Winter 2016
Patrick Kennedy
Changing the Way the U.S. Views Mental Health
Inside: States Are Making Improvements in Mental Health Care, but Is It Enough?
LEARN HOW TO BE...
and replace the stigma of mental illness with hope and understanding.
1. Learn about mental health—educate yourself and others 2. See the person not the illness—strive to listen, understand, tell your own story
Steps
3. Take action—spread the word, raise awareness, make a difference
www.nami.org/stigmafree
Contents Winter 2016 • Vol. 14, No. 1
The NAMI Advocate is published by NAMI, the National Alliance on Mental Illness. 3803 N. Fairfax Drive, Suite 100 Arlington, VA 22203-1701 Ph: 703-524-7600 • www.nami.org/advocate Executive Director Mary Giliberti Medical Director Ken Duckworth, M.D. National Communications Director Katrina Gay Communications Manager Brendan McLean Graphic Designer Cindy Stone Additional Copyediting Blackline Editorial NAMI HelpLine 800-950-6264 NAMICommunicate NAMI NAMICommunicate NAMI is the National Alliance on Mental Illness, the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness. We get it. We’ve been there. NAMI embraces people living with mental illness and their families, who often feel isolated. We offer understanding and support unique to those who are affected by these conditions. NAMI means more than hope. We educate families and individuals, and we advocate in every corner of the country to ensure better lives for everyone.
For information on submitting an article for publication, visit www.nami.org/submissions. © 2016 by National Alliance on Mental Illness. All rights reserved. Editorial Note: Information provided in this publication is for informational purposes only and is not intended as medical advice. NAMI does not endorse any advertisements or advertising companies in this publication. Individuals and their family members should always consult with their own treatment providers about decisions concerning treatment and medications. Some stock photos in this publication are being used for illustrative purposes only, and any person depicted in stock images is a model.
6 States Are Making Improvements in Mental Health Care, but Is It Enough? 8 Social Security for Disabled Children Benefits You May Not Know About
10 Who Is the Right Mental Health Professional for You? 12 Learning How to Be Open 14 If You’re Worried About Your Mental Health, Don’t Wait 16 A Common Struggle, an Uncommon Leader How Patrick Kennedy Is Helping Change the Way the U.S. Views Mental Health
19 Finding a More Effective Way to Treat Schizophrenia 20 What’s Next for RAISE? 22 Service in Silence Military Family Mental Health
24 My Journey to Become a Mental Health Professional 25 Why Does a Diagnosis Change? 26 Touched with Fire Offers a Look into the Often Difficult Relationships Within Families Departments 2 Executive Director and NAMI President’s Letter 3 Affiliate Spotlight: NAMI Johnson County 4 NAMI News 28 Book Film Art Winter 2016 | NAMI ADVOCATE | 1
A New Profile in Courage
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have been reading the Harry Potter series to my son in the past few months. In the wizarding world, “He Who Must Not Be Named” is mentioned in hushed tones and no one dares speak his name. However, Harry Potter, insists on calling him by his name, Voldemort, to diminish the fear and power that he holds. I have been thinking lately of our country’s history Mary Giliberti of “health conditions that must not be named” and the power that they hold over us. In the 1950s, my grandmother was diagnosed with breast cancer. My mother had no idea about her mother’s diagnosis until she was told several months later, because the c-word was not to be spoken. Several decades later, another family member died young. My mother believes it is likely that he died of AIDS, given his symtoms and history of drug use, but no one in the family really knows because it was not talked about. Today, the health conditions that no one talks about are often mental health and substance use. But just as some had the courage in the past to break the taboo, there are brave souls who are coming forward to tell their stories. One of the most prominent is featured in our cover story: my friend Patrick Kennedy. In his memoir, A Common Struggle, former Rep. Kennedy describes his mental health and substance use conditions and those of his family members, and masterfully weaves together this highly personal narrative with incisive policy prescriptions to address a failed treatment system. This would be a courageous accomplishment for anyone. For Patrick, it was lionhearted because he was writing about his family and about his late father, Sen. Ted Kennedy, who championed legislation helping the poor, immigrants, children and those with mental health and substance use conditions seeking parity. The book has proved divisive, including in Patrick’s family. But I think that Patrick knew that this would in actuality be the best way to continue that legacy. What better way to champion those who struggle with mental health and addiction conditions than to acknowledge that these are indeed shared struggles? I will never forget one of my first NAMI state conferences after I had become executive director. A woman came up to me and said that she loved NAMI, but she had to limit her involvement. When I looked puzzled, she said that her son was worried that if others in the community knew she was involved in NAMI, they would know that he had schizophrenia. Her voice and his fear have stayed with me ever since. I believe that these fears will ultimately be assuaged, and that Patrick’s work will be seen as a transformational contribution to the ongoing fight for equity, fairness, respect and dignity for those conditions that must be named.
Mary Giliberti, J.D. NAMI Executive Director 2 | NAMI ADVOCATE | Winter 2016
NAMI Must Try and Reach Everyone
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ecoming president of NAMI has been the result of many years of NAMI volunteerism. Like you, NAMI has made a huge difference in my life. The education, support and friendships I have made during my 20-plus years of NAMI membership are priceless. Before finding NAMI, my family spent three years struggling to understand mental illness all alone. Marilyn Ricci I became an ardent volunteer because I didn’t want that to happen to any other family. However, when I looked out over the convention crowd this past July, I was struck by our lack of diversity. It made me realize that many families are still alone. We know mental illness strikes all cultures equally. To be a truly welcoming organization, we have to reach out to all our neighbors. This past February, our executive director, Mary Giliberti, addressed NAMI leaders about the partnership of NAMI with Alpha Kappa Alpha Sorority, Inc. (AKA), the oldest African-American sorority in the country. This has been an opportunity for us to reach out and offer our programs to the African-American community—a community often completely unfamiliar with our work. Many of you have taken Mary’s request to build a relationship with AKA. For example, NAMI Massachusetts has collaborated with them several times throughout the year, including on four Sharing Hope presentations, and has a few future events with them already planned. Sharing Hope is NAMI’s presentation designed to reach out to members of the AfricanAmerican community. To find out more, visit www.nami. org/sharinghope. I hope you have found that by embracing diverse cultures, your NAMI membership is even more rewarding for you. If you haven’t yet connected with AKA, see if there is a chapter in your area and reach out. AKA has made mental health a priority for 2016, too. To increase the diversity of our welcoming face, let’s think about our board elections this year. There is more information about nominations on page 29 in this issue of the Advocate. Are there members of various cultures whom you can encourage to run for your boards, or for our national board? Maybe even yourself? We want to be available to everyone who can benefit from our support, education and advocacy. Let’s work hard to not leave anyone out!
Marilyn Ricci President, NAMI Board of Directors
A f f i l i a t e
S p o t l i g h t
Look Ahead and Prepare for Success NAMI Johnson County Provides an Excellent Example to Follow By Brendan McLean, NAMI Communications Manager
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hat does it take to make a NAMI Affiliate a success? For Mary Issah, the executive director of NAMI Johnson County (Iowa), the answer would most certainly be two things: dedication and
support.
Issah first heard about NAMI while she was enrolled in a graduate school program for rehabilitation counseling: A NAMI In Our Own Voice presenter came to one of her classes. She has now been with NAMI for 10 years, including the last two as the executive director. NAMI Johnson County is a small operation. It shares office space with four other nonprofits in Iowa City, Iowa. It’s a team of four: herself, an office manager and two peer-support specialists. They of course have their phalanx of volunteers as well. So while it may not be the smallest NAMI Affiliate out there, it certainly isn’t the biggest, either. When I asked her how her experience has been in the past two years as its executive director, she just had a one-word response:
focused on the future. “Re-affiliation affirms that we have a strong foundation for what we’re doing. We’re in a good standing. It’s really helped us grow our other programs.”
Many things kind of happened all at the same time, she explains. While collaborating with four other local nonprofits to find a new office space, they created a peer wellness program called R Place. The old office became the peer wellness center.
R Place, for example, had more than 700 visits between January and October of this year. Coinciding with the growth of the peer wellness center has been the increase in student volunteers. Many of them come through the rehabilitationcounseling program that Issah went through herself, but others come through the psychology and social work program at the University of Iowa, also located in Iowa City.
And of course, there are the small things she helps out with every day: Facebook, support groups, keeping up with membership. She also handles the NAMIWalk. NAMI Johnson County will be holding its 12th NAMIWalk this upcoming spring.
I asked her what one piece of advice she would give to other Affiliates. “Pay attention to the details,” she advises. “It really takes someone who’s dedicated to the project. It was difficult to delegate out parts of it. In our case, the dedication of our board member Darren Peterson really helped.”
This scenario probably sounds familiar to many of you. But one thing that makes NAMI Johnson County special is that this year, it became one of the first of 22 NAMI Affiliates to be re-affiliated.
Another important piece that helped NAMI Johnson County is the support from its State Organization, NAMI Iowa, and Nancy Hale, its executive director. Five of the 22 NAMI Affiliates that have been re-affiliated so far are in Iowa.
So, what does it mean to be re-affiliated? In Issah’s eyes, “it means we can keep looking forward and making plans.”
The positive comments that Issah occasionally receives help make all the hard work worthwhile. A few months ago, a woman approached Issah to let her know she had not only joined the group Issah had referred her to, she was now leading it. “We just don’t know the impact we have on people,” she said.
“Busy,” she said, followed by a few chuckles.
From an official side of things, it means that NAMI has confidence in its operations and ability to fulfill the important support, education and advocacy roles in its Iowa community. NAMI Johnson County was re-affiliated as a Model A Affiliate, which means it is an incorporated nonprofit organization operating independently. There are also Model B and Model C Affiliates.
For more information on re-affiliation, visit www.nami.org/ standards. You will be asked to sign in using your NAMI.org login information.
