An Opportunity for Comprehensive Mental Health Reform

JUN. 17, 2015

By Mary Giliberti, J.D.

Rep. Tim Murphy
Rep. Tim Murphy introducing the "Helping Families in Mental Health Crisis Act of 2015" to members
of Congress on June 10


Representatives Tim Murphy (R-Pa.) and Eddie Bernice Johnson (D-Texas) have introduced HR 2646, the "Helping Families in Mental Health Crisis Act of 2015." This introduction begins a legislative process toward mental health reform, which is long overdue. NAMI has submitted a letter of support to Representatives Murphy and Johnson indicating our appreciation of their leadership and our commitment to work with them to pass comprehensive mental health legislation. 

HR 2646 has many positive aspects, including provisions to improve integration of mental healthcare and physical healthcare in Medicaid, spur early intervention in the treatment of psychosis, improve the use of health information technology in mental health care and provide resources for suicide prevention. HR 2646 also contains provisions designed to improve data collection and outcomes measurement and expand the availability of evidence-based services. It contains provisions to remove discriminatory barriers to acute inpatient treatment in Medicaid and Medicare and it advances enforcement of the mental health insurance parity law as well.

HR 2646 also addresses issues that have generated much discussion within NAMI and other organizations, such as the Health Insurance Portability and Accountability Act (HIPAA) and access to information for caregivers, the role of the Substance Abuse and Mental Health Services Administration (SAMHSA), the Protection and Advocacy System and Assisted Outpatient Treatment (AOT).

We have carefully reviewed the bill and believe it takes a more thoughtful approach to these complex issues. However, we have heard from many of you and are very aware that there are strong, diverse opinions about these issues and some questions about the new provisions. For example, members and leaders have asked questions about the scope of the Protection and Advocacy systems’ jurisdiction under the new "abuse and neglect" standard and whether that includes advocacy for housing and recovery supports, which is an important question that we will seek to clarify as the bill moves forward.

Some of you know the process on Capitol Hill well, but for those who do not, here are next steps. The next stage of the legislative process is a mark-up in committee where the bill gets careful consideration and sometimes amendments are offered. Then, it would go to the floor of the House for a vote.

We also understand that Senators Chris Murphy (D-Conn.) and Bill Cassidy (R-La.) are working on a Senate version of the bill. It is not likely to be identical, but it will address many of the same issues to improve the mental health system for people with serious mental illness. The Senate will also need to carefully consider their bill in committee and then it would be voted on by the Senate. Often the next step is a Conference Committee to reconcile differences between the House and Senate versions of legislation before it goes to both Houses for a final vote. Although it may seem like a long process, NAMI is very hopeful regarding legislative action given that the efforts in both Houses are bipartisan.

This year, we have an unprecedented opportunity to pass legislation to improve mental health services. It is very important that NAMI is at the table as this process ensues. We look forward to continuing our dialogue together because NAMI, more than any other organization, understands that the status quo is unacceptable and needs to change. As the bills work their way through this process, we would like to continue hearing from all of you. If you have thoughts about the bill or mental health reform in general, please email us at I can’t promise you we will have the time to respond to each email but I can promise you that we will read and consider every one carefully.

The hallmark of NAMI is an inclusive community of individuals, families and friends whose lives have been changed by the experience of mental illness. These experiences make us very passionate about these issues. Passion will be important because we will not get mental health reform without it. But passion cannot get in the way of respectful dialogue, understanding and listening to the perspectives of others. Only by talking together and reviewing information with an open mind and in recognition of the ongoing process will we achieve reform that promotes recovery and wellness for all people with mental illness, including those with the most serious conditions.

It is unlikely that all NAMI supporters will agree with all provisions or all changes that have been made to the bill already and those that may be made in the future. But hopefully, we all can get behind the need for comprehensive reform and by working and talking together, we can achieve final legislation that will significantly improve lives.

Before Congressman Murphy focused on these issues, there was little discussion in Congress. Now there is momentum and bipartisan support. NAMI will continue to listen to our members and leaders as the legislative process continues and we will tirelessly work for a better system for those affected by mental illness. We will also continue to communicate regularly with you about the bill and the issues it addresses.

Thank you for your leadership and advocacy!


JUL, 05, 2016 02:15:19 PM
A pat of me is willing to support any bill that raises money and appoints a new Assistant Secretary to handle such things as integration of physical and behavioral health, etc. Yjere is no question that this country needs serious, radical reform in dealing with mental health care and how we think about mental illness.

