Senate agrees to pass lame duck mental health reform bill

(11/25/16) Today, a healthcare reform package, including language from Congressman Tim Murphy’s (PA-18) and Rep. Eddie Bernice Johnsons (D. TX) Helping Families in Mental Health Crisis Act (H.R. 2646) and Chairman Fred Upton’s 21st Century Cures Act (H.R. 6), was finalized. The reform package will be voted on in the Senate when they return after Thanksgiving and will then have to be reconciled with what the House passed, presumably a fait acompli. I believe it also includes language from Sen. John Cornyn's S2002.

A description of bill is here Some of the more interesting stuff starts on page 18 and 29

A copy of the bill is here 

There is AOT funding and reform of the Substance Abuse and Mental Health Services Administration (SAMHSA) in the bill.  Here are the provisions we were most interested in having included. Some were, others were not.

Congressman Murphy  has been the true hero of this process leaving his door open to, and never abandoning those of us who have seriously mentally ill relatives. He released the  following statement:

“This is a landmark moment. The federal government’s course in addressing mental health and illness in America is being fundamentally changed. Congress has finally come together in a bipartisan effort to bring serious mental illness out of the shadows. Now federal agencies will be moving from feel-good programs for behavioral wellness to ones that emphasize evidence-based care for those at highest risk and those with symptoms of serious mental illness. We've achieved long-sought reforms by creating an Assistant Secretary for Mental Health and Substance Use to elevate, integrate and coordinate programs; investing in services for the most difficult to treat cases; expanding the mental health workforce, and so much more.“It couldn't be more fitting that we've reached this bipartisan agreement between the House and Senate at the close of Thanksgiving week. I am tremendously grateful for everyone who joined in the cause because we wouldn't be here if not for the unwavering efforts of the of the families, caregivers, providers and organizations that worked tirelessly to fix our broken mental health system. We won't solve it all in in one bill and we didn't get everything we needed, but we needed everything we got. It is my pledge to the patients and families in crisis that I will never stop fighting to deliver treatment before tragedy for those most in need.” 

The Helping Families in Mental Health Crisis Act unanimously passed the House Energy and Commerce Committee, 53-0, in June and passed the U.S. House of Representatives, 422-2, in July More information on the bill can be found here.

Mental Illness Policy Org thanks the thousands of families of the seriously ill who  joined with us to educate Congress that the needs of the seriously ill are different than those of the higher functioning, and that those needs have largely been ignored by government. By focusing SAMHSA on the seriously ill, funding Assisted Outpatient Treatment and looking for ways to free families of the seriously ill from HIPAA Handcuffs that prevent them from facilitating treatment, we believe the lives of all Americans--those with serious mental illness and those without--will be better served. - DJ Jaffe, Executive Director, Mental Illness Policy Org.

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Senate agrees to pass lame duck mental health reform bill

(11/25/16) Today, a healthcare reform package, including language from Congressman Tim Murphy’s (PA-18) and Rep. Eddie Bernice Johnsons (D. TX) Helping Families in Mental Health Crisis Act (H.R. 2646) and Chairman Fred Upton’s 21st Century Cures Act (H.R. 6), was finalized. The reform package will be voted on in the Senate when they return after Thanksgiving and will then have to be reconciled with what the House passed, presumably a fait acompli. I believe it also includes language from Sen. John Cornyn's S2002.

A copy of the bill is here 

There is AOT funding and reform of the Substance Abuse and Mental Health Services Administration (SAMHSA) in the bill.  Here are the provisions we were most interested in having included. Some were, others were not.

Congressman Murphy  has been the true hero of this process leaving his door open to, and never abandoning those of us who have seriously mentally ill relatives. He released the  following statement:

“This is a landmark moment. The federal government’s course in addressing mental health and illness in America is being fundamentally changed. Congress has finally come together in a bipartisan effort to bring serious mental illness out of the shadows. Now federal agencies will be moving from feel-good programs for behavioral wellness to ones that emphasize evidence-based care for those at highest risk and those with symptoms of serious mental illness. We've achieved long-sought reforms by creating an Assistant Secretary for Mental Health and Substance Use to elevate, integrate and coordinate programs; investing in services for the most difficult to treat cases; expanding the mental health workforce, and so much more.“It couldn't be more fitting that we've reached this bipartisan agreement between the House and Senate at the close of Thanksgiving week. I am tremendously grateful for everyone who joined in the cause because we wouldn't be here if not for the unwavering efforts of the of the families, caregivers, providers and organizations that worked tirelessly to fix our broken mental health system. We won't solve it all in in one bill and we didn't get everything we needed, but we needed everything we got. It is my pledge to the patients and families in crisis that I will never stop fighting to deliver treatment before tragedy for those most in need.” 

