Thank you, Larry Drain, for making us think and feel about the serious matter of mental illness in the light of reality . . . Reality check, anyone?
hopeworkscommunity, Larry Drain
What is Murphy selling?
Donald Trump gave me the clue.
Even more than AOT or any other policy idea Tim Murphy is selling something far more visceral, far more compelling and far more appealing. Like Trump he is selling anger to those who feel like they or their loved ones have been hurt by a system that often doesn’t help very much. Like Trump he is selling justification and direction by telling them who is to blame. Like Trump he is selling redemption and hope by telling them if they just follow and support him he can change it. His message is one of quest and crusade and rescue of those hurt and victimized.
Like Trump he has never let the facts get in the way but that is not the subject of this post.
Murphy has tapped into something very real. It is far more than a few overcontrolling parents frustrated with their kids. I sat one night with one 72 year old man talking about his 38 year old schizophrenic son. The pain and outrage was real. His son had been attacked by police in a parking lot who thought he was drunk a couple of weeks before he sat down with me. He had been tased more than once and they thought some damage to his legs might be permanent. He was furious at the police but equally furious at a system that had never been there for his son and furious….well just furious that the son he loved was seemingly stuck in the life he had. I remember listening to a mother describe the day she screamed and begged the police not to shoot her son. He had a towel wrapped around his hand and they thought he might have a gun. I have heard a hundred more stories.
It is not so very different than the rage I hear when I hear people talk about the damage they feel the system has done to them. It is the rage of the 22 year old girl with no history of diabetes in her family who now, courtesy of the medication a psychiatrist had prescribed her, had just found out she now had diabetes. She screamed at me….”What the fuck am I supposed to do now?”
It is my rage. My nephew one night laid down in front of a train and died. He believed that treatment was for crazy people and he could think of few things worse than being crazy. He believed what the wider society told him about “mental illness.” He didn’t want to be embarrassed. He didn’t want to stick out. He tried to hide his desperation. He tried to macho his desperation. Finally he decided to kill it.
The rage is real. It may express itself different for different people but it is real.
I think people can find better lives. My nephew, my friend’s son and literally hundreds of thousands of other people deserve something better. And it literally makes me want to scream and scream and scream that so many never find it. It makes me want to scream when people are treated as less than people. It makes me want to scream when the only options people have are things that have already not worked. And it makes me scream when people in their zeal to control symptoms destroy the quality of the life they are trying to save.
Murphy is not going away. The rage is real.
I think back often to something I heard Robert Whitaker say once. He wondered if we would ever have an honest mental health system. What if it was just about what worked?
What if it was?
Maybe in the end that is the only real answer to the Murphys…
I'm writing my story in hopes that it will inspire others to share their story. I don't know if there is a "book" in everyone but I know for certain there is a story in there. I encourage you to share your story of overcoming some of life's challenges. Someone needs to hear what you have to say. They are waiting!
I was raised appreciating my family. However, in 1993, I met a personal health challenge that put me in great need of help and support. My family rose to the occasion with love and support I desperately needed. So, I learned anew the meaning of family in my midlife. Since that time I've worked to be there for my biological family and to be "family" to others with a similar need as mine.
Tragic California Case Exposes Failings in Our Mental Health Care System
CareforYouMind Feb 10,'15
In April 2012, Fred Paroutaud, a California man with no history of mental illness, experienced a psychotic episode. Mr. Paroutaud was hospitalized and diagnosed with bipolar disorder. Just 72 hours after he was admitted, and despite the fact that he was still experiencing hallucinations, he was discharged and referred to outpatient group therapy. Because his condition remained unstable he requested alternate therapy and one-on-one sessions with a psychiatrist. He was denied both by his health plan and his condition deteriorated.
Concerned by his worsening depression, his wife appealed to the health plan again and again. She pleaded that her husband required more supervised and personalized treatment. While waiting for an appointment with his psychiatrist, and just two months after his first psychosis, he died by suicide.
Mr. Paroutaud’s widow is convinced that if more intensive and timely care had been available, her husband would still be alive. In October 2013, she and two other plaintiffs filed a class-action lawsuit against the health plan claiming they were harmed by its systemic denial of timely access to mental health services.
Why this story sounds familiar
Those two narrow levels of care are appropriate for many people, but not all, and certainly not for all stages of mental illness. The absence of those critical, in-between levels of care is one of the ways that our mental health system falls short and where it fails people like Fred Paroutaud and his family.
When someone is in the midst of a manic episode or considering suicide, hospitalization can provide the opportunity to stabilize the condition. Upon discharge, many patients require medically monitored care in a residential facility or highly personalized care in a medically-monitored outpatient setting. Unfortunately, that level and type of care is almost impossible to find in commercial health plans.
There is another way
This structure, with six levels of care, is the backbone of the mental health system under California’s Medicaid system, and it provides a complete, stepped approach to rehabilitation.
This type of care should not be exclusive to the Medicaid population. One of the 10 essential health benefits under the Affordable Care Act is rehabilitation; another is mental health care. This means that rehabilitation for mental health care isan essential benefit, and all Americans in commercial health plans are entitled to more rehabilitation-focused mental health services.
What you can do now
With increased national attention on access to mental health care, now is the time to tell us about the problems you are having in accessing the care you need. We want to know what services you were denied and the barriers you faced, such as unaffordable out-of-pocket costs, transportation issues, or lack of trained providers in your plan’s network, etc. We also need to know what you did or didn’t do in response and how this impacted your or your family member’s recovery. As advocates and advocacy organizations, we are positioned and prepared to knock on the door of government regulators and health plans and point out the disparity in care and demand access to appropriate rehabilitative services.
