Friday, August 29, 2014

Technology as a Tool for Recovery—A Promising Practice

Millions of Americans face the day-to-day reality of living with a mental illness. Mental illness affects everyone—our communities, our families and ourselves. Access to help, treatment and services for those in need can be a challenge, and the impact of systems and treatment failures—homelessness, cycles of hospitalization, jail, failed relationships—affect many.

And yet, amid the failures are stories of success. In many communities, we see innovative solutions emerging that offer hope while providing effective approaches that truly improve lives.

Many people with mental illness do not have access to integrated primary health care. Despite the fact that people with mental illness often have other health challenges, including heart disease and diabetes, too often health care providers are not equipped to address all of their health care needs. And, if left untreated, this may result in additional struggles for the individuals, too often resulting in the use of other more expensive, downstream services including emergency departments and crisis services.

In Massachusetts, one local approach to solving this challenge stands as a pillar, as a promising practice. Through the creative use of technology, community health care provider Vinfin, along with Dartmouth Medical School and other community health providers, embarked on an effort to study the use of a small personal technology device, The Health Buddy, to help individuals manage their physical and mental health needs on a daily basis.

"Although it does not fix everything for me, I am walking more than I used to, I am more active and it has helped me get through my day better."

“The Health Buddy helps me and my case manager stay connected,” said John, a gentleman with a mental illness who has been using the personal technology device to help him manage his mental and physical health care. “It helps monitor health and feeling and helps me manage my medications. It also helps me manage how to eat and when to eat to be healthier.”

A small hand-held device with four buttons and a display screen, the Health Buddy, along with a related systems study, aims to teach individuals with serious mental illness, like John, how to help manage their chronic medical conditions and access care sooner while avoiding more severe complications.

In John’s case, the technology helps him keep track of his health experiences and also alerts his treatment team. If he records information that alerts a concern, they are notified sooner and can reach out to check in to address any problems before they may escalate. If John needs something special, he can also alert his case management team ahead of time so they can talk about it, a relief to John who previously may have had to wait for an appointment to register an issue.

“I think this technology is a good idea,” John shared. “I get to communicate every day, not just when I have an appointment. It serves as a reminder about my diabetes and mental health condition by asking me ‘How do you feel today?’ and then also gives me new information that is helpful for me in understanding how to be healthier.”

In addition to helping John better manage his various health conditions, it has helped him stay connected, personally, and has helped him be more independent. He visits to the emergency department have rapidly decreased as he has learned to become his own health care advocate, and his relationships with his wife and sister have improved.

“I think this is a good idea” John said. “Although it does not fix everything for me, I am walking more than I used to, I am more active and it has helped me get through my day better.” A promising practice indeed.

Together with the National Council for Behavioral Health (National Council) and Otsuka America Pharmaceutical, Inc. and Lundbeck, NAMI affirms the need for localized, innovative, effective and sustainable approaches to address serious mental illness. Through Connect 4 Mental Health® (C4MH),a nationwide initiative, we have joined together to call for communities to prioritize serious mental illness and encourage promising practices that help people, like John, live healthier, fuller lives. 

Learn more about the C4MH initiative and the Community Innovation Awards program which, through four $10,000 grants, will strive to recognize additional organizations across the country that are exhibiting innovative approaches to serious mental illness in their communities.

Wednesday, August 27, 2014

Criminalization of Mental Illness: It’s a Crime

By Mary Giliberti, NAMI Executive Director

Today, 1 in 5 people in jails and prisons in this country live with a mental illness. About 70 percent of youth in the juvenile justice system have a mental health condition. This criminalization of mental illness is tragic and it’s wrong.

Instead of getting people with mental illness the treatment and support they need, our society too often puts them in jails or prisons, which are the worst places for recovery.

News reports almost routinely revealed cases that should shock the conscience of Americans. In California, the state was forced to adopt detailed regulations after videotapes became public showing prison inmates with mentally illness being doused with pepper spray and violently removed from cells.

Solitary Watch, an advocacy group that focuses on solitary confinement issues in general has begun to circulate videos to document the brutal treatment of inmates with mental illness.

Two years ago, NAMI warned the U.S. Senate that putting people with severe psychiatric symptoms in solitary confinement is like pouring gasoline on a fire. It only intensifies symptoms. Today, a NAMI fact sheet on solitary confinement is being used to influence policymakers as part of the reform movement.

