Letters to a Future President: Early Warnings of the Failures of Deinstitutionalization

By Stephanie Ramage

The deinstitutionalization movement, which aspired to make mental institutions largely obsolete by releasing mentally ill patients into planned “community care” programs, began in the late 1950s, after the population of patients living in state mental institutions reached a national peak total of 559,000 in 1955.[1]

After 1955, the institutionalized population began to steadily decline largely due to the development of drugs, such as Risperidone, intended to ameliorate the symptoms of mental illness and allow sufferers to be cared for by relatives and through outpatient care programs. In 1963, in response to the burgeoning public awareness of abuses that had taken place in state-run mental institutions and with the tacit support of drug manufacturers, the Kennedy Administration unveiled the Mental Retardation Facilities and Community Mental Health Act. The Act’s purpose was to promulgate the construction of “2,000 community mental health centers by the year 1980, and thereafter build one per 100,000 population and keep it at that rate,” according to remarks made by Sen. Daniel P. Moynihan, chair of the Senate Finance Committee, in 1994. Moynihan, who had supported the Act and was present at its signing, went on to tell the Finance Committee, “But we built about 400 and then forgot that we had set out to do this….Then we stopped, but the deinstitutionalization continued, or is more likely the case, people did not go into institutions. Then a generation went by and, low and behold, we now have a problem called ‘the homeless,’ which in my state, at least, is defined as a problem which arises from the lack of affordable housing. It does nothing of the kind. It arises from a decision based on research to follow a particular strategy with respect to a particular illness, which I think we now know has a fairly steady incident in any large population anywhere. The species has this problem.”[2]

There was foreshadowing of the problems to which Moynihan referred as early as 1971, when Jerry Wiener, then the director of the Georgia Mental Health Institute’s Division of Youth, wrote to Gov. Jimmy Carter with concerns raised by the report of the governor’s Commission to Improve Services to Mentally and Emotionally Handicapped Georgians.[3]

The commission was intended to promote deinstitutionalization in Georgia. The concerns pointed out by Wiener remain relevant today and serve as reliable markers in researching deinstitutionalization’s problematic legacy and possible solutions:

  • What were the medical and scientific justifications for the deinstitutionalization movement?
  • How were censuses of institutionalized patients conducted and projections of the mentally ill population calculated?
  • What programs and funding were put in place to prepare for the impact that returning mentally ill individuals to their families and hometowns would have on relatives and communities?

Wiener asked the governor for answers and got the following response: “Your point about the difficulty in reaccepting patients from mental institutions into communities is well taken. Without decent community aftercare, prevention, and education programs, however, these difficulties cannot be studied and corrected. I, too, hope that the state will never be so callous as to release citizens from institutions who will falter in their home communities and also adversely affect the lives of other citizens.”[4]

Questioning the Medical and Numerical Justification of Deinstitutionalization

Wiener, who was also the director of Child and Adolescent Psychiatry at Emory University, questioned the science behind the Carter commission’s anti-institutional stance. He began his letter by quoting from page 14 of the commission’s report: “No emotionally disturbed child need be institutionalized in Georgia.” He then wrote “I do not know of any scientific study, statistical data, responsible body of professional opinion, or relevant clinical experience which would support this statement.” Although he agreed that community-based programs were “sorely needed” in Georgia, he warned “their availability in no way eliminates the ongoing need for high-quality, professionally staffed, diagnostic and treatment-oriented residential facilities for a significant number of Georgia’s youth. Feelings of dissatisfaction over the inadequacy of previous or existing institutional programs should not and does not lead to the conclusion that such programs are not needed.”[5]

He also believed the numbers the commission had used in compiling its report were too conservative. The commission reported that 30,000 children in Georgia “experience serious emotional disturbance.” Wiener, in calculating the incidence against the state’s census believed there were “70,000 of Georgia’s children and youth who can be expected to have either severe mental or emotional illnesses or serious developmental disturbances. An additional 130,000 can be expected to have identifiable emotional or developmental difficulties which require intervention.” In planning community services, Wiener noted, the commission should take the larger numbers into account.[6]

Wiener, significantly, took issue with the commission’s assertion that the daily population of mental hospital patients was declining as the result of community-based mental health programs. “The national experience has been that the average daily patient population and average length of stay in psychiatric hospitals have decreased steadily since the introduction of effective drug treatment beginning in the late 1950s,” he wrote. “Only recently, however, have questions begun to be raised as to the effects on the families and children of this return to or retention in the community of many still significantly disturbed adults whose overt symptoms of mental illness may be ameliorated or diluted by drug management, but whose interpersonal and/or parenting capacities may be still significantly impaired. These questions do not as yet have good answers but must be taken seriously if we are to be serious about prevention of illness in children.”[7]

Transinstitutionalization

Deinstitutionalization continued apace but a large part of it was actually transinstitutionalization.

