Rosalynn Carter’s secret to mental health care reform.

This essay is adapted from Fighting For Recovery: An Activists’ History of Mental Health Reform by Phyllis Vine…

Rosalynn Carter’s secret to mental health care reform.

This essay is adapted from Fighting For Recovery: An Activists’ History of Mental Health Reform by Phyllis Vine (Beacon Press, 2022). Reprinted with permission from Beacon Press.

In Plains, Georgia, a town of 600, most everybody knew everybody, and all knew Jimmy Carter’s cousin Tommy. They “would know [when] he was in trouble,” Rosalynn Carter said, because that’s when the police came. They would “unceremoniously lay him across the backseat of their car, give him a shot, sometimes even handcuff him or put him in a straitjacket, and take him back to the hospital.” Tommy’s erratic behavior, and the way he was treated, left an impression on her.

After Jimmy and Rosalynn married in 1946, they would visit Tommy at Georgia Central State, which had opened as the Georgia Lunatic Asylum a decade before the Civil War. Located in Milledgeville, it spread across 3,772 acres. Eventually more than 12,000 people would reside there, many in the original brick and wooden buildings in which the wind whistled through walls and windows. The signatures of two doctors and a local attorney were all that was needed to confine someone for years, or indefinitely. Black and white, male and female, patients lived in separate quarters where everything depended on the whims of superintendents or politicians.

Milledgeville boasted that it was the world’s largest insane asylum. It had its own ZIP code, railroad stop, post office, chapel, mortuary, and rows of nameless graves with numbered markers. And it was synonymous with terror. Treated as inmates, patients could be starved or sterilized, and many fell victim to pellagra, tuberculosis, malaria, or lobotomies. There were cold bath treatments for “maniacal exhaustion”; escapees could be found dead in the swamps or on the riverbanks, and mere mention of its name lit fear in naughty children.

Visiting Tommy taught Rosalynn Carter a lot. After Jimmy’s election as governor of Georgia in 1970, she chose mental health advocacy as the project worthy of her attention as the state’s first lady. To learn more about the issue, she volunteered with the Georgia Mental Health Association, assisted children with developmental disabilities, worked with the elderly, and helped people wanting to become sober. Volunteering at Atlanta’s Georgia Regional Hospital filled one day a week of her unofficial schedule. In her official capacity, she served on Georgia’s mental health commission to improve services. In 10 months, she visited all 12 of the state’s community mental health centers as well as the regional state hospitals in Savannah and Augusta, and she returned to Milledgeville to tour Georgia Central State. When she was later asked about the high point of her years as a governor’s wife, she replied, “My work with the mentally ill.”

When stumping for Jimmy’s presidential campaign, she drew from her experience and knowledge to lament the nation’s failures to meet its obligations. Among Americans, 15 percent suffered with depression. Others went from a hospital’s backward to “dingy welfare hotels and boarding houses.” She excoriated Presidents Nixon and Ford for their respective cuts to the National Institute of Mental Health. “Health is one of the matters that public officials can do something about,” she declared at a stop in California. During her husband’s term as governor, community mental health centers grew five-fold and the number of hospitalized people declined by about 30 percent.

Carter came to Washington prepared to assess the nation’s mental health programs and policy. She was experienced and committed, and there were no doubts that the need was substantial. A 1977 report from the Government Accounting Office even said “government needs to do more.” A throng of experts working in science and medicine, government and politics agreed. But their separate interests often belied concurrent goals, and, to secure lasting reform, she often had to overcome obstacles that would have stopped a lesser talent. As first lady, she accomplished much of her goal of advancing the federal government’s responsibility toward meeting the needs of mentally ill people—only to see how quickly a shift in politics could later threaten reform.

In mid-February 1977, the Oval Office launched the President’s Commission on Mental Health to begin the process. Their charge was broad in scope, short on time, and capped at a frugal $100,000 for a volunteer-assisted staff. Rosalynn was supposed to be its chair, until the Justice Department said nepotism rules prevented the first lady from chairing the commission. Instead, Tom Bryant , a doctor with a law degree heading the Drug Abuse Council, would become head of the PCMH. But everybody, especially Rosalynn Carter, knew who was in charge.