Issah thinks thinks the re-affiliation process was definately worth it. They have a new strategic plan, and they are now Winter 2016 | NAMI ADVOCATE | 3
N A M I
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Only 23 States Increased their Mental Health Budgets This Past Year, New NAMI Report Finds NAMI’s third annual report on state legislation that took place across the country in 2015 found lots of good news, but unfortunately some bad news as well. The good news: Two federal bills have begun to move forward in Congress. Together, these bills represent a comprehensive framework that supports state innovations. NAMI was also pleased to see a volume of legislation in 2015 that addressed broad systemic issues such as Medicaid, insurance parity, workforce capacity, school-based mental health, criminal justice and prevention. The bad news: This year, only 23 states increased their mental health budgets. There was also little attention paid to early identification and early intervention, school-linked mental health services, or housing and employment, even though such programs are critical in supporting individual well-being and are long-term, cost-effective uses of taxpayer dollars. To see more from this year’s report, see page 6.
Fox Sports Partnership with NAMI Is Going to Be a Home Run It doesn’t matter which sports analogy you use to describe this new partnership, they all mean the same thing: NAMI is changing the way America sees mental health, and people are starting to notice. FOX Sports has chosen to partner with NAMI for the next two years.
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N A M I
Nominate Your Candidate for NAMI Board of Directors Nominations are being accepted for candidates for election to the NAMI national board of directors at this year’s annual meeting at the NAMI National Convention in Denver in July 2016. Five (5) candidates will be elected to serve for the standard three-year term.
N E W S
New NAMIWalks Website Launches If you haven’t had a chance to check it out yet, go to www.namiwalks.org and take a look. We have updated the NAMIWalks website to make it easier to navigate and to provide additional resources. Make sure to sign your team up, if you haven’t done so already!
Amendments to bylaws and proposed resolutions are also being accepted. All material must be received by April 9, 2016—90 days before the date of the annual meeting. For more information about the election process, go to page 29 or visit www.nami.org/voting.
NAMI Recognized in National Report for Partnership for Providing Behavioral Health Care to Veterans and Their Families In a study it released in August 2015, RAND Corporation identified nine key public/ private partnership attributes that are relevant to veteran behavioral health. The study provided examples of success stories and models for best practices. NAMI was among the organizations highlighted in the study. NAMI was used as an example of a best practice because of the public/private partnership it has with the Veterans Administration. Our partnership is characterized by a sharing of detailed plans, agreements and resource strategies, and active communication style. Read more at http://bit.ly/RANDNAMIReport.
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States Are Making Improvements in Mental Health Care, but Is It Enough? By Jessica Hart, NAMI State Advocacy Manager
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very single day, people are battling toward recovery from mental health conditions for themselves or their loved ones. Every. Single. Day. Fortunately, NAMI is here to help. We reach out and lend a hand in communities around the country through support groups, education and presentation programs. This is where you can talk with friends and your NAMI family about what is going on in your life and find understanding and support. Sometimes, this conversation can shift to the challenges that you face when trying to find services and supports for yourself or a loved one. Are you having trouble getting safe, affordable housing? Is your daughter showing early signs of psychosis, but you can’t find services? Is your son in jail, not getting any treatment, and has he been put in solitary confinement? Are you struggling to find an inpatient bed for your significant other? Do you even have access to mental health professionals, or is your closest psychiatrist six hours away? Here is where NAMI advocates pick up the ball. Advocates see the broken system and challenges that are preventing people from getting the help they need, and ask, “How can I make it better? What can we as a community, state or country do to fix what I see going wrong?” Then they work hard to change it. You have the power to be a NAMI advocate. All you need is your voice and the fire inside you to make the system better for yourself, your loved ones and your 6 | NAMI ADVOCATE | Winter 2016
NAMI family. For you, our newest NAMI advocate, we have a new report on state legislation that you can use to make the mental health system in your state better. Look at the map on the opposite page. See whether your state is investing more money—or less—into your mental health system. If you don’t like what you see, look up your state elected officials at www.nami.org/advocacy and call, email and tweet them. Ask them to increase the mental health budget when the state legislature comes back into session. Tell them you are a voting constituent. Explain what it would mean to you or
If you don’t like what you see, look up your state elected officials at www.nami.org/advocacy and call, email and tweet them. Ask them to increase the mental health budget when the state legislature comes back into session. your family member for them to make the commitment to invest in the state’s mental health budget. Did some of the situations above where people couldn’t get the care they needed sound familiar? The good news is that some states also saw those challenges and took up the banner to advocate for better services and supports, and they succeeded. You can succeed, too, by taking what these states have already done and giving it to your local elected
official to introduce as a bill in your state. Five bills stood out to NAMI, and you have a role in making them a reality across the country. Housing How many people do you know in your community with mental illness who cannot find safe, affordable housing? Housing is a cornerstone of recovery for people with mental illness, yet, on average, the rent for a studio apartment exceeds 90% of disability income. Arizona created a housing trust fund for rental assistance to help people with serious mental illness through HB 2488. If housing is something you are passionate about, take this piece of legislation to your local elected official. First Episode Psychosis Programs Are you interested in making sure that people with early psychosis get the services they need? You can help by getting your state to join the investment in evidence-based practices. Leading research shows that early intervention through first episode psychosis (FEP) programs enables young people to manage psychosis and get on with their lives. Minnesota enhanced federal dollars through the passage of SF 1458, which supports evidence-based FEP programs. Criminal Justice and Mental Health Do you think it is horrible that 2 million people with mental illness are currently in jail instead of getting services they need in the community or hospital? You can help rectify this injustice in your state by looking to states like Utah. Utah passed a bill (HB 348) that requires the state departments of corrections and mental health to collaborate on providing mental health treatment to inmates by
State Mental Health Budgets, Fiscal Year (FY) 2015-2016
RI
DC
Increased Decreased Maintained Pending
developing alternatives to incarceration and implementing graduated sanctions and incentives. Psychiatric Inpatient Beds Do you think that your state doesn’t have a good enough system or a system at all for tracking psychiatric inpatient beds? You should look to Virginia. Finding a psychiatric bed in a crisis is challenging. As a result, people with mental illness are often boarded in emergency departments for exceptionally long periods. Lack of information on the availability of psychiatric beds throughout a state is often part of the problem. Virginia HB 2118 requires all public and private facilities to report psychiatric inpatient and crisisstabilization beds at least once daily. Telehealth Is your policy issue a shortage of mental health professionals? Washington state is trying to fix this common problem. There is an acute nationwide shortage of
Only 11 states have increased investment each year from 2013-2015: Colorado, Connecticut, Delaware, Idaho, Minnesota, New Hampshire, New Jersey, South Carolina, South Dakota, Virginia and Washington.
mental health professionals. Telehealth can make mental health expertise more available to underserved communities by using readily available technology. However, challenges in reimbursement have resulted in underuse of this valuable resource. Washington’s bill (SB 5175) defines telemedicine as a reimbursable service for the purposes of diagnosis, consultation or treatment.
system. Look for the gold stars in the policy issues that you care about. Call, email and tweet your elected official(s) to get them on board. Together as NAMI advocates, we can build a movement to help transform the mental health system in America.
Use this report as a tool to help drive policies and investments that will improve your state’s mental health
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Social Security for Disabled Children
Benefits You May Not Know About By Timothy Cuddigan
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llen struggles with bipolar disorder and borderline personality disorder, and her parents worry about her future. (Ellen is a real person and gave us permission to tell her story here, but to protect her privacy we are not using her real name.)
Ellen, 24, has had multiple hospitalizations for suicide attempts since she was a teenager. She takes medications, and sees a psychiatrist and a therapist on a regular basis. She wants to work, but her symptoms cause employment problems. As a result, she has worked at several jobs, but has never earned much money. Ellen is not married and lives with her parents, and her personal life is chaotic. Her parents worry about what will happen to her when they are no longer around, and they especially worry about her medical needs. When Ellen’s father retired and applied for Social Security retirement benefits, he indicated that he had a child who had become disabled before she was 22 years old. Ellen applied for 8 | NAMI ADVOCATE | Winter 2016
benefits as a Disabled Adult Child (DAC) on her father’s earnings record. Ellen’s lawyer gathered medical and school records, obtained doctors’ reports about her condition and her limitations, and presented her testimony to an administrative law judge at a hearing. The judge awarded her DAC benefits because Ellen was able to prove that she is disabled, her disability began before the age of 22, she has not been able to work successfully and she is unmarried. Her parents are relieved to have a more secure future in place for their daughter with a modest monthly check and Medicare benefits. Ellen hopes she will be able to work when her conditions are under better control. Ellen met the requirements for one of three categories of children who may be eligible for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI). Unfortunately, I have discovered that not everyone knows about these opportunities to help their children receive additional monetary support. There are in fact three different ways your child can receive support, which are detailed below.
