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.