A near-failing grade for mental health system reflects beleaguered states

The nation's mental health system has been given a near-failing grade of D by the National Alliance on Mental Illness (NAMI) in its first state-by-state evaluation of the nation's mental health system in more than 15 years.

The 230-page report, "Grading the States: A Report on America's Health Care System for Serious Mental Illnesses," includes individual state narratives and scoring tables. It calls on states to make smarter investment choices through proven, cost-effective practices, and to link taxpayer funding to performance and individual outcomes. The report also includes a section on innovative state best practices that NAMI said should be replicated in other states.

"Grades are more than report cards," said NAMI executive director Michael Fitzpatrick. "They reflect standards that help people recover, and choices being made by governors and legislatures every day. States doing well in the report have developed a common vision and political will to move their treatment systems forward."

Grades were calculated by scoring 39 criteria, based in part on a survey of state mental health agencies conducted between October and December 2005. The state-by-state grade distribution was:

B: Connecticut, Ohio

B-: Maine, South Carolina, Wisconsin

C+: Maryland, Michigan, Minnesota, Oregon

C: California, District of Columbia, Hawaii, New Jersey, Rhode Island, Texas

C-: Delaware, Florida, Massachusetts, Missouri, New Mexico, Tennessee, Vermont

D+: Arizona, North Carolina, Pennsylvania

D: Alaska, Alabama, Georgia, Mississippi, Nebraska, New Hampshire, Oklahoma, Utah, Virginia, Washington, West Virginia, Wyoming

D-: Arkansas, Indiana, Louisiana, Nevada

F: Iowa, Idaho, Illinois, Kansas, Kentucky, Montana, North Dakota, South Dakota

U (unresponsive): Colorado, New York

The report confirmed earlier negative assessments of the nation's mental health system by President Bush's New Freedom Commission and the Bazelon Center for Mental Health Law.

The New Freedom Commission's July 22, 2003, final report said the nation's mental health system was beyond simple repair and recommended a wholesale transformation that involves consumers and providers, policy-makers at all levels of government, and both the public and private sectors.

"The time has long passed for yet another piecemeal approach to mental health reform," said commission chairman Michael Hogan, director of the Ohio Department of Mental Health. "For too many Americans with mental illnesses, mental health services and supports they need are disconnected and often inadequate. The commission has found that the time has come for a fundamental transformation of the nation's approach to mental health care."

The commission said the current system is unintentionally focused on managing the disabilities associated with mental illness rather than promoting recovery, and that this limited approach is due to fragmentation, gaps in care, and uneven quality. It called for a shift toward consumer and family-driven services.

"Consumers' needs and preferences, not bureaucratic requirements, must drive the services they receive," the commission declared.

A 2001 Bazelon Center report said almost everywhere "consumers and families are frustrated, providers are overwhelmed, and state mental health administrators are beleaguered. Policy-makers and taxpayers alike should be concerned because the result is both unnecessary human suffering and a waste of precious resources."

Bazelon said the situation exists "not because we lack information about what to do. It exists because, collectively, we have chosen not to do it." Its report called for elevating public mental health to a position of priority that more truly reflects the impact and the cost of mental illness.

"Failure to exercise the political will to do this will guarantee the continuing disintegration of state mental health systems, leaving more and more people with nowhere to turn," the report said.

The NAMI report indicates that little has changed in the years since the other groups called for reform.

"Treatment works, if you can get it, and if states get it right," said NAMI medical director Ken Duckworth. "Unfortunately, too many states are willing to risk or tolerate premature deaths."

He said that Ds are unacceptable grades and Cs should not be considered a passing grade.

"If you need heart surgery, you don't want a surgeon who only got a C in medical school," he explained. "The same principle applies in helping people with mental illness. Too many states are behind the curve. They are not keeping pace by moving toward a recovery-oriented health care system, based on proven, cost-effective practices. They are selling taxpayers short by settling for pieces of systems that are largely obsolete."

