I published this blog — OUTPOURING OF FRUSTRATION, WHAT’S NEXT? — the first time on January 24th, 2011 and was struck when reading it this week by how little has changed. Although it has been two years, I could have taken the date off this blog and published it as if it were new. It was written after I appeared on CNN’s State of the Union news show. I was a guest with my friend, Fred Frese, because of the January 8th, 2011 murders in Tucson, Arizona.
This week, I have received several emails from frustrated readers who want to do something, but don’t know what to do. Reader Joseph Meyer offered this suggestion on my Facebook page:
Annual NAMI Walks are not going to get it done–they’re just not enough! Facebook posts are certainly not going to get it done. The GLBTQ community has made huge strides in the last 10 years by getting in the face of people and basically saying “we’re here and not going away, so you damn well better get used to us.” Psychiatrists, psychologists, patients, caregivers, family, and friends need to rally publicly about the discrimination we face and do so loudly, regularly, and without regard for offending anyone. They GLBTQ gave us a model for success and we need to follow it.
I once asked then-Virginia Governor Timothy Kaine why mental health was such a low priority in Virginia even after the shootings on the Virginia Tech campus. As long as there is no national, mental health PAC that makes political contributions or a mental health group that can deliver votes — mental health is doomed to stay at the back of the line, he candidly told me.
A possible solution would be for groups such as the National Alliance on Mental Illness, Mental Health America, the National Alliance for Research on Schizophrenia and Depression, the Treatment Advocacy Center, the Depression and Bipolar Support Alliance, the Bazelon Center for Mental Health Law, and the Depression and Related Affective Disorders Assocation to put aside their individual differences and agree to meet together as part of an umbrella lobbying group for better mental health care. Their influence would grow if such organizations as BringChange2Mind and the Rosalyn Carter Center joined in. There are dozens of advocacy groups scattered across our country that could be part of a larger coalition. If other stakeholders, such as the National Sheriff’s Association, American Bar Association and American Psychiatric Association, joined in, then politicians might finally start listening.
Together, these organizations could afford to fund a PAC and could deliver votes. When Judge Steven Leifman forced all of the different stakeholders in Miami to sit down and begin working together, progress was made. Why aren’t we following that example on a national level?
FROM MY FILES FRIDAY: OUTPOURING OF FRUSTRATION, WHAT’S NEXT?
Published January 24, 2011
I have been inundated this week with emails, mostly from parents and family members, expressing frustration and anger about our broken mental health care system.
Here is a sampling:
*You touched my heart today on Sunday’s CNN show. I tried to get my son help over and over. He is now in prison. .. What now? No education, no job, a criminal record….no help.
*Unless someone has had a mentally ill family member, and had to go through this, they just simply don’t have a clue, so it’s very easy to pass judgment. My Mom would frequently go off her medication. My siblings and I struggled with this for years, and the upshot is, an adult has a right to be mentally ill and cannot be forced to take medication. I actually had someone who said, well you need to just force her to take her medication. Oh yeah, that works!
*My anger is not with Jared Loughner’s parents. My anger is directed at our national mental health programs that come nowhere near bringing awareness to the public – so that family members and loved ones can identify mental health problems, before it is too late. I am also angered at laws that protect the mentally ill – which allows them to reject necessary intervention.
*I’m sitting watching you with tears – State of the Union – Candy Crowley/CNN – I am the sister of a paranoid-schizophrenic man who committed murder in 1977 when he heard voices in his head and couldn’t be stopped -Our lives were shattered and we had to stay virtually silent for years because no one wanted to hear our story – because it was mental illness, we were shunned.
*I am desperate. My daughter C. graduated from high school in May ’09. She graduated 3rd in a class of 500 students. She was chosen to give the farewell speech at the graduation ceremony. She went off to a good university with a top scholarship. Six days later she called me and I knew something was very wrong. She is unsuccessfully battling Bi-Polar disorder as I write this. The same disorder her father was diagnosed with nine days before he committed suicide in 1996. ..