Many commercial insurers don’t cover rehabilitation services because they don’t believe they have to. And if no one demands otherwise, they are unlikely to ever change. Share your story. Don’t take ‘no’ as the only answer. Let’s realize the parity we deserve.
Rusty has been Executive Director and Legislative Advocate for CCCMHA since 1987. He is co-author of California’s Mental Health Services Act, a tax on personal incomes over $1 million to expand community mental health care. At CCMHA, he has been instrumental in moving forward a variety of critical mental health-related initiatives, including ensuring the implementation of the federal Early Periodic Screening, Diagnosis, and Treatment (EPSDT) program to serve children with severe emotional disturbances. He also serves as Executive Director of the Mental Health Association in California.
I'm grateful for all of the support that got me through my time of recovery. Today I appreciate the support I have in gaining more wellness each day.
7 Tips To Have A Long-Lasting, Happy Relationship
In today's society, we don't have many role models or common ideal values when it comes to the question of how to have a long-lasting, happy relationship. Most of the things we learn are from trial and error. We're all just trying to figure it out — the ever-present question of how to coexist with our partner in the most harmonious, loving way.
But here are a few lessons that I've learned the hard way. When we are more flexible with ourselves and our partners, we communicate better, and get along better. These seven practices are essential for helping your relationship last — and to be happy, healthy and strong along the way.
1. Realize that it's impossible to "win" a fight. No one will ever win, ever.
When you are involved in an argument with your partner, it often becomes less about coming to a solution and more about "winning" the argument or being "right". The goal in conscious communication is to create more harmony in your relationship and find a solution that you both can agree upon. Rehashing the same ideas over and over again in an effort to feel "right" will not lead to happiness for anyone.
2. Connect to your partner as part of you.
Often, we view our loved ones as separate from us. But in our relationships, all of our interactions are two-sided, and it's important to keep this in mind for a healthy, happy relationship. We are all one, all connected.
When you begin to change your perception from separation to oneness, it is easier to drop the armor and let in your partner. Your communication will be better, and you'll feel more connected. Practice viewing your partner as another part of you that is trying to tell you something important. Always listen with an open heart — and in the case of a fight, listen without having to retaliate.
3. Always be open to the possibility that you might be wrong.
If your loved one has an issue with you, chances are it's at least worth looking into. There are probably very few people that know you better, so listen up instead of making excuses, pointing the finger, or detouring the conversation.
Explore the possibility that you may have something to work on. Reply lovingly with, "So what you're trying to say is ...?" "What are your suggestions on how I can improve?" "I love you and am willing to look into this." It's OK to be wrong. If you are — accept it and simply try making the change. We all want to grow and flourish, right? Those closest to you can play a crucial role in your spiritual growth and evolution.
Furthermore, if you show you are willing to accept your faults, your partner is more likely to follow suit and accept his downfalls too. Whether or not your partner is incredibly wise or evolved, if you genuinely want to have a better relationship, then it's worth it to listen with genuine curiosity and openheartedness.
4. Say goodbye to the silent treatment.
Plain and simple, the silent treatment is useless. If something is bothering you — talk about it. Holding a grudge can have an extremely negative impact on the energy and vibration in your home.
Create a space that is inviting and loving, by being open, honest, and kind. Your home should feel like a sanctuary — a refuge of peace from this often crazy world.
Even if you have a bone to pick, it's important to express that you are appreciative of the things that your partner may do that are awesome. Praise is so effective in drawing the best out of a person. If there is a behavior that you love and enjoy, give him props for it.
Of course, there will always be things that annoy you or make you angry. Ask, "Why does this particular behavior bother me SO much? "Who in my past has expressed something similar and how is this connected?" And so on.
So know you're triggers, so you are less likely to be reactive when something comes up. If you are always just criticizing and bashing your partner, he/she will feel unmotivated to make changes.
6. If you want something, give it.
Another way to say this is "be the change you want to see in your partner". If there is something you would like to see more of from your partner — try giving it to them first. You can't treat your spouse like dirt and expect flowers.
7. Don't expect everyone to express love in the same way.
Everyone has different ways of expressing themselves — especially in intimate contexts. Sometimes all you need is a hug, yet all he needs is to talk. Find a common ground. Ask, "What are the things I do that make you feel loved and supported?" Talk about your needs and ask what his are.
Photo Credit: Shutterstock
Ordinary heroes: Drains honored for speaking out for health care equality
y Linda Braden
Larry and Linda Drain are quiet, unassuming people. But when circumstances arose that threatened Linda’s life, they both began speaking out, their voices ringing loudly to bring awareness to — and a solution for — themselves and others who have fallen through the cracks of the health care system in Tennessee. Their income is too high to qualify for TennCare, Tennessee’s public insurance program, and too low to qualify for federal subsidies under the Affordable Care Act, also called Obamacare.
In acknowledgement of their efforts, the Tennessee Health Care Campaign presented the Drains with the 2014 Heroes for Health Award in August at the John Seigenthaler First Amendment Center, Nashville. The award was given “for your dedicated support to affordable access to high-quality health care for all Tennesseans.”
The event honoring the Heroes was part of the Tennessee Health Care Campaign’s 25th Anniversary celebration. In addition to the Drains, Laura Sell was honored for the major work she did as a volunteer to promote and support enrollment in the Patient Protection and Affordable Care Act, collaborating with the Blount County Public Library.