How well can people get info?

The NAMI survey included the "Consumer and Family Test Drive." Since access to services depends on access to information, NAMI had consumers and family members navigate the web sites and telephone systems of the state mental health agency in each state and rate their accessibility according to how easily one could obtain basic information.

To some degree, NAMI said, this exercise was like a "pop quiz." More than 80% of the states scored less than 50% of the total points. And in one case, an Illinois agency employee told a consumer, "No, I will not help you."

"Getting help means getting access to information," Mr. Duckworth said. "When 40 states can't pass a pop quiz on providing basic information to the people whom they are supposed to serve, then the system is in trouble."

States that received excellent Test Drive scores were Indiana, Michigan, Ohio, South Carolina, and Tennessee. Those receiving the lowest Test Drive scores were Alabama, Arkansas, Missouri, New Mexico, and South Dakota.

NAMI said high-quality state mental health systems are characterized by 10 elements:

1. Comprehensive services and supports, including affordable and supportive housing, access to medications, Assertive Community Treatment, Integrated Dual Diagnosis Treatment, illness management and recovery, family psychoeducation, supported employment, jail diversion, peer services and supports, and crisis intervention services.

2. Integrated systems.

3. Sufficient funding.

4. Consumer- and family-driven.

5. Safe and respectful treatment environments.

6. Accessible information for consumers and family members.

7. Access to acute and long-term care treatment.

8. Cultural competence.

9. Health promotion and mortality reduction.

10. Adequate and qualified mental health work force.

Mr. Fitzpatrick said he expected the report to have policy consequences. "Consumer and family advocates will use it as a tool for change," he suggested. "Governors and legislators should use it as a check list. The goal is to raise the level of awareness, dialogue, and creative action. Iowa is a prime example. It gets an F overall. Some 89 of its 90 counties are classified as rural, but the state lacks a strategy for addressing distinctive rural needs. Tell that to presidential contenders who plan on visiting the state."

He also called attention to New Hampshire, once considered to have one of the best mental health systems in the nation but in this report was one of 19 states to receive a grade of D.

The report was particularly critical of Illinois because it was the only large, populous state to receive a failing grade and also because it ranked 46th in the Consumer and Family Test Drive.

Report attracting attention

Mr. Fitzpatrick tells State Health Watch NAMI has been pleased with the media attention the report has received since its March release.

"We continue to see conversations," he says. "There have been a number of states where the media have made reference to the grades. That was our intent and one reason why we used the report card and grading format."

NAMI is developing new materials for the upcoming 2007 legislative sessions in states, he says, and hopes they will get more attention because of the attention paid to the report.

He suggested that even though the NAMI report mirrors language used by the New Freedom Commission, the U.S. Surgeon General, and the Institute of Medicine, it may be getting more attention and greater traction because of its report card format.

"It's easier for advocates to use," Mr. Fitzpatrick says. "And the state recommendations are personalized, not global. We tell states the things they are doing well and the things they need to work on."

Because the report is geared to affecting policy, NAMI made several policy recommendations as a result of its findings:

1. Increase funding tied to performance and outcomes. NAMI said that in recent years most states have reduced funding for services for people with serious mental illnesses or level-funded the programs. Impacts associated with those funding decisions, the report said, include overflowing emergency rooms with no place for people to go, increased numbers of people with serious mental illnesses in jails and prisons, and large numbers of people without access to desperately needed services. "State legislators and policy-makers must realize that cuts to vital services for people with serious mental illnesses raise rather than reduce overall costs to society," the report said. But NAMI said it recognizes and supports the importance of linking public sector mental health expenditures with positive outcomes and said states should be able to demonstrate that mental health services funded through Medicaid, the Federal Mental Health Services Block Grant, or state dollars achieve positive outcomes such as reduced symptoms, increased independence, employment, housing, and increased consumer satisfaction. And states should be able to demonstrate that their expenditures reduce negative outcomes such as hospitalizations, homelessness, criminal justice involvement, and suicides.

