Tuesday, October 28, 2014

Stopping Schizophrenia in Its Tracks

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

For those experiencing psychosis, early identification and intervention matter—a lot. It lessens the long-term severity and often prevents psychosis from worsening. An effective early identification and intervention program should include the following coordinated array of services and supports:

  • Supported education and employment.
  • Cognitive behavioral therapy.
  • Peer support.
  • Family support and education.
  • Case management.
  • Community outreach.
  • Low dose antipsychotic medication.

These services work so well because they are offered together to provide the skills and support that youth and young adults need to get better. They also take into account the context of a young person’s life and the key role that peers and families play in recovery.

FEP programs reduce costly hospitalizations and put youth and young adults with psychosis on an early path to recovery.

When you fund upstream interventions, you can prevent the tragedies associated with untreated mental illness: school failure, unemployment, hospitalizations, homelessness, jail and suicide. Investing in effective programs that intervene early produces far better outcomes for individuals, families and communities.

There are effective strategies available, so why aren’t more young people getting help? One of the main reasons is that these services and supports are simply not available in communities. However, there has been progress made recently that to help ensure the availability of these resources in more towns and cities across the U.S.

One significant event is that Congress has now required states to use 5 percent of their Mental Health Block Grant for First Episode Psychosis (FEP) programs. This means that states are obligated to set aside a certain amount of their federal funding to address the importance of early intervention.

How Is NAMI Helping

We recognize the urgency in expanding these programs. Our advocacy work and involvement in these programs is happening at all levels of the organization.

NAMI NYC Metro is partnering with OnTrackNY, an FEP program, in providing support groups and peer support for youth and young adults experiencing early psychosis. NAMI Connecticut is offering peer-run young adult support groups located close to FEP programs to make it easy for young adults to join. NAMI Minnesota has partnered with an FEP program and is creating education and support programs for youth experiencing early psychosis and their families.

Oregon was an early adopter of these services and supports, having witnessed the success of these programs in Australia. Tamara Sale, the director of the Early Assessment and Support Alliance (EASA) in Oregon and a former long-time NAMI Oregon board member, shared how their program works successfully with youth and young adults experiencing early psychosis.

The EASA program recognizes that it can be difficult to engage youth and young adults experiencing early psychosis, so it uses strategic community approaches that meet young people where they are with messages of hope and relevance to their lives. They are flexible and persistent, even with youth and young adults that seem entirely uninterested in mental health care.

What You Can Do

FEP programs exist in a handful of communities and more must be done to spread these programs across the country. Here is how you can make sure that happens.

  • Learn more about FEP programs. Understand why these programs are pivotal in creating better outcomes.
  • Email or Tweet your Congressional members to thank them and to ask for their continued support of FEP programs.
  • Connect with your NAMI Affiliate in advocating at the state and federal levels for FEP programs so that youth and young adults experiencing early psychosis can access effective services and supports.

We can and must change the trajectory of people’s lives by intervening early with recovery-oriented and effective services. We simply cannot afford to wait.

Monday, October 27, 2014

Should We Get Worked Up Over Halloween Costumes?

By Bob Carolla, NAMI Director of Media Relations

Flickr / Hanna Horwarth

Halloween is big business. According to the National Retail Federation, Americans will spend $7 billion this year on festive celebrations, including pumpkins—new sets of pumpkin carving tools—and Katniss Everdeen, Ninja Turtle, Batman and Elsa and Anna costumes.

Seventy-five percent of people will give out candy. About 40 percent will wear costumes—the average cost of which is $27. Thirty percent will visit haunted house attractions.

Unfortunately, there are too many cases where haunted houses are set up as “haunted asylums” with depictions of people with mental illness as violent monsters. Costumes also are sold of “mental patients” in straitjackets.

Stigma is No Treat

Even worse are cases where a person will hang a figure in a noose from a tree in their yard—not knowing or recalling that someone who drives by every day had a son or daughter who died by suicide. Let alone the symbolism of racial and ethnic lynching that nooses represent.

