At the time, however, we were really all just trying to recover our senses. Several weeks after 9/11, a letter containing anthrax was delivered to Senator Tom Daschle’s office in Washington, setting off fear throughout every political office in the country. That same day, a secretary in my Pawtucket, Rhode Island, office discovered she had a rash and worried it might have been linked to a letter she had opened from India that was supportive of US policy but did mention Osama bin Laden. Although it turned out later not to be anthrax, nine members of my Rhode Island staff went to hospitals to be examined and tested.
—
SADLY, THIS UNPRECEDENTED CHALLENGE to the nation’s mental health did not result in any bipartisan support for better care. The original Mental Health Parity Act expired on the last day of the month 9/11 had taken place. The Congress didn’t start to seriously discuss how it would be replaced until early December. This was the first of the parity debates in which I was prominently involved.
The major issues hadn’t changed. Business lobbyists were still insisting they could never support a mental health parity law that could increase the cost of the nation’s healthcare by their magic “1 percent” threshold.
I personally felt this was a false issue. The way that experts calculated this theoretical 1 percent increase was open to massive interpretation, used by those groups that could most afford lobbyists to argue that ending discrimination against diseases of the brain was too expensive.
I also felt that if it raised the costs over 1 percent, that was a small price to pay for the exponential improvement in Americans’ quality of life and, for businesses, a dramatic decrease in the number of days lost to illness. It was a healthcare expenditure that would ultimately save lives and money.
The other issue was whether substance use disorder treatment would be included in parity. I believed in full parity for mental illness and addiction, and stood firmly on this point with my Senate friend Paul Wellstone. And, just as he had in 1996, Wellstone’s Senate cosponsor, Pete Domenici—as well as a lot of other senators interested in healthcare, including my father—refused to include substance use disorders in parity and wanted only the most “serious” mental illnesses fully covered. It was mental health parity déjà vu all over again.
Domenici’s position was supported—politically at least, because it seemed to have the best chance to win in a Republican-controlled government—by a powerful lobbying organization called the Coalition for Fairness in Mental Illness Coverage. It was a group whose members actually disagreed about a number of things and often lobbied against each other. Among the caregivers, the Coalition for Fairness spoke for the American Medical Association, the American Psychiatric Association, and the American Psychological Association; among the treatment facility and insurance community it spoke for the American Hospital Association, the Federation of American Hospitals, the National Association of Psychiatric Health Systems, and the American Managed Behavioral Healthcare Association; among the patient advocacy groups, it spoke for the National Alliance on Mental Illness and the National Mental Health Association—which is now called Mental Health America.
That was an awful lot of lobbying money and muscle to bring together to oppose full mental health parity. Especially since most of these people personally favored full parity. But they were all hedging their bets. They were so worried about what might not be politically possible that they were willing to side with an effort that could actually limit parity and increase stigma.
The Senate had attached a version of mental health parity, with no exemption based on its cost, to the bill that would fund the upcoming year of the Department of Health and Human Services. The House had not attached parity to its version of that funding bill, so we went into my first conference committee on mental health parity.
My colleague Nancy Johnson, Republican from Connecticut and chair of the House Ways and Means Committee, proposed capping parity at a 1 percent rise in expenditures—although she said her experience with companies that had voluntarily adopted parity was that it never cost anything near that. Paul Wellstone and Pete Domenici wanted a threshold over 1 percent—and I was pushing for a threshold of 2 percent. Most of my Republican House colleagues were against the entire idea because they considered it anti-business, and those who modestly favored it were afraid of the costs. Republican Speaker Dennis Hastert proposed a novel way to block the legislation, claiming it shouldn’t be attached to the funding bill at hand but instead needed the approval of three separate House committees—and, what a coincidence, the Republican chairs of each of these committees had written letters opposing it.
I worked as hard as I could in the House to get some parity traction. I failed.
Two weeks later, mental health parity died. It happened because my House colleagues on the conference committee voted along their exact strict party lines (a reminder of why I had spent the past two years fighting for a Democratic majority).
It was the beginning of my career as what the Providence Journal called “a legislative journeyman specializing in mental health issues . . . reconciled . . . to modest goals: a chunk of money for a local treatment program, an uncredited paragraph in someone else’s bill, and a standby role promoting the mental-health lobby’s long-shot priority of better health-insurance coverage. Plus, the less tangible attainment of giving voice to a needy constituency and gradually earning a name for that effort.”
The life of a true Washington insider. Slow and steady, and a tiny glimmer of hope of actually winning the race.
Chapter 16
My dad turned seventy in February of 2002. Besides the usual big parties, he sent me, Teddy, and Kara a letter explaining, in detail, his estate planning. While it was useful to know what he had arranged for us, more important was that it explained more about how he had done his best to do right by my mother, who was really struggling with her alcoholism and depression again.
The letter ended, “Each of you has given me great pride, joy and love. If good fortune should be ours, I will live many more years to share that love with you.”