The PCMH was made up of psychiatrists, educators, ministers, nurses, and social workers. There was just one former patient: Priscilla Allen. A Phi Beta Kappa graduate of Stanford, she had been gainfully employed before her first hospitalization in 1960, but not since. She desperately wanted her perspective as a recovering patient to inform discussions about programs and policy. There were times, however, that Allen felt diminished, that her role on the commission was little more than a token. No one else had to invent a fictitious reference on a job application, or lie to rent an apartment because the building’s manager didn’t like people who had once been in Napa State Hospital. This was all the more reason she thought other commissioners had a lot to learn from her, and she sometimes adopted the role of the group’s conscience.

Allen fell easily into verbal combat with the other commissioners. The first instance followed the opening meeting in Chicago at the Institute of Psychiatry of Northwestern Memorial Hospital, which didn’t bear the telltale sounds and odors of a typical mental health institution. Staff wore street clothes. Conversations weren’t interrupted by the clangs or buzzers of locked doors. It was almost too nice, with brightly painted walls, modern furniture, and paintings. Even the reporter covering the meeting noted it was among the more handsomely appointed mental health centers. Allen described it as “immaculate, highly decorous, [and] beautifully carpeted.” It seemed staged to her, “more bureaucratic than friendly.”

After commissioners concluded their scheduled conversation with officials running the center, they disbanded. Allen, on her own, also visited an off-site community treatment program, Sustaining Care. The commissioners had declined an earlier invitation to visit, and the staff was surprised to see her. Allen didn’t need a formal tour. She knew the ropes and poured herself a cup of coffee before settling into a conversation with seven patients who shared their stories about looking for jobs or their fears about being sent to nursing homes. The commission needed to hear from these people who had persistent problems and viewpoints they hadn’t heard from Institute of Psychiatry doctors. They were of the community, the “people who have been traditionally excluded,” she said. And now the PCMH had ignored them. She expressed her doubts about how the “commission has operated, and will operate in the future.”

In the end, Allen need not have worried. The Report to the President was released in April 1978, and the breadth, depth, and costs earned press attention. “Carter Backs a $500 Million Plan to Improve Mental Health Care,” wrote the New York Times. Optimistically, the president called it an “investment in the future.” Big numbers filled stories: 15 percent of the population needed mental health services, 2 million people had schizophrenia, one-quarter of the population was depressed. And America was spending $17 billion. For what?

The report spoke of a shortage of psychiatrists forecasting an ill-fated future. Rural America would be particularly hard hit, and too many federal dollars were spent on brick-and-mortar near-empty hospitals. Recommendations—117 in all—included establishing accountability and using contracts linked to performance with outcomes. To publicize the recommendations, Rosalynn Carter made the rounds of national television. PBS Newshour’s Jim Lehrer introduced the topic saying millions of Americans were “deplorably served.” ABC’s David Hartman seemed dubioius about the report’s contention that people discharged from hospitals could actually live in the community. She easily addressed that objection during an interview on Good Morning America. But it was Newsweek’s reference to patients as “inmates,” that provoked her sense of justice about stigma. Inmates, she said, “was a word for criminals, not mental patients.”

In the meantime, opinion polls showed the president’s popularity slipping. His presidential campaign had promised reforms for health insurance, but in two years he hadn’t delivered. It hung in the air when in December 1978 1,600 Democrats went to Memphis for a midterm convention. Sen. Ted Kennedy was closely associated with insurance reform, and he disagreed with Carter about many things, including the pace of change. Carter wanted a gradual policy. Kennedy wanted speed. Insurance reform had complicated the 1976 campaign, and Carter had struck a bargain for Kennedy’s help delivering union support. After the election, it seemed to Kennedy that he had been shut out, and now he nursed wounds of betrayal. He wanted Carter to deliver immediately.

Rosalynn Carter was due to appear before the Senate Subcommittee on Health and Scientific Research to discuss the PCMH Report to the President. Kennedy was the chair. The president’s staff was concerned and cautious. They knew the senator intended to introduce a bill for national health insurance, and they worried that he might treat Rosalynn Carter as a pawn to push spending the president didn’t want. She disagreed, thinking an appearance would build momentum for the mental health reform bill she expected to reach Congress soon. Bryant and her aide, Kathy Cade, prepared her, reviewing details that she would later summon as the honorary chairperson of the PCMH. She wanted to glow under the spotlight on mental health reform, but the president’s team feared a double-cross and worried that Kennedy’s light might dim hers.

