Rosalynn Carter helped change mental health care system

Rosalynn Carter testifies on behalf of the President’s Commission on Mental Health before the Senate Subcommittee on Health and Scientific Research of the Committee on Labor and Human Resources on Feb. 7, 1979. She was the second first lady to appear before Congress. (Jimmy Carter Library)

Credit: Jimmy Carter Library

Credit: Jimmy Carter Library

Rosalynn Carter testifies on behalf of the President’s Commission on Mental Health before the Senate Subcommittee on Health and Scientific Research of the Committee on Labor and Human Resources on Feb. 7, 1979. She was the second first lady to appear before Congress. (Jimmy Carter Library)

When Rosalynn Carter was stumping for votes for her husband’s 1970 Georgia gubernatorial race, she found herself at the gates of an Atlanta cotton mill one morning before dawn.

As the workers streamed out of the mill on their way home from the long, overnight shift, Carter tried to say good morning to an elderly woman, whose small, stooped frame emphasized how tired she looked.

“I hope you’re going home to get some sleep,” Carter told her.

The woman said she hoped to get some rest but explained to the future first lady that she had a daughter at home who was mentally ill. Because they had little to no support, the woman’s husband cared for the daughter overnight until she could take over in the mornings after her shift at the mill.

“The image of the woman haunted me all day,” Carter wrote in her 2010 book, “Within Our Reach: Ending the Mental Health Crisis.” “I kept thinking about how much she and her family suffered and how terrible it must be for them to know that there was no end in sight. I knew it was useless for her to try to get help. There was none available.”

The old woman’s story was one of many that Carter encountered on the campaign trail and in her personal life that helped shape her thinking about mental health. Those stories — about separation, fear and stigma — informed her thinking as she went on to lead the state’s mental health commission after Jimmy Carter’s election as governor.

The moral issue also pushed her to become a high-profile advocate for mental health during her husband’s presidency from 1977 to 1981, continuing her efforts in subsequent decades through her influential mental health and caregiver programs at the Atlanta-based Carter Center.

Rosalynn Carter, 96, died on Sunday, two days after the Carter Center said she had entered home hospice care. President Carter, 99, went into home hospice in February in Plains, Georgia, in the same ranch house the Carters have shared since 1961, save their years in the Georgia governor’s mansion and the White House.

People generally enter hospice care when they have been given a terminal diagnosis of six months or less to live. Some patients survive longer. In hospice, the focus shifts from trying to cure an illness to providing comfort care and support for the family.

In May, during Mental Health Awareness Month, the Carter family disclosed that Rosalynn Carter was battling dementia. Jimmy Carter has struggled with cancer and other health problems in recent years. They were last seen in public at their town’s annual peanut festival in September.

Feb. 1971 - Rosalynn Carter, wife of the governor, submits her application for volunteer mental health service to Barbara Sugarman, director of volunteer services and community relations director, at the Georgia Regional Hospital at 3073 Panthersville Road. Gov. Carter has frequently advocated programs to improve care for the mentally ill. (Dwight Ross Jr./AJC staff)

Credit: AJC Staff

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Credit: AJC Staff

Back in 1970, as she traveled the state with Jimmy Carter, constituents would often ask Rosalynn questions about mental health.

“I knew that if he was elected that was what I was going to work on,” she said.

And for more than five decades — starting with Central State, Georgia’s notorious psychiatric hospital, and moving on to the nation’s fragmented and often inadequate mental health system — Carter became one of Georgia’s and the nation’s most effective and persistent advocates for changes in the way mental health is perceived and treated.

“When I think about what she has done for mental health, you can’t quantify it,” said Cynthia Wainscott, past chair of Mental Health America and the former executive director of the National Mental Health Association of Georgia. “When I first started doing this, people weren’t talking about mental health. It was in the closet. But in the years that ensued, it has become a daily conversation and she is the one who cracked the door open.”

