The number of mentally ill patients in state hospitals has dropped by 600,000 since its peak in the mid-1950s, facilitated by more effective psychotropic medications and advances in therapy. Not many years ago, mental illness was considered a lifelong affliction. Now, in millions of cases, that is no longer true.
But the care provided to mentally ill citizens has failed to keep pace with the medical advances. When President Kennedy signed the Community Mental Health Centers Act in 1963, it signaled the prospect of a new regional mental health network, one that would supplant custodial isolation with community concern and capability. Small pieces of that network have come into being. But for the most part, the vision remains unfulfilled.
Millions of people suffering from mental illnesses have struggled-- and failed--to maneuver through a web of inadequate emergency, inpatient and community care. "In many communities," a presidential commission reported last year, "access to quality care is poor, resulting in wasted resources and lost opportunities for recovery."
Many of the approximately 50,000 people still residing in institutions are stuck in a bottleneck: They want to leave the hospital but have nowhere to go because community care facilities are overburdened, and their continued confinement takes up scarce inpatient beds needed by others in crisis. What's more, people with private insurance often tap out their mental health benefits quickly and are left to be caught by the public mental health safety net.
While there have been some successful government-administered mental health programs, innovation in one county or state is unlikely to be reproduced across the border, particularly in tough budget times. "The problem with these projects," says Paul Appelbaum, chair of psychiatry at the University of Massachusetts Medical School, "is that they are islands of excellence in a sea of chaos."
In many cases, states and local governments can't prove their programs work. Contracts with mental health providers tend to emphasize outputs, and outcome measures are few and far between. That means there's little concrete data to prove that money is being spent efficiently and effectively.
CASE HISTORY
Institutional care for the mentally ill has traditionally been a state responsibility. States built the first so-called insane asylums in America in the mid 1800s, when they housed thousands of residents afflicted with a wide range of mental illnesses then scarcely comprehended, from depression to schizophrenia.Early on, the size of the institutionalized population was kept in check by the reluctance of families to admit that anyone in their household had a problem. In extreme cases, they denied that a troubled relative even existed. A child with severe schizophrenia was likely to be kept in the house, away from the eyes of neighbors or schoolmates. But as people grew accustomed to the idea that they could call upon help from the outside, the number of asylums--eventually called state hospitals--began to grow.
For decades, the entire enterprise existed at the periphery of public consciousness. Patients entered state hospitals, where they were fed, drugged and treated in one building, and kept under lock and key for years, if not for life. The policy of warehousing the mentally ill continued unabated until 1963, when Congress passed the Community Mental Health Centers Act. This bill encouraged deinstitutionalization and a move to providing services for troubled patients in small-scale facilities within their community. States were to be divided into regional areas, each with a center that would receive federal and state support to offer mental health treatment.
States enthusiastically embraced the concept, and by 2000 had closed 115 of 350 hospitals and dramatically reduced bed capacity in most of the others. They sold some of the buildings and converted others into correctional facilities. And thousands of former hospital patients made a successful transition to the community, living closer to their families in adult group homes and sometimes even their own apartments, with much-improved psychotropic medications to keep their illnesses in check.
But many others fell through the cracks. The regional funding model for mental health care was scaled back in the 1980s to a federal block grant, which currently supports only about 2 percent of total state mental health budgets. As states moved away from institutionalization, many ceded responsibility for direct care of the mentally ill to county governments. Initially, most states retained their role as direct funders of mental health services, but an increasing portion of that support now comes from Medicaid and state housing, corrections and education agencies. Mental health care is so widely dispersed that most states can't even pinpoint how much they spend on the services.
Today about 50,000 mentally ill people reside in state and county hospitals, and millions more navigate their way through the complex system for treatment each year, occasionally using acute care beds to get them over the roughest times but otherwise remaining largely unsupervised. These patients are "in the community" in the sense that they are not residents of large, segregated institutions, but they are not being treated in the community the way the 1963 law envisioned. Estimates are that about one-fifth of the adults in America suffer from mental illness each year, and only about half of those seek treatment. An estimated one-third of homeless adults have serious mental illnesses.
