Thursday, August 7, 2014

Setting the Record Straight

By Mary Giliberti, NAMI Executive Director

As Congress goes into its August recess, it has yet to act on legislative proposals to improve mental health care in the U.S.  Nearly two years after the Sandy Hook elementary school tragedy in Newtown, Conn. focused attention on the nation’s broken mental health system, there has been much discussion in Congress about how to improve mental health care but very little resolution.    

Two significant bills have been introduced in the U.S. House of Representatives, one by Representative Tim Murphy (R - Pa.), the other by Congressman Ron Barber (D. - Ariz.).  Both bills contain many excellent provisions that, if enacted, would represent major improvements in the mental health system. 

For example, both bills include urgent resources for suicide prevention. Suicide is currently the second leading cause of death for young adults in the U.S. Having lost someone close to me to suicide, I know the consequences of inaction in this area and the devastating impact of suicide on families and those close to the person.   

Both bills also contain multiple provisions to put more resources into jail diversion and community reentry for individuals living with mental illness involved with the criminal justice system. The criminalization of people living with mental illness is a profound injustice and violation of human rights. Recently, I visited the Cook County jail in Chicago and saw firsthand why this correctional institution has been characterized as the largest de-facto mental health treatment facility in the U.S. The numbers of people with mental illness housed there was sickening.

The two bills also contain provisions to protect access to psychiatric medications in Medicaid and Medicare. Both would eliminate the exclusion of mental health providers from existing federal resources to expand and improve health information technology and electronic health information systems. Both bills provide resources for better integration of mental and physical health care. Finally, both would permit same day billing in Medicaid for physical and mental health services—something which is currently not permitted and imposes terrible burdens on people who have to make separate appointments and arrange transportation multiple times. 

Representative Murphy has been tireless in his efforts over the past two years to elevate attention to issues and promote improvements in access and quality of mental health services. Prior to his hearings, there was little discussion on Capitol Hill of the poor outcomes experienced by far too many people living with mental illness. NAMI is grateful to him for his ongoing efforts. His dedication to improving mental health treatment and services cannot be questioned.

Representative Murphy’s bill is not without controversy and there have been differences of opinion within the mental health community over some provisions. These include provisions pertaining to the U.S. Substance Abuse and Mental Health Services Administration (SAMHSA), involuntary inpatient and outpatient commitment, the federal health privacy law (HIPAA), the Medicaid prohibition on paying for certain inpatient psychiatric treatment, and the federally funded Protection and Advocacy for Individuals with Mental Illness (PAIMI) program.

People on both sides of the issues have criticized NAMI for either supporting Representative Murphy’s bill or not being supportive enough. Although criticism can be constructive, some has been based on incomplete information. Some have failed to appreciate the harm that can come from infighting in any community and the need to find common ground and real solutions that can be enacted into law.

In a previous job, I served as disability counsel to the U.S. Senate’s Health, Education and Pensions (HELP) Committee. This experience more than any other shapes how I look at comprehensive mental health legislation. During my time on the Hill, I worked on several major bills and found that compromise led to bills that could clear both parties and both houses and usually led to policies that were successfully implemented. In the polarized political climate that currently prevails in Congress, sharp disagreements about specific provisions in bills only guarantee that nothing will pass.

Mental illness does not discriminate. It affects Republicans and Democrats—and their families—alike. In the weeks remaining before Congress adjourns, we need to drive that message home.

NAMI has been working hard behind the scenes to build consensus on some of the issues that are controversial. For example, we have recommended an alternative approach on HIPAA that would instill guidance in federal law clarifying that communication with families and caregivers is preferable in treatment and when it is permitted or not permitted.  

NAMI has long advocated repealing completely the federal Institutions for Mental Diseases (IMD) exclusion that prohibits federal Medicaid dollars from paying for inpatient treatment in certain types of psychiatric hospitals and facilities. Nonetheless, we support a narrower provision in the Murphy bill that would allow federal Medicaid dollars to be used for short-term acute inpatient psychiatric treatment. This represents reasonable compromise. Unfortunately, the IMD exclusion is not addressed in Representative Barber’s bill. NAMI continues to urge individuals and families affected by mental illness to call on Members of Congress to include it in comprehensive mental health legislation.