But we deserve much better than this bill. This bill strips autonomy for the victim suffering from mental illness, in spite of the fact that psychiatry is moving towards more patient-centric approach and a partnership paradigm. This bill will just add layers and layers of new paperwork and red tape.

The bill promises to add more beds, psychiatrists and social workers, which is all good, especially in rural areas, but then threatens to have assisted outpatient facilities (whatever that means) which sounds horrible. This is going in the wrong direction. What is needed are recovery outpatient programs that are completely interdisciplinary, i.e. ones that offer everything form therapy, med management, yoga and art, to help a patient heal and reintergrate into culture and create a life.

I'm very weary of losing privacy controls. As some know (and some remain in total denial of), family is usually part of the problem with mental illness. It's imperative that they are not the sol source of caregiving for someone struggling with a mental illness. The law exists to protect the mentally ill victim from the family as well.

We deserve a much better reform bill than this. I'm going to oppose.

FEB, 05, 2016 01:11:14 AM
Ellie Stabeck
I read through the posts and am very interested in understanding, from all those folks who oppose HR 2646 based on infringement of their privacy rights and the forced treatment provisions, what in their estimate would be the way to help those with severe mental illness become stable, and avoid life on the streets and drug abuse, if they refuse treatment, are unable to work, are highly disconnected from reality, living in constant fear, unable to care for themselves and often stop eating. Sometimes under these conditions they commit suicide, homicide or matricide. Please let me know your suggestions for helping such people, keeping in mind not everyone experiences mental illness in the same way, and the unfortunate fact that the medication model is a very poor one but the only one we have now.
Share with us what would work in your estimate. I do think there is a better more human way to help people stricken with a brain illness through no fault of their own - long term rehabilitation for brains to re-circuit themselves through one to one mentoring, occupational and vocational rehab and various therapies including unfortunately medication, but the costs are very high and society is more concerned about safety than treatment. Not sure it is willing to commit to funding high costs for seamless treatment from diagnosis to recovery.. unless enough voices are heard that demand it.

JAN, 31, 2016 12:52:22 AM
Teri Scott
I support this bill 100%. My adult son is bipolar/schizoaffective. I am involved and supportive in his program UNTIL he stops his meds. Then he removes me so I won't be able to talk with his doctors and counselors. When he needs me the most, I am powerless to help. This bill will be a huge help to families and severely mentally ill patients:

DEC, 05, 2015 12:58:52 PM
Alice Rogers-Pearlman
I support this bill. I feel that my son might still be alive today if such reforms had been in place. Nothing is more frustrating than watching your loved one deteriorate and not being legally able to get him/her help until their life is totally out of control.

NOV, 29, 2015 11:31:32 AM
Kay Washko
Since my initial post in June 2015, the unthinkable has happened. My son, who has been struggling with inherited schizophrenia and schizoaffective disorder for the past several years, gained access to an illegal weapon and in a delusional state of mind, shot a man to death two weeks ago. His brain disease was allowed to go untreated for far too long due to the existing laws which tied our hands from helping him. Although he was under outpatient treatment, his illness apparently had progressed to a critical point and his cognitive disruptions were simply too much for him to overcome. It is this shattering and senseless tragedy and others like it in the news every day which points most clearly to a need for comprehensive mental health laws. We need laws which also take into consideration the observations and concerns of family members who want only to support and help their loved ones in initiating and maintaining treatment for serious mental illness, as they would with any other bodily illness. My son will likely spend the rest of his life in prison after he is stabilized. This is not justice. He will be further punished for having an illness he did not choose, an illness which has tortured and punished him (and us) enough for a lifetime. Yes, people are free to decline treatment for mental illness, cancer or any other condition. Yet if a person had a compound fracture of their leg and refused treatment, I'm fairly certain they would be forcibly treated regardless of their wishes, for humane considerations would prevail. Not so with severe mental illness. Mental illness is the only condition where the person is allowed to deteriorate in the name of 'free will' and then are further punished by society when the illness becomes extreme and results in delusional and deadly actions.

NOV, 17, 2015 10:03:05 PM
David Robbins
This is all about control and given the history of governments abusing psychology to silence dissidents I think this should be approached with very very cautious hands . As a person who has suffered as a child because I was abused I was further abused in the places I was supposed to be getting " help " . I was just a child though . Being beaten and molested will really screw a child up . When you get older you learn to avoid these people that abuse you . Usually they get mad when you tell them that they are abusing you and blame you for them abusing you . It's disgusting . Personally I'm just sick of abusers getting away with abuse it's old already . If it helps with access then ok but trying to force people into treatment is about control . I could go on and on about my disdain for psychology but I will save it for some other time .