2. Invest in evidence-based and emerging best practices. NAMI said that while it has identified the elements of high-quality services for people with serious mental illness, its research for the report revealed that those services are in short supply or even nonexistent in many parts of the country. "If services with an established research base of demonstrated effectiveness are not translated into practice, the cynicism of policy-makers may be justified," the report said.

3. Improve data collection, reporting, and transparency of information. NAMI said it found very little data that would give advocates and consumers information about state mental health systems and how well they are performing. The data that exist are not designed to allow easy state comparisons and are not linked to consumer outcomes.

4. Involve consumers and families in all aspects of the system. NAMI said that although "lip service is given to the importance of consumer- and family-driven systems, we found very few examples where this important principle actually is being translated into practice. The examples we did find are exemplary and should be replicated in all states …. Unfortunately, on an overall basis, involvement of consumers and families in various aspects of the mental health system (planning, implementation, and evaluation) is token at best. Some states and systems apparently find it difficult to break away from outdated, paternalistic attitudes toward the people they are charged with serving."

5. Eliminate discrimination. NAMI said people with serious mental illnesses continue to encounter stigma and discrimination in all aspects of their lives. Overcoming such discrimination, it said, requires not only community education, but also the change of certain federal policies that reinforce the discrimination.

For example, it said, Congress continues to sanction discrimination against people with serious mental illness by failing to enact a federal law requiring that mental illness be covered on a par with all other medical disorders in health insurance policies.

And the Medicaid program contains a provision that encourages discrimination toward people with serious mental illness by prohibiting use of federal Medicaid dollars to pay for services in an "institution for mental disease." NAMI said the provision is a barrier to care in psychiatric hospitals but also to implementing Medicaid-reimbursable home- and community-based waivers of the kind that have been helpful in facilitating recovery among people with developmental disabilities and other Medicaid populations.

Finally, the Medicare program also discriminates against those with mental illness by covering 80% of the costs of outpatient treatment for traditional medical disorders but only 50% of the costs of outpatient psychiatric treatment.

Bazelon Center policy director Chris Koyanagi tells State Health Watch little has happened since she wrote the center's 2001 report and the New Freedom Commission issued its 2003 report.

"The biggest issue is getting mental health to be a higher priority so it can get the resources needed to do what needs to be done," she says.

Ms. Koyanagi says there has been some "intellectual progress" in terms of a consensus coming together on what to do.

"There's lots of rhetoric," she says, "but there is a widening gap between an appreciation for what works and its implementation. We either need to redirect existing money, which is very difficult to do, or get new money, which also is very difficult to do in this environment. Sitting here in Washington watching the federal government, it seems like we're going backwards."

A significant problem, according to Ms. Koyanagi, is that not all of the wasted money is in the mental health system. Rather it's in the courts and prisons and a number of different budgets and it's hard to get people to be able to cross organizational. Lines so they can access the money.

"Local people understand the situation best," she says. "But they often have state and federal regulations preventing them from doing what needs to be done to bring the money together."

Ohio Department of Mental Health director Michael Hogan, who chaired the New Freedom Commission, tells State Health Watch there have been mixed results in the three years between the commission's report and the NAMI report card. Mr. Hogan praises the federal effort to bring together many agencies that have some part to play with the mentally ill, but notes there haven't been sufficient resources for that collaboration to move into program improvements.

At the state and county level, he says, many people understand and support the notion of treatment for the severely mentally ill. But a lack of resources has again worked against programming improvements.

"So it's been a mixed bag at both the federal and local levels," he says.

Download the NAMI state-by-state report from www.nami.org. The New Freedom report is available online at www.mentalhealthcommission.gov. The Bazelon report is on-line at www.bazelon.org. Contact Mr. Fitzpatrick at (703) 516-7977, Ms. Koyanagi at (202) 467-5730, ext. 118, and Mr. Hogan at (614) 466-2337.