—
I WAS DOING MY BEST to be a day-to-day Congressman and keep my mental health in check with a minimum of self-medicating beyond what I was prescribed. I also had new staff, and with an election coming—one thing about the House, every other year there’s an election coming—we were focusing on constituent services and local issues ahead of what was predicted to be a tighter race for my seat than I’d ever had before.
In late April, President Bush came out and said he favored mental health parity—although he was very sketchy on how he planned to solve the Republican roadblock of cost. He impaneled what he called the New Freedom Commission on Mental Health, which was part of the New Freedom Initiative he had announced just after taking office, with the goal of improving the lives of all Americans with disabilities. He announced this new effort at the University of New Mexico, where he was appearing with Pete Domenici, and focused on the themes of ending stigma and fixing the fragmented system of mental healthcare delivery and unfair disparities in mental health insurance coverage. So it was clear that the New Freedom Commission was likely to address parity in the more limited, Republican fashion—or, to be fair, in a fashion that had any chance of being passed by a Republican majority.
Still, it was great to see another president speak publicly about mental health. And several weeks later, to punctuate the point, we held a “Parity Now!” rally on the West Lawn of the Capitol, where Senators Wellstone and Domenici appeared with me and my Republican House colleague Marge Roukema. It was one of Marge’s last appearances on behalf of the issue she had spent so much time supporting, because she had decided not to run again for her seat.
In the fall, we were all involved in yet another round of parity law discussions likely to go nowhere. My local election was looking more promising after I had taken on a new chief of staff, Sean Richardson, a former member of Tom Daschle’
s leadership staff. But the big national news involved congressional hand-wringing over whether or not to authorize President Bush to go to war with Iraq.
My father broke ranks with the majority of Senate Democrats and voted against the authorization. I was perceived as breaking ranks with my father when I voted for it.
—
AND THEN, JUST A WEEK or two after that vote, after lunchtime on a Friday afternoon, came the horrible news: Paul Wellstone had been killed in a plane crash, along with his wife and daughter. They were on a short campaign ride from Minneapolis to Eveleth, Minnesota, and the twin-engine Beechcraft King Air A100 crashed in a swamp a quarter mile from the runway. The three of them had died on impact, along with all five others in the plane.
This was a stunning tragedy for so many reasons, but it was especially poignant to lose the most liberal member of the Senate at the age of fifty-eight at a time when every Democratic vote was so desperately needed. In the worlds of mental health and addiction—which were still very much divided politically—Wellstone had been the most powerful figure in government who insisted there could be no true mental health parity, no true end to the discrimination, unless addiction care was included.
For a decade in the Senate, he had been saving up chits for the day when he could call them all in and get the parity bill he wanted.
Suddenly, in an instant, he was gone.
We were all heartbroken. Paul was my neighbor and my friend; I loved him and we shared a passion for this cause. I wanted to do everything I could to continue his work on parity.
Besides mourning his loss, we had an immediate political problem: he couldn’t remain on the ballot, and his seat was crucial to maintaining the very close party balance in the Senate. He had already been in a very close race, made closer by voting against the Iraq War. Former VP Walter Mondale was quickly put into Wellstone’s spot on the ballot, but he ended up losing to a Republican challenger, which gave the GOP a clear majority in the Senate.
The Democrats actually lost four seats in the House in that 2002 election. I kept my seat, but we were worse off than before. Dick Gephardt decided not to run again for Minority Leader (and later not to run again for his seat), so we elevated Minority Whip Nancy Pelosi, making her the first woman to ever lead a major party in Congress.
Nancy was a strong, smart San Francisco liberal with a unique emotional presence not usually found at the highest levels of Washington—I hesitate to use the term “maternal” because she was that but so much more. She was a leader in the old-school tradition of really taking care of her members. She had kids my age and, like any prominent progressive of her era, had watched me grow up—actually, she was still watching me try to grow up—in politics.
I had first met her when I was only nine or ten. I was sent on a summer trip to California with a bunch of my classmates, and we arranged to stay in people’s homes. Since I was allergic to almost everything, and my dad knew that the Pelosi house was smoke-free and pet-free, he asked if she would be willing to put me up, along with a few other kids. We pretty much went wild there, and I started a water fight in their elegant home, just barely missing all their wonderful art and other memorabilia. (Nancy always claimed she forgave me.) I had gotten to know her better during my time at the DCCC and while serving with her on Appropriations. Now she was the new boss.
—
OVER THAT CHRISTMAS, we found out that my sister, Kara, then forty-two, had lung cancer. It was a particularly challenging form of the cancer, so she; her husband, Michael; and their two young children, my niece and nephew Grace and Max, were facing quite a trial in the new year: ambitious surgery and then a course of chemotherapy. Just as my brother had, Kara went from Washington to Boston for all this care, making regular trips up to get her chemo at Dana Farber. Both treatments, thank god, were successful.
My mom’s health, however, was getting worse and worse. She was now in her midsixties, a time that for some with addictions or mental illnesses can be associated with a lessening of symptoms as the body starts slowing down. But her drinking, depression, and anxiety were so advanced that while Kara was still recovering from cancer treatments, she, Teddy, and I were discussing the stunning possibility that we might have to take over our mother’s medical care ourselves and become her legal guardians.