Not since Eleanor Roosevelt had a first lady appeared at a congressional hearing. That morning Rosalynn Carter would be on public display. She wore a crisp, long-sleeved blouse with pointed collars and sat at a table with a glass of water at her elbow, a pile of paper in plain view, and a tangle of microphones capturing every word. Opposite her sat Kennedy. He opened with a roster of facts and figures about people needing mental health services, and he cited the fragmentation and inefficiency of existing separate programs. “We have taken people out of institutions but we have failed to provide them the community support services they need,” he said. For solutions, he turned to the first lady. “There is no finer place to begin,” Kennedy said, than with the PCMH’s recommendations. He credited the “energy and skill, the dedication and compassion of its honorary chairperson, Rosalynn Carter.”

For the next hour and a half, Rosalynn Carter fielded questions about the commission’s work. Visibly nervous at first, with her soft voice quavering at times, she used her hands to emphasize what she had learned from citizens. Americans sought services, longed for research, hoped for prevention, and demanded parity. The more she spoke, the more confident she became until she soared, showing she was clearly in command of her material.

Instead of unease, she found bipartisan sympathy. Pennsylvania’s ranking Republican, Sen. Richard Schweiker, punctuated his remarks with phrases like “we have failed,” “appalling examples of neglect,” “services are lacking.” He referenced the Philadelphia Inquirer’s exposé, “Movable Snakepits,” and introduced it into the record. “The system of mental health remains a national disgrace,” he said. Sen. Howard Metzenbaum of Ohio asked about helping the nation’s families. Sen. Jennings Randolph from West Virginia spoke about his next-door neighbors who were exhausted struggling to keep their disabled daughter at home. Kennedy revealed his own experience with stigma, speaking in tones that were deeply personal:

I think of my sister and the difficulties in the very early years of her life being in a large family and trying to involve her in the activities with the other children of her family—the schools and other kinds of occasions. … We must take the issues of mental illness and mental retardation out of the closet and into the sunlight of discussion and hopefully lead to constructive recommendations and movement.

This led Rosalynn Carter to recall something Priscilla Allen had said at the commission’s first meeting. They’d been sitting around a table, introducing themselves. The press was present, and Allen was painfully self-conscious. She’d wanted her fellow commissioners to know she was a former patient. But she didn’t know she “was going to have to tell everybody in the United States.” Allen lived with stigma every day, Carter said. “It made a great impression on the whole commission.”

Tactfully, she brushed aside problems associated with the viability of JFK’s community mental health centers. They had not met the challenge. A recent NIMH survey reported that fewer than one person in five with a chronic mental illness had received services after leaving a state hospital; only one-third of the scheduled clinics had been built. The menu of services seemed of dubious value to the “underserved citizens.” But she didn’t want to linger on the struggles of mental health centers at this hearing. Instead, she said, “We tried very hard to preserve that which is good, while at the same time developing a greater capacity to meet the needs of the unserved and underserved.” That satisfied Kennedy. At a later date, at another hearing, he would dive into the community mental health centers.

For now, he listened respectfully and attentively while Rosalynn Carter summarized the Report to the President—the status of research, finances, prevention, and education, plus necessary aspects of revamping state and federal responsibilities. “It is an excellent summary,” he exclaimed. Twice he called her eloquent. He praised her “personal caring and concern.” Later, posing for pictures, they appeared relaxed, not postured. That afternoon Kennedy called the president to praise the first lady’s performance. In her prepared statement, Rosalynn Carter said she hoped senators would help implement the Report to the President. She wanted 1979 to be “the year a new national commitment is made to the proper care and treatment of the mentally ill.”

Drafting a mental health bill, however, would not be as easy as Rosalynn Carter had hoped.

The work crawled. Unstable politics contributed to delays when the president reshuffled the Department of Health and Human Services, fired Secretary Joseph Califano, and replaced him with Patricia Harris a more sympathetic secretary. Sen. Ted Kennedy added a layer of intrigue when he announced he would seek the Democratic Party’s nomination for president. Even friends and allies from the established coalition of state and national organizations slowed the momentum when they asked for changes in the bill to make it more favorable to their respective mission.

Early in the new year, January 1980, Rosalynn Carter learned of another blow to the law on which she had her heart set. It seemed that the West Wing’s list of legislative priorities had omitted mental health. This was unspeakable, and she shot over a note that this had to be “Highest Presidential Priority.”

With a ticking clock, travel obligations for the entire month of February, and political trickery threatening to upend agreements, the first lady’s staff went into overdrive with meetings, phone calls and pleas to enable the House subcommittee to squeak out a bill in time. In the Senate, a junior senator from North Carolina threatened to filibuster. He believed states, not the federal government, should be responsible for enforcing civil rights, including matters pertaining to involuntary mechanical restraints, or isolation and seclusion rooms.