Larry said, “It was a very eventful night. We got to speak to a lot of people, meet a lot of people that were heavy-hitters that we knew about or read about. That was neat. And to get people to treat us like we were important. As we were walking out the door, I said, ‘Linda, do you ever get over being surprised when people treat us nice?’ I’m surprised every single, solitary time. It’s just been a strange happening. When it first started out, we didn’t have a clue ... The way we look at it is that we are extraordinarily ordinary people, and the idea that people would know who we are or that people would listen to what we have to say — I wouldn’t have predicted that in a thousand, million years. Then when it took off, it went insane.”
The story began with Linda, who has been drawing Supplemental Security Income (SSI) for some time because of epilepsy, brain surgery and additional health conditions. Larry said, “She has TennCare. She has to have the TennCare in order to live. If she does not have the medication, if she doesn’t have the medical care, she will die.
“Ten years ago, a good day for her was having 10 to 15 grand mal seizures. She went through brain surgery, and the last 10 to 14 years have been extraordinarily eventful, but the medication is her pathway to life.”
After Larry turned 62 last September, he decided to take early retirement and begin drawing Social Security.
“If I had to take all the dumb, stupid, worst things in my entire life that I have ever done, that one is so far to the top that there is not a second place,” he said. “The way we had it figured out, we could live if we took what she made in SSI and what I made in retirement. We weren’t going to be rich — in fact, we were going to be poor — but we would be able to pay our bills, do what we needed to do. We were going to be OK.
“After a couple of months, Social Security called us in and said, ‘You guys make way too much money.’ They were very nice, not cruel or mean or anything like that. ... But they said, ‘We have a limit on unearned income, and you guys are way over it.’”
Larry questioned how that could be, and was told that his Social Security retirement is considered unearned income. He said, “I asked them, how could that be unearned income? I worked 47 years for that. It’s my money. They said, legally it’s unearned income. They told Linda that her check for $720 was going to become $20. We were going to lose $700. I said, ‘I’ll just give the retirement back. I’ll just get another job and we’ll be OK.’ And they said, ‘Well, you can do that, but the only way you can do that is to give us back every single penny we have given you today.’ Well, if I could give it all back today, I would never have needed it to begin with.”
Larry thought he could continue drawing his retirement and also have a job to make ends meet. He said, “What they said after that has basically driven the whole situation. They said, ‘You have to understand, that because your wife is on TennCare, if you make over $85 in a month, she will lose her TennCare.’ So we went home, and we did all the figuring we could.”
Their projected budget for January would leave them with $30 for essentials such as food and gasoline, and the following months would be worse. “We looked at everything we could, trying to find a way. ... But there wasn’t a way,” Larry said. “We were in a position where, if I got a job to give us enough money to live on, it would kill my wife. It would take her insurance away, and it would kill her. If I didn’t get a job, we couldn’t live. We couldn’t live on a dollar a day. It just wasn’t doable. So on Dec. 26, after 33 years of marriage, we separated.”
The original plan was for Linda to stay with a relative until they could find her a permanent place so she could retain her SSI and TennCare. Larry would then find a place as close by as he could. Larry said, “At that time, our understanding was that, according to the way the laws were in the state of Tennessee, we would never again live together as man and wife.”
There were two possible solutions: Change Social Security laws or expand TennCare, the state’s managed Medicaid program which provides health care coverage primarily for low-income children, parents, pregnant women and elderly or disabled adults. Social Security laws were not going to be changed, but Tennessee Gov. Bill Haslam could spearhead expansion of Medicaid. Larry said, “If he expanded Medicaid, then Linda didn’t have to be a member of a category, she didn’t have to be ‘disabled,’ to get it. All she had to do was be poor. If he expanded Medicaid, then she would have her insurance, which meant we could live together, I could get a job, and although we’d struggle, we would live. Without him expanding Medicaid, we had no help at all.”
Letters to governor
Larry began drawing attention to the need for TennCare expansion by writing a series of letters to the governor. Some were very personal, some general and policy oriented, but in each letter, Larry pleaded with Haslam to submit a plan for TennCare expansion. The 100th letter was emailed on Sept. 2. As of that date, the governor had not responded to the Drains, but he did announce on Aug. 28 that he plans to submit a proposal to Washington to expand Tennessee’s Medicaid program. He did not release any details, however.
Larry said more than 1,200 individuals from across Tennessee have told him they also contacted Haslam. Larry’s 100th letter to the governor begins to list the names, and he plans to continue adding names in subsequent letters until every one is included.
Each letter is available atdeargovernorhaslam.wordpress.com and is viewed by 4,000 to 6,000 persons daily. In addition, a petition entitled “Gov. Haslam: Expand TennCare and Let Me Stay With My Wife!” at www.thepetitionsite.com has almost 46,000 signatures in support of the Drains.
The Drains’ story was told in the Nashville Tennessean and other major news outlets, drawing even more attention to those who, as Larry said, “didn’t fall through the cracks — we live in the cracks.”
Twenty-five miles separate this couple now. Linda is in Knox County, while Larry is in Blount County. They are waiting for the time when they can once again live together as man and wife without Linda losing her life.
Larry said, “I should not have to drive 25 miles to see my wife. It’s wrong in every sense of the word.”
Support for mood disorders: Allen Doederlien shares information Thursday
By Linda Braden Albert | email@example.com | July 20, 2014
A series of presentations focusing on mental health issues that began in March at the Blount County Public Library will continue Thursday as Allen Doederlein, president of the Depression and Bipolar Support Alliance (DBSA), speaks on bipolar disorder and depression. The presentations, sponsored by NAMI (National Alliance on Mental Illness) Maryville, are free and open to the public.
