Friday, July 18, 2014

National Minority Mental Health Awareness Month: The Time for Action Is Now

By Corrine Ruth, NAMI Policy Intern

In honor of National Minority Mental Health Awareness Month, individuals and organizations across the nation are speaking out about the need for increased attention to mental health and improved access to mental health services for diverse populations.

To Cecelia Williams, stigma is one of the most prevalent challenges she has faced in her role as NAMI Sharing Hope coordinator in southeast Texas. But she also knows that transforming the conversation requires a relentless commitment to “educate people about mental illness, treatment options and research.”

An Engaged Community is an Active Community

Building trust within diverse communities takes time and consistency, especially when it comes to increasing awareness about mental health. Education programs that acknowledge and reflect the diversity and values of a community appear to be effective forms of engagement.

That is why National Minority Mental Health Awareness Month is so important to Cecelia and many other leaders across the country. Gloria Walker, president of NAMI Urban Greater Cincinnati Network on Mental Illness has thought strategically about her Affiliate’s July community event because “it gets the word out to an underserved community of people with very little, if any, knowledge of mental illness and recovery and gets them talking about it.”

The Celebration is in Full Swing!

Community events, campaigns and initiatives help us bring widespread attention to the mental health needs of minority groups.  These events create a setting for individuals to discuss important issues and allow advocates to connect with local leaders and communities. Through music, art, food, speeches, presentations, book discussions and film screenings, we are sharing the message that mental illness impacts people of all backgrounds and that people of all communities need access to mental health care and treatment.

Cecelia partnered with local community organizations to sponsor a suicide prevention presentation on July 12 as part of a wellness series. Gloria planned a reception featuring a keynote speaker from the American Psychiatric Association Office of Minority and National Affairs, a breakfast panel and two breakout sessions to capture tangible plans of action on minority mental health advancement.

Developing the relationships formed through the process of putting on this event is a must,” said Gloria. Beyond the personal satisfaction, NMMHAM has allowed me and my Affiliate to increase our network of contacts.”

Here is a list of some of the great things other NAMI Affiliates are doing:
  •        NAMI of Greater Toledo is sharing information about mental health and NAMI programs at a local minority health fair – and they’re doing it in style by bringing the NAMI Ohio mobile mental health bus!
  •        NAMI Prince George’s County held a mental health forum at a local church that focused on mental illness and stigma in the African American community. Participants shared what it was like to experience mental illness and audience members were allowed to engage in productive discussion about the specific mental health challenges faced by minorities.
  • NAMI Cumberland Harnett and Lee Counties is hosting a discussion of the book, The Secret She Kept by Rhonda Tate Billingsley, which focuses on mental illness in African American family.
  •   NAMI Wisconsin has held a series of culturally diverse music events in local parks and public spaces. They’ve worked to share information about mental illness and distribute NAMI materials at each concert.
  •    NAMI Santa Clara County has planned a “Food Fun Dance Education Day” that features Asian and Latino dance and food presentations along with wellness instruction.

The list of NAMI NMMHAM events goes on. And there’s still room for you to get involved! We encourage you to reach out to your local NAMI to see if there are any events in your area that you can participate in.

Here are some ideas of what you can do to keep the momentum on minority mental health going:

·         Like us on Facebook
·         Tweet using #MinorityMentalHealth
·         Share your story

Thursday, July 17, 2014

Promise and Patience in Understanding the Brain

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

There is a growing recognition in both the U.S. and Europe that a fundamental understanding of how the brain works is an urgent priority.  This flows from the awareness that the public health burden of brain-based conditions is staggering, and that for the first time we have some truly promising tools to help us get there. This substantial scientific effort will take patience but it also holds much promise.

The approaches on either side of the Atlantic are quite different. Given how much of what we know from drug discovery is rooted in good observation and chance, it is hard to predict what approach will yield the best results.

In the U.S. President Obama announced the BRAIN Initiative, which will “seek to map the circuits of the brain, measure the fluctuating patterns of electrical and chemical activity flowing within those circuits, and understand how their interplay creates our unique cognitive and behavioral capabilities.”