But repealing the IMD exclusion is not enough. A major journal article this month noted abysmal rates of follow-up care for people after they leave hospitals. The National Association of State Mental Health Program Directors (NASMHPD) recently issued a report which noted that inpatient beds must be part of community-based systems of care, not apart from them. 

We must demand better coordination of care for people reentering communities and better long term outcomes in treatment. Data on quality and outcomes of services in the mental health field is sorely lacking. Therefore, NAMI also strongly supports Representative Murphy’s call to create a national mental health policy laboratory to track outcomes.

Court-ordered Assisted Outpatient Treatment (AOT) is sometimes called the “third rail” in the mental health community for major reform. There are sharply polarized opinions on either side.  They all should be respected in a dialogue to seek common ground. NAMI policy supports AOT as a last resort. However, we urge more focus on earlier options (“first resorts”) because they can reduce crises before they occur and ensure that AOT is used for the right reasons—not because people cannot get help earlier on a voluntary basis.

NAMI also strongly supports first-episode psychosis programs that provide early intervention when young people first show symptoms of psychosis, offering treatment and coping strategies, support to families, and education and employment support services.  Comprehensive mental health legislation should support such programs including mechanisms for paying for such treatment through Medicaid and other funding sources.

Some people believe NAMI has not advocated for the elimination of SAMHSA because we receive money from the agency. In full disclosure, we receive 3 percent of our funding from SAMHSA. NAMI is funded by SAMHSA to run the STAR Center, a technical assistance project that among other things, promotes outreach to diverse cultural and age groups of people with mental illness—as well as individuals and families  involved in the criminal justice system.  

Even if NAMI’s funding from SAMHSA were larger, concerns that this compromises our advocacy are unwarranted. We will continue to urge SAMHSA and other federal agencies administering programs relevant to mental illness to focus resources on the needs of those whose lives have been significantly affected by mental illness. 

It is easy to criticize legislative proposals. It is harder to forge compromise. NAMI wants meaningful solutions to the mental health crisis in America. We need assertive action by Congress now.

The purity of rigid positions means little to a person sitting in a jail cell today who was in need of crisis care the night before, or to the family of this person. They mean little to a person living with both schizophrenia and diabetes who cannot get integrated treatment—and whose lifespan is likely to be 25 years shorter than the general population. It is time to join together to fight against the abysmal mental health system, not each other. If we fail to do so, we will have only ourselves to blame if Congress does nothing.      

On Thursday, September 4, attendees of the NAMI Convention and advocates throughout the country have the opportunity to have their voices heard on the importance of Congressional action through a National Day of Action. The message will be clear and simple—Congress must #Act4MentalHealth and pass comprehensive legislation to improve mental health care this year! Stay alert for more information about the National Day of Action in the coming weeks.

Visit NAMI’s website to read more about the two bills and NAMI’s position.

23 comments:

Anonymous said...

NAMI has been woefully negligent in its advocacy efforts for the Murphy bill. First, this bill has been active since December 2012 yet it was only about a week ago that you issued an advocacy alert to members asking them to call their Congressman. That should have happened in early 2013, and several times since then to build the pressure on Congress. Second, the Barber bill makes no improvements to the system, it merely throws more money at a broken system. While it may put more toward prevention, I find that laughable given that there is no scientific proof that schizophrenia or bipolar disorder can be prevented. Our science isn't that advanced yet. Third, NAMI has failed to take the lead in building a formidable coalition of judges, law enforcement associations, mental health providers and clinicians, families, and pharma to advocate for the Murphy bill. The only way it will get passed is if a coalition of groups from multiple sectors creates a groundswell of support and each has their members flooding Congress with letters of support, and if their lobbyists make it a top priority. And your Day of Action on September 4 is also laughable. Why did you choose a day when neither the House or Senate is in session? Did you never notice that Congreas is never in session during Labor Day week? That shows me you don't really care about change. You are just placating members so they can go gome feeling like they "did something." Your that advocacy for 3717 has been weak at best and you have blown this once in a generation opportunity to reform the system for families like mine. You have abandoned families who struggle each day to get their seriously ill loved ones treatment because they don't think they are ill or because care is denied. That is why I have joined a new organization called Treatment Before Tragedy -- a group of families who are advocating for 3717 and who all have seriously ill family members. We don't just meekly admit we support AOT as a last resort and then quickly change the subject to talk about first resorts like you do. We advocate for it strongly because we know there are so many who won't get care through any other means. And we aren't ashamed to say it like NAMI clearly is. We aren't in denial. We recognize that there are many seriously ill folks who cannot self direct their care and may need AOT to stay in care. And we are tired of waiting for NAMI to realize that and make our families a priority.

