Friday, October 19, 2012
Thursday, October 18, 2012
My son is schizophrenic. The ‘reforms’ that I worked for have worsened his life. - The Washington Post
If you were to encounter my son, Tim, a tall, gaunt man in ragged clothes, on a San Francisco street, you might step away from him. His clothes, his dark unshaven face and his wild curly hair stamp him as the stereotype of the chronically mentally ill street person.
People are afraid of what they see when they glance at Tim. Policymakers pass ordinances to keep people who look like him at arm's length. But when you look just a little more closely, what you find is a young man with a sly smile, quick wit and an inquisitive mind who — when he's healthy — bears a striking resemblance to the youthful Muhammad Ali.
Tim is homeless. But when he was a toddler, my colleagues in the Connecticut state legislature couldn't get enough of cuddling him. Yet it's the policies of my generation of policymakers that put that formerly adorable toddler — now a troubled 6-foot-5 adult — on the street. And unless something changes, the policies of today's generation of policymakers will keep him there.
How it went wrong
I was 25 years old in 1978 when I entered the Connecticut House. I had a seat on the Appropriations Committee and, as the person with the least seniority, was assigned last to my subcommittees. "You're going to be on the Health subcommittee," the committee chairs informed me. "But I don't want to be on Health," I complained. "Neither does anyone else," they said. Six weeks into my legislative career, I was the legislature's reluctant new expert on mental health.
The 1980s was the decade when many of the state's large mental hospitals were emptied. After years of neglect, the hospitals' programs and buildings were in decay. In my new legislative role, I jumped at the opportunity to move people out of "those places." I initiated funding for community mental health and substance abuse treatment programs for adults, returned young people from institution-based "special school districts" to schools in their home towns and provided for care coordinators to help manage the transition of people back into the community.
But we legislators in Connecticut and many other states made a series of critical misjudgments.
First, we didn't understand how poorly prepared the public schools were to educate children with serious mental illnesses.
Second, we didn't adequately fund community agencies to meet new demands for community mental health services — ultimately forcing our county jails to fill the void.
And third, we didn't realize how important it would be to create collaborations among educators, primary-care clinicians, mental-health professionals, social-services providers, even members of the criminal justice system, to give people with serious mental illnesses a reasonable chance of living successfully in the community.
During the 25 years since, I've experienced firsthand the devastating consequences of these mistakes.
Every year, one in every five children and one in every four adults has a diagnosable mental illness. A quarter of all mental illnesses are considered serious. Until Tim came into my life in 1985, I had no experience with mental illness in my immediate family.
I can't point to a single time when I first realized Tim's problems were not just normal. The day he lay down in the middle of the road — just to see if a car would run him over — comes to mind, however.
Tim's mental illness turned out to be a serious one — schizophrenia — but the disease wasn't diagnosed until he was 17, after he'd been sick for more than a decade. That's pretty much the norm for serious mental illness: Typically, 10 years pass from the time people show symptoms of mental illness to the time they receive appropriate treatment.
When Tim entered elementary school, it took us three years to convince school officials that his symptoms weren't caused by problems with Tim's having been adopted, his racial identity (we're white, he's black) or our parenting. That by then we had three children younger than Tim who also were adopted transracially and were thriving helped make our case. The school's evaluations suggested he had what was then called attention deficit disorder and some learning disabilities. He was admitted into special education, and the school drew up a mandated individualized education plan (IEP) for him. It focused mostly on helping with his organizational skills and, at the school's insistence, his "self-esteem."
Tim's mental illness wasn't being addressed, though. And it turned out that Tim probably didn't really have attention deficit disorder. Soon his symptoms grew worse. On many nights, he wandered the house instead of sleeping. One day, after his 5-year-old brother had broken one of Tim's prized toys, Tim pulled a knife from a kitchen drawer to attack him. It was a few weeks after that, on a cold winter night, that he suddenly raced out of the house wearing nothing but his underwear, strapped on a pair of in-line skates and went skating down the middle of a busy state highway. He began to report that he was hearing voices.
Tim was finally hospitalized as he turned 11, and he received a diagnosis of a sleep disorder, depression and, after a year of counseling, post-traumatic stress disorder.
Tim's IEP clearly needed to be revised after he received his new diagnoses. But his principal told me repeatedly that "he just needs to follow the rules," as if Tim could will away his illness. In a due-process hearing we then demanded, Tim's special education teacher declared that Tim's biggest problem was "overprotective parents."
Blaming people with mental illness — or their families — for the mental illness isn't new. And it carries a cost. The cost to Tim: Beginning in sixth grade, he would never complete another full year of school on schedule.
