Among the most infuriating barriers to mental healthcare reform is the indifference of policymakers. The mentally ill don’t form a significant constituency, in voting or in contributions. Thus, you know, nobody cares.
State Senator Cindy Friedman, a Massachusetts Democrat, has burst through this complacency. Working with some colleagues mentioned below, Senator Friedman has crafted an important new bill and shepherded it through the Senate. It is on its way to the state’s House of Representatives for enactment into law.
The ABC Act, as it is called, should be a model for every state in the nation. And it signals to reform advocates that they have a new champion. Kudos to Senator Friedman. And thanks to my fellow advocate Donna Erickson for the heads-up!
Will you step up as the standard-bearer for the mentally ill?
Full disclosure: I have struggled with this blog post for days: post it or throw it away? Revise it one more time so that it reads as Beltway-savvy, or put on my Mister Smith hat and hope it will ignite a 1939 Hollywood moment? Decide to not intrude into the life-choices of an honorable private woman who made it clear recently that she wants to remain private, or say the hell with it and make the intrusion anyway?
Hell with it. Here goes:
On August 23rd of last year, America lost one of the two or three greatest champions of mental healthcare reform since Dorothea Dix. The vast sub-nation of the afflicted, their families, and their ardent yet scattered and over-burdened advocates is seeking a replacement: someone who can help unify this nationwide archipelago of sufferers into a single movement with a coherent voice.
I believe that Ashley Biden, the new President’s daughter, is the person most graced by fate to advance our mission. And I will tell you why: in addition to her experience and expertise in mental health issues, Ms. Biden would embody an influential link to policymakers that the afflicted and their caretakers have yearned for roughly since the founding of the Bedlam Asylum in 1377.
I can already hear the screams of “nepotism!” from the President’s political foes. (At the same time, I’m mindful that some of the most stalwart friends of the mentally ill have been Republicans.)
As Elizabeth Warren used to say, I have a plan for that: make Ms. Biden an unpaid White House staff advisor specializing in the interests of the mentally ill.
(Ashley, is there anything else I can do to enhance your life before I sign off??)
Let me give a thumbnail sketch of the man whose death has created such a vacuum:
Dj Jaffe was 65 when cancer took him from us. Most Americans had never heard of him. Yet within the archipelago, he was a superhero. He’d walked away from a cushy career in advertising to take up the cause when his sister-in-law developed schizophrenia. He understood and worked with Congress, the courts, community health centers, and the county jail, having mastered the complexities of schizophrenia and its related chronic predators upon the human brain. In 2011 he founded the indispensable Mental Illness Policy Org., a colossus of links to data, information, helpful sources, and policymakers. He was a co-founder of the Treatment Advocacy Center along with his own personal hero, the pioneering E. Fuller Torrey. His nonprofit book, Insane Consequences: How the Mental Health Industry Fails the Mentally Ill, is the single most comprehensive manual on the subject in our time.
Dj Jaffe’s passing has left an unacceptable void of wisdom, energy, and passion at the center of our efforts to reclaim the grievously broken systems of mental healthcare in America. There are dozens of men and women who would do credit to my late friend’s legacy. And then there is Ashley Biden.
As I say, Ms. Biden has made it clear that she dislikes “the spotlight,” and bravo for that. Yet her role as an advisor to her father, or perhaps as director of a new foundation, need not entail being in the spotlight so much as seizing the spotlight. And turning it around upon a shadow-enshrouded system that to this day abuses insane people with barbaric neglect and cruelty reminiscent of the Middle Ages.
With scattered exceptions, the mental-illness archipelago historically has been starved of government access. And when any level of government intervenes, it usually leaves things worse than they were. (I write this as a believer in active government.)
Think of “deinstitutionalization,” the sixty-year-old policy disaster that set off the national homeless calamity that expands to this day. Think of county jails as our new, dysfunctional mental hospitals. Think of mind-destroying solitary confinement, a useless torture practice that too often serves as a convenient storage-box for possibly prodromal juveniles. Think of un-convicted juveniles, untreated afflicted kids among them, waiting behind bars, often for weeks and months, for their trials. Think of untrained or uncaring police killing psychotic victims on the streets.