*I was in the middle of crying for my son, his 39 birthday is tomorrow. Yes, the illness is merciless. I am a member and contributor to NAMI. I just don’t see any big nationwide effort coming from them. The lobby is not strong enough. I wonder how many more tragedies like the one in Tucson, that involve well known people ( thousands die every day on the streets of our cities and in the homes from violence, nobody bothers to give them a minute of silence! ) is needed before we as a society bring mentally ill into the fold of empathy. This is not about a group here and there, it has to be a movement of most of the people. .. If medical professionals united and stepped in, our world would be a different place. Maybe then a lot more money would be given to the brain research, and there would be help for our loved ones. In comparison to cancer research, the money given to the brain research is dismal.
*Every single day we fear the phone call to come that our dear daughter, our only child- has died. She is 34 and we love her so much. She used to LOVE FAMILY and LOVE US. And now – she is alienated from us and we are scared. She has so many problems.
*We have a 39 year old son who has a mental illness and is not on medication. We tried a NAMI support group and didn’t find it helpful. Everyone sat around meeting after meeting just repeating all the sad stories. I don’t know where to get help…My son is in denial with his illness. He is not a threat to anyone and in years past, we had called police and mobile crisis and they said there was nothing they could do. In fact, one counselor told me he has a right to his delusions…
*Our loved one is 32, BP, has tried to kill himself five times. During his last suicide attempt in June, he’d found a gun, but it wouldn’t fire. Fearing he’d find another way to harm himself, we called 911 and when two police officers arrived, he decided on suicide by cop and came out of the house pointing the gun and yelling, “Shoot me. Kill me,” and one officer did shoot. It’s a miracle he survived. He spent time in the hospital healing before being declared mentally insane…Once he’d been stabilized, he was sent to jail, charged with 2 counts of attempted assault on a law enforcement officer, 2 counts of armed criminal action, 1 count of unlawful use of a weapon and since a third officer rolled his car on the way to the scene, a charge of causing serious physical injury to an officer reporting to the scene.
*My son died of suicide. He was 36. I travelled a long road of mental illness together with him. The mental health system failed us. It is a long story and I will not take your time for writing about it. Suffice it to say that my son was a sensitive highly intelligent child and adult, diagnosed with Major Depression, Dysthymia, Anxiety, Borderline personality disorder, Obsessive compulsive personality disorder, non 24 hour circadian rhythm, chronic nightmares and sleep apnea. In addition he had chronic pain in the thoracic area for which he was on Fentanyl. We were with psychologists who did not know how to address my son’s problems. He was afraid to go to big hospitals where there might have been professionals who new how to use DBT to help him, he was afraid they would tell him that he was crazy. He was not, and your son was not either. That word scares general public and medical professionals. I can see a lot of smaller attempts to help mentally ill. There is no big comprehensive movement to do so. Can you or somebody you know, start the movement and get millions of us parents to join you, we are a huge population that wont to do something but don’t know what to do and where to turn?
With so many people suffering, with so many people seeking help, the question now becomes: what’s next?
The Tucson tragedy has gotten the nation’s attention. There have been countless news articles, TV reports, much talk on the radio. My good friends at Fred Friendly Seminars persuaded PBS to rebroadcast the Minds on the Edge debate nationally to encourage debate about civil rights laws, a lack of community services, and our failed system.
But how do we change this conversation into action?
About the author:
A hearty THANK YOU and thumbs up to Pete Earley!
14 years ago in 2000, I started my memoirs with a statement
in the first chapter – ‘the mentally ill are the last minority that must march
in Washington for their rights’ and went on to cite the blacks, gays and women.
Without money to publish, social standing to preach, power to position myself,
academic high degrees, and only a mentally-ill-leg to stand on, I could only hope. Over the years I
wrote guidelines for mental health treatment reform, and outlines for public school education.of M.I. issues, which I floated to the wind, as few took interest. Why, of course, a huge coalition is needed, lets hope one so large, eventually that AARP will ask us to lobby for them!
I can finish my memoirs now, as I have faith and confidence that those greatly enabled, armed with political backing from kindred action groups, a firm platform that merges individual and community’s needs, backing from at least half of Hollywood,and access to private and corporate funding. will convince the American people that treating and educating well on mental illness is in the best interest of everyone;s well being – and if it must be said – safety.
My hope is to start prayer circles to lift up this most noble long overdue co-operative nationwide movement. For those of us who come from long lines on both sides of the family with cousins and uncles and grandchildren not born yet,
carrying genetic markers, showing scars from generations of hopeless suffering,
know that our gratitude can never fully be expressed.
