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A Report onAmericas

Health Care

System for Adults

with Serious

Mental Illness

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2009

the States


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GRADIN

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GRADINGthe State

A Report on

AmericasHealth Care

System for Adults

with Serious

Mental Illness

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Grading the States: A Report on Americas Health Care System for Adults with Serious

Mental Illness, published March 2009.

Copyright 2009 by National Alliance on Mental Illness. All rights reserved.

Suggested Citation: L. Aron, R. Honberg, K. Duckworth et al. (2009) Grading the

States 2009: A Report on Americas Health Care System for Adults with Serious MentalIllness,Arlington, VA: National Alliance on Mental Illness.

NAMI is the National Alliance on Mental Illness, the nations largest grassroots

mental health organization dedicated to improving the lives of individuals and

families affected by mental illness. NAMI has over 1,100 affiliates in communities

across the country who engage in advocacy, research, support, and education.

Members of NAMI are families, friends and people living with mental illnesses

such as major depression, schizophrenia, bipolar disorder, obsessive-compulsivedisorder (OCD), panic disorder, post-traumatic stress disorder (PTSD), and

borderline personality disorder.

National Alliance on Mental Illness

2107 Wilson Boulevard, Suite 300


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Letter from NAMI Executive Director

Executive Summary

Authors

Acknowledgements

C H A P T E R O N E

A Vision for Transforming StatePublic Mental Health Systems

C H A P T E R T W O

Measuring the Performance of State Systems

C H A P T E R T H R E E

The State of Public Mental Health

C O N T E


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Mental illness causes more disability than any other class of illnation. One in four Americans experience mental illness at sin their lives; twice as many of us live with schizophrenia than live with

Yet in 2003, the presidential New Freedom Commission on Mental Health

the service system responsible for helping those with mental illnesses was f

and in shambles. In America today, the people who must rely on this systtually being oppressed by it, and many years of bad policy decisions have

gency rooms, the criminal justice system, and families to shoulder the bu

sponding to people in crisis.

In 2006, NAMI published the first Grading the States: A Report on Ameri

Care System for Serious Mental Illness. This is our second report, building on

line of the first. It measures each states progressor lack of progress in ma

in providing evidence-based, cost-effective, recovery-oriented services for

ing with serious mental illnesses.Grading the States promotes transparency and accountability in mea

progress toward transformation of the nations system of care, as envisio

New Freedom Commission. In our first report, the nations grade was a D.

earned a B and eight states flunked outright. In this second report, three y

NAMI documents marginal progress across the country, but not enough to

nation from a D grade. Fourteen states increased their overall score ove

three years. For almost half the states (23), their grade remains unchan

2006, while 12 states have fallen behind. Although none of the states achie

dard of excellence, NAMI might have been able to herald their progress

first step forward, except for a major dark shadow on the ground.

America today faces the greatest economic crisis since the Great Depressi

every state, county, and local government is facing large deficits and cutting p

ices across the board. State Medicaid programs are being squeezed. The budg

mental health agencies are being slashed. We know from experience that stat

spond to fiscal crises by reducing mental health budgets. As a result, the stastate system may already be falling below the levels documented in this repo

The challenge to our leaders across America today is to find the vision

ical will, and the funding to hold the line; to allow state mental health care

continue to move forward and build momentum for change. For NAM

means mental health care systems that are accessible, flexible, and promot

L E T T E R F R O M N A M I E X E C U T I V E D I R E C


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Crisis creates opportunities. Publication of this report coincides with the inaugu-

ration of a new President who sees health care reform as part of the nations broader

economic challenge. Of course, mental health is part of health care. Indeed, this re-

port highlights the need to better integrate mental health care with physical health

care and wellness. Health care reform is therefore an important opportunity to

strengthen the federal governments support of state and local mental health care sys-

tems, through improvements to the Medicaid program and key policy changes.

Together, at every level, we must advance, not retreat.

As we move toward publication, a temporary infusion of greater federal funding

for Medicaid seems likely as part of the nations economic recovery plan. Federal sup-

port for building the mental health care workforce would address this systems staffingcrisis while simultaneously responding to unemployment rates that threaten to reach

10 percent or more. Our hope is that this report will stimulate creative ideas like these

that can have a direct impact on multiple fronts.

NAMI thanks all of the state mental health authorities that responded to the

Grading the States survey. Their willingness to have an independent third party assess

their work in close detail is particularly commendable. It is worth noting that many

consumer and family comments included in the report praised the caring dedication

of people who work within state systemseven as they condemned the lack of ade-quate resources and system failures.

NAMI thanks the Stanley Family Foundation for funding the report and Dr. E.

Fuller Torrey, whose vision produced state ratings reports in 1986, 1988, and 1990.

Without their support, this report would not have been possible.

Above all, NAMI thanks all those individuals and families who live with serious

mental illnesses who lent their voices to this report and support our work. On their

behalf, let us all seek together a new mental health care system, marked by hope, op-

portunity, and recovery.

Michael J. FitzpatrickExecutive Director

National Alliance on Mental Illness

GRADING THE STATES 2009viii


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Our national mental health care system is in crisis. Long fragile, frand inadequate, it is now in serious peril. In 2003, the presidFreedom Commission presented a vision for a life-saving, recovery-oriente

fective, evidence-based system of care. States have been working to impro

tem, but progress is minimal.

Today, even those states that have worked the hardest stand to see wiped out. As the country faces the deepest economic crisis since

Depression, state budget shortfalls mean budget cuts to mental health serv

The budget cuts are coming at a time when mental health services are

urgently needed. It is a vicious cycle that destroys lives and creates more

financial troubles for states and the federal government in the long run.

One in four Americans experience mental illness at some point in thei

most serious conditions affect 10.6 million people. Mental illness is the gre

of disability in the nation, and twice as many Americans live with schizophwith HIV/AIDS.

We know what works to save lives and help people recover. In the fac

America needs to move forward, not retreat. We cannot leave our most

citizens behind.

The Grades

In 2006, NAMI published Grading the States: A Report on Americas Mental H

System for Serious Mental Illness, to provide a baseline for measuring progr

the transformation envisioned by the New Freedom Commission. In 200

tional average was a D grade.

Three years later, this second report finds the national average to be s

again a D. Fourteen states have improved their grades since 2006, but not

raise the national average. Twelve states have fallen back. Twenty-three s

stayed the same.Oklahoma improved the most, rising from a D to a B; South Carolina

thest, from a B to a D.

Overall, the grade distribution for 2009 is:

Six Bs

E X E C U T I V E S U M M


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The grades are based on 65 specific criteria. Each state received grades in four

categories, which then comprise the overall grade.

State mental health agencies were the primary source of information for the re-

port, responding to a NAMI survey in August 2008. Other data were drawn from ac-

ademic researchers, health care associations, and federal agencies.

NAMI conducted a nationwide Web-based survey, which drew over 13,000 re-

sponses from consumers and family members. The results were not used in the grad-

ing process, but helped inform the report. Some consumer and family comments from

the survey accompany state narratives in Chapter 5. NAMI volunteers also conducted

a Consumer and Family Test Drive of state mental health agency Web sites and tele-

phone resources to measure the ease (or difficulty) of access to informationwhichis the first challenge in finding help when it is needed.

The Information Gap

This report presents 10 characteristics of a life-saving, cost-effective, evidence-based

mental health care system, and discusses specific programs. A critical concern is the

need for greater data to help drive decision-making.An information gap exists in measuring the performance of the mental health care

system. To some degree, states are groping blindly in the dark while seeking to move

forward.

The fault begins at the federal level, where the U.S. Department of Health and

Human Services (HHS) Substance Abuse & Mental Health Services Administration

(SAMHSA) has failed to provide adequate leadership in developing uniform standards

for collecting state, county, and local data.

This report provides the nations most comprehensive, comparative assessmentof state mental health care systems to date. But more information on performance and

outcomes is needed.

Key Findings

Many states are valiantly trying to improve systems and promote recovery, despite a

stranglehold of rising demand and inadequate resources. Many states are adoptingbetter policies and plans, promoting evidence-based practices, and encouraging more

peer-run and peer-delivered services. But state improvements are neither deep nor

widespread across the nation. This reports findings follow the four categories in

which each state was graded:

GRADING THE STATES 2009x


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Most states have inadequate plans for developing and maintaining the

health workforce.

