Congress Needs To Listen To Persons With Mental Illnesses

No_one_listens_by_toni_mayyy

From the moment I was first contacted by a House subcommittee investigating our failed mental health care system, I have urged its staff to hear testimony from persons with mental illnesses. Rep. Tim Murphy (R.Pa) has conducted two hearings and a public forum, the most recent being held last week.

Yet, the House Oversight and Investigations subcommittee of the Energy and Commerce Committee still has not heard from anyone who actually has a mental disorder.

Rep. Murphy risks undercutting his subcommittee’s earlier accomplishments unless he holds another hearing — this one entirely focused on listening to persons with mental disorders.

Unfortunately, excluding persons with mental disorders from events is still much too common.  I often arrive at symposiums, only to find that no “consumer” has been invited. This is wrong. It further marginalizes and stigmatizes our loved ones.

The most common excuse  I hear is that a consumer might be embarrassed if he or she is asked to tell their story.  Why? There should be no shame in having a mental disorder — only shame in not offering meaningful help to someone who needs it.  I am not blind to the dangers of speaking out because of stigma.  A person has to wish to speak out publicly.  However, the idea that no consumers want to speak is ridiculous.

The Washington Post yesterday published a front page story about a man with a mental illness. Take a moment to read the comments posted on my blog by consumers. NAMI runs In Our Own Voice.   Speakers also can be found at Mental Health America and Depression, Bipolar Support Alliance.

I have never been involved in a mental health group where there is no one willing to speak.  All too often, consumers don’t volunteer because they are not asked. No one thinks there is anything that can add. They might say something embarrassing. 

When Virginia governor Timothy Kaine appointed a panel to investigate the shootings at Virginia Tech, I urged him in a Washington Post editorial to appoint a consumer on the panel. Who would know better than a consumer what barriers might keep someone who is showing the symptoms of a mental disorder in college from seeking help?

Clearly, if someone is in the midst of a psychotic break and has impaired thinking, asking them to heal themselves is nonsensical. But most persons who are in recovery have strong, insightful opinions about what helped and didn’t help them. Even when someone is psychotic, listening to them and treating them respectfully is important.

 The last time my son was picked up by the police, he asked the Crisis Intervention Team officer to let him ride to a hospital emergency room in the back of a police car without being handcuffed. Using his discretion, the officer chose to not shackle my son. When they reached the hospital,  my son thanked the office for treating him with understanding.  Unless you are a person who has been handcuffed while psychotic, you may not understand how significant that CIT officer’s action was.  The previous time when officers encountered my son, he resisted when they handcuffed him. That’s when he got tasered and ended up being hogtied.

I listened to him and I learned.

I realize that some are fearful of having consumers testify because many of the most vocal often express views that are contrary to the medical model and to  psychiatry. As long as individuals express themselves respectfully without engaging in personal attacks, browbeating and hyperbole, then they should be heard. Their arguments can stand or fall on their own merits.

The comments posted on my blog that are the most helpful to me are written (as they were last week) by persons who describe their personal experiences with our mental health care system. We must learn from each other and that includes hearing from individuals who are in recovery.

I’ve been told the subcommittee doesn’t have money to bring witnesses to Washington D.C. to testify. (Perhaps it should get a grant from SAMHSA!)  Fortunately, there are many eloquent consumer advocates who live near our nation’s capital. Dr. Kay Redfield Jamison probably knows more about bipolar disorder than anyone, in part, because she lives with it. She would make a fabulous and fair-minded witness.

I wish the subcommittee would find a way to lure Catherine Zeta Jones, Jane Pauley, former Rep. Patrick Kennedy or some other high profile figure to the witness table because that would generate publicity and show the public a different face from the photos of the shooters in Aurora, Tuscon, and at Virginia Tech.

 The subcommittee’s Democratic co-chair, Rep Diana DeGette (Colo.) reminded her fellow members last week at the start of their third hearing that it still hadn’t heard from consumers. The subcommittee needs to listen to her.

About the author:

Pete Earley is the bestselling author of such books as The Hot House and Crazy. When he is not spending time with his family, he tours the globe advocating for mental health reform.

Learn more about Pete.

  • advocate4treatment

    The mental health policies and services in Pennsylvania, the state Rep. Murphy represents as a Congressmen, are mostly run from consumer organizations perspectives, as they work closely with our Office of Mental Health and Substance Abuse (OMHSAS) and consumers are represented on most of their committees.

    At a two-day work shop on implementing assertive community treatment (ACT programs) across our state a few years ago, OMHSAS was very proud to announce on the first morning that five consumers signed up (only two actually attended – one wasn’t there the first day and the other person had to leave early). I was the only family member but family attendance wasn’t even mentioned.

    The consumer organizations in PA have successfully advocated for the closing of our state hospitals – five hospitals have closed in the last five or six years. When our state NAMI organization stated before the closing of the second hospital that they at least wanted to see a report showing where the people being released would be relocated, they were scolded by OMHSAS that they shouldn’t say such things in a newspaper article. A representative from one of the consumer groups, PMHCA, exclaimed at a NAMI state meeting that it didn’t need to be discussed further because their organization had already approved the closure of the hospital – as if that was all that was necessary!

    Our consumer organizations have been major opponents of efforts to improve our outpatient commitment laws and have testified against AOT at the public hearings. At the first one I attended, a member of OMHSAS ran up and hugged the consumer speaker who would be testifying against AOT that day and shouted, “Thank God you’re here!”

    And, don’t worry too much about no representative at Rep. Murphy’s hearing because MHASP, as advertised through NAMI Montgomery County, has sponsored an upcoming workshop at the end of this month where consumer voices can be heard loud and clear: “Families, Mental Health Disorders & Violence: It’s Complicated! – The
    Mixed Roles of Family Members as Victims, Triggers, Early Warning Systems & Problem Solvers When It Comes to Violence by a Loved One.” With no respect for families who support and love their children with severe mental illnesses, they have described one of their sessions as follows: “Substance abuse is a key risk factor for violence,” Mannion said. Other risk factors include the family member’s hostility toward the person with the mental health disorder, the latter’s financial dependence on the family member, and mutual threats. Most violent acts occur in the home, she said.