The Helping Families in Mental Health Crisis Act unanimously passed the House Energy and Commerce Committee, 53-0, in June and passed the U.S. House of Representatives, 422-2, in July More information on the bill can be found here.

Mental Illness Policy Org thanks the thousands of families of the seriously ill who  joined with us to educate Congress that the needs of the seriously ill are different than those of the higher functioning, and that those needs have largely been ignored by government. By focusing SAMHSA on the seriously ill, funding Assisted Outpatient Treatment and looking for ways to free families of the seriously ill from HIPAA Handcuffs that prevent them from facilitating treatment, we believe the lives of all Americans--those with serious mental illness and those without--will be better served. - DJ Jaffe, Executive Director, Mental Illness Policy Org.

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Senate agrees to pass lame duck mental health reform bill

(11/25/16) Today, a healthcare reform package, including language from Congressman Tim Murphy’s (PA-18) and Rep. Eddie Bernice Johnsons (D. TX) Helping Families in Mental Health Crisis Act (H.R. 2646) and Chairman Fred Upton’s 21st Century Cures Act (H.R. 6), was finalized. The reform package will be voted on in the Senate when they return after Thanksgiving and will then have to be reconciled with what the House passed, presumably a fait acompli. I believe it also includes language from Sen. John Cornyn's S2002.

A copy of the bill is here 

There is AOT funding and reform of the Substance Abuse and Mental Health Services Administration (SAMHSA) in the bill.  Here are the provisions we were most interested in having included. Some were, others were not.

Congressman Murphy  has been the true hero of this process leaving his door open to, and never abandoning those of us who have seriously mentally ill relatives. He released the  following statement:

“This is a landmark moment. The federal government’s course in addressing mental health and illness in America is being fundamentally changed. Congress has finally come together in a bipartisan effort to bring serious mental illness out of the shadows. Now federal agencies will be moving from feel-good programs for behavioral wellness to ones that emphasize evidence-based care for those at highest risk and those with symptoms of serious mental illness. We've achieved long-sought reforms by creating an Assistant Secretary for Mental Health and Substance Use to elevate, integrate and coordinate programs; investing in services for the most difficult to treat cases; expanding the mental health workforce, and so much more.“It couldn't be more fitting that we've reached this bipartisan agreement between the House and Senate at the close of Thanksgiving week. I am tremendously grateful for everyone who joined in the cause because we wouldn't be here if not for the unwavering efforts of the of the families, caregivers, providers and organizations that worked tirelessly to fix our broken mental health system. We won't solve it all in in one bill and we didn't get everything we needed, but we needed everything we got. It is my pledge to the patients and families in crisis that I will never stop fighting to deliver treatment before tragedy for those most in need.” 

The Helping Families in Mental Health Crisis Act unanimously passed the House Energy and Commerce Committee, 53-0, in June and passed the U.S. House of Representatives, 422-2, in July More information on the bill can be found here.

Mental Illness Policy Org thanks the thousands of families of the seriously ill who  joined with us to educate Congress that the needs of the seriously ill are different than those of the higher functioning, and that those needs have largely been ignored by government. By focusing SAMHSA on the seriously ill, funding Assisted Outpatient Treatment and looking for ways to free families of the seriously ill from HIPAA Handcuffs that prevent them from facilitating treatment, we believe the lives of all Americans--those with serious mental illness and those without--will be better served. - DJ Jaffe, Executive Director, Mental Illness Policy Org.

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Pass a strong H.R. 2646 focused on seriously mentally ill

Statement by DJ Jaffe, Exec. Dir (6.14.2016)

 “H.R. 2646 sends the seriously mentally ill to the head of the line for services rather than to jails, shelters, prisons and morgues.”