Gareth Fenley said...

I agree with Mary that "both bills contain many excellent provisions that, if enacted, would represent major improvements in the mental health system." That is what I've always thought.

As a strategy, I originally promoted the plan to "stop the Murphy bill" because of some toxic parts of it, especially as first introduced. (Yes - I read the bill.)

At this stage of the legislative process, I now generally agree with NAMI's approach to urge keeping the best parts, plus some added bits, all included in one comprehensive bill.

Kay Omholt-Montague said...

Excellent, well-researched and thoughtful article! To date, I do not think I have read a more sound "essay" on why/how all factions of the mental health system should work TOGETHER - not apart - in spite of our differences. I could not agree more! I truly believe we have far more in common than most of us believe. I, for one, would be willing to sit at any table with any/all players to craft a meaningful and effective "final product" for legislation. Kudos to the author of this article! No one - to date - has said it better!

Kay Omholt-Montague
August 7, 2014

Delaney Ruston said...

This is such a helpful post by Giliberti--the new NAMI Director. Thank you so much for this wonderful summary and call to action.
As a daughter who lost her father to suicide, after a life of under treatment for his schizophrenia, i am grateful that the proposed bills include resources for suicide prevention.
The key now is that we all talk to friends and family about the Bills so they can send letters and emails to Congress.
I have used film to spark discussion (such as in Unlisted: A Story of Suicide) but we don't need films, we need our will! Lets all get out and talk to people--perhaps a goal of 1 short conversation a day until Sept 4th. We can do this! Delaney Ruston

Phill Gunning said...

Well said - thanks Mary.

Ilene Flannery Wells said...

The National Alliance on Mental Illness (NAMI) has long held the position that the Medicaid Institutes for Mental Diseases Exclusion is discriminatory and should be fully repealed, as does many other mental health advocacy groups. Here is a quote from their website, unless it has since been taken down...

"Adults with severe mental illnesses, is the sole category for whose inpatient care Medicaid will not reimburse except under
circumstances which narrowly limit choice, and likely
compromise quality. Nearly forty[-seven] years after enactment,this has become discriminatory treatment." NAMI

Therefore, I do not understand why Ms. Giliberti would consider this section of HR3717 as "controversial".

Ilene Flannery Wells
Paul's Legacy Project
www.paulslegacyproject.org

LE said...

People that advocate for Murphy's bill have very sick family members, usually, but not always, an adult child. The idea that we're supposed to "forge compromise" is extremely hurtful. How do we do that when their lives have already been extremely compromised by an illness that in too many cases they have been unable to get help for? I don't care how many well meaning programs are instituted, nothing would have helped my daughter but involuntary treatment, which thankfully she received, long term hospitalization, which she did not receive so I quit my job to care for her, and residential housing, which she also did not receive which again has been taken care of by my loss of income. Being told that nobody can tell you the condition of your flamingly psychotic 19 year old daughter because she is an "adult" while you have no clue what is happening to her and she barely knows her name much less has the ability to understand what a release of information is, is not my idea of a compassionate or understanding system of health care for any illness, much less a system that cares for people with very serious brain disorders. So while I have been fervently advocating for Tim Murphy's bill, where exactly would you like me to forge compromise with my daughter's health? Seriously!