The Community Mental Health Centers created under Kennedy’s 1963 act “had, at best, a minor impact on reducing hospital populations after 1965,” wrote mental health historian Gerald N. Grob. “Far more important were federal entitlements. The passage of Medicare and Medicaid (Titles XVIII and XIX of the Social Security Act) in 1965 encouraged the construction of nursing-home beds, and the Medicaid program provided a payment source for patients transferred from state mental hospitals to nursing homes and to general hospitals. Although the states were responsible for paying the full cost of keeping patients in state hospitals, they now could transfer them and have the federal government assume from half to three-quarters of the cost.”[8]

One such transinstitutionalized individual was William Boyd Carver Jr., a 29 year-old with cerebral palsy, a disorder involving muscle control of the limbs, mouth or tongue but not always of intellectual ability. Beginning in 1972, Carver wrote a series of letters to Governor Carter and his wife, mental health activist Rosalyn, asking, first, to have his Medicaid “switched” to a nursing home in Georgia from one in Minnesota so he would be closer to his family—at least until a place could be found for him in a “youth home” in Minnesota—and then, after residing in three nursing homes in Georgia and becoming depressed and suicidal, finally asking to be put in a mental hospital so he could be around people his own age.[9]

“Please read this and take action as soon as possible,” Carver wrote on Jan. 23, 1974. “I would like to commit to one of Georgia’s mental hospitals for psychiatry help. I have tried three nursing homes to find the answer to my problem, but fell (sic), and there isn’t any real companionship or fulfillment of life for a twenty-nine year-old adult in any of them…Can you send me somewhere for help, even if it has to be Central State Hospital, for a while, so I can be around people of my own age.”[10]

 

 

 

 

[1] United States Senate. 1994. “Deinstitutionalization, Mental Illness and Medications.” Hearing before the Finance Committee. 103rd Congress. Second Session. May 10, 1994. Washington D.C.: GPO.

Letter from Jerry Wiener to Gov. Jimmy Carter, Dec. 7, 1971, Rosalyn Carter’s Gubernatorial Special Projects and Events File, folder marked “Mental Health—Georgia Mental Health Institute,” Box 133, Carter Center Archive (CCA)

Gerald N. Grob, “Public Policy and Mental Illnesses: Jimmy Carter’s Presidential Commission on Mental Health,” The Milbank Quarterly, Sept. 2005. 83(3): 425-456

[2] U.S. Senate Finance Committee, May 10, 1994. Chairman Moynihan. P. 2-3

[3] Wiener letter to Gov. Carter, Dec. 7, 1971, Rosalyn Carter’s Gubernatorial Special Projects and Events File, folder marked “Mental Health—Georgia Mental Health Institute,” Box 133, CCA

 

[4] Gov. Carter letter to Wiener, Dec. 28, 1971, Rosalyn Carter’s Gubernatorial Special Projects and Events File, folder marked “Mental Health—Georgia Mental Health Institute,” Box 133, CCA

 

[5] Wiener letter to Gov, Carter, Dec. 7, 1971, Rosalyn Carter’s Gubernatorial Special Projects and Events File, folder marked “Mental Health—Georgia Mental Health Institute,” Box 133, CCA

 

[6] Wiener letter to Gov. Carter, Dec. 7, 1971, Rosalyn Carter’s Gubernatorial Special Projects and Events File, folder marked “Mental Health—Georgia Mental Health Institute,” Box 133, CCA

 

[7] Wiener letter to Gov. Carter, Dec 7, 1971, Rosalyn Carter’s Gubernatorial Special Projects and Events File, folder marked “Mental Health—Georgia Mental Health Institute,” Box 133, CCA

 

[8] Grob, The Milbank Quarterly, Sept. 2005. 83(3): 425-456

 

[9] Letters from William Boyd Carver Jr. Jan. 2-23, 1974, Carter Family Papers, Rosalyn Carter’s Gubernatorial Special Projects and Events File, Folder marked “Mental Health Correspondence—Metro Atlanta [1], Box 131, CCA

[10]Letters from William Boyd Carver Jr. Jan. 2-23, 1974, Carter Family Papers, Rosalyn Carter’s Gubernatorial Special Projects and Events File, Folder marked “Mental Health Correspondence—Metro Atlanta [1], Box 131, CCA