OCT, 27, 2015 10:51:35 PM
I guess i, as someone who would likely be considered to have a severe mental illness, am torn about this bill. Yes, i want it to be easier to get in to see a paychiatrist and get the help i need. But...i am definitely not in favor of the idea of being forced into outpatient treatment if i don't want it, or, in inpatient care for that matter. Because of the risk this all brings to my personal freedom, i am currently rethinking beginning to seek help with a psychiatrist purely to avoid a label that could get me stuck in a system i don't want to be in.

And that is why this is wrong. Because those of us who might want help, will be scared off by the idea of not being able to get back out of the system once they're in. So i do not support this at all.

AUG, 13, 2015 07:20:28 PM
I have reviewed many of the current bills in congress including the Murphy bill , senator Bill Cassidy's bill s.1945, senator John Cronyn's bill s.2002 and many other proposed mental health bills and although they are far from everyone's liking, I am encouraged to see this nation's elected representatives attempt to make overdue changes in how we approach and treat for what I call brain disorders.
I believe foremost in protecting the rights of individuals, treating everyone with due respect, dignity and allowing any individual the right to pursue free choice in their daily lives. However; there are occasions where an immediate loved one, a close acquaintance, or a trained medical professional must act and make difficult decisions for someone whose welfare is progressively becoming more mentally degraded or are experiencing a full blown mental health melt down and needs immediate assistance without their consent.
I have several family members, immediate and related that all have suffered from some form of brain disorders. I have experienced their episodes directly, ranging from minor events to full blown involuntary hospitalizations. I have seen misdiagnosis of condition, improper and insufficient treatments, I have heard therapists tell them to reduce their medications and heard recommendations to use full blown holistic approaches as well. There have been 72 hour holds and releases only to end up in something far worse. I feel a need for a nation wide acceptance for a "Kendra's Law" {compelled treatment} which has proven effective for preventing repeat episodes and reducing costs by half for mental health treatment.
I realize there is considerable resistance to the above mentioned bills from the camps believing they would result in infringement of personal rights and limitation of choice. I can sympathize with their thoughts and beliefs if not handled correctly. However, based on choice, I would rather temporarily and discretely see to a loved ones immediate treatment than to let the situation deteriorate further and become far more challenging to treat and stabilize the individual.
Regarding treatment access for anyone in need, America has to this point turned it's head and closed it's eyes. The nation has closed mental health facilities, reduced the number of available beds in institutions for treating mental illness disorders and continue to reduce services for these individuals as well. We have failed to encourage our new medical professionals to become modern psychiatrists,psychologists, and therapists. We face chronic shortages of necessary funding for medications and properly compensation our present number of medical professionals. Where are we now? We have loaded up our jails, our prisons with citizens of this proud nation requiring treatment and support, in fact we currently have TEN times more incarcerated than in mental hospitals. America witnesses horrible life taking events and we ask the same questions"why did this happen", and "what can we do to prevent it from happening again".
Prevention is key. How? Funding is a key component. Encourage new research for treatment including new pharmaceuticals, cultivating interest for more medical professionals in all related fields, encouraging individuals to become fully engaged with their patients in treating and receiving treatment. Stop the closer of clinics, expand the number of available beds in mental illness treatment hospitals. Reopen closed walk in clinics and educate the general public as to where these centers are located to help those in need and empower them to seek treatment. Reduce the stigma of mental illness and alleviate the inner fears of those who are hesitant in seeking treatment { so many are afraid of incarceration}. In addition allow walk in clinics access, in some form, to aid an individual to get emergency refill {limited quantity}prescribed medications if they are passing through or unable to get a refill at a pharmacy for a legitimate reason.

AUG, 06, 2015 12:26:04 AM
To Lin Lewis: You don't want a Mad person's health care to be between themselves and their clinicians. You want it to be between the Mad person, their clinicians, and their family. Mad people don't want this and regardless of what Congress decides, we will not participate in a health care system that robs us of our rights to keep our medical information private, be protected from illegal seizure, and maintain control over our minds and bodies.