NAMI has worked for years to expand Crisis Intervention Teams (CIT) training for police for compassionate responses to people experiencing psychiatric crises. At a Senate hearing this year, NAMI called on the federal government to vigorously promote CIT nationwide.

At NAMI’s National Convention, Sept. 4-7, in Washington, D.C., NAMI will honor Cook County Sheriff Tom Dart of Chicago, a national champion for CIT and other criminal justice reforms.  His staff recently gave me a tour of the Cook County Jail— which, sadly, is considered one of the largest “psychiatric hospitals” in the country.  

Although Sheriff Dart works tirelessly to provide treatment in the jail, it still was sickening to see such a large number of individuals with mental illness confined because they did not get the help they needed. I also had the privilege to visit a community-based center for individuals with mental illness in the same city that provided extensive peer support and a place for people to feel part of a community.  I was struck by the different outcomes for people with mental illness and how much rests on access to good services and supports and diversionary programs.

Besides honoring Sheriff Dart, NAMI’s convention will focus on a range of criminal justice issues. The convention program includes:

  • An “Ask a Cop” workshop.
  • A networking session on “Families and the Criminal Justice System.”
  • A major topic session is entitled “Treatment, Not Jail: Diverting Veterans from Incarceration into Mental Health and Substance Abuse Treatment.”

But criminalization is more than a policy topic. For many people, it can be an immediate, urgent crisis. Every month, NAMI’s national Helpline gets hundreds of telephone calls for legal help:

  • Individuals want to know whether it is safe to call 911 if they or someone they love is in crisis.
  • Families want to know what to do if a loved one has been taken away by police.
  • Families struggle to cope with having loved ones in prison, sometimes for years, and worry about whether they are getting the help they need.

What can you do to help? Send a message to Congress to pass the Mentally Ill Offender Treatment and Crime Reduction Act this year to support alternatives to incarceration for youth and adults with mental illness.

Click here to take action

If you need more information, please feel free to also contact the NAMI Helpline at 1-800-950-NAMI (6264). NAMI stands for help and hope. We welcome your support.

Wednesday, August 13, 2014

What We Can Do about Depression

By Ken Duckworth, NAMI Medical Director

I am one of many who would say that Robin Williams was among my favorite actors.  His portrayal of a psychologist in Good Will Hunting is my all-time favorite. A colleague of mine told me her kids said to her last night, “Mrs. Doubtfire is dead.” They were crushed by this news which seemed so unbelievable based on their experience of the character. He was a figure that transcended generations. It was a very sad day for many, and my heart goes out to his family, who will bear the incredible pain of his death long after the news cycle ends.

I recalled that he had a history of struggles, but I was still shocked to hear that he had died by suicide. He was a genius and had many supports. But of course depression doesn’t calculate those things. Severe depression distorts rational thinking and can lead to the fixed idea that hopelessness and pain are to be your experience forever. I have heard this from patients who have lived after suicide attempts. They told me they had lost all perspective and simply wanted to end their pain. They often reported simply losing a sense that they mattered to other people and forgot that they too were loved.

Depression distorts reality and causes a risk of death. It is a persistent and serious public health crisis that doesn’t get enough coverage. It can happen to anyone and is associated with a great deal of the suicides in our country. When combined with a substance use disorder it becomes even riskier and harder to treat, and when it is part of a bipolar disorder it requires extra attention. Other public health problems like heart disease have seen great results in the past several decades—we cannot say the same about suicide.

What can we do about this public health crisis that takes so many from us?

  • Advocate. Fight for better treatments and for research into the underlying causes of psychiatric illnesses.
  • Be proactive. Work to be sure that people get screened for this depression and that help happens earlier. National Depression Screening Day is October 9.
  • Get medical. Get checked for medical causes of depression like thyroid disease.
  • Take the long view. We can encourage people to stay with treatments as some do work even after others have failed. That is well established from the STAR*D study by NIMH.
  • Integrate. Co-occurring disorders (like depression and substance use) often are poorly integrated into a persons care plan. This needs to change as substance use can be a failed self medication strategy to treat depression.
  • Change the field. We can demand more cognitive behavioral therapy, which clearly helps with depression, but many mental health professionals aren’t trained to provide it.
  • Open up. We can change the dialogue about depression—it is a condition that needs to be talked about. Isolation and silence are the dangerous traveling partners of depression.
  • Come together. Our voice is more powerful together than alone.
  • Love. Like Robin’s character in Good Will Hunting we can reach out and love those we know who are struggling and let them know we are here for them.