In Europe the European Union’s Human Brain Project (HBP) seeks to model the human brain on supercomputers. Recently some scientists have formally criticized the EU approach, calling it premature. Regardless, both investments represent nearly simultaneous multiyear commitments to better understandings of the neuroscience we need so badly to advance care.

Understanding the brain better does not mean mental conditions are only about genes or biology. An important principle is that environment impacts genes and gene expression—this concept is called epigenetics. Environment could mean protective elements like love and holding or risks like viruses at certain stages of neurodevelopment or traumatic experiences. It’s important to think both and not either-or when thinking of psychiatric conditions and the brain and environment.

We have a greet deal to learn but have already come upon some important findings. We do know that the brain is more plastic—able to adapt and be shaped—than was first thought. Imaging the brain (fMRI, PET scans) have helped us move forward in basic functional understanding, but isn’t a clinically useful tool at this time.

On the basic science side, two major recent breakthroughs stand out. First, the ability to generate stem cells from adult skin holds great promise. In 2014, scientists have looked at nerve cell responses taken from stem cells from individuals with bipolar disorder to learn how they function differently than from people without bipolar disorder. Another recent basic science breakthrough is optogenetics, which is the ability to impact specific cells through light and modified proteins. These are not yet clinically useful, but will teach us a great deal about the human brain. That knowledge will lead to better interventions.

One of the challenges I have as NAMI’s Medical Director is cautioning patience even as I am so hopeful that novel scientific avenues will bear fruit. It is hard to know when and what new treatments and interventions can come from a more thorough understanding of the human brain. People want and deserve better treatments now, as there is a great deal of unmet need in the areas of brain disorders. Both a commitment to science to learn more and getting people what we already know works are essential.



Monday, July 14, 2014

Employment and Mental Illness: Investing in Programs that Work

By Dania Douglas, NAMI State Advocacy Manager

“My mental condition was horribly debilitating for many years. I had no reason to get out of bed in the morning….I had no direction and no purpose. Now, when my feet hit the floor, I get to go to work every day and practice my passion.” – Stephanie Joseph, CPA, Office Administrator NAMI, Montgomery County.

Ask 100 different people what work means to them, and you are likely to get 100 different responses. It can simply mean a source of income; it can provide a purpose; it can create order in life; it can be an opportunity for creativity and building something new; it can be a chance to help others.

People with mental illness work successfully in a range of professions: at artists, scientists, famers, engineers, lawyers, construction, workers, chefs. Look anywhere and you will find people with mental illness leading and innovating.

Yet, the reality in America is that many people with mental illness are either unemployed or underemployed. Bouts of illness, difficulty concentrating, trouble communicating with co-workers, medical appointments and absences from work can make getting and keeping a job difficult. Stigma and discrimination can also be great barriers to overcome.

NAMI just released a report, Road to Recovery: Employment and Mental Illness, which explores the current state of mental illness and employment in the United States. It examines the reasons for low unemployment rates among people with mental health conditions, and describes the most effective supported employment programs that have been developed to date. The report is also a call to action for policymakers and advocates. It includes policy recommendations and model legislation that leaders could use to make supported employment programs available to the people who need them.

Almost 80 percent of the nearly 7 million individuals served by the public mental health system in this country are unemployed. About 60 to 70 percent of these same people want to work and would work if they had appropriate support. The current employment support systems we have in place are simply not effective for most people with mental health conditions. It is time for a change.

The good news is that there are employment programs that have been studied, tested, and shown to help people with mental illness choose, get and keep a job.

Individual Placement and Support (IPS) Supported Employment is a system that focuses on rapid placement in competitive employment and in jobs that match an individual’s talents and interests. IPS has a strong evidence-base shown to significantly improve the opportunities for people with mental illness to find and keep employment.

Clubhouses are community centers open to anyone with a mental illness. Clubhouses offer a variety of employment services including transitional employment and independent employment programs. Both have been proven through research to help improve opportunities to find and keep employment.

Assertive Community Treatment (ACT) is a team-based system that provides intensive support services to people with serious mental illness in the community whenever and wherever they are needed 24/7. Every ACT team should include a vocational specialist. ACT has a proven track record of helping people find and keep employment.