These kinds of costumes and attraction perpetuate the stigma that traditionally surrounds mental illness. They are offensive stereotypes. The U.S. Surgeon General warned 15 years ago that stigma is a major barrier to people reaching out for mental health care when they need it. People living with mental illness also internalize stigma, which jeopardizes recovery.

NAMI loves Halloween as much as anyone. But would anyone sponsor a haunted attraction based on a cancer ward? How about a veteran’s hospital with ghosts who died from suicide while being treated for posttraumatic stress disorder (PTSD)?

What Should You Really Be Concerned About?

Last year, NAMI received many comments about protests over Halloween stigma. Most individuals and families affected by mental illness agree with them.

“Portraying any individuals in a group as scary, wicked or dangerous because of an illness is insensitive, callous and mean,” said one advocate.

Please be kind while enjoying this wonderful holiday, let’s not hurt anyone buy being insensitive to their problems. There are hundreds of other choices for costumes.”

One person who lives with mental illness said that “haunts and bizarre things are just part of the holiday fun. Everyone is reinvented via costumes. I don't think we are singled out or stigmatized or made an object of, if people dress in a strait jacket.”

One dismissed concerns saying that the world has too much political correctness.” Another recommended that we “pick our battles” and that there are bigger concerns.

What do you think? Are some things okay while others are not? Here are some examples:

What You Can Do

Never underestimate the power of polite conversations by phone, email or social media to raise awareness.

For costumes:

  • Let family, friends and local community groups know your concerns.
  • Post comments on company or store Facebook pages.
  • Send a message through website “contact” features—or after a little sleuthing, to the company’s CEOs or public relations executives. Their email addresses are sometimes listed under “corporate” or “investor” information.
  • Contact the managers of local stores to ask that politely that costumes be removed from shelves and that they share your concern with regional managers to be communicated up the corporate chain.

For asylum attractions:

  • Alert your local NAMI Affiliate, family and friends to phone or email the sponsor of an attraction. Post on the company Facebook or Twitter pages.
  • Contact sponsors. Ask that offensive parts of an attraction or advertisements be removed. Changing a name and using “haunted castle” and generic “monster” themes may be all it takes.
  • Ask for as group meeting. Be flexible and patient. In some cases a sponsor can’t make changes immediately but will agree to do so in the future. If so, ask for a public statement or letter. Use it also as an opportunity to find ways to work together looking forward for community education.
  • Large commercial attractions may be difficult or slow to change because of the amount of financial investment.
  • Local civic organizations, high school clubs or similar community groups have greater desire to resolve controversy--they often have no awareness of stigma issues and did not intend to offend.

A Teaching Moment

Contact local newspaper editors and television news directors. Educate them also about misconceptions about mental illness and your concerns.

If they have run promotional stories about a “Haunted Asylum”-type attraction, or related advertising ask them to also run a story about the “other side of the story.” Ask them to check out for themselves any offensive merchandise in a local store or bring a sample to a meeting.

Don’t be surprised if some people react by saying “It’s only Halloween” or are even nasty. Take the high road. Stay polite and respectful in the public dialogue. Even if it seems that too many people disagree with your position, you win simply by raising awareness.

Wednesday, October 22, 2014

Go Vote. Mental Health Care Depends On It.

By Dania Douglas, NAMI State Advocacy Manager

Flickr / Joe Shlabotnik

It’s that time of year when various colored signs start popping up on lawns and medians across the country. Going to the farmers markets or getting on and off public transportation most likely means you’re going to be handed a pamphlet of sort. In other words, it’s election season. Political advertisements fill the radio airwaves and newspapers are bursting with election-related articles. So what does any of it have to do with mental health? 