Doederlein said, “Our headquarters are in Chicago, Ill., and yet, we are really all over the country and have some incredible and important affiliates in Tennessee. The work they do is entirely volunteer. It’s done as a labor of love and it’s done from a very personal place.”
The organization is by and for people who live with depression or bipolar disorder. “That lived experience informs everything we do,” Doederlein said. “We provide information that’s easy and understandable, not written in ‘medicalese,’ not confusing but gets directly to what these conditions are and what you can do to live and get well. We provide empowerment. These are conditions that can make people feel disenfranchised, that can carry great stigma. We want to make sure that people are strong advocates for themselves.”
Doederlein said another goal is to raise concerns and needs to elected officials but also on a more personal level. “Also in their work places and their families — anyplace people with mood disorders may find themselves, to say, let’s work collaboratively and constructively to make sure everyone does well,” he said.
DBSA support groups provide valuable assistance and education for those with mood disorders. Doederlein said, “Our chapters operate free, in-person peer support groups. That’s a group that meets without a doctor or clinical professional present, just the people with a lived experience. There’s a great deal of scientific literature that shows that peer-to-peer experience is greatly beneficial and helps people get well and stay well.”
About 53,000 people are reached nationally in a year by these peer support groups, he added.
Doederlein said Larry Drain, president of the NAMI (National Alliance on Mental Illness) Maryville and initiator of the mental health informational series, is a wonderful example of someone with a great deal of power and intellect who has been challenged by mood disorders.
“He had taken that lived experience and made something in terms of giving back to others,” Doederlein said. “When you think that there are people doing that all over the country, it’s really, really something. Larry’s not only done that in terms of support but also as an advocate.”
At the national level, 50 percent of the paid professional staff and volunteers must, by charter, have personal experience in dealing with mood disorders.
“That perspective informs everything that we do,” Doederlein said. “That’s really important. Very often in health-related education or advocacy, it will be doctors talking to doctors, not really related to a person getting herself or himself well. We make sure that’s at the center of what we do.”
Mood disorders include a spectrum of conditions, including depression and bipolar disorder. Doederlein said, “About 21 million American adults are estimated to be affected by depression and bipolar disorder. That breaks down to about 14 million affected by depression, and between 6 and 7 million affected by bipolar disorder.”
Mood disorders are challenging, but they can be managed and those with the disorders can thrive and contribute to society, Doederlein said. A prime example — Abraham Lincoln.
To learn more, visit the DBSA at www.DBSAlliance.org or attend Thursday’s presentation. It begins at 6:30 p.m. at the Blount County Public Library.
If the mental health system was sane…
There would be a range of services availible reflecting the human needs of those it serves.
Those services would be availible to those that need them.
Those services would be based on what works, not what makes money, reflects any particular philosphy or interest, and not because it is what we are used to doing.
Asking for help would not label someone, brand them, be a cause of shame, a source of discrimination. Asking for help should not be a problem.
It would realize that lack of a place to live, lack of food, lack of adequate clothing, lack of a job are frequently barriers and problems for the people they serve and address them in a direct and effective manner.
It would know that inadequate health and inadequate health care are common problems for the people they serve and be part of an effort to serve the entire person in an integrated fashion.
The goal would be to empower, educate, and support people towards gaining control over their lives so as to maximize their chances of leading happy, meaningful and successful lives.
This would not be empty words, but a passionate conviction that fuels and structures everything done in the system.
It would not mistake the people it serves for the labels it places upon them.
It would know that the most important thing about help is that it is what you do with people and not what you do to them. It would see itself as partnering with the people it serves.
It would know that people can say no and that not be a symptom of illness or distress.
It would view peoples values, hopes, thoughts, and aspirations as a source of strength and not a symptom of illness.
It would take substance abuse ultimately seriously. Drinking and drugging are the two primary ways people with mental health issues try to treat themselves.
It would make sure that one of the core experiences that someone seeking help has is contact and interactions with others who have dealt with similiar issues. It would treat seriously the idea that you can learn from the experience of others and them from you.
It would not tell people who have hard times or more problems they have failed or are failures.
It would take the issue of trauma seriously. Knowing how people have been hurt and not being part of hurting them further should be cornerstones of the system.
It would treat the issue of what happens in jails and prisons to people with mental health issues as a moral outrage and the impulse to do something about it as a moral necessity.
It would be honest about the risks and benefits of psychotropic medication. Help people to make real and informed choices.
It would treat families as important and not as irrelevant or a threat to what it is doing.
It would treat justice as a driving force and value in everything it does.
It would be honest with the people it serves about what it doesnt know if it wants them to have trust in what it does know.
It would attack the issue of suicide with passion. No one should ever feel like death is the best solution to life.
It would tell people that no problems make you less human,
It would view hope as realistic and know that when they dont they do more harm than good.
May 2014: Kathy Flaherty
Kathy Flaherty works as a senior staff attorney at Statewide Legal Services of CT, Inc. She has dedicated her professional life to advocating for the rights of the underserved. A graduate of Kingswood-Oxford School, Wellesley College and Harvard Law School, Kathy has 17 years of experience in poverty law, specifically focusing on housing, benefits, and consumer law.
Kathy lives with bipolar disorder. She makes full use of her work place’s very generous sick leave benefits and a flexible schedule. Kathy was diagnosed her first year of law school after being civilly committed. She was not permitted to return to Harvard until the next fall, at which point the school put conditions on her return.