“The Helping Families in Mental Health Crisis Act (HR2646) being proposed by Representatives Tim Murphy (R., PA) and E.B. Johnson (D., TX) starts to bring sanity to the insane mental health policies that are rampant in government. Historically, government agencies have ignored the seriously ill in order to promote “mental wellness” in all others. This bill starts to bring that practice to an end by focusing government on the elephant in the room: getting evidence-based treatment to adults known to be seriously mentally ill.  It replaces years of federal mission-creep with a dose of mission-control. That will help reduce homelessness, arrest, incarceration, hospitalization, and violence, while saving taxpayers money.” 

“We thank Representatives Tim Murphy, E.B Johnson, Fred Upton and Frank Pallone. We urge the E&C Committee to put a doctor at the head of SAMHSA and CMHS, fund Assisted Outpatient Treatment, increase the number of hospital beds, free parents from HIPAA Handcuffs and start to focus federal efforts on the elephant in the room: getting science based treatment to adults with serious mental illness, rather than on programs based on pop-psychology and pseudo-science.

(End of statement)

Assisted Outpatient Treatment (AOT) (See research summary: http://mentalillnesspolicy.org/national-studies/aotworks.pdf)

• Cuts homelessness, arrest, incarceration, violence and hospitalization for the most seriously ill by 70%.  
• Saves taxpayers 50% of the cost of care.
• Only for the small group of the most seriously ill who refuse or are unable to comply with voluntary treatment and already put themselves or others at-risk.
• Supported by Int’l Assoc. of Chiefs of Police, National Sheriff’s Assoc., SAMHSA, DOJ, AHRQ, NAMI, and others.

Reform SAMHSA and CMHS (See http://mentalillnesspolicy.org/samhsa.html)

• According to SAMHSA’s former Chief Medical Officer:

“SAMHSA does not address the treatment needs of the most vulnerable in our society. Rather, the unit within SAMHSA charged with addressing these disorders, the Center for Mental Health Services, chooses to focus on its own definition of “recovery,” which generally ignores the treatment of mental disorders…There is a perceptible hostility toward psychiatric medicine: a resistance to addressing the treatment needs of those with serious mental illness and a questioning by some at SAMHSA as to whether mental disorders even exist—for example, is psychosis just a “different way of thinking for some experiencing stress?” (http://www.psychiatrictimes.com/depression/federal-government-ignores-treatment-needs-americans-serious-mental-illness/page/0/1)

• SAMHSA and CMHS replaced the “medical model” with an internally invented “recovery model” that requires even the most seriously ill to “self-direct” their own care. (John Hinckley was ‘self-directing’ when he tried to get a date with Jodi Foster by shooting Pres. Reagan)
• There is virtually no support for SAMHSA or CMHS other than from the organizations they fund that want to continue to receive funds free of an obligation to serve the seriously ill.  

Other ways to improve care for seriously mentally ill

• Create hospital beds 2) Free parents from HIPAA Handcuffs 3) rein in anti-treatment activities of PAIMI.

We hope legislators will put a doctor at the head of both SAMHSA and CMHS like all other federal medical agencies. We also hope they will define "evidence-based," a term used throughout the bill to mean

“a program or practice that has independent evidence it improves a meaningful outcome in adults with mental illness or children with serious emotional disturbance.”   “Meaningful outcomes" includes reductions in homelessness, hospitalization, arrest, incarceration, violence, and suicide or other outcomes."

SAMHSA and CMHS rarely do any of that. The evidence they use is not independent, the programs are not for mentally ill, and the outcomes they measur are rarely the meaningful ones.

# # #


Mental Illness Policy Org. is a non-partisan, science-based think tank focused exclusively on the 4% of adults who have the most serious mental illnesses. We accept no government, healthcare or pharmaceutical company funding and are supported almost exclusively by families who have seriously mentally ill loved ones who the mental health system refused to treat and experienced heartbreaking tragedies as a result.

Mental Health Advocates versus Mental Illness Advocates

Excerpts from Speech to NAMI/NYS Convention

By DJ Jaffe

Exec. Dir. Mental Illness Policy Org.

