Stephanie Hepburn is a writer in New Orleans. She is the editor in chief of #CrisisTalk. You can reach her at .
When Rosemary Kennedy was 23 years old, her father had her lobotomized. She was never the same. Her story shaped her brother’s views on deinstitutionalization and community mental health and had a direct impact on parity legislation because, after all, her brother was John F. Kennedy, the 35th president of the United States.
Despite persistent stigma, William Hudock, a former senior public health advisor at SAMHSA’s Center for Mental Health Services, points out that many Americans have a loved one who has struggled with a mental health or substance use challenge or navigated the crisis care system. “That becomes important to the politics of [healthcare] legislation,” he said, adding that President Kennedy helped establish parity within the Federal Employees Health Benefits Program’s two nationwide plans, although the impact wasn’t long-lasting. His sister Rosemary had intellectual disabilities and, according to Kate Clifford Larson, author of “Rosemary: The Hidden Kennedy Daughter,” mental health challenges. Touted for its ability to calm patients but also denounced by the American Medical Association, Joe Kennedy, Rose’s father, had his adult daughter lobotomized, leaving her permanently physically and intellectually disabled. Afterward, she was institutionalized and ended up living out the remainder of her long life at a private house the Kennedys built on the grounds of Saint Coletta School for Exceptional Children in Jefferson, Wisconsin.
In an interview with journalist Eileen McNamara, Clifford Larson explained why she believes Joe Kennedy went ahead and had his eldest daughter lobotomized. “I think he felt he needed to silence her in a way and make her more, as the doctors would have told him, more compliant, more pliable, less emotional,” she said, noting that the lobotomy was done in 1941 when it was common practice for fathers, husbands, brothers to make medical care decisions for women.
On Feb. 5, 1963, President Kennedy’s special message to Congress urged its members to launch a new mental health program. “If we launch a broad new mental health program now, it will be possible within a decade or two to reduce the number of patients now under custodial care by 50% or more.”
“Many more mentally ill can be helped to remain in their own homes without hardship to themselves or their families. Those who are hospitalized can be helped to return to their own communities. All but a small proportion can be restored to useful life. We can spare them and their families much of the misery which mental illness now entails. We can save public funds and we can conserve our manpower resources.”
Kennedy signed the Community Mental Health Centers Act into law on Oct. 31, 1963. It would be the last bill he would ever sign. He was assassinated three weeks later.
How health insurance came to be in the U.S. is unique. From the onset, mental health and substance use coverage were sidelined. “Insurance is how we protect people against an uncertain future,” said Hudock. “The aim of insurance is to share that risk — what we want to do is find a way so that everybody pays into the system and everybody gets the benefit of the system.” He has ample expertise with insurers, having been the director at CIGNA and vice president of underwriting and pricing at CareFirst BlueCross BlueShield. In 2023, Hudock authored a behavioral health parity playbook with Arlene Hahn Stephenson that dives into the history of federal and state parity law.
Insurance can be done through public or private entities. Like many other nations, in the United States, the government is the payer for a group of people who meet specific criteria. “That can be age, disability or income-based,” he said. Where there’s a diversion is that, in the U.S., employers directly contract for and provide private insurance benefits to their employees. “That’s a uniquely American thing,” said Hudock, adding that employer-based healthcare arose during World War II when, in 1942, President Franklin D. Roosevelt froze wages to avoid inflation. Fearful of labor strikes, the National War Labor Board exempted employer-sponsored health benefits and so, to retain and attract employees, employers began offering health insurance. The following year, the Internal Revenue Service exempted employers’ contributions to group health insurance policies from taxation, making the benefit appealing to employees and employers alike while also complying with the wage freeze.
Another area where the U.S. differs from other wealthy, industrialized nations is that the government doesn’t provide universal healthcare. “Other countries believe in community responsibility, while we believe in individual freedom,” said Hudock, adding that the result is tension over who pays for care and sometimes scapegoating those society deems responsible for their own illnesses or who they believe don’t deserve coverage. Among them are people struggling with substance use and mental health disorders. “As if, somehow, they’re flawed or at fault for their situation, so we shouldn’t consider it community responsibility but rather personal responsibility.” The consequence hasn’t just been stigmatization but also insurance coverage exclusion or lack of reimbursement parity.
On the heels of the Community Mental Health Centers Act, when the Social Security Amendments of 1965 established Medicaid, it included the long-standing exclusionary rule that federal reimbursement isn’t available for “institution for mental diseases” services — specialized mental health or substance use disorder services in facilities or settings with over 16 beds — for people ages 22 to 64. For example, Medicaid could pay for all or part of inpatient hospital and nursing facility services except those in an institution for mental diseases. The rationale was twofold: deinstitutionalization — by limiting federal mental healthcare institutional funding, states would be pushed to create community-based services — and cost.
