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.

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.

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.

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.

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.”

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.

California's Laura's Law

When another assisted outpatient treatment (AOT) bill, Laura's Law, was passed in California in 2002, it didn't include a provision that would require every county to enact it, only those that chose to do so. Advocates in that state are now working to see this legislation in place so that those with severe mental illness and lack of insight will receive the timely treatment they deserve.

One of the advocates made this observation in a post called, Laura's Law--what is it and should we enact it?:

"It seems that it is a very reasonable bill. People who are deteriorating can engage in violent acts towards themselves and/or others because their ability to reason is seriously damaged. Without medication, I don't see how they can stabilize and come back to reality. It seems harsh to force them to take medications, but the alternative could be a disaster. It takes a lot to meet all the criteria for involuntary treatment, and I think the people that meet it should not be walking around without a good deal of assistance. "

Closing of psychiatric hospitals

On her latest post, The Trouble with Spikol, Liz Spikol writes about the possible closing of a New Jersey hospital due to the terrible conditions that exist. No mention is made of how to improve those conditions, just that Ancora Hospital should be shut down.

However, I think the comments made by some of her readers are very insightful and explain that it isn't as simple as closing down a facility that doesn't provide the care that is desperately required for someone who has a diagnosis of a severe mental illness and needs very intensive support.

HS wrote, "Despite the clear lacking in care at hospitals like Ancora the reality is that the patients they treat can't live on there own and most do need an inpatient hospital level of care." Stan stated "Sure you can close down the hospitals, (they did that is California a long time ago without private or community resources’ to feel in the gaps, and you had lots of mentally ill people living on the streets without or with very limited mental health care options). So then where do you put these people?"

I think both of their comments show that this issue is more complex than just mandating the closure of hospitals. The consequences could be even worse for those in need of intensive support than what already exists.

Although Stan is not in favor of hospitals serving everyone with a mental illness, he acknowledges that some individuals do that that level of care, "I’m definitely not convinced that institutions are the best way to provide effective mental health services unless we are dealing with the most extreme and dangerous patient population."

I also agree with his analysis that "holistic community based programs would not only be more effective and humane, but would be much more cost effective also." Assertive community treatment (ACT) programs can fill that need, when they are run well and follow the model.
However, in states where inadequate treatment laws exist, those who are unable to seek treatment because of their lack of insight would receive no supports or services at all. Only assisted outpatient treatment laws could help those individuals.

I think we've reached a crisis point in how we approach these issues and intensive attention needs to be paid to providing the proper supports to those who are often the most vulnerable in our society. Until then, we will continue to see an increase of homelessness, incarcerations, and victimization.

We need to act now.

Reliving the experience

I've been in touch with a new friend who is going through a very similar experience that I had when my daughter's mental illness included a lack of insight that prescribed medications could help her. Because of non-compliance with treatment, she cycled in and out of hospitals, each time becoming more symptomatic, and endangering her life as she wandered off at all times of the day and night. Eventually, after reaching the required level of "clear and present danger to self or others" required by law, she would be hospitalized through an involuntary commitment.

My friend's daughter's journey has also included a month and a half period spent in jail, because while off medications and not thinking too clearly, she attempted to rob a store. This woman is not a criminal and, she had never tried to do anything like that before. Eventually, charges were dropped, after my friend had posted bail. Even the authorities understood that this woman was not well and was acting irrationally. Untreated mental illness does unfortunately, lead some people to listen to voices in their head and/or not listen to the common sense instincts that would have prevented her from attempting to break the law.

My heart truly breaks for my friend and her son who are trying to keep this daughter/sister safe and find a way to help her understand the need to reach out for treatment that has proven effective in the past or to convince the mental health system that she needs very intensive services. Until then, all I can do is be a friend, a sounding board, offer some advice on how to approach the mental health system that no longer seems to believe in long-term hospitalizations or intensive assisted outpatient services and who are not legally obliged to require someone to stay in treatment unless they are a "clear and present danger to themselves or others."

My friend's daughter's situation one more reason why I advocate for changes to our Mental Health Procedures Act in Pennsylvania through the proposed assisted outpatient treatment law, SB 226. Although the majority of people with a mental illness can and do reach out for treatment, this small minority of people with a severe mental illness and lack of insight need a compassionate law that will help them and require intensive mental health services of those whose jobs it is provide treatment.

With the support of other advocates, including this mother, we will hopefully see a better mental health system in place.

Implementing AOT in CA

When California passed their assisted outpatient treatment law (AOT) Laura's Law in 2003, it passed without mandating that the counties in that state implement it. Unfortunately for the people in that state with a severe mental illness and lack of insight to remain in treatment, few counties are currently making use of that law.

However, according to an article in the California Chronicle, that could soon change. "Senator Leland Yee (D-San Francisco/San Mateo) has introduced legislation that would help local governments in providing assisted outpatient treatment (AOT) for people with severe mental illnesses. SB 1606 would remove a number of unnecessary and cumbersome requirements in the statute known as 'Laura´s Law,' and will allow counties to maximize their local dollars while giving appropriate services to the individuals who need AOT."

As Carla Jacobs, co-coordinator of the California Treatment Advocacy Coalition, states in this same article"We have the framework and a mountain of data to support AOT, what we need is the will from local government leaders to put this statute into action. People are dying who could have been helped."

As many of us advocate for changes to the treatment laws in Pennsylvania, we wish them success to see their AOT law implemented state-wide and will be sure to require that our counties have a mandate to implement our proposed bill, SB 226, when it becomes law.

Self-determination without insight

The letter to the editor , Keep mental health care consumer-driven, that appeared in the Roanoke Times February 21, 2008, pretty much explains why it is so difficult to see changes to the "imminent" or "clear and present" danger levels to our treatment laws and why advocates for assisted outpatient treatment (AOT) bills struggle to see AOT legislation become law in their states.

Fortunately, the majority of individuals diagnosed with a mental illness can and do take control of their own treatment decisions and can rely on a written document, called an advanced directive, to state which treatments they want or would approve of if they were in a crisis situation and they weren't capable of requesting treatment.

Wesley Dickens states in his letter, "In any matter related to mental health, self-determination and empowerment should always be at the forefront of the debate." Of course, that statement ignores the small minority of people with a mental illness who lack insight that they have an illness and by their own self-analysis, do not seek treatment. In their case, "self-determination" can leave them out in the cold, sometimes literally and with fatal results, as mentioned in a recent blog from the Treatment Advocacy Center.

I think it is important to understand that lack of insight or anosognosia can prevent someone from seeking help before they are dangerous or from writing an advanced directive and that they need the sustained treatment that AOT laws provide to keep them out of crisis, until they reach a point where they seek their own treatment.

If everyone who believed in "self-determination and empowerment for anyone with a mental illness" would take the time to read Dr. Xavier Amador's book, I Am Not Sick, I Don't Need Help, I think that they might also begin to believe that a small minority of people with a mental illness may need the consistent, sustained support and services that AOT laws require.