This was unanticipated. A filibuster could kill the entire bill. There was no time, no breathing space, and this latest obstacle could smother reforms based on four years of hearings listening to America’s citizens. It would erase the added dollars for research. It would dishonor and discredit frontline service providers. All was at risk, and the filibuster additionally threatened protecting rights of persons deemed mentally ill. And it became personal for Kennedy, a leader in the Senate’s campaign for federal protections of patients’ rights

For Rosalynn Carter, Ted Kennedy would blink. This was more than a partisan fight, more than disappointment with the president, more than his thwarted ambition to become president. This was as much a fulfilment of his late brother’s last public pledge as it was his own deeply held commitment about better health for all. He alone could change the bill’s fate, but it required withdrawing federal oversight of patient rights. This he did, allowing the Senate to vote on the Mental Health Systems Act in August, with a passing vote of 97 to 3. The House followed in September, with a vote of 277 to 15. Congress then left for the campaign trails.

This decision cost Kennedy the goodwill of activists, who felt betrayed. But there was too much to lose. The MHSA embedded many of the principles the commission had wanted. Grants funded services for a broad group of people with a chronic mental illness; performance contracts required planning, assessments, and evaluations. The MHSA recognized patients’ rights even if states, rather than the federal government, handled enforcement. It tweaked the community mental health centers. Labor would be protected, even if it meant people were working in obsolete facilities that should have been shut. NIMH would establish an administrator for minority concerns. It would open a prevention center. The bill exemplified the sausage making of legislation, and it hadn’t passed nearly as fast as the first lady had hoped, but it was now the law of the land.

President Carter intended to sign this legislation immediately, and they chose a community mental health center in Annandale, Virginia, a Washington suburb, for the signing ceremony a week later. On the afternoon of Oct. 7, 1980, President and Mrs. Carter, along with HHS

secretary Patricia Harris, Congressman Henry Waxman, and four aides, boarded Marine One. Senator Kennedy drove from his home in Virginia, along with his advisor, Stuart Shapiro. National Alliance on Mental Illness’s new president, Shirley Starr, attended, as did Mental Health Law Project attorneys Leslie Scallet and Paul Friedman.

The event lasted barely 20 minutes. The New York Times reported the attendees predictably “all praised each other.” The first lady beamed, the president flashed his smile, and between them, on the platform, was Kennedy appearing pensive, preoccupied, perhaps even perplexed. Despite obvious tensions between Kennedy and the president, Peter Bourne and Rosalynn Carter believed he had worked very hard on behalf of the MHSA. The president was unconvinced, and he would remain stubbornly so.

When Rosalynn Carter took to the stump to campaign for her husband’s reelection, the polls had the president trailing California’s former governor, Ronald Reagan, by seven points. While President Carter visited battleground states, she swept through seven cities in a desperate but futile effort to hold the White House. On Nov. 4, 1980, Reagan scored one of history’s biggest landslides. For Rosalynn Carter, it was a profound disappointment.

Reagan’s election punctured optimism for many in the mental health community. To further his campaign promise to reshape government, it required trimming $40 billion from Carter’s $650 billion budget.

The cover of the book Fighting for Recovery: An Activists' History of Mental Health Reform by Phyllis Vine features a photo of a crowd of protesters.

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As a candidate Reagan said he would balance the budget, cut taxes, increase military spending, control inflation, and bring government to a manageable size. And as president, he did it. The MHSA was effectively dismantled. The Community Support Programs would be purged. Research for social programs would end. There would be million-dollar cuts to basic research. And one of Pardes’ special priorities, training the next generation of mental health professionals, was also in the crosshairs. When added together, the cuts amounted to half of NIMH’s budget.

Back in Plains, Rosalynn Carter watched the demolition of a reform she had ushered. She knew the bill was imperfect, as she writes in Within Our Reach, but she also believed “it would have made a significant difference.” Stepping away from Washington may have felt devastating, but it did not crush her ambitions for reform. Two years later, the former president and first lady founded the mission-driven Carter Center sponsoring humanitarian initiatives. With that perch, in 1985, Rosalynn organized a mental health program which sponsored an initial meeting on stigma. For the next three decades, the Rosalynn Carter Symposium on Mental Health met annually and engaged people in the vast arenas of research, policy and applied services. A decade later the center organized a fellowship training program teaching journalists about mental health. As she continued to speak, advise, and write about mental health—four books in all—it was apparent that, despite the dismantling of the law she had urged, her influence never waned. While many considered her the first lady of Plains, she also remained the first lady of mental health reform.

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