To Kimberly Blaker:

Anosognosia is a red herring. At best, it's solid proof that the mental health system should have no power of any kind over the could-have-been consumers because the system chose to let the health of these people deteriorate when it failed to do its job of showing the consumers how they could have improved their lives with the services that the mental health system had to offer them. At worst, it's not a symptom at all; instead, it's a construct of social control that was cooked up by psychiatrists, politicians, shareholders of the Pharma companies, and the "families of the mentally ill" who teamed up to create an ideology that could successfully exculpate them from formal and informal punishments for unjustly obtaining their various economic and social advantages by committing the barbarous act of forcibly drugging marginalized people.

AUG, 01, 2015 08:59:02 PM
Lin Lewis
Law making process is length by politicians, while medical decisions are between persons(s) and their physicians. It has taken many years to start the conversation on Mental Illness, quality care and parity. Let's think about why Mental Health Care is treated separately? Why new drugs are not invented to treat mental health conditions? Is mental illness a disability? We need to treat mental illness like any other. Let's start the conversation by coming out the "closet" to discuss mental illness and seek solutions openly and frankly with passion! Yes, I support H. R. 2646.

JUL, 28, 2015 10:51:30 PM
Kimberly Blaker
I hope that NAMI will support those with serious mental illness who are the most under served by fully supporting HR2646, particularly as it relates to HIPPA and AOT. My son has schizoaffective disorder and is severely disabled as a result. HIPPA has made it difficult to know what is going on with his treatment. Because of his anognosia, AOT has been the only way to get him on treatment. However, in moving to another state, AOT has been nearly impossible where it is rarely used. As a result, his condition has significantly deteriorated over the past year. Those with SMI should be a priority rather than swept under the rug (or more accurately, into the street).

JUL, 15, 2015 01:36:19 AM
John Hallowitz
Thanks J for pointing out that my original post could have been clearer. To be perfectly clear, I am a strong supporter of this bill. What I was trying to bring out in my original post was how NAMI was claiming to support the author's of the bill, yet it was qualifying that support and doing nothing (and still isn't as far as I can see) to build any support for the bill's passage. This seems to be a deliberate strategy which I can only suppose is aimed at trying to appease both sides of this debate. I think this discussion thread shows that if appeasement was the goal, that strategy is not yet working.

JUL, 14, 2015 10:29:19 PM
Justice Ginsburg
"This Court emphasises that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings" 1999 Supreme Court Olmstead Decision

JUL, 06, 2015 04:49:01 PM
Perpetuating the myth that there must continue to be high rates of the "severely mentally ill" whose sole treatment must be tranquilization basically. You know....the ones not functional enough due to outdated treatment to even comment or have voices anymore is a sad state of affairs indeed. I cannot support the closed minds behind this bill. Look at Finlands dialogue....... I want to see this kind of comprehensive reform. Less medication and short term when absolutely neccessary.......learning how to best support and minimize withdrawal. And for the Love of humanity......please stop medicating children with this horribly brain and body changing stuff. Kind programs not false facts and myths please.

JUL, 06, 2015 02:50:25 AM
Take heed NAMI. At the time of this post, the proponents of and opponents of Murphy's Monstrosity on this comments page are:

For: Thomas Spurlock, Marlena Morton, Mary Ellen Jones, Edward A. Olenic, Courtnea, Diana Joyner, Lee Reeder, Madeline Kelley-Schwock, Mark Dryden, DJ Jaffe, Prefer Anonymous This Time, Ilene F. Wells, Caroline Ehrlich, LouAnn Bieck, Michael Ballard, Jan Winter, Ellen Chiswell, Dena Charvat, David Hamilton, Kay Washko, Cathy Rospotynski, Randy Conyers, Bob Nassauer

Against: Amy Lyne, J, Mark Jacques, Elissa Knich, Leslie

Not Sure: Larry DeAngelo, John Hallowitz

Out of the people in favor of this bill, at least 12 of them (Kay, Dena, Ellen, LouAnn, Courtnea, Caroline, Ilene, "Prefer", Madeline, Diana, Mary Ellen, and Thomas) are family members or close friends of Mad people who, by wanting to repeal the legal safeguards for their rights to privacy and bodily autonomy, are very likely to have a long history of abusing and discriminating against their Mad relatives and friends, if their support of this bill is an example of the ways in which they usually interact with them. The Mad people who support this bill (Randy, Cathy, Michael, Mark, and Marlena) could set up a pro-force psychiatric system for themselves without eliminating the right of Mad people to a psychiatric system that is pro-choice. To achieve this, the legalization of Ulysses Aggreements would provide a legal, humane, flexible, individualized, and affordable way for people to ensure that their medical needs are met when they cannot speak and act for themselves. No one who won't suffer the physical, emotional, and social damage that results from being an inpatient or an outpatient inmate of the mental "health" system should be able to inflict the damage that results from these deprivations of liberty on anyone under any circumstances except those that are the most imminently threatening to human life or safety. It needs to be EXCEEDINGLY difficult for friends and family members to drug up, shock up, or lock up each other.