Chances are someone you know is struggling with depression, and this is a simple way that can make a difference.

Rest in Peace Robin. We shall all miss you.

Photo: Flickr / Eva Rinaldi

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.

Tuesday, August 5, 2014

Connect 4 Mental Health®: Help Spread the Word for Community-based Innovations

By Mary Giliberti, NAMI Executive Director

The diversity of our lived experiences is part of what make NAMI unique. As NAMI, we stand together to advocate for innovations that hold the promise of recovery for everyone.

Among our core values are our recognition of the importance of community and a belief in our capacity to inspire and build better lives for the millions affected by mental illness. In our local communities, we believe greater collaboration among the mental health communities, individuals, families and community-based organizations will help promote effective, sustainable mental health care services and supports. This is turn will positively impact the communities in which we live.

While progress has been made, gaps still remain in access to mental health care. Many people who cannot get the care they need end up living on the street and are forced to “rely” on emergency rooms or state and local jails for getting treatment.

Approximately 40 percent of adults living with serious mental illness do not receive mental health care. Nearly one-half of all lifetime cases of mental illness begin by age 14; 75 percent by age 24. Early identification and intervention, unavailable for far too many, are critical to saving lives.

This is why last year NAMI, in collaboration with the National Council for Behavioral Health, Otsuka America Pharmaceutical, Inc. and Lundbeck launched Connect 4 Mental Health (C4MH), a nationwide initiative calling for communities to make treatment of serious mental illness a priority.
Community-based organizations can help turn the tide. Many evidence-based models that can help transform the mental health care system already exist in specific communities, but too often they go unrecognized.

Inspired by innovative examples honored at a C4MH Summit in 2013, NAMI is excited to announce the next phase of the initiative, the Community Innovation Awards, which will recognize additional models. The deadline for applications is Oct. 3, 2014.

Recognizing Outstanding Efforts

C4MH will award $10,000 each to four U.S.-based community programs that exhibit innovative work in any of the following areas:
  • Early intervention
  • Creative use of technology
  • Continuity of care
  • Service integration
Winners will also be able to participate in a one-on-one Mentorship Program to learn from the “national success communities” highlighted last year. These innovative programs, including an early intervention initiative in Florida, an integrated primary care and mental health care technology solution in Massachusetts and others, empower and equip individuals for success in their own recovery journey. Through the mentorship, we are striving to encourage replication as well as generate new ideas.

Too often people and families find little consistency between organizations and across systems of care when seeking mental health treatment and services. Through the C4MH awards, NAMI State Organizations, NAMI Affiliates and others are able to help promote and encourage programs that are working effectively in their local communities to improve the lives of people living with mental illness and who are at-risk.

Connect 4 Mental Health seeks to drive solutions by giving awards to and raising public awareness about those programs that are “doing it right.” You are encouraged to apply or recommend other mental health programs in your community to apply as well.

Stay Tuned for More

In the coming months, C4MH will also provide stories about the community-based organizations that will be mentoring award winners as well as stories from the individuals being served by them. Expect them to show pioneering, creative, and individualized programs and services. There is no “one-size-fits-all” approach to addressing mental health care locally, but we hope the stories will further promote actionable steps for communities to innovate and replicate programs and services that work.

Join the Conversation

In the meantime, I encourage you to participate in a Twitter chat, co-hosted by NAMI (@NAMICommunicate) and the National Council (@nationalcouncil), on August 14, 2014 at 2 p.m. ET. During the chat, you can hear from other communities and share your ideas about improving mental health care at a local level, as well as learn more about the awards program and how to apply. To join, follow #C4MH.

Wednesday, July 23, 2014

A Groundbreaking Commitment to Psychiatric Research

A Groundbreaking Study and the Largest-ever Commitment to Psychiatric Research


By Ken Duckworth, M.D., NAMI Medical Director

Today I was fortunate to be on a panel to discuss the findings of a major piece of work published in Nature and the unprecedented $650 million dollar gift from Ted Stanley to the Broad Institute to further this type of work. The event was a celebration of Mr. Stanley’s game changing vision and commitment to research in the underlying biology of psychiatric illnesses, and a call to action for more progress in this crucial area. I represented the perspective of NAMI and our urgent need for better treatment options.