Financing and Core Treatment/Recovery Services

State mental health financing decisions are often penny-wise, pound-

States are not adequately providing services that are the lynchpins of

hensive system of care, such as Assertive Community Treatment, inte

mental health and substance abuse treatment, and hospital based care

needed.

States are not ensuring that their service delivery is culturally compet

Consumer and Family Empowerment

Information from state mental health agencies is not readily accessible

States are not creating a culture of respect.

Consumers and family members do not have sufficient opportunities

monitor the performance of mental health systems.

Community Integration and Social Inclusion

Few states are developing plans or investing the resources to address

housing needs for people with serious mental illnesses.

Effective diversion from the criminal justice system is more common

mains scattershot without state-level leadership.

Most states are beginning to provide public education on mental illne

stigma remains a major concern.

Policy Recommendations

To transform our nations mental health care system, the federal governm

nors, and state legislators must take action in five key areas. This report offe

recommendations in each area. Chapter 4 highlights states that are currentling some of these critical steps.

1. Increase Public Funding for Mental Health Care Services

Institute modest tax increases

EXECUTIVE S


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Report on evidence-based practices

Track wait times in emergency rooms

3. Integrate Mental and Physical Health Care

Expand pilot programs that link physical and mental hea

Co-locate primary care physicians and psychiatrists in cli

Cover preventive care in private and public health insura

Increase use of health and wellness programs

4. Promote Recovery and Respect

Employ peer specialists

Fund peer-run services

Fund peer-education programs

Provide culturally and linguistically competent services

Invest resources in reducing human rights violations

Increase employment opportunities

Increase housing opportunities

5. Increase Services for People with Serious MentaMost at Risk

Eliminate the Institutions for Mental Diseases (IMD) exclu

Implement a coherent response on non-adherence to trea

counseling, psychiatric advance directives, treatment gua

sisted outpatient treatment.

Adopt incentives to increase the qualified mental health w

In Conclusion

Todays economic crisis presents a daunting challenge for all

public officials who, NAMI recognizes, must make hard chogently needed.

We need leadership, political will, and investment from g

and other champions to preserveand build onthe modes

to improve public mental health care. We need to rise above ex

need to save lives and help people to recover.

GRADING THE STATES 2009xii

National and State

Grades Comparison

between 2006 and 2009

2006 2009

USA D D

Alabama D D

Alaska D D

Arizona D C

Arkansas D F

California C C

Colorado CConnecticut B B

DC C C

Delaware C D

Florida C D

Georgia D D

Hawaii C C

Idaho F D

Illinois F D

Indiana D D

Iowa F D

Kansas F D

Kentucky F F

Louisiana D D

Maine B B

Maryland C B

Massachusetts C B

Michigan C D

Minnesota C C

Mississippi D F Missouri C C

Montana F D

Nebraska D D

Nevada D D

New Hampshire D C

New Jersey C C

New Mexico C C

New York B

North Carolina D D

North Dakota F DOhio B C

Oklahoma D B

Oregon C C

Pennsylvania D C

Rhode Island C C

South Carolina B D


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Grading the States 2009 was written and produced by the following memb

NAMI National staff:

LAUDANARON, M.A.Director of Senior Policy Research

RON HONBERG, J.D.

Director of Policy and Legal Affairs

KEN DUCKWORTH, M.D.Medical Director

ANGELA KIMBALLDirector of State Policy

ELIZABETH EDGAR, M.S.S.W.Senior Policy Analyst

BOB CAROLLA, J.D.Director of Media Relations

KIMBERLY MELTZER, M.P.P.Policy Research Associate

LAURA USHER, M.S.CIT Resource Center Coordinator

KATRINA GAYDirector of Communications

MARY GILIBERTI, J.D.(formerly) Director of Public Policy and Advocacy1

MARIAJOS CARRASCO, M.P.A.Director, Multicultural Action Center

ANAND PANDYA, M.D.President, Board of Directors

MICHAEL FITZPATRICK, M.S.W.Executive Director

A U T H


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Grading the States: 2009 would not have been possible withoutand foresight of Theodore, Vada, and Jonathan Stanley, whovided NAMI with valuable guidance and generous support through the Stan

Foundation.

We are very grateful to those state mental health commissioners, and

who responded to the NAMI survey with candor and insight, and providedsupporting information on their state systems of care. Their dedication an

ment to helping people living with mental illnesses is truly inspiring, particu

increasingly challenging budgetary and bureaucratic circumstances.

We would also like to thank the many NAMI leaders across the countr

vided background information and conducted fact-checking on the conditi

lic mental health services in their states. Their insights and perspectives hav

every aspect of this report.

For their time and efforts in providing additional data used in this thank Charles E. Holzer, III of the University of Texas Medical Branch in

Texas and his colleague, Hoang T. Nguyen of LifeStat LLC; Joseph P.

Thomas R. Konrad, Kathleen C. Thomas, and Alan R. Ellis, all of the Cec

Center for Health Services Research at the University of North Carolina at C

and Diana Culbertson, Senior Information Specialist at the American

Association.

Michael Cohen of NAMI New Hampshire designed and executed the

and Family Test Drive portion of the report. A group of local volunteers,

Robin Alvanos, Liz Biron, Ken Braiterman, Diane Cyr, Liane Henry, Sarah

Deb Karr, Lisa Mercado, Bodie Morey, Diana Teixeira, Tina Larochelle, Pet

David Sawyer, and Tom Smith, made this test drive possible.

The following members of NAMI Nationals Board of Directors and

ported this project in many different ways: Board Members Sheila Amd

Carter, Carol Caruso, Suzanne Finneran Clifford, Guyla Daley, Stephen

Fred Frese, Clarence Jordan, H. Richard Lamb, David J. Lushbaugh, Joseph Keris Jn Myrick, Marty Raaymakers, Clarice Raichel, and Kevin Sullivan

members Christine Armstrong, Jeny Beausol ei l, Loren Booda, Lynn Bor

Bradley, John Bradley (Consultant on Veterans Affairs), Lorener Braybo

Brick, Joyce Burland, Chuck Carroll, Brandie Childs, Danya Haywood, Sco

Arlene Krohmal, Don Lamm, Jim McNulty, Sarah OBrien, Bianca Ruf

A C K N O W L E D G E M E


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this survey; and to Ben Cichocki, Laysha Ostrow, Kimberly Warsett, Clifton M.

Chow, and H. Stephen Leff, all of the Evaluation Center of the Human Services

Research Institute (HSRI), who generously assisted us in compiling the Web-based

data.

We thank photographer Michael Nye and his assistant Mark Menjivar for the

beautiful and compelling portraits of people with mental illnesses. Nyes images are a

powerful reminder that this report is first and foremost about peoplenot numbers

and percentages, or plans and policies.

For invaluable assistance with the drafting and production of this report, we

thank independent consultants Wendy Jacobson (writing/editing), Juan Thomassie

(charts and map design), Kelly Douglas and Deborah Feldman (copy editors), andChris Phillips (designer) of Circle Graphics, Inc.

Finally, while the findings and opinions expressed in this report belong only to

NAMI, we thank the many individuals we consulted at various points in the process

of developing Grading the States 2009. They have been extraordinarily generous in

sharing their expertise, insights, opinions, and cautions as NAMI undertook this am-

bitious project:

MARGARITAALEGRADirector, Center for Multicultural Mental Health Research and Professor ofPsychology, Department of Psychiatry at Harvard Medical School

JEFFREYA. BUCKChief, Survey, Analysis, and Financing, Center for Mental Health Services, SubstanceAbuse and Mental Health Services Administration

PEGGYA. CLARKTechnical Director, Center for Medicaid andState Operations, Centers for Medicare

and Medicaid Services

ROSANNA ESPOSITOInterim Executive Director, Treatment Advocacy Center

LAURIE FLYNNDirector, Carmel Hill Center, Department of Psychiatry, Columbia University

MICHAEL HOGANCommissioner of Mental Health, New York Office of Mental Health

MICHAELA. HOGESenior Science and Policy Advisor, Annapolis Coalition on the Behavioral HealthWorkforce, Inc., and Professor of Psychiatry, Yale School of Medicine

MAREASA R. ISAACSExecutive Director, National Alliance of Multi-Ethnic Behavioral Health Associations

GRADING THE STATES 2009xvi


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BARBARAJ. MAUERManaging Consultant, MCPP Healthcare Consulting

SUKRITI

MITTAL

Resident in Psychiatry, SUNY Downstate Medical Center

JOHN MORRISExecutive Director, Annapolis Coalition on the Behavioral Health Workforce, Inc.;Director, Human Services Practice, Technical Assistance Collaborative, Inc.