Adults Disabled Since Childhood To be eligible for disability benefits as a disabled adult child, your child must be older than 18 and have a “qualifying disability” that began prior to reaching age 22. To be a “qualifying disability” under Social Security rules, the disability must meet all the criteria of a condition that is included in the Social Security Administration’s “Listing of Impairments” (commonly referred to as the “Blue Book”) or be equivalent in severity to a listed impairment, or an individual must be unable to perform any substantial work for pay because of his or her limitations. The disability must have lasted at least 12 months, be expected to last for at least 12 months, or could result in death. As a parent, you must also be receiving Social Security benefits due to retirement or disability or receiving benefits from your spouse who has died (survivor’s benefits). Your child must apply for Disabled Adult Children (DAC) benefits on a parent’s account. DAC benefits are also referred to as Childhood Disability Benefits by the Social Security Administration. If your adult child qualifies for Social Security disability, he or she can receive benefits as long as he or she remains unmarried. The benefits will end if he or she marries, unless he or she marries another disabled adult child. Low-Income Disabled Children Disabled children whose families have low income may be eligible for Supplemental Security Income (SSI). Childhood SSI is a program designed by the Social Security Administration (SSA) to help limited-resource families get the help they need for their disabled children. To qualify in this category, your child must be under the age of 18 and be either blind or disabled. The disability, according to Social Security requirements, must result in “marked and severe functional limitations or can be expected to result in death and has lasted or can be expected to last for a continuous period of not less than 12 months.” Children may be eligible for SSI disability benefits beginning as early as the day they are born up to the age of 18; there is no minimum age requirement. Winning a disability case is never easy, and winning SSI disability benefits for a child is no different. The first set of hurdles to overcome involves limits on income and resources. The SSA looks at all income sources available to the child, including parents’ income and stepparents’ income if the child is living with a stepparent and one natural or adoptive parent. The limit on parental assets is $2,000 for a single parent and $3,000 if there are two married parents. You will be required to present proof of income and resources to the SSA. In terms of income, SSA has a chart (http://bit.ly/ssagovbip) to help determine payable
amounts. The formula is complicated and involves both earned and unearned income limits; because of this, the simplest solution is to call Social Security. The second group of hurdles is proving the child’s physical or mental disability. SSA has a collection of medical conditions (the “Listing of Impairments” or “Blue Book” mentioned previously) that generally are severe enough to warrant the immediate awarding of benefits, so long as he or she meets specific criteria. However, proving that your child meets the criteria in the listings is complicated and seldom straightforward. If your child is approved for SSI benefits, the case will be reviewed occasionally to make sure that the child is still financially eligible and still has a disability. Once your child turns 18, his or her case will be reviewed again and assessed under adult disability criteria as part of an SSA process called “redetermination,” which has its own rules and complications. Social Security Auxiliary Benefits Many disabled workers who apply for Social Security Disability benefits believe that they are the only ones in their families eligible to receive benefits from SSA. This is not necessarily the case. In some cases, a disabled worker’s family members, such as their dependent children—whether disabled or not—may be able to receive benefits, as well. The benefits that are paid to family members are referred to as auxiliary benefits. If a parent, adoptive parent or stepparent is receiving Social Security retirement or SSDI benefits (or if a parent is deceased and was entitled to one of these benefits before he or she died), the child may be eligible to receive auxiliary benefits. Family members of those who receive SSI are not eligible for auxiliary benefits from the Social Security Administration. To qualify for auxiliary benefits, your child must be unmarried and under the age of 18. However, if your child is a full-time student enrolled at an elementary or secondary school, he or she can continue to receive benefits until either graduation or two months after turning 19, whichever comes first. Under auxiliary benefits, a child is eligible for up to 50% of the parent’s monthly benefit, subject to a family maximum. Qualifying for SSA children’s benefits can be a complex process with many rules and limitations. Although you are able to apply for SSDI benefits online, in order to apply for SSI or DAC benefits you need to call Social Security at 800-772-1213 to schedule a phone appointment. You may wish to consult with a Social Security disability benefits attorney or other professional to help guide you through the process.
Timothy Cuddigan has exclusively practiced disability law since 1994. He is the immediate past-president of the National Organization of Social Security Claimants’ Representatives (NOSSCR) and a past president of NAMI Nebraska. He is recognized nationally for his knowledge of Social Security disability law and regularly speaks to regional and national audiences on this subject.
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Who Is the Right Mental Health Professional for You? By Elena Schatell, NAMI Intern
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inding a mental health professional is one of the most important steps in starting on the path toward a successful recovery. As hard as it might be to acknowledge that you need help, the search for a specialist who fits your needs—someone who can serve as your ally—can be even more challenging. It can be overwhelming and intimidating, especially if you are new to the process, struggling with your condition or don’t know how or where to start. But finding that person is crucial to getting the care you need, getting the most out of your treatment and achieving your recovery goals.
treatment or care you need so that you know what type of professional to look for.
There are many steps that go into finding the right mental health professional. Here are some tips to guide you through your search for the right one for you.
Ask yourself what you need help with. Do you need a psychiatrist to prescribe and monitor medications? Maybe you have your medication under control, but need a clinical psychologist or mental health nurse to provide therapy and assessment. Maybe you need a social worker or peer specialist to provide counseling—someone who can assist you in finding housing, employment or paying for treatment. You may need holistic care from multiple professionals. It is also important to do some research into your condition, and the most effective treatment, and look for a provider trained in that area of focus. Once you have determined what type of professional you need, it is time to do a bit of research and asking around in order to find that person.
Think About Who You Are Looking For You may be seeking a mental health professional for a number of reasons, but it is important to understand what type of
Starting the Search There are a variety of ways to search for mental health professionals. Ask your primary care doctor or some of your
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other health professionals for referrals. If you are a student, contact your school’s counseling center. Ask family, friends and peers from support groups for recommendations. Spend some time searching online for providers in your area. Call your health insurance company to obtain a list of professionals who are covered under your plan. Kate Wichmann, a NAMI Northern Virginia NAMI In Our Own Voice presenter who has received treatment for 10 years, took a unique path in her search for a psychiatrist: She went to a psychiatrist’s book reading and asked him for a suggestion. For Wichmann, finding the right treatment provider was not just about asking, “Who is good, and who is bad?,” but rather stating, “This is what I’m looking for.” Be the Interviewer Once you have found a few professionals who seem like they could be a fit, make an appointment and prepare for the initial visit. Come to the session with a list of questions or topics you want to talk about. This will help you get the information you need to make the best decision for you. Ask about their training, experience and treatment approach. You may find that he or she specializes in certain disorders, populations or age groups. Seek out the professionals that have worked with others similar to you and have experience with your diagnosis. Having the right knowledge is key. The person might be a fantastic professional with an impressive resume and reputation, but not have the right experience and knowledge base. This part of the search can be frustrating. “I had at least one situation where I liked my doctor—he was trying really hard—but he didn’t have the needed knowledge for my complicated circumstances,” says Wichmann. Figure out how often you will meet and how your progress will be evaluated. Ask about office hours, session length, and having family attend appointments with you if that is something important to you. If you are concerned about being able to contact the professional outside of your appointment time, make sure to ask. One visit can be enough to determine whether the person is the wrong fit, but it is not necessarily enough time to determine whether it will be a working, successful fit. “You aren’t going to feel extremely comfortable divulging everything on the first session, but stick it out,” recommends Syeda Younus, a NAMI Northern Virginia program leader and a seven-year user of mental health services. After attending several sessions, think about how you feel and whether your needs are being met. Evaluating the Relationship “A good match is like a good relationship,” Younus says. In a strong, collaborative relationship with your provider, you should “feel comfortable conveying sensitive information and speaking openly.” There should be a sense of mutual care for each other and a feeling that this person is on your side. For Younus, a healthy relationship means that she feels at ease being herself, whether she is smiling, joking, crying or complaining.
In a valuable relationship with her provider, Wichmann says, “I feel like we’re equal partners. We both have a role.” Her provider is not above her looking down and lecturing her on what to do and how to feel. Instead, they are on the same level, as two members of a team. A great provider listens to the person not only as a patient, but as a person with a life story that goes beyond symptoms and diagnosis. Even though it can be difficult to trust your judgment when you are struggling, pay attention to your instincts and trust your gut reaction. Fanny Bowley, a NAMI program leader with 25 years of treatment experience, has relied on whether she feels a positive vibe from the professional after several appointments. When deciding whether the professional is worth keeping, Bowley also asks herself these questions: • • • • • • •
Do I feel safe, understood and comfortable? Do I feel free to express myself? Are my concerns being accepted and respected? Does my professional have my full confidence and trust? Is the professional meeting my recovery needs? Do I feel that I am making progress? Does this person believe in me and my capacity for wellness?
Bowley recommends keeping a log at home of how you are feeling and what you are thinking. If after a while the person doesn’t feel right to you, or you realize that the person doesn’t fit your needs or treatment style, you have the ability and power to find another one. “Own your appointment visits,” says Bowley. “It is your recovery and all about what you do and how you feel.” There are several red flags to look out for that these NAMI leaders spoke of, including that the professional is not listening, doesn’t seem interested in your story, dismisses your feelings or speaks to you condescendingly. “If I feel my voice is being disrespected and the person does not genuinely care about me, then I will immediately look for someone new,” Younus says. She adds that if she feels uncomfortable around the person, she might hold back information that is vital to receiving optimal care. Knowing You’ve Found the One “Having a good professional needs to be a priority,” says Wichmann. Finding this person can be hard, painful work, especially if you are dealing with a serious, long-untreated condition. It can also be difficult to prioritize the search when you don’t have much energy, enthusiasm or motivation. “However, once you get over the hump,” Wichmann says, finding someone with whom you can build “a successful, longterm relationship leads to rewarding, life-changing outcomes.” Remind yourself that you have the power to take charge of your recovery and well-being. You get to decide who is right for you and who you want to add to your support network. You hold the reins. Challenge yourself not to settle for good enough. Push for better. Don’t feel compelled to stay with a provider if you are not comfortable or don’t think this person has the necessary experience to help you reach your goals.
Winter 2016 | NAMI ADVOCATE | 11
“Your mental health professionals are an incredibly important part of your recovery,” says Bowley, “so pick the very best ones you can.” Just like any other relationship, you probably aren’t going to find the ideal professional on the first try. If your first attempt
does not prove successful, don’t give up. Finding someone who will be invested in your long-term wellness, through thick and thin, takes experimentation. Be persistent and always be honest with yourself. “If you do, this will probably be one of the most valuable relationships in your life,” Younus says, “and you can thank yourself for that.”
Mental Health Professionals: What Are the Differences? Primary Care Physicians Primary care physicians and pediatricians can prescribe medication, but it may be a good idea to consider a visit to someone who specializes in mental health care. Primary care and mental health professionals should work together to determine the best treatment plan for each person. Psychiatrists Psychiatrists are licensed medical doctors with medical and psychiatric training. They can diagnose mental health conditions and prescribe and monitor medications. Psychiatrists are also able to offer counseling and provide therapy. Some have special training in child and adolescent mental health or substance use disorders or geriatric psychiatry. Psychiatric or Mental Health Nurse Practitioners Psychiatric or mental health nurse practitioners with a master’s or doctoral degree and specialized training can provide assessment, diagnosis and therapy for mental health conditions or substance use disorders. In some states, they are required to work under a psychiatrist’s supervision. In some states, physician assistants or nurse practitioners are also qualified to prescribe medication.
provide individual and group therapy, and work with parents, teachers and school staff to ensure a healthy school environment. They may also participate in the development of individualized education plans (IEP) to help improve the school experience of the student with a mental health condition. Clinical Social Workers Clinical social workers have a master’s degree in social work and are trained to make diagnoses and provide individual and group counseling, case management and advocacy. Clinical social workers often work in hospitals or clinics or in private practice. Licensed, independent social workers (LICSW) have undergone an extra certification process. Counselors Counselors are trained to diagnose and provide individual and group counseling. Counselors may focus on different areas and can have titles such as Licensed Professional Counselor, Mental Health Counselor, Certified Alcohol and Drug Abuse Counselor, and Marital and Family Therapist. Pastoral Counselors Pastoral counselors are clergy members with training in clinical pastoral education. They are trained to diagnose and provide counseling.