Sue Abderholden said...

Excellent! We need to work together and move forward those items everyone agrees upon. Thanks for your great work Mary!

Anonymous said...

Until Everyone in America stops arguing about the language, who said and who did, and get down to simply what is right to do and what is wrong to do. NOTHING will ever get solved or fixed. People will go on hurting others in an attempt to cry out for help without even knowing that is what they are doing. Those in their paths are affected. Our country spends more trying to prevent fixing and preventing rather than starting with prevention. We take years to argue what we know we need to do. Who is really crazy here? Those that are begging us to help them or those that need to fix them???

Anonymous said...

The IMD exclusion is a needed bsrrier to the unfettered expansion of hospitalization. It would cost over a billion dollars. The feds would take over paying for hospitalization and private providers would find a cash cow to expand private hospitals with few services. The money saved by substituting federal dollars for state dollars would not go to community services. It never had in the course of deinstitionalization.

Dave Lushbaugh said...

Excellent!

Anonymous said...

With it but there needs to be a provision that doctors put input into the hippa. Law. Sometimes we as categorically deemed mentally ill need the power to make our own choices for or lives. From someone whose family loves her but are traumatised by the illness and want to take over when she is clearly o.k.

Cynthia Waltz said...

I believe the only bill that we desperately need is Congressman Tim Murphy's bill, H.R.3717, Helping Families in Mental Health Crisis Act". Unfortunately the other bill is simply throwing money at the same ole archaic, broken down system. We don't need more of the same, we need a streamlined, reformed, renewed mental health bill that will stop wasting money on programs that DON'T and HAVE NOT worked in decades. H.R.3717 would help people in crisis that literally cause the most carnage in our country, seriously mentally ill who don't know their sick and refuse treatment but react to their symptoms, some with tragic results. Those who volunteer for services are not the issue as they seek help and recover. The biggest problem is not even being acknowledged by Health & Human Services and with H.R.3717 H&HS will finally be held accountable to provide services to this dire population. NAMI is so watered down and has never taken a stand for a call to action. They really need to get their act together. Treatment Advocacy on the other hand makes NAMI NATIONAL pale in comparison. Sorry NAMI, it's true what have you done for us lately?

John Tanner said...

Certainly we want to see the helpful provisions of both bills passed. As for the "controversial" provisions, we want to see NAMI use its best efforts to convince other organizations of the value both of reforming HIPAA and encouraging AOT. NAMI's position to have an information campaign on informing providers about the value of involving families is a bare minimum for HIPAA reform. The present provision that information can be shared when "in his professional judgment" the doctor believes it is in the patient's interest, needs to be extended to other health care workers besides doctors; and it needs to be emphasized that this can take place without the patients approval.
We once had to get a temporary guardianship to get information on our son's condition and whereabouts when he had fled treatment by going to another state. Until then the police were more helpful than his mental health care provider there. We followed up by going there and taking care of the situation.
I don't see any mention in your statement about trying to convince other organizations about the value of AOT. This should be seen as possible prevention of hospitalization, rather than a restriction on the patient's freedom. For this reason we give financial support to the Treatment Advocacy Center.
John Tanner

John Tanner said...

Certainly we want to see the helpful provisions of both bills passed. As for the "controversial" provisions, we want to see NAMI use its best efforts to convince other organizations of the value both of reforming HIPAA and encouraging AOT . NAMI's position to have an information campaign on informing providers about the value of involving families is a bare minimum for HIPAA reform. The present provision that information can be shared when in his "professional judgment" the doctor believes it is in the patient's interest, needs to be extended to other health care workers besides doctors; and it needs to be emphasized that this can take place without the patients approval.
We once had to get a temporary guardianship to get information on our son and his condition when he had fled treatment by going to another state. Until then the police were more helpful than his mental health care provider there. We followed up by going there and taking care of the situation.
I don't see any mention in your statement about trying to convince other organizations about the value of AOT. This should be seen as possible prevention of hospitalization and jail, rather than a restriction on the patient's freedom. For this reason we give financial support to the Treatment Advocacy Center.

