MHA State Advocacy Efforts Move Beyond Budget Issues

States have seen the legislative landscape shift this year as budget surpluses turned to deficits. Many mental health advocates are now playing defensive roles, protecting scarce mental health resources and access to treatment and services. This is a striking contrast to state legislative activity in previous years, which often focused on leveraging state budget surpluses for unmet mental health needs.

But state policy activity this year has not been entirely budget-focused. Across the country, Mental Health Associations are addressing key issues such as access to psychotropic medications, mental health and substance abuse parity, involuntary outpatient commitment and Olmstead planning.

NMHA is now holding focus groups with state advocates to determine the resources they need to protect and expand access to community-based services and treatment. This fall, NMHA will provide advocates with targeted assistance and materials based on the focus group outcomes. Technical assistance is currently available to advocates on budget issues, including cost-offset information, Medicaid data and state options, formulary restrictions, guidance on the state appropriations process, and strategic consultation on specific state issues.

Access to Psychotropic Medications
Budgetary concerns have led several states to reduce access to needed medications through formulary restrictions. By restricting access, states hope to lower costs in their Medicaid pharmaceutical line items. Research clearly indicates, however, that such efforts not only jeopardize consumer health but also fail to reduce costs because expenses for hospitalization, community mental health services, and emergency care increase when prescribers and consumers are unable to choose appropriate treatments.

This year has seen much legislative activity on formularies. In Florida, the legislature enacted a new closed formulary that limits access to needed medications and places limits on the number of medications that can be received by individuals in the Medicaid program. For years, a broad-based coalition of advocates from MHAs and many disability groups in this state opposed these restrictions. Through their efforts, medications for mental health and HIV/AIDS were exempted from new restrictions. Similar exemptions were also made to new formulary restrictions being considered in Oregon this year.

In response to proposed Medicaid restrictions in Indiana, the MHA of Indiana successfully pushed for legislation that prohibited Medicaid from enacting restrictions on access to medications. Although the bill passed in the legislature, Governor Frank O'Bannon vetoed it. The governor, however, has subsequently contacted advocates to develop compromise legislation, acknowledging that stakeholders will continue to seek legislative protections against formulary restrictions in the Medicaid program.

Restrictions on access to medications have been enacted this year in Louisiana and are being considered in legislatures and Medicaid offices across the country. To address these trends in New York, advocates there earlier this year invited NMHA to conduct a training on the benefits of open access to assist their lobbying efforts in the state legislature. The MHA of New York is building on this event by developing similar regional trainings across the state.

To support advocacy in this area, NMHA has developed multiple resources, including Pennywise Pound Foolish: Restricting Access to Psychotropic Medications, an advocacy guide available for a minimal cost. NMHA is also developing a new document that outlines legislative language that has been proposed or enacted in states to maintain open access to medications or mediate restrictive bills when they are enacted. To order these materials, call 800-969-NMHA (6642) and select option 6.

Mental Health and Substance Abuse Parity
NMHA is advocating for federal and state governments to enact parity protections requiring all health plans to ensure that coverage for mental health and substance abuse care is on par with medical and surgical benefits. Thirty-four states have enacted laws to prevent insurance companies from discriminating against mental health in benefit plans. In 2001, 70 bills related to coverage for mental health and/or substance abuse have been introduced in 24 states. Many states that currently have parity laws are revisiting them to expand mental health coverage or to add provisions related to substance abuse.

In Arkansas, a law was enacted this year to provide parity benefits under the state's children's health insurance program. Indiana and Arizona also secured parity this year for substance abuse disorders within both states' employee health plans. In Colorado, a law has been enacted amending the state's parity law to require that insurance carriers use a preauthorization or utilization review mechanism that is no more restrictive than that used for physical illness. Delaware has expanded its current parity law to include substance abuse treatment. Rhode Island has also expanded its parity law to cover all mental disorders under the current version of the Diagnostics and Statistical Manual of Mental Disorders, including substance abuse disorders.

Illinois has passed a limited parity law, and both Mississippi and Kansas passed minimum mandated benefit laws for mental health disorders this year. Legislation to expand existing parity provisions in Texas to include children passed both chambers, but was stalled before the legislation could be enacted. Meanwhile, Congress continues to debate federal legislation that would enact broad-based parity protections for the entire country.