Clinical Psychologists Clinical psychologists with a doctoral degree in psychology are trained to make diagnoses and provide individual and group therapy. Some may have training in specific forms of therapy like cognitive behavioral therapy or dialectical behavior therapy, along with other behavioral therapy interventions.
Peer Specialists Peer specialists have lived experience with a mental health condition or substance use disorder. They have often received training and certification and are prepared to assist with recovery by developing strengths and setting goals.
School Psychologists School psychologists with advanced degrees in psychology are trained to make diagnoses,
Social Workers Social workers (B.A. or B.S.) provide case management and inpatient discharge planning
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services, placement services and other services to support healthy living. Psychiatric Pharmacists Psychiatric pharmacists work directly with patients and caregivers to apply specialized clinical knowledge and skills to impact treatment outcomes. Psychiatric pharmacists are often doctoral and resident-trained to provide comprehensive medication management, which involves assessing the effectiveness of psychiatric medications, performing medication histories, and providing treatment strategies for a therapeutic plan.
Where to Start Your Search Your insurance provider is the first place to look for a mental health professional. If you have insurance, call your insurance provider or go to its website. SAMHSA Behavioral Health Treatment Locator provides a national database of lowcost, or sliding scale, mental health treatment centers. www.findtreatment.samhsa.gov. Psychology Today allows you to narrow down by speciality, accepted insurance, location, gender and other important traits. It also provides you a picture of the provider. www.psychologytoday.com American Psychological Association’s Psychologist Locator is very similar to PsychologyToday. You can also refine your search by selecting languages spoken or cultural sensitivity. However, the search is only for psychologists. www.locator.apa.gov
Y O U
A R E
N O T
A L O N E
Learning How to Be Open By Syeda Younus
W
hen I was 20 years old, I spiraled into a tremendous depressive episode after a traumatic breakup. I spent three days in bed and didn’t want to get out. Finally, I reached out for help. My swinging energy, persistent anxiety, depression and self-medication had already begun to disrupt my functioning. Looking back, I had already experienced paralyzing anxiety and loss of motivation by my senior year of high school, but never considered that it could reflect anything except my failure to thrive in response to stress. I blamed myself and continued to do so for many years. Receiving a diagnosis was unfortunately not the beginning of a complete recovery for me. I didn’t feel better, and only two years ago—six years after that initial diagnosis—did I summon up the courage to fully address the issue. I was already ashamed of having depression, and I just assumed my innate weak character was the cause of my perceived failure in life. I later realized that these beliefs about emotional difficulty being due to weak character were culturally learned. Fully treating my mental health would mean an acceptance of my condition, something I wasn’t yet ready for. I stayed on ineffective medication, suffered gravely and selfmedicated for five years. I was suicidal many times, dealing with thoughts of harming myself or going to sleep and never waking up. The thoughts terrified me, but they also comforted me with the idea of not feeling the pain any more. In the fall of 2013, I went to a counseling and psychiatric center with my concerns that maybe it wasn’t just depression, as my antidepressants weren’t working—not to mention that I wasn’t attending therapy, either. Making that move was the best decision I’ve made in my life. My diagnosis was reassessed, and I am now receiving effective treatment for bipolar disorder and anxiety. Since addressing this and beginning to accept it, and with help from an amazing day treatment program, I have stopped self-medicating and have been
stable and pursuing my goals wholeheartedly for about a year and a half. It isn’t always a rosy picture, but I have learned what I need to do to keep myself healthy, not some idealized version of myself who is exactly the same as her peers. I know that I need balance in my life, and that I need to take time to care for myself. I have learned the importance of sleep, diet and exercise, especially for those dealing with bipolar disorder. I have learned that I am not personally responsible for my disorder, but that I am responsible for how I react to it. More importantly, I am responsible for my own attitude toward it, and today, I choose acceptance. I don’t want to be ashamed and hide. I don’t want to be worried that people will think I’m “crazy” and distance themselves from me. Those who do aren’t worth having around, anyway. Too many people live in shame and fear and avoid seeking help because they are terrified of being different, terrified of being cast out. My family’s support, especially the support of my father, has been so critical for my recovery, along with the support, compassion and encouragement that I have received from my close friends. Although I had to be willing to help myself, I could never have made any progress in recovery on my own. Having a mental health condition can be tough, but more often than not it can be manageable. You can thrive as long as you address it, accept it and don’t shy away. Perceived and ill-informed connections between violence and mental illness that are heavily publicized often deepen stigma. Issues of stigma are especially prominent in the South Asian community (which is where I come from as a first-generation Bangladeshi American). In this community, character judgment is a natural pasttime,
and people’s reputations and obligations to family and society are more important than their own lives. They are also prominent in religious communities, where emotional and psychological struggles can be seen as spiritual possession or trials from the devil or from God. Everyone should learn more about clinical psychology and mental health, especially about the broken system here in the U.S. that is as much an exacerbating barrier as a reflecting result of stigma. People shouldn’t have to struggle unnecessarily, and it is likely you are close to someone who is dealing with some form of mental illness. I have bipolar disorder, and I am going public. I’m daring myself to not be ashamed. True to its name, my bipolar is a gift and a curse. There are many incredible people who live with bipolar disorder who have contributed immensely to the arts and other fields. These individuals showcase the strong connection between bipolar disorder and emotional energy and creative genius. You are amazing, and you are a gift. Syeda Younus is a volunteer on the NAMI HelpLine and a program leader for NAMI Northern Virginia. Winter Spring 2016 2015 | NAMI ADVOCATE | 13
If You’re Worried About Your Mental Health, Don’t Wait Sometimes it’s not easy to put a name to what you’re feeling, but you just know something isn’t right. It might be something as small as not wanting to go out anymore with friends, or something more noticeable like that you haven’t needed to sleep for the past few days. These symptoms could just be temporary, but if they seem different from what you’re used to experiencing, considering reaching out to someone you trust and ask for help. Growing up isn’t easy. Asking for help sometimes seems even harder. But know that there are other teens and young adults who are going through similar things to you, and although asking for help might not be fun, it ultimately makes a huge difference. We’ve created a road map to help you start a conversation and get help when you need it. This guide to getting started on the road to living well will keep you in the driver’s seat of your own life. You can hand out this infographic during a NAMI Ending the Silence presentation, share with a NAMI on Campus club or find it online visiting www.nami.org/infographics/gettingtherightstart. Looking for more? We have also created two other infographics on how to help a friend and getting the most out of treatment. Take a look at www.nami.org/infographics.
Getting the Right Start KNOW THE 10 COMMON WARNING SIGNS
1 2 3 4 5
Feeling very sad or withdrawn for more than two weeks Seriously trying to harm or kill oneself or making plans to do so Severe out-of-control, risk-taking behaviors Sudden, overwhelming fear for no reason Not eating, throwing up or using laxatives to lose weight; significant weight loss or weight gain
6 7 8 9 10
Seeing, hearing or believing things that are not real Repeatedly using drugs or alcohol Drastic changes in mood, behavior, personality or sleeping habits Extreme difficulty in concentrating or staying still Intense worries or fears that get in the way of daily activities
WORRIED? TELL SOMEONE A FAMILY MEMBER CLOSE FRIEND TEACHER OR PROFESSOR COUNSELOR OR COACH FAITH LEADER
WHAT TO SAY
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ARE NOT ALON E YOU
1 in 5
youth and young adults lives with a mental health condition
with a mental health condition
TEACHER OR PROFESSOR COUNSELOR OR COACH FAITH LEADER
WHAT TO SAY I haven’t felt right lately and I don’t know what to do. Can I talk to you about it?
I’m having a really hard time lately, will you go with me to see someone?
I’m worried about stuff that’s going on right now, do you have time to talk?
WHAT TO DO
Getting help early for mental health matters in keeping your life on track.
Your first stop is your primary care doctor, to rule out other physical health conditions
Be honest about what you’re feeling and be clear about what you want
Ask for help finding a therapist or mental health specialist that works for you
KEEP IN MIND CONNECT WITH OTHERS
It can take a while to get an appointment with a specialist.
Lots of youth and young adults live with a mental health condition. You can connect with them at OK2Talk.org. Also, look in your community for peer and support groups and you will discover that you are not alone.
If you need to see a specialist right away, speak up to get an appointment sooner.
Follow Us! NAMI
NAMIcommunicate
NAMIcommunicate
www.nami.org
Winter 2016 | NAMI ADVOCATE | 15
A Common Struggle, an Uncommon Leader
How Patrick Kennedy Is Helping Change the Way the U.S. Views Mental Health By Brendan McLean, NAMI Communications Manager ©NBC News
O
ne night in early May 2006, Patrick J. Kennedy, a former U.S. Representative for Rhode Island’s first congressional district and nephew of the late President John F. Kennedy, crashed his green Ford Mustang into a police barrier in front of the U.S. Capitol. Disoriented from having taken a combination of prescribed medications, he doesn’t remember much of that night. The next day, he was scheduled to meet with the Campaign for Mental Health Reform, a national partnership of organizations representing millions of people with mental disorders, their families, service providers, administrators and other advocates. Kennedy had long been interested in mental health and substance abuse policy—as was his famous uncle, who signed the Community Mental Health Act into law in 1963—but his political career had shifted in a personal way toward a heightened focus on mental 16 | NAMI ADVOCATE | Winter 2016
illness and addiction: He would come to use his own story as a key component of his message. When Kennedy first went public with his own substance abuse and mental health issues, the media reached out to then-NAMI Deputy Executive Director Bill Emmet. Emmet’s response to the media was simple, straightforward and, above all, brutally honest: “Saying Patrick has nothing to be depressed about is like saying Patrick has no reason to have heart disease, no reason to have cancer.” Emmet had had a history with Kennedy dating back to Kennedy’s days in the Rhode Island legislature; Emmet is now the executive director of the Kennedy Forum, whose mission is to set a new standard for the future of mental health care in the U.S. Kennedy and NAMI have continued their relationship since that time. In 2011, Kennedy was awarded NAMI’s Distinguished Service Award. In
2014, he spoke at the NAMI National Convention in Washington, D.C., and implored those attending—and those watching on TV—that it was time to take action.