JUL, 01, 2015 08:30:11 AM
Bob Nassauer
We must support passage of this bill. Even though it will contain imperfections it is the only way things will start to improve. This is a watershed moment.

JUN, 30, 2015 10:15:18 PM
Randy Conyers
On 2646, my belief is that of Mary Giliberti and the NAMI National Office. I have been “hands on” with 2646 and the prior bill 3717. After many pro/con conversations with NAMI members, it must be clearly realized the bill has a priority with those people classified as having a Severe Mental Illness, SMI. Others who have a mental health diagnosis are considered secondary. Functioning consumers are confused by the bill. It is not specific to this population. Those who have a severe mental illness most likely won’t be reading or making comment on 2646, but are the ones where their families need help the most. It wasn’t until the past 60 days did SAMHSA make a distinction between people who have a severe mental illness and those people who have a mental health diagnosis. I have the manic/depressive Bipolar disorder, yet with medication I can function in many ways. I understand that some of my peer’s lives are so severe their needs come before mine.

JUN, 30, 2015 08:36:25 PM
Cathy Rospotynski
As a person with a mental illness for most of my life it is encouraging to see action being taken to help people like me. I found NAMI when I was first diagnosed and volunteered for a few years when I was not working. It really helped me have a place to go and learn about my illness and the system. I became involved in our counties mental health board and served as the President of a group for members with an illness that were advocates as well. I look forward to hearing more on this bill.

JUN, 29, 2015 11:20:23 AM
Larry DeAngelo
This posting has upset many people in recovery throughout NAMI. One has to read this very carefully not to conclude that the posting is a blanket endorsement of the HR 2646 in its present form. The process of NAMI (our national organization) establishing a NAMI position on legislation is not very well defined and certainly not visible to NAMI Affiliates.

I would ask Ms Gilberti to work harder to reach out to NAMI State organizations and Affiliates and find common ground. NAMI postings and releases should be crystal clear on what parts of the legislation we support and what parts we want changed.

Larry DeAngelo
President, NAMI MetroWest

JUN, 29, 2015 08:33:36 AM
Kay Washko
My son is currently in a voluntary assisted outpatient treatment, but it has taken him 4 years to get there, as well as an initial involuntary 302 commitment. These have been difficult years, watching him deteriorate with our hands tied to help. Our whole family lived in fear and anxiety, knowing that society is not kind to people with severe mental illness and that one mis-step might end with homelessness or jail for our loved one. It shouldn't have to be this hard!! I am in support of any legislation which addresses and supports the needs of the mental health community. Social workers and practitioners in this field are stretched so very thin yet try to do their best. It is truly a heartbreaking scenario where any small bit of progress must be celebrated as a victory!

JUN, 28, 2015 01:01:38 PM
David Hamilton
I support ......

JUN, 28, 2015 11:13:58 AM
Dena Charvat
I would certainly support a Mandatory Outpatient Treatment option. My son has been living with me for the past three years. During this time I have realized that he has Schizophrenia. He refuses to get a job, refuses to apply for Social Security, overeats continuously, refuses to clean up after himself, is surly and abusive, and refuses to leave my home. I feel like a prisoner in my own home, but cannot bring myself to evict him-yet. Options?

JUN, 26, 2015 04:52:43 AM
ellen chiswell
I have a very close friend with a serious mental health issue. She had been well for about 30 years but a change in her mdication due to kidney issues sent her into a severe depression and psychosis. It is impossible to get any help unless she becomes a threat to herself and others. It is so sad to watch this happen and your hands are tied. At best , she would only get a 72 hour hold and is skilled enough with the system to get through that. No parity and hippa resttictions prevent any intervention until she does something serious enough. The jails have become our new mental health facilities.

JUN, 25, 2015 10:57:07 PM
Elissa Kinch
I am appalled that NAMI did not even mention in its letter to the sponsors the irresponsibility of limiting PAIMI organizations. PAIMI organizations are essential partners in protecting mentally ill individuals from discrimination. As the only real spokespeople for many with mental illnesses, they should NOT be prohibited in speaking to legislators or anyone else. This bill also exempts AOT from the scrutiny it deserves and prohibits PAIMI organizations from representing the wishes of their clients if their "caregiver" disagrees with them. I am ashamed of NAMI for writing this letter.

