes in Virginia's mental health system, some bills were signed into law on the anniversary of this tragedy by that state's Governor, as mentioned in the following article, Kaine signs bills aimed at mental health reform.

Louisiana's AOT Bill - Nicola's Law

As I continue to advocate for changes to our outdated mental health treatment laws in Pennsylvania that require someone to be a "clear and present danger to self or others" before treatment is provided to someone who lacks the insight to request treatment on their own, I realize that people in states all around the country are facing the the same problems with laws in their states that also need to be changed to help those who are not receiving the timely treatment they deserve.

As mentioned in an article posted on klab.com News Channel 5 in Alexandria, LA:

"The mental health care package announced by the Governor, Secretary Levine, and legislators today in New Orleans includes four bills:"

In my opinion, the most important of these is:

"'Nicola’s Law' - Involuntary Outpatient Treatment Allowing the use of involuntary outpatient placement enables mental health experts and courts to ensure compliance with treatment protocols for those who have a behavioral illness, who have a violent history, who are likely to become violent, and who also refuse treatment or do not comply with their treatment plan. 'Nicola’s Law' is modeled after similar legislation in New York, 'Kendra’s Law,' which has been supported by behavioral health advocates and experts throughout the nation. More than 40 states have now established similar laws. After Kendra’s Law was passed in New York, incarcerations fell from 23 percent to three percent, psychiatric hospitalizations decreased from 97 percent to 22 percent, and homelessness fell from 19 percent to five percent."

PA's Senate Bill 226 also follows Kendra's Law, and when passed, will be expected to show the same reductions in hospitalizations, homelessness, and incarcerations.

Shortage of psychiatric beds

A must read:

The Treatment Advocacy Center recently posted a report on their web site on the Shortage of Public Hospital Beds: http://www.treatmentadvocacycenter.org/Reportbedshortage.htm. Pennsylvania is listed under the category of "Severe bed shortage (12-19 beds per 100,000 population)," with just 18.9 beds per 100,000 population.

Fifteen experts on psychiatric care in the United States were asked "to assume the existence of good outpatient programs and the availability of outpatient commitment and told them that they would not be publicly identified."
As stated in the report, "The replies received were surprisingly consistent. Almost all 15 experts estimated a need for 50 (range 40 to 60) public psychiatric beds per 100,000 population for hospitalization for individuals with serious psychiatric disorders. Since it assumes the availability of good outpatient programs and outpatient commitment, this is a minimum number."
As the chart shows, Pennsylvania currently has 2,349 beds, and using the formula above of 50 per 100,000, we should have 6,182 beds, or an increase of 3,833.
I'm not certain why our state continues to down size and close our state hospitals. Maybe its time to find out before even more beds are lost.
One of the six solutions offered is "Implementing and using PACT [a.k.a. ACT] programs and assisted outpatient treatment (AOT) in every state; both programs have been proven to decrease the need for hospitalization." Thankfully, our state OMHSAS is increasing the number of ACTs in our state and will soon be publishing PA ACT Standards which will ensure fidelity to the model.
We now need to work even harder to see our AOT bill, SB 226 pass. With your help, we can.

(An article on Poynteronline was also posted on this week on this vitally important issue)

Mental Health Parity Questioned

Do you ever read The Trouble With Spikol blog? The person who wrote the article that Liz Spikol posted questions the benefits of Mental Health Parity bills, because of having to equate mental illness on the same level as physical illness.

This post on March 14th grabbed my attention because I believe it is the reason behind why some people do not believe that lack of insight of an illness and need to seek treatment exists for some individuals with mental illnesses such as schizophrenia, schizo-affective, and biopolar disorder. This belief is also why some people are against assisted outpatient treatment (AOT) bills.

I understand why people want to be in control of any situation, including their medical needs, and that through their own efforts they can make their symptoms better, because that is empowering, which is at the heart of the consumer recovery movement. Fortunately, for the majority of individuals with a mental illness, that is true.

But I don't think that those individuals may realize the burden they put on others whose mental illness requires prescribed medications (and other supportive services and therapy) because there really is a chemical imbalance in their brain and that the untreated symptoms are not so easily managed, regardless of how strong or empowered they are. Needing to take medications for a biological brain disease should never be considered a weakness or a character flaw - no one ever thinks that of someone who needs insulin for diabetes.

NAMI has worked very hard to see both a Senate and House Mental Health Parity bill pass, and it is hard to imagine that anyone would question the wisdom of allowing individuals with mental illness the ability to access medical treatment just as anyone else with any other illness or disease can.