Sunday, July 20, 2008
Another preventable death
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.
Sunday, July 6, 2008
Read Insanity Offense...for a better understanding
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.
Thursday, July 3, 2008
We're all responsible
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.
Wednesday, June 18, 2008
NAMI National Convention and AOT Letter to the Editor
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.
Tuesday, June 10, 2008
Advocating for change to mental health 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.
Sunday, June 1, 2008
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.
Saturday, May 24, 2008
NAMI National Convention and link to MTV True Life Series
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
Sunday, May 18, 2008
Inpatient and Outpatient Treatment
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.
Wednesday, May 14, 2008
Avoiding Victimization
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.
Tuesday, May 6, 2008
Involuntary commitment laws based on need for 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.
Sunday, April 27, 2008
Idaho passes important bill
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.
Monday, April 14, 2008
Importance of inpatient and outpatient services
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.”
Thursday, April 10, 2008
Virginia govenor signs bill
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.
Tuesday, March 25, 2008
Louisiana's AOT Bill - Nicola's Law
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.
Friday, March 21, 2008
Shortage of psychiatric beds
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)
Sunday, March 16, 2008
Mental Health Parity Questioned
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.
Wednesday, March 12, 2008
California's Laura's Law
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. "
Monday, March 10, 2008
Closing of psychiatric hospitals
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.
Sunday, March 2, 2008
Reliving the experience
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.
Wednesday, February 27, 2008
Implementing AOT in CA
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.
Sunday, February 24, 2008
Self-determination without insight
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.
Friday, February 22, 2008
The trouble with our mental health system
My comment to her post:
I've been on the phone this morning with a friend whose daughter was incarcerated for attempting to rob a drug store and who, after spending over a month in jail, was just cleared last week of the charges because they realized that she did so while she was not receiving treatment for her mental illness. Her mother had paid $440 to get her out of jail just barely a month ago, (jails and prisons are now the places where many people with a severe mental illness end up instead of psychiatric hospitals). After bringing her daughter home, she wandered off, listening to the voices in her head that told her to leave, and was found walking in Philadelphia with no shoes on her feet on a very cold, rainy day in January by a good Samaritan who took her took a hospital. Her daughter was given treatment through a 303 involuntary commitment which should have been for 20 days but lasted for 2 weeks.
Back home since this past Monday, she still leaves her home and walks away (she does not drive) at all times of the day and night. Her mom, brother, and neighbors try to take turns watching her, trying to keep her safe on these cold, wintry snowy days. In the past few months, she has been found wandering and has slept in parks and was once found in the parking lot of the Philadelphia Zoo, having taken an overdose of over-the-counter drugs (they did hospitalize her then because she was a "clear and present danger" as required by our current law).
But the voices continue to tell her to leave, and this morning she wandered off again. Her mom called 911. The police picked her up and the mom told him that her daughter was still technically on a commitment order to be in treatment (which should have been the 20 days commitment in a hospital). But, she was released early and, in case you're not aware, that commitment order means nothing in this state once you're released. In theory it should, but it doesn't.
So, this mom and son of this very ill woman who desperately needs treatment just took her to an emergency room to see if they would involuntarily commit her this daughter/sister again, because they are concerned for her health and safety and for want could happen the next time she wanders off without medications or an understanding of the need to seek shelter on a freezing day or night. The mom just called me to say that the crisis center would not admit her because she doesn't qualify under our state’s "clear and present danger" criteria requirement.
So, for anyone who believes that someone with a severe mental illness who lacks the insight to remain in treatment and who constantly put themselves in precarious situations, who does something while not thinking clearly and ends up in jail, who is found unconscious in a parking lot or walking around the city without shoes on a cold, wintry day, please explain to me why you wouldn't want to help someone so vulnerable and ensure that she receives shelter and treatment in a hospital.