“Saying Patrick has nothing to be depressed about is like saying Patrick has no reason to have heart disease, no reason to have cancer.” Throughout his new book, A Common Struggle, Kennedy chronicles how mental health influenced both his personal
life and his career. He takes the reader through his own personal mental health journey living with depression, bipolar disorder and substance abuse while also highlighting the history and evolution of the mental health system. Kennedy was kind enough to respond to some questions by email about the current state of the mental health system, his book, and how NAMI members can make the biggest impact in the 2016 election. What is the most effective way for NAMI members to have an impact on mental health policy? NAMI members can make a big difference by contacting elected officials on the state and federal level—in your state house and in Congress in
Washington, D.C. In-person meetings make a strong impression, including meetings with legislative staff. You can meet with your member of Congress when he or she is in the district during a congressional recess. Any kind of contact shows that you care about transforming mental health care in America, whether it’s through calls, letters or emails. NAMI is made up of many devoted advocates, and they often find themselves in places where they may be able to speak to elected officials. Do you have any advice on how best to influence elected officials? Sharing your personal story with mental illness or addiction—either your own or a loved one’s—is huge. Many elected officials don’t know what it’s like to live with bipolar disorder
or opiate addiction. What is it like to have a daughter who is suicidal, but the insurance company won’t pay for the residential care that her doctor has ordered? How do you help a brother who has returned from Iraq with PTSD and his insurer has limited the number of therapy appointments? We have a duty to share our lived experiences with brain diseases and educate policymakers. There are many relationships that can be forged between NAMI members and leaders in their communities. Are there any relationships that are particularly important or ones that are often ignored and should be given more attention? Elected officials respond to constituents— the people they are elected to serve. In addition to speaking out as an individual, it is helpful to build
Right: Patrick with his father at a campaign appearance during his father’s 1982 Senate race. Bottom Right: Patrick speaks at a parity rally in Washington, D.C., in 2008. Below: The cover of A Common Struggle, in which Patrick details his personal struggles with mental health and the nation’s battle for mental health policy reform.
Winter 2016 | NAMI ADVOCATE | 17
“Sharing your personal story with mental illness or addiction—either your own or a loved one’s—is huge. Many elected officials don’t know what it’s like to live with bipolar disorder or opiate addiction.”
Patrick speaking at the Kennedy Forum in 2013. relationships with community leaders who can speak on behalf of groups and provide a particular perspective, such as business leaders, doctors, mental health providers, clergy, local officials like city councilors and mayors, and others. Transforming mental health is an issue that cuts across party lines. When building relationships, it’s important to remember that both Democrats and Republicans want to get better care and improve mental health policies to help their loved ones. What do you believe are the greatest dangers to making progress in mental health policy reform? What do you think are the most significant public policy issues regarding mental health that have yet to be addressed? My father, Sen. Ted Kennedy, and I were the lead sponsors of the Mental Health Parity and Addiction Equity Act of 2008, which was passed with bipartisan support and signed into law by President George W. Bush. The Parity Act was intended to outlaw discrimination in insurance coverage. It requires illnesses of the brain, like alcoholism and depression, to be treated
the same as diseases in the body, like cancer and diabetes. We have to finish the job by making enforcement of the Parity Act our top priority. It’s time for state and federal regulators to end the secrecy that allows insurance companies to discriminate and deny coverage for brain diseases. Federal agencies must use the legal powers they already have to demand detailed disclosures showing how insurers make decisions to approve or deny coverage for all medical, surgical and mental health care. Making this information transparent on a state-by-state and planby-plan basis is the only way we will ever know whether diseases of the brain and body are being covered equally. To see where your state stands on parity, please visit www.paritytrack.org. Some have criticized your decision to disclose so much about your family’s health in your book, A Common Struggle. Why do you think it’s important to openly discuss addiction and mental health in the way that you did? If there’s one thing I’ve learned, [it’s that] we will never heal this country until we break the silence and end the
NAMI is a proud member of NOW Campaign. Through the campaign, Americans are rallying together to engage our presidential candidates, policymakers and business leaders to create lasting change in the way that mental health and addiction are viewed and treated in our health care system and all parts of our society. To learn more, go to www.nowcampaign.org.
18 | NAMI ADVOCATE | Winter 2016
shame, stigma and discrimination that surrounds brain illnesses. One in five adults in the United States—almost 44 million people—experiences mental illness in a given year. The only way to find each other for support and to build a political movement is to be “out” about our common struggle. What could someone do today to help improve the mental health system? 2016 is an election year. NAMI members should get involved with the NOW Campaign and ask our nation’s policymakers, business leaders and presidential candidates to take the NOW pledge, which is based on six proven and cost-effective strategies that will transform mental health and addiction in America. Go to www.nowcampaign. org to learn more. Let this be the year that we take not small steps, but giant leaps toward revolutionizing our mental health system. All photos, except for the NBC News photo on page 16, are courtesy of Patrick Kennedy.
Finding a More Effective Way to Treat Schizophrenia By Dr. Ken Duckworth, M.D., NAMI Medical Director
O
n Oct. 20, 2015, Maggie, a 20-year-old nursing student, bravely stepped up to the podium in the Rayburn House Office Building at a congressional briefing organized by the National Institute of Mental Health (NIMH) and NAMI. She then proceeded to share her personal experience of living with schizophrenia to the congressional staffers, colleague organizations and media. She was there in part to announce the release of the most highly anticipated research on mental health in years. The research consisted of two studies as part of NIMH’s RAISE research program. RAISE, which stands for Recovery After an Initial Schizophrenia Episode, is a groundbreaking initiative looking at how best to treat people with early psychosis. One study, the RAISE Early Treatment Program (RAISEETP), was published in the American Journal of Psychiatry and led by Dr. John Kane. It begins to provide an answer to the fundamental question, Can we do better for people early in the course of living with psychosis in real-world settings? The answer appears to be a clear “yes.” To quote Maggie, who participated in a related trial, it made her “want to not just live … but also, want to live a fulfilling life.” RAISE-ETP compared coordinated specialty care to regular community-based treatment. The goal was to determine whether this new treatment approach made a difference for individuals with early psychosis. The study observed 223 individuals who were provided with Coordinated Specialty Care and 181 individuals who were in regular community care. The Coordinated Specialty Care sites trained existing community mental health workers in these evidence-based treatments. The study looked at quality of life, symptom improvement, and involvement with work and school during the first two years after the study began. It found that people receiving coordinated specialty care had much better results than those receiving typical community-based care. During the briefing, Dr. Lisa Dixon, who led the RAISE Implementation and Evaluation Study (RAISE-IES), explained that her study had similarly positive results, with participant hospitalizations down more than 50% and participants either in school or working up nearly 40%. Dr. Dixon discussed coordinated specialty care’s success in engaging participants and improving their overall quality of life. Findings from Dr. Kane’s RAISE-ETP study revealed that the impact of coordinated specialty care intervention was much
From left to right: NAMI Executive Director Mary Giliberti, Dr. Robert Heinssen, Dr. John Kane, Dr. Lisa Dixon, Maggie’s mother and Maggie. stronger if the person had had psychosis symptoms for less than 74 weeks. This shows how critical it is to make access to services easier, and to improve awareness and attitudes toward people seeking help if they have symptoms of psychosis. This is consistent with previous findings that show that it matters how soon a person gets help: There is an ideal window of time in which to get the best services to people with early schizophrenia. I volunteer at the Prevention Recovery of Early Psychosis program (PREP) at Massachusetts Mental Health Center. The program is welcoming and has many of the things that are in the RAISE study: early involvement of families, and support for work and school. PREP always has a waiting list, even though it does not advertise. As much of a privilege as it is for me to be there, I know that PREP and programs like it need to be proven to be better models to encourage more funding and replication. RAISE showed that the coordinated specialty care services made a real difference in the following two years after the first signs of psychosis. Now, what we need to find out is whether these services improve outcomes over a longer period of time. For example, do they help to keep people at a higher level of functioning in school or work over a decade? It would also be important to understand whether these services can help to save money over time by reducing hospitalizations and the need to go on disability. Finding ways to provide funding for these more comprehensive services will also be crucial. We salute NIMH for conducting this research. We look forward to the continued great collaboration efforts that have taken place as the field tries to understand what works and in what stage of illness. NAMI members work every day to improve attitudes, and this study gives us the power to push for more services like this. To learn more about these services, visit www.nami.org/fep. This model holds lots of promise. We need to continue to advocate for these kinds of services, and we also need better treatments and services for people living with schizophrenia who did not have the opportunity.
