Third Edition - 2008
iii
Who We Are:
The National Alliance on Mental Illness - Vermont (NAMI-Vermont) is a nonprofit organization that assists families, friends and individuals living with serious mental illness. Our mission is to provide support, education and advocacy to improve the quality of life for more than 1 in 5 Vermonters who suffer from these devastating illnesses.
“This We Believe” – NAMI-Vermont Statement of Principles & Values:
as adopted by Board of Directors, November 17, 2007
§ We believe that bipolar disorder, schizophrenia, major depression and other serious mental health conditions are neurobiological-based illnesses that interfere with normal brain chemistry, and one’s ability to think, feel, function and relate to others. Genetic factors may create a predisposition in some people, and life stresses (including trauma) may trigger the onset of symptoms.
§ We believe, regardless of diagnosis, in the promise of recovery. With treatment and support, people can & do get better.
§ We believe treatment and the recovery process are multi-dimensional. It may include access to some of the following: group and individual counseling, residential and hospital treatment, healthy exercise and nutritional choices, support from family members, friends and peers, access to supported work and housing, and the use of medications. Each individual with mental illness must find the unique mix that works best for them.
§ We believe support and education about mental illness for family members, providers and consumers is the key to reducing isolation, building connections and improving outcomes for individuals with serious mental illness and their family members.
§ We believe stigma about mental illness will only be eradicated through consistent, effective outreach and improved public awareness that spotlights individual successes and positive outcomes. We understand shame and stigma about mental illness discourages individuals from getting help, and remains a key barrier to winning public support for improving our mental health system of care.
We believe advocacy for a better system of mental health care is more effective when consumers, family members and providers work together. Divided, we will surely fail. Together, there is no limit to what we can accomplish.
Nami-Vermont Family Resource Guidebook
Table of Contents
Purpose Of This Family Resource Guidebo.k 2
What is Mental Illness?......................................................................................................................... 3
THE MAJOR MENTAL ILLNESSES…………………………………………………………………………………..…. 7
Schizophrenia 7
Bipolar Disorder 8
Major Depression 10
Schizoaffective Disorder 11
Anxiety Disorders 11
Borderline Personality Disorder 12
Getting Help For Substance Abuse 14
Mental Illness And Developmental Disabilities 16
Serious Disorders Of Children And Adolescents 16
HOW ARE MENTAL ILLNESSES TREATED?................................................................................. 18
Medications 18
General Health & Wellness 24
Access To Reduced-Cost Medications & Health Care 25
Supportive Psychotherapy 26
Peer Support 27
Recovery 28
COPING WITH MENTAL ILLNESS…………………………………………………………………………….……… 31
The Family Perspective…………………………………………………………..…………………….…….……. 31
Impact On The Family: A Parent’s Thoughts 31
Adjustment, Coping and Family Support 32
Team Approach In Treatment And Recovery 33
Advice From Family Members: What Works 34
NAMI - Vermont Programs That Can Help……………………………………………..……...……….…. 36
PREPARING FOR A CRISIS……………………….…………………………………………………………………….. 41
Do’s and Don’ts 41
Alternatives to Hospitalization 43
Psychiatric Advance Directives 43
Suicide Prevention 43
HOSPITALIZATION……………………………………………………….……………………………………………….. 46
Voluntary Hospitalization 46
Involuntary Hospitalization And Commitment 47
Emergency Evaluation 48
Commitment Hearing 50
Involuntary Medication 50
During Hospitalization 51
After The Hospital 52
COMMUNITY-BASED SERVICES……….…………………………………………………………………………….. 53
Crisis Services 53
Assessment And Treatment 54
Treatment By A Psychiatrist 54
Outpatient Counseling / Therapy 55
Case Management 56
Residential Services 57
Peer Recovery Programs 57
Vocational Services 57
FEDERAL PROGRAMS: SSDI, SSI, MEDICAID & MEDICARE 58
SSDI (Social Security Disability Insurance) 58
SSI (Supplementary Security Income) 59
Medicaid And Medicare 60
Getting Help With Employment & Benefits 61
STATE PROGRAMS & BENEFITS 63
Guardianship And Protective Services 66
Wills And Estate Planning 68
OTHER COMMUNITY RESOURCES…………………………………………..……………………………………. 70
Housing 70
Criminal Justice System 71
IF / WHEN THINGS GO WRONG…………………………………………………………………………………….. 73
What To Do / Who To Call 73
Formal Grievances 74
Americans With Disabilities Act (ADA) 75
APPENDICES
A: Mental Health Crisis Hotlines – available 24/7 77
B: Vermont Community Mental Health Centers 78
C: Other Mental Health Treatment Providers & Resources 83
D: Other Local/State Agencies, Departments And Organizations 84
E: Vermont Coalition of Clinics for the Uninsured 86
F: Vocational Rehabilitation Offices 87
G: Other Local & State Resources 88
H: Recommended Reading 91
iii
Foreword
Families coping with the mental illness of a loved one need information. Sometimes that need is unexpected and immediate. Questions never before considered become important. New questions arise from unforeseen circumstances. There are usually answers to these questions. Yet the search for these answers may require more energy and persistence than a family in crisis can muster.