Over the next year, Mom was hospitalized for alcohol-related issues five different times in the inpatient unit at Mass General. During the last hospitalization, the caregivers at the hospital suggested we try something that was becoming popular in mental health and addiction care—a family contract, in which Mom acknowledged in writing her alcoholism and depression and the need for proper treatment to prevent a relapse. In this case, the contract was created as a precursor to what we felt needed to happen if inpatient treatment failed again: my brother, Teddy, would become her temporary guardian, and we would develop both a medical plan and an estate plan, so nobody could take financial advantage of my mom.
These legal matters are a part of the care of mental illness and substance use disorders that most people know little about. I know I didn’t. The guardianships themselves were part of the family court system in each state. But before families reached this extreme point, there were a growing number of mental health courts in each state—and a variety of cities—that oversaw everything from involuntary inpatient commitments to court-ordered outpatient treatment with medicine (called “assisted outpatient treatment” or “outpatient commitment”). The mental health court system had been growing since 2000, when Congress expanded funding for it with the America’s Law Enforcement and Mental Health Project act. Sponsored by Republican Senator Mike DeWine from Ohio, the law helped deal with the exploding problem of mental illness in prison and the 25 to 40 percent of all Americans with mental illness who had some interaction with the criminal justice system. (I was involved in the funding of these mental health courts—as well as drug courts and veterans’ courts—as part of my duties serving on the Justice Appropriations.) As my mother’s case was being heard, a second mental health judicial bill, the Mentally Ill Offender Treatment and Crime Reduction Act, was on its way to approval.
Mom agreed that after being discharged from the hospital, she would go to the Hanley-Hazelden treatment center in West Palm Beach and complete the twenty-eight-day program there. Then we would speak again. But when she returned, nothing had improved. So the next step was getting a statement from her doctor that her illness was so incapacitating that she was incapable of caring for her personal and financial affairs.
I would say this was heartbreaking, but I’m not sure any of us could actually afford to make contact with how we really felt. Even in our lives, this was off any scale.
The doctor wrote that even during her times of sobriety she didn’t seem to have enough insight into her illness to appreciate the repercussions of her drinking. He worried about her decision-making processes and her understanding of the consequences of her actions.
I can’t imagine what it must have been like for my mom to read this assessment and go through this harsh legal process. And through the history of court-ordered treatment, every family has had to balance the medical need with the real possibility that their loved one will never truly forgive them for the measures required to help save their lives. In the future, perhaps people with mental illnesses and addictions will rely more on advance directives—signed when they are well—so that when court-ordered care is truly needed, they can be reminded it was they who once thought it was a good idea. That would certainly help in some situations. But court-ordered care and medical guardianship are always going to be emotionally scarring. All we can do is acknowledge the scars and try to help heal them.
—
WHILE BROAD MENTAL HEALTH REFORM was still pretty much on the shelf, there was suddenly a dramatic push in the Senate for new legislation to prevent the epidemic of teen suicides. There had been interest in this area for some time, but it took
the personal tragedy of a prominent member of the Senate to actually get action: the suicide of Garrett Lee Smith, the son of Oregon Republican Gordon Smith, on September 8, 2003, the eve of his twenty-second birthday. Garrett had been struggling with bipolar disorder. His parents and sister were aware of the struggle, and he was receiving treatment, which is why his death had been especially devastating.
Six months after Garrett’s death, Gordon Smith gave some of the most heart-wrenching testimony ever heard in a Senate committee hearing about his son and his loss. It was so moving and persuasive, on a subject so difficult for the public and politicians, that several of his colleagues decided to take decisive action. They combined two separate bills they were hoping to get through that session—one to increase mental health services for college students, the other to expand youth suicide early intervention and prevention—and named the resulting legislation the Garrett Lee Smith Memorial Act. When the bill came up for a vote on the Senate floor on July 8, 2004, Smith’s fellow legislators were so moved by his courage and his open heart that they too shared personal experiences during the debate.
Democratic Senator Harry Reid of Nevada, then Minority Whip, rose and spoke about his father’s suicide. While some senators knew he had lost his father this way, some thirty years before, they had never heard him speak so openly about it. He described how, in 1972 when he was Lieutenant Governor, he had been visiting at Muhammad Ali’s Nevada training camp, and when he returned to his office his receptionist said his mother was on the phone.
“I picked up the phone,” he recalled, and he heard his mother say, “Your pop shot himself.” Later he realized that his father had been planning it for a while, and the last time he saw him—a week before—he had given his son one of his prized possessions, an ore specimen from his days as a miner. Reid had first revealed his father’s suicide at a hearing for the Senate Special Committee on Aging in the 1990s, moved to reveal his own story after hearing Mike Wallace talk about his experience with depression.
A Common Struggle: A Personal Journey Through the Past and Future of Mental Illness and Addiction Page 19