November 15, 2013

I am supposed to talk on legislation here and in Washington, and I would be glad to talk about that. But before beginning I want to make clear that like most of you, I am not a mental health advocate. 

Like most of you, I am a mental illness advocate.  I think we need less mental health spending and more mental illness spending.  It is the most seriously ill not the worried-well, who disproportionately become homeless, commit crime, become violent, get arrested incarcerated or hospitalized. 360,000 are behind bars and 200,000 homeless because we are now focused on improving mental health, rather than treating serious mental illness.

My number one message is that we have to stop ignoring the most seriously ill. Send them to the front of the line for services rather than jails shelters prisons and morgues.  I’ll talk about how mental health advocates ignore the seriously ill, followed by how the debate between mental health and mental illness is being reflected in legislation in Washington and Albany.

Now before beginning, I admit the boundary between mental health and mental illness is debatable, but the extremities are clear. 100% of the population can have their mental health improved. 20% have some sort of illness that can be found in DSM, mainly minor illnesses like anxiety. And most of the illnesses in DSM are minor. But only 4.2% have a serious mental illness like schizophrenia, treatment resistant bipolar, major severe depression or another illness that prevents them from functioning.

Historically, people with serious mental illness were a priority because our budget was spent on the hospitalized. But mental health advocates have changed our focus. The federal government spends $130 billion mental health dollars, much on improving the mental health of all Americans-or as former NYS OMH Commissioner Michael Hogan argued, “to create hope filled environments where people can grow”

I say we stop ignoring the seriously mentally ill.

That distinction between mental health and mental illness is the main debate going on today around the country and is certainly at the core of the two bills Congress is now considering and was at the core of some bills being considered in New York like the SAFE Gun Control Legislation.  NAMI/NYS is one of the few groups doing both.  They have always done a stellar job at trying to improve the mental health of the 20% and they also advocate for the 4%. So if someone asks me, “Where do I stand” it is with NAMI/NYS. Although I should add, my comments today are mine, not theirs. 

Let me talk about how mental health advocates drive care away from the most seriously ill. 

Mental "health" advocates claim everyone is well enough to volunteer for treatment. That is simply not true. As Congressman Murphy-who is also a psychologist, mentioned last night, some have anosognosia: They are so sick, they don’t know they are sick because the brain is impaired so insight is lacking. When you see someone walking down the street screaming they are the Messiah it is not because they think they are the Messiah. They know it. Their illness tells them it is so.

We have to stop ignoring the seriously ill  

Other mental "health" advocates claim mental illness affects everyone and claim all mental illness is serious. They are wrong. All mental illness is not serious. Many people I worked with including myself, have had or have depression, anxiety, have trouble sleeping, take Zoloft or Prozac, or nothing and do quite well.  We don’t need funds diverted from the seriously ill to the highest functioning.

Mental "health" advocates claim everyone recovers. That is False. Some do not. They actually hide those who don’t recover. You won’t see the homeless and psychotic in their Mental Health Awareness Week PSAs because they want everyone to believe all mentally ill are high functioning. Trying to gain sympathy for mental illness by only showing the high functioning is like trying to end hunger in Africa, by only showing the well-fed.

We have to stop ignoring the seriously ill

There are two trade associations here in Albany that do some good work for the high functioning, but claim to speak for those with serious mental illness. They want OMH to close hospitals that serve the seriously ill and turn the money over to them.  That would be wrong. We are short 95000 hospital beds, nationwide and 4000 in NY, even if we had perfect community services.  When hospitals go down incarceration goes up. There are so few hospitals, today it’s harder to get into Bellevue than Harvard and once in you’ll be discharged sicker and quicker. Here in Albany last week Desmond Wyatt was released from the Capital District Psychiatric Center and killed his mother the next day.  His brother told police Desmond was hearing voices but that didn’t stop the hospital from releasing him.

We have to stop ignoring the seriously ill.

Mental health advocates work to convince the public that violence is not associated with mental illness. That may be true for the high functioning but violence is clearly associated with untreated serious mental illness. To convince the public mentally ill are not more violent, mental health advocates quote studies of the treated. Those studies prove treatment works, not that the untreated are not more violent than others. Or they quote studies of the 20% with any mental illness not the 4% with serious mental illness. Their studies are of those in the community and therefore exclude the violent: those in jails, in prisons, involuntarily committed, or have completed suicide.