Going to Court
Given the history of care under the 1963 law, it is perhaps not surprising that mental health programs have been frequent targets for class-action suits charging that patients were housed or released inappropriately or neglected altogether. For some states, lawsuits have lingered on for decades. Last December, Alabama finally completed the terms of a consent decree stemming from the Wyatt case, a 1970 class-action suit brought by mentally ill residents who were involuntarily committed to state hospitals.
Maine has struggled since 1990 to comply with a consent decree that mandated improved care for patients during and after hospitalization. A court master now oversees the state's community-based system, and last October, a judge imposed a receiver to run the state hospital because of noncompliance. Maine has until March to show sufficient progress to the court, or a receiver will be imposed for the rest of the system as well.
One suit, Olmstead v. L.C., has forced the states to move further in the direction of deinstitutionalization. The thrust of the U.S. Supreme Court ruling in that 1999 case was that anyone willing and able to live in the community must have that option, regardless of physical or mental disability. But while Olmstead could generate a significant expansion in some types of community services, the move from hospitals to a community setting is expensive if it is to be successful. While there is federal grant money available to implement Olmstead, most states remain in the planning phase.
"The problem is the transition," says Sue Walther, of the Pennsylvania Mental Health Association. "We only have 33 slots funded to move people from state hospitals to the community." In recent years, nearly 2,400 patients have been institutionalized in Pennsylvania.
It's not clear how much time the states will be given to comply with the ruling or what will happen if they don't. In a 2002 survey by the National Association of State Mental Health Program Directors, a handful of states, including Arkansas and North Dakota, indicated they had no plans to transition people to community-based services as a result of Olmstead. The Supreme Court left a loophole: States could get around immediate implementation if it would require "a fundamental alteration" in their programming.
COMPLICATIONS
Task forces, committees and blue-ribbon commissions to consider reform of state mental health systems abounded during the prosperous years of the late 1990s. They produced plausible, well-intentioned recommendations. In Oregon, for example, Governor John Kitzhaber appointed a mental health alignment workgroup to consider what an ideal mental health system might be like; it ultimately found the existing system was funding little more than half of those responsibilities and issued recommendations for the rest.But the road to hell is paved with unfunded recommendations. Budgetary constraints have left all too many blue-ribbon reports with mildew on the pages. Oregon's grand plans were "a lifetime away from where we are now, with fiscal constraints," says Bob Nikkel, administrator of the Office of Mental Health and Addiction Services. "Now, we're scrambling to keep even 50 percent of what we need." Current Governor Ted Kulongoski has created a new task force to focus on reforming mental health given today's fiscal realities.
Meanwhile, however, Oregon's budget problems led this year to a temporary halt in all non-Medicaid outpatient care and almost all non- Medicaid crisis services. About 1,000 behavioral health workers lost their jobs statewide. Most of the services have been restored with funds from a new tax surcharge, but voters have a chance to roll back the surcharge early this month, which would slice the programs once again.
Mental health directors throughout the country are facing similar pressures. According to the National Mental Health Association, at least 29 states cut their mental health expenditures in 2002, with 35 doing so in 2003. Among the worst hit has been South Carolina, which lost $34.5 million to cuts in 2001 and 2002, and another $28 million in 2003. In Georgia, the Department of Mental Health cut 2.5 percent from its current year budget and will have to cut 5 percent next year. "We don't have a lot of fat to cut because we haven't had much revenue growth," says program chief Cherry Finn. "But we're expected to step up with our share of the budget cuts."
Some states are bucking the trend. Nevada Governor Kenny Guinn made headlines last year when he pushed a nearly $900 million tax increase through the legislature. Guinn used a substantial chunk of the money-- almost $90 million--to bolster the Mental Health Department, increasing the department's budget by 31 percent in 2004. Nebraska funneled $12 million of its tobacco settlement funds in 2001 and 2002 to expand mental health and substance-abuse programs.
There's a lot to spend those dollars on, as care for the mentally ill grows more sophisticated but also more expensive. Psychotropic drugs, which were introduced with Thorazine in the 1950s, are now the fastest growing line item in state mental health hospital budgets. The price of antidepressants, including Prozac and Paxil, rose 7.5 percent between 2000 and 2001, while the cost of drugs that fight psychotic illnesses such as schizophrenia jumped more than 16 percent during the same time.