During her third year of law school, she used the Harvard Law School newspaper as the forum to come out about her illness. Against the advice of the Office of Public Interest Advising, when applying for jobs after law school, she included her position on the council of former patients of McLean Hospital, making her disability fairly obvious. “If someone didn’t want to hire me because of my disability, I didn’t want that job.” Kathy says that she has gotten jobs because she has disclosed.
Kathy shares that her biggest barrier to the legal profession was getting admitted to the Connecticut Bar. Despite the fact that she had already been admitted to the Massachusetts and New York Bars, she had to wait for a year and a half and then was conditionally admitted. For the next nine years, she had to report that she was taking her medication, as well as provide a doctor’s note twice a year confirming that she was in fact taking her medication.
Since 1999, Kathy has served as a volunteer trainer, presenter, and facilitator for Connecticut’s chapter of the National Alliance on Mental Illness (NAMI-CT). Combining her personal experience as a recipient of mental health services and her legal background, she is able to speak to issues affecting those living with mental illness from a multi-faceted perspective. Her advocacy work has earned her numerous honors including the Dr. Karen Kangas Advocacy Award from Advocacy Unlimited in 2010. “Winning an award named for someone who is a role model for advocacy and a very dear friend is humbling.”
Kathy currently serves as a member of the Board of Directors of Advocacy Unlimited, Lawyers Concerned for Lawyers-CT, and the Connecticut Alliance to Benefit Law Enforcement (CABLE). She also serves on Governor Malloy’s Sandy Hook Advisory Commission. Her goal for the future? “To continue to do work I enjoy.”
Target Zero to Thrive This April
DBSA targets raising expectations for mental health treatment.
A month-long social media campaign, Target Zero to Thrive, challenges mental health care professionals, researchers, and individuals living with or affected by mood disorders to raise treatment goals to complete remission—to zero symptoms.
Of course the first priority for treatment is ensuring a person living with depression or bipolar disorder is out of crisis. However, too often the end goal established for successful long‐term care is for the person to maintain a stable mood. Better, or even stable, is not always well. Every person deserves the opportunity to not just survive but thrive, and to do that we need to ensure true wellness is the end‐goal for mental health treatment.
Consider this, successful treatment for cancer proceeds with the goal of removing every cancerous cell—to achieve complete remission. Why then, do we consider treatment for depression or bipolar disorder to be successful when symptoms persist, even if the person is considered to be stable?
The cost of settling for reduced symptoms is simply too great. It is, in fact, a matter of life and death—for when symptoms persist, individuals who have mood disorders are:
DBSA President Allen Doederlein shares, “Living with a mood disorder can damage hope and lower expectations; so a person may not expect or think they deserve a full life. We, as peers, clinicians, researchers, and family, need to help them expect and achieve more—by raising the bar for treatment. Targeting zero symptoms may seem like a formidable goal, but there are over 21 million reasons and Americans living with depression or bipolar disorder to make it a goal worth pursuing!”
(1) Am J Psychiatry. 2000 Sep;157(9):1501-4.
(2) J Clin Psychiatry. 2007 Aug;68(8):1237-45.
(3) Bipolar Disord. 2004 Oct;6(5):368-73.
(4) Psychiatr Serv. 2013 Dec 1;64(12):1195-202. doi: 10.1176/appi.ps.201200587.
Larry Drain, Legislative Liaison for DBSA Tennessee, offers this blog with its many references that provides points for and against the Murphy bill. Please take time to self educate. Larry gives us a good start.
[Children's Mental Health Network
The Morning Zen]
Congressman Tim Murphy introduces controversial Helping Families in Mental Health Crisis Act of 2013
2 Comments | Posted December 15, 2013
On Friday, one day before the anniversary of the Newtown school shooting tragedy and on the same day of yet another tragic shooting at a school in Colorado, Congressman Tim Murphy introduced the Helping Families in Mental Health Crisis Act of 2013, a bill that would effectively rewrite how the Substance Abuse and Mental Health Services Administration (SAMHSA) operates and significantly narrow the focus of the types of mental health services and supports it helps promote through its grant programs. While the bill is at this point just a proposal, it is an important read for Network faithful as it sheds a light on the thinking of many individuals across the country about how to improve mental health services in America. Unfortunately, with the continued tragedies occurring at schools across the nation the tendency to equate guns and violence with mental illness leads to recommended solutions in this bill that are narrow in focus and could potentially set back the advances in the field of mental health 20 to 30 years.
What makes writing this Morning Zen piece difficult for me is that I have the utmost respect for Congressman Murphy. A child psychologist by training, co-author of two books ("The Angry Child: Regaining Control When Your Child Is Out of Control" and "Overcoming Passive-Aggression), it is obvious that Congressman Murphy cares deeply about improving mental health services. For that he is to be applauded. But what is in this proposed bill for the most part is either mystifying or antithetical to what the research tells us works best for young people with emotional challenges and their families. In fairness, at the end of this post I have included links to position statements on the proposed bill from national organizations and thought leaders both for and against the bill. As always, we pride ourselves on providing as many perspectives as possible so that our educated readers can make up their own minds and respond to their elected officials accordingly.
The response from mental health advocates and provider groups both for and against the bill was swift. As is the general approach of the Children's Mental Health Network we took the weekend to read and digest the 135-page bill before making our comments. The list is long so grab a cup of coffee for this one.
The proposed bill is complex in that mixed in with proposals that are administratively bureaucratic, relying on reference resources that in some cases are twenty years old and frankly dismissive of anything outside of the realm of narrowly defined evidence based practice, are some excellent proposals such as continuing funding for the Garrett Lee Smith and National Child Traumatic Stress initiatives.