Involuntary Outpatient Commitment (IOC)
Some mental health groups are working at the state level to enact IOC laws that expand the number of people who can be forced into mental health treatment in a community setting. Although NMHA recognizes that involuntary treatment may sometimes be necessary in an inpatient setting when individuals are a danger to themselves or others, it does not support the use of IOC, in general. NMHA views IOC as a simplistic solution to a complex problem caused mainly by insufficient resources for community-based services. As the U.S. Surgeon General said, "The need for coercion should be reduced significantly when adequate services are readily accessible to individuals with severe mental illness who pose a threat of danger to themselves or others."

Laws to expand IOC have been enacted in 2001 in Washington, Nevada, Iowa, West Virginia and Montana, and bills have been considered in 13 states. In addition, Mississippi passed a conservatorship law. At the same time, advocates in other states such as California and Maryland have already successfully fought off attempts to enact or expand IOC laws and worked to keep the state's focus on increased resources for voluntary services.

In addition, Maryland passed psychiatric advance directives legislation this year. NMHA supports the use of advance directives and believes they can be a way for mental health consumers to plan for their care in the event of a psychiatric crisis. For more information on IOC and advance directives, please call the Advocacy Resource Center at 800-979-NMHA (6642) and select option 6.

Olmstead Planning
Two years have passed since the U.S. Supreme Court decision in the landmark Olmstead case, which requires states to provide community services to people with disabilities. And it has been 11 years since the passage of the Americans with Disabilities Act (ADA).  Nevertheless, most states are still in the midst of determining how they will implement the mandate to provide community-based services for people with disabilities.

Thirty-seven states have formed task forces to facilitate this planning process, and four states (Missouri, North Carolina, Ohio and Texas) have issued final plans that appear to meet recommendations established by the Center for Medicare and Medicaid Services (formerly known as the Health Care Financing Administration).

Although many advocates are frustrated by the slowness of the process, stakeholder groups continue to pressure states to develop inclusive plans that address the specific needs of each disability group. Through consultation with experts in the field, NMHA has developed the following recommendations for Olmstead planning:

• Establish an inclusive planning process with subgroups, including advocates from each disability group, that address the needs of people with specific disabilities.
• Expand resources to meet demand for community-based services.
• Enact legislation or establish executive orders that make Olmstead plans enforceable.
• Focus on specific state institutions and populations to help identify opportunities for community placements.
• Address nursing home placements as well as traditional state institutions.
• Take advantage of opportunities presented by Olmstead planning to address the mental health needs of homeless people and those in jails and prisons or at risk of incarceration.

MHAs and other advocates continue to work on a broad scope of issues connected to state and local budgets as well as a host of system reforms, including school-based mental health services, systems of care for children and funding for community-based services. For more information, supportive studies, or strategic consultation in these and other areas, contact NMHA at 800-969-NMHA (6642) or at shcrinfo@nmha.org. Visit our Web site at http://www.nmha.org.

Patients' Rights Legislation Alone Is Not a Panacea

Consumers Need Mental Health Parity
Recent congressional debates on patients' rights legislation underscore the importance of health insurance and health security to Americans. Yet for people with mental illness, having health insurance — even with the protections that the Senate-passed patients' rights bill would provide — does not necessarily ensure access to needed treatment or protection against financial catastrophe. The reason? Most health insurance policies provide much more limited benefits for mental health care than for treatment of other health problems. 

As mental health advocates know all too well, health insurance policies routinely limit the duration of mental health treatment, and often impose strict limits unrelated to medical need. Many health insurance policies also impose extraordinary cost-sharing requirements that are not required for medical or surgical problems, which means many people lack the resources to get any treatment. These arbitrary limitations and additional financial burdens are unfair.

The adoption of patients' rights legislation, important as it is, will not remedy most health insurance practices that discriminate against people with mental illness, and will leave millions of families vulnerable. The Senate-passed Bipartisan Patient Protection Act would require health insurers to live up to their contract obligations and protect consumers' rights, but it won't make discriminatory coverage of mental illness illegal. In addition, the weaker House-passed patient rights bill also permits discriminatory mental healthcare coverage. Stamping out discriminatory barriers to mental health insurance coverage will require Congress to enact specific legislation requiring parity between mental health coverage and coverage for medical and surgical care. The Mental Health Equitable Treatment Act of 2001, S. 543, would provide that remedy.