    Having heard Joe Bruce’s heartwrenching testimony, the statements of “the family member’s hostility toward the person with the mental health disorder” and “mutual threats” sickens me.

    So, as far as Pennsylvania is concerned, don’t worry too much about consumer input on mental health issues. I understand we also have the most certified peer specialist of any other state – over 1,100 last I heard. Also, on their financial disclosure form posted on the web a few years ago, the head of MHASP was earning $102,000 – so he could most likely afford to attend any conference or hearing around.

    If you want to be concerned, it is the family voice that mostly goes unheard in PA.

    • lpogliano

      I love this reply. thanks for posting.

    • Still not an excuse to exclude the patients.

      What other illness would ANYONE agree is acceptable to discuss at this level without including actual patients?

      None. Of course. Because it’s absurd.

      • Dj Jaffe

        Severe Alzheimers, Severe Developmental Disabilities, Severe Dementia….

  • lpogliano

    when my son cannot speak, I am his voice. I am a consumer. joe bruce’s son cannot speak to this: joe bruce is a consumer. pete earley is a consumer. I may not be the subject of the court battle to remove competency, but I am certainly a part of it. I may not be the one handcuffed in a squad car, but I am certainly watching my son get handcuffed or be taken in an ambulance, and i’m paying for that distinct pleasure. I am not the one on psychotropic drugs, but I am finding and managing and administering those drugs for my son. when a consumer who does not have a happy ending to their story, such as so many of us do not, the care givers who helped him 24/7–paid his bills, instigated the many police or medical interventions, managed his meds, took him to every appointment, found appropriate care, managed his insurance claims, dealt with his psychosis and it’s varying symptoms and degrees–are most definitely qualified to speak about our experiences for and with our child. I live the life of a mentally ill person when I am NOT one. I am a consumer. (this of course does not discount the experience of the patient and how he feels, but lends support and gives credence instead to the many, many millions of voices of the care givers, whose lives, as I said, mirror those of the patient.)

    • WHEN they cannot speak, yes, we should be able to be their voices.

      But there are many persons with severe mental illnesses that CAN and DO speak for themselves.

      And they deserve to be heard.

      • KateMS53

        But it’s those of us with kids who can’t speak for themselves that are complaining. If there are consumers who think SAMSHA’s programs are wasteful too, then yes, they should have been heard. Otherwise, the ones that like all their programs have already been heard!

        • I can’t think of any patient that has a program that meets their needs. Not one I’ve ever met. My kids included.

        • Erika

          A patient should not have to agree with you, or anyone else, to be allowed to speak. It should not be acceptable to hold a committee hearing on any population of people unless you include those people. It marginalizes them to exclude them from conversations about themselves, on any level.

          In addition, if you think that most patients with a serious mental illness have a program that they “like” (odd terminology — do cancer patients who have access to chemotherapy like it?), or one that fits their needs, you are unaware of the reality of the public mental health system. While patients without insight or the capacity to act on their own behalf face barriers unique to them, ANY patient with a serious mental illness will face significant barriers in accessing treatment, because the system fails everyone.

          As I wrote to you in a prior message: “James Holmes sought out psychiatric care before the shooting, on his own accord, through his school’s hospital system; they responded by kicking him out…The man who murdered Kendra Webdale (the namesake of NY’s Kendra’s Law) was hospitalized multiple times before Ms. Webdale’s death…and each was a voluntary admission; in addition, he was on waiting lists for multiple long-term care programs that had recently had their funding slashed, and communicated with the doctors that he was not safe. Patients are frequently turned away from ERs because there are no beds, because they do not have insurance, or because they are not yet dangerous enough to be admitted. Patients are put on months-long waiting lists because there are not enough doctors, and not enough facilities. The best, long-term treatment facilities are often out of reach for the average, middle-class family. Minority and immigrant groups face language and cultural barriers. Child and adolescent patients have their educational needs ignored. Community services, even voluntary ones, are frequently non-existent. Most patients who commit suicide were seen by a mental health professional in the months before their death. And on and on. Do their stories not deserve to be heard?”

          Patients and families can fight for years to get treatment and services and, even with insight and a willingness to seek help, often fail. There are no easy dividers in serious mental illness. There is no easily constructed groups you can place people in. The barriers that exist are faced by all of us.

          Here’s an interesting bit of information: in states that have long-term, state psychiatric hospitals, a patient can often only be admitted with a court commitment order, even if they are seeking care voluntarily. You know from your experience how hard it is get that court order. Imagine being someone with an SMI, realizing you need that level of care and struggling with basic stability, trying to navigate that system.

          And, again, patients without insight will often regain insight at some point during the course of their illness. I know that Pete’s son, Chrisa’s son, and I have all lost insight at some point, during the midst of a psychotic break, but now have regained. Should our voices be considered unimportant because we have since regained insight?

          None of our voices are being heard, and the government and public is ignoring all of us.

  • BalanceDVoice

    I agree that people with mental illness should be able to testify. There should also be the same amount of family members to testify as well. Individuals with mental illness have a government forum, SAMHSA, through which they’ve been talking. The message is loud and clear, no medications at any cost. The numbers of people with mental
    illness who are homeless or in jails is staggering. There is a huge difference between an individual who makes a logical decision to forego the modern conveniences of life and become homeless and someone whose delusions and psychosis led them there. Statistics of how they are victimized are clear. There is also a huge difference between someone who makes a conscious decision to break the law and someone who gets arrested for disorderly conduct because they were talking to themselves outside a storefront and scaring customers away. Who will speak for these individuals? As long as the consumer movement is willing to sacrifice the sickest individuals among them there also needs to be an equal voice from families who are left to pick up the pieces each time.