Winter 2016 | NAMI ADVOCATE | 19
What’s Next for RAISE? By Susan T. Azrin, Ph.D., Amy B. Goldstein, Ph.D. and Robert K. Heinssen, Ph.D., ABPP
I
n a randomized control trial involving 404 clients with firstepisode psychosis (FEP) in 34 community clinics, those in coordinated specialty care (CSC) experienced greater improvements in quality of life, symptoms and school or work participation, as compared to typical community care for FEP. Clients who initiated CSC within 18 months of illness onset derived significantly greater benefit from CSC than those who entered treatment later.1
The number of community-based CSC programs in the U.S. has increased dramatically since the launch of RAISE, for a number of reasons. First, in 2014 and 2015, federal legislation allocated an additional $24.8 million for early intervention services in serious mental illness, including psychotic disorders. Second, the RAISE projects produced an abundance of user-friendly resources to speed implementation of CSC programs, available at no cost on the NIMH website (www.nimh.nih.gov/RAISE). Combined with CSC technical assistance activities jointly sponsored by the Substance Abuse and Mental Health Services Administration and NIMH in 2014-2015, these resources have been widely used to develop new CSC programs. Despite these advances, additional research is needed to maximize the
effectiveness and reach of CSC. First, we need data on long-term outcomes after discharge from CSC. To fill this gap, the RAISE Early Treatment Program (RAISEETP) is following its study participants for five years to assess the durability of the positive outcomes observed at 24 months. Second, the 18-month duration of untreated psychosis (DUP)2 found in the RAISE Early Treatment Program far exceeds the quality standard of a maximum 12 weeks DUP. This is especially concerning given that CSC was much more effective when DUP was shorter. We need innovative strategies for reducing DUP. NIMH’s initiative Reducing the Duration of Untreated Psychosis in the United States3 advances this line of research. Since 2013, NIMH has funded eight studies to identify factors contributing to longer DUP and to develop and test strategies for reducing DUP, including early psychosis public awareness campaigns, training clinicians to identify early psychosis, and social media approaches. Third, people with schizophrenia die 28 years prematurely, largely from preventable medical conditions such as heart disease, diabetes and cancer.4 In people with FEP, the health risks that contribute to premature mortality, such as high rates of smoking, high blood
pressure and dyslipidemia, are evident in young adulthood, though are seldom treated.5 In response, NIMH launched the initiative Improving Health and Reducing Cardiometabolic Risk in Youth with Serious Emotional Disturbance and Young Adults with Severe Mental Illness in 2015 to support studies on practical strategies for preventing and reducing cardiometabolic risks in these populations. Going forward, NIMH plans to leverage the expanding network of CSC clinics to establish a learning health care system for FEP in the U.S., further aligning science with best clinical practices. Disclaimer: The contents are solely the responsibility of the authors and do not necessarily represent the views of National Institute of Mental Health or the U.S. Department of Health and Human Services. Susan T. Azrin, Ph.D. is chief of the Primary Care Research Program in the Division of Services and Intervention Research at NIMH. Amy B. Goldstein, Ph.D. is the associate director of Prevention Research in the Division of Services and Intervention Research at NMIH. Robert K. Heinssen, Ph.D., ABPP is director of the Division of Services and Intervention Research at NIMH.
1 Kane J.M., Robinson D.G., Schooler N.R., Mueser K.T., Penn D.L., Rosenheck R.A., et al., “Comprehensive versus usual care for first episode psychosis: two-year outcomes from the NIMH RAISE Early Treatment Program,” American Journal of Psychiatry 2015; Oct 20 epub ahead of print.
2
Addington J., Heinssen R.K., Robinson D.G., et al., “Duration of Untreated Psychosis in Community Treatment Settings in the United States,” Psychiatr. Serv. 2015; 15:appips 201400124.
3
See PAR 13-188 at grants.nih.gov/grants/guide/pa-files/PAR-13-187.html and PAR-13-187 at grants.nih.gov/grants/guide/pa-files/PAR-13-188.html.
4
Olfson M., Gerhard T., Huang C., Crystal S., Stroup T., “Premature Mortality Among Adults with Schizophrenia in the United States,” JAMA Psychiatry 2015; 72(12):1172-1181, doi:10.1001/jamapsychiatry 2015.1737.
5 Correll C.U., Robinson D.G., Schooler N.R., Brunette M.F., Mueser K.T., Rosenheck R.A., Marcy P., Addington J., Estroff S.E., Robinson J., Penn D., Azrin S., Goldstein A., Severe J., Heinssen R., Kane J.M., “Cardiometabolic Risk in First Episode Schizophrenia-Spectrum Disorder Patients: Baseline Results from the RAISE-ETP Study,” JAMA Psychiatry 2014; 71(12):1350-1363.
20 | NAMI ADVOCATE | Winter 2016
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This study enrolls eligible participants from across the USA. Travel arrangements are provided and costs are covered by NIMH (arrangements vary by distance). After completing the study, participants receive short-term follow-up care at the NIH while transitioning back to a provider.
NIH mental health researchers are evaluating rapid antidepressant effects in the brain. This inpatient study is enrolling eligible adults, ages 21 to 65, who are free of other serious medical conditions, for 4-7 weeks as research participants. Procedures may include tapering off antidepressants, a medication-free period, two infusions of alcohol and one infusion of low-dose ketamine (an FDA-approved anesthetic), and two brain scans (MRI).
Call about eligibility: 1-877-MIND-NIH (1-877-646-3644) TTY: 1-866-411-1010, email: moodresearch@mail.nih.gov The study is conducted at the NIH Clinical Center in Bethesda, MD. There is no cost to participate and compensation is provided.
www.nimh.nih.gov/JoinAStudy www.clinicaltrials.gov Protocol No. 14-M-0085
Winter 2016 | NAMI ADVOCATE | 21
Ingrid Herrera-Yee and her family.
Service in Silence
Military Family Mental Health By Ingrid Herrera-Yee, NAMI Manager of Military & Veterans Policy and Support
O
ur country has been at war for over 14 years. The brave people who make up our military force have been stretched thin, deploying over and over again in defense of our freedom. The cycles of combat have been so long and so frequent that 13,000 service members have spent the equivalent of three to four cumulative years at war in Iraq or Afghanistan. The mental health struggles and suicide rate among military service members are testaments to the price that they have had to pay and the sacrifices that they continue to make. We lose over 22 veterans a day to suicide. Even for those who don’t die by suicide, there is still a heavy cost. Many Iraq and Afghanistan veterans face a life of disability due to the physical and psychological injuries that they sustained as a result of their service. It is estimated that at least 970,000 veterans have some degree of officially recognized disability as a result of these ongoing wars. Many more live 22 | NAMI ADVOCATE | Winter 2016
with physical and emotional scars despite their lack of disability status. Our nation’s heroes have sacrificed their physical and emotional health to protect our country. The statistics are sobering. There is no question that our heroes need our support. But regrettably, there are others who often get lost in the shuffle. There are those who serve who are seldom talked about. It is those who serve beside our service members—military families—who are often forgotten. It is the military families who often serve in silence. The Costs of War for Military Families Military families have also paid a high price for the past 14-plus years of war. They are not found on the battleground. They are not facing enemies and coming home with physical and psychological wounds. Instead, they are left behind to worry while their loved ones serve in harm’s way. Over and over again, they worry. They wait. They also experience mental
health issues at an alarming rate. Despite the fact that there isn’t a robust research database on military family mental health, the research that does exist is compelling. Military Spouse Psychological Health Multiple stressors characterize the lives of military spouses. Sustaining a family in the face of frequent moves, distance from personal networks, the demands of military culture and the deployment of a spouse require strength, flexibility and resilience. Many military spouses successfully manage the stress of maintaining a family during deployment. However, in families facing additional hardships, spouses are likely to be more taxed and less resourced. This makes them even more vulnerable to mental health issues.
Many Iraq and Afghanistan veterans face a life of disability due to the physical and psychological injuries that they sustained as a result of their service. Many studies highlight the connection between deployments and high levels of stress, anxiety, depression and even suicide risk for military spouses. For example, a 2008 study found that military spouses developed mental health concerns, including suicide, at the same rate as service members. A 2010 study found that the spouses of service members who were deployed for up to 11 months visited military health clinics more frequently and received mental health diagnoses at rates between 18-25% higher than spouses of military service members who were not deployed. As with service members, the psychological health of military spouses can be just as at risk. Military spouses are faced with the dayto-day challenges of running households as single parents, all the while worrying about their spouse being in potential danger. This can contribute to poor mental health outcomes. Additionally, there are those spouses who are called upon to care for their injured or ill service member spouse. Military spouses in that role report higher levels of stress, depression and anxiety. Often, the spouse is focused on the service member’s well-being and will disregard his or her own health—with sometimes suicidal outcomes. While no formal research has been done to track this problem, anecdotal evidence shows that suicide is a notable issue for spouses, military children and teens.
children have been exposed to the wartime deployment of a loved one in the past 10 years, sometimes multiple deployments. Many service members have returned from combat deployments with symptoms of PTSD, depression, anxiety, substance abuse and traumatic brain injury (TBI), challenging the mental health and well-being of their children. Repeated deployments create prolonged periods of uncertainty and an increased sense of danger on the part of the children. Studies bear out that children of deployed parents of all ages have higher rates of anxiety and depressive symptoms, and deal with academic problems more frequently. A 2015 study found that military-connected teens reported higher rates of suicidal behavior than their nonmilitary-connected peers. Even when a parent is not deployed, other issues unique to military life can affect military children. A lack of support and isolation have been found to contribute to feelings of depression or anxiety in military children. In addition, frequent moves can make it difficult for them to form longterm friendships, and they often fall victim to bullying. A Culture of Fear of Seeking Help Further exacerbating the mental health struggles of military spouses and children is the fact that there is still stigma associated with seeking help for mental health issues within the military community, and a culture of fear persists. There are still some who choose not to use on-base and militaryaffiliated mental health providers due to the fear that it could end up harming the service member’s military career. Thankfully, there is a significant and growing movement among military leaders to support open and honest communication around seeking help for mental health issues. Unfortunately, it does not often trickle down to individual service members and families. Every branch of the U.S. military has its own version of the saying, “We recruit a soldier, but we retain a family.” The implication is that a healthy family unit is integral to service member readiness, retention and performance. There has been solid research conducted on service members and veteran mental health, which will hopefully continue. But there is significantly less knowledge around the family members left behind. As service members and their families who have seen unprecedented rates of deployment now prepare for a potential slowing of combat deployments, advancing our awareness and understanding of the mental health challenges that military families face should be a priority. A cultural change around mental health, much like the one that is needed within the civilian world, needs to happen in military culture so that military families and service members can get the care that they need, and so that nobody is left to serve in silence.