The fight for mental health parity is important not only for people with health insurance. It has precedent-setting value for future battles on a broad range of issues. Parity is fundamentally a civil rights issue, so achieving this goal is a key to further progress on other social justice issues.

S. 543, introduced by Sens. Pete Domenici, R-N.M., and Paul Wellstone, D-Minn., would for the first time prohibit a group health plan from imposing treatment limitations or financial requirements on mental health coverage unless comparable limits are imposed on medical and surgical benefits. The bill would also close gaps in the Mental Health Parity Act of 1996, which was a first step toward achieving mental health parity. The expiration of the 1996 parity law on September 30 makes it critical that a strong parity bill win congressional approval in the coming month.

On July 11, the Senate Health, Education, Labor and Pensions (HELP) Committee, under chairman Sen. Ted Kennedy, D-Mass., held a long-anticipated hearing on mental health parity to support favorable action on mental health parity legislation. Domenici testified that the Congressional Budget Office (CBO) has determined that enactment of S. 543 would result in only a 1 percent increase in insurance premiums, proving that mental health parity is affordable. This analysis and assessment by the CBO should aptly address concerns regarding the cost-impact of enacting mental health parity. The Committee also heard testimony from the Office of Personnel Management (OPM) regarding its early experience with mental health and substance abuse parity under the Federal Employee Health Benefit Program. OPM's testimony supported the CBO's conclusion that parity could be successfully implemented with only limited additional cost.

Perhaps consumer Lisa Cohen provided the most compelling testimony. Her story was brought to NMHA's attention by the MHA of Southeastern Pennsylvania. Lisa compared the benefits and treatments she currently receives through her insurance provider for two life-threatening conditions: a blood disorder and bipolar disorder. In her experience, the insurance company had no problem covering the majority of the costs to treat her blood disorder, yet severely limited her mental health benefits, forcing Lisa, with the help of family, to pay for her treatment out-of-pocket.

Fifty-four senators representing both parties and the Senate's lone independent signaled their support for parity by cosponsoring S. 543. Although the Senate HELP Committee unanimously approved an amended version of the bill recently, advocates have more work to do. Grassroots efforts are vital to our success. We need to persuade uncommitted Senators to cosponsor this bill. We must also win more support among members of the House of Representatives for a similar House bill, H.R. 162. To do so, we must put a human face on the issue of mental health parity, which can help focus the debate on the tragic consequences of denying parity and the compelling need to enact this bill.

With your help, we can do that. We anticipate that this bill will soon come up for floor debate in the Senate. Senators who will lead the fight for parity in this debate have urged us to provide them with personal stories. Please send us letters or other materials that provide personal accounts of consumers who have private health insurance coverage but whose care was cut short because of arbitrary treatment limits, unreasonable costs or discriminatory cost-sharing burdens. Please send those personal stories to the attention of Allyson Kenyon, NMHA Government Affairs Department at akenyon@ nmha.org or National Mental Health Association 2001 N. Beauregard Street, 12th Floor Alexandria, VA 22311.

Healthcare Reform Advocacy Trainings Continue

Spring/Summer Update

NMHA continues to offer advocacy trainings in conjunction with state and local affiliates geared to the specific needs and priorities of state mental health coalitions. Successful trainings conducted this spring and summer include:

Maryland — The MHA of Maryland brought together state advocates in May to strategically respond to Involuntary Outpatient Commitment (IOC) legislative initiatives slated for the 2002 legislative session. Historically, advocates in Maryland have easily defeated IOC legislation; however, recent support for IOC has forced advocates to be more proactive.

Arizona — The MHA of Arizona met with a host of state advocates in May to address systems of care for children, with a particular focus on access to medication for children and adolescents as a component of care. Participants developed an action plan to highlight disparities in children's mental health care and outlined specific efforts to enhance resources in the state. This plan is projected over a 12-month time line.   

Delaware — In an effort to call attention to the needs of consumers of mental health and substance abuse services, the MHA of Delaware met in May with a wide range of  local coalition members to develop strategies for better coordinating systems that serve individuals with co-occurring disorders. Participants also met with state officials to discuss mental health and substance abuse program development within the justice system.

