There is no question that America's mental health care system is in dire need of an overhaul. But the "Helping Families in Mental Health Crisis Act" (H.R. 2646), introduced by Congressman Tim Murphy (R-PA), represents the worst, most regressive possible direction for reform. Its passing would mean the erosion of key civil and health privacy rights for people living with psychiatric disabilities, and an increase in punitive, institutional approaches to care. The bill does little to encourage the implementation of the evidence-based supports that allow many people to live successfully in the community -- including supported housing, case management, rehabilitation services, job training and placement, and peer supports.
H.R. 2646 passed out of the Energy and Commerce Health Subcommittee earlier this month after a marathon ten-hour markup process. It appears, however, that the full committee markup of the bill will be delayed until 2016, due to Republican concerns with its price tag and some of its more controversial provisions.
While this delay is a positive development for the bill's opponents, advocates must continue to ensure that reform is based on compassion and solid science, not ignorance and fear. The fight must occur in both houses of Congress, given that a companion bill has been introduced in the Senate by Senator Chris Murphy (D-CT) and Senator Bill Cassidy (R-LA), which lifts many of H.R. 2646's provisions verbatim.
Rationale for H.R. 2646
To understand why this legislation is so horrible, despite its helpful sounding title, it's important to understand its history. A previous, not-so-different version of H.R. 2646 was introduced in 2013 as a direct response to the unspeakable mass shooting that occurred at Sandy Hook Elementary in Newtown, Connecticut in December 2012. Following every mass shooting that has occurred since, Representative Murphy has taken to the media and promises Americans that if his bill passes, these kinds of senseless massacres will end.
We all want to see an end to mass shootings. But H.R. 2646 is predicated on a big lie: that mental illness is the primary cause of these crimes. In February of this year, Jonathan Metzl, a professor of psychiatry at Vanderbilt University, conducted a comprehensive review of the research on mass shootings and mental illness in a paper published in the American Journal of Public Health. Dr. Metzl highlights a series of studies indicating that people with mental illness are more likely to be victims -- not perpetrators -- of violence. He notes that "persons with mental illness are far more likely to be shot by someone else than to be the shooters."
Research indicates that people with psychiatric diagnoses are responsible for only 3-5 percent of gun violence. While H.R. 2646 focuses exclusively on mental illness, much stronger predictors of gun violence include: access to guns, substance use, poverty, and a history of violence.
Congressman Murphy's approach is not surprising: as a conservative Republican, he has received an A rating from the National Rifle Association (NRA) for his voting record on gun control. The NRA was even registered to lobby for the 2013 version of the bill. H.R. 2646 serves to keep the public and policymakers distracted from understanding and addressing the root causes of gun violence. By scapegoating people with mental health conditions, it increases the serious stigma and discrimination already faced by this population.
Because H.R. 2646 is inspired and driven by fear, it adopts punitive, authoritarian, public safety approaches to mental health reform, rather than sound public health approaches employing the latest findings in science and medicine. Below is just a sampling of the serious problems with H.R. 2646.
Promotes unproven, coercive approaches to care.
One of the most controversial provisions in H.R. 2646 would provide an increase in federal funding to states implementing so-called "Assisted Outpatient Treatment (AOT)" programs. Despite what the bill's supporters say, AOT is not a "community-based alternative" to incarceration and institutionalization. AOT is a euphemistic term used to describe involuntary outpatient commitment ordered by a judge, with the threat of involuntary inpatient hospitalization for those who do not comply with their treatment orders. H.R. 2646 dramatically lowers the current standard for involuntary treatment --danger to self or others-- to include people with a history of hospitalization or a history of not complying with treatment.
As noted in a 2005 report by New York Lawyers for the Public Interest (NYLPI), "the orders can control very fundamental aspects of life in which we traditionally expect to have freedom - not only how and where one is treated, but also by whom and with whom one must discuss deeply personal matters - and including where and with whom one lives." This erosion of rights can be a slippery slope, and for this reason the American Civil Liberties Union (ACLU) opposes the bill.
The two most significant, randomized controlled trials conducted on AOT, in New York and North Carolina, both reached the same conclusion: there is no evidence that mandating outpatient treatment is more effective than providing such treatment on a voluntary basis. Any positive outcomes from AOT appear to result not from the court order, but from accompanying investments in comprehensive community-based services.
Most of us, however, live in the opposite environment, where many local and state mental health budgets have not returned to prerecession levels, much less increased. As Congressman Joe Kennedy (D-MA) noted: "This bill makes it easier to involuntarily commit the mentally ill into a system unequipped to provide them with the treatment that they need."
Proponents of forced treatment point to "lack of insight" among people with serious mental illness diagnoses as a rationale for mandating care. But this approach undermines trust between patients, their families, and their care providers, harming the therapeutic alliance. There is a better way: reform can and should include funding for increased outreach to engage our most vulnerable populations into services that actually work for them. If people are found to lack capacity to make informed treatment decisions, there are other models, such as supported decision making and Open Dialogue, which do not impinge on civil liberties.
