Congress has a chance to overhaul the provision of care, making treatment more available to those who desperately need it.
(originally appeared in The Atlantic, June 8, 2016)
Every day, when I am walking to work, or just walking through the streets of downtown Washington, I encounter homeless people on the street. The homeless cover many categories, but prominent among them are those with serious mental illnesses. They know no boundaries of race or education; there was a prominent story last year in the Washington Post of a homeless man with schizophrenia who told a judge that he didn’t need a lawyer, that he was a lawyer. When the judge reacted with bemused skepticism, the man informed the judge—accurately—that they had been in the same class at Harvard Law School (which also included Chief Justice Roberts!)
I used to pass most of the people on the streets by studiously looking the other way, sometimes reacting with annoyance if someone was talking to himself or shouting. But after a difficult, 10-year journey of serious mental illness with my brilliant and talented son, which ended in tragedy, I have a different attitude. My son had, as an integral part of his illness, a phenomenon called anosygnosia, the inability to recognize you are ill. And given the laws and approaches in the country, since he was over 18 when he became ill, my wife and I were powerless to do anything to help. He did not end up homeless, or tased or shot by police, or abused or killed in jail or prison, which is the fate of many with serious mental illness. But he died at 34 from an accident shaped by his lack of judgment from his illness. I encountered in the worst possible way the tragic nature of these terrible brain diseases and the tragic failure of our policies to find ways to help reduce the pain and the costs, in money and heartache, that come with them.
Cultural dynamics and public-policy choices made my son’s problems, and those of others like him, much worse; our focus has been far more on less serious illnesses like anxiety and depression than on the most serious mental illnesses, and our deep and understandable concern about civil liberties has gone too far when it comes to those who either don’t recognize they are ill or have deep psychoses. For them, freedom of choice can mean homelessness, jail, or worse. Our commendable sensitivity to privacy also means that parents and other loved ones can be shut out of any role and knowledge of what their children, grandchildren, or siblings are encountering within the system.
In a larger sense, the roots of the current problems go back more than 50 years. One of the signature achievements of the John F. Kennedy administration was the Community Mental Health Act of 1963. Spurred by a broad and visceral reaction to the horrific conditions of those with serious mental illnesses warehoused in state mental hospitals, the president and Congress embraced a major reform: Release the patients and get them into community health centers, where they could get humane treatment and in most cases be able to live in their communities, with their families or on their own. The idea was to create a win-win—help people and save money by creating more efficient and cost-effective facilities.
The impulse was commendable, the policy was balanced and reasonable—and the act was a spectacular failure. Why? The law was built around a two-step process—release and catch, as it were. De-institutionalize the mentally ill in these deplorable institutions, and then get them into the system of community health centers. But there was no step two. More than half of the proposed community health centers were never built. Many states were delighted to close the cash-draining state mental hospitals, and pocket the savings without replacing them with community health centers. Those that were in operation were never fully funded. Inadequate treatment capacity and an over-emphasis on those less severely ill remain the case today. Indeed it has gotten worse in some respects. As the Associated Press’ Michelle Smith pointed out in 2013, on the 50th anniversary of the Act, 90 percent of beds in state hospitals have been eliminated, leaving only the streets, jails, or prisons for those with serious mental illness. Twenty percent of the beds have been eliminated in just the last five years.
The lack of beds can have tragic consequences. Despite having legal and medical clearance, Virginia State Senator Creigh Deeds was unable to get his profoundly ill son a bed when he became seriously psychotic; his son Gus subsequently stabbed his father, nearly killing him, and then turned a gun, fatally, on himself.
To be sure, if only half the community mental health (call them behavioral health) centers were built, that still means a sizable number of facilities are out there in operation—and there are others provided and run by private, charitable groups. But they face another problem—getting adequate reimbursement from insurance companies—including from Medicaid and Medicare. Thanks to the yeoman efforts of the late Senator Paul Wellstone, along with Pete Domenici, the law provides for parity in insurance coverage for mental-health and physical-health services, a provision that was underscored in the Affordable Care Act. But as lots of people who have tried to get reimbursement from their providers for psychiatric care could attest, parity in theory and in practice are two different things. And even where providers cover the services, the reimbursement rates are often well below what is provided for physical health issues.
If these centers are available and in operation, with adequate staff, they can be the first stop for someone in a mental-health crisis. If not, the first stop is jail, with often-horrific consequences. Of course, we need more than an effective first stop; we also need sustained treatment with a range of services to help those who cannot cope themselves.
For the first time in a long time, there is an awareness of the problems in public-policy and political circles, in counties, states, and even in Washington. In Florida, inspired by the dramatic success of a brilliant Miami-Dade judge named Steve Leifman, who has transformed the way the criminal-justice system deals with those with mental illness, the state legislature has kicked in money and helped reform the laws. In Hennepin County, Minnesota, money is being added to community behavioral-health facilities to provide an alternative to jailing people in crisis. Nationally, Leifman has inspired the National Association of Counties, in conjunction with the Council of State Governments and the American Psychiatric Foundation, to build a network of best practices across counties, called the Stepping Up Initiative.
There are so many problems that need to be addressed. Some involve a commitment of resources—the number of beds and appropriate facilities to handle cases of serious mental illness is shockingly low, and some flaws in the law do not allow Medicare or Medicaid reimbursement even if beds are in existence and available. One inevitable result is that the jails and prisons become the places where America houses those with serious mental illness; where the personnel are untrained, and often sadistically hostile; and where jail and prison officials know this, have no real interest in effectively becoming psychiatric facilities, but are still placed in that awful position of needing to try.