Georgia — The NMHA of Georgia hosted a meeting of mental health coalition members to analyze the state's existing mental health agency. Participants identified the most effective measures to enhance the resources and delivery of mental health services throughout the state.

Vermont — Stakeholders met with the MHA of Vermont to look at ways in which the state can better coordinate a system of services for children, adolescents and young adults. Training participants analyzed the state's existing systems of care for children and adolescents, and developed strategies for expanding the scope of mental health services to include youth between the ages of 18 and 22. In particular, participants examined the needs of youth in transition to adult mental health systems.

If you anticipate problems regarding legislation or regulatory policy, or if you need to create or expand a mental health coalition, please feel free to contact us for assistance. We are ready to help.

For more information, contact Dave Nelson at 703-797-2594 or dnelson@nmha.org, or Terri Odom at 703-838-7554 or todom@nmha.org.

Correction:

An update in the previous issue of SAU on the MHA in Louisiana's activities was incorrect. The correct report follows:

During a February Healthcare Reform Training, the MHA of Louisiana worked with state advocates on a Medicaid Buy-In initiative. Legislation to adopt a Medicaid Buy-In program was not introduced, but the legislature passed a resolution to conduct a feasibility study to identify the infrastructure needs for the current service system and apply for federal funding to enhance the infrastructure of the Department of Health and Hospitals.

Lobbying Guide Offers Tips and Tools

For Promoting Change

NMHA has released a new advocacy primer designed to help advocates effect mental health policy changes. The new booklet, Influencing Your State Legislature, outlines the basics of how to lobby members of state legislatures to transform behavioral health policy goals into state law and to prevent harmful legislation from becoming law. The primer includes four case studies detailing successful advocacy efforts by Mental Health Associations, and provides samples of legislative alerts, testimony and letters to the editor. Influencing Your State Legislature is available for $5.00 by calling 800-969-NMHA (6642).

Technical Assistance Resource Center Grows to Support Diverse Audience

 Given its recent growth and increased capacity to handle requests, NMHA's Advocacy Resource Center is quickly becoming the leading source for healthcare reform information and assistance in the mental health field. The Center now serves a wide network of advocates who seek NMHA assistance for public policy information, resources, research and consultation. Developed in 1998 to enhance the efforts of the Healthcare Reform Advocacy Training and  Technical Assistance Program supporting local advocates, the Center's audience now also includes family members, consumers, state legislators, providers, mental health professionals, the media, managed care organizations, and local and national agencies.

Last year, the Advocacy Resource Center responded to 1,947 requests for technical assistance. The Center has fulfilled more than 4,000 requests since its inception.

Scope of Technical Assistance

The Center fills technical assistance requests on a broad variety of topics. On any given day, the Center's callers may request information on state-specific information related to health insurance parity, statistics on per capita spending on mental health or the adverse effects of restrictive drug formularies. Although some requests take only a short time to fulfill, others require extensive research that can take days to complete.

Of the 1,947 requests for research, consultation and resources the Center fulfilled last year, a vast majority — 1,739 — are from outside NMHA. The Center also distributed publications to more than 4,000 individuals and groups last year.

External requests in 2000 for technical assistance came from a variety of sources (external requests are those received from MHAs, consumers, clinicians, state officials, or other organizations or individuals not employed by NMHA). Most of these requests originated from advocates interested in strengthening their advocacy efforts. Other groups contacting the Center included state and national government agencies in search of information on specific mental health and policy issues.

The Center is expected to respond to more than 3,500 requests in 2001 alone.

Pre-Training Research and Ongoing Technical Assistance

The Center provides ongoing technical assistance to advocates that participate in the Healthcare Reform Advocacy Training Program. This program conducts more than 20 trainings per year in states across the country. Assistance includes both pretraining research and follow-up technical assistance. Pretraining research consists of compiling information on the state's mental health system and challenges and providing information specific to the topics covered during the training. The follow-up assistance provides advocates with many tools to achieve the goals outlined in the action plans created at the trainings.

For more information about NMHA’s Advocacy Resource Center, call 800-969-NMHA (6642) and choose option 6.

New Online Resource for Substance Abuse/Addiction Information

NMHA has expanded its Web site (http://www.nmha.org) to include a new substance abuse prevention and treatment section that includes research-based data, Internet links to substance abuse information, and a new NMHA publication on substance abuse treatment disparities for women of color.

