My younger brother Paul suffered from severe and treatment-resistant schizophrenia. He developed the illness at age 16, in 1976, and never really recovered. He was frequently delusional and paranoid, and sometimes threatened violence. But our mother never gave up on him, always believing that one day soon, a cure would be found. It was our job to keep him safe until then.
At the onset of Paul’s illness, psychologists still tossed around terms that blamed the mother in some way for the condition. The terms “smothering mothering” and the “schizophrenic mother” were bandied about in pseudo-scientific literature. At other times mental illness was often blamed on repressed homosexuality or an Oedipal complex – Freudian beliefs still popular in some circles. And in many people’s heads, it was linked to the sufferer’s own sinful ways or to some God-assigned stigma. Mother knew this was nonsense – or tried to believe it was nonsense, and carried on, determined to do her best for her son.
Paul’s care was often hampered by lack of funding and accessibility to good care. Because of the many false beliefs in the general population, insurance companies were permitted to set lower lifetime limits for expenditures on medical care for mental illness and higher co-pays – often 50%. This is how my parents reached the point that they could no longer afford to care for Paul themselves. After about 18 months, after mortgaging the house to the hilt to pay hospital and doctor bills, they were forced to sign him over to be a ward of the state, and he was committed to a state psychiatric hospital. But no sooner was Paul admitted, than hospitals began to close. Little by little, the less severely ill were released.
The nineteen seventies and eighties saw a public zeal to release all mental patients from mental hospitals. I had been living in Minnesota when Paul became ill, but in 1981, I moved back to New York State to be closer to my family after a divorce, and I began to become involved in his care. I found that New York had already begun to empty and close all the state mental hospitals. This wasn’t unique to New York; it was a national trend. Beginning as a trickle, the great emptying had become a torrent by the mid-1980s. The United States had 340 public psychiatric beds available per 100,000 people in 1955; by 2005 there were only 17 beds per 100,000. And hospitals still continue to close every year, across the country. Much of this shrinkage in capacity at psychiatric hospitals during these years was a result, direct or indirect, of the introduction in 1954 of chlorpromazine (Thorazine), the first effective antipsychotic, which made it possible, for the first time, to control the symptoms of schizophrenia and thus discharge some patients. Paul was on Thorazine and similar medications for many years.
By the mid-1980s, the doctors treating Paul were well aware that a neurological component was primary to the disease; it was not a behavioral issue. Doctors were also well aware that not everyone benefitted from the new medications; some still needed long term, supportive care. But despite the rapidly growing body of knowledge that pointed clearly to biological, neurological causes, old stereotypes persisted, and they took form in efforts to release all patients from mental hospitals.
During this time, well-intentioned do-gooders, as my father called them, had sued New York State to close down the huge state institutions, made infamous by investigative reporting on places like Willowbrook, on Long Island, where developmentally disabled people had been mistreated. This movement was intensified by an aspect of Medicaid: its reimbursement schedules were written to withhold payments to large mental institutions, accelerating the closures nationwide. New laws called for smaller, more humane, community-based residential facilities for patients needing long term care. One by one the old hospitals closed; a few homes were built for people with Downs Syndrome and the like, but no one wanted crazy people in their neighborhood. Almost no smaller facilities were built for people like Paul.
The shrinking population of those suffering from the most serious mental illnesses rattled around on a few floors of hulking, ancient hospitals, many of them built a hundred years before as sanitariums for people with TB. Paul’s hospital was one of them, with bars on the windows and double sets of locked doors. We felt bad for him, but we knew he would be unable to care for himself on his own. The former patients who were released often ended up in slumlord- operated single room occupancy buildings (SRO’s) and adult homes, where they were still confused and unable to care for themselves and now had no supervision. The streets of New York and other big cities suddenly were full of mentally ill homeless people wandering around, sleeping in doorways, dying of exposure or getting arrested. Eventually, our prisons filled with mentally ill people who, only twenty-five or thirty years before, would have been humanely cared for in an institution—people who by law should have been cared for in new, smaller, community care facilities.
Every time there was a story in the papers or on TV about one of them, Mother cringed. A mentally ill man pushes someone off a subway platform. A mentally ill homeless person wanders the streets of New York City pestering passers-by, is killed in a bar fight, is found frozen on the streets…
Mother would steel her mouth into a thin line. This will not happen to my son. I couldn’t stop him from going mad, but I can try to make his life as good as possible, within its limits. She volunteered at the hospital library. She stopped by the ward on non-visiting days. My son is not alone, her presence said. I am watching. She joined NAMI, the National Alliance on Mental Illness, a new organization which advocated for both patients and their families. Her focus at that time was always on making the remaining hospitals comfortable for Paul. We couldn’t imagine that he would ever be released.