This Family Resource Guidebook aims to provide practical answers to relevant and important questions. It begins with basic information about the major mental illnesses and their treatment. Such information should enable families to have more productive discussions with service providers. The Guidebook also provides information to help people negotiate the systems that treat, support, protect and encourage an individual who has a mental illness.
The material in this Family Resource Guidebook comes from many sources. The 1995 and 2000 editions of the Guidebook for Families, published by NAMI-New Hampshire were an inspiration, as was the 1999 NAMI-Wisconsin Family and Consumer Resource Guide (Edition IV), NAMI National facts, and the NAMI National website. The Guidebook draws heavily from the NAMI Family-to-Family Education Course, written by former Vermont resident and NAMI-Vermont President Joyce Burland, Ph.D. It also draws upon: the Recovery Education Project, created by Mary Ellen Copeland, M.A., M.S.; the unpublished thesis of Joan Knight, M.A.T., M.S., and co-founder of the Mental Health Education Initiative in Chittenden County; the Final Report on Mental Health by the President’s New Freedom Commission, 2003; the U.S. Surgeon General’s Report, 1999; the work of Kim Mueser, Ph.D. and Lindy Fox, M.S. at the Dartmouth Psychiatric Research Center; and The Statewide System of Care Plan for Adult Mental Health in Vermont, Fiscal Years 2002-2004. Material written by Sarah Chamberlain for NAMI-Vermont’s new Living with Mental Illness in the Family workshop was also incorporated into this new edition.
Many individuals helped to research, write, edit, provide information for, and proofread specific sections of this edition. Our special thanks to: Sandra Steingard, M.D., Paul Landerl, Melinda Murtaugh, Brian Smith, Jack McCullough, Evan Smith, Maureen Trudeau, Marie Luhr, Leah Matteson, Fran Levine, Linda Anderson, Larry Lewack, and Ann Moore. We are grateful to Ben Coplan, who wrote the first NAMI-Vermont Family Resource Guidebook in 1995, and Sarah Chamberlain, who worked diligently on the two subsequent editions. Thanks too to Judy Kenyon, who updated our contact information for the agencies listed in the appendices.
We apologize in advance for any errors and omissions such a publication will inevitably have. Please bring them to our attention so that we may correct them in future printings and editions. To comment or for more information, contact:
NAMI-Vermont (802) 244-1396
162 South Main Street (800) 639-6480
Waterbury, VT 05676 www.namivt.org
Introduction
Purpose Of This Family Resource Guidebook
Mental illnesses are devastating, not only on those who are ill, but also to the family members and friends who love and care about them. There is the initial shock, followed by a flood of questions. Why him or her? What went wrong? Why is this happening now? What did we do? What didn’t we do? What can we do? People feel overwhelmed and confused, and experience strong feelings of anger, grief and guilt. The search for effective care can be expensive and bewildering.
Those of us in NAMI (the National Alliance on Mental Illness) can empathize with your experience because one of our loved ones, or we, ourselves, has a mental illness. We have struggled mightily, learned a great deal, and found some answers. We want to pass on this knowledge to you so that your path, difficult as it is, may be a bit smoother.
The term ‘consumer’ in this Guidebook refers to a person who has in the past or who is now experiencing symptoms of mental illness. The terms ‘mental illness,’ and ‘brain disorder’ will be used interchangeably.
What Is Nami?
In 1979, a few family members of individuals with a mental illness began meeting in each other’s homes to share their frustration and pain. They soon realized they were not alone, and vowed to work for more effective treatment and care. Since these first meetings in 1979, the National Alliance on Mental Illness (NAMI) has become the nation’s most vocal grassroots, self-help and family advocacy organization dedicated to improving the lives of people with severe mental illnesses such as schizophrenia, bipolar disorder (manic depression), major depression, obsessive-compulsive disorder, and panic disorder.
NAMI is built on four cornerstones: support, education, advocacy and research. With over 200,000 members nationwide, and over 1,200 local and state affiliates, NAMI members work tirelessly to support and educate families and consumers, end stigma and discrimination, and advocate for effective treatment and better services for those affected by mental illness. NAMI also supports increased funding for research leading to an understanding of the causes of brain disorders and their eventual cures.
The national office of NAMI can be reached at:
NAMI (703) 524-7600
2107 Wilson Boulevard, Suite 300 Helpline (800) 950-6264
Arlington, VA 22201-3042 www.nami.org
What Is Nami-Vermont?
