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.

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.

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

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.

PA and VA - What We Have in Common

Providing the proper infrastructure of sufficient services for individuals with a diagnosis of severe mental illness such as acute respites, clubhouses, crisis centers, and hospitals is obviously a requirement that every state should have in place.

However, both PA and VA also have a need to change our treatment laws so that the small minority of people with a severe mental illness and lack of insight to seek and remain in treatment are provided the timely treatment they deserve through an assisted outpatient treatment (AOT) law, such New York's Kendra's Law.

In an article written by Alexander Harris, Capital News Service in the Henrico Citizen, "Lawmakers Seek to Update State’s Mental Health System," on January 27, 2008, Jonathan Stanley from the Treatment Advocacy Center states, “Should we help someone who is sick and determine what’s in their best interest, or abandon them without care?”

As Mr. Stanley also states, "A quarter of 1 percent of New York’s population [under Kendra's Law] is placed in assisted outpatient treatment programs every year. The same standards would place about 300 Virginians with mental illnesses into treatment programs that they would not receive otherwise."

In Pennsylvania, using the same statistical analysis, the number of people who would benefit from our proposed legislation, SB 226, would be about 500 a year, or, if broken down by area, approximately 8 people per county.

Hopefully both PA and VA will soon adopt a sensible approach through our proposed AOT legislation to help those who most often find themselves homeless, victimized, or incarcerationed because of lack of timely treatment.