NAMI’s 2011 Priorities

by Michael J. Fitzpatrick, Executive Director

Over the next few weeks, NAMI members will be receiving in the mail their copies of The Advocate, NAMI’s flagship print publication. There will be a compelling collection of articles in the issue, including interviews with actress Jodie Foster and author Mark Vonnegut as well as other features on genetics and mental illness and African American mental health.

The issue will list many of NAMI’s priorities for 2011. One of them is the fight to protect and strengthen state mental health services despite ongoing state budget cuts, which I discussed in my last entry. But there are also other priorities. Some of these include:

• Ensuring successful implementation of the Affordable Care Act (ACA), also know as the new health care reform law, which includes Medicaid expansion;.

• Celebrating of the 20th anniversary of NAMI’s Family-to-Family education program, including expansion of its partnership with the Department of Veterans Affairs;

• Demanding early identification and effective treatment of mental illnesses in children and adolescents;

• Continuing NAMI’s leadership in criminal justice reforms, especially through our Crisis Intervention Training  (CIT) Technical Assistance Center for police, advocates and communities;

• Strengthening the role of NAMI’s Consumer Council;

• Continuing to develop cultural competency both in NAMI and throughout the mental health care system;

• Providing technical assistance to NAMI’s 1,100 state and local affiliates to achieve “standards of excellence” that will strengthen grassroots activities; and

• Increasing technological capacity for information and communications, including social media, and continuing to build our StrengthofUs  web community for youth, ages 18-24.

At NAMI we are proud of what we have accomplished over the past 30 years, but my sense is that in 2011 we are needed more than ever before.

As President Obama declared this past week in his State of the Union address, there is much work to be done “to win the future.”  Working together, we can make a difference.

State Advocacy in the Wake of Arizona

by Michael J. Fitzpatrick, Executive Director

State legislatures are convening across the country on the heels of last week, when many Americans struggled to find answers to tough questions surrounding the tragic shooting incident in Tuscon, Arizona.

As we at NAMI were engaged with media throughout the week, we saw the story changing. Early in the crisis, news media were contacting us about issues primarily focusing on gun control, laws and legal issues. Over the course of the week, however, the focus began to change.

According to a Quinnipiac University poll released late last week and discussed on weekend political talk shows, only a small percentage of those polled said they believed the shootings were politically motivated and most believed that the situation was avoidable. Significant for NAMI, however, is that 23 percent of those polled said they believed the tragedy was the result of an inadequate mental health care system.

Just nine percent blamed loose gun control laws.

This is consistent with what we experienced. By the end of the week, journalists, producers and other members of the media were requesting information and insight on the mental health care system, the budget crisis, consequences of previous years’ cuts and assistance in understanding the important role of family support and education. We anticipate a range of media coverage of this advocacy priority and are working to ensure that our story, and the story of millions of American families, is heard.

These are NAMI’s issues. If any good can come from a situation such as the Arizona tragedy it is to raise awareness for the need for a mental health system that is accountable to meeting the needs of families and individuals affected by mental illness.

This week and in the coming months, as our legislatures are debating their states’ budget crisis, what to cut and what to keep, we all need to send a strong message that mental health care can’t take any more cuts.

We know that many states continue to find themselves in a dire budget crisis. Since 2009, states have cut more than $2 billion from essential services for persons with mental illness and eliminated over 4000 inpatient psychiatric hospital beds. We have already lost many essential services that help people with serious mental illness get services when they need them. And one-fifth of the states have proposed or already cut their mental health budgets for the next fiscal year.

I ask, what is left to cut? Are we willing to accept the fact that on any given day one-half of all Americans with mental illness are untreated?  In too many communities people simply do not know where to get help when they need it.  There is a general lack of available information and/or the barriers are too steep to get the necessary evaluation, diagnosis and effective treatment. 

If mental illness is an illness like any other, why do we treat a person having a psychotic episode different than someone having a heart attack? Why do policymakers tolerate a mental health system where law enforcement, jails and prisons, emergencies rooms and homeless shelters are the entry point for the mental health system for many with untreated serious mental illness? 

We must tell policymakers, no more! Tell them the cost is too high! Tell them to prioritize services for people with serious mental illness. Tell them it is time to educate the public on what mental illness is and how to find services. Tell policymakers to spend smart and be accountable for the services they fund. Tell them to fund early intervention services that get services to people when they need them. And tell them to support the families and friends who offer invaluable support to persons with mental illness.

So let our advocacy begin in earnest this week and next. Please send an email message now through the NAMI website. Alert your friends and family to do the same. Individuals, families, friends, neighbors and co-workers who are affected by mental illness urgently need your help.

Discussing the Arizona Tragedy on NPR

By Dr. Ken Duckworth, NAMI Medical Director

Listen to NAMI Medical Director Ken Duckworth discuss the Arizona tragedy on NPR.