Incentivizes institutionalization at the expense of community-based services.
In addition to providing incentives for AOT, the bill tinkers with a Medicaid funding restriction known as the Institutions for Mental Diseases (IMD) exclusion, which prohibits the use of Medicaid financing for adult psychiatric hospitalizations and residential facilities larger than 16 beds. This restriction was put in place for a reason: to compel states to invest in their community-based systems instead of unnecessarily warehousing people in segregated institutional settings that are breeding grounds for abuse, neglect, and death.
"Funding" is a dirty word in mental health policy. But we need to increase the capacity of community services to prevent crises. And that takes money, or at the very least, not incentivizing institutions over community. Where authorities have put accessible, comprehensive community-based supports into place, like Bexar County in Texas and the state of Delaware, they have seen significant drops in the need for both incarceration and long-term inpatient hospitalization.
Perpetuates institutional racism in the public mental health system.
Institutional racism in all of our systems, including the public mental health system, is pervasive. People of color with mental health and substance use problems are overrepresented in our jails, prisons, and institutions, and underrepresented in voluntary, community-based services. This bill promotes approaches such as AOT that have been applied in a racially biased manner, and will only deepen institutional racism.
According to a 2014 report by the Maryland Disability Law Center et al, "Studies on outpatient civil commitment conducted in North Carolina and New York revealed that people of color and those living in poverty are disproportionately impacted by involuntary community treatment orders." The 2005 NYLPI report found that the implementation of AOT in New York is "severely biased." Consider the following research findings:
- In New York, African Americans were subjected to court orders five times more frequently than whites, while Latinos were two and a half times more likely than whites to be under a court order.
- In North Carolina, two-thirds of individuals court-ordered to community treatment were African American, despite only representing 22% of the total state population.
- 88% of AOT orders in New York were found to include some forced medication component. This is especially concerning, due to the increased risk of long-term severe side effects that African Americans are likely to face from antipsychotic medication.
Civil commitment should be regarded as a treatment failure and a poor substitute for actually engaging and assisting underserved communities of color.
Restricts the activities of legal advocates representing persons with psychiatric disabilities.
The original version of the bill would have blocked the federally funded Protection and Advocacy for Persons with Mental Illness (PAIMI) program from addressing systemic abuse and neglect in institutions, and would have limited the program's scope to individual cases only. Due to enormous uproar from advocates and persons with disabilities, the newer version has removed these specific restrictions. But the current bill would still drastically scale back what legal advocates could do - including representing their clients' interests in fighting discrimination in employment, education, housing, health care, voting, and child custody cases. People with mental health and substance use conditions should have the same right to legal representation as everyone else.
Invades the health privacy rights of students and all adults.
H.R. 2646 would create lesser privacy protections for individuals with serious mental illness than for everyone else by weakening the Health Insurance Portability and Accountability Act (HIPAA) and Family Educational Rights and Privacy Act (FERPA). Supporters of the bill say that changes are needed because mental health providers fail to communicate with families about their loved ones' care. But current law already allows providers to disclose information to families in emergency circumstances. Existing privacy laws are not the barrier to information-sharing in these situations, and the proposed changes would not solve the problem that they claim to address. Instead, they would create fear and further disincentivize voluntary help-seeking. For example, advocates for survivors of domestic violence are very concerned that if HIPAA is weakened, survivors may avoid seeking needed mental health services for fear of sensitive information being shared with their abusers.
As psychologist Dr. John Grohol writes: "Imagine that this was a cancer bill being proposed instead, and it too had HIPAA privacy violations, letting any family member access to your cancer medical records without your consent. Wouldn't people get very angry and up-in-arms about such violations?"
Ignores the role of traumatic stress in mental health crises.
Despite its supposed focus on science and evidence-based practices, the bill does not reflect current scientific knowledge of the central role that traumatic experiences and toxic stress play in the majority of mental health crises. While H.R. 2646 does reauthorize the National Child Traumatic Stress Network (NCTSN), it fails to address the lasting impact of trauma on adults, and promotes punitive approaches that would further traumatize them.
The Adverse Childhood Experiences (ACE) Study, a collaboration between Kaiser Permanente and the Centers for Disease Control and Prevention (CDC) was conducted in 1997 with 17,000 individuals in California, and has since been replicated in 28 states. This study found a clear connection between childhood trauma and increased risk for a range of serious physical and mental health conditions in adulthood, as well as addiction and suicide. We also know that child abuse and bullying have a strong correlation with the development of symptoms of psychosis. If we are to break intergenerational cycles of suffering caused by adverse childhood experiences, we must help traumatized adults who comprise the vast majority of persons with serious mental illness diagnoses who are currently warehoused in our jails, prisons, and psychiatric hospitals.
In a future blog, I will outline some ideas for what policymakers can and should do to enact comprehensive reform of our mental health system from the ground up. We desperately need massive and far-reaching change, and we need it now. But Americans deserve better than what is currently on offer in Washington.