Each year elected officials make decisions related to health care, education, housing and employment that will directly impact the lives of people living with mental illness. Today’s candidates will become tomorrow’s elected officials, with the power to make important decisions. As voters concerned about mental health care, it is critical that we learn about issues, educate candidates about the importance of mental health, and use our votes to elect representatives that will help improve mental health care in this country.

Be Prepared

There are a few important steps you can take to make sure you’re ready for Election Day! Check to make sure you are registered to vote. Make sure you know where to go to cast your vote on Election Day as local polling places can change. Make sure your voter ID is up to date.

Get to Know the Candidates

Do your homework. Listen to what candidates are saying about mental health. Better yet, ask questions. If you feel that candidates are not addressing important issues contact their campaign. Ask them about the issues that are most important to you. If you don’t know where to start, check out our materials for sample questions. Be ready to educate the candidates, to dispel myths or stereotypes, and to explain why mental health issues are so important. If you have a chance to meet with your candidate in person, take advantage of that opportunity. If not, email, call or write. Visit NAMI’s website for more important tips on talking with candidates.

Know Your Rights

Voting is a Constitutional right and the foundation of our democracy. People with mental illness should have full and equal access to polling places. Unfortunately, misinformation and misunderstanding about mental illness can lead to discrimination. However, there are numerous federal laws that help safeguard your right to vote. Learning about these laws can help you make sure your rights are protected. Voters with mental illness also have the right to have assistance on voting day.

If you need assistance with voting, federal law gives you the right to choose the person, such as a friend or family member, who will help you cast your ballot. In some states, people can be disqualified from voting if they have a guardian or have been declared incapacitated by a court of law. NAMI has created a guide to state laws that affect the voting rights of people with mental illness.

Election Day, Go Vote!

Nov. 4, 2014 is Election Day. Make sure you show up to the polls or find out how to cast an absentee ballot. Every vote counts. Your vote is your voice. Use it to tell candidates that mental health care matters!

Monday, October 20, 2014

The Village: Opening Doors for Those in Need

Chrystal Arzola and Stephanie Morabe, assistant
director of Village West.

By Katrina Gay, NAMI Director of Communications

High rates of homelessness and the revolving door of jails for many who live with serious mental illness are challenges many communities face. Nearly 25 percent have mental illness and an even higher percentage have substance abuse disorders. The Twin Towers Jail, part of the Los Angeles County jail system, is the world's largest jail, and the nation's largest mental health treatment facility.

Recognizing that the lack of continuity of care was a huge barrier to helping those in most need, MHA Village (“the Village”) stepped to the plate in 1990 to offer a solution. This nationally-recognized program helps close the gap and encourage the reality of recovery through an approach that aims to provide consistent treatment. Key components of the program include:

  • Focusing services on those who need them most, including those who access emergency rooms, inpatient treatment for psychosis, have not responded to traditional service systems and who often cycle in and out of jails.
  • Providing coordinated care, housing and employment assistance, rehab support and other services.
  • Connecting with three businesses that are staffed by members of the Village to increase competence and confidence.

The Village is one of four exemplary programs heralded by Connect4MentalHealth, a partnership that aims to promote innovative community solutions to our national mental health crisis. The Village is especially recognized for the success in providing integrated health care for those who live with serious mental illness.

Once homeless and struggling with drug addiction, Chrystal Arzola came to the program because she was “tired of being tired.” Encouraged by her sister, her first experience with the program was group housing which provided her a sober living environment and jumpstarted her recovery journey.

”I came in angry, not able to get along with anyone. I wasn’t even aware of how I was part of the problem—living on the streets like I had been doing before I came to the Village, I became defensive, angry and ready to fight,” said Chrystal.

The staff at the Village and the integrated program helped Chrystal learn how to control her anger. “They would hear me out. They really listened and did not push me. They understood, and through that, I began to understand, too,” Chrystal shared. “Now I know how to cope better, how to communicate. I have a job [as a staff member at the program facility], I am healthier and I go to church with my sister.”