The crises and atrocities cited above are known to most people with a passing interest in the squalid fate of “crazy people” in America. The wish-list below will seem arcane to lay readers; yet it is packed with urgent, unaddressed problems that stunt and shorten the lives of the chronically mental ill, spread a widening cone of misery through their families and communities, and diminish the financial—and moral—health of the nation.
I’m indebted for this list to Leslie Carpenter of Iowa City, who with her husband Scott forms a tireless advocacy duo in America. Here it is:
–End the outdated, discriminatory federal rule known as the IMD Exclusion. This will increase the number of acute-care and long-term beds.
–Increase reimbursement rates for mental health professionals, direct care staff and facilities. This will help with recruitment, retention and quality of staff caring for people with serious mental illness (SMI).
–Increase funds for continued research for schizophrenia and related brain disorders.
–Fund and expand Assisted Outpatient Treatment Programs, along with Civil and Criminal Mental Health Courts.
–Expand funding for Certified Community Behavioral Health Centers in every state in the country.
–Stop wasting money on unproductive anti-stigma campaigns and. Use those funds to pay for the treatment of the most seriously ill, and the stigma will go away.
–Stop funding just more housing. Allow HUD subsidized funding for residential care facilities, group homes and facilities all along the continuum of care for people living with SMI and substance use disorders. Funded housing, tied with assisted outpatient treatment (AOT) programs, will allow the housing of people who don’t know they are sick, and keep them in treatment via outpatient civil commitments for treatment.
–Stop shutting down Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) if someone has to be hospitalized for 30 days or more. Shutting down the ability to pay rent is a major cause of homelessness among the chronic mentally ill.
–Create loan forgiveness incentives for mental health professionals practicing in rural locations.
–Fund medical schools to increase enrollment for psychiatrists and other mental health professional programs including nurse practitioners, physician assistants and psychologists.
Every one of these proposals requires intense, coordinated governmental action. As of today, there is no governmental coordinator. Not even Dj Jaffe had such power. This thin and secretly failing hero drew upon his extraordinary passion, his vast self-education in this complex cluster of subjects, and his gift for eloquence in the media, in testimony, and in his book.
The dispossessed mentally ill people among us cry out for a figure to replace Jaffe, and perhaps even surpass his legacy. Given Ashley Biden’s training, intelligence, commitment to the cause of mental health, and principled access to the (recently besmirched) corridors of congressional power, I believe that she could be this figure—a catalyst for reclamation.
We live in a fragile national moment, a moment saturated with promise and with menace. On the hopeful side, I marvel at the brisk accomplishments of President Biden’s first weeks in office, and I hear an old trumpet sounding, and I can almost envision a second New Frontier. On the dark side linger the shock-images and aural bedlam of the Capitol insurrection and the miasma of the impeachment trial, with portents of worse to come. And I wonder whether collective psychosis—madness—is our new pandemic.
It will take every person of good will to steer our future toward the light. Mental illness is just one item in a crushing agenda; yet it looms over us all, a scourge of mostly unfathomed proportions. (How far have some of us drifted into collective psychosis? Is there momentum in this direction?) A voice of informed influence near the apex of our government would be a godsend. The archipelago needs you, Ashley Biden.
I almost wrote, “the mentally ill people of America lost a hero on Sunday,” but that would not have been nearly adequate to contain this giant’s significance to our country.
Dj Jaffe, who succumbed to leukemia and other cancers at age 65 after stoically battling them for fifteen years, was a human beacon of hope and guidance and enlightenment to those who suffered from chronic brain diseases (“chronic” meaning genetically inherited and incurable). And to their caretaking relatives, mostly mothers, in practice; to their often overmatched doctors and therapists; to uninformed policymakers and corrections officers.
Dj was among the three most influential advocates for the mentally ill in the brief history of that calling, along with the author and blogger Pete Earley and the pioneering statesman of advocacy, E. Fuller Torrey, author of many books and the founder of the Treatment Advocacy Center. The TAC website is the largest, most diverse compendium of m.i. information online.