    • lpogliano

      agree, wholeheartedly.

      • If you really agreed you’d let patients testify.

  • aot4tn

    “A 2006 study by the Bureau of Justice Statistics found that over half of all jail and prison inmates have mental health issues; an estimated 1.25 million suffered from mental illness, over four times the number in 1998. Research suggests that people with mental illness are over-represented in the criminal justice system by rates of two to four times the normal population.” … so how do we get any of these consumers to a committee hearing?

    • Skype, YouTube, recorded testimony, written testimony.

      If we can get a daily feed from the space station, I’m pretty sure we can manage a Skype session from prison.

      • aot4tn

        Technically your suggestions could work, but does anyone else see the irony here? Skype, YouTube, etc. for prisoners who are too incapacitated by the consequences of their severe illness to appear in person? Folks who would not be in prison in the first place if they’d only received timely treatment for their illness? Why, I know several homeless friends living under a bridge in my hometown whom I’d love to bring before that committee. When we get to missing them for a week or two, we find out they’ve been arrested for some sort of petty misdemeanor such as trespassing and are in jail again. A personal appearance by one of them would speak volumes indeed. So let’s not forget about these consumers.

    • Erika

      Considering that the DOJ reports that you cite used interviews with patients to collect their data, I see no reason why statements could not be collected and read at committee hearings. In addition, as most mentally ill inmates are in jail or prison for non-violent crimes, and for short periods of time, there is also the option of inviting released mentally ill inmates. Then there are mental health courts and jail diversion programs. And so son. It’s not hard.

  • mental health girl

    Thank you, Mr. Early for speaking to this missing important element in the House subcommittee investigating our mental health system. I can’t imagine them using the “no money” justification to rationalize not listening to the members of the one group who have personally experienced the failures of the MH system – as well as have experienced what has worked. I think there are many peers who would find their own funding to be able to speak to the subcommittee. They are silencing the one voice from which they most need to hear.

  • KateMS53

    Since these hearings have been about people like Joe Bruces’s son, the men who do the mass shootings, & like the man’s son (I can’t remember his name) who committed suicide……what information could be gleaned from consumers about how to prevent those things from happening? In most of these cases, either the illnesses weren’t yet identified or the system didn’t respond appropriately to a family’s pleas for help. We know what works when someone initially asks for help….. medical care, doctors & medication. When that’s denied as it too often is, the symptoms get out of control & bad things can happen. My daughter is a consumer too. She is also among the 1/3 of patients who’s illness hasn’t allowed her to achieve a high level of recovery. Listening to someone else’s story isn’t going to change that. And if she were asked to testify, I’d have to come with her & pay her way. So how about having her testify? How about having consumers testify who are clearly ill but are too sick to understand their illness? Those are the people Congress needs to hear from so they understand the true severity of these illnesses. A “recovered” consumer, even the ones that I also love like Dr. Jamison & Elyn Saks are not my daughter’s peers. Families are the only ones that can speak for her & I was under the impression that it was these people that these hearings have been about.

    • I’m pretty sure my children are your daughter’s peers, however. Both have Schizoaffective Disorder and can and do advocate for themselves and their peers. And we will figure out how to get them there if that’s what it takes to have a patient testify.

      • KateMS53

        If your kids are able to advocate for themselves, they are not my daughter’s peers.

        • They are only able because they have my and my husband’s support. Because they stood beside us as we advocated for them. It seems all I am reading here is that persons who are lucky enough to have fragile stability now don’t deserve to be heard about how difficult it is to keep that stability. Why is that? Do we tell the poor, stop advocating for better education, better job training, and safer neighborhoods because you haven’t starved to near death yet?

          • KateMS53

            No, but these forums have been about people who have kids who haven’t been able to get to even fragile stability They can’t talk about how to maintain something they’ve never had. It’s a different subject, a different complaint, if you will, for a different forum……I think. Pete’s son should be heard about not being cuffed, etc. Your kids should be heard about what their needs are. These are very important topics to be sure. But again, this things come after the person gets some form of stability. These forums have been about people who haven’t been able to get that far, or have gotten that far through murdering their mother. Much different topic….again….at least I think so. I’ve heard Tim Murphy be interviewed. He understands these illnesses very well. He knows what’s needed for everyone & he’s doing his best to get it.

          • Erika

            These forums have been about serious mental illness and violence, and the gaping holes in the public mental health system. Even if one is currently stable, it does not mean that they cannot speak to that. Pete’s son, Chrisa’s children, and I have experienced those gaping holes, both in voluntary and involuntary care, and most of us have seen violence against self and/or others occur as a consequence of mental illness.

    • Erika

      The fact that a patient is able to identify that they have a mental illness does not mean that their illness is not serious, was once not serious, or that they are not your daughter’s peers. Likewise, just because someone now has insight, does not mean that they once did not; just because someone is high-functioning, does not mean that they have not lost insight; and just because someone is low-functioning, does not mean that they do not have insight. Someone can be disabled by their illness, in need of assistance with ADLs, and require 24/7 care, and still realize that they have a mental illness. Someone can be high-functioning and pursuing a high-powered career and not realize that they have a mental illness, or commonly lose insight during breaks. And someone can go from requiring 24/7 care to eventually living independently. There are no easy dividers when it comes to serious mental illness.