The tragedy in Arizona raises many more questions than it answers. One key area under discussion is the role of unassessed and untreated psychiatric disorders in the lives of young adults, who are already undergoing multiple life stressors. NPR’s popular program, The Diane Rehm Show, as well as Wisconsin NPR and Minnesota NPR,  devoted an hour to this crucial discussion this week. NAMI was well represented in these discussions. Pete Earley, a NAMI  father and author of Crazy: A Father's Search Through America's Mental Health Madness; Lisa Dixon, M.D., leading researcher and NAMI  scientific advisory council member; E. Fuller Torrey, M.D., of the Treatment Advocacy Center and I  participated in the Diane Rehm NPR show. I encourage you to click on the link to the recording of her show from Jan. 11.

Mr. Earley spoke eloquently about a parent’s conundrum—how hard it can really be to get mental treatment for one’s child, in part due to the fact that our health care system has not learned how to dance gracefully between the demands of privacy versus the demands of personal and public safety. Any catastrophic outcome gives us all pause to reflect what we can learn, and some facts will emerge over time to understand decision points in the Tuscon tragedy. If there is one positive note, it’s that tragedy can sometimes inspire public discourse about an often silent problem—the failure to have an accessible and well resourced mental health system. When we see evidence of how high the stakes can be when it happens that someone in crisis does not receive timely intervention, it can help focus attention on improving culture of help seeking, and the need for diagnosis and treatment. Because treatment does work—it comes down to investment in college, public and private mental health and substance abuse services and to our collective acceptance as a culture that getting help is positive and healthy. Such an investment ends up being less costly—in dollars and heartache—in the long run. 

There are likely many things we can learn as the data comes in on this tragedy. In the meantime, I encourage parents and friends of people they are concerned about to follow your gut.  When parents find themselves waking up in the early morning, worrying about their child, I recommend that they talk to their loved one and see if they can discuss their experience, and get an evaluation. Maintaining your support and connection with the person is key—if that is impossible then work to get help to understand why. That step has it own resource challenges of course, and this is another hurdle to getting help.  Many people trust their general practitioner, who may help or find a psychiatrist or mental health professional who can.  He or she can help you figure out what is normal adolescence and what is a mental health problem. This can be the hardest thing you will ever do--getting a loved one help who does not know he or she has a mental illness—and as many as 50 percent do not when living with schizophrenia or bipolar disorder. This can be one of the most difficult, and more important, acts of love you may ever have to perform.  Get support for yourself as you engage in this challenge to find the right path with people you trust or in a NAMI support group.  Always see if you can find a way to get your loved help with consent and collaboration.  But that can be impossible in some psychiatric situations. If you do need to put someone into an evaluation or treatment against their will, they may not thank you. But you may make a difference.

Call the department of mental health in your state to get information about resources for services.  Substance abuse can increase the risk of violence and complicates treatment efforts,  regardless of whether someone is living with a mental illness. Contact the Substance Abuse and Mental Health Services Administration (SAMHSA) for a substance abuse treatment facility locator. You may have to fight to find a bed if you live in one of the many states where hospital beds are being closed (while more prisons are being built).

There is a saying, “Pain shared is pain halved.” Families and communities need to work together to create a situation where there is no prejudice against seeking mental health treatment or towards people who live with mental illness. Join NAMI—we are the focused advocates for change that can help make this happen.  NAMI is one of the key authors of material improvement in the opportunities for people living with mental illness and their families. Our national network represents the change we long to see in our culture and our care systems. The mental health care system needs transparency, and NAMI wants to hand as many service and treatment tools as possible in the hands of individuals and families. We need to have a national conversation about mental illness —both on possible lessons from this tragedy and also for the thousands of young adult Americans who are not encouraged, willing or able to get the help that could promote their recovery. Because treatment often  works—if you can get it.

Recent Research: Meeting the Mental Health Needs of the GLBT Community

by MaJose Carrasco, Director of NAMI's Multicultural Action Center

MaJose Carrasco, Director of NAMI's Multicultural Action Center

One after another, we read about them in the news this fall—Asher Brown, 13, Seth Walsh, 13, Billy Lucas, 15, Tyler Clementi, 18 and Raymond Chase, 19. These young people had one tragic thing in common—they all died of suicide following bullying and harassment due to their sexual orientation. Sadly, these lives cut short underscored how the physical and mental wellbeing of gay, lesbian, bisexual and transgender (GLBT) youth is hindered by the misunderstandings, restricted freedom and personal attacks that are all variants of homophobia. Research has shown that GLBT youth are more vulnerable to depression, anxiety and suicide due to stressors associated with their sexual orientation or gender identity. Over time, these incidents accumulate in a person’s experience, driving home the feeling that there is no place for them as they are in society. Some, like the five young people mentioned above, think that they will not be missed.

