RIP Rosalynn Carter, First Lady of Mental Health

Monday, November 20, 2023

By Don Sapatkin

Also in today’s Daily: Slots for children needing long-term residential mental health treatment are disappearing. A little anxiety, it turns out, is normal and healthy. And a mother, a resident of the Hoopa Valley reservation, describes the addiction that shattered her family, and her tribe.

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Rosalynn Carter, the first lady of mental health, has died at 96

Updates with quote from Jimmy Carter in the seventh paragraph.

Over a span of span of six decades, former First Lady Rosalynn Carter was a tireless advocate who fought to transform the way that mental illness – and the people who experience mental health conditions – were viewed and treated.

She worked for an end to the discrimination and stigma experienced by people suffering with a mental illness and sought to change the inequitable systems that kept people from getting the help they needed.

Mrs. Carter died Sunday at the age of 96 just two days after her family announced that she had entered hospice care. Her husband of 77 years, former President Jimmy Carter, entered hospice care in February. He turned 99 last month.

“I’ve worked on mental health issues since my husband was governor of Georgia, which is a very long time,” Mrs. Carter said in a video tribute released by the Carter Center. “I’ve worked on stigma and tried to overcome stigma because it holds back progress in the field. People don’t get help when they need it because of stigma.”

The Carters were partners in their work to create change in the mental health arena, although it was clear that Mrs. Carter, who had a cousin with mental illness, was the one pushing the mental health agenda. In a 2008 interview for the Carter Center’s blog, she said her advocacy began during her husband’s campaign for governor in 1970, when people often asked her what he would do about mental health.

“One day, when Jimmy was speaking at a rally, I got in line with everybody else to shake hands with him,” she said in the 2008 interview. “He saw who I was, grinned, and asked, ‘What are you doing here?’ ‘I came to see what you are going to do about mental health when you are governor,’ I replied.” 

Former President Carter released a statement that spoke to their partnership, in their work and in their lives. “Rosalynn was my equal partner in everything I ever accomplished,” he said in the statement. “She gave me wise guidance and encouragement when I needed it. As long as Rosalynn was in the world, I always knew somebody loved and supported me.”

Mrs. Carter served on a commission to improve mental health services created by Gov. Jimmy Carter in 1971. Six years later, less than a month after he had become president, Carter issued an executive order creating a President’s Commission on Mental Health, and Rosalynn became its honorary chair. She would later become the second first lady to testify before Congress, where she spoke about the need for mental health reform.

The commission’s report helped pave the way for legislation, the Mental Health Systems Act, which passed Congress in October 1980. It authorized grants for community mental health centers and aimed to improve services to children, adolescents and the elderly, as well as to rural and low-income urban communities.

Less than a month after its passage, Ronald Reagan was elected president and in 1981, passed a budget act that repealed it, ending the Carters’ efforts to create national mental health reform.

Rosalynn Carter’s efforts to change the mental health system did not end there, however. At the Carter Center, founded by the couple in 1982 to continue their work on fostering peace and improving health in the U.S. and around the world, mental health became a key focus. Mrs. Carter created an annual symposium on mental health, a mental health task force to create policy change and, in 1996, the Rosalynn Carter Fellowships for Mental Health Journalism.

I was a 2005-2006 fellow, and it was one of the high points of my career. MindSite News reporter Josh McGhee is a current fellow.

Former CNN President Tom Johnson, who disclosed his own battle with depression shortly after retiring from the news channel in 2001, credits Rosalynn Carter with being a major catalyst of mental health change.

“One day I predict that mental illness will be treated no differently than other physical illness,” he said in the Carter Center video tribute. “When that wonderful new era finally arrives, it will be in significant measure due to Rosalynn Carter.

The tribute also includes a final thought from Rosalynn Carter.

“My dream for the future would be peace in the world, and freedom from sickness,” she said. “I don’t think that will come about any time soon, but at least I think the best thing we could do is work toward that goal.”

–Rob Waters

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Long-term residential treatment for kids is getting harder to find

Stacy Ballard’s 10-year-old adoptive son has reactive attachment disorder. The condition can make it difficult for children to form an attachment with their family, and sometimes leads to extreme violence. “He was walking around our house at night thinking about killing all of us,” Ballard told KFF Health News. 

Since June, he’s been getting intense behavioral therapy at a facility in Montana where kids stay for up to 18 months learning to build healthy relationships. He has made considerable progress. The program, Intermountain Residential, is one of about a dozen that provide long-term treatment for children under 10, according to the National Association of Therapeutic Schools and Programs (NATSAP). But the nonprofit Intermountain announced three months ago that it would close its residential program, then said it would downsize – from 32 beds to eight – while admitting it still might not be sustainable.

“We are seeing a lot of long-term facilities moving to what they call the short-term, intensive outpatient. You’re able to get insurance money easier,” said Megan Stokes, who served as NATSAP’s executive director for nine years. She said she knows of 11 long-term programs for children 14 and under that have shifted entirely to shorter stays of 30 to 90 days. They are cheaper to run, insurers will pay faster, and facilities can treat more patients and make more money, she said.

But there’s a downside – and not just insufficient treatment. Kids who don’t succeed at short-term treatment or regress after discharge get “labeled as treatment-resistant, when that kid wasn’t treatment-resistant,” Stokes said. Kids labeled that way can then be denied admission to other short-term programs. Ballard, meanwhile, wants to make sure that her son continues in long-term treatment but has so far been unable to find another program.