When we invest in programs that work, we invest in real lives, in real people, in real success and real recovery.

Tuesday, July 1, 2014

Every Voice Matters, Especially in July

By Corrine Ruth, NAMI Policy Intern

Sergio Aguilar-Gaxiola, M.D., NAMI California 1st Vice President;
Caliph Assagai, Legislation and Public Policy Director; Jessica Cruz,
NAMI California Executive Director; Assemblyman Sebastian Ridley-
Thomas, chair of the Assembly Select Committee on Mental and
Behavioral Health.

In 2008, Congress declared July as National Minority Mental Health Awareness Month (NMMHAM) in honor of author and advocate, Bebe Moore Campbell. Her close experience with a family member living with a severe mental health condition compelled Campbell to write multiple books on the topics of mental illness, treatment and recovery within a family setting. But she did not stop there.

Campbell fervently believed that the national dialogue surrounding mental illness should acknowledge diverse communities. She became a prominent advocate for mental health education and support for minority populations. NMMHAM is inspired by Campbell’s efforts to include people of all communities and backgrounds in the national conversation on mental illness and increase awareness of mental health issues that, without distinction, affect us all.

Minority Mental Health Is Not a Minor Issue

As Campbell emphasized, mental illness is associated with unique concerns for minority groups. Research shows that stigma towards mental illness is especially high in minority communities, making it more difficult for individuals to talk about their concerns with family members and peers and discouraging them from seeking treatment. In Campbell’s own words, “People of color…feel the stigma more keenly. In a race-conscious society, some don't want to be perceived as having yet another deficit”. People from culturally diverse groups often face additional barriers to mental health care such as financial cost, accessibility of treatment and language difficulties.

Every person dealing with a mental health problem should have access to quality care. Every community should be aware of the importance of mental health, the sings of mental health conditions and where to find the support they need. This is why NMMHAM is an exceptional opportunity to spread the word about these issues, raise awareness and mobilize communities.

Let’s Celebrate!

During the month of July, to celebrate NMMHAM and honor Campbell’s legacy, NAMI State Organizations and Affiliates across the nation will be focusing on how we can better address the mental health needs of people from culturally diverse groups and increase awareness of minority mental health issues locally.

The celebration kicked off on June 26 with an exciting legislative event organized by NAMI California at the State Capitol building in Sacramento. Together with Assemblyman Sebastian Ridley-Thomas, NAMI California leaders presented a resolution proclaiming July as National Minority Mental Health Awareness Month state-wide. At the event, a variety of speakers testified to the importance of recognizing minority mental health, including Senator Jim Beall, who recently led efforts to enforce mental health parity in the state budget, and individuals from diverse backgrounds who shared their experiences dealing with mental illness.

Many additional exciting and creative events are planned for this month ranging from art shows and music festivals to educational presentations and forum discussions. We encourage you to join us in celebrating mental health awareness and diversity!  

Here are some suggestions for things that you can do to spread the word about the importance of minority mental health:

  • Share your unique story about how you or someone you love has been affected by mental illness to let others know that they are not alone. We’ve put together some tips about including information about your community when sharing your story for NMMHAM. 
  • Participate in our July 10 NMMHAM Celebration webinar on bridging the gaps in access to culturally competent mental health care and support for minority communities.
  • Share information about NMMHAM on your social media profile. “Like” the NMMHAM page on Facebook and use the hashtag #MinorityMentalHealth to join the conversation on Twitter. 
  • Visit for more resources and ideas on how to get involved.

Mental illness affects people of all cultures, identities and backgrounds. Let’s promote awareness and encourage understanding this July. Let’s make a difference.

Tuesday, June 24, 2014

Enough is Enough: Regulate Restraint and Seclusion in Schools

By Corinne Ruth, NAMI policy intern and Darcy Gruttadaro, director of the Child and Adolescent Action Center

The need to regulate restraint and seclusion in our nation’s schools just gained significant momentum with the release of a new report and an NPR article that highlights the need for immediate action. ProPublica analyzed data released by the U.S. Department of Education showing that there were 267,000 instances of restraining or secluding children in schools in one school year. The NPR article highlights an incident in which a young boy with autism panicked after being threatened with seclusion. When school officials tried to force him into the “quiet area” a small locked room, bones in his hand were crushed.

