I returned from the NAMI National Convention yesterday and was reflecting on the many workshops I attended and the connections I was able to make in order to gain further information about the two advocacy efforts I spoke about as one of the presenters at a workshop on advocacy, assertive community treatment (ACT) and assisted outpatient treatment (AOT).
I learned from a phone message from my brother that a letter to the editor that I had written a couple of weeks ago was published in the Bucks County Courier Times on Monday, June 16, "New law would ensure that the mentally ill get needed Help" (I hadn't chosen that title). I was glad to see that the information regarding our advocacy efforts for SB 226 appeared in our local paper. Please send any comments you might want to share to this newspaper.
Although I spoke with many people at the convention who were very supportive of both ACT and AOT, I did meet with some who shared their concerns about how AOT laws are implemented. After listening to their comments, I realize that there is still a lot of misunderstanding about issues such as who would be affected by AOT (my answer: a very small minority, less than 1% of the people with a severe mental illness and history of hospitalizations or incarcerations or violence) and that there are still some people who do not believe that lack of insight or anosognosia exists and stands in the way of people seeking treatment on their own (my answer: to read Dr. Xavier Amador's book, I Am Not Sick I Don't Need Help! as well as the briefing paper on the Treatment Advocacy Center's web site which explains how lack of insight impairs someone's ability to seek and remain in treatment.)
It is still my hope that, over time, more understanding about the benefits of AOT for those whose lives are often devastated by lack of treatment will enable more states, including my own, to pass these life-saving laws.
Showing posts with label lack of insight. Show all posts
Showing posts with label lack of insight. Show all posts
Wednesday, June 18, 2008
Tuesday, June 10, 2008
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.
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.
Wednesday, May 14, 2008
Avoiding Victimization
I started advocated several years ago for changes to the Mental Health Procedures Act in our state that currently requires someone to be a danger to self or others before treatment is provided. Having experienced the heartache and tragedy of watching my family member go through numerous crisis situations followed by involuntary hospitalizations, I knew something had to change.
From the perspective of law enforcement, who often become involved when someone with a mental illness is in crisis, Dr. Laurence Miller has written an article that appeared on PoliceOne.Com news on May 12, 2008, P1 Exclusive Series: Dealing with mentally ill citizens on patrol.
The part that hit home for me and my main reason for my assisted outpatient treatment (AOT) advocacy efforts is the last sentence in the first paragraph under "Law enforcement response to the mentally ill," which states "However, the mentally ill are far more often the victims of crime than the perpetrators, and are three times as likely to be crime victims as ordinary citizens."
I think that people who have symptoms of severe mental illness and are not able to remain in treatment because they lack the insight to understand the need to take prescribed medications fall into the category of being "three times as likely to be crime victims." Helping someone remain in treatment, even if that requires court ordered assisted outpatient treatment, can help individuals avoid dangerous situations that can lead to victimization.
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.
Sunday, February 24, 2008
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.
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.
Saturday, February 2, 2008
Timely Treatment Tested
Although I planned to avoid the topic that is currently in most newspapers and on every news station lately about Britney Spears and her need to, at the very least, be evaluated for treatment for a possible illness, I decided to write about my views after all. I ignored it until now because it was presented in the typically exploitive way that most Hollywood stories are told. But, there are important lessons that can be learned about the importance of timely treatment from this situation.
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?
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?
Saturday, January 5, 2008
AOT - a compassionate outreach
I am advocating for changes to our treatment laws in Pennsylvania for those with a severe mental illness and lack of insight into the need to seek or remain in treatment. Although many advocate for changes to treatment laws due to violent incidents that can occur with untreated mental illness and those stories are the ones that we most often see in the media, that is not what brought me to advocate for changes in my state.
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.
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.
Sunday, December 9, 2007
The Right to Treatment
How does one go about protecting one of the human rights that is most important to an individual with a severe mental illness and a lack of insight into the need to receive treatment?