GLBT individuals, who represent 10 percent of our country’s population, face many of the same challenges the rest of Americans face when dealing with mental illness. However, GLBT individuals often face additional mental health stressors but as well as challenges when seeking quality treatment. Barriers to treatment include lack of community knowledge about mental illness, stigma and lack of cultural competence in service delivery. In addition, there are few studies dealing specifically with GLBT mental health, though thankfully, GLBT-specific mental health research has increased as evidenced by three new studies published in the last couple of weeks. These welcome additions to the body of knowledge about GLBT wellness will help us better understand how mental illness affects this community and assist us in indentifying risk factors, community specific treatment options, interventions and more. Below are brief summaries of the three research articles published recently.

Mental Health Disorders, Psychological Distress, and Suicidality in a Diverse Sample of Lesbian, Gay, Bisexual, and Transgender Youths
American Journal of Public Health
Researchers at the University of Illinois at Chicago published this study which determined that approximately one-third of GLBT youth in the sample had attempted suicide even though the majority (70 percent) of study participants do not meet the criteria for mental illness. About 10 percent of participants met criteria for post-traumatic stress disorder, 15 percent met criteria for major depression, a third had made a suicide attempt and 6 percent had a suicide attempt in the last year. These rates are higher than rates from youths in national samples but similar to rates from racial and ethnic minorities.

For more information visit http://www.impactprogram.org/


Family Acceptance in Adolescence and the Health of GLBT Young Adults
Journal of Child and Adolescent Psychiatric Nursing
This study from the Family Acceptance Project at San Francisco State University establishes a solid link between family acceptance and overall health and risks for GLBT youth. GLBT teens from families with accepting attitudes and behaviors, such as advocating for their GLBT children and supporting their gender expression, had better overall health in adulthood. Supportive family attitudes are protective factors against depression, substance abuse and suicidal thoughts and attempts. In fact, GLBT youth with low levels of family support were over three times more likely to have suicidal thoughts and to report suicide attempts than GLBT youth with supportive families.

Furthermore, GLBT youth from supportive families had higher levels of self-esteem and social support in young adulthood. The message is clear, acceptance and support from parents and families not only protect GLBT youth from suicide risks, substance abuse and depression, but also promote overall wellbeing. In order for us to improve these youth’s mental health outcomes, we must develop interventions to help increase family acceptance and support.


Criminal-Justice and School Sanctions Against Non-heterosexual Youth: A National Longitudinal Study
Pediatrics, the official journal of the American Academy of Pediatrics
This Yale University study focused on lesbian, gay and bisexual (LGB) youth, who they found to receive excessive punishment in comparison to non-LGB youth engaged in similar behavior. The study found that LGB youth were about 40 percent more likely than non- LGB youth to be punished by school authorities, police and the courts (punishment included school expulsions, arrests, juvenile and adult convictions and police stops). They were 50 percent more likely to be stopped by police officers, more likely to be expelled from school and convicted as adults. Adolescent girls who identified as lesbian or bisexual were particularly at higher risk to receive harsher punishment. They reported twice as many police stops, arrests and convictions as non-LGB youth who had engaged in similar behavior.
Most alarmingly, the differences in punishment were not explained by differences in the rates of misbehavior. Actually, in the study, LGB youth engaged in less violence than non-LGB teens.

When one of my dearest friends was diagnosed with depression, he felt extremely afraid.  He felt that this was something he could not really share even with his partner for fear of being rejected and misunderstood.  He shared his fears with me since he knew I worked in the mental health field.  He feared not being accepted or understood due to his illness and he shared that this reminded him about his coming out process and the fears and concerns he had of not being accepted or understood because of his sexual orientation.  Nobody should have to fear acknowledging his/her sexual orientation. Nobody should have to fear acknowledging his/her mental illness. Unfortunately, many Americans justifiably have these concerns.  As the research studies described above show, the stressors GLBT individuals face are real and can significantly impact a person’s mental health. 

As mental health advocates we need to continue spreading the word about mental health and recovery. Our stories, our education classes and support groups and our advocacy can help end the stigma many people face so that one day, a person diagnosed with mental illness does not have to fear rejection. The studies above also back up the need for the mental health community to develop interventions to help increase acceptance and understanding of GLBT youth.

Concerted approaches at the local, state and national levels can help prevent tragedies and save the lives of many GLBT youth who today may not feel accepted by their peers or even their families.

Since 2007, NAMI has focused attention on the specific mental health needs of the GLBT population. As we have with other NAMI communities, we listened to the guidance and input from the community leadership,  NAMI’s GLBT Leaders Group, and we have developed several fact sheets and resources including A Mental Health Recovery and Community Integration Guide for GLBTQI Individuals: What You Need to Know and GLBTQI Mental Health: Recommendations for Policies and Services.

For additional resources and information visit www.nami.org/.