The publication, "Meeting the Challenge: Ending Treatment Disparities for Women of Color," is a call to action for all community leaders, substance abuse/addiction stakeholders and treatment providers. It offers information to help them work across systems, races and cultures to develop pathways for women of color to access services that reflect—and respond to—their needs and experiences.

NMHA developed the document as part of the Targeted Technical Assistance Project of the National Association of State Mental Health Program Directors and the Division of State and Community Systems Development of the Center for Mental Health Services, Substance Abuse and Mental Health Services Administration.

New Online Resource for Substance Abuse/Addiction Information

NMHA has expanded its Web site (http://www.nmha.org) to include a new substance abuse prevention and treatment section that includes research-based data, Internet links to substance abuse information, and a new NMHA publication on substance abuse treatment disparities for women of color.

The publication, "Meeting the Challenge: Ending Treatment Disparities for Women of Color," is a call to action for all community leaders, substance abuse/addiction stakeholders and treatment providers. It offers information to help them work across systems, races and cultures to develop pathways for women of color to access services that reflect—and respond to—their needs and experiences.

NMHA developed the document as part of the Targeted Technical Assistance Project of the National Association of State Mental Health Program Directors and the Division of State and Community Systems Development of the Center for Mental Health Services, Substance Abuse and Mental Health Services Administration.

Some Medicaid Facts

When planning state advocacy strategies, make sure to build and maintain relationships with your state Medicaid office. Medicaid has become a major payer for public mental health services.

Did You Know . . .?

• Services provided under Medicaid account for more than half of all public mental health services provided at the state and local levels.
• There are no state or federal requirements for Medicaid agencies to produce statistics on mental health services and spending.
• According to a February 2001 Medicaid letter, states must respond within 24 hours to prescription requests for the new atypical antipsychotic medications.
• Medicaid requires that states develop a yearly mental health plan if they provide mental health services, but this requirement is not enforced.

What Is a Home- and Community-Based Waiver?

As states work to implement the Olmstead decision, they may seek to use Medicaid to fund integrated home- and community-based services. States can apply for Medicaid waivers to fund such alternative services. States should note, though, that federal law prohibits funding for services in Institutions for Mental Diseases (IMDs) for people between the ages of 22 and 64. (IMDs are residential facilities with more than 16 beds that primarily serve people with mental health or substance abuse disorders.) States can, however, apply for the Home- and Community-Based Waiver for:

• Children under age 21
• Adults over age 64 in certain states
• Any adults who live in nursing homes that are not primarily IMDs

For more information about planning state advocacy strategies related to Medicaid, call the NMHA Advocacy Resource Center at 800-969-NMHA (6642) and select option 6.

Healthcare Reform Resources

NMHA is committed to providing mental health advocates and stakeholders with quality information that helps them promote positive policy changes in states and communities. Below is a list of resources MHAs can use to help support their advocacy efforts. Most of these materials are available on the Internet. If you have problems accessing any of the following items online, contact the Advocacy Resource Center at 800-969-NMHA (6642) and select option 6, or e-mail shcrinfo@nmha.org.

State Health Care and Health Policy Data Online

From the Kaiser Family Foundation — “State Health Facts Online,” available at http://www.statehealthfact.kff.org.

Work Incentives

From the Social Security Administration — "State Chart of Work Incentives Activities," available at http://www.ssa.gov/work/Beneficiaries/activity2.html.

Medicaid

Department of Health and Human Services — "CMS Delays Effective Date of Medicaid Managed Care Rule," available at http://www.access.gpo.gov/su_docs/fedreg/a010618c.html.

From the General Accounting Office — "Health Centers and Rural Clinics: Payments Likely to Be Constrained Under Medicaid's New System," available at www.gao.gov/cgi-bin/getrpt?gao-01-577.

Children's Health

From the Annie E. Casey Foundation — "Kids Count Data Book Online," available at http://www.aecf.org/kidscount/kc2001.

Pharmaceutical Assistance

From the National Governors' Association — "Center Releases Report on State Pharmaceutical Assistance Programs," available at http://www.nga.org/center/divisions/1,1188,C_ISSUE_ BRIEF^D_2013,00.html.