However, overwhelmingly the recommended changes in the bill set the advances made in knowledge about what works for youth with mental health challenges and their families back a good twenty to thirty years.
Clouding the picture of how to interpret this proposed bill was the timing of its release – on the eve of the anniversary of the Newtown tragedy and on the day of yet another shooting at a school in Colorado, where emotions were already running high and the popular press was flooded with news stories about guns, violence and mental illness. Even though research shows that those with a mental illness are significantly more likely to be a victim of violence than a perpetrator of violence, discussions in Congress about what to do tend to fall too easily into the guns + violence = mental illness equation.
Okay, with all of this in mind as a backdrop for what is in the proposed bill, let’s take a walk through some of the highlights. The 135 page document is one I encourage you to read to get your own sense of its merits and drawbacks. In this post I will focus on some of the key areas that are important to highlight. Page numbers of the bill are cited so that you can read the full text in the copy of the proposed bill that you can download here.
Additional layers of bureaucracy added while diminishing the decision-making role of key SAMHSA personnel (Page 4)
National Mental Health Policy Laboratory (page 7)
The description of the NMHPL goes on to say that "In selecting evidence-based practices and services delivery models for evaluation and dissemination under paragraph (2)(C), the Director of the NMHPL
On page 10 the language continues with "In carrying out the duties under this section, the Director of the NMHPL shall consult with representatives of the National Institute of Mental Health on organization, hiring decisions, and operations, initially and on an ongoing basis; (B) other appropriate Federal agencies; and (C) clinical and analytical experts with expertise in medicine, psychiatric and clinical psychological care, and health care management.
The Children’s Mental Health Network is troubled that there is no mention of youth and family involvement in such a consulting pool, especially with the impressive track record achieved by SAMHSA in cultivating a family-driven, youth guided approach through its system of care grants and cooperative agreements over the past 20+ years.
Interagency Serious Mental Illness Coordinating Committee (page 14)
The responsibilities of this Committee include:
There is a long list of required members for this committee (page 15), including the Director of NIH, the Attorney General of the United States; the Director of the Centers for Disease Control and Prevention and more. Members of the Committee serve 4-year terms and would be required to meet a minimum of two times per year. In addition, the Committee “may establish subcommittees and convene workshops and conferences "to enable the subcommittees to carry out their duties."
And finally, with regard to administrative duties, on page 70 it is noted that the administration of block grants would be removed from the Director of the Center for Mental Health Services and shifted to the Assistant Secretary for Mental Health and Substance Use Disorders. Gonna be one busy Assistant Secretary if this proposal goes through!
I can't help but think that if this plan were to come to fruition there would be bureaucratic gridlock. Two new significant leadership positions assuming key duties of currently existing high ranking officials within SAMHSA and a large Committee with sub-committees to "assist the Assistant Secretary in carrying out the Assistant Secretary's duties" (Page 14). In my mind, this is a huge duplication of duties already ascribed to the SAMHSA Administrator, the Director of the Center for Mental Health Services and others within SAMHSA.
Let's move away from administrative duties to some of the new grant programs proposed, specifically the Assisted Outpatient Treatment Program. The proposed bill calls for up to 50 grants each year for a 4-year pilot program to focus on assisted outpatient treatment programs (Page 19). Each grant would be eligible for one million dollars per year for four years - $15,000,000 per year would be authorized totaling $60,000,000 over the four-year period.
Assisted outpatient treatment is a controversial topic, with some saying it is the best option for an adult with a mental illness who "lacks capacity to fully understand or lacks judgment to make informed decisions regarding his or her need for treatment, care, or supervision." Others, including the Children's Mental Health Network, see this as a potentially dangerous road to travel in that it could have wide-ranging impact on those who might be swept up unnecessarily. You can review both sides of the argument regarding Assisted Outpatient Treatment at the end of this post.
Number of seriously mentally ill who are imprisoned (page 63)
Reducing the stigma of serious mental illness (page 79)
Title XI-SAMHSA Reauthorization and Reforms (page 99)
In addition, it would be required that "Before awarding a grant, cooperative agreement, or contract, the Secretary shall provide a list of the members of the peer review group responsible for reviewing the award to the Committee on Energy and Commerce of the House of Representatives and the Committee on Health, Education, Labor, and Pensions of the Senate." This is yet another opportunity for delay and bureaucratic red tape.
Transfer of all functions and responsibilities of the Center for Behavioral Health Statistics and Quality to the National Mental Health Policy Laboratory (page 102)
Establish a clearinghouse of evidence-based practices (page 106)
Unfortunately there is no mention of consumers, families or youth involved in this review.
Limitations on Authority (page 133)
No financial assistance to any program without evidence-based practices (page 133)
If you have made it this far in this lengthy post you know that this leads back to the question "What is an evidence-based practice and who is involved in deciding that?" From reading the full text of the proposed bill the decision makers are definitely skewed toward the medical community with a strong focus on a narrow slice of the overall population of individuals needing mental health services.
Elimination of unauthorized SAMHSA programs without explicit statutory authorization (page 134)
The proposed bill goes on to say "The Assistant Secretary for Mental Health and Substance Use Disorders shall seek to enter into an arrangement with the Institute of Medicine under which the Institute (or, if the Institute declines to enter into such arrangement, another appropriate entity) agrees to submit a report to the Congress not later than July 31, 2014, identifying each program, project, or activity to be terminated under subsection (a).
So, there you have it. Quite a bit to chew on and I cut this post down significantly. Please take the time to read the proposed bill. Whether it gains traction in the House or not it is important to remember that this proposed bill reflects the thinking of many. If you are concerned about this, as we are, then you might want to consider an education campaign.
