Signed on Oct. 31, 1963, weeks before Kennedy was assassinated, the legislation aimed to build mental health centers accessible to all Americans so that those with mental illnesses could be treated while working and living at home, rather than being kept in neglectful and often abusive state institutions, sometimes for years on end.
Kennedy said when he signed the bill that the legislation to build 1,500 centers would mean the population of those living in state mental hospitals — at that time more than 500,000 people — could be cut in half. In a special message to Congress earlier that year, he said the idea was to successfully and quickly treat patients in their own communities and then return them to "a useful place in society."
Recent deadly mass shootings, including at the Washington Navy Yard and a Colorado movie theater, have been perpetrated by men who were apparently not being adequately treated for serious mental illnesses. Those tragedies have focused public attention on the mental health system and made clear that Kennedy's vision was never fully realized.
The legislation did help to usher in positive life-altering changes for people with serious illnesses such as schizophrenia, many of whom now live normal, productive lives with jobs and families. In 1963, the average stay in a state institution for someone with schizophrenia was 11 years. But only half of the proposed centers were ever built, and those were never fully funded.
Meanwhile, about 90 percent of beds have been cut at state hospitals, according to Paul Appelbaum, a Columbia University psychiatry professor and expert in how the law affects the practice of medicine. In many cases, several mental health experts said, that has left nowhere for the sickest people to turn, so they end up homeless, abusing substances or in prison. The three largest mental health providers in the nation today are jails: Cook County in Illinois, Los Angeles County and Rikers Island in New York.
"The rhetoric was very highfalutin. The reality was a little more complicated, and the funds that were provided were not adequate to the task," said Steven Sharfstein, president and CEO of Sheppard Pratt Health System, a nonprofit behavioral health organization in Baltimore.
"The goals of deinstitutionalization were perverted. People who did need institutional care got thrown out, and there weren't the programs in place to keep them supported," said former U.S. Rep. Patrick Kennedy, the president's nephew. "We don't have an alternate policy to address the needs of the severely mentally ill."
He is gathering advocates in Boston this week for the Kennedy Forum, a meeting to mark the 50th anniversary of his uncle's legislation and an attempt to come up with an agenda for improving mental health care.
The 1963 legislation came amid other changes in treatments for the mentally ill and health care policy in general, Appelbaum said. Chlorpromazine or Thorazine, the first effective antipsychotic medicine, was released in the 1950s. That allowed many people who were mentally ill to leave institutions and live at home.
In 1964, with the adoption of Medicaid, deinstitutionalization accelerated, experts said, because states now had an incentive to move patients out of state hospitals, where they shouldered the entire cost of their care, and into communities where the federal government would pick up part of the tab.
Later, a movement grew to guarantee rights to people with mental illness. Laws were changed in every state to limit involuntary hospitalization so people can't be committed without their consent, unless there is a danger of hurting themselves or others.
Kennedy's legislation provided for $329 million to build mental health centers that were supposed to provide services to people who had formerly been in institutions, as well as to reach into communities to try to prevent the occurrence of new mental disorders. Had the act been fully implemented, there would have been a single place in every community for people to go for mental health services.
But one problem with the legislation was that it didn't provide money to operate the centers long-term.
"Having gotten them off the ground, the federal government left it to states and localities to support," Appelbaum said. "That support by and large never came through."
Later, during the Reagan administration, the remaining funding for the act was converted into a mental health block grant for states, allowing them to spend it however they chose. Appelbaum called it a death knell because it left the community health centers that did exist on their own for funding.
Robert Drake, a professor of psychiatry and community and family medicine at Dartmouth College, said some states have tried to provide good community mental health care.
"But it's been very hard for them to sustain that because when state budget crunches come, it's always easiest to defund mental health programs because the state legislature gets relatively little pushback," he said. "Services are at a very low level right now. It's really kind of a disaster situation in most states."
Sharfstein points out that most mentally ill people are at a very low risk of becoming violent. He said it's unthinkable we would go back to the era when people were housed in "nightmare" conditions at overcrowded, understaffed and sometimes dangerous state hospitals.
"The opportunity to recover is much greater now than it was in 1963," he said.
But for those who do not take their medication, don't recover from their first episode of illness and don't seek treatment and support from professionals, they are vulnerable to homelessness, incarceration and death, he said.
Linda Rosenberg, president and CEO of the National Council for Behavioral Health, counts among its 2,100 member organizations many of the original community mental health centers that were built under the 1963 legislation.
"Whenever you pass a piece of legislation, people would like to think that you've solved the problem," she said. "It did some very important things. It laid some ground work. It's up to us now to move forward."