NAVIN NATARAGANResident in Psychiatry, SUNY Downstate Medical Center

ANN OHARAAssociate Director, Technical Assistance Collaborative, Inc.

RICHA PATHAKResident in Psychiatry, SUNY Downstate Medical Center

HARVEY ROSENTHALExecutive Director, New York Association of Psychiatric Rehabilitation Services

TAMMY SELTZERProgressive Policy Solutions

DANIEL TIMMELMedicaid Policy Analyst, Disabled and Elderly Health Programs Group, Centers forMedicare and Medicaid Services

E. FULLERTORREYExecutive Director, Stanley Medical Research Institute

RICKYBARRAProgram Officer, Hogg Foundation for Mental Health

ALAN M. ZASLAVSKYProfessor of Health Care Policy, Department of Health Care Policy, Harvard MedicalSchool

ACKNOWLED


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I

n 2003, the presidential New Freedom Commission described me

care in the United States as a system in shambles, in need of fun

transformation.1 Three years later, in another major report, the National A

Sciences Institute of Medicine (IOM) proposed a major overhaul of our

health care system, calling it untimely, inefficient, inequitable, and at time

These findings built on the U.S. Surgeon Generals landmark 1999 Repor

Health.3Yet despite these repeated calls for reform, the prospects for peop

rious mental illnesses in this country remain bleak.4

A Vision forTransforming State

Public Mental

Health Systems

C H A P T E R O N E

1 New Freedom Commission on Mental Health, Achieving the Promise: Transforming Mental HAmerica: Final Report (Rockville, MD: DHHS Publication No. SMA-03-3832, 2003). http://www.mentalhealthcommission.gov/. These findings echo earlier assessments of the nmental health system including the work of Dorothea Dix in the 1800s, Albert Deutsch in thE. Fuller Torrey in the 1980s and 1990s.2 National Academy of Sciences Institute of Medicine (IOM), Improving the Quality of Health Cand Substance-Use Conditions: Quality Chasm Series, Committee on Crossing the Quality Chasm:

M l H l h d Addi i Di d (W hi DC Th N i l A d i P 2006


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The nation can sit idly no longer. It is time to break

down the barriers in government that have led to the

abandonment of people with serious mental illness; and

to undo years of bad policies that have increased the bur-

dens on emergency rooms, the criminal justice system,

families, and others who have been left to respond to peo-

ple in crisis. We must invest adequate resources in men-

tal health services that work and finally end the pervasive

fragmentation in Americas system of care.

A transformed mental health system would be com-

prehensive, built on solid scientific evidence, focused onwellness and recovery, and centered around people liv-

ing with mental illnesses and their families. It would be

inclusive, reaching underserved areas and neglected com-

munities, and fully integrated into the nations broader

health care system.

A transformed system will require new attitudes and

new investment. To reach this goal, we need vision and

political willon Capitol Hill, in state legislatures, and incommunities across America. The good news: we know

now what is necessary to create the mental health care

system we want to see. Building on NAMIs2006 Grading

the States report, this 2009 edition identifies the pillars of

a high-quality system, provides an unvarnished assess-

ment of where we arestate-by-state and as a nation

and identifies specific recommendations to guide the field

towards the vision.

10 Pillars of a High-Quality StateMental Health System

As a nation, and as a mental health community, our

knowledge base about mental illness is uneven. Weknow far less than we should about the causes and

courses of mental illnesses. On the other hand, we know

a lot about the staggering consequencesfor the indi-

vidual, for families, and for societyof untreated men-

tal illness. We know that we provide treatments and

system has the following very sp

It is:

1. Comprehensive;

2. Integrated;

3. Adequately funded;

4. Focused on wellness and re

5. Safe and respectful;

6. Accessible;

7. Culturally competent;

8. Consumer-centered and codriven;

9. Well-staffed and trained; an

10. Transparent and accountab

These are the 10 pillars of

health system. Following is a br

onewhy it is critical and where th

tailed, state-by-state analysis can bThe sections below also provide so

pursue to begin addressing the ch

1. Providing Compreheand Supports

Today, having a serious mental i

mean a lifetime of suffering or depe

people living with mental illness

often describe themselves as bein

ing they are, or are working toward

in a community of their choice, w

their full potential.5 For many, th

right services and supports are in report, we include direct quotes ab

ple living with serious mental illn

members.

GRADING THE STATES 20092

5 Th d f d l d N


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Every mental health system must have carefully bal-

anced and adequate levels of care. The service continuum

includes state hospitals, short-term acute inpatient and

intermediate care facilities, crisis services, outpatient and

community-based services, and independent living op-

tions. The exact mix and intensity of necessary services

will vary from one person to another, and even for the

same person, over time. A truly comprehensive mental

health system must offer, regardless of ability to pay, serv-

ices such as:

Access to prescribers and medications;

Acute and long-term care treatment;

Affordable and supportive housing;

Assertive Community Treatment (ACT);

Consumer education and illness self-management;

Crisis intervention and stabilization services;

Family education;

Integrated treatment of co-occurring disorders;Jail diversion;

Peer services and supports; and

Supported employment.

This list is not exhaustive. A comprehensive system

would also include screening, assessment, and diagno-

sis; a wide range of diagnostic-specific therapies (e.g.,

Dialectical Behavior Therapy for borderline personalitydisorder); case management; psychosocial rehabilita-

tion; certified clubhouses; drop-in centers; supported

education, and many other critical services

ports. The list will grow and change as new sc

idence identifies emerging, promising, and

tices. Brief descriptions of the service compon

above are found in a textbox towards the e

chapter.

Services Should Be Evidence-Based

State mental health systems and other state age

ensure that the services and supports they delfective. Treatments and approaches with prove

ness are growing and must be made availabl

community that needs them, replacing outdat

effective alternatives (see textbox on Bridgin

and Practice).

More research must be

conducted so that promising

practices and treatments canbe developed for sub-groups

of people that lack well-estab-

lished, effective approaches.

As the lead federal agency for transformation

that have flowed from the New Freedom Co

the Substance Abuse and Mental Health

Administration (SAMHSA) has played an imp

in disseminating national guidelines and imtion resource kits for proven evidence-based

(EBPs) such as ACT, supported employment

A VISION FOR TRANSFORMING STATE PUBLIC MENTAL HEALTH S

Bridging Research and Practice

Many non-profit organizations and government agencies are helping

disseminate up-to-date information about evidence-based practices(i.e., those that have been proven to consistently produce specific,

intended results). These include:

The federal Agency for Healthcare Research and Quality (AHRQ):

http://www.ahrq.gov/clinic/epcindex.htm#psychiatry

The Cochrane Collaboration: http://www

The National Guideline Clearinghouse. Dand treatment guidelines can be found a

The Substance Abuse and Mental Health

(SAMHSA). Evidence-Based Practices Im

http://ebp.networkofcare.org; Evidence-B

Implementation Resource Kits: http://me

Recover

mental illife inste


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grated dual diagnosis treatment (IDDT). SAMHSA has

also awarded Transformation State Incentive Grants

(TSIGs) to nine states to accelerate improvements in

their mental health infrastructure (e.g., inter-agency col-

laboration, technology use, and workforce develop-

ment).6 Together, these are meaningful first steps, but

much more is needed.

Finding the Right Balance

Establishing the right balance o

means avoiding shortages on eitheof care. When a full spectrum of com

is not available, people languish in

pital beds, jails, and nursing homes

come overcrowded. As one comme

The key to all this is a balanceinpatient slots and a robust servicesa balance many sta

ble striking, especially as they


Non-Adherence to Treatment

6 In October 2005, grants were awarded to Connecticut, Maryland, NewMexico, Ohio, Oklahoma, Texas, and Washington. In October 2006, twoadditional awards were made to Hawaii and Missouri. See http://mentalhealth.samhsa.gov/cmhs/CommunitySupport/mentalhealth/ default.asp.