This is an instance in which the dual goals of quality care and cost control are at odds. There's little question that many of the medications have improved the lives of the mentally ill, and newer drugs have fewer side effects and are more effective than earlier generations. As a result, people are far more willing to continue taking them. The more willing they are to persevere in treatment, the more the cost rises.
Medicaid Enters the Picture
Even if states were able to come up with additional money for mental health treatment, the involvement of Medicaid would remain a serious complicating factor. The Medicaid program is currently footing the bill for more than 50 percent of mental health expenditures nationwide, and in many cases, reductions in state dollars cause reductions in Medicaid matching funds. In South Carolina, the state cuts have resulted in a loss of at least $5 million in federal payments.
Medicaid doesn't cover treatment costs for people between 21 and 64 years old if they are living in mental institutions, but it does cover much of the expense if they are under community care. This has left some states with a two-tiered approach, under which more mental health services are available to Medicaid recipients than to the non-eligible population. As the number of mentally ill receiving treatment in the community grows, so does Medicaid's portion of the payer pie--and its control over the programs.
Richard Frank, professor of health economics at Harvard Medical School, says the dynamic between Medicaid and state mental health agencies is one of the major issues facing the entire mental health field today. "Now that the state mental health authority isn't the biggest show in town anymore," he asks, "who has stewardship for the care of the mentally ill?"
In many states, it's hard to find an answer. Medicaid foots the bill, while housing agencies, corrections agencies and an assortment of others arrange for care. In most states, the least involved are the state mental health agencies, which often are little more than conduits of cash as opposed to planners or quality-control centers. They're responsible only for plans that address their small federal block grants, and are largely left out of other agencies' decision making.
Comprehensive planning that involves all the parties responsible for providing mental health services has the potential to reduce fragmentation, but it's rare. Instead, planning tends to take place within individual agencies, leading to uncoordinated--and sometimes contradictory--service delivery. "There is a need for broader-based planning to address those silos," says Robert Glover, executive director of the National Association of State Mental Health Program Directors.
The Bed Shortage
Cash shortages have, among other problems, put pressure on the number of acute care beds available for patients in need of short-term inpatient stays to control a psychiatric crisis. One reason is that some governments have dealt with cash shortages by cutting back on pay for providers. As a result, physicians and hospitals are opting out of the system. Many states are watching as private hospitals turn their psychiatric inpatient wards into more profitable cardiovascular and obstetric space. Alabama alone has lost more than 400 psychiatric acute care beds in private hospitals as a result of fiscal pressures.
With fewer acute care beds in some states, people in need are left on long waiting lists, in emergency rooms and in jails. Sometimes the closest available bed is 100 miles away or in another state, complicating family visits and follow-up care.
These barriers to access made headlines last year in South Carolina, which operates just two emergency mental health facilities. Seventy people waited in jails because they couldn't access court-ordered treatment, until a state Supreme Court justice ordered the mental health department to find space for them.
The state has since awarded $1.7 million to 10 community mental health centers to implement programs that will keep people out of emergency rooms and to make room in the community for those who are able to leave the state psychiatric hospitals. Mental Health Director George Gintoli says he hopes the grants will cut South Carolina's waiting list in half by freeing up needed beds in the two state hospitals.
Last year, Vermont lost federal funding for its state hospital, which could amount to as much as $3 million, when a host of problems-- including the failure to provide all patients with active treatment-- were identified through inspections by the federal Centers for Medicare and Medicaid Services. The hospital, which once held 1,300 people, is down to 54 beds.
"Because we have focused so much on community services, we've not paid the attention we needed to the role of the state hospital," admits Susan Besio, Vermont's commissioner of developmental and mental health services. In response to the CMS report, Governor Jim Douglas increased state funding for the hospital by 21 percent to add staff and improve treatment. The hospital hopes to be recertified by CMS by July.
Insufficient community housing is an equally severe problem. Most patients released from hospitals to the community need some form of supervised living, but the supply of such housing units does not even come close to meeting the demand. Of the 50,000 people who are still living in state mental hospitals, a significant percentage would like to leave but have nowhere to go that provides an appropriate level of treatment.