They argue even talking about violence causes stigma. Talking about violence is a prerequisite to reducing it. It is violence by the small minority that tars the non-violent majority. Their failure to admit to violence is preventing us from implementing policies to reduce it.

We have to stop ignoring the seriously ill.

Current laws prevent people from getting treatment until after they become danger to self or others. That’s ludicrous. Laws should prevent violence not require it. Think seatbelts. But mental "health" advocates want civil commitment to be even more difficult. They argue involuntary treatment is bad without recognizing jail and prison are worse. They argue against medications and restraint and as the NY Times pointed out on Monday that is causing hospitals to become dangerous places. Patients can’t be restrained so hospitals call police. Mental health advocacy is causing seriously mentally ill patients into prisoners.

We have to stop ignoring the seriously ill.

Mental Health Advocates are working to stop Assisted Outpatient Treatment (Kendra’s Law). AOT is the most successful treatment for the small group of the most seriously ill who already accumulated multiple incidents of violence, arrest, incarceration, or needless hospitalization because of their refusal, actually their inability, to be well enough to volunteer for treatment. Kendra’s allows courts to order six months of mandated and monitored community treatment.  It is less restrictive than the alternatives: inpatient commitment and incarceration. It reduces arrest, suicide, hospitalization and violence among people with serious mental illness over 70% each and cut costs in half creating more funds for services for all.

Peer support may do something. But it is not proven to do anything like what Kendra’s Law does. But mental health advocates want to replace Kendra’s Law with peer support.

We have to stop ignoring the seriously ill

Mental "health"  advocates encourage government to spend more on prediction and prevention. As we heard in multiple sessions yesterday, we don’t know how to predict or prevent serious mental illness because we don’t know what causes it.  They argue we should focus our spending on children because half of all mental illness begins before age 14.  But the statement is only true if you include substance abuse. The study the claim is based on actually EXCLUDED serious mental illnesses like schizophrenia and bipolar. Serious mental illness begins in late teens and early twenties and continues after that. That’s where we have to focus our attention.

Mental "health" advocates argue mental illness is associated with bad grades, poverty, single parent households, and their latest cause, bullying and cyberbullying so we should divert funds meant to help the seriously ill to improve grades, end poverty, improve marriages and address cyberbullying.  Those are worthy social services issues but are not mental illnesses. Spending mental health funds on those diverts attention from mental illness.   Mental "health" advocates claim trauma is a mental illness. Trauma is not a mental illness. PTSD is. It can be extreme or mild.

Stop Diverting the Money!

Mental  "health" advocates blame police when something goes wrong, and want more CIT training as do I. But police only step in when one condition has been met: The mental health system failed. And mental health advocates fail to recognize that as their diverting funds to the tangential rather than the consequential is largely responsible for the system failing. As mental 'health" advocates abandoned advocating for the seriously ill, criminal justice has stepped up: Largely thanks to Chief Biasotti, the International and NYS Associations of Chiefs of Police, Dept. of Justice, National Sheriffs Association, and others have become the leading voices on how to improve care for the seriously ill.

Now I’d like to turn to how this debate between mental health and serious mental illness is playing out in New York and Washington.

What is interesting to me, is that generally it is Republicans, not Democrats who are helping the seriously ill.  I am a left wing Democrat so it pains me to say, but my party is generally oblivious to the fact that throwing more money at mental health does not improve treatment for people with serious mental illness. Democrats have been captured by mental health advocates and therefore ignore unpleasant truths like not everyone recovers, sometimes hospitals are needed; and left untreated a small subset of the most seriously ill do become violent.  

For example, in NY, when Governor Cuomo said he was going to pass legislation requiring therapists to report potentially dangerous mentally ill to criminal justice so they could be banned from owning firearms, there was no way to stop it. But Republicans inserted provisions requiring the reports to go through county mental health directors rather than directly from therapist to criminal justice. Why? Because that was a way to force county mental health departments to become aware of seriously mentally ill who live in their counties. The hope was they would offer treatment not just take guns away.  Directors fought the provision, preferring to keep their heads in the sand.  They called it an ‘unfunded mandate’. Helping the seriously ill is not an unfunded mandate, it is their mandate.