JUN, 25, 2015 05:38:02 PM
Jan Winter
I support this effort to bring SAMSA into line with evidence-based practices and increased focus on services for the most severely ill among us who can't speak for themselves.

JUN, 25, 2015 04:20:35 PM
Michael Ballard
As someone that has personally dealt with mental health issues for most of my adult life, it is refreshing to at least be talking about mental health reform. For years it seems like the only news I have received about any kind of reform has been to reduce or remove programs which are actually helping people like me. If it were not for some of these programs I doubt seriously I would be here today. I look forward to learning more about this bill and doing what I can do to help promote it. Please continue to keep us informed about the bill and if anyone has suggestions on what I could do to help please write. Thanks Mike

JUN, 25, 2015 02:41:57 PM
LouAnn Bieck
I have also been involved with several loved ones/immediate family and we now have lost my 40 yr old son. I do believe with the correct help & programs his life could have been saved. I once heard a wise parent say-"the beginning of Wisdom is calling things by their right name..." Only in this will we truly be able to identify and help those who are forced to try to survive in this world without proper medical care and support. .We never give up. I support Tim Murphy's bill also. Thank you-Mother & Mental Health Advocate

JUN, 25, 2015 02:05:23 PM
Caroline Ehrlich
I am very supportive of the need for this comprehensive bill, particularly AOT. While I totally support the parity part, most or at least many of the mental health recipients are on Medicaid and Medicare through their SSI and SSDI benefits, and my hope is these programs stay strong with no cuts. Without access to Medicaid and/or Medicare, more mental health beds in hospitals, more mental health rehabilitation facilities, accessibility to food stamps, and subsidized housing, the future of many of our mentally ill loved ones will be dim. I have a son who has been in the California mental health system for almost a dozen years and he has been able to get the treatment he needed under California's MHSA programs.

JUN, 25, 2015 10:22:26 AM
Marc Jacques
New bill would counter key values and provisions of the Americans with Disabilities Act
June 16, 2015 (Washington, DC) – The House Energy and Commerce Committee held a hearing today on the Helping Families in Mental Health Crisis Act of 2015 (H.R. 2646), introduced on June 4 by Reps. Tim Murphy (R-PA) and Eddie Bernice Johnson (D-TX). Groups across the disability and civil rights communities were deeply opposed to the 2013 version of the bill, which had numerous controversial provisions that would negatively impact the civil and privacy rights of persons with psychiatric disabilities. The new bill includes few changes to those concerning provisions.
“We couldn’t agree more with Reps. Murphy and Johnson that the nation’s mental health system is broken,” said President and CEO Robert Bernstein. “However, the Americans with Disabilities Act (ADA) and the Supreme Court’s decision in Olmstead v. LC have been important drivers of positive change, creating responsive, accessible community-based services that reduce mental health crises resulting in hospitalizations, police involvement or incarceration. H.R. 2646 not only fails to build upon these precedents, but in many ways it takes us in the wrong direction.” Bernstein said.
The bill continues to promote institutional and coercive approaches to inpatient and outpatient treatment instead of investment in effective community-based mental health services. It would also eliminate or drastically cut millions of dollars from important programs overseen by the Substance Abuse and Mental Health Services Administration (SAMHSA).
“We already know what works,” said Jennifer Mathis, Deputy Legal Director. “Proven programs such as supportive housing, Assertive Community Treatment (ACT), peer support, mobile crisis services, and supported employment have extremely successful outcomes, including for people with the most significant mental health needs. The problem is that these services are not widely available to people who need them. This bill would make it even more difficult to take these services to scale, as it would invest mental health dollars elsewhere,” Mathis said.
The bill makes discriminatory changes to the Health Insurance Portability and Accountability Act (HIPAA), reducing the privacy rights of individuals with mental illnesses and discouraging them from seeking treatment.

The bill would also eliminate much of the critical work that the Protection and Advocacy for Individuals with Mental Illness (PAIMI) program does. Protection and Advocacy (P & A) agencies have been responsible for significant improvements in mental health systems across the country. H.R. 2646 would strip them of most of their authority. The bill would prohibit the PAIMI program from providing advocacy and legal representation to help people with mental illness with a host of important issues, including housing, employment, education, community living, Medicaid benefits. Advocacy concerning anything other than abuse and neglect would be barred.
“As we near the 25th anniversary of the ADA, we urge Congress to reaffirm the ADA’s goal of providing people with psychiatric disabilities access to responsive, effective services in the community and to reject any legislation that would undermine that goal, ” said Alison Barkoff, Director of Advocacy.