Despite claims that schools are limiting the use of restraint and seclusion, these unacceptably high numbers suggest otherwise. Some schools reported restraining or secluding students dozens and even hundreds of times each year. In 75 percent of these cases, restraint and seclusion was used with children with a disability including mental illness. Many of these instances of restraint and seclusion were improperly used when an emergency did not exist.

Congress has introduced The Keeping All Students Safe Act (HR 1893, S. 2036) to protect children from the unnecessary and harmful use of restraint and seclusion. This legislation allows restraint to be used when a student’s behavior poses an immediate danger of physical harm to that student or anyone else. For example a student may be restrained if they are striking other students, banging their head against the wall, “gouging their eyes”, or other related behaviors. In cases when restraint is used, the bill requires schools to notify the child’s parents and work with them to plan ways to better manage difficult behaviors in the future. The Keeping All Students Safe Act fosters a positive learning environment in schools by promoting interventions that help minimize disruptive classroom behaviors and instructing school staff in more effective ways of addressing students who may be in crisis.

Momentum is building for this legislation and we urge you to be a part by contacting your Congressional representatives to ask for their support and to use their leadership to move the legislation forward to a vote.

Friday, June 20, 2014

Hitting the Streets: Engaging People When and Where It’s Needed Most

By Mary Giliberti, NAMI Executive Director

As the Executive Director of NAMI, I get many heartbreaking emails and take NAMI HelpLine calls about individuals who are not doing well and families who are suffering with their loved one. Much of the conversation in the mental health community regarding these situations has focused on the poor outcomes, including criminalization, emergency room boarding and homelessness.

These outcomes are shameful and should be condemned. But surprisingly little attention has been paid to specific services and interventions that could potentially reduce these poor outcomes.

Engagement is a term that most people think of as a period prior to marriage. But in the mental health community, we use that term to describe working with an individual so he or she is amenable to receiving treatment, services and supports to help achieve life goals, such as employment, housing and relationships. Very little research and focus has been given to how to do this for the group of individuals who are most likely to experience poor outcomes because they express resistance to participating in any treatment or support services.

NAMI will be spending significant time and energy in the coming months on the topic of engagement—what works for those in the most need of help and how can we increase access to it.

This work begins with a STAR Center webinar on Tuesday, June 24 from 2-3:30 p.m. ET, entitled “Hitting the Streets: Engaging People When and Where It’s Needed Most.” (You can view a recording of the webinar here.)

Another STAR Center webinar is scheduled for July 22.

NAMI also has a special policy forum planned at our national convention in Washington, D.C. that will be devoted to engagement strategies. This forum, entitled “Refocusing the Conversation: Strategies for Engaging People in Needed Services and Supports,” will take place on Saturday, Sept. 5, from 1:30-4 p.m. ET.

Causes of Rejection

There has been much discussion and debate about the cause for rejection of treatment or supports. Some argue it is the result of the illness’s effect on the brain that causes a lack of recognition of the illness. Others believe it is caused by the trauma of the mental health system which often treats people very poorly and without regard to their preferences. Still others believe it is caused by the difficulties people have in accessing the kinds of mental health services and supports that they want.

 My personal belief is that all of these factors are at play with a significant effect from the condition itself. In my experience, the strength of the resistance indicates something greater than just the result of uncaring and unavailable treatment and indicates that the condition is affecting the ability to recognize the need for help. However, I also believe that the way people are dismissed by those who are supposed to help contributes to the problem. I have been angered by the’ experiences of people living with mental illness and their families who are subjected to callous behavior and even downright meanness from hospital and mental health center staff. Of course, there are many caring professionals, but we frequently hear stories of indifference and harshness. And too often, the only service offered is medication without also offering other services vital to recovery, such as cognitive behavioral therapy, assertive community treatment (ACT), supported employment and housing.