The question is a global one, and was addressed recently in an article from the Irish Medical News, "Right to treatment should not be forgotten in psychiatry". As mentioned in this article, Dr. Brendan Kelly of the Department of Adult Psychiatry, UCD stated that "the Act [Ireland's Mental Health Act, 2001] does increase protection for the right to liberty – but indicated that other important rights relating to mental health, may not be equally protected." He stated “The Act certainly increases protection for the right to liberty, but it focuses on that right so much that there is scant attention paid to other rights – the right to treatment, for example."
I agree with Pete Earley's statement on this blog site under Commonsense Quotes: "If I had a chronic mental illness and there were medicines that could help me recover, I would want my loved ones and doctors to make certain that I got them, not to stand by and watch me suffer."
I think that we should take the same compassionate stand to help those whose lives are affected by the devastating consequences of untreated mental illness. They should have a right to receive timely treatment and we should do all that we can to advocate to help protect that vitally important right.
The question is a global one, and was addressed recently in an article from the Irish Medical News, "Right to treatment should not be forgotten in psychiatry". As mentioned in this article, Dr. Brendan Kelly of the Department of Adult Psychiatry, UCD stated that "the Act [Ireland's Mental Health Act, 2001] does increase protection for the right to liberty – but indicated that other important rights relating to mental health, may not be equally protected." He stated “The Act certainly increases protection for the right to liberty, but it focuses on that right so much that there is scant attention paid to other rights – the right to treatment, for example."
I agree with Pete Earley's statement on this blog site under Commonsense Quotes: "If I had a chronic mental illness and there were medicines that could help me recover, I would want my loved ones and doctors to make certain that I got them, not to stand by and watch me suffer."
I think that we should take the same compassionate stand to help those whose lives are affected by the devastating consequences of untreated mental illness. They should have a right to receive timely treatment and we should do all that we can to advocate to help protect that vitally important right.
Wednesday, October 31, 2007
Untreated Mental Illness - Who's To Blame?
I had originally written and planned to post information about my personal experiences of the heartaches and frustrations that I encountered as a family member of a loved one with mental illness who lacked insight and did not take prescribed medications. The process of watching someone you love deteriorate until they reach an acceptable level of dangerousness, as determined by a law, which requires "clear and present danger to self and others" as the law in Pennsylvania does, is the most unbearable experience that anyone could ever live through.
However, I then read an article this morning from a paper in Virginia: http://www.inrich.com/cva/ric/news.apx.-content-articles-RTD-2007-10-30-0149.html. The incident is tragic enough, but what really drew me to want to write about this terribly sad incident, instead of my own personal experiences, were some of the comments posted under that article, such as:
Posted October 30, 2007 @ 09:55 AM by Anonymous
after reading this man's rap sheet i too am finding compassion a hard sell. i agree the family dropped the ball, this man needed to be under lock and key somewhere and his family should own up to their responcibility.
Posted October 30, 2007 @ 09:07 AM by Anonymous
I find it incredible that the man's sister, and whatever other family members, are blaming the community for their own failure. She knew he was sick and was required to take his medication. She states she was not his guardian, so she is indicating a third party was supposed to be his guardian thereby releasing her from any burdens. His family should be held liable for neglect and endangering the public by not providing the proper supervision and care for their own family member.
Posted October 30, 2007 @ 06:49 AM by OpEd
What's up with this man's sister? Somebody dropped the ball? Where does family responsibility come in? Perhaps I'm jumping the gun here, but it sounds like she was blaming the "system." If the community of family and aquaintances knows about this guy, then they are the first line of defense, not the overburdened mental and social services departments.
I was shocked and appalled by these comments because, as a family member who repeatedly waited and was frustrated by the mental health system when treatment was desperately required for my own daughter, only to be stopped by both lack of enough intensive services and our state's requirement for "clear and present danger to self or others" before she could receive the treatment she needed, it hit me hard to think that others would even consider blaming this family.
As a NAMI advocate, I was able to successfully work for the establishment of more intensive services in our county, and Bucks County was the first Program of Assertive Community Treatment (PACT, a.k.a. ACT) established in Pennsylvania that follows the national standards set up by the original program.
