Outpouring of Frustration, What’s Next?

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?

I have been invited by the Congressional Mental Health Caucus in the U.S. House of Representatives to discuss mental illnesses, specifically stigma. It is an opportunity for me to make recommendations to the staff members of our congressional leaders.

I welcome your suggestions. Tell me what message you want me to deliver. Tell me your ideas.

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.

  • Colorado

    Re-open all the hopspital phys beds that have been shut down throughout the country. All Hospital ER’s and staff should be crisis mentally ill trained with proper trained staff on call, 24.7. Club House facilities should be built in every county. Anyone who has a AXIS I diagnosis, should ultimately be put on Medicaid, so medications are available asap. Every Police officer should be CIT trained, not just a few, it should be mandatory training. Change the laws, no one in a manic breakdown state, can be fully stabilized in 72 hours, patients should be kept until they are fully stabilized, this revolving door effect, is not cost effective and the consumer is still sick. NAMI Family to Family needs funding to offer up more classes to educate the public. POA should be discussed with family members when their love one is sick and over the age 18, powerful tool, in helping their love one seek the urgent care needed. Local County Mental Health should accept all times of insurance. It has been proven by our best of the best Doctors, that 85% of the mental inflicted consumer can be treated successfully, its time to do that, not just our country but for the consumer, they deserve to live a great life just like the rest of us.

    • Tricia

      San Diego has shut down two of three major psych hospitals that were publically funded, now they have only one Alpine Special Treatment and it is difficult to access since it has a waiting list. As our population increases the amount of resources continues to decrease. My son is a success overall due to good care from the system..the public system worked better for us than private insurance..Private insurance …does not care,, they just want to get these people off of insurance..but the public sector as long as you find a way to put the person in charges’ job in check it is easy enough to get access, but they try to dodge you. The game is tough like a complex game of chess..you have to checkmate the person in power who will help you only to save their own ars. I told the County my son would cost them between $500,000 to 1 million dollars if he was not treated that we could begin from now and they could contact me in six months and we could tally the money…One month stay was over well over $60,000 that was back when and did not count for other costs of public ambulance or police.. The local news station here estimated last year the cost of not treating a homeless person or (many of whom are mentally ill is just under $700,000 for one person) this is very true. In 2010 the costs are closer to $80,000 a month just for hospitalization/stabilazition.. With good care these costs decrease significantly and there is much better quality of life for all. Currently my son’s cost are about $12,000 per year maximum far cry from $700,000. Proper care will reduce the costs….This is why I am all for public healthcare as well on another note.

  • Linda Daxon

    I finally caught your USA Today article. It is inspiring the way you have found the silver lining in your son’s dark cloud (i.e. becoming such an effective advocate for mental heath reform). Keep up the good work.
    Linda D from OKC

  • JD

    In Kentucky, a person may petition a judge to have a mentally ill person evaluated at a state psychiatric facility. Unfortunately, unless the patient is at point of suicide or murder he/she does not meet the standard of being a danger to himself or others. If there were more facilities perhaps this standard would not be so restrictive.

    My son cut his fingertips with a knife. To stop the bleeding he used a lighter to sear the wounds. He told the psychiatrist that he cut himself while doing some wiring and was sent home after evaluation by cab.

    The next day, he was arrested on a city bus. While being questioned by police about missing transfer tickets, he pulled a butterfly knife out of his pocket. He was arrested and taken to jail for possesion/concealment of a deadly weapon. At his arraignment the judge ordered mental evaluation while he was incarcerated.

    Since it was the weekend and close to the holiday, this was not done. Again, I suppose there were too few resources. He was in jail for 4 days and he received no psychiatric evaluation. Every day, someone from the jail called to deliver information about posting bail.

    It is unfortunate that there are not more police officers who recognize psychosis or delusional behavior. It is unfortunate that a patient has to be incarcerated for symptoms of mental illness instead of being offered treatment. It is ALSO unfortunate that the current laws cause a mentally ill patient to become decreasingly functional before treatment is mandated. Why are murder and suicide the benchmarks for treatment?

