Wednesday, September 24, 2014

“Why Do Y’all Have Tattoos?”

By Simone McKitterick, NAMI Intern

The 2014 NAMI National Convention was an amazing, surreal experience. For four days, people from all over the country came together to educate and learn about mental illness. The entire conference was a smorgasbord of options; from panels on the latest updates in schizophrenia research to exhibits with titles like “Bipolar Girl Rules the World!” Yet, as fascinating as many of the lectures were, the thing that really intrigued me was the conversations people were having with each other. Ordinary people were coming together to communicate for many reasons: education, concern and curiosity.

One of the most profound experiences I had was completely unexpected. I was looking at a booth on borderline personality disorder, when a man came up to me and started talking. He was there because his daughter has borderline and he wanted more information. I told him I had borderline and I’d be happy to answer any questions I could. He had one:

“I don’t meant to be rude, but why do y’all have tattoos? I’m what you might call “old-school,” and I don’t really get them. My daughter has a bunch of them all over her. Is it a Borderline thing?”

Very few things faze me, especially in regards to people asking questions about myself. They’ve run the gamut from polite to slightly tactless to downright insulting, and I’ve fielded them all as best I can. I should also mention that I have six tattoos, some of which are very visible when I wear a short-sleeved shirt. I listen to Goth and heavy metal music, and I wear a lot of black. I’m noticeably “different,” and I accept that people are going to have questions. But I never had anyone ask me if tattoos were “a borderline thing.” This was new, and somewhat refreshing. I liked this guy.

He must have realized how awkward his phrasing was, because he started backpedaling. I just smiled and told him that people with tattoos get them for different, often personal reasons, and that the same applied to people with borderline who have tattoos. I told him a little bit about why I had them: that, for a long time, I lived in a body that gave me a great deal of suffering. This was my way of taking back control. Each tattoo symbolized a time and place in my life. I also explained that many people who have borderline self-harm, and that I saw this as a positive alternative. Perhaps his daughter did too.

He smiled. “Yeah, you might be right. And considering what else she’s dealt with, tattoos aren’t so bad. It could be worse.”

Our conversation switched to several other topics surrounding this notoriously maligned illness, but the initial question remained with me long after the conference was over.

I shared with him how I had been diagnosed with borderline personality disorder 12 years ago and was told I would never get better. How I was informed that there was no cure, and that I shouldn’t ask too many questions about my diagnosis, because then I would become “fixated.”

Meeting other people with borderline wasn’t much better. I don’t know if it’s me, or the fact that this illness tends to emotionally cripple us to the point where we simply cannot interact with others because of the amount of psychic pain we’re in.

But here was a guy who was not a doctor, not a therapist, not a person who had dated someone with borderline and written us off as “psychopaths,” but a father concerned for his daughter. A father who lived through the chaos that ruled over his child’s life, who couldn’t totally understand why she was the way she was, but who nevertheless knew it was an illness, not a character flaw. And who loved her anyway.

When he looked at me, it was clear he didn’t see a lab specimen or an emotional leper, but a person who just so happened to have the same illness as his kid. The fact that she has tattoos or wore Edgar Allen Poe earrings? Feh. It could be worse.

Wednesday, September 10, 2014

Change Starts with Us

By Darcy Gruttadaro, NAMI Director of the Child and Adolescent Action Center

As college students begin the new academic year, there is one subject that all of them should be focused on, regardless of their major. Suicide is a subject that most people don’t talk about until a tragedy happens, yet it remains the second leading cause of death among college students. Campuses need to provide more education to stem the tide.

It is National Suicide Prevention Month so there is no time like now to start. Suicides have devastated families and college communities across the country. The overwhelming majority of people who die by suicide live with a mental health condition. They need access to effective mental health services and supports as early as possible.   

How do we address this public health crisis? So often after a suicide, the community is left wondering, how did this happen and what went wrong? There is certainly more we can do. We can start with educating and informing college communities about the warning signs of mental health conditions, suicide and how to help a friend.

In 2012, NAMI released College Students Speak: A Survey Report on Mental Health, documenting the experiences of college students living with mental health conditions. Students who responded to NAMI’s national survey called for far more education and information about mental illnesses on campuses. They expressed the critical need to educate students, administrators, faculty and staff about mental illness.

With this in mind, NAMI developed a toolkit to educate and inform. It includes:

  • An engaging presentation covering the warning signs and how to help a friend.
  • A step-by-step guide on how to present the material, complete with discussion questions.
  • Fact sheets to reinforce information presented.
  • Customizable flyers and social media posts as an easy way to get the word out.
  • A customizable template on the mental health resources and information on campus.
  • Videos to share through social media to increase conversations about mental health.

There is great hope in the rapid expansion of NAMI on Campus clubs across the country. These clubs raise awareness and advocate for better and more accessible mental health services and supports on college campuses. They make it OK to talk about mental health issues, decrease stigma and bring hope.

People experiencing a mental health condition often feel isolated and alone. This can be especially difficult for college students who are away from home and under tremendous academic and social pressure. The more we can reach students, resident advisors, faculty and staff with information, the better equipped they will be to help. We can all play a part in lifting the shame and stigma that all too often hold people down.

Together we can stem the tide. Change starts with us.

If you or someone you know are experiencing thoughts of suicide please call 1-800-273-TALK (8255), the National Suicide Prevention Lifeline.

Tuesday, September 9, 2014

How is Your Health Insurance Treating You?

By Everly Groves, NAMI Policy Intern and Sita Diehl, NAMI Director of State Policy and Advocacy

Dramatic changes now taking place in our nation’s health care system should mean that people living with mental illnesses will have better access to mental health services. But will they? NAMI created a brief online Coverage for Care Survey to answer this very question. We need your help to find out how recent changes in federal law affect you and your family.

Over 11 million people with mental illness were uninsured as of 2010. Most are now eligible for mental health and substance use care because of changes to health coverage under the Affordable Care Act (ACA). The ACA requires Medicaid expansion and individual and small group private health plans to cover mental health and substance use services as one of the 10 Essential Health Benefits. This change will mean that millions of people will be getting access to private health coverage or Medicaid for the first time.

Even more changes to mental health and substance use coverage came July 1. Provisions to the Mental Health Parity and Addiction Equity Act of 2008 were put in place to ensure parity for mental health and substance use care. But what exactly is parity? Parity ensures that all plans cover mental health and substance use treatment on par with other types of care. That means fair and equal terms for what types of services are covered, the procedures necessary to get care and how much you pay out of pocket.

Coverage for Care Survey
Because these changes are so important, NAMI wants to understand how the ACA and the new parity rules affect you and your ability to get the care you need. We created the Coverage for Care Survey to learn from you.

We want to hear from everyone in need of mental health or substance use care. So if you or your family member uses these services, complete this survey! It doesn’t matter if you have private health insurance, Medicare, Medicaid, TRICARE, VA health benefits, student health, any other type of coverage or don’t have coverage at all.

Take this survey on behalf of you or your loved ones in need of mental health and/or substance use care. Spread the word to your friends, family, co-workers, and colleagues. It should only take 15-20 minutes. Post the link on your Facebook or Twitter! The more responses we get, the stronger our findings will be.

The deadline to complete the survey is 12 p.m. EST on Sept. 30, 2014.

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 Vinfen, 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 awards, 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.