This current bill does not include the 85% cut to PAIMI program funding or the "no unauthorized program" language found in the last version of the bill. However, it does include program activity restrictions and other provisions that would eliminate and overly restrict a lot of the work done by our nations P&As. These restrictions include:
Restricting the PAIMI program to only provide advocacy in situations of abuse and neglect;

Barring PAIMI advocates from raising concerns with decisions made by doctors, families, or guardians of people with mental illness;

Requiring the PAIMI program to ensure that caregivers (undefined) have access to the protected health information of an individual with a psychiatric disability; 

Creating a new grievance procedure on top of the current grievance procedure that is mandated by existing statute; and

Prohibiting PAIMI recipient agencies from using any funds, even private donations, for lobbying activities.

The national network of Protection & Advocacy (P&A) organizations have been assisting children and adults with psychiatric disabilities and their families since 1986 under the PAIMI program, to prevent abuse and neglect, ensure access to the services and supports, and protect civil and human rights. Government rating systems like the Program Assessment Rating Tool (PART), and independent studies, e.g. from the Human Services Research Institute, have found the PAIMI program to be effective and having a major impact on protecting the rights of persons with disabilities.

My State's P&A - Disability Rights North Carolina has operated as North Carolina’s P&A since 2007; it was previously known as Carolina Legal Assistance, which had a long history as an independent, private non-profit disability law project advocating for people with mental disabilities in North Carolina.

In 2014, Disability Rights organizations used PAIMI funding to:

Review reports of individuals who died while residing in state-operated or state-licensed facilities;

Investigate allegations of abuse, neglect, and/or death in state-operated or state-licensed facilities;

Provide advocacy and/or self-advocacy assistance regarding the right to be free from abuse and neglect to 151 individuals residing in state-operated or state-licensed facilities;

Provide technical assistance on mental health issue to non-clients (i.e. agency personnel, family members, advocates);

Represent or provide self-advocacy assistance to individuals with mental illness regarding access to housing, education, employment, and the community.

In addition, Protection and Advocacy Organizations used the knowledge gained through its work under the PAIMI grant to help elected and appointed officials to understand the rights of people with mental illness.

If the restrictions proposed by this legislation are enacted, protection and advocacy organizations like Disability Rights North Carolina would not be able to work towards positive outcomes like advising and representing individuals in matters related to discrimination in employment, higher education, or housing.

JUN, 25, 2015 12:06:44 AM
Ilene F Wells
I am very pleased that NAMI is supporting HR2646, the Helping Families in Mental Health Crisis Act. This is a big step forward, to improve the treatment for the most seriously ill, whose needs have been ignored for too long.

Murphy's bill would open a pathway to ensure the 4% who are the most seriously ill, are not keot at the back of the line for treatment. As we see in the headlines, that only leads to homelessness, incarceration and death.

That is a price too high for our society to pay.

Thank you

Ilene Flannery Wells

JUN, 24, 2015 11:38:16 PM
Will the person with mental illness have privacy or will family get involved with a treatment plan without their consent

JUN, 24, 2015 09:45:04 PM
Prefer anonymous this time
I support the bill 100%. I also expect NAMI to put everything it has into pushing it forward as it currently stands: pro-AOT, pro-HIPAA clarifications, etc. Families have got to be free from the legal hurdles so they can get their loved ones care when they are too ill to choose it for themselves (i.e., psychosis).

It is absolute malpractice and disgrace that I cannot intervene on my relative's behalf when he is psychotic, and yet, psychosis destroys cognitive brain function. Not treating psychosis is akin to standing by and doing nothing when someone has a heart attack or stroke. How can we let this go on?!?!?!

JUN, 24, 2015 09:10:10 PM
DJ Jaffe
I strongly support the NAMI Policy on Involuntary and Court Ordered Treatment which endorses the use of AOT. NAMI's Official Policy is at . This is the only NAMI policy put to a vote of the entire membership and after that, the NAMI Board. It was supported by both overwhelmingly. NAMI should support the will of its members and indicate it supports the Assisted Outpatient Treatment provisions of the Helping Families in Mental Health Crisis Act as they further the NAMI Policy

JUN, 24, 2015 07:56:31 PM
mark dryden
This law really does need to implemented. I have had had helthcare people in physical care make fun of me for having bipolar disorder

JUN, 24, 2015 05:10:20 PM
amy lyne
Maybe if psychiatry and hospitals were not abusive we wouldn't need to criminalize mental illness to get people to go.