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Anxiety levels are soaring. Maybe it’s time for a reframe

A little anxiety isn’t necessarily bad. We evolved with anxiety as the body’s natural reaction to stress, danger or something new. Rather than getting rid of low-level anxiety, we need to learn how to live with it, psychologists told USA Today.

They believe that Americans have been taught that anxiety is unnatural, so they’re less likely to tolerate being uncomfortable. The fears are greater than the actual threat: if you judge yourself for being anxious and then catastrophize about it, your anxiety gets worse. Normal nervousness can snowball into an anxiety disorder if you become excessively fearful and start avoiding situations that might trigger your symptoms. Some experts also say that modernity has bred mass, low-level anxiety: Mastering ever-changing technology and beating the competition at work leads to external success like fame and fortune but not internal success like self-development and emotional stability.

The notion that having some anxiety isn’t necessarily a problem has been around for years – but the call to change your relationship with it is finally gaining some traction. Cognitive behavioral therapy and other treatments can help people understand that normal living involves unpredictability, lack of control and feelings of nervousness – and to accept it. “People want to feel good and when we don’t feel good, that makes us nervous,” said Kia-Rai Prewitt, a psychologist at the Cleveland Clinic’s Center for Adult Behavioral Health. “Just because it feels uncomfortable, doesn’t mean it’s wrong.”

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Addiction ravages a family, and a tribe: ‘Will my sons make it?’

Judith Surber wishes she could turn the clock back “to B.D.” – before drugs. “Before my husband became addicted. Then two of my sons. Then my grandchild,” she writes in an interactive, photo-filled essay for the New York Times. “Somehow the hollowness of their cheeks, their pale skin, sores and swelling don’t register in my brain,” she says of her younger boys, now in their 30s. “When I look at my sons, I see all that I’ve known them to be and all of what could have been or could still be if it weren’t for OxyContin, then heroin and now fentanyl.”

Surber, 61, raised her family on the Hoopa Valley Indian Reservation. It was long shielded from outside influences by its remote location: a secluded valley in far Northern California with the Trinity River running through it. Then the nation’s opioid epidemic ran through it, too, shattering the tribe and its families – with similar swaths of destruction on reservations around the country. In 2021, the CDC’s national mortality database showed that American Indians and Alaska Natives had a far higher rate of total overdose deaths than any other racial or ethnic group.

Suber became a widow after 38 years of marriage to a man who worked in the logging industry and was prescribed OxyContin – then touted as a miracle drug with a low risk of dependency – after an accident. Her husband was so functional she didn’t know for years that he had moved on to heroin. Her sons Roger, 18, and Cory, 15, started using oxy recreationally, then progressed to serious addiction as family life became a series of crises. She wonders: “Will my sons make it?” Her teenage granddaughter, who overdosed on fentanyl three times in the summer of 2022, was admitted to an addiction treatment facility in Utah. She recently left.

Surber is the author of “Reservation High,” a fictional account of Native life, substance abuse and recovery, and now works as the medication-assisted-treatment manager for the tribal health clinic, K’ima:w Medical Center. “Every time I hear a siren or my phone rings at night, I have a flash of fear that hits in the deep pit of my stomach,” she writes. “If I can help one person get off opioids, then I can still hold out hope for my children.”

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In other news…

Precipitous salmon declines in Alaska’s Yukon and Kuskokwim rivers are harming local economies, food security and culture, as well as the health of tribal members who are switching to store-bought processed foods. The salmon crisis also is hurting mental health, the Alaska Beacon reported from a field hearing held by Sen. Lisa Murkowski. One man described salmon harvesting as part of a holistic approach to wellness: “When we’re forced to deviate from our traditional ways of life, it only amplifies our unwellness.” A woman spoke about how a return to salmon-harvesting traditions helped her recover from a serious opioid addiction, making her life feel whole and meaningful again. “With the decline in salmon numbers comes further separation from our culture. How is this going to affect our mental health?” she said. “I fear for our people.”

Children of mothers who experienced high stress, anxiety, or depression during pregnancy may have a greater risk of mental health and behavior issues throughout childhood and adolescence, Neuroscience News reported, citing research in Psychological Bulletin that analyzed data from 55 studies with more than 45,000 participants. The study linked maternal distress during pregnancy to ADHD symptoms and aggression, an effect that persisted even when postnatal psychological distress was considered. Another study, in the Journal of Child Psychology and Psychiatry, sought to understand how trauma gets passed from one generation to the next and reported similar findings.

The documentary “Stranger in My Own Skin” covers the life of English rock star Pete Doherty – and his descent into hell just as his popularity was peaking. It explores the recreational beginnings of his drug use through his full-blown heroin addiction, according to an in-depth review in The Conversation. Writer Sally Marlow, professor of public understanding of mental health research at King’s College London, quotes Doherty’s explanation: “Hard drugs entered my life and slowly, slowly, quickly took control.”

Accountable care organizations (ACOs) have been touted for their efforts to improve quality and access to care by aligning incentives among clinicians, hospitals and providers. But in traditional Medicare, where they are used widely, being enrolled in an ACO was not linked with any measurable improvements in patients’ anxiety or depression, according to a Behavioral Health Business report on the findings of a study in Health Affairs. In fact, researchers found that new ACO enrollees were 24% less likely to receive treatment for depression or anxiety at an evaluation and management visit during their first year, mostly due to lower rates of primary care visits that addressed depression and anxiety.

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If you or someone you know is in crisis or experiencing suicidal thoughts, call or text 988 to reach the 988 Suicide & Crisis Lifeline and connect in English or Spanish. If you’re a veteran press 1. If you’re deaf or hard of hearing dial 711, then 988. Services are free and available 24/7.

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