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.

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.

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.

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.

Reform with care

"Some -- though not all -- advocates for mental health care reform want the state to adopt a law similar to New York's Kendra's Law, one that would trigger mandatory outpatient treatment well before someone would be considered a danger to himself or others."

This quote, from an editorial from Virginia's Roanoke Times, Reform with care, could have just as easily been published in a newspaper from Pennsylvania.

Both VA and PA are fighting to see a sensible law passed that will allow timely, compassionate treatment for their family members with a mental illness who do not seek treatment on their on due to a lack of insight of their illness. As the article states, "These advocates argue the state should mandate treatment for people who suffer substantial effects from their illness but are unable to understand the nature of it and, without treatment, will deteriorate and become significantly less able to function in their communities."

Changing treatment laws to help those individuals who are often most vulnerable is an effort worth fighting for and Kendra's Law in New York is a proven model that we should follow.

Involuntary commitment - helpful in times of crisis

Treatment for mental illness sometimes does require an involuntary commitment when someone lacks the insight to seek treatment on their own which can then lead to times of crisis. As posted in an article on Pantagraph.com, "In Illinois, a new law taking effect this summer could make it easier for people to obtain mental health treatment before they reach such a crisis level."

In Pennsylvania, Senate Bill 226 could help to prevent crisis situations from occurring at all, since it is an assisted outpatient treatment (AOT) law, modeled after Kendra's Law, that has proven results that show a reduction in hospitalizations, homelessness and incarcerations.

Timely, compassionate treatment can make the difference between someone suffering needlessly and finding themselves in dangerous situations that could have been avoided and receiving treatment that allows them to return to their usual routines.

How unkind and unfair it is to withhold the treatments that work - as a caring society, we should do better than that.

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.