It is not uncommon for people with serious mental illnesses to dis-

continue their own treatment, in particular, their use of prescribed

medications. There are a number of reasons for this:

They have a neurological syndrome called Anosognosia that

leaves them unaware that they are ill. As many as 50 percent of

people with schizophrenia are affected by this condition,7 and it

is the most significant reason why people with illnesses charac-

terized by psychosis refuse treatment;

Their medications have uncomfortable or even debilitating side

effects;

They experience little or inadequate symptom relief; They perceive stigma about having a mental illness; and/or

They have had negative experiences in the mental health sys-

tem, ranging from indifference and disrespect to abusive and in-

humane treatment.

What Are The Consequences?

The consequences of discontinuing treatment can be devastating,

including unnecessary hospitalizations, homelessness, criminal jus-

tice involvement, victimization, and suicide.8

What Can Be Done?

Because of the very real potential for harmful or tragic conse-

quences, mental health systems should have a range of strategies

in place to help people with serious mental illn

prescribed treatment.

Assertive Community Treatment (ACT) An e

reach-oriented, service delivery model using a

nary clinical team approach, ACT provides com

alized community treatment (including substa

housing, and employment support) and is pa

helping people who are most at risk of falling

the mental health system.

Peer Support People who live with mental illnfective in assisting or encouraging their peers to

Programs emphasizing self-help and mutual

prominence in public mental health systems,

dence suggests they should be studied further

Motivational Approaches Borrowing from th

tional approaches used to treat addictions, m

techniques are emerging. For example, the LEA

Agree-Partner) method has been shown to buflict, and lead to positive outcomes over time.

Respectful Treatment Environments Environ

ple are treated with respect and dignity are imp


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the community services that might keep people

out of inpatient bedsall the while cutting thenumber of those beds.11

Another important consideration and challenge is that

many people with serious mental illnesses do not seek

treatment or follow through with treatment plans. The con-

sequences of this can be devastating, from unnecessary

hospitalizations or homelessness, to criminal justice in-

volvement, victimization, and even suicide. A number ofstrategies designed to respond to these challenges are used

in many states, including: ACT, targeted peer supports,

specific motivational techniques, psychiatric advance di-

rectives (PADs), and Assisted Outpatient Treatment

ing comprehensive services and supports. Fro

state, service structures, and administrative andarrangements will be different. The age co

race/ethnicity, and poverty level of the popu

will have a major impact on how services are se

implemented. In the end, each state must fin

recipe for success.

2. Integrating Multiple System

Mental health services and supports typically

ered by a wide range of providers working wit

funding streams and a variety of rules and re


Non-Adherence to Treatment (continued)

which then promotes adherence to treatment. When positive, re-spectful attitudes are conveyed by everyone from receptionists to

treatment professionals, an individuals experience of treatment is

greatly improved.

Psychiatric Advance Directives (PADs) PADs are legal agreements

through which people with mental illnesses can state treatment pref-

erences and/or authorize others to act on their behalf if they cannot

make informed decisions concerning treatment of their mental ill-

ness. Twenty-five states have laws authorizing PADs; in others, PADs

may be part of living wills or general healthcare advance directives.

Conservatorships and Guardianships All states have laws author-

izing courts to appoint an individual to make treatment decisions for

another individual who has been determined to lack capacity (i.e.,

competence) to make those decisions. These legal tools for substi-

tute decision-making are time limited and last only as long as the

person remains incompetent.

Assisted Outpatient Treatment (AOT), or Involuntary Outpatient

Commitment Assisted outpatient treatment laws authorize courts

to order certain individuals to participate in community treatment.

There are strong differences of opinion among mental health advo-

cates and others about AOT. Proponents asslife-saving, while opponents argue that it is

individual rights. NAMIs position is that

should strongly emphasize strategies that p

ipation, and use involuntary treatment as a

Forty-two states have laws authorizing A

use it, a few use it with regularity includin

Carolina, and Wisconsin. Legal criteria forrowly defined in virtually all states, court ord

individuals have the right to free legal repre

timony and witnesses on their own behalf,

periodically reviewed, among other rights.

Studies suggest that AOT can produce

implemented properly. For example, it mus

with sufficient and proven community-base

AOT is not a solution for the inadequac

health system. If effective and humane co

services were more widely available, involun

be less necessary. However, experiences in

gest it is one tool that, when used judiciou

difference.



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Funding streams that are blended (or braided) and

can be easily accessed by a range of programs;13

Close collaboration among the full range of in-

volved agencies (e.g., housing, Medicaid, addic-tions, criminal justice, vocational rehabilitation,

education);

Seamless transitions, especially along frequently-

traveled paths such as from inpatient to outpatient

care, or from homeless shelters or prisons back into

the community;

Accessibility (i.e., services that are user-friendlyespecially for those who may have limited physical

capacities); and

Administrative and programmatic requirements

that are well-aligned and designed with cross-

agency coordination and integration in mind.

No single state agency has complete control over all

mental health services. However, because state mentalhealth agencies have fundamental responsibility for or-

ganizing and delivering mental health care, they must as-

sume primary responsibility for coordinating with other

agencies, even those over which they have limited control

(e.g., criminal justice, housing, employment, education,

and workforce development). It is especially vital that

state mental health agencies coordinate with Medicaid,

given its large and growing importance in financing men-tal health services.14

3. Providing Adequate Funding

Financesboth available dollars and the sources of fund-

ingdrive service delivery and program design. Effective

mental health services, like other types of health services,

require resources and a high-qual

therefore cannot be achieved with

Analyses of public funding ha

ure to fund mental health servicesignificantly greater funding being

tems, such as child welfare, jails a

gency rooms, to address the cons

mental illness.

Since few states put enough m

mental health systems to ensure se

mostof the people who need theroutinely make decisions to preser

for fewer people or serve greater

fewer or less intensive services. Pu

tems are also challenged because

countercyclicalthe need for s

rises during economic downturns

Funding for public mental

from Medicaid and other sources general funds. Each plays an impo

and delivery of services

THE ROLE OF MEDICAID

Medicaid, which provides funds for every state dollar spmental health services than a

private source. Medicaid covservices for (among others) lowuals who meet strict federal dia result, Medicaid is an imporerage for many who live with nesses. In states that have exeligibility, more people with mlikely covered.

As a significant payer of s

has played a substantial role mental health systems.15 For edollars may not be used to paychiatric treatment for people acilities that primarily serve indtal illnesses. This Medicaid exd i h d d i

13 Funding streams are blended when money from multiple sources ispooled together to pay for a given provider or service. A newer devel-opment is braided funding, in which each stream is kept separate for

i d i b h bi d f



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portant community-based mental health services(such as case management, ACT, psychiatric re-habilitation, peer supports, etc.), Medicaid-reim-

bursable services vary greatly from state to statedepending on what services states choose to havecovered by their plans. Because of differences inavailable services and other program elements,people who rely on Medicaid for service coveragecan have very different experiences depending onthe state in which they live.

Unfortunately, current Medicaid require-ments and burdensome processes can make it

difficult for states to bill and get adequately re-imbursed for effective services, such as ACT andpeer supports. The U.S. Department of Healthand Human Services could help promote recov-ery for people with mental illness by expeditingthe Medicaid reimbursement process for all di-rect and ancillary costs of evidence-based andemerging best practices in state Medicaid plans.Given Medicaids prominent role in funding

services, mental health leaders should advocatefor a well-designed Medicaid plan with policiesand services that benefit persons living with se-rious mental illnesses.

THE ROLE OF NON-MEDICAIDMENTAL HEALTH FUNDING

Non-Medicaid mental health funding, such asstate and local general funds, plays a vital role in

public mental health systems, as it pays for moststate hospital care and provides a critical com-munity safety net for persons in crisis or in needof other care. These funds are used to serve per-sons with serious mental illnesses who are notinsured, who have exhausted private coverage,or who are not eligible or are awaiting eligibilityfor Medicaid.

