Wednesday, February 22, 2012

The First Lady of Mental Health

By Katrina Gay, NAMI Director of Communications

"We have to get the word out that mental illnesses can be diagnosed and treated, and almost everyone suffering from mental illness can live more normal lives."
– Rosalynn Carter

Last week, I had the opportunity to meet briefly with former first lady Rosalynn Carter in Atlanta after she filmed a public service announcement in support of NAMI Georgia’s Opening Doors to Recovery initiative. “Please help … build a circle of support in your community and put self-directed recovery within our reach,” Mrs. Carter asked.

Gracious, genuine, committed—as I watched her speak these were some of the words that came to mind. I reflected on this amazing woman and her role in changing our global understanding of mental illness.

Mrs. Carter was the first wife of a presidential candidate to declare a campaign promise of her own. Her promise? As first lady, she would assume the responsibility for guiding legislative reform on behalf of the nation’s individuals living with mental illness.

Expanding on efforts she initiated as first lady of Georgia, this is exactly what she did after her husband was elected President in 1976. This is remarkable on its own, but to put this in perspective, to say that America’s awareness of mental illness was very much in the dark in the 70s is an understatement; treatment options were in most cases nonexistent and mothers were blamed for their children’s mental illness. To further demonstrate the reality of this era, NAMI was not founded until 1979, three years after Carter’s inauguration.

A true pioneer, Mrs. Carter’s compassion and dedication on behalf of individuals and families affected by mental illness has not wavered in the more than 35 years since. Even a partial list of her accomplishments in this arena is eye-opening:

  • Her work as the Active Honorary Chair of the first President's Commission on Mental Health, which began on February 17, 1977. The commission prepared recommendations in a final report, suggesting that a 1963 act be overhauled to strengthen community center services, erase state-federal overlaps and create changes to health insurance coverage, public housing, Medicaid, Medicare and state support for those with the most chronic mental illness. There was also an advocacy recommendation for a bill of rights protecting individuals living with mental illness from discrimination. Administrative orders and public policy, most notably the Mental Health Systems Act, were landmark legislations that helped protect individuals living with mental illness.
  • Mrs. Carter also initiated increases in federal grants to the National Institute of Mental Health to continue research which often lagged.
  • Upon leaving the White House, Mrs. Carter remained active in these issues and policies through The Carter Center in Atlanta, a private, nonprofit institution founded by her husband and herself in 1982.
  • Mrs. Carter created and chairs The Carter Center's Mental Health Task Force, an advisory body of experts, individuals and advocates promoting positive change in the mental health field. She hosts an annual Rosalynn Carter Symposium on Mental Health Policy to address today’s most pressing issues.
  • In 1996, she initiated the Rosalynn Carter Fellowships for Mental Health Journalism to address the stigma associated with mental illness.
  • Along with Susan Golant—her latest was also coauthored by Kathryn Cade—she wrote three significant books addressing mental illness issues: Within Our Reach: Ending the Mental Health Crisis (2010), Helping Yourself Help Others: A Book for Caregivers (1994) and Helping Someone with Mental Illness: A Compassionate Guide for Family, Friends, and Caregivers (1998).

Her drive to aid individuals living with mental illness all began during a 1966 encounter early one morning while campaigning for her husband’s bid to become governor of Georgia. Mrs. Carter came upon a stooped and weary woman heading home to care for a daughter with mental illness. She was so moved by her love and dedication that she launched a personal crusade that continues today.

From the world stage to a corner of her home state, last week, more than 45 years later, she reminds us that we have a lifetime champion who will embrace all efforts, large and small, in support of improving our lives, our families and our communities.

Wednesday, February 15, 2012

Budget Debates: Let's Look at the Ground Level

By Mike Fitzpatrick, NAMI Executive Director

President Obama submitted his proposed federal budget for 2013 to Congress this week. As expected, it’s controversial. Much of the debate leading into the fall’s elections will be over what programs should be cut and how much taxes should be raised—if at all—on high income Americans in order to reduce the federal government’s deficit, let alone pay down the national debt.

As part of the debate, there will be choices important to individuals and families affected by mental illness, regardless of political party. Mental illness does not discriminate. It affects Republicans, Democrats and Independents alike.

For example, the President’s proposal would cut $360 billion in Medicare and Medicaid payments over 10 years, in part by cutting payments to providers. It also would freeze the National Institutes of Health budget, which is the source for scientific research into mental illness. Along with disability income, housing and other practical needs, these areas make the difference for treatment and recovery.

The squeeze on Medicaid especially affects state mental health care systems. In November, 2012, NAMI released a special report that outlined the impact of that squeeze, along with state budget cuts.

Expect state budget crises to continue. This past week, debate in several states and the impact of cuts—and rising demand—filled headlines in Florida, Iowa, Ohio and Oklahoma. In Florida, The Bradenton Herald posted a video of a protest that raised public awareness of the local impact of a proposed $91 million cut in state mental health care.

“If I didn’t have this service, I probably would be homeless,” Jeffrey Vassey, a 55-year-old man living with schizophrenia told the paper.

Budget debates speak in terms of trillions, billions, millions and thousands of dollars, depending on the size of the community—national, state or local.

It’s easy to lose perspective.

At the ground level, however, the perspective is easy. Mental health care often makes the difference between living on the streets and moving toward recovery. It can make the difference between life and death.

Let’s all keep that fact in mind and remind legislators and political candidates of it every chance we get as the budget debates continue.

Tuesday, February 7, 2012

American Idol: Singing Against Stigma

By Mike Fitzpatrick, NAMI Executive Director

It takes courage for a person to talk about living with a mental illness.

That’s especially the case if you are a teenager.

Even more so when disclosure takes place in front of a television audience of millions on the hit show American Idol.

On Jan. 25, 17-year-old Shelby Tweten of Mankato, Minnesota “wowed” the American Idol judges in an audition that featured a video about her struggle with bipolar disorder.

Shelby has lived with depression since she was in fourth grade. She was diagnosed with bipolar disorder in March 2011. Singing, she believes, has helped her to persevere.

“I want to show people that bipolar disorder doesn’t define who you are,” she said. In doing so, she has struck a powerful blow against stigma and discrimination.

NAMI members cheered and applauded in their living rooms. For those who were watching with their parents or teenage children, it was an emotional moment.

The moment carried even greater emotion as Shelby sang “Temporary Home” by Carrie Underwood. The refrain can serve as a metaphor in the journey toward recovery:

This is my temporary home
It's not where I belong
Windows and rooms that I'm passin' through
This is just a stop, on the way to where I'm going
I'm not afraid because I know this is my
Temporary home.

Both the video and vocal performance can be seen on many websites, including Hollywood Life.

Talking publicly about your mental illness not only can help strike a blow against stigma, it can be part of recovery itself. It can liberate a person from feelings of stigma. It can stop a person from internalizing shame or fear. Besides being a step toward recovery taken for herself, Shelby’s audition serves as an example that can inspire others. That’s one of the principles on which NAMI’s public education program In Our Own Voice also rests.

So what happens next?

The audition judges selected Shelby to compete as a semi-finalist in Hollywood. Contestants will be eliminated until a winner is selected by the audience in the final episode in May.

I think NAMI members will know who they want to vote for.

Keep singing, Shelby.