NAMI’s Priority

The reason for rejection of mental health care, however, is less important than finding a way to overcome this resistance to help an individual achieve better outcomes.

Both the NAMI’s national board and the staff are committed to continuing to work in this area going forward because we recognize that NAMI was founded to fight for those who are experiencing the worst outcomes and we believe that all people should be given the opportunity to recover and contribute to their communities.

I also believe that if we can truly make effective engagement the standard of care, there will be less controversy about assisted outpatient treatment (AOT). If extensive and intensive outreach efforts are made using what we know from research and individuals are still unwilling or unable to receive assistance, then we know that AOT is truly a last resort to avoid bad outcomes. Then it will not be a fix to a system where services are all too often unavailable to people until they go into crisis.  And, it will not be an alternative to implementing a system that treats people respectfully and tries to engage them meaningfully in decisions about their own treatment, much as we do with all other medical conditions. 

Even with such a system, AOT may still be needed to help some people take the necessary first steps on the road to recovery. But, it should be a last resort, not the first or only resort in a system that lacks services until crises occur. And engagement strategies are critically needed when someone is subject to an AOT order so progress can continue after the order expires and the individual becomes invested in better outcomes.

 At a time when national scrutiny is focused on what can be done to help people before they reach the point of crisis, efforts to identify and implement effective engagement strategies are extremely important. Rather than argue over emergency interventions, we must focus on what can be done to ensure lasting effects and better long term outcomes for all people who live with mental illness.

In looking at engagement strategies, NAMI will examine what should happen early in the course of an illness to change the trajectory both for individuals experiencing emerging symptoms of possible illness and for individuals in the early stages of psychosis where research indicates that resistance is less than later in the course of an illness. In addition, we will look at how we currently pay for services, whether the services are being paid for are those that are most effective and well researched and what can be done to create incentives to pay for those services that work the best in reducing symptoms and improving overall functioning.

We look forward to continuing this dialogue with all of you and are interested in your views. You can write me at I also will share your thoughts with NAMI’s national board and staff.

Wednesday, June 11, 2014

Because of NAMI Programs…

By Jacki Higgins, NAMI Education Program Coordinator

The trainees from NAMI Georgia share what NAMI programs have done for them
with Colleen Duewel, NAMI National Director of Education (far left).

From June 6-8, 2014, NAMI hosted its annual National Training of Trainers event in Arlington, Va. Throughout the weekend, the energy and excitement in the air was tangible. Over 160 trainees arrived in the nation’s capital to become a state trainer in one of six NAMI Education’s signature programs. New this year was a dual training offered for trainees wanting to be trained in both NAMI Parents and Teachers as Allies and NAMI Ending the Silence.

NAMI Education’s Training of Trainers event is an annual training, which allows experienced NAMI program leaders the opportunity to become a state trainer. Once certified, state trainers go back to their states and help expand the NAMI education programs by training more teachers, presenters, and support group facilitators.

The theme of the weekend was “Because of NAMI Programs.” Trainees completed an artistic collage of messages to complete the sentence “Because of NAMI programs. Here is what some people wrote:

  • “Because of NAMI programs, I can change the world.”
  • “Because of NAMI programs, I found hope and understanding.”
  • “Because of NAMI programs, I am healthy and can help others.”
  • “Because of NAMI programs, I am going back to school in the fall.”
  • “Because of NAMI programs, my grandchildren have the care they need.”
  • “Because of NAMI programs, I found my son again.”

All through the weekend, trainees learned and practiced the techniques necessary to be successful state trainers.

Those that attended the weekend came into the trainings with excitement and hope. Most of the trainees have taught and participated in multiple NAMI programs. They volunteer their time and passion to NAMI and to the education programs. 

While the Training of Trainers event can be a lot to digest, the trainees leave with the confidence to pass their knowledge and skills on. The mixture of trainees is amazing – some have taught multiple classes or have been facilitators for years, while others may still be fairly new to NAMI having only taught one class or given a few presentations. But the heart is there. Program leaders are the heart of NAMI programs. As long as the heart beats, the education programs will continue to grow. There couldn’t be a group of finer people.