The fragmented years
What followed were many years during which one public school after another knew it couldn't educate my son but had nothing to offer, holding him back in one case and bumping him ahead in another.
Trouble seemed to find him. Self-medicating with marijuana, Tim's drug of choice for lowering the volume of the voices in his head, got him suspended from the first high school he attended — a public, vocational-technical school in Middletown, Conn. — and placed on court-ordered probation. Fighting with another student got him expelled from the next one, a private boarding school that the juvenile court and school system had sent him to in Idaho.
Back in Connecticut after being arrested for trespassing, he was placed in a teen mental-health inpatient program by the juvenile court. Fighting with another student also got him expelled from the fourth school, a small, private school that specialized in educating teenagers who had had trouble succeeding in regular high schools. A public high school in Austin, where I'd moved after his mother and I divorced, then admitted him because the law required it to, but only for the last six weeks of the school year. It provided no IEP and essentially lost track of him.
During a span of 30 months, those five schools were Tim's "freshman year." Had educators actively sought input from outside mental health professionals, they might have seen that Tim's illness was beginning to overwhelm him: "I'm in a tired, tired state all day," he told one counselor. "I worry about stuff a lot. I don't like having friends; it's hard to find people who are like me. When I'm really, really sad, I cry. When I'm a little sad, I sit and stare."
Insurer made matters worse
On more than one occasion, my insurance company also contributed to Tim's problems. Here are two examples among many:
●When Tim was 15 and needed to be hospitalized while in Idaho, my insurer forced his discharge to a non-secure residential drug rehab program in Connecticut — even though Tim wasn't using drugs at the time. He ran away 72 hours later. That led to his arrest for trespassing and a six-week stay in juvenile detention.
●When Tim was 17, he was hospitalized while visiting his mother in Connecticut. My insurer refused to authorize more than a few days of inpatient treatment, and so the hospital discharged him before he was stable. Soon I found him camping outside my home in his underwear in near-freezing temperatures, and I had to hospitalize him again. Afterward, my insurer said that because of his history, Tim now was eligible for enhanced case-management services. It also said that he'd exhausted his lifetime benefits.
When Tim turned 18, he had no high school diploma, no job prospects and a debilitating mental illness. Legally an adult, he also decided he wanted to live on his own. With a brand-new diagnosis of schizophrenia, Tim was eligible for a variety of support services, but he now told us he didn't want them. He was tired of counseling and he didn't like the side effects of the antipsychotic drugs prescribed for him. He also didn't want a caseworker checking in on him.
He got his wish. None of the overextended caseworkers assigned to him had time to devote to an unwilling client such as Tim.
I found him supported housing three times in three years, but he was evicted each time for various infractions. When Tim finally found a landlord willing to rent him a place on his own, the mental health agency's housing personnel gave him a bad reference. That kept Tim living on the streets, and eventually he drifted into homelessness and incarceration. When he was in jail, with its regular routines and meals, Tim usually stabilized. But when he was released — because he went back to the streets instead of to a service provider — he destabilized right away, which in his case meant becoming highly agitated and paranoid, and hearing voices.
In 2008, at age 23, Tim moved to San Francisco and has lived mostly on the streets there ever since.
The last time I visited him, he was holed up for a while in a small room a caseworker had found him in a Mission District rooming house. His only furniture was a bare mattress on the floor; a rat and flies were his companions. Sadly, he seemed content.
This is the mental health delivery system that I helped build.
These terminologies — and the realities they represent — were things that policymakers thought about too narrowly. The word "disability," for instance, should have covered Tim and children like him. But as a friend who worked a generation ago on drafting the regulations for the federal government's Individuals with Disabilities Education Act told me, "Paul, we were thinking of kids in wheelchairs."
It's no wonder that children like Tim graduate from one kind of cell to another when they grow up. On the basis solely of the numbers of people with mental illness who are incarcerated in them, the three largest "mental health facilities" in the nation are Riker's Island in New York, the Cook County Jail in Illinois and the Los Angeles County Jail. The two most stable addresses in Tim's adult life have been the Travis County Correctional Complex in Del Valle, Tex., and the San Francisco County Jail.
If I were a legislator today, I'd mandate — and provide funding to ensure — that every teacher receive training in recognizing symptoms of mental illnesses. I'd see that pediatricians are trained to make screening for mental health concerns a regular part of well-child exams. I'd require school administrators to incorporate recommendations from pediatricians and mental health professionals into students' IEPs.
I'd put much more money into community mental health services. I'd integrate how services are delivered by funding collaborative community mental health programs and have them run by mental health professionals. I'd include services for chronically homeless people under this collaborative umbrella.
