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APA is not alone in its pursuit of controls on managed care. An additional army of more than 300,000 members of three major advocacy organizations for the mentally ill is pressing for better care as well. These organizations especially stress access to care (including medications) and involvement of mental health professionals, patients, families, and advocates in policy planning. They are working in various ways to influence the regulation of managed care at the state and federal, public and private levels. Here's a summary of their current activities:
The NMHA is spearheading a variety of efforts to influence managed care while focusing on the goal of including patients and families in the planning and implementation of policy in state health care reform and managed care initiatives.
"Without the involvement of people with mental illness in the planning of public policy for managed care, they will get hurt," said Mike Faenza, president and chief executive officer of the NMHA.
The NMHA organized a health care reform team that provides training and consultation to clinicians, family members, and people with mental illness. The team helps create and develop coalitions of 40 to 50 people to advocate on behalf of adults and children with mental health treatment needs. There are currently two versions of the one-and-a-half day state health care reform training. Phase 1 is an introductory training to encourage various groups within a state, led by the state mental health association, to form advocacy coalitions that focus on the reforms in their states' Medicaid managed care program. Phase 2, which is designed for coalitions already in existence, focuses on contracting issues in Medicaid, children's issues, ombudsman programs, outcome measurements, formularies, long-term care, financial issues in Medicaid contracting, welfare reform, federal and state parity, and consumer rights. About 13 states have completed some training, including five that completed Phase 2, and many others are scheduled for fall sessions.
Advocates can receive further assistance and information from the NMHA's State Healthcare Reform Advocacy Resource Center. In addition to providing information and research, the center produces publications on training topics and puts advocates in touch with experts on specific topics.
The NMHA is lobbying for the following protections for mental illness in pending legislation. The organization had hoped to offer an amendment for all three issues but there is now little time in the legislative session for debate because of the Clinton-Lewinsky scandal, said Al Guida, vice president of government affairs.
The NMHA released two new documents in September. The "Standards for Consumercentric Managed Mental Health and Substance Abuse Programs" is intended to influence managed care contracts and improve quality monitoring. It will be sent to the Health Care Financing Administration, the 50 state Medicaid directors and 50 mental health department directors, large employers and health care purchasers, leading firms that manage behavioral health care, and the 340 NMHA affiliates. In addition, the NMHA has provided copies to the National Committee for Quality Assurance and the Joint Commission on the Accreditation of Healthcare Organizations.
The "Prevention and Managed Care Report" covers how to integrate prevention programs into managed care plans. It was mailed to all major stakeholders in September, and the NMHA is working with private and public sector purchasers and with business groups to convince employers of the importance of prevention.
Another NMHA project is the development of training sessions for parents on how to deal with their own managed care plans and how to influence managed care policy in general. The NMHA conducted two pilot workshops this year for groups of parents in Utah and West Virginia. Trainers informed parents about the basic issues of concern in managed care and Medicaid as well as the new state children's health insurance programs that the federal government is assisting in developing. The NMHA is working with the Federation of Families for Children's Mental Health to involve parents in the new insurance programs and hopes that those trained will go on to train others.
The NMHA is also working on new advocacy tools, training opportunities, and technical assistance efforts for its affiliates and advocacy partners in states and communities that will be introduced in late 1998 and early 1999. This fall it will release an advocacy tool kit that contains the information used in state health care reform training, including facts about private and public sector health issues and how managed care affects those, how to organize mental health stakeholders into unified coalitions, and how to work with and affect policymakers and the media. The tool kit contains examples and information on how to conduct town hall meetings, sample letters, press releases, and public service announcements.
Psychiatrists can participate in the NMHA's efforts in a couple ways, said Faenza. "We'd love to have psychiatrists working shoulder to shoulder with advocates and families" on training and implementing issues in Medicaid contracts and other reform issues, he said. At the national level, Faenza would like to see APA put its political capital into advocating for protections in public mental health systems as they go through the reform process.
"The more psychiatrists and important health care institutions and experts in mental health target public messages and concern about managed care toward people with mental illness, the better the results will be," he said.