      Here’s the other thing — the system fails everyone, even voluntary patients with the strongest advocates by their side. James Holmes sought out psychiatric care before the shooting, on his own accord, through his school’s hospital system; they responded by kicking him out. There have been other cases that have followed a similar story line: patient seeks help; patient is turned away; patient commits a violent act. The man who murdered Kendra Webdale (the namesake of NY’s Kendra’s Law) was hospitalized multiple times before Ms. Webdale’s death, for example, and each was a voluntary admission; in addition, he was on waiting lists for multiple long-term care programs that had recently had their funding slashed, and communicated with the doctors that he was not safe. Patients are frequently turned away from ERs because there are no beds, because they do not have insurance, or because they are not yet dangerous enough to be admitted. Patients are put on months-long waiting lists because there are not enough doctors, and not enough facilities. The best, long-term treatment facilities are often out of reach for the average, middle-class family. Minority and immigrant groups face language and cultural barriers. Child and adolescent patients have their educational needs ignored. Community services, even voluntary ones, are frequently non-existent. Most patients who commit suicide were seen by a mental health professional in the months before their death. And on and on. Do their stories not deserve to be heard? Are they not your daughter’s peers?

      Even in the case where a patient loses insight, many, if not most, regain insight at some point during the course of their illness. Many of these patients go on to speak about the need for more respectful treatment, more family involvement, stronger Advanced Directive laws, and so on.

      All of these stories are stories of serious mental illness. All deserve a place at the table.

      • KateMS53

        What table? These were family members complaining about SAMHSA wasting money on nonsense.

        • Many patients have similar feelings. You’d know that if they were asked.

          • KateMS53

            For the ones who have the same feelings, their message got across. Of that, I am sure. I am confident that if nothing else, Tim Murphy is listening & trying to help.

          • Erik

            And for those who have different feelings? A patient must agree with family members to be allowed to speak? No. That’s nonsense. Rep Murphy, et al is holding committee meetings on serious mental illness, and openly excluding those with serious mental illness. That isn’t OK. It marginalizes those with serious mental illness, and excludes an important voice from the conversation: those who these policies most directly effect.

        • Erika

          What table? Any conversation concerning mental illness and policy; mental illness and non-profit operations; and mental illness — period. Discussing serious mental illness without those with serious mental illness marginalizes those with SMIs, even if one means well.

          • KateMS53

            Consumers will get to speak to the president & VP on June 3rd. I have posted links elsewhere on here. I’m not going to do it again because my comment will have to await moderation. I will add, however, that if a man who’s son had to kill his mother in order to get services isn’t able to highlight the difficulty in getting services, then nobody else will be able to either.

          • Erika

            I am happy to hear that. Patients with serious mental illness should be included in all conversations about serious mental illness; anything less is marginalization.

            Then why invite anyone to speak? Why not just play clips from TV news, and read headlines from print media? The media is awash with stories like that. Why hold these committee hearings at all, if nobody will listen regardless? By your logic, we should have neither family, nor patient speaking.

            Furthermore, even if nobody is listening, even if all voices will be ignored, it does not change the fact that, if a committee hearing is held on serious mental illness, it is not acceptable to exclude people with serious mental illness. Just like it wouldn’t be acceptable to do it with any other patient population, or any other population.

  • KristenKringle

    I appreciate this post. I am incredibly grateful to patients who have the courage to speak out. I wish I had that courage. There is so much pain and stigma and embarrassment that comes with suffering from psychotic disorders, and patients who do have the courage to speak, need to be heard.

  • According to Dr. Amador’s own research, slightly less than half of all persons with serious MI have or show signs of Anosognosia.

    That means slightly more than half don’t.

    Seems we should be able to find one or more of them to testify.

    • advocate4treatment

      I think we already know what their testimony would be – the status quo. Consumers who have testified at other hearings all state that everyone, regardless of how severe the mental illness or lack of insight may be, should be able to choose whether or not they receive treatment. This has led to individuals ìn terrible situations: homeless, in jail, or worse. Until there is an understanding that some people with the most severe illnesses sometimes need help determing what is the best treatment to help them, listening to a consumer testify would bring no new information to the table. Individuals with the most severe illnesses need timely, effective treatment. If they are well enough to choose what that treatment should be, great! But not everyone has that insight and having a consumer say otherwise at a hearing is simply a waste of everyone’s time.

      • You make it sound like there is treatment readily available. All you need to do is CHOOSE to take it! Talk about ack of insight! Nothing could be further from the truth.

        • advocate4treatment

          Those well enough to choose do receive the majority of services available whilethose who lack insight neither request or receive required treatmentuntil they reach whatever level of dangerousness their states’ laws require. That is unfair and needs to change. Will consumers testify in favorof changing those treatmentlaws? I doubt it.

          • Erika

            In most areas, services, or adequate services, are not available — for anyone. Even if a patient is aware that they need help, the help often isn’t there. Waiting lists to see psychiatrists are months long, and even longer for child and adolescent patients. Quality supported and residential housing options are scarce to non-existent. ACT and other wrap around systems of care are burdened with long waiting lists and poor funding. Patients are turned away because of lack of beds, insurance coverage, and lack of imminent danger, even if they drive themselves there. Most hospitals discharge patients after a couple of weeks, at most, and insurance won’t always cover the transitional treatment needed for a safe discharge. If someone requires long-term, inpatient care, state hospitals are often either abusive, non-existent, or require confusing commitment procedures (even for voluntary patients) before one is admitted; adult residential options are far too expensive for most patients and families to afford. For patients that have insight, but also require assistance with ADLs and 24/7 care, navigating the mental health and public health care system can be daunting to impossible. Patients and families often fight for services for years and still do not succeed at securing them, no matter how willing the patient is to participate.

            I have no idea where you and other posters got the idea that insight = high functioning and access to needed treatment and services, but it is misinformed. The public mental health system fails all of us. Look at James Holmes: he sought out treatment when he still had the insight to realize something was wrong, and was instead kicked out of his graduate program without receiving intensive treatment. Look at Andrew Goldstein: he was admitted as a voluntary patient every time he needed hospitalization, he was on the waiting lists of long-term care programs that had recently had their funding slashed, and communicated with doctors that he was not safe, but he was ignored; he went on to murder Kendra Webdale. These are patients who knew that they needed help, but did not receive the services that they needed, anyways. Stronger services, not commitment laws, could have prevented these deaths.