Be real, people avoid the hospital for a reason.

Why do we never talk about the abuses behind psychiatry's closed and locked doors ?

JUN, 24, 2015 03:18:53 PM
John Hallowitz
When will there be an action alert asking members and supporters to contact their Senators and Representatives in support of this critical legislation? Words of support for leadership without supporting what that leadership is doing are meaningless at best and disingenuous at worst. Exactly what is the deal breaker? Mixed messages like the above are not productive. "We support this legislation, but we don't support this legislation." "We thank you for your leadership, but no thanks for your leadership." What kind of "chop logic" is this? Leading means being out in front on issues and showing the way forward. When divisive issues come up, we should try to resolve differences, but that can only be done when individuals and organizations take clear stands.

JUN, 23, 2015 09:46:38 PM
Consumers and survivors of mainstream and pro-force psychiatry do NOT support this bill. Mad in America has a petition that people can sign, anonymously if they so choose, in opposition to this bill. ( NAMI needs to change its name to "National Alliance of the Former Family Members of Mad People or "NAFFMMP". This organization was founded by the "former family members" of Mad people to further their sanist agendas at the expense of their former relative's civil rights. Apparently, that's NAMI's goal despite the fact that it extends token membership to a handful of Mad people. I will never return to the mental health systems for care if Murphy's Monstrosity becomes law. Force and coercion make recovery from any illness impossible.

JUN, 20, 2015 04:44:26 PM
amy lyne
Forced drugging "take these pills that make you feel sick tired and bored with life or get assaulted and raped with a needle" is a violation of human rights.

Wow being accused of mental illness in the USA will get even better.

If NAMI truly is the voice of the mentally ill they will oppose this bill.

JUN, 20, 2015 03:41:49 PM
madeline kelley-schwoch
My family receives treatment from Veterans. As a family to family teacher and trainer I hear such sad stories of how broken our system of mental health treatment in Texas is. I hope this legislation will help improve our treatment and on going support for those families who struggle to get help for their family members.

JUN, 19, 2015 11:23:57 PM
Lee Reeder
This is an important bill guys especially after the shootings in Charleston, SC last night as we need a total overhaul of the mental health system in this country. Certain states as well need it especially Illinois with what Bruce Rauner is trying to do & I hope this bill passes ASAP

JUN, 19, 2015 08:24:47 PM
Diana Joyner
I also had a family member with mental illness. My sister died last year from suicide as a result of Bi-polar disorder. She may not have died if there had been adequate care available. I am strongly supportive of this bill. I would be willing to offer my story if needed to support passage.

JUN, 19, 2015 08:20:44 PM
New York state is sadly lacking in care for the mentally I'll. I am mentally ill and receiving care and I am fairly well managed. I have an adult son who is not being managed, and I have struggled for three years to get him the care he needs. he has Medicaid, since he never had insurance when he was working, and now he cannot work, we are fighting to get him disability for not only bi polar mental illness but a long term disability with a work related back injury. We deerate to get him the help he needs ( but feels guilty to ask for) and I fear my demise before he gets settled. I also have a daughter with a traumatic brain injury, who is also disabled and unable to get disability for her ailments. Any all help would be appreciated.

JUN, 18, 2015 05:13:11 PM
Edward A Olenic
I support the bill. Thank you for your advocacy.

JUN, 18, 2015 04:01:37 PM
Mary Ellen Jones
I also support HR 2646 and expect NAMI to do likewise. As the parent of a person with severe mental illness, I have experienced the frustration of HIPPA and the benefits of AOT (court-ordered outpatient treatment here in Oklahoma).

JUN, 18, 2015 02:48:58 PM
Marlena Morton
As a person with schizoaffective disorder I support provisions to make it easier for my family to force me into the hospital if they think I need to go. Does the bill assist in this effort?

JUN, 18, 2015 11:39:39 AM
Thomas Spurlock
I feel this bill is the most comprehensive bill I have seen in the last 25 years I have been involved with a loved on with a severe mental illness. The Assisted Outpatient Treatment portion of the bill, know as Mandatory Outpatient Treatment in Virginia, has helped my love one get back into society when nothing tried in the past has even come close to helping him. I support Tim Murphy's bill and would expect NAMI to whole heartedly support the bill also.

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