Much of the rest of the speech was dedicated to explaining the provisions of the Helping Families in Mental Health Crisis Act (HR 3717), why a competing bill doesn't help, and myths raised by mental health advocates about it. 

To improve care for people with serious mental illness money is not missing, leadership is. We have to stop listening to mental health advocates and start listening to mental illness advocates. We need to replace mission creep with mission control. As Police Chief Biasotti, testified to Congress,

We have two mental health systems today, serving two mutually exclusive populations: Community programs serve those who seek and accept treatment. Those who refuse, or are too sick to seek treatment voluntarily, become a law enforcement responsibility. …(M)ental health officials seem unwilling to recognize or take responsibility for this second more symptomatic group.”

We have to stop ignoring the seriously ill.

Thank you.

About Assisted Outpatient Treatment (AOT)

Assisted Outpatient Treatment (AOT) is for a very small group of the most seriously mentally ill who already accumulated multiple incidents of hospitalization arrest or incarceration associated with their failing to stay in voluntary treatment. AOT allows judges, after full due process to require certain mentally ill to accept six months of mandated and monitored treatment as a condition for living in the community. It provides an off ramp before incarceration. As Linda Dunn said, Assisted Outpatient Treatment is like putting a fence by the edge of the cliff rather than an ambulance at the bottom. (Barnidge 2014)

The research on AOT is extensive and positive. (Mental Illness Policy Org 2013). Six months of mandated and monitored treatment has been shown to reduce homelessness 74%; hospitalization 77%; arrest 83%; incarceration 87%, physical harm to others 47%; property destruction 46%; suicide attempts 55%; and substance abuse (48%). By replacing expensive incarceration and hospitalization with less expensive community care Assisted Outpatient Treatment cuts costs to taxpayers in half. (Swanson, et al. 2013). AOT also reduces victimization. (V.A. Hiday 2002). These results are particularly outstanding because AOT is limited to the most seriously ill, often a very hard to treat population.

NAMI/National less than honest with members

Call 202 224 3121 or go here and urge your U.S. Representative to co-sponsor HR 3717, the Helping Families in Mental Health Crisis Act.

NAMI State and local chapters do brilliant work trying to improve care for people with the most serious mental illnesses and provide comfort to them and their families. NAMI/National is ignoring the most seriously ill in order to be politically correct.

Representative Tim Murphy (R. PA) has proposed HR3717 the “Helping Families in Mental Health Crisis” that does much of what NAMI local and state members have been begging for.

If You Don't Ask Your US Rep to Cosponsor Helping Families in Mental Health Crisis Act, You are Part of Problem.

Call your US Rep to ask them to co-sponsor HR-3717, the Helping Families in Mental Health Crisis Act for the 6 reasons below:
Background

Five percent of Americans have serious mental illness (i.e., schizophrenia, severe bipolar). Twenty percent have “any” mental illness (i.e., some form of depression, stress, anxiety, social phobia, etc.).  It is the 5% who are most likely to become homeless, suicidal, criminal, arrested, incarcerated and violent. Up to 40% of the most seriously ill are so ill they do not know they are ill (“anosognosia”). While most mentally ill are not violent, that does not hold true for the untreated seriously mentally ill with anosognosia. We can not ignore them. Following are provisions in HR3717 that most directly improve care for the seriously ill and reduce the chance of violence, homelessness, suicide:

Please send letter in Support of Helping Families in Mental Health Crisis Act

If you are part of any organization (state or local NAMI, MHA, Prison Reform, Consumer Group, etc) that wants to help persons with serious mental illness, please send a letter on your letterhead, to Rep. Tim Murphy urging passage of Helping Families in Mental Health Crisis Act (HR 3717). They want as many letters of support from organizations as possible.

You can see the NAMI/NYS letter below and use it as a model. You can see other letters (ex. NAMI National, American Psychiatric Assoc., etc) at http://murphy.house.gov/helpingfamiliesinmentalhealthcrisisact#Letters%20of%20Support