            In addition, as I have stated more than once, insight and mental illness is not static. Even if a patient loses insight during a break, they often regain it. These patients — those who, at one point, did not have insight, but are now stable — also have a valuable insight to offer.

            As for what patients may or may not support, it has no bearing on the fact that holding committee hearings about them while excluding them is not acceptable. It is marginalization, and it is discrimination. Disagreeing with them is not an excuse for excluding them.

            However, in case you were wondering, as a patient with SMI, I support a competency based standard of forced treatment. Because of this, I do not support AOT, because AOT does not require that one be found not competent, only that one be found to have a serious mental illness that has recently led to hospitalization or incarceration that they are refusing to treat. Likewise, however, I do not support the dangerousness-based criteria of forced treatment, because it also does not require that one be found not competent. If a patient is competent to make medical decisions, they are competent to refuse treatment, even if that action harms them. If a patient is not competent to make medical decisions, however, leaving them to make medical decisions is both illogical and dangerous. Even in cases where a patient is found to be not component, however, they should still be treated with the respect that they are human, and have their preferences and needs considered, ex not being handcuffed. On a personal level, as I realize that there is the potential for me to lose insight during a severe psychotic or depressive episode, I consider Psychiatric Advanced Directives to be an important and sound component of ensuring that I receive treatment.

          • Great. The receive the majority of the woefully pitiful services that might be available. GREAT choice.

          • When you ignore and marginalize them, how will we ever know?

    • KateMS53

      It’s the half of us with family members who lack insight that were complaining about SAMHSA.

      • And many patients would as well, if only we’d let them be heard.

  • Dj Jaffe

    Disagree. The hearings are not about people with “mental illness” (25% of pop). They are about a very small percentage of Seriously Mentally Ill (5-8%), and the subset of them who lack insight into illness. Having someone in that condition testify would be akin to having someone with Alzheimer’s testify about that. It would likely be gibberish. Perhaps there is someone well enough to testify who has concern for this small population, but most of the testimony I have heard quickly vears off into how to we improve ‘happiness’, ‘satisfaction’, ’employment’, etc., rather than reducing homelessness, incarceration, violence, etc. I think Rep. Murphy is doing a spectacular job as is. That’s my 2 cents

    • Erika

      The meetings have been about serious mental illness and violence, and the gaping holes in the public mental health system. Even patients who have insight, have experience with that. Even patients with insight fall through the gaping holes of the public mental health system. Even they do not receive the treatment that they need. Even they get turned away from ERs, and put on months-long waiting lists to see a doctor. Even they can require long-term, intensive treatment and 24/7 care and not get it, because it does not exist in most areas.

      In addition, insight does not mean that one is stable or immune to the consequences of their illness. Many of the high-profile cases of violence linked to SMI involved patients who had some insight, and sought help for themselves (Homles, Goldstein, etc), and most patients who kill themselves — violence against self — have seen a mental health professional before their death. Likewise, insight, for most patients with SMI, is not static; most patients who lose it will regain it at some point during the course of their illness, and lose it again, and regain it, and so forth.

      Again, there are no easy dividers when it comes to SMI. My brother, for example, will likely never live independently, requires assistance with many ADLs, experiences significant cognitive deficits as a result of his illness, and can be violent while psychotic. He required out of home care for 3 1/2 years for safety reasons. He has insight, but is unable to seek out treatment on hie own and requires strong family support, involvement and advocacy. Where would he fit in this conversation, in your mind?

      Finally, at the core of this discussion is the fact that conversations are being had about people who are not being invited to that conversation. That is marginalizing, and unacceptable.

    • KristenKringle

      Why are you so afraid of hearing the actual voices of people with severe mental illness? Many of us have had the police at our houses, multiple hospitalizations, treated in homeless clinics,etc. I refused antipsychotics for over a decade. Now I take them. You make it sound like if people who were really ill become stable, then they must not have ever been ill.

      • Jeanette Castello

        There is a difference between family and consumer advocates that I have heard at public hearings or panel discussions.Families explain that their loved ones with severe mental illnesses and lack of insight are a small minority of those with mental illnesses who are left out of the mental health system, through no fault of their own, but because they are too ill to understand their need for treatment.   The consumers I’ve heard state that the only problem is that there just needs to be more money for more mental health services. I don’t agree since I live in a state with the third highest funding of mental health services I’m the country and yet that is all that consumers point to as the problem. All the services I’m the world are not going to help someone who doesn’t know that they are ill and in need of treatment. If only consumers would acknowledge this small group of people and not state that everyone can recover if only there were enough services because that simply is not true. Those with the severest illnesses need special care and treatment laws that don’t require that they are dangerous. I’ve never heard a consumer advocate for this small group of people who are only treated when there is a crisis, if at all.

        • Erika

          First, patients should not have to agree with you to be allowed to speak. They should not have to agree with you at all, and certainly not fully. It is never acceptable to have a conversation about a group of people if you are excluding those people from the conversation; that exclusion is discrimination, and marginalization.

          Second, many of us are willing to have conversations about forced treatment, but are instead put on the defensive because we are forced to fight to be heard at all. Look at the comments on this post. The message is that, if patients do not agree with family advocates 100%, they should not be allowed to speak; if they agree, there is no reason for them to speak; and if they can speak, then they are in a separate category than those being discussed, so there is no point in having them speak. The comments make it strikingly clear that they do not want patients to speak or, if they are allowed to speak, that they do not actually consider what patients have to say as being worth listening to. You cannot ask that patients consider what you are saying, when you refuse to listen to what we are saying.