When explaining the amendments’ removal of federal participation limitations for people 65 and older with mental illness, Congress wrote that the longtime exclusion of patients in public mental health hospitals from public assistance eligibility was because “long-term care in such hospitals had traditionally been accepted as a responsibility of the states,” which had resulted in increased community-based care such as in-home treatment and community mental health centers. “This latter type of facility,” said Congress, “is being particularly encouraged by federal help under the Community Mental Health Centers Act of 1963.” (In May, legislators reintroduced the Michella Alyssa Go Act, bipartisan legislation that would expand the institution for mental diseases ceiling, allowing Medicaid to cover care facilities with 36 beds or less.)
During this time, similar to today’s reaching across the aisle to help 988 become a reality, there was bipartisan support for mental health legislation. “There was a fair degree of unanimity between the Republicans and the Democrats up through about the mid-seventies,” said Hudock, with the concept of insurance benefit parity hearkening back to Kennedy directing the Civil Service Commission to require insurance parity in the Federal Employees Health Benefits Program, the payer for federal employees, for mental illness and “general medical care” coverage. The program offered parity benefits until 1975, when mental health and substance use care coverage decreased. This only worsened as America ushered in the ‘80s with the “Just Say No” anti-drug campaign. “The campaign didn’t support treatment for addiction disorders but instead extolled the belief that it was a personal responsibility to prevent and address your addiction,” said Hudock.
In the ‘90s, the pendulum swung back with the bipartisan Mental Health Parity Act and President Bill Clinton directing the Office of Personnel Management, formerly the Civil Service Commission, to implement comprehensive mental health and substance use parity in the Federal Employees Health Benefits Program. “There was a belief that we had to start addressing the concept of insurance parity,” said Hudock. “Parity in insurance means that things are basically covered at the same level. That does not mean, however, that it’s covered at an adequate level.”
At the turn of the millennium, President George W. Bush created the New Freedom Commission on Mental Health, tasking it with studying the mental health service delivery system. In its final report, the commission strongly supported Bush’s call for “federal legislation to provide full parity between insurance coverage for mental health care and for physical health care.” The year prior, in New Mexico, Bush had said, “Our country must make a commitment: Americans with mental illness deserve our understanding, and they deserve excellent care.” “They deserve a health care system that treats their illness with the same urgency as a physical illness.”
The Mental Health Parity Act and the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008 applied the concept of insurance parity to all large employers who offered both physical health and behavioral health benefits in their insurance plans. In 2010, the Patient Protection and Affordable Care Act extended these protections more broadly to small employer plans and to Medicaid plans. A decade later, Congress passed the Strengthening Behavioral Health Parity Act to fortify parity enforcement. However, what drove these acts to fruition was highly personal.
Senators Pete V. Domenici, R-N.M., and Paul Wellstone, D-Minn., who both witnessed the chasms created by healthcare inequity, helped spearhead and were instrumental in federal parity legislation. Their personal experiences mirrored one another, both having loved ones who had mental health crises during their first year of college. Domenici’s daughter, Clare, developed schizophrenia and, according to former Senate majority leader Tom Daschle, Wellstone’s older brother, Stephen, had a “severe mental breakdown” that led to “two years in mental hospitals.” When interviewed by New York Times reporter Deborah Sontag, Domenici said he likely wouldn’t have become a champion for mental health if it hadn’t been for his daughter, saying, “I don’t believe the subject ever would have come up.”
As mental health and substance use challenges among young people have risen, federal and state legislators have been affected not only by their own experiences but also by those of their friends and constituents. Utah State Sen. Thatcher told CrisisTalk of a late-night phone call he received from a constituent who is also a close friend he’s known since high school. His friend’s voice cracked as he shared with Thatcher that his 15-year-old son woke him in the night and handed him a noose. “I’ve been up all night trying not to kill myself,” the teen told his father. Thatcher’s hope for 988 is that it creates parity, shattering once and for all the wall of stigma faced by so many Americans. “It offers a future where people know where to call for a behavioral health emergency, just like they do with a medical emergency,” he said. “And by putting it on par with medical crises, we, as a society, will hopefully begin to treat our neighbors with the same respect and kindness when they face a psychiatric emergency as when they face a medical one.”
In the interview with Sontag, which took place a month before Wellstone died in a plane crash in 2002, he called he and Domenici “the odd couple,” but they weren’t the only ones. Among their motley crew of Republicans and Democrats, all had a personal story, their lives intersecting in an unlikely way. “There has been a personal, crystallizing experience in each of our lives,” Wellstone told Sontag. ”You almost wish it didn’t have to work that way, that all of us would care deeply anyway about people who were vulnerable and not getting the care they need. But this kind of thing happens a lot in politics for fully human reasons.”
Hudock adds, “So many of us have had these personal experiences.”