At the same time, to clear our county jails of people with mental illnesses, I'd get rid of laws targeting homeless people, such as those against loitering or sitting on a sidewalk. And I'd make sure that there was supportive short-term and long-term community housing and treatment for everyone needing them. Both were promised almost 50 years ago in the federal Community Mental Health Centers Act of 1964 — promises that were broken when it was repealed in 1981 and replaced by a block grant to states.
Mental illnesses cost as much as cancers to treat each year, and the National Institute for Mental Health notes that serious mental illnesses can reduce life expectancy by more than 25 years. That reduction is almost twice the 13 years of life lost, on average, to all cancers combined. When Tim needed hospitalization, an insurer sent him to drug rehab. Imagine the outcry if the insurer had tried to send a smoker with lung cancer who needed hospitalization to drug rehab.
Perhaps, even if Tim had gotten earlier, more effective and better integrated care, he still would have become homeless. But I don't believe that. Tim is where he is today because of a host of public policy decisions we've made in this country. It took a nation to get Tim there. And it will take a national commitment to get him — and others like him — back.
A former legislator and mayor, Gionfriddo has worked for more than 30 years in the fields of health and mental health policy. He is author of the weekly blog Our Health Policy Matters. This article was excerpted from the Narrative Matters section of the journal Health Affairs and can be read in full at www.healthaffairs.com.
Wednesday, October 17, 2012
Tuesday, October 16, 2012
Often the worst part of a visit to the doctor isn't the awkward hospital gown, needle sticks or embarrassing physical exams — it's the drawn-out wait, camped out in the reception room in the company of sick patients and old magazines.
During a particularly long wait to see his dermatologist, Parker Oks, 18, thought there had to be a better way.
"They know approximately how long an appointment will take," said Mr. Oks, a freshman at Boston University. "But the problem is that they don't know how long it will actually take."
That realization led Mr. Oks to create Appointment Status, a Web site devoted to improving appointment efficiency and providing patients with information to avoid long waits. Working with three teenagers from Staten Island Technical High School, where he had gone, Mr. Oks aims to make it easier for patients to schedule appointments — and to find out how far behind the doctor may be before settling into a waiting room chair.
It's one of several innovations meant to help patients. While many digital developments — electronic medical records and mobile medical encyclopedias — have streamlined doctors' work, new tools for patients are starting to hit cellphones and the Internet offering help in keeping track of medications, recording heart rate and glucose levels and managing personal and family medical history, among other tasks.
Appointment Status is designed to assist patients before they even take a seat in a waiting room — a sore point for many patients, as doctors well know. In a survey conducted by the doctor-review Web site Vitals, patients reported an average wait time of 21 minutes to see a doctor. Mississippi had the longest reported wait time, at just over 25 minutes.
Some patients say that's about as long a wait as they will tolerate.
"I'm willing to wait to see a doctor for about 20 minutes before I go talk to the receptionist, and after a 45-minute wait, I always leave and reschedule," said Maureen Green, a journalist from Syracuse. "Everybody's time is valuable, not just the doctor's time."
Developers and entrepreneurs are starting to tap into this frustration, as well as other rifts in doctor-patient relations. Mr. Oks said his next step is a mobile app to inform patients about delays.
Another service, ZocDoc, is also meant to help patients save time with doctor visits. Created by Cyrus Massoumi, Dr. Oliver Kharraz and Nick Ganju, ZocDoc allows patients to peer into a doctor's appointment book and schedule a visit through the Web.
ZocDoc has already been expanded with a new tool, ZocDoc Check-In, made available last month to help eliminate another cause of waiting room tedium: filling out a clipboard of forms.
"You're always handed a stack of forms to fill out when you enter a doctor's office," said Mr. Massoumi, the chief executive of ZocDoc. "And all the information is 80 percent the same as the last time you filled it out."
ZocDoc Check-In also enters patient's personal information in other doctors' forms, so there is no need to fill out a name and date of birth multiple times.
While these kinds of tools are becoming more common — ZocDoc is now being used in more than a thousand cities by doctors in more than 40 specialties — Mr. Oks is facing some resistance to his Appointment Status app.
"A lot of the doctors I've approached are set in their ways and skeptical," Mr. Oks said. "We've found some offices don't even have an Internet connection for their receptionists."
ZocDoc may have caught on because it helps doctors as well as patients.
"It's a win-win," Mr. Massoumi said. "Patients need convenience in scheduling a doctor's appointment, and from a doctor's standpoint, ZocDoc brings them patients and helps office staff manage their time."