    JD in Kentucky

  • Marcie

    It is so frustrating because the system is so broken it is hard to know where to start to try to fix it. I think that educating students in the middle school age range to know that such a thing as a mental illness exists is important. Along with that early intervention and good information on seeking help for those with symptoms is imperative. My son was showing some early onset symptoms in high school but we thought it was part of normal teenage angst. When he went to college he was with several young people who he knew from home, they saw the changes and the odd behavior and they turned their back on him. They basically told him that he was freaking them out and they didn’t want to have anything to do with him. It is heartbreaking because one of the young men he had know since they were 8 years old and he considered him his best friend.
    My point is that he became a danger to himself and we almost lost him and had his friends had any idea of what was wrong perhaps they would have contacted us before he slipped into total psychosis. I also believe that educating young people will also help with them growing up to understanding that people who suffer are not bringing on their problem themselves and they need treatment. Having said that; I think it is also crucial to have treatment facilities and medications and counseling available for those that need it. When the illness manifests – there is little these people can do to get help. There should also be a better system to allow parents or other loved ones to get help and to evaluate that an individual is not competent of making certain decisions about their health care when they are psychotic.
    I have a loved one now who is depressed and has had thoughts of suicide. She is confused and frustrated because she wants help but doesn’t have a private insurance. She is only allowed clinic help and is very upset with it because she isn’t give any time to have the Dr. understand her concerns and her meds are not right. She is about to give up on the system entirely because she can’t traverse it to get the help she needs. It is an embarrassment how our mentally ill are treated in this country.

  • lbjnltx

    dear God we need help! at every level. from schools, insurance coverage, county resources, law enforcement, and society. my daughter, 14 has many psychiatric disorders..mdd, odd, add, psychosis, emerging bpd. we provided outpatient therapy for her and even paid for her therapist to learn dialectical behavior therapy to try to help her. she was taken by officers 4 times to the county jail and assessed by mhmr. they just told us we were doing all that we could do! no! it isn’t all that we could do…she needed inpatient therapy, long term…she was admitted once to an acute care facility where she received the mdd (major depression) diagnosis…the $18,000 bill was not paid by insurance as we did not have “severe mental illness” coverage. we are still to this day paying off this bill. after 2 years of outpatient therapy with no improvement and acting out behaviors becoming worse we made the very hard decision to place her in a residential treatment facility. of course our insurance won’t pay so we are! at the rate of $7,500 per month. she is currently on month 8. she has made great strides and we have high hopes for her future. our insurance policy will not cover therapy of any kind for a person diagnosed with a personality disorder because according to their “experts” improvement is unlikely…who are they to tell me that my child is doomed? how old are the studies that they based their opinions on? none of the books i have read on borderline personality disorder say these poor souls are hopeless. and trust me, i’ve read plenty of books, medical studies, articles, research papers, and my child is living proof that they are WRONG!

    her school wouldn’t even help our family through the daily struggles of getting homework done! wouldn’t make room in an after school program for her…no….the program was full of kids making up absences so that they could pass to the next grade.

    we have spent all of our retirement money, today is my husbands 63rd birthday. my daughter will leave the facility in mid march…ready to graduate the program or not…the money is all gone. the facility has been very kind to us and offered to let us pay out over time if we need to as long as we pay $4,000 per month…which we can’t do.

    what happens to all these children in the same situation whose parents don’t have the ability to get their kids the help we were able to give to our child? i’ll tell you what happens….they get turned out into society and become a burden to all of us. if we don’t start to turn this around our country is going to continue to suffer the consequences but no one will suffer more than the mentally ill person and their families.

  • Anonymous

    I have a son that has SZ, he is 36 years old. When on medication he does well, when not who knows what he will do because of his dilusions and paranoia. I won’t go into all the misery my family has gone through, why, because if you haven’t been there you don’t have a clue. My suggestions are the hippa laws need changed, they serve no purpose when dealing with mental illness. The Governemt needs to realize mental illness is a huge problem and expand medicaid programs for the mentally ill. The 96 hour hold is a joke, it is a revolving door policy. The mentally ill need facilities, where beds are available, and medications can be administered thereby stabilizing any potential violent tragedies that may occur from someone dilusional and paranoid. Bottom line Government needs to step up to the plate otherwise nothing will get better only worse.