Because the Medicaid program is limited in

scope, non-Medicaid dollars provide importantservices and supports that are either reimbursedinadequately by Medicaid or not reimbursed atall. Non-Medicaid dollars, when adequate, offerthe flexibility needed for comprehensive sup-ports and, importantly, enable the developmentf d h ll b

ioral health industry noted:

A statement of values, a strategic plan, re

on evidence-based practices, and even rtory efforts are critical, but they cannotcome the reality that what is paid for iswill be provided. Frequently, what is pawell or easily, or with a high reimburserate, will have more influence on which seare provided and in what manner they arvided than the professional standards non-financial actions of system leader

stakeholders.16

Much of the cost of care for persons living

ous mental illnesses is shifted onto public syst

private coverage is exhausted and when the p

tor fails to provide equitable, timely, and effect

health treatment.

To minimize such cost shifts and promote

tervention, state laws should ensure equal cov

ity) of mental health and substance use disor

public and private health plans.17 States shou

sure important patient protections such as req

equate numbers of specialty providers, assur

and appropriate access to care, and covering

based interventions for serious mental illnesse

4. Focusing on Wellnessand Recovery

Mental and physical wellness are strongly link

have documented that individuals with serious

nesses have a higher risk of medical problems

abetes, hypertension, and heart disease, and dyounger (on average) than their counterparts i

eral population.18


16 American College of Mental Health AdministratioWorkgroup, Financing Results and Value in Behavioral He


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6. Providing Accessible Services

The onset and diagnosis of a mental illness is, at a mini-

mum, unsettling; more often, it is very traumatic. It is ex-tremely important that consumers and their family mem-

bers have quick and easy access to current and accurate

information about mental illnesses, options for further

evaluation and diagnosis, treatment alternatives, and

local resources and supports.

State mental health agencies play a critical role in en-

suring this information is available, both electronically

and through other sources. Through the Internet, infor-mation should be searchable on all state mental health

agency websites, and must quickly and easily connect in-

dividuals and families to mental health services in their

communities. Since not all Americans have access to on-

line information, mental health information must also be

made available in primary health care settings, over the

telephone, in schools, libraries, and through faith-based

and other community-based organizations. Multiple

forms of access are especially important for traditionally

underserved groups and for people living in rural and

frontier communities.

7. Establishing Cultural Competence

As the Surgeon General said in the 2001 supplemental re-

port Mental Health: Culture, Race, and Ethnicity, culture

beliefs, norms, values, and languageplay a key role in

how people think about and experience mental illness,

whether they seek help, the quality of the services they re-

ceive, and the kinds of treatments that may work best for

them. This report, as well as the New Freedom

Commission and IOM reports referenced earlier, all havedocumented that people from minority racial and ethnic

communities have less access to mental health services,

are less likely to receive these services, and often receive

a poorer quality of care once in treatment.20

that providing culturally competent care is a

way to reduce disparities in treatment and

Thus, mental health systems must provide c

sensitive and responsive to cul-tural differences. This means

being aware of the impact of

culture and having the skills to

respond to a persons unique

cultural circumstances, includ-

ing his/her race and ethnicity,

national origin, ancestry, reli-gion, age, gender, sexual orien-

tation, physical disabilities, or

specific family or community

values and customs.

A number of state mental health systems

great strides in increasing their cultural co

using evidence-based practices to bring cultu

ness to their workforce training, service delivematerials, and other resources.

8. Building Consumer-Centereand Consumer- andFamily-Driven Systems

Historically, people with serious mental illn

had little input into the services they receive.

their families views often have been discoun

though family members are often the primary

Negative experiences with the treatment sy

mately undermine trust and participation in tr

mental health system that is truly consumer-ce

consumer- and family-driven requires the meavolvement of individuals and families in the d

plementation, and evaluation of all services.

needs and preferences should also drive the typ

of services selected in individualized plans of c


In the w

health, r

mean ge

illness bu

in the wohaving o



30/204

other treatment settings, and policy committees with real

decision-making authority. A more equal partnership be-

tween people with mental illnesses and their family mem-

bers, mental health administrators, and service providersis the goal.

Additional steps states should take to build con-

sumer-centered mental health systems include: adopting

high standards for certifying peer support specialists; pro-

moting opportunities for individuals to get certified; and

ensuring that peer support specialists are paid well and

can be reimbursed through state Medicaid plans.

Increasing the number and variety of high-quality con-

sumer-run services also will help empower consumers

and their families.

9. Fielding an Adequate and QualifiedMental Health Workforce

Across the country there is a critical shortage of qualified

mental health personnelfrom psychiatrists and nurses,

to social workers and other direct service providers.

Recruitment, diversity, retention, training, education,

and performance are all falling short of what is needed.

As the Annapolis Coalition reported in its 2007 Action

Plan for Behavioral Health Workforce Development:

It is difficult to overstate the magnitude of theworkforce crisis in behavioral health. The vastmajority of resources dedicated to helping indi-viduals with mental health and substance useproblems are human resources, estimated atover 80 percent of all expenditures. [] there issubstantial and alarming evidence that the cur-rent workforce lacks adequate support to func-tion effectively and is largely unable to delivercare of proven effectiveness in partnership withthe people who need services. There is equallycompelling evidence of an anemic pipeline ofnew recruits to meet the complex behavioralhealth needs of the growing and increasingly di-

ply of qualified mental health p

health agencies must work with ot

universities and colleges, state and

ment boards, state labor agencies)

Establishing education subsid

ness programs for students pu

mental health;

Promoting and providing trai

necessary for working with pe

ous mental illnesses;

Providing on-going education

service professionals and para

Developing competitive salary

for employees working in men

Finally, people living with me

families are de facto members of th

force, providing an enormous amsupport, and care for loved ones. I

unique capacity to educate the fo

mental health workforce about th

treatment, and recovery. Strengthe

sumers and families to assume car

roles is therefore critical, and ca

providing them with education a

in self-management techniques; agating systems of care, among oth

10. Ensuring TransparePublic Accountabi

A transformed mental health syste

parent and accountable to the peo

public at large. It therefore must b

alyze, publicly report on, and imp

it delivers.

It is also critical that these m

0



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sensus on and implementing a common, continuously

improving set of mental health and substance-use health

care quality measures for providers, organizations, and

systems of care (IOM, 2006, p. 14).The IOM goes on to recommend that these measures

be analyzed and displayed in formats understandable by

multiple audiences, including consumers, those report-

ing the measures, purchasers, and quality oversight or-

ganizations (IOM, 2006, pp.14-15). The IOM also rec-

ommends that measures:

[] include a set of mental health/substanceuse vital signs: a brief set of indicatorsmeasurable at the patient level and suitable forscreening and early identification of problemsand illnesses and for repeated administrationduring and following treatmentto monitorsymptoms and functional status. The indica-tors should be accompanied by a specifiedstandardized approach for routine collectionand reporting as part of regular health care.Instruments should be age- and culture-appro-priate. (p.15)

The development of standardized, valid, and reli-

able person-level outcome measures to assess treatment

results is critical to tracking performance and quality

improvement in state public mental health systems.

Ideally, measures such as these will become availableand serve as the foundation of future editions ofGrading

the States.

New Challenges Ahead

In NAMIs view, these 10 elements are the pillars of a

transformed state public mental health system. The broad

values they represent work in different settings and will

remain relevant over time. As we look ahead, we also see

new challenges on the horizon:

and community-based mental health services

can only begin to predict.23

Emerging Populations in Need

As wars in Iraq and Afghanistan continue,

numbers of veterans, including members of th

Guard, are returning with seri-

ous mental illnesses that re-

quire substantial assistance for

them and their families as they

transition back home. This

emerging population of mental

health consumers will chal-

lenge state mental health sys-

tems in new and unpredictable

ways.

Also, as states and communities make rea

increase their cultural competence, new populcontinue to enter the mental health system (ra

minorities, non-English speaking individua

with hearing impairments, people living in

frontier areas, etc.). States must be prepared t

needs of all these groups.

Technological DevelopmentsInnovative technologies such as telemedicine

health records, computer-based clinical decisio

systems, and computerized provider order e

tronic prescribing systems) have the potentia

improve access to high-quality mental health s

The mental health care system must be full

as a National Health Information Infrastructu

begins to take form. From the earliest stages o

initiative, the interests of mental health consu

be recognized. For example, consumers spe

around data and privacy standards and electro

records must be taken into account; and comm

Recover

able to m

to the po

know Im

unless I



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Comprehensive Services and Supports

Access to Prescribers and MedicationsMedicationsand someone to prescribe themare an essential part

of successful treatment. According to the National Institute of Mental

Health, individual patients need more, not fewer, choices.