Nevertheless, Mr. Massoumi said it took him a while to reach the point that doctors contact him about obtaining the technology.
Dr. Kamal Ramani, a general practitioner in Manhattan, said he adopted ZocDoc three years ago, when he moved his office and was looking for a way to save time and money.
"My staff doesn't have to be on the phone with patients suggesting time slots," Dr. Ramani said. "It streamlines the appointment-making process on both ends."
At the same time, some new technology that was developed for more efficient medical care delivery has some benefits for patients as well. For instance, despite widespread concerns about security and the potential for errors, electronic medical records can save patients time and improve communication.
Dr. Steven K. Magid, a rheumatologist whose office is at the Hospital for Special Surgery in Manhattan, said that initially he was worried about the time commitment needed to enter all of a patient's information digitally, but now he sees the benefits.
"It's faster for me to write a list of medications on a piece of paper than to do it on the computer," Dr. Magid said. "But on the back end I save time because everything is legible and everyone is working off the same list."
Patients' treatment instructions are clearly typed out, generating fewer calls to his office — and to him. And when patients still are confused or a new matter arises, his staff can address the problem without him by looking up the information in the digital record.
Eventually, say some, patients will expect their doctors to adopt these kinds of timesaving tools.
"There's a tipping point," Dr. Magid said. "There is going to be a shift."
For years, virtually every new mother has been sent home from the hospital with a gift bag full of free product samples, including infant formula.
Now health authorities and breast-feeding advocates are leading a nationwide effort to ban formula samples, which often come in stylish bags with formula company logos. Health experts say they can sway women away from breast-feeding.
As of 2011, nearly half of about 2,600 hospitals in a survey by the Centers for Disease Control and Prevention had stopped giving formula samples to breast-feeding mothers, up from a quarter in 2007. The survey did not ask about distributing samples to non-nursing mothers.
Recently, 24 hospitals in Oklahoma agreed to a ban, and Massachusetts became the second state, after Rhode Island, in which all hospitals halted free samples. In New York City, Mayor Michael R. Bloomberg started the "Latch On NYC" campaign, urging hospitals to stop giveaways and monitor formula like other medical supplies, stored in locked cabinets and accounted for when mothers have medical needs or request it; 28 of 40 hospitals have agreed.
The debate over formula samples isn't about whether breast-feeding is healthier. Even formula companies acknowledge that "breast milk is the gold standard; it's the best for babies," said Christopher Perille, a spokesman for Mead Johnson, which makes Enfamil formula.
Breast-feeding decreases babies' risk of ear infections, diarrhea, asthma and other diseases, and may reduce risk of obesity and slightly improve I.Q., experts say. The question is whether samples tempt mothers who could breast-feed exclusively for the recommended six months to use formula when they're exhausted or discouraged if nursing proves difficult. The C.D.C., the World Health Organization and breast-feeding advocates say samples turn hospitals into formula sales agents and imply that hospitals think formula is as healthy as breast-feeding. Health experts warn that even small amounts of formula dilute breast-feeding's benefits by altering intestinal micro-organisms and decreasing breast milk supply, since women produce less when babies nurse less. They say that while some women face serious breast-feeding challenges, more could nurse longer with greater support, and that formula samples can weaken that support system.
"We're not anti-formula," said Dr. Melissa Bartick, a founder of Ban the Bags, a breast-feeding advocacy group, which reports that one-fifth of the country's nearly 3,300 birthing programs have taken more comprehensive steps of banning samples and logo-emblazoned bags for all mothers. "If a woman makes an informed choice to formula-feed, the hospital should provide that formula. But hospitals shouldn't be marketing it."
The industry and some mothers say samples provide a healthy alternative and offer relief if nursing causes pain, fatigue or frustration. They disagree that samples can shake the resolve to breast-feed exclusively.
"Babies grow fine on it," said Mardi Mountford, executive vice president of the International Formula Council, who breast-fed her baby exclusively. "And moms tell us they like getting the samples."
Ann Roberts, 32, a book buyer in Atlanta, said she had wanted to breast-feed exclusively, but found it painful and her daughter was underweight. The sample "gave me peace of mind," she said. "It would have added stress to have to send my husband to the grocery store to buy formula." She continued supplementing with formula, and like many women who formula-feed, bought the brand the hospital gave out. "We are using that brand because we got the sample," she said.
Do samples sway women to use formula in the first place? Some studies have found that women who receive samples do not breast-feed as long as those who don't; others found no significant connection. People on either side of the sample issue agree that hospitals should support breast-feeding in many ways.
The campaign to ban samples stirs strong feelings among mothers, including those who are health care providers.