NAMI-Vermont was founded in Burlington in 1983 by three visionary individuals: Rochford Thibodeau, Priscilla Welsh and Rita Hunt, their families, and the families of others. In 1984, it incorporated as a state affiliate of the National Alliance on Mental Illness (NAMI). NAMI-Vermont has a Board of Directors and support groups throughout the state. A small professional staff works out of our office in Waterbury. Through the work of its extensive network of volunteers and staff, NAMI-Vermont provides support groups, free classes for family members and providers, a statewide toll-free Helpline offering information and referral to mental health services, and works for improvements in the mental health system of care. (Details about our programs and services can be found on pp. 36-40 of this Guidebook.)
NAMI-Vermont can be reached at:
162 South Main Street - Waterbury, VT 05676
(802) 244-1396 / (800) 639-6480
Website: www.namivt.org * Email:
WHAT IS MENTAL ILLNESS?
Serious mental illnesses are neuro-biologically-based illnesses that involve disorders of the brain. Mental illnesses disrupt a person’s ability to think, feel and relate to others. These disorders can diminish an individual’s ability to cope with the ordinary demands of life, and experience its pleasures. Anyone can have a mental illness regardless of gender, age, income, race, religion, or background.
Facts About Mental Illness
♦ Mental illnesses are more common than cancer, diabetes or heart disease.
♦ In any given year one in four adults--approximately 57.7 million Americans--experience a mental health disorder. 23 million live with serious mental illness every day.
♦ One in every 5 families is affected at some point by a major mental illness, such as bipolar disorder, schizophrenia, or major depression.
♦ A conservative estimate puts the total of youths under 18 who have a mental, behavioral, or developmental disorder at 7.5 million, or 12% of the country’s 63 million youths under age 18. Yet, only one-fifth of youth who need mental health treatment actually get it.
♦ Mental illnesses most typically strike individuals in the prime of their lives, often during adolescence and young adulthood. Although all ages are susceptible, the young and the old are especially vulnerable.
♦ Mental illnesses are treatable, and treatment works! The treatment success rate for schizophrenia is 60%. It is 65% for major depression, and 80% for bipolar disorder. By comparison, the success rate for treatment of heart disease ranges from 41-52%.
♦ Stigma or shame erodes confidence that mental illnesses are real, treatable medical conditions. Stigma, hopelessness and denial prevent people who live with these illnesses from seeking out and getting effective help and treatment.
♦ Severe psychiatric conditions are the number one reason for hospital admissions nationwide. People who have a mental illness fill nearly 21% of all hospital beds.
♦ Twenty-four percent of state prisoners and 21 percent of local jail prisoners have a recent history of a mental health disorder. (2006, September U.S. Dept of Justice Report.)
♦ About two-thirds of adults with a diagnosis of serious mental illness are unemployed.
♦ Many people with serious mental illness have contributed extensively to our society. Vincent Van Gogh painted many of his famous paintings of irises while hospitalized for mental illness at St. Remy in France. Both President Abraham Lincoln and Prime Minister Winston Churchill suffered from brain disorders, yet were extremely effective leaders of their countries at times of national crises. John Nash, the Nobel Prize winning mathematician whose life was recently documented in the movie A Beautiful Mind, also suffers with a brain disorder.
Common Myths About Mental Illness
¨ A person with schizophrenia has a “split personality” or is undecided between two options.
False. “Split personality” is a very rare condition known as multiple personality disorder. It is a dissociative disorder and is usually the result of severe childhood trauma and abuse. The confusion arises in part because the word “schizophrenia” means “split brain.”
¨ “Poor parenting” causes mental illness.
False. Although this is absolutely false, this misperception has caused great pain to countless parents, often preventing them from seeking effective treatments for their loved one.
¨ Mental illness is a form of mental retardation.
False. Intelligence among those who have a mental illness is as equally distributed as it is among those who do not. In fact, many of society’s most gifted artists, musicians and actors live with major depression, bipolar disorder or other mental illnesses. (However, individuals who are experiencing acute mental illness may experience symptoms that include temporary impairment of rational thinking and understanding which may appear similar to mental retardation.)
¨ Stress causes mental illness.
False. Although stress may exacerbate the symptoms, stress alone does not cause the illness. Mental illnesses are thought to result from a complex interaction of factors which include brain structure and chemistry, genetic vulnerability and a host of environmental factors, including (but not limited to) psychological stress.
¨ Mental illness is inherited.
Yes and no. This is partially true. Some forms of brain diseases, such as bipolar disorder, do tend to run in families more than others. However, the onset of brain disorders is much more common and yet more complicated than can be accounted for by genetics, alone.
¨ Mental illness is contagious.
False. You will not “catch” a mental illness by being around someone who has one.