Unfortunately, in an attempt to control prescription drug costs, many

state Medicaid programs have adopted policies that limit access to

psychiatric medications, especially newer second-generation or

atypical antipsychotics. These policies include requiring prior au-

thorization, requiring or encouraging the use of generic medications,

imposing higher co-pays, limiting the monthly number of prescrip-

tions covered, requiring that enrollees fail on one medication before

another is prescribed (fail-first policies), and developing a pre-

ferred drug list (PDL) to promote the use of less expensive drugs. All

of these can lead to poorer health outcomes (including death), in-

creased emergency room visits, hospital care, and institutionaliza-

tion. In a high-quality mental health system, decisions about med-

ications are based on an individuals needs and preferences and the

best available clinical judgment.

Acute and Long-Term Care Treatment

While advances in mental health treatments (and the provision

of comprehensive community-based supports) may reduce the num-

ber and length of inpatient hospitalizations for many people with se-

rious mental illnesses, it is clear that there will always be a need for

these inpatient services. Acute care beds, group homes, and other

24-hour residential programs for people who require continuous care

on a long-term basis must be available at sufficient levels.

Yet, across the country, there are significant shortages. States seek-

ing to reduce costs by closing, consolidating, or reducing state hospi-

tal services are simply shifting the burden to other systems. Neither

nursing homes nor unlicensed and unregulated board and care homes

are effective or appropriate treatment options. Instead, states must

provide innovative, high-quality and accessible inpatient options, in-

cluding quality state hospital settings.

Affordable and Supportive Housing

Many people with serious mental illness have limited incomes and

need access to decent and affordable housing. Some also need

supportive housing, which combines affordable housing with sup-

port services such as job training, life skills trainabuse programs, and case management. The

ing and support works well for people with ser

whose housing is at risk and who have very l

supportive housing, many will end up in (and of

higher-cost and less appropriate settings like

tal health facilities, and homeless shelters.

Assertive Community Treatment (ACT)

The most studied and widely used intervention

ous mental illnesses who require multiple serv

sive supports is known as Assertive Communit

evidence-based, outreach-oriented, service de

24-hours-a-day/seven-days-a-week multi-disc

approach, ACT provides comprehensive, indiv

treatment (including substance abuse treatme

ployment support) to individuals in their home

community. ACT teams consist of a psychiatrisfessionals, psychiatric nurses, peer specialists

ists, substance abuse specialists, and adminis

Consumer Education and Illness Self-Man

Illness management and recovery programs e

their diagnoses and treatment options so they

decisions and manage their illnesses more e

grams teach strategies for minimizing symptom

and using medication effectively. They also cbuilding social supports, setting and achieving

getting needs met in the mental health system

Crisis Intervention and Stabilization Servic

The mental health care system must be able to

crisis in a timely and compassionate way. In m

forcement personnel take on this role, often wi

By contrast, in high-quality mental health systion and stabilization services are available aro

include telephone crisis hotlines, suicide ho

warm-lines, crisis counseling, crisis outreach

care, crisis residential treatment services, and



33/204

cially trained to deal with mental health emergencies in safe and ap-propriate ways, such as through the CIT (Crisis Intervention Team)

program.

Family Education

Family education programs are designed to educate family members

about the mental illness of a loved one, and help them work effec-

tively with that family member, as well as with any professionals who

are involved, to prevent relapse and promote recovery. Through re-

lationship building, education, collaboration, problem solving, and

an atmosphere of hope and cooperation, family education helps

families and supporters learn new ways of managing mental illness,

reduce tension and stress within the family, and support and encour-

age each other.

Integrated Treatment of Co-occurring Disorders

Research shows that integrated approaches to treating people with

co-occurring mental illness and substance abuse disorders producebetter outcomes. The best known approach is integrated dual diag-

nosis treatment (IDDT), an evidence-based program that provides

treatment for both illnesses at the same time and in one setting.

Many states and communities understand that co-occurring disor-

ders should be the expectation, not the exception.

Jail Diversion

One of the most visible and tragic indicators of how poorly our men-

tal health care system is performing is the number of people with se-

rious mental illnesses in our nations jails and prisons. Many are

there for misdemeanors or minor non-violent felonies, yet their men-

tal illness may end up prolonging their stay. Jail diversion programs

(as well as mental health courts and reentry programs) bring to-

gether the criminal justice and mental health systems to decrease

the incarceration of people with mental illnesses. By l inking people

with mental illnesses with appropriate services both prior to, and fol-

lowing, an arrest, these programs short-circment and criminal court processes. They ha

cluding improving public safety, reducing

ment and corrections, and facilitating posi

for individuals.

Peer Services and Peer-Run Services

People living with serious mental illnesses a

tant part of the mental health workforce. T

health professionals on teams that provide d

in ACT or certified clubhouses) and work o

istration of many programs. They may also

ership positions. Peer-run programs, whic

tonomous programs controlled by, and

health consumers themselves, are gaining in

grams can serve many purposes in a com

advocacy or community education efforts;

employment assistance programs, or recreaable; providing crisis prevention or respi

homeless outreach or housing work; and o

management, companionship, counseling,

Supported Employment

Supported employment is an evidence-b

ing people living with serious mental illnes

petitive employment. It encourages people

munities and promotes successful work,

inclusion. In contrast to traditional vocatio

generally begins with job training and move

the person is job ready, supported empl

and train model that gives working par

transportation, specialized job training,

along supports.

24A clubhouse is a structured rehabilitat ion program focusing on developing vocational skills. Clubhouse participants or membdecisions and in the day-to-day operations of the clubhouse. Many clubhouses have paid staff members who are people with sInternational Center for Clubhouse Development (ICCD) oversees certification of clubhouses that follow the Clubhouse Model piin New York City. See www.iccd.org for more information.


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Anyone living with a serious mental illness knows that recovery canyears. The milestones are familiar: the onset of symptoms, an initsis, an accurate diagnosis, beginning treatment, and, hopefully, effective evidtreatments. Tragically, too many people are never diagnosed or accurately

and many never receive effective treatments.

The data are staggering: one study showed 60 percent of people with

disorder received no services in the preceding year;1 another revealed that th

tween symptom onset and receiving any type of care ranged from six to

The situation is even worse for traditionally underserved groups, such as

ing in rural/frontier areas, the elderly, racial/ethnic minorities, and those

incomes or without insurance.

There are many reasons public mental health systems are failin

and care for their target population, but a single problem is at the root:

ing lack of reliable data that can accurately reflect states activities and h

improvements.

Measuring the

Performance of

State Systems

C H A P T E R T W O



36/204

ing) resources, funding anything but the most effective

services is simply not sustainable. Yet how can states ap-

propriately target their funding if they dont know what

works and what doesnt? With Grading the States, NAMIis unequivocally asserting that funding for mental health

treatment services must be tied to performance and out-

comes.

Understanding the Information Gap

The gaps in states collection, compilation, and monitor-

ing of data regarding mental illness and mental health

services are both wide and deep.

Service Availability and System Capacity areOften Unknown

Many states are unable to report even basic informationabout their mental health services. Many do not know, for

example, the total number

of inpatient psychiatric beds

in their systems, how long it

takes to get such a bed fol-

lowing an emergency room

stay, or how many people re-

ceive evidence-based treat-ments, such as ACT.

Data like these should

be collected in every state

(as well as at the county

level where services are often

managed and delivered). But

often there are no systems in

place for accomplishing this.

Service Effectiveness is Truly a Mystery

Compiling trustworthy data about the level of available

Available Data are Not StandAcross States

In order for data to truly drive sindividual service providers and

consistently collect information t

to the community and county l

state level. Unfortunately, even a

do collect some data in this mann

nitions and measures they use

therefore usefulcomparisons a

difficult.3

At the state level, part dated information technology (I

many state mental health agencie

sistence of paper health records d

that data can and will be standardi

ogy and adopting electronic reco

timately facilitate the collection of

be used for rigorous program ev

performance assessments.Unfortunately, once data are

level they are of limited use fo

Despite its name, SAMHSAs Unif

(URS) gathers administrative data

form because of significant differe

fine variables, variable categories

SAMHSA itself warns analysts not

pare states, presumably because oThe quality of the URS data appear

SAMHSAs adoption of a subset of

National Outcome Measures (NO

right direction. However, none

rently reliable or robust enough t

performance measurement NAMI

tal health community need and e

they will be in the future.