The Village aims to build a community by focusing intensely on each individual person. By providing coordinated care, including integrating mental and physical health needs, peer support, connections with the larger community, the Village helps each person gain independence and achieve wellness and meaning.

Happier and healthier, Chrystal serves as a mentor to others at the program. “Now, I have my family back. The Village helped me learn how to better myself. I can actually say that now, I am happy. All doors are open now.”

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 Chrystal, live healthier, fuller lives. 

Thursday, October 2, 2014

Refusing to Leave Borderline on the Sidelines

By Courtney Reyers, NAMI Director of Publications

“I’ve been trapped all my life not by man or by cages but by my own emotions. Where I’ve been, what I’ve seen while traveling inside myself can be summed up by one word: damn.”

Brandon Marshall is one of the NFL’s best wide receivers. He’s a 5-time Pro Bowler and has the NFL record for catches in game. His nickname is the Beast. But Marshall’s career hasn’t always been smooth. The Chicago Bears star was the subject of A Football Life, a documentary series produced by the NFL Network, on Sept. 19. This inside look at the NFL player offers a deeper look at his life and career—and his journey of living with borderline personality disorder (BPD).

The NFL is Marshall’s platform, but awareness is his purpose. BPD is frequently viewed as a disorder that affects females and means that you’re “weak,” but Marshall embraces who he is, owns up to his mistakes and takes full responsibility for his recovery. Before Marshall was diagnosed, though, it was a pretty bumpy ride.

“There would be times where a switch would just flip and you’d be like ‘I don’t know this guy,’” Bears quarterback Jay Cutler says in the documentary. Cutler and Marshall started their careers together on the Denver Broncos and have found themselves back together on the Bears.
Marshall acted up in practice and during games, disobeyed his coaches, sabotaged plays and received penalties that jeopardized his team—and career. Two NFL teams dropped him due to his antics. He also racked up two domestic abuse charges. He suffered injuries to himself too—even punching through the screen of a TV.

Brandon’s mother says she noticed “outbursts and hissy fits” during his time with the Broncos. His mom and teammates approached him asking him to “grow up,” to “control” his behavior. His mother says “We still weren’t thinking something was clinically wrong—we were under the impression that Brandon could control this.”

Finally after years of ups and downs, Marshall was diagnosed with BPD and was able to take control of his life.

Marshall voluntarily joined a 3-month outpatient program at McLean Hospital in Belmont, Mass., where he used treatments like cognitive behavioral therapy (CBT) and dialectical behavioral therapy (DBT) under the guidance of Dr. John Gunderson. Psychotherapy is the cornerstone of treating BPD and there is no medicine approved by the FDA for treating the illness, though some people will take medicines to control symptoms such as anxiety.

After educating himself on his illness and continuing to engage himself in therapy, Marshall became a heavy-hitting advocate for mental health awareness. In 2013 he was hit with a $10,000 fine by the NFL for rocking green cleats (green is the color for mental health), spoke at the NAMI National Convention in 2012 and started the Brandon Marshall Foundation in 2013. He and his wife Michi have a strong connection to NAMI Chicago and NAMI Cook County North Suburban in Illinois. Michi is an avid NAMIWalk participant, and attended the NAMI Chicago walk last weekend and will be walking at the NAMI CCNS Walk on Oct. 18.

By speaking out and proudly owning Brandon’s recovery, the Marshalls are becoming powerful advocates. Brandon’s willingness to use his public status to create understanding around mental illness is a quality I wish all public figures and celebrities tapped into.

Speaking out is a choice and I can respect that, but every time we get to hear about somebody who overcame a mental health condition, it creates hope. It lets us know that even if you feel like the world is against you, you’re not alone if we’re dealing with something similar. It shows us how mental illness can touch anybody. And it can even save a life.

During Mental Illness Awareness Week and the rest of Oct., the National Education Alliance on Borderline Personality Disorder is sponsoring a social media campaign to fight stigma: #BeyondBPD.

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.