In rural America, lack of access to all types of mental health treatment is particularly severe. Carlos Brandenburg, Nevada's mental health and developmental services administrator, ranks the inadequate supply of rural clinicians among his top challenges. "Twenty-three percent of the state's mental health jobs in rural areas are vacant. All of my psychiatrists," he says, "are basically tourists in rural areas."
No Data, No Money
One problem that mental health advocates face when they try to loosen legislative purse strings: There's a numbing lack of information at the state level about which programs work well and which don't. To a large extent, mental health program data continue to be reported as outputs, detailing the number of patients treated in a given month but not the number judged to have made significant progress.
As in other areas of health care, state officials realize that if they want more money, they are going to need more proof of results. "Dollars are not flowing freely," says Pennsylvania's Sue Walther. "We are going to need to have our case in hand." And that case is often made most persuasively through the use of hard data.
Part of the problem stems from the decentralized nature of mental health programs. Even within a single state, different counties work off different technology platforms, and contractors use varying methods of reporting data. That combination makes it arduous to tease out usable information.
In a few states, decentralization has resulted in even more serious problems. Georgia moved in 1993 from statewide administration to regional boards, each of these contracting with community service boards to provide the actual mental health care. Patient advocates commended the move, until the regional boards proved unable to fulfill their responsibilities of planning and overseeing services. Two of the community service boards are under investigation for Medicaid fraud, and the state turned to consultants to fix a projected $6.5 million deficit in a third. Similar problems have occurred in Michigan's locally administered system, leading to state Senate hearings and plans for a governor's task force to look into major reforms.
REMEDIES
Parity Laws
One popular attempt to improve mental health treatment involves "parity laws"--mandates at both the state and federal levels requiring that private insurance companies provide equal coverage for physical and mental illness. Without such laws, people with mental illness frequently run up against caps on treatment, both in the number of visits allowed and the costs the insurer will cover.
States have a substantial interest in the establishment of parity in private as well as public treatment. In the absence of parity, people max out their private insurance benefits and move to the public system sooner, adding to the government's bill.
So far, 39 states have enacted some form of parity legislation. Indiana phased in its parity law, first covering state employees as a pilot and then expanding to the general population; South Carolina is taking the same approach. Vermont's parity law, widely considered the most comprehensive nationwide, covers both mental illness and substance abuse treatment. Now five years old, it seems to be working: A study found that employers didn't drop coverage as a result of the law, access to outpatient mental health services improved, consumer spending on mental health treatment declined and health plan spending- -in this case, Blue Cross--rose only 4.4 percent.
Still, insurance companies tend to fight against parity laws, contending that they drive up health care costs. Partially as a result, advocates in some states have fought--and lost--on this issue multiple times. Says Sue Walther, a veteran of two go-rounds in Pennsylvania, "If you offer parity in a time when the system is struggling to meet needs, you free up dollars for public care. But that's not the argument that wins the day. I don't see it happening anytime soon."
Spend Now, Save Later
To their credit, a reasonable number of states are trying to take a long-term approach to mental health systems, on the premise that better care not only benefits the patients but saves money in the long run. Arizona, for example, spent $35 million to open a new 200-bed adult state hospital last year; an adjoining 16-bed inpatient adolescent facility opened in 2002. The hospital was designed to be a "rehabilitative mall," with separate areas for living, dining, therapy, shopping and other daily activities. If the theory behind this project holds true, the patients who use this facility will eventually be better able to survive on their own with minimal care, thus avoiding the public cost of more intensive long-term treatment.
Minnesota, aware of the advantages of community-based care but conscious of the obstacles, adopted the "rehab option" in 2001, under which states can use Medicaid funding for a broad range of services at the community level, including medication management and daily living skills, as an alternative to spending the money on hospitals or day treatment centers. The move added $13 million in extra federal funding to the department's budget for the 2001 biennium, although mental health director Sharon Autio says it "was not made to focus on maximizing revenue but to improve the service delivery system."
Virginia has launched a "Community Reinvestment Project," designed to shift more than $11 million from state hospitals to the state's 40 community services boards. This is a significant turnaround for the commonwealth, which has never closed one of its 15 state hospitals, even though the number of inpatients has fallen from 8,000 to 3,600. As beds closed, the money financing them either stayed with the hospitals or left the mental health system entirely; the dollars never found their way to the community. "We are about 20 years behind in terms of the state mental health dollars that we put toward institutions versus the community," admits Mental Health Commissioner James Reinhard.