There is no greater love, nor a more honorable vocation, than to devote
oneself to alleviating the suffering of another.
Godspeed, and like Obama would say – Onward!
” 2013 – the year Americans formed a coalition that led to mental health
and education reform” Believe it, and we can do it!.
,
Help me get started, my email is horsepony@juno.com
I think we need to take a lesson from the very successful gay movement. It used to be tabu to be gay but now it is widely accepted. They vote and support candidates. NAMI national, state NAMI’s and local NAMI’s are too focused on their programs and raising funds. There must be a national movement that focuses on changing laws in all states. There has to be funding nationwide like California’s Prop. 63 which was passed in 2005 with a 1% tax on people earning over a million dollars a year. There must be funding for research for genetic causes, research for new meds, functional imaging, better supports and housing programs in the community. The families are also victims so they need to raise their voices and speak out without being ashamed because a relative has a brain disease. Medical and psychiatric services need to be integrated and electronic records need to be shared by both systems. Stigma has to be addressed and the public needs to be educated about the warning signs before something terrible happens. Buying a gun should not be so easy. Violence on TV, in movies, and video games needs to be closely monitored. It is not good for young minds to see and hear violence every time they turn the TV on and go to the movie or play a video game. Most of all more psychiatrists, therapists, and case workers need to speak out and make their voices heard to support such a movement and get involved with it. Of course judges and law enforcement need to be trained and educated since a lot of the calls law enforcement go out into the community on are for a mental health crisis. The families and consumer survivors need to stop speaking about different approaches and join hands for the good of all who need help but may not know they need help. NO it is not OK for someone to refuse help who may need it so they don’t become violent. The public has a right to feel safe.
Yes the public needs to feel safe but individuals shouldn’t be placed in hospitals that provide substandard care and with little access to a Quality Assurance protection agency in which complaints can be made. I can empathize with individuals being placed in such a situation. Once again, the culprit is a broken mental health care system.
re: KristenKringle
Terri
Concerned Mom,
Most people with mental illness whether they receive treatment or not are not violent. So, yes I do believe people should have the right to refuse treatment as long as they are not hurting anyone. Otherwise, you might be next. Someone might decide you are weird and ask that you be locked up, would that be okay? I don’t hurt people, so I think that I should have the right to be left alone if that’s what I decide.
Mr. Earley,
I thiink that aligning yourself with organizations like TAC negatively impacts the support you get. Even my psychiatrist finds them to be extremist and isn’t a fan. I have a real problem with TAC because they take newspaper articles with the words mental illness + crime and put it on their website. Do they investigate each of these situations to see if mental illness caused the violence? Wouldn’t that be very important information to know? Or is mental illness always the answer? Not just good people get mental illness. There are also people with mental illness who are bad people and who know right from wrong and choose to do wrong. It’s important to know in each of the situations, before mental illness is blamed, to know if this person knew what they were doing.
I think improvements in mental health care are needed. Some of the psychiatric hospitals that exist are horrendous and abuse patients. I have seen it with my own eyes. I wish there were more checks and balances on psychiatric care, because once the door locks all kinds of things go on that should not. The answer is not taking away more rights of patients and subjecting them to bad care. We need investigative journalists going undercover in some of these hospitals. The results would shock you.
Some of the groups listed do not believe that mental illnesses exist but are just behavioral health problems that are only to be addressed if the individual chooses to seek some type of help. Because our mental health system follows this philosophy and the majority of funds are provided to those with minor problems, individuals with severe mental illnesses are left out in the cold since they are too ill to seek help on their own. Families also suffer as most of the comments you posted from your original blog shows. If there is any hope to change our current broken mental health system, a basic understanding that severe mental illnesses do exist and should be given some priority in funding for treatment first needs to be agreed upon.
Advocate4Treatment,
Of the organizations that Mr. Earley listed, please clarify which of these do not believe mental illness exists?
Do you realize that you talk about people with serious mental illness as a group, rather than as individuals with individual thoughts and feelings? This is the problem. We are not seen as people. I have a diagnosis of a severe mental illness. I take medications. I feel exactly the same way about forced treatment unmedicated as I do medicated. You cannot make generalizations about patients the way that you do. We do not all think the same way and our illnesses do not render us all vegetables. Severe mental illness does not always affect every thought and feeling I have, contrary to the way you present it. Even when I was psychotic I knew when I was treated badly, and I remember every minute.