Cynthia Waltz said...

Sadly, NAMI has become a watered down organization for years and their actions pale in comparison to Treatment Advocacy Center. If NAMI truly wants to take a stand they will make A CALL TO ACTION on Capitol Hill and support the bill introduced by Congressman Tim Murphy, H.R.3717, HELPING FAMILIES IN MENTAL HEALTH CRISIS ACT. This is the only bill that addresses the major problems with mental health services in our country. H.R.3717 completely overhauls our archaic mental health system which has been broken for 4 decades. It is the small population of seriously mentally ill left UNTREATED in our country that tragically leaves much human carnage; current mental health services do nothing for these people nor the families caring for them. How about TREAT THEM BEFORE TRAGEDIES occur? Every mass shooting reveals after the fact, families tried to no avail to get their adult loved ones into treatment but couldn't. Our current mental health system permits Health & Human Services officials to say there's nothing we can do; in lieu the really sick people fall through the cracks and our mental health services has ZERO accountability in intervening to get these people treatment. In addition, there aren't enough beds and no laws that supports intervention. One sad excuse after another. This is appalling in America. Guns are only the symptom as some use knives; the core of the problem is archaic laws, lack of treatment/sustained treatment,lack of beds, and housing. H.R.3717 helps families get mental health treatment for their loved ones as well as, holds mental health officials, i.e. Health & Human Services ACCOUNTABLE to provide those services by law and not drop the ball. Though both bills are important I would say H.R.3717 is a priority and NAMI should do all they can nationally, state and county wide to help this bill get passed.

Anonymous said...

Right on NAMI !!!!
Lets all unite for this common humanistic goal....

John Tanner said...

Certainly we want to see the helpful provisions of both bills passed. As for the "controversial" provisions, we want to see NAMI use its best efforts to convince other organizations of the value both of reforming HIPAA and encouraging AOT. NAMI's position to have an information campaign on informing providers about the value of involving families is a bare minimum for HIPAA reform. The present provision that information can be shared when in his professional judgment the doctor believes it is in the patient's interest, needs to be extended to other health care workers besides doctors; and it needs to be emphasized that this can take place without the patient's approval.
We once had to get a temporary guardianship to get information on our son and his condition when he had fled treatment by going to another state. Until then the police were more helpful than his mental health care provider there. We followed up by going there and taking care of the situation.
I don't see any mention in your statement about trying to convince other organizations about the value of AOT. This should be seen as possible prevention of hospitalization, rather than a restriction on the patient's freedom. For this reason we give financial support to the Treatment Advocacy Center.

Anonymous said...

There needs to be more internal investigation and reform within the Mental Health Care delivery systems from counseling services to temporary hospitalizations, to follow up housing and training programs, etc. The quality of delivery of services from counselors to Psychiatrists is open to neglect and can sometimes be much less "helpful" than damaging to patient s' progress and recovery. Also, if Medicare or Medicaid funds are involved, much better close attention should be paid to how decisions are made about paying providers of support services and hospitalization. There is currently ample opportunity to manufacture or alter paper work relative to patients' true conditions and what services are necessary and/or appropriate during hospitalizations, or in follow up programs and housing. There is too much neglect and waste quite often that can threaten the whole system for both honest care deliverers and patients needing ongoing, long term support.

Kay Omholt-Montague said...

Great debate and dialogue on this very HOT topic. As a former member of NAMI and as a person who has been diagnosed (since June of 1982) with a "major mental illness" I must say that I am disappointed in NAMI's position on AOT.

One of my main problems with AOT is that it forces people to receive so-called "treatment" (which could include medications, therapy, day treatment, etc.) while living in their own communities - without taking a good, hard, long look at the available "treatment" modalities - for effectiveness and attractiveness to individuals.