Initiatives to construct or find appropriate community-based housing for people with severe mental illness are moving forward elsewhere. In 2002, California voters approved a $2.1 billion housing bond, $190 million of which was set aside for the construction of new living space for the disabled, including people with mental illness. New York's legislature last year approved a $65 million appropriation to create 2,600 new adult beds, and another several thousand before 2010. Despite those moves, a class-action suit was brought against the state late last year alleging that it has unlawfully segregated residents of large adult homes.
Evidence-based practices
The growing application of six initiatives known as "evidence based practices" is one of the more encouraging trends in community mental health care. The initiatives represent a consensus among treatment professionals and researchers about the strategies that have proven effective in particular situations. They are becoming established in the mental health community as a solid template for policy makers to follow, with reasonable confidence that they're not wasting money.
Among the initiatives are supported employment and housing, and assertive community treatment, in which people with severe mental illness receive intensive treatment from a team of psychiatrists and psychologists, nurses and case managers in a community setting. Researchers at Dartmouth University have developed directions for implementing the practices, and the federal Substance Abuse and Mental Health Services Administration recently awarded nine states multi-year grants to expand their use.
States have jumped at the chance to use more consistently reliable practices. In fact, some are mandating that communities use the practices in exchange for funding. In Oregon, more than 25 percent of all mental health funds will be required to support evidence-based practices by the 2005-07 biennium; that figure will rise to 75 percent by the 2009-2011 budget.
Gathering Information
Another positive trend: With the help of data infrastructure grants from the Center for Mental Health Services, states have begun to develop outcome measures and build technology pieces to aid in reporting. The increased use of outcome and performance measures in contracts between states, counties and contractors should also improve data collection and reporting.
Texas has used data to illustrate the success of its "Texas Medication Algorithm Project," which started in 1996 Many people with mental illness in Texas had begun taking improved psychotropic drugs, but, in the words of Steven Shon, of the state's Department of Mental Health and Mental Retardation, "we kept hearing patients and family members saying their medications were changing all the time, which was more a reflection of the doctor than their illness."
In 1996, Shon and researchers at Texas Southwestern Medical School designed TMAP to standardize treatment for major depressive disorder, bi-polar disorder and schizophrenia. Physicians are asked not only to follow specified treatment patterns but also to standardize their patient charts, so that other doctors can better understand why certain treatment approaches are chosen. In addition, patients receive detailed information about the drugs, allowing them to better understand their treatment. Evaluations have found superior clinical outcomes for all three disorders under TMAP, and at least 12 other states have begun to apply the program to their own systems.
PROGNOSIS
Perhaps the most important document in mental health care in recent years was the final report of the President's New Freedom Commission, issued last July. The report sets six overarching goals for the public mental health system, with dozens of examples of system failures and accomplishments. The goals:- Americans understand that mental health is essential to overall health.
- Mental health care is consumer- and family-driven. --Disparities in mental health services are eliminated.
- Early mental health screening, assessment and referral to services are common practice.
- Excellent mental health care is delivered and research is accelerated.
- Technology is used to access mental health care and information.
One thing the report didn't include: a formula to achieve the goals. That's up to states and counties to create, and several states have appointed task forces to develop specific reforms based on the report's recommendations. Nevada's group has already met several times and is working toward a January 2005 deadline to provide its report to the governor and legislature.
However, implementing the recommendations in any tangible way will require overcoming considerable inertia. "We don't need to reinvent anything here," says Paul Appelbaum, of the University of Massachusetts. But maintaining the status quo is always easier, and finding time and energy to work new programs or partnerships into the fold--even if they're cost-free--is tough when employees are already taking on extra tasks because layoffs have left departments short- staffed.
There's widespread hope that the commission's report will spur changes, but the budget shortfalls continue to cast a dark cloud over what could be. Koyanagi acknowledges that getting the system moving takes more than will. It takes an infusion of resources, and she doubts the New Freedom Commission's recommendations will go far without more federal funds.
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