The event was held at the Broad Institute in the heart of the MIT campus, which has become a hotbed of bioscience innovation and research. The Broad institute itself is bright and open, and conveys a sense of possibility. This was once a scruffy neighborhood and it was remarkable to experience the new energy flowing here. The Kendall Square area, at the center of the MIT campus, has been transformed by the influx of scientists and industry. This gift will continue to attract the best minds to continue the remarkable research momentum and help fill a critical need when funding from the U.S. government is uncertain.

The study compared the genomes of more than 37,000 people living with schizophrenia and compared their genes to people who do not live with the condition. The riddle that is the gene component to schizophrenia has vexed many but now the evidence base is rapidly expanding. Sorting out an enormous number of puzzle pieces and making patterns of them is the work of complex genetic assessment. The study identified 108 key genes (83 of which have not been previously linked to schizophrenia) in this analysis and the Broad Institute will do a deep dive of each of them. This study is only the first step; one of the lead scientists told me more papers are in press and will be coming out later this year.

I have invited the lead scientists to our national convention in San Francisco in 2015 to share their insights to our community. Steve Hyman, the director of the Stanley Institute for Psychiatric Research at the Broad Institute of MIT and Harvard and former director of the NIMH has emphasized an open source philosophy. This means that all the data sets will be shared with researchers from across the world. This approach will clearly advance the field faster. This is an advance in scientific culture as well as neuroscience.

In my work as a psychiatrist at the Prevention and Recovery from Early Psychosis (PREP) clinic I say “I don’t know” a great deal. My young patients and their families ask me, what caused these voices? How does the medication work exactly? Will reducing my medication after 3 years of no symptoms be a big risk to my recovery? For these and many other questions I offer my best understanding from the imperfect literature, and our theoretical understandings. For many of these questions we simply don’t have the building blocks we need. We simply need to learn more so better shared decisions can be made. My patients and families deserve better understanding to deal with symptoms that have so powerfully impacted their lives.

Patience and humility are of course key themes in this kind of basic science research. The researchers are humbled to say that they cannot promise a quick return, yet carry clarity of purpose: cancer was once a scary and seemingly unknowable illness that has very few treatments. Today because of better knowledge of the underlying science, there are new options being developed on a regular basis in the field of oncology.  This gift and this culture change and this line of inquiry will hopefully yield similar results in our field.

Tuesday, July 22, 2014

Helping Young People Share Their Experiences and Find Support

By Joni Agronin, NAMI Communications Coordinator

Last summer, when I was an intern for NAMI, I was fortunate enough to be able to attend a launch event on Capitol Hill for I listened to Congressmen and women talked about how important it was for the government to set aside party differences and address mental health issues in the coming year. I was there for the big reveal from the National Association of Broadcasters (NAB) of this brand new campaign that was aimed at teaching young people that it’s “ok2talk” about mental illness.

I remember furiously taking notes and thinking to myself-- this is awesome! But how come it took so long for something like this to be created?

The answer is because for so long, many people, especially parents were scared to have the tough conversations with their kids about mental illness and vice versa. Young people are supposed to be carefree and innocent. No parent wants to imagine their child struggling, feeling alone or depressed, or misunderstood.

But, the reality is that mental illness affects young people at an alarming rate. We know that 50 percent of all lifetime cases of mental illness begin by age 14 and 75 percent begin by age 24. We also know that early intervention and strong foundations of support are some of the best ways to lead individuals on the road to recovery. 

Ok2Talk was built as a forum for young people to talk about their mental health experiences and find support and solidarity among their peers. I remember at the launch event, after all of the politics and PR, a young woman named Ellie Hoptman from NAMI Northern Virginia walked up to the podium to make a speech. She talked about how hard it was for her to live with a mental illness and keep it hidden from her classmates until one day she finally spoke up and realized that she was not alone. Ellie said, “There were people out there like me, and it made all the difference in the world.”

Now, one year later, NAMI has been privileged with the opportunity to adopt this network of young people from NAB and continue to provide support to thousands of passionate, brave and articulate teens across the nation. The stories I read on Ok2Talk each day echo the things that Ellie said in her speech last summer.

"I don’t know why I decided to write this. I guess some part of me wants to reach out to someone that won’t judge"

“I know what it’s like to feel like no one cares. But, I got better and so will you.”

“I know it’s hard and you don’t see the point, but I promise, even though it sounds really cheesy, that all of it happens for a reason and you will come out so much stronger in the end.”

It’s amazing what a difference just being able to talk to someone can make. Support from a friend, parent, teacher or even a stranger can go such a long way.

Encouraging young people to speak up and ask for help saves lives.

If you want to share your story or just read the words of others please visit