          Patients who can speak are not in a separate category from your loved ones. We are not all high-functioning, recovered, well-employed and having our needs met with once a month outpatient visits. My brother, for example, has insight into the fact that he has a mental illness, and that he needs to take his medication. He also requires assistance with ADLs, will likely never live on his own, cannot drive, has only had supported employment positions, and struggles with significant cognitive deficits related to his illness. He required out of home care for three and half years because of violence against others and himself, and still requires wrap around outpatient services. Without strong family support and involvement, he would not receive the treatment that he needs. But he has spoken to social workers, police officers, and the general public about his mental illness. Is insight not valuable? Is he so different from your loved ones that his opinions on how he has been treated should not be heard?

          I am currently a college student, and have both worked and lived independently. I am in full control of my medical treatment. I am “high-functioning”. I have also, however, experienced a severe, prolonged psychotic episode that posed a daily threat to my safety. I required intensive, wrap around care for two years of my life, as well as occasional inpatient stays and stints in intensive outpatient programs, to simply survive day-to-day. I have experienced episodes severe enough that I was not able to act fully on my own behalf, and required support and assistance to get the help that I needed (and often did not get that support and assistance). I have been held in ERs on 72 hour holds. Am I so different that I have no insight to offer?

          Or watch Minds On The Edge, which Pete was featured in. That program included two patients with serious mental illness, both of whom who were high-functioning and both of whom have completely lost insight in the midst of a psychotic episode. Both are in the legal profession. One supports forced treatment, and the other does not. But are both so different that they have no insight to offer?

          Likewise, I know of patients who have minimal insight and only take medication because it is a requirement of them living at home, but who also attended college and hold down a job. I have known of patients that have been in prison and on the streets, that need more services than they are getting, but who realize that they need help. I know of patients who alternate between complete insight and complete lack of insight. And so on.

          The bottom line is that serious mental illness is serious mental illness. There are no easily established sub-categories, regardless of functioning or level of insight and, even if there were, those with serious mental illness would be unlikely to stay in one throughout their life. We all cope with the same systems, and the same fear and pain. We all use the same mental health system, and we all interact with the same professionals. Family advocates need to realize this, and listen to those with serious mental illness who can speak because, while all patients are unique, those patients who can speak are not somehow in some separate category from your loved ones. There are experiences that we all share.

          Because of that, even if the patients invited to speak do not agree with you on forced treatment, even if they refuse to have that conversation (which, if family advocates would be willing to consider what patients are saying, I do not think that refusal would be there), there are other areas of policy and practice we can still talk about. For example, Pete’s son told the officers not to cuff him, and expressed that type of force would escalate the situation. I have heard every person with serious mental illness say the same thing. Why don’t we talk about better policy and training for police dealing with those with serious mental illness? Andrew Goldstein went to the ER only hours before Kendra Webdale’s death stating that he felt he was unsafe, but was sent away because he was not unsafe enough to be admitted. I have told doctors over and over again that I am unsafe, but have only been listened to when I have gotten to the point I have developed a well-thought out plan for killing myself. Why don’t we talk about how the dangerousness criteria hurts all of us? In the Minds On The Edge Program, the patients who spoke also spoke of mistreatment in hospitals and in the forced treatment process, and the patient that is against forced treatment experienced severe mistreatment. Why don’t we talk about abuse in hospitals, and how to improve training among staff and mental health professionals, especially when it comes to dealing with patients being forced into treatment? Why don’t we talk about what approaches, what methods of treatment, were helpful or harmful, regardless of the voluntary and involuntary status? Why don’t we talk about what it’s like to be violent in a psychotic state, and what the best way to deescalate the situation? These are things that help everyone.

          But you have to be willing to hear us, and to consider that our voices apply to your situation.

          • KristenKringle

            Erika, beautifully written as usual. You have a gift with words.

        • KristenKringle

          I understand what you are saying but disagree with the blanket generalizations that that is the way to respond to people who are too ill to recognize the need for treatment. It’s the type of response that actually pushed me farther away and ensured I would lie to them and tell them whatever I needed to do to get away.

          The more they threatened and pushed the more I flushed medication down the toilet. If I ever end up in AOT I would be one of those who are currently in hiding to get away from it. Threats and force may work for some without insightful it will not be the correct approach for others who lack insight. My medical records say patient steadfastly refuses antipsychotics. I take them now because a different approach was tried.

          There should not be a one size fits all approach to those who refuse treatment.

    • I’ve posted the links above to your comment where persons with Alzheimer’s have testified in hearings before congress about Alzheimer’s services and treatment. Where persons with developmental disabilities have testified before congress about services for persons with developmental disabilities.

      What are you so afraid of, DJ? That someone who has a serious mental illness might actually make sense? God forbid.

      • BalanceDVoice

        What we are afraid of seems to be something that escapes you in your quest to negate everything that family members of individuals with illnesses that are so severe that it has resulted in homelesssness, incarceration, or death. I am glad that your children have achieved some stability, fragile as it may be. My family member has not. And yes, I’ve advocated for him every step of the way, right beside him while he adamantly refused services due to his lack of insight. He’s been incarcerated. He’s also been homeless. Twice.
        Contrary to what’s been posted here, individuals who are incarcerated do not necessarily spend “short” time periods in jail. The fact is, people with mental illness spend longer time periods in jail for similar crimes than people without mental illness. They also get singled out for taunting by other inmates and by jail guards. They are often put into solitary confinement either because they can’t follow the rules or their own protection. Solitary confinement. They deteriorate rapdidly.
        I haven’t heard you say that your children were ever homeless. I can tell you that I’ve seen a post on SAMHSA’s Recovery to Practice site where a consumer indicated that he had met homeless people who were enjoying the sunshine. Well I can tell you that homelessness for the mentally ill also includes hunger and deprivation. They are the victims of crimes including assault, being raped, set on fire, and murdered.
        As noted above, consumers do have forums through which they have made their voices heard. Their message has been loud and clear, no forced treatment ever. Do I believe they should be allowed to testify, yes, absolutely. They also seem very willing to sacrifice the sickest among them by glossing over issues such as homelessness and imprisonment. “It’s usually for short periods of time”. “They are out in the sunshine”. Until I hear them acknowledge that they have counterparts whose illnesses are so severe that there are times when involuntary treatment is indicated, whether they are deemed competent or not, then I will continue to fight for my family member, and others like him.
        I will remind you that my family member has been homeless twice. In fact, is homeless right now. It kind of makes the posts arguing about getting everything you want pale a bit in comparison.