Next week we will share our collaborative efforts with Maryland-based mental health providers, adult and youth representatives with experience receiving mental health services, and family advocates and other agency representatives to put together a site visit for Senate and House Appropriations Committee staff to not only show them what a coordinated system of care approach looks like in the effective provision of services and supports for young adults with mental health challenges, but also to provide them the opportunity for one on one dialogue with youth and adults who utilize mental health services, families and the amazingly dedicated professionals who work side by side with them. We began organizing this effort for Senate Appropriations staff as a result of our inquiry into the Healthy Transitions Initiative in August of this year. Senate Appropriations Committee staff have agreed to come and we will be extending an invitation to House Appropriations Committee staff this week. I will give you full details in the Morning Zen post this coming Friday.
What is so important about our education campaign is that it is not focused on one grant or particular service. We are not bringing staffers to a visit to ask for money. We are bringing staffers to a visit to let them experience firsthand the importance of a comprehensive approach to meeting (in this case) the needs of young adults with mental health challenges. Sounds like a systems of care approach to me!
And finally, here is a sampling of different individual and organizational analyses and reactions to the proposed bill, both pro and con. Remember, an educated voice is a powerful voice.
For the proposed bill
Against the proposed bill
On my mind: Fighting stigma, building communitiy
By Bob Carolla
It is unacceptable that people who are suffering from and struggling with mental health issues in their life be at risk of injury, trauma, assault or even death in their interactions with police officers whose only training as "being a good police officer" leads them to a course of action that produces tragedy. There is ample evidence that CIT training (Crisis Intervention Training) makes a difference. The "Memphis Model" has made an impact in many communities both large and small. Tragedies may continue to happen, but to expect and accept them as the cost of doing business as normal is simply and deeply wrong.
A few days ago I talked with a man whose 39-year-old "mentally ill" son had been attacked, beaten up and tasered by police in this community who "were doing their job." Over the last few days I have spent a lot of time thinking about other incidents I either have direct knowledge of or I have heard about. And it has left me deeply troubled.
There are lots of people to blame and many people seem intent on solving the problem by trying to figure out who to blame. I hear people talk about needing more psychiatric hospitals, more coercive treatment options etc. I dont think there are really going to be an appreciable increase in psychiatric beds regardless of where you stand on the argument, rather you think it is a good idea or not. Financially it simply not an option. Arguments that vastly increasing AOT (assisted outpatient treatment) can solve the problem are not honest or realistic.
Someone will be the next Kelly Thomas. Someone will be the next person a police officer faces on the street corner or in their home or in the jail. It is happening right now. It will be happening in a few minutes. It will be happening tomorrow. And what stops it from being someone you know, someone you care about, or even you.
It is pointless to bemoan the fact that police are being asked to do things they are not trained to do and then do absolutely nothing about providing them that training. It is as unfair to the officer who is trying to do the best he can as it is to the person he is trying to deal with.
As far as I know the decision to implement CIT training is a local decision and depends very much on the financial resources of that community as well as the commitment to training that local officials may have. Many communities, like the one I live in, have gotten officers involved in a piecemeal fashion but they are largely at the mercy of who offers the training and when.
Again, no one should be the victim of where they live. I have been following in recent days the effort of New York state to deal with the same issue. The proposal that is currently being fought over is whether or not to include in the state budget funds for what they are calling a "center of excellence for CIT training." The idea, as I understand it, is for the state to establish a resource that could help communities access CIT training in a way they can afford and in a way that is most effective to them. It shifts the burden of the argument from "is it practical? Can we afford to do it?" to "Can we afford to not do it?"
It is too late for anything like that to happen in Tennessee this year, but is not to late to start the conversation. Several other states already have chosen to establish something like "a center of excellence for CIT." Some have found access to federal funding. Others have found grants from other sources.
In the end, it not only saves lives but also saves money because of the injuries and traumas it prevents.
A couple of days I had a post which included a video of the beating of Kelly Thomas. I made myself watch the video several days before the post and was horrified. If you havent watched the video and still doubt the importance of what I am talking about watch the video yourself. I have also seen videos of other beatings from virtually all over the country. It is more than a Tennessee problem but it is a Tennessee problem.
In the days and weeks that follow I will be revisiting this conversation over and over. I am by no means anywhere close to an expert. If you think you know more than me on the subject there is a good chance you are correct. My goal is to start a conversation, a widespread conversation, in Tennessee that prepares the ground to talk about this issue not as one that affects isolated localities but every person in this state.
It is a conversation I hope you will join.
Larry Drain, hope works community blog
Medicare Rule Changes May Restrict Drug Choices for Seniors
The CMS decisions about which drugs to protect were supposed to be based on whether the drugs were needed to prevent increased doctor visits, hospitalizations, persistent disability, incapacitation or death that would otherwise occur within seven days if the drugs were not given. The choices about which drugs to remove from protection fail that test because, with acute mental illness, seven days without medication could easily lead to hospitalization, incapacitation or death. The same constraint exists for some 500,000 transplant patients. Seven days without the right medication could result in transplant rejection.
The quote above is from the article linked. My jaw dropped when I read it. CMS is proposing to drop certain drug classes from the status of protected medication. The idea is to save money. The article says it may save around 10% I believe.
My jaw dropped when I read the criteria. It basically says that if doing without a drug for 7 days wont kill you, incapacitate, or put you in the hospital you really didnt need it to the point where your access to the medication is guaranteed to begin with.
WHAT ABOUT THE EIGHTH DAY??