No, this woman does not want to be in a hospital, she says that she needs to listen to the voices in her head (these are audio hallucinations that are a part of the psychotic symptoms of some severe mental illnesses). But as a caring, humane society, shouldn't we be helping her in a time of need when she doesn't know better and is making decisions that put her very life in jeopardy? Someone, please explain why withholding treatment is the right thing to do.
Yes, our current laws say that is the right thing to do, do you?
Wednesday, February 20, 2008
What does it take
In an editorial in the Washington Post, After Virginia Tech, the author expressed regret that they didn't really address what needed to be changed, "Other states have adopted more flexible standards under which people can be detained who are likely to become dangerous if not treated, or whose condition is rapidly deteriorating, or who are incapable of making rational decisions about their treatment. The effect of those reforms is to provide treatment to people before they are in extreme crisis -- in other words, before it may be too late."
Virginia's proposed SB 177, as well as Pennsylvania's proposed SB 226, would require the type of supportive services that would help someone avoid extreme crisis and which also helps to reduce hospitalizations, homelessness, and incarcerations.
I look forward to the day when legislators in every state understand the need for sensible, timely AOT laws
Wednesday, February 13, 2008
Understanding mental illness
The reporter who wrote the article in the Los Angeles Times, Leave Britney alone, had that effect on me this morning.
I also have a family member who was diagnosed with schizo-affective disorder and she is the reason that I advocate for changes to our treatment laws. Witnessing someone you love go through the deterioration caused by untreated mental illness when they lack the insight to receive treatment, while waiting for them to reach a level of dangerousness required by law, is one of the most heartbreaking experiences that you can imagine.
I was recently contacted by CNN asking what it was like to have to seek involuntary commitment orders for my daughter. They then asked if my daughter would appear on TV for an interview, talking about her experiences dealing with her illness. At first she was willing, thankfully she now has the insight to remain in treatment, but after we talked it over, we declined. A big part of the reason was that I didn't want her to appear on their news show because I didn't want her to become a part of the circus that the media has made out of Britney Spears experience.
Although I think that station would have handled the topic of mental illness with dignity, I don't know what other media sources might have picked up on it and I certainly wouldn't want the person who I admire and respect for her courage in dealing with her illness to be exposed to any humilation as some media sources have done to that entertainer and her family. My sympathy goes to all of them.
Mental illness is a biological disease that should be treated and discussed with the utmost respect and compassion for those whose lives are affected by it. The timely treatment that assisted outpatient treatment laws provide should be given to all of those who lack the insight to seek their own treatment.
Tuesday, February 12, 2008
Reform with care
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.
Sunday, February 10, 2008
Involuntary commitment - helpful in times of crisis
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.
Saturday, February 2, 2008
Timely Treatment Tested
As a mother who experienced the need to have my own daughter involuntarily committed into a hospital for treatment, and as a friend of many people who have had to seek this type of supportive help for their family members when they desperately needed it, I know the heartache, frustration, sense of hopelessness and mixed feelings that we all encounter.
In a perfect world, whenever someone needed help for any illness or disease, they would seek it out on their own, and find the appropriate level of care, services, and treatments that would be beneficial. However, with some illnesses, such as schizophrenia and bipolar, approximately half of the people may lack the insight that they have a diagnosed, treatable illness and therefore they do not seek any medical advice at all. If a family member or friend does not step forward to help and advocate on their behalf, individuals with untreated symtoms of mental illnesses can find themselves in terrible situations, can become a victim themselves or end up homeless or incarcerated.
Watching someone you love deteriorate to a level that is often required by many state laws is both heartbreaking to observe and frustrating, especially when effective treatments are available and could help him or her return to their usual level of health and competency. A family member does feel hopeless if they try to enlist the help that mental health services could provide but are told, "No, your loved one must first pass a test - he or she must first do something that is considered dangerous, otherwise we can't provide any treatment."
Although families who have witnessed this process with their loved one can identify with this experience, others who may not have had this experience can now begin to see the illogical reasoning that withholding treatment implies, and although I still think that this young rock star (who may or may not have a mental illness) and her family should be able to privately handle this situation without cameras and reporters following their every move, they may be helping to bring attention to an issue that is often ignored and misunderstood.