        • Actually, one of my children was homeless. That’s how she came to be my child. We took her in. I’m her guardian.

          • BalanceDVoice

            Right. I gave birth to my child and raised him.

          • Erika

            What is your point? Do you realize that you are invalidating and dismissing each and every parent-child relationship built by adoption? Do you honestly think that because one does not actually give birth to their child, or begins parenting them at an older age, that they are less dedicated, less protective, less of a family? Do you think a lack of shared blood relation makes one less of a parent? Do you realize that between 60-80% of adopted children have a mental illness? Honestly, what are you insinuating here?

            Do not be so blinded that you become illogical.

          • BalanceDVoice

            My point is quite simple. She indicated what her relationship is to her children so I indicated mine.

          • Erika

            There is no difference in core relationship; the only difference is in how that relationship began. You are a parent, she is a parent; her child is her child, your child is your child; you have parented your children, she has parented her children; and so on.

            Her point to you was that one of her children had been homeless, with serious mental illness as a contributing (though not primary) reason, and with serious mental illness as factor that made them [more] vulnerable. This was in response to your comment assuming that her children had not been homeless. Her children also have a history of episodes of lack of insight, violence, law enforcement involvement, hospitalization, etc.

            She still supports patients being included in conversations about themselves.

          • BalanceDVoice

            I am quite capable of understanding what I read. I also did not assume that her children had not been homeless. I said that I never heard her say that they had been thus giving her the opportunity to clarify it if she chose to.

      • KateMS53

        There is a subset of us who only want doctors & families speaking for our children/family members. If you want other people with MI speaking for your kids, there has been plenty of opportunity for that & now, the people you want speaking for you will have the president’s ear. You can’t go any higher than that & yet you still feel the need to complain that we got an opportunity for our kids’ story to be heard. If you are able to use the term “mental health”, your kids are not my daughter’s peers. With that, I wish you & your children well. I hope the people who speak to the president are able to get your message across better than the folks who spoke at Tim Murphy’s events since they apparently failed you terribly.

        • Erika

          People with serious mental illness should be invited to speak every time serious mental illness is discussed. Talking about a group of people while excluding that group of people from the conversation is NEVER acceptable. This is true even if you disagree with them. There has not been “plenty of opportunity” for that to happen.

          Refusing to listen to someone because they used the term mental health is illogical. Even within the comments on this posts, a variety of terms, all meaning the same thing, have been used. Self-advocates have used the term patient, and family advocates have used the word consumer, and vice versa. And so on.

          Who do you define as your daughter’s peers? Is someone a peer of your daughter only if they currently do not have insight? What if someone does not have insight, and is refusing treatment, but also goes to college and holds down a job? Are they your daughter’s peer? What if someone has insight, but requires day to day assistance with ADLs, will likely never be able to live in an independent, unsupervised environment, and is only receiving care because of family involvement and advocacy? Are they your daughter’s peer? What if someone has experienced episodes in which they were homeless, lacked insight, and were forcefully treated, but has since regained insight and is stable? Are they your daughter’s peer? What if someone is homeless and/or in prison because they are not receiving services, but has insight? Are they your daughter’s peer? Do none of these people have anything in common with your daughter? Do none of them have insight worth listening to, in your mind?

        • I just find it terribly sad that you don’t think that, out of the approximately 3 million people in this country that have schizophrenia, none of them are worth hearing from.

          • KateMS53

            I stand corrected. Peers should have been included….the ones who get the money for the Alternatives conference and the organizations that get funding who are blatantly anti psychiatry would have been great peers to have on the panel since that’s who the complaints were about. It is a shame they didn’t have to personally explain themselves.

  • Pegasus

    Many people disagree – but ALL Americans, mentally ill and mentally retarded, are allowed to vote! State hospitals have been known to take the very ill on outings to vote at the polls!

    That said, the literate among us are capable of writing, emailing or phoning our congressional representatives every day! How can we not be heard? Every constituent has the right to bombard their elected officials 24/7 if done legally and respectfully!

    I see no problem in getting messages across if group and individual determination is exercised.

    If every family member of an M.I. person phoned or wrote letters every day, thats millions of people, be assured the federal gov’t would take notice!

    Then. encourage and help if needed, all the mentally ill folk you know to do the same. Have a spaghetti dinner to raise money for stationary and stamps if you have to!

    Why aren’t the mentally ill being heard?

    No one is helping them shout.

    And too many advocates and familiess are complaining, instead of

    devoting 2 hours a day to contacting their representatives.

    If, for every blog on this and the dozens more mental health websites,

    there were 5 contacts to gov’t officials, soon those m,aking the laws would be woken up.

    Many voices cannot be silenced –

    How easily big groups like NAMI and the newly formed BC2mind could circulate a pettion for the M.I. and their families to send to Congress!
    One proven method for motivatiing the mentally ill toward wellness, is to give them the self esteem to help themselves and others. Once the talking stops, and the real thought-out action begins, thats when victorys are won. For many, mental illness is still on the shelf; it is the duty of those who care to show how to bring it to light, and how, after all, it is nothing to be feared, certainly not a shameful thing, and if we don’t act now – future generations will be locked, up, shut out, untreated, – and we can watch it all from our graves.
    I think I’ll go to city hall now, and get the current addresses for my senators and congressmen.