  • Julie

    Mr. Earley – My son, Ronny, died by suicide in 2008. I wrote you once a long time ago, expressing my own son’s tragedy, and you sent me a heartfelt & compassionate reply. I thank you again for all your tireless work in advocating for all of us. I truly believe had my son gotten early intervention in the form of a highly trained, and responsive ACT team or something similar after his very first hospitalization for psychosis and continuing for as long as he needed, that it is highly likely he would be alive today. Instead, after 5 yrs. in and out of hospitals, with very little to no follow up care in the community when he was out, he is just one more cold, hard number in a long list of statistics regarding the state of our mental health care in this country. But he was my beloved son. And his last 5 years were lonely and terrifying, despite his having a family who desperately loved him.
    The arguments about involuntary community assisted outpatient treatment is certainly a necessary one, and of course I advocate for this as a vital tool. But studies have shown that intense intervention very early on is highly successful in keeping people out of hospitals, prisons, and in reducing suicide, even before involuntary orders are needed. Not only is this humane, and should be done regardless of the cost, but it saves money across multiple systems. When I think of the money spent, and wasted because of ineffective care, just in my son’s case, I know we can do much, much better without spending more, but just spending better.

    • lbjnltx

      dear julie,

      my heart goes out to you and your family on the loss of your precious son. the pain must be unbearable.

      i agree that early intervention is the key to success…what ever it takes (inpatient if necessary).

      in our situation, the borderline diagnoses at age 12 was almost unheard of. to this day, even when the criteria for bpd is met persistently and pervasively, many go undiagnosed until they are 18 years old. this practice is irresponsible and wastes precious time…there are ways to make a diagnoses without the stigma (created by the professionals themselves) in adolescents…by using the terms “emerging” or “traits”…give parents a starting place to begin to understand their children so that they can begin the road to recovery…waiting until they are 18 …. puts up so many roadblocks towards recovery…ie, neural pathways are entrenched, addiction rate from self medicating increases, sexually transmitted diseases, pregnancy (a new generation raised by the mentally ill!), and….parents no longer have any authority over them…it is a disaster in the making.

  • DianeB

    Thanks for this, Pete. I have a 22-year-old son with paranoid schizophrenia.

    It seems to me that there a model for state-of-the-art treatment and prevention that exists. It’s just that we as a society are not willing to fully fund it. It requires fully-funded services covering a very wide spectrum of need.

    Housing with the appropriate level of support based on the needs of the individual;

    Opportunities for meaningful work and training for that work;

    Opportunities for recreation, socialization, and appropriate integration into the community;

    Clear information for family members and loved ones on how to access the mental health system ;

    Assistance and education for families taking a loved one through the involuntary commitment process –

    There must be appropriate community-based services available to immediately meet the needs of individuals needing them.
    Appropriate number of acute care beds and long-term beds.
    Mandatory Outpatient Treatment that is actually effective in practice rather than in “name” only
    Get rid of “imminent danger to self and others” as the only criteria for involuntary commitment;
    CIT training for all law enforcement officers likely to encounter individuals presenting with psychosis;
    Anti-stigma and public health awareness programs that are effective;
    Fully-staffed mental health departments with appropriate number of case managers, therapists, and doctors;

    The realization that we are spending way too much money to allow the criminal justice/prison system to care for individuals with mental illness. In the long term, this has to be a horrible waste of money and productive lives;

    Treating psychosis more like dementia – in that we will treat the person with dementia whether they “want” it or not;

    Respite and resources for caregivers of children with early onset severe mental illness ~ rather than blame for the illness and an attempt to “fix” the family;

    An appropriate look at the balance between the rights of the individual who is in the midst of a psychotic episode and the right of that same individual to a sound mind ~ and the right of the state to intervene when necessary.

    I could go on and on, but this is just a stream of consciousness laundry list. I realize that a lot of this is dealt with at the state and local level, but it is so unfair that American citizens in one state receive more state-of-the-art care than another.

    Thanks, it’s about time Loved Ones of people with mental illnesses had a voice. We’ve been in the trenches for years dealing with the system you so aptly call in your book, “Crazy.”