The people who advoacte for forced treatment need to spend some time seeing the places the patients are committed to, and advocating for improvements with the mental health care that exists. I would rather be homeless than in many of the psychiatric hospitals that exist. I would rather be in a regular hospital than homeless. Bad care exists. Psychiatric patients are often abused and treated like garbage. What is not needed is more bad treatment. We need to improve what already exists. It’s interesting that the homeless often do not fight to get out of regular hospitals (ask a hospitalist), yet they often fight to get out of psychiatric hospitals. I always knew when I was being treated respectfully and when I was not, whether I was medicated or whether I was off my medication. I wouldn’t treat a dog the way I saw patients treated when I was inpatient. And, that was in 2002, not so long ago. We have to do better.
Yesterday (1/4/13), Gabby and Mark Giffords met in Newtown, Con. with grieving families and government officials.The Giffords talked about changing gun laws and increasing awareness of mental health issues in society. If this high profile couple could join other media notables and grass root organizations in pursuit of change, maybe this new founded coalition could make a major difference in our country. I hope so. I don’t want this tragedy (or others in the past) to be a missed opportunity for bringing change to an ineffective mental health care system. It pains me that change often happens this way.
Terri
Keep talking Pete! I think you are right. We (all of the advocacy groups and service providers) need to join forces so we will be heard. We can raise our voices with little Cindy Loo Who in Whoville and together melt the Grinch’s heart. the NAMI 2013 National Convention Theme is “Working Together”. When we look for opportunities to partner with other groups they are numerous.
Sorry for the duplicate posts, didn’t realize the first one went through.
If we blame mental illness for Newtown without knowing that mental illness is the cause (and we don’t know it’s the cause), then we tar and feather an entire group of people, most of whom are not violent. It will lead to more people avoidng treatment. That would be sad.
Lotsa good points mentioned above. Reality is – the M.H. system does not serve
the patients’ needs, consequently, does not operate in the public’s interest. Call it an oversight, negligence, violation of human rights, outright breach of Hippocratic oath, crime against humanity, or all of this, It is a DISGRACE.
Squabbles about the existence of M.I., who gets forced treatment, who’s to blame for what, who’s stigmatizing who, what % of mentally ill are violent, to call the cops or not,and 1001 more – -are for the hold button. All these things and more can be addressed AFTER a coalition of parties agreeing on the core issues – improving mental health care and educating the public – is organized. Equipped with a platform, appropriate committees, national sponsorship that includes politicians, medical professionals, civil sevants such as law enforcement and teachers,and the interested public, a plan of actions can be put in place.
Every self-claiming MI advocacy group shoud jump on this opportunity.
Its like – ‘put your money where your mouth is’ type thing.
If you check the Declaration of Independance you will find signatures from all walks of life, backgrounds, national origins, cultures, religions and political views.
Somehow, they got a country organized !
The common thread – better MH care, and public education.
Come together now – work on details and how-to’s AFTER the coalition is up and
running, strong, commited, and supported.
If the GLBTQ is offering organizational direction, it should be taken. Bless their sweet, dear hearts, as homosexuality for many years was listed as a mental illness. The gay and lesbian communities are very brave people. Not only do they pursue their rights, they have done so under active stigmatization.
Their courage sets an example for the many families of mentally ill who endure
shame and social scrutiny from a public that wants to hold them accountable.
All this can change – but not without united voices in powerful numbers.
Listen to Pete – to the GLBTQ that has been there and done it –
Do not fear a word spoken in stigma, because many families acting as one,
will be too convincing for the fallacies behind stigma to speak against.
Frankenstein-ish mental illness is on its way out. Usher in the truth –
that mental illnesses can be treated, can be prevented, and can happen to anyone,
The sad but true is that the medical business and drug companies make more money by inventing treatments that don’t work, and drugs that don’t come close to a cure. And the prisons do pretty well, too.
The broken mental health system can be fixed, but not without the APA’s involvement. Accountability has been forgotten.
Everyone has mental health – whether its good bad or in between.
To stigmatize or ignore such a thing,as basic as common mental health
is to be a fool. And for families, communities and a whole nation to care
little for mental well being, I would reason that the road to ruination will be their destiny. .