Federal Agencies Give MentaCollection Low Priority

Recovery, not stability, is

more than an acceptance of

the illnessit is an embracing

of the situation, making thebest of it, and living the

fullest life possible with the

limitations given. It is like

learning to dance with a

broken leg.

Consumer from Illinois

MEASURING THE PERFORMANCE OF STATE S


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Within SAMHSA, resources devoted to the collec-

tion and analysis of mental health and mental illnesses

pale in comparison to investments on the substance

abuse side. For example, unlike SAMHSAs National

Survey on Drug Use and Health (NSDUH), the size and

budget of its Client/Patient Sample Survey (which cov-

ers mental health) is too small to support state-level es-

timates. The major national psychiatric epidemiologicalsurveys also preclude the development of state- and

small-area estimates of mental illness.4

SAMHSAs support to states to collect data through

the Behavioral Risk Factor Surveillance System (BRFSS)

has also declined in recent years. The BRFSS is a unique

population health surveillance tool designed to gather

information on behavioral risk factors and conditions for

chronic diseases, injuries, preventable infectious dis-

eases, and health care access at the state and local levels.5

It includes multiple optional modules (with standard

sets of questions developed by the CDC and/or its part-

ners) that each state decides to include based on priori-

ties and funding. A major strength of BRFSS is

individual- and state-level data on both mental

ical health. Unfortunately, not all states opt

modules that include mental health inform

number of states collecting mental illness-rel

mation through BRFSS declined from 39 stat

ing Washington, D.C.) in FY 2006, to 35 st

2007, to only seven states (Arizona, Colorado, Idaho, Illinois, Massachusetts, and Ohio) in F

Medicaid administrative data are another

rich source of information on state mental h

tems, but they are rarely systematically anal

state-by-state basis for mental health-related

This is likely because the data are highly com

unit of analysis is usually a claim, not a pe

provider) and analyses would need to be tailor

states program since Medicaid itself varies co

from one state to another.7

6 Th d l f d h

What are Electronic Health Records?

Electronic Health Records (EHRs) compile comprehensive informa-tion about an individuals health in a format based on nationally rec-

ognized standards. An EHR is typically created and managed by au-

thorized health care professionals in a variety of settings, such as a

providers office, pharmacy, emergency room, or laboratory. An EHR

provides real time patient health information and an immediate

health history for providers. As a result, EHRs can help reduce ad-

verse drug reactions, decrease duplicate testing, increase medica-

tion compliance, and improve benefit and claim management. For

people with mental illnesses and/or substance use problems, who

often interact with large numbers of providers, EHRs facilitate infor-

mation exchange that increases the efficiency of care.

A Personal Health Record (PHR) is also a comprehensive elec-

tronic record of an individuals health information based on nation-

ally recognized standards. While similar to amanaged and controlled by the individual, w

information. PHRs can empower consumers

standing of, and sense of control over, th

communication with providers. As the tech

EHRs and PHRs develop, it is essential that

tect the privacy of individuals as well as th

information be in place. Without such safegu

mental illnesses are at risk of further exclusi

For more information, see the Natio

Information Technologys Report to the Off

dinator for Health Information Technology

Information Technology Terms, April 28, 20

www.nahit.org/images/pdfs/HITTermsFina



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Finally, the Bureau of Justice Statistics (BJS)

has dropped all mental health questions from its peri-

odic census of state and federal adult correctional facil-

ities.8 The agencys inmate survey, which alternatesbetween jails and prisons every two years and does in-

clude questions on mental illness, only supports na-

tional estimates.9

Missed Opportunities

States, inpatient and outpatient provider groups, and in-

dividual practitioners have a great deal to learn from one

another. Policies and prac-

tices that are successful in

one state or community can

be replicated or adapted in

other places. Knowing what

works around the country,

and how different jurisdic-tions compare to one an-

other, can also push state

and local governments to

increase and improve resource allocation, and tackle is-

sues in their own systems. Without reliable data these

important opportunities will continue to be missed.

NAMIs Grading the States Report

Americans have come to expect regular scorecards on a

variety of key public issues: child well-being (Kids

Count), education (Leaders and Laggards), and main-

stream healthcare (Americas Health Rankings), among

others. The popularity of these scorecards reflects a

growing demand for transparency and accountability in

public sector systems. By making factual information

widely available, the scorecards have improved the

quality of public debate, increased government over-

sight, and in many cases have led to better decision

tal health field to help fill the in

putting people who live with seri

risk. The 2006 Grading the States r

comprehensive effort to assess statein more than 15 years. Overall, th

dismal D.

In August 2008, NAMI survey

agencies in preparation for this 2

questions are reproduced in the a

ering similar topic areas, this lates

has evolved in several ways:

More Detail-Oriented Questions

structured to draw out cleare

information. States were also

clarifications and additional c

responses.

Supplemental Information Req

report, NAMI asked states tosupporting materials and pla

including those covering cul

housing, and workforce deve

able to review many of these

were comprehensive and we

Direct Consumer and Family In

(in English and Spanish) a W

consumers and family memb

their experiences with state m

Using a snowball sample, i

health system users participa

asked to forward the survey

ple, more than 13,000 respo

from across the country. The

statistically representative anbut they allowed NAMI to co

the issues and measures that

deed of great importance to

ily members. This direct con

Recovery for me means

having the ability to function

in society without having to

take a yearly vacation in

the mental ward.

Consumer from Kentucky



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Some New Sources of Information:As in 2006, most

of the data for assessing states in this report came

from NAMIs survey of state mental health agen-

cies. However, three secondary sources ofinformation were used for state estimates on these

measures: (1) the number of adults living with

serious mental illnesses (based on work by

Charles E. Holzer, III, Ph.D., of the University of

Texas Medical Branch in Galveston, Texas, and

Hoang T. Nguyen, Ph.D., of LifeStat LLC10); (2)

the extent of shortages in the mental health work-

force (based on work by Joseph P. Morrissey,

Ph.D., Thomas R. Konrad, Ph.D., Kathleen C.

Thomas, Ph.D., and Alan R. Ellis, M.S.W., of the

Cecil G. Sheps Center for Health Services

Research at the University of North Carolina at

Chapel Hill); and (3) hospital-based inpatient psy-

chiatric bed capacity (based on annual survey data

from the American Hospital Association). Otherinformation sources were used to identify states

with ongoing federal investigations and lawsuits

involving public sector programs treatment of

adults living with serious mental illnesses. For

more information about NAMIs questionnaire, scor-

ing methodology, and these secondary data sources,

see the appendix.

State Scorecards andSurvey Methodology

All states except South Dakota responded to NAMIs sur-

vey for this 2009 Grading the States report.11 The informa-

tion was scored and weighted in four broad categories:

I. Health Promotion and Measurement

II. Financing and Core Treatment/Recovery Services

III. Consumer and Family Empowerment

IV. Community Integration and Social Inclusion

depending on the number of levels needed to d

between state responses) and then these sc

weighted to reflect NAMIs judgment of the r

portance of the measure.12 State gradesboand for each of the four categories listed above

on these weighted scores. The nations grade

lated by averaging the weighted state scores.

ures and weights used in each category, and in

sources used, are described below.

Category I: Health Promotionand Measurement

In NAMIs survey of state mental health agen

were asked to report a variety of basic informa

as the number of programs delivering evide

practices, emergency room wait-times, and th

of psychiatric beds by setting.

The number of states unable

to provide this type of data

was troubling. Unfortunately,

inconsistencies in the way

states reported these data

(among those that did) pro-

hibited cross-state compar-

isons. As a result, in this cate-

gory NAMI scored states onlyon their ability to provide

seemingly accurate data on a

variety of services, not on

whether they provide enough

evidence-based practices, have an adequate n

inpatient psychiatric beds, or provide timely

those beds, etc. (two of these measures were f

alyzed in Category II using estimates andsources).

Other components of Category I include

formance on seclusion and restraint, state

parity laws, programs for the uninsured, and

Recove

many id

mental il

mother,

friend, n

not the fi

about wh

the morn



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This category accounts for 25 percent of a states over-

all score.