Dj Jaffe was a skinny force of nature the likes of which the cautious mental healthcare world had never seen, and not everyone liked him. He walked away from an obscure career in advertising after the sister of his wife, Rose, was stricken with mental illness thirty years ago. Razor-sharp and pugnacious when he had to be, he transformed himself into an expert on the nosology, neuroscience, politics and policy issues surrounding the disease. Wearing his unrepentant bluejeans, ponytail, and oversize glasses (and a wrinkled suit when he had to), Dj mastered libraries of information, then cycloned through public hearings, press interviews, and panel discussions, rising to challenge the dignitaries who did not know what they were talking about—or didn’t care. He delighted in getting thrown out of hearings. Opponents were infuriated by his refusal to back down from a stance or a demand. Truth to tell, he was not always right.
He was right often enough. Boring in on our slipshod structure of criminal justice for the insane, he was instrumental in pushing the act known as Kendra’s Law, which allows courts to order treatment for certain mentally ill and perhaps dangerous patients even if they resist it. He worked with the Pennsylvania Republican congressman Tim Murphy to achieve the Helping Families in Mental Health Crisis Act. He demanded, and largely achieved, a long-delayed recognition that “chronic mental illness”—genetically inherited and incurable brain afflictions such as schizophrenia and bipolar disorder—differs on a quantum level from such lesser complaints as depression, alienation, alcoholism, and drug abuse.
In 2017 Pete Earley distilled the reasons why this distinction is essential:
“The problem, according to Jaffe, is that the focus, money and attention in our nation is focused on helping nearly everyone but those ten million [with chronic m.i.] and the result is at least 140,000 SMI Americans being homeless, 392,037 in jails and prisons, 755,360 on probation or parole and at least 95,000 who need hospitalization unable to find a bed.”
His politics were less doctrinaire than fluid, tuned to the needs of the dispossessed who consumed his passions. He founded the nonpartisan Mental Illness Policy Organization. As an adjunct fellow at the conservative Manhattan Institute, Dj spoke at a White House summit on mental illness in December 2019. His countless articles and appearances across the media spectrum testify that he was a zealot not for ideology, but for enlightenment and hope.
“Since 1998, when we first started making plans for what became the Treatment Advocacy Center, Dj has been the single most effective advocate I have worked with and a close personal friend. His dedication to improving the treatment of people with serious mental illness, based on his experience with his sister-in-law, has been extraordinary. The amount of time and energy he has invested in this mission, first at TAC and then at Mental Illness Policy Org, is legendary. Even as he knew he was dying, DJ said nothing and continued his advocacy efforts.”
On a personal note:
It took me a while to get comfortable with the idea of meeting Dj Jaffe. His reputation as a controversial know-it-all firebrand put me off. But when we did meet, the rapport was instant. We discovered that we could make one another laugh. (I nearly lost it in a hotel coffee house in New York when my friend got embroiled in an argument with the waiter. This was no ordinary waiter-customer spat: the waiter was yelling at Dj!) Over several breakfasts, dinners and drinks in New York, Washington, and in the Powers home in Vermont, and in many lively emails, we kept up a bantering style that could segue seamlessly into explorations of our passions and ideas.
His just-beneath-the-surface humor proved the key to Dj: The firebrand was a necessary tactic, not a character flaw. In fact, Dj Jaffe was an extraordinarily loving man, as his career shift after his sister-in-law’s illness demonstrates. He enjoyed a longstanding marriage to his wife Rose, a lovely, laughing woman whom he adored. When Rose died two years ago, his friends expected that Dj would be devastated with grief. He may have been, but he was back to his advocacy work in a day or two. He never mentioned his feelings.
He met a woman named Paula about a year and a half ago, via a dating app. She was the one who reached out to him, friends say. Dj probably knew at the time that he was dying. Paula and Dj were married on Friday in his hospital room. Paula wore white pajamas and stomped on a Styrofoam cup. By all accounts, the marriage was a happy one. Because that’s the kind of guy Dj Jaffe was.