I find myself asking questions such as: 1) Does AOT require an individual to return to a "treatment" setting that has never worked before? 2) Does AOT require a person to take medication(s) that have caused him/her to have serious side effects (weight gain, sexual dysfunction, spikes in blood sugar levels, etc.) in the past? 3) Does AOT do everything it can to take the individual person's wishes into consideration?

Why are "we" spending so much time, energy and effort attempting to pass a bill that will FORCE people to "receive" so-called "treatment"(potentially violating their basic civil liberties) rather than looking at legislation that focuses on PREVENTION, PROACTIVE MEASURES and QUALITY OF LIFE ISSUES?

In my heart of hearts, I do not believe that most family members WANT to force their relatives to take a medication they don't like/want or to attend a treatment facility that they feel is doing them no good. I truly believe they would prefer a situation in which "involuntary treatment and forced medication" were NOT the only, seemingly, best available options!

We, as a society, have done a disastrous job of attending to the needs/desires of people who have challenging issues. Our knee-jerk responses to them, historically speaking, have done little to nothing to resolve their so-called "problems" in the long-run. We have chosen to "react" to them in ways that have actually made their problems worse - for them and for society, as a whole. We respond when the situation is at a crisis point - with everyone running around looking for the most effective and the cheapest "band-aid" to deal with the situation in the "heat of the moment".

To be sure, most family members have attempted to resolve their relative's challenging issues BEFORE it got to a crisis point. Tragically, our society tuned them out - often leaving them with no options but to "do the best you can" - and/or to "come back and see us when you have a REAL problem"!

So, let's not throw good money after bad money by promoting/advocating for legislation which is based out of fear and a feeling that "this is all there is". Instead, let's devise programs that address the needs/desires of people with "challenging issues" - that actually work, are cost effective and are attractive to individuals.

Then we can do away with the high-pitched shrieking and fighting over "to do or not to do" - and get down to the brass tacks of devising programs (and medications, yes please?) that aren't so awful we have to literally "shove them down peoples" throats - against their will!

Laura Pichette said...

The HIPPA laws definitely need to be revised for mental Illness, their chance for successful treatment depends on family involvement. When someone doesn't see their illness, or doesn't want to get help, they become dangerous to themselves and to others. It is very sad that our prisons and jails house so many with mental illness. With the proper medication and council they could live very productive life's.

Lawrence F. Golsen said...

NAMI should compose a letter to all members of Congress that states what NAMI wants in the final Bill.Next the letter should be designed so NAMI member can sign by filling their address and the e-mail to their respective representatives and senators. I have been doing a similar thing as a environmental advocate the Sierra Club ,Environmental Justice, NRDC. Lawrence F Golsen DDS

Anonymous said...

As a consumer member of a local Oregon NAMI who also supports a family member with mental illness, I must respectfully disagree with your enthusiasm for HB 1517 (Murphy). I have questioned in my own heart if I could even be part of an organization like NAMI if it gave its support to the Murphy bill. To me respect for the privacy of an individual's med:ical record is sacrosanct and must not be easily breached. I believe that this question and making possible an easier path to forced commitments by family and others threatens to undo the entire covenant to respect the civil rights of persons wrestling with mental illness. The forced imprisonment of my peers ironically comes in a bill shaped by a member of a party which has opposed the offering of healthcare and appropriate preventions of dangerous symptoms through the ACA, nicknamed by them "Obamacare." Why? They claimed it was a takeover of the medical system, a major part of the economy. Now they want others to take over the lives of people with mental illnesses. Isn't this a more serious breach of our constitutional rights? Or is slavery still okay? Eliminating parts of Murphy's Law (double entendre intended) is necessary, as is the rewriting of parts to avoid severe harm to individuals' lives and rights. I do want to dialogue with others, but the basic civil rights of my peers are not up for question. Murphy' Law has the unintended consequence of stigmatizing us all over again, while adding actual and potential harm. Many like Murphy somehow think that dealing with the mentally I'll is a road to overcoming much violence in society. That of course is a stigmatizing myth and should not be a foundation of any act of Congress.