Military Child Psychological Health The wars in Afghanistan and Iraq have been challenging for the children of service members as well. Up to 2 million Winter 2016 | NAMI ADVOCATE | 23
My Journey to Become a Mental Health Professional By Joni Agronin
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ecoming a mental health practitioner has been a lifelong dream of mine, but I had often questioned my ability to accomplish it. Up until six months ago, I worked at the national office of NAMI. What I learned in the year that I was there was that there is dire need for passionate, culturally competent and informed mental health providers—and it convinced me to finally take the leap and attend graduate school this past fall. I’m finishing up my first semester at North Carolina State University in its Clinical Mental Health Counseling program. I have taken classes on different theories and techniques of counseling, and on complex family issues, and I’ve attended workshops on evidence-based therapies. So far, the class that struck me the most was my community mental health class, in which everything I learned during my time at NAMI has been reinforced. This class exposed me to the real-world challenges in finding access to care. I had to find a mental health provider covered on my own insurance plan and locate a hospital where I could take a loved one in a mental health crisis, then write about my experience.
I already knew the statistics: Only 60% of adults with a mental health condition received treatment in the last year despite the fact that half of all lifetime cases of mental illness begin by the age of 14. These statistics were the reason why I wanted to contribute directly on the ground. I worked on articles and campaigns to advocate for mental health parity and comprehensive legislation while at NAMI, but it was an entirely new experience for me to put myself in the shoes of the individuals actually looking for support. Finding treatment in my area was not easy. I became confused just trying to navigate what was covered under 24 | NAMI ADVOCATE | Winter 2016
my own insurance plan. Even when I was able to find a counselor for psychotherapy, it was increasingly difficult to find a psychiatrist who could provide medication, a hospital for a mental health crisis, or any kind of inpatient treatment.
learned about the cost and inaccessibility of treatment, I knew that I wanted to work at an agency that provided community mental health care to anyone at an incredibly low cost, regardless of whether or not they had mental health insurance.
According to The Kaiser Family Foundation in North Carolina, only 52% of the mental health needs in the state are being met. This designates the state as a mental “health professional shortage area.” Is this problem due to the lack of mental health providers, or simply the inability of those in need to actually connect with or afford the mental health providers in their area? My guess is that it is a combination of the two.
I’m incredibly fortunate that my advisor and professor, Dr. Marc Grimmett, shares my passion for providing community mental health. He has been working for years to build a community mental health center in Raleigh. He wants to create a place where individuals and families will be able to come and seek treatment at low costs, while also providing an opportunity for his counseling students to practice and learn.
I know it will be a difficult experience at times, but I am elated for a chance to do the work I have wanted to do for so long.
The work Dr. Grimmett has put in for years is finally coming together, as NC State’s Community Counseling, Education and Research Clinic (CCERC) is now up and running. The clinic is located in the Wade Edwards Learning Laboratory (WELL), a youth center in Raleigh. Teens who belong to the WELL can receive treatment for free, and all other community individuals can receive treatment on a sliding-scale cost based on what they are able to pay.
When I made the decision to become a mental health provider, I thought I would feel better. I thought I would feel like I am contributing to the cause on a more personal level—like I could directly treat the people I was interacting with at NAMI who expressed their desperate need for help. I would be one more professional able to provide care in an area seriously lacking in resources. Only a few months into my program, I’m realizing that even as a provider, my clients will have to jump through hoops just to see me. Starting in January, I have the opportunity to complete a clinical internship and start seeing clients while under the supervision of licensed professionals. My program provides the opportunity to explore and interview at any mental health agency or practice in the area. After everything I had
I have chosen to complete my clinical internship at CCERC. During my time there, I will have to earn 100 clinical hours, lead group therapy sessions and assist with center outreach. The clinic is still a work in progress, but I am thrilled to be able to contribute. I know it will be a difficult experience at times, but I am elated for a chance to do the work I have wanted to do for so long. Joni Agronin is a student at North Carolina State University in its Clinical Mental Health Counseling program. In the coming months, she will be sharing her experiences and speaking with experts about community mental health centers on the NAMI blog at www.nami.org/blog.
Why Does a Diagnosis Change? By Dawn Brown, NAMI HelpLine Manager
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ental health conditions are very personal and unique to each individual. Having the right diagnosis can help you get the most effective treatment and services. Therefore, it’s understandably frustrating and confusing when a diagnosis changes or new diagnoses are added. On the NAMI HelpLine (tel: 800-950-6264), we hear from thousands of people each year, and it’s common to get questions like, “Every time I see a new doctor, I get a different diagnosis. Why does my diagnosis keep changing?,” or, “I’m confused. They’ve said I have depression, bipolar, PTSD and now schizoaffective disorder.” Fortunately, there are things you can do to help better understand your diagnosis, understand a changing diagnosis and clear up any confusion. A diagnosis is meant to represent a set of symptoms, progression of the condition, prognosis and, most importantly, help in deciding what will be the most effective treatment and support plan. To determine a diagnosis, mental health professionals turn to the Diagnosis and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), the American Psychiatric Association’s treatise for classifying and diagnosing psychiatric conditions. Having an authoritative book of diagnoses sounds like it should make things easier, but there are many variables. For one, the DSM-5 has over 300 separate classifications, which must be read, researched, understood and applied. If the symptoms change or if a practitioner hears them differently, the diagnosis can then change. Since laboratory tests, biopsies and imaging tests can’t be used at this time to diagnose a mental health condition, each professional is left to observe and interpret symptoms themselves. This makes it common for different mental health professionals to provide different diagnoses. This frustration and confusion can even cause a person to lose confidence in their care providers. But being realistic, and considering that every single person is different, you end up
with more than a handful of possibilities. This makes getting it “right” the first time unusual. Like you, your circumstances are always changing. In other words, that second time or third time you go to see that second or third mental health professional may in fact be the first time you go under your current circumstances.
Since laboratory tests, biopsies and imaging tests can’t be used at this time to diagnose a mental health condition, each professional is left to observe and interpret symptoms themselves. Take this example: A child has symptoms that are diagnosed as depression. As she enters adolescence, its accompanying rapid growth spurt and hormonal and emotional ups and downs, coupled with any high-risk behavior, can trigger or signal changes in mental health condition. Depression might begin to look like bipolar disorder if she has a manic episode after the first depressive episode. This is a common apparent misdiagnosis that occurs as the condition had not yet fully revealed itself when a child is younger. Entering adulthood, a young man or woman—having successfully managed depression for years—moves away to college and experiences his or her first episode of psychosis. The person’s diagnosis and treatment will need to be reevaluated. One of our HelpLine Associates, Loren, had something like this happen to him when he went away to college in the 1980s: “My schizophrenia acquired a mood (mania) component when I fell in love during class. Since I was feeling manic instead of depressed, my behavior on campus became inappropriate. My doctor recognized schizoaffective disorder and prescribed
lithium.” In this way not all changes in diagnoses are problematic; sometimes our symptoms do change. Older adults between 40 to 65 years of age can experience significant changes in emotional and physical well-being brought on by menopause and/or deteriorating health, which then affects their diagnosis and treatment. For example, one woman, concerned about her aging mother, called asking for more information on schizophrenia, but her mother may in fact have been experiencing the onset of dementia. “My mother is 75 years old. She’s always been diagnosed with depression and OCD,” she said, “but now, she’s become really paranoid about family members stealing photos and jewelry. She also believes the phone is tapped. Isn’t she too old to be getting schizophrenia?” Getting a good evaluation can help; the diagnosis of cognitive decline can be reliably assessed by a neuropsychologist. You can help ensure the effectiveness of your treatment, or the treatment of a loved one, by providing complete and accurate information about symptoms, length of time of onset and full treatment history. In addition, knowing about your family history, substance use, medical problems and stressful life events is also important in getting an accurate diagnosis. Keeping records on medications, side effects, treatment programs and hospitalizations is also very helpful, but it’s not an easy task. “Sometimes it feels like a part-time job keeping track of his diagnoses, symptoms, medication and different treatments,” one mother calling about helping her son told me. Neurobiology and genetics may one day offer definitive diagnoses and treatments tailored for each individual. Until then, it is important to remember that we are each unique and much more than any label. We can all experience our best recovery by working closely with our mental health care providers.
Winter 2016 | NAMI ADVOCATE | 25
Touched with Fire Offers a Look into the Often Difficult Relationships Within Families By Brendan McLean, NAMI Communications Manager
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aul Dalio’s new film, Touched with Fire, walks a tightrope. A tightrope strung between two platforms 50 feet in the air. And on that tightrope, there are two characters: Carla and Marco. Sometimes they work with one another to reach the platform at the end. At other times, it seems as though each is trying to throw the other off. Set to be released on Feb. 12, Touched with Fire takes Dalio’s personal experiences with bipolar disorder and uses Carla, played by Katie Holmes, and Marco, played by Luke Kirby, as muses to contrast the different emotions he has felt toward bipolar in his life. The tightrope is figurative, but the life-anddeath nature of balancing the extreme emotions of bipolar is not. The movie itself put me on edge as I watched; it made me uneasy. At times, it seemed as though bipolar was being romanticized, only to have that person ultimately come crashing down. For example, there is one scene in the film related to the threat of suicide that may trigger some viewers. One of the biggest themes throughout the film is the relationship that the two main characters must manage with their parents. Not-so-spoiler spoiler: Neither is able to navigate their
relationship perfectly. The glimpses into each person’s actions are what I ultimately found most captivating and thoughtprovoking. I spoke with the director of the film to shine some light onto his story and the film’s story. You have a personal experience with mental health, whereas the actors in the film might not have. How did you work with them to create something that you feel was ultimately a true representation? The love story between these two characters was definitely a metaphor for my love-and-hate relationship with bipolar: the way they bring out the romance in each other, but also the devastation in each other, and the way they have to reconcile those two things. The journey that I went through that I think a lot of people with bipolar go through is that you get it and you’re lost, but then you easily romanticize that fire ultimately to your own destruction. It ultimately takes most people repeated devastations to let go of the mania. What I wanted to do was have that journey of how they learned that they can have real meaningful emotions and sustain them. My hope is that people are able to watch the film and see where Marco and Carla
Left to right: Bruce Altman, Christine Lahti, Katie Holmes, Luke Kirby and Griffin Dunne. Photo courtesy of Touched with Fire.