Determined to keep her son safe, Mother stayed tuned in to public hearings and release meetings – sort of like parole hearings – at the hospital. She showed up for all of them, ready to insist that Paul stay hospitalized. “You can’t just release him. Transfer him to a nicer, smaller place, yes. But I can’t handle him. He’ll set fire to the house. He’ll get into bar fights. He’ll hurt someone,” she told anyone who would listen. She wrote letters to our Congressman and State Assemblyman.
Sunday after Sunday, Mother made the one-hour, forty-five mile, drive up Routes 684 and 22, from White Plains to Harlem Valley Psychiatric Center so often, she could recite every gas station, restaurant, fitness center, farm, antique shop, motel, bank, diner, lumber supply store, army surplus store, church, fast food joint, office park, bakery, school, ice cream stand, car dealership, nursery, and garden supply store along the two-lane state road. My house was about halfway between Paul’s hospital and Mother’s home in White Plains. She would visit Paul in the early afternoon, then stop off at my house for dinner. Her Sunday visits to Paul and me became a ritual.
Mother also made sure we included Paul at all our family gatherings, often making the long drive to pick Paul up for Christmas and Thanksgiving dinner herself, and ferrying him to my house or my sister’s house for the afternoon. For his birthday she made cupcakes for the ward. He’s your brother, she would say to us. We can’t abandon him. He needs us.
Our mother died in 1993—too young, at only 71, leaving advocacy for Paul in the hands of his siblings. I have often thought that if she had taken half as good care of herself as she tried to do for her son, doctors might have dealt with her cardiac condition before her sudden death. I’m ashamed to say we were not as diligent about Paul’s care as she had been; within a year after she died, Paul was released—delusional, confused, and unable to care for himself. We siblings tried to advocate for him with social services agencies, etc., but what he needed was supervised care. It didn’t need to be at the hulking psychiatric hospital, perhaps, but there were no smaller, community-based long term care facilities for him. And so began his downward spiral—group home to ER to group home. We siblings did what we could for him, tried to make sure he got medical care, and stood by him when he developed cancer. Unfortunately, he died at age 48, in 2008. Eleven years later, we still advocate for better care and speak out in his memory.
And on Mother’s Day, I remember my mother and thank her for not only her unstinting efforts to care for her son, but also for teaching her children our responsibility to care for those who need help.
When Medicaid was passed into law in 1965, it took on from the states about 50% of the burden of caring for indigent people like Paul, who until this time had been housed in institutions funded completely by the states. But a little known part of Medicaid was something known as the “IMD exclusion.” Medicaid will make no payments to any institution for mental disease, or “IMD.” An IMD is defined as any facility of more than 16 beds where more than 51% of its patients between the ages of 21 and 65 are being cared for by reason of severe mental illness. Nursing homes caring for elderly Alzheimer’s patients are not impacted, nor are institutions caring for young patients suffering from mental retardation or illnesses.
While the IMD exclusion may have been meant to ensure that mental patients were not warehoused in huge institutions, in practice it made it impossible economically for state facilities to care for the people most severely afflicted with diseases of the brain. Not only is a facility precluded from being reimbursed by Medicaid for the individual’s day-to-day care, but individual patients’ eligibility for Medicaid is canceled while they are inpatients in an IMD. Consequently, to receive treatment for medical disorders not related to their severe mental illness, they must be discharged from the IMD, have their Medicaid eligibility reinstated, be treated in a medical/surgical setting, and then be readmitted to the “IMD” Not do-able.
The number of people still needing hospitalization did not shrink as much as the hospitals did. Many people, like my brother, were not helped significantly by the new medications. They remained delusional and unable to take care of themselves, and often too prone to violence to permit their care at home. Experts in 2016 estimated the U. S. still needs about 50 beds per 100,000 people to care for those suffering from the most severe forms of mental illness. With a population of 310 million, that means the United States needs 155,000 psychiatric beds but had only 53,000. Those seriously ill people have no residential setting to care for them. Many of them have ended up in prison.
In 2014, as part of the implementation of the Affordable Care Act (ACA, or Obamacare), demonstration projects in 15 states temporarily lifted some of the IMD restrictions. Under new leadership at SAMHSA, the Substance Abuse and Mental Health Services Administration, more temporary stays are underway. Hopefully, the relaxation will help demonstrate that our current system of non-care, pretending that people like my brother Paul don’t exist, makes no sense. What needs to happen is a complete elimination of this arbitrary exclusion.
Who knows? Perhaps one day soon, a cure will be found. It is our job to try to care for our loved ones until then.
Further information regarding the status of Federal legislation and treatment standards for serious psychiatric illnesses may be found at SAMHSA and The Center for disease control CDC
More information can be found at Mental Illness Policy Org. MIPO
To join the effort to advocate for better care for our mentally ill loved ones, visit the National Shattering the Silence Coalition website NSSC
Note: This essay draws from The Great Emptying, a chapter of my memoir about taking care of my brother, titled Shot in the Head, a Sister’s Memoir, a Brother’s Struggle.