Is it just me or does this not sound simply stupid, simply arbitrary and simply mean? How in the world do you decide as a matter of cost containment that if someone doesnt die fast enough that dont really need a medication? Who should have that kind of power?? Should anyone??
I read all the stuff about percents...percents of cost...percents of savings. There is another "p" word-- PEOPLE. Somehow it seems like it got lost.
Larry Drain at HOPEWORKSCOMMUNITY
ACA Enrollment Ending Soon -
Hi folks, we just want to remind everyone that the enrollment period for Patient Protection and Affordable Care Act is drawing to a close for this season. The last day to enroll will be March 31st. To be covered by April 1st, the last day to enroll is even earlier - March 15. Enrollment will start up again November 15th and go through January 15th.
Below are links to Tennessee events and resources you might contact for enrollment assistance. Please forward this email to anyone and everyone you know who needs assistance or needs to hurry up and get covered already!
If you've already enrolled we'd love to hear from you. Click here to share your story and tell us about your enrollment experience.
Thanks everyone and best of health to you from all of us at THCC
By: Tennessee Health Care Campaign
Scott Walker Emails: Former Top Aide Wrote
'No One Cares About
Chris GentilvisoThe Huffington Post02/22/14 11:31 AM ET
Wednesday's release of thousands of pages of emails from Scott Walker's tenure as Milwaukee County Executive show a former top aide wrote that "no one cares about crazy people."
Back in 2006, the Milwaukee Journal Sentinel reported on the death of Cindy Anczak. The 33-year-old woman died of starvation complications while being treated at the Milwaukee County Mental Health Complex for bipolar disorder.
According to the Center for Media and Democracy's PR Watch, Anczak's parents filed a legal complaint in October 2010, which was brought by Walker staffers to the attention of then-Deputy Chief of Staff Kelly Rindfleisch.
"Totally coincidental to the election," replied Walker campaign advisor RJ Johnson, about the timing of the filing.
"Corp council [the County's attorney] wants to offer 50-100k," emailed Rindfleisch.
"Ok - any time after Nov. 2nd would be the time to offer a settlement," replied Keith Gilkes, who headed Walker's campaign.
"Barrett is going to make this the center of his campaign," Rindfleisch wrote in another email.
"yep and he is still going to lose because that is his base," replied Joan Hansen, a County official.
"Yep," Rindfleisch wrote. "No one cares about crazy people."
The AP noted on Wednesday that Rindfleisch was convicted in 2012 of felony misconduct in office for doing campaign work for a GOP lieutenant governor candidate on government time. She was sentenced to six months in jail and three years of probation, and is appealing her conviction on the grounds that Fourth Amendment rights were violated.
"Most of those would be four or more years old and they've gone through a legal process ... a multi-year extensive legal process by which each and every one of those communications was reviewed by authorities," Walker told reporters in Madison on Wednesday. "I'm confident that they reviewed them and they chose to act on the ones they've already made public."
Mental health stigma resides everywhereStigma resides everywhere, especially mental health stigma. The urge to quiet the voices of those who live with challenges, those who are different or those whose choices don’t mirror the “norm,” seems to be overwhelming as of late. “Don’t air your dirty laundry.” How many of us heard that admonition as children? When we talk about mental illness, too often there are only two approaches discussed: sick or well, right or wrong. We talk about strong people and the weak people, those who feed their depression and mental illness and those who stoically rise above. When we talk about mental health in such limited parameters, we strip it of the crippling humanity that makes it possible: agony, loneliness, shame, trauma and stigma. We just tell people to think the right way, get the right amount of sleep and exercise, take the right meds, and when they don’t, we tell them to go away. In our current society, the mentally ill are considered the disease as much as the illness itself.
Here’s the rub: Change and recovery occur when things are faced. An acquaintance asked me recently why I speak openly about mental health recovery and surviving domestic violence and sexual assault. This well-meaning person felt that by airing my “dirty laundry,” I would cause myself more pain. Actually the opposite is true. When the mentally ill speak openly, others know they are not alone. Others learn what worked and what didn’t. By speaking – at first a whisper, then a roar – we lessen pain’s power. We learn to cope, we change the norm and we affect the changes we want to see.
Be part of the conversationThere is a well-known saying in mental health and social work circles:
“Nothing about us, without us.”
Only by being part of the conversation can we affect legislation, self-advocate for better care and show society that those with mental health conditions can live healthy, productive lives.
Why should we stand up and “air our dirty laundry?” To help those unaffected by mental illness but whom are the gatekeepers of the systems we need access to, to understand our reality. Because it reflects one-in-four person’s realities. Because stigma born from misconceptions can only be corrected by those who are affected. Because society needs to see us living lives and being productive with the proper treatment. Because we learn the most from those whose voices society tries the most to silence.
Mental Health Stigma: Airing our “Dirty Laundry” Posted on February 8, 2014 by Paulissa Kipp
Resource Highlight: Core Beliefs of Recovery
By DBSA national web site
Avid peer supporter, blogger and mental health advocate in Tennessee, Larry Drain has composed a wonderful post on the core beliefs of recovery. This worksheet lists the core beliefs of recovery and the internal beliefs we may hold that are the opposite of these recovery beliefs. The idea is to evaluate where you fall between these two beliefs and think of how you may be able to create a better life by working more towards the recovery beliefs.
You may wish to use this tool in support group meetings to help individuals think through changes they want to make.
Core Beliefs of Recovery Tool at www.DBSAlliance.org
(Check out many more chapter resources available on the Chapter Management Section of the DBSA website!)
S.L. Brannon D.Div..