This year has brought a reckoning with the ways our health and legal systems fail those with mental illnesses and their families.
The tragic deaths of Truro’s Susan Howe and her son Adam this fall shed light on those failings. It is important first to note that people with mental illnesses are no more violent than those who do not suffer from such conditions and are in fact more likely to be victimized. But recent research has identified factors that increase the risk of violence, including substance use and noncompliance with treatment. Symptoms like delusions and paranoia are also associated with increased risk.
Adam Howe had a serious mental illness, which is distinctly different from most mental health conditions. Diagnosable psychiatric illnesses like schizophrenia and bipolar disorder are signaled by functional impairment — such as inability to hold a job, secure housing, or care for oneself — for two years or more.
Because there are so few public mental health services available, nearly 90 percent of mental health caregivers are relatives. About half are aging parents caring for adult children with serious illnesses. Most often the caregivers are mothers over age 55.
That caregiving is much more difficult when the adult child is not in treatment. According to the Kaiser Family Foundation, in Massachusetts only 30 percent of the adults with serious mental illnesses are receiving treatment. Health professionals estimate that on Cape Cod there are more than 2,700 such adults who should be in treatment but aren’t. Many of them are cared for by aging parents.
Family caregivers have an increased risk of being harmed. When someone becomes dangerous because of delusional thinking, half the time a family member is the victim. Adam Howe exhibited several factors known to increase the risk of violence: substance abuse, nonadherence to medication, refusing mental health treatment, and a history of violent behavior.
Susan was her son’s caregiver, but there was nothing she could do when he refused mental health treatment. Her only option when things got bad was to call the police and hope they would take him to an emergency room for a psychiatric evaluation and that from there he would be admitted to a hospital.
Even then, though, the average stay in an acute psychiatric hospital is less than a week — not long enough to conduct a proper diagnosis, prescribe effective medications, or observe the symptoms and effects of medication. It is virtually impossible to be admitted to a public continuing-care psychiatric hospital that provides more than acute care.
In 1963, President Kennedy signed the Community Mental Health Act, which promised federal funding for a network of centers in conjunction with the closure of the large state psychiatric institutions. More than 90 percent of the state hospitals were closed, but the promise of community mental health care was never fulfilled. There were 1,170 continuing-care beds in the Commonwealth in 2000; now there are only 663.
The Dept. of Mental Health provides funding for Programs in Assertive Community Treatment (PACT), a multidisciplinary team approach providing acute and long-term support and community-based psychiatric treatment. PACT works to engage clients who initially refuse help. But there are enough PACT services for less than one percent of the 260,000 people with serious mental illness in Massachusetts.
Clearly, more services like PACT are needed. But even with PACT, a small number of people refuse treatment and therefore may require involuntary commitment.
In 47 states, a person can be involuntarily committed to treatment in the community rather than a hospital through a program called Assisted Outpatient Treatment (AOT). Massachusetts is one of just three states that does not have an AOT law.
AOT is prescribed for a small number of people who meet strict criteria and need to have a judge or other authority tell them they have to accept help from mental health providers. That idea remains controversial in Massachusetts, even though it has been proved effective. It could have saved Susan and Adam Howe’s lives. That should lead us to at least consider enacting an AOT law in Massachusetts.
Mary Zdanowicz was the founding executive director of the Treatment Advocacy Center, a national mental health advocacy organization in Arlington, Va. In 2013, she established a law office in Eastham advising family caregivers for adults with serious mental illness. She is now retired.