Category II: Financing and CoreTreatment/Recovery Services

Category II includes a variety of financing measures,

such as whether Medicaid reimburses providers for all,

or part, of important evidence-based practices; if the

state charges outpatient co-pays; and if access to anti-

psychotic medications is restricted in any way.Category II also includes some measures that cap-

ture the extent of service delivery in each state: the share

of adults with serious mental illnesses served by the state

mental health system and availability of ACT

Table 2.2 Financing & Core

Services, Catego

Workforce Development Plan

(Questionnaire Item 47)

Workforce Availability (Sheps Center)

Inpatient Psychiatr ic Bed Capacity (A

Cultural CompetenceOverall Score

(Questionnaire Items 3537)

Share of Adults with Serious Mental

Illness Served (Item 2)

Assertive Community Treatment (ACT)

per capita(Item 23)

ACT (Medicaid pays part/all) (Item 10

Targeted Case Management (Medicai

pays) (Item 10)

Medicaid Outpatient Co-pays (Item 1

Mobile Crisis Services (Medicaid pays

(Item 10)

Transportation (Medicaid pays) (Item

Peer Special ist (Medicaid pays) (I tem

State Pays for Benzodiazepines (Item

No Cap on Monthly Medicaid Prescrip

(Item 14)

ACT (availability) (Item 22)

Certified Clubhouse (availability) (Item

State Supports Co-occurring Disorder

Treatment (Items 68)

Illness Self Management & Recovery

(Medicaid pays) (Item 10)

Family Psychoeducation (Medicaid pa

(Item 10)Supported Housing (Medicaid pays p

(Item 10)

Supported Employment (Medicaid pa

part) (Item 10)

Supported Education (Medicaid pays

(Item 10)

Language Interpretation/Translation

(Medicaid pays) (Item 10)

Telemedicine (Medicaid pays) (Item 1

Access to Antipsychotic Medications (ItClinically-Informed Prescriber Feedba

System (Item 16)

Same-Day Billing for Mental Health &

Primary Care (Item 17)

Supported Employment (availability) (I

Integrated Dual Diagnosis Treatment

Table 2.1 Health Promotion & Measurement, Category I

(25 percent)

Domain OverallWeight Weight

Workforce Development Plan (Questionnaire Item 47) 15.0% 3.8%

State Mental Health Insurance Parity Law (Item 9) 8.1% 2.0%

Mental Health Coverage in Programs for Uninsured 8.1% 2.0%

(Item 18)

Quality of Evidence-Based Practices Data (Item 23) 8.1% 2.0%

Quality of Race/Ethnicity Data (Item 4) 8.1% 2.0%

Have Data on Psychiatric Beds by Setting (Item 27) 8.1% 2.0%Integrate Mental and Primary Health Care (Item 41) 8.1% 2.0%

Joint Commission Hospital Accreditation (AHA) 4.0% 1.0%

Have Data on ER Wait-times for Admission (Item 26) 4.0% 1.0%

Reductions in Use of Seclusion & Restraint (Item 33) 4.0% 1.0%

Public Reporting of Seclusion & Restraint Data (Item 34) 4.0% 1.0%

Wellness Promotion/Mortal ity Reduction Plan (Item 39) 4.0% 1.0%

State Studies Cause of Death (Item 38) 4.0% 1.0%

Performance Measure for Suic ide Prevention (Item 40) 4.0% 1.0%

Smoking Cessation Programs (Item 42) 4.0% 1.0%Workforce Development PlanDiversity Components 4.0% 1.0%

(Item 47)

100.0% 25.0%



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Association, and the severity of shortages in the mental

health workforce based on recent pioneering analysis by

researchers at the Cecil G. Sheps Center for Health

Services Research at the University of North Carolina atChapel Hill.13

This category also includes measures of: the avail-

ability of specific evidence-based practices in parts of the

state or statewide; state policies and practices that deal

with co-occurring mental health and substance abuse

treatment needs; and state mental health agency pro-

grams for individuals and families involved in the

National Guard. It also includes a multi-faceted measureof state planning and activities to develop cultural com-

petence (see Table 2.2). This category, Financing and

Core Treatment/Recovery Services, is the most heavily

weighted of the four, accounting for 45 percent of each

states overall score.

Category III: Consumer andFamily Empowerment

Category III consists of a variety of measures that NAMI

views as top priorities. It includes results from the Con-

sumer and Family Test Drive (CFTD), an original research

instrument developed by NAMI in 2006 that measures

how well people with serious mental illnesses and their

family members are able to access essential informationabout conditions and treatment resources from state

mental health agencies.

This category also measures whether there is a writ-

ten mandate that consumers or family members sit on

the state Pharmacy and Therapeutics (P&T) Committee,

and if the state promotes consumer-run programs,

peer services, and other important educational and sup-

port resources such as family and peer education pro-grams and provider education programs with significant

consumer involvement. Finally, Category III measures

the extent to which consumers and family members

monitor conditions in inpatient and community-based

Category IV: Community Integration

and Social Inclusion

Category IV includes activities that require col

among state mental health agencies and o

agencies and systems. It covers topics such a

pension and restoration of Medicaid benefits d

after incarceration; the availability of jail div

entry programs, and mental health courts; st

education campaigns and activities; and effofor, and secure, the resources needed to add

term housing for people with mental illn

Table 2.4). This category accounts for 15 pe

states overall score.

Table 2.3 Consumer/Family Empowerm

(15 percent)

Consumer & Family Test Drive (CFTD)

Consumer & Family Monitoring Teams (Questionnair

Item 32)

Consumer/Family on State Pharmacy (P&T) Commit

(Item 15)

Consumer-Run Programs (availability) (Item 22)

Promote PeerRun Services (Item 24)State Supports Family Education Programs (Item 28

State Supports Peer Education Programs (Item 29)

State Supports Provider Education Programs (Item 3

Table 2.4 Community Integration & Soc

Category IV (15 percent)

HousingOverall Score (Questionnaire Items 4344

Suspend/Restore Medicaid Post-Incarceration



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Challenges in Assessinga Complex System

Our nations public mental health system is complex,bridging inpatient and community-based health ser-

vices, housing and economic support programs, voca-

tional and social supports, and the criminal justice sys-

tem, among others. Because of this complexity, it is

extraordinarily challenging to accurately assess not only

its overall quality, but also the effectiveness of each

component and the extent to which the components

successfully interact.As noted earlier, the lack of reliable outcome data

generally limits the ability to measure the effectiveness of

state services. Plans and policies m

not necessarily translate to imple

based practices may be intended,

standards.With those caveats in mind, t

best comprehensive, comparative a

tal healthcare systems to date. Stat

Chapter 5 go beyond existing state

each states qualitative performance

The following chapter provide

findings. It outlines national trend

tem performance, common strengtunique challenges faced by some

ing areas of innovation.


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State by state, this assessment of our nations public menservices finds that we are painfully far from the high-qualwe envision and so desperately need. While some states are making efforts to improve, the great majority are making little or no progress. NA

cipal finding is clear: the state of mental health services in this country

unacceptable.

A Mostly Dismal Report Card

As in 2006, our nation earned an overall grade of D. Yet there are certaimprovements across the country to be noted:

Fourteen states increased their overall score over the past three years;

state earned a B; and two fewer states failed outright.

The State of PublicMental Health

Services Across

the Nation

C H A P T E R T H R E E


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Table 3.1 NAMIs Grading the States 2009: Summary of State Grades


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2009 Category Grades

2006 Grade 2009 Grade I II III

D USA (mean) D D C D

B Connecticut B B B A

B Maine (6 states) B B B

C Maryland B B B

C Massachusetts B B C

New York C B B

D Oklahoma B C C

D Arizona C D B B

C California (18 states) B C D

Colorado F B CC DC D B D

C Hawaii D B D

C Minnesota D C C

C Missouri C C D

D New Hampshire C C D

C New Jersey C C B

C New Mexico C C F

B Ohio C C C

C Oregon C B F

D Pennsylvania D C CC Rhode Island D C D

C Vermont C C C

D Virginia C C C

D Washington D B F

B Wisconsin D B C

D Alabama D F C D

D Alaska (21 states) D C F

Documents

Grading the States