However, the extreme difficulty of obtaining timely services for family members when they desperately need them is still blocked by our current treatment law, the Mental Health Procedures Act of 1976, that still requires a level of dangerousness that no one should ever have to wait for, before they can receive treatment. I am now working with the Treatment Advocacy Center (TAC) to change our law, through the proposed Senate Bill 226.
Blame and pointing a finger at families who try desperately to get help for their loved ones and who often are involved in advocating for the changes needed will not resolve the issue of ensuring that someone with a mental illness receives the treatment they need. Enacting common-sense, timely assisted outpatient treatment (AOT) laws with adequate services and programs, as well as providing sufficient support in a hospital when needed, is what should happen.
As John Snook, Esq. from TAC stated about this tragedy in Virginia, "Unfortunately, the reports we've heard echo what families tell us far too often," Snook said. "Even when an individual has been ordered by a court to maintain their treatment, adequate supervision in the community simply isn't taking place."
I invite you to post your thoughts and comments on this issue. Do you think that the family was to blame? Should we be looking for changes to our mental health systems and laws?
However, I then read an article this morning from a paper in Virginia: http://www.inrich.com/cva/ric/news.apx.-content-articles-RTD-2007-10-30-0149.html. The incident is tragic enough, but what really drew me to want to write about this terribly sad incident, instead of my own personal experiences, were some of the comments posted under that article, such as:
Posted October 30, 2007 @ 09:55 AM by Anonymous
after reading this man's rap sheet i too am finding compassion a hard sell. i agree the family dropped the ball, this man needed to be under lock and key somewhere and his family should own up to their responcibility.
Posted October 30, 2007 @ 09:07 AM by Anonymous
I find it incredible that the man's sister, and whatever other family members, are blaming the community for their own failure. She knew he was sick and was required to take his medication. She states she was not his guardian, so she is indicating a third party was supposed to be his guardian thereby releasing her from any burdens. His family should be held liable for neglect and endangering the public by not providing the proper supervision and care for their own family member.
Posted October 30, 2007 @ 06:49 AM by OpEd
What's up with this man's sister? Somebody dropped the ball? Where does family responsibility come in? Perhaps I'm jumping the gun here, but it sounds like she was blaming the "system." If the community of family and aquaintances knows about this guy, then they are the first line of defense, not the overburdened mental and social services departments.
I was shocked and appalled by these comments because, as a family member who repeatedly waited and was frustrated by the mental health system when treatment was desperately required for my own daughter, only to be stopped by both lack of enough intensive services and our state's requirement for "clear and present danger to self or others" before she could receive the treatment she needed, it hit me hard to think that others would even consider blaming this family.
As a NAMI advocate, I was able to successfully work for the establishment of more intensive services in our county, and Bucks County was the first Program of Assertive Community Treatment (PACT, a.k.a. ACT) established in Pennsylvania that follows the national standards set up by the original program.
However, the extreme difficulty of obtaining timely services for family members when they desperately need them is still blocked by our current treatment law, the Mental Health Procedures Act of 1976, that still requires a level of dangerousness that no one should ever have to wait for, before they can receive treatment. I am now working with the Treatment Advocacy Center (TAC) to change our law, through the proposed Senate Bill 226.
Blame and pointing a finger at families who try desperately to get help for their loved ones and who often are involved in advocating for the changes needed will not resolve the issue of ensuring that someone with a mental illness receives the treatment they need. Enacting common-sense, timely assisted outpatient treatment (AOT) laws with adequate services and programs, as well as providing sufficient support in a hospital when needed, is what should happen.
As John Snook, Esq. from TAC stated about this tragedy in Virginia, "Unfortunately, the reports we've heard echo what families tell us far too often," Snook said. "Even when an individual has been ordered by a court to maintain their treatment, adequate supervision in the community simply isn't taking place."
I invite you to post your thoughts and comments on this issue. Do you think that the family was to blame? Should we be looking for changes to our mental health systems and laws?
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