Megan Caron, 27, a nurse in Massachusetts, felt a sample coaxed her to capitulate when breast-feeding her daughter became challenging. "If it wasn't there, I think I would have tried a little bit more to get breast-feeding down," she said. "And once they get formula, it's hard to get them back."
Dr. Rachel Freedman, 34, an oncologist, had a different experience after giving birth this year at her hospital, Brigham and Women's in Boston. It long ago banned formula samples. But Dr. Freedman, who said she intended to breast-feed but had difficulty, concluded that samples could be "nice when you're a mother and you get into a pinch in the middle of the night and you're exhausted." When her milk did not come in, nurses encouraged her not to give up. But after hours of trying, "we broke down" and gave formula, she said. Her milk came in two weeks later, but not enough to nurse exclusively. "Maybe I wasn't patient enough, but at the time I thought he was starving," Dr. Freedman said of her son.
Dr. Nicole Leopardi, 30, a pediatrician, said the sample she got after giving birth at Virtua Hospital in Voorhees, N.J., in 2006, helped influence her to supplement with formula when she became worried she wasn't producing enough milk. "Since it was available, I think I probably kept doing it those early days," she said. "I was under the misconception that that would help the baby be more satisfied." This year, Dr. Leopardi gave birth at Cooper University Hospital in Camden, where she is affiliated. Cooper recently banned formula samples, and she said its unequivocal breast-feeding support helped her keep nursing.
At Cooper, where 70 percent of mothers were formula-feeding, the ban improved breast-feeding rates significantly. In a study, Dr. Lori Winter, a pediatrics professor at the University of Medicine and Dentistry of New Jersey, introduced hospital bags without formula logos or samples. At first, she was stunned to find that mothers were receiving formula samples anyway. Nurses were slipping them in, she said, because "they didn't believe these babies weren't going to starve. Cooper began storing formula in locked cabinets and having nurses document when mothers had medical needs or requested it. Now, 70 percent breast-feed in the hospital.
Other hospitals say they do not believe samples discourage breast-feeding. At Virtua, which runs two maternity hospitals in suburban New Jersey, Dr. Alka Kohli, vice president of medical affairs, said officials would re-evaluate formula giveaways. But she said that because of Virtua's breast-feeding programs, "despite the fact that formula sits around, our breast-feeding rates climb every year."
"Ban the Bags" campaigns have seeped into politics. Mayor Bloomberg's critics call "Latch On NYC" another nanny-state initiative. Breast-feeding advocates are criticizing Mitt Romney's 2006 decisions as Massachusetts governor to pressure the state's Public Health Council to reverse a ban on formula giveaways, and replace three council members who objected.
When UMass Memorial Medical Center in Worcester eliminated samples in 2005, people complained, said Dr. Ellen Delpapa, chief of maternal-fetal medicine. UMass partly retrenched, giving coupons for free formula to women not exclusively breast-feeding. Only when more Massachusetts hospitals stopped samples did UMass reimpose its ban.
Some hospitals say manufacturers make banning giveaways harder. Dr. Winter called it "a big production to disengage companies from flooding us with these bags," adding, "I was reported to the chief of neonatology because the companies said I refused to meet with them."
At Beverly Hospital, the last Massachusetts hospital to ban samples, companies "were very infiltrated," said Rebecca Gadon, director of maternal, newborn and cancer care. She arrived in 2008 to find formula companies giving the staff gifts and paying for continuing education classes.
Hospitals often also receive all formula supplies free from manufacturers, providing incentives to cooperate. Many hospitals continue to accept supplies after banning samples, although the C.D.C. and other agencies discourage this. UMass Memorial still accepts Similac and Enfamil, and while it is considering buying formula, "when they tell us how much we're getting for free, that's worth a lot," Dr. Delpapa said.
The chief of the C.D.C.'s nutrition branch, Laurence Grummer-Strawn, said he was concerned enough that he had "spoken to people at formula companies suggesting they change their marketing practices."
He also tells hospitals to buy formula, with competitive bidding like for other supplies. "We shouldn't be receiving free giveaways from pharmaceutical companies, we shouldn't be receiving free giveaways from formula companies," Dr. Grummer-Strawn said.
Neither the Formula Council nor Mead Johnson would discuss marketing specifically. Abbott Nutrition, which makes Similac, deferred questions to the Formula Council. Mr. Perille of Mead Johnson said factors like birthrate and efficiency were more important to business success than sending samples to hospitals or pediatricians' offices.
Still, hospitals are "the ideal setting for new mothers to get information about feeding options," Mr. Perille said. And "if they're going to formula-feed, we would like them to choose our brand."