In a 2010 interview with The Atlanta Journal-Constitution, Carter admitted that up until her husband’s unsuccessful bid for governor in 1966, she knew very little about mental illness and the people who suffered from it.

“Jimmy had a cousin who was in and out of Central State,” she said. She recalled visiting the hospital with her husband for a social event. When she danced with his cousin, she didn’t know the rules prevented close contact.

“Everybody was laughing,” she said.

But it was on the campaign trail, where she was able to shake hands and hug voters, that she kept hearing stories about relatives who were living in terrible conditions at the state hospital in Milledgeville. Or, living on their own with no treatment.

First lady Rosalynn Carter testified before Congress to help get law changed that improved mental health care for Americans.(OFFICIAL WHITE HOUSE PHOTO BY KARL H. SCHUMACHER)

Credit: Karl H. Schumacher

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Credit: Karl H. Schumacher

Still, she said, in those early days it was difficult. The stigma surrounding mental illness made it hard for people to come meet with her and attend meetings, “even with me being the governor’s wife,” she told the AJC in 2017.

Steven S. Sharfstein, the former CEO of Sheppard Pratt Health Systems and the past president of the American Psychiatric Association, started advising Carter on mental health issues in 1979 while she was in the White House.

“She really engaged the issue more than one could imagine. Her leadership as a citizen, layperson and advocate was extraordinary,” Sharfstein said. “And she followed up in her post-White House years in an amazing way.”

In her three decades of leadership, the nonprofit Carter Center’s Mental Health Program became a major force, hosting an annual symposium of national mental health leaders to form policy and creating a journalism fellowship program to encourage accurate reporting about mental health issues.

“It’s just great progress, but we still have a long way to go,” Carter said in 2017. “We worked all these years to try to overcome the stigma, and it still keeps so many people from getting help. Which is so sad, because today they can recover and the overwhelming majority can become contributing citizens in the community.”

Mental health care in Georgia has a troubled history.

In 2010, after disclosures of abuse and deaths of dozens of patients at state mental hospitals, Georgia struck a settlement agreement with the Justice Department that called for it to move to a community-based system of care. The Carter Center helped craft that agreement, alongside mental health advocates. Wainscott said Carter played a key role in the agreement, particularly when she visited a meeting just as all sides were in the middle of a tense stalemate.

“She didn’t talk long, but what she said was, ‘This is really important, I hope that you will keep working and figure it out,’” Wainscott said.We were at an impasse, but her presence and moral compass brought us all to the table and the temperature of the room changed.”

Since then, the state has closed at least two psychiatric facilities and has added dozens of new community services, such as crisis stabilization units, which provide short-term care for mental- or behavioral-health crises.

Former first lady Rosalynn Carter speaks during an event for caregivers of veterans, Friday, April 11, 2014, in the East Room of the White House in Washington. First lady Michelle Obama and the wife of Vice President Joe Biden announced new steps by private and public sector organizations to help ease the heavy burden on what many say is a vital but largely invisible workforce. (Jacquelyn Martin/AP)

Credit: Jacquelyn Martin/AP

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Credit: Jacquelyn Martin/AP

In 2013, speaking at one of Carter’s mental health symposiums in Atlanta, former U.S. Health and Human Services Secretary Kathleen Sebelius announced a new federal rule requiring insurers to cover mental illness and addiction in the same way they cover other health problems.

“I often have said that if insurance covered mental illness the way other diseases like cancer or diabetes are covered, there would be less stigma against these diseases, and we all would benefit from healthier mothers, brothers, workers and friends,” Carter said at the time.

Wainscott recalls a conference at the Carter Center about 20 years ago when a woman came up to her and asked for an introduction to Carter.

The woman said one of Carter’s early books saved her life by helping her confront her own mental illnesses. She had just read Carter’s latest book, “Helping Someone with Mental Illness: A Compassionate Guide for Family, Friends, and Caregivers.” The book had helped her confront her son’s mental illness and save his life.

“When they met,” Wainscott said, “they both stood there and cried.”

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