Sometimes, the mentally ill people who end up in jail are lucky—for others, the encounters with police can end very badly. Crisis intervention training for police, as well as for jail and prison guards and even teachers in schools, has been shown to make a dramatic difference in outcomes. And mental-health courts, as well as veterans’ courts to help those with serious trauma who should be treated instead of imprisoned, save lives and in the end save a lot of money.
There is also a need to shift significantly the resources and change the structures that deal with mental illness and substance abuse. SAMHSA, the Substance Abuse and Mental Health Services Administration, focuses the lion’s share of its resources on wellness and less serious mental-health issues—important to be sure, but to the detriment of the most serious problems, which also become the most draining for those who are ill, for their families, and for society as a whole.
And, for people with the most serious diseases, who cannot recognize they are ill or who have deep psychoses that leave them detached from much of reality, we need to recalibrate the balance between civil liberties and the need to provide real treatment—the kind of wraparound, assisted outpatient treatment (AOT) that Leifman has pioneered in Florida—while making it easier, with appropriate safeguards, for family members to intervene to help their loved ones.
In Washington, the good news is that reforming the system to deal with mental illness is one of the few areas where there is serious bipartisan cooperation and action—including, in the Senate, Democrats like Debbie Stabenow, Chris Murphy, and Al Franken, and Republicans like Roy Blunt, Bill Cassidy, and John Cornyn. In the House, there’s a major bill cosponsored by Republican Tim Murphy, the body’s only psychologist, and Democrat Eddie Bernice Johnson, a former psychiatric nurse.
Of course, there is bad news—this is American politics in 2016. The highly dysfunctional Congress is stymied from action so far even in areas that have broad and deep bipartisan support, like Puerto Rico’s debt crisis, the opioid crisis, and criminal-justice reform
The biggest question surrounds the broad bills crafted by Murphy and Cassidy in the Senate and Murphy and Johnson in the House. A revised version of the Senate bill passed the Health, Education, Labor, and Pensions Committee unanimously, thanks to the leadership of Lamar Alexander and Patty Murray, and is awaiting action by the chamber. A revised version of the House bill, being crafted by Energy and Commerce Chair Fred Upton, is being voted on later this week by the full committee.
The initial versions of both bills were excellent, because they focused on a panoply of problems facing those with mental illness, and especially those with serious mental illness. The Senate bill, however, significantly diluted the original package. The revised Upton bill is much stronger, retaining a plan for a new Assistant Secretary of Health and Human Services for Mental Health and Substance Abuse Disorders who can move the resources and focus more to where they are needed, improving Medicaid coverage, expanding resources for AOT, increasing access to care, and making it easier under HIPAA for families to get information about those with serious illnesses. One hopes that in the end, the House version will prevail, making a giant step forward. At the same time, a Senate-passed bill authored by Franken and Cornyn to authorize significant expansion of CIT training as well as those mental-health and veterans courts, is awaiting action in the House—but will need an appropriation to fund the expansion.
What about those promised community mental health centers? A modest attempt to deal with this problem was enacted in 2014. Called the Protected Access to Medicare Act, or PAMA, it included an eight-state demonstration project over two years, enabling community behavioral health clinics that met a range of criteria, including 24-hour crisis psychiatric care, screening, and assessment capability for both mental health and substance abuse patients, and peer counselors, to be certified and guaranteed payment comparable to other medical services.
This was a baby step; Michigan Democratic Senator Debbie Stabenow and Missouri Republican Roy Blunt have a proposal to make it more robust; they found a pay-for to triple the commitment and allow half the states in the union to move forward with planning grants and action programs.
So there are bills ready to go—in a Congress that is distracted by the tumultuous presidential campaign, filled with members nervous about their own situations, and with a tiny number of days left before both houses leave Dodge to tend to the home fires. The best hope for the Stabenow-Blunt bill is to incorporate it into the opioid-crisis bill now in a conference committee, which itself is a half-step forward to deal with a huge problem in the country, constrained as every other major problem and crisis is by the unrealistic requirement to take any funds for the urgent problems out of already pinched existing programs. The opioid crisis and the mental-health crisis are in fact inextricably linked; the majority of those with serious mental illness have dual diagnoses, including drug issues, which is often the aspect of their situations that sends them to jail or prison.
Enacting the larger bill, the Murphy-Johnson and Murphy-Cassidy contribution, fundamentally requires a strong commitment and push from congressional leaders. Speaker Ryan and Majority Leader McConnell have commendably made those commitments, but the big hurdles—getting a strong bill through both the House Energy and Commerce Committee and then passed by the full House, and an expeditious move through a conference committee before time runs out—remain.
I do not want to see other families go through the turmoil and heartache my family faced—and even more important, I do not want to see other people like my son Matthew, hit through no fault of their own with an illness that devastates their lives and brings unimaginable stigma and pain, suffer unnecessarily. I have not even mentioned the need for a major ramp-up in resources for research on the brain. We know so little, and the available treatments are often inadequate. But for many, access to treatment and a push to get treatment—not just drugs, but therapy, social assistance, housing, and peer counseling—can make a dramatic difference. And moving people from jails or the streets to productive and consequential lives can save money at the same time. This is what policy-makers are supposed to do.