NAMI continues to advocate for its "Principles for Managed Care" and for changes deemed necessary in "The NAMI Managed Care Report Card" of 1997.
The major issue that NAMI is addressing in the area of federal managed care legislation is to curb the use of restrictive formularies, said Andrew Sperling, director of Public Policy at NAMI. NAMI has written Sen. John Chafee (R-R.I.) in support of the bipartisan managed care consumer protection legislation developed by Chafee and Sen. Bob Graham (D-Fla) and Sen. Joseph Lieberman (D-Conn). NAMI supports protections against restrictive prescription drug formularies and involuntary disenrollment procedures.
NAMI is also lobbying members of the House Republican Task Force on Managed Care to include protections for access to psychiatric medications in the GOP Managed Care Consumer Bill of Rights. NAMI wrote members of Congress about its objections to the rules of restrictive formularies and the need for prior authorization, "must fail" policies, downward generic substitution (some managed care plans require a new enrollee to move down from a newer first-line medication to an older generic alternative, even if the newer medication has already proven effective in controlling symptoms), and strict budgets for physicians (a dollar cap on the costs of medications that an individual physician can prescribe to all of their patients enrolled in the health plan).
A third area of access to care for which NAMI is lobbying is for managed care plans to spell out that suicide attempts qualify as medical emergencies. Under many managed care plans, said Sperling, suicidal ideation is currently not considered a medical emergency; many people who are suicidal and go to hospital emergency rooms are sent home despite needing inpatient care, said Sperling.
At the state level NAMI advocates are involved on mental health policy planning councils required by the Center for Mental Health Services. NAMI provides information and organizes conferences for health policy discussion where states can share ideas and knowledge.
NAMI is also working on local levels to promote consumer and family participation in policymaking on advisory committees, working with Medicaid agencies, and developing waivers in managed care companies.
NAMI chapters work in communities to build community supports for providing housing, employment, training in community living, outreach, and case management for people with severe mental illness. In September NAMI released a manual called The PACT Model of Community-Based Treatment for Persons With Severe and Persistent Mental Illness. The Program of Assertive Community Treatment (PACT) is a model for providing comprehensive community-based treatment to the most costly and difficult to serve among the populations of persons with severe and persistent mental illnesses. PACT can be used by managed care companies as well as mental health administrators, team leaders, and clinicians. The PACT model is a treatment team of multidisciplinary mental health professionals who provide treatment, rehabilitation, and support services.
Psychiatrists are needed for advocacy on all the issues related to managed care and to influence policymaking, said NAMI staff members. They are an essential part of the PACT teams, and many more are needed to work in community psychiatry.
National Depressive and Manic-Depressive Association (NDMDA)
The NDMDA's primary efforts to influence managed care policy are focused on influencing federal legislation. The organization sent letters to sponsors of patient protection bills outlining the needs and concerns of people with mental illness. The NDMDA urges Congress to "craft legislation that sets minimum standards for managed care and protects patients' ability to access needed health care services, especially for those suffering from mental illnesses. . . ."
The NDMDA's goals for managed care are to see that it does not discriminate against individuals with mental illnesses by limiting benefits; allows direct access to specialists who are specifically trained in the diagnosis and treatment of mental illnesses such as depression and manic depression; allows physicians to prescribe new medications that may be more effective despite increased cost; and provides reimbursement for individuals who participate in clinical trials.
The national office conducts workshops at its annual meetings for individuals interested in federal lobbying.
Lydia Lewis, executive director of the NDMDA, would like to see wellness programs consisting of newsletters and educational programs in managed care such as those developed for patients with diabetes, hypertension, and other physical illness. The wellness effort should also include support for participation in self-help groups, said Lewis.
Psychiatrists, patients, and advocates have to fight together for access to care, said Lewis. "We all have to keep up the fight though it is time consuming and exhausting. We haven't gotten the message across that it is cheaper to treat this illness than to ignore it."
Here are the Web site addresses for these organizations: NMHA: www.nmha.org; NAMI: www.nami.org; DBSA: www.DBSAlliance.org.