Yes, even families and friends who advocate for changes to treatment laws have mixed feelings about involuntary commitments because we would rather see our loved ones seek treatments on their own, or would rather that their loved one didn't have an illness at all. All of the parents I know hope to see their family members make their own choices and live independent lives. But, when we see our loved ones suffer and watch them deteriorate, few can turn their backs and just hope for the best. If you put yourself in that position, would you?
Sunday, January 27, 2008
PA and VA - What We Have in Common
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.
Friday, January 18, 2008
The Ultimate Civil Liberty
Robin: Some consumers consider AOT laws to be a violation of their civil liberties, a form of incarceration.
Kurt: You can start from the proposition that people have a constitutional right, a civil liberty if you will, to remain psychotic and delusional, and to have thoughts and say things that make no sense. This seems to be the position that is taken by many civil libertarians. The TAC believes that if you look at the situation practically, the ultimate civil liberty that we want to protect is the ability of people to function normally and well in society, to be able to achieve their maximum potential as human beings. The only way to accomplish this is to be committed, as a society, to providing people help when they're unable to obtain help by themselves. So we see ourselves as being involved in helping to promote civil liberties by ensuring that people who are prisoners of a psychosis can be set free of it. In other words, we are involved in providing the key that will enable them to walk out of their private prisons and to once again function normally in society.
Saturday, January 12, 2008
Virginia reviews involuntary commitment standard
Virginia's House of Delegates subcommittee has begun their review of the standard used for involuntary commitments for individuals with a mental illness who do not voluntarily seek treatment. VA's commitment law currently requires an imminent danger to self or others and the proposed legislation, House Bill 559, would change that to ‘There is a substantial likelihood that, as a result of that mental illness, a person will, in the near future, cause serious physical harm to himself or others as evidenced by recent behavior causing, attempting or threatening such harm, or any other relevant information,’”
Just as in Pennsylvania, where our clear and present danger criteria and inability to include a history of prior hospitalizations when determining the need for treatment, Virginia's overly strict criteria often stands in the way of timely treatment that can help prevent the type of dangerous situations that both of our states' laws now require before someone is provided treatment.
In an article from Virginia's The Daily Progress, Mental health bill vetted by panel: Proposal would ease involuntary commitment standard, by Bob Gibson, January 12, 2008, Alex R. Gulotta, executive director of the Charlottesville-based Legal Aid Justice Center, stated “If we had the time and money, we would create more services at the front end” and prevent people from getting worse and needing involuntary commitments."
Providing more services alone does not identify what is at the core of the problem for those with a severe mental illness and a lack of insight (a.k.a. anosognosia) to seek treatment. If someone does not realize that they need support because they are experiencing the symptoms of a mental illness that could be helped with treatment, they will not ask for treatment, either before they are "getting worse" or when they are in dire need of immediate help, whether or not services are available.
In my own situation and from the many families I have spoken with, services were available for their family member: club houses, day programs, group therapy during hospitalizations and mental health professionals were also available: psychiatrists, therapists, and case managers. The only thing missing was a law that would require the person in need of help for the symptoms of their illness to accept the prescribed treatment from the mental health professionals who had evaluated their needs for medication, therapy, and services.
Laws such as PA's proposed Senate Bill 226 are court-ordered assisted outpatient treatment (AOT) laws that provide the services and treatments that an individual with a severe mental illness may need for an initial period of just 6 months, followed by a review and, if required, an additional year. The law would also require the designated provider to be responsible for providing the support and follow-up of services the individual may need. This type of timely, consistent support has been proven to be effective, as the outcomes from NY's Kendra's Law show so clearly.
Hopefully, over time, the results of effective AOT laws will lead other states around the country to use that model so that individuals with a severe mental illness and lack of insight to seek support on their own will have the benefit of timely, compassionate treatment.