  • Terri Wasilenko

    Wow the information that is contained in these posts is AWESOME!!!

  • Bruce Hanson

    While it is undoubtedly important that the congress and the president hear from the mentally ill and their families, we need to find a way to approach this problem at the root. I love petunias and take care of them by removing the dead flowers, but the real health of my flowers starts under ground. Congress will continue to provide lip service to the plight of the mentally ill until our country’s people can relate, when the mentally ill become US instead of THEM. We need to find a way to temporarily lift the stranglehold that HIPAA well meaningly has on information and allow a moviedocumentary to be made that sees the world, the daily grind of staying this side of sanity without a clear vision of hope, through the eyes of a clientconsumer. (Hate those terms) I can tell others about this problem 24 hours a day but until they see it and believe it from the inside out, nothing will change.

  • BalanceDVoice

    I don’t need to go to the links to believe you that patients spoke at the hearings. However, I can also tell you that someone with severe Alzheimer’s or severe dementia by definition will not have the cognitive abilities to be able to testify. The key word is severe. In which case someone would have had to testify on their behalf.

    • Jeanette Castello

      Agree, and that is the pointthat those posting from the consumers pointof view refuse to accept. Theycould testify whattype of treatmentworks when a person is well enough to understand that they havean illness and can discuss various options. When those with the mostsevere illesses are not able to engage in treatmentdecisions, treatmentshould be provided, they shouldn’t be abandoned by our mental health system. At the very least, when consumers testify they should statethat they are not representing those idividuals with the mostsevere mental illnesses

      • Erika

        First, the difference between severe Alzheimer’s or severe Developmental Disabilities and severe serious mental illness is that the latter can get better, while the prior two cannot. There are many patients who, at one point, lost insight and did not realize that they were ill, but eventually regained it and now have enough stability to speak. It’s not an uncommon story. Why can’t those patients speak to the experience of not realizing that they were ill? Because they now realize that they do? Should they have to qualify that they do not understand what it is like to not have insight? That’s illogical. They still had that experience.

        Second, severity and insight do not necessarily share a linear relationship. I know patients who lack insight and only accept treatment because it demanded if they want to live at home, but who also are able to go to school, work and socialize. On the other hand, I know patients who need assistance with ADLs, who will never go to college, who require supported work situations, and who will likely never live on their own, but who understand that they are ill. Which of these patients are more equipped to talk about severe serious mental illness, in your opinion?

        Third, these hearings have not been about patients with serious mental illness that lack insight. They have been about serious mental illness and violence, and serious mental illness and SAMHSA. While this includes those without insight, these issues are not specific to those who lack insight.

        With violence, both Holmes and Goldstien (Kendra Webdale), for example, knew that they needed help and sought it out, but they were ignored and went on to commit violence against others. My brother realizes that he is ill, but has a history of violent behavior while psychotic that has necessitated law enforcement involvement more than once. I have had episodes that have triggered rages that led me to commit violence against self and property. I have a close friend who has exhibited violence against her family, and who still realizes that she needs help. These are examples where violence and insight — and, in the case of Goldstien and Holmes, high-profile violence — co-existed. Why could they not speak about the experience of violence and mental illness?

        With SAMHSA, all persons with serious mental illness — and severe serious mental illness — access the same SAMHSA-funded mental health system, and that system consistently fails persons with serious mental illness, regardless of insight. Holmes and Goldstein are two examples.

        Finally, again, it doesn’t matter if you agree with a patient or not. It is never acceptable to talk about a group while excluding that group of people

        • BalanceDVoice

          And again, SAMHSA does not speak for people who are too ill to speak for themselves. It doesn’t matter if you agree with families or not. Someone needs to speak for them and so far the consumers represented by SAMHSA have not.

          • Erika

            I never disagreed with you on SAMHSA. My point is that SAMHSA has an impact on all persons with serious mental illness, including those with insight and those who have regained [though once did not have] insight, and, thus, the presence of insight does not make one’s voice irrelevant to be heard at a hearing about SAMHSA. Likewise, violence in serious mental illness can occur in those with insight, and those who have regained insight, and, thus, just because one now has insight, does not mean that they should not be allowed to speak at a hearing about violence and serious mental illness.

            It’s not about me agreeing with families or not SAMHSA, or forced/involuntary treatment, or any other policy point. I never have said that family members should not speak, nor have I said that they must agree with a certain viewpoint to be allowed to speak. I want family members, of all perspectives, to be allowed to speak, even those that I disagree with. I am asking — demanding — the same respect back for consumers. It doesn’t matter if you agree with patients or not, it’s unacceptable for you to hold a meeting about them without inviting them to speak. Period.

          • BalanceDVoice

            And I have said that individuals with mental illness should be allowed to speak. Clearly. Several times.

          • Erika

            Yes, but others have not, and others have said quite the opposite. Or, if they have agreed that consumers should be allowed to speak, it is with the caveat that they should only be allowed to speak sometimes, or that, regardless of their experiences, they must state clearly that they are in some arbitrary, separate category and what they say is not actually relevant to what is being discussed. All of this is false or unacceptable, and that is what my posts have been in response to.

  • Bruce Hanson

    Interesting, unsurprising, but somewhat discouraging. Since I live in Colorado, I tried to contact Diana DeGette. As you probably would expect, since I don’t live in her voting district of Colorado, the software threw my e-mail out. I called her office this morning. In similar fashion, I was received non-committally, and told they would take my name and phone number, and someone would call me. Any Bets????? You and I both know that won’t happen. In theory, the powers that be say they want input, but the reality is, don’t buck the status quo. I live in the home of the National Western Stock Show and love bucking. Need to find a new door to knock at.