  • Jmj2400

    Asperger Syndrome Incarcerations In Iowa
    Editorial By President of NAMI BA and Criminal Justice Action Committee:

    Many of you have autistic children and that is why you have joined your respective autism organizations. Some of you have family members with Asperger Syndrome or high functioning autism. I know what it is like to live with somebody with Asperger Syndrome who struggles to look their own parents in the eye and not being able to reciprocate with the love that you have for them. I grieved when at a young age it became apparent that Daniel could not make friends. I grieved when I coached his baseball teams and he would sit on the bench by himself. My son graduated from the University of Iowa with an A- average. I grieved when I took him on numerous interviews and he could not be hired due to his autism. I grieved when he fell in love with a girl and she finally rejected him and he could not accept it. To him nobody else would ever love him. I grieved when we had to hospitalize Daniel a couple of times in his youth. I grieved when his roommates at College could not stand living with him and tried to beat him I grieved when he got caught up in the legal system and not many cared about him. I have spent years advocating for him. Daniel is not violent but yet he will waste at least 5 years being incarcerated. What a tragic waste of a life. Without the autism , he could be a CPA, an Attorney, and Investment Banker. With a criminal record, what job will be ever hold now?

    I am here to warn you that some of you will have your children become part of the legal system. My son Daniel is one of the first to have been incarcerated with Asperger Syndrome.

    I have condemned the recent sentencing of two men with Asperger Syndrome to 27 months and another to over 8 years. The first one is Daniel. I called for Federal Judge Reade to resign as well as Stephanie Rose, United States attorney in northern Iowa to resign. Had they both taken the time to read information about Asperger Syndrome and organic brain disorders, both might actually have had compassion instead of advocating for continued inhumane incarceration in the Iowa gulag. I am ashamed for the Iowa prosecutors and judges for continuing to incarcerate instead of offering treatment. Volumes of information was given to both of them and they chose to ignore them. I have stated that a sweeping reform is needed in Iowa and the rest of the Unites States. I stated that this should be a wakeup call for everybody. Your children may be next. Daniel has not been allowed outside since he was arrested in March of 2007. We treat our terrorists better.

    Please read the articles that I will be providing to educate yourselves. Law enforcement in the State and Federal jurisdictions will treat your children as thugs and incarcerate them with true criminals. I have been advocating in the state of Iowa for 4 years. My pleas have mostly fallen on deaf ears. I have provided much information that explains Daniels child like behavior to prosecutors and they have ignored me. In fact instead of shipping him close to us in a Federal prison, they have shipped him off to Oklahoma City. We live in Illinois.

    The following is from a recent report from Forensic Psychiatrist Doctor Mills dated 06/01/2010. . He has testified in numerous court cases and these include for the government. Doctor Mills stated “Incarceration likewise is counterproductive because time in custody fails to help Mr. Jason acquire the social (and related) skills that he needs in order to become economically self-sufficient, and fails to give him the opportunity to make new, more appropriate social relationships. While time in custody serves the goal of “neutralization,” it does little to provide Mr. Jason, affirmatively, with the skills he will need if he is meaningfully invest in new relationships (and thereby stop his obsessive ruminations about past ones) and become a productive member of society.
    Dr. Mills continues “To conclude, you asked me to be completely candid in my assessment of Mr. Jason. I have done so both to honor your request and because I do too many criminal cases, for both sides, to have anything other than respect for the complexities and competing perspectives in such matters generally and in this compelling case, particularly. Still, I would iterate that Mr. Jason’s disorder is real, serious and not of his choosing. Further, his misconduct clearly emanated from that disorder. Given that fact, I would hope that a fair-minded prosecutor balancing these many considerations would be moved by Mr. Jason’s clinical situation and would work with you to find a better alternative than further prosecution and (probably) counterproductive incarceration.
    If you wish additional information, please let me know.”

    Doctor Olson said it best when he said:
    “Mr. Jason is an unfortunate young man who has a brain disorder. He has suffered from the impact of this disorder since at least his early childhood. He does not have an antisocial personality or criminal mind.”

    As long as I breathe, I will not bow to the criminalization of Asperger Syndrome and mental illness. I will not break. I will continue to advocate.

    “If societies are judged by how they treat their most disabled members. Our society will be judged harshly indeed,” said E. Fuller Torrey M.D., a research psychiatrist and Treatment Advocacy Founder.
    The present situation, whereby individuals with serious mental illnesses are being put into jails and prisons rather than into hospitals, is a disgrace to American medicine and to common decency and fairness.”
    I have been told from reliable sources that my son would not be incarcerated in the State of New York.

    Joseph M. Jason

    /s/Joseph M. Jason

    Criminal Justice Action Committee

    NAMI BA President

    (847)537-3009