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make mistakes and know that they don’t have to make them themselves. How has your family played a role in helping you maintain balance in your life? The biggest thing that my family did—and it’s one of the hardest things—is the constantly talking me out of suicide when I was in a depression. It was very draining on them, but they really struggled to try and give me hope. The best a family can do is to give hope to their family member, but ultimately it has to come down to the individual. The loss of hope—in my own experience—was the only time I had thoughts of suicide. If I had any hope at all that there was any chance, any possibility that I could be happy and full of creativity, and even better than I was before, which now is the case, I would fight. What was your goal with the film? The biggest thing I was trying to do with the film—for the family members and the main characters—is show a truthful situation where there are well-intentioned parents. And the truth is, even well-intentioned parents, they don’t always know what to do. They are dealing with a situation that there is no perfect guidebook for. My hope was to create characters that the audience could see themselves in. If there were any wellintentioned parents in the audience, that they could not only see themselves in the parents, but also through their children’s eyes. That they could at least be able to understand their children enough so they could understand where they are coming from so that they can communicate with them. The title of your film is taken from Kay Refield Jamison’s 1996 book, Touched with Fire, which explained how many of the greatest artistic minds in history had bipolar disorder. Can you tell me about how she inspired you? It’s easy to be ashamed of something that you’re told is a genetic defect. You feel like you’re a mistake. That’s a hard thing to swallow for someone who’s found a place based on how they’ve come to view themselves. For me, when I came across the book Touched with Fire by Kay Jamison, it completely changed my whole perception of myself. Maybe this isn’t just a defect; it could be a gift that has devastating consequences if you don’t handle it right, but maybe there is something purposeful in this. How does being labeled bipolar affect the way you view yourself? Bipolar wasn’t always seen as a defect; it was often seen as a gift because it tapped into something that most people couldn’t tap into. Framing it that way creates a very different story. There can be a fear in doctors and in people to romanticize it because they are afraid people will say, “I can go off my meds.” That’s a legitimate fear, but I don’t think you have to have that fear, if it can be conveyed in the right way.
If people can understand that you can have all the magic of your gift and you can have it in a more potent and rich, powerful way if you find a balance with your medication and other healthy habits, then it’s something you can fight for. If the story can change, it would be much more helpful. In addition to medication, what else do you do to keep yourself in control? That took a lot of time, and that’s important for people to know so that they don’t feel like they can rush it and get there. Bipolar is like a pendulum: The more recent the swing, the more quickly it wants to swing again, and the consequences of that swing are devastating. I used to smoke weed, I used to drink. Now I won’t even take a sip of alcohol to make a toast. I go to bed at 10 p.m. every night. I go for a 2-hour walk to clear my head and get exercise. I meditate without fail twice a day. I’m also careful about what I eat with things like the amount of sugar I have. Transcendental meditation, for instance, has really helped me. I met a guy who had been meditating for 20 years, and he said that for that 20 years he had been happy 80% of the time. I couldn’t believe it. I had never conceived of that. So I started meditating without fail. So what does it mean to be happy? What does the word “happy” mean to you? “Happy” has a completely different connotation than before bipolar. Before bipolar, happiness meant positive emotions that you would experience watching a comedy. It was just anything that was not negative, but it was actually since my experience with bipolar and coming out of it that now, happiness is feeling the full range of meaningful emotions, including the pain and the bliss and the appreciation of the contrast between them. When you go through extreme pain, you’re almost forced to bring some sort beauty to it, some sort of meaning that’s aesthetically pleasing. Your appreciation of emotion is much deeper and richer. My sense of happiness feels much richer and deeper than before. I look back at my previous self, and that sense of happiness was so shallow. True happiness is having an appreciation of the darkest and brightest emotions and being able to experience both of them equally. Paul Dalio, writer and director of the film Touched with Fire.
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What’s New on the NAMI Bookshelf? By Laura Greenstein, NAMI Communications Coordinator
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very month, NAMI receives books on a variety of mental health topics. If you are looking for some new books to add to your reading list in the New Year, here are a few recommendations:
I’d Walk with My Friends if I Could Find Them Houghton Mifflin Harcourt (2015) This novel exemplifies the extreme choices that soldiers are often forced to make during wartime. These decisions, which are often made within seconds, are the ones that veterans have to live with for years. I’d Walk with My Friends if I Could Find Them is a poignant and honest tale of three soldiers coping with their time in Afghanistan. Each of their stories is fully chronicled from their childhoods to well after their deployments. Throughout the book, author Jesse Goolsby addresses the many pertinent questions that challenge the lives of veterans, including, “What is the price of forgiveness?” As you read this novel, the deep effects of trauma that so many veterans live with every day will haunt you.
SuperBetter: A Revolutionary Approach to Getting Stronger, Happier, Braver and More Resilient—Powered by the Science of Games Penguin Press (2015) What if there was a game that could help you with your recovery process? SuperBetter is a book designed to help you to become stronger, happier and healthier by simply completing playful exercises and challenges. Game designer Jane McGonigal explains how thinking within a gaming mindset improves our ability to recover by increasing our resilience to stress, challenge and pain. There are three main psychological strengths that we use when playing games: controlling your attention, thoughts and feelings, strengthening your relationships, and motivating yourself. This book is meant to bring out the strengths we use while playing games and to take advantage of them to help us achieve our real-world goals.
Shop at
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Support NAMI when you buy on Amazon. Go to NAMI.org/Amazon and up to 8% of your purchase will go to support NAMI. 28 | NAMI ADVOCATE | Winter 2016
Coping with BPD: DBT and CBT Skills to Soothe the Symptoms of Borderline Personality Disorder New Harbinger Publications (2015) Coping with BPD serves as a practical guide for those who deal with intense emotions, mood swings, self-loathing and the many other symptoms that accompany borderline personality disorder. The methods of reducing these symptoms are drawn from the skills learned in both dialectical behavior therapy (DBT) and cognitive behavior therapy (CBT). Some of these skills include mindfulness, recognizing and controlling your emotions, setting realistic goals, learning how to solve problems and challenging negative thoughts. This book is designed to help those living with BPD manage their symptoms and live better lives.
Shades of Blue: Writers on Depression, Suicide and Feeling Blue Seal Press (2015) If you are living with depression or suicidal thoughts, you are not alone. Shades of Blue is a compilation of 35 personal stories from people who have experienced depression or who have lost loved ones to suicide. The book surfaces feelings of empathy and compassion as these compelling writers bravely share their most personal accounts. Weaving through themes of hopelessness, desperation, loss and acceptance, this book is both heart-wrenching and relatable for those who have experienced a similar struggle.
All the Things We Never Knew: Chasing the Chaos of Mental Illness Seal Press (2015) Reporter Sheila Hamilton highlights the tragedy that comes from missing or ignoring the signs of a mental health condition in her book, All the Things We Never Knew. Shelia shares her personal narrative of losing her husband to suicide shortly after he was diagnosed with bipolar disorder. Not only did she have to recover from the grief of her loss, she was also left alone to care for their young daughter and manage the mountain of debt her husband left behind. The story takes you through their whole relationship from its beginning until a year after his death. It paints a picture of the unraveling of their family as his symptoms worsened and the grief Sheila faced after losing him. This is a story that any person who has lost a loved one to suicide can relate to.
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NAMI Board of Directors Nominations, Bylaw Amendments and Resolutions Sought for 2016 Board Nominations: Nominations are being accepted for candidates for election to the NAMI national board of directors at this year’s annual meeting at the NAMI National Convention in Denver in July 2016. Five (5) candidates will be elected to serve for the standard three-year term. For more information about the election process, visit www.nami.org/voting. Nominees must be NAMI members of record of the NAMI Affiliate or NAMI State Organization making the nomination. Each NAMI Affiliate and NAMI State Organization may nominate only one (1) candidate annually. Only NAMI Affiliates and NAMI State Organizations that have submitted their membership and paid their dues by the nomination deadline of April 9, 2016—90 days before the date of the annual meeting—may make nominations. A nomination form is available on www.nami.org/voting. The form must be accompanied by a nomination letter made on the letterhead of the nominating NAMI Affiliate or NAMI State Organization, including evidence of authorization by the board of the NAMI Affiliate or NAMI State Organization to make the nomination, and must be signed by the chief officer of the NAMI Affiliate or NAMI State Organization. (If the chief officer is the nominee, then another proper officer must sign.) All material must be received by April 9, 2016. Nomination packets in PDF format with signatures included may be submitted by email to voting@nami.org. Nomination packets sent by hard copy should be addressed to: NAMI Attn: Elections 2016 3803 North Fairfax Drive, Suite 100 Arlington, VA 22203 To ensure compliance with NAMI’s Bylaws, 75% of the NAMI Board must be “persons who have or have had mental illness, or parents or other relatives thereof.” Candidates will be asked to make a statement to this effect. No more than five (5) members who do not have a lived experience with mental illness themselves or as a relative may serve on the NAMI Board at any time. All current NAMI Board members identify as having lived experience as described above. Bylaw amendment proposals and resolutions: For consideration at the 2016 NAMI National Convention, proposed amendments to the NAMI Bylaws and proposed resolutions must be sent to the NAMI office at the above address by returnreceipt mail and received by NAMI no later than April 9, 2016. Proposed amendments to the NAMI Bylaws must be submitted in amendment form. For guidance on making submissions, please contact us at voting@nami.org. Visit www.nami.org/voting for complete election information. In late April 2016, this site will also include: • • •
Candidate information (personal statements, letters of nomination, answers to questions of importance to NAMI and candidate speeches) Bylaw proposals Proposed resolutions
Please send questions about the election process to voting@nami.org.
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3803 N. Fairfax Dr., Suite 100 Arlington, VA 22203-1701 703-524-7600 www.nami.org