Tuesday, January 8, 2008
Missing Persons
I was therefore surprised to see the brother of this woman on the news, talking about how very worried their whole family was because the missing woman has bipolar disorder and she had apparently written in her journal that she had stopped taking her medications three weeks ago. Her brother stated that when she is on her medications, she is a very kind, thoughtful woman. But without them, she is not thinking clearly and would be experiencing manic-depressive symptoms. Her brother gave an impassioned plea to help find her, asking for people to be compassionate and contact them if someone sees her and that someone from his family would then quickly go and take care of her. His family is from different parts of the country and they're taking turns going to Louisiana whenever there is a sighting.
I was so surprised that they mentioned on the news that this woman had an illness and that, because her family knew she might be even more vulnerable because she wasn't taking her usual prescribed medications, they were even more concerned for her. It really is rare for an anchor to ask the family member, as they did on this news show, "I know you mentioned you were especially concerned because of an issue with medication" and the brother to talk about how important the medications were for his sister and how much they are needed for her well being.
The worry and concern for the safety of someone you love when they are missing is difficult for anyone who has had that experience. This brother's concern because he understands that his missing sister could be even more vulnerable because of her untreated illness may help to educate the public of the importance of prompt, timely treatment.
Saturday, January 5, 2008
AOT - a compassionate outreach
My main concern for my daughter when she stopped taking the medications that helped keep the voices under control was that when she wandered off at the suggestion of those voices, she would put herself in too dangerous a situation, and would be victimized. A friend of mine whose daughter wandered off when not taking medications ended up in jail, with a charge of robbery, because she tried to get money from a drug store, even though she had a bank account that she could have accessed. She wasn't thinking clearly and she shouldn't be incarcerated now in order to finally receive the treatment she needed but lacked the insight to request.
Vermont is another state looking into changes for their treatment laws. An article in the Times Argus, "Involuntary medication acts to divide" simplifies the delay of taking medications by stating that people would be eligible for voluntary commitments simply because they don't "comply with a doctor's treatment plan within a week."
Assisted outpatient treatment (AOT) laws such as Kendra's Law in New York, (which is also the law that PA's proposed SB 226 is modeled after) have much more stringent criteria before someone would be required to remain in treatment, including a history of hospitalizations or incarcerations.
AOT laws are compassionate outreach programs designed to help someone regain the ability to take control of their own treatments. Without timely intervention, then the chances of homelessness, incarcerations, victiminizations, and yes, sometimes violence are increased significantly.
Preventive, timely treatment for those with mental illness and lack of insight is just common sense and shouldn't be a divisive issue.
Tuesday, January 1, 2008
When hospitals close their psychiatric units...
A guest opinion article, Must not only fix broken bones, but broken brains, too, was published in The Bucks County Courier Times on December 29, 2007. Many legitimate reasons were sited as to why closing this hospital would not be a wise decision.
As mentioned, "With appropriate effective medication and services most people who live with serious mental illnesses can significantly reduce the impact of their illness and find a satisfying measure of achievement and independence." For someone who lacks insight and does not remain with prescribed treatment, if this hospital closes, there will not be a nearby facility where they can receive the care they may need on either a voluntary or involuntary inpatient status.
Our state's very restrictive Mental Health Procedures Act, which only allows for treatment when someone is a "clear a present danger to self or others," does not provide the treatments someone may need to help keep them out of a dangerous situation. If we had an assisted outpatient treatment (AOT) law such as SB 226, clients in need of treatment who lack insight for a need for treatment could at least be assured timely treatment in the community.
But, if this hospital closes its psychiatric unit in February 2008, as they state they most likely will do, the support system for those who desperately need help for an untreated mental illness will be majorly reduced and the consequences will be devastating. Without either timely inpatient treatment in a hospital or continuous, sustained outpatient treatment through an effective AOT law, 2008 will not be off to a very good start for many people with a mental illness and their families and friends.